Avid readers of this blog might recall some snowy pictures I posted on my way to Niagara Falls to meet with Jennifer Johannsen. Jennifer is going to launch a video project I am convinced will be an invaluable teaching tool. She interviewed me and I was very much in story teller mode. Today she wrote about how my words impacted her and I must say I am humbled. I find it difficult to assess when my words resonate with others. It seems I made a big impression. She wrote: My conversation with Bill has stayed with me in a way nothing else has in a long time. I am haunted by our talk, actually. I thought I had everything figured out--that I knew what the problems were. But after ruminating on Bill's words for a while, I do not feel inclined to pat myself in the back as I sometimes do. Instead, I feel deeply uncomfortable. For more see: http://johannesen.ca/2014/01/i-thought-i-knew-everything-already/
I do not want to haunt anyone's thoughts but I must confess I think it is good that Jennifer is uncomfortable. From my perspective as a person with a disability, I share Jennifer's discomfort. I think Jennifer's discomfort is in part related to the cultural divide between people with a disability such as myself and many others and parents of children and adults with profound disabilities. Our life experience with disability is radically different. Our respective approach to life with a disability is radically different as well. I once thought I could bridge this divide and form a powerful sociopolitical force for social change. I tried and failed. Frankly, I failed in spectacular fashion and hurt some people I liked with poorly chosen words along the way. Sadly I have come to the conclusion a coalition between people with a disability and parents caring for a loved one with a disability can never be formed. I wish this were not the case but there are simply too many points of contention. For example, when I rail against the cure industry parents of children and adults with profound disabilities take me task. They slap me down hard and say with great conviction screw you I want a cure and I want it now. When I take pride in my disabled body, when I tie disability to my identity, my words fall flat. Disability is bad! There is nothing good about disability they shout. I agree. There is nothing good about being paralyzed or being unable to be autonomous. There is nothing good about seeing a beloved child or adult with a disability suffer. The anguish this causes a parent is intolerable. I will concede these parents have cornered the market on comparative suffering. I will always concede life caring for a child who will become an adult with a disability is hard in the extreme. It is needlessly hard. This is the social failure I rail against and often feel like I do so alone.
At a fundamental level I know life with disability sucks and would prefer not to be paralyzed. Obviously no parent wants their child to have a disability. No parent wants to see their child struggle. No parent wants to see their child ostracized. No parent should ever be put in the position of having to demonstrate their child's life has value. All this is wrong, grossly wrong. This is a given. I share their shock when scholars such as Peter Singer unfavorably compares a pig to a person with a severe cognitive disability. I find the effort of a scholar like Dominic Wilkinson to tie certain thresholds or abilities to personhood repugnant.
I have never been able to bridge the gap between myself and parents who care for a child or adult with a disability. I wonder though if Jennifer's video project can do this. She is ideally suited for the task and already knows it is unpleasant work. Perhaps being uncomfortable is a good thing. Please read her post. It is thought provoking.
13 comments:
This is a great video; sadly it is not captioned & I, a person with hearing loss, missed some of the words.
You said you'd never had the support of a non-disabled person. I have. When I was again being told I could not have my service dog in the post office but could not understand the clerk yelling at me from across the room, the man in line behind me yelled back at her, "She and her dog are allowed in here." The clerk backed down. I was surprised she did and I was surprised and gladdened by the man's support.
Two thoughts: One is that you should consider vlogging in addition to blogging. The other is about your mention recently of identifying as middle-aged. I'm more than middle-aged, part of the first wave of the baby boomers, and notice that I've become appreciatively alert to the architectural movement of aging in place, as opposed to something I've always resisted for my daughter, which is to uglify her/our environment with equipment designed without any competitive aesthetics. I recently heard the writer Amy Tan describe her newly designed house as "totally accessible" so she'll be able to live there 'til she's over a hundred. This was greeted with an appreciative laugh from the audience. It's quite possible that
the expectations of an aging population for comfort and self-determination are going to change market demands, and thoughtful attention to detail will replace pro-forma compliance.
Bill, I am a parent who considers herself an able-bodied ally of the disability movement. I despise the cure industry, and I teach my daughter to be proud of herself and her disability. We are out there, though few and far between.
Burton, I have already contacted Jennifer and sled her to include captioning. Ugh, I should have thought of that before. Not to be sour, but having a guide dog or service dog enhances your humanity. Regardless, I am happy you got the support of others. Progress for sure.
A. You are not the first to suggest I blog. I have mixed feelings about this. Some people are good at this. Do not know if I am one of them. Boomers are indeed getting older and have the economic power to demand access and aesthetically pleasing access as well. I have mixed feeling about this. Regardless, I agree aging in place is healthy as is advanced consideration about physical and mental decline
Amy, You made me very happy. Have you read Jennifer's Dismantling Team Owen? Brilliant.
This comment is for B Burton: Thanks for calling out the lack of captioning... Very aware that it's missing. The overall project is yet to be launched officially - but I decided to release this one video because it was the central point of the blog post. I will need to figure out how to best caption or provide scripts, while still moving the project forward in a timely way. Thanks for the reminder!
Thanks, Bill and Jennifer. I know it's hard to remember to provide captions, but that's what real inclusion is: accommodating all disabilities. Y'all might want to check out my blog posts at http://bit.ly/siCotS
Burton, No it is not hard to remember. I have been trying to get audiogo back on my blog for while. I am aware ALL must be accommodated. Will check out the link. Thank you.
Bill I have just listened to the four interviews on you tube - I have never found anything to disagree with that you have written or said. Its exactly how it is and it resonates with how we lived. My disgust these days are those who have said to me since my husband was killed, "It must have been so hard"...or "now you can start living"...my blood boils at their assumption that we were unhappy and had no life...I would give all to be where we were together and we were more than happy if that makes sense - mainly because we were in sync (took a while)
I wish I could take exception to what you wrote. I can easily see good meaning people saying terrible things.
Jennifer here again. I have now captioned the embedded video of Bill, and will ensure all videos are captioned before releasing more.
(Apologies in advance for the closed captions over top of the captions already in the video! I will account for this when I make future videos.)
Amazing video. You are a great teacher and advocate. It's impressive how well you are able to pinpoint and clearly verbalize what you want to say and what needs to be said. Unfortunately I am usually just shocked emotionally and unable to express myself clearly. This morning the NYTimes published an article concerning an incident regarding a young man with osteogenesis imperfecta. It's a disturbing article, not just because of the difficulties this man encounters, but there is also something about the tone of the article. The young man, who went to the police station to identify someone in a lineup, has to be lifted up to see the lineup as he can't see from the height of his wheelchair. Afterward several hours, he is escorted to a subway station at 11pm during a snowstorm and eventually has to call 911 to get out of the storms. The author describes the young man, who lives on his own and has a job writing computer code, as follows: "Below his head and barrel chest are shrunken, bowed stumps for legs and tiny arms twisted after multiple fractures." WTF?http://www.nytimes.com/2014/01/18/nyregion/city-newcomer-is-let-down-by-a-stranger-then-the-police.html?ref=nyregion
Anonymous, Thank you for your very kind words. In the last week or so many people have suggested I do a video blog. I consider myself to be a good speaker. I saw the NYT article. It is sadly typical. A few months ago I wrote about an article in the NYT about Peggy Battin's husband who had a SCI. I was stunned by the language used to describe his body. The writers that pen these words are not at fault. I wonder how can such words get past an editors desk.
Well, I like your blog and my daughter has Patau Syndrome. It probably helps that I'm autistic. Disabled parents of disabled children in theory should be able to bridge that gap - but in practice, it seems not so much. Either abled parents think we're deluded or disabled parents go to the dark side ("I'm not nearly as disabled as my child/disabled differently than my child so I refuse to stand on this issue" kind of thing).
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