Weird questions

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

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

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

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

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?

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.