I will be speaking on Friday at the annual conference of the New York State Association of Community and Residential Agencies.
Here is what I plan to say:
One night many many years ago I went out and lay down in a thicket of yellow roses. The roses were in the garden of the Prado museum in Madrid. I lay among the flowers on an ordinary day, a day of overcast sun and businessmen hurrying and tall balcony windows shuttered and the streets with creeping taxi cabs.
I had gone alone to the museum because my Spanish friend could not come with me. I was too blind to see the paintings very easily. How do I explain this? Why would a person with an occluding disability undertake a solo hunt to the world of paintings? Here are some answers, offered in no particular order of importance:
• I wanted to see paintings–up close I might have an experience of Goya.
•I thought there might be some kind of tour guide who could describe things.
•I imagined that my passion for life would be equalled by the world: a utopian position that all persons with disabilities must maintain.
The more I think about it it’s answer number three that motivated me. I thought that my desire for an inclusive life would in turn open the world before me. And I still get up every day imagining this.
The Prado museum didn’t have any special accommodations for visually impaired people. So I began walking around. How simple that sentence is! I began walking.
But there were thick ropes in front of the famous canvases. And sinister guards. And I walked from one gallery to another seeing nothing of the art. I saw beautiful mud colored walls and little high intensity lights and then I found myself trailing a group of American tourists who were being led by a woman tour guide. Frankly I felt like a man who had been walking down a mountain on a dirt road. And after great solitude I’d found my people. The tour guide was explaining something about Velasquez. How he used perspective–I don’t remember any more.
What I do remember is the overt cruelty of the woman tour guide who, seeing me trailing her group, chose to confront me by saying, in effect, that I was not part of her group and I should immediately get lost.
I ran from the museum and found my way to the circle of yellow roses and I wept. I cried because I was tired; because I had a disability for which I had only the most apologetic language; cried because I had no allies–my host in Spain had no time for my disability, he was tightly wound and fighting his own battles. And this is what I’m getting at: disability is always and I mean always a problem of imagination. How will I live? How will I belong? What will I do? Who will accompany me? Who will wait on the slope and cheer me on?
To continue reading visit Steve’s other blog, Planet of the Blind…
Stephen Kuusisto is an author, poet, disability advocate, and director of Syracuse University’s Renée Crown University Honors Program. Looking for a speaker? You are encouraged to contact Steve to discuss your needs for your next event.
Planet of the Blind 