Handicapped Bathroom Stalls

I got angry today.  I feel bad--sort of. When I am on Syracuse campus all day I lose a lot of time. I lose much time simply waiting. I spend a lot of my waiting time in the building where I teach. The waiting is typically spent outside the bathroom. Every day I work I wait outside the bathroom. I wait because there is only one accessible bathroom I can use in the building. This is not unusual. I routinely wait to use an accessible bathroom or accessible stall. As I have joked before, I think constipated bipedal people are magnetically drawn to the single accessible bathroom I can enter.

What set me off today was a minor misunderstanding with my son. We are sharing my car. I was on time to see him but he was in the wrong location and I lost ten minutes of my time. I arrive on campus annoyed and with much to do. I did not eat breakfast and go directly to a nearby campus cafeteria. Before I order my sandwich I need to go to the bathroom.  I enter the accessible accessible bathroom--three stalls are empty. The only stall I can enter is occupied. The person using the stall is oblivious. I can hear the music ten feet away from his ear buds. This is a lost cause. I take the elevator to the second floor. Three empty stalls. The one I can enter is occupied. Another person listening to very loud music via ear buds. I get in the elevator yet again. Up to the third floor. Another three stalls empty. The stall I can use is occupied. Another case of loud music via ear buds. Up to the fourth floor I go. Three empty stalls. Yet again the only stall I can get into is occupied. I am beginning to think every constipated male on campus all agreed to deficate at the same exact time. However, there is hope on the fourth floor. No ear bud noise in the accessible stall. I wait. I wait some more. I make some not so subtle noise. I cough. I make it pretty obvious I am waiting for the stall. At this point I have had it. Four occupied toilets on four different floors. All stalls occupied by men who seem to have all the time in the world. So, I lose it. I bang on the door like a cop. "How long are you going to be?" Silence ensues and then the reply with a sarcastic tone: "I don't know. I don't time how long I take to shit".  Great a smart ass. "You are in the only accessible stall and I need it now". My tone is not nice. My voice an octave too high. The reply "Well, too bad for you. I think now I will be a while." This is not the expected answer. Indeed, next thing I know I hear ear bud music at the highest volume possible.

I take a deep breathe. I try to be the Zen cripple. This inconsequential disrespect and utter lack of attention to the life of people with a disability plays out in an infinite number of ways. I am a respected scholar yet this does not help me when I want to use the rest room. If I complain I am a crank or an inpatient jerk. The lack of thought is not intended bias. None of the men using the accessible stall planned on inconveniencing me. It just happened. Here is the rub--it happens all the time. The delivery man who parks in handicapped parking. The restaurant with tables so close to each other it is impossible to navigate the dining room. The locked handicapped entrances. The side entrances with a bell and sign "please ring bell for service". The elevators and wheelchair lifts that are either filthy dirty or filled with cleaning supplies. The stadiums with substandard handicapped seating. The multiple gas stations that have a non conforming ramp in the back that is unlit at night. The minor transgressions that when pointed out is met with "Well, no one has ever complained before".

Life with a disability is an exercise in frustration. It takes me longer to do the ordinary. Make my bed, shower, get in and out of the car. etc. My time is routinely sucked out the window. This is my norm. The bipedal hordes that rule the land are oblivious to wheelchair access. This lack of thought, the ignorance and lack of care is unacceptable. I suspect I waited at least 45 minutes today. The wheelchair lift into the building I work in takes one full minute to close. This "safety feature" results in two minutes wasted every day. Ad in waiting for bathrooms, driving around trying to find an accessible place to park, looking for obscure accessible entrances all take up my time. Today I had to deal with a smart ass in an accessible stall that decided to be snarky. Just unacceptable. It is also inconsequential. If this is my main complaint I am way ahead of the game we call life. But am I? Am I really ahead? Am I ever typical? The sad answer is no. There is no place outside of my own home I can let down my guard. I really cannot trust anyone. Today, this made me weary and angry. I doubt I will live to see the day when the norm is to value people with a disability. To have a default nonthinking bipedal person go for the narrow stall and unwittingly leave the accessible stall free.

Social Isolation in Academia

The AWP is back in the news. Forget the acronym. It does not matter. Replace the AWP with AAA, ASA, APA, ASBH etc. The point is virtually all academic societies and their annual meetings in cities across the nation present needless obstacle to inclusion. The AWP simply happens to be the latest organization in the news for its discriminatory practices toward scholars with a disability. Link: https://www.insidehighered.com/news/2016/03/28/writing-program-association-continues-debate-access-members-disabilities As a young scholar, I believed over time the exclusion of scholars with disabilities would fade away. During my career I have attended academic meetings year in and year out. I have given talks at prestigious universities. I have also given talks at conference hotels across the country. All academic organizations were forewarned a bad cripple was coming. Think of the Yellow Brick Road--ding dong the wicked witch is on her way. Obstacles abound despite the fact organizers know well in advance I use a wheelchair. Inaccessible speaking platforms, inaccessible podiums, inaccessible technology, inaccessible hotels, ramps grossly out of compliance and dangerous, inaccessible buildings, no handicapped parking, no access to mass transportation, inaccessible hotels, etc. You get the point. The repetitive  refrain has not changed: "I am so sorry. I was told the podium was accessible". I hear sorry often. Sorries abound. Yet change is illusive.

Over the past two decades I have tried hard to advance the rights of scholars who have a disability--any disability. Part of this effort was self centered. I advocate for myself. I have no choice but to do so. The vast majority of academic organizations ignore access and disability issues. I am repeatedly told "sorry but our organization is not responsible for access. Call the hotel, they will have all the information you need". Some organizations belittle scholars with a disability.  Last year the AWP rejected all panels proposed that had a disability based focus. This year the AWP belatedly and half heartedly created a disability caucus. This prompted Stephen Kuusisto to write:

The national conference of the Associated Writing Programs or AWP in the year 2016 failed to include any disability literature among its hundreds of literary panels and presentations. Imagine had they failed to include any gay, lesbian, bi-sexual, trans-sexual, queer, gender fluid presentations, or a single panel devoted to writing by people of color or women? The outcry would be considerable, but not so with disability—a matter I consider shocking, not because able bodied people can’t conceive of disablement as a profound and universal element of human life, but because, (and here I shall echo Marcuse) there is no truth in art that does not break the monopoly of established reality). Gay reality is crippled reality; black reality is crippled reality; feminist reality—you get the picture.

So why does the national conference of the creative writing programs in higher education “not” get disability as an artistic seed bed, and perhaps the most inclusive of all marginalized categories, insofar as nearly everyone will have a disability at some point in this life? Why indeed. The answer lies in a paternalistic view of physical difference, a 1970’s model of the disabled as outliers who probably cost lots of money to include at the university; who must have a “special” office to handle their requests for whatever moist and inconvenient things they need. The rest of us able bodied professors fairly shiver at the prospects. These people have breathing tubes, motorized scooters, talk funny, or don’t talk at all. They have colostomy bags and crutches and sometimes they have wigs. They bring “down” the youthful, peppy, yoga-centric, aerobically charged, glossy entitlement of diversity filtered through the optics of good looks and vitality. Why a couple of years ago at their conference in Seattle, they hosted a poet with a disability who said publicly she’s not interested in that identity—would prefer to be understood as a real poet.

You see how it works? Real literature is GQ and Vanity Fair; it’s happy; and we all know those disabled writers can’t be happy—why in fact, disability is so hard, most of us university sponsored, middle class creative writer types imagine if we’re ever going to be disabled, well, by God! we shall commit physician assisted suicide! Do I gild the lily? Am I stuffing the owl? Perhaps. But leaving disability out of the conference, and then, pretending to afford something like awareness by hastily creating a “disability caucus” where the disenfranchised crippled writers can meet, and maybe even express their concerns, well, this is a kind of Uncle Tom business. When I hear separatism I know it for what it is.

Separate. Always separate and special. This goes against the grain of cherished American ideals foremost among them the idea we are all born equal. While one and all know this is not true it is a myth we Americans cherish. Here we are 25 years post ADA and disability rights remains an unpopular notion. The law has utterly failed to resonate with the American public. There is no social demand for access. My little town in Central New York is lovely. Old churches and buildings have been loving restored and impeccably maintained. The town is picture post card perfect. This perfection ends if you use a wheelchair. Most stores on the main drag have a step to enter. I cannot enter most of the shops. A step, one step is preventing me from enjoying my town and giving my business to local shops. The ADA deems something like a single step readily accessible. Almost all the shops in town could easily be made accessible. All the academic conference I attend could easily be made accessible. There is a lack of will and knowledge to do so. You see special is okay provided it is not imposed. Even more important is that access be inexpensive because it is not valued. The ADA failure is not legal but rather social. One example will suffice. Ten years ago the Subway shop  in my town was sued because a step prevented wheelchair access. The case progressed at a glacial pace. About a year ago a settlement was reached. The step in the front would be replaced by a ramp. A ramp that would be welcomed by teens, college students, mother's with baby carriages, bikers, and many others. A ramp, however, might mar the architectural heritage of the town. The unwanted ramp is being imposed on the town by the Federal government and that damn ADA law. So what did Subway do? They made the bathroom accessible and did not ramp the entrance as agreed upon in the settlement with the DOJ. The ramp empowered those that did not want it to undermine the ADA. "The ADA is a joke! The government forced us (insert outraged local shop owner) to make an accessible bathroom in an inaccessible store". Ignored is the fact the Department of Justice required said ramp. A lack of will. A lack of desire. A lack of thought. In example of cultural ignorance. When I complain, when I point out the lack of access or, worse yet, assert my civil rights I am bitter. I am an angry man. Think Ralph Ellison. Think Jim Crow. Advocating for disability rights is a screed. I am the hopeless and wearisome narcissist. Yet it is never about me. It, meaning equal rights and a fully inclusive physical environment, is about the person with a disability coming after me long after I am gone. It is about screen readable software for the blind. It is about ASL for the deaf. It is a quiet room for some within the neurodiveristy community. It is about different means of communication for those who have are not verbal. It is about cutting edge technology for amputees. It is about the inclusion of those with profound physical and cognitive disabilities. It is about the elderly and those that age into disability. It is about those with chronic illness. It is about Ashley X and the bodily integrity of those who cannot advocate on they own behalf. It is about those in a minimally conscious state. It is about the largest disenfranchised group in this nation.

Let me provide an incentive and forewarning. We people with a disability abound. We are a distinct class of people. The law is solidly on our side. While I the poster boy for the universal wheelchair logo a disability may or may not be visible. Be careful. We are among you. And more to the point any human being can become one of us. Cripples are born and some are made by happenstance. Don't trip and break your head. Don't get old. Don't get sick. For if you do, and it will happen eventually if you live long enough, you will become one of my people. For me, there was a decade long decent into disability as a young man. The typical body I had is long gone. For others it can happen in the blink of an eye. I urge those without a disability to be narcissistic. Embrace my screed. Don't do it for me. Do it for yourself. Think of it as insurance. Disability is part of life and human evolution.

Growth Attenuation: Its 2007 Again

It has been a week or so since the New York Times Magazine section published an article on growth attenuation. The essay by Genevieve Field, "Should Parents of Children with Severe Disabilities Be Allowed to Stop Their Growth?" has been savaged by disability rights activists. Link: http://www.nytimes.com/2016/03/27/magazine/should-parents-of-severely-disabled-children-be-allowed-to-stop-their-growth.html?_r=0 I get the anger and frustration expressed by my crippled brethren.  I am staunchly opposed to growth attenuation and have published essays against growth attenuation in a wide variety of academic and mainstream publications. My views have not changed much since 2007 when the news about Ashley X came to light. The response to the New York Times essay is very similar to what took place in 2007. Instead of Doug Diekema being attacked this time it is Field. I spoke to Field two years ago. I liked her. She wanted to get into the nuances, the details of what disability rights is about, and more specifically what was it like for care givers to provide physical and emotional support for those with severe disabilities. She seemed different to me. I have spoken to many mainstream journalists about growth attenuation and almost all of them already had an angle. Field struck me as different. Had I not trusted her our conversation would have been very short.

Over the last two years I assumed her story did not work out and she had moved on to another story. Then all of a sudden my Facebook account was flooded with messages. Over the weekend I weighed in on some long discussion threads. I thought the criticism she was subjected to was too harsh. I said as much and my peers in disability rights let me have it. It is not the criticism that I objected to but it was the harsh tone. Again, I get it. Field, to my knowledge, does not work within disability studies, disability rights or bioethics. Why did the New York Times select Field and not a scholar such as Eva Kittay who has written eloquently about growth attenuation and has daughter with a severe disability. This is an important question. I suppose my reaction is different in large part because the essay by Field did not bother me. Did I like it? No. Did it portray opposition to growth attenuation badly? Absolutely. My first thought was typical New York Times. The so called paper of record regularly screws up stories about disability. My expectations for the New York Times  when it comes to disability is very low. The paper, as many will recall, had Peter Singer write the obituary for Harriett Mcbride Johnson--the utilitarian philosopher who, all things considered, thought she should not be alive. I was just happy the essay was not written by someone who supported growth attenuation.

I was very angry in 2007 when I first learned about the Ashley X case. I expressed that anger in my first essay about growth attenuation in Counter Punch. Link: http://www.counterpunch.org/2007/01/18/protest-from-a-bad-cripple/ My anger got me nowhere. What I learned since growth attenuation first came to light is that anger in this case must be contained. In my estimation the parents that are willing to entertain the idea of growth attenuation are zealots. The physicians who are willing to perform growth attenuation are well meaning but narrow minded. They see just one thing: the patient in front of them. Ignored are the larger ethical implications. Ignored are the gross lack of social supports for parents who care for a child like Ashley. Oh, lip service is paid to the inequities that abound. Yet there is always the proverbial but. The but is social supports are currently absent. We are living in the here and now. The Hastings Center Report and the Seattle Working Group suggested if growth attenuation is going to be performed we should study it. Well, that is not happening either. The ethical discussion surrounding growth attenuation is a mess.

Back to Field. I sent her an email. She was taken aback at the criticism and recalled I told her I do not envy you. The reaction could be swift and nasty. I was right. I was right because my essays in opposition to growth attenuation always generates email. The email I get is not reasonable. It is nothing short of hate email. But something seemed off to me about Field's essay. It did not reflect our conversation. She struck me as balanced. The essay she wrote was not balanced. Short shrift was given to disability rights opposition and the larger cultural implications of growth attenuation. Worse, disability rights activists came across as zealots. A nod was given to the opposition in the form of Kittay's work and a link to one of her best essays was included in Field's essay. Something was off. It turns out that her original essay submitted was far too long. Indeed, it was twice as long as requested. Here the New York Times editorial board comes in. The editors mangled Field's long essay. Did Field make a very basic journalistic error? Apparently yes. I am not a journalist but I have submitted many an essay for academic publication that was far off in terms of words.

I am not here to defend Field. She is taking the heat and can take care of herself. My point is that reacting with hostility is counter productive. The severe criticism of Diekema was framed in a way that made disability rights opposition to growth attenuation look bad. Worse, Daniel Gunther's suicide in 2007 was falsely connected with growth attenuation. This was not the case. The man experienced clinical depression. I made mistakes too. My anger got the better of me in my first essay about growth attenuation linked above.  If there are zealots involved in growth attenuation it is not present within those who oppose growth attenuation. To me this remains the core issue. Ashley X parents enjoy and safe guard their anonymity while waging a public campaign to promote growth attenuation. They continue to operate pillow angel.com and do periodic interviews in various newspapers. They provide support for desperate parents who are considering growth attenuation. I assume they also provide recommendations for physicians who might provide this so called treatment. I find this deeply objectionable if not disingenuous. Are they concerned about their daughter as they maintain or are they growth attenuation advocates? Exactly who are the zealots here? The fact is growth attenuation remains a radical surgical intervention for a social problem. Less than 100 children have been subjected (mutilated) by growth attenuation. Virtually all parents who care for a child with a severe disability gets this. They move on with life. They provide love and support for their children. This is a new class of people created by advances in medical technology we don't want to think about. Our lack of thought results in a human rights violation--the lack of social supports for those most in need is woefully absent. Parents and the severely disabled people they care for struggle mightily. What do disability rights scholar and activists do? Not enough in my estimation.

Given the death of my mother last week, I am not only in mourning but retrospective. Today I read with chagrin my Counter Punch article. Anger was my mother's primal go to emotion. I do not share this trait though I do share many others. Since she died I have not had a drink. When bad things took place my parents took the bottle of scotch on the kitchen counter and put it in the cabinet. When things are bad they told me don't drink. A life lesson was learned. The point here is that controlled anger is good. Anger directed outward was used by Ed Roberts and he called it cripple power. So looking at what I have written about growth attenuation the essay I like the most appeared in Bioethics Forum and was titled "Ashley and Me". Below are the opening paragraphs. If interested you can read the rest of the essay in full. Link:http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4742&   I stand by these words. I also seek a unified reasoned opposition to growth attenuation.

When I first read about the Ashley treatment in 2007 I was stunned and angry. How could parents and doctors implement such a radical intervention? Today my outrage has been replaced by a sense of discomfort and vulnerability. Beyond my personal feelings, I think the Ashley treatment is critically important because two extreme views exist that have become entrenched. 

The doctors in Seattle who initiated the Ashley treatment, and its proponents, firmly believe they have helped one child and potentially many more. In contrast, many people with disabilities, like me, consider the Ashley treatment morally and ethically unacceptable. Given these polar opposite perspectives, what does an effective ethical consultation require? 

There is one core issue in my opinion: the sterilization of any child requires judicial review. It is not the place of an ethics committee to determine whether such a course of action is morally justifiable. Moreover, controversial issues such as breast bud removal and the eventual size and weight of Ashley obscure the central issue: the hysterectomy that was performed may have been part of a larger procedure known now as growth attenuation, but the end result was an illegal sterilization. 

State laws vary with regard to sterilization, and they are contentious and contradictory. Virginia, for instance, has the most protections, and extensive due process steps must be undertaken before a court may give permission for surgery on someone unable to give informed consent. What the state laws all hold in common is that the greatest controversies over sterilization pertain to people who, like Ashley, are unable to consent. 

I am not suggesting that sterilization of people with profound cognitive disabilities is wrong – in some cases it is permissible but only after “less intrusive and temporary methods for contraception or control of menstruation are not acceptable alternatives, and procedural safeguards have been implemented to assure a fair decision making process.” These are the words of Douglas Diekema, Ashley’s physician and the main proponent of the Ashley treatment. 

What ethics committees need to focus on are the facts, and foremost among them is that growth attenuation and the Ashley treatment involve sterilization. Ethics committees cannot direct their attention to any other issue. A quick glance at history reveals the inherent dangers of overlooking the sordid experience of sterilization.

The Parent Lottery

My mother, Agnes M. Peace, died Wednesday night. Her much loved children John, Kathy and Mary carried the burden of caring for her at the end of her life. I freely tell people that my siblings and I hit the parent lottery. Had it not been for my mother and father I would not have survived my childhood. They were pillars of strength when I was going through the medical mill as a child.  They supported me in a way that forever changed my life. The world has lost two great people. I am just heartbroken. Mourning the death of a parent is terrible.

My Silence

I have not posted in a long time. My mother is very elderly and seriously ill hence my silence. I will be back to posting regularly relatively soon. I appreciate the many inquiries about my silence. I am fine. Please send good thoughts and prayers to my Mother, Agnes M. Peace. She is an amazing woman. If not for her fierce care and love for me as a morbidly sick child I would not have lived to become an adult. As I tell many, I hit the parent lottery. My parents were as close to perfect as humanly possible.

On Being Divorced

I am 38 years into my post paralysis life. Paralysis is inscribed on my body. Human kind was not meant to be paralyzed. I have the battle scars that vividly illustrate this fact. Yet as I look at my body and its profound and obvious deficits they are the least of my problems.  If I were asked what one aspect of life has been most problematic it would be an easy question to answer: social isolation. Using a wheelchair is akin to a portable social isolation unit. Social isolation leads to a myriad of life limiting issues: unemployment, barriers to basic health care, severe lack of appropriate and affordable housing, violence, forced and coerced institutionalization, sexual and physical assault, inadequate education, segregation, obesity, unhealthy diet, inactivity, poor mental health care, depression, etc. The list is long and in the words of Anne Kavanagh "society is making people with disabilities sick".   I think the social environment for people with a disability is getting significantly worse not just in the United States but globally.

As I write my grim assessment on the plight of people with a disability I look out at a brilliant blue sky. The lake upon which I look at daily is covered with a thick blanket of ice and snow. I have seen a few snowmobiles blow across the lake at break neck speed. I have observed cross country skiers slowly traveling in the snowmobilers tracks. I have even seen a bright yellow small single engine plan fly very low over the lake. While frigid, there is no denying it is a gorgeous day. This is Central New York winter at its level best. I am a lucky and privileged man. I have had a supportive family. I have a few close friends in the area I now reside. I have professional colleagues at Syracuse University and elsewhere I admire and respect. My son whom I deeply loved has moved to the Syracuse area. However, as I age, a hole in my heart has formed and is growing. For months now I have been unable to express exactly what is gnawing at my heart. I was deeply depressed over the course of the summer. Fall semester classes and cooler weather cured my depression but that hole remained. I thought it was simply like many summers when I struggle at multiple levels. But no. No, this hole I feel is very different. Sure I could point to social and economic insecurity that is ever present in the lives of people with a disability as prime variables. My concern is that the growing hole in my heart will transition from being a proverbial pot hole to a cravass from which I will not emerge. I can no longer ignore the fact society as it relates to people who live with a disability is hopelessly fragmented. The social infrastructure for people with a disability is either unstable or absent. There is simply not an integrated social support system nor the political will to support the lives of vulnerable people. I enjoy my life and fill it with rewarding work, friendships, teaching etc. but at the end of the day one thing remains stark and ever present: I am very much alone.

Don't get me wrong. I am not a social butterfly nor am I looking for a romantic partner. I have reclusive tendencies. I am not good at keeping in touch with people via the phone. I am a terrible email correspondent. My loneliness is not rooted in any of these variables. In the last few months I am ever so slowly realizing what I need to fill the broadening hole in my heart. I need a community of like minded others, others with a disability who want to lead a good life. I want to go outside my door wherever that might be and not worry about a stranger asking me rude and intrusive questions. I do not want to be stared at. I do not want to discriminated against. I do want to be told how special I am for overcoming my disability. I do not want to experience awkward and demeaning social exchanges in which bipedal bigots, ableists, who assert social dominance. I do not want to hear how great I am because I can get in and out of my car with my wheelchair. I desire to interact and live with others who want to do good. I want to live and work with others who see what people can do. I want to be around others who see the very best humanity has to offer each other. I want to live in a sustainable environment. I do not want to scar the earth nor do I want to be separate from the food supply. I want to live seasonally and in good spirit. My material needs are minimal. In short, I want to live in a community. In the community I imagine people with a host of disabilities will see each other for what we are--living breathing human beings. Equal beings. Equal beings who support each other. People who want to collectively live and work together and make a difference in the life they lead and in the lives of others. I need my people--my people being all those with a disability. I truly need my crippled peers. I want to revel in what we can do.

For better or worse I am a dreamer. I have seen inklings of the community I imagine in various parts of the country. As I age, and as the hole in my heart deepens, my need for community grows at an increasingly rapid pace. Part of this yearning for community is the knowledge my body, at age 55, has maxed out physically. I will fight tooth and nail to maintain my current strength but the reality is I am going to need physical help as I age. There will be no institutional life for me. This is a rabbit hole from which people with a disability do not emerge from. In place of an institution I foresee a community of like minded others. Young, old, new born, children, adults, people with disabilities, able bodied--the full range of humanity. If Thorstein Veblen and others can dream of utopias I think I will dream as well.

Tangled Day

I was up very early this morning. I did not sleep well. Actually I did not sleep at all. I am unhappy. I have no reason to be unhappy. Well, maybe I do have the right to be unhappy. In the words of my good friend Stephen Kuusisto yesterday I had a "tangled day". Entanglement and disability go hand in hand. Life with a disability is always an adventure. I was in my little town of Cazenovia yesterday. I needed to pick up my mail and put gas in my car. Ordinary and dull errands. I merely wanted to be outside and get things done before I saw my son for lunch. I shoveled out my driveway--a chore I love. I was content until I pumped my gas. I was accosted by a man who was upset. He got directly in my personal space, his face flushed with anger. "What are you doing out in the snow and cold! People like you are medically fragile. You need to go home now. Where are the people who take care of you". This is unusual. People typically do not get close enough to my body for me to feel threatened. In a guttural tone I replied "Leave me alone". Thankfully that is exactly what he did. Off to the post office. I am looking at my mail when a man taps me on the shoulder. Without any warm up I was asked "Have you seen the BBC documentary Simon's Choice? This is a documentary about assisted suicide. I answered: "Yes, I watched it last night." Deeply worried about the direction this unwanted conversation was going he replied: "Why don't you want to die? I have seen you around. We put down paralyzed animals. We should do the same with people. You can't walk or enjoy life. Your existence is depressing to all". How the hell do I respond to this statement. This man is a bipedal ableist. He is likely a pillar of the community and beloved by all. He is a Christian do gooder and his type abound in Central New York. No doubt he is a hard worker and devoted family man. He could be a member of the PTA or school board. I am sure he is a church goer. There is only one thing I know about this man: he wants me and all people who are paralyzed dead. He is eager to talk about it. I will not give the bigot the satisfaction. I reply "I have nothing to say to you. I compile the mail and quickly leave the post office.

My day is saved by son. He loves me. He values my life. He asked me for advice. I am proud of him and hope he is proud to call me dad. I am delighted for him as he has found a real job. He now works for a high end internationally known hotel chain. The job has potential in terms of professional growth and could enable his travel lust. I am delighted to see him happy and positive about his future. To celebrate we went to Wegmans and treated ourselves to some luxurious food we rarely purchase. We had an absolutely delicious meal. He borrowed my car for the weekend and was thrilled. No bus rides to and from work this weekend.

The above is the perfect illustration of a tangled day. Only people with a disability will feel an entangled day in their soul. I never know what people will say to me. I never know exactly how my day will go. I am forced to deal with a bigot one minute and the next I am sharing a meal with my son while my beloved lab Kate hovers nearby. Loved one moment and the next a total stranger suggests I should be dead. What does a sleepless cripple who had an entangled day do? Wake up well before dawn and read. As dawn approaches I bundle up. It is likely below zero and snowing. I love this deep chill. I love to see Kate's black coat covered in snow. The contrast of black and white amuses me. We do not stay outside too long. The dawn light approaches. It is truly silent. I am very much alone. No neighbors have lights on yet. The animals and birds are silent. The frozen lake is wind swept by snow. I feel at peace (no pun intended). This sort of bitter snow causes the metal of my wheelchair to creek. Only I know what this feels like and it warms me. I close my eyes, Kate at my side, wind in my face. I spread my arms wide apart. I love my crippled body. I love my life. The idea that death is preferable to life with a disability is laughable. I will never bow down to baseless disability based bigotry. Never.