My spring semester at Syracuse has been unique. Never in my teaching career have I had such a semester. I missed many classes due to family issues and minor illnesses. This is way out of character for me. I typically go several years without missing a class. I also rarely get typical illnesses, such as the stomach bug that I had. When I get sick I usually do it in regal fashion as in become critically ill in the middle of the night on a national holiday. Yes, my timing is impeccable.
The boring preamble above is my way of edging my way into a new and long delayed post. I am not happy. I am experiencing a general malaise affecting my entire life. I am not inspired to write. I am not inspired to cook a good meal. I am not inspired to ride my bike. I am not inspired to go for a walk. I am not inspired to hike. Essentially I am in neutral. Some of this I can blame on my schedule and mourning brother's death. I could state I am busy as is everyone I know. Not all these factors come into play for a global malaise. I just am spent. I taught a class entitled Taking on Ableism 24/7. I got riled up over this class. I loved the students in my class. My excitement quickly dissipated into a lack of action and writing. I feel as though I am stuck in quick sand and not able to initiate action. The most obvious result of my stagnation is an unacceptable lack of posts. I am after all the self professed bad cripple. Bad cripples are active people. We are strong and unafraid to buck the tide. We assert ourselves and take positions that are unpopular. I still do this but I am feeling very much alone, isolated, and apart from the sea of humanity that ebbs and flows like the tide. I am the rock far off in the distance. An unyielding rock, a danger to others as I am too ornery to acquiesce. This I suspect is my problem. It is why I printed and have carried around a post that perfectly articulated why I am unhappy and not inspired. Link:http://thoughtsnax.com/2015/03/13/dignify-this/
I'm done. I'm done being polite. I'm done shutting up about good liberals who seem to get every sort of liberal rights and civil liberties except the equality of rights, respect, and dignity of our brothers and sisters with disabilities. I'm done with disability rights as a "when get around to it" right. I'm done with people who are willing to use respectful terminology except--big sigh--avoiding using the word "retard" as just one step too far forward thought control. And I'm done with "civil rights" law firms in inaccessible offices and "civil rights" lawyers who don't hire interpreters. I'm done.
I too am done. I have no interest in hearing a long story about why a building is not accessible that was constructed in the post ADA era. I have no interest in committees that are formed to address the lack of access at any given university campus. I am weary of ADA lawsuits that take over a decade to resolve. I am sick of hearing people tell me we never thought about an access issues. I do not want to hear I am the first speaker we ever had that had a disability and refused to speak at a small desk next to an impressive speakers podium. I do not want to be harassed when I go out my door. I want to be able to go to the bike shop, get my bike tuned up for the spring and not be called inspirational by people I never met and have not seen me ride. I want to get in and out of my car and not be stared at. Even more basic, I would actually like to be able to park in handicapped parking without driving around waiting for a space to be open or not cluttered with shopping carts making it impossible to park. In short, I have no desire to interact with bipedal people our physical environment is designed for. So let me be even shorter and more direct to those that accost me or other people with a disability on a regular basis regardless of whether we are being praised as being exceptional or accused of being the anti Christ. Fuck you. How is that for direct?
There can be no miscommunication here. Disability rights and civil rights are one in the same. I have no interest in hearing a long story about access. I want a yes or no. I will not engage in a discussion about the law or silently accept ignorant comments about how a given building is grand fathered in and exempt from the ADA. I do not want to hear Compassion and Choices broadcast how much they care about vulnerable others and yet actively push for assisted suicide legislation. All the protections under the law cannot protect the elderly, disabled and terminally ill. I do not want to talk to members of the Green Party and have neo liberals tell me they support assisted suicide legislation and disability rights. Sorry, but the logic is deeply flawed. And forget the ACLU--you know that liberal organization of lawyers devoted to nondiscrimination. I am no lawyer but I find it fascinating and disheartening that the ACLU supports assisted suicide legislation or at best cannot wrap their heads around the fact people with a disability are discriminated against every time they try to access health care.
My life matters. I love my life. I love teaching. I love the sunrise every morning. I value my life. I accept this as a given. Am I having a hard time at the present? You bet I am. But that does not mean something as simple as "Harvey Day" makes me happy. For those who do not follow baseball Harvey Day is when the dynamic pitcher for the Mets takes to the mound. I take great pride in the many students I have who are about to graduate from Syracuse and will be giving presentations about their final Capstone projects in the Hall of Languages--my favorite building on campus. Do others see me in this light? Not a chance. I am a failure with a stigmatized identity. This gross misconception shocks me. The utter lack of social progress in terms of disability rights 25 years post ADA leads me to shale my head on a daily basis. I refuse to engage in banter with others who think they support disability rights under the guise of non disabled privilege. My life is radically different simply because I cannot walk. Such a minor thing it is to be bipedal; but not to those that walk. Walking is required to be social viable and is key to being valued. The irony to me is there are plenty of bipedal people who are far more disabled than I am but I digress.
The good news is I have a cure for my my malaise. I am going on a long road trip. When experiencing a deep slump I get in the car. Road trip! This road trip with my son is a doozy. We are driving to Wyoming. My son got a job as a seasonal worker in Grand Teton National Park. As he said, "Dad, who cares what I am do this summer. I work 40 hours a week and can camp every weekend in one of the most beautiful national parks in the nation". This logic is sound. It makes me think that growing up with a father who is paralyzed presented manageable social stigma and enabled a typical child to learn some real life lessons. I wish I knew how to impart the lessons he learned to others. Bigoted others who even in my middle age years harass me daily.
Hi Bill (may I call you Bill, even though we have never met?)
ReplyDeleteYou wrote this piece on the 45th anniversary of the accident that resulted in my quadriplegia.
Except for your apparent deep personal despair, it could have been written by me.
In Oz, as apparently in the USA, people continue to ignore their obligations under our Disability Discrimination Act with the same pathetic excuses and long drawn out discussions which really boil down to "we can't be bothered because it will cost money".
Enjoy you trip, enjoy your son, come back refreshed and full of fight. The world needs you.
All the best
John
I admit tears reading this. Not sympathy although I do have that but just fellow feeling. I can walk about etc but I remember how it was when my husband was alive and he expressed almost the same as you. My youngest has chronic Lyme and is too often housebound for lack of energy and pain...I am twice her age and I bring her groceries, clean her floors -and she has nobody apart from her husband...no friends nothing. It's as if she didn't exist and on top of this as with so many she suffers pain etc... it's so bloody fucked up - and I am not big on swearing... I get worried that if I am not here what will happen and I felt like this with my husband...I was able to soften the edges of suffering and I see this as my main thing in life...Like John am in Australia and it is the same here...maybe not quite so harsh but it is bad... don't know solutions but just hope when you do the trip things life for the time. But what you are expressing and feeling is pretty much how it is for so many...thanks
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