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The Interdisciplinary Work of Lyss England

Posts tagged autonomy

aka. “Acknowledging autonomy as a means of building healthier communities”

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(image shows myself and my best friend, Luna the shepherd dog, in an open field surrounded by trees, representing simultaneous autonomy and interconnection).

Can you think of a time in your life where you wanted to be part of a community of people who you grew close with, even loved? Where you put a lot of time and energy into creating that community with some sort of shared goal or intention? Me too.

I’ve been a part of theatre communities where we worked on shows together, activist communities where the shared goal is dismantling rape culture or working towards environmental sustainability, and casual communities where the goal is simply to be friends. Sometimes this more casual community building looks like a group who gets together to share meals or to work together in a garden. Sometimes, like many people in my generation, this means online group chats.

Can you think of a time where you felt let down by your community? Maybe you were going through something really tough and craved the support of the community you’ve worked hard to build. Maybe you felt ignored or under appreciated. I can relate. It’s really easy when we feel this way in our communities to chalk it up to “toxic communities” and honestly, that’s the script that is growing to dominate a lot of modern thought around social justice. But I think that this is an oversimplification at best, and, more honestly, actively detrimental to the overall goal of community care and individual wellness that social justice aims to work towards.

Community building as a concept is complicated and I see a lot of discussion around some of the key pieces these days. Things like self-care, balancing emotional labour, and accountability. While it’s exciting that these discussions are happening at all, and it’s to be expected that thinkers will stumble their ways through these complex and imperfect topics, I, a white, queer, disabled woman who lives with CPTSD, am increasingly finding that the shallow way we discuss this stuff is more harmful than helpful.

Basically, what I’m asserting here is that the problem isn’t that we are building toxic communities, it’s that we are empowering individuals to engage in behaviours that are toxic to themselves, and thus, toxic when it comes to building healthier communities. We mistake enabling self-harming behaviours for care in attempt to acknowledge that the violence perpetrated against marginalized people is real and unfair. However, by encouraging a victim mindset, we effectively marginalize people who have been affected by systemic violence even further.

I don’t believe that it is my job (or my business) to dictate how anyone else chooses to cope with or react to their experiences in the world. I believe that is up to each individual, and that building healthier communities relies on each individual to do their own work. It’s easier, when we have experienced trauma and/or violence to follow scripts where we validate one another’s pain (effectively playing in to the same power dynamics we claim to be working to dismantle) rather than addressing and taking ownership for our own experiences and subsequent (re)actions.

What it comes down to for me, as an individual, is this: do I want to commit to my trauma and live in it, or do I want to live my best life where I acknowledge my trauma without allowing it to control my life?

In the context of a society where there are unequal distributions of power, I would agree that it’s true that one cannot fully control what happens to them or every event of their lives, but what one can control is how they choose to respond to what happens. When it comes to community building, when we are all so committed to living in our own emotional shit, we tend to project that on to other people in our community.

For me, my dissatisfaction in communities I’ve experienced as toxic has a lot less to do with anyone else’s actions but my own dissatisfaction with myself. This results in me being so wrapped up in how worthless I feel (because trauma stuff) and feeling so bad about how I’m not feeling cared for by my community that I’m not being a good community member either. I’m not actually taking care of myself in a deep way either. I’m just wallowing in my own shit. Living there. Committing to it. It’s a lot easier to chalk my feelings up to other peoples’ actions rather than taking ownership for my own and doing something to actively work with whatever it is I’m going through. It keeps me trapped in my own shit.

Escaping and preventing toxic communities comes down to changing our perspectives from “they did this to me and this feels awful” to “this happened and it feels awful because I’m perceiving it as something that was done TO me that I have no control over.”. The reality is that you do have control over what you do with your hurt. Sure, communicating to the person you felt hurt by may be helpful, but what will be really helpful is you changing your perception (and thus, your reality) of the hurtful thing. It’s not about ignoring the hurt or “choosing not to feel it”. I mean, that sounds nice, but we all know it’s not that simple. It’s about feeling it and acknowledging that it probably had nothing to do with you and everything to do with the other person/people. What is yours is your reaction. When we accept people for where they are at, it makes for far healthier and happier interpersonal relationships. And when we can’t reconcile where someone’s at with the reality we’re choosing to actively build for ourselves, we get to choose the context in which you relate to that person.

This isn’t to say that we should stick around people who contribute to us feeling bad or who we don’t ultimately feel are conducive to our journey in wellness. It’s also not about anyone being “at fault”. It’s never so simple as a simple perpetrator/victim dynamic. We are all hurt beings in some way, we are all trying to stumble our way to happiness and fulfillment. But what I think we, as social justice oriented thinkers and carers, would benefit from is actually acknowledging the role of autonomy in community building.

(Big thanks to Sabrina Scott and Susan Kesper for taking the time to provide feedback on this piece and supporting me in making it better!)

 

 

 

 

 

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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.