Duchess Discusses Disability...

A Life Interrupted

2011-10-10T07:13:00.005+01:00

Stella C. Iwuagwu beams happily after successfully defending her doctoral dissertation..

Of all the stories I’ve written about or seen firsthand, Stella’s captures my thoughts and boggles my mind the most. This is perhaps because I know her personally. I knew her BEFORE the accident and I know her AFTER the accident. I think hers is a ‘life interrupted’. For many people who do not realize just the kind of person who Stella is…let me share this with you my dear readers, just to give you a little insight…As I said in my initial post, Stella founded the Center for the Right to Health (CRH), had been studying abroad and returned home to do her dissertation on Nigerian women living with HIV. What I’m about to share happened at the National Assembly 5 or 6 days before her accident…

Stella was invited to a seating of the House Committee on Health. After all the big people with big titles had made their speeches, they were about to close when she raised her hand to speak. The MC ignored her, she then raised both hands, he still ignored her so she stood up with both hands raised. He then asked the chairman what to do; the Chairman (late Hon. Aminu Shuaibu Safana) said, "let her speak we are in a democracy’. When they gave her the microphone, Stella wailed long and loud into the microphone to everyone's shock. Everyone must have been thinking she had gone mad. ‘Not yet’, she said, ‘This is the wail of the people dying in our hospitals. This is the wail of families who have lost their loved ones in our hospitals. I bring you the cries of people dying in their homes because they cannot even make it to the hospital. If any of you were to be in an accident, would you use our health systems as they are? No! You will be flown abroad for the best care at tax payers’ expense. I pray that the cries of the dying people of Nigeria will haunt you until you act for equity and justice. I challenge you in your four-year tenure to make our health care system one that you and yours can use".

By the time she finished talking, she was weeping emotionally. After her speech people gave her a standing ovation, while some people were crying with her, some came and hugged her including the Chairman of the Committee. He then committed to work with CRH to improve health care in Nigeria.

6 days later Stella was in an accident and the rest as they say is history. We later learned from someone that the same Chairman, Hon. Aminu Shuaibu Safana, collapsed at the National Assembly weeks later and was rushed to the National Hospital where he died…what an irony.

Yes…that is the remarkable person Stella Iwuagwu was and still is…a passionate social crusader, striving to bring change, challenging the status quo, and crying out for the masses.

Her current situation evokes different emotions in me and throws up many questions and issues for me. I am grateful to God that she survived the accident and is still with us, I am happy she that she is getting the best in terms of standard of living as a disabled woman in the USA. I feel so proud of her for all she has achieved despite her sudden disability, I am sad because I feel Stella’s pain, she now works twice as hard to make money, she currently goes through 40 hours of physical therapy every week, a lot of times she’s on painkillers which mess up her thought processes and she’s in such a demanding job, I’m sad because she wants to come back to Nigeria and continue her work as a social crusader changing people’s lives, but she cannot because Nigeria cannot offer her the basic standard of living she has become used to in the USA. But most of all I am angry because of the way she was handled at national hospital, I am angry because nothing has been done to compensate Stella for aggravation of her injuries, I am angry because cases like Stella’s abound all across Nigeria and nothing is done. Life is cheap in Nigeria, yes, LIFE IS SO CHEAP IN THIS COUNTRY.

Many times I have asked myself, what if Stella didn’t have friends in high places? What if Stella and her friends couldn’t afford the cost of flying out in a private plane or the cost of spinal surgery? Why were her arms yanked by hefty men from both sides during the x-ray and MRI? Why was it so difficult getting her into the ICU? Why didn’t the doctor on duty order a full spinal MRI same time as the head MRI? Even after they diagnosed the spinal cord injury, all they did was put Stella in a body cast, a process that required tremendous movement on her part, furthering the damage. Why don’t we have a neurosurgeon in National hospital? Why was there no letterhead to write up her report? Why did it take six days to evacuate Stella? Why did no personnel from National Hospital accompany her to Ghana? So many questions…not a single answer.

Stella’s story isn’t just about disability now, her story should evoke a sense of outrage in every Nigerian at home and in diaspora. If you have access to the best of life in diaspora, what about your friends and family in Nigeria? It’s a shame that, 51 yrs after independence we still struggle to have quality healthcare services in Nigeria. The only way a woman won’t die in childbirth is if her husband is rich enough to fly her outside the country to go give birth or just rely on luck. Same thing with even the most basic of health conditions, in Nigeria people die of snakebites, malaria, typhoid, asthma, pregnancy complications, etc. yet we Nigerians remain complacent while our ‘leaders’ send their children to the best schools in UK, US, Europe, etc, access the best medical care abroad, live in the best houses abroad while we’re content to lie low and be the underdogs eating crumbs for the table that’s rightfully ours.

The Nigerian constitution guarantees every citizen the right to life, right to healthcare, right to education, etc. when facilities that should cater to these rights don’t exist, haven’t our rights been violated? How can Stella access justice? Or do we chant the usual Nigerian mantra and say…leave everything to God?

Below is an excerpt from an email Stella sent to me when I told her that I’d published her story on my blog, it released the floodgates from my eyes…

Nne,
You made me cry. I cried from so many emotions…thanksgiving, pain, pride, grace…then when the song said ‘I made it through the rain’ I thought in my mind, yes, I made it through the STORM, but the RAIN continues. The rain continues as much as I continue to suffer chronic pains and disability. I am still in the rain as long as I continue to live in the US because I cannot really get quality health care or be able to go to my office in Nigeria because it is in the fourth floor and there is no elevator. I am still in the rain when many buildings in Nigeria are not accessible. I am still in the rain, because I realize how lucky I am in the US while there are millions of Nigerians with disabilities with little or no care or quality of life. When it rains on one it rains on all of us...Thank you so much Irene for telling my story, but do not praise me too much, I am just human with my failings. All I ask if for God to show me his purpose for my new life, that all these pain and suffering should not be in vain…

I’m not quite sure how to end this, so I’ll just say God help us all…

Duchess

Blogger Awards...

2011-10-08T11:17:00.010+01:00

It feels quite exhilarating to see that so early in my foray into blogsvile I have been given an award by 2 no, 3 amazing bloggers, all within the space of 1 week. I first stumbled across the stylish and versatile blogger awards within 48 hours of starting my blog and I never guessed that barely 2 months down the line I’d be nominated for the award, I feel deeply honored because I know the awards aren’t just handed out anyhow, your blog really has to make meaning for you to get the award, so thanks guys, must mean I’m doing something right.

The award rules state that:

You thank the blogger that gave you the award…

Share 7 things about yourself…

Give out the same awards to 15 other bloggers…

Then contact them…

I am quite lazy when it comes to writing (yea right) which is why it’s taken me this long to do the needful. Truth be told it’s the part of awarding 15 other bloggers that’s slowed me down, this is because I’ve come across scores of amazing blogs and there’s just no way I could narrow them to 15.

Today I said to myself ‘oya, get to it’ so here goes…

*chanting like Betty Wright* first of all I’d like to say good evening and I’m so pleased that so many of you could come out and share in all the love and all the happiness that I have in store for ya…I want you to have a real good time, cos that’s just what I have in mind, is that alright with you? *hearing the imaginary yeeeaaaa*

Ok seriously now, I want to start by thanking Myne Whitman, the very first person to give me the versatile blogger award. My eyes popped when I saw it and I felt deeply pleased, so thanks Myne…you’ve inspired me to keep doing it.

The next person to give me the award was Priscy, again I said to myself…damn! What’s going on in blogsville? Am I really writing great stuff? So to Priscy thanks sis…you made my day brighter the day you gave me the award.

Then finally my very own girl Menaukodoisready, stops by and drops the bombshell, another versatile award! I’m just speechless. Thanks Mena, thank you very much.

7 things about me:

In one of my earlier posts I did the 7 (actually 9) things about me so naturally I thought I’d run out of stuff to say again but…there’s just so many things about me...

1. I was really cute as a little girl, I had the most amazing hair. Many years down the line the cuteness I daresay is still there but the hair….hmmmm, all I can say is thank God for Brazilian and Peruvian tins and ‘Expression attach’ *said in my guttural Igbo accent*!

the beautiful 4 year old, note the lovely hair...

2. I have a very loud (and I think irritating) laugh and sneeze. I don’t know how to laugh ladylike, I’m still learning. When something amuses me (which is often), I can’t chuckle or giggle quietly, I just have to let out a boisterous laugh and I feel sure people (especially the ladylike ladies) stare at me wondering if I have a few screws loose. Same thing with my sneeze, I see some folks hold back their sneeze or turn it into a squeak and I’m like kai! how does one hold back all that breath that’s just struggling to come out? When I sneeze I let it all out, a very loud and pleasurable A-tishhh-ooooooo!!

3. I am fiercely loyal to friends and family. I can fight (not fisticuffs of course, hehehe) spend all my resources, etc just to defend my peeps. Even if they’re the guilty party I don’t wanna hear it, you just shouldn’t talk smack about them. Some people say this can be a bad character trait, because it means I may be able to condone evil, I say to them I have good friends and family, no evil people around me.

4. I have an opinion on practically anything and everything under the sun and I’m not afraid to say it and argue about it. At this point I’ll just quickly add something here which I seize every opportunity to talk about. I really have no patience for dumb girls who can’t hold a conversation beyond marykay cosmetics, Brazilian hair, the latest niteclub or nkwobi joint, etc, as soon as the conversation turns to ‘how will manufacturers cope now that the Nigerian government is making attempts to remove the fuel subsidy’, they suddenly go mute and hug their small stout bottle closer.

5. I read a lot. I love reading. A huge chunk of the knowledge and skills I have and use to make a living, I didn't get from schooling, I got them from reading. When you have a disability and find yourself in extreme pain a lot of times, going out to socialize isn’t always an option and lying at home feeling sorry for oneself is a No No too. So on days like those, I read, anything, novels, autobios, motivationals, fashion magazines, the Bible, etc.

6. Coffee is like water to me, I take more coffee than water in a day. I’ve been able to kick my other addictions except coffee. God help me. Perhaps I should also mention here that I've never taken alcohol in my 30something years on this earth...I've tried, pretended when I'm among friends (who down vodka, red label, 12 bottles of beer in one sitting), when they're not looking I empty my drink into the flowerpot, or pretend to fall asleep with the drink in my hand...till someone looks at me and says 'see her, she don drunk finish' and takes the drink from me, then I have to act all hungover the next day...kai! I belong in ~~nollywood~~..hollywood! hehehe

7. The simplest things make me cry, a child crying, a touching love story on TV, a woman struggling to make ends meet, a person in pain in hospital.

I should probably call this no. 8 but I don’t want to break the rules. I talk/write a lot, I’m trying to master the art of brevity in writing so pardon me for the long read.

15 bloggers:

So with that out of the way, I hereby award this award (hmmm…that doesn’t sound right) to the bloggers below. It was a bit of a struggle choosing from a list of incredible blogs, well after much thought and pondering I came up with these 15. I don’t have enough words to describe them individually but I chose them because they either inspire me or make me laugh or both. They all have unique, fresh writing styles that stand them out in their own right. I am glad to know and read them.

Myne Whitman

Nutty J.

Elcy - Life of a handmaiden in transition
Toinlicious
Priscy
Mamuje
Suagrbelly
Menaukodoisready
Surprise
The Truth

Life as I’ve lived it

Linda Ikeji

Le dynamique professeur

Welcome to Bold Caleb

An eccentric naija man

Errrr...pls note that these blogs are not listed in any particular order...#justsayin', lol

Overcoming Disability: The Story of Stella..

2011-10-07T15:01:00.011+01:00

Determination, patience and courage are the only things needed to improve any situation....Unknown

Today I’m sharing the story of a remarkable woman who has overcome sudden, unexpected disability to shine forth in her personal and professional life. This is a story of strength, courage, determination and an apt demonstration of what the love of family and friends can do in the life of a person. Its a story of accomplishment even in the face of adversity.

Stella’s story also draws attention to the reality of the fact that DISABILITY CAN OCCUR WHEN YOU LEAST EXPECT IT. How one copes with his/her changed circumstances determines if they’re truly disabled or just differently-abled. Her story also exposes how non-existent our emergency services are and how poorly trained/equipped our medical personnel and facilities are. It’s a long read, but one well worth it…

Stella Iwuagwu, is a trained nurse and the founder and CEO of the Center for the Right to Health (CRH), www.crhonline.org, a non-profit advocacy group based in Lagos that works to make health care affordable and accessible to all Nigerians. It takes a particular interest in the poor, the uneducated and those with HIV.

My late mother loved Stella like her own daughter, this is because of her simplicity, humility, poise and style not to mention her exceptional brilliance and positive attitude despite many challenges she had passed through. My mom would regularly ask all of us her daughters to emulate Stella as a role model, indeed that’s what she was and still is to me.

beautiful Stella before the accident

In 2001, two years after she set up the center, Stella got the chance to attend an intensive summer course in Washington, D.C., dealing with human rights advocacy. Afterward, she took part in a United Nations General Assembly special session on HIV and AIDS in New York. Connections she made in the States eventually led to an offer from the Oprah Winfrey Scholars Program for African Women in Public Service to underwrite the costs of earning a master’s in non-profit management at New York University. This is what she had always longed for as Oprah was one of her role models in life, so she went, she studied, she earned the degree. But once she finished, instead of returning to Nigeria, Stella decided she might as well go on and get a doctorate in health education.

Three years later, she finished her coursework and was accepted as a doctoral candidate. She decided to focus her dissertation on Nigerian women living with HIV and in September 2007 returned home to do her research.

On Tuesday the 18th of September 2007, while being driven from Abuja to Kano for an interview she dozed off. The next thing she remembered was a loud bang. A collision? A blown tire? Robbers trying to force the car to stop? She never knew. But suddenly, the car somersaulted across the road and tumbled and rolled into a ravine. When she came to, she knew from the pain that she’d broken her back and was able to speak to the good Samaritans at the scene on how to carry her out of the crashed vehicle, to prevent complications, and they did well. Stella and her driver were first taken to a local hospital and maternity in Zaria, as the nearby Ahmadu Bello University Teaching hospital was on strike. There she was transferred from the van that brought her into a stretcher and from a stretcher into a bed and then onto another bed. All this while, Stella was screaming from the pain in her back. No attempt was made to use a back board or log roll to minimize damage to her spine. An x-ray could not be done either because the X-ray center had closed. Stella was given shots to reduce pain, and the bleeding from the multiple lacerations on her head and knee were controlled. On Wednesday the 19th of September, 2007, Stella was taken to Abuja with the hope of getting expert care from Nigeria’s high brow National Hospital.

The National Hospital Debacle
On arrival at the emergency section of the National hospital, Stella was again transferred from the ambulance onto the hospital stretcher without a backboard despite her repeated plea that her spine was broken. In the emergency room, the attending doctor focusing only on Stella’s head injury ordered a cervical collar an x-ray and MRI of the head and cervical spine, ignoring Stella’s insistent complaint of pain on her back that was radiating to her chest. Stella’s family rallied around to raise money for the x-ray and MRI. Stella was wheeled to the x-ray and MRI department by a hospital orderly and her relatives.

It is pertinent to note that there were no paramedics at the National Hospital, security men and passers-by were asked to help move Stella first from her bed to the MRI stretcher and from the stretcher to the scan machine; Stella was the one giving directives on how to move her without causing more damage. At the x-ray point, people around Stella were asked to pull her hands very hard in order to get good x-ray of her cervical spine. Stella’s chilling scream of pain was completely ignored by the belligerent, insensitive attending x-ray technician. Both MRI and x-ray revealed that there was no head or cervical spine fracture to the joy of Stella and her family.

The next hurdle was how to get her admitted as she was told there was no bed space. She was told that only the CMD could influence her getting a bed space. Friends of Stella (including Ford Foundation West African Representative, their Senior Program officer, staff of CRH, the Country Representative of NIH and other development colleagues) who were by now aware of the accident started to network to get to the CMD. Finally, the Senior Special Adviser to the President on MDGs was contacted among others who got through to the CMD and a bed space was made available at the intensive care unit.

The Intensive Care Unit (ICU) Drama
On getting to the ICU, Stella was completely ignored while the nurse yelled at the orderly and Stella’s relative saying she did not have any bed space and was not expecting Stella. After several back and forth between the nurse and the emergency room via the phone, the nurse grudgingly made a bed for Stella in the ICU. Again Stella was transferred into her bed with no thoughts to her spine, while she screamed in pain. The next morning Thursday, September 20th 2007, the attending consultant assessed Stella during ward round with his team. At his directive, Stella was able to lift both legs and wiggle her toes. He reviewed her x-ray and MRI and was miffed that a full spine x-ray and MRI was not done despite Stella's obvious excruciating pain and insistence that her back was broken. He ordered urgent MRI of the full spine. Again, Stella’s family had to rally round to raise money for another MRI as the MRI technician bluntly refused to do it without cash on hand, even though Stella is an inpatient. The consultant reviewed the MRI that evening and confirmed spinal fracture at the T4 and T5 level, to the sorrow of Stella, her family and friends. By the next morning Stella was unable to raise her legs or wiggle her toes and had lost feelings from her toes up to her chest. Meanwhile, Stella’s need for nourishment was completely ignored; Stella’s friends had to complain to the matron in-charge before the nurses finally ordered food for her on Friday night.

In Search of a Neurosurgeon
The attending consultant recommended expert evaluation by a neurosurgeon. Everyone was shocked to find out that an apex Hospital has no neurosurgeon. They were told that a consultant neurosurgeon by name Dr. Shehu normally comes in from Othman Dan Fodio University Teaching Hospital in Sokoto. Dr. Shehu was expected the next day which was Friday but they were warned that the possibility of having Dr Shehu see Stella was remote because he had a long list, but again if they were able to talk with the CMD, she can be seen. They embarked on another session of getting to see the CMD in other to get Stella to be evaluated as she was now not able to move her limbs and body up to the breast level. Some of the very senior consultants at the Hospital who were approached to help talk to the CMD painted a grimmer picture. They were irked by the fact that the only neurosurgeon they had, left because of differences of opinion with some management staff. Very late on Friday night, (Stella’s 3rd day at the hospital), one Dr. Nasiru that works with Dr. Shehu arrived Abuja and was able to evaluate Stella at about midnight. His evaluation confirmed their greatest fears, a spinal cord injury. Dr Nasiru knew what needed to be done but did not have the requisite tools to do it.

In order to save Stella’s life, her friends decided to evacuate her to where she could get expert care. In order to expedite this, a medical report (MRI) was required to be forwarded to the potential hospital that would accept her for treatment. While various countries were being identified online as possible places to fly her to, including the US, Germany, South Africa, France, the UK and Ghana, another challenge cropped up as the hospital said that there was no letter head paper to write the official report until Monday when the administrative offices would be opened. Again they were told to get in touch with the CMD to obtain letter headed paper. This necessitated another round of networking to reach the CMD. This time they spread their dragnet to the Chairman of the Senate Committee on Health, Senator Iyabo Obasanjo-Bello who was outside the Country with the Honorable Minister for Health. She gave the phone number to reach the CMD. The team coordinator followed up with a call on Saturday morning and was able to get through to CMD who was at the time in the Hospital premises. Reassured that a letter head will be made available, Dr Nasiru was called and informed of the new development and he promptly said he would be available to do the report. The CMD was eventually seen and when asked why there was no neuro-surgeon at the hospital considering the strategic position of the institution, the CMD replied that there was actually one who according to him was “old, retired and tired”. He went further to state that the hospital was established for Women and Children eight years ago and not meant to cope with the current issues (Stella is a woman). Reminded that there were several highly qualified Nigerians practicing neuro-surgery outside the country the CMD retorted: ‘we asked them to apply, its online, they do not want to come home!’. Why would a well qualified and highly skilled professional come to such an institution where management decisions that concern human lives seem to be centralized in one person and is not supportive of on-the-spot decision making and innovation such as is required of such a facility? While at the ICU the CMD met with Dr. Nasiru and the doctor on duty and had discussions on the decision to move Stella out of the Hospital. While this was going on, efforts were being made to identify suitable hospitals in the countries earlier mentioned. The report was finally sent to the various specialists in four countries including Ghana. The responses from them were very rapid and in unison confirmed the need to get Stella out fast. It was decided that she be flown to Korlebu Hospital in Accra, Ghana.

Race to Get Stella Out of Nigeria
The next battle was to get an air ambulance, Rivers State government, Julius Berger, Aero Contractors, Virgin etc were all contacted. It was Mr. Tunde Oremule the MD of Associated Airline that came to the rescue and had to mobilize his crew within a short period to evacuate Stella. Back at the National Hospital, preparations were in top gear by friends of Stella to mobilize resources to pay for the aircraft and to get medical staff to accompany her to Accra. By Sunday morning, one of the doctors agreed to go, but on the day of departure, the team was informed that that he spoke with the CMD who said he was not aware of the decision, and so the doctor disappeared and switched off his phone. The CMD on the other hand was not picking up his phone either. The frustration encountered in trying to get a doctor and a nurse to accompany Stella in-flight, in case of emergency is better imagined as some members of the team broke down in tears not for Stella but for Nigeria. One of Stella’s friends, a highly trained nurse volunteered to be on board with one of the ICU nurses. The head of the ICU had to pace the hospital several times to get an ambulance to convey Stella to the airport. They had to rely on friends to get Stella into the ambulance as there were no paramedics available to handle what is a very delicate case that needed specialized hands.

While they were having hell in Nigeria trying to get the National Hospital to do the needful to get Stella out, the medical team in Ghana were calling every 30 minutes to know when the flight would be departing and landing so they could be there to receive her. While it was difficult to get National hospital to act in Abuja, the reverse was the case in Accra as on arrival, there were at least ten medical and paramedical personnel waiting at the airport with an ambulance to receive Stella..what a sharp contrast!

In Ghana, Stella got the first professional care in six days of having the accident, her surgery was performed almost immediately upon arrival by a very skilled neurosurgeon Dr. Boatey to whom Stella is very grateful. Her case got worse in Abuja because of very poor professional care, poor attitude and crippling management decision making process.

Stella with Dr. Boatey (surgeon who operated on her) in hospital in Ghana weeks after her life saving surgery

Stella's spine scar postop

Life After...
Four weeks later, her support team sent her to the St. Louis Rehabilitation Institute in the USA, where she spent two months in intensive, painful therapy trying to get her life back.

In the words of Stella....“everyone was depending on me...my staff, my clients, my aging parents with their own medical problems, my children...and I lay there helpless,” Stella said, tears spilling from her eyes at the memory. “I couldn’t even turn over in bed or sit in a chair without falling out of it.”

And then there was the pain.

“It was excruciating.. it still is, all the time,” she said. “It drives me crazy.” But she wears the armor of determination.

By December 2007, Stella was back in Carbondale, still actively working at therapy but bed-bound much of the time. And she still had her dissertation to write.

“I had to do the dissertation,” she said. “It was the only way to get a job, and a job is the only way to get insurance. And so many people had invested their time, money, prayers and energy in me. I had to get on with my life.”

The challenge involved in completing her dissertation loomed large. For one thing, the medication she took for pain made her drowsy. She had some memory problems, too. A strategy materialized after she met SIUC sociology professor Kathryn B. Ward, who has long fought her own battle with multiple sclerosis.

“Kathy said, ‘You can do this,’” Stella recalls. “‘Take it one minute at a time, and do something with your dissertation for just 15 minutes a day.’

“Kathy also bought me some books on meditation. She said, ‘Stella, it’s going to come down to mind over body.’ So I started meditating. It was hard for me to sit still, much less quiet my thoughts, because I had been a Type A Plus Plus.” So Stella set herself a goal. She would graduate in May 2009.

With the help of a study buddy, gradually, a bit at a time, she was able to read the transcripts and analyze the material and do the write-up, and every little success encouraged her to go further. While she didn’t make her May graduation deadline, she successfully defended her dissertation June 29.

But Stella had another goal, too. When she received her diploma, she wanted to walk across the stage on her own two feet. Her physical therapist Kim Booker worked hard to help her do it.

“I tell God every day, ‘I refuse to be helpless,’” she recounted a few days before graduation. ‘I am going to walk again because Nigeria is not accessible. I can get around in America, but the work I do requires me to be in the field, and my office is on the fourth floor with no elevator. Being disabled is not an option.''

Stella learning personal care

learning to walk again..

At 7 p.m. Friday, August 7, 2009 in Shryock Auditorium Southern Illinois University Carbondale, Stella Iwuagwu received her doctoral diploma from the College of Education and Human Services. Though she had hoped to walk across the stage unaided, she used a walker to make her slow way toward her future, but walk she did.

Today Dr. Stella C. Iwuagwu, PhD, MS, MPH, CHES, RN is an Associate Professor with Cleveland State University. She is in the Bachelor of Science in Health Sciences (BSHS) and the Masters of Science in Health Sciences (MSHS) program in the school of Health Sciences.

This is the story of the remarkable mum, sister, daughter, aunt, friend, colleague and role model called Stella Iwuagwu, she remains as beautiful, smart and vivacious as ever, only imbued with more inner strength and determination to change the world for the better.

Stella's story speaks a message to both the disabled and even more to the 'abled'. No one expects to become disabled, yet it happens every day and usually without warning. In fact disability will affect the lives of everyone at some point in their life, it is time society changed to acknowledge this. One of the key challenges for a person with a disability is to be seen by the public, to be portrayed in the media, treated by health care professionals, as an individual with abilities, and not just seen as a disability. Stella made sure of this by overcoming all odds to complete her tedious studies and get a job.
Stella was a role model to me before her accident and even moreso now that she’s paraplegic. I wish her many more successes.

In subsequent posts, I will do an analysis of Stella's treatment and compare the responses in Nigeria, Ghana and the USA..don't miss it..

I dedicate this song by Barry Manilow to Stella...I made it through..

Friendship and Disability...

2011-09-28T00:13:00.005+01:00

(For Eunice Itakpe Iranloye)

‘The worst solitude is to be destitute of sincere friendship’. - Francis Bacon

It’s been a hectic week for me, but I couldn’t wait to get back here! Today I’m talking about friends…yes, friends…those special people that come and go in one’s life and leave long lasting impact/memories. Good friends are part of the overall support network we all need. I know that there are several qualities that keep great friendship going, but for me, humor is key. Life is filled with all sorts of stress that being able to laugh at it and laugh at oneself is the antidote. Indeed, I’m not sure if it is really by accident or design that humor has been a great attraction for me to others; but I just have to laugh and I have to do so with people I love and who love me in return. Apart from my family, the only other people that crack me up in a good and wholesome way are friends!

For a person living with a disability, developing friendship can be a difficult enterprise. If you develop this disability early in life, it could determine the type of people that choose to associate with you. For instance, my childhood memories weren’t really fond ones. From my primary school days, I was constantly teased, bullied and taunted by kids my age. I would be walking to the classroom on my own when suddenly a boy would come knock me down and take away my calipers. I would lie in the dirt crying until news would get to my elder sister who was a class ahead of me in the same school. She would come running down with her own group to protect me from these bullies and even get into fisticuffs with some of them on occasions!

Frankly, despite being a very smart kid, I hated going to school, especially if my elder sister wasn’t going. I had little or no friends and buried myself in books. I was enrolled for the Common Entrance Examination at the age of 9, a class before the recommended eligible class. I passed in flying colors and gained admission to Federal Government College Kano on National Merit and earned with it a one year scholarship. However this held no real meaning for me, unlike my parents and siblings who were ecstatic, I was filled with fear and trepidation at the thought of being bullied and maltreated because of my experience in primary school.

But it was in secondary school I began to understand the value of friendship. Though, I began by resolving to stay aloof and maintain my distance from fellow classmates so as not to create any avenue to be taunted and teased; yet, my defences wouldn’t stand firm, thanks mainly to some schoolmates who cultivated my friendship without reserve. Today, we still keep that friendship and even where we lose contact a few months, a few years, whenever we reconnect, it is like no day was lost! This is because they have never made me feel ‘different’ around them, never pitied me or make me feel I’m not good enough. We share each other’s deepest darkest secrets, fears, hopes, aspirations, and loads of gossip and laughs and in their company, my disability is never an issue.

Apart from my friends from Federal Government College , Kano , I have made friends with several other people, male and female, from university and through work as colleagues and so on. But what the secondary school experience of friendship gave me is the confidence to cultivate real friendship with others without fear or suspicion. My friends then therefore remain the rock upon which I’ve built other friendships over the years.

At this juncture, I would like to pay a special tribute to a great friend from my days in secondary school who isn’t with us anymore. I had set out to write this without naming my friends, because I’m confident enough that they know themselves and do not need me to advertise them! However, one exception to that rule is Eunice Itakpe to whom I dedicate this post on friendship. Eunice died two years ago in Gambia from childbirth. She had been married for years, suffered several miscarriages, but the one she carried full-term finally claimed her. Eunice was a strong, brilliant girl who went on to become the Head Girl. Without making it too obvious, she looked out for me in every way. I recall her assigning a junior girl to permanently fetch water for me and run errands for me. Her friendship and loyalty were inspirational. She was patient, always had a listening ear and words of wisdom for all occasion. Nothing ruffles or panics her, a real rock. No day passes by without me thinking of her and the great memories we share along with my other friends. But I’m comforted knowing she’s in a good place. But she is one of several friends that have molded me and made me into the strong, happy person I am today. I’m mentioning her specially, because this post, as I said, is dedicated to her.

My Headgirl..Eunice Itakpe Iranloye

From the above, I’m sure readers are already getting the idea that if persons with disabilities are to form friendships and be a part of society as adults, these relationships must develop during childhood. I didn’t have much of that in primary school, but I was lucky to get it in secondary school and take it from there and spread it out to the rest of my life outside school. Classmates and neighbors will grow into adult co-workers and friends later in life. Therefore, integrated classrooms and recreational activities are important. In these settings, children with and without disabilities go out to meet each other and form relationships. It is burden enough being disabled, but keeping disabled kids away or excluded can only make things worse. Jamila, one of my closest friends from Federal Government College Kano recently said to me: ‘Odis, there was nothing different about you, I think the greatest thing your parents did for you was throwing you in boarding house with the rest of us and not shielding you from life!’ She’s right. My life experience confirms this and in fact, it does not only work with disabled children, but with other children who find it difficult integrating because of taunts and bullying of any sort.

For instance, few weeks ago a neighbor of mine asked me to intervene in the matter of his little girl who refused to go back to school because of taunts. I thought about this and wondered what to say to the girl and her parents. However, one thing was obvious to me. She was disabled, so I knew that she was suffering the same psychological trauma I suffered when I was younger. I knew she had no choice, but to face up to the challenge and build friendships, no matter what. But she needed the support of parents who wouldn’t be shielding her from the world! So, I sat both parents down and asked them to make it a point of duty to assist, encourage and guide their daughter to cultivate relationships and strong friendships as that is the only way she would be able to fit into society seamlessly and not feel different. It was a simple advice they took and I’m here watching out for the result. Everyone is capable of suffering rejection, disabled or not. How we choose to cope with it determines how we conquer it!

Back to the specific challenges of disabled persons in cultivating friendships, I want to point out that sometimes the way families and health professionals intervene sometimes make things worse. For instance, a tendency to focus more on physical and academic challenges than on creating opportunities for friendship and communication with their mainstream peers and one another could be counter-productive. A healthy combination of medical intervention and social integration would help such children better. Programs must be developed to make disabled children spend time with other children in an atmosphere that can build empathy and respect amongst them. As sweet and simple as my friendships with non-disabled people may sound, it isn’t without its own difficulties. Many individuals with disabilities interact primarily with their family and healthcare professionals, because they are the people who take care of or provide services to them. But they will leave these programs at some point and relate with others outside family. Preparing them early is key to their future happiness.

Obviously, mothers do have a great role to play in this preparation. Due to their special role as primary carers, it is crucial that they are carried along. In Nigeria , mothers of children with disabilities are a missing voice, as they are often absent from mainstream mommy related school or leisure programs due to their children's therapy and medical appointments and early intervention activities. Mainstream children's earliest social contacts are often with children whose mothers meet while they are pushing strollers at the park or shops, at neighborhood playgroups/kiddies parties or daycare centers. When the mom of a child with a diagnosis is not included in the mainstream of their community, children with special needs don't have those early interactions with their mainstream peers.

Mothers staying integrated in mainstream programs and neighborhood activities can accomplish as much for a child's acceptance and future friendships than artificial inclusion in mainstream classrooms because the children do not need to be 'introduced' thus setting them apart from the onset

As children grow up together, it is rewarding to see how natural positive relationships develop that benefit their classmates as well. Children with disabilities or special needs can be very important to their friends who also are overscheduled and overwhelmed, and who struggle with their own challenges that are often not acknowledged or accommodated.

Adults can make choices that help all children get along better together, reduce or eliminate bullying behavior, and provide options for those who find themselves in difficult situations. These choices often include a plan and a commitment to creating a respectful and safe environment, where children have access to grown-ups they trust to have their best interests at heart.

Often, when there is no plan and a commitment to create a safe and friendly environment for a child with special needs, mainstream peers are left on their own to figure out how to deal with one another. Most children and adolescents experience loneliness, fear that they will not be accepted if they allow others to know their authentic selves, and confusion about what they are supposed to do in even the most casual situations. Staying involved with other school/neighborhood moms teaches us that all families sometimes need a little help from their friends, and would like to create a safe and friendly atmosphere where their children are welcome and appreciated.

In conclusion, I acknowledge that generally, many people with disabilities face certain disadvantages in meeting and getting to know others. These disadvantages include, but not limited to the following:

Opportunity: Many people with disabilities have limited opportunities to take part in activities where they can meet peers. This may be due to physical segregation or being placed in a role as "clients" or "special education students." Services may restrict people's chances to get together through program rules, curfews, transportation restrictions, and other limitations. Whatever the reason, people with disabilities frequently become cut off and isolated from others. I think one way of cutting down this disadvantage is, as I explained above, opportunities for friendship with non-disabled persons. This has to necessarily be built into intervention programs.

Support: Relationships between people with and without disabilities are not formed by simply grouping people together. Some individuals need assistance with fitting into certain settings and activities. Others may need someone to facilitate their involvement or to interpret for them. Without support, some people with and without disabilities may never have the opportunity to know each other. Again, this will require specialist psychologists who would notice this and provide special programs of integration for struggling kids.

Continuity: While most people enjoy meeting new people, they are sustained by those they have known over time. The continuity of relationships over the years is an important source of security, comfort and self-worth. Many people with disability do not have continuous relationships. Instead, they may leave their families, be moved from one program to another and have to adjust to staff people who come and go. Again, this problem can be addressed by making sure that kids that have developed relationships with others aren’t cut off from each other. If there is necessity to separate them for program development purposes, avenues should still be created for future get-togethers and interaction. That is the way bonds and friendships are sustained.

Disabled people know there’s a lot of prejudice out there; while I am not advising that they go out and foist themselves on people as friends, they have to understand that there are also many people willing to be their friends and willing to love them for who they are, not pity them because they are disabled. If disability affects a part of parts of your physical body, develop other aspects of you, including the mental and let people see that you aren’t just a sorry sight! Having friends is important for everyone, not only the disabled. So, do not let your disability hinder you from enjoying the friendship and company of others! The organized disability community should also try to do something about this and must include in its programs activities that involve non-disabled people. Friendship is as important as independent living, employment, civil rights and all the rest. It's a lot harder to achieve when you’re feeling sorry for yourself or acting insular! Maybe that’s why I’m on a lifelong quest to make more and more friends! Catch them young! We can show children and teens with special needs and their mainstream peers how to make and keep friends by modeling friendliness and creating an atmosphere and structure of inclusion, cooperation and respect

I end this post with this song…the best things in life are free…including the genuine love and care of friends…thanks to you all for being MY FRIENDS…

Duchess...

The Forgotten Ones: The 7-Point Agenda

2011-09-19T01:33:00.009+01:00

So, I’m back from Lafia and now straight into the unwelcoming arms of some tasking piled-up weekday work on my desk! I had looked forward to a good sleep and catching up on movies over the weekend, but there is no rest for the wicked it seems! Work, writing proposals and of course, blogging must be done! I sigh….

“The Forgotten Ones” was initially the title I thought of to be my story about Altine; but I’ve decided to use it now to speak generically about the problems of her kind, my kind, because there are hundreds of thousands of Altines out there crying out for help and I just think focusing on her, just because I was in close contact is to muffle the cry for help of all others in similar state. Obviously, I suffer from disability too and can class myself with her, but that would be totally unfair, as it boils down to degrees of disability, means and access to required help to make life better. I see my role as using my mental and material resources to raise awareness of the plight of the most vulnerable in our group.

Okay, before I get on with the main purpose of this piece, a little update on my illness for those who’ve been asking about my health is in order. First, a little confession….I’ve been self-medicating almost to my detriment! You know, old habits die hard as I’ve always prided myself on being very ‘healthy’. I don’t fall sick easily, I haven’t been inside a hospital in 10 years; so, I beat my puny chest proclaiming that my immunity is so high that when the occasional ‘flu’ strikes, I swallow a couple of pro-cold tablets, eat pepper-soup for a few days, take a nap and spring back into action without fuss. This time though, after doing all that, I just wasn’t getting better. I started running high fevers and my chest was wracked with a horrible cough! The superwoman was crumbling before my very eyes, yet, doggedly, I persevered in my self-medication! Concerned relations and friends waded in. “Go see a doctor, Irene!”, they clamored. But I always found something to say to ‘convince’ them I didn’t need to. “Stop the drama, people! This is just a little catarrh that will soon run its course!”

Luckily, not every one of my friends allows me get away with stupidity! A good doctor friend of mine didn’t buy my tales! You want to know his name? No! He’s too shy to be mentioned in a blog (wink, wink). He insisted on feeding me with antibiotics and within hours, and I mean hours, I was feeling as good as new! Fever down, cough gone, sore throat missing, nose cleared! It was a miracle! Apparently my Lafia sojourn had left me with some respiratory tract infection and this Dr Magic knew exactly what I needed while I dosed on my old routines! Moral of the story? Even if you’re as healthy as a prancing horse, self-medication is no good! Here I am, a new convert to the Anti-Self-Medication League, feeling as good as new and able to put ~~pen to paper~~, my itching fingers to a keyboard without sneezing up my computer screen!

One good thing though, I think I lost a teeny-weeny bit of weight due to this illness. How did I know? Well, a few weeks ago, in my bid to look sexier and trimmer, I acquired the garment popularly known as Body Magic. I paid for it and waited 14 days to get it shipped to me from the U.S. It got to me in good nick, only for it not to fit! What!? The largest size in the market and it didn’t fit? I tried all I could, got two hefty male relations of mine to stuff me into it, no luck! I gave up, got depressed and said to myself worrabloodyheck! I turned up my nose at the rebellious garment and seriously began bingeing on ice cream, chocolates and all sorts (just kidding)! Then I woke up one morning (after my Lafia adventure), spied the garment where I’d tossed it in annoyance, picked it up, tried it and voila…it entered! Okay, it wasn’t exactly a perfect fit, but at least I was able to get into it! I did a jig in celebration and pumped my fist in victory, but that was until I attempted taking it off! Wahala! Let’s just say I still have a long way to go before I can effortlessly use that garment. I’ve put all the blame, every bit of it, on that Ardyss Company for not making garments large enough for people my size! After all, I’m not that big, or am I? Okay, maybe a little blame should grudgingly go to my massive backside that can’t seem to fit into anything (lol).

While we’re still on the matter of updates, I’m pleased to announce that 48 hours into the Petition, we hit the 100th signature milestone and still counting. It’s not much considering I thought I had many loving, caring, friends who would lay down their lives for me (I guess I thought wrong). But, seriously, it’s a great start. It means a considerable number of people have heard about the Petition and are spreading the word. Little by little, we’ll get there.

Now, just as I intimated earlier, I would want to share with you some of my thoughts on what I think the problems are generally with our official and societal treatment of PWDs and what I think needs to be done to address this problems and make our society a more caring and considerate one. While I am not by any means saying only women with disabilities should be our focus, the Altine story is my springboard for this discussion and my narrow aim here is to focus on the challenges of women with disabilities, even though a lot of what I’ll be saying applies to both sexes in varying degrees. I’m doing so, because I believe disabled women are evidently the more vulnerable and treating them as priority can go a long way in changing the face of the problem generally. I’m not going to get into giving any technical background, because I want to make this as simple and straightforward as asking people to encourage others to understand the issues as they are and make recommendations:

1) Lack of proper facilities for physical therapy for PWDs: This is the natural place to start, because the disabilities we speak of here is physical and lack of facilities for physical therapy is a core problem aggravating the conditions. For instance, Altine’s legs were not that bad 10 years ago, but they steadily worsened due to lack of proper medical attention and physical therapy. I experienced the same thing in my own case. I added weight as my leg worsened. Now I’m battling both weight and leg. Ideally, facilities should exist to ensure that physical disabilities do not degenerate into worse conditions.

2) Poverty: When I speak of poverty here, I’m not talking of the general poverty in society that a lot of our countrymen and women grapple with daily. I’m talking of poverty as a cause and consequence of disability, especially in the case of diseases-related disabilities. For instance, Altine had a wheelchair donated to her early on in life; but in order to ‘get rid’ of the burden she had become, her only dignifying means of mobility was sold off to buy her ‘kayan aure’. Maybe if my parents had not been educated nor have the means, I would have been in the same situation.

3) Social conditioning and lack of choice: It would seem that disability at a level condemns some of our countrymen and women to a life in which they have no say, with choices made for them by persons supposedly caring for them. The consequence of this is that in certain situations, such choices made for them make their conditions worse and condemn them and their offspring to even a worse condition. For instance, Altine was married off to a person living with leprosy, because her folks felt that was the best they could get for her in her condition. The cultural pressure to be married and go on to raise a family of her own while offloading what they possibly considered her burden on them dictated such a decision. She had no say in it, because of her condition. While I fully understand that sometimes it isn’t within the power of the disabled person to choose an able partner, does it really make sense to get high numbers of disempowered disabled persons married off to other disempowered disabled persons? Doesn’t this compound the personal and social problems we should be striving to remedy?

I think ideally, couples should complement each other and social and medical policies should be geared towards encouraging this. One way to encourage this would be the payment of disability benefits to seriously disabled persons, so as to give them a chance to live decent lives and be less dependent on an able-bodied person in position to make decisions for them that could be more detrimental. Such support in itself will attract able bodied persons to them, not necessarily because they have money, but because that money affords them the opportunity to date and socialize on the same planes with the able-bodied. The Altine case is a clear example of how deprivation can make such life choices as marriage and raising a family a worse experience for a disabled person. I mean, Altine’s two children have polio and her co-wife’s two children have polio, creating a vicious cycle of undignified disability with huge social consequences. Doesn’t this just tear your heart apart? What would be the consequences for society in the long run if we don’t step in now and do something? Empowerment is the key and government must play its role and encourage the rest of society to do the same.

4) Maternal conditions of disabled mothers: One of my readers pointedly asked how Altine could carry pregnancies in that condition. I must be sincere, I cried later in my hotel room imagining Altine crawling about with a pregnancy. How can a society stand by and watch such a situation and do nothing? Where is our humanity? Again, this is where targeted social policies work. If we value life and the dignity of every person, we must provide special antenatal and postnatal facilities to cater for those women in Altine’s position. We must increase the chances of the unborn not turning out like their unfortunate parents.

5) Unsanitary environment: Personally, I don’t know how people cope in unsanitary conditions. I can’t eat, sleep or function in unsanitary environments, because the major thing that affects my productivity is the cleanliness or otherwise of my environment. But while some may consider me a cleanliness freak, I do believe there are minimum sanitary conditions necessary for healthy development of all, including disabled persons. While there are personal responsibilities for hygiene with everyone, disabled or not, disability does limit the person affected in several ways. For instance, disability could make it impossible to stand/squat over toilet seats or take a bath in an unhygienic place. Can you imagine crawling on your hands and feet to use the bathroom in a public place where people inconsiderately pee on the floor, splash water everywhere, spit, etc? I think it’s critical that building and tenement policies are put in place to require public and private buildings (especially those for rent) make constructional provisions in for the disabled.

6) Social stigmatization and discrimination within the disabled community: One of my friends, OJ was quite indignant at the fact that on the last day of our Convention, there was crowd control and the disabled locals couldn’t attend. He pointed out that that in itself was discriminatory. To be honest I hadn’t thought of it from that angle, as I have always looked at it from the larger societal discrimination and stigmatization of the disabled person. This made me conclude that discrimination on the general level would seem to have affected how some of us also see ourselves. Of course, the argument can be made that not everyone can attend all events, especially the ones requiring some level of literacy. I mean, not all able-bodied persons attend or are allowed to attend any event just because they are able-bodied. However, the crucial difference here is that if we are trying to spread a message on the mass level, how we treat our own matters greatly and could indeed be a signal of how others treat us, especially in a society where there is near-institutional discrimination against disable persons. For organizers of events for disabled persons, my advice would be that while it is impossible to get everyone to attend or be part, because of the obvious impossibilities, the key issue would be to ensure that less literate PWDs or more severely disabled persons not able to participate are not left out of whatever benefits that may accrue from such events and our activism. It would be a great signal to the rest of society as well that the way we treat our own is the way we want them to treat all of us. We the disabled need to know that no one will be prepared to change their attitude about us if we, the enlightened members of the disabled community, do not work hard enough to show that we are one. So, yeah, this Point No (6) is directly speaking to disabled people themselves!

7) Parental responsibility and socio-cultural discrimination and stigmatization within the larger society: The final issue I want to highlight is parental responsibility and here I will also touch on the socio-cultural stigmatization and discrimination within the larger society. This twin problem actually emblematizes the notion of “The Forgotten Ones” better than the others, because it touches and challenges the core of our humanity right up to our homes and our national institutions. It is not a secret that a large number of parents (especially the less enlightened ones) treat their disabled children like they’re cursed and therefore condemning them to begging or a less than human existence. I suffered polio at the age of three, but my parents never kept me hidden or separate (as I see some parents do). I was kept among other children, sent to the same schools as others and treated with love and affection like all others, so those others didn’t see me as ‘different’, because my parents never treated me any different from them. Obviously I was teased and taunted on occasions, as is expected with kids who don’t know better, but not only did that make me stronger by making me develop extraordinary courage to stand up to bullies, I was helped all the way by my able-bodied siblings who didn’t see me differently. It is difficult enough facing prejudice, stigmatization and discrimination outside, but to have it amongst those who should first show you love is the next thing to death! Thus, less enlightened parents need to be specially sensitized on the fact that ‘disability is not a curse and that a disabled child will not grow into a burden if he/she is treated normally and given all opportunities needed to live a productive life.

However, for this to work, state-sponsored disability education and orientation for parents and their disabled children would help, because that is also the bridge to the heart of the larger society. I say this because all over the country, there are ‘homes/institutions’ that can only be aptly described as ‘shitholes’ where PWDs are kept in less than human conditions. You will find all categories of disabilities in these homes with zero-standard facilities and care. Everything there indicates that these are places where the disabled are dumped to rot! Why, because parents and relations who do not care dump them there and social workers there have no scrupled treating them as sub-humans! In such an environment without salutary sanitary conditions, no medical care, no form of leisure or constructive engagement of the minds of its inhabitants, a PWD with only a limb issue for instance will eventually lose his mind too!
The usual excuse is that there is no funding and government officials are quick to let you know that they aren’t priorities, forgetting the huge social implications of such an attitude! The point I’m trying to make here is that bad parental attitude or bad attitude from relations of disabled persons is a microcosm of the general bad attitude of state officials and the larger society of which we are all part. Everyone must work to change this attitude, because it speaks of our heartlessness to let this go on! So, I’m proposing that a huge social mobilization drive needs to be undertaken to get parents, governments, private philanthropists and civil society groups to begin to look at means to put the condition of the disabled on the front-burner of public policy, so that we can get the required funding and support to run these places like good homes, train personnel and influence a change in personal and general attitudes towards the disabled.

I know some of you will accuse me of being a starry-eyed dreamer and you’ll be right to an extent. However, the extent to which you’re wrong is what concerns me. I know a lot of work needs to be done on this issue, but we just have to start from somewhere. All I’m doing here is trying to generate discussions that will lead us to begin that process. Rome was not built in a day, I know! The health of any society is only as good as the health of its most vulnerable members!

Dear friends, I welcome your thoughts on how we can proceed in addressing the above issues, because all I have done is highlight them.

NOTE:

This is to acknowledge some of the amazing responses I’ve been getting from readers on the Altine story, both from Facebook and here on the blog. It’s been such an incredible outpouring of love, compassion and commitment that I cannot thank you enough. Indeed, some of my Facebook friends are already talking about raising money, clothes, foodstuff, drugs, etc to send to Altine and her women! Some are also seriously organizing and discussing advocacy moves on a national and regional level, including reaching out to Northern governors and women leaders in the region with a view to putting these issues in the forefront of public policy. I cannot predict how it will all go, but this is a wonderful start, if only for the fact that more of us are getting sensitized and informed on these issues. Women like Altine need some form of economic empowerment. Having to make a choice between having a wheelchair and food is just not right. A wheelchair is not a luxury it should be a necessity. If we can make any sort of headway in opening opportunities for economic empowerment and dealing with the sexual and reproductive health issues, that will be a huge start. We are blessed, but “The Forgotten Ones” need a little blessing from us as well. Are we really ready to show the face of our true humanity? We live in hope!

Duchess...

The Silent Cry of Altine...

2011-09-14T04:41:00.002+01:00

Okay, let me admit, I’m not fully recuperated; but I just couldn’t stay away any longer! I need to keep my mind occupied! Lying down all day and night just isn’t fun! The rebel in me has won and I’m back!

Now, as I told y’all in my last post, I met a lot of remarkable persons at the Convention; but two of them stood out for me - Dr. Samuel Ankeli and a lady simply known as Altine. Before I say more about them, let me share just a bit of my thoughts and feelings from the Convention, and before that, first a bit of background.

JONAPWD stands for Joint National Association of Persons with Disabilities in Nigeria . It is an association of persons with various forms of disabilities including, physical / mobility impaired, visually impaired, deaf/hard of hearing, spinal cord injury, the developmentally challenged and albinos and so on. JONAPWD held her annual convention with over four hundred delegates in attendance drawn from all over the country.

This was my first time of attending the convention so it was quite a profound experience for me being in the same room with so many PWDs. As the program commenced and we waited for the arrival of delegates and dignitaries, there were musical interludes of Hausa music which I thoroughly enjoyed.

One striking thing was the diversity of disability on display even as the National Anthem boomed from the speakers…

..some could see and hear the proceedings but they couldn’t stand

…some could stand and hear but couldn’t see the proceedings

…some could stand and see but couldn’t hear the proceedings

…some could see, stand, hear but couldn’t comprehend the proceedings

That was deep for me…really deep; made me imagine all the challenges faced by the disability community in Nigeria , both at individual and community levels.

Trust me to introduce myself my style as I promptly got into an argument with some delegates about which disability was more ‘severe’ (without meaning to trivialize any disability). We were considering it purely from the viewpoint of vulnerability. But it was an inconclusive discussion (as is usual with such discussions), despite very many relevant point raised to support each viewpoint. Now, I’d really like to know what you my readers think. Is any disability ‘worse’ than others?

Yes, I did say I was going to say something about two humdingers. The first one, Dr. Samuel Ankeli is a visually impaired veterinary doctor, an activist for disability rights and a grassroots politician. He was the Chairman of the Convention Planning Committee. To be honest, the first thing that hit me smack in the face is just how handsome the guy is (Below is a picture I took with him….)

Dr Ankali and Duchess Irina

such beautiful but sightless eyes...yet such an insightful man

Sightless Dr Ankali is an expert at identifying beauty! I know, because I was his guinea pig! The first time we met, he went about his beauty-identification routine by first touching my nose, then my eyes, lips and then he said: “Wow! Irene you’re so pretty!” Yea, this blind guy identified my hotness so eat your hearts out! hehehe! By the second time we met, he could identify me just by my voice. A remarkable man Dr. Ankali is…very hardworking, brilliant, passionate, selfless…and oh so handsome and well built, smooth, suave, a perfect gentleman.

Now about Altine…just like Dr. Ankali, Altine is another sight for sore eyes…really pretty and with an amazing smile. She is however illiterate and speaks only Hausa, thank God for my fluency in the language (it’s my main language actually, next to English) I was able to chat with Altine in a sort of informal interviewish kinda frank way. What drew me to Altine is something that I just have to draw attention to. With the current North/South polarity in the country and the Muslim/Christian divide fuelled by the BokoHaramists, this is one sensitive issue, but I’m an advocate, so I must speak out.

Polio has ravaged and is still ravaging the Northern part of this country. As I said earlier, in all my years of living with a disability, I have never been in the same room with so many PWDs in my entire life so I had a lot of shocking moments when I witnessed certain physical conditions among the polio survivors. I was confronted with limb deformities such as I’ve never seen or suspected existed in my life, all attributable to polio. It took all I had in me not to stare, I would have taken pictures but in my line of work, preservation of human dignity is one of my personal and organizational core values so I refrained from taking photos and instead decided to use my imaginative and narrative prowess as best as I could to do an illustration. I will therefore attempt to paint a picture of Altine as vividly as I possibly can. As I describe this, I fight back the tears….

Altine is about 28yrs old, pretty and light skinned. Though an adult, she is about the total length of a child of 7yrs, she crawls on her stomach, using her hands to drag herself forward, her two legs are scissor like and crossed in the air behind her and pointing upwards. When she has to prop herself up, she uses her elbows and what’s left of her badly scraped knees as props and levers herself up to her destination, she cannot sit on her buttocks as the 2 legs are crossed behind her permanently so she resorts to lying down or half-sitting on her side.

In spite of her obvious discomfort, each time she passed by my seat, she would flash me a dazzling smile. The advocate in me got worried about the scores of badly misshapen and deformed conditions I saw especially among the women, so the researcher in me was prompted to ask questions and get answers.

Below is a transcript of my discussion with Altine….Brace yourself as you read….The entire conversation was conducted in Hausa language.

Me: (beckoning at her to come to me) How are you?

Altine: I’m fine aunty, how about you?

Me: I’m fine too darling, what’s your name?

Altine: My name is Altine

Me: Altine is a lovely name. I plan on giving my daughter the name (truth)

Altine: That’s nice aunty; hope you will invite me to be the godmother (laughs). Aunty, you don’t look Hausa but you speak it so well. Where are you from?

Me: (I laugh) Guess where I’m from Altine (I’m trying to loosen her up and get familiar)

Altine: Aunty I’m illiterate, how would I know? But I can tell that you’re not Hausa….Ok ok….you’re from Yorubaland

Me: (amid laughter) Wrong! I’m nyamiri (Hausa way of describing the Igbo) but I was born and brought up in Kano .

Altine: No wonder! You speak like a Hausa donkey (colloquial Hausa expression)

Me: Altine, but why do you and your friends (other women) choose to crawl on your hands and knees, if I’m able to get you wheelchairs, wouldn’t you rather be on wheels at least to maintain your personal hygiene (I am very big on hygiene)

Altine: Yes, some of the women would be able to use wheelchairs but some of us wouldn’t because of the peculiarities of our conditions. For instance, I used to use a wheelchair when I was younger, but my father sold it to be able to pay my dowry when I was being married off. Besides my legs worsened to the point of crossing behind me so I won’t be able to sit on a chair anymore unless you want to get me a ‘wheelbed’ where I can lie down and wheel myself (she laughs)

Me: (laughing along) Altine, so you’re married? Where is your husband?

Altine: Yes I am married aunty; been married for 10 years. My husband is not around. He’s a person suffering from leprosy.

Me: Hmmm…how old are you? Do you have any children and where are they?

Altine: I’m not up to 30 years, but I know I’m more than 25 years. (I pegged her at 28). Yes, we have 2 children (on further probing it turns out that both kids (ages 4 and 7) have polio as well). My husband has another wife with 2 kids too, they also have polio.

A long pause from me…I just couldn’t believe what I was hearing

Me: what do you do for a living?

Altine: I sell kolanuts

Me: Kolanuts? How much would you make in a day from sale of kolanuts?

Altine: Not much, sometimes 150-200naira, but it augments what I get from begging..

Me: You beg as well? *awkward silence* then I change the subject

Me: Would your fellow women like me to get wheelchairs for them?

Altine: Aunty any kind of assistance at all would be appreciated. But let me be honest with you, food comes first on our list of priorities. If you give us wheelchairs without food, we may sell them to buy food. Although we need the wheelchairs to help us get around, but will our children starve while we ride around in expensive ‘disabled cars’?(She’s referring to wheelchairs here) (laughter again)

At this point I was overwhelmed with emotion. Her colleagues were beckoning on her to join them, so I let her go. I asked if she had a phone, she didn’t, but said she would get a number I could use in reaching her and give to me the next day. I made a promise to get whatever I could for her and her womenfolk. She turned to leave and suddenly, as if on second thoughts, she held out her hand for a handshake, the same hand she uses to crawl past gutters, crawl into toilets, etc. I, the ‘germ fighting freak’, took her hand and even leaned down to give her a hug. In that moment I knew Altine had given me a test. She wanted to know if my ‘concern’ for her wellbeing was genuine. She had probably seen me sanitizing the seats, the banisters, the handrails etc so she wanted to know if I would walk the walk and not just talk the talk. I am so glad I didn’t fail the test. I didn’t fail the test because I am genuinely concerned for Altine and her womenfolk. Sadly, the next day we had crowd control and many of the local PWDs were not let in, so I didn’t get to see Altine again till I left but when I’m good and ready I will find Altine by hook or by crook.

I will speak very briefly on the issue of polio in Northern Nigeria. For how long will this continue? Women like Altine abound in Northern Nigeria. Her four children have polio and on further enquiry from locals, I found out that most women with polio have at least one kid with polio as well. I am making this a Northern Nigeria issue because I have never seen such polio-related deformity in the South. What is the reason? These women and their children don’t even stand a chance from day one of entering this world! They’re condemned to life as beggars, even when they have enormous potential. What are Northern leaders doing to address this scourge in their land?

I am by no means rich, but I am passionate about causes I believe in. As a single woman, I currently finance the education of three children with disabilities in primary and secondary schools in Abuja. They’re not in the poshest of schools, but they are in good schools and they are receiving a good education. I am a well-educated and independent woman today because my parents believed in education especially for me, the least I can do is give someone else that same fighting chance my parents gave to me.

Many times I have been torn between buying cooking gas at home or buying a new deep freezer or even buying a new blackberry or iPad and paying the fees or buying books for the children. Each time I ask myself, ‘Irene, which one will let you sleep at night?’….My answer has always been the same.

Since my return from Lafia, I suddenly feel inadequate, I feel like I’m not doing enough, I need to get wheelchairs for those women, I need to get food, clothes, drugs, for those women, but how? That’s the question….How?

I can’t get Altine's words out of my mind; I can't stop thinking that she has spent her whole life struggling with the challenges of an illness without the appropriate mobility aids for herself! And now, her children…. Altine has become for me, the voice of the polio survivors crying out for recognition…the silent voice that no one will hear unless we decide to listen….Are we listening?

Duchess

A Tale of the Hinterland...

2011-09-12T21:27:00.002+01:00

Hello people,

At last, I feel slightly strong enough to pen down a few lines, after this I may take another few days off to recuperate fully but I just needed to put this down to let y’all know that I’m alive.

Before I say what I’m gonna say, I wanna apologize to anyone from Nasarawa State who’s reading this, no vex please, I’m just speaking my mind.

As some of you may recall, I’ve been talking about the National Convention of Persons with Disabilities coming up on 5th – 9th September in Lafia, the capital of Nasarawa, I’d planned to update my blog with a minute by minute update of things happening at the convention but when I got there my eye see strong thing!

First of all, there was no internet connection, yeah you heard right, NO INTERNET in a Nigerian capital city in the 21st century. Ok, if you know me well, you’d know that I died and resurrected at the thought of being cut off from communication (blogosphere, FB) for almost a week; but there was nothing I could do, I had to stay put and endure my ordeal because I was at the convention to make my voice heard and my opinions count.

I got back to Abuja on Friday and fell ill instantly... its almost as if my body were trying to purge me of all the ‘kondus melendus’ I may have picked up in Lafia. Ok before I digress, let’s get back to the main issue…

The hotel... in the entire Lafia there’s only one nice hotel, owned by the Governor. By my standards it is dingy (hope Mr. Governor isn’t reading this) but to others it’s the sexiest hotel, so make I gree. Let’s just say that while in Lafia, I faced fundamental health and hygiene issues from the hotel, to the venue of the event, it was one hygienic matter after the other. Believe it or not, I went thru a whole bottle of sanitizer and another of Jik and Dettol all in my effort to remain germ free. At some point I wondered if I had to drink the Jik sef.

Abi should I talk about rats running around in the ceiling; abi the generator that comes on at 6pm and goes off at midnight, signaling the cockroaches to come party? Meehn! I suffered in Lafia sha… I had to stay awake one night keeping vigil with my phone torchlight because a cockroach flew past me, I knew he (makes sense that a cockroach would be male, abi) was still in the room and because I have a morbid fear of roaches, I couldn’t sleep till daybreak.

The glaring issue here is that we just don’t have a culture of maintenance in this country. The most fine-looking edifices are put up; very beautiful on the outside, but just go inside and see the mess they’ve turned into one year after being opened. No one bothers with its maintenance, yet you see young men and women milling about the place in droves calling themselves cleaners, and still the bathrooms stink to high heavens (I preferred peeing in the bush than in the toilet at the venue)

In the first hotel I stayed at, I had to bathe outdoors before the break of dawn because, if my skin came in contact with the walls of the bathroom, I would definitely have had to burn it all off. So, I had two options, do 'dry-cleaning' (~~high school~~, sorry, secondary school parlance) or bathe outside for 4 days. Dry-cleaning means using a little water and possibly a face towel to clean ‘vital areas’ then use nice fragrances to mask any other 'fragrance', at my age I wasn’t gonna do that so it had to be bathe outside in the cover of night…

Another shocking matter for me was the fact that in a state capital city, there are no taxis only okada (motorcycles). Considering that 80% of delegates at the convention were either mobility or visually impaired, I was baffled as to what the organisers were thinking. Imagine someone who uses a wheelchair or crutches sitting on okada while the okada rider struggles to hold steady the wheelchair/crutch. Seriously, my friends how does a state capital not have taxis? *bewildered*

Well finally sha, 4 days came and went, I had a nice time (barring the hygiene challenges) and made new friends in the process…

Drugs have kicked in so I’m gonna go to sleep now, hopefully tonight I’ll write up my experiences at the convention. I’m gonna tell you about 2 remarkable PWDs I met…a man who’s possibly one of the handsomest guys I’ve met in a long while and an amazing lady who’s a polio survivor just like me…I fell in love instantly...

7 things about me...

2011-09-03T19:22:00.008+01:00

Hello people…hope everyone is doing great and enjoying the weekend. Well, after the emotional upheaval of the other day (akshuali it was yesterday), I’ve decided to ‘ease tension’ by blogging about less serious sturvs, I hate being too intense, not my style at all, so today’s blog session has nothing to do with disability.

Since my foray into BLOGSVILLE…I’ve been learning loads of new stuff about blogging and one interesting thing I’ve found is there’s something known as THE STYLISH & VERSATILE BLOGGER AWARDS. This award is given by seasoned bloggers to fellow bloggers whom they like or admire for their blogging style. According to the rules of the award, once its given to you, you’re supposed to say 7 things about yourself then give the award to 15 other bloggers. I’ve read a lot of acceptance speeches that cracked me up so bad…lol. Anyways being a newbie n all I’m obviously not eligible to receive or even give the award, but I liked the aspect of saying 7 things so that’s what am gonna do today. I also aren’t awarding 15 bloggers.

So, here are 7 ~~things~~ sturvs about myself, some of which are obvious and some of which no one knows…so y’all ougta be glad that I’m sharing some deep dark secrets with y’all.

Sturv 1: I absolutely love music. I’d probably be the unhappiest woman around if I didn’t have music. Everytime, all the time, when I’m sad, depressed, I just play music and it uplifts my soul almost instantly.

one good thing about music..when it hits you feel no pain...so hit me with music..

Sturv 2: I once toyed with the idea of suicide. In childhood and adulthood I faced a lot of challenges (gist for another day) which I had to overcome sometimes alone but most times with the support of my mom. So when she died I underwent a downward spiral emotionally and one night, I woke up crying and feeling lost, got a rope, tied it to the ceiling fan, got up on a stool, slipped the noose round my neck and….JUMPED! hahahahaha…just kidding…I no get that kind liver. What I actually did was to take 4 tablets of valium 5 instead of the usual 1 or 2, fortunately it didn’t kill me (I think I knew it wouldn’t) I just slept a lot. When I woke I was really worried at my suicidal thoughts and turned to my Bible…in the weeks after mom’s passing I was really unstable emotionally and psychologically but the Bible restored my sanity and stability.

every hangman's noose in my life be consumed by fayaaaaaaaaaaa!!

The Bible helped me heal..

Sturv 3: I absolutely love gisting, some call it gossiping but na dem sabi, lol. It doesn’t help that I recently reconnected with 2 friends of mine who love gisting even more than me. The other day we started gisting on the phone from 11p.m till 4a.m. just catching up on old times and you know… discussing many sturvs! To further buttress the fact that its gisting I love and not gossiping, I’m gonna tell a story, in this story I will attempt to illustrate the difference between gist and gossip.

Jamila’s husband buys her a brand new red colored SUV, she drives to the shopping mall in it, then stops over at Irene’s to say hello, stays and chats a bit then drives to pick her kids from school, and finally goes home. The End.

Illustration a: As soon as Jamila leaves, Irene calls Yinka and says hmmmm…Yinka guess who just left here now, na Jamila o! come and see the new car her hubby bought for her, its sooo beautiful, am happy for her, and its red, you know she always loved red, how thoughtful of her husband, kai! bla bla, bla…in fact she’s gonna come pick me and you tomorrow lets all hang out a bit. On the other end of the phone, Yinka makes some ooohing and aaahing generally pleasurable sounds, they agree on what to wear, time, and the call ends. That is GISTING!

Yinka on the left, Irene on the right...

Illustration b: As soon as Jamila leaves, Irene calls Yinka and says hmmmm…Yinka wonders shall never end! guess who just left here now, na Jamila o! she came in one red SUV claiming that its her husband that bought it meanwhile I saw that same car with Alhaji Umar 2 weeks ago, you don see dat tin wey I dey tell you? She’s dating him jare!! can u imagine? She’s just driving round the whole town doing shakara! She went to XYZ shopping mall, so that Mrs. A will see the car then she went to pick her kids from school at the exact time that Madam V picks her own kids! Mschewwwww…nonsense, rubbish! Does she think she’s better than us? Afterall your husband bought you a Mercedes 3 years ago! And she had the guts to say she’s coming to pick us to hang out tomorrow, if she near my house I go set fire to that car…on the other end of the phone, Yinka uses some equally explosive expletives, they both hiss and roll their eyes and the call ends….and that my friends is GOSSIPING!

Need I tell y’all that what me and my friends engage in is ~~Illustration b~~, sorry illustration a! hehehe

Sturv 4: I exude a lot of inner strength but the fact is that I’m not always strong…I have many moments when my strength fails me, moments of unsurety (is that correct?), loneliness, etc. but I act strong cos everyone calls me a STRONG WOMAN and I don’t wanna disappoint them

A strong woman

Sturv 5: My love for horror movies is legendary…my idea of a great weekend is, late at nite say 11ish midniteish, a good horror movie (lots of blood and gory slaughtering), all lights switched off, popcorn and a strong guy with broad shoulders. I love horror movies but I’ve never been able to look when the dumb blonde is getting butchered with a chainsaw or the automatic garage door is chopping off someone’s head, or the part I love most…when the dead guy comes back to life…the 3^rd time! Bwhahahahahaha (my evil laugh)

dont ever be home alone on christmas nite..

look behind you!!

Sturv 6: I may not seem like it but I have no patience for mediocrity, sloppiness and worst of all, bad grammar especially from ‘educated’ people and public figures. It really irks me when I hear people excuse horrible grammar in the name of ‘English is not our mother abi father tongue’ eeeiiissshhh! What’s that??? English is recognized as our national language! If you cant speak it, stick to pidgin English or your local dialect.

I should Abortion? showing on our airwaves (SMH)

Sturv 7: This Duchess is an unrepentant incurable romantic *shy smile*…I just lluuurrvvss romance and romantic stuff. e.g. in Nigeria giving your girl flowers is considered corny, silly and ‘un-Nigerian’ but I love love love it! but no be flower I go chop sha...

awwwww...*sigh*

Sturv 8: I know I’m supposed to stop at 7 but what are rules if they cant be broken? I have a number 8 jor. I am very playful yet underneath the playful unserious exterior lies a cerebral (if I may say so myself) and serious-minded beautiful girl, the playful side is the more dominant character though because I purposely choose to be happy and exude happiness but I get brain small sha… Some people know both sides of me, others know just the one side and think the other side doesn’t exist...big mistake!

beauty and brains...darriz me! dont hate! hehehe

Can’t resist the temptation to add a very very very imporrant Sturv 9: I love FOOD…cooking it, baking it, grilling it, frying it, steaming it, roasting it, worrevaing it and EATING it!

glorious food

chocolatey heaven

my workshop

there...so that’s 9 ~~things~~ sturvs you now know about me….lol...back to serious stuff in my next post..

My relationship status: Single...not Hopeful

2011-09-02T11:48:00.002+01:00

Hi everyone, today’s post is actually a rant…I was gonna blog about something else but an incident happened this morning that really upset me and I just wanna rant..so I’ve archived the initial post for another day…maybe tomorrow or the day after. As I type this, my anger has subsided and I’m in a mellow state of mind but it’s a rant nonetheless.

What happened this morning: While commenting on a post in one of the social media, someone called me ‘hopeful’ in referring to my relationship status. He gave other options of single, married, widowed, single mom, etc…then specifically called me ‘hopeful’. My analytical side kicked in instantly, analyzed the statement then typed up a scathing response, which I eventually toned down on a second read. To my mind he feels I don't fall into the category of SINGLE obviously because I have a bad leg, so he created a new category for me called hopeful. I found it very rude, offensive and condescending...I don't care if he was joking (as they usually claim when they act thoughtlessly) that was a totally tactless and tasteless 'joke'.

I have been mulling over this...did I over react?? hell no! I am certain I did not, as a matter of fact I think I under-reacted. All my life I grew up feeling like I’m not good enough just because I had a weak leg and walk with a limp, I’ve been taunted and abused physically, sexually, emotionally and mentally from childhood because I had a bad leg..as I entered into the dating scene, I was always plagued with fears of not knowing if a guy loved me truly or wanted me just for my butt or my brains, or even to get money from me (not that am rich o) I’ve been through a lifetime of not knowing if I was loved as much as I was loving and giving. I’ve had guys make me feel like they’re doing me a favor being with me and girls actually telling me to my face (during a normal cat-fight) that they can leave their man with me and sleep easy because I’m not a threat since their man wouldn’t touch a ‘cripple’ even in their dreams…Oh! how tempted I was to prove them wrong but thank God mom raised me not to be vindictive. Many times I cried at night because I couldn’t understand how a guy would say to me, ‘I love you’ then turn around and go dating my friend right before my eyes. I have been in situations where I felt like I had to give sex and/or money that I didn’t have, just to make a guy stay with me and love me, needless to say I know better now. I don't need anybody to tell me who/what I am..I know that already...and I don't allow anyone or situation define me either...but those were hard times for me before I built self esteem and confidence and memories like those don't go away so easily...

All these could very easily have happened to any girl but the experience was made worse for me because of my ‘disability’. I had a tendency of attributing my love mishaps to it and it nearly turned me into a cynic, never believing in true love, it also made me stay away from guys who even had noble intentions…this has obviously played a huge role in my being single because I just haven’t met someone whose motives I’m 100% sure of and because I am looking for unconditional love.

Like every NORMAL human being, I get lonely a lot but I am not desperate enough to enter into a relationship where I am the only one struggling to make it work because some guy thinks he’s doing me a favor by dating or offering me marriage. So maybe in a sense I am hopeful, but that is merely a state of mind, i'm hopeful I'll find a good, loving, faithful man, hopeful he'll love me the way I wanna be loved, hopeful God will bless us with long life and a great marriage, hopeful for many things...but my relationship status is SINGLE, not hopeful.

I see this a lot, people saying insensitive stuff to their fellow humans without a thought for their feelings. People have committed suicide because of harsh words or taunts from people around them. I believe this guy owes me an apology, but true to form, he didn't and probably never will...

I started this blog to educate people about disability. I will use any means necessary to send this message including sharing my innermost thoughts, feelings, desires, etc. Like Martin Luther King or Rosa Parks (yea, I’m hoping to attain icon status soon so don’t hate, lol) I may not live long enough to see the CHANGE in societal attitudes that I deeply desire but if this blog will make someone somewhere realize how powerful spoken/unspoken words are, how sensitive some circumstances are and how badly treated people with disabilities are, if I can make someone somewhere think twice before saying/doing hurtful stuff to anyone.. disabled or not..then I will keep writing and keep blogging and I urge you to keep reading…

As Dr Phil would say...Sometimes you just got to give yourself what you wish someone else would give you....

I leave you with this amazing song from an amazing icon of disability, Mr Pendergrass…I call him Teddy...I particularly chose the video where he’s in his wheelchair…enjoy..

What is my Disability???

2011-08-31T02:23:00.007+01:00

Its 2.20a.m Nigerian time and I’m nodding my head to the awesome tunes of Luther Vandross, Cyndi Lauper, Patti Labelle, and Frank Sinatra…yea you heard right…am an old school freak going way back into the Sinatrasque era, I’m sipping my 3rd cup of ORGANOGOLD gourmet latte while updating my blog. Just got some amazing blogging tips from a great friend who’s a seasoned blogger herself…so I've been up all night 'pimping' my blog...check out the new features...take the latest poll, listen to my kinda music, just generally enjoy what i enjoy on a daily basis...if you love old school music like me, then do a search for this song on YouTube and just sit, tap your foot, and nod your head...Me and Mrs. Jones...(we got a thing goin' on)...by Billy Paul...damn! its pretty old but its crazy mehn! every time I listen to it I get goosebumps!

Anyways I’m yawning already so this is gonna be a really quick one (yea right! I always say that then end up writing an epistle, hehehe!) I talk too much I know, na only God fit save me..now back to the issue at hand, the thing is I can’t believe I haven’t mentioned what my disability is so far on this blog. Damn! Talk about old age…I totally forgot! Well thanks to 2 of my commentators abi na commenters (Elcy and Olori) who reminded me abourrit I’m pleased to announce that yours truly is a POLIO SURVIVOR. I suffered polio at age 3 and struggled with it through a couple of successful and unsuccessful surgeries and here I am today, still standing strong in spirit, though not so strong physically (a feather could lift me off my feet) but don’t be deceived, am physically strong in some other sturvs o *wink* (ok, hope y'all recognize that 'sturvs' is a joke...when I say it I'm akshuali mimicking our youthful youth of today who murder grammar both with spellings and pronunciations)

By way of educating y’all (which is the main purpose of this blog) here’s a simple definition of polio. Poliomyelitis is a communicable infectious disease caused by the polio virus of the genus Enterovirus. It causes inflammation of motor neurons of the spinal cord and brainstem, leading to paralysis, muscular atrophy, and often disability and deformity. It is also called polio. Childhood vaccinations are given to prevent infection.

Note to the ignorant: For those who use the words ‘disabled’ and ‘deformed’ interchangeably, listen up!... they are NOT the same! So the next MUMU that refers to me as a deformed woman will have my palm imprinted permanently on their ignorant faces! That's not to say that persons with deformities deserve to be addressed in a rude manner either...its just absolutely important that people educate themselves on appropriate ways of addressing people to ensure stigma reduction.

My 'disability': To be honest, I was reliably informed that I was vaccinated against polio so even I am baffled as to how I gorrit, well e don happen, e don happen wetin pesin go do? My parents were educated, my mom was a nurse, all my brothers and sisters were vaccinated so how come the brightest, beautifulest, charmingest and of course sexiest one is the one that got polio?? I sense some winshry but no wahala sha. God dey!

Anyway, so polio affected my left membrum inferios leading to weakness in the femur, tibia, patella and fibula…the gluteal region also is affected. Oh dear, pardon me pls.. I forgot not everyone is as prolific as I am at using big words…lol! In simple English, the polio affected my left leg and resulted in little or no muscular control. I hope I have succeeded in confusing y’all.

Additional information: Obviously every disability has its attendant complications, in my own case, little or no muscular control meant less movement which led to sedentary lifestyle and which led to weight gain bordering on morbid obesity (I imagine people taking another look at my profile photo, hehehe...forget the seemingly slim facial shots, it spreads out as you go lower, lol) culminating in impaired mobility. Due to this mobility impairment, I have used mobility aids ranging from wheelchair to a cane most of my childhood and adult life (gist for another day).

Nevertheless in spite of everything, i have a sound mind and excellent spirit which even some 'able-bodied' persons can only dream about. So in essence...when I am asked 'what is your disability?' my polio-related response tells you why I walk with a limp, but the truth of the matter is that I am not disabled...I am 'diffferently-abled' lets face it...some of the stuff I can do, y'all can't do it...hehehe...

There..that was short and simple abi?? Now I’m off to bed abeg…when I no be bat abi vampire!

On a very serious note, thanks to all of you for reading me, giving me feedback and even telling pple about this blog…I have some serious gist for y’all in my next update (I don’t even know when that will be) but stay tuned sha..

Ciao…

Update...

2011-08-27T04:08:00.009+01:00

Hi everyone, it’s been a rather hectic week since I launched the blog..been here and there - doing this and that…so tonight I find time to update my blog. One scary thing is the UN Building Bomb Blast that happened earlier today, meehn! that shit was scary! I was at the UN House at 11a.m. the previous day, and I was supposed to go back next day (Friday) to pick up a document, but my colleague at the UN called me later in the evening to say because its half day at the UN on Fridays the document wouldn't be ready because the person who would sign it was out-of-office...bla bla bla so it would be better if I came in for it on Monday, I got upset and kept raving and ranting, now in retrospect, I realize that, that delay may very well have saved my life. Wow! Thank God for His mercies. I lost friends and colleagues in that tragic incident though; I don’t understand why it happened I can only pray to God to grant the souls of all the departed peaceful rest, and full and quick recovery for the injured, Amen.

Like I said on facebook, men and women who work in the UN are humanitarian and chivalrous, their work brings succor and hope to the needy, and their lives didn’t need to end in such a senseless manner. They are heroes, nothing less. This beautiful song by Sarah McLaughlin and Josh Groban (in the arms of an angel) is dedicated to all our fallen heroes in the UN Building Bomb Blast…it was indeed a BLACK FRIDAY…

click here: http://www.youtube.com/watch?v=zZHrbjhwKik

One good thing though is that I’m feeling really good about this blog, I’ve had a lot of positive feedback so I’m encouraged to keep going…Not gonna write much today…just wanna share stuff that happened over the past few days that absolutely turned the waterworks on in me…2 separate incidences..

I have this facebook friend, let’s call her Eka, she lives in Germany, we’re really good friends, always supporting each other and advising each other and just generally being there for each other and because I don’t normally announce it on FB (gist for another day), she had no way of knowing that I have a disability.

So, I do this note about the disability bill and I tag her on it and for the first time she gets to know that her friend Duchess Irina is a PWD. So she calls me up almost immediately and asks me why I kept it from her, I explain to her that I didn't 'keep it from her', it just never came up in any of our conversations and I just didn’t see the need to bring it up as a separate discussion, because disability doesn’t and shouldn't define me, one shouldn’t have to introduce oneself as ‘hi, I’m Irene I have a disability’..she asks me what kind of disability I have and I explain…suddenly she breaks down and starts crying, apparently her 13 year old daughter has a physical disability too where one leg is considerably smaller and shorter than the other, she has broken the leg twice, so it is a good 2 sizes smaller in shoes and 5 inches shorter in length. Eka shared with me how as a mom, it tears her apart inside seeing her daughter wear shoes where one shoe leg fits snugly while the other leg has to be dragged along cos if she lifts the foot the shoe would fall off. This of course affects her movement and attracts taunts from other kids and made the little girl more conscious of her disability than necessary. And so my friend Eka resorted to swapping shoe sizes in the stores when she goes shopping cos she couldn’t bear to see her daughter suffer so much, i.e. when she buys a size 7 pair of shoes for instance, she would swap the right leg with a size 5 of similar shoes giving her a pair of shoes with sizes 5 and 7 and hope the checkout cashier doesn’t notice.

By the time Eka finished this story, I was also in tears cos memories come rushing back of how my late mom (God rest her sweet soul) would have done the exact same thing just to make me feel comfortable and ‘normal’.

The 2nd incident happened a few weeks ago with my neighbor’s 6 year-old who is also a polio survivor, her daddy called me to help him convince her mom to let the kid go to school because she’s shielding her too much. Apparently the kid was being taunted in school and just the previous day at a children’s party she was dancing with the other kids and one of the bullies started mimicking her movements, she ignored him and that infuriated him so he pushed her down and called her cripple. Based on this she said she wouldn’t go to school anymore, while her mom was in support her dad was more matter-of-fact and wanted to take her back to school and lodge a complaint with the school authorities. The mom’s obstinate behavior was the reason he called me to intervene aside from the fact that I’m one of ‘his daughter’s kind’.

Well, I asked daddy to give the girl a break for that day and I took her home with me, bought her ice cream, played video games with her, she spent the entire day with me and kept asking all kinds of questions which made me cry because once more she reminded me of me. The most touching question she asked is, why doesn’t my daddy love me? Apparently she felt that by wanting to take her back to school (and possible taunting) her daddy didn’t love her…while trying hard to fight back my own tears, I explained to her how much both parents love her and the reason behind their different reactions/decisions. Suffice to say she went back to school and is doing her best to cope with bullies. This made me decide to dedicate a couple of blogging moments to discussing how children with disability can cope and the role of their family members in easing the experience.

For today however, I’m gonna end this by dropping a list of acceptable terminology for addressing persons with disabilities. I was truly shocked to learn that in this day and age people still use words like ‘cripple’ to refer to a person with a mobility impairment, much less used by a child to refer to a child. What are parents and schools teaching their wards these days? *bewildered and SMH*

Happy reading...see you around...

Appropriate Terminology...

When it comes to the issue of how to address persons with disabilities, we must realize that words hurt. Words carry power. A person can use a terrible word in a context that still shows that they respect the person and conversely use a first rate word and show no respect - so sometimes context is important.

Some would also argue that it depends on the preference of the Person with a Disability (PWD) on what they want to be called. I also go by the rule of letting the PWD take the lead in what they want to be called, however it is important to always use "people first" language - and this is NOT about PC, it is about using language to empower and dignify a human being. Politically correct means most often it has been accepted by people with disabilities themselves. Language is fluid and malleable - it changes.

The most politically correct and widely used term is 'disabled'. Most of the alternatives are considered inappropriate. There are some words, three especially, that have been rejected nearly universally - retardation and any derivative like retard, retarded; spastic and spaz; Cripple and crip. Just like the N word is used between peers - spaz and crip are used between close friends. However the word ‘retard’ is not used by anyone to describe themselves.

Below are examples:

1. Use "person with a disability" or "people with disabilities" person who uses a wheelchair (who is in a wheelchair) and NOT a "wheelchair person".

2. Use ‘’Person with developmental disability" (or intellectual disability) and NOT "mentally retarded".

3. A blind person is either blind or visually impaired.

4. A D/deaf person is either deaf or hard of hearing.

5. A Deaf and blind person usually prefers the spelling Deaf-blind.

6. A physically disabled person is physically disabled. In this context, it would be appropriate to use mobility impaired to signify the person's limitations.

7. A wheelchair user is not wheelchair bound or confined to a wheelchair. You can either say that the person is a wheelchair user or you can identify them by their specific disability, e.g. Mr X has paraplegia.

8. If a person is disabled due to chronic illness, ‘chronically ill’ is fine, or just disabled.

9. A person with a cognitive disability is just that- cognitively disabled.

10. A person with Autism is a person with Autism.

The word ‘handicapped’ is offensive to almost everyone as it implies that one is unable to do most things and this is not true of PWDs.

The idea of being ‘challenged’ emerged about 10 years ago and is condescending. People with disabilities are not challenged - you are challenged to play chess and one of you wins - disabilities you live with - you struggle - you face them head on - and there is no winning - there is only learning to accept and move onward.

People who have cognitive disabilities have embraced the term self-advocates. This refers to the fact that they want to make their own decisions - they want others to stop making them for them.

Some people who are autistic, blind, deaf, and a few other disabilities embrace their disability as a minority identity. They are not dismissing the fact that they are disabled - but they are dismissing it as a negative experience. I am autistic. I am deaf. I am blind. I am disabled.

The most important thing is to make sure that one is sensitive in communicating with the disabled, when in doubt, just ask poilitely, ‘how would you like to be addressed?’

Useful links:

Disability Language Style Guide: http://www.ncdj.org/styleguide.php

Disability Etiquette: http://www.nawcwd.navy.mil/hrd//disabili…

Mr President..Sign the Disability Bill NOW..

2011-08-23T01:09:00.009+01:00

Published in THISDAY Newspaper

Saturday, August 20, 2011

The persistent rainfall worsens the typical hustle and bustle of the Monday morning commuter rush. Along comes Monsuru crawling as usual on his two hands, trying to avoid the puddles, his palms protected by a pair of old worn slippers; he is a polio survivor who has lost the use of his lower limbs and as such relies on his hands to move around.

He is a cobbler and has to get to his place of work very early in order not to miss seeing his customers who typically drop off shoes for him to fix during their own commute to work which they will pick up at the end of the work day. However, today, Monsuru is unable to get to his shop on time because it is an uphill task climbing into the bus, which is the only affordable means of transport for someone on his income level. He has to deal with a lot of pushing and shoving from other passengers all struggling to get a seat on the bus, especially on a wet morning. When he eventually manages to climb into a bus, he is faced with the glaring stigma of people avoiding the seat beside his and dusting themselves off because his body made contact with theirs.

This is the scenario faced by Monsuru and hundreds of other people with various forms of disabilities in their daily lives, which makes me wonder, perhaps if the DISABILITY Bill had been signed into law by Mr. President, then Persons with Disabilities (PWDs) wouldn’t have to put up with such degrading and denigrating circumstances because the Bill among other things, specifically makes provisions for safe, dignifying and affordable transportation for PWDs which would definitely cater for the needs of persons like Monsuru.

In recent discussions with several people, I have discovered that not many regular citizens know or care about the Disability Bill, which may partly explain why it does not feature in day to day discussions or have many people clamoring for its passage like other Bills.

The Nigeria Disability Bill prescribes an Act to ensure the full integration of persons with disabilities into the society and to establish a National Commission for Persons with Disabilities and vest it with the responsibilities for their education, healthcare and the protection of their social, economic, civil and political rights, 2009 (HB 37 and 46).

The Bill seeks to address key issues around discrimination, safety, access to facilities, education, health, and standard of living as it affects PWDs. Some of the specific provisions of the Bill include the following:

No person with disability shall be discriminated against on the ground of his or her disability by any person or institution in any manner or circumstance whatsoever.
No public building shall be constructed without necessary accessibility aids such as lifts (where necessary), ramps to make them accessible to and usable by persons with disabilities including those on wheelchairs and the visually impaired;
Transport service providers shall make provisions for lifts, ramps and other accessibility aids to enhance the accessibility of their vehicles, parks and bus-stops to persons with disabilities including those on wheelchairs. Before a person with disability boards or alights from a vehicle, the driver shall ensure that the vehicle completely pulls up.
Government shall take all appropriate measures to ensure the full developmentt advancement and empowerment of women and girls with disabilities for the purpose of guaranteeing them the exercise and enjoyment of all the rights and privileges p+ovided for in this Bill.
In all situations of risk, including situations of violence, emergencies and the occurrence of natural disasters government shall take all necessary steps to ensure the safety and protection of persons with disabilities taking cognizance of their peculiar vulnerability.

These and many more important and strategic clauses make up the disability Bill which further prescribes sanctions and punishment for contravention of its provisions.

If signed into law, such a Bill has the power to turn around the lives of PWDs in Nigeria from one of drudgery to one of hope, opportunities and fulfillment. One then wonders why there has been no political will since 2007 to turn the Bill into an Act. This gives the impression that the lives of PWD are of no value despite the fact that many of them have brought and continue to bring glory to this country through the Paralympics games, in the civil service, development sector and even in the entertainment industry. Many PWDs have risen to notable heights including being recipients of the prestigious Ford Foundation and other international fellowships and some have even been given National Honors. The President of the Joint National Association of Persons with Disabilities in Nigeria is a notable, accomplished blind lawyer. Looking beyond our shores, famous for her many achievements in life despite being both deaf and blind, Helen Keller has been a role model of achievement in the face of adversity.

The question then is this, why would a Bill aimed at improving the lives of a vulnerable yet progressive group of Nigerians be treated with levity? It is pertinent to note here that in 2006, Ghana drafted, passed and signed its disability act into law in record time spanning a total of 13 months; The Uganda Disability Act which has been operational for almost a decade, has seen the standard of living of PWDs in that country improve dramatically, among other key changes, more PWDs are found holding key public offices and their access to facilities has improved tremendously. Conversely, this year marks 12 years since the first agitations for a disability act started in Nigeria, yet we still don’t have one. Personally I expected Mr. President to have given a speedy assent to the Bill considering his background of deprivation which ought to come with a realization of the suffering of the masses, more so the disabled masses. He didn't have shoes while growing up, what about those who dont have legs?

In societies the world over, a framework within which disability could be viewed is generally divided into three main models – the moral, medical and social models. The moral and medical models of disability are grounded in the perspective that “disability resides in the individual and carries with it a degree of stigma or pathology” In contrast, the social model places the locus of disability in the environment that fails to appropriately accommodate and include people with disabilities (Olkin, 2002).

There is no gainsaying the fact that the country that improves the welfare of the disabled will ultimately improve itself and its economy. To many, this may sound like a contradiction, but the truth is that it isn’t. Government’s ‛ostrich’ or ‛do-nothing’ approach towards pressing issues in the country will not be accepted by the 19 million persons with disabilities in Nigeria. This administration must institute and institutionalize pro-active legislation geared at helping PWDs improve their circumstances. Only when government takes a pro-active stand will PWDs regain rights which they have lost simply by being or becoming disabled.

Permit me to appeal to the moral man/woman in all of us…if you have ever witnessed a blind man bump into a wall or parked car, witnessed a woman in a wheelchair refused entrance into the bank because the security doors are too small for her wheelchair or while attending a function has to be carried up the stairs alongside her wheelchair in an ungainly manner, if you have seen the exasperation of a deaf girl at an event where she would love to fully comprehend the proceedings or if you have just held the hand and looked into the eyes of a mentally impaired young boy …if you have ever witnessed any of these, but most of all if you are aware that you and your loved ones are not impregnable and can become disabled at any point in time due to any act, now is the time to rise up and join the struggle, now is the time to lend a voice to this cause…now is the time for you to stand and say with me, ‘Mr. President, give persons with disabilities an enhanced meaningful life, sign the disability Bill into law NOW’! This is more than a moral obligation; it is a social, economic and political compulsion.

As William Robb said… “It is better to be farsighted than myopic when it comes to the disabled”

This is my message….this is my passion… my name is Irene, I am a woman living with a disability…I am an advocate.

Welcome...

2011-08-22T22:47:00.011+01:00

Hi there,

Welcome to the maiden edition of my blog Duchess discusses Disability. I hope you enjoy reading...

First, let’s take care of some housekeeping issues in the form of a few questions which I’m sure people will want answers to when they see this blog.

1. What is it about? It’s a blog where I’m going to be describing my experience as a woman with a disability; especially living in a ‘disability-unfriendly’ country like Nigeria. I’m going to be sharing deep stuff, silly stuff, funny stuff, ‘how-to’ guides, statistics, real life experience, legal/policy issues, etc. All mostly my take on the disability environment in the country, and comparing it to the situation in other countries of the world, so in essence this is going to be much like a self-styled ‘Diary of a passionate woman living with a disability’, please note that ‘passionate’ here refers to zeal/enthusiasm not the other kind of ‘passionate’, lol… and those of you who know me well can be sure that this blog will be incomplete without a healthy dose of HUMOR and SARCASM! I'm a music lover so I'll also be dropping some good (especially old school) jams here a lot!

2. Blog Name: Everyone calls me Duchess so when I decided to start this blog I thought to myself, hey! why not make the Duchess-nickname into the Duchess-brand name, so here we are with a blog called Duchess Discusses Disability. However for the avoidance of doubt as to who I am, my real name(s) is/are (whichever suits you) Irene Ojiugo Patrick-Ogbogu.

3. Vocabulary: Thirdly, don’t laugh, snigger or whatever when I use words like wanna, gonna , worreva, etc,… it’s the American in me trying to come out but I’ll try to keep her in check. I’m also prone to using exclamations like Kai! Chei! Eh! Damn! So bear that in mind too… Don’t fret! I also speak very good English and will do so when the need arises. I also use the word HOT to describe persons I think are really good-looking… That’s about it for ‘vocabs to expect’.

4. Another thing is the WHY behind this blog. Well I must say that in Nigeria, the knowledge of needs, challenges and potentials of PWDs is really low even among the educated elite. By the way, wherever you see PWD it means Person with Disability, and WWD means woman with disability. As I was saying, I feel challenged seeing PWDs live unfulfilling lives and helplessly grappling with enormous challenges simply because we have an insensitive government and ignorant society. I have spent the last 17 years of my life in the non-profit sector advocating for human rights and better health and social conditions for vulnerable and marginalized groups. 2 years ago, I made the decision to use my knowledge, skills and experience as an advocate to bring better conditions to MY CONSTITUENCY…PERSONS WITH DISABILITIES. Through this blog, I will keep you all updated on my personal and professional endeavors and successes/challenges, it is my hope that by reading this blog, you will become a passionate ADVOCATE too, not because you ‘pity’ the PWDs but because it is the RIGHT thing to do and because of that one basic fact of life which I always tell everyone..it takes a split second for an able bodied person to become a person with a disability!

A quote I particularly love sharing with people is this…the moment we stop fighting for each other, that’s the moment we lose our humanity.

5. I know there’s one more housekeeping thing but I can’t remember now, damn!

OK with that out of the way I have decided to start my maiden edition by educating the public on MYTHS AND MISCONCEPTIONS ASSOCIATED WITH DISABILITY. I chose this because, for me its important that people understand certain basic things about disability which will equip them with the right mindset for a re-orientation and position them for action. In a world where everybody is fighting some kind of stereotype, people with disabilities are no exception. The difference is that barriers PWDs face begin with people's attitudes — attitudes often rooted in misinformation and misunderstandings about what it's like to live with a disability. So here goes… after each myth statement, the fact of the matter is stated. Happy reading…

6. Oh yea… now I remember the last housekeeping issue: your comments are very welcome, in fact I’m begging for them, but… PLS PLS PLS no insults or stupidity…I don’t react well to those…try your best to be respectful and sensitive to everyone you interact with here...

DISABILITY MYTHS AND CORRESPONDING FACTS

Myth 1: Disability is a devastating personal tragedy.

Fact: The lives of disabled people are not tragic. What often disables people is the attitudes they encounter and the environment in which they live and work.

Myth 2: All persons who use wheelchairs are chronically ill or sickly.

Fact: The association between wheelchair use and illness may have evolved through hospitals using wheelchairs to transport sick people. A person may use a wheelchair for a variety of reasons, none of which may have anything to do with lingering illness.

Myth 3: Wheelchair use is confining; people who use wheelchairs are "wheelchair-bound."

Fact: A wheelchair, like a bicycle or an automobile, is a personal assistive device that enables someone to get around.

Myth 4: All persons with hearing disabilities can read lips.

Fact: Lip-reading skills vary among people who use them and are never entirely reliable. For clear and efficient communication many deaf people will need services such as sign language interpreters, lip readers, lip speakers and speech to text.

Myth 5: People who are blind acquire a "sixth sense."

Fact: Although most people who are blind develop their remaining senses more fully, they do not have a "sixth sense."

Myth 6: People with disabilities are more comfortable with "their own kind."

Fact: In the past, grouping people with disabilities in separate schools and institutions reinforced this misconception. Today, many people with disabilities take advantage of new opportunities to join mainstream society.

Myth 7: Non-disabled people are obligated to "take care of" people with disabilities.

Fact: Anyone may offer assistance, but most people with disabilities prefer to be responsible for themselves.

Myth 8: Curious children should never ask people about their disabilities.

Fact: Many children have a natural, uninhibited curiosity and may ask questions that some adults consider embarrassing. But scolding curious children may make them think having a disability is "wrong" or "bad." Most people with disabilities won't mind answering a child's question.

Myth 9: The lives of people with disabilities are totally different than the lives of people without disabilities.

Fact: People with disabilities go to school, get married, work, have families, do laundry, grocery shop, laugh, cry, pay taxes, get angry, have prejudices, vote, plan and dream like everyone else.

Myth 10: It is all right for people without disabilities to park in accessible parking spaces, if only for a few minutes.

Fact: Because accessible parking spaces are designed and situated to meet the needs of people who have disabilities, these spaces should only be used by people who need them.

Myth 11: Most people with disabilities cannot have sexual relationships.

Fact: Anyone can have a sexual relationship by adapting the sexual activity. People with disabilities can have children naturally or through adoption. People with disabilities, like other people, are sexual beings.

Myth 12: People with disabilities always need help.

Fact: Many people with disabilities are independent and capable of giving help. If you would like to help someone with a disability, ask if he or she needs it before you act.

Myth 13: There are disabled people who are 'uneducable'.

Fact: Disabled people reflect the same range of academic ability as non-disabled people, with some achieving high qualifications and undertaking high level jobs.

Myth 14: There is nothing one person can do to help eliminate the barriers confronting people with disabilities.

Fact: Everyone can contribute to change. You can help remove barriers by:

· Understanding the need for accessible parking and leaving it for those who need it

· Encouraging participation of people with disabilities in community activities by using accessible meeting and event sites

· Understanding children's curiosity about disabilities and people who have them

· Advocating a barrier-free environment

· Speaking up when negative words or phrases are used about disability

· Writing producers and editors a note of support when they portray someone with a disability as a "regular person" in the media

· Accepting people with disabilities as individuals capable of the same needs and feelings as yourself, and hiring qualified disabled persons whenever possible