I went out walking not long ago in the winter snow and crossed the Iowa River which bisects the campus of the University of Iowa. The day was bitterly cold and I moved fast with my guide dog Nira and I passed sullen groups of hunched students who were making their ways toward dorms or dinner. It was growing dark. I told Nira what a good girl she was. She worked through clusters of college kids waiting for the bus. Her harness made a kind of sleigh-horse jingle. We were moving almost effortlessly in the evening darkness.
I'd spent the day talking with undergraduate students about the cruel and arbitrary qualities of disability. Did they know that the word "disability" came into the English language in the 19th century? That the concept of a body that held no economic stature was a by-product of the Industrial Revolution? That in ages past the sight of a person with a physical challenge was considered to be pretty much the norm?
My students were surprised and troubled to learn that people with disabilities have been accorded second class status as a matter of social policy and that these policies cover a history of forced sterilization of people with disabilities; the so called "ugly laws" that forbade people with physical deformities from appearing on the streets in America in the 19th century and into the 20th; the eugenics movement and the influence of Anglo-American ideas about disability on the policies of the Third Reich. This is indeed troubling material to learn about.
I was mulling this over as I walked uphill in the snow. The matter of disability is nowadays a human rights concern: the United Nations has adopted disability rights under their umbrella of human rights guarantees. We live in a new century when the rights of people with disabilities are increasingly understood to be central to the furtherance of all human enterprises. No one needs to be ashamed of disability. No one should hide in a corner and suppose that his or her right to be a fully productive citizen is in any way affected by physical difference. The right to be disabled is a part of our age. I did not think I would live to see this.
Yet there I was climbing a snowy hillside at the end of a long day. I was heading to medical "rounds" in the Ophthalmology department at the university's teaching hospital. It felt as though my every step was pushed by a strange irony. I have written in my own nonfiction that when it comes to disabilities "no one has to be cured" –a way of saying that if you have a physical challenge you don't need to submit to the old-fashioned medical and social models of the 19th century and imagine you need to be cured in order to live a good life. I have fought hard for this principle. I still fight for it. I walked in the snow and considered the astonishing events that are occurring in this time and in our lives. I am a part of these events. I am a blind civil rights advocate who is working with physicians and genetic researchers who are very close to curing inherited forms of blindness. The snow was coming down hard. I was moving through a vast warren of medical research buildings on a Big Ten campus after dark. My shoes made a squeaking noise in the fresh snow.
If the cure for inherited blindnesses can be achieved then a scourge of blindness can be avoided in our era. The story is as big as the fight to cure polio in the 1940's and 50's and very few people know about what's happening in the world of contemporary blindness research.
My own form of blindness probably can't be fixed. But conditions like macular degeneration or Stargardts disease or Leber's congenital amaurosis will most certainly be cured and some of the best work in these areas is occurring at the University of Iowa. I feel shoots of joy in the evening snow. I want to defend those who cannot be given their sight and I want to tell the story of the researchers and physicians who are working "full bore" to fight genetically caused blindnesses.
As I walked in the cold I felt the rare privilege of being "of a place and time"–a heightened experience of wonder and intellectual curiosity that's mingled with hope for our human condition. This is a compound experience like reading a poem in Chinese. I thought about what it would be like to put two Chinese ideograms together: one for dignity and the other for new hopes.
S.K.
Planet of the Blind 
Steve–I love this post. So many people (I would venture mostly Americans) have a really hard time not living in absolutes. We love our dichotomous thinking that makes it hard to work for cures, but also understand that we shouldn’t ‘have’ to be cured in order to be whole. But you say it here perfectly, in the snow, with Nira and researchers waiting for you. So lovely!
LikeLike