Since class ended last week I have been trying to lay low. I do my best to avoid social interaction but sometimes I need to do the ordinary. Exciting stuff like grocery shopping, an odd trip to the post office or library, maybe even eat lunch out. When I do this I am a target of opportunity. This is ever present and has been for over three decades. However the intrusion in my space and forced "help" is a real problem as Christmas approaches. I have read other people with a disability express similar sentiments. Dominick Evans recently wrote "Don't Just Say Hi to Me... Just Fuck off Instead". Link: http://www.dominickevans.com/2015/12/dont-just-say-hi-to-me-just-fuck-off-instead/ Written in response to an ill advised add campaign by the Cerebral Palsy Foundation (Just Say Hi) Evans wrote the problem is not getting non disabled others to say hi but rather makes people go away. He concluded his post in a way that reassured me I am not the only one being harassed:
I am not here for you to be inspired by me. I am not here to make you feel better about yourself. I’m here because I’m a human being just like everyone else. So next time you approach me, or any of my friends with disabilities, don’t say hi, unless you would say hi to everyone else around you. You don’t know what I’m going through, where I’m going, or even if I want to talk to you. If you wouldn’t say hi to a non-disabled person, don’t say hi to me. Instead, just fuck off, because frankly that’s the way the majority of people would act around anyone else.
The bottom line is that people with a visible disability lose the ability to be anonymous. I always stick out. I stick out when I attend an academic conference. I stick out when I park my car. I stick out when I navigate my way through an airport and on and off a plane. I stick out when I eat at a diner. I stick everywhere because the world was built for bipedal people. My existence and the space I take up is out of the norm. The ignorant people I am forced to deal with have no clue what my life is like. When they meet me it is singularly unusual. My existence prompts a social response that typically involves rude condescending behavior. I have no privacy. None. Strangers feel free to ask any question that pops into their mind. These questions are typically inappropriate. A common conversation starter involves a stranger asking "Why do you use a wheelchair? or "what happened to you?" or "can you have sex?". The list of intrusive questions is a long one indeed. Some might think people are just trying to be nice. Wrong. I second Evans fuck off.
Evans is not alone nor am I. At Crippled Scholar I read "In Defense of the Radical Idea of Letting Disabled People Exist in Public Without Comment". Link: https://crippledscholar.wordpress.com/2015/12/14/in-defense-of-the-radical-idea-of-letting-disabled-people-exist-in-public-without-comment/ People with typical bodies do not get it. There is a cultural divide between people who are typical bipedal humans and those of us with a profoundly different body who navigate the world differently. For me, my difference is using a wheelchair. For others it might be a person who is blind and forms a guide dog team. For those who are deaf, it is the use of ASL. Our difference makes us a target. We are not mere mortals. We represent every other person with a similar disability. I do not speak for myself, I speak for all people who use a wheelchair. What bipeds do not remotely understand is how inappropriate intrusive questions are because they are inherently dehumanizing. Crippled Scholar wrote "These interactions are entirely fixated around the fact that I am disabled. They have nothing to do with me as a person". This line was followed by:
The fact that disabled people are not seen as being entitled to personal privacy. The fact that our bodies deviate from the norm seems to give people the idea that their have the right to ask us probing questions and they don't take refusal very well. Perhaps this is why Evans says that despite his dislike of these interactions, he tends to reply with a smile. In my experience attempts to deflect just leads to more probing questions. An out right refusal to comply is met with shock and frustration. It is also in my experience leads to them backing down because as I mentioned these people feel entitled to my personal information. They usually respond by attempting to shame me by saying something alone the lines of I'm just trying to learn, don't you want people to be educated. The fact that have been trying to teach them that I have the right to exist in public without being accosted is inevitably lost on them.
There are over three million citizens in the United States 20% of whom have a disability. That leaves millions of citizens in need of a remedial education concerning disability rights issues. That is not going to happen if we rely on people being educated one by one. What is needed is a social revolution. Laws have failed to make a difference. They have failed not because they are inadequate but rather there is no social mandate to enforce them. I hear again and again about how the ADA is an unfunded mandate. I find this infuriating. The ADA is civil rights legislation. When I point this out people look at me with a quizzical expression. "Really, I had no idea" is the usual response. This also ends discussions as my point about civil rights requires thought. People cannot fall back on what they learned about disability. The idea civil rights and disability rights are one in the same undermines what most absorb and are taught about disability.
I have put great thought into how to respond to rude people and intrusive questions. Like Evans, I try not to engage. Rather than smiling I have mastered the placid look. I relax my facial features, remain silent, and am stoic as humanly possible. Think DMV employee like interest level. When I do not reply kindly and engage the responses can be swift and violent. I have had doors slammed in my face. I have had people scream at me that I was "a bitter ass hole". I get why Evans smiles. He is protecting himself. Unlike Crippled Scholar, in my experience people do not back down. Strangers insist on helping or get off on mere staring as though I am freak show. A few example should suffice. This week two people have grabbed by wheelchair when I was getting out to fill up my car with gas. A minor tug of war ensued. A more passive experience also took place this week. I was getting into my car when I noticed a man staring at me in the car parked next to me. I stopped my transfer and looked him in the eye. He lowered his window and told me "go on, I want to watch." I replied with a "You are rude. Stop staring." He replied "I have not seen how a wheelchair goes in the car. I am watching". I was mad at this point and said "The show is over. I will not get in my car until you leave or stop staring". This exchange is somewhat dangerous. As both Evans and Crippled Scholar pointed out it is not wise to refuse to engage with typical others curiosity. Such rejection is not taken well. Refusing to play the part of entertaining and meek cripple is unexpected.
I find it impossible to imagine that I am the only average crippled man in America who rejects a stigmatized identity. Evans and Crippled Scholar demonstrated I am not alone. That feeling warms my soul. Imagine a world in which we cripples could blurt out "your'e a dick" or"fuck off". Bipedal people's head would likely spin off their body. The shock would be palatable. Instead we are deemed to be "bitter", "angry", "uncooperative", "nasty", or have a "cripple's disposition". This is correct. I feel all these emotions when I am perceived to be less than human.
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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Friday, December 18, 2015
Micro Aggression's Rampant December Presence
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
Wednesday, December 16, 2015
The Demeaning Language Associated with Disability
Anti disability rhetoric abounds. Disability is inherently bad. Parents who have a child with a disability, often referred to as a special needs child, carry a heavy burden. Adults with a disability are characterized as suffering. Peace suffered a SCI. John Doe suffers from cerebral palsy. The disability itself is not of importance. Disability and the language used to describe disability is routinely negative. The type of writing is not relevant. The tabloid New York Post or the high brow Atlantic, New York Times, academic journals all use negative language when describing a person with a disability or a disability related issue. As I waited for dawn this morning, I read two stories that framed disability particularly badly. Both stories were published within twenty four hours of each other. I could have selected many other stories but the articles I will deconstruct were typical--one for mass media consumption the other solid reporting undermined by ableist language.
First, is typical British mass media trash framed as a feel good story about overcoming disability that fits squarely into "inspiration porn" (a term I do like to use because its shuts down nuanced discussion). The title itself is objectionable. "Cerebral Palsy Sufferer Tom, 23, Lands Full-time Job at Altrincham Supermarket--After 950 Rejections in Five Years". Linkhttp://altrincham.today/2015/12/14/cerebral-palsy-sufferer-lands-full-time-job-altrincham-supermarket-rejections-five-years/ When I read the title I assumed the article would be about disability based bigotry in the work force. No such luck. The article completely ignored all the questions I had expected to be raised. Why are people with a disability unemployed in such great numbers? Why was the man in question, Tom Stephens, rejected 950 times in the past five years? Instead of asking hard questions the article was a puff piece of overcoming on the part of a man who suffers from cerebral palsy. Tom "endured a fruitless search for employment". He did not encounter disability based bias. The plucky Tom "never gave up, but all those rejections really knocked my confidence". Who is credited with getting a job? An employment agency Ingenues. This agency let Tom attend a special eight week program involving three weeks of classroom based learning followed by four weeks on the job training. Tom was one of seven people with a disability to complete the program. The feedback from the store manager where Tom works has been "fantastic". Tom shows "great enthusiasm and willingness to learn". The condescending tone is sadly all too common when it comes to evaluating the work ethic of people with a disability. The article essentially pats Tom on the head for doing a good job. Clearly, Tom is highly unusual and is ever so special. This is ableism run amuck.
Second, and more disturbing, is a article in the Atlantic entitled "Nowhere to Go: The Housing Crisis Facing Americans with Disabilities"by senior correspondent Gillian B White. Link: http://www.theatlantic.com/business/archive/2015/12/renting-with-a-disability/420555/ I expect much more from the Atlantic. The language used in this article was deeply objectionable. The reporting was important. Anyone remotely familiar with disability knows three constructed obstacles derail the lives of many people with a disability: lack of accessible housing, access to mass transportation and unemployment. The article in question details the results of a Harvard University report that found 7 million renter households have a person with a disability. The lack of access is a problem that is going to get worse before it gets better in large part due to the fact the Baby Boomers are getting old and are aging into disability. Clearly sympathetic to the lack of accessible housing what's the problem? The language. Here are a few tidbits.
Mobility is "the most common challenge" associated with disability.
"Disability challenges" is referred to repeatedly.
Use of the words "confined to a wheelchair".
Use of "needs of residents", and "specific needs".
Disability "can worsen" with age.
Making apartments more "accessible isn't impossible".
There is no incentive to to make access a "priority".
There is no focus on the civil rights of people with a disability. There is only passing reference to the ADA and the law is framed as a quasi architectural compliance law rather than civil rights legislation. Thus in a "good" article on the lack of access the language used undermines the positive thrust. Lost is the fact that only 1% of rental housing is accessible for a person such as myself. In terms of the entire country the Northeast where I live has the least accessible housing. Many rentals are old and existing housing is typically cut up older housing into small apartments. Few single family homes are accessible. Even newer homes built after 2003 are largely inaccessible. Just 6% of new housing is accessible. I think this is an overly generous assessment. In Westchester I saw development after development go up in the post ADA era. None of the homes were accessible. Developers were creative in insuring a lack of accessible homes. Upon initial construction I saw ramps on a few houses. Buyers deemed accessible ramps an eye sore. These ramps were designed to be removed by builders yet the letter of the law was met. Once sold the ramps were quickly and easily removed as it was attached to the house with lag bolts.
What is lost when discussing accessible housing is that the features required to provide access to all benefit all people. Grab bars in the bathroom are good for elderly parents and make convenient towel racks. Raised electrical outlets make them easy to reach for all people. Ramps into a house are a delight when moving in or out. Ramps will please every service man who is lugging in a large heavy new appliance. Wider hallways make getting that appliance in a breeze. Wide doorways and halls reduce the need to paint as walls do not get beat up. Ramps will delight kids.
Few get or care about the above. Look at the comments following the Atlantic article. Providing accessible housing in minute proportions is acceptable. There is little need many contend. 5% is more than adequate. Think about this. You are moving to a town with 1,000 homes. If you need an accessible house 950 choices are eliminated. 95% of your friends who live in the same town live in inaccessible homes. Your social life just took a huge hit. How do you raise a child knowing that 95% of his or her friends live in an inaccessible house. You do not come across people with a disability because the vast majority of housing is inaccessible. I know this all too well. At this time of year many people have parties to celebrate the holiday season and New Year. I do not go to such parties because I am not invited. Virtually all my friends live in inaccessible homes. A few friends make custom ramps and go out of their way to be inclusive. I appreciate the effort but as I age I am increasingly resistant to using ramps that do not remotely comply to the ADA. I just cannot risk a bad fall. So as I age I become increasingly isolated. My ability to navigate the world diminishes due to the aging process. It is no wonder I dread the season of false good cheer.
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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