What is in a Label?

I read many disability related blogs. The quality of the writing never ceases to impress me. Sure some blogs are poorly written but this flaw is negated by the thought provoking ideas presented. Some blogs are beautifully written and contain equally wonderful thoughts. I will not name names today even though that ranking disability related blogs would be fascinating endeavor. Regardless, I want to write about labels. I am inspired to do so by Eric who has a bog I regularly read, I am a Broken Man/You Cannot Break Me. In a post written on January 2 entitled "There is No Such Things as Disabled" he has thrown down the following gauntlet:

"How about we finally lay disabled to rest? I'd like to hear suggestions please. I'd like William Peace to put all 145 lbs behind this and chime in on what he thinks should replace disabled.
I looked at simply changing the spelling to dysability, but since dys still carries its meaning of bad or wrong, that won't work. Differently able. Different from Differe. My vote goes for differabled (leading to the use of the differability). I am quite serious so please leave your suggestions".

Eric does not break new ground in this post--a fact he points out. The important issue he raises is what is a disability and by extension how do we as a society disable people. I do not think of myself as having a significant disability in many social contexts. When I teach for instance my disability is not relevant assuming I can enter the classroom (this is no sure thing). Yet I am always perceived as having a significant disability--partial paralysis from the third thorasic verterbrae. This physical deficit is impossible to miss. I navigate the world using a wheelchair, a cool piece of technology in my estimation. This cool factor does not exist outside my household. My wheelchair is the ultimate symbol of disability. Society has a penchant for forcefully reminding me of my disability and inferior social status on a regular basis. If you doubt me, I suggest you try and use mass transportation or purchase a ticket to see a concert or professional ball game using a wheelchair. The point I am trying to stress is that society makes me feel disabled, it is a notion I cannot escape. Sure I forcefully reject this socially imposed inferiority but my staunch civil rights approach is out of the norm and at odds with what most people have learned or read about disability. What people think they know about disability is as old as it is out dated. Disability is a medical problem. Yes there is a physical element to disability that cannot be ignored but the real issues are largely social. A refusal to negotiate difference and as such disability based bias is the same as what other minority groups rail against. As an anthropologist I would maintain we people with a disability add another layer of complexity to our minority status. We are the other--outsiders within our own culture. We are in the words of Victor Turner "betwixt and between". We are not sick nor are we well. We are not purposely discriminated against but far from welcome. We are treated with benign neglect, out of sight and out of mind. Send a check to the poor bastards at Christmas time and thank out lucky stars we the all mighty normal people rule the world.

None of the above directly answers Eric question. I have an answer though I doubt many will like it. I reject labels and jargon. As an academic I know lots of jargon, lots of theories, lots of polemical arguments. Hell, I have engaged in such debates and never have felt like I learned a thing. I reject the word disabled. I reject the word handicapped. I reject the popular insider term gimp. I reject silly attempts at political correct terms that were fashionable for a nano second such as handicapable and physically challenged. I do not accept academic terms such as ableist because no one outside of disability studies scholars understands what the term means. I reject each of the above terms and years ago settle on the word crippled. Go look it up. Crippled in the dictionary refers to a physical deficit. That is it. Look up disabled and all sorts of connotations are associated with the word I reject. Cripple too has much cultural baggage. I want people, strangers and the uninformed, to think about this baggage. I want them to think--why would a man such as myself use the word. Cripple stops people. Cripple gets one's attention in a way that disabled or handicapped does not. People cringe when I use the word cripple to describe myself. My niece, a wonderful woman and program coordinator at an adaptive sports program is acutely aware of disability issues. She is a gifted person in dealing with those that have cognitive deficits. But when I use the word cripple she cringes and says "Oh, Uncle Bill!". I use the word not for her but the hordes of ignorant. As I have written many times all that people are taught about disability or appears in popular culture is dead wrong. The real problem we people with a disability encounter is the mainstream. Cripple makes these people think--it is not a word used regularly nor is it politically correct. I want to stop people as it is just too easy to gloss over disability related issues. In a newspaper for instance it is easy to glance at a headline "Budget Cuts for Special Education" and think ho hum and move on to more important issues. In contrast, a headline such as "Cripples Protest Budget Cuts" will make one read the article. Likewise, my use of the word cripple forces people to think. In choosing cripple I was inspired by Ed Roberts, founder of the independent living movement, who wrote about "cripple power" in the 1970s. Roberts is my hero. He is a cripple I admire. I am a cripple and embrace this word in the hope it makes others feel uncomfortable. I want people to be uncomfortable because I want them to think about my civil rights. Those civil rights are ignored, belittled, and violated even though it is against the law. One final silly point. I do not weight 145 pounds. I have lost weight since the Fall and developed my wound. I aspire to be 145 or even a buff and manly 150 pounds.

Not Dead Yet Asks For Donations

Anyone who has read my blog knows I deeply respect two disability rights groups--ADAPT and Not Dead Yet. There are other disability rights groups I like, Disability Rights and Education Defense Fund for instance but I reserve my greatest admiration for ADAPT and Not Dead Yet. I am by no means in favor of all that these two groups do but my differences are minor, a matter of style if you will. What draws me to ADAPT and Not Dead Yet is exactly what I do not have--a direct confrontational in your face approach. I am just too damn polite. Sure I am polemical when writing but in real life do my best to avoid confrontation. Yes, I have had confrontations but I do y best to avoid them.

Not Dead Yet is a national organization that is operating on a shoe string budget. Not Dead Yet is strongly opposed to any and all efforts that would lead to assisted suicide becoming legal. The proponents of assisted suicide in contrast have no financial constraints. They have much money at their disposal and are accustom to using its power to push assisted suicide legislation. Frankly the disparity between those for and opposed to assisted suicide is puzzling to me. Sadly I think part of the reason why assisted suicide groups are so well financed may have to do with the fact many people do not have a good death. This can be a traumatic experienced for loved ones who vow to change how we Americans die. Part of that process may include suicide. On the surface this seems like a reasonable belief. However, it ignores a significant social problem--namely not all people are valued in life nor as it is ending. I am among one population that is at great risk--people with a disability. Other populations include the elderly and terminally ill. All these lives have value. And it is these lives that Not Dead Yet seeks to protect. This is where I am in total agreement with Not Dead Yet.

I was shocked to learn just how little money Not Dead Yet has at their disposal. I am as a result amazed at what they can and have accomplished. They do much with very little. They deserve your support and mine. To this end, in a rare appeal for donations, Not Dead Yet is asking for help. I am sending a check today. Yes, me, a man so cheap my brother says my wheelchair squeaks everywhere I go, is sending a check to Not Dead Yet. It is the very least I can do. I urge everyone that comes to my blog to send a check too and if you cannot at least read the blog and book mark Not Dead Yet site on your computer. I suspect this is the only time I will ever make such a suggestion. We need Not Dead Yet. It is as simple as that.

Here is the donation information:

Tax deductible contributions would need to be made payable to:

“Center for Disability Rights” (CDR), designated for “Not Dead Yet” in the memo section of your check and mailed to 497 State Street, Rochester, NY 14608. Donations can also be made online by going to the Network for Good donation page, and following the prompts to donate to the Center for Disability Rights through the Network for Good (which allows credit card donations, adding a five percent charge), and designating the Not Dead Yet program. The default setting is for a one-time donation, but if you have the money and believe our work is important, please consider giving on a monthly or quarterly basis.

Glee and the Glorification of Walking

I read many blogs on a regular basis. One such blog is Wheelie Catholic. Two fascinating posts made me think and get mad. The first dealt with the question of walking. People who cannot walk ask people such as myself who are paralyzed if they wish they could walk again. I answer this question with a resounding no and try to appear pissed off (an easy thing to do). I find the question itself insulting. It assumes the answer will be yes. That I desperately wish I could walk when that has not nor has ever been the case. Sure shortly after paralysis I wanted to walk again but knew such hopes were futile. Such hopes or dreams about walking are akin to wishing one would not age. It is just not possible and not worthy of thought. It does not take most newly paralyzed people long to move on with life--all those I know who are paralyzed are quite content. Yet popular culture via the mainstream media glorifies the small number of people that want to walk again. These people are often desperate, willing to undergo questionable surgeries, hold fund raisers for these efforts and do not question the overall significance of their actions. I have written about this before and gotten a few extremely critical replies. I do not mean to intentionally upset people that want to walk--I just reject their efforts as dehumanizing to the vast majority that do not share such a goal. If they want to waste their time on an unrealistic, though noble goal, fine for them. I just ask them to do so with a modicum of thought as the the bigger picture.

The second post I read at Wheelie Catholic had to do with a show I do my best not to watch--Glee. I do not at any level understand the shows popularity. I am usually offended by the character Artie who is portrayed by an actor without a disability. Artie and the show's writers are obsessed with walking. This works out well since they made sure not to hire an actor without a disability. Anyone familiar with paralysis and wheelchairs knows Artie is a poser--a bad one at that. He is also a sad sack--the show always has him wishing he could be, dare I say the word, normal. As Wheelie Catholic perceptively pointed out

"Participants emphasized that myths and assumptions about disability continue to be perpetuated in the popular show. Instead of using the show as a vehicle to turn this negativity around another generation is being honed on plots that include ablest notions. For example the Christmas show portrayed walking and a cure as every disabled persons wish. The plots include Artie wanting to play football, wanting to dance and do other things but never deal with the fact that sports and dancing are done by people in wheelchairs. Rather Artie is portrayed as depressed because he can't do these things.
It's a real slap in the face to those of us who live with a disability to see this kind of thing week after week. It completely ignores our disability culture and reinforces old and backward notions about disability."

A slap in the face--perfect words for what Glee represents. The Christmas show was particularly offensive as they had Artie using an exoskeleton to walk. I find such an invention a preposterous waste of time, resources, and labor. I showed the exoskeleton to my son earlier this year when the contraption appeared in technology magazines and he burst out laughing. "Dad" he said "obviously they never talked to anyone with a disability to come up with such a stupid design and idea". My boy gets it. And this as Wheelie Catholic points out is the real tragedy with Glee. The message sent remains the same--walking is Artie's goal, his dream to do things "normal" people can do like dance, play sports, and dance. Let me clue the writers in to a basic fact: people with disabilities do all these things, and quite well. I am a decent skier. I am a good kayaker. I am and always have been a bad dancer. I know some superb skiers, some can walk some cannot. I have seen some amazing dancers that could not walk as well. Just try a google video search if you doubt me. Or better yet watch the X Games or the Paralympics. I do not see any of these people wishing they could walk sporting a silly exoskeleon. Too bad we cannot make Artie as cranky as me. Imagine the scenes possible? A scary though my son just chimed in! Imagine this: "Artie don't you wish you could walk again?" Artie replies "That is ableist propaganda. Walking I will have you know is highly over rated. My wheelchair rules. I can sing, I can dance, I can do anything I want and none of it involves the ability to walk. You are a bigot!" When that sort of dialogue appears on a mainstream television program I will be living in the utopia of nondiscrimination. I doubt I will ever live in such a world but will always work toward that goal

Merry Christmas to All

Twas the night before Christmas... Shoot someone stole my line. So tomorrow is the big day. I look forward to seeing my son's face when he opens his gifts. I look forward to a good meal and family. I look forward to seeing my black lab happy to have many humans about with whom she will play. I look forward to a roaring fire in the wood burning stove. I even look forward to Christmas music because I only listen to it on the day of Christmas. I am thankful I am healthy for I spent more than one Christmas sick and in the hospital a child. And truth be told those were the best Christmas' I ever had. Why? Well who does not feel bad for a kid in the hospital? I even got sympathy from my siblings! Staff went way out of their way to make kids happy as did my parents. And this is what Christmas is all about--good cheer and giving to others. By good cheer I mean putting on a smile and trying to make others feel better emotionally. This does not entail gifts but giving of one's sprit--the real meaning of Christmas. In terms of giving I do not mean gifts, sure gifts are fun to receive and give. The real giving is the gift of time and care for loved one's. Yikes, this may all sound trite as I am trying to get across sentiments that are hard if not impossible to express. It is in essence the most basic aspects of life I am thrilled to have. The love of my son, a good home, a wonderful family, friends. These things make me feel like a rich man. And so I extend my best to all those that come across these words. Merry Christmas to all and to all a goodnight.

New York Times Belittle Governor Paterson

The New York Times is at it again. Yes, the venerable paper of record has demeaned and belittled David Paterson. This is not unusual, they have an abysmal track record when it comes to discussing Paterson and the fact he is legally blind. In “Paterson’s Exit Presents Worry with Each Step” (December 20) is a cute play on words. The article begins “He worries about how he will make a living. He wonders whether people will value him once he leaves office”. These are good question considering 70% of people who are blind are unemployed—not under employed—unemployed. But this grim statistic is not mentioned or discussed. Paterson is worried about employment and what else? Well “”how to cross the street”! According to the NYT “a small army of state employees has done for Mr. Paterson what his predecessors did for themselves: they read him the newspaper, guided him up stairs and around corners, fixed his collar when it was sticking up, and even grabbed a quart of milk for him at the supermarket”. The subtext to this passage is clear—Paterson is not self-sufficient and perhaps by extension all blind people cannot be independent. Afterall Paterson had a “small army “of people, state employees no less, support him. The skeptic in me would like to point out all his predecessors had use of such an army but their competence was never called into question.

The NYT does correctly point out it must be hard for high powered and well connected politicians to suddenly leave office and be ordinary citizens. No more packed schedules, multiple perks and large staffs meant to serve. But the NYT relies on hyperbole when it notes that for Paterson “the transition will be extraordinary: after three decades in government, he must now relearn basic routines and rituals of living on his own”. It sounds as if Paterson is grossly incompetent, unable to function without a phalanx of assistants. What strike me as sad, depressing really, is the questions the NYT did not ask. The article mentions when Paterson was a boy his parents were determined not to treat him like he was disabled. This begs the question how do we treat children and adults with a disability? Less than human strikes me as the answer. I also wonder why Paterson defied his doctors advice and never learned Braille, used a seeing eye dog or cane. The NYT notes “Instead, he adapted”. Ugh! People with disabilities are superb at adapting but I wonder why Paterson took the hard road and refused to get a seeing eye dog, read Braille, or use a cane. Could it be he was ashamed of his disability? Could it be he was careful not to be perceived as disabled because it would hurt any political career? None of these questions are addressed. What does the NYT note instead? “His survival skills atrophied when he became lieutenant governor in 2007—and governor a year after Eliot Spitzer resigned.”

To his credit, Paterson plans on taking classes at Helen Keller Service for the Blind when his term ends. He also frankly states he is worried about not only his independence but his money. He does not as yet have a job and wants to work in the private sector. The governor’s job he noted gave him a false sense of income as the perks abounded. I wish Paterson well and get a sense most people in the state do as well. He took over the governorship at the worst possible time with no advance warning or notice. He did the best job he could do under adverse circumstances. In short, I think he was destined to fail—the deck was stacked against him from the second he took office. But articles like the one in the NYT certainly do not help. Yet another opportunity was lost by the mainstream media to discuss issues that affect millions of people with a disability, in this case blindness. Sure the article was touching, Paterson forthright and honest (in particular when he discussed the impact his job had on his family). But why does the NYT and other major media outlets always seem to miss the point. Paterson is like any other man that is leaving office yet the NYT chose to focus on mundane if not demeaning aspects of his life. I am not dismissing the concrete struggles Paterson will encounter but the NYT raised all the wrong issues as it related to his disability. This is why I am annoyed. It was a perfect chance to raise issues that we do not often read about as they relate to being blind. Why are so many blind people unemployed? How does people who are blind adapt? How does one choose to use a guide dog or cane? What reading software is available? And the list goes on and on. I have lots of questions as I am sure do readers of the NYT. Instead, we get the image of a man who is not independent, will struggle, and is looking for work. Demeaning indeed.

Feeling Betrayed

I was at wound care yesterday. I am back to my healing ways--sort of. The good news first: I am pretty much down to a single wound. The wound on my left hip that I developed in the hospital will be healed within a week to ten days. It is very small, half the size of a dime, and obviously almost healed. The other wound I developed on my ass is also healed. This was never a serious issue but could have been. The bad news: the wound on my right, the big problem from the get go is, well, a real problem. And truth be told it was always the major problem. It was a stage four wound, deep, nasty, and grossly infected when discovered. It is slowly getting smaller and has filled in--I have great granulation so I am told. Frankly I think it looks like chop meat--non infected lovely fresh tissue an MD would say. But that is not the issue. I have tunneling or undermining that is not getting any better. This is a huge problem. The MD changed the way we are doing the wound vacuum and hope in three weeks the undermining/tunneling is substantially better. If not, it is flap surgery for me. This surgery is a measure of last resort. Frankly the odds of me healing, that is the undermining/tunneling being better in three weeks are nil. I suspect the three week wait is less about healing and more about scheduling--going to the hospital for surgery between Thanksgiving and Christmas is a very bad idea. Shoot, going to the hospital for any reason between now and New Year day is a bad idea. I speak from experience. Staff does not want to be there, patients do not want to be there or conversely sad people that have no family want to be there. It is a bizarre mix of staff and patients. If humanly possible do not get involved.

I have thought of little else aside from my wound in the last 24 hours. I feel as though I have somehow failed or my body has failed to heal. I have been a model of "patient compliance" and know I am not to blame. I do not sit up often, my sitting is in fact severely limited. I try to bend my hips as little as possible in fact. None of this has done much good. I am worried--deeply worried. Flap surgery I see as a measure of last resort. If it fails I am in deep trouble. I worry not about the routine things that go wrong with surgery--I accept that risk as beyond my control. My worries are what happens if flap surgery fails. At that point I am at the end of the road--meaning I will never sit normally again. It will be just me and these four walls. That will be a hard life for sure. I have already lost the Fall, now the winter, and potentially much more. Of course I know flap surgery is usually successful and I will seek out a top notch plastic surgeon that does this all the time in New York City. The reality is I have no significant risk factors that could hurt me--I am not diabetic, have no circulatory problems nor am I obese. If anything I am too skinny--I weigh a whopping 140 pounds. I am even trying to gain weight without any luck (no more lite beer in the house).

What do I do when worried as I obviously am? Well, I read too much. I have been researching flap surgery and delving into growth attenuation again. The Hastings Center Report I read and wrote about has me wired. I am growing skeptical of the conclusions reached. I wonder what a rigorous informed consent would involve for those parents that would consider such a radical course of treatment that growth attenuation is. My idea of informed consent would render it virtually impossible to go through with growth attenuation. Frankly I don't trust large institutions such as Seattle Children's Hospital. I also have no faith in ethics committees--the sort of committee that already allowed growth attenuation to be performed, illegally as it turned out. Not a minor mistake in my estimation. I am also preparing for my son's return from college (that means ordering huge quantities of food he consumes). Now this makes my heart soar! I miss him very much but know he is learning and becoming an adult. His development is amazing and I am very much the proud poppa! Of course I also know by the time he returns to college for the Spring term I will be happy to see him go. It will not be easy for him or me to coexist. He is nocturnal and I am not. He is 18 and I am, well, old! I have household rules and he rebels--as he should. I know I did and made my parents crazy. I guess the apple does not fall far from the tree.

Monday Morning Thoughts

Two days ago I felt the future was bright. I blame or credit the itty bit of snow we had. We had enough flurries to coat the ground. It was truly beautiful. I had a fire in my wood burning stove, cracked the living room sliding door open and felt the chill air be whipped into submission by the heat of the room. I thought that life was indeed sweet and that our culture has evolved in my lifetime. Based on the way information is now shared with the click of a few buttons on a computer I suspect social change will take place with increasing speed. What do I do when I feel so optimistic? Well I spoil myself and read the work of people I deeply admire. Hence I went to read Stephen Kuusisto always thought provoking writing at Planet of the Blind. Now this man can write. This man is a scholar’s scholar. He is also funny in the extreme. But what I love about his work the most is his ability to make me think. And I never cease to be amazed that we often share the same views and visions of the future. A few days ago, December 5 to be precise Kuususto wrote:

The stories arrive from every corner: a woman in japan who has had a stroke is walking with the aid of motorized legs; an American soldier is returning to combat duty with a graphite foot; a blind man in Finland has received an implanted microchip in his retina and he can see for the first time in his life. The changing nature of disability is in fact a cyborg manifestation of our broader human future—soon everyone will be part flesh and compensatory device.
“What’s that Mommy?”
“That’s a picture of the old day when people just had arms and legs”.

When I read this I thought of many experiences I had as an adaptive skier last winter. I felt like the Pied Piper of the slopes—kids were drawn to me like a magnet. My sit ski made me without question cool! Adults too were intrigued. I was asked more than once if it was possible to rent a sit ski as it looked like fun. Such experiences led me to conclude that within the realm of adaptive sports, skiing in particular, there is a cool factor involved in being an adaptive athlete. This is particularly true with kids—they are drawn to technology of all sorts. My son for instance thinks my mother’s prosthetic limb is the height of cool. When he was younger he termed her “The Grandma-nator”, the obvious reference here to the Terminator movies. No such cool factor however extends to disability within the academic and medical realm. Disability among academics is not seen as positive in any way. In fact a great deal of animosity exists that is directed to students with disabilities that seek any of accommodations. For instance, extra time on tests is perceived as akin to cheating or an unfair advantage. Likewise, spending money on ramps, elevators and electric doors is seen as a waste of scarce resources for a limited number of people. This thought process makes me crazy. It is just so wrong and narrow minded that is boggles my mind.

Why is disability, especially an obvious one such as paralysis or blindness such a big deal? It does not take a person long to learn how to adapt to such physical deficits. Indeed, there are some advantages to being paralyzed and here I am not thinking of handicapped parking! The point is I take great pride in my body and what it can do. I see nothing inherently “wrong” with myself or my body. Most people do not share this sentiment. By most people, I mean all those I encounter in a day. Disability we are taught in subtle and overt ways is bad. Everything must be done personally and medically to “overcome” a physical deficit. But no one stops to think what happens when a physical deficit is permanent like my paralysis. The fact is we people with a disability simply move on with life and incorporate disability into our lives and concept of self. It is part of our very idenity. Sadly, most do not get this at a fundamental level.


Eric Parens, a bioethcist I know and respect has written about the above disconnect between how a person with and without a disability think about disability in the broadest sense of the term. He wrote that when he initially heard disabled people state their disability was a central part of their identity he was taken aback. Parens is not proud of this fact but her sure as hell is honest. According Parens, “I practiced some armchair psychoanalysis. Yes, yes, that’s very nice. But let’s be honest: you’re in denial. The more I heard about people who say that the most difficult thing about having a disability was the way temporarily able-bodied people treated them, however, the more I began to take them at their word. I became convinced that if, after a process of truly informed decision-making, someone with a disability refuses the use of medical means to improve her social experience, then there is no good alternative to respecting her decision, no matter how surprising I might find it.”

The above quote was found in “Respecting Children with Disabilities—and Their Parents” (Hastings Center Report, 2009). Parens gets it! He was capable of putting aside his own learned bias and accepting people, in this case those with disabilities, for who they are as humans. If he can do this and children appear to be inherently capable of accepting disability why are adults so resistant to this line of thought? I must reluctantly conclude fear is a factor. Unlike other minority groups, disability is the one minority any person can suddenly belong to via bad luck such as a car accident. But surely fear alone cannot be the sole reason people with disabilities encounter such overwhelming prejudice. I have pondered this for 30+ years and have yet to come to an adequate resolution in my mind. I refuse to accept the status quo and hope through technology, social evolution, and superior exchange of information we can hope for a better future. One in which a paralyzed person such as myself can read in history books what discrimination was like.