Chantal Sicile-Kira

The Autism Advocate

Your Presence Is Making Us Uncomfortable

A family fights to release their relative from an institution.

Posted May 11, 2011

In honor of Mental Health Month (as is May) I am posting an essay by my friend and disability advocate, Diana Pastora Carson. This is her story, and the story of her brother, Joaquin, and their battle for his release form an institution so that he may live near his family. Coincidently, I worked at that same institution years ago, preparing the first group of individuals that would live in group homes in the community. Now I am preparing my own 22 year old, Jeremy, for life as an adult. I hope I never have to go through what Diana and her brother are going through. There are no words, except Diana's, that can do Joaquin's  story justice.

Your Presence is Making Us Uncomfortable: A Broken System Doesn't Get It

By Diana Pastora Carson

The bureaucrats were well aware of who I was and why I was waiting outside of their staff meeting, my power boots pacing between the two doors of their conference room. Their floor-to-ceiling, wall-to-wall windows gave them full view as I smiled and said good morning to passersby for the two hours that I waited for their boss to come out and talk with me. This administrator had refused to return my calls personally and instead had her subordinate call me on two occasions, unable to answer my questions about why my brother was still living in an institution when nearly two months ago, after three years of our family advocating on his behalf, they agreed that he is ready to return to the community. At that time, our family was told that it would take one to two weeks to have his plan approved by administration. After seven years in an institution, the result of medication side effects, Joaquin would finally be returning to his own community, where friends and family await him.

But two months after coming to this agreement, now, once again, their promises had not been kept. I wanted answers. I had been calling to get answers for nearly a month. And still I had none. I was committed to my brother's freedom and life quality. So I took a day off from work to get the answers in person. After two hours of patiently and respectfully waiting outside their meeting room, the executive assistant came out to tell me that my presence was "making staff uncomfortable."

I wondered what she thought I should have done differently so that they could be comfortable with my presence? Had it been my responsibility to make them comfortable, maybe I could have brought them all Starbucks? Or maybe I should have dressed down for the occasion? Not look so put together, respectable, and capable?

What was it about a tax-paying citizen wanting to rescue her brother from life in an institution that made them uncomfortable? What was it about a client's family member advocating for him that had them on edge? After all, this agency, the San Diego Regional Center, was designed out of a landmark legislative act, the Lanterman Act, to provide community support to people with developmental disabilities in California. Their website states, "It is the philosophy of this regional center that each consumer shall be provided with the maximum opportunity to participate in everyday living experiences that promote development to the highest potential and full participation in the community."

And what had they done towards providing Joaquin with the "maximum opportunity to participate in everyday living experiences that promote development to the highest potential and full participation in the community?" For several years, our family has consistently jumped through every hoop presented to us by the regional center in the hopes that it would be the last hoop, and then Joaquin would come home. And we have experienced resistance, distractions, and a roller coaster of promises and disappointments. Logic would lead me to believe that their philosophy aligns with my behavior, but it does not align with their behavior. Internal conflict can be quite uncomfortable, so I've heard.

So how should I have responded to her assertion that I was making staff uncomfortable?

This was one of those occasions when you think of the perfect response after the situation has past. I should have told her that my brother was uncomfortable last week when he was wearing size 8 shoes on his size 11 feet. I should have told her that he was uncomfortable when one of the men on his unit bit him on his leg yesterday. I should have told her that Joaquin's living room is loud, lit by fluorescents, furnished with vinyl, smells of urine, and is home to about 25 other men. I should have told her that Joaquin eats institution food every day, has limited opportunities to go for walks and see the sunshine, and experiences severe constipation. I should have told her that Joaquin, a 41 year old man, cries in desperation to "go home," and has been doing so for the past 3 years. I should have invited her to make the 2 hour, one-way drive with me and my parents every weekend to visit Joaquin, to hug Joaquin, to bring him comfort.

To see video of Joaquin, go here.