I do not like to use the term ableism. There is more than a bit of irony in this and a good friend pointed out recently that ableism is the first entry in the ABC-CLIO Companion to the Disability Rights Movement edited by Fred Pelka. For those unfamiliar with this book it is an invaluable resource. I consult it often and the first entry, Ableism, begins: "Ableism is that set of often contradictory stereotypes about people with disabilities that acts as a barrier to keep them from achieving their full potential as equal citizens in society". What a great start to an encyclopedia type text devoted to disability rights. Yet, this does not address why I do not like the word. As I thought about writing this entry today, the day before many celebrate May Day, I told my son I was struggling with how to address ableism. Far from a diplomat, he replied "Dad, ableism is a stupid word. Nobody aside from people who know a lot about disability will have any idea what you are talking about. Those people are not the one's that need to understand what ableism is". Leave it to a teenager who thinks he has the answer to the world's problems to get down to brass tacks.
While I may not like the word ableism, I certainly was taught what it meant at a young age. In fact, I was taught what ableism means by mother within months of being paralyzed and well before the word existed. Thus when I think of the word ableism I think back to the days when I was a newly minted crippled dude. The year was 1978. I was 18 years old and had just emerged from a ten year medical odyssey that left me paralyzed. I did not have a clue as to which end was up. I was struggling to figure out how to drive with hand controls, take care of my paralyzed body, and return to what I expected to be a normal existence. It did not take me long to realize that a normal life was out of the question. This left me confused and I had a tendency to avoid social interaction and anything that resembled a confrontation. I was also worried about returning to school where I had been known as the kid that was always really sick and upon my return became the kid that used a wheelchair. I was not pleased and felt more than a little sorry for myself. This bring me to the point of this entry: my mother taught me to confront ableism head on.
One day I drove myself to high-school in my parents car and discovered there was no handicapped parking. When I got home I told my mother about this in a woe is me fashion designed to prompt sympathy. This went over like a led balloon. My mother told me in no uncertain terms that rather than whining about the lack of a parking spot for handicapped people I should do something about it. I replied, "Yeah, what can I do I am just a student". She told me "Tomorrow I want you to drive to school and park in the principal's parking spot. If he has a problem with this tell him there is no handicapped parking. If he gives you any grief call me and your father". I was in my first period class when the principal walked in the door and asked "Who is William Peace and why is his car parked in my spot". Stunned silence ensued, I turned red as an apple and was asked to follow him to his office. I felt like a man heading to gallows and asked to call my mother. But then a strange thing happened. I told him exactly what my mother told me to say: "I parked in your spot because there is no handicap parking. The day before I parked very far away in the student lot and had a hard time getting to the only accessible school entrance". Hardly impressed but willing to listen I dug in my heels and questioned why handicapped parking did not exist. A few minutes later my mother walked in the door. She gave the principal a withering stare only a furious mother can produce that strike fear into the hearts of others. Two things dawned on me: first, my parents were behind me 100% Although I could no longer walk, I was still the same person. Second, I realized I had to assert myself. That morning I learned I might be the same person I was before I was paralyzed but my wheelchair radically changed the way I was perceived. My mother used the lack of handicapped parking to force me to acknowledge this fact and assert my rights. By assert my rights I mean she taught me to reject ableism. Sure I was paralyzed but schools and other institutions had no right to treat me any differently. Basic and what has become known as "reasonable accommodations" could and should be made. My mother told the principal she and her husband would encourage me to park in his spot every day until the school created handicapped parking. This matter was not subject to discussion and the sooner handicap parking was created the sooner this issue would be resolved.
What happened when my mother and I left the principal's office? I went back to class and my peers were awed by my audacity. News of what I did spread like wild fire. My social status was only enhanced the next day when I drove to school and discovered next to the principals parking spot was a newly established area designated handicapped parking. I became folk hero among my peers. I was the guy that not only had the nerve to park in the principal's parking spot but in less than 24 hours get the school to create handicap parking. This was a watershed moment in my life. When I saw my mother defend me and force me to assert myself, I knew I would never accept a subservient social status. I could independently manage my own life. If confronted with ignorance and bigotry I was the one that must demonstrate I had the same rights as any other human that was bipedal. In short, my mother liberated me from an ableist mentality. I learned in a tangible way to reject the ism that forms the heart of discriminatory behavior. Since that day so long ago I have had no qualms about confronting ableism, asserting my inherent civil rights as an American citizen, and rejecting ableist beliefs that sadly remain common place some thirty years later. Too bad we cannot clone my parents who were ahead of their time and knew the importance of disability rights before the concept existed. As one reader of this blog commented I am very lucky to have won the parent lottery.
Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.
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Thursday, April 30, 2009
Ableism and A Water Shed Experience.
Posted by william Peace at 6:13 AM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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Wow, what an empowering story and a wonderful tribute to your forward-thinking parents!
Thank you, and thanks to your parents, for posting this as an inspiration.
I hope I introduce my own children to their worth and power the way your mother did for you.
I also hope you will post this to BADD... it would add rich perspective.
Full Tilt and Damon, Thanks for the generous comments. I am s strong willed person because of my parents. They are as close as to perfect parent as humanly possible. Not many people get to write a statement like that.
Your mother is a very wise woman.
Becs, My mother is a warrior, a hard assed Irish Catholic from the old school. She is the very definition of tough love and a woman I will always admire. The world would be a better place if half the population had her character, drive, beliefs, and energy. I am and remain in her debt for a myriad of life lessons I learned.
Thanks so much for adding this to BADD. It's a gift to those without parents who do that, and generous of you to share it.
Wheelie, I have put great thought into the role my parents and the family of people with a disability factor into our lives. With strong family support, the economic, social and political disadvantages disability generates can be negated. But what about all those without a familial support network? What happens to these people? For them, the ADA is virtually meaningless as too many rot away and die in institutions. Worse yet, what happens to be people like Ashley X whose parents seek a surgical and medical solution to social problems? We have a long, long way to go in the struggle for true equal civil rights.
Great post. Thanks. I hope to advocate for my own child this way, even though I'll be the one in the wheelchair. :-)
Haddayr, There are positive aspects of being a parent that use a wheelchair. For instance, my son sees me take a proactive approach to disability rights and consistently expect (demand) to be treated with equality. This is something many only learn later in life. My son is thus more mature than his peers whose parents do not encounter the same issues.
Wonderful post. I did park in an university administrator's spot as part of a protest against forcing disabled people to park further away when diabled parking is available. The student body president and a number of other student government members got involved--because of their actions, the ticket was dismissed, but the university blocked all attempts to change the rules. I included in my report an extensive list of universities across the nation that allow people with disabilities to park in the next closest parking when disabled parking is unavailable, to no avail.
This is about power, not the spaces, as one of the lots that I and others used always has many, many empty spaces and has never been full, though the disabled parking in it is alway full very early in the morning.
It's worth the try, though some people are as resistant as white racists during segregation and the black civil rights movements of the 1960s. Nothing moves them, not even warranties on expensive scooters or powerchairs that must be used during heavy thunderstorms (meaning close parking is a necessity), or someone's grave difficulty walking.
And yes, I immediately explained to administrators when I received the ticket why I parked there, as you did. I had already requested more disabled spaces but they have the number required by law, so they don't care if more people actually need them.
I like your mother, by the way. And haddyr, parenting from a wheelchair is unique blessing with many teachable moments.
What a wonderful post - and your mother really was ahead of her time. It's so amazing that she was able to help you so clearly through that experience - I still struggle with asserting my rights, realizing that it's not me being unreasonable. Kudos to you and your mom!
Frida, Handicapped parking is indeed about power. It is one of the rare instances where the general public thinks we people with a disability have an advantage. The fact that there is physical need for such parking spots is over shadowed by envy and resentment. Do those cripple bastards really need all those premier spots? And why are those spots so damn wide? I doubt this attitude will go away in my lifetime.
Never Easy, Yes, my mom and dad were way ahead of the world in terms of disability rights. More than once they told me I may not be able to walk but I was given a great gift--the ability to learn and think quicker than others. The incident about the parking spot was inconsequential but the symbolic message it conveyed was critically important. As for struggling to assert your rights, if you do not do that I am 100% certain no one else will. I consider this part of my to be akin to a moral obligation. I must assert myself for the next generation of people with disabilities so they do endure what I have been forced to handle.
thanks for such a great post--your mom sounds like quite the pistol. As many have commented, too often requests for accessibility run into legal obstacles (we already have the amount of parking spaces required by law) or get lost in the bureaucracy. While there a certainly still ways to make your voice heard and make changes, it can often feel like an exercise in futility, particularly since institutions seem to be perfectly happy following the law without ever consulting anyone with a disability about whether there are enough curb cuts, parking spaces etc. This often result in "accessibility" that meets only the most lenient of requirements. I was in a wheelchair in high school and remember trying to go to the bathroom in the disabled stall. It had seemed fine when I was walking, but it wasn't until i tried to wheel myself in there that I realized that the door was a few inches too narrow. would I have known that otherwise? probably not. and all too often things like the width of accessible bathrooms, whether the stairs have banisters, or whether there's a curb cut seem trivial to people--because they don't have to deal with it or think about it, so they say things like "we already have one curb cut". I don't know how you go about showing people what it's like not to have those necessities, but it is desperately needed.
Akheffernan, A major problem with regard to access for people with a disability is that we are not in positions of power. Compounding a lack of power is simply a matter of not being present when access issues are discussed. The result is that those who decide what a "reasonable" accommodation" is often have no idea what is required. Just because those little blue wheelchair signs are posted everywhere does not mean a building or bathroom for instance are accessible. As you point out, there is a great gulf between what is accessible in theory and access in reality.
Ooh, yeah, those blue wheelchair signs make me furious when a place is really inaccessible!
Frida, Those blue wheelchair symbols have nothing to do with real access--they simply make non-disabled people feel better. I stopped thinking they were useful long ago.
Hi, I thought this was a great post, and have linked to it in a post in my own blog.
The fight for access continues. I'm trying to get the word out to as many members of the disAbled community as possible that DOJ is changing the Americans with Disabilities Act effective March 15, 2011 to ban all service animals that are not dogs. This is extremely unfair to people with severe mobility issues who use monkeys as service animals, and Helping Hands is a wonderful organization that has been training these monkeys to assist folks with important tasks like eating, drinking, dressing, and face washing since the 1970's. Folks using miniature guide horses due to dog allergy or dog phobia will be able to be turned away at places of public accommodation. I'm trying to find as many people as possible to sign a petition to stop the change in the law, and here's the petition link:
two years after you write this post I am leaving a comment. Hope you get it. I am the parent of a severely disabled child and have struggled with the term abelism. When I googled it this post came up. I loved your son's take on things - and I think he's right. But the story of your mom and the parking spot was the best. I found myself grinning wider and wider as it went on. changing things now is hard. changing them in 1978 was nearly impossible - except for an 18 year old in a wheelchair. Nicely done! By you and your mom.
Maggie, I periodically check comments and this is one of my most widely read posts. My mother is a warrior! She is tough as nails old school Irish Catholic. I have learned so much from her about life. Your role as a parent to a kid with a disability is critically important. I read your blog and am impressed with your parental skills. Parents are important to all but even more so to people with disabilities. Your support can and will change your daughter's life for the better.
This was very touching, thank you.
I loved reading this article as a person with Muscular Dystrophy and Cerebral Palsy, from a very young age I had to stand up for myself, any way I could. I'm now apart of my ADA committee at my college to support students with disabilities. Thanks for your wonderful article.
I can definently relate. I loose track of how many people (even 'progressives') tell me to be quiet once they find out I have epilepsy and/or a learning disability. They don't want to hear about my need for accommodations. They don't want to hear that their event might not be bus accessible. They want to muse about 'social justice' which coincidentally does not include me or other people with disabilities. I would not notice discrimination if I weren't experiencing it.
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