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.

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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.

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

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

Why Everyone Thinks that They Care About Disability Rights When They Really Don’t

On Thursday, Rachel Maddow asked “Who campaigns on gutting the American’s with Disabilities Act?” in a segment that included no interviews with disabled people.

She asks the question and seems to understand that the answer is “no, one” but she fails to ask or investigate why no one would ever openly say

“Send me to Washington, I’m going to stick it to disabled people. Send me to Washington and when I take my votes, you’ll see blind people, and people in wheelchairs being hauled out of the gallery in the house and arrested because I’m taking away the most important parts of the most important legislation that has integrated disabled people into mainstream life and American public accommodation”

or have an

“I’m a wheelchair user’s worst enemy caucus”

but still, vote in favour of legislation that will invariably harm disabled people.

Because, to be clear, this question isn’t just about the HR 620 vote that Maddow is addressing in that segment. That’s just the latest example of the say one thing but do the opposite phenomenon that is an all too common aspect of disability-specific legislation and policy in the United Staes and beyond.

This phenomenon was also front and centre in every attempt to repeal the Affordable Care Act.

It is present in the continuing controversy about austerity measures and benefits cuts in the United Kingdom.

It can be found in the fact that Toronto’s Transit Commission is unlikely to meet the goal of making all subway stations accessible by 2025 as the Access for Ontarians with Disabilities Act (AODA) requires.

This is a really common thing. You ask a random sampling of nondisabled people if they support more rights and opportunities for disabled people and the majority if not all will emphatically respond with a “yes”

If you ask them to follow through with the actions needed to make that ideology a practical reality, suddenly they’re either no longer available or they start making excuses.

There are a number of factors at work here, to create this paradoxical reality where disability rights are being clawed back or are under threat and yet most people when asked will passionately claim that they love disabled people and want them to thrive. It would take more space than I’m sure you have attention for to go through all of it (it could fill several books) but I’ll try and go through a few of issues at play. It all boils down to a single idea though.

The bar for what constitutes solidarity for disabled people is so low that simply not actively hating us is considered a radical act. Put another way, people have convinced themselves that simply reacting with the appropriate emotion is considered an act of resistance. As opposed to actually acting to resist systems that oppress disabled people.

Some of this is culturally constructed. One of the big reasons people can say one thing but let the opposite thing happen is because of how we understand poverty.

Western cultures all generally have some kind of understanding that there are portions of the population that are going to require assistance. They may differ on how they think those people should be helped. Should the government be in charge? Should it be nonprofits? Should we leave it to religious institutions?

Ultimately, who’s in charge is irrelevant because inevitably people are fine with the amorphous idea that people who are poor, sick, disabled, or elderly need and deserve assistance. Problems show up as soon as people start to act on those ideas and the need is too great for the resources available. Instead of looking for more resources, people start debating about “who really deserves to be helped”.

That’s where narratives of the lazy poor or benefits cheats come from. Not because those are widespread phenomena but because doubt is useful to people who either don’t know how to help or feel that too much is being asked of them. So they come up with excuses about why the person who needs help isn’t really deserving after all.

Disabled people have long found themselves firmly in the category of people deemed worthy of assistance but they often don’t get it. Consider the “ugly laws”, a set of policies and bylaws often incorrectly assumed to ban disabled people from public spaces outright. They were, in fact, more accurately anti-vagrancy laws. They were often premised on the idea that disabled people were justified in begging. The problem was they were convinced that people were faking disabilities to unfairly gain sympathy.

While that undoubtedly did happen it likely wasn’t as widespread as people thought. The suggestion that, that beggar might be faking his war wound was enough doubt to allow people to not only feel justified but righteous in not giving the poor money. “The ugly law” also allowed for people who were begging to be removed from the streets. Often specifically under the guise of removing the “riff-raff” so that the truly deserving poor would not be disadvantaged.

That dichotomy of the deserving and undeserving poor allows for people to maintain the idea that they want to help poor and disadvantaged people (the deserving poor) while putting up ever more restrictive barriers to getting access to that assistance (the actual poor…excuse me the “deserving” poor).

A lot of social services are delivered with expansive mission statements that do not seem to match the output of those services.

Disabled people, in general, have theoretically maintained “deserving” status throughout the history of social services in the last few centuries. Yet we remain underserved.

The rhetoric never seems to match the output.

Consider how British Prime Minister Theresa May talks about Personal Independence Payments (AKA PIP a financial benefit for disabled people in Britain) in the midst of real concerns over the impact of cuts. These statements were made in the context of there being clear identifiable harms happening as a direct result of government policy.

“If you look at what we’ve been doing on disability benefits, what we have done is look at focusing disability benefit payments on those who are most in need. In fact, we are spending more on disability benefit payments than has been done by any government in the past,” she replied.” (emphasis mine)…

“We have changed the way that disability benefits have been paid and I know there are some issues that people continue to raise about assessments that are made on those payments. But we will continue to be moving to a system that ensures we are supporting those most in need.” (emphasis mine)

In the face of cuts, the official line is still “the people who need it are getting help” the implication is thought that the people who saw their payments cut or lost benefits altogether are no longer in need. So, if they complain they are lazy scroungers.

It doesn’t matter that the restructuring of benefits did not come as a result, a large scale movement of disabled people into work. People were not becoming spontaneously cured. Their needs didn’t change. The only difference is how the government defined them.

People also can’t seem to remember that disabled people deserve access to public spaces the second money comes up. It’s always too expensive to make things accessible. That’s the basic crux of HR 620, the legislation seeking to gut the ADA.

It’s just really unfair that people have to actually make an effort to make their businesses accessible. It’s a step too far. Can’t we all feel really good that the ADA exists? Do we really have to follow it through? Can’t we just bask in the glow of the intentions behind it?

Though as the Toronto Transit example points out even keeping accessibility legislation as is won’t stop people from not following through with its requirements if they can claim it’s too expensive.

I wonder sometimes how much it costs to build steps. To pour the concrete for that one step into a building. How much do stairs cost to go between floors? How much does building the accessibility of nondisabled people cost? Is it more than a ramp? Is it more than the lowered sink and tilted mirror in the bathroom? Did the other sinks and mirrors cost so much more? or is it just that the things that accommodate disabled people in those spaces are always seen as extra?

Disabled people are a cultural paradox. We are both widely considered deserving of rights and dignity but if we are denied them, little is done and excuses are made.

The fact that disabled people are now more likely to demand meaningful inclusion and not simply settle for the subsistence of charity has also challenged the historically paternalistic view of disabled people.

They are supposed to save us. Often from the ravages of our own bodies and minds. We are not supposed to say that we really need saving from exclusion and systems that keep us in poverty.

Unfortunately, people still look to charity as not only the best way to assist disabled. On this front charities are fundamentally failing the people they claim to want to help. Awareness is big business but the bar is unfortunately not set at meaningful understanding of the cultural and economic status of disabled people. They instead far too often ask only for sentiments. In short, they ask for nondisabled people to affirm that they do not hate us.

From the Cerebral Palsy Foundation’s functionally meaningless “Just Say Hi” campaign which basically asks that people prove that they are not afraid of disabled people by saying “hi” to them.

It doesn’t interrogate why people are uncomfortable around disabled people. It doesn’t question whether disabled people want to be said “hi” too just because they’re disabled. It doesn’t consider how this campaign contributes to a toxic culture of voyeurism that strips disabled people of privacy.

Easterseals has recently rolled out its Celebrate, Don’t Separate campaign which is supposedly about changing the way people see disability. The campaign is filled with the voices of disabled people explaining how they want to be seen.

What action then does Easterseals recommend people do?

Do they want you to call your government representatives and demand action on inclusion in the workforce or in education?

No

Do they want you to consider ways that you can make your home/workplace/school more accessible?

No

Do they want you to donate money to create a fund to invest in accessible infrastructure?

No

They want you to take a photo of you hooking your index finger with someone else’s and posting on social media.

I can’t think of a more empty gesture.

We already know that people find it all too easy to express warm and fuzzy sentiments about disabled people. It’s the work of making those sentiments a practical reality that they can’t seem to grasp.

Empty gestures that lack meaningful action only reinforce the idea that conjuring up the right emotion is a radical act. It lets people think that they are either helping or at least not contributing to the problem as long as they can call up a warm and fuzzy feeling at the general concept of inclusion without having to create it. The fact that we don’t live in a world that can live up to the intentions of existing policies and legislation is largely irrelevant.

Hell, we live in a world where those intentions are held up as evidence of success even as they clearly haven’t been lived up too or are being actively undermined.

Any campaign built on recruiting sentiment instead of action needs to be abandoned.

If you claim to care about disabled people and our rights, be prepared to act in defence of them.

Here are some things that you can actually do.

Call politicians about bad disability-related legislation.

Attend protests in support of disability issues. Don’t just gasp and clutch your pearls when ADAPT activists are being arrested and dragged out of their wheelchairs. If they get arrested, you should step into the protest in their place.

Donate to charities and organizations that are run by and for disabled people

Support disabled content creators. Put money in the hands of disabled people.

Do not hide behind a generic feeling of fellowship and good intentions. Make sure those intentions are matched by measurable outcomes.

 

 

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.

Give Disabled People Money: A Painfully Uncomprehensive List of Disabled Activists and Creators who You can Support Right Now

In a world where the politics and practices of large scale disability charities are either questionable or outright problematic, it is important to look at ways to help disabled people without falling into the paternalistic saviour narratives. There are of course organizations run by disabled people for disabled people such as.

Rooted in Rights

Rooted in Rights is a cross-disability organization committed to telling authentic stories and fighting for disability rights.

Autistic Self-Advocacy Network (ASAN)

ASAN is an organization run by and for autistic people.

Disability Visibility Project (DVP)

Run by the incomparable Alice Wong, DVP is committed to sharing and promoting disability media and culture.

I absolutely would not have the audience that I do without Alice, so please go give her all your money.

ADAPT

ADAPT is a direct action organization focusing on legislation and policy, whether it is lying in front of buses to demand that transit be made accessible or occupying Mitch McConnell’s office to protest attempts to repeal the Affordable Care Act.

 

You can, however, help disabled people more directly on an individual level. Disabled people disproportionately live in poverty and I do not know a single disabled creator who makes a living off of their work and they all absolutely deserve to do so. So I am going to leave a list of disabled creators whose work you can support in a myriad of ways. Consume their content. Share their content. Buy their products. Give them money.

Without further ado, disabled people you can support right now: a list

Kim Sauder (yours truly)

Hi, you’re here reading my blog right now. Supporting me financially means that I can continue to blog. It also on a personal level means that I can eat food, pay my rent, afford tuition (so I can continue to live up to my role as a crippled scholar).

There are a number of ways to support me.

Give to my patreon. I really want to be able to make this blog more accessible. If I make my minimum patreon goal I will absolutely invest in the blog upgrades necessary to make that possible. If I get more than my monthly minimum goal, I can also buy food…and maybe bring your content from other awesome people (and pay them for it).

Become a Patron!

You can also make a one-time donation to my Ko-fi account

Buy Me a Coffee at ko-fi.com

I am also currently fundraising to attend the International Disability Law School in Ireland, so you can support that goal specifically on GoFundMe until May 2018

Click Here to Donate

 

Dominick Evans

Dominick is a disabled filmmaker and all around bad ass activist. Like Alice, I don’t think I would be where I am now without Dominick. Participating in his #FilmDis Twitter chats were my first introduction to online disability communities and activism. You can help him finish funding his film on here or support him on patreon.

Mike Mort

wheeling black Panther

Image Description: A take on the International Symbol of Access with the standard white stick figure removed from the wheelchair and replaced with the superhero Black Panther

Mike is a graphic designer. He is best known for reimagining superheroes as disabled. You can buy the design above and others here.

Amythest Schaber

Amythest Schaber is an artist and Youtuber. You can watch their video on YouTube or buy their designs here. They also have a Patreon. Amythest is a good example of why it is important to buy disability content from disabled creators as many of their designs have been stolen and used elsewhere without payment or attribution.

Annie Elainey

Annie Elainey is a Youtuber who makes awesome disability-related content. Watch her videos and buy her iconic The Future Is Accessible T-shirts (I have 2). Annie also has a patreon.

 

2017-08-23 15.13.16 HDR

Image Description: photo of me (a fat woman with hemiplegic cerebral palsy and short hair) wearing a blue T-shirt that reads “The Future is accessible”

 

Vilissa Thomson

Vilissa has a Master of Social Work and blogs about issues relating to disability, particularly as they intersect with race. You can donate to her directly or hire her as a consultant and speaker.

Alex Haagaard

colourful crippledscholar logo

Image Description: An open book with colourfully flipping pages. Colourful curly cues come out of the pages leading to images of a walking stick, a service dog, a pill bottle, a smartphone, a white cane, a pair of hands signing, a wheelchair, glasses, a fidget spinner, and forearm crutches. Underneath it says crippledscholar.

Alex designed this lovely logo for my blog and is available for hire. You can follow their design work on Instagram. You can also donate to their GoFundMe.

 

Sara Luterman

Sara is the editor of NOS magazine which is focused on uplifting neurodiverse voices. You can donate to NOS Magazine via the link above or support Sara on Patreon here.

 

Who are your favourite disabled creators and how can they be supported? Let me know in the comments.

 

 

 

Please Help Me Go to the International Disability Law Summer School

aircraft-jet-landing-cloud-46148

Image Description: A plane is flying in a cloudy blue sky. The landing gear is lowered as though the plane is landing

There are unfortunately very few opportunities for Disability Studies students to study abroad. In some ways, this is fortunate because I cannot begin to afford to travel and yet it is still unfortunate.

Disability Studies exists to study and question how disabled people fit into the world. Assuming that is, that you’re ok with being limited to one university campus or even as in the case of my university one classroom. That’s right all disability studies classes—except for the classes of one professor who refuses to use the room as a matter of principle—are taught in a single room that has been deemed “accessible” (this is easily debatable).

It is difficult to engage with disability studies even in the broader confines of one of the biggest universities in Canada much less meet with like-minded people around the world.

This is one of the reasons that social media is so important because it is one of the few ways that disability scholars and activists have to network and keep tabs on what people are doing around the world.

That is why opportunities like the International Disability Law Summer School are so important. It is a genuine opportunity to learn things that may not be available in individual Disability Studies programs. It is also a rare opportunity to network with people in the field in person.

I would very much like to attend this year’s school but I can’t afford it. I have come to the conservative estimate that the trip will cost $5500 and I have set up a GoFundMe to try and raise the money for me to go.

Click Here to Donate

I hope that you will be able to help me out. If everyone who visits my blog this month donated a dollar, I would have to raise my goal amount to account for the GoFundMe per donation fees. So hopefully fewer people will be more generous. Please donate if you can.

If I don’t make my goal, funds will be redirected to pay for my current studies here in Canada as will any funds I may receive that exceed the amount I need to attend the summer school.

Thank you in advance for your support.

As always you can also support my continued blogging by becoming a patron on Patreon

Become a Patron!

Or make a one time donation through Ko-fi

Buy Me a Coffee at ko-fi.com

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The Shape of Water is a Toxic Romantic Fantasy: The Issues With this Disability Romance Narrative

 

ShapeWater-tank

Image Description: A still from The Shape of Water. Sally Hawkin as Elisa, a dark haired woman shown in profile has her hands on the glass of a large tank. On the other side a humanoid but scaly creature with webbed hands gazes back at her.

 

This post contains spoilers

 

I know I’m late in presenting an opinion on Guillermo Del Toro’s The Shape of Water but considering that the Oscar nominations were just released and Del Toro’s film has garnered a number of nominations including Best Actress for Sally Hawkins, I may be late but I’m certainly not too late.

The Shape of Water is basically a dark and flipped to take on a combination of Disney’s and Hans Christian Andersen’s original The Little Mermaid. Instead of a sea creature wanting to walk among humans, a human wants to be with a sea creature. Elisa, played by Hawkins is a woman who has no voice. She didn’t sell it to a sea witch but rather experienced an undefined violent injury to her vocal cords as an infant.

Unlike her Disney counterpart Ariel, Elisa doesn’t want to be separated from humanity around her but is instead ostracized because of her disability. In fact, at the end of the film, she seems prepared to give up her monstrous lover in order to stay with people. It is only because she is mortally wounded and no longer given a choice that she ends up in the water with her beloved creature.

Her character—like all of the characters in the film—is one-dimensional. She is a mishmash of disability stereotypes. She is a social outsider who is largely perceived to be “other”. She clearly longs for more inclusion but is unable to get it. She experiences only simplistic emotions that seem more appropriate to a toddler than they do to a grown woman who has not one but two gratuitous masturbation scenes (so you can throw in a creepy sexualization of innocence as well).

The lack of emotional range for the character is really down to the performance given by Sally Hawkins. I have seen many people applaud the silence of her performance but silence isn’t a performance, it is a narrative choice. A performance would be everything that the character does outside of that silence. Which in this case is predominantly very simplistic facial expressions and a very little amount of sign language. What that amounts to is that Elisa’s character has less to do with her character or the performance given by Hawkins than it does with the storytelling around it.

Everything about the narrative shows how alone Elisa is. She lives alone in a poorly furnished apartment. Her neighbour and only nonwork-related friend largely ignores her if it doesn’t suit him. She is an orphan who experienced violence. She is so ignored at work that she can take her lunch breaks with her employer’s top-secret project and have it remain largely unnoticed even by her closest coworker.

Her only driving motivation is to be wanted. To be Included. She ultimately gets one and not the other which is what makes this film a nightmare.

Del Toro masterfully sets up a narrative where Elisa’s ostracization and treatment are clearly the fault of people around her. The film directly acknowledges that her oppression is socially constructed and then it lets the world get away with it.

Even at the end Elisa never intends to run away with her lover. She saves him from vivisection and lets him camp out in her bathroom but the relationship has an expiration date. The day he can be safely released back into the water.

Even as they stand on the edge of the canal and the creature asks her to go with him, she refuses. She still wants the human world. She still thinks her place is there. She again loses her right to choose though, after her boss, the film’s villain shoots her. She is either dying or dead when she is lifted and carried into the water by her lover. The lover, she intended to let go. He either heals or resurrects her in the final moments of the film enabling her to breathe underwater so that they can spend their lives together. Away from the world that rejected them both. This is supposed to be romantic.

Even if you ignore the rejection of Elisa’s agency when she said that she intended to stay on land. The film acknowledges that the barriers she experienced were socially constructed and then concluded with “It’s better to just leave”. Leave and live what is implied to be a solitary existence where she has only her lover for company.

It is interesting how closely this conclusion mirrors my own youthful fantasies about romantic relationships (except that I kept my imaginary lovers human). I often felt like any relationship I might find would be a once in a lifetime opportunity and that we would inevitably end up living a secluded life together because of the discrimination that I faced. Except in the real world, that kind of relationship is a recipe for abuse and I’m glad I grew out of it.

The Shape of Water could so easily be a different kind of horror film about the dangers of social denial of the sexuality of disabled people and how that makes them easy targets for abusers. Instead, it does exactly that story but ignores the inherent dangers of becoming infatuated with the first man who pays you any attention because the world has spent decades telling you that you are undesirable. It takes what should be a cautionary tale and turns it into a bittersweet romance. In so doing it absolves the bigoted world that rejected Elisa and ends on the message that if the world doesn’t work for you, even if it’s clearly the result of discrimination that the best option is to leave.

At least in both versions of The Little Mermaid, the mermaid was clearly trying to move from one society to another. Elisa gives that up for a completely uncertain future. As Elsa Sjunneson-Henry points out in the title of her own review of the film “I want to be where the people are”.

Disabled people don’t need more pseudo-romantic movies that romanticize our otherness, that connect us so clearly to monsters. That say if society doesn’t accept you that you might as well embrace the monster that they see in you and join literal monsters in a life away from humanity.

 

 

 

 

 

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Let’s Contextualize the Suspension of that University of Guelph Prof who Bullied a Disabled Student

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Image Description: A monochrome image of a graduation cap

Yesterday, a story came out about a University of Guelph professor who had openly mocked a disabled student during lecture. This resulted in the targeted student leaving the room along with his aide. Many of his classmates followed suit. The professor in question has been placed on leave and the incident is being applauded as a victory for justice.

While the actions of the professor were abhorrent and he deserves to have been suspended, there is a lot of context that this story is leaving out in favour of celebrating the nondisabled students who walked out in solidarity with their classmate.

I wrote a twitter thread on this yesterday but based on some of the responses I got from it, I think that a full blog post is necessary.

This is only a news story because of the solidarity of nondisabled students. I wish nondisabled people understood how much power they have to improve or limit the lives of disabled people.

The story itself treats the abused student as a prop. They are not named and are never interviewed. The entire narrative is framed around the recollections of nondisabled people.

The sentiments expressed are generally positive and supportive but the issue is also clearly framed as a one off. One bad professor. The students imply they will stand against any other injustice. But will you?

More importantly, do you? The thing that makes the Guelph story unique isn’t that it happened. The more shocking thing is that it happened in public. Disabled students experience discrimination from professors regularly. I am willing to bet that professors refuse to accommodate disabled students daily. It just happens behind closed doors and they tend to use less inflammatory language.

Some professors write op-eds and publish academic articles advocating exactly that. Where were the mass walkouts in solidarity then?

Solidarity in the Guelph incident is positive but it’s important to put it in context. The stakes for protesting students were low. The professor was a sub. Students were risking walking out on a single lecture not the entire course for the semester. They were not challenging the actual course director who has control over their grades.

Would they have walked out if it had been the course director?

Would they have been willing to potentially sacrifice an entire credit?

As responses to my twitter thread have shown me, the professor in question is not popular. I’ve received several responses from his former pupils that are all along the lines of,

“Oh, I had him as a prof and he’s a massive douche”

That reinforces the idea that people who see this story interpret it as an isolated incident perpetrated by someone widely considered detestable. There is no consideration of whether his behaviour fits into a system of discrimination against disabled people in academia.

It is more comfortable to see his behaviour as wholly aberrant instead of understanding that the only thing surprising about it is that he did it so publicly. There are many more faculty members slowly tearing down disabled students in the safety of their offices.

Where is the protest over that?

The Guelph incident is tragic not just for the abuse that one student suffered but because the way it has been framed in the media allows people to believe such incidents are rare and that they are inevitably met with swift and effective push back when they do.

 

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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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