My wife and I travel a lot by car. When we pass a bad accident on a highway my wife sometimes looks out the window at the ambulance and says, darkly and sardonically, something to the effect of, “Welcome to the world of disability”. She knows whereof she speaks. She speaks from a wheelchair that rides beside me in the car. She has severe cerebral palsy.
She has a point. We all live on borrowed time. If you live long enough without having that big one (accident or illness) that leaves you disabled, the aging process will relieve you, slowly, of many of your abilities. I believe that Americans spend a great deal of time denying, and very little time contemplating their eventual loss of ability. Americans, with their incredible sense of personal independence, have an equally incredible fear of losing that independence.
As evidence of this fear I submit the Clint Eastwood directed, Academy Award winning movie, “Million Dollar Baby”, in which the hero (Clint himself) trains a young woman to become a champion boxer. But, just before the championship fight, she breaks her neck. The hero helps the devastated, now quadriplegic, young woman, commit suicide, driving home the very American sentiment that, one who leads a very active, normal, independent life is better off dead if denied that life.
My wife hates the movie. All people with newly acquired disabilities go through several stages of grieving, including a suicidal period. With good counselling and time that person can emerge on the other side of these stages a whole being, ready to live life to its fullest. With bad or no counselling the newly disabled can get stuck in one of these stages and never get beyond it.
The unbearable horror felt by the Eastwood character at seeing this strong, vibrant, robust human being brought that low, led him to the conclusion that the only decent thing to do was to help her end her miserable, pointless life. As my wife says, “Pity kills.”
No wonder then that a person living with a severe disability might get the feeling that, if all able-bodied people would rather be dead than disabled, and disabled people are costing society a lot of money to keep their miserable selves alive, maybe the decent and most courageous thing for disabled people to do is to commit suicide. Suicide begins to feel like a social obligation, for the good of the whole and for the good of the tender sensibilities of those able-bodied people for whom the disabled are unnecessarily grim reminders of something horrible that might happen to them.
Well, my point is that Americans so value their personal independence that the loss of it by forces they cannot control is something more horrible than they care to contemplate, and we seldom do. The problem is that, if we do not contemplate it, if we deny it as a possibility for our own life, we will never understand the lives of those who must live that life. Further, with that lack of understanding, we will make life for those people with disabilities much more difficult. We thereby fulfill our own prophecy that people with disabilities live a terrible life, a life we could not bear to live.
It may surprise many that most disabled people do not want to commit suicide. It takes a lot more courage for a newly disabled person to remain living than to commit suicide. And the rest of their lives will require more courage than you and I have to muster just to maintain that drive to live. More of us able bodied people think it is courageous for the disabled to commit suicide. In a study by P. Cameron in the Journal of Consulting and Clinical Psychology there was no difference found in the responses of able-bodied and disabled respondents’ when asked to measure the quality of their own life.
A study K.A. Gearhart and others, conducted in California, surveyed quadriplegics about the quality of their lives. 86% thought the quality of their lives was average or better than average. These researchers gave another survey to ER doctors, nurses and technicians, asking them what they believed the quality of their lives would be like, if they were to become a quadriplegic. 17% thought their lives would be average or better, the rest, 83%, pretty much thought their lives would suck. The point is this; would you really want to trust your medical care to someone who thought your life was barely worth living? And, by extension, can a society that views you with horror and pity be trusted to allow you to live a self-directed life that is as independent and productive as possible?
So, how did I, an able-bodied male, come to know so much about people with disabilities? I married one. But she is not your run of the mill person with a disability. She is active in the disability rights movement and eats, drinks and breaths it. I, personally, am not so passionate about it, but it rubs off. Now that I have met my wife, when I meet someone with an obvious disability, I see the disability same as you would, but it no longer consumes my interest, and I probe further, knowing that I have the right to like or dislike this person.
My point is, of course, that we all have disabilities, what we really are talking about is only the degree and visibility of the disability. In reality a disability is any trait or physical feature that makes us unable to do certain things that we might otherwise want to do.
A guy from my high school class is wildly successful and famous, but he has had five wives and has a family that hardly speaks to him. I am, apparently, more successful than he because I have had only two wives and my children speak to me. Our abilities and disabilities lie in different areas.
My wife describes herself as one who shakes, rattles and drools because she has severe cerebral palsy, yet she has enjoyed more successes than the much of humanity, chief among them, for me, is that she is a very lovable person . . . . usually.
But, for purposes of categorization, society classifies some people as “people with disabilities”. The Social Security Administration defines a person with a disability something like this, “a person regarded as having a disability”. That settles that, I guess.
I have no brilliant insights to teach anyone. My intent in this piece is just to nudge your relatively able-bodied understanding of people with disabilities up to a slightly higher level. For the most part, when my wife and I go out in public places people treat her really well. But there are a lot of places where she cannot go because many commercial locales are exempt from ADA rules and lack wheelchair accessibility. Even though my wife has had her disability her entire life, not one of her parents, siblings, aunts or uncles has a home she can easily enter. There are very few homes she can enter, only because almost all American homes have at least a six inch step at the entrance. That step is unnecessary, it causes accidents and it makes entrance into the home difficult for mothers with strollers, people with walkers, movers with dollies, people bringing in the groceries, etc. Having a house, like ours, with a no-step entrance is a great convenience, in many ways, and, as yet, I have found no disadvantages. Yet many people believe the world would end if that step were not there. And home builders and remodelers will try to convince you that to leave out the step would increase the price of the home to well beyond most people’s financial reach and would stigmatize the home for future sale. Both of which are gross exaggerations.
There is a concept called visitability, supported by the disability movement, which would have builders build homes that have a no step entrance, wider bathroom doors and halls. I have seen many such homes, and if you were to enter one the only difference you might notice is that it is pleasantly, a little roomier. But to a person in a wheelchair the extra two or three inches makes all the difference in the world. Ironically, many homes could be made wheelchair accessible with a small, temporary, portable ramp made of a 4’ x 8’ piece of flooring with a 2” x 6” piece of lumber screwed to the end of it edgewise. We built one for my wife’s sister’s house. She stores it conveniently in her garage. When we visit I get the ramp from the garage, lay it down and my wife rolls in. The pity of it is that if we had not built it ourselves my wife’s disability would be blamed for keeping her isolated from her family. Let me point out that her disability causes her not to walk, the family’s lack of concern and creativity causes the isolation.
It is this sort of isolation, frequently experienced by persons with a disability, which isolates them and leads to loneliness, depression, and, sometimes, a kind of bitterness . . . . those kinds of things that make us not want to live their lives.
What can you do? When a family member, colleague, fellow church goer or friend dismisses or excludes a disabled person with, “What can we do, they have a disability?” Dare to ask, “ya, what can we do to include them?” Persist on it. Advocate for them a bit. You can make their lives much better and help make able-bodied people less fearful of their disability, hence more likely to replace pity with helpfulness.
Being disabled is not fun, but with a small amount of effort and creativity you can help make the lives of people with disabilities much more pleasurable and meaningful.
I have written two poems about My wife and the nature of our relationship. They can be read at the following sites: http://authspot.com/poetry/the-work-of-life/