Farewell Scott Rains

We have lost a great disability rights advocate here in the United States. But I’m not sure that’s a proper way to say it. Scott Rains was more than a guy who rolled for equal access, he was a force for delight. The clouds moved with wind across his smile and he smiled across the world. He encouraged the disabled to travel and he was always joyous. I don’t know enough about joy. I’ll bet you don’t either. But I know Scott Rains knew something about it and shared.

I never got to meet him in person. We corresponded and talked a few times via the old fashioned telephone. He was always looking for ways to get people who roll or crutch or dog it, who puff with a tube or talk with their hands to put their toes in the ocean. I told him how once I was lifted by three men while vacationing in Jamaica. They grabbed me and hoisted me into the air. All of them were well meaning: their goal was to place me securely in a boat. The blind man needs help. We’ll give it to him. I smiled. “Its a cultural thing,” I told myself. Their intentions were good.

The trouble is that lots of well meaning actions by non-disabled people are simultaneously demeaning. Those helpful beach guys saw my blindness as something akin to what I’ve come to call “trouble luggage” which is the ultimate pejorative objectification of disability. My friends who travel with wheelchairs know all about this, especially when they’re flying. The airlines view disability (all disability) as trouble luggage. Its rare for a disabled person to have a good day when traveling. You can joke if you like by saying its rare for anyone to have a good day when traveling but trust me, the demeaning and objectifying experiences of disabled passengers are so consistent and so humiliating they far outstrip the lukewarm unhappiness of non-disabled travelers.

Enter Scott Rains who said there’s a beach out there and your toes need to touch the fizzy place where the water meets it.

I will miss him very much and I know I’m speaking for thousands.

Author: skuusisto

Poet, Essayist, Blogger, Journalist, Memoirist, Disability Rights Advocate, Public Speaker, Professor, Syracuse University

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