Two separate posts about disability issues have had me thinking lately about the way in which our society systematically devalues the disabled body. One, on Feministe, about a casting call for someone to play a disabled character, and another, on Hoyden About Town, about a shameful chapter in the right to die debate. The very word “disabled” is devaluing, although as Amandaw at Three Rivers Fog has pointed out, it’s difficult to come up with less problematic language; the way our language is structured, people who are ablebodied and neurotypical are the “normal” and people who are not are “abnormal,” with the implication that they are also lesser.
One of the problems with having discussions about disability issues is that people with disabilities are not out there, in public, in the same way that other subsets of the human community are. This is because of the fact that society has devalued people with disabilities, creating a vicious cycle in which people with disabilities are erased so that we can feel comfortable continuing to marginalize them. The assumption often seems to be that life with a disability is not worth living, and therefore any measures taken to promote quality of life or community engagement are useless (much like disabled bodies themselves, in the framework of a society which fears disability).
As a society, we have not placed a high emphasis on accessibility. We have not created a society which is friendly to people with disabilities, which as a consequence makes it very difficult for them to engage with the world of the ablebodied; even people with economic clout who have access to numerous tools and resources face struggles with simple tasks like navigating a street, because society is primarily structured for the benefit of the ablebodied. For people living in poverty, or people of colour, it’s even more difficult to get basic support, and this can lead to situations in which people are trapped in homes or residential treatment facilities. Not because they are disabled, but because society has refused, in any way, shape, or form, to accommodate them or to recognize that they are human beings who have a right to be part of our society.
I regularly see business owners complaining about ADA regulations and other measures which are designed to make the world more easy for people to navigate when they can’t walk, because apparently, if you can’t walk, you don’t deserve to be an active member of society. I regularly see people with disabilities marginalized everywhere from public transportation to traffic law; it is viewed as unreasonable that people using mobility aids and other assistive devices should expect to be able to negotiate the street, ride a bus, or even safely navigate the side of the road. I regularly see people with disabilities marginalized in careless language, from the President of the United States making derisive comments about the Special Olympics to friends who routinely inform me that things they don’t like are “lame.” And for people who are bedridden or unable to leave their homes for other disability-related reasons, there is nary a hint of suggestion that support could be provided to make life more enjoyable, more full, more rich. After all, if you’re bedridden, what do you have to live for?
This is a society in which the lives of people with disabilities are not highly valued. The post on Hoyden About Town just about broke my heart, with the description of a disabled man who has been marginalized and forced into a position of such utter misery that he would rather die than go on living. He doesn’t want to die because he’s disabled. He wants to die because his living circumstances are deplorable, because he’s trapped in a bed in front of a television set. Apparently, actually providing him with things which would improve his quality of life is so pointless that it would be better to just let him rot. The ruling to allow him to refuse nutrition is, as the author points out, not a “win” by any stretch of the imagination, and it amounts to little more than the government doing a terrible job from the start and being grateful to pass the buck.
I believe in the right to die with dignity, but the Hoyden About Town post made me realize that I prioritize the right to live with dignity. I believe that all people have a right to live rich, happy, excellent lives, and we as a society need to make sure that they are provided with the tools to make that happen. The ablebodied, who control much of society, need to break themselves of the beliefs that life with a disability is tragic, not worth living, and inherently lesser than that of our own lives. We need to promote the idea that all people should have equal access to society, equal value in the eyes of society, and the equal potential to contribute to society. It is not for us to decide when life is and is not worth living, nor should we pat ourselves on the back when someone society has thrown away decides to die rather than enduring a restricted and grim existence.
If someone decides that ou wants to die rather than enduring several months of pain and misery in the end stages terminal cancer, or feels that ou does not want to live through the end stages of a severe neurological disease, that is their right, and they should be provided with the tools to do so. But people should not be asking to die because society has made their lives miserable. And we should not be providing such poor treatment and support to people with disabilities that they want to die rather than go on living; we should not be devaluing life to the point that people come to believe that they are worthless or have no hope.
The devaluing of the disabled body leads to assumptions. Like “all people with disabilities are miserable and longing to be un-disabled.” Or “people with disabilities don’t have sex.” Or “people with disabilities can’t lead normal lives.” Or “all people with disabilities are heroic/romantic figures.” Society collectively silences people with disabilities and would prefer that they be shut away somewhere where people don’t have to look at them because they make people uncomfortable, and society expects people with disabilities to adhere to its own views and opinions of disabilities, to behave gratefully when society throw them scraps from the table, to be brave and cheerful when society tells them with a patronizing smile that there’s “only so much we can do, really.” In all of this, members of society never stop to examine their own assumptions, nor do they stop to consider the fact that they are being every bit as foul as the racists and misogynists of the world.
We are at a point in society where most people are offended and upset if they are called out on racist and misogynist behavior, because while racism and misogyny are still widespread problems, we collectively believe that race and sex should not be used as grounds for discrimination, and that the history of discrimination and abuse against women and people of colour is wrong and shameful. We have come to believe, in other words, that devaluing people on the basis of sex and race is wrong.
We haven’t yet reached that state with ableism, and I want to know why. Why is it that people raising questions about problematic language in the sphere of disability issues are accused of being “too PC”? Why does society expect people with disabilities to strive for as close a simulacrum of “abled” life as possible, and why does society get offended when people with disabilities are proud of their disabilities, or reject things which are supposed to make them more “normal”? Why are people angry when people with disabilities ask for basic dignity and respect? Why is it that people routinely think it is acceptable to devalue people because their bodies or brains are not like theirs?
What is normal? What is abnormal?
(Thanks for the links, Lauredhel and Anna Winter!)
