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The Interdisciplinary Work of Lyss England

Posts tagged ableism

Screen Shot 2017-10-29 at 5.36.26 PMContent- medical system, ableism, denial of access, chronic pain, mention of parent death, pharmaceutical medication, naturopathic medication.

I was eight years old, running some relay race in gym class, when I first experienced the pain. Burning, throbbing, aching pain in my ankles and knees. My ankles gave way, and I fell, embarrassingly, in front of my peers. That was how it all began- a lifetime of chronic pain.

Between then and when my mom got sick when I was fourteen, she advocated or me to have any and all testing done to rule out any potential chronic health issues. She had fibromyalgia, and had since my brother was born, so she knew to believe me when  said I was in pain…though I don’t think she wanted to believe the extent of it. As tests came back negative again and again, I grew to normalize my pain, assuming everyone lived this way. By the time I was in university, the pain wasn’t just in my ankles and knees anymore- it was overwhelmingly in my shoulders, neck, and back, though my legs also often ached and I couldn’t seem to digest any food or drink aside from water and milk chocolate. It was overwhelming, but as far as I was aware, everyone felt this way.

If anything, I believed that the issues all stemmed from my depression, which is what my doctors told me after yet another CT scan came back normal. My doctor had prescribed me Prozac and Clonazopam after my mom died, days before my sixteenth birthday. By the time I was in university, my prozac prescription  had been maxed out and replaced with a high dose of Cipralex. Despite this, I was actively self-harming (via cutting and self-starvation) daily and was in more physical pain than ever.

Then the accident happened. You can read about it here. After that, my pain got infinitely worse. What I had been able to normalize before was no longer something I could even think about ignoring. So I went back to my doctor and we started the torture- I mean testing- process again. CT scans, (“inconclusive”) MRIs, EKGs, and a million other tests I can’t even remember the names of. For one, they put thin needles in my nerves and sent shocks in to test my nerve response. The specialist didn’t believe me when I said it was excruciating. At some point, my doctor diagnosed me with fibromyalgia. In other words, he gave his lack of understanding about what was going on with me a name that was meant to acknowledge and validate my wide-range of painful symptoms.

I took to the Toronto Public Library, reading anything and everything I could get my hands on. I made lists of potential treatment options- both based in traditional Western medicine and more alternative methods. I  stepped into the role of advocate for my own treatment and watched the battle unfold. Since I was no longer a passive recipient of my doctor’s decisions, he and I began to clash. At one appointment, he suggested the third or forth pill I could try (he’d prescribed me more medication, Lyrica and Tramadol, on top of my psych meds upon my diagnosis).

I said, “I use cannabis to manage my symptoms and have for years, that’s how I am able to function. Can you please give me a prescription so that I don’t run into any issues with the law while trying to medicate appropriately. My understanding is that fibromyalgia makes me eligable for this prescription”.

He said, ” I will maybe consider it after you have tried every approved pharmaceutical drug approved for your condition”.

He sent me to a pain clinic in Hamilton, where the doctor prescribed me Gabapentin and began to give me nerve block injections, a cocktail of drugs injected directly into the nerve in the curve where my neck and shoulder meet with a long, thick needle. The first time, I screamed the way people cry when they get punched in the nose. The spasm I experienced throughout my entire body was simply indescribable.

“Be quiet, you’re going to scare the other patients,” said the specialist. He turned to my partner, “don’t let her read up on the Gabapentin, I’m sure she’ll just end up with all the side effects if she does that”.

As it turns out, Gabapentin was one of the medications I got the most side effects from. It’s also the most common medication people recommend to me to this day when they find out I experience nerve pain.

It took three or four trips to the pain clinic before the specialist diagnosed me with neuropathy and declared that nerve block injections were not an appropriate treatment method for me after all.

I don’t even remember how many medications I tried to appease my doctor. Lyrica, Gabapentin, Tramadol, Nucynta (a powerful opioid similar to oxy), Cymbalta, Amitriptyline, Prednisone, and more. I was a full-time student in the first few years of my twenties, and feeling like a drug addict because I was following doctors orders. It was around this time that my partner’s father accused me of being an opiate addict and threatened to disown us (flash forward- we ended up disowning him). It was right around this time that I failed the only class I would ever even come close to failing. It was right around this time that I was constantly suicidal because the quality of my life was so deeply affected.

I began to try every alternative treatment I could think of- yoga, acupuncture, massage, naturopathic remedies, homeopathic remedies, energy therapy… Most of them seemed to work a bit better, but I had a  long way to go. Regardless, it cemented my commitment to having some control over how I managed my symptoms.

I went back to my doctor and said, “I’m done with this. I don’t want to me on drugs anymore. I want to manage my symptoms naturally, and I know it’s going to take a lot of work, but this is what I want to do. I brought my paperwork, I’ve filled it out, please sign off on a cannabis prescription.”

He said no.

I found another doctor through a friend who was compassionate and gained legal access under the MMPR in 2013. After evaluating my symptoms, he prescribed me 20 grams per day so that I could tincture or eat it if I wanted to, rather than smoking it. At the same time, I (against the advice of my doctor- don’t do this!) went off all my medication cold turkey and changed my diet to exclude gluten, sugar, and nightshades. I went through about two weeks of the hell that is opiate withdrawal and sugar withdrawal combined, and then almost immediately noticed a huge difference in the way I felt. I still lived with serious pain, but I was able to manage it- through choices I made.

Because my prescription is so large, I realized the importance of having access to grow it myself. It would cost over $100 000/year to purchase my medication from an LP. Since having my prescription, I’ve experienced two sets of law changes and the advent of recreational legalization.  At one point, I literally received a letter form Health Canada telling me to destroy my plants because they were no longer allowing patients to grow for themselves. LPs were to be the only option. While I’m excited that access will be easier for many people and they won’t have to go through what I did, I’m also terrified that it may impact my access moving forward. My access, and thousands of other people who could probably tell a story similar to mine.

I am 26 years old, I received my diagnosis 7 years ago, and I work full time, volunteer 10-20 hours/week, maintain countless beautiful relationships in my life, and manage my pain pretty damn well overall. I smoke a ton of cannabis, am conscious of my lifestyle, eat really well, go to therapy once a month, and take naturopathic medicines. Because that is how I choose to manage my pain.

I want to see the widest possible range of access for this versatile plant. I want to see people having access to grow their own, cultivate the strains that work best for them. I want to see dispensaries where  people can easily access multiple strains. I want to see mom-and-pop shops instead of LPs. I want to see less stigma, because autonomy is important for disable people like me. Access is important to disabled people like me.

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CW: bodies, trauma, rape, rape culture, body modification, consent, coercion, violence, assault, police mention, racism, transmisogyny, sexism, ableism, healing
I’ve always loved body modification- tattoos, piercings, weird hair. I have my ear lobes stretched, and have for a long time. I have 17 tattoos, and have had pink, purple, blue, white, and red hair. At various points in my life, I’ve pierced my eyebrow, labret, lip, nostril, ears x like a million, bellybutton, and nipples. I also have my septum pierced. I think part of it is that I like to shock people (it weeds out those who are judgmental based on appearance really easily), I like to set myself apart from the preps (as any Good Punk does), and I simply appreciate the aesthetic. As a sexual assault survivor and a person in recovery from an eating disorder, I have also found found an immense amount of healing through the choice to modify my body in a way that suits my aesthetic in a way that is permanent (tattoos), or semi-permanent (piercings and hair). I get the choice. I get to consent. As an artist, I get to treat my body as a canvas. My body tells my stories in a way that I can always hold with me. I can see them, and I know they are real, even when I’m not sure what else is. I like the way I look because I love my body modifications. Modifying my body has been a hugely liberating, empowering, and healing process for me.
I grew up in a Suburb of Toronto that has since become a Big City. Then, I lived in a mid-size University Town full of hippies, anarchists, and students. For a period of time I also spent a lot of time in the Toronto Punk Scene. In all of those places, I found my people. I had a community of people who, like me, considered their bodies art forms that told their stories. To them, the ways I choose to modify my body weren’t overly shocking. In fact, my modifications really weren’t particularly radical at all. After I finished my undergrad, I moved to the Small Town where my partner had grown up. in this Small Town, there is a vibrant music, theatre, and art community, and on top of that, it seemed like the ideal place where we could slowly build our careers and raise our one-day, hypothetical family. 
In spite of the vibrant arts community and the small, but mighty radical community (which looks a lot different than the radical communities of the University Town and Toronto Punk Scene), I began to run into the problem my preppy parents had always warned me about: the vast majority of people in this Small Town took one look at me and identified me as not only a New Girl, but a Freak. In the 3 years I’ve lived here, I have grown to be a part of this community, and I have a lot of love for it. But I have also experienced violence based on the way I’ve chosen to modify my body. 
Now, I should note here that I chose to modify my body, and I chose to settle in a Small Town. There are many demographics of people who experience violence based on things that are not choice, but are visible and significant parts of who they are. As a white woman, I do not experience the violence that people of colour face in my community, and systemically. When my Small Town’s police association chose to launch a “Blue Lives Matter” campaign to make money to benefit the police, I had the privilege to make noise about how inappropriate that was without the fear of being harassed or attacked. As someone who is identified as cis by others, I do not experience the violence that visibly and openly transgender people face in my community. I can use a public restroom without people following me in and inquiring about my genitals. As a person who, more often than not, passes as able-bodied (even though I’m not), I do not experience the same types of violence as people in the community who are visibly disabled and/or who use visible mobility aids. I am able to shop in the stores downtown. The level that these acts of violence exist on are systemic, and they thrive in my Small Town. The violence that I am talking about regarding my body modifications does not diminish the fact that there are people in my community who experience violence on levels that I am privileged enough to never have to experience. 

That being said, I am a disabled, mad, modified femme who has experienced violence that is rooted in these subject positions and the power structures they exist in in the context of my life and the social world around me. I could write a million essays on gender-based violence and ableism and madness (okay, I already have and will continue to), but this essay isn’t about those things directly as much as it is about the violence I’ve experienced because I have chosen to modify my body. Even more specifically, this essay is about my septum piercing being a site of violence. My horseshoe-shaped, silver, 16 gauge septum ring.

Sometimes these acts of violence are subtle. Sometimes they’re off-handed comments about how it looks weird, or about how other people don’t like it. I know it may seem like a stretch to consider those things violent, but when one thing about you is a constant source of harassment, that begins to feel a lot like emotional abuse. And that shit feels violent.

It felt violent when a manager told me I could have the job if I took out my septum ring because it made me look like a freak.
It felt violent when another manager brought up that, although she liked my look, some clients may not feel comfortable receiving counselling from me because of my septum ring, and that this has been an issue in the past.
It felt violent when people came into bars I used to work in and told me I’d be so pretty without my septum ring and that I should take it out.
It felt violent when family members told me the same thing.
It felt violent when a youth I was working with told me I was stupid for having a septum piercing. 
I could go on for a while, but I won’t bore you. I will share the most explicitly violent thing that happened regarding my septum piercing though:
 I was working with a youth who loved candy. We went into the dollar store to buy some, and I lead him to the candy aisle. We were intercepted by a middle-aged woman who reached out, grabbed my septum ring, and held on to it tightly while telling my client that this was the best way to “keep my under control”. Shocked, I reached up, held onto the woman’s wrist, and gentle peeled her fingers off of my face. She continued ranting about how I needed to be controlled with a piercing like that, and then reached up and grabbed it again. I blocked her with my own arm, turned my back to her, and made space for my client to pass by me. He was scared and shocked and had a lot of questions I didn’t know how to answer, like, “why did she do that to you?”. 
The escalation of violence regarding my septum ring lead me to take it out (that, and because I felt as though my manager had a point that that particular form of body modification may isolate me from clients, which is the last thing I want, wrong or not). I no longer felt safe wearing my septum ring in public. I felt exposed, vulnerable. I like the way I look with it in, so I continued to wear it at home, but took it out when I was in public. After a few months without it, I put it back in today. I’ll still take it out for work, but on my days off, I want to try it out again.

The fact that anyone feels as though it’s appropriate to police what anyone does with their body or their expression of self feels really fucked up to me. It feels like a violation. The fixation on the way other people look fosters such a toxic culture of alienation and unattainable perfection. It took me a long time to learn that perfect isn’t a thing, and that my stories and how I choose to tell them (including my obsession with embodying them) are a hell of a lot more authentic that meeting a beauty standard set out by anyone but myself. But my believing that didn’t stop that act of violence from happening to me.

I mean, let’s call it what it is. Rape culture. Rape culture is all about coercing people into believing that they’re living authentically and that their identities were formed through consensual experiences. Rape culture it about deciding what is best for other people, touching people without their consent, maintaining control, and stripping control away from people who may question the authority of hegemonic society. Rape culture is why a middle-aged woman felt it was reasonable to grab something that was attached to my face and tell my male client that violating my personal space, body, and choices was the Right Thing to Do.

And I’ve gotta tell you, it sure did feel similar to being raped. I mean, obviously not in such an intense way, but my brain did the trauma thing. I remember freezing and thinking, “she is holding something that is attached to my face and she’s won’t let go” and then snapping into flight mode the same way I remember freezing and thinking, “he is inside of me, and he won’t listen to me saying no” and then snapping into flight mode.

I wish I could say that this essay is a call to action. A call to respect other peoples’ choices regarding how they express themselves, physically or otherwise. A call to get consent before touching people. A call to respect the boundaries of survivors regarding their own healing (and to give people the benefit of the doubt if they choose not disclose their survivor status to you). But it’s not. It’s just one of my stories.