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Rhythm and Blues

• October 9th, 2006

By Dave Hingsburger

I think it’s the smell I remember most. Captivity reeks. It stinks of decay, of disuse, of disenfranchisement. I left by the side door and could hear the echo as the door slammed. I left for me. I’d like to say that I left for them, but I did not. I was afraid of what would happen to my soul if I stayed even another day. Even another hour of med cupboards, time out rooms, strap downs, lock outs would have been too much. One more glance from fear filled eyes would have been my undoing. There is a hierarchy in institutions that is firmly established. There is us. There is them. There is no bridge between the divide.

I thought of that yesterday at a conference in California as I was talking to a self advocate, who was sitting with her boyfriend and talking to me of her daughter and her job. She’s a bright blond woman with an infectious laugh and a backbone of pure steel. She’s one of the ‘always free’ - the new generation of people with intellectual disabilities who grew up expecting more than captivity. She gives me reason to believe that we, the community living movement, are on the right track. Pursuing real lives for people with real potential - acknowledging both the disability and the dream. Difference and sameness.

Sometimes it’s hard to shake the memories from those first days in that institution. Of the staff who had become addicted to power, who loved being atop the heirarchy, who had keys that locked in and locked out at the same time. I remember a meeting about a young man who was a tad bit of a problem, he was unbowed, he stood defiant of our authority and asserted his own. We met with ideas to bring him down. To let him know exactly, I mean exactly, where he stood and precisely, I mean precisely, who we were. There was such an air of anger in the room. It stank.

Then, now. I’m in my wheelchair at a retreat. Hundreds of staff are gathered to celebrate the work and to challenge the future – bring it on. We are broken into groups and all have to come up with a song that reflected the work that we do and the goals of the agency. Our group decided to make a play on the song Y - M -C - A and change the lyrics so that the song would be called H - O - P - E. There was a joyousness in the air, a real pride in the work done, a sense of service, an understanding of vision. We performed our song and watched others take liberties with such classics as We Are Family and a beautiful teary Lean on Me. These people had rhythm but there were no blues.

I’m not sure what Hope House did to deserve these staff with their wild energy and their untamed spirits. I’m not sure what magic brings them together like this and holds them with a vision. The echo of the institutional hallway should never be forgotten, this is where we came from. But the door that closed on the institution is the one that opened on the community. This is the house we live in now. And if you tip your nose and take a breath that’s the scent of fresh air you smell. Freedom smells like laundry dried in the great out doors. This is what we claim. A woman in California with a real life, a group of staff in Virginia with a real vision, a guy from Canada with disturbing memories - what brings us all together is that we’ve all ‘Got Hope’. And we’re all using it.