“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.
You wrote of a growing strain on your spirit that seems to have no reasonable source, as your position is unobjectionable, your master provides you accommodations enough, and your annual fundraising goal numbers not unduly burdensome. What then?
You ask if you are perhaps “a loser.” I think not.
During my youth, my father — a fundraising titan who fought for funding alongside Major Donor — became disgusted with my inadequate Girl Scout cookie sales and sent me away to a notorious fundraising academy, one of the very strictest of the Transactional schools.
I was miserable and branded a failure — a loser — at “working the room,” and “friend-raising,” and so on, until I was confined to the barracks for insubordination after I refused to ply my trade at a memorial service, trading donations for signatures in the guest book.
But then I took a History of Fundraising in Western Civilization class. I learned about the Philanthropeon Wars.
I learned about the lost city-state of Telethonika, where disability democracy had been born around the year 504 BC. It is a loss that echoes down through millennia through some fundraisers who have the disability consciousness and who feel the shadow each year as Labor Day approaches. You may be feeling the echo of the fall of Telethonika, that flattish plain located one mountain over from Sparta.
There was a remarkable lack of public debate in San Francisco — or anywhere else — on Adult Diaper Dispensation (ADD). All costs were loudly underwritten by The Dignity Foundation, a charitable body dedicated to community development, medical research, K-12 education, and, now, small businesses hit by the “squat-by defecation” of serial defecants.
Would you like a TDF annual report? We have one for you right here. It makes no mention of our corporate sibling and sponsor, a disposable paper-goods manufacturer that is aging out of infant goods into a more mature market. Our Dignity Initiative public information campaign takes a broad-based social education approach to bring the public up to speed on what we can do — together — through top-level messaging in high-traffic spaces with framing that deploys innocuous word-play rather that blunt fear.
This top-level messaging was visible to all who cared to look out the car window at the blinking billboard near the off-ramp at Duboce. Dignity Is No Accident(s).
“Your life could be easier if you didn’t have muscular dystrophy. What I would have given for this Genetic Reparative Therapy when you were little.”
Gretchen poured water in the coffee maker. “Yeah, I’m well aware that there’s a list out there of Lives That Suck and — of course! — my name is on it.”
Alice continued. “I can’t believe you would even consider not being part of this study.”
“Well, jeez, Mom, I have to consider not doing it.” Gretchen leaned against the counter. The machine hissed and steamed. “Remember when they wanted to fix my foot and didn’t mention they’d be removing half of it? Good thing we pressed for details on that one.”
“I have to live with the results of this experiment – I will be the result of this experiment. And I gotta tell you – just because something can be done is not necessarily a good enough reason to do it.”
I realized this after Congress voted this week to deny me the pleasure of peeing like non-disabled people do, which is to say, without having to do any kind of math, scheduling, or general advance planning when going out to public places.
But by being denied the minimum, I’ve learned to want everything.
You know what would be great? If I could be envied by non-disabled people.
Yes – envy’s bad! I shouldn’t want to be envied. I should want inclusion. Justice. Equality. I should want respect, love, acceptance.
Of course I want all that. But I want more.
I want to be envied by non-disabled people. Not admired. Envied.