My question seemed to make everyone relax. That made me, at 10, the person I wanted to be: In control, competent, helpful. This was difficult for them. It was a good thing for me to recognize and care about. But it was also an ability that helped me avoid feeling much of anything about the word “degenerative.”
By the time I was ten in early 1976, my father finally found a job he seemed likely to keep and we settled into our second tiny Connecticut town. I’d been to three public schools during fifth grade and was wearing the Milwaukee back-brace 23 hours a day.
I’d started being seen in the pediatric neurology clinic at Newington Children’s Hospital, up by Hartford. (It had been formerly known by the delightful names Newington Home and Hospital for Crippled Children, as well as The Newington Home for Incurables.) Dr. Russman and Dr. Drennan, my neurologist and orthopedist, respectively, questioned my diagnosis of cerebral palsy atypical but continued the familiar routine of x-rays and exams every 3 months to monitor my always-worsening scoliosis.
After growing the tissue from two nerve and muscle biopsies taken from my upper arm and calf (an experience that included my first overnight in a hospital, my first pre-procedure Valium, and hearing the words, “Skin stretcher, please,” uttered in connection with my own personal calf), they scheduled an appointment for the verdict. I was interested in a detached way; I was comfortable with not really being one thing or the other, medically.
I don’t ordinarily post memoir pieces but I have written a lot of first-person material as writing exercises. I’m posting one such piece now to share a little bit about being a very young disabled child.
Because my memories go back to the age of three and no farther, it seems as if I came into existence as I was (just barely) walking with my mother, and occasionally my father, through the long hallways of Rochester’s Strong Memorial Hospital around 1969.
In the confusion about what was wrong with me — cerebral palsy atypical was their best guess and a misdiagnosis until I was 11 — it must have been a strange relief to the neurologists and orthopedists to come upon scoliosis, a particular problem, discrete and treatable.
“Now I must confess. I must tell you my secret. I’m not a medical doctor. I’m a doctor of philosophy. But greater even that, I am a humble man. A proud Utilitarian.
“In the great tradition of the Enlightenment – a paradoxical name if you have come to believe like I have that the light of reason is too often used like a policeman’s flashlight pointed right at your eyes – I embraced utilitarianism, or as it is known in the common parlance as, “If it feels good, do it,” or “Something that feels so right could never be wrong.”
“I believed – no, I knew – that happiness was the most important thing because it was the true foundation for goodness. A good quality of life makes you happy, and measuring the quality of a life couldn’t be easier – is there an absence of a reason to be sad?
“I loved the effort and rigor of proving that happiness was what was easy, comfortable, familiar. I felt a responsibility to help end the suffering of people who will never know happiness because their lives are inherently difficult, uncomfortable, and filled with change, all of it really bad and pretty much a downer for everyone around them.
“I realized this when I was recovering from a difficult, uncomfortable, and unfamiliar mountain-climbing accident I had had right after I divorced my second wife because she wasn’t enough of a challenge for me and I was bored. After my injuries healed and I was a real person again, I had everything, a book-lined apartment, a light teaching load, and a beautiful dog and cat.
“It was a way I had never felt before. The simplest things were filled with enjoyment. Max and Emma were everything to me. Their lives, my life with theirs, demonstrated the nature of happiness. Taking care of them, guarding their happiness, was making me a good person. It all made perfect sense.
“I began to wonder why Max and Emma were considered lesser beings than my colleagues in the department, particularly the older ones and the guy with the hearing aid. I began to resent the condescending questions about my ‘pets.’
“One day at a faculty senate meeting, I had my awakening. Max and Emma’s consciousnesses were equal to that of my human colleagues. In some cases superior. They had, after all, achieved for themselves lives we might envy in their ease and comfort. What they lacked was respect from others. What they lacked were their rights.
“I wrote a book denouncing the human monopoly on consciousness, worth, and legal standing. I worked night and day to prove that ease, comfort, and familiarity are the hallmarks of a high quality of life. When my book hit the university bookstore’s bestseller list, I had the department eating out of my hand. What did I get at home for my pains? I’ll tell you. I got a dog I found eating my cat’s shit. He’d developed quite a taste for it. And she was no better, I swear she was filling that litter box like a buffet steam table just to spite me. It’s called copraphage, and apparently it’s quite common. This was not consciousness I could champion.
“I became bitter for a time. All of my hard work, pain, and venturing into the unknown to express the central utilitarian values of comfort, ease, familiarity, that the quality of life is equivalent to the quality of consciousness, had gone for nothing.
“I received a letter around that time from the doctor who treated me after my mountain-climbing accident. In reviewing his records after a lawsuit was filed against him, he found a small tumor in my brain x-ray he had missed before. Needless to say, he was quite concerned. This could really jeopardize his chances in the pending lawsuit. Negligence, how appropriate. I returned to see him and he removed the tumor immediately.
“This episode raised two interesting points. First, the tumor was not actually connected in any way to my accident. It could have gone undetected for years until its bulging dimensions caused me to black out, go into seizures, or compose full-length operas in the time it takes to heat a Lean Cuisine. So you might surmise that this ostensibly bad bit of experience – losing my grip on Capitan and becoming quadriplegic for nearly three days – was actually to my advantage. I had thought my only luck had been when the neurologist, a bottom-half sort who thought ‘futile care policies’ were something vassals brewed up for useless serfs, showed up for one more pin-prick exam before they pulled the plug as my eye-blinks were ordering them to do. I would have fallen off the bed in shock when I felt that jab in my left thigh if I’d, you know, been able to move.
“But as Doc Missedthetumor observed, it’s a good thing these neurologists rush from patient to patient or my wishes would have respected me right into the grave.
“An even stranger occurrence followed, though. I was awake during the surgery to remove the tumor, as is the normal procedure. They were doing a sort of color commentary to keep me posted on what was happening, probably going into too much technical detail because they thought the ‘Doctor’ before my name meant I was one of them. Just after the lead surgeon announced a clean excision, I lost all interest in the nature of consciousness. I couldn’t have cared less about the rights of animals, or people, or the distinction between sensation versus perception. If you told me, ‘The end justifies the means,’ I would have said, ‘Whatever.’ I started noticing how my personal experience was horning in on my objective arguments. I was filled with a desire to read Nietzsche, which wasn’t odd except that what I wanted was to read a few pages and then fight in public places about what I’d read. One day, I thought, ‘Well, that’s just the way it is,’ and it hit me. I wasn’t a philosopher anymore. I had become merely philosophical.
“Needless to say I was useless as a teacher. After a couple of years, my department head noticed the negative student evaluations – though they thought I’d make a great undergrad and had tremendous potential if I’d only apply myself – and called me in. I came clean. Confessed I had a condition that disabled me as a philosopher. It felt so good to finally be open about it. Hobbs was kind, asked me how I was doing, told me he’d suspected something was wrong but felt it was a private matter best left unremarked.
“When I assured him I had stopped struggling and was learning to live with my limitation, his demeanor changed. He became more officious and said he needed to reflect upon the situation. We would speak soon. At first I was nervous but my now-habitual philosophical attitude was in control. I simply thought, ‘Whatever will be, will be,’ instead of grinding each word Hobbs had spoken into a fine powder in search of his first principles. Because I’d forgotten Hobbs didn’t really have any first principles.
“We never spoke again. The university sent me a letter of separation, stating that because I was unable to perform the essential tasks of my position, I was relieved of all teaching duties and publishing expectations. Because I had tenure they couldn’t dismiss me; they recognized I had a discipline-related disability that was beyond my control. I was welcome at all social events and meetings, but they could not reasonably accommodate me and my take-it-as-it-comes reactions.
“The real issue, of course, was liability. The department was small and already had few students. Parents didn’t like their kids majoring in philosophy. If word got out that I wasn’t harping on distinctions between being and Being, or my bioethics class was questioning its own preconceptions about ‘happiness’ or ‘personhood,’ rather than debating how many days a disabled infant’s parents have to decide whether to end the child’s life, those parents might start to ask why they were pouring money into a philosophy education and getting nothing more than sociology.
“Naturally, I sued the university. Naturally, I lost, it being a disability case. I was left with no career, a shit-eating dog, a crap-happy cat, and an apartment I could barely afford after the lawsuit. At first it didn’t get to me. Something will work out, I said. My book was still selling. I thought it was the most ridiculous piece of trash ever written, but I had to eat, as I put it so philosophically.
“But the lawsuit taught me something valuable: how enjoyable it was to bother someone else. Even though I lost, I had been something of a disturbance, and that pleased me. I had to make a fresh start, reinvent myself again. So I took every penny I had, hired the most cutthroat attorney I knew (a former student of mine, actually) and sued the bejesus out of Doc Missedthetumor.
“This time I won. Well, settled big. Personal injury always has an edge on individual rights. Doc Missedthetumor quit medicine and opened a one-hour photo where his film-reading skills were finally in an appropriate environment. Doc claims to be a much happier man now, after me dragging him through the mud. He told me this by saying I ruined his life. He even threatened me, a true sign of our bond. He warned me that the tumor could grow back, that it may already be pressing on another lobe and distorting my thinking in some new and possibly unsavory way. He opened my eyes to what I’ve come to call Transcendental Misanthropy. I keep his letter to me as a testimonial, in case I ever need to file a restraining order.”
[To Be Continued]
There’s No Cure for Gretchen Lowe is an unpublished coming-of-middle-age crip lit novel. Within the broader realm of literature featuring characters with disabilities — #DisLit and memoir — #CripLit presents an understanding of disability using the lens of the social model. It eschews disability as a narrative device and shortcut for conveying sentimentality, heroism, and disaster to readers.
for Belma González
When Gretchen landed in the hospital again with pneumonia in 1993 she learned she had something called sleep apnea, plus chronic respiratory failure and minor heart damage that she, only 27, could expect to heal with proper treatment. At the first Wednesday morning meeting following her return to work a few weeks later, the West-Hesperidan women’s free clinic staff apologized to her. Even with her cane, Gretchen couldn’t stand long enough for fourteen women to express remorse so everyone stayed seated instead of making a circle around her. The gist was that while they knew Gretchen had muscular dystrophy, they still hadn’t thought of her “like that.” They said they were sorry for not respecting that Gretchen had a disability and for assuming that she had been lazy and napping at her desk when she was, in fact, semi-conscious and unconscious, depending on the time of day.