I am just back from a conference at Union College entitled Disability and Ethics Through the Life Cycle. As I have noted I am not inclined to attend conferences. In part I am simply not that social and frankly the costs of attending conferences is significant. I prefer to spend my time and energies elsewhere. Regardless, I enjoyed as much as I can enjoy any conference. Though in this case I returned rather sad. I wonder how much, if any, progress was made at the conference I attended designed to find common ground. I saw first-hand a huge divide between activists and scholars, particularly between disability activists and bioethicists, exists. What struck me was the political aim and goals of the disability activists and the contrasting focus on scholasticism on the part of bioethicists. A divide exists when one should not. Many on each side share the same goals, not all for sure, but enough for a constructive dialogue. I am not sure such a dialogue will be forthcoming any time soon. However this is not the reason I am sad. When I got home I went on line to read the many websites I surf that report disability related news. Much of what I read was strikingly bad. The reports I read could be perceived as isolated stories. Here is what I read about:
A Colorado teacher duct taped a student with a disability hand to his wheelchair. This was his only means of communication.
A bus driver was fired for bullying a 4th grade student with Asperger's Syndrome.
A mother was arrested and is accused of starving her five year old son to death who had cerebral palsy.
In Philadelphia a man with a disability had his wheelchair and dog stolen from him.
The Wall Street Journal reports that states are slashing Medicaid and people with a disability are suffering more than any other population.
Where was I when all of this happening? At an academic conference doing nothing. All these news stories appeared over the weekend. I bet they were widely read and yet I bet no one else will connected them together. To me, these stories are the norm. Abuse, isolation, unemployment, barriers to education all remain common place, every day events. How can this be almost 20 years after the ADA was passed? A bright new era of equality was supposed to emerge. Well, I am sick of waiting and outraged. People are suffering and today I wonder who cares? I do and lose sleep over such stories. I hope and want more company. I want others to get involved, rally around disability rights, and state abuses and isolation will not be tolerated. I just wish I knew how to get others involved and share my outrage.
12 comments:
Me too. I am an activist at heart but I don't know where to begin, how to be effective.
Well, I hope you can take some solace in the fact that I was very affected by the disability rights perspective at the conference. It was reassuring to meet people like you, and to know that my own ideas aren't as far off track as some would have me believe.
I wish there could be some sort of conference for people like you and Diane and Stephen to share your wealth of knowledge and activism with people of my generation. It's such an important history, and it seems like there are so few resources that share it. I buy my Harriet McBryde Johnson books and have read "Make Them Go Away" cover to cover, etc., but building my own library is expensive and isolated... At least there are blogs. ;-)
Emily, You made my day! It is good to know my words resonated. I am relieved to know bright and dedicated young people such as yourself are ready to take the on the effort for true equality. You are correct the history of disability is not well known and that is a shame and indictment on the educational system. Building a library takes time--be patient and selective in your purchases. Think of it as a long term investment. And yes logs are free! In disability studies and activism there are outstanding blogs available. I assume you have read the Not Dead Yet blog. Steve and Diane are great people, front line warriors.
I can't agree more. My response to your post was so long I decided make a blog post out of it instead. But in one word: YES.
Court, I suppose I am preaching the choir here. But if the metaphor is apt at least I am making some nice music. Sadly, after reading your post I agree too many don't give a damn until they too are disabled. Disability is a human rights issue plain and simple. When this is an agreed upon belief progress will have been made. Until then I will keep up the good fight and like you lose sleep over social inequities.
Lovely music indeed. I guess the question is how, where, when do we recruit non-disabled people? I'm starting a disability awareness & advocacy group on my college campus in the fall.
Obviously it will be open to the able minded and bodied, but I don't know how to draw them in and engage them. A few moths ago I learned a good number of students a professors read Holden's blog and people re talking. This is good, but I want people to be pissed off about the treatment of disabled people all in our community and around the globe. AND doing something about it!
I have a lot of people that want to get involved with my group but so far only one non-disabled student I know thinks it might be worth her time. I get told that it would be great to join a group like the one I'm forming, only if they had time. How do I compete with all the fun and easy non-controversial student orgs when students have little free time as it is?
Court, Good luck with the advocacy group. It is desperately needed as in m estimation there is deep resentment growing on college campuses directed at students with a disability. Recruiting people without a disability is not easy--but the boyfriends and girlfriend of members is a good place to start. Public events can be helpful--especially speakers and anything that can be deemed fun. Perhaps an adaptive sports person could get involved.
If people are talking and some are pissed off you are doing something very right.
Courtney, you might see if you can befriend one of the student journalists for the campus paper and get her or him to write a sizeable news article--they are often looking for material to write about. If you have some volunteers, they can distribute flyers to the students in the allied professions, pre-med majors, OT and PT and speech therapy, education majors.
Maybe some alliances with women's studies, ethnic studies, or GLBT groups if they have a larger diversity group for all of these organizations?
I'm sorry--your name may not be Courtney--my mind automatically filled in because of other Courtneys in my memory.
I too want to raise up more activists... I work on parents of kids with disabilities among others. My theory is that it's a balancing act: I think you have to balance challenging people with respecting their usual causes and activities, balance outrage with a sense that something could be done about it (something truly challenging, but not impossible...) and balancing work and action with cameraderie and fun... Some would say the balancing is too much trouble but the mix is what is engaging for people it seems.
I am able-bodied and I know that, unfortunately, most ABs do not care about anything related to a disability until they are AB-no-more. The interesting question is, why? Why do ABs not care?
They are afraid, very afraid, of becoming disabled but at the same time, not interested enough to explore the issues at hand. There are such simple things, for example, as disability insurance, that even though do not solve the core problem of discrimination would at least make life easier for a lot of people with a new disability. But most people do not have disability insurance and when I suggest they should get it, I get looks of irritation and frustration. Medical insurance, life insurance, retirement plans – yes, disability insurance – no! “I do not have a history of disability in my family” (what?!) or “I would much rather die!” (really?!). Most do not want to hear about anything that has the word "disability" in it.
To me, an important question still remains, why does society in general not care about shedding its prejudices and discrimination against people with disabilities? I wonder, if in small part, it is because most of AB do not personally know anyone with a visible disability?
I am a physiatrist and I work on a SCI unit and I know a lot of PWDs but I only have one friend with a disability. One. And all of my AB friends are fairly ignorant about disability issues, and I know they do discriminate against PWD. Numerous times, I tried to have conversations about disability, society, discrimination, the ADA, the need for more equality, I try to use the information I get from my patients and your blog (and other like-minded blogs) but, evidently, I am not eloquent enough or smart enough to get the point across. The point being - not every PWD is depressed, unhappy, suicidal, dying to walk again, that PWD can be productive members of society, husbands, wives, children, etc, etc.
I fail at trying to explain any of those points. Is it because, as an AB person, I do not carry enough weight in those conversations? I think my friends just do not believe me. How do I really know what it is like to be disabled? I do not. Maybe, if I were paralyzed, I’d be the first one to go to China to get my stem-cell treatment for the “cure.” And maybe I, myself, have an ableist (or is it disablist?) attitude? I do not know. And, who would tell me if I had???
Anyway, I love your blog and thanks for reading my ramblings... :)
Katya, It is easy and common to fear disability--it is unknown for most. Most people have no experience or knowledge of disability nor do they know a person who is disabled. Add in schools do virtually nothing to frame disability as a civil rights issue and the result is a larger number of ignorant people. Ignorance breeds fear and social isolation. So who wants to invest in people with a disability via ramps, elevators, support systems etc.? No one and worse yet it is expensive to be disabled.
As you have discovered this is a topic people don't want to talk about--why is the environment inaccessible 20 years after the law required access? This makes people feel uncomfortable so they avoid any such discussion. People will cluck about the lack of access and discrimination being wrong but do nothing. I have thought about this topic for 30+ years and remain utterly mystified at times.
I wish you well in your work. SCI units are intense places or were long ago when I was in and out of hospitals and rehab. In the beginning paralysis to borrow a line from Murderball is "a real mind fuck". Thanks for your thoughtful comment.
Post a Comment