High-school Prom: A lesson in discrimination

I did not go to my high-school prom. I knew few people in high-school in large part because I spent most of those years in the hospital. As an adult when the subject of proms comes up I often see women cringe when they look at photographs of the dress they wore. Men shake their head over the bad haircuts, peach fuzz on chins and awkward poses. Some recall getting drunk. Others recall a sexual tryst. While high-school proms do not resonate for  me, I understand for many (perhaps most) it is a big deal. Thus I read with interest about a young man in Oregon who tried to go to his prom and was confronted with an inaccessible venue. Initially I was not impressed. When my son was in public school the administration was consistently hostile to any effort I made to be involved with my son's education that required a so called reasonable accommodation. For instance I was prevented from going on any field-trip because the school owned a single short accessible bus referred to by students as the "retard bus". My son was aghast at the suggestion this bus might be used. Thus when I read about the young man who encountered an inaccessible venue I thought this was business as usual. The articles I read were largely supportive and the comments nothing short of hateful. The primary goal seemed to be finding out who could be blamed for the so called mishap. See "Disabled Lake Oswego Senior Arrives for Prom but Can't Get In, http://www.oregonlive.com/lake-oswego/index.ssf/2013/05/lake_oswego_senior_arrives_for.html   

I have no interest in assessing blame. I refuse to play this classic American game. I do not care about who is to blame. I care about fixing the problem. The problem is the inclusion of this young man was an after thought at best, his existence singularly unusual and never to be repeated. I have encountered the situation this young man encountered many times in my life. People who suddenly notice a gross lack of access become upset. It is as though the lack of access never existed. Stupid ideas are suggested. Maybe we can lift him up a flight of steps? Great idea provided the person getting lifted is not dropped. And yes this has happened to me many times when I was young and dumb enough to allow people to carry me. The principal was upset and stated "we are trying to come up with any way he could be there". Far too little far too late. This young man's mother was furious. She expressed her fury to the school board and encouraged the school to find out what went wrong. It appears all agree the student had the right to attend the prom. Gee, how nice and liberal. A school official noted in a letter sent to parents "this is a mistake that never should have happened. We have a responsibility to provide accessible facilities for school functions, and we should have been aware of any limitations prior to leasing for this year's prom". I have three words for the school official: utter bull shit. Let me explain what the school official is really saying. We screwed up we are sorry. It was an isolated error. Osrry but this was no small mistake. It was a flagrant civil rights violation. The telling phrase is "we should have been aware of any limitations". I have heard this type of line dozens of time. What the official is really saying is we like the venue, it fits our budget. In the future we will make sure no pesky wheelchair users show up for the prom. If such a person is going to attend we need to know in advance. Only then will we search out accessible venues. If the pesky wheelchair user that insists on showing up, creating extra work, and selfishly draining the school budget is not liked or deemed a problem child an inaccessible venue will used. The only difference is the person will be notified in advance. Again, this was standard practice when my son was in public school. I sincerely doubt anything has changed in the last three years given the fact school budgets are increasingly limited. 

Most news reports state the school has been accommodating in the past. They also state the young man in question attended school dances and sporting events such as football games. These sort of statements are bizarre and remind me of a line I hate to hear directed at me--"It is so good to see you out". Is this student not supposed to go to football games and dances? Yes, the ordinary is impossible for us pesky crippled people. Wow, you can attend a dance! Wow, you can drive! Wow, you like sports! It is as though you are almost human. Bipedal people rule. Bipedal people have the power to decide when and under what circumstances the ever so special wheelchair user is permitted to show up. Of course this is ever so generous of the morally and physically superior bipedal hoards that rule the country. Sorry but no. The young man in question father stated sorry is not good enough. I agree. I do not want to hear sorry. I want to know the rock solid plan that is being devised to make sure this never happens again. Better yet, I want to hear about a group of parents that ban together like Mothers Against Drunk Driving (MADD) dedicated to making sure every prom in the United States is 100% accessible. But let's not stop there. Every prom will also have accessible transportation as well. When that happens I will know significant social progress has been made. I am hopeful we may have taken a tiny step forward. In Salem Representative Sara Gelser (D-Corvallis) a member of the National Council on Disability spoke about the incident.



I do not like the emotional tone but the positives of Gelser's short speech far outweigh any minor complaints about language. I was struck by one image though. The fact the young man ended up alone with his parents while all the other seniors danced away and had great fun. Imagine if the seniors, this young man's peer group, stopped--that is they refused to dance. Imagine if in mass they refused to participate in an event that was exclusionary. This would have been civil disobedience at its finest.  This could have made national headlines. What a wasted opportunity. Sorry, I am dreaming big today. 

Growth Attenuation, Intersex and Bodily Integrity

One of may favorite scholars is Alice Dreger. I find her work fascinating because it makes me think in a different way. Dreger studies and advocates on behalf of people with intersex conditions. I deeply admire her scholarship, advocacy and ability to enhance people's understanding of interesex conditions. As I understand it, intersex is the condition where an individual is born with biological features that are thought to be male and female. Sometimes referred to as ambiguous genitalia the history of people with intersex conditions is disturbing. Early sex assingnment surgery is the conventional response on the part of medical science. For far too long the ethics of such surgery was not questioned. Dreger also studied conjoined twins and standard medical care. Separation surgery was the norm because it was assumed conjoined twins could not lead a normal life. In her book, One of Us, Dreger clearly demonstrates conjoined twins can and have lived  full and rich lives. There are obvious parallels between Dreger's work and the history of disability. In fact the subtitle of One of Us is Conjoined Twins and the Future of Normal.  Normal here is meant in the context of how do we select medical treatments and use medical technology. I agree with Dreger that too many standard medical protocols cause as much damage as they help. Dreger wrote:

In the United States, the values of individualism, self-improvement, fee enterprise, and high-tech medicine have combined in the past few decades to create a culture in which one is able--indeed even expected--to employ medical technologies that alter one's anatomy and make it more socially advantageous".  

I think a connection between the past and present medical response to interex, conjoined twins, and those children who could potentially be subjected to growth attenuation can be established. By those children I am referring to young people with severe cognitive and physical deficits. I am prompted to make this connection by an article Dreger wrote "When to Do Surgery on a Child Born with Both Genitals" in the Atlantic. See: http://www.theatlantic.com/health/archive/2013/05/when-to-do-surgery-on-a-child-with-both-genitalia/275884/ I do not envy Dreger's effort to raise the level of understanding about intersex conditions. People accept without thought the stark dichotomy between male and female.  Two genders exist and much cultural effort is put into maintaining that stark dichotomy. In fact I would argue we celebrate and value the difference between men and women and in a myriad of ways seek to enhance that dichotomy. While this may work for the majority of the population, it provides the opportunity for medical science and technology to reinforce this dichotomy via questionable treatments such as sex reassignment surgery. In the Atlantic Dreger writes about a 16 month old foster child from South Carolina identified as M.C. who underwent surgery to correct ambiguous genitalia. The goal was to make M.C. genitals look more feminine. M.C. is now eight years old and identifies as a boy. His adoptive parents believe that the state was wrong to allow the surgery. They also argue doctors were wrong not to inform those making the decision on the part of M.C. that the surgery was not medically necessary. The parents recently filed a lawsuit on behalf of M.C. that alleges doctors "robbed M.C. not only of his healthy genital tissue but also of the opportunity to decide what should happen to his own body". When I read Dreger's article it took about a second begin thinking about parallels between the so called Ashley Treatment and sex reassignment surgery. While Dreger worries about how the court will respond, and she has a sound reason to be concerned, I wonder if the outcome of this case can be applied to growth attenuation. Dreger wrote

it will be interesting to see whether the courts agree with the plaintiff's lawyers that the 14th Amendment is at play here, and whether they will limit that Amendment's scope to cases where "a boy lost his penis." If, in fact, they understand the case as being an unfair situation in which "a child lost healthy genital tissue for no legitimate medical reason without fully informed consent," then the implications will be much broader, perhaps touching even on routine neonatal male circumcision.

I agree the implications could indeed pertain to male circumcision. However, I would speculate the possibilities are even wider in scope. Wider not in terms of the number of boys who may not be circumcised but in limiting radical procedures such as growth attenuation and sex reassignment surgery. Dreger concluded her essay noting that 

since M.C. was born -- major medical consensuses have moved away from the assumption that genital-normalizing surgery is required in all cases of intersex. This case is likely to drive surgeons to be even more hesitant to remove healthy genital tissue and healthy gonads from children like M.C. Ideally, the case will also lead more parents like Mark and Pam Crawford to understand that parenting sometimes involves forms of unpredictability that cannot, and even should not, be made to disappear.

I think any physician who is considering to radically alter a child's body would be extremely hesitant to make such a suggestion to parents. I think sex reassignment surgery, separation surgery with a very high mortality rate for conjoined twins, and growth attenuation all qualify as radical body alterations. I would also speculate children being considered for these radical procedures need to be protected by the fullest extent to the law. At minimum, such a child should be represented by a disinterested third party. I am not suggesting every surgical procedure performed on a child be subject to a legal review. Parents are given great latitude, as they should be, in making critically important health care decisions. However,  some radical procedures warrant an added level of child protection and advocacy.  I think the past and present use of sex reassignment surgery demonstrate this fact. Dreger noted that "many intersex women who had their clitorises surgically shortened in infancy are legitimately angry about having had tissue (and thus sensation) taken from them." Obviously the differences between the intersex and those with profound cognitive and physical deficits is significant. Yet I would suggest both populations have a right to their bodily integrity--they are afterall human beings born with the same rights as those reading these words. More generally I bemoan the fact medical technology is being used in ways that I think can be deemed ethically questionable. Radical surgery can not solve the social problems people who have an intersex condition will encounter. The same can be said for growth attenuation. Rendering a child small as Ashley X parents did may make her physically easier to care for but will not address the profound problems people with cognitive and physical deficits encounter (and by problems I mean shocking abuse and a gross lack of social supports). Hence I would conclude we, meaning all of us, need to do exactly what Dreger's subtitle suggested--reconsider what we deem normal. As one with an atypical body I think it is well past time to broaden our thinking and create a more inclusive society.  

Misplaced Outrage

I mocked the controversy created by the New York Post story about Disney Land. In case you missed it Wednesday Martin has alleged that wealthy Manhattan parents have hired people with a disability with the express purpose of eliminating waiting on line. The fact this story has prompted an extended amount of coverage bothers me. First, we are talking about the NY Post, a tabloid owned by Ruppert Murdock. Not exactly a paragon of journalism. But let's put this aside. Who is outraged? In my estimation people that know nothing about disability. The headlines are about what I expected:

Disney World Scam: Wealthy Moms Rent Disabled Guides to Skip Lines (and Shame Humankind)

How I scammed the Disney World Wheelchair Line System

Disney Probes Sleazy Riders

Disney World Scheme: Entitled Families Hire Disabled Guide to Bypass Lines, Says Report

Yeah No: Rich Manhattan Moms Allegedly Renting Disabled People to Skip Lines at Disney World

I thought this story would have a short shelf life. Now I am not so sure. CNN picked up the story and as expected all Florida based news outlets are discussing it. The fact is this is not news at all. People have been using this scam at Disneyand elsewhere for a long time. Thus this is a new twist on an old story with the perfect villain: uber wealthy Manhattanites. Damn those 1% parents and their children too!

When I read stories about disability scams I shrug. The outrage expressed puzzles me. I have had my civil rights violated in a myriad of ways. For instance, I have been refused entry to restaurants in New York City; no wheelchairs I am told. I have had many a taxi pass me by to pick up a bipedal customer. I have had bus drivers lie to me and say the lift is not working or that they do not know how to use it.  I have had rental companies assure me a car with hand controls is available only to find out the car is "lost" in transit. When such incidents take place non disabled people look away. I cannot recall anyone ever coming to my defense when I suffered gross inequities at let's say an airport. I cannot recall a single person that expressed outrage when I was being denigrated by someone who clearly held power. Hence, I shrug about Disney and the angst expressed. It is misplaced emotion. I wonder where are these people when the school board decides not to put a lift on a bus? Where are these people when the special education budget is cut? Where are these people when Mayor Bloomberg selected an inaccessible taxi of tomorrow? Where are these people when technology for people with a vision impairment is deemed too costly? Where are these people when a new facility is constructed but does not meet ADA requirements? Where are these people? Nowhere to be found and silent. This is bad, a terrible social dynamic. What people say and what people actually do is radically different. This is a giant social problem. Who is too blame? Me and everyone reading these words. This social failure reminds me of the classic film Cool Hand Luke. The brutal guard looks at Luke behind aviator sun glasses, hat pulled down low and states: "What we have here is a failure to communicate".

In addition to a stunning level of ignorance about disability in general, I have an additional concern. As noted in my previous post about the Disney is the emergence of able bodied outrage. Here I refer to a multitude of stories that question what I would classify as a reasonable accommodation for people with a disability. The most well known story about what a treat it is to have a disability pertains to airport security lines. More often than not, people with a disability do not wait on line. We are shuttled off to a different and shorter line. This is a reasonable accommodation and mitigates a multitude of different disabilities. People see this and think oh man you are so lucky. Well I do not feel lucky when I am the very first person on the plane and the very last person off the plane. I do not feel lucky when my wheelchair comes back from the belly of the plane and is damaged. I do not feel lucky when a supposedly trained person asks me to "walk just a little bit". This too is a reasonable accommodation one I find decidedly unreasonable

At issue for me is how do we raise the level of understanding. How do we get all people to think disability rights and civil rights are one in the same? Disability studies has been ineffectual. The disability rights movement has stagnated in recent years. ADAPT demonstrations are utterly ignored by the press. So how do we educate and make the bipedal masses see disability for what it really is? I have no clue. And that is problem number one.

Summer Work: Disney Here I Come

I love to read the New York Post. It is the epitome of tabloid journalism. The NY Post has no redeeming value aside from funny headlines and good coverage of my favorite hockey team, the NY Rangers. I am very careful not to read the news or what passes for the news. Today I was amused to read an "exclusive" article, "Rich Manhattan Moms Hire Handicapped Tour Guides so Kids Can Cut Lines at Disney World, by Tara Palmeri. The article is so dreadful and meaningless I refuse to provide a link. Just use your imagination--that is good enough for NY Post journalists. The article prompted my good friend friend Stephen Kuusisto to write a post on his wonderfully imaginative blog Planet of the Blind. Gawker, Jezebel and the Gothamist "reported" about the NY Post story. Better yet, Wednesday Martin, a social anthropologist discovered the scheme.  Martin has a new book out, Primates of Park Avenue, and works as a writer. She has a PhD in comparative literature from Yale University. How this makes her an anthropologist I am not so sure. But we are dealing with the NY Post, facts are optional. What I loved about this story is the effort to make it sound as though a lurid under ground economy exists. I am here to tell you yes we crippled men and women cheat. We steal. We manipulate. We are, in short, human beings. Oh, the horror!

The NY Post story had me on the floor laughing when I read about "black-market Disney guides" and the existence of a "rogue guide service". But wait there is more--yes, this service is available to only to  "Manhattan's private School set". The inside information is passed around in a "ritualistic manner". You cannot make this shit up. Investigative journalism in the world of Ruppert Murdock. We are doomed!  Now I could get ornery like my friend Steve Kuusisto did, (http://www.planet-of-the-blind.com/), and with good reason. Like Steve, I too am upset what he calls "able bodied outrage" over the myriad of perks we people with a disability supposedly enjoy. But not me, no sir, I am not mad, angry, or upset. I see an opportunity. The real question for me is do I want to react as a heartless capitalistic pig or as an outraged person with a disability. A third options exists too--have the Society for Disability Studies investigate the matter. The SDS meetings are going to be held--you guessed it--in Disney Land. Sorry, but I cannot help but keep on laughing. Let me explore the possibilities.

First, heartless capitalistic pig option. Dream Tours, identified as the "black marketers" charge $130 an hour and charge $1,040 for an eight hour day. I will undercut Dream Tours. I will put on my pathetic cripple costume and look particularly needy. But wait there is more! I will charge a flat fee of $1,000 and include free sun screen. But wait there is, you guessed it, even more. I will provide PBJ sandwiches and juice boxes. For medical emergencies we can use Disney's readily available epipen for bee stings. Bees love those juice boxes kiddies. Nothing but the best for tawny well heeled parents from Manhattan. Sorry, Nobu is a bit out of my realm of experience.  Just think how hungry you will be after eating nothing but a soggy PBJ like your maid made when you were little. 

Second, outraged cripple approach. This is not a money maker. Think of this as an Americanized Survivor episode minus the exotic location. I get to travel with the Manhattan family to Florida. We can wait and hope an Access A Ride bus shows up to take us all to JFK. Sorry no limos for the crippled. I fear NPR would broadcast yet another story about how disability is in reality a total scam. Upon arrival we hope the elevator works. A big if but today we are lucky.  We get to wait in line to hand off our luggage to friendly airport workers. Of course, none will speak with me because I have the cripple plague. After waiting in line for over an hour we make our way to the gate. The agent is of course is thrilled to see a crippled family member. We can observe the delighted gate agent spend 10 minutes entering obscure codes into the computer and inform us we will "pre-board". Needless to say this will not go well. The trained professionals that arrive late are disinterested, have no clue what they are doing, and do not speak a word of English. Overlooking these mere inconveniences, we board and then get to watch every single person exit the plane upon arrival and wait and wait and wait and wait... Um, and wait for similarly well trained employees to get off the plane. Of course this assumes my wheelchair was not damaged because the crew insisted it be stored in the belly of the plane. Somehow my privileged crippled status and multiple perks r.e. airport travel will not go over well.

Three, an investigation performed by the SDS. Oh God save me. First, we will need to organize a committee. The committee will create a panel discussion. 19,000 emails will exchanged by interested parties and posted on every listsev known to humankind. One year later the committee will reconvene to discuss the panels findings. The results are not conclusive. Another panel will be formed, papers presented and 29,000 emails exchanged. A new president of the SDS will take over and declare the approach used to date was ableist from a Foucaultian perspective. Yet another panel will be formed. More papers delivered, 39,000 emails will be exchanged. A report will be issued five years later. It is a wonderful report. By God, it is a publishable quality report that puts a dagger in the heart of social and economic inequality. Temple University Press is thrilled. The acquisition editor is thrilled. The report is edited by all parties involved and sent out for scholarly review. Two years later the reviews come back. This is important work. Editing is needed but we are good to go. The revisions take two years, warp speed in academia, and nearly a decade later the SDS weighs in. Disney should consider the symbolic significance of creating a line for people who have atypical bodies. This questionable policy could cause people unfamiliar with disability culture to resent the presence of the other.  The SDS implores Disney to reconsider their approach to difference.  Perhaps a committee could be formed. 

Satire, you gotta love it. Apologies to all.

Assisted Suicide in Vermont: I am Worried

It appears assisted suicide legislation will soon pass into law in the state of Vermont. The Vermont State Senate voted 17-13 to pass the Patient Choice at the End of Life Act. The bill will be sent to back to the House and Governor Peter Shumlin is expected to sign the bill into law. This news has created a buzz because Vermont will become the third state in the nation to pass such legislation.  Proponents of assisted suicide legislation surely consider this a great victory (Thaddeus Pope at Medical Futility was down right gleeful, see http://medicalfutility.blogspot.com/2013/05/vermont-to-legalize-aid-in-dying.html). Opponents of assisted suicide such as the Death with Dignity Center, Vermont Right to Life Committee, Second Thoughts and Not Dead Yet are disappointed.

I am not surprised this bill was passed into law. Vermont, a small rural state with a small population, is a cultural entity unto itself. I deeply admire Vermonters. I have spent a lot of time in Vermont since I started skiing. But I am not a Vermonter and this is an important fact. For some Vermonters being from a different state disqualifies me from stating an opinion pro or con about Vermont legislation.  I get his. I am a New Yorker, an outsider. My business via ski tourism is welcome but I should butt out of Vermonters business. I get this. I do not come across many Vermonters stating an opinion about New York legislation. Vermont embraces an especially tough rugged type of individualism. I get this. Americans of every stripe embrace and value individual freedom. We applaud independence and a strong work ethic. And wow do the people of Vermont work hard.  The Vermonters I have met and skied with are good people. The very best in fact. Vermont really has communities that work together in ways I admire. If you doubt me read about the response to the recent hurricanes. In the face of a natural disaster Vermonters went out of their way to help others and rebuild roads and bridges at warp speed.  

If Vermonters are so great why did they pass assisted suicide legislation that I consider potentially dangerous?  I would speculate Vermonters have embraced a type of individualism that does not permit them to think about vulnerable populations and the risks they can encounter. I get this. Vermonters are individuals and members of a strong and vibrant community. We will take care of our own. We will care for the sick, elderly and disabled. I contend not every person is part of a community in Vermont. There are socially isolated people who have no social connections. This is an afront to Vermonters. 

Again, I admire the individualism and work ethic of Vermonters. So let me appeal and provide a Vermont based example of the risks I worry about when it comes to assisted suicide legislation. Amanda Baggs has Autism. She lives in Burlington Vermont. As many have already detailed, Baggs was recently seriously ill and in need of having a JG Tube inserted.  This is an ordinary surgical procedure and in Baggs case would undoubtedly be life saving. Yet this is not what some Vermont doctors thought was was the best course of action. They pressured Baggs to consider the “alternative”. The “alternative” here was death. Thankfully Baggs experience generated a strong response on the part of the Autistic community in particular and the disability rights community in general.  I could state much more about the response to Baggs experience but I want to remain Vermont specific. Rachel Cohen-Rottenberg, until recently a resident of Vermont, and person with Autism wrote: 

There has been a great deal made lately of the so-called right to die — the right of terminally ill patients to obtain a lethal dose of medication in order to end their lives. Advocates for “death with dignity” believe that they can put enough safeguards in place to ensure that people are able to make a free and autonomous decision, protected from outside pressure at the hands of parties who do not have their best interests at heart. Under our current system, the very notion of this kind of autonomy is a dangerous myth. There can be no free and autonomous decision to die with dignity when people who want to live with dignity are not encouraged to live — when the very idea that they can live with dignity is not even on the radar of the doctor who walks into the room. Let’s face it: disabled people represent the failure of the medical profession to live up to the mythology our culture has built around it — that cures are right around the corner, that medical science is all powerful, that life can be made perfect and pain free, and that even death can be put off indefinitely. People with disabilities are an affront to a culture that idolizes the medical profession and assigns it all kinds of power it does not have. The myths by which we live fail abruptly in the presence of a person with disabilities, and doctors are no more immune from the power of those myths than anyone else.

For more by Rachel Cohen Rottenberg see: http://www.disabilityandrepresentation.com/author/admin/

Cohen-Rottenberg's last line is chilling—“doctors are no more immune from the power of those myths than anyone else”.  Until 2010 I refused to believe a physician could be so biased (yes, I was that naive). I revere education and knowledge and refused to believe such a physician could be grossly biased against a population of people. This is what education is all about—instilling the ability to reason, to see shades of gray in a black and white world, to notice subtle nuances, and be free of bias. One experience in a hospital late at night shattered that illusion for me. It was a soul crushing experience I tried to bury with all my heart and all my soul. See:http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=5905  My experience, Amanda Baggs and an unknown number of others is exactly why I am worried--it is why all people should be worried. Like it or not, vulnerable populations exist in every state. In every state where assisted suicide is legal vulnerable populations are at an increased risk. Proponents of assisted suicide legislation scoff my concerns. They quickly point out no abuse I worry about has ever taken place in Oregon and Washington. What these people fail to mention is that state required reporting accounts for not much more than the barest demographics of the person that ended their life. Under state required reporting my experience and Baggs experience would not come to light. In fact Baggs and I are lucky. We had family and friends. Yes, I am indeed worried. What happens to those who are isolated and alone? What happens to an elderly person that has outlived his family and friends? What happens to a terminally ill person who is all alone? What happens to those with severe disabilities--especially those with profound cognitive disabilities? What happens to a person with a severe mental illness? Who will support and protect these people?  I hope Vermonters will heed my words and think about these questions. 

A Unique if Not Gross Dog Story

If you do not like dogs, labrador retrievers in particular, stop reading. I am not joking. Last night I got a delivery of groceries (this my guilty pleasure). I emptied all the bags on my counter and started thinking of meals to prepare. I love to cook and have become adept at making small meal portions that I freeze. I am happy as I cook and listen to the radio with interest as to how the Mets will do. Matt Harvey was going to be pitching later and he is a budding star. I was making multiple meals. I made four fancy hamburgers. I doctored up pasta sauce with lots of onions and home made meatballs. I cooked up some beets and put fresh chives on them. I made a chicken and bean sprout dish. I am set for at least a week in terms of meals. Life is very good.

My black lab Kate loves it when I cook. I am a sloppy cook and nothing that falls on the floor is left to chance. Kate watches me like a hawk. The minute I move away from the stove top she rushes over to eat and lick the floor clean. Last night was no exception. Kate is thrilled when carrots, a bit of meat, an onion, celery or any food item hits the floor.  She is like a vacuum. I am cutting and chopping away when I notice Kate is even more interested in me than usual. She is laying down on all fours and starts to inch closer to me. Surely I am not going to notice. But this is out of the norm. I chalk her creeping towards me to the smells of garlic, onion and cooking meat. I ignore her until I realize she is directly under my wheelchair and licking the floor with gusto. Her unadulterated joy is palatable. However, inching under my wheelchair in the kitchen is not allowed. She only goes under my wheelchair when she is afraid or feels danger is nearby. Something is clearly going on. I did not drop a big piece of meat on the floor or make any other sort of spill that would cause such happiness on her part. I order her to move and I discover the source of her pleasure.  I scratched my toe agains the brick wall in my kitchen and am bleeding. I am bleeding a lot. Kate likes my blood.  Scratch that. Kate loves to lick my blood. It gives her unparalleled joy that is rivaled only by her second favorite thing to lick--cream, specifically aquaphor. What is a single cripple guy supposed to do? I need put a band aide on my toe and douse it with hydrogen peroxide. My skin and wound care kit is in my bathroom. I am still bleeding and will leave a blood trail I do not want to clean up. Then it dawns on me I need not worry. Kate will follow me all the way to the bathroom and clean the floor with joy and vigor.

My toe is fine and Kate appears no worse for the wear. I was a bit worried about her though. Licking up blood cannot be good for her but I put my mind at ease--she was her usual energetic self in the morning. Her tail was wagging away and she had love in her eyes. Her entire body was pulsing with energy and was dying for me to get up and play. What a great relationship I have with her. The bond we share is humbling. I am as devoted to her as she is to me. But I have a confession. Kate is a unique dog. Like me, she does not understand bipedal people. In fact she is terrified of steps, a fear that I find fascinating but understandable. Steps are not relevant to her life or mine. She also has no clue how to physically move around people that are bipedal. If a person is walking toward her she does not move. Not an inch. She expects a bipedal person to alter their direction. In contrast, Kate understands wheelchair movement. She knows exactly what to do once I move or any other person using a wheelchair moves. Although Kate is highly social, she prefers to interact with people that use a wheelchair. Line up a dozen people, one of whom uses a wheelchair, and she will go to that individual every time. She will put her chin on this person's thigh. This has led me to wonder about the bond I share with her. Am I closer to her than your typical, meaning bipedal, dog owner? Does she know I am different? If so, is she protective of me? Does she sense the social stigma associated with wheelchair use? Sadly, I will never know the answer to these questions. I will end with this thought as it is time to go outside with Kate and have some fun.

Critics of this Bad Cripple Take Note

Being a self-professed bad cripple does not endear me to everyone that runs across my blog. In fact I routinely get angry email and comments that borders on hate. I read these emails because they bother me. It has never been my intent to hurt others and I am often taken aback at how my words are misunderstood or why they prompt deep seeded anger. Regardless, my words have enraged some people and a friend once told me I piss people off in a nontraditional manner (a comment I am not sure how to take). Sometimes it is a specific post that incites angry replies; my analysis of the video Purple Feather posted in April 2011 still generates fury. Recently one reader commented:

Are you aware of what people with a disability have to live on. It's not much… Until you know anything about anyone who has to ask for help, I suggest you volunteer with the physically challenged. Learn about their life. See how they struggle to make ends meet… You have to be out of your fucking mind. I wish for you that you are incapacitated for the rest of your life (hit by a car, burned in a fire, shot in the spine… and then I'd love to see you begging on the street. I'd give you money and a very long speech on KARMA. Good luck to you. I hope you get that heart transplant that you desperately need. You're not a fucking idiot. You are cruel… When you actually learn what it's like to live with a disability then you should comment on these types of videos. Until that time. you should keep your thoughts to yourself.

Most angry email I get is associated with hot button issues. For instance, everything I have written about growth attenuation or the so called Ashley Treatment prompts a visceral response. I have gotten hundreds emails from people who rail against my opposition to growth attenuation. Suffice it to say, the email I get in this regard makes the comment above appear polite. Critical email often accuses me of not knowing anything about the subject I am discussing. In terms of growth attenuation this is partly correct. I have not raised a child with a cognitive and physical deficit and yet feel comfortable being a staunch opponent of growth attenuation. I try hard to reply to severely critical email in a neutral way. I defend my views and refuse to be baited into replying in anger.

One group of people who have consistently taken me to task are those with a spinal cord injury that have devoted much if not all their time to a cure for paralysis. I do not understand the fury that has been directed at me by those involved in what I call the cure industry or the Christopher Reeve School of Paralysis. When Reeve was injured in 1995 I grossly underestimated the impact he would have on the cultural perception of spinal cord injury. I have been severely critical of Reeve and once published a diatribe entitled “Wishing for Kryptonite” in the Ragged Edge. I will readily admit I have not been diplomatic in my criticism of Reeve and the cure industry. While I am no longer disturbed, the fact remains Reeve fundamentally altered the way spinal cord injury was perceived. Last year I wrote: Reeve cemented an antiquated perception of disability. Disability is a fate worse than death. It is a singular experience, a tragic experience. The "job" for all people with a spinal cord injury is to seek a cure to paralysis. No risk is too great. No procedure too risky. No amount of money is too much. No matter what the focus is always on walking. High tech medicine is embraced even if it is shockingly expensive and impractical. Think the exoskeleton. Reeve also helped establish the idea that if we cannot be cured today then our paralyzed bodies must be maintained in good working order. This is a full time job unto itself. It can require a staff of people as Reeve had. But it requires total dedication. A family, job, and social life is of secondary importance.

A singular focus on cure post spinal cord injury is hard for me to comprehend. Simply put, I have never perceived using a wheelchair as inherently inferior to bipedal locomotion. I do not compare my paralyzed body to a typical body. I do not bifurcate my life into pre and post injury. My utter lack of interest in a cure for paralysis was once commonplace. In the Christopher Reeve era, a belief in cure is increasingly common and is indicative of a significant cultural shift. When I was paralyzed my peers and I spoke of our future and railed against the stigma associated with our spoiled identity. Today, newly paralyzed people have no connection with old timers such as myself. Few know anything about the disability rights movement and I get a sense some expect to leave rehabilitation with a new adapted van and ADA accessible home. The lack of concern—what will I do now—worries me. Far too many people with a recent spinal cord injury make a Faustian bargain: they will focus on cure and if it does not come at some point in the future they will reevaluate their life. Too often this re-evaluation will be harsh and deadly.  Christina Symanski is a perfect example; her overwhelming negative assessment of life post spinal cord injury and decision to end her life by not eating and drinking is no longer unusual. I don’t get it. She wrote:

Unless you've been in my shoes, I have a hard time absorbing any justifications, or reasoning as to why I MUST, or SHOULD continue to suffer. I'm not just referring to "quadriplegics" in general. I'm talking about women, with high level complete spinal cord injuries, that are in their thirties, that were injured in their twenties, that have no children, that lost a career, that have IBS, and that suffer from daily bouts of autonomic dysreflexia. If you are one of the few people on the planet that fit in that category, by all means, share your insight, and advice on coping with me.  If you don't belong in my boat, please save your judgment, and just take a moment to think what you might do in my situation, and how you might want to be treated... Imagine needing to ask someone for every need; from scratching an itch, to brushing your teeth, to tying your shoes. I can guarantee you, from experience, that your worst fantasies, would not do justice, to the reality of actually living this way. I have lived on both sides of the fence, both as an able bodied adult, and as a disabled adult. I know exactly what I'm missing out on, and how much better life could be.

I too know life pre and post spinal cord injury. My life pre and post spinal cord injury have been wonderful. I have led a privileged life. Like any other person I have had my fair share of trials and tribulations. I was married and divorced, an experience I do not recommend. I had a severe skin wound in 2010 and spent almost a year in bed recovering (and many more months recovering from being in bed so long). On the positive side of the ledger I earned a PhD from Columbia University, have published widely, taught at the university level, and have had the great joy of being a father.  All in all life has been and continues to be sweet.

A cure to spinal cord injury was not relevant in 1978 when I was paralyzed nor is it important to me in 2013. For some, my lack of interest in a cure prompts anger. One of my most strident critics wrote that “I know your school, and have seen dozens of minds and spirits broken by it”. I am not really sure how I break spirits and minds by embracing an identity tied to disability and disability rights; however, this charge has been levied by others. Some comments have been very harsh. In one of my earliest posts circa October 2007, “Why Focus on Cure”, I questioned the larger significance of Christan Zaccagnino’s decision to go to China for a surgical procedure designed to cure or improve her functioning. Ms. Zaccagnino commented “I am mrs zaccagnino and you have no idea what you are talking about asshole.” Another person wrote: I pity you Bad Cripple. You preach equality for disabeled persons in wheelchairs and criticize Ms. Zaccagnino for her decision to think beyond her condition and strive for her dream of walking again. I walk on two legs and I dont consider myself Ms. Zaccagnino equal, because she is exceptional. I can only pray to have half her strength, perseverance and passion. Her will and positivity seem to be beyond what your acrimonious logic can comprehend. "Why focus on a cure?" because some are unwilling to accept anything less then their dreams. Shame on you to disparage those who dreams. Shame on you.

I remain perplexed by these comments. I have repeatedly stated a cure for spinal cord injury is a laudable goal. If a person wants to focus their life around a cure to spinal cord injury so be it. I have not nor will I ever comment on the current status of advances in the cure for spinal cord injury. People devoted to cure know far more than I ever will. But I do have the right to question and analyze the larger social significance of this effort and the impact it has on the lives of all people with a disability. I am afterall a disability studies scholar and activist. I have recently begun to wonder though if some of those dedicated to a cure for spinal cord injury are creating a cult like existence for themselves. Even the slightest criticism of the cure industry prompts a strong reaction. For instance I have recently taken some heat from those involved with Rutgers University Care Cure Forum. This website offers a dizzy array of over 70 different forums. I find little of value in the Care Cure forum despite the fact I look at it every few months (I am specifically looking at comments on sports equipment). I am decidedly uncomfortable with the praise heaped upon Wise Young of the W.M. Keck Center. “The mission of the W. M. Keck Center for Collaborative Neuroscience is the development of effective treatments for acute and chronic spinal cord injuries and to move these discoveries from laboratory to human lives as rapidly as possible.” I do not take exception to this goal but I do worry about the impact it has on the lives of people with a recent spinal cord injury. The same can be said when I look at other powerful institutions such as the Reeve Foundation and the Miami Project that push for a cure to spinal cord injury. There is a zealous following to the cure industry I am simply divorced from. I am not willing to spend my limited time searching out clinical trials when I encounter needless bias every time I leave my home. I have always maintained the problems associated with spinal cord injury are largely social. Of course some people struggle with paralysis. For instance, Symanski went into great detail about her physical struggles with her bowels and autonomic dysrelexia. I always end up returning to what Robert Murphy wrote long ago—disability is a social malady. And this is where I think our resources and efforts need to be directed. Social supports that make life possible post spinal cord injury. So to my critics I say more power to you. I wish you well and consider us to be on parallel tracks.  Go ahead and focus on cure. It is an altruistic goal. I on the other hand prefer to focus on equal rights.