Only Anecdotal

No numbers, just stories

French Literature

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When asked about my background, I can note the fellowship in disability policy, or the work toward my master’s in public administration, the grant writing, and the years of personal and professional experience in working with the bureaucracy that surrounds special education and health care. Or I can mention that my intended profession was to write, and to study, teach, and research literature. Yes, I did that, and at times it seems like a lifetime away. I finished my master’s in French literature and then moved to comparative literature for my doctorate. I wrote, and was moving up in the literary world, and things were going quite well until… Well, this is the story of so many people who either become sick or disabled themselves, or have family members who do. Truth be told, it is a lifetime away. In my case, it was my child who needed me more than any scholarly attempts at deciphering Borges, so whether I knew it or not, my course was set from that time on. Juggling only works for a while when the situation is serious, when appointments and anxiety set a whole new trajectory for our lives.

In my case, we were lucky in the early days, with enough financial resources to support my not working, the medical costs, the transportation costs, the human costs of fighting to get what my child needed. But things could only continue this way for a while. Add a child, or two, or three, add a diagnosis, and a divorce, and the financial consequences of the time spent fighting rather than working, I know the challenges, the loss of dignity waiting in a welfare line (even if they no longer call it that). I know what it feels like to be so close to the edge. And I also know that I am incredibly lucky not to have fallen off.

The last week seemed an exercise in remembering the lessons I learned myself, as I met with family after family on the brink. One man told me that he had been crying himself to sleep in the hospital every night. His own disability had been difficult, but when his wife was hurt and unable to work, the challenges grew: the battles with her employer, the application to Social Security, the continued expenses–previously sustainable… And a way of life that the family had worked hard to achieve was quickly disappearing.

This was only one family, in the beginning stages of such devastation, but I see them all the time. I wanted to tell the man that he is not alone, but I am not sure that the news of so many people being swallowed by financial ruin in the face of disability is a reassurance. I think of Victor Hugo, Jean Valjean appearing in my referrals not occasionally, but often. I have met people who confess to me that they have stolen food, or money to buy medication for a child. Some have gone to jail for it, and find themselves living in hotel rooms, seeking endlessly for help. But a simple background check usually makes both housing and employment nearly impossible to find. When I see situations like this, day after day after bleeding day, I can only respond to the question about my relevant education to say that French literature was entirely appropriate to prepare for this.

Truth is, I wish I had answers for the families I see. Sometimes I can find some resource that helps people, or can fight a little harder, know the person to call. And most of the time, the strength of human spirit amazes me. I can continue to build a community and to learn, but most of all, it is the human element in all of us, the stories, that have the most chance of affecting policy and change. I hope so.

Written by Only Anecdotal

16 Jul 2012 at 7:18am

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