Aug 1, 2012

Questions: Where do they come from?

SCI-BC from Vancouver, British Columbia asks:

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

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.

Jul 8, 2012

Wheelchair users and exercise

Magnus from Malmo, Sweden asks:

How do people in wheelchairs exercise?
---

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.

Jun 3, 2012

Helping people in wheelchairs

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?

---

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.

Apr 28, 2012

Assumptions about disability

Blogging Against Disablism Day, May 1st 2012
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?

---

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

---

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.

---

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.

---

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).

---

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.

---

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.

---

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.

---

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.

---

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.

---

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!

---

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.

---

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).

---

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.

---

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.

---

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.

---

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.

Apr 1, 2012

Prolonged wheelchair sitting and how to combat the effects

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?

---

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.

Mar 22, 2012

Accommodations

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?

---

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.

Mar 13, 2012

What are we called, exactly?

Tammy from Manchester, England asks:

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

---

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.

Jan 10, 2012

Do the Paralympics matter?

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?

---

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.