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.

 

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

cap-2029798_640

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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The Ineffectiveness of Sentiment Masquerading as Disability Solidarity

UN quote

Image description: Abridged quote from 2016 UN Report. It reads “The State party have met the threshold of grave or systemic violations of the rights of persons with disabilities”

We live in a world that is fundamentally inaccessible to disabled people. Physical access to public space is still a significant barrier. Social policies also make it difficult for disabled people to participate in society. Yet, these issues rarely make the news unless they are perceived as particularly callous.

Consider when Calgary Airport removed wheelchair accessible spaces to put in reserved space for Lexus Vehicles or the proposed dementia tax in the UK. These issues cause outcry and change to those specific incidences. The rage that these situations is inspired by the idea that these sorts of things shouldn’t and generally don’t happen anymore.

It is a long-standing sentimental response to overly callous behaviour. Consider the 1993 Canadian federal election where the Progressive Conservatives were faced with fury over an attack ad that was perceived to belittle then Liberal Leader Jean Chretien based on his facial paralysis as a result of Bell’s Palsy.

Video Description: Audio attacks Liberal policies while still close-up images of Jean Chretien’s face are shown.

This was met with a large amount of backlash. Some even credit it with the Progressive Conservatives (PC) losing the election. Though that is impossible to prove and unlikely considering the PC’s were already low in the polls before the ad ever aired.

Quick rage at easily identifiable wrongs against disabled people is common but it rarely leads to meaningful action or even comes from an awareness of the lived reality of disability.

This is probably best exemplified by the continued referencing and indignance around Donald Trump’s 2016 mockery of Serge Kovaleski. Though he is tellingly most frequently referred to not by his name but simply as “the disabled reporter”.

Outrage over that incident both obscures the racism and Islamophobia that inspired Trump’s actions and essentially reduced solidarity to disabled people to the ability to identify and condemn specific incidences of bullying or discrimination against specific individuals.

This ability for callous treatment of disabled people to inspire the ire of nondisabled people extends beyond election campaigns. Consider this tweet I can across yesterday.

It includes an image of text from a Dear Prudie segment from Salon which reads,

Q. Daughter’s friend being in wedding: My 27-year-old daughter and her best friend, Katie, have been best friends since they were 4. Katie practically grew up in our house and is like a daughter to me. My daughter recently got engaged to her fiancé and announced that Katie would be the maid of honor (Katie’s boyfriend is also a good friend of my future son-in-law). The problem is that Katie walks with a pretty severe limp due to a birth defect (not an underlying medical issue). She has no problem wearing high heels and has already been fitted for the dress, but I still think it will look unsightly if she’s in the wedding procession limping ahead of my daughter. I mentioned this to my daughter and suggested that maybe Katie could take video or hand out programs (while sitting) so she doesn’t ruin the aesthetic aspect of the wedding. My daughter is no longer speaking to me (we were never that close), but this is her big wedding and I want it to be perfect. All of the other bridesmaids will look gorgeous walking down the aisle with my daughter. Is it wrong to have her friend sit out?

Prudence quickly takes the questioner to task for her easily identifiable bigotry.

The key here is that the bigotry is overt and easily identifiable with a clear individual victim.

This is I suspect largely why incidences like this illicit public censure. It is less to do with an understanding of the social realities of disability as a disabled person who responded to the tweet points out,

The issue for nondisabled people is the public display of horrific behaviour, not a real desire to understand how widespread the issue really is. As long as the harm happens out of sight. People don’t seem to care. It is a purely performative and self-serving kind of solidarity. The response is simply condemnation without action or even a real awareness of the extent of the issue.

Horror at these incidences rarely results in meaningful action. Consider when ADAPT activists were protesting the proposed ACA repeal. People stared at the news in horror as images and videos of activists being dragged from their wheelchairs by police. The response predominantly stayed at horror and condemnation. Sure more people than ADAPT were actively protesting the ACA repeal but in the face of horror and condemnation of that specific treatment of disabled activists. The response stayed at horror and condemnation. It did not spark a large solidarity protest at Mitch McConnell’s office. People stayed home and clutched their pearls at the images on their computer and television screens.

Disability solidarity far too often stops at sentiment and condemnation and I can only credit this to the continued widespread ignorance of the realities of being disabled and continued systemic ableism.

How can people express shock at isolated incidences of the mistreatment of disabled people but not me moved to protest the systemic inequality disabled people experience.

In the UK for the second time in two years, the UN has condemned grievous state sanctioned human rights abuses against disabled citizens. That situation did not come from isolated incidences of cruelty performed by a single easily identifiable villain. That situation was created and maintained by the systemic willingness of millions of people across political lines to disregard the humanity of disabled people.

But sure Donald Trump being an asshole to a disabled guy that one time was bad.

In Canada, disabled people experience unequal access to healthcare and are screened out of eligibility to immigrate to the country.

But sure pat yourselves on the back for the 1993 Liberal election victory by misguidingly associating it with a nationwide moment of solidarity against bigotry.

I have intentionally made this post about international realities to really highlight how much farther we have to go than the mere condemnation of easily identifiable moments of bigotry.

Disabled people need more than sentimentality. We need action. We need change. We need people to question their own prejudices and how they might be contributing to the systems that oppress us and keep us from fully participating in the world we live in.

People need to get over the idea that society has moved beyond cruelty to disabled people. It hasn’t and the misguided belief that it has actively maintains systems of oppression.

 

 

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