Vancouver Very Impressed by How People Plan to Adapt to the Straw Ban by Serving Milkshakes in Plastic Bowls with Plastic Spoons

*Satire* Vancouver is planning to ban disposable plastic straws despite it being an important accessibility tool for many disabled people

VANCOUVER–As Vancouver moves forward with a proposed ban on disposable plastic straws in a bid to reduce plastic waste, the city council is pleased with how the city’s businesses are preparing to deal with the ban.

The city’s many ice cream parlours have collectively decided to serve their milkshakes in plastic bowls and will be eaten with plastic spoons. As of this reporting, Wendy’s is still doing market research to determine if they need to rebrand their Frosty’s as soft serve ice cream.

Starbuck’s is planning on replacing the straws that are normally used to consume their signature Frappuccino’s with proprietary candy straws. Consequently the cost of a Frappuccino will be going up by $2.00. The company assures us that the candy straws are totally worth it.

7-11 has prematurely filed for bankruptcy because consumers have made it clear that Slurpees are definitely a beverage and they will not be pawned off on eating them out of plastic bowls with plastic spoons. Milkshakes are already ice cream so that adjustment while uncomfortable is acceptable but Slurpees just aren’t milkshakes ok.

Disabled people have pointed out that for many of them straws and disposable plastic straws specifically are an important accessibility tool that gives them access to necessary nutrition.

To them, everyone has explained “oh we’ll make an exception for you”

As of this writing, no one has actually elaborated on what that exception will be or how it will be implemented but this reporter has been repeatedly assured that it will be totally great and that no one needs to worry about it.

Vancouver city coucil concedes that straws are probably necessary to dribk bubble tea. A limited exception for bubble tea shops.

Well, I guess the environment is solved.

 

 

 

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I was “So Lucky” to Review Nicola Griffith’s New Book: A CripReads Review

so lucky cover

Image Description: The cover of Nicola Griffith’s book “So Lucky”. The title and author’s name appear in a large font made to look like scraps of burning paper. They appear on a black background

When I was asked to write a review of Nicola Griffith’s upcoming novel “So Lucky” (to be released May 15) I had no idea that the most frustrating part of the process was going to be figuring out how to summarize the book without spoilers. I have ultimately decided to give up on that entirely and just copy and paste the summary of the book provided by the publisher. I will only preface this summary with the opinion that I think this summary is both misleading and does not do the book justice.

So Lucky is the sharp, surprising new novel by Nicola Griffith—the profoundly personal and emphatically political story of a confident woman forced to confront an unnerving new reality when in the space of a single week her wife leaves her and she is diagnosed with multiple sclerosis.

Mara Tagarelli is, professionally, the head of a multimillion-dollar AIDS foundation; personally, she is a committed martial artist. But her life has turned inside out like a sock. She can’t rely on family, her body is letting her down, and friends and colleagues are turning away—they treat her like a victim. She needs to break that narrative: build her own community, learn new strengths, and fight. But what do you do when you find out that the story you’ve been told, the story you’ve told yourself, is not true? How can you fight if you can’t trust your body? Who can you rely on if those around you don’t have your best interests at heart, and the systems designed to help do more harm than good? Mara makes a decision and acts, but her actions unleash monsters aimed squarely at the heart of her new community.

I went into reading this book knowing very little about it beyond the fact that the main character was dealing with the transition of becoming disabled as an adult. The main character, Mara gets a diagnosis of Multiple Sclerosis early on in the book. I also knew that the author, Nicola Griffith has multiple sclerosis. Griffith also co-hosts the #criplit Twitter chats with Alice Wong, founder of the Disability Visibility Project.

I genuinely think that the less you know about this book before reading it, the better. I also think that you should definitely read this book. It is a good story that is engagingly written. It also offers a great and realistic depiction of disability.

Any attempt to more clearly describe the book or even sections of it would inevitably lead to spoilers.

Now I fully admit that I don’t have MS. The closest I’ve ever come to experiencing MS is when a former coworker became convinced that my cerebral palsy was really MS and spent a week trying to convince me that I didn’t understand my own body. That said, there are a lot of moments in this book that deal with situations that are not diagnosis specific.

What I love most about this book is how real those moments of the disabled experience are. I loved reading about how Mara engages with her newfound disability and how she shifts how she interacts with the rest of the world. I love that she makes decisions that I disagree with. I love that she makes decisions that I wouldn’t because she considered an angle that I hadn’t. I love that she is a whole character with a real life.

Mara also offers a level of intersectionality that we rarely get to see in media representation of disability. She is a woman, she is queer, we get to see her navigate relationships, she isn’t desexualized, and she surrounds herself with a diverse group of friends and colleagues.

My only real criticism of the book is that the ending feels rushed. It’s a complete ending and all the loose ends are tied up but it just feels rushed. Basically, I finished it and wanted more.

The book is good and you should read it but I would be remiss if I didn’t acknowledge why this book is important to me. There have been so few opportunities in my life where I have been able to see myself in media. While, Mara and I are very different people with different disabilities, we still share common experiences. The way that Nicola Griffith navigates the nuances of disability feel more real than anything I’ve read by a nondisabled person. It is real and raw. Griffith doesn’t pull any punches just to seem more approachable for a nondisabled reader and even among what little fiction writing about disability by disabled writers there is, this is still a rarity.

I really hope that this will be the start of a trend and that there will be more books with unapologetically disabled characters that are written by people who really understand what that means.

So Lucky will be released on May 15, 2018 for more information on where and how you can purchase a copy click here.

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

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If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

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If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

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April has Never Been About Autism Awareness, It has Always Been About Money

So April is over and with it “Autism Awareness Month” and what have we learned?

How much did you learn about autistic people?

Did you interact with autistic people?

What awareness campaigns did you participate in?

Did you give money to or purchase an item or service that shared a portion of the proceeds with an autism charity?

If you did the latter can you tell me the goals and intentions of that organization?

No?

I’m not surprised. Autism Awareness Month would more accurately be called “Autism Fundraising Month”. The month where everyone buys something with a puzzle piece on it and proclaims that they are raising awareness for autism. But what awareness is that? and has it done any good?

If you posted about the puzzle piece pedicure you got for Autism Awareness Month on Facebook and you can’t answer basic questions about autism much less the organization that benefitted from your spa day then you didn’t actually do anything for raising awareness. You attended a fundraiser and that is a different thing.

A fundraiser is an event where an organization solicits donations for their organization.

An awareness campaign should be where an organization starts putting that money to good use through meaningful, targeted learning objectives.

Getting a puzzle piece anything in April is really just a good way to show just how unaware of autistic people that you really are. The puzzle piece is, after all, a controversial image within the autistic community (here defined as actual autistic people only) many people do not like it. This information is pretty easy to find with a google search. And if you don’t actually care what actual autistic people think about things that directly impact them, then you can consider this academic study that came to the same conclusions (link leads to a paywall). The conclusions are pretty clear

If an organization’s intention for using puzzle-piece imagery is to evoke negative associations, our results suggest the organization’s use of puzzle-piece imagery is apt. However, if the organization’s intention is to evoke positive associations, our results suggest that puzzle-piece imagery should probably be avoided.

All those puzzle pieces and other vague statements of support for autistic people that nonautistic people proudly post about on social media do absolutely nothing to increase awareness and in some cases as with the wide array of autism inspired puzzle piece paraphernalia may actually be achieving the opposite of awareness. These images ultimately mislead people about what autism is and what it means to live in the world while autistic.

Beyond the fact that for the most part Autism Awareness Month campaigns have everything to do with fundraising and very little to do with awareness, the continued conflation of the two during April actively hurts autistic people. Not just because for an entire month we are inundated with distressing images that people have been misled into believing are helpful. Charities maintain a level of cultural status that often overshadows that of the people they claim to serve. So if an autistic person attempts to inform someone who has proudly displayed their participation in a fundraiser and presented it as an act of awareness raising that their action was at best meaningless and at worst actively harmful, that person is going to get defensive. It is not uncommon for people who have been challenged on their proud act of solidarity to shout down a member of the group they just publicly claimed to support. They’ll believe the charity over autistic people. Because the charity told them all they had to do was publicly say they supported autism awareness month and to put a slogan or a puzzle piece in some proximity to their person.

They were promised that an empty gesture and a financial donation were good enough. Being told that the action is functionally meaningless is unsurprisingly going to make them angry.

I’ve said it before that nondisabled people have set the bar for solidarity with disabled people at simply not actively hating us. But that tolerance only lasts until a disabled person tries to demand more. To demand real awareness and the accompanying acceptance that is really needed to raise our standing in society.

Yet, we must continue to call out individuals for their false solidarity. Nothing will change unless we do. People should not be left comfortably sitting in the lie that simply declaring solidarity and throwing money at a charity actually means that they care about autistic people.

Anyone who claims to have participated in an awareness campaign for any marginalized group of people should be able to answer the following questions.

What is your intention in publicly sharing your experiences with this campaign?

Who organized the campaign?

What does that group/organization do?

Were members of the group being advocated for involved in the planning and delivery of the campaign?

What do members of that group think about this kind of activity?

Did the campaign give you the opportunity to meaningfully engage with members of the group being advocated for?

What did you learn?

What information was new or surprising to you?

Can you explain the information you learned to someone else?

If you donated money, do you know what that money will be used for?

If answering any of those questions would be difficult for a person participating in your campaign then it has nothing to do with awareness and the responsible thing to do would be to remove any mention of awareness from the branding of that campaign.

Awareness requires that people know more than the basic fact that autistic people exist. If your version of awareness cannot lead to acceptance then your awareness is an illusion. You just want a metaphorical cookie for giving a charity money.

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

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If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

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If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

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#HotPersonInAWheelchair and the Longevity of Bigotry

Four Years ago former Jeopardy Champion Ken Jennings tweeted an offensive joke

So, why am I writing about a four-year-old tweet? Isn’t it old news and basically irrelevant now?

Unfortunately, no. This tweet caused controversy at the time and because it is still online, people are still using it to harass disabled people. I had four people use it against me yesterday.

The problem with things like this is that they don’t just fade into obscurity. Periodically, someone comes across it and starts engaging with it again. The reason I was harassed (and yes I would classify it as harassment) about that tweet yesterday is because I commented about how people were still engaging with my response to the tweet. Which means people are still engaging with the tweet is still impacting people.

I tweeted my displeasure that Jennings hadn’t deleted it. He actually responded to me with this justification.

This seems like a good responsible take, except that it falls apart the second you remember that people are still being harmed by that tweet.

Twitter does not have a mechanism to encapsulate old problematic tweets with an explanation about how you now understand that it was harmful, that you regret doing it and you want to leave it up as a reminder of the harm it did. Even if Jennings wrote something to that effect among the replies, there are 1600 of them. People can hardly be blamed if they don’t know he’s sorry about it now. It also doesn’t stop the tweet from being used by others who do just think insulting wheelchair users is just hilarious.

A far better response would have been to take a screenshot and write and publish an apology and then delete the tweet. Jennings is famous enough that he could have found somewhere to publish that apology. Then he wouldn’t be whitewashing his past and he would have stopped the tweet that he supposedly now regrets from being used to harm others.

Someone accused me of just going looking for something to be angry about. They justified this argument based solely on the fact that the tweet is four years old and I talked about it yesterday.

But, it’s not going to find something that periodically shows up in my notifications. That’s just acknowledging that people are still interacting with four-year-old bigotry and that’s worth talking about. Bigotry doesn’t necessarily get stale and less bigoted with age.

You can’t absolve yourself from past bigotry if it is still harming people. Particularly if there is a way to stop that harm (in this case it’s as easy as deleting a tweet).

Jennings wants to be patted on the back for what amounts to fake contrition. I can’t believe any claim of taking responsibility if taking responsibility means justifying the continuation of harm.

One silver lining of this tweet’s latest resurgence is that it has inspired the #HotPersonInAWheelchair which is a brilliant celebration of disabled beauty and confidence. I do so love the confidence and snark of the disabled community.

Annie Segarra (you can support her on patreon. She also has a YouTube Channel) started it off with this

The whole hashtag is well worth a look, but be advised that some of the images may be NSFW. I certainly hope this protest will be stronger than the bigotry that inspired it.

Jennings should still delete that tweet though and finally really take responsibility for it by apologizing somewhere other than Twitter.

 

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

Click Here to Donate

If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

Become a Patron!

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

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If you want to support my work but are unable to do so financially, please share this post on your various social media accounts.

Reflecting on the Fact that Hans Asperger was Really a Nazi and not just Working from the Inside to Protect Vulnerable People

There have been a couple major articles written about Hans Asperger, the man who categorized what would eventually be called Asperger’s Syndrome and then eventually just folded into the autism spectrum. These articles, the first of which was printed in the New York Times and the second in The Guardian both discuss Asperger’s history prior to and during WWII. A lot of English language research about Asperger has framed him as a man who protected disabled people from the harsher and more lethal aspects of the Nazi’s euthanasia programs. New research that did not rely so much on texts that had already been translated into English paint a much less flattering picture of Hans Asperger. This new research more clearly indicates that Asperger was not altruistic in his actions and personally made decisions that led to the deaths of disabled people.

I was diagnosed with Asperger’s Syndrome thirteen years ago. So how do I feel about the fact that the man who lends his name to a diagnosis I was given (Asperger’s is no longer an officially recognized diagnosis. As of the publication of the DSM V the diagnosis is just considered part of the autism spectrum)?

I’m completely unsurprised to be honest.

Part of this is probably because I never read books like Neurotribes or Asperger and his Syndrome (link leads to a paywall). Both are considered influential works on autism and both paint a kinder picture of Asperger either by glossing over his Nazi ties or suggesting he actually protected his patients from the Nazis. I have no preconceived notions to be challenged in the face of this new information.

Additionally, I’m aware enough of the history of men who are credited with discovering or categorizing other disabilities and that history suggests that if people googled their condition’s namesakes, a lot of people would be uncomfortable disclosing their diagnoses just to avoid association with the people whose names are attached.

Consider John Langdon Down, the man who categorized Down Syndrome. He initially called the condition “Mongolian Idiocy” and if that sounds really racist, it’s because it is. He called it that because he believed that people with intellectual disabilities were evidence of evolutionary throwbacks. He believed that people of colour were less evolved than white people and thus inferior. He further believed that because he could find similar physical traits between certain disabilities in white people and nondisabled people of colour that this meant that they were genetically similar racially. Basically, intellectually people were inferior because they weren’t genetically white.

He was a real winner. You can read more about his theories on race and disability in his 1866 paper Observations on the Ethnic Classification of Idiots. It’s awful so I don’t recommend it.

Ironically, Down Syndrome only became known as Down Syndrome after people finally clued into the fact that the term Mongolian Idiocy is just deeply offensive, so they changed the name to include the name of the man that invented that ableist and racist name for ableist and racist reasons.

I’d really like to sit those people down and ask them what they were thinking.

I’ve never identified as an “Aspie” as many people who received an Asperger’s diagnosis do. I have always felt that autistic far better described my experience and was just easier for other people to understand. So I don’t need to figure out what this means in relation to a label I identify with. I am also unsurprised that Asperger himself would have landed me with the not so flattering label of “autistic psychopath”.

It is interesting that these men didn’t name these conditions after themselves. Other people chose to do that after the terms those men came up with were recognized as harmful.

I am also aware that there is some concern about the revelations about Asperger in relations to people who actively identify as Aspies. There is a socially constructed hierarchy of autism which is usually defined by functioning labels. These are often distilled into high and low functioning. These kind of labels are harmful and many within the autistic community fight against them. Asperger’s Syndrome was considered a milder (read ‘higher functioning’) form of autism so some people who identify as Aspies use their specific diagnosis as a way to signal their place at the top of the hierarchy.

While this behaviour (and yes I know it wasn’t everyone so please no angry comments about how “You’re an Aspie but not like that”) was always harmful to the autistic community at large. There is now a sense that it is even more sinister considering the revelations about how involved Hans Asperger actually was with Naziism.

On that note I’d say, things aren’t worse because a Nazi did it first. The Nazis hold the place in our collective anger, fear and hatred because they did those awful things as a democratically elected (at least at first) and widely supported political movement and governing structure. They weren’t just awful people. They tried and succeeded within their own culture in making bigotry a culturally moral imperative.

So while the parallel is clearly troubling and uncomfortable. People who hold or have held feelings of superiority because of their specific Asperger’s diagnosis are still bad but no worse simply because we now know that Asperger was a Nazi. Their misdeeds are their own.

As for people who simply identify as Aspies because it was a way to claim community, the answer is less clear. While people should be able to identify however they want and Asperger’s name being attached to their diagnosis was a decision made in the 1980s by someone who wasn’t Hans Asperger. Asperger never put his name on the condition, it isn’t a way of claiming ownership or being given ownership of the people who have that label. So in that context, the term Asperger’s is relatively neutral. However, while people may individually decide that they are still comfortable with the label, they can’t force other people to be.

These revelations will inevitably stigmatize the name generally. More specifically because of how many different marginalized groups were targeted by the Nazis, there are just a lot of people who will understandably want to distance themselves from any reminder of that history of violence and genocide.

I suspect that we will see far fewer people identifying as Aspies. This has I think already started since already fewer people will be hearing that term at the point of diagnosis because it isn’t an official diagnosis anymore.

As a final thought…

Can people just stop naming medical diagnoses after the people who first categorized them? Particularly if the term is being changed specifically because that scientist gave it a horribly offensive name, to begin with.

It’s bad enough that people try and define us by our diagnoses. We really don’t need to be defined by our vague association with the people who first studied us too.

 

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

Click Here to Donate

If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

Become a Patron!

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

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I Like That, I Want That, Can I Have That?: When NonAutistic People Don’t Understand Autistic Communication and Punish Us For It.

When I was a child and I answered the phone I didn’t say “hello”, I said “What?”. My mother was constantly horrified at my supposed rudeness and would try and make sure that someone, anyone got to the phone before me.

The thing is though, that I wasn’t being rude or at least I didn’t think so. I was just responding to people on the phone the same way I would to someone who called to me from somewhere else in the house.

When my mother wanted me for something, she would yell my name from the foot of the stairs and I would respond with “WHAT?” I was never penalized for this and I just assumed that if someone was calling you then asking them what they wanted was kind of useful information to gather. I wasn’t trying to be rude. I was just transferring how I communicated in person to how I communicated on the phone.

If someone called to me in person, I responded with “what?” or “yeah?”. No one bothered to explain to me the difference of in person communication and communicating on the phone. So I kept getting in trouble for how I answered the phone and I never understood why.

I was always being told I was being rude when I couldn’t figure out why. It was only years later that I realized that because of the ways neurotypicals have coded language, they always interpreted the words I said as meaning something else.

This is most clearly noticeable in how I used the phrases “I like that”, “I want that” and “Can I have that?”. To me, those things express three different things but apparently to everyone else they only mean two.

Every time I said “I want that” people acted like I was asking for whatever I was referring to. I wasn’t. There was no request in the statement. I hadn’t asked for it. I was conveying the level of how much I liked it. It was an expression of envy, not demand.

While it’s true that I probably wouldn’t have complained if I was handed the object of desire, I understood that asking for things was rude. I was also aware that if I simply said that I liked something, that people would not know to what extent that I liked it. Was it something that just gave me fleeting pleasure or was it something that I would think about and remember and miss.

After, what was probably well over the hundredth time that I had been lectured about not constantly asking for things when I had simply expressed that “I wanted something”. I explained the difference in how I used language. I explained that I wasn’t asking for whatever trinket had fascinated me but differentiating between the things that I simply liked and the things I actively wanted to own. I understood that I wasn’t going to be given the thing.

This, however, didn’t build a bridge of better communication. It created a flustered lecturer who couldn’t figure out how I had come to think that words could be used so literally. I just had to be forced into more standard patterns of communication.

These distinctions may seem obvious or less rude now in a world where it is not uncommon for people to publicly declare a desire for things that they probably won’t ever own. A single all caps “WANT” in a tweet quoting another tweet featuring a luxury item is pretty common on Twitter. Or that same “WANT” posted as a comment on Facebook or Instagram is also a not infrequent occurrence.

At least I was using full sentences and expressing my desire with significantly calmer.

Nondisabled people far too often defend poorly conceived acts of “solidarity” that miss the mark by drawing attention to their intentions. They want to avoid consequences for the impact of their actions because they “didn’t mean it”.

Autistic people do not get the privilege of cloaking themselves in the armour of intentions even if their faux pas is just a failure of empathy and accommodation on the part of the person castigating them.

Autistic people have long been characterized as unempathetic little shits who lack theory of mind (the ability to place themselves in the shoes of others). Much new research rejects this and theorizes a different issue.

The Double Empathy Problem which posits that misunderstandings in communication are a two-way street, as much hampered by nonautistic people’s inability to empathize with autistic people.

Even though I could explain what I meant, I was miscommunicating and was rude. There was only ever need for me to change. Not the person who consistently and often willfully misunderstood me. They knew what I meant. I’d explained it clearly but I had to shift into an imprecise way of speech that was completely unnatural to me. It’s not something that I mastered until after I was diagnosed and could understand why I behaved differently than society expected me too.

The fact that I had a biologically ingrained reason for being the way I was, rather than a society which just uncritically follows and enforces cultural mores was irrelevant. The onus has always been on me to change to suit the comforts of neurotypicals. They never have to hold space for discomfort. They never have to hold awareness of me and my fellow autistics. They get to categorically define our behaviour as rude and wrong so that they do not need to empathize with us. We however, must constantly hold all that space and all that knowledge of their confusing expectations. They demand empathy without reciprocation. It is a wholely unequal power dynamic.

It is a battle we will inevitably lose because we are fighting against our very natures, simply to be allowed to exist in common space with neurotypical people and it’s a losing battle to fight your biology. We will always fall short of expectations and our “rudeness” is used to justify our exclusion.

 

 

How to support my work

I am currently fundraising to attend the International Disability Law Summer School. You can donate to that on GoFundMe

Click Here to Donate

If you liked this post and want to support my continued writing please consider becoming a patron on patreon.

Become a Patron!

If you can’t commit to a monthly contribution consider buying me a metaphorical coffee (or two or more). Contributions help me keep this blog going and support my ongoing efforts to obtain a PhD.

Buy Me a Coffee at ko-fi.com

If you want to support my work but are unable to do so financially, please share this post on your various social media accounts.

Unbelievable Pain: 10 Years of Being Told I was Overreacting to Chronic Pain

I’ve been wearing glasses for the vast majority of my life. I think I got my first pair when I was one. While I can’t say that my history with glasses has been completely uneventful (I am autistic after all), most of my issues stemmed from dealing with getting a new pair adjusted comfortably (AKA my mother’s worst nightmare), then any issues were either routine maintenance—getting a nose pad realigned after one got bent—or because the glasses were faulty—I do not miss that pair of glasses from when I was ten that was constantly losing screws and had the lens fall out about once a week. So, when I was twenty-one and my glasses felt tight behind my ears, I assumed that I either needed to get them adjusted or buy a bigger pair.

The thing is neither worked. When adjustment failed to make my glasses comfortable, I bought a new pair but that didn’t work either. So, I exchanged them for another pair. I was still in pain and the pain was spreading and getting worse. What had started out as pain where the arms touched my head now also hurt pretty much everywhere glasses touched my face. Particularly on my nose. Just taking the glasses off wasn’t enough to stop the pain. It would throb for days.

All of this was going on for months and everywhere I turned people dismissed my pain as just my being autistic and not being able to deal with a little discomfort. Regardless of the fact that I had been successfully wearing glasses without major incident for two decades. I couldn’t wear contacts so I started complaining to doctors.

At first, I was largely dismissed. I was told I was overreacting or that it was all in my head, but I wouldn’t shut up about it. Even though I always described the pain as feeling like it was on the surface of my skin, the doctor decided that it might be an inner ear issue or something with my sinuses, I was referred to an Ear Nose & Throat specialist who found nothing even after a CT scan.

I was still in pain though and it was getting worse. By this time, I could barely stand to wear glasses for any length of time and when I did my right ear would wiggle involuntarily every time I spoke, smiled or ate something causing my glasses to jiggle up and down on my face causing more pain from the friction.

I stopped wearing glasses entirely (my eyesight wasn’t great but I could manage) and the stress from the pain and not being able to find a solution resulted in long-term insomnia which in turn led to migraines.

The doctors decided that it had been migraines all along despite this pain being separate from what I had already described. They decided to check if I had hydrocephalus which involves a spinal tap and at least two MRIs. Spinal taps suck on their own but they also cause hideous migraines. On the day of my second MRI, I was in so much pain that I couldn’t bear to stay vertical. I also couldn’t get to the hospital for my MRI because it was Winter in Saskatchewan and there was so much snow that a bus had gotten stuck at one end of our road and the tow truck sent to get it out was stuck at the other. I eventually got the MRI and I don’t have hydrocephalus. I was diagnosed with an unspecified migraine disorder and given Elavil.

Elavil pretty effectively dealt with my insomnia which dealt with the migraines. It didn’t touch the pain on my face or on my temples. I still couldn’t wear glasses.

An optician recommended that I try a pair of ultralight titanium frames. They cost about $900. I was desperate and convinced my mother to buy them for me. They weighed nothing. They still hurt my face. After what feels like dozens of adjustments (you think I’m exaggerating but I’m not, that optician is a saint) I finally got them to a place where I could tolerate them for a few hours at a time. I basically only wore them when I left the house. I took them off the second I got home.

At that point, I hadn’t worn glasses in about three years.

Whenever my prescription changed, I would just have the lenses replaced on that pair with a promise from the optician that nothing about the frame would be moved during the process of changing the lenses. Alas, eventually opticians refused to change the lenses claiming that the frames were so old that they didn’t have the structural integrity to undergo another set of lenses. I could no longer forego glasses, so I just had to try and make do.

This generally meant smothering my glasses in moleskin, a first-aid product that is soft and fuzzy on one side and sticky on the other. I put that stuff everywhere, on the nose pads, on the arms. It wasn’t pretty but it was the only thing that made glasses tolerable.

I was still trying to figure out why I was in so much pain but doctors had more or less stopped paying attention to me when I complained about it. My glasses still hurt and I still wasn’t wearing them as much as I should but everyone was telling me that my pain was irrational. They’d been telling me that for nearly a decade. I started to believe it. I know people reading this right now think I’m full of shit. I started to believe that I must not be buying the “right” glasses. It turned into anxiety that would see me panic purchase glasses that I couldn’t afford because maybe just maybe these ones would be different. No matter the style, no matter how different from other glasses that I’d tried, they never worked. I was still in pain.

Fast forward to late last year. I got a medical marijuana prescription for pain associated with my cerebral palsy. Suddenly the pain was gone. Not 100%, I knew it was there but it was mostly an irritation. I can ignore an irritation. There are still glasses that I can’t seem to wear. Metal frames with nose pads will irritate my nose too much for full day wear but I can stand them for short periods of time. I have better luck with plastic frames.

Suddenly, because I had figured out how to treat the pain, my doctor started taking it more seriously. I got a referral to a neurologist and three weeks ago tomorrow I was finally diagnosed with Atypical Facial Pain (sometimes referred to as Persistent Idiopathic Facial Pain).

The weird thing is that while I feel vindicated and deep down knew my pain was real. The doubt and gaslighting I experienced in over a decade of pain has had an impact. One of the unfortunate issues with the way Canada handles legal medical marijuana is that patients don’t always have consistent access to certain products. My supplier was out of CBD for months (yes for nonCanadians who might be used to CBD being considered legally separate from marijuana. In Canada, CBD is considered weed and you need a special kind of prescription to get it) and the came back. Yet some part of my brain had somehow convinced itself that maybe I had been making it all up. I’d been pain-free for weeks after all. So, I ended up experiencing a lot of denial when the pain came back even though I didn’t have access to the medication I was using to control it.

This is the price of people not believing your pain. You can’t even look at it objectively anymore. I will likely need to manage this pain for the rest of my life and I’ll probably have periods where I’m still convinced it’s all in my head for at least a long time to come despite the vast difference in quality of life that pain treatment gives me and the fact that I’ll also very likely have periodic reminders of just how real my pain is because I only have intermittent access to medication. CBD is out of stock at my supplier again, so I’m probably in for a reminder soon.

 

 

How to support my work and a not so subtle request that you help me buy drugs. Medical Marijuana isn’t covered by most health insurance providers in Canada and the few that do only do it on a case by case basis so I’m paying out of pocket for necessary pain intervention and this has taken a toll on my already precarious financial situation.

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