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.
16 comments:
Consider moving to Berkeley. No snow, but a very different vibe.
Ah, Criptopia. Berkeley unaffordable. Good vibe but not what I am after.
Ah, Criptopia. Berkeley unaffordable. Good vibe but not what I am after.
We should make a cripple commune.
Kathy, Commune sounds to 1960s. A collective,the word, has better connotations.
Bill,
Your comments echo some of my colleagues, friends and relatives who are single. Cooperative living might be something to consider. My brother-in-law moved in with us last summer while dealing with an illness. He is feeling better and is still living with us. The companionship is what is helping him stay healthy.
Bill, finding your blog literally saved my life and sanity a few years ago, because you were the first "my people" I'd been able to find in my isolated life. I had had contact with plenty of sick and disabled people and familys but their ableism disturbed,distressed and then drove me away leaving me feeling as if I was some aberration for having delusions of personhood with a broken body. Since then, partly through learning the common words/themes to google to find other like minds, I've found many (although I remain an isolated spectator looking through the windows at people who have no idea I'm there) and so so many of us have the same utopia cravings that you do. Most of us lack the personal energy and resources to do any more than dream though. When surviving the world as it is takes so much out of us its hard to find the extra to make it different.
My home, like yours, has become bipedal/functionally well unfriendly as I've adapted it for my needs. The bipeds get cross at their head injurys from my low doorways (their own fault for not being aware of their space and ducking), and the not-chronically-sick get frustrated at my timetable being different than theres, or at having to forgo spraying themselves with chemicals when theyre around me. In a million ways the "ableist well" resist adaptation, insight and growth, so the gulf between them and me/us gets wider and wider. After just six years I no longer have the energy to fight them/society or often even to engage. Its a lonely place to be and without blogs like yours it would feel too hopeless to keep living knowing theres no way to change this widespread miserably disabling attitude.
Its bittersweet reading your thoughts as a man whos been living crippled much longer than me. It would be comforting to read that things are improving, that you see progress and hope. But youre probably saving me, and others, years of grief by telling us the truth, because if this social picture is too complete to change then painting new pictures has to be the way forward. And with the mood of many oppressed people in the world its possibly the right time for new approaches to succeed? If any of us can muster the energy to start painting..
God bless you. Your blog makes me appreciate what I have. I really hope that things work out for you and I wish you a comfortable future.
H.Smith, Thank you for your very generous and kind words. Bad Cripple is a labor of love and your comment reminds me so many others like me exist in the world. Our people, my people, your people, all of us must stick together. My wish is some day we will all come together. When that happens watch out bipeds!
http://themighty.com/2016/02/opinions-fly-over-housing-community-for-people-with-disabilities/?utm_source=Facebook&utm_medium=Mighty_Page&utm_campaign=DISABILITY
I wasn't alive in the 60s my friend, but apparently someone had this idea before either of us.
Kathy, The link to the mighty is of no interest. Since the controversy erupted about disability rights, they have doubled down and are now solidly Inspiration porn and nothing else. Scholars have been writing about utopias since the turn if the century hence my reference to Thorstein Veblen. The aging hippies from the 1960s are now largely conservatives with no interest in utopias.
My purpose to posting the link to the mighty article is that these parents tried to create a community of disabled people for their daughter to live in, and disabled people (or their families) are saying it's institutionalization.
So we want to separate ourselves from the ableism culture. But I know for myself, I need help. So I'm torn on that community in the link... Is it an institution, or is it a safe community for cripples? Is it because some of the residents are mentally challenged that theyre accusing it of being an institution? Or because there are aides?
Maybe it's because able bodied people made it?
I don't live that far from you. We should meet some time.
The autistic community is I think rightfully concerned about a separate community created for the developmentally disabled, especially ones thought up by parents. As an autistic adult I have had run ins with " autism" parents. Would someplace created by them have the freedom an adult developmentally disabled person need/desire? It looks religious is it the one I am thinking of? Would there be freedom of /from religion? Also this place( I think this one) has been discussed a bit by the adult autistic community. Some things look so pretty but are not really.My kids are also autistic I would hate to see them trapped somewhere without freedom, to eat when they want and make normal life decisions based on their desires What is needed is spaces for disabled people created by or at least with a lot of input of the people they are for.(it would be awful to be forced to social activities you don't want for enrichment) Eldest and I have support persons for helping like with executive function stuff planning and paperwork (my husband used to do all of that in the past he was the interface with the non autistic world, but not anymore because we are divorcing).
My friends and I often talk about how nice it would be to have space where we all live close and it is suited to us, the community part would be nice, but also I feel a need to be in the regular world (with less head patting and being talked to in the "nice" voice). there is also the needs that are different for different disabilities, or even among autistics, sensory things and stuff. Or just like once I was visiting someone at the hospital and the fire alarm went off and it had loud noise, but also strobes and I had a seizure, deaf people would be helped by the strobes , but not so much me, eldest will run and hide from loud noises, so it's complex. It can get lonely though to ford through the annoying ness that are non disabled persons, really tedious. I would love a utopia, but somehow with the way people are flawed and even among the disabled there are different groups that treat each other badly so I dream and try to do what I can to get things better but I'm always not so confident it will.
I'm sorry if this may have veered off topic but I couldn't tell for sure that you meant all people who are disabled should have a community or they should group by disability
Obscure Fox, People in the Autistic community have every reason to be wary of a separate community. As I am sure you know the history associated with such communities is shocking. Atrocities abound and Willowbrook Institution comes to mind. I deeply appreciate you pointing out what my suggestion means to people who are neurologically diverse or have significant cognitive deficits. What we really need is a cultural revolution but I am afraid I am not going to witness such an event and hence I yearn for a community of others like me. I have no place to rest and like you wish I had a space where I could let my guard down. So sadly I agree no utopias currently exist or likely to exist in the future given how flawed we humans tend to be.
Kathy, I think I was a bit quick on the trigger responding to the link at the Mighty. Sorry for that. Like you, sometimes I need help. I also need company and social interaction despite my hermit tendencies. As you live relatively near by in Central New York, I was envisioning creating a link between communities and the many CSA ( Community Supported Agriculture) farms that abound in Madison County. Space in this instance abounds. If connected with the community, food supply, and 24/7 life on a farm support systems could be developed. My ideas are still swimming around my brain and it is hard to articulate what I have in mind. We could meet if you wish. It is not as thought people with a disability abound in the area we live. Send me an email and perhaps we can figure a safe public place to meet.
I will do.
At this point in my life, I am homeschooling two teenagers. Right now I have two built in assistants. Also their father still assists me. However, I can't drive (rarely I can, if I don't have to go far), can't maintain my home, provide groceries, can't even carry my own laundry.
I am five years out from my spinal cord injury, and I am 38 years old.
So at this point I am going with the plan of moving to assisted living once my kids are launched. Not that the idea of being institutionalized for...what, 40-50 years?...is very apealling. But there aren't a lot of choices.
I do like the idea of a cripple commune/community/whatev we call it. I am way more comfortable with that idea than any other. I don't know any other cripples IRL.
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