RheumaBlog

Same dragon, different day.

Steven Kuusisto and CorkyOne of the blogs I’ve come to deeply respect is Planet of the Blind, written by Stephen Kuusisto, who has been “blind” since he was born prematurely in the mid-1950s.

I put the word blind into quotes because Kuusisto does have some vision. It’s just enough to allow him to see colors and shapes, “a kalaidoscope” in his words; and after a recent breakthrough surgery, he can now see more of the world than he’s ever been able to before, though he is still “legally” blind.

But Kuusisto’s vision transends the physical. His figurative vision is as sharp, clear and breathtakingly beautiful as a bell.

Kuusisto’s disability is a result of too much oxygen pumped into his hospital incubator. At the time doctors thought they were doing the right thing for tiny babies born weeks before the end of the third trimester by enriching the air they breathed. But for Kuusisto and many thousands of other children, the additional oxygen sometimes caused blindness.

His story strikes a singular chord in my heart. I was also born many weeks prematurely, and only the year after he was. But the use of extra oxygen had recently been stopped as a routine practice because doctors had finally discovered the damage it could potentially do to a premature infant’s delicate and developing eyes.

Kuusisto is a scholar, a poet, a writer, and a professor of creative writing and disability studies at the University of Iowa. His imagination and insight, the incredible images he creates with words and his deep honesty and real passion for the rights of the disabled are both eye-opening and inspiring. He “sees” the world in ways most of us never have — and perhaps never will. He’s an activist and advocate, and I’m glad he’s here to give all of us a voice and a map toward positive change.

Here’s one of Stephen Kuusisto’s poems, taken from his book of poetry, Only Bread, Only Light:

Terra Incognita

When I walked in the yard
Before sunrise,
I made my way among patches of dew —
Those constellations on the darkened grass.

The webs drifted like anemones,
And I thought of lifting them
As if they were skeins of brilliant yarn
That I could give to my  mother
Who’d keep them
Until we knew what to make.

I pictured a shirt —
How I’d pull it over my head
And vanish in the sudden light.

Whoa. So much for disability, eh? I’m inspired and challenged by his talent, his art, his tireless work on behalf of others, and his joy. You can visit Kuusisto’s blog by clicking on “Planet of the Blind” in the blogroll to the right, or by clicking right here.

One thought on “Disability: Mind over matter

  1. Connie says:

    Hi Wren! So glad you shared this news about your new blog with us. Yes, certainly we’ll make the appropriate changes to our blog roll. And thank you so very much for these kind words about Steve and his work…

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