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The Interdisciplinary Work of Lyss England

Posts tagged disability

The sky turned grey the day after
To match my head the day after
I lay on the table and
allowed myself to be at the mercy of
doctors and this body
The one that just seems to
Keep failing me
Betraying me
When all I want is to
do this thing I feel called to do
I-
Motherless child
I-
Childless mother
Felt grey the day after
Cervix still open
Another lifeless love
Lifted from my body.

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Listen to the podcast here!

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Check out this special episode where I talk about what Meniere’s Disease is, how I was diagnosed, my experience living with it, and the treatment strategies I use to manage the symptoms. If you’re curious to know more about what it’s like living with a disease that causes vertigo, ear pressure, hearing loss, and tinnitus, this is the episode for you.

If you have other questions about this disease or the other chronic illnesses I live with, please email me at lyss@nothingexistsradio.org or reach out to me on Facebook and I am happy to respond, no matter how personal!

Featured Tunes:

Listening by The Used
Verranzo by The Unlovables
Run in Circles by Face to Face
No Shadow by Ryan Adams

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Check out my interview with Amy Anderson-MacArthur (@veganmomofmany) about:

– Her favourite story form her bartending days
– Moderating a Vegan Keto group, “Vegan Keto Made Simple“, (and why she eats the way she does)
– Managing chronic illness naturally
Having a stroke during her fifth pregnancy at the age of 30…and life afterwards
Sobriety
– Using CBD oil and cannabis vs. Wine Mom culture
– Being happy and the attitude it takes to get there
– Parenting a child with Sensory Processing Disorder
– Encouraging autonomy in children

Featuring Fresh Nova Scotia Tunes:

“Frantic” by John Rodgers and Julian Warme (Written in one night!)
“On Crutches” by John and Belinda
“Chips” by HighJinx and J-Hooligan
“Butts” by Brock MacArthur

 

First, some background…

I am a person who lives with several chronic illnesses and who manages these illnesses through diet, lifestyle, and using cannabis.You can read, in detail, about me discovering the benefits of cannabis here.  I’m a person who initially became a medical cannabis patient under the the MMAR  and then the MMPR. I’m also a person who works full time in the cannabis industry.

I am a person who has, at one point, received a letter from Health Canada telling me I’d no longer have the option to grow for myself.

I never received a letter when some of this legislation was found unconstitutional .Then came the ACMPR. That’s where medical patients sit now. Confused? Here’s a timeline.

The current legislation (assuming you’re not going to actually go through to read all of those links) relies heavily on cannabis production through Licensed Producers (LPs) to supply patients with their medicine. The mass scale of these grows inevitably results in lower quality medicine, due to the complexity of the nature of the plant. There are several reasons for this, one of them being that LPs, by design, are simply not meant to operate in integrity to the plant (or to the benefit of the patient). The object of an LP is to make money in this booming industry, effectively pushing aside “grey” industry experts and patients. In fact, unless you have some investors with major money and influence, and can’t even start an LP. You can really see how this plays out practically when you consider the number of LP owners or investors who are either former cops or politicians.

It’s not uncommon for patients who rely on LPs to have their medicine recalled or unavailable. With the introduction of the recreational legislation, there will be even more pressure on these publicly owned monopolies that already struggle to keep up in a rapidly growing medical market, let alone a recreational one.


Now, some context:

Here are the party’s platforms regarding cannabis legislation:

Liberals:

  • Plan to regulate the sale of cannabis through the Ontario Cannabis Retail Corporation (basically the LCBO)
  • The start up cost is projected to be $48 million and it’s projected to generate a net income of $100 million during the 2020-21 fiscal year

Progressive Conservatives:

  • Although the PCs haven’t released a formal platform, Doug Ford has stated the following:
    • “We’re going down a path that no one really knows.I have been open to a fair market and letting the markets dictate. I don’t like the government controlling anything no matter what it is…. I’m open to a free market and I’m going to consult with our caucus…. I don’t believe in the government sticking their hands in our lives all the time. I believe in letting the market dictate.”
    • “we got to be super, super, super careful” in regulating the cannabis market.

NDP:

  • Andrea Horwath has said:
    • “We don’t want valuable farmland paved over,” said Horwath. “Neither do we want to see it go to massive marijuana crops. We need to see regulation and quality control. People need to know what it is they are selling; people need to know what it is they are buying.”
    • “I don’t know if 40 dispensaries will achieve their goals of taking it off the black market”

Green Party:

  • Regulating and licensing small businesses and dispensaries to sell cannabis in a safe and controlled way
  • Ensuring tax revenues from cannabis sales are used to fund education, mental health and addiction programs
  • Conducting a pilot project to test the private retailing of cannabis by small businesses alongside the LCBO’s new stores during the first two years of legalization

And my critique…

Only 2/4 parties have a clearly defined plan around cannabis legislation, which leads me to believe that the Liberals and Greens are the only parties that understand

a) the vast potential of the cannabis industry

b) the importance of managing medical and recreational access to cannabis for medicinal reasons and also to reduce the black market, and thus, various forms of violence that include criminalizing individuals.

The problem with the Liberals’ approach is that there is opportunity and increased access in the privatized cannabis industry- especially when regulated in addition to publicly owned grows and dispensaries. Relying solely on publicly owned production facilities will put more pressure on Canada’s already flawed LPs. This is bad news for patients who rely on LPs. It also doesn’t leave appropriate space for Indigenous communities, who have exceptionally valuable knowledge about what works in the cannabis industry in a way that centers patients and the plant itself to participate in an industry they’ve had a significant role in building and a cultural right to engage in. 

Similarly, activists (many of whom are patients!) are being persecuted and excluded from the industry they have built through Liberal “legalization”. It’s no secret that people of colour and people with disabilities are disproportionately criminalized for their participation in a grey or black cannabis industry they’re forced to participate in because of the structuring of the Liberal conception of cannabis legislation. In fact, “black people with no history of criminal convictions have been three times more likely to be arrested by Toronto police for possession of small amounts of marijuana than white people with similar backgrounds, according to a Toronto Star analysis.”.

It should be noted, that none of the parties’ platforms include anything regarding pardoning peoples’ prior criminal convictions related to cannabis upon legalization.

The Green’s approach makes the most sense. That being said, I’d like to take the opportunity to briefly elaborate on and provide feedback on the Green’s platform related to cannabis legislation:

“The Green Party believes that the distribution of Cannabis in Ontario is an opportunity to create jobs and boost local business. Allowing for a mix of public and private vendors will allow us to serve many more locations and eradicate black market sales.”

I agree with this. I think it comes down to mixing private and public vendors, so as to increase points of access as much as possible. These multiple points of access are very important-

a) Private businesses with appropriate regulations. Why not create a group of diverse industry experts to brainstorm around what regulations are reasonable to go from there?These regulations ought to specifically provide reasonable space for Indigenous participation in the industry. It also ought to include legislation around smaller-scale craft grows (with multiple tiers containing appropriate regulations according to the size of the grow).

b) Publicly owned businesses (ie. LPs) with a MAJORLY revamped set of regulations that would allow for the plant to be managed in a way that maintains its integrity. This means no pesticides and the use of sustainable practices. 

 

c) The ability for people to grow for themselves with an open genetics market/regulations around restricting genetics. Look no further than California to see what happens when you allow monopolization and restriction of cannabis genetics. Cannabis is a genetically complex and diverse plant that varies greatly in cannabinoid content and creates vastly different effects depends n the strain. What helps one person with some symptoms may be totally different than what helps another, and people ought to be able to access the medicine that works for them.

“Revenue capture in sales must be dedicated to health and education programs that help consumers make informed decisions that protect them, their families and the general public”

Cool. Keep in mind: a key priority should be on preventing stigma against people with disabilities and education ought to be informed by the wisdom of Indigenous people who have used this medicine traditionally for far longer than any of our governments have been involved in regulating it.

“When cannabis is legalized, it should accessible, safe and help local businesses to create employment in both the public and the private sector.”
Again, it comes down to those multiple points of access I discussed earlier.
There’s a lot of world building to do here, but I think that the green Party’s platform is a good place to start. Let’s get to work.

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.

The intention of this project is to promote healing and storytelling through community and performance. There will be an open call to anyone who wishes to get involved in the process of creating a piece of performance art regarding the topic of disordered eating and performance.

There will be efforts made to encourage a wide range of people to participate in the workshopping and performing process. This includes diversity in age, gender, race, sexual orientation, ability level, and type of disability. While, ideally, most of the collective would be comprised of people living with disordered eating behaviours, it may also be interesting to hear from people supporting loved ones living with disordered eating behaviours or people who work closely with performers living with disordered eating behaviours. There is no cost to participants associated with this program.

There will be a five week series of workshops where this group of people will discuss things such as:

How does disordered eating affect performers? How does disordered eating affect performance itself?

What is performance?

What is disordered eating?

How does performance affect people physically and emotionally?

The difference between intentional and unintentional performances regarding disordered eating

Is there a place for people with disordered eating behaviours in spaces that promote performance?

How can we support one another regarding disordered eating behaviours?

while also taking care of ourselves?

How can being creative contribute to healing?

How does body image affect performance?

The lived experiences of performers with disordered eating behaviours?

Any people involved in the workshopping process will be invited to work on the actual writing of the performance based on the notes from the workshopping process. The format of performance will be discussed amongst collective (monologues? One act play? Music? Dance? Movement? Visual art? Combination?) There will be 4 rehearsals and two performances at the end of the workshopping process. Tickets will be sold for $20 each, with compensated and discounted tickets available to anyone who would like to attend, but cannot afford the ticket price. There will also be a “pay what you can” donation jar available at all performances and throughout the workshopping and rehearsal process.

Other topics will likely come up, and anyone involved in the collective will encouraged to bring up topics that are relevant to the project. Notes will be taken at each workshop. Workshops will be co-facilitated by Lyss England and Jillien Hone. Workshops will be done according to To the Root’s community discussion format.

 

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collabart.JPGThe above is a collaborative piece of art that was produced during the process of The Performance and Disordered Eating Project. The artists involved are Lyss, Jill, Lindsey, MJ, Clayton, and Marcela.

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