This is an excerpt from an essay in Sex Icon Magazine titled 'A babe is not a boyfriend'. I was in Toledo, Spain at the time, thinking about the hot guy I was in constant and close proximity with and the people who had just been murdered. I share this excerpt to honor the victims in memory, still without their names.
While I was on this trip I was also processing the then-recent killings in Sagamihara, Japan. A man stabbed 19 people to death because, as he wrote to a government official before the killings:
I envision a world where a person with multiple disabilities can be euthanized, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities...the disabled can only create misery.
To share my anger and fear and sadness I friended and followed a bunch of activists I found through their writing. Which opened up a floodgate of news about the murdering, oppressing, segregating and discriminating of disabled people happening constantly around me. I was no longer blissfully unaware, in the personal world of fashion and adventure I had created where I could ignore that primal, gut feeling that I was aggressively not wanted.
Now I was part of a community of people at risk in a way I had never felt before, and I had a responsibility to them. If people connected with me, gave me attention for my sex appeal. I could use that. I had crafted a bubble to get me through rejection, unwantedness, not-belonging and danger. Now I needed to let in other disabled people experiencing those same things. Sometimes to death.
I am already visibly disabled. But I refer to it in code. See me, the artist, the person, the #sexicon at least as much as you’re inclined to see the chair. A purposeful narrative to seduce people’s attention from the thing they’re conditioned to focus on. Instead, I would let myself be publically disabled. Drop the act. Use the same talents for something besides misdirection.
A Canadian public service organization, #projectvalue, invited people with disabilities to make videos, starting with them detailing the contents of their medical records and their dire prognoses. #projectvalue’s motivation came from the introduction of doctor-assisted suicide laws in Canada--because despite all our successes and contributions, disability is still widely considered a fate worse than death. One that makes suicide seem like a totally reasonable option. When it’s also a legal option, my concern is that a sizeable portion of society would feel the problem has been taken care of. Other needs a person with a disability has would not be funded or supported; suicide interventions not employed. Why shoulder the expense when they--when I--could just take the noble way out?
The format for a #projectvalue video was the blurred face of the person talking as their limits scrolled across the screen. Then the screen cleared and they introduced themselves and went on to refute the doom that had been pronounced over them. I set up my iPhone in my sunny living room, crystal-spun rainbows floating around the room. It took me 40 takes to get through my first line. “I have sacral agenesis.”
I felt like I was handing people a weapon to use against me. Not entirely rational. But after a lifetime of coyly brushing off the ‘what happened to you?’ question from strangers wanting a diagnosis to satisfy their curiosity, it was the most unnatural introduction I could imagine. But I kept going. And it turned out OK. I described how I flipped the script from "You should be careful to manage your expectations of your future because you will never have a full life” to “Bow down in envy, world, I am your #sexicon.” The final video got more than 12k views and is still being shared.
The news stories kept rolling in. Mothers murdering their children and getting light or no sentences because of the very totally real ‘compassionate defense.’ Caring for a disabled child is so overwhelming, they were probably in a lot of pain anyway, and everyone goes, “We totally get it” and legally backs up that sentiment by letting Mom off the hook. But nothing gutted me as much as the Global media referring to the Japanese hate crime as a “mercy killing.”
A man broke into a care facility for people with multiple disabilities and stabbed them to death in their sleep.
You know, mercifully.
Often people say, “Erin, I like, don’t even see your wheelchair--you’re not even disabled to me.’’ It’s meant to be a compliment. And I understand the spirit, but when something like this happens, I can’t help but see the danger in praising me by distancing me from disability. If you have a different category for disability you are comfortable with and disability that repulses you, you imagine all those people in the care facility as being nothing like me.
That’s not the reality.
A couple years ago, potent bacteria gave me a bladder infection that went septic. I get bladder infections frequently as a side effect of catheterization. I don’t usually need antibiotics for them as they tend to clear up on their own. But this one was out to murder me. I had already been admitted twice with what must have been the same strain, so by the third time it wasn’t fucking around. I spent three nights in ICU where a nurse stayed in the room looking at a computer screen constantly updating her with all my vitals. Eventually everything stabilized enough to put me in a regular ward where they told me they had finally discovered the antibiotic that would kill it. Their infectious disease specialist recommended that they give it to me for 14 days, straight to my heart. Which required a PICC line, a semi-permanent IV inserted into the vein in my arm and threaded via catheter into my heart. This way, I could go home for the duration of my treatment. The procedure is supposed to be pretty routine, but the poking and pinching busted my bicep muscle and irritated my brachial nerve. Within hours, my arm had swelled and was immobilized with pain.
I couldn’t push my chair, I couldn’t raise my arms to change or bathe. I couldn’t safely get in and out of bed. At the same time, my wheelchair was missing a front wheel, which made it tip forward suddenly, plunging me to the floor, and I could no longer safely catch myself. The hospital couldn’t release me under these conditions.
There were two options:
Find a loaner chair to send me home with.
Or.
Put me in a care facility for the duration of my treatment.
At that point, I was a person with multiple disabilities who could not independently meet my basic needs. The hospital bought me a standard-issue, hospital wheelchair and sent me home. I avoided the care facility route. If I hadn’t, and someone with a hatred and disgust for disabled people had targeted the care facility I was in, I could have been slaughtered in my sleep like those people in Japan without the murderer knowing how sexy, important, and loved I was.
The Japanese hospital and, by extension, the Japanese media, never released the names of the victims, to protect the families…from the shame of being related to someone with a disability.
I would be dead, and no one would even hear my name.
I have managed to achieve a status where people envy me more than they pity me, but I can’t count it as a win if that pity and discomfort still applies in great swaths to all other disabled people. And while I was thinking about my responsibility as a #sexicon to the safety, success and sex appeal of my people, I was also thinking about boyfriends.