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.
