Ask A Wheeler - Disability Q&A and more

Questions: Where do they come from?

2012-08-01T17:44:00.002-07:00

SCI-BC from Vancouver, British Columbia asks:

Do different groups of people ask you different types of questions in public?

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As a matter of fact, they do.

On the surface this sounds like a simple question with a simple and obvious answer. I find the answer to be a lot more complex than people may realize. I'm going to divide the answer into several distinct groups that I notice, and elaborate on each of them.

1. People who are elderly.

Elderly people make up the most interesting group. While generally they come from the same one or two generations, the questions they ask also come from their own personal background as well as the people they know.

Some of them are simply not used to the idea of people in wheelchairs being able to live active lives, and their questions and observations show that. Comments like "It's so nice to see you out" indicate that they do not expect to see you participating in society, period.

There is also another type of person in this group that I find extremely interesting, and that is the group that is asking the questions for their own interest. Some of them may have mobility impairments already and are asking questions like "How accessible do you find Vancouver?" partly for their own interest (and they often do not hesitate to share their own concerns about getting around as their own medical condition progresses).

Some also ask for their friends for similar reasons; their friend may have a condition that will progress in the future, necessitating the use of a wheelchair or other mobility device.

I find that it is really two extremes: either it is someone who does not have concerns about his or her own mobility or someone who does.

2. People who are elderly AND in the same racial category as me.

I am a Asian Canadian. I get it. If you are one of the elderly people who did not grow up here, it is a bit intimidating to talk to people in a culture and country that you are not completely familiar with. I have lived and worked abroad before and understand this. It is always a comfort when someone speaks your language and come from a similar cultural background.

The types of questions that elderly Asians ask are slightly different. Instead of asking about accessibility, I find that the questions often revolve around family and group dynamics. They ask a lot about how things affect family members, or whether they help if something is inaccessible and so on. Their thoughts are less centered on the individual and more on the family or group, which is one of the more well-known cultural differences between Asia and the West.

Another type of question they might ask is related to numbers. For some reason, elderly Asians who have asked me questions often ask about how much things like my wheelchair cost, how much time I spent in rehab, how long it takes to do something and so on. I have no idea why this is but it has happened to me numerous times and I find it quite fascinating.

3. Friends of someone who is in a wheelchair

This group is not shy. Obviously it is partly because they are already familiar with many aspects of wheelchair users. Predictably, the questions I get from them are more comparative; for example, they may ask something about me or how I do something, and compare it to their friend.

Personally, I do not think this is fair since everyone's condition is different – someone else with the same spinal cord injury level and type as me may have completely different issues. To take an example from someone I know who is gay, it is like how one gay person who comes from the same background as another gay person may have different concerns, tastes and so on.

But what about those who never ask questions?

This is interesting to me: the people who never ask questions tend to be those under the age of thirty. Teenagers never ask me questions. Children never ask me questions (except for that one time at Tim Hortons). University students often do not ask me questions. I do not know if this is because of the "don't stare" mentality turning into a "don't acknowledge" mentality but they are usually the quietest. Go figure.

Post-script: These are only from my experiences and other people may have different viewpoints. Remember, I do not represent everybody and what happens to me may not happen to other people. It really depends.

Wheelchair users and exercise

2012-07-08T13:02:00.000-07:00

Magnus from Malmo, Sweden asks:

How do people in wheelchairs exercise?

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This sounds like a very simple question but the answer is probably more complicated than most people would expect.
The first major factor is whether the person usually uses a manual wheelchair or a power wheelchair. This is important because quite often (but not always), the person's ability level determines the type of wheelchair he/she uses. For example, if your spinal cord was damaged at the cervical (neck) area, you may have movement in the arms but perhaps impaired or little movement in the fingers or wrists – this person is more likely to use a power wheelchair to get around town than a manual one.

It is obvious why this makes a difference. Someone in a wheelchair that they have to push up a hill him/herself would get more exercise than someone who simply pushes a lever to do the same thing. That is why when I push myself up a hill, I have a 50% chance of someone mentioning something like, "You must have good cardio" or "You must have strong arms."

Does that mean people who use power wheelchairs cannot exercise? Of course not.

Notice how I said earlier that people with impaired hand/arm function may need a power wheelchair to "get around town." I said that on purpose because it is not the same as needing a power wheelchair to "get around." People with impaired hand/arm function may be able to use a manual wheelchair under certain situations that do not require racking up the miles, such as getting around the house or the neighborhood – or in sports.

Ah, sports. This is a topic that will be gaining momentum this summer as the Paralympic Games in London approach. Many able-bodied sports have been adapted over the years, providing an outlet for people with various disabilities to exercise. As the Paralympics show, some of them turn their exercise into actual athletic competitions.

There are also weight room exercises that wheelchair users can take advantage of. The recent TV series Push Girls shows several scenes of working out with weights. There are also adaptive weight rooms out there specially designed for wheelchair users.

These are also in addition to exercises that you might see in rehabilitation centers and therapy, which can give you quite the workout – many things that are taught in those places require a LOT of core strength (especially important if one does not have full use of his/her lower- to mid-body muscles).

Of course, this is all nice and everything but the hard truth sometimes is that it is not always affordable to take advantage of sports programs or exercise rooms. This is where the unfortunate stereotype of "using a wheelchair because you are fat" comes in.

If you cannot use all of your muscles vital for "normal" exercise (such as walking) and cannot afford exercise programs, it is much more likely that you will become overweight. When you become overweight, you may start having difficulties pushing your own chair (if you use a manual wheelchair). This may lead to shoulder injuries, which becomes a secondary obstacle to pushing your own chair and you may require a power wheelchair. When you use a power wheelchair, you're exercising even less and may get more overweight.

As you can see, it's a slippery slope and one that is difficult to escape from once it starts.

Another factor that may lead to that slippery slope may include prescription drugs, particularly steroids (which some people may need to get enough strength for some functions such as breathing). Steroids can make someone gain weight, which leads to the same situation. This is why I am not a fan of the stereotype of the "fat person using a wheelchair because he/she is fat" – often there is a reason for that and it would have nothing to do with one's eating habits.

As a manual wheelchair user, that is why I try to get as much exercise as possible, whether it be a casual stroll through the neighborhood or playing sports. I know some people with more limited hand/arm function who try to do the same if they can. Unfortunately there is still no simple solution that works for everyone but it is quite important to do what we can to stay in shape.

Helping people in wheelchairs

2012-06-03T00:49:00.000-07:00

Larry from Rowland Heights, California asks:

Where I work, there is a guy in a wheelchair. Every time I help him open the door, he looks annoyed with me. What am I doing wrong/incorrectly?

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This one is pretty simple. I am sure he is annoyed because you were helping him without asking.

People with disabilities do not want to be seen as "unable." Disability does not mean inability. For those with disabilities, there are certain things that they CAN do; when they can do something, they want to do it. By helping without asking, you are actually not allowing that person to do something that he can do on his own.

In addition, by helping him with something that he can do, you are also inadvertently highlighting his disability or drawing attention to it.

A lot of this is accidental most of the time. Many people are taught at a young age to help those who are considered "less fortunate," such as elderly people or those with disabilities. This is a type of "charity model" of thinking that people with disabilities are trying to do away with.

With that said, if the person is struggling, what do you do? Again, it is quite simple: ask the person if he needs assistance.

If the person says no, then respect his wishes. In fact, at physical rehabilitation centers, they teach their patients to be as independent as possible – this includes being able to do things on their own.

However, if he accepts your help, then open the door "correctly." The correct way is to open the door and stand behind it, instead of being in front of the door. The reason is because if you are in front of the door, you are blocking the doorway for the wheelchair (which can often be almost the same width as the door frame).

Asking if the person needs help is a general rule to keep in mind. For example, my friends had no idea what to do when they first went somewhere in public with me as a wheelchair user. I told them, "Don't help me unless I ask." That has worked beautifully so far and is a good general rule of thumb to follow.

Assumptions about disability

2012-04-28T17:30:00.002-07:00

This entry is part of Blogging Against Disablism Day.

Mitchell B. from Riverside, California asks:

What are the most common assumptions about disability made by able-bodied people?

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I love this question. For the purposes of this blog, I will focus mainly on physical disabilities since that is what I know best.

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Assumption #1: If you are in a wheelchair, you cannot walk.

Reality: While it is true that many people who use wheelchairs cannot walk, that is not always the case. Many wheelchair users, including myself, can walk certain distances. However, for one reason or another, it is not always practical to do so. For example, someone has cerebral palsy may be able to get around the house fine but it is possible that any distance beyond 100 feet may be too much to handle. Another possibility is that someone may fatigue easily from walking too much; remember that for many conditions, some muscles or nerves cannot be activated, thus it may require a lot more energy for someone to walk (because different muscles may be used – muscles that may not be optimal for walking).

It is easier to think of it this way. Imagine you have a very old grandparent who is slow at getting around but can do usual everyday things. If you were to have a family trip to Disneyland, where it would be crowded with lots of walking and standing, what would you do? Many people would choose to rent a wheelchair to make things easier and less tiring. It is the same idea for some people – the ability to walk is there but it may not be physically practical to do so.

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Assumption #2: All people in wheelchairs are paralyzed.

Reality: Of course, from the previous answer, this is not always the case. Some people may have cerebral palsy, hip conditions, fatigue conditions and so on.

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Assumption #3: Paralyzed people cannot walk or move their legs.

Reality: While this is true for many people, it is still a common misconception. If someone's spinal cord injury is "complete," then this is likely true. If someone has an "incomplete" injury, then many things can happen. People with incomplete injuries often have some degree of feeling or control over the muscles below the point of injury. Even people with cervical spinal cord injuries ("partial quadriplegia") can possibly regain the ability to walk.

There is also something called spasms, which are basically involuntary muscle movements. It can take place in the form of a sudden twitch, or vibrating muscles (so someone's legs may be "jigging" up and down rapidly).

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Assumption #4: People in wheelchairs cannot drive or have children.

Reality: Driving is possible for almost everyone nowadays thanks to new technologies. Cars can be driven without using legs if hand controls are installed (where one can control both the brakes and gas pedals using levers). Fertility is more complicated and depends on the person's condition; it is not unheard of for males to father children or even females with paralysis to give birth.

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Assumption #5: If you are paralyzed, you need around-the-clock care.

Reality: This is actually quite a common assumption. I cannot count the number of times when I am in public and people wonder who is "with me" (as in who is my "caretaker"). Once things are adapted, it is entirely possible for someone with paralysis to live independently. In fact, I know of several partial quadriplegics who do. I have done so as well. Sometimes extra help may be needed, but independent living is a possibility for many.

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Assumption #6: If you can't walk, your shoes will always stay clean.

Reality: Does a bicycle stay clean if you leave it in the shed? Of course not. Similarly, shoes do get dirty without being walked in, especially if they get out on a nearly daily basis. In addition, wheelchair users may need to transfer from one surface to another (such as from a wheelchair to a bed); this process can actually leave one's shoes quite banged up.

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Assumption #7: Using a wheelchair is easy.

Reality: Believe it or not, this is common. While using a wheelchair gets easier over time, it is not "easy." A slight slope to a walking person may be like a mountain to a wheelchair user. Sometimes a detour around a flight of stairs may be multiple times longer and harder (when there is actually a detour). A slightly bumpy or uneven surface may prevent a wheelchair user from getting from point A to B easily.

Another thing that many people do not think about is physical ability. An able-bodied person in a wheelchair is able to use more muscles than someone who has a disability. For example, someone who has paralysis from the stomach down may not have use of his/her abdominal muscles for pushing a wheelchair. Also, someone who has impairment in the arms or fingers may not be able to push a wheelchair with a full grip.

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Assumption #8: People with disabilities do not want to work.

Reality: This is almost the same as the idea that people with disabilities are "lazy." Many people with disabilities, including me, want to work. The biggest problem lies not in one's willingness or ability to work but rather in employers' attitudes.

I have come across many employers who assume that I will not be able to do the job due to my condition, even if the position itself does not involve a lot of physical activity; in fact, employers often will nearly TELL you what you can or cannot do rather than listening or seeing for themselves. I also know several friends who want to work but nobody will give them the chance to do so.

There is also a huge fear that to accommodate someone with a disability, the company would need to spend thousands of dollars to do so. This is often not the case; quite often, if a company cannot afford it, there are government programs in place to assist. Even more often, if someone needs very specialized equipment (such as special keyboards for computers), the person with the disability may already own the equipment!

There is an instant assumption of inability instead of ability. People with disabilities want to contribute to society like everyone else, but are often not "allowed" to do so.

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Assumption #9: People with disabilities need our help.

Reality: Sometimes they do. Sometimes they do not. If they need help, they will ask for it.

One of the most common things I come across is when I am unloading/loading my wheelchair from my car, someone will stop and ask if I need help doing so. When that happens, I always think, "Do you really think that I would get into my car and drive somewhere without a proper exit strategy in place for once I arrive at my destination?" In fact, it may be even MORE time-consuming for someone to help in this case, because that person may not know how to assemble/disassemble my wheelchair!

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Assumption #10: Physical disability is an indicator of mental disability.

Reality: This one sounds silly when spoken out loud, doesn't it? In fact, this is quite common and sometimes annoying. There is nothing worse than going to a place where someone treats you like a child simply because of your disability.

One of the things that I do is assume that someone's mental capacities are present unless it is made explicit that it is not the case. This is especially important for conditions like cerebral palsy; someone with this condition may not be able to speak, walk, control their saliva, etc. but may have their mental capacities completely intact.

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Assumption #11: All paralyzed people have skinny legs.

Reality: Many do have muscle atrophy, but not all do. Due to spasms and my own exercise programs, I do not have a lot of atrophy. I know many people who do not have much atrophy. On the other hand, there are some who have severe atrophy (to the point where if they were magically "healed" all of a sudden, they still would not be able to walk because their legs cannot support their own weight).

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Assumption #12: People with disabilities cannot make their own decisions.

Reality: This is another "silly when you hear it" one that happens often. One common thing that happens is when I am with a friend at a restaurant, the server will ask my friend what I would like, instead of asking me directly. Always address the person with the disability directly, even if he/she does not have the physical ability to respond. I did this once to a non-verbal child with autism, and his parents appreciated that I said "How are you?" directly to the child, treating him like everybody else.

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Assumption #13: If you're in a wheelchair, you must know everyone else in town who is in a wheelchair.

Reality: No, I don't know Sally with the blond hair and black wheelchair. I'm sure she's nice though.

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Assumption #14: All people in wheelchairs are good at wheelchair sports.

Reality: I wish this were the case. I could use some athletic ability. However, I really do want to see more people doing adaptive sports in order to stay healthy.

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Assumption #15: I will never make any of these assumptions.

Reality: Perhaps but chances are that you will. I certainly have. It's more important to learn from it for next time. Nobody is perfect.

Prolonged wheelchair sitting and how to combat the effects

2012-04-01T02:44:00.005-07:00

Recently there was an article in the Vancouver Province newspaper about a study revealing that how too much sitting is linked to shortened lives. Obviously for those who rely on wheelchairs for mobility, this is a concern. So on Twitter...

BFWriter from Vancouver, British Columbia asks:

If too much sitting is linked to shortened lifespans, then what can wheelchair users do about it?

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This is a very good question and it can vary from person to person. I have very good use of my upper body so most of my answers will be based on that. However, there are those who do not; I will try my best to address as much as I can.

When someone relies almost exclusively on a wheelchair for mobility, his/her body often undergo some changes, including (but not limited to):

reduced bone density (or osteoporosis)
reduced/atrophied muscles
skin breakdown (such as pressure sores, a.k.a. "bed sores")
spasticity/spasms
changes in blood pressure and blood flow
cardiovascular conditions
contractures and joint problems

Some of these are for spinal cord injuries or paralysis, but I want to focus on wheelchair use in general (regardless of the type of condition someone has).

One of the most common tools used to combat the complications of prolonged sitting is the standing frame. There are several types, but basically they look like this.

An example of a standing frame.

To use one, the person simply transfers from a wheelchair to the stander and perhaps get strapped in (if there are straps). Once properly positioned, there will be a hydraulic pump that raises the person up. This video demonstrates:

However, not all standing frames can move around like that one. Most of them remain stationary. They are not meant to be a mobility device, but rather a device used to force someone's body to stand if he/she is unable to stand independently.

What this does is increase weight-bearing. By doing so, it maintains bone density (the bones are being used), it forces some muscles to do something new (which helps prevent atrophy), it allows the body to be in a new position (which can help with spasticity) and can also force the heart to pump quicker (due to more work needed to keep blood flowing in an upright standing position).

Other benefits can include reducing pressure on parts of the body usually involved in sitting (reducing the incidence of pressure sores), preventing scoliosis (by forcing someone to stand up straight and not slouch), aiding in bladder and bowel control (for those with spinal cord injury or paralysis, by using gravity and "stretching out" the areas involved) and psychological improvement (no more being short and always looking UP to things/people).

While this is all good, some people may have problems with standing frames. I remember when I had to stand for the first time since acquiring my disability, I nearly passed out because I was unprepared for the sudden change in blood pressure. Some people may still have this problem years later; light-headedness and slight dizziness can occur, which may prevent some people from using a standing frame too often.

There are also wheelchairs that can elevate someone to a more upright position. Some wheelchairs can help someone stand up partially, and others can stand completely.

Wheelchair with partial elevation.

Wheelchair with complete elevation.

While they have some of the same benefits as standing frames, the obvious drawback to these wheelchairs is practicality. They weigh a lot more than the aluminum and titanium wheelchairs that are often used, which can result in an increase of shoulder muscle injuries, and they can be difficult to transport for wheelchair users who drive cars, especially cars without wheelchair lifts or ramps.

These are the equipment-related options that can be used. However, can something be done without needing to use expensive equipment? Certainly.

One of the best ways to combat the complications of sitting is to go to the pool. This can be in the form of pool therapy or a casual swim. Being in the water puts more pressure on bones and muscles to fight water resistance; simply having to breathe harder in the water is proof enough of that.

I find that even with limited movement and sensation in my lower body, I can still take advantage of the water for weight bearing. At the shallow end, the water has a peculiar ability to support my weight yet allow me to "stand" with some weight on my legs; it is almost 50% standing on my own and 50% supporting my weight. The water also puts pressure on my muscles; since I have some movement, that can be used to try to increase strength. This can actually prove to be a bigger benefit than using standing frames!

Another thing I do is stretching on a yoga mat. Stretching muscles is important because those mobility problems are prone to contractures (shortening of muscle due to lack of use, resulting in reduced joint mobility). In addition, I have some joint pain in places where I have sensation and I suspect that for places where I lack sensation, it might be the same story. In general, I can independently stretch my lower body relatively well; if I want to "go the extra mile," I would require some assistance, but those with good use of their upper bodies should be able to stretch well.

There is another option that is not as widely used as standing frames, standing wheelchairs, swimming or stretching. That is functional electrical stimulation (FES). Basically, it involves electrodes that are attached to muscles that are paralyzed and small electric currents are used to activate and perhaps reprogram those muscles.

I am not an expert on FES, nor do I use it. From what I can find out, it is not right for everyone (which may be why it was never suggested to me). It does not repair spinal cord damage but rather it attempts to recover specific muscular functions. From what I can tell, it does not directly address the issues on the list that I put together at the beginning of this post.

Also, from what I can find, if someone is unable to stand, FES is unlikely to change that; however, if someone is already able to stand, FES can help with how the muscles move. In other words, it does not necessarily help someone achieve the ability to stand if the person does not already have that ability.

In the occasional cases where it does help someone achieve walking ability, one still needs 6-8 times more energy than able-bodied people to walk with FES. It is not practical walking (it cannot be sustained for a long period of time) and hence the person will still likely spend the vast majority of his/her time in a wheelchair.

(I may be wrong about this; I'm simply going by what I can find through some research. Unfortunately the studies out there are not very unified.)

This has been a long and somewhat complex post. I am sure there are other things that wheelchair users do to help with standing or increasing the time spent outside the wheelchair; these are just a few of the ways to do it.

Accommodations

2012-03-22T06:53:00.002-07:00

I am sitting at Vancouver airport as I write this, filling out a questionnaire for a video that I will be helping out with for British Columbia's tourism and hospitality industry in nearby Victoria. One of the questions asked is a very good one.

Tourism British Columbia from Victoria, British Columbia asks:

What issues do you have when it comes to accommodations such as hotels?

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Perhaps one of the most finicky things about accommodations is that many people do not fully understand what "accessible" means. For some places, they assume that if a place has no stairs or steps, it automatically becomes accessible. Worse, some other places consider places with a few steps are still "accessible." Basically there is no standard understanding of what it means to make something accessible.

One of the things that many people with disabilities tend to suggest is to be as specific as possible about what you may require. There have been situations where someone would phone ahead and would be assured that a place is accessible but arrives to find out that it is anything but.

For example, I know someone who was told that the hotel room he wanted was recently renovated to become fully wheelchair accessible. However, it was on the second floor of a building without an elevator, obviously making any renovations useless.

A less obvious incident from another friend involves an "accessible" hotel that had two steps at the front entrance. She uses a power wheelchair, so there was no way for her to enter the hotel at all.

I have come across a less obvious example myself, where the room is on a floor without stairs or steps, but the room itself is too tight to maneuver if you are in a wheelchair, in addition to having an inaccessible bathroom. I did all I could to ensure that it was accessible but without physically being there, there was no way I could have predicted those problems, so sometimes being specific does not always work.

As a side note, one particular pet peeve (especially among fancier hotels) is the use of thick carpeting. Even with good upper body strength, thick carpeting can make navigating through rooms (that are otherwise accessible) similar to getting around in quicksand. Able-bodied people can simulate the effect by trying to roll a suitcase on the same carpeting – it simply does not work well. The best carpeting to use is thin hard carpeting often found at airports. The softer and thicker the carpeting, the worse it will be for wheelchair users.

My advice to professionals in the industry is to do a dry run in a wheelchair or other mobility device in the rooms before declaring it accessible. In addition, see if it is possible to access the room from the outside; there may be some modifications to the hotel's entrance that are needed. In addition, do not be afraid to seek out local disability groups and societies for help; here in Vancouver, there are several organizations who would gladly provide some people with disabilities to do a "test run" of your building. Also, when they have recommendations, listen and never dismiss them; some places tend to do this for accessibility assessments ("It's fine, it's good enough"). We would not recommend things unless we know they are necessary.

There are a lot of advancements that can be made in this field for sure and it all has to do with understanding how things look from our point of view, instead of simply following ADA regulations and other access guidelines without thinking.

What are we called, exactly?

2012-03-13T19:44:00.003-07:00

Tammy from Manchester, England asks:

If I see someone in a wheelchair/cane/etc., should I call him/her?

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The person's name always helps. But with that aside, that is a good question.

There have been many words used in the past to describe people with disabilities. Just like many other civil rights movements, the words have evolved over time according to the sensitivities and perceived appropriateness of each generation.

In the past, there have been words used such as "cripple," "lame," "spazz" and so on. These words, over time, have gone from being commonplace to offensive. Some argue that the word "handicap" should be discontinued as well (which I will talk about later).

It seems that here in North America, there is a trend towards person-first language. For those who do not know, person-first language basically puts the person first and impairment second. For example, instead of saying "disabled person," the preferred term is now "person with a disability." (Obviously those who came up with this never had to deal with the length limitations of Twitter!)

The reason for this is that there is a movement to get the general population to change their ways of thinking about disability. Throughout history, there has been the idea that disability is something bad that limits a person's ability to live a full life. After the technological and medical advances of the past several centuries, this is no longer true; many people with disabilities are able to live a full and fulfilling life.

However, despite the advances, social perception of disability has not changed accordingly. It is possible for a person in a wheelchair to be viewed as helpless or limited simply due to his disability – even if the person is actually a Paralympian who has won a gold medal. There are many assumptions that people have, and it is all centered on the idea of what someone "cannot" do.

Hence, if you use the word "disabled" as an adjective, you are effectively describing the person by putting his/her disability first and foremost as if it is the most important thing about him/her. People with disabilities often want to be known for who they are as people, not simply as "the wheelchair guy/girl."

But there is a catch. This is not a universal rule. In the United Kingdom, the term "disabled person" is still widely used. I am not British so I do not know if there are many negative connotations that come from that like in North America. My Twitter has many followers from that part of the world; I would love to pick their brains about this topic one day.

The word "handicap"/"handicapped" could also be the next term to be phased out. Some see the word "handicap" as being an equivalent for "disadvantage." There is also an unconfirmed rumor that since the word's origins come from the term "hand in cap," it also has a connotation that people with disabilities are historically known for being beggars on the streets. (Again, this is not something I have been able to confirm.) Either way, I would not be surprised if this word is abandoned soon; that is why instead of "handicap parking," I err to the side of caution and say "accessible parking" instead.

The words "gimp" and "cripple" (generally considered offensive words) are undergoing an interesting change as well. Like the N-word, they are currently being reclaimed by those with disabilities. Sometimes it is a sign of pride. I have also seen it as a sign of defiance in response to assumptions about disability. Examples of how those words are reclaimed can be found at GimpHacks (a blog belonging to someone I know), My Gimpy Life (an upcoming series starring the wonderful Teal Sherer) and CripCollege (a blog teaching tips and tricks for wheelchair users that existed until 2010).

Of course, this is only English. In some other languages, the negative connotations of disability are embedded into the word itself, such as:

German's "Behinderung" (which can also mean "incapacity")
Spanish's "discapacidad" (which can also mean "without power")
French's "invalidité" (which can also mean "invalidity" or "nullity")
Chinese's "殘疾" (which can also mean "deformity")
Korean's "장애" (which can also mean "failure")

(This list may not be 100% accurate since I am going by my own knowledge of these languages; obviously I am better at some languages than others. Please feel free to offer corrections.)

Some can argue that the English word "disability" itself would belong on this list too, due to "dis" meaning "not." This issue can get quite complex.

The safest term right now is likely "person with a disability" but do not be surprised if that, too, gets ousted over time in favor of another term.

Do the Paralympics matter?

2012-01-10T16:35:00.000-08:00

I have been meaning to answer this question for a while but procrastinated until the timing was right. Well, guess what. The timing is right!

My friend Jess from Vancouver, British Columbia asks:

You probably know that there was talk about whether the Paralympics should be merged with the Olympics... and whether the event has made an impact in disability awareness at all. What do you think?

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This question was submitted a few weeks ago and I was actually already planning to cover it in my other blog, Confined Abilities. But since a question has come in about this topic, I will answer it here instead!

With the Olympics and Paralympics coming up later this year in London, there has been talk about whether the two events should be merged. There have been some rather passionate arguments for and against this; those who are arguing for it are often drawing on the idea of equality while those against it are afraid that the Paralympics will be "swallowed up" by the much larger Olympics.

While there are logistical issues related to merging the two events (such as how to accommodate so many athletes in one city at the same time), I will try to analyze the social aspects of such an act.

Equality is a very relative concept. What is seen as equal to one person may not be seen as equal to another. Some can argue that merging the two events would be "equal" in the way that athletes with and without disabilities can get the same amount of exposure at the same time. Some also argue that due to differences in event size, magnitude and interest, it would be more reasonable to keep them separate in order for the Paralympics to have a chance of success (much like how some may argue that affirmative action has made it possible for previously neglected minorities to "catch up" to the majority).

The idea of equality can also range according to location and society. Having spent some time abroad, there are some instances of disability equality in other places that may be seen as grossly unequal here in North America. For example, I watched a news magazine show from China called "Guangdong Today" where they documented a school for children with developmental disabilities. They praised this school, which was created to keep students away from "regular" schools and in an environment where they are on academically equal footing. They saw it as providing them an equal opportunity to be educated. However in North America, that lack of mainstreaming may be seen as segregation instead of equality.

Equality is such a relative concept that it is difficult to say whether simply merging the Paralympics and Olympics would make things equal, or if separating them would be better. The truth is, your answer will depend on how you look at it and also on the disability culture in which you were raised.

Among all these arguments about how the Paralympics should be handled is the question of whether the Paralympics are effective at all. Certainly as an athletic competition, it is a world-class event and the pinnacle of adaptive sports. But like the Olympics, it is supposed to be a chance for the participants to shine in the public eye – images of athletes gracing the front of cereal boxes and giving pep speeches to gym-fulls of students come to mind. With the limited exposure of the Paralympics, can it truly make a difference in the "real world"?

People with disabilities face many issues in society, even in North America (which is often considered a global center for disability rights movements). These issues relate to employment, healthcare, education, standard of living, relationships and so on – in other words, they are things that people with disabilities cannot always obtain simply due to limitations beyond their control. Despite the social and regulatory advancements in the disability field, these continue to be sore spots.

Many people think that the Paralympics seek to contradict two things: the idea that a disability is a weakness and that glory is achieved through strength. Some may think, "If you can't walk, how can you be considered strong?" I think that is missing the point, and that the true objective of the Paralympics is to challenge the idea of "give/take" when it comes to people with disabilities.

What is the "give/take" idea? In the relationship between people with and without disabilities, there is a very powerful notion that those without disabilities "give" to those with disabilities, and those with disabilities are supposed "take" the help that is given. For example, it is common to see someone try to help someone in a wheelchair but when someone in a wheelchair tries to help others, it is often seen as strange.

With this in mind, I feel that the Paralympics give a chance for everyone to see that people with disabilities can "give" as much as they "take." It gives them the chance to produce something visible for people without disabilities and challenge the existing "give/take" notions. In other words, it can turn what was previously a one-way relationship to a mutual one.

So do the Paralympics make a difference in society? While progress has been slow, I believe it does. An example of this came recently when I was interviewed for a job in a very unlikely location – a car shop. Considering that I know next to nothing about cars, it was very surprising. The manager was interested in finding ways to sell cars and car parts on the internet but could not manage the technology. There were a few candidates and all of them had disabilities (recruited through a local job agency that specializes in finding workers like that). I was told that he was inspired to go this route because he saw a wheelchair basketball game at a community center and was impressed by what people with disabilities were capable of, and realized that this could be an untapped gold mine since many of those people had very marketable skills.

Simply hearing that was a welcome surprise and while not everyone who watches a Paralympic sport will think like this (or be in a position to hire people), there is no question that once in a while it can have an effect that can spill over to "real world" solutions.

The Paralympics definitely matter. But it is always easier to build ramps and elevators than it is to change people's perceptions. It may take a while for it to happen and it may not happen within our lifetimes but in the future it would not be surprising to see that things have improved drastically.

Weird questions

2011-12-16T05:26:00.000-08:00

My friend Larry from Rowland Heights, California asks:

Do people ask you weird things about you [because you're in a wheelchair]? ... What's the weirdest thing you've been asked?

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Interestingly, this topic came up during an encounter with Jocelyn from GimpHacks just the other week. In another incident, Tiffany Carlson wrote yesterday at New Mobility about someone asking if her boyfriend was paralyzed too. There is certainly a strange tendency for absolute strangers to ask weird questions to wheelchair users, for whatever reason. Some of these questions can get quite personal.

In general, I do not mind if people who know me or friends ask me questions. They are often hesitant to even ask in fear of offending or embarrassing me. (Their restrained curiosity and hesitation, in part, led to the creation of this blog.) I try to make it clear that since they know me, it is fine to ask questions, which is better than assuming things.

However, there are certain factors involved if someone wishes to ask me something related to my condition:

-how well the person knows me
-how close I am to that person
-whether that person needs to know the information
-whether that person would freak out at the answer to sensitive questions (even though that person wanted to know in the first place!)

With that said, things get strange when absolute strangers ask me questions. The questions can range from something very general (such as "How long have you been in a wheelchair?") to something very specific and personal (such as "Can you have sex?").

No matter how intimate the question is, when a stranger asks questions related to my condition within one hour of meeting me, it feels like he/she is not seeing me primarily as a person but rather he/she is putting my disability first before everything else.

Interestingly, questions about my equipment (such as my wheelchair) do not bug me as much. One reason is because I tend to be a "gear snob/nerd" myself sometimes and also because the people who tend to ask about equipment often fall into four categories: 1) senior citizens, 2) other people with a disability, 3) people who have friends/relatives with disability or 4) healthcare equipment professionals who happen to talk to me. These people are interested in mobility equipment mostly because they benefit from it or already know something about it. I have yet to meet someone interested in my equipment who does not fall into one of those four categories.

When it comes to friends and people I know, the appropriateness of questions tends to change. One big reason is because they have come to know me as a person first, putting the disability in second place as a result. Any information I give them will always be in second place after my personality.

That is why they feel like they can ask intimate questions like "Can you have sex?" and honestly expect me to answer. However, I wish they would stop freaking out at some of the answers. I remember explaining the bladder emptying process for people with paralysis and getting quite the reaction; if you ask the question, be prepared for the "no holds barred" truth! (I found the freak-out to be hilarious though; I can be quite evil sometimes.)

In closing, I think it is inappropriate to ask about someone's physical condition if you do not know that person very well. However, a free pass may be given to questions about someone's wheelchair or mobility equipment as long as you have some personal interest in it, either through your own medical condition, profession or relationship to someone who uses the same equipment.

And if in doubt, you can try sending the question to this blog and I will see if it can be answered publicly.

Types of wheelchairs

2011-12-13T00:01:00.000-08:00

VolcanoRupture from Tacoma, Washington asks:

Yesterday I overheard a guy in a wheelchair on the bus talking to someone about different "types" of wheelchairs. I think I have a vague idea of what that means, but can you explain that a bit?

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This is something that a surprisingly large number of people do not notice about wheelchairs. Not all wheelchairs are created equal! Quite often, "real" wheelchair users will be picky about this – especially when it comes to wheelchairs used in TV shows and movies.

You will have to excuse me for the excessive criticism of TV show and movies in this blog post. I am referring to them because the creators of such productions often do NOT see the difference between different types of wheelchairs.

There are basically three kinds of wheelchairs, and I will give them nicknames:

1. The Hospital Clunker
2. The Fancy Sleek Wheelchair
3. The Battery-Powered Super Chair
4. The Sports Wheelchair (okay, that is not so much a nickname but rather the actual term for it)

Let's break them down one by one.

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1. The Hospital Clunker

This is the type of wheelchair that many TV shows and movies use, and is part of what draws the ire of "real" wheelchair users. Why? Because these wheelchairs are not made for everyday use. They are primarily used for transporting hospital patients or the elderly; they are heavy and best used when pushed by somebody else.

Most people with long-term mobility impairments will NOT use this type of chair because prolonged pushing will result in a higher rate of "wear and tear" and injuries. They weigh 35 to 45 pounds – is it any wonder you can get hurt wheeling yourself around the city with this?

Besides, they are ugly. Very ugly.

But TV shows and films continue to use these Hospital Clunkers on characters who supposedly have permanent disabilities. Before we even find out about the actor's background, we immediately know that they did not cast a "real" wheelchair user for the role. It is akin to casting a Middle Eastern person to play a character from India – it lacks realism and feels like a type of stereotyping or profiling.

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2. The Fancy Sleek Wheelchair

Most "real" wheelchair users who have permanent mobility impairments will use a Fancy Sleek Wheelchair. These wheelchairs are often one-piece frames made of titanium or high-quality aluminum. As well, these wheelchairs have one very important aspect to them – they are CUSTOM MADE to the wheelchair user's measurements.

Wheelchairs are custom made to "fit the user like a shoe." What that means is that the length of your legs must conform to the length of the frame so that they are aligned properly. Also, your thighs have to be on the chair in a way that you are not "sinking into" the chair. These two are especially important because long-term sitting can result in complications like pressure sores ("bedsores"), particularly those with limited sensation in their lower bodies, such as people with paralysis.

Another modification might be a backrest to ensure someone who is sitting down for most of the day gets proper posture support. This is something that Hospital Clunkers often lack.

There are other reasons for customization as well, such as making sure it suits a person's particular condition. For example, someone with a spinal cord injury might have different needs than someone with cerebral palsy, and the wheelchair's customizations will address that and include features that are most important to that person.

An example of a feature that does not work for everyone is the backrest height. My own wheelchair is configured for someone with a low spinal cord injury, which is fine for me. But if you put me in a wheelchair for someone with a mid-level injury, I will likely have a very difficult time using it.

Compared to the Hospital Clunkers, the Fancy Sleek Wheelchairs also weigh less – MUCH less. Some wheelchair frames (without wheels or accessories) can weigh as little as 13 pounds. My own wheelchair, which is made of titanium, weighs 25 pounds – and this is with the wheels and accessories attached. So even with that "extra weight," it weighs less than a Hospital Clunker by itself!

There are several TV shows and movies that got this part right, most notably Saved! and Glee (although the latter did not get it quite perfect when it came to the custom sizing).

As well, some of these chairs are quite good-looking. Check out some of the chairs from TiLite (my chair's brand), Colours in Motion and Invacare. Pay close attention to how the chairs look and compare them to the Hospital Clunkers. There is a big difference.

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3. Battery-Powered Super Chair

The Battery-Powered Super Chair is something you may not see so much in TV shows and movies but when it shows up, it is often used by a character who may not necessarily "need" it.

What does that mean? In short, in real life, Battery-Powered Super Chairs are often used by those who cannot otherwise use a manually-propelled wheelchair, such as those with quadriplegia (limited or no use of the upper limbs).

Occasionally you may see someone with paraplegia (impairment in the lower limbs only) use it to prevent everyday "wear and tear" on the body but it seems that unless you are middle-aged, it is not very common to see that (and even for middle-aged people, it is not too common now). Nowadays, the technology for Fancy Sleek Wheelchairs seems to be improved to the point where Battery-Powered Super Chairs are not necessary for those with paraplegia.

These Super Chairs, while handy, pose a physical and possible psychological challenge.

Physically, these chairs are difficult to transport: they often weigh several hundred pounds each. If you drive a car like I do, it is next to impossible to bring one of these chairs unless you have an adapted/modified van.

Psychologically, there is often a fear among Fancy Sleek Wheelchair users that a Super Chair will make you seem "more disabled." This is by no means a knock on Super Chair users, of course, but there is a perception that Super Chair users are quite far down the hierarchy of those with mobility impairments. I am NOT saying this is fair or right, but that is how things seem to be right now.

I have been through this psychological aspect before. I went through several instances where I would be at a disability-related event and the demographics among the attendees would be mostly Super Chair users. As a Fancy Sleek Wheelchair user, I cannot begin to express how out of place I feel when this happens. Though I did not feel "better" than them simply because I use a Fancy Sleek Wheelchair, it is possible someone unfamiliar with disabilities will have that view.

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4. Sports Wheelchair

Some people think that Fancy Sleek Wheelchairs are sufficient for playing sports. Throw a basketball to a Fancy Sleek Wheelchair user, and he can play some one-on-one hoops with you, right?

Unless that person is really ambitious, there is a better way to do it – use a Sports Wheelchair.

Sports Wheelchairs are like the Sleek Wheelchairs – one-piece and lightweight. However, they have a few features that Sleek Wheelchairs may not necessarily have:

1. Tilted back wheels (called "cambered" wheels): this makes quick sharp turns possible.
2. Anti-tip wheels behind the seat: this prevents flipping backwards during play without slowing you down.
3. (Sometimes) collision frames near the footrest: this makes contact with other wheelchairs possible without causing injury to the user's legs or feet.

Try looking for these features in the photo above.

In addition, there may be accessories that may be used in sports but not in Sleek Wheelchairs, such as leg or torso straps (to prevent from falling forward out of the wheelchair).

Unfortunately, many TV shows and movies like to show competitive wheelchair sports being played in only Sleek Wheelchairs. While it is possible to play some sports with them, it is highly unlikely they will be used in competitive play. Sleek Wheelchairs are not as easily maneuverable as Sports Wheelchairs (due to the non-angled back wheels and heavier frame) and will very likely result in an upper body injury in competitive action due to that reason.

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That was a long read but I hope that clears some things up. So the next time you see someone in a Fancy Sleek Wheelchair, you can do things like differentiate between that person and someone in a Hospital Clunker with a temporary injury.

Relationships

2011-12-11T00:52:00.000-08:00

Rob from Durham, North Carolina asks:

How hard is it for people with disabilities to form relationships? ... Is it hard to make friends? ... What about dating?

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That is a very good question and topic. The answer is both simple and complicated. On one hand, having a disability is a disaster for relationships, both for friends and romantic partners. But on the other hand, it can strengthen those relationships. I will answer based on my experiences as a wheelchair user (rather than other disabilities), since that is what this blog is about.

First, I will talk about friends.

After I acquired my disability and started using a wheelchair, something happened. People who used to interact with me started tapering off. E-mails started to go unanswered. Phone calls ignored. Even a greeting gesture on the street would go unnoticed. Having a disability (pardon the term) sucks when you lose friends as a result of it.

The reason for that can vary. Some simply do not want the added hassle of having a friend with a disability. Some cannot handle the thought of their friend having a disability. There are also others who do not wish to associate themselves with people with disabilities – cruel but true. You really get to see the true natures of many people.

On the other hand, there are friends who are the opposite and will stick by you no matter what happens. While I lost a lot of friends, there were a few who remained despite everything and I have always been grateful for that. These are the friends who will consider my situation when thinking about what kind of things to do; they will be okay with not going to a place if wheelchair accessibility is a problem, or with taking the scenic route to a place because of obstacles like stairs, or helping to push your wheelchair up a slope if it is too steep to handle, and so on.

In that way, having a disability is perhaps a great "friend filter" as it filters out your genuine friends from those who are not. The strength of a friendship depends on whether you, as a person, matters more than your disability.

What about romantic relationships?

I have not pursued a romantic relationship for a long time but have encountered a situation before involving an old high school girlfriend. She was working on the SkyTrain system here in Vancouver as a station attendant. She recognized me but I was too terrified to say that it was indeed me. Why was I terrified?

The main reason is because in public, most females who are my age (mid-20s) have looked at me with the two looks I hate the most – the pitying look or the look of sadness. It is difficult to describe but it is basically a look that either says, "Poor guy, ending up in a wheelchair and all" or "You remind me of what horrible things can happen to someone in life, and that makes me sad."

I hate that. I do not know if I am the only male wheelchair user who gets that.

However, it seems (to me, anyway) that those two looks come most often from women, and not so much from other men. That kind of look gives me the impression that male wheelchair users are often NOT the target of romantic relationships because of the overlying feeling of pity or sadness which undermines any feelings one would otherwise have for a male. (I cannot speak for female wheelchair users though, since I am not one; if you are, feel free to comment about your own experiences.)

Now, back to the encounter on the SkyTrain.

My old high school girlfriend recognized me but I was terrified to identify myself. But one thing that stuck out in that encounter was that she lacked the look of pity or sadness that I often see from females who look at me. Instead, she seemed to see me as a person first; the disability was secondary and perhaps mattered very little.

That sounds like something that should happen more often but for some reason, it does not. It is, therefore, not surprising that it is incredibly difficult for wheelchair users to find romantic partners. It is far from impossible but it is notoriously difficult, partly due to people's prejudices and perceptions of disability as a horrible thing to be avoided.

Again, these are my own experiences. Others may have different ones.

All eyes on me

2011-12-06T23:47:00.000-08:00

Joe from Conyers, Georgia asks:

Do people stare at you a lot? ... Does it bother you when [they do]?

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This is one of the most common questions about wheelchair users that people like to know. Why is it asked so often? Part of the reason is because everybody has a different answer to this.

Being in a wheelchair, I tend to stand out whether I like it or not. Some people never get used to the staring, but others do. I am somewhere in the middle for a few reasons, the biggest one being how I am still considered a fairly "new" wheelchair user compared to other people.

When I first had to use a wheelchair, I was terrified of being in public. Part of the reason is the potential for people to stare. I went through the same experience when I first had to wear glasses. Even though it was a necessity, the prospect of having new glasses or a wheelchair scared me.

Some people do stare at you like you are a sideshow. Even though I had been taught how to get around in a wheelchair, I paid a lot of attention to doing things right – it was of the utmost importance that I avoided doing something such as hitting a crack and taking a spill or lose control while going down a slope. I knew that if I screwed up, it would lead to more staring and I wanted to avoid that. To this day, I still have this fear in the back of my mind.

What I found was that it was a mixture of staring and complete avoidance. Some people would be fixated on me while others would act like I wasn't even there. These two extremes are best displayed at places like stores: some clerks will not even acknowledge your presence while others will pay special attention to you in case "you needed any help." The avoidance can become a problem when you actually DO need their help, of course!

So why is there a mixture of staring and avoidance?

The staring is easier to understand. Often it is not malevolent – people stare because they are curious but do not wish to express their curiosity with words. If you were to stare so intensely at an able-bodied person in a place like Canada or the United States, it may be interpreted differently.

I like to relate the staring towards wheelchair users to the staring that a Caucasian person may get in an Asian country. When I was in Asia, many non-Asians told me that they got a lot of stares but they understand it is from curiosity more than anything, since some areas are not accustomed to seeing non-Asians. I believe it is this same type of curiosity that causes staring in the West towards wheelchair users.

The reason for avoidance is much more harder to pinpoint but the prevailing theory is that it comes from childhood. When I am out and about, parents tend to direct their children away from me or tell the child to not stare or ask questions. Over time, the child is trained not to look at or interact with wheelchair users at all, resulting in avoidance.

Is this the right thing to teach our children? This is a much-debated question.

Those who say "yes" are often basing their answer on etiquette. They are trying to get their children to not be rude (by staring) or nosy (by asking questions).

Those who say "no" are often trying to promote understanding by familiarizing children with disability culture from an early age. It is theorized that if children are taught not to ignore people with disabilities, it will result in a more inclusive society.

Personally, I am in favor of the latter answer. I do not mind children asking questions because they are simply curious; it is also a great age to start learning about how other people live, whether it be related to different cultures, nationalities, sexual orientations or abilities/disabilities.

What about older children, teenagers or adults? In general, I do not mind older children or teenagers asking questions either. For adults, it depends on the person because I find that some adults hold some very concrete (and often incorrect) prejudices and assumptions about disability that are hard to crack even with the right information, for whatever reason. Older children and teenagers have prejudices and assumptions as well but they are not as concrete and inflexible as adults. This is my own observation, so other people may have different experiences.

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Concluding thoughts

Does staring bother me? It does, but so does avoidance. When you hear the word "inclusion," it does not mean treating certain groups differently but rather the same as everybody else. Both staring and avoidance are based on treating me differently because I am in a wheelchair. Treating me like everybody else you know would be the best solution.

Should we teach kids not to stare or ask questions? I do not think so. I think it is important to promote understanding at an early age before adulthood, when the more hardened prejudices and opinions about people with disabilities set in. I do not mind children and teenagers asking questions; I would rather have them ask questions than make assumptions that continue into their later years.

I understand that the staring is often due to curiosity, and not everyone gets a chance to ask the questions that satisfy that curiosity. That is what this blog is for – hopefully by answering questions, there will be fewer stares because you will already have some sort of understanding.

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Keep the questions coming! No question is off-limits (as long as it has benevolent intentions)!

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Helping people in wheelchairs

2011-12-02T15:21:00.000-08:00

JetPack from Winnipeg, Manitoba asks:

What are the rules about helping people in wheelchairs? When they need help, what do I do?

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This is a very broad question, so I hope my answer isn't too broad as well.

Obviously, everyone is different. People use wheelchairs for different reasons. However, one thing that everyone wants is to be treated as normally as possible. Nobody wants to be treated like a freak.

Unfortunately that is hard to avoid if you are using a wheelchair. People treat you very differently. I could go on and on about it but to stay on topic, one very important form of "special treatment" we get (usually without asking for it) is help.

It is true that some wheelchair users do require help once in a while. But the blanket rule right now is this: If the wheelchair user needs your help, he/she will ask for it.

There is a tendency for people to help wheelchair users as much as possible, but many of us want to do things on our own first, or at least try. In fact, that is what rehabilitation centers are supposed to teach you – those places teach you to make the most of the parts of your body that are still functioning and do things yourself instead of relying on others for help.

This includes moments when it appears like the person is struggling to get something done or is doing something very slowly. Unless the person is looking around or asking for someone to help, don't step in.

I'll include an example: When I am getting back to my car, it is impossible for me to simply hop right in to the driver's seat and drive away. First, I have to lift my body from my wheelchair on to the driver's seat. Then I detached the wheels of my chair and stow them. After that, I fold down my chair's backrest and lift it on board and onto the passenger's seat. Finally, I can close the door and start the car.

As you can imagine, this can take a great deal of time (though I have mastered the art of doing it in under a minute). But there are countless times when passers-by would stop and ask if I need help because from THEIR perspective, it looks like I am struggling and taking forever. This does not mean that I am incapable of doing it – it just takes longer.

Of course, there are other ways of "helping" that may not always require asking for help. One such way is holding doors for someone. This is a normal courtesy regardless of whether you are able-bodied or not. However, many people tend to hold the door open for me completely – while standing in the door frame and in my way. That is obviously not the correct way to do it.

If you wish to hold the door open completely for a wheelchair user, make sure the doorway is clear. If the person seems to have good hand function, he/she might tell you that he/she's "got it." That is often an indication that your help is appreciated and no longer needed.

For double-doors, some manual wheelchair users may use one door as leverage while opening the other door. Hence, do not try to create a scenario where both doors are open because that may throw off the wheelchair user's center of gravity (remember: he/she is using the second door as leverage).

Of course, there is the occasional able-bodied person who thinks they are doing you a favor by pushing the automatic door button for you. I can never understand those people.

That is all I have to say about assistance with doors. The other big one is assistance with slopes.

It is no secret that slopes are wheelchair users' Achilles wheel. (I'll let you absorb that horrible pun for a second.) But similarly, wheelchair users will ask for help when they need it. Do not, under any circumstances, push the wheelchair user without asking. This is dangerous because if the chair is in motion, it may throw off its center of gravity and cause it to tip.

Some wheelchair users, such as myself, refuse to add push handles to their chairs for the precise reason of discouraging people from simply jumping in to push without asking. A wheelchair is considered part of our bodies and our personal space; pushing it without permission is a personal space violation.

But what happens if a wheelchair user does need to ask for help for slopes or a few steps?

The most important thing is to ask or listen to EXACTLY what the wheelchair user tells you to do. Don't make assumptions about what you need to do to help.

Every wheelchair is different; obviously, the person sitting in it will know it the best. For example, I know exactly how my wheelchair would behave on a slope or going up steps. I also know which parts are detachable or movable. Therefore, it is imperative that you listen to the instructions the person in the wheelchair gives you, for both parties' safety.

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This is a long post. I will summarize it here for those who only skimmed through it:

- Don't help a wheelchair user unless he/she asks for help.
- If a wheelchair user appears to be struggling to do something or doing something slowly, don't assume he/she needs help.
- If assisting with doors (in a way that you'd assist any able-bodied person), make sure the doorway is clear for the wheelchair to enter.
- For double-doors and manual wheelchair users, don't try to assist by opening both doors. (One door is safer.)
- If asked to help, don't make assumptions on how to help – wait or ask for instructions and follow them.

Moving legs?

2011-11-29T12:32:00.000-08:00

Marcus from Calgary, Alberta asks:

The other day, I was at the mall and we saw a girl in a wheelchair. She was talking with a friend and suddenly she crossed her legs by herself. Was she faking it? Is there something that I don't know about?

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Ah, what you are doing here is making assumptions. No worries, you're not the first one to do it. I blame it partly on the rapid increase of disability awareness in society, particularly awareness of spinal cord injuries.

The world was thrown in the "spinal cord injury awareness frenzy" when actor Christopher Reeve was injured and paralyzed from the neck down. In addition, we already had public figures such as Stephen Hawking. Both of them are perhaps the most globally wide-spread influences on spinal cord injury awareness.

What is similar between those two is their inability to walk. By "inability to walk," I mean they are not able to walk, PERIOD. Zero steps. The reasoning behind it seems simple – Christopher Reeve had a broken spinal cord and Stephen Hawking had a paralyzing medical condition.

But...

As a whole, humans often see things in black and white. You either "can" or you "can't." To be somewhere between the two is hard to understand. The common perception is that someone who uses a wheelchair "can't" walk.

And it is often incorrect.

A wheelchair, by definition, is an assistive device. It is designed to allow people to get around more easily. For example, think about senior citizens. Many of them can walk but some cannot walk very well or efficiently, so whenever the family takes them out somewhere, they might have the senior citizen use a wheelchair to make it easier and less stressful. On the same coin, some people may have conditions or injuries that make independent walking difficult, inefficient or downright exhausting.

Using spinal cord injury as an example, not all people with spinal cord injury are unable to walk. Even for someone whose injury is at the neck level, he/she may be able to move his/her arms or hands to a certain extent. Some can even take a few steps. This is called an "incomplete spinal cord injury," meaning that the spinal cord's nerves were not completely severed and some movement or function remains.

We don't know if the girl you saw at the mall had a spinal cord injury, but if she did, it would be an incomplete injury, which explains why she was able to move her legs – that is actually my situation as well, as I still have some movement in my legs and can take a couple of steps with assistance.

Another possibility is that she has a condition or injury that makes walking difficult or impossible, without resulting in paralysis (such as cerebral palsy). Some people have muscular disorders that prevent them from using their muscles but do not necessarily affect movement. There are many reasons for using a wheelchair other than paralysis.

The most important thing to take from this is that not all people in wheelchairs are paralyzed and some people with paralysis have incomplete paralysis, thus retaining some movement, sensation or control.

It is nice to have spinal cord injury awareness. But just like not all Canadians live in igloos, not all people with spinal cord injury or in wheelchairs are the same either. One person may use a wheelchair for spina bifida, another may use one for spinal cord injury and so on. Everyone is different.