I don’t know what the feminist reaction to this post will be, but it won’t get out of my head, so I had to write it out. I’m interested to hear.
I’m not a big personal fan of Andrea Dworkin’s writing, but I appreciate her contributions to feminism and her work as a radical thinker. When she died in April, 2005, I read a couple dozen obituaries and blog posts that celebrated her life and learned more about who she was as a woman and activist. The Guardian released “Through the Pain Barrier,” reportedly her last piece of writing, completed just a month before her death. I was excited to hear that the topic was her experience with disability, and I couldn’t wait to see what the woman whose writing and speaking style had been described as “apocalyptic” might say about disability and civil rights.
I was disappointed.
Her account of her osteoarthritis, double-knee replacement and the years of troubled rehabilitation and pain afterward is deeply personal, as is typical of many Dworkin essays. She begins by blaming her osteoarthritis on a 1999 rape in a Paris hotel.
Doctors tell me that there is no medical truth to my notion that the rape caused this sickness or what happened after it. I believe I am right: it was the rape. They don’t know because they have never looked.
I do believe horrific experiences and emotional pain can contribute significantly to a person’s health, but I wince at the general notion that a common condition needs to be attributed to personal crises. Impairments happen. God doesn’t cause them and they exist without need for any form of moral explanation, whether it blames the person or makes them a victim of someone else’s moral flaws. Needless to say, I’m uncomfortable with the way Dworkin begins.
Dworkin’s treatment for her worsening knees follows what I understand to be a typical pattern of drugs, cortisone shots and finally knee replacement surgery. I don’t envy her or the senior citizens I know who’ve had this treatment or are in the midst of it. Despite various setbacks, the people I know personally who have been through this recovered their mobility after the surgeries, though they did experience the basics of what Dworkin describes rather dramatically here:
I still don’t know what he did to me but I came to the conclusion that the operation was barbaric, involving as it did the sawing out of the arthritis, which meant sawing through bones. It was like being kneecapped, twice, or having one’s knees and bones hammered and broken into bits. After the operation I was in a nightmare of narcotics and untouchable pain. There were morphine shots. I asked for them and got them often. Even morphine shots in the upper arm hurt.
I had a hallucination but it is still real as rain to me. I was in Virginia Woolf’s house and I was happy. But “they” wanted me to go down the stairs. I can’t, I begged, I can’t. My hospital bed was at the top of the stairs and I was afraid that they were going to push me down. I saw the steep decline of the steps. I couldn’t get over my visceral fear of falling or being pushed or being turned over from the bed down the flight of steps. I kept experiencing my bed as being on the edge of a precipice.
I agree that the operation seems “barbaric” and thinking about it gives me the willies, but I dislike how Dworkin makes these personal experiences of a common procedure out to be extraordinary. All serious surgeries cause pain, and heavy-duty painkillers do cause hallucinations. I violently beat up a sock puppet in one fentanyl-induced hallucination last November for reasons I can’t explain. After back surgery at age 16, I imagined my hospital bed was in a basement hallway and I’d been abandoned there. It took repeated reassurances from nurses and my hospital roommate to convince me I was safe and stop me from hollering for help. My grandmother saw spiders all over the walls once. These hallucinations are normal, though as individual as dreams, and are not proof of anyone’s suffering or victimization.
I relate well to Dworkin’s descriptions of physical and occupational rehabilitation, including the weird and often purposeless tasks required in OT:
Rehabilitation also includes so-called occupational therapy: throw a ball around in a circle; put round pegs in round holes; stand up, arms on a table, and read a page of a magazine; water a plant; play checkers or cards; and the pièce de résistance, cook and serve a simple meal.
And the sexism she notes of caregiver expectations upon returning home I saw, as well:
On discharge, social services are provided. My male partner is not expected to be a care-giver.
I have no experience of the “pain management centres” she describes, but they do sound tedious. I’m simply stunned by the potent mix of painkillers she says they kept her on.
Curly eventually puts me on Percocet, fentanyl patches and methadone. I am on these drugs for nearly two years. I become slightly indifferent to the awful pain. My speech slurs and my memory is impaired.
Fentanyl is dangerous for any length of time, I was told. The patches Dworkin used prompted an FDA advisory in 2005. I was weaned from fentanyl injections after a few weeks in ICU and I missed it terribly at first. You may recall fentanyl was the painkiller mixed with heroin or cocaine that was responsible for dozens of deaths this past spring.
Dworkin’s three-story New York residence disturbs me greatly. Not that she didn’t move somewhere more accessible — I know how difficult that can be. But did she really spend years crawling up and down three floors of steps between kitchen, bathroom and shower? I find that intolerable, and either unbelievable or lacking in creativity or… something. Adapt, Andrea. Adapt! Bathe in the kitchen or pee in the shower or something. Spare yourself some pain. If there are any triumphs of adaptation Dworkin does discover for herself, she never mentions them.
I remain ambivalent about the descriptions of her leg braces and the humor and pathos there. It doesn’t seem as though she accepts her body for what it is, and I had hoped for more from the woman who made no accommodations to expectations of feminine beauty or style. Depression rules her state of mind:
I can’t bear it or accept it. I reject the extent of my disability. I find myself in a silent rage that stretches over weeks. I am utterly exhausted by my incapacity. I am worn out from walking. I am sick of physical therapy.
She lacks perspective on what a “little humiliation” is too:
I keynote a conference on the Holocaust. The organiser picks me up. She is driving a truck. I try to climb up into it. She physically pushes me under my ass without permission, all the while talking to me in baby talk, put your tooshie there, keep your cute little fanny there. I turn to her and say, I am disabled, not stupid. A friend throws a party for me in Washington. I ask how many steps there are to the apartment. He doesn’t know. I assume he will get back to me. John and I go to the party. There are three flights of steps. I can’t get to the party being given for me. We could have given it in another venue, the friend says the next day. It cuts. I go to a bar and need to use the rest room. The men’s is filthy, the bartender says; the women’s is two flights up. I use the dirty one. I go to a new movie theatre that has elevators and disability bathrooms but the polished stone of the floor is so slick that my crutches cannot safely navigate it. I am walking with a friend who suddenly looks at my crutches and says, you don’t want to be this way the rest of your life, do you? Her repulsion is barely masked. I feel unutterably alone.
While some of these encounters are minor, the party in her honor that she could not even attend seems a big frustration and failure of her friends to me. Three flights of steps overlooked when the guest of honor used leg braces and crutches — it seems unconscionable.
The last several paragraphs hold promise as she turns to public access and the ADA, though most of my disappointment lies here. She acknowledges that:
Only a determined policy of public access can help to mitigate the loneliness. One needs to be able to enter buildings; have a cup of coffee; go to a restaurant, the theatre, cinema or a concert; attend school; go to lectures or readings; use public transport, bathrooms, hotel showers; go to museums and sporting events and political rallies. One needs equal opportunity in employment. One needs to be integrated into the world, not separated from it; yet one has special needs, ones that able-bodied people rarely consider. The low consciousness of the able-bodied increases alienation.
She praises the accessibility the law has provided for her in public places, and gives credit for this to juries awarding high punitive damages to plaintiffs, which is not untrue but significantly misrepresents the successes and history of the ADA in the courts. There is no indication at all that more needs to be done or that the law is perpetually under fire in the media and from Republicans in Congress.
So that wraps up my ungenerous critique. Admittedly, I’m generally uncomfortable with Dworkin’s emotive writing style. And I’m uncomfortable with any telling of the crip experience that has even a whiff of the “why me?” stereotype of disability as drama. I’ve seen too many disease-of-the-week, inspired-by-a-true-story, whine-until-some-nondisabled-person-snaps-you-out-of-it sagas on TV and film to be comfortable with any reinforcement of that tale.
And the last time anyone really famous was given big media attention for their disability, it was Chris Reeve on Barbara Walters talking about how he had wished himself dead and how his purpose in life was now to find a cure for paralysis. When he died a decade after his paralyzing injury it was widely reported that the cause was sepsis from bedsores and that such problems were an understandable killer of any quad. In truth, Reeve died from a violent reaction to a medication, and while he had been dogged by infections he was sitting in his wheelchair at a hockey game earlier on the day of his death, something no person with a dangerous sore on his butt would ever do.
It took Reeve the better part of a decade as a disabled person to start speaking about the basic civil rights we all deserve, though he spoke publically about other issues all the time. My expectation that Dworkin would stir the pot for disability rights was unrealistic and bound to disappoint. Disability isn’t an identity anyone embraces overnight, and some obviously impaired people never accept it.
And beyond that, becoming politicized about the social treatment of disabled people also doesn’t come easily. For most, there’s no discussion around the dinner table about the day’s humiliations with others who’ve experienced the same. The disability rights movement was largely started in the U.S. by a generation of people who caught the polio virus and were institutionalized together and perceived the injustice of their collective treatment because of this. Most crips don’t experience this kind of community unless they seek it out. Not Reeve, not Dworkin, not me.
Dworkin had nothing remotely “apocalyptic” to say about disability. If she’d lived another 20 years that may or may not have changed. Her last piece of writing is not at all political despite its mention of the ADA — because her mention of the ADA was completely uncritical. It’s just a personal piece, quintessentially Dworkin, really. And the sad truth is that any newly disabled person (or newly accepting of the identity) is not ever speaking politically about disability rights unless they say they are, celebrity or not.
Crossposted at The Gimp Parade