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Achilles International: Where Everyone Can Run

2012-12-30T11:16:00.004-05:00

by Amy Saffell

As we enter into a time when people are making resolutions for 2013, many of them health related, I wanted to share my experiences with an international running group for people with disabilities, Achilles International. It has become one of my favorite weekly activities, and it’s challenged both my body and my mind. I hope that you, too, will get involved in the new year.

Growing up in Atlanta around a lot of other people in chairs, I was involved in a variety of organized sports from an early age. Being born with spina bifida, I have good arm strength, so a lot of options were available to me. When I went to college in Greenville, South Carolina, I knew that there would be far less people in chairs around, but I wanted the challenge of creating my own opportunities when it came to needs relating to my disability, including fitness. Just because my team sports days might have been behind me, or at least on hold, didn't mean that I wanted to let my fitness level fall by the wayside. It was at that point that I turned to running and never looked back.

I always assumed that running was something that I couldn't do with other people, especially able bodied people, because my pace is erratic depending on if I'm going uphill, downhill, or flat. Like most things with my disability, I took the situation for what it was and figured out a way to adapt. I love music, so through college and my first 8 years of living in Nashville, I used running as my way to listen to music to unwind while getting in some great cardio work outdoors. Even though those solo runs on familiar asphalt became something that I really enjoyed, I always knew that running for most people was a social kind of thing, and that was something that I was missing out on, especially since I’m generally a really social person. I participated in Race For The Cure twice in just the walk portion and saw how much camaraderie being part of my team brought, and it stayed in the back of my mind for several years that I would love that kind of experience on a more regular basis.

The past two years, I got the opportunity to watch parts of the Country Music Marathon in Nashville as part of a fundraising initiative for our local youth wheelchair sports and independence program, and especially this past year, it really brought me back to my previous race experiences. Race day logistics can be tough on your own in a chair, so I hadn’t entered any more races, but watching the other runners, I knew I had to do something to get that experience again. I started talking about it with someone else in our group, and he asked if I knew about Achilles International because a new chapter had just been started in Nashville. I wasn't familiar with Achilles, but after learning more about it, it sounded like the perfect group for me.

On Thanksgiving, Amy ran in one of Nashville's more popular races, The Boulevard Bolt.
Amy and her guides brought some holiday cheer!

Achilles International was founded in 1983 New York by Dick Traum, an amputee who had found running to be a powerful way to raise self-esteem while keeping in shape, and he wanted to provide that same opportunity to other people with disabilities. As part of Achilles, each athlete with a disability is paired with another athlete without a disability, referred to as a guide, to run together. To Achilles, as it always had been to me, running is defined as any kind of forward locomotion, and athletes represent a wide range of disability groups, from chair users to walker, crutch, or brace users to amputees to those who are blind and a variety of others. Some Achilles athletes use a power chair for their daily mobility but switch to a manual chair for their Achilles workout. Some people use a racing chair or a handcycle, but I use my manual everyday chair for my runs, which I like because I don’t have to have any extra equipment, other than the pair of gloves from a local bike shop that I started using within the past few months to cut down on the blisters on my hands, to participate. Many people come to Achilles with no running experience, some only able to go a very short distance on their own at first. For people in chairs, the guides can even help push if needed. Achilles athletes have participated in numerous events, and chapters exist across the US and in dozens of countries around the world.

A few weeks after the Country Music Marathon, I went to my first Wednesday night run, and I was immediately hooked. Sometimes fitness groups for people with disabilities feel so modified that it can be a setback to reaching a higher level of success, but not with Achilles. Each pairing of athlete and guide is free to run independent of others in the group so that everyone can have his or her own goals. It’s the goals of the athlete that rule the pairing, but there’s plenty of advice to go around from the guides. Something that I love about Achilles is that most of our guides have done at least one marathon or half marathon. As someone who has been at least a casual athlete my whole life, that brings a credibility to the group to know that I’ll always have advice from an experienced runner and that the guides are capable of pushing me to do more than I thought I could.

Amy's first race this past Spring

From a fitness standpoint, I started with Achilles without really having goals. I wasn’t a new runner, and I was just there to be able to run with other people and to run somewhere different from my normal route. However, I’m way too competitive to maintain that attitude. Now, I get disappointed when I don’t beat a previous time and constantly work to get faster, especially when it comes to hill climbing. I also have realized a goal that I didn’t even know I had when I first started with Achilles, running throughout the year. My favorite running spot for years had been a park near my house, but there aren’t lights along the path, so I didn’t run much from November to March since it gets dark early. Now, I have a lit place to run on Wednesdays and have scoped out a few more lit pathways that I didn’t before know existed. I also have the people to run with to make running at night safe. Even though I didn’t think that I’d like running in the cold, I’m actually really enjoying it now that I’ve been at it a few months. (You can ask me if I changed my mind when it gets frigid in January and February!) I’ve lost weight and gained muscle, something that isn’t always easy from a chair, and I’m proud of what I’ve been able to accomplish from a fitness perspective since joining Achilles.

My favorite part of Achilles, though, has to be the people who I've met. Like I mentioned before, I never really considered running with someone else because of my pace, and now I'm loving it. I’ve made some awesome friends through running. It’s amazing the conversations that can happen away from the busyness of life on an open road, and the friendships that I’ve built out of conversations from running are ones that I cherish. My guides have been fun to be around, they help me if something comes up, and they let me do my own thing the rest of the time, never making me feel awkward that my pace might be much different than their own. All races and training routes are different, and sometimes there’s an unexpected curb that I need help over, a crowd of people that I need help alerting that I’m coming, or something as simple as race packet pick-up being in an awkward area, but for me, having a guide is probably 90% social, which is exactly what I need to keep me motivated. What's most important to me is that all of the guides that I've had, especially the ones that I've had several times, want to run with me because I'm Amy and I'm fun to run with, not because I'm the girl in the wheelchair that might need help. People with disabilities want to be seen for who they are and not for limitations that their disability gives them, and that’s just the kind of thinking that Achilles guides exemplify.

My guides have also encouraged me to think of running in new ways and to push myself to do things that I didn’t before consider. Besides running on Wednesday nights with the rest of Achilles, one of my guides who became a close friend and I started running with another running group on Monday nights. For this friend and others who have run with me outside of Wednesday nights, it’s still a little humbling that they would ask to run with me on other nights knowing that they are going to have to go my pace and not their own, but the extra work has certainly strengthened me as a runner. Maybe the third time that my friend and I ran together, towards the end of our run, she said that she was thinking of doing the Country Music Half Marathon next spring. She said that she didn't want to do it for time and that she would run it with me if I wanted. I was definitely caught off guard because I had never before considered doing a half marathon. I had really only thought about 5Ks up to that point, simply because I couldn’t think that far ahead in training. I started to say that I wasn’t sure about it, but apparently my friend knew just how to persuade me. Right before she mentioned the half marathon, she asked me how I felt, and I said that I felt good. When I hesitated about the half marathon, she said that we had just ran 4 miles, and I had said that I felt good; a half marathon, she reminded me, was almost just 2 more times of what we just did. I don’t know why that clicked with me, but I can say that someone asking me to do it and being really encouraging about it made the difference. So, now I'm registered and about to really get after training. I’m still not even sure it’s hit me what I’ve gotten myself into, but I know that my supportive guides will get me through it!

It’s clear to me how my guides have helped me, but every once in a while, I get a unique compliment from one of them. A few of them have said that the interval training, running slowly with me while I go up a hill and then much faster while I go down a hill, has made them a better runner. It’s really unique that an able bodied person would comment that a person with a disability has helped them reach a higher level of fitness, and it’s something that I’m proud to be part of making happen.

Achilles always works to keep everyone safe
with guides and reflective gear.

I have now completed six races as part of Achilles, and each has been a uniquely awesome experience. The crowds on race day always energize me to be ready to do my best. I will never be the fastest person there, but that doesn’t matter; I’m doing something I love and getting better at it in my own way, and that’s enough for me. With each race, I realize something. Ultimately, I'm a part of Achilles because I love running and being part of a group of awesome people, but part of me knows that I'm doing something much bigger than myself. Nashville isn't yet used to wheelchair racers, and society in general still hasn’t fully caught on to the capabilities of people with disabilities. I know that every time I enter a race, regardless of how long it takes me to cross the finish line, I'm letting other people see what a person with a disability can do. I’m hopefully helping Nashville to become a place where wheelchair divisions of races are common and society at large to be a place where the capabilities of people with disabilities are assumed rather than questioned. And I’m already seeing progress. Our Achilles chapter has received amazing support from the Nashville Striders, Middle Tennessee’s largest running club. At any race that they manage where we’ve had wheelchair athletes compete, they always ask if we would prefer a separate wheelchair start, and they always recognize the top wheelchair finishers alongside the able bodied top finishers. I’ve gotten great feedback from other racers at each race. I’ve been embraced by other traditionally able bodied running groups, and someone is always excited to run with me there if I don’t bring an Achilles friend. There may be a lot of progress to come, but I have loved being part of what’s happened so far.

Being part of Achilles has helped to make 2012 an awesome year full of experiences that I wouldn’t have imagined having this time last year. I can’t wait to see what 2013 brings, and I hope that you will join me in exploring what Achilles has to offer this year.

Visit www.achillesinternational.org.

Columnist Amy Saffell lives in Nashville, TN and works in the music industry. She enjoys spending time with friends, concerts, and volunteering for a local youth wheelchair sports and independence group.

The Best Four Wheels for Working Women on Two Wheels

2012-12-12T20:29:00.001-05:00

For women on wheels whose work or business requires pick-up or delivery of merchandise or people (kids included!), wheelchair accessible minivans may be the best four wheels from which to choose! If a standard car “works” for you, you’re good to go. But if you want a vehicle ideal for businesswomen, soccer moms, and virtually any woman with disabilities who’s steering her own life, head straight for a wheelchair accessible minivan! Consider these six compelling reasons:

Plenty of Room with Plenty of Zoom

Minivans were designed for families, so there’s lots of seating and cargo space—even with the conversion that makes it a wheelchair accessible van. You get the steering and engine power of a standard vehicle, which full-size vans lack, along with more interior room for customers, business associates, kids, friends, and family. mobileMOMS have the ability to access the back seat to strap in car seats and assist their children with ease, without space to maneuver being an issue.

Rear or Side—You Decide

You’ll have an important choice to make when considering a modified minivan. Will the rear or side entry be better for you? With the side entry ramp (which deploys after the minivan’s automatic sliding side door has opened), you can most easily position yourself in the middle, the front passenger seat, or in the driver’s position, making the side entry more versatile. Some days, you might need to drive, and some days, you may just want to hang out in the back seat with your kids and let someone else take the wheel. Just remember, whichever way you choose, you will be saving your shoulders from the constant wear-and-tear of disassembling your wheelchair and lifting each piece into the car multiple times a day. Down the road, that repetition can lead to problems with your body, and so being proactive and choosing an adapted vehicle with either rear or side entry can save your body down the road as well.

Worthwhile Style

If you’re a real estate agent, an interior decorator or have a career that requires you to transport clients and/or cargo, a wheelchair minivan has the style and space to impress your clients and carry the tools of your trade. Unlike a boxy, full-size van, the minivan is sleek and smart, and the side-entry minivan has room for merchandise, file boxes, “For Sale” signs or what-have-you at the rear, along with additional space on the seats when you’re not carrying passengers.

A Price to Entice

By far the most popular of all wheelchair accessible vehicles, the adapted minivan is quite often the most affordable, wheelchair-ready transportation available, costing less than most modified full-size vans, adapted pick-up trucks, or SUVs. Besides being less expensive to convert, the growing number of used handicap accessible minivans nationwide brings with it lower prices than ever! Extra-good news! Disability funding can often help park a life-changing modified minivan in your driveway at little or no cost to you.

More You’ll Adore

Let’s wrap this up with a few additional positives for the magnificent wheelchair minivan—you’ll get more miles per gallon than with a full-size van, pick-up truck or SUV, and it’s easy to park, especially in parking garages with height restrictions. Because the minivan is considered a “family” vehicle, the highest Federal safety standards apply. And finally, because the minivan is uniquely prepared for work or play, it suits a variety of lifestyles—including yours!

Susan Hawkins is a writer for AMSVans.com, which sells new and used wheelchair vans nationwide. Find adaptive mobility equipment solutions as well as more than 150 wheelchair accessible vans for sale online at www.amsvans.com.

Blindside to the Flip Side

2012-11-26T20:20:00.003-05:00

by Jenny Addis

No one believes tragedy can hit home. We have this mindset that it happens to other people, not to ourselves, our loved ones, or someone we know. I was living a life that seemed perfect and what most people would call “normal.” Growing up in in a small town, Muskego, Wisconsin, with my supportive parents and four brothers, provided me with a stable family life. In turn, it molded me into an outgoing, positive, and confident young woman living life with dreams and aspirations—until that unimaginable tragedy struck me and my family’s lives. My positivity, confidence, and faith would soon be put to the test.

What was about to happen next blindsided me, my family, friends, and our entire community. We learned quickly just how fragile we really are and how life can change in just a blink of an eye, without any notice.

The night of March 16, 1997, my designated driver made a critical decision that profoundly changed my life forever. After giving a bachelorette party for my future sister-in-law, I was one of four passengers in a horrific drunk driving accident. My world as I knew it changed forever.

Only minutes away from home my designated driver, who unbeknownst to me was drunk, approached a bend in the road and decided to pass another vehicle on the wrong side, at 85 miles per hour. We began to fishtail. He counter steered. The truck lost traction. We were out of control. The ditch consumed us and sucked the truck in. We went up and over, rolling three or four times, smashing into a tree. The truck landed upside down, and I was ejected out of the vehicle.

As I lay numb and seemingly lifeless on that cold frostbitten ground....broken and exposed...my clothes were being cut and torn off me to expose my entire body, so my injuries were revealed and could be assessed. It was still unknown that I had injured C3, C5, and C6 vertebrae, which basically meant I was paralyzed from the chest down, also known as quadriplegia. I had no idea that I was being stripped of my dignity and modesty. This was only the beginning of a new life where dignity and privacy would become nonexistent.

At the age of 24, my so called “normal” life became anything but normal. I was stripped of my livelihood, career, dignity, pride, and most importantly, independence! I struggled day in and day out with the loss of everyday capabilities we all take for granted, such as walking, writing my own name, doing my hair and make-up, brushing my teeth, and having the function to go to the bathroom on my own.

I was now living my life with many questions, but no answers.

Why did I survive that horrific night? What was my purpose in this world now? Could I ever be that same Auntie I had been prior to this horrific day? How would or could I co-exist with the rest of the world in this capacity? Could I somehow get “normal” back into my life? Would men look at me the same way? More importantly, would I be able to have my own family and carry a child as I had always envisioned? AND the number one question everyone is thinking, but is afraid to ask...Would I even have the ability and capability to have sex?

My heart was aching for answers, but for the moment they would go unanswered. This was only the beginning of my epic experience filled with questions, mystery, uncertainty, and a whole new outlook on everything I had always believed in. I realized that the adjustment and the learning process of the reality behind life with a spinal cord injury and paralysis was not going to be easy.

Could I do this?

It would have been so easy to quit. Struggle after struggle, obstacle after obstacle, I chose to fight instead. As I began my days filled with intense occupational, physical, and recreational therapy I would befriend the key part to my recovery...my occupational therapist, Debbie Bebeau, who is now a clinical instructor at the University of Wisconsin–Madison. I did something that is outstanding in the eyes of adversity...I trusted. Yes! I trusted her every word. I trusted the process of beginning, literally, a new life. I was fortunate to have found her (or rather she found me) during the most critical part of my recovery, because realistically not everyone is that blessed.

The stronger I became the more aggressive our therapy sessions became, and I remember being so attentive to Debbie’s every word. One of the first things I remember learning from Debbie was a word that I will never forget…tenodesis, which is basically the motion of the wrist and fingers that occurs during active or passive wrist flexion or extension. By following Debbie’s directions, focusing on my tenodesis, and pure determination, I was able to take my limited mobility and function to relearn abilities I had lost. At first I was using adaptive equipment to write my name, brush my teeth, do my hair and make-up, and type on my computer, but today I use very little equipment. I type with my pinkie finger’s knuckle and I apply my make-up like every woman does (I do use my mouth a lot to hold tubes and covers) flawlessly, I might add! I rocked rehab and am rockin’ ‘n rollin’ my life today--all because of the support from someone who truly cared and understood. My fears were calmed, my questions answered, and the unknown, hidden behind my brave face, had disappeared.

Debbie became my go-to person who answered every question I had. We had this great connection and a mutual trust. My rehab became about me and about what I wanted and needed to learn and take home with me in order to survive in this state. As we all know, once we leave rehab we need to be prepared to be on our own. Fortunately for me, Debbie never left and was there guiding me as I began getting involved in life again.

Debbie reminded me often that I was still the same Jenny who I was prior to my SCI and that my body may have changed physically, but I was still the same person on the inside. It was up to me now.

My decision.

My spinal cord injury was not rolling these wheels anymore; I was in control!

Debbie introduced me to a program within my hospital’s spinal cord injury (SCI) unit, Peer Counseling. It gave me an opportunity to replicate what she had done for me. I became that trusted friend for others going through the same struggles I had faced as a newly injured quadriplegic. It’s necessity to have someplace or someone to turn to after an SCI who truly understands what you are going through.

Occupational therapist Debbie Bebeau with Jenny Addis

About two years post injury, Debbie encouraged me to get involved in the Ms. Wheelchair Wisconsin pageant, which showcases the achievements of women who happen to be wheelchair users to successfully educate and advocate for individuals living with a disability. Later that year, I was crowned Ms. Wheelchair Wisconsin and was representing my state in the National Ms. Wheelchair America Pageant in Fort Lauderdale, Florida. My platform was simple: The consequences of drinking and driving.

This particular experience became a significant time in my life that represented another new beginning for me. I had a voice again, a purpose in life, and a newfound confidence. I found the courage to get out of the long-term abusive relationship, with my designated driver, that had been holding me back for many years, and that caused a series of unimaginable incidences prior to, leading up to, and after that tragic night that no young girl or woman should ever have to encounter. I grew in a positive direction from this tragedy, but my designated driver (ex-boyfriend) did not. I caught him drinking and driving again, which killed me inside. I couldn’t watch him jeopardize innocent victims’ lives anymore. So...I left and have never looked back!

Today, I am living life as a thriving C5-C6 quadriplegic. I know this sounds almost impossible, but my life has changed in a positive direction in many amazing ways.

It’s been over 15 years since the accident and Debbie is still my friend and go-to person. She became a professor at UW-Madison and invites me often to share my story with her students and give them the hands-on experience, which every student appreciates. We make a great pair!

It became a natural progression to launch a career as a motivational, inspirational, and educational speaker and ROLL model. Over the years, I have spoken to schools, colleges, universities, churches, conventions, and conferences, bringing awareness and education to a countless number of children, teens, and adults of all ages on issues that include the consequences of drinking and driving, good decision making, abusive relationships, living life with a traumatic injury, the importance of occupational and physical therapy, the need for medical research, and overcoming adversity, just to name a few. I have touched more people than I can even fathom.

Today, I’m also an advice columnist here at mobileWOMEN.org. My column, “Hey Jen!” is a safe, interactive forum that I created to share my personal story, struggles, obstacles, triumphs, achievements, and successes with readers, physically challenged or not, to discuss anything and everything.

I play an active role and volunteer within the community, for such organizations as the Fashion Show for All Abilities, Ice Age Trail Alliance, and the Bryon Riesch Paralysis Foundation, and I recently teamed up with BACKBONES.

In November 2011 I was honored with the National Volunteer Accessibility Achievement Award from the Department of the Interior, National Park Service, Park Planning, Facilities and Lands for Superior Accomplishments in Advancing the Concept of “Universal Access” within the National Park Service.

In June 2012 I was given the Jefferson Award. I am extremely honored to be chosen for such a prestigious award, created by the amazing Jacqueline Kennedy Onassis, Robert Taft, Jr., and Samuel Beard. To be categorized with outstanding individuals whom I’ve looked up to throughout my life such as Oprah Winfrey and Lance Armstrong is quite humbling!

In my free time I participate in adaptive water-skiing, kayaking, hiking, boating, traveling, and like most girls, shopping. Recently, I attended a Shooting Sports Workshop for women with disabilities and learned how to shoot three types of rifles and a crossbow. The number one passion in my life is being an auntie to my six nieces and nephews.

None of this would be possible without my occupational therapist and dear friend, Debbie Bebeau. She saved me, not only physically, but more importantly, emotionally. Without her dedication, I wouldn’t have had the courage to continue living life…at least really live life!

To learn more about my personal story and to read a detailed journal of the moments and mere seconds leading up to that disastrous event, go towww.inspirationspeaks.me/.
Facebook: This Is How I Roll orwww.facebook.com/jaddis1
E-mail “Hey Jen!” mobileHeyJen@gmail.com.

Feedback regarding "Hey Jen" entry, "Don't Break my Legs...Handle with Care!". If you haven't had a chance to read check it out at
http://www.mobilewomen.org/2012/09/dont-break-my-legshandle-with-care.html

Karen wrote: "Awesome article ,Jen..Airlines and others just don't get it..so so sad..LOVE the idea of us staying right in our chair to travel!"

Diane wrote: I really love your idea of having a seat area or two that you could roll your chair, like you do in your van! Sure wouldn't be a huge loss for the airlines, and what a great convenience--not to mention comfort. I just ached thinking of how you had to work with pressure/posture as you said. Stay strong! You are an amazing advocate.

Lara wrote: Two heros! Shaina, you told me how awful the airline was but I didn't fully grasp how awful until I read Jenny's article.

Olivia wrote: Thank you for sharing this link....it really opened my eyes to something I must admit I didn't know anything about. After reading the article it is ALL I can think about & makes me want to help in any way I can:) Very inspiring!!!!

Shaina wrote: ‎Jenny Addis is a true hero. She has accomplished so many things in her life. She is a wonderful motivational speaker and I have had the pleasure of being able to hear her speak. I have never seen anyone be able to have the undivided attention of a room filled with children of all ages. I also have not meet many in my life that have such a wonderful positive outlook on life. She is awesome!!! I'm glad you guys enjoyed this:)

Neil wrote: "I take it that you were on Delta? If so they have always been on the bottom of my list to fly with. Their the worst of them all in my opinion."

Carol wrote:
There is a new product that will protect manual chairs. It is Wheelchair Caddy. I was a "neighbor" to this company at the Houston Abilities Expo and saw the product. Knowing the inventor of this product, Camp Crocker, he would be very interested in hearing what the needs are for your chairs. Perhaps his product can be adapted. Check the product out on Wheelchair Caddy on Facebook.https://www.facebook.com/Wheelchaircaddy?ref=ts

MW Readers,
These are moments that inspire me to keep fighting not just for myself, but for every person I meet. Your comments are reasons why it's so important for us ALL to share experiences, educate each other & have each other's back, so that we can build a better future for our children, become stronger communities & live healthy lives.

My Birthday Lifetime of Thankfulness Revelation

2012-11-19T14:21:00.001-05:00

by Amy Saffell

This summer, I had a big birthday…the kind that ends in a 0. For me, this milestone was a threshold that a lot of my friends had already crossed, so even though it was strange that it was actually me this time, I embraced the dawn of a new decade.

As is true for a lot of people, events such as these make me examine where I’ve been and where I’m going. As I thought about it, I saw that where I’d been had been a lot of places, both physically and metaphorically, and that my life has been enriched by a plethora of factors, regardless of whether or not I realized it at the time. Perhaps surprisingly, many of these life-enriching experiences I attribute to my disability. People have a tendency to focus on what a disability takes away from a person’s life and don’t see the value that having a disability can hold. Being born with spina bifida, I've had a lifetime of learning to cherish the unique opportunities that my disability has brought to me. Now that it's the time of year where people think about what they’re thankful for, I can truly say that I am thankful for the experiences that my disability has afforded me.

I want to share about my own life in hopes that the stereotypes of how a disability affects someone’s quality of life can begin to be broken and that people with disabilities realize that their lives hold much more significance and bright spots than they may have ever recognized.

Before I go any further, I want to acknowledge that everyone is in a different place in accepting his or her own disability. There are people who are not at the place where they have begun to see the positives that have come out of their disability, although I hope that I can serve as the catalyst for that kind of thinking. I’ve been very fortunate to live in communities that provided supportive environments for people with disabilities that lead me accept my disability from an early age and to build the resources around me to accomplish my goals. However, plenty of people have different levels of disability than me, and many people have had a variety of experiences that I haven’t. The bottom line is that anyone can find positive aspects of their life if they are willing to open themselves to the possibilities that positive aspects do exist. Don’t compare my journey to yours. If you don’t live in a supportive environment, it can be challenging, but small victories are definitely victories to be celebrated. No matter where you are in your journey, there is good to be found if you are willing to look. You might start with writing down a few things each day that you are grateful for so that you begin to turn your thinking that way.

Don’t get me wrong; there are still days when I’m frustrated that I have to have help with something that seems simple or that someone clearly shows a lack of understanding about my disability. At times a task seems ten times more complicated to do or longer to accomplish than the able-bodied people around me and there are moments when my disability doesn’t allow me to blend in with the rest of society quite as nicely as I would like. No lessons learned or positive outlook will change a lot of the things that happen in life, but it’s how you rise above these challenges that make the difference.

The main areas where I see that my life has been impacted for the better because of my disability are the activities that it’s given me the opportunity to participate in, the people that it’s lead me to meet, and the personality traits that it’s allowed me to develop.

Never A Dull Moment

I’ve never felt excluded from activities geared towards able-bodied people and have been involved throughout life in a variety of these activities in my community, but my disability has also given me unique opportunities to be involved in activities that I wouldn’t have been otherwise. Beginning from childhood, I was always involved in wheelchair sports, starting with tennis and then basketball. When my playing days ended after high school, I was student manager of our men’s basketball team in college, which was probably my favorite part of college life and something that I don’t think that I would have been involved in if I had playing options of my own. Since living in Nashville, I’ve water-skied, played sled hockey, and have recently become really involved in running with Achilles International’s Nashville chapter, a running group that proudly includes people with disabilities. In a few short months, I’ll be taking my first snow skiing trip. Unlike many able-bodied sports teams, the adaptive sports that I’ve participated in were “no cut” teams even though they’ve all been really competitive. I didn’t have to worry about whether or not I was good enough to play, although my competitive nature did cause me to want to work hard to raise my game. I was simply included in a place where I could work to develop my sports skills, make friends, and learn from throughout the seasons. I am grateful for this kind of atmosphere.

Besides sports, lots of other opportunities have come about because of my disability. When I was younger, I went to all kinds of camps focusing on kids with disabilities that gave me opportunities for fun new experiences and for learning how to be more independent. My disability has brought me opportunities to write and to public speak about a variety of disability related topics, and I love that these opportunities have made me a better writer and speaker. My disability has caused me to hone in on my strengths since it naturally causes weaknesses in certain areas, and early on, writing and speaking became something that I discovered as a strength and an interest. I’ve been asked to serve on numerous advisory boards and committees because, usually among other things, people were interested in having my input because of my disability. I was Junior Miss Wheelchair Georgia and Ms. Wheelchair Tennessee, and I can assure you that I wouldn’t have considered myself a pageant type girl unless these opportunities, which focused heavily on advocacy, were presented to me. I won the opportunity to go to New York and appear on ABC’s “What Would You Do?” because of a submission that I wrote to the show about my disability. Over the years, there have been countless community events related to people with disabilities that I never would have been invited to otherwise. It’s pretty evident that my disability has lead to some fun experiences over the course of my life.

Some people would argue that my disability still closed the door on what I could participate in and that I would have been involved in even more activities had I been able-bodied, but I see it differently. If you’ve ever seen what my schedule is like, now or in my younger years, I can assure you that there has been no shortage of activity. Sure, my activities would have been different, but with what I’ve been able to do and the fun that I’ve had doing it, I don’t see how it could have been infinitely better. I’ve been involved in both predominantly able-bodied activities and predominantly disability-related activities, and I’ve pretty much loved them all. I haven’t felt cheated in any way for the times that I chose to be involved in activities just for people with disabilities. Everything has added value to my life, for which I am grateful.

My Own Village

Equally important to the activities that my disability has lead me to be involved in are the people who I’ve met along the way. There’s the phrase that it takes a village to raise a child, and I find nowhere is that more true than when raising a child with a disability. I’ve been blessed with wonderful teachers, doctors, PTs, OTs, recreation therapists, and various other advocates who I never would have met had I not had a disability. Lately, as I’ve gotten involved in Achilles International’s Nashville chapter I’ve made some amazing friends, both with and without disabilities, who I wouldn’t have met otherwise. I’ve developed friendships with other people with disabilities that are priceless in the way that we uniquely relate to and learn from one another. Then, there are all of those people at the events that I talked about earlier who I never would have met. And a lot of times, I’ve found that despite the fact that some people are reluctant to get to know me because they don’t understand my disability, many other people are actually drawn to me because of it, and I’m constantly working on opening up to other people because I find that they aren’t as intimidated by my disability the more that I’m willing to share. It’s always a balancing act but one that is definitely worth pursuing.

Of those who are drawn in, sometimes great friendships, or at least fun encounters, arise from needing help to do something. It’s easy to struggle with needing help from others, but I can say that I’ve gained really good friendships from and have some really fun stories about those who have had to help me when I needed it. I didn’t come around to the idea easily, though. Being on my own in college was a real turning point. My sophomore year of college, I moved into the on-campus apartments, and it was up a pretty big hill to get to class. I have always liked the challenge of a good push, so I left a little early my first day and headed up to class. A perfectly nice guy comes up behind me and asks if I wanted a push since he was going my way. I had become so bent on proving that I could do everything myself that I said no, and he was gone. Being a people person, not to mention a single girl approached by a nice guy, I immediately regretted letting him go and missing the opportunity to get to know someone new. I still don’t love having help to do things, but in the case of big hills, from that day on, I’ve always said, “I can get it, but if you want to help me so that we can walk together, that would be great.” Changing my approach has given me the opportunity to meet some great people. I try to play my cards right to come off as independent as I can, but I’ve learned that having people help me when I need it, like with chair maintenance, something medically related, or an accessibility issue, actually deepens a friendship in a new way.

I’m even thankful for the naysayers who, by their skepticism, have caused me to work harder to prove them wrong. One of the most unique aspects of having a disability is that I get to influence society just by being me. I don’t necessarily take it as my personal vendetta to see to it that every mind is changed by doing things that don’t mesh with my life goals, but I know that every time I go to the grocery store, to dinner with friends, or to the mall is a chance for people to see that someone with a disability is out in society and that I’m capable of being independent and living a fulfilling life. I’m interested in many things, and my life has purpose and meaning well beyond my disability, but I also know that my life has a purpose because of my disability, and opportunities to influence society like these are part of that purpose.

I don’t think that we’re meant to live without the community of others, and I’m thankful that my disability has made my community just a little bit wider.

The Many Facets Of Me

Lastly, and maybe most important to recognize, are the personality traits that have been developed because of my disability. It’s the chicken or the egg scenario. Maybe I was given these personality traits that I was able to apply to living with a disability, or maybe my disability developed these traits in me. I like to think that both are possible and that either way, my disability has played an important and positive role in developing who I am.

Perseverance is probably the most important trait that I see my disability having developed in me. From medical issues to accessibility difficulties to attitudinal barriers in society, having a disability isn’t exactly easy. There are lots of twists and turns along the way that have to be overcome in order to have success in life. I recognized that from an early age and accepted the challenge. Those challenges are inevitably going to come, but I am in it for the long haul. When things don’t work out, I keep going, have faith that things will get better, and know that I don’t have to get through it all on my own. Those people in my life who I talked about before have been pivotal in supporting me during difficult times.

Another trait that my disability has helped me to develop is being a problem solver. From having to pick up things that have fallen in really tight spaces out of my reach to figuring out how to keep a large majority of my belongings in the lowest storage space possible to figuring out where to park my car when the accessible spaces are taken or to carrying three basketballs at once while still pushing my chair to a multitude of other challenges that come with having a disability, I’ve had a lot of practice in problem solving. I don’t let my disability dictate what I can and can’t do, so when an issue comes up, I figure out how to get around it. But this skill isn’t just related to disability issues. It has totally shaped how I think about the world in general, and people often comment how I come up with solutions that they never would have. Recently, I was having trouble with a computer program at work. I knew there was a “right” way to do what I wanted to do, but I couldn’t figure it out. I ended up playing around with it and rigging it the only way I knew how. When my boss was available for me to ask, before he told me the “real” way to do it, he asked what I had done. When I told him, he laughed and said, “I never would have thought of that” and complimented my problem solving skills. Being a problem solver helps me every day, and I’m glad to have gotten so much practice.

My disability has allowed me to develop a plethora of other personality traits. I’ve learned how to be assertive because most people won’t understand my needs related to my disability unless it’s brought to their attention. I am independent because I want people to see me instead of my disability. I have developed time management skills because I know that doing certain things are going to take me longer than most people, and I have to budget time in my day for those things. I have a great sense of humor because sometimes things just don’t work out the way that I think they will because of my disability, and often in those times, all I can do is laugh. I have developed responsibility through knowing that I have to work harder than most people to achieve the same outcome. I probably have developed many more qualities because of my disability that I’m not even aware of yet.

I may not have 100% success in showing these personality traits, but I’m a work in progress. I’m pretty happy with who I am and who I’m continuing to become. For the ways that my disability has shaped me, I like to think that it has made and will continue making me a better person.

I mentioned earlier that my milestone birthday helped me not only think about where I’ve been but also where I’m going. The truth is that despite having goals, part of the fun of life does not know what’s around the bend. However, I can use what I’ve learned about my past to see that things have turned out pretty well for me so far and that I can be hopeful about what the future holds. In this season, I hope that my thankfulness rubs off on a few more people despite disability or other circumstances. Life is truly what you make of it.

Finding the Miracle in the Mundane

2012-10-28T22:14:00.003-04:00

by Jenny Feldman

“So this is what you meant

When you said that you were spent

And now it's time to build from the bottom of the pit

Right to the top

Don't hold back

Packing my bags and giving the academy a rain check...”

- "It's Time" by Imagine Dragons

This could have been the end of my story - but it’s not. As I sit here and write this, listening to a little Imagine Dragons, I am surrounded by mundane normalcy. Piles of clothes sorted into darks, lights, and whites adorn my laundry room. I have carpools to drive, dinners to plan, and schedules to arrange. Bath time, homework, date nights, girls' nights, and emails to answer wait for me, as well. I have two amazing little girls, a fabulous family, and great friends, after all - and a wonderful husband who sometimes needs help with all these things, too (although buddy won’t usually admit it… ;) ).

Our little family at a recent wedding

But every September takes me back. September always sucks.
I hold it in. I count the days. I try so hard to JUST. GET. THROUGH.
“What happened???!!!”
“Will she ever walk again???”
“…Paralysis…”
"…Paraplegic..."
“…Likely permanent…”
“One day, there will be ‘bionics’…”
”Do you believe in miracles? I do.”

That last quote is comprised of words that were spoken by Dr. Ben Carson, during a conversation in my hospital room as he spoke with my family and me about what had transpired on September 28th, 1989. He is the Director of Pediatric Neurosurgery at a world-reknowned hospital in Baltimore, a position he has held since 1984 (at the age of 33). He is the youngest doctor to be appointed to such a position in the history of the hospital.

What happened to me was not his fault, as he was not my surgeon, nor was he in the operating room. He was brought in, a couple days later, to help my parents figure out what our next steps might be. Two years prior to consulting on my case – which is a spinal-cord injury sustained during what our family thought was a “routine” spinal fusion for scoliosis – he had made history at the age of 36, when he successfully separated conjoined twins. He has since performed similar operations for other children who come from around the world to be treated by him and his colleagues. He is kind of a neurosurgical rock-star. When he performed the surgery for the first time, Dr. Carson was the same age as I am, as I write this.

I was 13 when he and I met, and I was more than a bit doped up on various pain medications. A great deal of the conversation is lost on me, even to this day. But his words - "Do you believe in miracles?" - have stuck with me off and on throughout the past 23 years.

I think, at the time, lots of people around me thought that the “miracle” would be my walking again. After all, that is what I lost on that random Thursday in September, around 2:30 pm (or at least, I think that’s when they came out to talk to my mom about a “complication” while she paced in the waiting room). And for a long time, it’s something I worked hard every day to regain, even if it meant cruising along at an unstable snail’s pace with braces up to my hips and crutches or a walker. It was exercise, and it was good for my circulation. But realistically, it eventually became clear that walking was not going to be my main mode of transportation.

I won’t lie - it is something that I mourn, just a little bit, every day.

Me, rocking the 80’s like no other at my 8th grade graduation,

8 ½ months post-injury – I’m wearing braces and sneakers

because I wanted to walk up to receive my diploma

I mourn it when I have to get up very early in the morning, before most people, to do things to get myself ready for the day at that un-Godly hour. I mourn it when it takes the girls and me longer than it does Steve to get everyone out the door to school - or anywhere, for that matter. I mourn it when I have to consider every silly logistic of every place I go to make sure that I can park and get myself and my kids out, get in, get to a bathroom, etc.

I mourn it when, just two weeks ago, while driving home from school and eating a snack, Caroline finally asked me THE question: “Mommy, why can’t you walk?” Or when Molly casually mentioned to Steve, just this past week at soccer, “When will Mommy get better and not use her wheelchair?”

Yes, it has taken them six (or almost four) whole years (respectively), with a mom who has always used a wheelchair (since waaaaaaaay before their existence), to get around to asking. They are amazing. Meanwhile, they are both just grateful to hitch a ride on my lap on occasion. Maybe I am doing something right? ;)

Twenty-three years. Twenty-three years full of lots of stuff – of LOTS more ups than downs. I thank God every day for perspective.

Rehab with awesome therapists, (including my good friend Karen Whitesell, with whom I have stayed in contact and developed a great friendship throughout the years, and who also popped back into our lives just a few weeks ago at a Bruce Springsteen concert!) put me in a position to succeed. School, friends, summers (and other seasons), college, a career as a teacher, marriage, kids…life. It all came in these past 23 years. With the help of family and friends, I have ticked all the boxes I was supposed to tick, and many more. My life is a miracle, if you will.

You see, not everyone who is in my same situation lives the life I do. Some go through the same experience I did, but don’t have the same result. You can look at the variables that I had in my favor – a wonderfully supportive group of family and friends, amazing schools, a community with a huger-than-huge heart – and that changed things for me. All of these people and experiences have formed who I am and what I believe. I am a lucky girl. As such, I will always be someone who knows I have an obligation to live the way that everyone in my life has lived on my behalf. I will give back whenever I encounter a person who needs my help, whenever I can, just because I have witnessed and was raised to believe that this is the right thing to do.

My fabulous younger sisters and me, taken a few years ago

And that brings me back to Dr. Carson, who I “revisited” with a couple weeks ago when a movie about him was on Lifetime. Yes, THAT guy who came into my hospital room back on that random day in 1989 - when I was in a fog and couldn’t really even fathom where life was going to take me next - was there on MY flat-screen, in the form of Cuba Gooding, Jr. (who played him quite well, by the way!).

It was life in fast-forward. I was in my pajamas, face freshly-scrubbed, teeth brushed, and snuggled into my bed next to my sleeping husband of 10 years, with two daughters tucked into their beds down the hall and a Mommy's To-Do List a mile long. Twenty-three years after meeting him in person, I heard Dr. Carson (Gooding, Jr.) say to another patient (albeit through the script of some screenwriter who obviously saw the importance of those words) "Do you believe in miracles?"

I DVRed the movie so that Steve could catch a glimpse, in a small way, of a person who provided a sweet little ray of light during the darkest days I have faced in my life, thus far.

Ben Carson went through quite a bit on his journey to end up where he is right now, too. His life wasn’t easy, but he made it happen. He fought hard and never let his circumstances determine what he was capable of achieving. He became something better than many thought he would become.

And on that day, just after September 28, 1989, in a hospital room on the 8th floor of the Children’s Center, he passed that along to me. He probably doesn't even remember meeting me, but I most certainly remember meeting him, even under that fuzzy circumstance. Dr. Carson didn’t make a promise he couldn’t keep. I know for certain that he doesn't operate that way - figuratively or literally. I respect him for that. He could not promise me that I would walk again, but he believes in miracles and does what he can do to make them happen. And on that day, he thought great things would happen to me. His words were my miracle. I just didn’t know it yet, and I don't think anyone knew the form they would take.

You see, maybe the miracle for me isn’t that I will walk again. My life wasn't supposed to take the turn it did - but that's other peoples' deals to reconcile for themselves, and who's to say that another life would have been better for me, anyway? Life has to be what we make of the cards we have been dealt. As for walking - if it is to be, it will be. Maybe the gift for me is that my life is supposed to be the way it is. I am grateful for the fun and the chaos that come with being a daughter, wife, friend, teacher, and mother. I also need to be grateful for the challenges that come my way. That is what I pray for and about every day. They help me know just what I am made of, and are therefore a miracle, too. So many things in my life are perfectly imperfect. It’s just the way they are supposed to be.

It’s the mundane in my life that can drive this girl crazy. But the normalcy? I wouldn’t trade it for a hot second, because that is MY miracle. Apparently, Imagine Dragons saw it - I guess it just took awhile for me to get there, myself...

"It's time to begin, isn't it?

I get a little bit bigger, but then I'll admit

I'm just the same as I was

Now don't you understand

I'm never changing who I am...

...This road never looked so lonely

This house doesn't burn down slowly

To ashes, to ashes

It's time to begin, isn't it?

I get a little bit bigger, but then I'll admit

I'm just the same as I was

Now don't you understand

I'm never changing who I am....”

- "It's Time" by Imagine Dragons

Jenny Menser Feldman is a thirty-something woman who has been on the roller-coaster of spinal-cord injury, and has lived to tell about it! She welcomes the opportunity to help others who are following in similar footsteps. Jenny and her amazing husband Steve are proud parents to two beautiful little girls, ages 6 and 3 1/2. In her past life, she was a teacher, but for now, Jenny fills her days by being home with the girls full-time, as well as working with her small custom stationery business, which she owns with her best friend - Penny-Bear Printing (www.pennybear.com). She was injured in the Fall of 1989, and has been working ever since to make lemonade out of lemons! Visit Jenny's blog at http://our-perfectly-imperfect-life.blogspot.com. You may also email Jenny at jenny.m.feldman@gmail.com.

2012-10-14T18:04:00.001-04:00

Karen Roy Lets the Good Times Roll

Editor’s Note: You’re not beaten until you give-up. Although you may not know where you’re going or what you’ll eventually become, as long as you continue to improve and try to be better than you’ve been yesterday, good things start happening for you. Karen Roy from Baton Rouge, Louisiana, has proved that statement. A medical social worker today at Neuro Medical Center/Rehabilitation Hospital, Karen Roy has taken a journey to arrive at this position that demonstrates the courage of an individual and the never-say-die attitude that results in a successful life.

Karen Roy with her beautiful family in New Orleans.

My childhood was spent in Marshalltown, Iowa, but most of my life was spent in Louisiana. My mom, dad, little brother and I had a picture-perfect family. My dad had an engineering background and sold large valves to chemical companies and oil companies. In Louisiana, the chemical and oil business was and still is a major part of the economy, and supplying this industry with equipment was very lucrative. My dad worked for Fisher Controls, which he said was the Mercedes of the valve industry, and became vice president of this company. I went to a very small private school in Baton Rouge, and, although there were only 68 students in my class, I had a lot of friends because I was a social butterfly. I fell madly in love at 16 and dated that same boy for 7 years. He was with me when I got shot.

Karen had a picture perfect family and a great life.

All my life, I had wanted to go to LSU (Louisiana State University), even when I lived in Iowa. I wanted to be a psychology major because I really liked being with people and helping people. I always knew I wanted a course of study that would prepare me for a profession that would allow me to help and interact with people as a part of my future.

During my freshmen year at LSU, all my friends joined a sorority. I went through rush but my first four choices dropped me. My boyfriend was excited I didn’t get into any because he didn’t want me to be in a sorority, but that much rejection devastated me. After that, I had a lot of self-doubt and insecurities. So, I walked away from the sorority scene, and spent most of my freshman year studying hard and spending time with my boyfriend, who was a lead guitar player in a popular local band. I had a hard time keeping all the other girls away from him. I’d go watch him play and take the phone numbers out of his pockets that other girls put there. I had to defend my turf.

In September of 1987, I’d been back in school at LSU for a month for my sophomore year. My parents had rented an apartment for me, so my boyfriend, Mike, and I spent the weekend moving furniture. Afterward, Mike wanted to go to Tabby’s Blues Box, a well-known dive bar. Tabby was an old well-known African-American man and had played the blues for a long time with many famous people. If you wanted to go listen to authentic New Orleans blues, played by a famous blues musician, Tabby’s was the place to go. People of all ages and all races went there, even though it was in a bad part of town. I’d never been there before but Mike had been several times. I didn’t want to go to Tabby’s and we got into an argument. My parents even invited us to their house, but Mike didn’t want to go there. So, we went to the LSU football game and then on to Tabby’s. I had a bad feeling about going to Tabby’s. Today when I speak to people, I always explain, “When you have an intuitive feeling about something you shouldn’t do, don’t do it, because I did go to Tabby’s after that voice inside me told me not to go.”

As we were walking towards my car after leaving Tabby’s, we noticed that the driver’s side window had been smashed, and that someone had broken into the car. I asked Mike, “Shouldn’t we call the police to get a police report?”, and just as I finished that sentence, I felt someone grab my shoulders, and on the other side of the car, I saw a man grab Mike and put a gun to his head. As soon as I felt the man grab my shoulders, I pulled my shoulders forward, and the man holding me hit me in the back of the head with his gun. I fell to the ground but wasn’t knocked out. On the other side of the car, Mike started fighting with the guy who had put a gun to his head — both trying to get control of the gun. From the other side of the car, I heard the man fighting with Mike yell, “Shoot him, Doty. Shoot him!” The guy who knocked me down put his gun in my back and pulled the trigger. He then took my purse, which only had $2 in it, and shot at Mike, as the other guy screamed, “Shoot him, Doty!” Next, Doty went around the car and pointed the gun at Mike to force him to let go of the other robber Mike had been fighting. Then, they got whatever money Mike had and ran away.

At first, I didn’t realize I couldn’t move my legs. I was having trouble breathing. Not only did the bullet sever my spine, it also punctured my lung. Mike turned to chase the robbers, and I tried to tell him not to go after them. However, I really couldn’t talk or breathe very well. I don’t know how far Mike went, but the people in the bar who had heard the shooting came to help me. I remember lots of people standing around me and leaning over me. I thought I was going to die, so I said the Lord’s Prayer. I was about to black-out but I heard people screaming, “Don’t pass-out, or you’ll die.” So, I forced myself to stay conscious and awake.

The police arrived first and secured the area, and then the ambulance arrived. I later found out that police picked up Mike and interrogated him. They asked him questions like, “Did y’all come down here to buy drugs?” Mike was freaking out, because he didn’t know what had happened to me, or where I was. He kept telling them that he wanted to go to the hospital to find out what had happened to me. When I got to the hospital, the doctors put a chest tube in me so I could breathe. They discovered that the bullet had gone through the lungs and shattered my spine. When they tried to put the tube in my chest, I didn’t know what they were doing – I just knew the procedure really hurt. The doctors told my parents that if I lived through the next 48 hours, I would be paralyzed for the rest of my life, because the bullet had severed the T10 and 11 vertebrae in my spinal cord.

Within 48 hours after the shooting, the police caught the guy who shot me. First the police caught the guy the other attacker and that guy told the police the name of the shooter. The shooter was sentenced to 248 years in Angola Prison without any chance of parole or probation. When I went to court to testify, the scene was very strange. The shooter tried to stare me down like he was angry and threatening me. I realized that being angry with him wouldn’t help me, and remembered thinking, “Ok, it doesn’t matter how mad you are; you’re the one sitting over there in shackles, wearing an orange jumpsuit and facing a lifetime of being locked up. You have no power over me.” A friend of mine, who wanted to write a book about this whole tragedy, wrote my shooter letters. He always said he didn’t do it. However, there were witnesses, besides me, who said they saw him shoot me.

Three or four days after my surgery, when I was in ICU, a nurse was washing my hair and told me I’d never walk again. I remember my mom coming in for a visit after the nurse had told me I’d never walk again, and I was crying. She got upset about the nurse telling me in that matter-of-fact way. Of course, there’s no good way to find out that kind of news. Then a surgeon came in and told me I’d be paralyzed for the rest of my life. I thought to myself, “Buddy, pull up a chair and sit down for a second.” Even though everyone told me I’d never walk again, I didn’t believe that diagnosis completely for probably 3 years. I prepared for the worst and prayed for the best.

The gunshot severed Karen's spinal cord, leaving her paralyzed from the waist down.

After the shooting, I spent a week in ICU, a week in the regular hospital and 5 weeks in rehab. I was at Mississippi Methodist Rehab Hospital in Jackson and I hated it. Not because it was a bad hospital, but because I didn’t want to be there. I was angry about being in a hospital; I wanted to go home. They told me I would be in rehab for about 3 months, and I thought in my head, “Yes, in your dreams. I’m getting out of here.” The therapist would try to teach me things and I’d say, “Look, this isn’t rocket science; let’s move-on to the next thing.” I learned how to catheterize myself. I knew I could learn quickly. All the therapists had to do was show me one time, and I could do it. I wanted to get back home. I wanted to get back in school, and I wanted to finish the semester I’d started.

Karen was determined to walk again.

Mike had gotten an apartment with my mom when I was in the hospital so that they could both visit and stay with me at different times. Mike was really having a lot of problems with guilt. He knew I didn’t want to go to Tabby’s, he knew he had talked me into going, and he knew that if we hadn’t gone, I wouldn’t have gotten shot. Also, he walked away healthy from the attack and I was paralyzed for life. So, he was carrying a big load of regret. But, he was a security blanket for me through this whole tragedy. He helped me get back into school. My parents were a tremendous support. They modified their house to be wheelchair accessible. However, after living at home for 6 months, I was ready to get my own place. I’d just moved into an apartment at school so I had a taste of independence and I wanted it again. So, I got an apartment. The first thing I did was learn how to work out on every piece of equipment I could to keep my body in shape. Before the shooting, Mike gave me a bike for my birthday that I rode everywhere. I kept that bike in my bedroom for 3 years, thinking that I’d one day ride it again. Then I found a $15,000 bike that used electrical stimulation that enabled me to ride. I did everything I could do to stay active because I thought I might walk again.

The real reason I continued to ride the bicycle was to make my legs look good. I decided that if I would be in a wheelchair the rest of my life, I still wanted my legs to look as good as they could.

Finally, after 3 years, I decided that I wasn’t going to wake up one day, get out of the bed and walk. Working out as much as I did really helped, but I finally gave my bicycle away. Even though it was sad, I knew I’d be in my wheelchair the rest of my life.

After the accident, Mike and I dated for 5 years. We actually planned a wedding, but we always had an on/off-type relationship and part of me felt Mike only wanted to be with me because he was guilty about what happened. I couldn’t determine if he wanted to be with me because he loved me or because he felt that I was now his responsibility. As the wedding plans progressed, we sent out invitations, started getting gifts and hired the preacher, the caterer and the florist. However, I couldn’t fight the feeling that Mike was only with me because he felt guilty. I’d already called off the wedding one time due to this reason. Then, when we were only 4 weeks away from the wedding, he made a comment that made me think he wasn’t fully committed. My mom made a comment to Mike about sending the invitations, and Mike replied, “Well, that might have been a little premature.”

We got into a big fight and then I called my mom and told her the wedding was off. Although my bridesmaids already had had their dresses, I think they were glad I called it off. After I had canceled everything, I called Mike at work and told him. I said, “I know you’re scared, and there’s something not right about us getting married. Please don’t call me anymore.” I felt that if he was still hesitant about marrying me after 7 years, there was something really wrong with our relationship. I felt we needed to move-on with our lives. Mike was upset, because he didn’t think he really thought that I’d call the wedding off. To be honest, I didn’t think I would call the wedding off either, although I did.

Now, here I was. I’d just canceled my wedding, graduated from college with a degree in psychology and was working at a travel agency. I decided to have some fun and see what the world was like. I’d been in a relationship for 7 years and thought I had missed out on a lot. I thought no one would want to be with me because I was in a wheelchair, but I soon discovered that there was still a population of males who wanted to date me and getting a date wouldn’t be a problem. I dated about as many guys as I could and went a little crazy for about a year.

After my crazy year, I realized I needed to return to school, so I enrolled in the Master of Social Work Program at LSU. I knew I needed some kind of education where I could make a good living, because my dad had told me, “You need to figure out what you want to be. Right now, you’re spending about $40,000 a year (I think he was exaggerating) with the lifestyle you’re living. So that’s what you need to make.” But, I had a problem. When I was going through my wild spell, I got pregnant. I married the guy, even though I really didn’t know him that well because I’d always thought and believed that if you got pregnant, you got married. I knew that he wasn’t a good person before we got married. He had a reputation that preceded him, and I was scared to death of him. When my daughter, Caroline, was only 6 weeks old, I filed for divorce. I was a mess. I was in a wheelchair, divorced, had a kid and was going to school to get my master’s degree. I realized I’d be really heavy baggage for any man to carry, because I was heavy baggage for me to carry. So, my mom agreed to take care of Caroline while I finished school, and I worked nights as a hospital operator at a women’s hospital so that Caroline and I could get insurance.

One night when I was studying at a coffee shop, I noticed this good looking guy sitting a table away from me and started flirting with him. Neither one of us got any studying done because we were so busy flirting with one another. Finally, he got up and walked out of the coffee shop without saying a word. I thought to myself, “Karen, you dummy, you’ve wasted your whole night that you could’ve been studying. He didn’t even come over and ask for your phone number.” A few days later, I was out with some of my friends at one of the local LSU bars and saw that guy from the coffee shop on a date with an LSU volleyball player from Brazil, who was 6’3” and very pretty. She also could walk, didn’t have a baby and never had been married. However, Phillip spotted me, walked off from his date, came over to me and said, “You’re the girl who made me fail my finals.” He then asked for my phone number.

I don’t think he ever saw the tall, pretty volleyball player from Brazil after that night. He called me a few days later, and we started dating. On our first date, I found out he was 21, and told him I was 26.Then, there was a long silence. He thought I was about 23 or 24, and neither one of us had considered there was a 5-1/2-year difference. The next time he called and asked me out, I told him, “Look, I’m divorced, I have a baby, and I’m in a wheelchair.” I said, “If you don’t want to date me, I get it.” But, my past really didn’t seem to bother him. As the relationship progressed, there was one time where he really wanted to go out with his friends, and I didn’t want to go. I was all about being a mom, and now that I was one, I wanted to be a good one. I told Phillip, “I’m ok if you want to stay here with me and Caroline and watch ‘Barney’, but I also realize that you’re 21. If you want to go out and be with your friends, that’s fine with me.”

We both got past the age difference and my background. I graduated with my master’s degree in social work, and 2 months later Phillip graduated with an engineering degree. Six months later, we were married, and Phillip adopted Caroline. A few years later, we had a baby boy named Austin. Then, on Austin’s second birthday, I found out I was pregnant with Joseph. Today we have three children.

Karen and Phillip (on their wedding day) now have three beautiful children.

After I received my master’s degree in social work, I started working with pediatric and geriatric patients. Then I went into hospital social work and medical social work, doing counseling and case management. I work at the hospital with stroke victims and brain injury and spinal cord injury patients. I definitely think that my being in a wheelchair helps me in my line of work, because I’ve actually done what many of my patients are beginning to learn how to do. My wheelchair has made me very employable in the type of work I do.

I’ve got a great family; Phillip is an engineer and designs safety systems to keep chemical and oil plants from blowing up. Apparently I’ve married a man very much like my father. My children are 18, 14 and 12. One of the problems with having teenagers is that my life at home isn’t very different from my life at work. At the hospital, I’m a troubleshooter. If the patient at the hospital has a problem, the hospital calls the social worker (me). If a patient goes a little crazy, they call the social worker (me). So, when I get home from work, if any of my children has a problem, I’m the one they come to, and if my children go a little crazy, they go to me, so home isn’t really that different from work. My husband is more passive so I feel like I’m the heavy all the time. But, every once and a while, he’ll step in and solve the problems before I get there. I tell my children, when they want to be tough, “You may be strong, but I’m stronger.” I also say, “I’m not your friend; I’m your mother. You don’t have to like me. I really don’t like you right now, but you’re going to do what I say.”

When someone asks me what’s in the future for me right now, I say, “Tuition.” Right now my biggest dream is to get my kids through high school, and then we’ll start thinking about college. I look forward to pay raises in my future, and I hope to be able to travel in the future. One day I hope to have enough money to do things other than pay tuition for private schools and college. But, I love doing social work, and I plan to do this job as long as I physically can handle it. I’ve got a great life, a great family and a great job. I’m just taking life as it comes.

Written by John E. Phillips, this story is part of the Hometown Heroes series created by UroMed and is reprinted with their permission. Headquartered in Suwanee, GA [a suburb of Atlanta], UroMed is one of the nation’s leading providers of single-use catheters, urological and disposable medical supplies, and continence care products. UroMed was founded by Bert Burns, a former Paralympian and C6-7 quadriplegic. 20% of UroMed's customer care representatives are users of the very same products that they provide. For more information, please visit http://www.uromed.com or call 1-800-841-1233.

Diva for Hire

2012-09-23T22:06:00.001-04:00

by Bethany A. Hoppe

There are 48.9 million Americans with disabilities - that is 1 in 5 people has a disability. Of those...1 million are wheelchair users. For every 250 people, there is a wheelie person. October is Disability Awareness Month, with an emphasis on Employment. Jobs. Job-jobs.

Have you ever noticed that one of the first things humans tend to ask one another upon initially meeting, is "So....what do you do?"

In real conversation, that is a total downer. But it is animal habit, just the same, to try and find something in common with our conversation partner during happy hour beyond the obvious weather. Sometimes, this code of conduct gets skipped over in my personal encounters, and heads right to the "So....what's wrong with you?"

I wish-wish-wish I could toss out on the card table snarky answers to some of the inquiries:

"Were you born that way?"
"Hell, no! I was hatched."

"What happened when you were born?"
"The stork crash-landed...it was like...bad."

"Why are your legs smaller?"
"Oh...yeah, that. I'm a muppet."

"So, what happend to you?"
"What?! Something happened??"

Instead I smile inwardly at my own entertaining mind chatter, and then I take into consideration that they, just like me, are searching for a common thing to talk about. And since my blinged out diva chair is the hot pink sparkling elephant in the cocktail lounge...I cater and politely answer their questions, making sure I immediately follow it up with, "Oh - and I teach at a four year university," ensuring that although they didn't ask what I do, we can at least back track to the faithful get-to-know-ya standby question.

I wait for it....

And then smile, somewhat amused as they hair-ball choke on their martini olive, check their knee-jerk reactions along with their coats with the concierge as they process, and blurt out, 'You do??"

"Oh, yes," I purr, "I teach communication. Rhetoric. Conversation."

Prior to being able to have access to a snarky come-back to the hot pink elephant in the room, I was worried. When I was starting out after high school graduation, I came face-to-face with what felt like the consequences of my interests being in direct conflict with my actual physical ability. I also came face-to-face with the unwarranted thoughts of others in terms of what they thought I could or could not do, and even what they thought I should or should not do.

I struggled academically in high school at certain subjects - math was nearly a phobia - actually, it still is. I didn't think college would be an option for me, yet I also couldn't think of any jobs I might qualify for that actually interested me and fed my soul, which I was also hirable for.

When I say hirable, I don't mean discriminated against, like I was qualified but would simply not be in the running because of disability. I mean, even in light of the Americans with Disabilities Act, I just couldn't physically do certain jobs, and I was aware of it.

Ironically, on a Strong Interest Inventory Test (SII), my highest scores were drill sargeant, fighter pilot, film director, and teacher. Fighter pilot and teacher were very few points apart. I would love nothing more than being in the cockpit of a MIG, doing "Top Gun" air fighting. Had disability not been an issue, I probably would have gone into the Air Force. My creative side wanted to express itself in the Arts. In Left Brain/Right Brain quizzes, I am (in my own favorite words when it comes to gauging the world) exactly on The Fifty Yard Line.

But, instead of focusing on what could not be physically done within certain fields of work, despite a lion's heart of interest, I did not go for jobs I just could not do. When it came to the Arts...that was a somewhat different story. In auditions I always tried to go for roles that were logically do-able, yet didn't specifically call for a female wheelchair talent.

I can't tell you how many fellow actors, casting directors, workshop facilitators, agents, and producers loved vocally and characteristically what I did...but they could not reason out a way to cast wheelchair talent. On the rare occasion that tier one directors chose me over the chair...investors would not.

Back in the world of what most people consider job-jobs, the positions that were suggested to me as I contemplated my future were things I was not interested in. Computers. Secretary. Desk jobs. Receptionist. Telephone operator. Dispatch operator. Medical data entry worker.

In the event I might be required to select one of those jobs - yes - I could and would do it because it is a job regardless that they weren't my passions. If push came to shove, I knew that if I wanted any semblance of independence, money to pay bills, or a car to drive, I literally could not afford to turn down opportunity. This made me quickly realize that if my first dream-job of acting was virtually impossible in the late 80's, and my SII scores which indicated my intellectual military strengths weren't a physical option, I was going to have to go to school in order to become qualified for anything other than a desk job I did not soulfully want.

I often tell my students that once you get information into your head, no one can take it away. It cannot be intentionally erased. If the information happens to be of little importance to you, your brain will automatically defragment it and toss it out while it pays more categorical, labeling, memory attention to the things that do matter to your specific survival, environment, skill set, or personality.

It is my firm belief that the golden ticket for Rolling Divas everywhere, whenever possible, at whatever level...is obtaining some sort of training, certification, degree, or education. Ultimately, it is fabulous if higher education classes are aligned with your interests and passions. Whatever you learn, whatever your hands-on trained to do, whatever you read, whatever you hear, whatever you see...is afterwards forever yours.

It can be frustrating. I often felt that along my educational path that classes were too time absorbant, had too long of a delay before the benefits of it reaped a paycheck. On an emotional scale I often felt like going to school kept me from doing what I really wanted to be doing. I frequently felt sidetracked from destiny. I often resented the fact that semester after semester, workshop after workshop, I was tunneled into someone else's time frame, expectations, and theory.

In the end - I became a teacher. One of my strong suits on the Strong Interest Inventory. Something that allowed me to be creative. Something that allowed me to earn a living. I love my job. I adore my students. I always want to know and learn more about the world around me. I love to intellectually explore.

Though, I am not your typical academic by any stretch of the imagination.

As my schedule allows, I am currently working towards a graduate certificate in Women's and Gender Studies. At this time, I am not in a class, as all of the offerings conflict with my teaching schedule, and I have found myself gripping some fabulous live wires in terms of projects and endeavors I am finally able to pursue.

And there it is - I am only able to pursue them, because at long last...my other educational degrees have brought me to a point where I can have a job-job that funds my fantasy job(s). I am finally entering that extraordinary phase of long term gain for the years of financial sacrifice, time, and energy put into studies and pro-bono work.

Many people, when hearing professors emphasize education, automatically think we are talking about advanced degrees, and taking classes at four year universities. And frankly, with me, that is not the case.

Why?

Because particularly for women with disabilities - for the assurance of their independence, their mobility, their safe living environments, their physical and social health...any amount of training (whether on the job, adult classes, technical certification, associates-bachelors-masters-doctoral degrees)...matters. Simple as that.

Statistically, women with disabilities are in significantly worse condition than men with disabilities - even when compared to our able-bodied female peers experiencing inequality among able-bodied males. According to the Bureau of Labor Statistics, 15% of all American households had a household member with a disability. Of that, 15% are male, and 14% are female. Disabled men, ages 16-65 recorded in August 2012 13% unemployment. Disabled women of the same age group recorded at 17.2% unemployed.

As women we're all in the same boat when it comes to pay, healthcare, safety, and progress....only women with disabilities are in deeper than their standing gal pals. What this means is that if there is any demographic (which covers race, religion, and orientation) that needs to obtain the keys to happiness, freedom, and success....it is the Rolling Divas.

According to the Social Security Administration, 83% of the working disabled live with relatives. Their median income is $13, 323 ~ half of their standing peers. Women with disabilities are 23% more likely to live in poverty without an education or job training compared to men's chances at poverty conditions at 15% with lesser education and training.

So, girls? To climb out of poverty conditions, you need more training than the guys do. And there are fewer of our demographic comparatively.

Knowledge is Power. Power is generally Money. Money is Freedom. Freedom is Creativity. Creativity is Healthy. Healthy is Living. Living is Life. And Life is Good.

Go to a career counseling center - and if the associate that helps you is a total bitch and says you're not able to do anything - dump her and find another consultant to work with who gets it. Utilize your local rehab center, independent living center, office of vocational rehabilitation, temping agency, or local business owners and find yourself a class, a certification, an apprenticeship, an on-the-job training opportunity...a skill set that matches your passions...and head out the door. Grab the opportunity and run with it ladies...because we need to close the financial, social, and occupational gap between men who roll...and women who roll.

Just like our able-bodied peers, women are making strides around the world at different paces.

You are a woman first.

Go, Diva, Go!

Bethany A. Hoppe is a speaker and author who works to promote women with disabilities in mainstream media, who has a disability herself...Spina Bifida. She holds a Masters in communication studies and teaches at Middle Tennessee State University. Bethany writes Raspberry Vogue, a lifestyle blog of a wheelchair diva (www.RaspberryVogue.com).

Don't Break my Legs...Handle with Care!

2012-09-04T21:05:00.002-04:00

by Jenny Addis

In the beginning of the year, I had the opportunity to fly out to Faulkton, South Dakota for business. Along the way, I ran into a major obstacle: the airline damaged my power wheelchair. Due to this unfortunate event, I discovered some disturbing information that I’m sharing with our mobileWOMEN readers in my "Don't Break my Legs...Handle with Care!" campaign.

I travel frequently and yet, each time I take to the skies, I realize there is a possibility that something may happen to my wheelchair. Nonetheless, I cannot allow that fear to prevent me from flying. In 1997, at the age of 24, a tragic drunk driving accident left me paralyzed from the chest down, stripping away my independence, livelihood, and career. It took time, but eventually I became focused on taking my unfortunate experience and turning it into something positive by beginning a new career. At this point, traveling became a necessity in my life, career and overall independence. Now when I get on an airplane, I only hope that my wheelchair arrives back on the jetway in one piece, wherever my destination is that day.

On this occasion, we landed back in Minneapolis and, as I was waiting on the airplane for the personnel to bring my wheelchair up from stowage, I realized that it was taking quite a long time. Long waits in the past were never a good sign.

My instinct was correct; my wheelchair was damaged. The mishap occurred some time during the loading and unloading process into the aircraft from Milwaukee, Wisconsin or in-flight to Minneapolis, Minnesota, or all of the above. When I was finally escorted off the aircraft in Minneapolis, there were numerous employees standing around my broken wheelchair doing literally nothing. They were lost, which wasn't shocking, because throughout every one of my encounters of wheelchair damage by an airline, one common denominator was a lack of knowledge regarding how to handle this type of situation and empathizing, genuinely, with me, as a consumer.

To make matters worse, Minneapolis was just one leg in my four-flight trip. In those four flights, there were only two employees empathetic towards my situation: the manager who handled my claim in Aberdeen and a loading department employee who brought my damaged wheelchair up from stowage in Minneapolis. Interesting point to make is that I learned both employees have a loved one who is a wheelchair user.

I can't help, but wonder...Is it possible to have empathetic, sincere and genuine employees and management? If so, does that mean they have to be faced with adversity on some level, in order for those qualities to shine through?

My wheelchair was found with luggage on top of it and was lying on its side in the aircraft at least twice, which I found out later from my mobility company is a big “No-No!” To me, whoever put luggage on top of my wheelchair has absolutely no respect for the value of this piece of equipment, not only on a monetary level, but most of all, the physical and emotional connection it serves in its owner's life. In my opinion, the majority of airline personnel and management observe a damaged wheelchair as an inconvenience to the consumer, but something that can be fixed...replaced. The damage is taken very lightly, which is completely inappropriate. Our wheelchairs are made specifically for our bodies, function and physical limitations. The bottom line is that a wheelchair cannot always be fixed on the spot, can include months of waiting and may cause secondary repercussions.

When we landed in Minnesota, the manager didn't show empathy, but rather wanted to move us along as quickly as possible. He gave us a food voucher, which I felt was an insult, because when a consumer is looking at her broken wheelchair...her broken legs....her now stolen independence….a food voucher isn't going to make it better, especially since my wheelchair represented a monetary value of over $30,000.

On my way back to Milwaukee, my wheelchair couldn't be pushed manually, so the loading manager became involved to help figure out a solution on how to transport it down to stowage and safely onto the aircraft. I explained what was broken, visually, on my wheelchair, but without having it assessed, it was unclear to total damages. My main concern was insuring that when I landed in Milwaukee, late that night, I wouldn't have more damages to deal with. Sadly again, I encountered a manager with a bad attitude. He made a verbal scene in front of the other passengers pointing fingers as to why we were running late. Carrying the wheelchair wasn't convenient, but at that point, was the only option. It certainly didn't deserve a negative attitude and remarks on management's part. We needed a resolution. As a consumer, with clearly a position to be upset about, I was able to keep my composure and avoid making a scene in front of the other passengers. What this manager forgot was that I was a paying customer, disabled or not. They broke my wheelchair and as an airline were responsible for those damages.

At this point, I made an executive decision. I offered my caregiver's assistance. Shaina drove my wheelchair down to stowage. What was about to happen next was shocking and disturbing to us both.

I was now sitting on the jam-packed aircraft with an airline employee awkwardly holding me up in my seat. As a C5-C6 quad, I can't hold my torso up, independently, without flopping over like a wet noodle. I needed complete assistance to just sit. The employee was doing his best, but his lack of knowledge to my needs was difficult on me. I felt demeaned in front of the other passengers. I was falling into other's seats and laps. The frustrating point here is that I should've had my caregiver by my side, as she understood my needs; not to mention, I was paying her to assist me. Instead, she was in the stowage area doing the airline personnel's job.

While Shaina was in the loading area, she observed with confusion as four men struggled to lift my 350-pound plus wheelchair into the aircraft, as carefully as possible. The space designated to stow my wheelchair wasn't large enough. My wheelchair sustained scrapes and damages immediately before the aircraft was even off the ground. My best analogy is that these employees are being asked to take a square and fit it into a circle. It can't be done, not safely…not without a distorted square in the end...in my case, a damaged wheelchair. No wonder why the employees are frustrated, acquire bad attitudes and it gets taken out on the consumer.

Usually, I'd take a straight flight to my final destination, because there are only two opportunities to break my wheelchair versus four. In this case, Wisconsin didn't offer a straight flight, so I had no options. I can't help but wonder...Why? Why should a disabled consumer have to worry about possible damage to their wheelchair and direct flights to begin with?

As a consumer, disabled or able-bodied, when I purchased my airline tickets, I assumed that all airlines take every possible measure to be certain my wheelchair and equipment are being protected while in their possession...prior to take off, loading and unloading, take off, in-flight, landing and at my final destination. I assumed the aircraft is equipped to properly transport an electric wheelchair and that it's strapped down in the stowage area. I also assumed that every airline has intentions to give the best customer experience to all its passengers, disabled and able-bodied, throughout the entire flight. Due to experience...I know for a fact that these areas are lacking and inadequate; my experience is not isolated.

As soon as I arrived home, I met with my mobility company to have my wheelchair assessed. We then found the major damage: this type of wheelchair cannot be on its side...ever! The manufacturer will not cover any repairs on a wheelchair that has gone through that kind of trauma. Due to the "mechanical" damages that may occur…if not now, then later.

Ultimately, my wheelchair was deemed unsafe and irreplaceable by my mobility company and the manufacturer. I was fitted for a new wheelchair immediately. It took two months to finally receive my new wheelchair. Apparently, my claim slipped through the cracks, so it took longer than usual to process my claim. Due to the frame damage and seating system being compromised, I was fighting posture and pressure issues, which I'm still fighting today.

Why are these airlines accepting our money and making us believe they can transport our bodies and equipment safely? I wonder how many people don't make claims, because the damage to their wheelchair wasn't visible. They then go home and the damages arise a week or month later. Are they making so much money cramming us into the aircraft that it doesn't matter if they damage a $30,000-$45,000 wheelchair?

How are these airlines getting away with not accommodating wheelchair user's equipment? It should be disclosed and brought to our attention that their stowage area is not large enough to transport the equipment during the ticket purchasing process. I'd have more respect for an airline saying, "I'm sorry, but this particular aircraft CANNOT accommodate your size wheelchair, but this particular flight and aircraft CAN accommodate you and your wheelchair safely." Would it inconvenience me? Of course, but it inconvenienced me more having a damaged wheelchair during my layover, connecting flight, final destination and trip as a whole.

My Solution

I've thought long and hard about solutions and how airlines could avoid wheelchair damage and these unwelcome experiences from happening to their disabled consumers.

Here are a few of my thoughts...

* Eliminate the first row or bulkhead seating altogether. Use a portable ramp that'll allow us to drive our wheelchairs onto the aircraft and store it at each airport or right on the aircraft.

* For every wheelchair space are four designated tie- downs, latches and straps built right into the aircraft floor. They are reused for each and every flight that a wheelchair is on board and can easily be removed if needed.

* For example: In my accessible van, the ramp allows me to roll right in and the passenger seat is removed, which allows me to sit up in front when traveling. There are four tie-downs that are built directly into the passenger side floor. My wheelchair is strapped down in case of an accident or something as simple as slamming on the brakes occurs. My wheelchair and I are protected during transport. These four tie-downs are minimally priced in comparison to the cost of repairs or a brand new wheelchair.

* Those uncomfortable aisle chairs that a quadriplegic has an incredibly difficult time stabilizing themselves in could be eliminated altogether. The need for extra personnel to assist with transferring passengers into their seats is eliminated. Boarding time would be minimized. Most importantly, the consumer's wheelchair stays in their possession.

Jenny's damaged wheelchair addressing
the "Don't Break My Legs...Handle with Care!" campaign

These positive changes would decrease in wheelchair damages during the loading/unloading processes. They would also lower the number of injury claims made by airline personnel. The lifting hundreds of pounds in confined areas would be minimized as well. It's a difference between tens of thousands of dollars versus hundreds of dollars. I don't think you have to crunch numbers to see the amount of loss the airline is incurring at the end of the day. Overall, it'd heighten the employee's morale, more cost effective to the airlines and an all-around better customer experience.

It's important to point out that all employees, including management and on an owner's level, need to be trained on how to speak respectfully to disabled consumers and how to handle and treat each passenger's equipment, wheelchairs and baggage properly. Employees need to truly understand the value of the equipment, not just monetarily, but on emotional and physical levels, as well.

Obviously, I was disappointed with my broken equipment, but as an individual who cares about customer service, I was extremely frustrated and disappointed with the airline's management and the way my experience was handled as a whole, which is why I am focused on bringing this encounter to everyone's attention. In order to resolve this in its entirety, we need to begin with changing the attitudes of these airline's management, their owners, CEO's, directors, presidents and society, just to name a few.

This experience inspired my "Don't Break My Legs...Handle with Care!" campaign. I plan to shed some light on this overlooked issue. I proposed an opportunity to the airline responsible for my recent wheelchair damage, shared my experience and challenged them to take charge of their company. I gave them a unique opportunity. I offered my services to give themselves and their employees the gift of a lifetime...education and awareness...from someone who truly understands. Knowledge is Power! I believe the owners and heads of these airlines must educate themselves in order to make the needed changes necessary within their company to be as successful as possible on all levels. There's more to this solution than just covering my wheelchair damage expenses.

All too often I hear from the airline's personnel that they have had special training on how to handle wheelchairs and wheelchair users, which is a necessity, but in my opinion, unless you are hearing it from the wheelchair users themselves and truly understand what their wheelchair represents, these employees are not getting the information and the facts needed to understand the magnitude behind the words "Don't Break My Legs...Handle With Care!" There are too many stereotypes and misperceptions of wheelchair users as being individuals who are not contributing to society, whose lives are being spent at home or in a facility, definitely not frequent travelers! These assumptions cannot be further from the truth because, today, wheelchair users are successful and on the go. We are looking beyond our disabilities and conquering the world!

My new wheelchair was nearly $45,000! That's a lot of money, BUT (and a huge BUT) there is not a monetary dollar amount that can buy my legs, which is what my wheelchair has become. It's my independence. My freedom. In this day and age, there is no reason why, as a society, we shouldn't be better than this. As disabled consumers, we have the same rights and freedoms as the rest of world, which means accessibility on all levels, whether getting into a building, traveling by land, sea or air. Again, I can't help but ask the question...why?

Here's a great informative article on Traveling Tips I'd like to share with my MW Readers. Go to: http://www.disabledandproductive.com/articles/disabled-travel-how-to-maximize-your-trip-and-minimize-your-worries-when-flying-with-a-wheelchair/.

Here are a few of my favorite personal flying tips:

* We are our own best advocates. You know the condition of your wheelchair and equipment best. Make an assessment prior to loading, so damages are easily detected at your final destination. This rule of thumb is universal with any type of travel. If you are limited with your ability to assess it yourself, then direct someone to do it for you.

* Prior to traveling, check with your Mobility Company and manufacturer for any special instructions on how to handle your wheelchair, batteries and equipment properly.

* Remove any moveable parts on your wheelchair, such as the hand controls, seat cushion and other accessories, during the boarding process. These parts and accessories will stay in your possession until landing and your wheelchair is waiting at your final destination. Reattach all removed items, prior to getting back into your wheelchair.

* Don’t be afraid to ask for assistance when traveling alone.

* Keep a few rolls of Duct tape in your possession at all times--a roll for each airport involved with your travels. After boarding the aircraft, tape every moveable part of your wheelchair to any supportive area, such as cup holders, arm brackets and foot rests. Give a roll to the personnel responsible for taking your wheelchair and equipment down to stowage and direct them to reinforce any moveable parts, at risk of sustaining damages, prior to loading and in-flight.

* Keep in mind that not all damages are external and visible. If you have any reasons to believe your wheelchair or equipment has been damaged or handled inappropriately, ask to speak to a manager immediately. When flying...ask for a Complaint Resolution Officer or a CRO.

Overall, traveling, whether it's by land, sea or air will be a challenge for anyone with any type of mobility complications. Don't let that stop you from being active and experiencing the world. That's just not fair to yourself. It's important to be proactive and do your research, so that your traveling experience is as successful as possible.

How do we move forward without these unnecessary occurrences, such as wheelchair damages, from happening? The airlines must accommodate for the sizes of wheelchairs in order to make the necessary changes happen to coexist in the disability world.

Update: The airline did not accept my offer. Instead, they sent me a gourmet gift basket and a $100 voucher to fly with them on my next flight. I've learned throughout this investigation that these airlines do understand what they are doing and they really CANNOT accommodate our wheelchairs. Why are they not sharing this information with us when we purchase our seats and allow us the option of taking on the risk of wheelchair damage or not? Shouldn't that be our right?

What do you think? I want to hear from you and your suggestions. Let's make these airlines understand these words..."DON'T BREAK MY LEGS...HANDLE WITH CARE!"

I wanted to give a quick shout out to MW Reader, Alexee Denbow:

Hey Jen!
I've read your article, “Hello World!” (http://www.mobilewomen.org/2012/03/helloworld.html) before and every time I read it I tear up...because it’s so much like my story, it’s unreal! I love that you share your life with us (I share but I'm no writer lol). People sometimes just need a reminder that we are not alone!! People tell me all the time that I'm an inspiration and I sit and wonder "why me" sometimes, but when I read your story I understand it. It’s JUST inspiring that’s all! ;)

Hey Alexee!
Just by reading your comments (writer or not) I can tell you are an inspiration!! If you are taking encouragement, motivation and inspiration, from any MW writer, shows that you have the initiative needed to empower your own life. In turn, live a healthy, positive and thriving life despite the adversity you face each day. That's inspiring Alexee! Thank you for being an inspiration and a dedicated MW reader!

Sincerely,

Jen

To find more "Hey Jen!" columns, visit www.mobileWOMEN.org/heyjen. Remember, nothing is too personal in my book, so send your questions to “Hey Jen!” at: mobileHeyJen@gmail.com! Learn more about Jenny at www.InspirationSpeaks.Me.

Tatyana McFadden: Pushing Expectations

2012-08-10T15:57:00.002-04:00

by Amy Saffell

One wouldn’t expect that a girl born in Eastern Europe with a disability, denied proper medical treatment after birth, abandoned by her family, and sent to an orphanage so poor that they couldn’t afford a wheelchair for her to get around in would become a 3-time Paralympian. After all, society doesn’t even tend to expect much from a child with a disability born in Middle America to loving parents. Fortunately, Tatyana McFadden was born expecting from within nothing less than to thrive.

Challenging Early Expectations

Tatyana’s story begins in St. Petersburg, Russia where she was born in 1989 with spina bifida. That wouldn’t be considered a life-threatening disability in the United States, but it was a much different situation in St. Petersburg. In Russia, and in many parts of the world, people with disabilities even today aren’t respected as other citizens are, much less in 1989, often not living among the rest of society and not having access to proper medical care, resulting in a poor quality of life and a shortened lifespan. In the case of those with spina bifida, sufficient medical care is vital because babies are typically born with an open spinal column that needs surgical closing right after birth. Tatyana, however, had to wait three weeks before that surgery was performed, which would typically lead to further nerve damage and life-threatening infection. By all accounts, Tatyana shouldn’t have survived those early months, but even in infancy, her will to live was stronger than the unfortunate circumstances around her.

Tatyana visited Russia in 2011 to share her success
with the orphanage in which she was raised

Like many children born into a society that did not accept disabilities, Tatyana was abandoned by her family and sent to live in an orphanage after that spinal surgery. The orphanage where she lived lacked even the most basic of needs for the children. Tatyana was paralyzed from the waist down, but the orphanage couldn’t provide her with a wheelchair. Still not deterred by her surroundings, Tatyana found a way to get around. For the first six years of her life, Tatyana used her arms as legs and her hands as feet to walk where she wanted to go. Getting around this way may seem like a huge physical obstacle, but Tatyana simply didn’t know anything different, nor did she know what might be possible in a supportive environment outside the confines of the orphanage. Little did she know that the arm strength that she was born with and would build by getting around this way would suit her well in just a few years.

When Tatyana was six, her life changed forever. Deborah McFadden, who was serving as the commissioner of disabilities for the US Health Department, visited her orphanage as part of a business trip and immediately fell in love with this little girl that she had met. They formed a bond, and Deborah decided to adopt her and to bring her to live in the United States. Tatyana would finally have a loving family of her own. However, for Tatyana, being adopted meant even more than having a family; it was the chance to have more opportunities and better medical care. After six years of isolation, she would finally have her first wheelchair and be free to experience the world around her.

The plan for a better future for Tatyana didn’t immediately come to fruition in the way that Deborah had envisioned. Even in Russia, it was evident that Tatyana was very weak and sickly, but when she was brought to the United States and had a thorough medical evaluation for the first time in her life, it was discovered that, after years of malnutrition, Tatyana was severely anemic and underweight. Doctors thought that she only had a short time to live, and even if she lived longer than their initial expectations, she probably wouldn’t live past her childhood.

Deborah, however, couldn’t give up on her daughter. Tatyana had certainly proven that her arms were strong, but the rest of her body needed to catch up in strength. Deborah thought about ways that Tatyana might use her arm strength to become stronger overall, and she decided to enroll her in sports. She started taking swimming lessons at a pool near her home, and Deborah’s hunch was right. She excelled as a beginning athlete, and her health dramatically improved. A year after she came to the US, she joined the Bennett Blazers, a Baltimore area wheelchair sports organization. Like a lot of kids, she tried every sport that she could, only Tatyana succeeded at pretty much everything that she tried. No longer having to use all of her muscle strength just to get around walking on her arms, she began to channel it into sports instead. What could be thought of as one of the most tragic of her circumstances just might have been the training ground for her to triumph in the sports world.

Defining her Own Expectations

Early in her teens, it became evident what her long-term sports passion would be: wheelchair racing. As an 8th grader, she saw the Olympics on TV and was so captivated by the competition that she knew that she wanted to feel the thrill of having a medal around her neck some day. Although her mom kept her involved in other sports because she wanted her to be a kid and not feel pressure to take things too seriously too early, her career in racing took off quickly. “Naturally, I just fit the sport really well,” Tatyana says. Her first big meet was Junior Nationals in 2001, and her passion to compete was solidified.

At the age of just 14, she qualified to compete in the 2004 Paralympic Games in Athens, Greece. She was 15 when the Games were held, making her the youngest member of the USA track and field team. It would be her first international competition, but she made her presence known by surprising everyone, winning silver in the 100 meters and bronze in the 200 meters. She says that she “didn’t know what to expect,” which may have helped to take the pressure off in such a high-profile event. However, winning a silver medal made her realize that she could have a long future in the sport if she made the commitment to work at it. “When I won silver,” Tatyana says, “watching that flag rise, I knew that I wanted that feeling again. I was willing to make the changes in my training, in my eating, and in my gym workouts to get there.” And she did. In Beijing in 2008, she won four medals, silver in the 200 meters, 400 meters, and 800 meters and bronze in the 4x100 relay.

Tatyana loves to sprint, and her strong shoulders
help her to have success on the track

As she was building her athletic career, Tatyana's sense of self also grew. She has never wanted to be known as disabled, saying that she “looks at [herself] as a person who is normal because people with disabilities have the opportunity to accomplish the same things, if not more, than other people.” Rather, she wants people to know her for her personality and her athleticism. She sees herself as an athlete, period, with no need to highlight her disability. The confidence in who she is has a way of rubbing off on her friends and family, too. She tells a story about when she was younger, and her mom drove her and some friends from school to the movie theater. When her mom went to park in handicapped parking, her friends were confused why they had parked there. They had never before considered Tatyana as having a disability and the differences that might make in her life from theirs because Tatyana herself refused to believe that her life was really that different.

It would take a special push to convince some of her capabilities. Ironically, while she was earning medals on the international stage, she wasn’t originally even allowed to compete for her own high school. Those associated with her previous competitions understood the importance and competitiveness of wheelchair racing, but she realized that making people in the able-bodied racing world see the need for sports for people with disabilities was difficult. She wasn't included in her high school’s race lineups out of fear that she might interfere with the other runners and out of an overall lack of knowledge about wheelchair sports. “All I wanted to do was to participate. I just wanted a normal high school experience of playing sports, and I also knew that was how I could make friends,” she says. She was a plaintiff in a landmark case, first in her county and then with the state of Maryland, where a judge ruled that wheelchair athletes could race alongside their high school peers, and other states have since made similar changes. She calls the trial “a very tough process” that drove some of her classmates away, thinking that she was making too big of a deal out of her situation, but, in the end, she knew that her true friends would stick by her and that she had the opportunity to positively influence the lives of countless other student athletes with disabilities like her. She knew that other people had been told “no” in the past and says that “it takes a certain personality to take on a case like that. I don’t like hearing no, so I wanted to be involved in changing the rules.”

She continues today to advocate for equal opportunities in sports for people with disabilities. Not only has her advocacy work taken her back to working with the kids involved in Bennett Blazers, to The White House, and even back to the Russian orphanage where she spent her early childhood, but also she has seen the effect that her work has had even within her own home. Tatyana’s middle sister, Hannah, a junior in high school, is a multi-sport athlete who is an amputee and also uses a racing chair to compete. Because of Tatyana’s work, Hannah can now compete on her high school’s track team without discrimination.

After high school, Tatyana took her racing skills to the University of Illinois, going from a small group of local racers in Maryland to a world-class wheelchair athletics program coached by racing veteran, Adam Bleakney. Collegiate racing has proven demanding for Tatyana, but considering where the hard work has brought her, it has all been worth it.

Tatyana crosses the finish line to win the New York City Marathon

Expecting Gold

Tatyana heads to London to compete in Paralympics as a gold medal favorite. The gold medal hopefuls of the Paralympics haven’t traditionally had the same household name recognition as that of the Olympics, but Tatyana is at the forefront of a new wave of publicity for Paralympic athletes. She notes that many of the Games’ sponsors this year are referring to them as “The Olympic and Paralympic Games” as one unit rather than solely mentioning the Olympics. Since these Games will be her third, she has seen firsthand that sponsors and the public are starting to take note that Paralympic athletes display the same athleticism as their Olympian counterparts. She has been nominated for an ESPY award two years in a row, making time to attend this year’s awards show, where she sat alongside fellow nominees like LeBron James of the Miami Heat, Heisman Trophy winner Robert Griffin III, and New Orleans Saints quarterback Drew Brees. She’s one of only a handful of athletes, both Paralympic and Olympic, to be included in Team BP. She is featured in BP television commercials, on their trucks and billboards, and in a massive online campaign that have been seen by millions. She even has her own Topps trading card. Tatyana is quick to talk about how proud she is to be included in these public campaigns, but her happiness has nothing to do with the personal benefits of the extra attention. Instead, she considers the opportunity for the public to see what Paralympic athletes as a whole are all about as the greatest honor of being involved. “It’s wonderful for the Paralympics in general, and I’m honored to be involved. Team BP has been really supportive and hasn’t treated me any differently than anyone else,” she says.

Aside from the media attention, Tatyana is also involved in two groundbreaking developments at the competition itself. First, Tatyana will be competing in the 100, 400, 800, and 1500 meters, qualifying in every event that she competed in at the Paralympic Trials in Indianapolis earlier this summer, as well as the marathon. She will be the first person to compete in all five of those events in the history of the Paralympics. Originally a sprinting specialist, Tatyana conquered the longer distance in 2009 when she got her first major marathon win at the Chicago Marathon, the same marathon that qualified her with a win this year to race in the London Paralympic marathon. In addition, not only will roughly half of her University of Illinois teammates also be competing in London, but also her sister, Hannah. It is the first time in Paralympic history that sisters will be competing against one another, which Tatyana and Hannah will do in the 100 meters.

Tatyana poses on the red carpet of the ESPY Awards

Training for such drastically different races has been a new challenge for her. She spent last fall focusing heavily on the marathon, and she has spent this spring focusing on the shorter track distances, with work in the gym year-round. She often has two practices a day. It sounds like a lot of work, but knowing that Tatyana will have seven straight days of competition, sometimes two races in a day, from September 3rd through the end of the Games on September 9th, aggressive and focused training is simply what it takes to succeed. (The International Paralympic Committee has announced an unprecedented 2012 Paralympic media campaign through their website, www.paralympic.org, including nearly 600 hours of event coverage so that fans from around the world can watch the competition.) For Tatyana, it’s all a labor of love, as she has come to love racing in general, regardless of the distance. She is confident going to London this year, citing more experience, knowledge of her competitors, and an intense training regimen as her personal assets this time around. She’s fiercely competitive. She realizes the opportunity ahead of her, and she wants to be ready to seize the moment.

After London, she’ll keep racing, but she’ll turn more intense focus on school. She is a junior Human Development and Family Studies major with hopes to become a Child Life Specialist in order to help kids and families who face the familiar road of medical challenges. Regardless of her future, sports will always hold a special place in Tatyana’s life. She remarks that sports “is what saved my life, and it has brought me so much independence. I can travel around the world. I can go to college and live on my own. It’s brought a drive and a determination in me that I don’t know that I would have had otherwise.” Drive and determination have been two of the defining characteristics in Tatyana’s life. From a poor orphanage in Russia to the international athletic stage, she has risen to excel at both sports and life, challenging herself and those around her to expect limitless possibilities in anything that we choose to believe is both possible and worth putting every ounce of effort into achieving.

Follow Tatyana’s progress, and cheer her on throughout the Paralympics at www.paralympic.org and through social media at Facebook (www.facebook.com/ParalympianTatyanaMcFadden) and Twitter (@TatyanaMcFadden).

mobileROMANCE: In Love but Worried

2012-07-24T19:57:00.001-04:00

Dear Tiffiny,

I have been in a relationship with my boyfriend for about five months now. We met online and, in the beginning, he seemed to be alright with my wheelchair situation, but now I am not so sure. Things are going pretty well... I've met his parents, friends, except I'm starting to worry that my limitations may be getting on his nerves.

He's really sweet, and that's part of the problem. I'm afraid he wouldn't tell me to what he was really feeling even if I asked him. What can I do to make sure he's not starting to get annoyed with my disability (I would hate for it to get the point that he gets so fed up that he just walks away)? Thanks for taking the time to help me.

Sincerely,

In love but worried

----------------------------------------------------------------------------------------------

Dear In Love But Worried,

What you're feeling is one of the most common things someone with a disability feels when they're dating a partner who's able-bodied - are we good enough and will our limitations eventually drive them away. To be completely honest, they could, and this has happened to many relationships, but that's life, it gets messy and sometimes hearts get broken.

When you have a disability, preparing yourself for rejection is something we always have to be ready for. I'd hate saying this (because I wish it wasn't true), but the fact of the matter is that it is true. But this shouldn't be an excuse to never date. There will always be some disappointment in life, but the risk is always worth it, and that is especially the case in relationships. No one wants to live alone for the rest of their lives, so I applaud you for getting out there dating despite everything.

What makes you think he's getting sick of your limitations? Has he said anything in particular or are you possibly being paranoid? When the summer months come, there may be more activities than usual you can’t do together, and you'll have to make sure (especially when you start dating) that they know it's okay to still get out there into the things that they like to do. One of the main concerns able-bodied people have when dating someone with a disability is this very thing - so they don't want to feel guilty.

Make sure you give your partner permission to enjoy their body still. Tell them to still get out there and run, golf, play hopscotch, whatever they can do that you can't. And make sure you say it with a smile so really they believe you.

Five months is not that long of a time to be together, but it is usually a long enough time for someone to figure out if they think they're ready to be with someone with a disability for a long-term commitment. Maybe it's time for you to sit down with your boyfriend and have an honest conversation about your concerns.

Remember, every relationship - whether there's a disability involved or not - always hinges on good communication. Start talking to him. My hope is that you're just being paranoid, but please keep me posted.

Love hard!

Tiffiny

To submit your question to Tiffiny, email tiffiny@beautyability.com.

When Self-Confidence and Success Allude You

2012-06-18T21:23:00.002-04:00

by Amy Saffell

Self-confidence is a funny thing. A lot of times, it doesn’t start within ourselves at all. We gain so much from paying attention to the world around us and putting ourselves in position to learn from others. It is at this point when our abilities and self-perception drastically improve!

I work with a wheelchair sports and independence program here in Nashville. Kids in chairs participate in a variety of activities through the program in order to learn how to become more independent and, in the process, they get the opportunity to play sports that they may never before tried.

During a wheelchair basketball tournament this season, I was talking with one of the moms whose 12-year-old daughter is turning into quite an athlete. She’s only been on our team for a few years, but it’s clear that she has a future in the sport. Although I haven’t witnessed it, I’d heard that her independence skills outside of sports weren’t what they should be for someone so capable on a basketball court. Her mom told me that, for years, her daughter always said she didn’t think that she could ever move away from home. She lacked confidence in her abilities. Her parents tried to convince her otherwise, but it never sunk in; that is, until she started playing basketball.

The family lives in a small town, and there aren’t many other kids with disabilities around. Through basketball, however, she’s traveled to other states where she has met hundreds of other kids with disabilities. Recently, after seeing many older kids in the league be successful in basketball and go on to play in college, she told her mom that it was her goal to get a basketball scholarship. Her mom wanted to make sure that she knew that achieving her goal would mean having to move away, and she said that she knew and was willing to put in the effort to become more independent. Having friends with disabilities became a turning point in her life, and she’s now looking to the future!

It always brings me joy to see people believe in themselves for the first time. This girl always had the ability to achieve independence, but it wasn’t until she believed that she could that she was motivated to actually work towards it. At the same time, she didn’t believe in herself until she saw others, who were just like her, thriving in ways she'd only imagined.

There are certainly those who blaze their own path, and people with disabilities tend to be creative problem-solvers, but it’s rare that someone can achieve prolonged success throughout life without at least having some sort of a notion of how someone else achieved success in his or her own life. Able-bodied people have a relatively easy time finding someone else to model a path to success after because there are so many people around to look towards. They really don’t even have to think about it. People with disabilities, on the other hand, have a much more difficult time. Many people with disabilities don’t have dozens of other people with disabilities in their cities who are on a similar path and who are able to show them the way. That leaves it up to us emulating able-bodied people. I’m a firm believer that people with disabilities can do anything that able-bodied people can, but often the path that we have to take to the same end result is different, so we can’t always emulate our able-bodied peers without frustration. For example, we might know that waking up each day eager to make it to a fulfilling career on time is possible and something that we long for just like everyone else, but when we realize that work clothes are hard to get into and reliable accessible transportation is hard to come by, we’re not so sure what to do, and our goal of the fulfilling career suddenly seems far away. Having the advice of someone else with a disability who has been there becomes crucial.

I think that we all have a need to welcome people with disabilities into our lives because we learn how other people have been able to lessen that gap between those with and without disabilities. Being around people with disabilities teaches us that there are people out there just like us who have been through the same or greater challenges than us and have gone on to succeed at a high level. Learning that we can do something is just as important as learning how to do something. Some people fall into the trap of thinking that they’re alone in their disability and that they can’t do what everyone else around them does. Through being around others with disabilities, we learn that we don’t have to reinvent the wheel because other people have methods, tactics, and ideas that not only work for them, but they’ll probably work for us, too.

Even those who don’t feel isolated can learn a thing or two from others with disabilities. I grew up in Atlanta and now live in Nashville, and even though the majority of my friends were and are able-bodied, I honestly can’t remember a time when I didn’t know someone else with a disability. My level of independence and the ease with which I do certain things, getting dressed, for example, is definitely related to those friendships. From my experiences, I now have resources for questions even when my friends with disabilities aren’t close by. I have learned different things from the able-bodied people in my life than those with disabilities, and I’m still learning. I find it rewarding to be able to blend a solution that I’ve created to a problem with someone else’s way of doing things that might be just a little bit better. Nearly every time I spend time with someone with a disability, I pick up something to perfect a skill, and sometimes, I don’t even realize that I don’t know the easiest way to do something until I see another person with a disability do it. Other people with disabilities help teach us how to do things in ways that able-bodied people can’t because they haven’t been where we are.

So, how do you make the jump forward from not knowing many people with disabilities? Hopefully you all gain inspiration from the stories that you read on mobileWOMEN.org and have reached out to other readers through our "Community" section and active facebook page as well.

Taking these steps is an excellent start. Ultimately, I would argue that there’s nothing like meeting someone face to face. Seeing someone online is great, but that short article or video doesn’t give you the opportunity to see what their life as a whole is like, to see that their challenges are similar to yours, or to interact with them. It’s a limited view that makes us question whether they really are like us or whether it just seems that way. Meeting someone in person allows you to experience their life first-hand, to see their challenges, and to know that they really do overcome them. It’s an experience, and you get to have a say in what you want to learn.

As I said before, you may have to seek out people with disabilities if you don't know peers in your community. Maybe start by planning a trip to see a mobileWOMEN friend who you've gotten to know. In my life, I have found that athletes are great people from which to learn. Athletes are go-getters. Physically, they have built up enough strength to do all kinds of things, from the day-to-day living to pushing the limits of the body, but most of them started from little strength and worked their way up, and they know how to help you do that, too. It can be intimidating to jump into conversation with an athlete when you know that your skills are not yet developed, but athletics is a really supportive community that wants to help others. There are tennis, basketball, rugby, or other athletic groups or tournaments in most states.

I also learned a lot from the Ms. Wheelchair America Pageant, a pageant built on advocacy ability. The women there all had drastically different disabilities and were facing various obstacles based on where they lived, but I learned from each of them. Most states have state pageants that feed into Ms. Wheelchair America. Even if one of these kinds of events isn’t held in your hometown, I would strongly advise making a road trip.

No matter what your level of confidence today, we can all use a boost. Learning from others similar to us always helps and, thanks to technology, there are many ways to find your peers! Take a deep breath, embrace the idea of broadening your horizons, and get ready for new-and-improved you! Just like my 12-year-old friend experienced, you never know when a new endeavor might result in a surge of confidence to turn your whole life around.

mobileROMANCE: Advice for a Lonely Lesbian

2012-05-17T18:21:00.000-04:00

Tiffiny Carlson

Hello Tiff-

I’m a 34 year old woman with cerebral palsy and I use a power chair. My first and only relationship was in high school. Dating with a disability is hard enough, but throw in the fact that I am a lesbian and it gets so much harder. The stereotype is that people with disabilities are not sexual beings, but then you throw in a deviant sexuality...

I am not in to the bar or club scene, but I am wishing I had someone in my life.

Thanks,

Lonely Lesbian

----------------------------------------------------

Dear Lonely Lesbian,

Sorry to hear you’ve been single for so long. I hate hearing stories of people who’ve been single since high school. And putting a stop to the single streak, like you already recognized, when you’re both disabled and gay, isn’t the easiest hand to play, but it can still be played with success.

Since I’m a straight woman with not a lot of personal GBLT experience, I decided to ask a friend of mine, Sue, a T2-T3 paraplegic and gay woman what advice she had for you. Enjoy her wisdom!

Hi Lonely Lesbian,

There are lots of things I want to tell you. First of all, I found that coming out as a gay woman was very difficult. I didn't come out until I was 30. Before I took that step I was married to a great guy, but after five years of living a lie, I finally got divorced and began living a life true to myself. Accepting myself as a lesbian was a difficult journey of self-discovery and self-acceptance. Then at age 40 I found myself on another unexpected journey of self-acceptance: accepting myself as a disabled woman (T2- T3 paraplegic due to a spinal cord tumor). Today, however, I am proud to be who I am, and once I found my inner peace, everything in my life changed. I met a great woman and am now in a wonderful lesbian relationship of 9 years.

My advice: Remember, you are not “deviant.” Keep in mind that our President and Vice President want to see you happy and married to a woman (yahoo, President Obama).

Secondly, there may be a sterotype that people with disabilities are not sexual beings, but we are definitely breaking that stereotype! Girlfriend, please help by going out, meeting a woman and getting...... well you know. And as far as breaking the stereotype that disabled women are not sexual, check out the website http://therawbeautyproject.com/models.html. I was part of this photographic project which was critically acclaimed. "Uncensored Life: Raw Beauty" is an innovative visual arts project designed to inspire the public to create new perceptions, transform stereotypes and breakthrough personal obstacles by expanding awareness of women with physical challenges. The photograph project showed beautiful, successful, inspiring and sexual disabled women.

On the website you’ll see Marjorie, my (straight) friend with cerebral palsy who insisted on posing nude for her photo on the beach! She’s sexy and amazing!

Also check out Shelly Baer’s talk (at a national convention), that is posted here: http://www.youtube.com/watch?v=xX1Job6O60E. She speaks about living with a disability and being beautiful. Her word are inspiring. Shelly is a terrific (straight) friend and person!

Next, girlfriend, you have got to get out and hang out where the lesbians are. It doesn’t have to be in a bar. There are lots of gay organizations, ie. gay chambers of commerce--They have lunches.

You should try to get yourself to a “Gay Pride Parade." They occur in cities all over the country and the world. You will see lesbians in all shapes, sizes, abilities and disabilites.

Don't miss a yearly lesbian event in Miami called “Aquagirl,” where thouasnds of lesbians from all over the world desend upon Miami for four days of fun and sun.

Here are some links to organizations where you can see if they have anything going on in your city: http://www.glaad.org/, http://www.thetaskforce.org/, http://www.nclrights.org/site/PageServer.

In addition to attending events, I recommend reading gay magazines such as the "Advocate" or "Curve." Lots of lesbians I know go on Match.com. My friend in a wheelchair (okay, she’s straight) met a guy on the site. She posted, “Don’t let the wheelchair stop you, it never stopped me!”

In a nutshell, get out there! Everyone has stops in life; as disabled people, our stops are just more obvious. Be bold, be proud, and BE SEXUAL!

So there you have it. Great advice from a great gal. And don’t forget to work on being as approachable as possible too. Smile, flirt and when you see a girl you think is cute, chat her up. Being shy and in a wheelchair will get you nowhere.

Good luck!

Tiffiny

To submit your question to Tiffiny, email tiffiny@beautyability.com.

Ms. Wheelchair Massachusetts, Patti Panzarino: Creatively Persevering through Life

2012-04-23T21:42:00.003-04:00

Amy Saffell

by Amy Saffell

Greatness lies within us all, however sometimes we don’t recognize our potential without someone else’s help. This is the case with the newly-crowned Ms. Wheelchair Massachusetts, Patti Panzarino. What started out as an ordinary trip to get her wheelchair serviced turned into much more. A woman who worked at the shop mentioned the pageant to Patti, mentioning that she happened to be on the board of directors and thought that she would be a great contestant. Patti had never thought of herself as the “pageant type.” Particularly at the age of 53, she had her reservations about a pageant, but after learning that the contest focused on advocacy and accomplishment, she began to consider the idea a little more. With the encouragement of this woman and her husband, who she married in August of 2011, Patti was eventually convinced to compete.

Patti Panzarino

Although she was originally reluctant to participate, as Patti began to prepare and the days got closer, she became increasingly motivated and excited. Becoming a part of this pageant meant something to Patti, and she wanted to put her nerves aside. She was worried that her accomplishments thus far weren’t on par with the other contestants, nonetheless Patti stuck with the process.

It wasn’t until she began filling out the pageant application, and saw her accomplishments laid out before her, that Patti began to realize that she did have a long history of achievements. Patti was able to connect a lot of what she experienced as a child to philosophies that she now lives by as an adult. “As you look back on your answers you write down, you realize all that you’ve done,” Patti said. While that application may have been one of the most tedious parts of the process, it ended up giving Patti the deeper confidence that she needed to go into the pageant believing in herself.

A Lifetime of Preparation

Patti realized that all along, even in her childhood, she had known what it took to rise above her disability and to succeed. Growing up in the ‘60s with spinal muscular atrophy (SMA) before the Americans with Disabilities Act, Patti learned that one of the keys to having success as a person with a disability was to be creative. Her sister, who also had a disability, was her mentor, teaching her how to do things in ways that someone without a disability would never think about doing. Having someone with a disability help to navigate her through becoming independent was important to her, inspiring Patti to want to become a mentor to others.

Patti also discovered that perseverance had been instilled within her at a young age. She broke barriers at a time when many people with disabilities were stifled by society’s notion that they didn’t have dreams and goals like everyone else. Patti had a desire to fit into mainstream society. She joined the Girl Scouts long before girls with disabilities were common in local troops, and she found ways to earn the same badges that the other girls were earning. At school, she was always in a mainstream classroom. Despite occasional opposition, Patti graduated from high school and then enrolled at Hofstra University ,where she lived independently and majored in Interdisciplinary Studies. No matter what it took, she just never gave up.

Preparing for the pageant reminded Patti of the importance that music had in the development of her character. She grew up with music in the house at all times. Patti began piano lessons at age 6. These lessons served a variety of purposes, one of which was that playing the piano was a form of therapy to strengthen her hands, but it enabled her to do so with an activity that she shared with many of her classmates. Instead of therapy isolating her from her peers, it actually united her. In addition, piano also developed her sense of creativity. There were times where she couldn’t stretch her hand to reach the keys for specific songs, so her teacher would help her think of a new way to play them. It was during this process of learning to adapt that Patti developed good problem solving skills. Patti said that she learned to “assess situations anywhere. When you hit a wall, turn around and go the other direction,” which is a skill that she now uses each day in every aspect of her life. These days, Patti remains commited to music and is the lead singer, keyboardist, and songwriter for the band OLYPSYS.

Patti was a guest on WBSM radio station where she talked
about her pageant experience and her platform of Creative Perseverance

Her Crowning Moment

Despite her renewed sense of confidence, Patti did feel the pressure when it came down to the wire. On the day of the pageant, original doubts crept back into Patti’s mind, but they were mixed with anticipation. “I was a wreck, but it was great,” she recalled. Citing the importance of the day, Patti joked, “I woke up at 6:30, and I’m a musician, so I don’t normally get up that early.” She wanted to make sure that her hair, makeup, and outfit were perfect, not to mention having her talking points set in her mind. Her platform that day was, and will be for the rest of the year, “Creative Perseverance,” which Patti uses to describe her way of using creativity to overcome challenges.

The Ms. Wheelchair Massachusetts Pageant, sponsored by the Ms. Wheelchair Massachusetts Foundation, is not a beauty pageant. It’s an advocacy forum in the form of a competition consisting of personal and onstage interviews, a platform speech, and past accomplishments to select the most articulate spokesperson for advocacy around the state. One of Patti’s favorite aspects of the pageant was meeting the other women competing. They all come from different backgrounds, and although they were competing, they were really all advocating for the same cause. The contestants also got to meet people from a variety of organizations, from wheelchair companies to adaptive yoga instructors, to provide them with helpful information for wherever life takes them next.

Patti felt positive about how all aspects of the day went for her, but she was stunned to hear her name called as the winner. In fact, a couple months later, it’s all still sinking in: “I feel like my alarm is going to go off, and it will all be a dream!”

Patti works with the members of Partners For Youth With Disabilities

Using Her Voice

Patti is proud to wear a crown that serves as much more than a sparkly accessory. “I have a voice now,” she said. “The crown gives you a voice to make a difference in society.” While Patti has been using her voice for advocacy for years, now it is on a much bigger scale.

Even though her reign has just begun, she already has a full schedule. Because Patti has a passion for music, one of the first appearances that she wanted to make was at a songwriting session at the Parters for Youth with Disabilities meeting. Patti helped the group write a song solely from their own lyrics. What was once thought of as disability became ability in their songwriting session. Knowing that music should be experienced by everyone, one of Patti’s goals this year is to advocate for more accessibility in the entertainment industry for both spectators and performers.

Patti will soon be appearing on Ablevision, a television and media program produced entirely by people with disabilities; at the Massachusetts Hospital School graduation; the SMA Walk & Roll; the Equal Opportunities Career Day; and that’s just in May! As for experiences that she hopes to have this year, the top of that list centers around music. She submitted an audition CD to sing the National Anthem for the Boston Red Sox at Fenway Park for the Disability Awareness Day this summer. Ultimately, though, Patti hopes to help promote more overall opportunities for people with disabilities. She said that she has seen many people get frustrated at the lack of opportunities for people with disabilities, and she wants that to change both by advocating for change in overall society and by encouraging others with disabilities to keep living life to the fullest. “People give up. Don’t give up. I’m still going. Life’s not over,” said Patti.

Later this summer, Patti will advance on to the Ms. Wheelchair America Pageant. She is excited to meet other women with disabilities from across the country, and she has her eyes set on the crown. “I really want to win the title,” she said with confidence. “It’s a second chance to show my abilities to an even wider audience.” Patti knows that she has a lot to do in preparation for the big stage of Ms. Wheelchair America. In addition to building her experiences, she’ll also have to raise money for the entry fee and travel.

With the grace with which Patti carries herself, her positive attitude and determination when it comes to reaching her goals, those around Patti often refer to her as an inspiration. Patti is quick to say that she is simply just living life the best way she knows how. There are times, however, when those compliments come in handy, as Patti admits, “No matter how well adjusted you are, there are those days when having a disability gets you down. But you can’t stay down. I store those compliments up for a rainy day and keep on going,” she said.

With the way that the last few months have gone for Patti, it’s safe to say that those rainy days will be few and far between and that she’ll have plenty of inspiration to get through them.

To follow Patti’s progress or to learn more about the Ms. Wheelchair Massachusetts Pageant, visit www.mswheelchairmass.org. To check out Patti’s band OLYPSYS, visit www.facebook.com/olypsys and www.reverbnation.com/olypsys.

Let's Rock & Roll!

2012-04-21T23:26:00.001-04:00

by Bethany A. Hoppe

News Flash: We have skipped Spring. None of us are swimsuit ready! I have bought Zumba for my Wii and a DVD of Intro to Yoga for Toning and Shaping.

Clearly I've been thinking about body image. What we think about our bodies, what we think about other people's bodies, and what maybe-kinda-perhaps other people are thinking of our bodies can be overwhelming.

That's an awful lot of people thinking an awful lot about bodies.

I don't know about you, but when I think about my body I find sometimes we're friends. Sometimes we're enemies. And sometimes we're frenemies. It depends on the day, the occasion, the weather, the moon phase, the tide, the year, the age, the color of the sky, the traffic, the atmosphere, the mood, pre-or-post coffee, the season, and most particularly what major event is coming up.

To name a few factors.

Women have more body issues than men. Men, however, are catching up with women when it comes to dealing with body issues. The more media displays the ideal male - aggressive, muscular, traditional-typed masculine traits - the more men are beginning to believe that this is the way they should be in order to be desirable.

Women have dealt with this since God gave birth.

Women are much more wiling to alter themselves, at whatever the cost, to fit what they have been told is the ideal woman. Eating disorders teach us that women will starve their bodies, damage their growth process, hinder their childbearing years, and even die to look thin. The billion dollar diet industry succeeds in selling us pills, lotions, potions, drinks, powders, and lists of off-limit foods that will cause base-line chemical imbalances to our system, and cause damage our livers, kidneys, and digestive tracts, just to look thin.

Powerful advertising frequently tells us this girl is popular, this girl gets sex on a regular basis, this girl is successful, this girl gets drinks bought for her, this girl gets the job offers, or this girl is trustworthy. We take that information and ask ourselves where we fit in on that impressive spectrum, and frequently find we're not this girl. But we often want to be.

Soon, we learn, pretty passively and without too much effort on our part, that we can be just like her if we buy what she has.

I often wonder where women with disabilities fit into this. If nine out of ten women can immediately point to a physical flaw they wish they could make go away, then what do we women with disabilities point to? If women walking among us are unhappy with their healthy thighs, how do women feel about their thighs that aren't as muscular or mobile?

In the many conversations that I have had with both standing and seated women, I have found that more often than not, we even the score for one trait or another. I can envy another woman's height while she is envying my...uh....endowment fund. Basically, whenever you get a group of women together, disabled or not, we will end up sitting around offering to trade each other what we think the other has more or less of: I'll trade you my calves for your butt!

I have struggled with body issues in the past, as I tried to logically place myself in a taller, standing world. The first step for me was just physical acceptance. Being born with Spina Bifida means that my current physique is all I've ever known; I didn't have the life-altering experience a spinal cord injury might impress on someone. Therefore logic tells me that since my disability has always been there, it should be settled in my mind that it is what it is. Regardless, it still felt like there was a lot to grapple with growing up, such as confusion and anger over physicality and body image.

I am very happy with myself, and I am extremely comfortable in my own skin. Just like anyone else, that was a process. And just like anyone else, I know there are all sort of ways that I can help or hinder what I have. Eating well and exercise (on whatever level possible) makes a huge difference in our positive self-perception, which is also rated "E" for Everyone.

Feminist studies research tells us that for women with disabilities to be visible, to compete for mates, relationships, jobs, or media portrayal and basic representation, they must do a hundred times more than their non-disabled peers to even begin to be in the player's circle. It's known, academically, as double-oppression. Obviously it should not be this way, but unfortunately it frequently is.

Sometimes it seems that women in general, and more specifically women with disabilities, often have to rock-star it out and always be dialed to "ON," by making sure we're well dressed, our hair is in place, and our makeup is on. During a time where many women are taking a stand against feminine stereotypes, media portrayals still dictate to all of us how we should look, be shaped, and behave. In terms of women with disabilities, it is almost as if mainstream society requires us to be loud enough and relevant enough to bring them up and over the hurdle of disability and difference, by looking beyond exceptional by working what we've got. Yet, from our own personal perspectives, we've already been there done that, and certainly see no need to constantly work it just to maintain status quo.

From our standpoint, we're fine. We've got our lives and goals totally under control. But because we're often not seen, heard, or represented in the media frequently enough to be simply considered part of the tapestry, we find ourselves filling the constant role of being educators who jump on each teachable-moment that we can. Quite honestly, we frequently really just want to zip into the grocery store on our way home to buy chips and salsa, not take the time to always "represent."

When we are out and about, whether we like it or not, we experience our own mini-version of a body scan. The assessment is quick and calculating. Simply put, we get stared at. And those staring moments are teachable moments, especially if for some odd and tired reason, we are one of the only people with a visible disability someone has seen or interacted with. At first it's easy to think that it's impossible to be the first person with a disability that others may have encountered. If I earned a dollar every time a cashier, student, taxi driver, or waiter has mentioned to me that I am the first person they've ever met/helped/waited on that had a disability...my credit cards would be paid off. Take it as sad, or take it as a bit of a giggle-ha-ha...it is true.

My sister Becky once said to me, "People are going to stare at you. You're different than they are. Make damn sure you're giving them something really good to look at." That stuck with me. I was sitting on the side of her bed watching her put on her makeup, getting ready to out with her friends. I couldn't wait to start playing and splashing around in makeup as it was...and her advice, which I truly absorbed, only made me want to scour her clothes closet and makeup drawer all the more.

It isn't a matter of "makeup and clothes makes the person." We know that the spirit and internal self is what makes the person. But I have self-experimented with my sister's advice. Coming from a place of confidence, I have gone out on errands without much thought to my general appearance, and noted dramatic differences in general reactions to me. More small children verbally asked their parent what was wrong with that woman while pointing from a distance, I got a lot more down-played verb-cap (sugar, honey, sweetie, hon), and males averted their gaze quickly. Now, granted, I didn't look like an ogre...I just was a few clothing options shy of fun pajama bottoms, a ripped up sweatshirt, zero makeup, and a granny bun hairdo. Please keep in mind I come from a fabulous line of women who never left the house without lipstick...this was not easy for me to do.

Coming from the same place of confidence I have gone out on errands where I'd dressed with intention, did minimal makeup on purpose, and did something my hair - as 1950's and archaic as that sounds. (And yes-I-had-to-had-to-had-to-wear-lipstick).

Keeping in mind that I internally felt the same about myself so that there wasn't any emotive projection going on, I found small children waved at me shyly and asked me directly what was wrong. Some approached and wanted to move the tires, which I let them do with guidance. I've had random children actually clamored onto my lap after they start talking with me - their mothers were horrified at first, but I let them know that its perfectly fine. Maybe my standard answer of, "I use my wheels like you use your legs...only a bit faster...like a race car!" is too inviting for the tiny tots. So, I make race car sounds as I wheel them the two or three feet back to their moms, who are by now smiling, relieved I'm not offended or that I'm not a four-wheel drive child abductor.

I also found that the sugar-honey-sweetie terms morphed into mostly ma'am. Then again...I do live in the South, so granted there will always be some sugar, honey, and maybe even a baby girl nomenclatures tossed in there...albeit with a totally different tonality. Honestly, I'd be worried and offended if I got through a day without hearing some of my favorite Southern sounds, actually.

In terms of men, males stared, only they didn't avert their eyes quickly. Instead, they smiled and meandered on their way through the produce aisle. From time to time I like to think that I just got checked out....yeah...still rockin' and rollin' in her fabulous forties!

Either way...I still got stared at...only differently, which held some great importance and value to me, and it may be the same for you. In fact, I would gamble on the fact that all of us put value and importance on getting positive feedback, kind looks, and sociable words when we're out in public. And that has nothing to do with disability. It does however, have everything to do with humanity.

I'm not advocating that women with disabilities have to look their utmost best when they go out. In fact, I think that women - regardless of disability - should not have to play the visual games we find ourselves playing. But moreover, women with disabilities should not have to play those games harder than your average woman.

They should just be able to be.

My Gender Communications class studied media, gendering, and body types this week. I specifically asked them whether or not they found themselves truly represented in the ads and shows that they watched. Not a lot of them had. They identified with personalities or characters...but they didn't feel like they saw themselves actually represented. I agreed with them and said I hadn't either, until now. Then I played the teaser for the upcoming reality show Push Girls and asked what their opinion or personal knowledge of people with disabilities - outside of myself as their professor - and specifically women with disabilities was, after they watched the clip.

Their reactions were interesting. They all agreed it was about time a show featured people with disabilities - so kudos to my students for recognizing that, and being impressed that such a show was coming to television. They were for it, which I was happy about. I am encouraging them to watch it this summer, and thus far their feedback has indicated they are interested in watching more. We all are! Because just like my students feeling like they don't see themselves represented in media, neither do I. Push Girls will be the first time I will ever see real women with disabilities, who are active, who are strong females, representing women who happen to have a disability, who are also fashion conscious, on television which has literally hundreds of channels. It will be the first time I will be able to see me in the media. It will be the first time women with disabilities will see themselves collectively, in the media.

Interesting enough though, one of my female students made a strong point when she said, "I think it's awesome...but it is doing what all other media does...I mean these girls are hot! They all look like models, and unfortunately, I think they have to be in order to start to make change in people's perceptions of women with disabilities. I don't know how realistic it is...but I almost think it has to be that way to get the attention of television viewers."

I agree....to a point. If the fact that the ladies of Push Girls are indeed hot, and do in fact rock star their lives...does that somehow translate to the idea that the social perception of women with disabilities is normally frumpy? Is that what media has taught us? If so, then that means women with disabilities are in the same tank as their able-bodied peers: They're held to a norm that sets the bar at an either-or scale: Appealing or homely. Sexual or frigid. Intelligent or dumb. Powerful or weak. When in reality, none of us are any of those extremes, but are instead each in a different place on a spectrum scale.

I once pulled into an accessible parking spot, and before I could pop my placard up on the rearview, a woman was rapping on the passenger window. I rolled it down enough to hear her rant at me, "Hey! You can't park here! This is for the handicapped!"

I smiled, held up my tag and said, "I am. Just hanging up my tag..."

Her eyes popped open and then narrowed. And then she har-humphed and stated, "Well. You don't look handicapped!"

Wow. Okay. Whatever.

Body image is important to a lot of people. I like to bring it every day. I like to inspire others to bring it every day. Not because I have a disability, but because grabbing life by the horns and living with intention is just so vital for all of us. I think that Push Girls is a step in the right direction, and that it will bring more attention to all of us who live our lives in ways that celebrate life.

This approach to my life is my center. It is who I am. I am glad that I will see myself reflected in television. I am glad that you'll see yourself reflected in television.

A woman...who happens to have a disability.

A woman who takes that disability and makes it rock....and roll!

Check out author & speaker Bethany A. Hoppe's website Raspberry Vogue, www.raspberryvogue.com, the Lifestyle Blog of a Rolling Diva!

mobileROMANCE: Always in the friend category

2012-04-02T21:52:00.001-04:00

mobileROMANCE columnist
Tiffiny Carlson

Hi Tiffiny,

I’m a 29 year old guy in a wheelchair, very independent and somewhat successful. I’d say I’m a good looking guy and think I come across relatively confident and talking to girls has never been a problem. I realized early after my accident that life was going to be significantly different when it came to women and relationships (I know, not rocket science…haha). It was not going to be nearly as easy as it once was, but I’ve been pretty determined to not let my chair be my excuse.

After trying and failing to pick up girls in a similar way to how I once had, I decided that a better way to approach it might be to rather befriend them rather than actively perusing them. Only problem is I now have a bunch of girl “friends” and no girlfriend, and it’s beginning to feel not too dissimilar from the relationships girls have with their gay guy friends! If I try to make a move and the feelings aren’t mutual, the friendship will never be the same.

My question is, what--if anything--would you do differently?

Sincerely,

Mr. Always Platonic

__________________________________________________________

Dear Mr. Always Platonic,

Sorry to hear your post-injury dating method isn’t working out! Whether you’re a woman or a guy with a disability, I think a lot of us can relate to your situation. It’s not easy trying to persuade the world we’re still a great catch despite our disability and I know a lot of us have tried your exact method. You’d think it’d work….it sounds like a great technique, “Become their friend first, then see where it goes,” even dating experts recommend trying this approach, but as your situation proves, sometimes being friends-first can backfire.

Here’s the deal: Becoming too close of friends with those of the opposite sex can asexualize you in the eyes of AB-friends (i.e. possible love interests) who may never known a person with a disability until you. If that happens, it can really throw a wrench in your plans. Once they put you in the friend/guy-but-not-sexual category, it’s really hard to backtrack. Are you talking to your female friends about your sex life and dating woes to at least clue them in that you’re still interested in sex and dating? If not, you should be.

Girls are transparent creatures. Unless you’re dealing with a very shy woman or an amazing actress, if any of your female friends like you, you would probably know by now. So if any of them haven’t flirted with you yet, assume the worst - they’re probably not interested (romantically). You just need to step-back and stop pursuing anyone in that group (hope you haven‘t fallen for any of them yet) and reconfigure your approach (again. I know!). But I promise you I’ll set you on the right track.

Instead, you’re going to need to a better “friendly” approach. You were right to a certain degree. Being a friend is more effective when trying to pick up women rather than the in-your-face “you’re hot” approach. Unfortunately, you took it too far into the “best friend” territory, killing your chances. Next time you meet a woman you‘re interested in, continue the friendly approach and don’t be annoyingly flirty, but remember to keep some mystery once you become friends and never allow yourself get too close (her female best-friends are for that!).

As a woman, we’re told a little mystery always helps in attracting men. This is more true than any of us realize - and it applies to the guys too! I know it’s not easy withholding a possible friendship from blooming, hoping something deeper may develop in its place, but if you’re serious about finding a woman who’s really into you and looks at you as she would any other man (100 all-male oh yeah!) then you’ll have to try your darndest to prevent the friendship from becoming too close. Be there, but don’t be there for all the crises if you know what I mean.

Love will come. Be patient, and good luck!

Tiffiny

To submit your question to Tiffiny, email tiffiny@beautyability.com.

Hello...World!

2012-03-26T23:58:00.005-04:00

by Jenny Addis

Hey Jen!

Someone close to me has a very similar story to yours, but unlike you, she is giving up. It's been only three years since the car accident that caused her paralysis. I have seen your inspiring website and posts on Facebook and it’s obvious you are living life to the fullest. My friend has a child and so much to live for; I just want to help! How long did it take you to decide to rejoin the world?

~ Anonymous MW Reader

Hey Anonymous MW Reader!

I'd like to say I have a straightforward answer to your question, but I don't. I'll explain...

First, the feelings your loved one is experiencing are only natural. When an individual goes through such a life-altering, traumatic experience, especially being blindsided by it, there is no knowing how that person will react. Everyone deals differently with pain, grief, and loss. Some people are headstrong and determined from the start, while others melt, breakdown and give up. Is there a right or a wrong way to deal with it? In my opinion, no! What matters is how we overcome the stumbling block and what path we then choose.

I remember being in the hospital, for only days, wondering how I was going to face the world, everything and everyone I had ever known in this new and abnormal state; in a wheelchair, as a quadriplegic. The fear was unimaginable and seemed literally unfeasible.

I was only 24 years old when paralysis struck me. My world was turned upside down. I had a great career that I enjoyed immensely. I had amazing friendships and a great family life. Growing up, I wasn't your typical girl, though. I loved styling hair, applying make-up, manicures, dancing, getting all dressed up for a girls night out, but I also loved my red pick-up truck, jet ski, hanging out with my four brothers and getting dirty. At the end of the day, I was loving and living life to the fullest! I went from being a completely independent woman to a woman completely dependent on everyone around me for everything I needed in life.

The night of my car accident, I had thrown a bachelorette party for my future sister-in-law and was enjoying my role as her maid of honor. About three weeks into my hospital stay was the big day. It was touch and go, but the doctor's had approved it and let me attend the wedding. This was my first encounter with the real world without a doctor, nurse or therapist by my side and, honestly, it was one of the hardest days of my life. If I could have, I would've passed on it altogether, but I had to stay true to my promise and commitment, even under the circumstances and regardless of my inner fears.

The real question is...would I have faced the world, so early on, regardless of my promise? I don't know. I do know, however, that without my loved ones, I wouldn’t have gotten through that night.

This same support system has been there for me from day one. It’s their encouragement to my inner spirit that showed me I can live this new life! I'll be honest, though, no matter how much strength and positivity I put forth, it hasn't been the easiest path.

For example, from the beginning, I always had intentions to go back to my career as soon as possible. Unfortunately, I wasn't welcomed back the way I had been originally promised and lost my position. Basically, higher management decided they would take me back, but it was at a different location, in a basement answering telephones, which would alienate me from our customers, visually--nothing even close to the job I was performing for the last six years. When I found out that my livelihood was being taken away from me, I was heartbroken and devastated! I was always career-oriented and loved my job, but most of all, my independence, so losing my job for wrongful reasons was a hard pill to swallow.

As I had mentioned, this journey hasn't been easy. There have been countless instances along the way where I attempted to take a step forward yet was pushed back three. Does it make me tired? Yes! Do I ever feel like giving up? Of course I do. I think we all do, especially when faced with adversity. I want to express to every able-bodied MW reader who may have a loved one facing adversity, especially to this degree: don't give up on them! Your support can help assure them that they're not fighting this fight alone. Please empathize with their situation and don't judge, whether you agree or disagree with how they may be dealing with their adversity.

To every disabled MW reader, please don't give up on yourself. Believe it or not, when faced with this type of adversity, you have a power that no one else has. You have the power to change other's lives, in a positive way. Your strength can give others, disabled and able-bodied, strength. Your optimism can give others hope and a glimpse into a positive and a better tomorrow. I wouldn’t trade these powers for anything!

To this day, it takes a conscience effort to wake up and get out of bed; to live, move forward, all with a good and positive attitude. Ironically, my life today is more fulfilled than ever. I have six nieces and nephews who give me six huge reasons to keep on living and inspire me to be a better person and a positive “roll” model. I want them to be proud of me. I have a very rewarding and amazing career that allows me to change other's lives. Plus, I have met incredible life-changing individuals along the way. I have wasted years of my life terrified at the thought of the world, whether they'd accept or were accepting of me in this condition or not. Today, I embrace it! My attitude is "Hello...World! The wheelchair and my disability equals the new "Me"! Take Me or leave Me, because I'm moving on with or without you!”

"There is no way to run from a hardship. It is what it is…nothing more. Either choose to live life being angry and pessimistic with a hardship or choose a life of happiness and optimism with that hardship. You cannot go back and change your struggles and hardships." ~ Jenny Addis

To read Jenny's previous entry, "Age Appropriate...Or Not!" Go to: http://www.mobilewomen.org/2011/04/hey-jen-age-appropriateor-not.html#more. To find more "Hey Jen!" columns, visitwww.mobileWOMEN.org/heyjen. Remember, nothing is too personal in my book, so send your questions to “Hey Jen!” at: mobileHeyJen@gmail.com! Learn more about Jenny at www.InspirationSpeaks.Me.

March is Women’s History Month! Let’s Get Rolling!

2012-03-09T21:52:00.000-05:00

by Bethany A. Hoppe: Raspberry Vogue

March is National Women’s History month, which dates back to the first International Women’s Day in 1911. Much like “traditional history,” where women have been left out of the majority of our pivotal moments in history, women with disabilities have been left out of our collective oral and written histories, too.

Studying women with disabilities in relationship to the feminist movements has become a rather new adventure for me. I know that I was born at a critical time on many levels. In 1970, The Disability Rights Act, which began its movement in the mid-1960’s, was written into law.

Also, on a personal note, the year I was born, surgeons at Buffalo Children’s Hospital, New York, took brave and drastic measures to set the course for my life, having been born premature with Spina Bifida. Family legend has it that the surgeons argued over my body on the table. Thankfully, the innovative, aggressive physician won, and in an unprecedented move, he surgically broke my back and reset it, thereby eliminating a lifetime of pressure, pain, and the need for a shunt.

I believe I was born in an excellent year.

During the first wave of feminism, women wanted the right to vote. And while we look at those pioneering women admiringly today, at the time they were balefully unpopular – even in the minds of other women. The small group of educated women and laborers in America worked to achieve the vote, which was awarded them in August of 1920 in the state of Tennessee. From the beginning, the suffragists movement was headed by bourgeois women – privileged women who had at their disposal the luxury of time, resources, literacy, and finances. The working class or labor force women felt left out and were often bound to a double day; their fulltime factory job in the daytime, and their domestic family work in the evenings. The women who needed rights the most were frequently the very women who were working in the homes of the elite, washing their clothes, cleaning their houses, and raising their children before returning home to do the same for themselves.

After women achieved the vote, not all women had access or permission to exercise their rights. It would take years before all women--of all classes and all races-would be, as citizens, equal. At the time, race and class were the primary difference. Women with disabilites were not part of the equation.

Decades passed before the second wave of feminism developed in the 1960’s. These reformations dealt with women’s equality in the work place, and it fought the all-powerful cult of domesticity. Again, even the women were split among themselves regarding the goals of women’s rights. Some felt that feminism took away a woman’s femininity, as well as men’s masculinity – while the feminists worked towards removing the systems of oppression that kept women in their current status, without choices. So two parallel female forces went to work – one to preserve the way things were, and one to change how we approached marriage, contraception, childbirth, work, and wages. This time around, black feminists rose and ensured their own representation and voices were heard. The class division, though in the turbulence of the racist 60’s, was more balanced than during the first wave where black female rights were not part of the conversation. Finally, black women were speaking out against racial, class, labor, and economic issues that faced specifically black women in their unique experiences, which were far different than those of middle to upper class white women. Again, women with disabilities were not part of the equation – even though at the time, through coalitions with non-disabled established entities, people with disabilities were beginning to address hospital conditions, treatment options, access, and safety. The concept of women with disabilities was not yet a singular subject.

Now, here we are in the midst of the third wave of feminism. And it is a totally different ballgame. Feminism is no longer looked at as middle-to-upper class white feminism, with a separate entity of black feminism as a blanket statement. Instead, feminism is viewed from a global perspective, encompassing everyone. A collective, collaborative approach hinges itself on coalitions that address issues faced by all women, regardless of class, race, nationality, sexual orientation, or economic status. Women with disabilities are now participating.

What is unique about the disabled woman’s perspective is that women with disabilities cover all categories within women’s issues. Disability is not limited to race. It is not picky about sexual orientation. It does not decipher class. And it occurs around the world. It is something that can become part of anyone’s experience in a split second. It exists.

It is visible and tangible. As a force, it is one of the most non-discriminatory factors we have next to being human. Disability is pervasive, and it reflects the current gender statistics that indicate there are more females than males in the world, meaning there are more women with disabilities than there are men with disabilities. This means there are more women with disabilities that need access to proper healthcare that not only addresses women’s specific needs, but also meet specific disability needs.

Current statistics show that disabled men are healthier than disabled women, they suffer fewer infections, have fewer hospital visits and stays, and resume normal life quicker post-injury. They hold more jobs, though they are not paid more than their non-disabled male peers. They are more often married, and experience far less divorce post-injury. They live more independently in safer neighborhoods, they take care of themselves better, and they live longer. And they are less discriminiated against, and experience far less violence. They are more prone to become active in sports both with congenital disabilities and disability due to injury.

It seems that by the numbers, the disabled population reflects the non-disabled population.

Yet there is more. Women with disabilities often face what is commonly called Double Oppression. First, according to feminism, they are oppressed because they are women. Secondly, they are oppressed because they are disabled. What the theory of double oppression does for women with disabilities is make the percentage of violence against women in this category soar, while making the percentage of women in this category who are married/in a relationship and employed plummet.

What can we do about it? Everything!

We - women with disabilities - can do exactly what non-disabled women within the third wave of feminism are doing: Utilize the power of the Internet and easy access to the media to our advantage.

In 1911, women communicated through letters, speeches, meetings, and conventions. They traveled by train. Everything took an excruciatingly long time, particularly compared to today.

Today, with global Internet capabilities, web sites, digital conferencing, social networking, blogs such as this, YouTube, film making, documentaries….messages and images are able to be distributed across the globe in the matter of seconds. Access to support systems that cross class, economic, and language barriers are instantly possible.

I want to ask each of you that reads this to do something: This Women’s History Month March 2012…I am asking women with disabilities to post, upload, speak, perform, write, and reach a global audience and make yourselves visible. If every women with a disability chose just one of the following options: write to a blog, contribute or generate a chat-room or discussion board, upload a speech, video tape your dance, your monologue, your vocal performance, write to your congressional representative, volunteer at a children’s hospital or rehab center, register to vote, register to become a member of a women’s organization near you….the shift of our presence would be noticeable.

If we agree that women with disabilities should not be a statistic, then let’s each do something to combat at least one aspect of those statistics in any way possible. If we agree that women with disabilities are not visible in the media, then let’s each do one thing, however small or personalized, to combat at least one aspect of being invisible in American media. If we agree that women with disabilities deserve not only top healthcare as a women, but top healthcare that is specialized, then let’s each write to our representative on behalf of one another.

Pick any one of these important aspects of being a woman with a disability, and start the ball rolling towards visible equality and representation by women with disabilities this Women’s History Month, March 2012.

Bethany A. Hoppe is a speaker and author who works to promote women with disabilities in mainstream media, who has a disability herself...Spina Bifida. She holds a Masters in communication studies and teaches at Middle Tennessee State University. Bethany writes Raspberry Vogue, a lifestyle blog of a wheelchair diva (www.RaspberryVogue.com).

MobileROMANCE: Looking to get her feet wet

2012-02-10T21:22:00.003-05:00

mobileROMANCE columnist
Tiffiny Carlson

Dear Tiff,

I have type 2 Spinal Muscular Atrophy, but I also have a trach and a G-tube, so it's not just the wheelchair with me. I just graduated, just moved into my first apartment, and never had a boyfriend in high school (for my own personal reasons). But now that I'm on my own and going to college soon, I'm totally ready to enter the dating scene. So, as a young disabled women with zero dating experience, what kinds of advice would you give me in regards to basic dating rules, how I should carry myself, what to do with the sex subject...pretty much basic advice on how to become a "hot chick in a wheelchair" too, and not "Just that disabled girl."

Thanks so much!

Dear A,

Congratulations on being ready to put yourself out there! I too waited until after high school to begin dating. You’re actually at an advantage in many ways. You’re choosing to start on your own terms and not barreling into it haphazardly. And even better, the internet is at your beck and call, for both advice AND men. You almost can’t lose.

There are a handful of important things a woman with a disability in your position should possess before making her debut in the dating world. Carrying oneself with poise and flair is something all girls want to achieve, and you can achieve this too despite your disability. The first thing you need to do is arm yourself with a wardrobe of stylish, figure-flattering outfits. You don’t have to spend hundreds. I have put together dozens of cool outfits from thrift store finds. Figure out your best physical feature and highlight it as much as possible whenever you dress. This is a must when you use a wheelchair since sitting down can hide so much. Guys are visual creatures. You must tap into that when you’re out there trying to meet men.

And make sure you have some stylish yet sexy accessories to add to your look. A cool hat, some pretty scarves, a belt that highlights your waist, printed tights and at least one pair of sexy heels. Accessories, whatever they are, are a great way to show the world you still have style and it shows the men you meet you may be disabled, but you’re also a hip chic they should get to know. Guys love interesting women. And don’t forget, hair and makeup matter too. Not a lot of makeup - concealer, light eyeliner, bronzer and a natural pink lip work great for most girls (guys hate too much makeup). When you’re serious about meeting a guy, girly checkmarks still stand for something.

Even more important than how you look, is how you carry yourself. Being a “hot chick in a wheelchair” takes a lot of confidence. When you leave your house, you need to carry yourself with poise. Hold your head high, roll down the street not afraid to look people in the eyes, cross your legs to look extra feminine, smile easily, be in tune with your funny bone and remember, life is short and that men love a girl who’s easy-going and easy to approach.

If you decide to go the internet dating route, remember my two golden rules: 1) Always put your disability in the intro paragraph of your dating profile. Never keep your disability a secret at any time. Be upfront about your disability and you will attract the right men. And 2) Add to your dating profile that yes, “I can still have sex.” Make it funny if you must, but put it in there somewhere. It may seem ridiculous that you even have to add that to your profile, but almost every guy who’s going to visit your profile will think this. It’s best to satiate their curiosity right away without them having to ask the big sex question when you first begin chatting, making both of you feel awkward.

And when you’re meeting men, remember to keep your creeper-detector turned up to maximum. There are a loads of creeps out there who will prey on you because of your disability. Most are of these guys are only interested in one thing, so make sure you date smart and stay one step ahead of the game. Remember, you’re worthy of a great, sexy and successful guy just like any other woman out there. Never settle.

So there you have it. Show off your curves as stylishly as possible, find your poise and always be open about your disability when meeting men, making sure they respect you in the process. Good luck and girl, have fun!

Tiffiny

To submit your question to Tiffiny, email tiffiny@beautyability.com.

Introducing Tiffiny Carlson, our mobileROMANCE Columnist!

2012-02-01T23:15:00.000-05:00

mobileWOMEN is proud to announce the addition of Tiffiny Carlson to our columnist team! Tiffiny will be our mobileROMANCE columnist, answering your questions about love, dating, romance, and relationships for the mobileWOMAN.

Tiffiny Carlson, a C6 quadriplegic, has written extensively on relationships and disabilities. She has been published in Penthouse, Playgirl, Marie Claire and wrote a disability love column several years for Lovebyrd.com. She's dated extensively since her injury and although she's now settled down, she's excited to bring her wisdom to help people with disabilities who are struggling to find love. In addition, Tiffiny is the founder of the disability blog BeautyAbility.com and hosts the disability lifestyle podcast "No Free Rides."

To submit your question to Tiffiny, email tiffiny@beautyability.com.

Resolve to Live Vibrantly in 2012

2011-12-31T01:11:00.003-05:00

by Amy Saffell

2011 has come to a close, and we’re ushering in a new year. For many, the end of holiday celebrations signals a time for reflection. Most of us realize we still have room to grow into who we want to be, and that means it’s time to make some new year’s resolutions. We make resolutions because we realize that, no matter how great the previous year has been, the new year can be even better. If you’re on the fence about new year’s resolutions, let’s look at how you might make (and keep!) one!

What do You Resolve to Do…?

If we’re really honest with ourselves, we all have some area in our life that we know isn’t what it could be, yet we’d like to reach our potential. The new year is typically a good time to address these issues. A few general themes seem to be present in many people’s resolutions, and those items usually involves things we’ve delayed throughout the year.

Of course, there are the ever-popular health related resolutions. The holidays generally mean eating a lot of unhealthy food, so weight loss through proper food consumption and exercise are great resolutions. If you’ve never visited your local YMCA or recreation center, give it a shot. I’ve found both places to be really helpful in my own exercise routine. As much as we may hate to admit it, having a disability comes with its own set of health concerns, so maybe 2012 is the year that you finally get some of those issues under control.

Another popular topic of new year’s resolutions relates to finances. Getting rid of debt and having savings are important steps to financial freedom. There are lots of online resources to help you manage your finances, as well as those friends and family members who can offer their advice.

With the popularity of health and money-related resolutions, many people don’t realize that new year’s resolutions don’t have to fit into either of those categories. Resolutions that lead to an improved life, no matter what form that takes, are the best kind. We all deserve to have a happy, meaningful life. Think of a way in which your life might be lacking the richness that you imagine it could have, and make a resolution to improve in that area.

As women with disabilities, we have a unique opportunity to teach others in our community that having a disability doesn’t need to hold us back from leading a full life. If others haven’t been seeing that from your own life, 2012 might be a great time to make some changes towards getting involved in your community. I love to volunteer my time around town, but even making regular trips to the grocery store is a way that I can represent the capabilities of people with disabilities.

Some additional life-improvement resolutions that you might want to consider are: having a more positive attitude and outlook, picking up a new hobby, stopping procrastination, becoming more independent, keeping in better contact with old friends and family, or joining a group in the community.

…And How do You Resolve to do It?

Once you think of a resolution, it’s time to spring into action. Some people are scared off from making resolutions because they fear that they’ll never stick to them. Resolutions take work, and big changes don’t happen overnight. Be realistic about your goals. It’s important to take one day at a time and to start small. No matter how small, do one thing every day (or week) that supports your resolution. If your resolution is to be healthier and you’re starting from scratch, cut out one unhealthy food from your diet every week or take one trip to the gym a week at first, and then add on more as you progress. If your resolution is to have a more positive attitude, start by thinking about what you say to yourself, and change a negative thought when you can.

Perhaps one of the most important components to helping you stick to your resolution is to tell someone else about it. You may think it’s embarrassing, but speaking from experience, people love sharing in someone else’s triumph. Maybe someone will join you on your journey so that you can support one another, but even if they don’t have the same resolution, simply telling someone about your goal gives you the accountability and encouragement that you need. I work out at the YMCA or recreation center a few times a week and typically see the same people. If I skip going a few times, people will ask me where I’ve been. Even though they may just be acquaintances, I don’t want to have to tell them that I’ve been lazy, so they help me stay with my routine. If you know that someone will be asking you how your resolution is going, you won’t want to disappoint that person by admitting you’ve done nothing. Post your resolution in the mobilewomen.org forum, and we can be a support system for one another!

Although people make new year’s resolutions at the beginning of the year because it’s a tradition, it’s never too late to make a change in your life. If you think of a resolution in February, May or August, don’t wait until next January to make that improvement in your life. If you start something and fall off the bandwagon, tomorrow is a new day to start again. The strongest resolutions lead to ongoing lifestyle changes.

New year’s resolutions take work, and they’re a journey. They’re meant to be enriching to your life, but not always easy. Know that the effort that you put into the resolution will be worth it. You may end up helping not only yourself, but also countless others in the process as you share your progress. Take that leap of faith and be on your way to a healthy, happy and productive 2012!

To post your new year's resolution with mobilewomen.org, visit http://mobilewomengroup.ning.com, click on "Forum," and then add your post to the "New Year's Resolutions" thread under the "Miscellaneous" category!

Amy lives in Nashville, TN and works in the music industry. She enjoys spending time with friends, concerts, and volunteering for a local youth wheelchair sports and independence group.

Bringing the Extraordinary into 2012

2011-12-19T21:59:00.001-05:00

by Camile Araujo

As the year ends, I am delighted to say that 2011 was a pleasantly surprising year for me. I took on the role of mother, and I also put on the hat of “writer.” As long as I can remember and discovered that books were written by actual people, I knew I wanted to tell stories. I wanted to write. Then, as I grew older and my grandparents introduced me to classics such as "The Wizard of Oz," "The Sound of Music," "Gone with the Wind," "Singing in the Rain," "Mary Poppins," I discovered I had a yearning to write and one day direct a movie.

This past year, one of my dreams came true. I am now a published author in five different countries! I was invited to be a co-author in a book called "Extraordinary You: The Art of Living a Lusciously Spirited, Vibrant Life." The creator of the book is my Aussie friend, Vanessa Talbot. Vanessa brought together 11 powerful voices across two continents and compiled a book in which the reader goes on an inspiring, heart warming journey.

The book is proof to me that dreams do come true as long as your intention is congruent to your inspired nature. 2011 has been a blessed year and I am very grateful for all the opportunities and the lessons it brought for me. Because of the incredible opportunity to be part of this book, I have been invited to participate in other compilations and am working on my memoir as well as an inspirational novel. My memoir and novel are both due out next year.

Also, since my Yoga Nidra article published on mobileWOMEN.org, I have received many emails requesting my own Yoga CD or DVD. I am not a Yoga instructor, so in lieu of recording a Yoga DVD, I have recorded a guided meditation CD: The Voice Within Guided Meditation. My CD has four meditations that will help you relax and practice the art of breathing and gratitude. You can find the CD on iTunes or at www.amazon.com.

Next, I’ll focus on my dreams of having a story on the big screen!

Happy holidays to you all!!

The website for the book "Extraordinary You: The Art of Living a Lusciously Spirited, Vibrant Life" is http://extraordinaryyoubook.com. You can also visit its Facebook page: www.facebook.com/extraordinaryyouthebook. If you’d like a copy autographed by me, you can email me at camile@camilearaujo.com. Visit my website at www.camilearaujo.com or www.facebook.com/camilearaujo.thevoicewithin.

Congratulations to Alana Wallace, mobileWOMEN's First-ever Photo Contest Winner

2011-12-03T00:55:00.001-05:00

mobileWOMEN is proud to announce Alana Wallace as the winner of our first-ever photo contest! After carefully going through all our photo entries and their accompanying written submissions, we chose Alana as our "Ultimate mobileWOMAN"!

As the contest winner, Alana will receive a $50 Amazon.com gift card, an official mobileWOMEN.org coffee mug, and a Chair Flair cover, a fashionable accessory that turns ordinary wheelchairs into extraordinary wheelchairs.

We thank our readers for enthusiastically participating in our contest. We are proud to have you all as part of our community!

Alana's winning photo is posted above, and her explanation is as follows:

"I hope this photo “wheelie” highlights the fact that I am “The Ultimate mobileWOMAN!” I just celebrated my 60th birthday – but I feel more alive and vibrant today than ever! Growing up as a little “colored” girl whose hair wouldn’t grow pigtails like her best friends’, whose legs didn’t work like the other kids on the block, and as child who was told not to dream too big . . . never did I think I would grow up to become of all things a professional dancer!

For years after contracting polio at age five, I hid my leg braces, strapped down my way too big 32DDD breasts, covered my fat arms, and felt ashamed of my body. When dance came into my life - my hiding days ended. I now embrace my disability and my body in ways I never have before. I put on my form-fitted leotard, look in the mirror and I like what see – flaws and all.

To be “The Ultimate mobileWOMAN” you must believe as I do that the only limitations we truly have are stinking thinking and lack of imagination. I have learned that if I believe it, I can achieve it. Thus, I overcome all mental and physical challenges by first embracing them and then finding ways to turn lemons into lemonade.

I hope my photo and life example can inspire others to pop a wheelie and DREAM BIG!"

More than Fifty Years Later, Quadriplegic Deauville Continues to Beat the Odds

2011-10-30T23:25:00.003-04:00

Lani Deauville

When 17-year Lani Deauville dove from a seawall on a Jacksonville, Florida, beach in 1958, it didn't seem particularly risky. After all, the athletic champion diver was used to diving from bridges, racing cars at high speeds and generally, as Deauville remembers, "performing any scary activity I could think of." With this particular dive into shallow water, however, Deauville slammed hard into the ocean floor, breaking the fourth, fifth and sixth cervical vertebrae in her neck.

Deauville was paralyzed from the neck down. "If you broke your neck in the 1950s," explains Deauville, "you died. If you survived the initial injury, the life expectancy of a quadriplegic back then was five years." Quadriplegics typically have to battle of variety of health complications, including urinary tract infections, pneumonia, central nervous-system infections, gastrointestinal ulcerations, osteoporosis and bowel blockages.

Deauville refused to accept her fate. She changed from a neurosurgeon to an orthopedic surgeon when the neurosurgeon wouldn't recommend surgery to stabilize her neck, because he thought her case was hopeless. After getting neck-stabilization surgery and spending a year and a half in the hospital fighting skin ulcers, spasms and infections, Deauville became the first quadriplegic patient of the State of Florida's Vocational Rehabilitation Agency.

Over the next few years, Deauville pursued an education with the same level of drive that used to propel her adrenaline-soaked youth. She obtained her GED, entered Daytona Beach Community College and then went on to earn her undergraduate degree at the University of South Florida – all at a time when quadriplegics usually stayed home and out of sight. Lack of disability-friendly ramps and facilities sometimes meant that Deauville had to hire strong assistants to carry her up and down stairs. After graduating with honors, she was accepted to the University of Alabama to pursue a doctorate in clinical psychology.

During her eight years as a student, Deauville continued to battle critical illnesses that kept her hospitalized at least once a year. A dangerous infection ultimately led her to leave school and focus on regaining her health and earning income.

Lani with her son Ryan

Following stints as a rehabilitation psychologist and then as a coordinator in the Florida Department of Health and Rehabilitation Services, Deauville helped write universal-access legislation for disabled people that became law in 1974 in Florida and was adopted in part by the federal government.

"Now that the United States is more accessible to persons in wheelchairs, a physically disabled person can go nearly anywhere." In 1976, Deauville and her husband Jude were invited to the White House by President Ford, who honored her as "Disabled Employee of the Year."

In 1980, Deauville became the first female and disabled person to be direct the Florida State Vocational Rehabilitation Agency – the very agency that was responsible with her own rehabilitation years before.

But the recurring illnesses that tend to plague quadriplegics were attacking with increasing frequency, exacerbated by the fact that a very busy Deauville wasn't eating healthy food or getting enough exercise. In 1987, after retirement, she broke a hip and suffered from several infections. "Each hospitalization saw me ending up worse off than before," she remembers.

Everything changed in the late '80s. Her brother-in-law – Sam Graci, a Canadian biochemist – had been developing a highly nutritious "green drink" made up of superfoods that he thought might help improve Deauville's health. "Sam used me as his favorite guinea pig," says Deauville.

He continued to refine the powder into a supplement – mixable with juice or water – that became known as Greens+®. "I've been supplementing my food intake with this formula for 19 years," says Deauville, "and it has totally transformed my life and health. After suffering numerous hospitalizations for more than 30 years, I can say that I've not had a major illness in years, and I am healthier today than I've ever been."

Lani has been awarded with Guinness World Record
for longest-living quadriplegic

Greens+ is a whole food supplement consisting of 29 enzymatically alive foods. Each serving of Greens+ is equal to five servings of fresh fruits and vegetables. It helps to support the immune system, provide increased natural energy, strengthens mental acuity and cleanses and detoxifies the body.

In 1991, Deauville and her husband began distributing Greens+ to their family and friends, and – eventually – to health-food and healthcare professionals in 19 countries worldwide. Today, a variety of other supplemental products based on Greens+ are available, including the Chia™ product for cooking.

Given up for dead more than 50 years ago, Deauville has managed to beat the odds. In the process, she's lived a fulfilling life that has included improving opportunities for other disabled. At 71, she credits her longevity to healthy eating, Greens Plus supplements and exercise (she lifts weights twice a week and swims regularly). Along with all of Lani's other achievements, she has been awarded with the Guinness World Record for longest-living quadriplegic!

"In retrospect, I wouldn't exchange five minutes of my life with anyone. I am living a wonderfully blessed life."

For more information about Greens+, visit http://greensplus.com.

The “Original” Roller Girl

2011-10-16T20:51:00.004-04:00

by Tammy Wilber

AKA “Hot Wheels, # T-5/6”

When most people think of Roller Derby, the Drew Barrymore movie “Whip It” usually comes to mind. But not everyone has the opportunity to watch Roller Derby live. Fortunately though, the sport is rapidly increasing in popularity across the nation.

I didn’t have any exposure to Roller Derby until 2006, when one of my co-workers invited me to watch her. At the time I was Ms. Wheelchair Washington and was looking for some interesting and different ways I could break down the stereotypes of people with disabilities. Watching Roller Derby on that day, I became inspired to get involved. Roller Derby is not a wheelchair sport, but watching these women on skates speed around the track, I knew that I belonged in this arena somehow. I loved the fact that it was a women-dominated sport, but I wondered what role I could possibly play. After some brainstorming, the idea came up for me to be the flag bearer during the National Anthem. As long as I didn’t have to sing, I was up for the part. Once I was flag bearer for the first time, I was hooked!

It didn’t take long to figure out the best way for me to push while holding the American flag. During the National Anthem, I attach the American flag to my tennis wheelchair, which I can push and turn much faster than my everyday chair. I have to get going at a certain speed to make sure the flag waves behind me, and sometimes I add really fast spins to get the crowd going. I am known to the roller derby girls as “Hot Wheels” and my team number is T 5-6, which is my spinal cord injury level.

After my first “bout,” people came up to me and asked me if I got hurt as Flag Bearer? First off, no I did not get hurt participating in Roller Derby, but I have seen many women get pretty bruised from falls, get knocked down or land in the crowd as they round the corners on the derby track. This is a tough sport!

Tammy as Flag Bearer

The league that I became the Flag Bearer for was the Rat City Roller Girls of Seattle, WA. When I first started, their bouts were held at an old airport hanger, and after the third season they moved to a huge facility called at the Seattle Center. All the teams in the league wore funky team outfits, which included everything from fishnet stockings to skulls on their helmets. I loved it because once a month I could pretend it was Halloween and step outside my comfort zone and get crazy with my outfits. The atmosphere at the derby was filled with tough women on roller skates, hard rock music playing and a diverse crowd. This sport attracted everyone. It was so funny because I felt such a connection to these women and, even though they were all able-bodied, for a few hours each month they were all on wheels like me.

One of the most amazing things that came out of my participation in Roller Derby was what it did for my good friend Addie. A few years ago I met Addie while visiting her in the hospital when she was newly injured. She was injured while on Spring Break from college and became paralyzed from a rare surfing injury called Surfer's Myelopthy. From the beginning, Addie and I had a lot in common; I hoped I would be a good mentor. I learned that prior to her injury, Addie had been a competitive figure skater and loved being in the spotlight. One way I wanted to help Addie was by showing her different types of activities she could still try to keep her competitive spirit going. Together we tried wheelchair dancing, among other activities.

When I first told Addie about my involvement with the Rat City Roller Girls as their Flag Bearer, she thought it was pretty cool. Then one day a perfect opportunity presented itself. I had to travel for a work trip, and I asked Addie if she would sub for me at the next bout. I set her up with my tennis wheelchair and she practiced the turning and speed needed to make the flag wave. She was a natural! I asked Addie what it was like for her in front of the crowd of 3,000 people and she answered, “I remember being a little nervous before I went out with the flag for the first time, but as soon as the spotlight came on I felt comfortable. I found the experience to be very fulfilling and even thrilling. I had heard of roller derby before, but I knew nothing about it; however, I fell in love with the sport the first time I was the flag bearer.” Addie filled a void that existed within her as a competitor, and I was happy to know that anytime I had to miss a roller derby bout, she would take my spot!

Addie as Flag Bearer

While discussing our respective experiences as flag bearer, Addie and I shared the same feeling of typically being left out of the National Anthem tradition. You see, at many major sporting events, the announcer says, “Will you please STAND for the National Anthem?” In fact, a few years ago I wrote a blog about this very topic: http://tammy4varilite.blogspot.com/2008/09/please-stand-for-national-anthem-but-i.html. Addie stated that she found the idea of being the flag bearer exciting because it is another way of being involved in the tradition, and I can’t agree more.

After five seasons with the Rat City Roller Derby I was sad to tell the team I was moving to Las Vegas and would not be returning as their flag bearer. As sad as I was to be leaving, I was thrilled that Addie was going to carry on the tradition and continue what I had started. She has now been the Rat City Roller Derby’s flag bearer for a full season and said she feels like part of the team. Addie elaborates, “It is rare to see a disabled person highlighted at a sporting event like this, but I think it opens people’s eyes to the many abilities that disabled people have….I no longer feel left out of the opening ceremonies as I watch everyone else rise; I am now part of the ceremony and represent America.”

After moving to Las Vegas, I couldn’t believe how much I missed my role as flag bearer, so I contacted the Sin City Roller Derby. I wasn’t sure if they were going to be open to the idea of a flag bearer in a wheelchair, but they welcomed me into the league. So there I was in a new city, in a new derby league and, once again, I was representing women rollers during the National Anthem. Addie and I are both heading into our second seasons as flag bearers for the derby leagues in Las Vegas and Seattle. We are both having a blast and changing people’s perspectives about what it means to represent a different kind of “rolling.” Catch the roller girl fever and contact your local roller derby team!

What is Roller Derby?

* It is was invented in America and is a contact sport

* It was formed on the base of roller skating around an oval track

* It consists of two teams

* Points are scored when one player who is called “The Jammer” laps the members of the opposing team

* The National league is called Women’s Flat Track Derby Association

* Every derby player has their own unique name and number. Half of the time I never know the players real names, instead I might have to ask for “Momma Cherry” or “Pia Mess.” Here is a link to the “Master List” of all the Roller girls’ names: www.twoevils.org/rollergirls/

* For more information on Roller Derby, visit http://wftda.com

Tammy is working as a Clinical Admin Coordinator at United Health Group in Las Vegas and is also State Coordinator for the Ms. Wheelchair Nevada pageant. Send Tammy an email at Tammywheels@yahoo.com.

Enter our First Ever mobileWOMEN Photo Contest

2011-10-08T23:46:00.001-04:00

mobileWOMEN, it is time for our first-ever photo contest. We want you to look through your photos or think of taking a new one the depicts "The Ultimate mobileWOMAN." Along with your photo, you'll need to write a paragraph of approximately 150 words or more explaining how this photo in fact highlights "The Ultimate mobileWOMAN." Remember, being a mobileWOMAN encompasses so much and doesn't solely refer to a woman who's physically active; therefore, remember to think outside the box and show us what makes you a reflection of the community we represent!

IMPORTANT: To be eligible to win, contestants must be registered in the mobileWOMEN.org Community Forum. If you are not yet signed up, it is free and only takes a couple of minutes. Visit http://www.mobilewomen.org/p/forum.html to join our Community. If you have any problems doing so, please email info@mobilewomen.org.

We will judge each photo on the following criteria:

Relevance to category- Does the photo illustrate a mobileWOMAN?

Creativity- Does the photo have a unique quality, without being the standard posed shot?
Technical quality- Photo is clear, unblurred, no distraction from the subjects.
Overall impression- How does the photo impact us?

The winner of "The Ultimate mobileWOMAN" contest will receive a $50 Amazon.com gift card, an official mobileWOMEN.org coffee mug, and a Chair Flair cover, a fashionable accessory that turns ordinary wheelchairs into extraordinary wheelchairs. Thank you Chair Flair for generously donating to our contest. Please visit chairflairforyou.com for more information on these stylish covers.

It's time to show us your winning photo! Deadline for entry is Sunday, November 20. Email photo entries in .jpg or .tif format to info@mobilewomen.org. mobileWOMEN.org will contact the winner via e-mail by Friday, November 25, 2011.