Disability and the Hot Box

Cover of Planet of the Blind....man and dog....

I was born on March 29, 1955: two weeks before the polio vaccine was announced. I had fourteen days of polio-potential though I spent them in an incubator since I was a premature infant. The heated box alone wouldn’t have spared me from the polio virus for that’s the thing about viruses–they move wherever human beings go. Still I was about as safe as a newborn could be. Meanwhile I was two months under incubation and this cost me my eyesight as back then it was believed adding oxygen to a preemie’s environment increased his or her chances of survival. What they didn’t know was developing retinas would be damaged by the procedure. I think of my box as a zero sum basal tech object–I’m alive because it existed; blind owing to its flaws.

In the disability rights community we speak of disablement as a social construct. We’re right to do this: physical difference shouldn’t be a matter of reduced expectations. We also talk about “the medical model” of disability which holds the disabled must be cured to be successful. Of course neither is true. Meanwhile I find myself thinking of that ur-box, my hot, oxygen rich see-through micro-world.

**

Premature infants often have serious breathing difficulties. In the 1950’s adding oxygen seemed just the thing. Babies were transformed from cyanotic blue to healthy pink. An article at the University of Pennsylvania’s School of Nursing describes the twists of the matter:

“During the 1950’s, as smaller and more premature babies were saved with increasingly technological treatments and the intensive care of these infants expanded across the country, several problems surfaced. Oxygen, the miracle cure for the respiratory distress associated with prematurity, did save many lives. However, its unregulated use in higher doses and for prolonged periods appeared to be detrimental to some babies. In 1942, the American Journal of Ophthalmology published an article about an apparently new condition, retrolental fibroplasia, or RLF.[26] By 1950, this disorder of the retinal vasculature became the leading cause of blindness among children in the U.S. By 1956, it became the first acknowledged complication of the treatment of prematurity.”

What can I say? The little box has haunted me during this pandemic. I’ve had pneumonia several times which is another complication of prematurity. Notice the opacity of the above passage–“several problems surfaced”; “appeared to be detrimental to some babies”; I’m not sure how to phrase it, but a primary principle of design justice tells us when we’re building things our job is “to sustain, heal, and empower our communities, as well as to seek liberation from exploitative and oppressive systems.”

As a blind preemie survivor I’ve not been sustained, empowererd or liberated from the outcomes of incubation. But you see I’m lucky to be here, and this I acknowledge.

**

When Jonas Salk’s vaccine was announced bells rang all across the United States. When oxygen was revealed to be a primary cause of infant blindness the information was held in secret for four years while the ophthalmology community fought over who was in charge of the studies. In a very real sense my blindness, occurring when it did, was the product of academic indifference tricked out as a pissing contest. As a kid I didn’t know why blindness was in my life or who had put it there or even what to think about it. Culture took care of the rest. I was genuinely deficient, a problem wherever I went. All disabled know this. It’s not my story at all.

**

“French physicians introduced the closed infant incubator in the 1880s in response to governmental mandates to decrease the overall dismal French infant mortality rate. (Politicians feared the lack of sufficient soldiers for future wars).[1] In Europe, displays of premature infants in their incubators began appearing in the late nineteenth century at national fairs and exhibitions. Dr. Martin Couney brought the shows to the United States in the late 1890s, and they continued until the 1940s.[2] The small size of the infants, their placement in a machine similar to those used on farms for poultry incubation, and the encouragement of carnival style barkers stimulated the interest of the fair-going public. [3]”

I was born fifteen years after the last premature infant carnival show. By the time of my incubation my brand of blindness was referred to as an epidemic.

It’s terrible to contemplate how tightly my blind life fits into a narrative of both exploitation and experiment. The latter reflects “how” oxygenation as the cause of incubator vision loss was confirmed–namely in a famous experiment two groups of premature infants were studied, one receiving oxygen and one going without. It was proved that the oxygen caused blindness.
I promise you there’s no headline that says: “Kids go blind to prove a point!” I also promise there’s no headline saying: “Kids denied oxygen expire to prove a point.”

**

The history of disability struggles with utilitarianism, Nazi doctors, newfangled technologies and the prospect of human experimentation “tricked out” to resemble good research. From CRSPR-Cas9 gene editing technologies to bioinformatics and health care data sets there is no area of contemporary disability research untouched by issues of bioethics. In other words, the critical questions facing the disabled today have to do with the furtherance of disability life, the protection of the elderly and poor, and a renewed commitment to protecting the vulnerable from all depredations of life. As the late Disability Studies scholar and pioneering bioethicist Adrienne Asch wrote: “Activists from Not Dead Yet and ADAPT, as well as disability scholars from philosophy, psychology, health economics, and other disciplines, need to participate regularly in the mainstream conversation; they need to help determine criteria for allocating national resources among all the many health, disability rights, environmental, and social justice problems we face. They also need to be recruited for hospital and hospice ethics committees, and they need to train physicians, nurses, and social workers in new ways of understanding life with disability.”

Yes, we need to get out of the boxes.

Author: skuusisto

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

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