Project 3000

My mornings are usually hectic just as yours must be. Coffee? Stain on your shirt? Hurry. Oh hurry please.

Not too long ago I had the good fortune to talk with "Insight Radio" in Scotland. This is a radio channel that offers programming about blindness and low vision to listeners in the UK.

I found myself sipping coffee in the early Iowa dawn and talking about denial. Lots of people who have disabilities struggle to admit their physical differences and that's an old story.

I said that the way to beat denial is to admit that you desire a larger life.

I learned to be a cane traveler and a guide dog traveler precisely because I wanted to see what might lie beyond the next hill.

Lots of blind folks will tell you the same story.

It was a good interview.

Lo! And then I opened my e-mail and discovered this story about "Project 3000"--a research initiative that's underway here at the University of Iowa under the direction of my friend and colleague, Dr. Edwin Stone.

You can visit the story in this issue of USA TODAY, and as a supporter of Project 3000, I wish you would.*  

There are a thousand ironies concerning disability. For instance: one may well decide to live without thinking about being "cured". This is an important position because one can get stuck on a medical model merry-go-round of doctor visits and  depressive subjectivity.

In my first memoir "Planet of the Blind" I wrote that "On the planet of the blind one doesn’t have to be cured".

I still believe this. I will most likely be a blind person all my life. I'm starting to become adept at it. I imagine that when I'm very old I will get it completely right. Maybe I'll get it completely right tomorrow. Or this afternoon.

But what if a new generation of doctors and researchers is coming of age? What if they don't believe that blind people are "defective"? What if the prospect of finding cures for genetically caused forms of blindness is ironically a means to bring people back into the community--people who have been forgotten because long ago their eye doctors in Muncie or Schenectady told them that there's nothing we can do for you so why don't you just go away and be blind someplace else?

I can't tell you how many of my blind friends and acquaintances have told me that story. The old fashioned eye doctor couldn't deal with blindness. He had no blind friends. He saw vision loss as a personal reflection of failure.

Today there are physicians and researchers who understand the dynamics of the "old fashioned" "medical model" of disability.

In effect, this new era of medicine is being developed by physicians who believe that finding cures for inherited disabilities can be championed while arguing against the old fashioned paternalism of medicine and the "defective people industry".

Dr. Stone and his team at the Carver Center for Macular Degeneration are not only world class researchers--they also understand that the "medical model" of disability (which treats each person as a defective patient and then forgets them when they can't be "cured") is in fact an obstacle to visionary science. In other words, blind people need to be involved with the research as full partners. There are literally thousands of blind people in the U.S. who were told decades ago that there was no cure for their condition and they should just go away.

That's a terrible model. Blind people need lifetime eye care just like the rest of society. And if there are blind people living "out there" in this vast country who have a form of blindness that can be ultimately improved through the emergent medicine of gene therapy it might be nice for them to know about it.

Ed Stone's team champions blindness as a part of the collective in which we all live. I have watched his team discuss how to "see the full person" and not the blindness. And unlike lots of eye doctors the folks here at Iowa are very hip to assistive technology and useful information for people like me who can't be cured or for whom "being cured" is no longer spiritually or psychologically necessary.

I'm proud to know these excellent researchers.         

*(Speaking of support, you too can support Project 3000 by purchasing this red "rubber band" bracelet.  On one side is says "Project 3000".  On the other side it says "Believe in the Unseen".)

SK

Comments

[Dottie]

Hi Steve,
Not certain how I did this message thing BUT
Now I get a chance to thank you for the autographed book eavesdropping that you sent me home with. I am reading it slowly in between moments of busyness & sometimes instead of playing a stupid solitare game on computer,i will open your book & read a page. Stay well!
Dottie from Denver