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.