Life on Wheels (47 page)

Beliefs about disability are planted very early in life. It’s evident from the experience of any chair rider in any shopping mall in America. As you wheel through the crowd, parents frantically pull their children out of your path. Of course, parents naturally want to protect their child from a collision and are likely trying to be considerate so you don’t have to maneuver around the child. But the message the child gets is that something is not OK with a person using a wheelchair.

Another scenario is more telling. Many children will innocently come up to you and ask why you are in a wheelchair. They don’t yet know that it is “rude” to ask. The child’s interest makes the parent very uncomfortable, and that gets communicated. Irving Zola wrote:

Children are not mature enough to understand these boundaries, and there is a danger of communicating through your actions that people with disabilities are unapproachable. You can be in the delicate position of wanting to demonstrate that disability is a feature of many people’s lives and does not preclude a full life, while at the same time being entitled to your privacy and dignity.

Sometimes parents will give the child their own answers:

How you respond to being asked about your disability is a personal matter. In a given instance, you just might not be in the mood! You will have to find your own balance. You can decline politely, by saying that it is a private matter and that you reserve discussions about such things to people you know better. The more someone gets to know you, the more appropriate it becomes to ask such questions. As Carol Gill says, “If you have an intimate relationship, you’re allowed to ask more intimate questions.” Just as often, people will delay or avoid asking about your disability.

Attorney Deborah Kaplan is quadriplegic but is able to stand, has full sensation, and is a mother. She also has more than 25 years of disability activism behind her. She says:

The more significant or visible the disability, the larger the attitudinal obstacle you’re likely to encounter. Notes Carol Gill:

Professor Zola granted the value of his family and support system in adapting to polio and subsequent auto accident injuries, while at the same time condemning societal attitudes:

But appearances are not the only thing that counts. Says psychologist Gill:

Perhaps your interactions with ablebodied people are a chance for them to learn from the experience. Perhaps, as they encounter the truth of a person living with a disability, they can adjust their beliefs after seeing the evidence of an active person living fully with their disability.

You can also hope that children will grow up knowing better because they are increasingly living in a world where people with disabilities are visible, active, and part of their lives in meaningful ways—including children with disabilities who are increasingly mainstreamed in the public schools and our communities.

You have an important contribution to make to this society. You are in a position to teach that focusing exclusively on narrow standards of physical beauty, youth, and conventional athleticism is a problem for all of us. By continuing to demonstrate that you are not looking to be cared for, but to be treated as a whole, self-determining person with the right to make your own decisions and have a full life, society gets the chance to develop values that respect everyone.

Carol Gill expresses her view:

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Selecting the optimal wheelchair is a crucially important process for you. All of the choices you have to make can feel overwhelming if you are choosing your wheels for the first time. You might anticipate that you will recover from your injury or illness, so you wonder why you should even bother to get a wheelchair at all. But the right wheelchair is a liberator, not a prison. When you configure the right chair for you and your abilities, your quality of life increases dramatically. Even people with significant disabilities can have a considerable degree of independence and activity with the right chair—more, in fact, than ever before in history. That’s small consolation when you’re facing a recent loss of mobility, but perhaps you can appreciate how much more limited you would have been not so long ago, but for the dramatic advances in wheelchair design described in this chapter.

Wheelchair design has advanced tremendously. No longer limited to the aluminum folding chairs you might be accustomed to seeing in hospitals or airports, there is now an immense array of designs and options for both manual and power wheelchairs. Wheelchairs are highly adjustable— or even custom built—available in various sizes, with features that make them easier to drive, safer, and more dignified—even stylish.

Modern chairs are also better-looking; even power chairs have become less bulky and obtrusive and institutional-looking. The visual emphasis on disability has been reduced, bringing more attention to the user of the chair instead of the chair itself.

This chapter discusses the issues involved in selecting a wheelchair, including funding, researching products from various manufacturers, working with professionals who will advise you, the many features and options of manual and power wheelchairs, and criteria to help you navigate the sometimes complex web of choices you will face.

The optimal approach to selecting a wheelchair is to work as a team with a therapist (typically an occupational or physical therapist) who specializes in “seating and positioning,” and a local dealer who will actually provide the chair along with support services, such as adjusting it properly on delivery. But no matter how skilled and knowledgeable your therapist and salesperson are, you are the leading expert on you. You are the one whose life depends on having the right wheelchair, so it is very, very much in your best interest to take an active role in its selection. Learn as much as you can, and be patient with the process before making the final choice.

Other chair users you have encountered—possibly from your rehab experience, support groups, participation in athletics, or your local center for independent living—are valuable sources of information about wheelchairs. But keep in mind that experienced chair users tend to be very opinionated and vocal about their choices. You can learn much from what others say, but what works best for them might not work for you. Each person’s physical capacities, body type, and lifestyle are completely unique as a set, so your wheelchair must be unique to who you are and how you intend to live.