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.

Welcome to My Life

I was at Wegmans yesterday. I will readily admit I love Wegmans. Good food, good prices, good employees. The store represents the culture of Central New York. Good hard working people live in New York. Goodness abounds. Goodness has a downside when one ventures out on Sunday. I was in Wegmans with my son yesterday. The store was relatively crowded. There was a long line at the deli counter and I was in the mood for pastrami. I had my son get in line for me while I continued shopping. I was looking for an item when a tall young woman silently got my attention. She awkwardly bent at the waist and got her face far too close to mine and in a very slow deliberate voice stated "Can... I...help...you". Yikes, I thought, this young woman must have taken a disability etiquette class circa 1955. It does not happen often but I was rendered speechless. The young woman then stated "I...can...help...you...I...can...read...the labels. I...can...read". This was so over the top I was mute. I just replied in a neutral voice "no".

When my son returned with my pastrami I told him what took place. He laughed and said "Dad, you should get PhD Columbia University tattooed on your forehead". This is so sad it is funny. Not good funny. Bad funny. The woman in question was likely taught or assumed all people with a physical disability also have significant cognitive deficits.  Where do bipedal people learn this shit? My next thought was I have a relatively acceptable body. I use a manual wheelchair. I am not a big man. I will forever wonder why people fear approaching me. And yes bipedal people do fear people with a disability. The more obvious the disability the more fearful bipedal others become. Mothers reinforce this on a regular basis as I hear them tell their children "watch out for the wheelchair". I have been thinking about fear a lot recently. I am deeply worried about my future. My time at Syracuse might be coming to an end. I am applying to jobs in different cities across the nation. Will a university hire me who has a body that is feared. Maybe, maybe not. On a stormy, wet and warm winter morning I am fearful for good reason. I am 55 years old and might be unemployed when the semester ends.

Snow Wheelchairs and Inspiration

I love snow. I enjoy everything about snow. I love to watch snow accumulate. I love trees encased in snow glittering like diamonds. I love a full moon and the light that reflects off a blanket of snow. I love skiing. I love shoveling snow. I love playing in the snow with my beloved lab Kate. The contrast between her jet black coat and the white makes me laugh. I like driving in the snow. I like to make anatomically correct snow people. I make snow men, snow women, and atypical snow bodies. The only down side to snow from my perspective is how bipedal react to my presence when it snows. Miracle of miracles I go out in the snow and cold. I have no idea why many bipeds think people  who use a wheelchair hate snow and need excessive help. Bipedal people react strangely when they see a person such as myself using a wheelchair shoveling snow. A wheelchair and snow are not incompatible. Much depends upon the person and the type of wheelchair one uses. I am a snow and cold weather man. I have met other people with a disability who share my love of snow and cold. I have met people who have a disability that despise the snow. This is not exactly a news flash. My God, we cripples are human beings.

The social response to snow is fascinating. A snow storm forecast boosts supermarket sales. People dash to the gas station and fill up their car. Schools often close before a flake of snow falls. The ratings for the weather channel go up. Weather forecasters whip people up into a frenzy. Today the New York Daily News and other tabloids headlines are blazoned with photos and catchy headlines: "The Great Dig Out" etc. I do not mean to diminish the threat severe weather can create. People died in the blizzard that hit large Northeast cities yesterday. People need to be prepared. My focus here is on the skewed social interaction snow creates when one uses a wheelchair. Many bipedal people assume a  person that uses a wheelchair cannot go outside when it snows. My mere presence is shocking. Leaps of logic are made by bipeds that make me shake my head in wonder. I have been told the following over the years.

You can't be outside. What happens if you get stuck in the snow?

I will shovel for you. Go back inside now.

You are inspiring. You can get around in the snow? Amazing.

You need a plow for that thing.

You should get skis put under your wheels.

I am so glad I don't use a wheelchair. Snow must make your misery even worse.

You are putting yourself in danger by being outside. I will push you. Where are you going?

Multiple assumptions are being made on the part of bipedal people. A person using a wheelchair cannot go outside when there is snow, has poor judgement, and should at all times be accompanied by a bipedal adult. Of course this is all wrong. What snow does is empower bipedal people to assert their moral, physical and social superiority. The snow is used by bipedal people to think of themselves as saviors. They have embraced the charity model of disability under the guise of "help" they most likely absorbed growing up. All people who use a wheelchair have been relegated to a stereotype. Dependent, needy, incompetent. Here is a perfect example:
http://www.wktv.com/news/Picture_of_man_in_wheelchair_sets_off_social_media_firestorm.htm l All this man did was go outside to shovel snow. A neighbor took a photograph of the man and the story developed a life of its own. Moral outrage flowed. Bipedal people were furious. How dare a greedy landlord force a poor crippled man shovel his own driveway. Thousands of people shared the photograph on Facebook and other social media platforms. The response was predictable and wrong. There was no greedy landlord. Others had offered to help but the man declined assistance. This man was simply shoveling his driveway because he wanted to. A Facebook friend wrote:

so much public education to do. 'disabled are helpless. disabled are pathetic. disabled should die. disabled are shameful. disabled are inspiring. disabled are super-people.' the worst thing and maybe even least true thing, i sometimes think, is there is even such a thing as 'the disabled.' there isn't. it's a completely invented concept. just get over everything, make everything accessible, stop shaming everyone, stop shaming yourself---oh. yes. i am talking about changing the entire culture.

I am not sure education is enough. A prime reason the ADA has failed is because there is no social mandate for its enforcement. I would be a wealthy man if I got a dollar for every time I heard the ADA deemed "an unfunded social mandate". Just make everything accessible. This is radical. There is no desire to make the constructed environment accessible. People want to meet the letter of the law and that's it. People resent meeting even minimal compliance  required by ADA. Make everything accessible is is an ideal that will not happen in my lifetime.

I believe education is not enough. People simply do not associate disability rights with civil rights. The ADA is cool provided it does not cost too much. We get to pick and choose what is and is not accessible. Worse, we are easily mislead. The vast majority of what people learn and absorb about disability is wildly wrong. When I push a hard core disability rights as civil rights argument the backlash is swift and negative. I have been hissed at. I have been told I had better not bite than hand that feeds me. I have had senior scholars tell me "it is so nice you have made a career out of your disability". What angers people is that I am not conforming to their notion of disability. I need help and by God that help is going to be delivered even if they have to shove it down my throat. This plays out in a complex and counter productive way. Take the controversy surrounding the Mighty I wrote about recently. Link: http://badcripple.blogspot.com/2016/01/cripping-mighty.html I was not at all surprised that the Mighty received serious criticism from people with a disability. Suddenly parents of children with a disability felt unsafe. They were being attacked by people with a disability. Things got nasty very quickly. The  editors at the Mighty handled the controversy badly. A divide between typical parents raising a child with a disability and adults with a disability was reinforced. After weeks of fighting the Mighty doubled down on their inspiration porn approach. The editors banned many people with a disability from their dedicated Facebook page. What struck me as reasonable suggestions made by a wide variety of people active in disability rights were dismissed, rejected, or ignored. People like Alice Wong,  Elizabeth Jackson, R Larkin Taylor-Parker, Carly Findlay, Cara Leibowitz and others truly wanted to help. There was just one problem--the editors and parents of children with a disability did not like what we had to say. I do not have the interest or desire to flesh out the details of the story. For those interested I suggest the following link: http://carlyfindlay.blogspot.com.au/2016/01/an-open-letter-to-mighty-being-mighty.html

The Mighty represents why education related to disability rights is never going to be effective. The Mighty caters to the masses. The masses the Mighty wants to reach do not want to think about disability. They claim to have a ridiculous number of readers-- 80 million people read the Mighty! They have 1700 contributors. The masses want to be reassured--worn out and antiquated ideas revolving around disability are reinforced by the Mighty. The masses want to feel good and by God the Mighty will deliver. The Mighty has come under fire because they are not who they say they are. They are not real. They are not about a nuanced understanding of disability. They are not for all people with a disability. They are click bait. They want to make money. There is no difference between the stereotypical ableist news story linked above and a recent post at the Mighty titled "Man Modifies Wheelchair to Complete Our Least Favorite Winter Chore". Link: http://themighty.com/2016/01/man-modifies-wheelchair-to-complete-our-least-favorite-winter-chore/ All the Mighty did was change the spin of the original story that was published by Huffington Post. Link: http://www.huffingtonpost.com/entry/watch-this-innovative-man-in-a-wheelchair-plow-snow_us_56994d7ee4b0778f46f94aee The Mighty's spin on shoveling snow is ableist crap. Tim Taylor is the plucky crippled man who will "not let his disability slow him down... I still have a life time of goals... I just don't want to be a bump on a log". This is not helpful. This is not about real people. This is not a real story. This is inspiration porn. The Mighty has weathered the storm of serious criticism from people with a disability and concluded their business model is more important than the lives of those that critiqued them. The constructive criticism they asked for and received was rejected. The Mighty will continue to churn out story after story and undermine any progress for those  with a disability they supposedly want empower.

Disabled Bodies

Two days ago I read an interesting post at Crip Confessions. The post was titled "But Won't You be Ashamed? or Cripping Pasties". Link: http://cripconfessions.com/archives/2339  A little background is needed. The author is going to the 2016 AVN Expo and Awards in Las Vegas. Essentially she is attending the "Oscars of Porn".  What struck me as thought provoking was the following paragraph:  

Much talk of clothes and the like have provoked side conversations coming up, including one that included the title query. I have been very open about my plan to wear pasties and frolic. I explained this to an acquaintance, and one of their first questions to me was “Won’t you be ashamed?” They were baffled I would have the audacity to wear pasties generally, and especially among porn stars – who include those with medically sculpted bodies toward social beauty, rather than away like my medically enhanced body.

I will leave aside the issue of wearing pasties to make a more general point about disabled bodies. It is hard to appreciate the unique beauty associated with disabled bodies. To be more specific, it is hard for me to appreciate my body. Nearly 40 years of paralysis has taken a toll on my body and aging has not helped. I have surgical scars on my back; long railroad tracks that go from the top of my neck to the crack of my bottom.  I have another surgical scar on my hip. I have an ugly scar on my hip where I had a significant wound that nearly took my life. My left hip is dislocated and is a few inches shorter than my right leg. I have a sweeping and profound scoliosis. My fused spine has started to cork screw to the right. I suspect my hearing is deteriorating. I wear glasses and am profoundly near sighted. My body has been profoundly altered by time, surgery, and the natural aging process. Disability is a cruel in its glacial ability to change the human form. I know why people stare at me. Most people with an atypical body will understand the implication of those stares. Back to Crip Confessions:

With OI, I have a protruding sternum (which is its own sexual aid, but that’s a story for another day) in between my asymmetrical breasts that are, as one OI stated, east west boobs. Instead of pointing forward, they point to the sides. I’m fat. I’m compact in the core, and have relatively small extremities in comparison to my core. I have a short neck. My hair is in a middle stage of growing out, so a bit meh. And I’m not awesome with make-up. I use a wheelchair and will have a weirdo little service dog in tow. I’m likely missing other aspects of my body that they might be thinking; regardless the point is I’m not a typical person or a body-beautiful human.

I am assume OI is Osteogenesis Imperfecta. The disablement here is not relevant. The important thing I share with the writer is the fact I love my body. She truly loves her body. I truly love my body. This should be the mantra of all people with a disability. Again, back to Crip Confessions:

I love my body, even when it’s in pain or falling apart at times. Surely, it’s not every day that I see beauty but I damn sure try to shed the weight of internalized ableism. I deserve embracing my body, after too many years covering up myself in baggy clothes. I have spent so many years beating myself up about my body not conforming to standards of typicality.

Internalized ableism is deeply ingrained in our collective conscious. I know this because like all people I have internalized ableism. My ableist bias comes out when I least expect it. I look across campus and see a guy traversing campus in a wheelchair and silently think "that guy is screwed". My next thought is an amused sort of internal mocking. Once in a great while I wake up and see my wheelchair and think "what the hell is a wheelchair doing next to my bed". I then shake my head and think where did that come from. When these sort of ideas spring to the fore I think of Robert F. Murphy and his book the Body Silent. I know the books dedication by heart:

This book is dedicated
to all those that cannot walk--
and instead try to fly

My paralyzed body has empowered me to lead a very different sort of life. I have tried very hard to fly. My metaphorical effort to fly has hit many a speed bump. I have experienced things that no typical bipedal person could understand. I have flown over ableist bias with grace and dignity. I have also been hit by the same bias and been thoroughly beaten. Through good times and bad my body has endured. It has served me well. I would love to think my body has been medically enhanced for the alternative is decidedly unhealthy. Negative body imagery is what far too many women endure. In theory I have a healthy perception of my body. I understand I am different. I adapted to paralysis long ago. It is just part of life. Despite the love I have for my body I have a confession to make. I do not like to look at my body. You will not find a mirror on the wall in my home. My image reminds me of being the other, a fact when I am in the comfort of my own home I choose to ignore.