Day 21 in Central New York

I have moved to a very pretty small town in Central New York that I prefer to remain nameless.  The town has one main drag that runs from a gorgeous lake for about 10 blocks. The word picturesque comes to mind.  I am very lucky as I am a few miles from town and right on the lake. Better yet, I am on the quiet end of the lake. I am happy and getting much stronger physically. My home is on a very steep hill and I am developing more functional strength in terms of wheelchair pushing power. There is a flat area outside my door and the view from my living is mind boggling. While I am pleased with my living situation. I am also a bit taken aback.

The gorgeous town I live in is grossly inaccessible. I have been to may such inaccessible towns. They dot the landscape of America from coast to coast. I have driven to all the small neighboring towns within a 30 minute drive of my home. Few are as pretty as the town I live in. All are far more accessible. I suspect there is great wealth in my little town. Some homes are nothing short of show case properties. On a regular basis I pass cars that are very costly. I have read a bit about the history of the town and suspect that there is much old money. I have learned so called old money does not like change. Change meaning the historical nature of the town is sacrosanct. Ramps, curb cuts, and wheelchair access would mar the historical element the town is known for. I have heard this line of reasoning for decades. I call it snooty reasoning. Wheelchair access need not mar the historic buildings the people who live in town fiercely protect and are proud of. This is an argument I have entered into many times and it is a red herring. The argument is lost once you engage in a  discussion of historic preservation. The all important subtext is the firm belief that wheelchair access is a choice; a matter of charity in fact. This is wrong. The fact is wheelchair access is a matter of civil rights.  Few people get this critically important fact. The ADA, now almost 25 year old, is civil rights legislation. It is enforced by the Department of Justice. The town I live appears to me to be a perfect example of how the ADA has failed to resonate culturally. People do not value wheelchair access nor the existence of people with a disability. Access is not a priority and instead a nuisance. Access is in fact a threat to the town. How dare I bite the hand that feeds me. The town can pick and choose what is and is not accessible. Of course the fact they know nothing about disability is not considered. Slap a few blue wheelchair logos all over town, provide handicapped parking and the problem is solved.

As I write these words, I am in the public library. It is a nice building. It has what I call fake or old people access. There is a small parking area near the front door. There is one handicapped parking spot and two 15 minutes spot. I have walked past this little lot off the main drag and have never seen an open spot to park. There is additional parking in the rear of the building. It is a gravel lot that surely does not comply to the ADA. Parking in the back requires one to essentially circle the entire building to get to the front door. The path is wide but uphill. The town is responsible for the lot and plowing. The library is responsible for shoveling the walk way. The odds snow removal are coordinated is nil and we are smack dab in the middle of the snow belt. Getting in the door of the library in the depths of winter will be a challenge in the extreme. As I got my brand new bright yellow library card I noted that access from the back is far less than ideal. I noted the parking lot is not compliant with the ADA even though the lot was built four years after the law was passed. This observation was quickly met with: "That is something you need to take up with the town. We are not responsible".  Not exactly a helpful comment.

Here is my dilemma. I am a new to town. I am in the library to learn about the history of the town. I have zero clout. I am an outsider.  What gets me is there are little blue wheelchair logos all over the library. leo present are multiple violations of the ADA. But hey those blue wheelchair logos make the bipedal hordes feel good.  At the library there are two sets of electric doors. Two very expensive doors. As I enter, there is a library cart filled with books that blocks easy access to the door open button. The desk area that is lower at the check out counter is filled with folders and news about upcoming activities. After noting the lack of wheelchair access and the fact the parking lot is not ADA compliant I have pushed my luck. The big welcoming grins I got upon entry I know will turn to cold stares if I ask anything more about wheelchair access. Clearly I am a problem the librarians do not want to deal with. They are all polite, a trait to central New York that will take some time to get accustom to. Behind these smiles however is an eagerness to explain why there is no appropriate access to 90% of the buildings in the town I now live in (the 90% estimate is generous). The lack of access I am told is a very long story. Sorry but no. I do not care about the story that explains why there is strong resistance to make the town accessible. Other local towns I have visited at least try. There is no effort in this town. There is an animosity I feel to wheelchair access.

I must note I have been a resident a grand total of 21 days. Who knows, I could be wildly wrong. Now if I had a cell phone that worked in my home I might actually be able to investigate and advocate for change. I expect my cell phone problems to be solved shortly. What I do not expect is progress in my town.  For real progress to be made a fight must ensue. This fight would be two pronged--legal and cultural. Without a forceful push for access nothing will change. Not sure if I have the stomach for this, the knowledge base, and certainly not community support. For now I am going to work on my knowledge base. Time to brush up on my local history.

Disability: A Cure for Developing a Big Ego

I am a bit more settled in. I can get to the grocery store without the GPS directing me. I know great places for Kate and I to walk. I am figuring out bike paths. Why I even found a great hot dog lady in a nearby town. More importantly I am putting the finishing touches on my classes. I am eager to teach my graduate class in bioethics and disability.  I look forward to getting back to the honors department this semester. In short, a new routine is being established. I was feeling pretty good about life until yesterday. At a local strip mall in Syracuse I was doing some shopping. I made several trips in and out of various stores. Shoot, I even found a spot in handicapped parking. My head is swimming and I am following a long list to the letter. On one of my forays I noted a group from what I assumed was the local group had parked near the entrance to Wegmans (a great supermarket chain). There were about 8-10 adults with a dizzy array of visible disabilities outside the store entrance. I was pleased to see this group out and about. No doubt the logistics involved in such a trip are daunting. I was not really paying much attention to them. I was far more concerned with not getting hit by a car in the parking lot. I head in the direction of Wegmans where the residents of the group home were gathered in a small huddle. Suddenly I feel a person grab the back of my wheelchair with authority and yank my wheelchair in the direction of the group home residents. This is not easy to do as I have no handles on my wheelchair so people do not do what this person has done. At the same time I am scolded "How dare you leave the group. You could be hurt. You know better. I am taking you back to the others and do not move". The tone of this woman's voice is nasty--think drill sergeant like. She has what she thinks is a command presence. This might work in the military and in Catholic school but not among the public. As we are traveling to the right I take my fore arm and with significant force bash my forearm against her arm. She instantly let go of the wheelchair and I spun around obviously angry. She was shocked but not hurt (I could never harm another human being). A very unpleasant though brief conversation ensued. She was not impressed with me. I was deemed rude and nasty. She told me she made an honest mistake. I was deemed over sensitive if not hysterical. The tone of her voice remained dominant as did her body language. Her apology was not sincere. She was deeply annoyed with me. I was essentially an  uppity cripple. How dare I assert myself. How dare I assert the fact I am an autonomous being. How dare I be human!

The above incident was unusual. It took place in Syracuse where there appears to be a small but notable number of people with a disability. Syracuse University is also well known for its championship of disability rights. I remain upset about what took place. It was not the rude behavior of the woman in question. It was not the assumption she made that all people live or are part of a group home. All of these are objectionable. What bothered me was the extreme authority she freely wielded. If she treated me in this manner how did she treat the residents of the group home? Not well I assume.  This is not acceptable and it kept me up much of the night. Exactly why do people with a disability routinely get treated like shit? Why do the hordes of bipedal people assume my life and the lives of all people with a disability lack value? Worse why is such a discriminatory person working in a group home? Yes, I had good reason to toss and turn last night.

I am Distressed

My beloved lab kate is nervous and distressed. She knows major changes are afoot. Boxes abound and furniture and rugs disappear by the day.  While I am not distressed by my move I am nonetheless feeling distressed today for two good reasons. First I read Steve Kuusisto post at Planet of the Blind. As Heather Kirn Lanier noted the post is so good it hurts to read. I would concur with this assessment and would add in a healthy dose of searing.  Here is what Kuusisto wrote today in full: 

I am distressed. Blindness isn’t merely a lack of vision–its a fight or flee carnival, sequential, unpredictable, sometimes rather frightening. And even the small things, paying cash in the market, become tangled as my cash falls to the floor and I fumble publicly down where all the shoes have trod, the impatient shoppers behind me, no one offering to help, and my skin undergoes electrolysis and groping I feel I could weep. I know I’m not supposed to say this. The core of speech is reserved for nuanced politics. One is supposed to say disability is merely a nuisance. That’s the politically correct thing. I’m just like everyone else but with a few added musical notes. But this is of course ridiculous when you’re down on the public floor scrambling after two dropped quarters. I escape with my groceries. Walk in the sunshine. “The day will get better,” I say to no one in particular.

But its fight or flee–all day; a fairground of anxieties. Crossing streets. Getting to the other side safely. Getting there with your dignity. The dog helps. Squaring your shoulders helps. But then the next place you go has a revolving door. You can’t get in. When you tell the management they need a “disability friendly” door they tell you with their Rococo eye rolling, they don’t care. “Go away,” they say, though they don’t really say it; but they do. You continue on the street of public life. You shamble among the rags and masks of the ordinary people. Everyone looks at you. You’re a half vagrant out in public blind person. You’re wearing your good suit with the purple tie. You’re walking around with rain in your heart.

 Strangers ask how much you can see. You make jokes. “You look like Ingrid Bergman; Cary Grant.” Young people don’t know who they are. It doesn’t matter.

The books I downloaded this morning from Amazon aren’t accessible. I wasted my money.

After many languages I’m still an orphan.

I live in an American city without good public transportation. I must rely on taxicabs more than I wish. The drivers are desperate people. They talk about desperate matters with broken words. Most of them listen to “hate radio” and I smile from the back seat under my big sunglasses.

Do you see? What do you see? I’m waiting for happiness to slowly crawl in…

Link: http://www.stephenkuusisto.com/uncategorized/disability-and-the-star-in-my-head

To borrow Kuusisto's words it is hard "waiting for happiness to slowly crawl in" to the hearts of so many people with a disability. I started my day wondering is happiness even possible? I loved the poetic idea of rain in one's heart. A water laden heart is heavy and tired. I so get what Kuusisto is eloquently writing about. Nothing is easy for people with a disability.  The grocery store is always an adventure. Anonymity impossible. Why just today I was lauded for my "inspiring" ability to carry two plastic bags to my car. Mass transportation is always an adventure. Flying on a plane is an invitation for abuse. Accessible housing is like looking for a needle in a hay stack. The worst part of all this is that we people with a disability are expected to put a smile on our face and make those violating our civil rights feel okay. In individualizing the "problem", namely my very existence,  negates the inherent civil rights violation against a class of people. And yes people with a disability are indeed a class apart. Read the ADA--it is not about buildings and construction codes but rather civil rights legislation. I doubt less than 1% of the nation realizes this and I bet most people with no disability experience  would think equating the ADA with civil rights legislation is political correctness run amuck.

While I was distressed by Kuusisto's words, I kept thinking why. Why almost 25 years post ADA does the law not resonate? Why are people with a disability not in positions to make effective social change? Why is disability rights not taught at every school in America? I then read another blog, The Feminist Wire and a light bulb went of in my head. In "On Feeling Depleted: Naming, Confronting, and Surviving Oppression in the Academy". Here is the second reason i am distressed: this post gives a perfect discussion of why people with a disability are not scholars. Link: http://thefeministwire.com/2014/08/feeling-depleted-naming-confronting-surviving-oppression-academy/ Believe me, scholars with a disability are a rare species. I would suggest we are an endangered species. The proverbial Ivory Tower social environment does not want us to exist. We are a burden and costly one at that. We are not wanted as professors or as students. We do not learn in the prescribed typical manner. We need reasonable accommodations--in other words we make people think about difference. The people in positions of power that usually make the designs about what is or is not reasonable know nothing about disability. And my God the time it takes to make reasonable accommodations moves at a glacial pace. That means up and coming scholars with a disability progress at a glacial pace. Most give up--a reasonable response when confronted with bigotry. 

In the post at The Feminist Wire the authors compare Stuart, a well prepared doctoral student from a privileged background with a typical no disabled body with a student with a disability who is also a doctoral student.  I quote:

The academy wasn’t just built by people who look like Stuart. It was built with his body in mind. Stuart doesn’t have to worry about how he will get in/to his classrooms. He just shows up, opens the door, and walks right in. Stuart doesn’t have to make endless calls to Disability Services, Parking Services, Dean’s Offices, and the like, just to secure a disabled parking permit to be near his classroom. He doesn’t have to think about getting up that hill. About the potential un-shoveled sidewalks and streets. About the ice and slush that jam in a wheelchair’s tires.

Stuart isn’t watched or marked. He doesn’t have to hear the whispers about his use of the “Handicap” button to open doors. Doors that are too heavy for this body. He doesn’t have to carry a cooler of food and medicine to class and with him at all times to regulate his blood sugar. He doesn’t have to spend days making special food so that he’ll have enough for the school week. For class, for unexpected meetings on campus. He can spend time reading Marx for fun because his body doesn’t require the amount of work or time that this body does.

People like Stuart can glide through academia not thinking about the ways the buildings they use, the classrooms they occupy, and the events they attend exclude certain bodies. Stuart’s body doesn’t just not experience battle fatigue because of dis/ability, or race, or class, or sex, or gender; Stuart’s body doesn’t get physically fatigued. Because for him a door is not an obstacle. Finding a gender-neutral and accessible bathroom is not an obstacle. Getting to campus is not an obstacle. Leaving the house is not an obstacle. Using a computer is not an obstacle. People like Stuart are not tired of fighting because they don’t have to fight for their bodies to exist in the spaces of academia.

This is what no one that is not forced to deal with a disability wants to think about or acknowledge. Disability is a needless time sucker. Reasonable accommodates are always a hassle. Parking permits, bathrooms, accessible classrooms and the list goes on. These obstacles reveal my body is not wanted. If we desired to make the academy accessible I would not be forced to make dozens of phone calls and fight tooth and nail for an accessible bathroom on the floor I am teaching on. The above post perfectly describes the typical problems people with a disability encounter. It take an unusual person to push back and scholars are not known for pushing back. Hence most aspiring scholars give up. I get this. I almost gave up myself. I did not give up because I had parents and an established scholar like Robert Murphy at Columbia to support me. As a graduate student Murphy told me when you have a problem call me and I will call the provost. Problems got solved instantly. Not many are this fortunate. In fact I will speculate virtually no aspiring scholars today have this sort of support.  

There is a reason why there are precious few scholars exist. No one to my knowledge is addressing this problem. Hence each year I end my class with a question: Have the students ever had a paralyzed professor before? In twenty years not a single student has answered yes. The point is there is no desire to develop and foster aspiring scholars with a disability. The animosity directed to students with a disability is getting worse not better in the last 25 years. Reasonable accommodations are seen as costly and unfair to typical students. I have been told this directly by my professorial peers. So yes, I am distressed today.  I am distressed for good reason. I am not however going to give up. There is a reason I embrace the moniker Bad Cripple.

Culture is Inscribed on the Body

When I teach my class body art and modification I repeatedly use one line: culture is inscribed on the body. I also use the simplistic but effective analogy to an American traveling abroad. When one travels abroad it is easy to pick out an American. We as a group tend be loud. We tend to be fat. We tend to think every human being on the planet speaks English. We expect to be served. Of course theses are broad generalizations. The point I am trying to get at is that for some of us culture is indeed inscribed on our body. My body is scarred. I have train tracks running up and down my back from my neck to the crack of my ass. I have a scar on the back of my hip. I have large ugly scar on the front part of my hip.  My left hip is dislocated and as result my left leg is short than my right leg. I have a severe sclerosis. I have a cracked tooth and need dental work. Let's put it this way: there is not one symmetrical part of my body. I am scarred and distorted from head to toe.

Survivors have scars. I have scars. I have a body that tells a story. It is a story of survival. I took the best and worst that modern medical care can dish out. Add in a healthy dose of aging and I am battle worn.  I look at my body and cannot help but state to a degree it  is wrecked. This does not bother me one iota. I plan to do further damage. I want my body to continue to be used and to a small degree abused. I want to get everything out of my body. When I am old I want to slide into death knowing I got every last drop of energy out of my body. I want to use my brain to the best of its ability and foster social change for all people with disability. Damn the torpedoes full speed ahead.  Live life to the fullest. Go ahead take chances. Take leaps of faith. We only get one shot at this wonderful thing called life.

Compassion and Choices: Oblivious, Rude or Misleading?

As I have been packing up box after box I have been thinking about a disturbing video created and widely disseminated by the pro assisted suicide group Compassion and Choices. Frankly I found the video shocking. It is a perfect representation of why I find the debate concerning assisted suicide so frustrating. For many years I have sought to find common ground between those who oppose and those that support assisted suicide legislation. I think my quest for common ground is hopeless because two well worn stereotype exist. First, there are people such as myself. I am a self righteous crippled bastard with a chip on my shoulder who denounces and attacks others who want to control the circumstances surrounding the end of their life. In particular, I want other cripples to suffer just like me and go out of my way to attack others who simply want a good death they can control. The second are the reasonable scholars and average citizens who merely want to control the end of their life. These people want to eliminate suffering for the terminally ill. Such advocates wear buttons that state "My Life, My Death, My Choice".  The idea that ending one's life is a tight and sacrosanct.

I want a nuanced debate about the end of life. I want to witness a national debate that addresses how we approach the end of life. No one wants a human being to die alone and in pain. Sadly, this happens all too often. In the ABC-CLIO Companion to the Disability Rights Movement Fred Pelka wrote disability rights advocates "insist that decisions about suicide, just like decisions about aborting  a disabled fetus, should not be made based on stereotypes about the quality of life with a disability. Rather than fight for their right to die, they instead prefer to fight for their right to live with dignity and independence".  This is exactly why I am upset about the Compassion and Choices video.  They are utterly reliant on a disability archetype: disability is bad. People with a disability live a diminished life. People with a  disability are suffering. People are dying in pain because of unbalanced bitter cripples like me. The result of this faulty line of reasoning is the below Compassion and Choices three and half minute "celebration" of the ADA.

What does Compassion and Choices do? Find the tiny minority of people with a disability who fit the stereotype described above. Compassion and Choices exploits people with a disability and when a person such as myself objects I am dismissed as a crank. The fact is we humans are very social. We live and die in a social setting. We do not die in a social vacuum. Our deaths have social meaning. We typically die in a hospital or nursing home: both are total institutions and feared. In terms of end of life care, symbolically a person with a disability represents a reminder of the frailty of life. As such, we are an affront to others without a disability. We are feared. We are an ever present reminder that disability can be acquired at any time over the life cycle. Compassion and Choices and other  advocates for assisted suicide exploit severely disabled people. The script never changes just the names. For the skeptical I suggest you read about Larry MacAfee, David Rivlin, Christina Symanski, Tim Bowers, Dan Crews, and many unknown others. The all important question to me is why. Why do people with a disability want to die? It is because those that live with a  disability are discriminated against. Yes, 24 years after the ADA was passed into law ablism is rampant. The ADA has not resonated culturally nor has it ameliorated  the grim reality of life with a disability. Most people with a disability live in or on the edge of poverty. Most are unemployed (70%) and uneducated. A shocking number of people with a disability are socially isolated in the extreme. Physical and mental abuse are rampant. As I said, life with a disability is not easy.

Sara Myers and Dustin Hankinson are new. The names change but not the methods utilized by Compassion and Choices. How others fail to get this is a mystery to me. When I see a person with a disability or an elderly person with significant physical or cognitive deficits I think they are hard asses. Those people have a strong will. Life was likely not easy but they endured and I hope thrived.  I imagine what their life is like. How did they adapt and what can they do? I only consider what people are they capable of doing and dismiss what cannot be done.

To end, as I move around my home I have found myself thinking about the buttons worn by assisted suicide advocates are ironic: "My Life, My Death, My Choice".  My, my, my in triplicate. The word narcissistic springs to mind. Could it be people are that selfish? Could people desire autonomy and control that much? "Mine Mine Mine", the childhood refrain, has been repackaged by adults who are afraid of disability and death. I hope I am wrong for I believe all human beings lives have value. All people have the right to live. That includes a baby taking his or her first breath to the elderly person taking their last breath. Death is not a right it is physical inevitability. It is life that holds meaning.

On the Move

July has been a hectic month. I am moving. I do not like to move.  This move has been a long time coming. In fact my life has been a roller coaster the last few years. High highs and the lowest of the lows. My house, a 1959 prefab, was a great place to raise my son. I have many fond memories but it is time to move on. I intend to be a rolling stone for quite some time. I am weary of being a home owner. I do not understand the over attachment to a place and certainly a home. It is not where one live but how one leads life that matters. Home ownership is misleading--a capitalistic myth. One owns a home but what a person really does is manage a building. Well my building is a pain in the ass. In recent weeks my house was hit by lightening and blew out kitchen appliances and electronics that were not unplugged. Just a few days ago the main pipe from the well to my basement burst. At least a foot of water was in my basement and when I opened the door was met with a small tidal wave of water. The plumber noted "you have a great well pump. It will pump about 20 gallons a minute." Sorry I am not impressed. What does impress me are memories. I cherished every minute raising my son. My home, the building I live in, was a tiny part of raising my son. In fact I will miss a tree the most. A purple plum tree. We planted it our first spring in the house. My son was in his digging phase. He dug a giant hole for a very small tree from the Home Depot that comfortably fit in our car.  We bought peat moss and read about how to plant and care for a tree. We trimmed that tree every spring. My son grew like a weed and so did the tree. My son is a tall and slender man. The purple plum tree is full and large. Like my son a mature specimen. This spring some 17 years later he needed a ladder to prune some dead branches. The tree is taller than our house. This is a memory that will last a life time. 

My move is the reason why there have been few posts in July. I have spent much time discarding the cultural residue, the material items, of our life. This has been liberating. My move will be very simple. Many book boxes. Kitchen stuff--lots of kitchen stuff. No furniture. No chairs, desks, dressers, framed pictures. A clean slate if you will. But even this minimal move has consumed much of my time. So be patient with me. I will get up to speed in the weeks to come. I have much to write about. I am deeply disturbed by what I have been reading about with regard to assisted suicide in the Unite States and especially in the UK. Compassion and Choices has disseminated a video in "celebration of the ADA". To say I am stunned is a major understatement. Talk about nerve! I am excited about the upcoming semester. I will be teaching in the honors program again as well as graduate students. I intend to seriously challenge the graduate students. I will also travel and give many presentations. Ah, the life of an academic. You gotta love it. 

Below is evidence of my move. My living room is the staging area. 

More on Our Failure to Educate People about Disability

I recently came across a blog that is funny and poignant. The blog, "What Do You Do Dear" is written  by Mary Evelyn the mother of a young boy who has spina bifida. Evelyn is an Orthodox Christian (a term I am unfamiliar with) and a school librarian. She found out her son had spina bifida during a routine 20 week ultrasound. Since the day their son was diagnosed in-utero she and her husband have had a crash course on not only his physical impairment but about disability in general. Evelyn's level of awareness regarding disability makes for a fascinating read from the point of diagnosis to the present. Evelyn's knowledge base about spina bifida grows daily as does the level awareness about disability in general. I highly recommend this blog. Link: http://www.whatdoyoudodear.com

The most recent blog entry, "A Leak in the System: When a Little Girl Felt Sorry for My Son", made me consigned to the fact I will not live to see the day when people with a disability are truly equal. Not equal by the letter of the law (ADA) but rather by American society. I will never be ordinary.  I will always been seen by others, typical others, as a tragic figure, one who is deeply stigmatized. All people of course do not think this way and I do my best to assert my equality. This is an uphill and sometimes even a losing battle. But fight I must for if I do not who will? I do not fight for myself. I fight for the guy behind me. It has been and remains my hope that no human being experience the sort of discrimination I have experienced. 

I am deeply pessimistic about the future because secondary schools teach children all the wrong lessons about disability. The term "special education" surely does not help the perception of disability. Nor does the continued use of segregated schools and school transportation industry. Too often students with a disability are shunted off to resource rooms. Lip service is paid to "mainstreaming". Basic access is problematic at best. Side accessible entrances to schools abound as do locked doors that place students and disabled adults in a position of dependency. With regard to transportation to and from school and class trips the norm remains for children with a disability to ride the short bus. These are flagrant examples of segregation and I will limit my discussion here as far worse things take place in schools (Abuse, physical and psychological, are commonly experienced by students with a disability). A lesson is being taught  nationwide. Children by the time they are in 1st, 2nd, or 3rd grade have learned a basic fact as it relates to disability: segregation is the norm. Worse, it is socially acceptable. "Special education" buses are routinely referred to in secondary schools as the "retard bus". The consequences of a segregated system are profound. Disability children are taught is bad. This lesson is taught at schools and in every day life. Mothers routinely tell children  when they see a person using a wheelchair "to watch out". I have heard this line for 37 years. Bipedal people routinely leap out of my way as though I am a locomotive going 75mph and am out of control. The fact I am 20 0r 300 feet away form them does not matter. A wheelchair is to be feared. Disability is be avoided at all costs. My wheelchair is thus akin to a portable social isolation device. 

The above thoughts were prompted by Evelyn's post in which she writes about the reaction of a cute six year old girl who saw her son. 

She walked up to my son, as he wheeled in circles outside the sanctuary after church, and planted herself squarely in front of his wheelchair. They studied each other closely. He waved hello. 
And then, without taking her eyes from his face, she said  "I feel sorry for him." 
I felt it more than I heard it. Deep in my stomach, in that place right below my breastbone. The place where I keep all my fears and my sadness. I felt it like a kick in the ribs.
Children ask all sorts of question about my son.
Why is he in that? Why can't he walk? What's wrong with him? Will he need that thing forever?
But questions are easy. For children, questions have answers. 
"I feel sorry for him" is not a question. It is a statement of fact. A revelation. A public disclosure of something I know to be true. Although I fight against it and try to believe otherwise, I know there are many many people who feel the same. Many people who see my son, smiling and spinning and exploring his world, and they feel sorry. They feel sadness. But adults know how to filter. We know what not to say. We know to bottle up. This little girl was a leak in the system.
A system that tells her my son's wheelchair is "very sad."
A system that tells her he is a "poor thing."  
A system that uses words like confined to, suffers from, and bound.
A system that prefers to see people like my son as victims, as recipients of charity, as less-fortunates waiting to be healed, rather than seeing them as neighbors, colleagues, teachers, and friends.
A system that tells her my son smiles "in spite of" rather than simply because he too is a child and has access to all the same earthly wonders that she does. Link: http://www.whatdoyoudodear.com

This breaks my heart. I do not feel bad for Evelyn's son. He is going to encounter far worse prejudice in his life time. He needs to learn how to fight back against such ignorance and bigotry over the span of his lifetime. I do feel bad for Evelyn. There is absolutely nothing she can do to change what she calls the system. She cannot protect her son from disability based bias. Evelyn notes she is only one person--a sentiment that I can related to. I am one person too and I am not afraid to admit there are days I cannot leave my home because I cannot tolerate the inevitable social denigration that comes with interacting with others. But we, meaning we people who reject ableism, must multiply and educate. We must do this daily. It is a lousy job. It is depressing to be surrounded by bipedal hordes who do not know a thing about disability but think they know all. Worse, all they know is wrong. All they have been taught is wrong. This is exactly why the story Evelyn penned is so sad. A six year old with seven decades of life ahead of her is unknowingly a bigot. I have no doubt the girl in question can be educated. I am sure her views can change. The point here is she has been taught and absorbed lessons that inherently destructive to a class of people. She might change her views. She might not if she has no direct experience with disability. For it is that human connection to a loved one with a disability that represents hope for the future. Evelyn ends her post with a feel good story.

Then last week, sitting by the pool with my husband and my splishy-splashy little boy, I heard it again. This time from a teen, maybe 19-years-old. He had seen us there a few times. Today he had a girl with him. A girl he liked. I could tell. He gestured in our direction.
"Something's wrong with that kid" he whispered to her. "Did you see his back? He can't walk. So sad..."
I felt it more than I heard it. And I put my head down waiting for her reply. Her agreement. Her inevitable recognition that yes, my child's life is very very sad.
"It's not sad" she said, looking at my son with so much kindness. "My brother was in the Special Olympics. Nothing sad about it. That kid is cute."
And then my heart turned to mush and I closed my eyes to keep from crying.
I wanted to hug her. I wanted to tell her how rare she is. And how lovely. I wanted to believe she was once a little girl in a gauzy white dress.
More than anything, I wanted to thank her for reminding me that I am not the only one who sees my son for who he is. Unconfined, unbound, human.
I am only one person.
But I am not alone.

Evelyn is not alone nor am I. I am not sure how Evelyn felt after she wrote her post but her words depressed me. Initially I was ready to pump my fist and say "YES!" Then reality set in. Why is the teenage girl described above rare? Why are we human beings so quick to judge others on something as inconsequential as wheelchair use? Really, are we human beings that shallow? Are we that unwilling to open our minds to others who navigate the world differently? Are we unable to incorporate and educate those that think differently and not at the typical, perhaps demanded, pace? The answer to all these questions is yes. By itself this is damning to our educational system and the culture that created and perpetuates it.  I for one will spend the rest of my rejecting such a destructive system and doing all I can to fundamentally change the way people perceive disability.  Education I am sure is the key. We need to do better. All of us must do better. A class of people are actively discriminated against and lives are at stake.