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, September 12, 2013
Disability as Disaster
The video is entitled "From One Second to the Next". Texting and driving is dangerous. I tried it once and almost killed myself. I never attempted to text while driving again. I get the need for this sort of video. In fact it has been viewed over two million times. I assume it is widely shown in high-school and colleges across the nation. This age group are utterly dependent upon texting. I get this too. If I want to talk to my son I text him please answer the phone. So yes this video is very much needed.
The first personal story clearly fits into a badly dated disability as tragedy genre. I had hoped that after 40 years of progressive legislation designed to empower people with disabilities a video such as this one would be a thing of the past. Sadly though, the pity/trajedy model of disability still resonates. I do not feel sorry for the mother or her son X. In much the same way, I hope no one feels sorry for me. I surely wish her son never experienced a severe spinal cord injury. I can say the same about any person that damages their spinal cord. But accidents happen--horrible life changing accidents happen. I truly wish the young boy X was not paralyzed. I simply wish the story could have been framed differently. I cringed when I heard the mother state "his legs are gone, his wheelchair are his legs". I also cringed when she stated her son is "on life support" and she cannot tell her son "go in the yard and play".
At issue is how the story is told. It is designed to put the fear of God into the hearts of parents. It is designed to scare young people too. For what is the worst case scenario? A severe disability. What is the worst disability one could have? Living on "life support". This mother is absolutely correct about one thing: when it comes to disability "everything is a production". This both true and false. It is true that spontaniety is often impossible when one is disabled. The "production" in life for a person with a disability exists on a sliding scale. For a person such as myself who is independent the "production" process is minimal. It takes me longer to do mundane tasks and as most people with an injury comparable to mine this limits what can be accomplished in a given day. Everything being a production is false in most instances. People do not ask the all important why? When I am out and about the why figures into a social and physical environment designed for people who are bipedal. Wheelchair access is simply not valued. Ramps are often perceived as an eye sore and located in the back of buildings. Access often involves entering a remote and hard to find door. As a result, I have seen the worst parts of some of the best buildings in New York City. Elevators are often turned off. Wheelchair lifts are often used to store garbage. The list of violations are long. The root cause however is the same: access is not valued. This creates a destructive vortex. Businesses spend a great deal of money to make buildings accessible. This is not done by choice but to comply with the law. So when the wheelchair lift is not used or the accessible entrance in the back is rusted shut people get mad and think money was wasted. Again, no one asks the question why. Why is the lift or elevator not used? Well in my experience a locked elevator or locked wheelchair lift is a waste of money and useless.
Let me provide one example. The sandwich food chain Cosi is an access nightmare. The look they prefer involves tables at the entrance and a sandwich making station at a higher level up about four to eight stairs. In the Cosi stores I have been in often have a wheelchair lift. Great. Not so fast. In every Cosi store I have been in the wheelchair lift is locked. Only the manager has the key. Most stores use the lift as storage for either trash or surplus supplies. When I ask for the wheelchair lift to be cleared I instantly become a pain in the ass customer. I have even seen more than one wheelchair lift purposely rendered in operative by breaking the key in the off position.
The point I am trying to get at is that I wish this mother and her son well. But they need to rethink life and how they fit in it. Yes, everything is indeed a major production for this mom and her son. Life as a vent dependent quad is not easy. It is in reality hard and expensive. Some might say the same thing about me. People often comment about what a hassle it is for me to get my wheelchair in and out of my car. What choice do I have? None. And frankly I have never thought of this mundane activity as anything but, well, a mundane activity. It is not a blip on my radar. What is very much on my radar is the refusal of bipedal people to accommodate what the ADA deems "reasonable accommodations". This too is what I want this mother and her son to learn. The people who often determine what is and is not a reasonable accommodation know nothing about disability. To return to the example of the Cosi food chain, I am sure the corporation that required its stores to have a wheelchair lifts were meeting the letter of the law. I bet an executive may have even thought it is not just a legal requirement but the right thing to do. The failure here is not physical but rather social. No one values those wheelchair lifts. At a fundamental level this is deeply entrenched. Culturally we believe that a choice is involved as to when, where, and how much will be spent on making a building accessible. This is false. The law is very clear.
I find videos such as the one above counter productive. The take away message is not just texting and driving is dangerous. The message the mother effectively delivers is disability is inherently bad. Disability is a tragedy. I consider this message to be as deadly as text messaging while driving. Thus yet another opportunity was lost. This has been a recurring theme for decades and as a result social progress in terms of disability proceeds at a glacial pace.
Posted by william Peace at 2:05 PM
PhD 1992 in anthropology Columbia University, I am interested in disability rights and bioethics.
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As I was watching the video, I found myself wondering whether the ways in which people talk about disability are influenced by the ways in which they or their loved ones acquire a disability in the first place. In the case of X, the disability occurred through the inattention and negligence of another person and it happened in full view of his sibling. So I wonder whether the trauma of both of those things doesn't play into the ways in which X's mom sees disability as a traumatic event. I'm also thinking that because X is African-American, his mother is seeing a whole other level of bullshit he has to deal with now. Young black men are already vulnerable to racist violence; young disabled black men are vulnerable to racism and disability hatred. So while the framing of the video leaves a lot to be desired, I didn't see the usual self-pity in this one; I just saw people whose already vulnerable loved one was basically assaulted with a car, and that perhaps a great deal of the sorrow and trauma language had to do with that.
Rachel, Outstanding observations.
Dude, seriously? You are apparently a pretty independent paraplegic. Do you think that is anything like living on a ventilator, totally dependent on others for everything, including taking a breath? Do you thin the loss of your 3 young children compares to an inoperable wheelchair lift? Try living any sort of quality life with no memory, double vision, no independence. 5 people dead, 2 permanently disabled all due to the irresponsible and preventable acts of self involved strangers and you on't like the way the message is presented? I guess life holds no lessons for you, as long as you can get your sandwich without being seen as a pain in the ass. I am a spinal cord injured quadriplegic, due to circumstances I created. I don't feel sorry for myself, nor do I want other people's pity. I do feel sorry for you.
As a professional driver, I almost never take jobs which involve having to be driven around by others, because I find that professional drivers (especially car drivers) are reckless; in particular, they drive too fast, they cut corners and they do stupid things like using mobile phones and texting while they drive. Both these things are completely illegal in the UK and you can get fined and a fourth offence typically means you get a driving ban. These past two weeks I've been working for a car auction company, and have had to put up with this behaviour almost every day and there have been a few near-misses because of it.
Over here public information videos tend to concentrate on the immediate aftermath of the accident, or showing slowed-down car crashes so you see the heads smashing into windscreens or flapping with the force of the impact, and blood flowing and then people crying and engines smoking. The implication is that people are going to be very badly hurt even if they survive. I've not seen a video over here yet that shows a disabled car-crash survivor and makes their disability out to be a tragedy. It's hard to say that either type of film (or any other public campaign) is that effective when using mobiles while driving is still extremely common, and even professional drivers do it when their jobs depend on keeping their licence.
Also, don't forget that it's not about disability per se, but inflicting that on someone. Regardless of whether disability is really a matter of social barriers (which in the case of severe brain injuries, it isn't), if you text and drive and cause an accident and paralyse someone, you're the reason they can't access a bus or a building. I know some people do sports that could cause them a lasting injury (rugby, skydiving etc) but they accept that and sometimes the danger is part of the thrill; when you set out to drive to work or the shops, you don't accept that you'll end up paralysed on a ventilator, just so some idiot could text his girlfriend or his boss rather than waiting to find a place to pull over.
Alissa, I assumed I would get a critical comment such as yours. Of course there is a profound difference between a vent dependent quad and myself, an independent paraplegic. And yes the death of a human being in a text related accident is terrible. But comparative suffering has nothing to do with the point I was trying to make. Disability was in the video used as tragedy. The societal discrimination people with a disability experience is unacceptable. The video compounds disability based discrimination. Let me put it another way: if you pity a person such as the young man in the film or for that matter me would you as an employer ever hire him? In a word no. When many see a person with a disability pity comes to mind as does all that a person cannot do. In contrast, when I see a person with a disability I think of all the things he or she can do. So when I see that young man i think engineer, computer scientist, and countless other avenues of employment.
Matthew, Your comment is well taken especially since you are a professional driver. A friend suggested a phone should be disabled while in a car. This would undoubtedly save lives though it is not practical. I am not sure severe fines are a deterrent. I do like the idea of graphic videos post car wrecks. The anti smoking lobby has put graphic images on cigarette packages. No idea if this works. I am not sure it really matters how one becomes disabled. I suppose my concern is strictly post disability life. Finally, I always appreciate your comments. Over the years I have come to look forward to reading what you write.
William, while I agree with you that societal discrimination is unacceptable, sustaining a permanent disabling condition in any manner IS TRAGIC! How one deals with the aftermath is really a much different topic than wht was covered in the video. Yes, that boy can grow up to do many wonderful and important things. The later with severe brain injury will not, as with the 5 promising lives cut short.
The video is a public service to improve awareness specifically regarding the dangers of texting while driving. Would you have preferred seeing the victims' going about their lives as if nothing had changed? The message then might have been construed as: go ahead & text while you drive - those innocent bodies affected forever will eventually adapt, get on with life and everything will work out for the best. Your selfi- centered little bubble is still intact, proceed with impunity.
I did breathe a sigh of relief reading your piece on this. I saw this video the day it came out, and was upset by the words of X's mother.
My brother has a brain injury as a result of an accident. The person he was is gone. Neither our father or his brother can accept that, and still mourn the person he used to be and the insult to THEIR lives. This doesn't help my brother at all. It causes him additional pain he doesn't need. There is nothing HE can do in the present to change the past!
Yes, there are nuances, and I do appreciate the fact that this video was made, even if it was clumsy in the extreme, and perhaps the fact that folks can talk about their feelings about X and his mother is good. . .in addition to my own disability and my brother's, my mother was killed as a result of a car accident. I was told it was "both driver's faults or no one's fault." No one was paying close attention. Uh boy. I saw a car with two people in it almost hit another car as I was looking out my window this week. The driver was on the phone. So was the passenger. It could barely believe it.
So, hmm. . .in this case, I am rather leaning towards appealing to people's worst fears. I am not proud of that.
I don't think phones should be disabled while in a car, because any device that would do that would disable them for passengers as well, and quite possibly people just outside the car, which would make them almost useless. There are hands-free devices that you can use to answer calls when driving, and some cars have Bluetooth receivers built in that you can use, although if you're only using the car once, there's not much point doing that. It's one of those things that you can try to educate people about but you won't totally get rid of, much like smoking which has never quite gone away. However, drinking and driving has become highly socially unacceptable since the 1980s, even among the young, so there's every reason to think that educating the public will work here too.
Alissa, Sustaining a spinal cord injury is life changing. The same can be said for any acquired disability throughout the life cycle. To me, the "tragedy" is entirely social. More specifically, the persistent and rampant disability based discrimination. Most people with a disability live at or below the poverty line. Mass transportation, housing and employment are inherently difficult. This is unacceptable. To consider disability a tragic event is to buy into ableist beliefs. That is the only means of navigating the world is to use two feet and have a typical body and mind. I only see potential in the human capacity to evolve and adapt when disability enters one's life. We humans are good at adapting and have been doing it for millions of years. Framing disability as tragedy isolates and undermines the ability of people with a disability to lead rich and full lives. This requires a leap in logic you appear unwilling to make.
Julie, This video was obviously well intentioned. I refuse to critique the mother despite the fact her words make me cringe. She loves her son and that shines through. Like the people who made this video her intentions were good. The end result is unfortunate. Traumatic brain injury is difficult in the extreme. And sadly many families struggle to accept the fact pre TBI and post TBI individuals are in many cases radically different people. This population really struggles and receives far too little social supports.
Matthew, I have blue tooth and voice command for my cell phone in the car. I still find this distracting if not dangerous. I only speak on the phone if I am on a straight and isolated section of the inter-state. I think you are in a far superior position to evaluate what can and cannot be done r.e. the car and distracted driver.
William, I clearly stated that the act of acquiring a disability is a tragedy (in different words). I also stated that "dealing with the aftermath" is an entirely different story. While you fail to see my ability to grasp your leap of logic, I fail to see any objectivity in your perspective of life after a disabling event. I agree, once again, that societal discrimination is rampant and unacceptable, and adds to our struggles of living life to the fullest with a disability. Life for an independent paraplegic is very different - and I hate to say slightly less challenging than being a higher injury or TBI where you are entirely dependent on other s for every aspect of living life, from breathing to dressing to eliminating waste.
Regardless, I believe your use of this particular video to prove some anthropological point is totally missing the mark. Awareness and prevention should be on the top of the list to reduce unnecessary disabling injuries. To me, that is much more important than the grief of a mother, sister, family member being displayed iwith a more positive outlook for a quality of life that may never be achievable.
I have an incredible life, face many barriers and bad attitudes, but I don't sit here and pick apart the reaction of strangers to my disability. And while I continue to live my life as fully as possible, I would still welcome a cure any day!
Over and over again, I want to yell what Rodney King said, "Why can't we just get along?!"
I've read Disability RIghts Bastard's blog post about the rifts between, well, us.
I'm increasingly convinced this all serves the power elite very well. Those of us who are disempowered or marginalized fight amongst ourselves instead of against that which we ought to be fighting for. We fight for small slices of an increasingly small pie. Additionally, having the underclass under stress serves well to inure us to the state of perpetual war and our country's sadism to others. Do unto us badly, but we are doing unto others even worse.
This i not a critcism of this blog, btw. I want to read/listen and find common ground. I hope I am not a part of the shouting match.
I think that it's very difficult to use disabled people in a PSA like this one without erring on one side of the other. Either you use the pity/tragedy angle to get the point across, or you show a balanced view and then you can't make your point at all. The point is to scare people straight, and the problem lies in the fact that they chose to use living people to make a point like that; I find that really upsetting for reasons that are difficult for me to express. I suppose the closest I can come is to say that it felt exploitative of the disabled people involved. They were being observed and talked about, not talked to.
The only segment that I found effective was the one about the young man who ran into the Amish buggy. You never saw the people he killed on camera or their families for any length of time; there might have been a brief photo of them, but that was all. I found that more respectful. I think that the point can be made that texting is dangerous by showing the loss of life involved (sans the gory photos). I'm not sure it's necessary to bring in disability to make the point.
I have a built-in prejudice in favor of the video because last year, I very nearly got hit by a driver who never saw me crossing the street directly in front of him. I was just a few feet away from his front bumper before I jumped out of the way, and he never saw me there at all. I assume he was texting or talking on his phone. If I'd had less mobility, I'd be dead. So I really want to see PSAs like this one, but in a way that's respectful to the people involved.
Alissa, I am by no means objective. Within my field, I would be deemed an engaged anthropologist. My overwhelming interest is disability based discrimination. I find our exchange frustrating because we are no communicating effectively. I reject the concept of comparative suffering that you appear to rely upon. All people with a disability encounter bias and the root cause is the same. Thus I advocate on behalf of all people with a disability. My effort to defend and enhance the civil rights of people with a disability is not exclusive of a quest for cures to disability. I merely have no interest in cure and deplore pity mongering used to raise money for cure. This is effective for money raising but inherently destructive.
Julie, I totally get your comment. Political solidarity has proven to be illusive for people with a disability. Without such cohesion we will never become a vibrant political force. Part of this involves the persistence of a medical model of disability. Another part is funding or financial. A lack of education and lack of employment is yet another obstacle. Some days the idea of forming an effective political coalition seems light years away.
Rache, I agree with your comment r.e. the young man that hit the buggy. His angst was obvious and his pain very real. And this was done without exploitation. These PSA are important. Many are effective but not this one. I wish I had a suggestion as to how this could be done better. Texting and driving is a very real and dangerous problem.
I wish that some day the ridiculous notion that "objectivity" is the highest state of intellectual reasoning comes to an end. To be unmoved by human suffering is not rational.
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