The last few days I have been still. It is very hot in New York and I struggle to cope with the heat. Like it or not, I am part of an at risk group. I have multiple fancy apps on my phone that alert me about all sorts of things weather related. I even have special tones for particular weather alerts. Heat is in my nemesis. My autonomic system cannot adjust post spinal cord injury. I sweat little and my body just cooks as a result. This is dangerous and I am exceedingly cautious when venturing outside in the summer. I hate being still. I hate being trapped inside when temperatures soar into the 90s. I despise being tethered to any building or room that has air conditioning. And here is what bothers me the most: I feel vulnerable. I do not feel like I am in charge of my own life. As my son has observed, “Dad, for a paralyzed guy you sure do move around a lot”.
Since I have been sedentary the last three days my legs are tight as a drum. Movement is key for me. The less I move the tighter my legs become. In place of movement I have been thinking. I think a lot about disability as on hot days my body limits what I can do. The heat humbles me. When I am still my mind wanders. I worry about others who do not have the education, family support, and friendships that I have. I know too many people with a disability who live at or below the poverty line. I know that accessing appropriate social supports is difficult in the extreme and often involves humiliation rituals. On a day like today I bemoan the existence of disability. This thought is quickly dismissed for the next thought that pops into my mind is that I have been culturally hot wired to think disability is bad, something to be avoided. There is an element of truth in this. No one wants to have a disability. The corollary to this thought is the idea disabled people are the other; it is not me. That thought is deeply rooted. Thirty five years post paralysis I still wake up and think “What is that wheelchair doing in my room”. When this happens I laugh at myself and get on with my day. But that thought still exists in my brain and it is a big problem. It is not a problem for me but for every person with a disability. Disability in whatever form it takes is framed as having a negative impact on one’s life. This is wildly wrong and I go back to the mantra: disability is a social malady. Sure we people with a disability have different sorts of physical and cognitive deficits. In fact we people with a disability have always been present in the evolution of humankind. The evidence for this is rock solid. Talk to any archeologist and he or she will say the same thing, We humans are masters of adaptation. Disability is a very visible form of adaptation.
The core issue is that we people with a disability are hopelessly fragmented. I remind myself that we have not yet created a broad based movement. Yes, many disability related organizations exist. And yes they are active and doing the best they can in face of stiff opposition. But the disability rights movement has not just stalled it has come to a dead halt. ADAPT protests once cutting edge have become stale, predictable, and are completely ignored by the mainstream press. Assisted suicide legislation is gaining traction. Concepts such as post birth abortion, medical futility, medical conditions deemed incompatible with life abound and are discussed in and outside of the Ivory Tower. These are perilous times for people with a disability.
Okay the above is ominous. My mind is filled with doom and gloom. I tell myself to stop. We can do something. If humanity is capable of one thing it is change and change we must. Lives are at stake. This hit me like a brick today when I read Claire Roy’s post today at Life with a Severely Disabled Child. See http://severedisabilitykid.blogspot.com/2013/06/there-but-for-grace-of-god.html In There but for the Grace of God… Roy opening sentence stunned me:“I think that parents of kids with severe disabilities are the only parents in the known Universe who pray for their kid(s) to die before they do...or at the same time as they do.” This sent a chill down my spine. Roy teasingly calls people like me, scholars and activists fighting for disability rights, cognates. When I read Roy’s post I thought I have failed. I have failed to persuade people inside and outside the scholarly community that all people with a disability share a common bond. The bias and bigotry we encounter is radically different but the root cause is the same. Roy writes about her daughter Sophie’s future. She worries about what would happen if she lived in a group home. I worry what will happen if I get sick. Will some physician I have never met think I have suffered enough and allow me to die? Neither my concern or Roy’s are far fetched. In the state of New York one in five residents of group homes dies under mysterious circumstances. What no one wants to address is why does this happen. Why do people like Roy and myself worry? We worry because we know the system grinds us down a millimeter at a time. We are ground down at a glacial pace. On bad like today I think the system was created to crush people with a disability. On good days I am excited to part of the largest minority group in the nation. I want to go out into the world and make it better. Reality is somewhere in between these polar opposites. Roy wrote:
It's a harsh climate folks: requires a thick skin, strong mind and body. I am damn lucky where others are not...and for them, things fall apart very quickly in the land of disability. Often, the kid with the challenges becomes the proverbial, if not literal, punching bag.
Is this any excuse, in the end? No, not an excuse, but a big picture perspective. That's all I'm trying to say. We are no more amazing or inspirational or capable of doing this job than anyone else, platitudes about God and plates be damned. We are just people, people who are products of a society that does not know what to do, really, with the "problem" of disability. We are the ones who have to break all the rules and come up with new ones, and we don't always have what it takes to do so.
And that's why, in the end, it's the whole of society that has to change and embrace the reality of disability, so that good parents for kids with disabilities will be born instead of wrought...and over-wrought.
I envy Roy’s passionate writing skills. For better or worse, I am about as subtle as a brick thrown through a plate glass window. A friend one teased me that I piss people off in an unconventional way. This assessment is correct. It is why I quoted the above words by Roy. We simply do not know what to do with the “problem” of disability. In a world of tweets, email, sound bites on the news, and Facebook posts disability is ill suited for superficial analysis. To get disability requires time, energy, and restructuring all of what one was taught. Many feelings are going to get hurt if we people with a disability are ever going to become equal and free of bigotry. People who have dedicated much time and effort to support people with a disability will be hurt. That is those that have worked hard within a charity model of disability will be offended by the civil rights approach. Researchers who dedicate their careers to cures for a host of conditions will be hurt (people like those involved in the exoskeleton or stem cell treatments). It pains me to know my words hurt others. I lose sleep over this. But like Roy I have developed a thick skin. More importantly lives are at stake. Here in the United States, and to a larger extent in Britain, people with a disability are under assault. The so called social safety net is being dismantled by the far Right and Tea Party extremists. This is framed in strange and despicable ways. Read what Rick Santorium has written about the United Nations Convention on the Rights of Persons with Disabilities if you doubt me. Nothing he has stated is close to the truth. See http://www.thedailybeast.com/articles/2012/12/05/santorum-un-disabilities-treaty-would-ve-had-bureaucrats-unseat-parents.html
Take a good look at how Santorum had his child Bella in the background and used her as a political prop. I see this picture and seethe with rage. My rage is not about me. It is about all others—any other with a disability who encounters needless bigotry.
The above is in a way a plea. A plea to all those with and without a disability who want to help create a social revolution. As Roy noted we need to look at the big picture. Changing the big picture requires lots of people if not the vast majority of the population. But I believe in change. History has repeatedly demonstrated that mass movements and civil disobedience can create rapid social change. I consider Roy’s words forward thinking and this cognate crip considers her a fellow soldier happy and willing to fight the good fight. I just hope we do not go down in flames and will harken to the past and the famous line uttered during the Apollo ixii crisis: failure is not an option.
>>Researchers who dedicate their careers to cures for a host of conditions will be hurt (people like those involved in the exoskeleton or stem cell treatments).<<
Can you expand on this? Why would researchers be hurt? Are you suggesting that if the built environment and society's attitudes toward PWDs were inclusive that there would be no cause for developing treatments, therapies, and cures for the array of disabilities present?
I think the issue with research that aims to "better" the lives of PWD is that there is an underlying assumption that disability must be fixed. My child has Down syndrome. When I read about the latest scientific advances in understanding what about the extra chromosome may lead to ID/DD, part of me is glad that someone is bothering to care, but another part of me understands in a very painful way that the ultimate goal of this research is to find ways to treat my child because it is not OK for him to be different. I have to wonder, if that same zeal were applied to recreating our collective dialogue on disability, what kind of change could be possible?
Thank you for writing this. It gives me hope.
Yes, yes, yes and more yes. I went through that hurt when I found out my daughter had Ds (prenatal) and I am survived. It's never comfortable to look at hard truths about ones own bias but it has to be done.
“For the master’s tools will never dismantle the master’s house. They may allow us to temporarily beat him at his own game, but they will never enable us to bring about genuine change. Racism and homophobia are real conditions of all our lives in this place and time. I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives here. See whose face it wears. Then the personal as the political can begin to illuminate all our choices.”
― Audre Lorde
This is exactly what I constantly struggle with - to ruffle feathers and fight to first challenge and then change the ableist rhetoric without hurting feelings to such an extent that it works against my efforts. Some days i think I might be doing well, some days not so much.
Most days I'm just happy to know that I'm not alone in this. Thank you for writing this post.
Stephen, As you know I am severely critical of contemporary rehab culture. In my opinion researchers that promote questionable devices such as the exoskeleton are profiteers. Worse, they are sponging off the Department of Defense that came up with the idea of the exoskeleton to aid in our never ending war on terrorism. No peer reviewed medical journal to my knowledge has stated there are any physiological benefits to the exoskeleton. Correct me if I am wrong. Direct me to peer review journals. As for stem cells, yes this research shows promise. Perhaps in two, three, or more decades it will be affordable (covered by insurance) and practical. The point is I am a practical man. I want to see this country and others around the world to perceive disability for what it is. A physical or cognitive deficit. We can adapt to any of these deficits but refuse to do. I do not see disability as a "problem" in need of repair. I see our society use disability to exclude, stigmatize and exclude people. I would highly recommend you read a new book I just finished. A Disability History of the United States by Kim Nielsen. The fact is disability has and will always be present. Disability is not the problem. Disability is a problem because society makes it a problem. Stigma is socially constructed as is ableism.
Jisun, Yes, disability fixes abound and that is the problem! There is hope. Always there is hope. It is what makes we humans wonderful.
Ginger, Prenatal care and fertility work is deeply troubling to me. If a DS is identified over 95% of pregnancies are terminated. Does a woman today really have a choice when informed about DS? Technically yes but it is a hard road to traverse.
Extranjera. Yes knowing where the line is exceedingly difficult. If you get too angry people will dismiss you. If you are too polite, people will walk all over you. Real social skills are needed.
Bill -- I'm reminded of what Tip O'Neill said many years ago: "All politics is local." This is true for all types of advocacy. What Tip meant, I think, is that the advocate/politician always must remember that the biggest picture is really the smallest: Whatever the problem is that's being "solved" must work at the smallest local level. If the solution doesn't help the "you" in the picture, it doesn't matter who else or how many others it might help. That's the frustrating part of advocacy: it's so easy to get caught up in trying to change the big picture, and meanwhile that one individual, with that one unaddressed challenge, is still waiting and wondering "when is it my turn?"
Thanks for writing this. I know it isn't easy to keep the faith...
You have bought me to tears. I know on really hot days and really cold days that there are people most likely in my own area who are really suffering because of the loss of temperature control. For Don and I , well we had each other and he knew I would never leave him...as well he got a settlement when he was injured so we could just about afford cooling and heating but as with you we stayed home on hot days... the one time when I couldn't get there as they wouldn't allow me to travel down on the plane with him - that was the time when he was butchered by bastards who judged his life worth less and didn't bother to take care...sometimes I would lock into his eyes when he was in that horrible place and we both knew he wasn't going to make it - and I know how terrified and horrified he was by his lack of control when he first arrived at the place...I have found too in Australia that the disability Advocacy groups have become part of the problem. The magazines which used to so members out there with placards and agitating for rights now are filled with glossy stories about some Quadriplegic and his brother travelling in Europe - what a feat. And glossy adds for fancy vans not too many can afford.
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