When Social Justice Media “Allies” Get it Wrong

On Jan. 6th Seriously.tv–a social justice focused video producer–put out a new instalment of their series “Shutting Down the Bullshit…”. The series is characterised by host Dylan Marron confronting either a noted activist or a group of people who are linked by a shared experience (race, religion, sexual assault) with stereotypes that they encounter as a result of their work or lived experience. The videos give those being interviewed an opportunity to respond directly to those harmful stereotypes.

The Jan. 6th instalment was Shutting Down the Bullshit about Autism. It, unfortunately, ends up reinforcing more stereotypes than it debunks and displays some very problematic advocacy on behalf of a grout that Marron and presumable the rest of the Seriously.tv crew do not belong to.

The “interviewee” is Avery. I put “interviewee” in quotes intentionally because, for the most part, he isn’t really the person responding to the stereotypes that Marron brings. His answers often give little information that is often problematic.

Avery brings up Autism functioning labels which are a contentious and problematic way to categorise Autistic people. People who are labelled high functioning are generally seen as being more “normal” and thus more human. People who are labelled low functioning as a consequence are seen as less human (for more thoughts on functioing labels go here).

Avery seems not only unaware of this controversy but also buys into it. Marron prompts him to divulge his functioning level to which he proudly responds “very high”.

This reinforces a dehumanizing hierarchy that posits that the more “normal” you seem the better you are. It is a harmful hierarchical structure that extends beyond the Autistic population to disabled people generally and serves primarily the place varying disabled people onto a spectrum of social value (more on that here). Now that is some bullshit that needs to be shut down.

Ultimately, though, the interview isn’t really with Avery. The interview is really with his father which brings up a host of other problems.

Much activism has been done to try and centre Autism narratives from within the Autistic community. Much of this activism comes as a direct push back against the prevalence of parent narratives. This is an issue that extends beyond the Autistic community to the wider disabled community. Consider the pushback against the website the Mighty which centres a lot of parent narratives (see here, here, and here).

Avery is really little more than prop to give a visual for his father’s input. This isn’t even thinly veiled. Avery is clearly unable to answer some of the questions, so they are clearly designed for someone else. Marron asks Avery about the film Rain Man. A film Avery hasn’t even seen so he is unable to even understand the stereotype being referenced. Not that his father does much better when the video cuts to him, he says,

“Rain Man is a lovely movie about a man’s relationship with his brother. It is not a movie about Autism”

This answer is dismissive bullshit.

Rain Man epitomises a harmful and prevalent media stereotype about Autism. It is a caricature that utilises stereotypes about  Autism and savantism that are seen in many films that include Autistic characters. It features a character that is often parodied and involves the use of cripping up. The discriminatory practice of a nondisabled actor playing a disabled character. It is a film that has very much informed the cultural consciousness of what it means to be Autistic.

The lack of mentioning of the Autistic savant stereotype is even more telling when the video decides to highlight Avery’s “special skill” he has perfect pitch. His demonstration of this skill along with a lot of video of him talking is really just a backdrop for his father’s voice over.

The focus on Avery’s father is not just problematic because he’s taking up space that should really be filled by an Autistic voice. The video basically applauds him by including an old myth that Autism was caused by bad parenting. This moment seems more like a moment to say “oh look at this nice parent of a disabled child” than actually challenging a stereotype that needs debunking.

While the “Autism is caused by bad parenting” myth did exist it is hardly prevalent now. It is far more common for people to believe that Autism is caused by vaccines. Which is some bullshit that has already been heavily debunked but it still far to widely believed. It is a belief that actively stigmatises Autistic people and threatens people’s health and lives.

Patting Avery’s father on the back for not being a shitty parent is also problematic because it obscures just how much abuse parents of disabled children are forgiven for.

Consider the conciliatory tone the media took with Kelli Stapleton who tried to kill her Autistic daughter Isabelle.

A video that is ostensibly about challenging Autism stereotypes is no place for “yay, parents of disabled kids”. Regardless of how good of a parent Avery’s father. His experience and old stereotypes focusing on parents should not be the focus because it feeds into a dangerous “saintly parent” stereotype which is some other bullshit that needs shutting down.

This visual silencing of an Autistic person in favour of a neurotypical voice is actually hard to watch. It is also not in keeping with the other videos in the series which clearly centre activists speaking for themselves.

In other videos in the series where a single individual is interviewed, they are always an activist (with the exception of a less serious instalment where Marron speaks to a toddler). When multiple voices aren’t being heard, the individual is someone who it is easy enough to look up and fact check. It is possible to see where they fit into the experience they are speaking to and find out any criticisms of them and their opinions.

This is not possible with Avery or his father for whom we are not even given a last name.

Marron sought to defend his choice to use Avery’s dad in the video with a statement on facebook that he later shared on Twitter.

dylan-marron-excuses

Image description: A screenshot of a Facebook comment by Dylan Marron which reads “Hey all, I’d like to publicly address my decision to open up the conversation to include Avery’s dad Joey. Thank you to those who have asked about it (Thanks Jaden!). I work hard to make sure that ‘Shutting Down Bullsh*t’ gives a platform to those directly affected by the bullsh*t so they can shut it down themselves. This topic, however, provided a unique challenge as we were dispelling myths about a condition that inherently inhibits communication – not intelligence or capability, but communication. Avery is a friend of mine and I personally know how brilliant he is, but I also know that there were some social barriers that would prevent him from expressing the detail that he wants to convey. Joey, his dad, is also a friend of mine. We talked about this interview for a while and carefully discussed what would be best to make sure Avery was speaking for himself, but also how to make this video accessible to those who know nothing about autism. I figured that rather than relying on stats and graphics to complement Avery’s responses, I would also give that platform to someone who not only knows a great deal about autism, but someone who deeply loves a person with autism and could help illuminate more about this person to a neurotypical audience. The way I see it is that Joey wasn’t speaking for Avery, but rather was complementing him. Shutting Down Bullsh*t takes huge, gigantic, and complex topics and squeezes them in to a three minute video. None of my guests can speak for *all* people affected by the bullsh*t they are shutting down, but they can present a reflection of what *some* folks in that community *might* be feeling. Since I wasn’t able to interview all folks on the autism spectrum, this video is about autism through Avery’s eyes. And to honor that I thought the best thing to do would be to include the voice of someone who loves him deeply and has spent his entire fatherhood ensuring that Avery speaks for himself as much as possible.”

This defence is itself full of problematic Autism stereotypes that Marron is using to defend himself. Even though the video itself does (through Avery’s dad) mention the diversity of Autistic people, Marron says

“I work hard to make sure that ‘Shutting Down Bullsh*t’ gives a platform to those directly affected by the bullsh*t so they can shut it down themselves. This topic, however, provided a unique challenge as we were dispelling myths about a condition that inherently inhibits communication”

So much for diversity of the Autistic experience. Apparently, we are all incapable of speaking not only about our own experiences but responding to the stereotypes and stigma we experience. I must assume my entire post is gibberish then. You probably haven’t even read this far it must be such an incomprehensible mess.

Basically, the problem isn’t that Autistic people need to have neurotypical translators or spokespeople but that Marron chose the wrong interview subject.

Avery is clearly not knowledgeable about major stereotypes or issues within the Autistic community. How is he supposed to respond to things with which he is unfamiliar? It is an unfamiliarity that his father largely shares. He is not an appropriate replacement advocate.

The video format is also inaccessible to Avery. It is very adversarial and there was not attempt made to modify the format to make it easier for him. This is unsurprising as the video is so clearly geared towards speaking to his father and not him.

There are absolutely Autistic people who can and do regularly shut down bullshit ableist stereotypes. (like Lydia X.Z. Brown as just one example). There are entire organisations set up to promote Autism self-advocacy. (see here and here). It is more than possible to find Autistic people who don’t need an interpreter. It is possible to find Autistic people who can be researched so that like the other people featured in this video series, viewers can learn more and see how they fit into a larger activist framework.

Marron basically rejects that possibility. He also uses the “well not everyone is going to agree” cop out.

“None of my guests can speak for *all* people affected by the bullsh*t they are shutting down, but they can present a reflection of what *some* folks in that community *might* be feeling. Since I wasn’t able to interview all folks on the autism spectrum, this video is about autism through Avery’s eyes. And to honor that I thought the best thing to do would be to include the voice of someone who loves him deeply and has spent his entire fatherhood ensuring that Avery speaks for himself as much as possible.”

While of course, no one in this video series speaks for everyone in their movement at least it is usually possible to situate them within it. Marron wants it both ways, to argue that making a video about Autism stereotypes featuring an Autistic person is inherently difficult (because he generalises that Autistic people have difficulty communicating) and then defend his choice of subject as just a particular point of view. A point of view that by featuring in a video, he is supporting.

By framing it this way Marron puts the Autistic community into a box that we don’t fit into. By choosing to interview someone who has no clear public presence it is impossible to situate him in a wider discourse on Autism and advocacy and give a very singular view of Autism that doesn’t centre Autistic people and spews more bullshit than it shuts down.

I know I’m Autistic but hopefully, I communicated that effectively.

 

Update:

Seriously.tv and Dylan Marron have released a new Shutting Down the Bullshit about Autism video. This one uses only Autistic people and includes multiple voices.

Marron also directly responded to the criticism from the Autistic community in a tweet and on Facebook.

A screen-readable version of the text in the tweet images can be found at the bottom of this post.

It’s great to see a more accurate Autistic people shutting down the bullshit for themselves.

The text in Marron’s response reads

Being called out publicly when you think you’re already “woke” sucks. But it helps, too.

In a recent episode of ‘Shutting Down Bullsh*t’ I sat down with my friend Avery to dispel myths about autism. I also included an interview with his father to help illuminate more about autism from the parent’s perspective. I had no idea that allistic (non-autistic) parents speaking over their children is a harmful trope in the representation of autism. I should have taken the time to know that. That’s on me.

While many in the autism community reached out with thanks for beginning to tackle the issue on my show, a great number also expressed frustration with the video – even deep anger. My gut response was to say “No, this can’t be! I’m woke! I speak up against ableism!” But as the messages continued to come in, I realized that I had presented the autism community incompletely at best and, at worst, I had fallen into a pattern of silencing that folks on the spectrum are far too familiar with.

This was particularly tough for me to come to terms with as someone who has been so aware of the silencing that has gone on in my own communities; the centering of cis white masc-presenting men in LGBT representation, the favoring of light skin and Eurocentric features in Latinx culture… the list, sadly, goes on.

The messages pointing out the shortcomings in my video – especially from longtime fans – hurt to read. But ultimately it was for the better. And I’m thankful to those who took the time to explain to me why the episode missed the mark.

Through this all, I’m understanding that “wokeness” is in fact a process, and not a photo-friendly finish line. I still have much more to learn but I’m listening.

To all of us who identify as “woke”, may we not get too proud of our awareness. May we take a deep breath when we’re called out by the communities we’re seeking to serve, and offer a helping hand when we see others “miss the mark.” And finally: let’s accept that we will inevitably Get It Wrong sometimes. What matters is how we evolve after that.

Let’s keep making and let’s keep listening. We can’t afford not to.

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Mentioning Disability is not an Invitation for Commentary or an Inquisition

I think one of the clearest examples that I experience regularly that disability is not an accepted experience is that I can’t casually reference the experience of being disabled without being met with either pity or inappropriate questions. Sometimes it is both.

For me disability is a huge part of how I experience the world. It impacts how I do every day things. If it is relevant I should be able to reference it in the same way a nondisabled person talks about their day.

When I reference my disability or how it impacted an activity (like referencing how I had to do something differently than the norm). I am not looking for pity. But I all too often get it.

Or in a situation where I am airing a grievance based on discrimination, where empathy (though I usually get pity) is appropriate, it is misplaced. People are sorry that I am disabled not that I experienced discrimination or prejudice.

I have written about how nondisabled people often treat disabled people like public spectacles before. Here, I’m going to address how casual acquaintances try to legitimize inappropriate questions about disability.

This isn’t about those people who accost disabled people on the street to ask “what’s wrong with you?”

Rather this is about those people who you are conversing with casually who take the remotest reference to disability to ask “what’s wrong with you?” even when that question is not a natural progression of the disability reference.

These encounters often involve social coercion on the part of the questioner to get you to answer.

The scenario might involve a peer at work or a fellow guest at a party. They are people who can have genuine reasons to speak to you. They will also use the circumstance of being at work or surrounded by other people to force compliance because failure to comply could have consequences.

For example, you are attending a bridal shower for a close friend but it is being hosted by that friend’s future in-laws so the only person you really know is the bride. Everyone else is either a future in-law or one of their close family friends. As often occurs in these situations people ask what you do.

For me this brings disability up basically immediately because I’m a Disability Studies student. It’s a miracle is people don’t immediately move a conversation about what I study to what I am. Usually, telling someone you are a student elicits questions about the program and what you are planning on doing after graduation.

Not so if you are both disabled and a student of disabilities. Somehow, people see to think that asking about my medical history is a perfectly natural progression from me saying that I study disability. It is always quite clear in these conversations that people aren’t just ascertaining whether I have a personal stake in my field. That could be more respectfully determined by asking why I chose disability studies.

A question like that also would allow me to determine what information I am comfortable sharing. Demanding someone’s medical information is about entitlement and voyeurism. Waiting for a disabled person to make even the vaguest reference to disability first does not make it more acceptable.

Making that demand in front of other people is just coercive. Particularly if refusing will put you in a awkward position. Either with the questioner or in keeping with the bridal shower scenario with the bride.

I have found that simply telling people that you don’t want to share that information is rarely received gracefully when the request originated as a demand.

People tend to realize that a refusal is also a message that the question was inappropriate so they feel the need to justify their right to ask it and shame you for noncompliance (remember this is not a private conversation but one that is happening in earshot of other people). So they ask follow-up questions.

You’re doing a PhD in disability studies, shouldn’t you want to educate people about disability?

The answer I wish I could give: Yes, and an integral part of teaching about and advocating for disabled people is making clear boundaries. It does not benefit disabled people to reinforce the idea that our lives and bodies are available for public consumption.

Additionally, as you point out I am doing a PhD in disability studies which means that in addition to my years of experience as a disabled person, I have spent years and tens of thousands of dollars becoming this qualified. University professors don’t work for free so why should I? If you would like to agree to an hourly rate, I’d be happy to share my extensive knowledge with you. Like any work arrangement though I have the right to have my medical privacy respected and I will not be sharing any personal information unless I choose to do so.

I am just trying to learn, why won’t you educate me? Don’t you want people to understand?

The answer I wish I could give: Setting boundaries is a lesson in respect. If you really wanted to learn, you would accept that lesson rather than expecting me to give you personal information which in the grand scheme of things would tell you nothing about the experience of being disabled. It really only serves to parrot information that can be found in a medical textbook or on WebMD.

 

Ultimately as much as I want to, I don’t say those things. More often than not I just give them the information that they want. This invariably leaves me feeling horrible. The consequences for noncompliance however are greater. In the bridal shower scenario it would put my friend in the awkward position of either defending me or defending a future family member or friend. Either alienating me from them or them from family.

These more public confrontations risk more than angering a single person but can have wider consequences from witnesses who are often just as curious as the original questioner. It is usually easier and often safer to comply in the short term and if the questioner is someone that you are likely to have repeated contact with (like a coworker) consider taking action to change the environment in the long term.

I wish these interactions didn’t happen at all. I wish people’s express desire to learn was genuine and not a convenient excuse to justify inappropriate behaviour. So in case you do genuinely want to learn about disability and don’t want to be an asshole in the process here are a few tips.

If you are able, make an effort to educate yourself on your own time. Read blogs by disabled people. Read academic disability literature (some disability studies journals like Disability Studies Quarterly are public access and can be read for free by anyone).

If you are talking to a disabled person, don’t take any vague reference to disability as an invitation to ask probing personal questions. Make sure any follow up questions are directly related to the person’s original reference.

Let the disabled person decide how much they are willing to share and respect their privacy and boundaries.

Recognize that diagnosis information often says very little about the actual lived experience of disability and should not be considered essential to learning about it.

Hey People: Diagnoses are Nouns not Adjectives

As I have written about before, language usage is important when considering how disabled people are viewed and portrayed in society. While I personally prefer to not use person first language, there is one situation where the person should always come first. This is when an actual diagnosis is being discussed. I will demonstrate:

Person with Cerebral Palsy

Person with Down Syndrome

Person with Spina Bifida

and so on.

This should be self evident because both the word person and the diagnosis are nouns, and yet this simple grammatical concept is to complicated for a lot of people. Today, I read this. The headline reads

Kiwi expat family take cerebal palsy son’s discrimination case to UN

What the fuck? Cerebral Palsy is a noun, it is the name of a medical diagnosis. It is not now nor has it ever been an adjective. It can’t even be made into one as Autism can be made into autistic (most autistic people are totally fine with being called autistic but people with other diagnoses that can be made into descriptors like Schizophrenia really hate it and you should all respect that).

This is far from the first time, I have seen this severe lapse in grammar. It often happens to people with Down Syndrom2 for example here and here. Bless Google for knowing this is terrible. while I was searching for the examples, I knew were plentiful, my top results were for articles with correct person first phrases “man with Down Syndrome” or “child with down syndrome”. Even so, it didn’t take much scrolling before I found examples of the offending phrases. To add insult to injury, the second example is a story about a young man with Down’s who was killed by police. Even in death he can’t have his humanity recognized

By trying to turn a noun into an adjective, you are going to both fail and give that noun precedence of place. By putting it before the person you are giving it ownership of that person and denying their humanity and individuality. So in future check your grammar and remember that diagnoses are not descriptions of people but are things that people have.

When Your Disability isn’t Considered in Grade School

I have hemiplegic cerebral palsy and am on the autism spectrum. I wasn’t diagnosed with the latter until I was eighteen and had already graduated high school. In some ways the total lack of knowledge my parents had about cerebral palsy contributed to this lack of diagnosis. My extreme sensitivity to touch and textures was attributed to my CP. My behavioural issues were never linked to my hyper-sensory issues and as such was generally considered to be poorly behaved and to have issues with anger management.

So though my autism absolutely affected my grade school experience, it was not something my parents or teachers were aware of. So for the purposes of this post, I am going to focus mainly on how having CP affected my experience of government mandated education.

Doctors would often describe my cerebral palsy as mild. As far as I can tell that mostly just boils down to the fact that I can walk without the assistance of a cane or walker and can climb a flight of stairs.

Having a disability that has been labeled as mild by the medical establishment also seems to have the added pressure of being considered “not disabled enough” to need accommodations.

When disability and education are discussed it usually follows one of two streams.

Inclusive education: where disabled and nondisabled students are taught together with added supports for the disabled students.

Or Segregation: where disabled students are taught separately from their nondisabled peers.

Each group has their pros and cons and supporters or detractors.

In my case neither of these scenarios was even considered. I was just dropped into a school that had no supports for disabled students. I was one of only two students in the school with a disability. The other was in the English stream whereas I was in French immersion, so while we were aware of the other, we had little contact with one another. We might as well have been attending different schools.

Because my disability wasn’t really considered to be something that required consideration or accommodation, it was never discussed that I might face physical barriers to access the school or activities. As such when I encountered them it never occurred to me that I could or should complain or demand access. I was already being viciously bullied by the other students and was keenly aware that if I mentioned my difficulties, I would just be further separating myself from my classmates.

As I have mentioned in a previous post, one of the issues I encountered at this school was an inability to use the sinks in the school bathroom. This being the early 1990s, those motion sensor taps hadn’t been invented yet so in order to conserve water, the school installed sinks that had rounded knobs that stopped the flow of water as soon as you let go of them. I did not have the hand dexterity or strength to use those taps. It never even occurred to me that I should complain. I thought that the inaccessibility was normal and acceptable.

Other than that in those early years my difficulties came up when scissors or tracing were involved. I could not hold objects still with my weaker limb in order to trace a object or cut it with my dominant hand. I had a lot of particularly sloppy looking art projects as a child.

Gym class was generally awful at both my elementary schools but there was a situation at this first school that was particularly bad and occurred because my disability was never considered and I was expected to just be abe to do everything that my able-bodied peers could.

It happened in grade 5 which was also the year I insisted on transferring schools. The teacher had planned an alternate gym activity. We were going to ski in the playground.

All the other children put on their skis and immediately began racing down the low hill that the school was built on. I on the other hand found that as soon as I put on the skis (which were poorly sized to my small frame) that I was immobile. My left leg was to weak to get me moving. I quickly fell down. I decided the best course of action was to just stay still until the class was over. Unfortunately the teacher noticed my nonparticipation and demanded to know why.

I explained that I wasn’t able to ski but assured her I was fine and didn’t mind. She however concluded that if I couldn’t ski than no one could. Against my pleading, she recalled my classmates told them the fun was over and even pointed to me as the cause.

My peers spent the rest of the day making it very clear that they were less than impressed that I had ruined their fun.

I could have easily just played outdoors without skis, there were several sleds at school as sliding down the hill in Winter was a common recess pass time but instead, I was made the scapegoat for my teacher’s lack of imagination or consideration.

Unfortunately my move to a new school later that year did nothing to improve my situation as I became the only disabled student in the entire school, a trend that continued into high school.

While in high school, I continued to have the expected issues in gym class, where my lack of athletic ability was further highlighted because my school had added a points system to the curriculum. Our performance was publicly displayed on a chart where I was placed dead last by a wide margin. These placements were supposed to be anonymous but were most definitely anything but. The comparison was supposed to incite competition but was really more of a ranking system.

High school gym was where I first really advocated for myself but it did not come from a new found sense of entitlement to access and inclusion. It came from a real fear that if I participated in the outdoor rollerblading class that I would risk real and serious injury. I had to spend the entire class sitting in the change room while I waited for the others to return.

The class that actually had some of the worst access in high school was actually Grade 9 & 10 Science. My social isolation followed me from elementary to high school and when it came time to find a partner in science class, I was frozen out. There was an odd number of students so I was left out. I tried to find a pair who would let me work with them but was repeatedly refused. I asked the teacher to assign me to a pair but he felt that it was not his responsibility. I was thus forced to work alone. I had to try to complete experiments that had been designed for two able-bodied people alone and with only one fully functioning hand.

This continued with me underperforming my experiments until due to my lack of dexterity I burned myself with hydrochloric acid. It would have continued beyond that because my teacher remained unmoved by my obvious disadvantage but finally a pair in the class took pity on me and allowed me to work with them.

My troubles in science class weren’t over though. When we started doing experiments where our findings had to be written in charts that we had to draw by hand with a ruler to our teachers precise specifications. As I have mentioned, I don’t trace well, I can’t hold a ruler steady so my charts looked sloppy and I began to lose marks for presentation even if my findings were correct.

I explained the reason for my difficulties and asked if I could make the charts on the computer in advance and fill in printed sheets by hand. I was refused.

My request in no way threatened the academic integrity of the experiment and would have stopped me losing marks for something other than a wrong answer but I was refused and that refusal did not come with a justification.

I never complained to the school, I don’t even think I mentioned it to my parents at the time. It never occurred to me that that complaining was an option. I didn’t know I had the legal right to accommodation.

The reason I did not know this was because I had been completely isolated from other disabled people and to the adults around me this was seen as a good thing.

In an ableist society, a disabled person’s value is determined by how little effect their presence has on the nondisabled people around them. This creates a hierarchy of disability that is often internalized inside the disability community. The fewer accommodations you need or reject using despite need means you have more value. You are less of a burden.

The more obvious your disability or the more you are seen as part of the larger group of disabled peopled, the less value you have. This is a systemic problem and often leads to disabled people comparing themselves to others and finding the others wanting.

People brag about the accommodations they don’t use. This reinforces the idea that needing and accepting accommodations makes you lesser.

I categorically reject this idea because I have experienced the harm and marginalization that is the result of being denied the help I need to succeed.

My experience has also made me acutely aware of the harm that total isolation from disabled peers can cause. I never knew any better and that ignorance did not mitigate the harm I experienced through lack of physical or social access. Perhaps if I had been aware of other disabled children, I might have known to fight back against those instances of oppression where changes could be made.

In my isolation, I never knew that change was even possible.

Reinterpreting the Social Model of Disability to be More Inclusive and Less Confusing

There are two main models that people use to understand disability and its place in society.

The most common is the medical model of disability (AKA the individual model) which positions disability as a solely individual medical experience and puts emphasis on treatment or cure. The overall goal is to have the person with the disability become non-disabled or its closest approximation.

It can lead to situations where the individuals desires and comforts are ignored or even undermined by the strict demands of the medical and rehabilitation establishments. The attainment of normalcy can come at the expense of quality of life for the disabled person.

In his memoir Standing Tall. Spencer West talks about how he was encouraged to use bulky and uncomfortable prosthesis even though he could get around much more easily using a wheelchair or walking on his hands.

The push for prosthesis also required him to sleep in a painful back brace to get his spine aligned so he could use them properly.

Ultimately, he rejects the use of prosthesis because they don’t actually help him or enrich his life in any way.

Disabled people have been challenging the supremacy of the medical establishment by trying to shift the conversation away from being seen as patients but rather consumers of medical services. This would allow them to get the medical interventions they need without being forced into those they don’t. Unfortunately due to the popularity of the medical model, people are often forced to receive treatments and therapies they don’t want in order to receive services. Treatments are often tied to disability supports or workers compensation. Failure to comply could mean the loss of necessary funding.

Disabled people have therefor created a new way of looking at disability that is self-defined and a direct challenge to the prescriptive power of the medical model.

The Social Model as imagined by its original creators goes like this

Disability is the social oppression experienced by people with impairments and can be alleviated by a social shift which eradicates the social prejudices and physical barriers that keep people with impairments from full social and public inclusion.

Well that was confusing so lets break it down

Disability no longer refers to a medical diagnosis. It is actually a social oppression like racism, homophobia or sexism.

Instead those diagnoses are now referred to as impairments

The solution to all the problems of people with impairments is physical accessibility like ramps, sign language and braille. and for people to stop discriminating. Then everything will be perfect right?

Probably not.

There are two main criticisms of the social model

1.) It denies the individual lived experience. Some people do suffer from more than socially created expressions of bigotry. Not everyone’s problems will be fixed by ramps or braille. Some people live with actual barriers caused by their conditions like chronic pain or fatigue.

2.) It completely ignores intersectionality. The model is often criticized because it was invented by white, male wheelchair users and therefor is tailored to meet their needs while overlooking the needs of people of colour, women, the LGBTQ community and any other marginalized group.

Not everyone’s problems are fixed by a ramp and the language of the model is so academic it has no real meaning in social usage.

It does however have a point social and physical barriers are a major problem that create additional problems for disabled people.

I don’t find any value in the semantic gymnastics the model uses Disability vs. impairment. There are already words to describe the social oppression of disabled people; ableism (my preference) and disableism. Both are already in use and neither can be used to deny the lived experience of a disabled person.

There is a lot of value in the spirit of the social model in that, the inclusion of disabled people in society cannot be attained without dismantling the physical and social barriers that exist to exclude us.

It just needs to be removed from the bastion of academia in which it was created and currently resides so that it can evolve into something that people can understand and apply in their lives.

Why I Don’t Use People First Language: A Brief History of My Relationship with the Language and Disability

I am going to be clear up front, this is NOT a condemnation of person first language or the people that use it. I always endeavor to refer to people respectfully which includes using their preferred labels. This is rather a case of personal opinion and a reflection on how the language of disability is structured and created.

If you live in North America and you have any sort of connection to the disability community, you have probably come into contact with ideas around the politics of language. By this I mean how people want to be referred to if their disability is being referenced. The biggest and most outspoken contingent is for “people first” language (person with a disability, person with autism, etc.). If you look at disability etiquette guides you may even be commanded to use people first language and discouraged from using terms like disabled person.

The latter is my personal preference and oddly enough, were I to be live in the UK, those same language etiquette guides would agree. Interestingly their rationalization is very similar to that of arguments for people first language. The individual is paramount in language framing. An individual should not be defined by their diagnosis. They discourage using terms like “the disabled” or any other language where the person’s humanity is erased.

If the reasons are the same why is the conclusion different?

In North America disability is mostly defined in society through a purely medical perspective. Disability equals a disease that must be stopped and is the source of suffering in the individual. Disability is often permanent and no one wants to have focus on them based around the assumption that they are medical balls of suffering rather than as people. Hence trying to focus on the supremacy of humanity first in rhetoric to distance themselves from the negative connotations of the disabilities they are permanently connected to.

Language in the United Kingdom is based more around defining disability as a social experience where often the most limiting barriers are not people’s diagnoses but rather the fact that society is full of physical and social barriers that limit the disabled person’s ability to participate fully in society. In this way disability is not just a medical diagnosis but an experience of social exclusion. Putting disabled first functions as a description of the experience of social oppression.

That may sound complicated and more than a little convoluted and it is. While in my experience, I am far more limited by socially created physical and social barriers than I am in what I cannot do, I recognize that for others while they share my experience of social exclusion, they do have personal experiences of disability removed from social life that may cause them suffering or hardship.

So there are these two dominant points of view and I find both of them flawed so why go why choose between the two instead of choosing something else like special needs, differently-abled, etc.. Short answer I find both innacurate and condescending (why, is another post entirely).

Long answer, the language around how to describe disability changes often. These changes are usually a reaction to the fact that the existing terminology has become something more than just a medical description and this something more consists of turning medical terms into insults. These insults were and are used to directly insult the people they are supposed to describe.

This is most evident in terms used for people with intellectual disabilities. They used to be classified as idiots, morons, imbeciles and cretins. All those words have actual medical definitions and are not in fact just synonyms for stupid. That is however, how they came to be used. In direct response to this the medical profession decided to find a new word. One that wouldn’t have the negative connotations of insults. The word they chose as a catchall to replace them was retarded.

A word currently so offensive and stigmatizing that there is a movement to have it removed from public usage.

Other disabilities are not immune to to being reduced to insults. Statements like “are you blind?”, “are you deaf?” or”That’s lame” all have connections to descriptions of disability and certainly aren’t meant kindly.

That’s when they stopped using medical terminology and started adopting euphemisms like “special needs” and “differently-abled”

The idea being that the language itself was causing the stigma and if disability either the word itself or a diagnosis was removed it would both remove linguistic stigma and create positive non-medical terminology.

This to was a failure “special needs” is used as an insult, The main premise that it was the language that created a stigma towards the people. In reality it is the people who are stigmatized and any word used to label us will by association be viewed negatively. They could change the dominant preferred label to ” fluffy bunnies” tomorrow and the most likely result would be that sales of pet rabbits would plummet rather than our benefiting from positive associations with cute animals.

This is why disability has returned as a label so long as it’s attached to person as a qualifier. In my opinion word order is irrelevant. Until the stigma attached to actual disabled people is tackled, we can call ourselves whatever we want, the oppression we experience will not save us.

That is not to say that mindful language choices are not important. Negative associations with words that describe disability should absolutely be challenged.

But so far as having a single supreme, universally accepted label is concerned, I don’t think uniformity is necessary. In fact linguistic deviance may help challenge people to think about why they use the language they do and may spark a conversation that goes beyond labels and looks at the people that choose them.

For me choice is key. If I am going to be labeled, I am not going to just accept a term that is almost certainly created by nondisabled people, I am going to define myself.

So to conclude I prefer the term disabled person/people because it is accurate and reflects my personal experience of disability but I accept and encourage other disabled people to choose for themselves.

Why saying “Everyone has some kind of Disability” is a Lie

It’s not an uncommon refrain when trying to build empathy for disabled people, just say “Everyone has some kind of disability, some are just more obvious than others. All kinds of people say this. Hell, I distinctly recall uttering myself one day during a planned day of disability education in fifth grade. A day that was not triggered by the curriculum but by my being publicly shamed by my teacher for wanting to do my science project on the physics of accessibility using the school as a model (somehow this isn’t science apparently, I’m still not clear on why though). My mother called the school to complain about my public humiliation, triggering the public education day. I still had to come up with a different topic for the science fair.

The education day in hindsight was utterly cringe worthy. As the only physically disabled student in the school (a feat only achieved because I don’t use a wheelchair) and the reason for the need of education in the first place.

I don’t remember most of what I said other than the platitude that I now advocate against. The day was otherwise filled with experiments meant to create empathy. They made us wear glasses smeared with toothpaste to emulate blindness and put us in noise cancelling headphones.

The day concluded on the students having wheelchair races around the playground. This actually only served to highlight my own disability because I’m hemiplegic and my left side is weaker than my right. I couldn’t actually propel myself forward. The best I could do was sort of turn in a circle.

My peers were never presented with stairs because that elementary oddly didn’t have any despite a universally ambulatory student population. Disabilities were just games they could put on and take off. Studies have since shown that this kind of empathy building doesn’t actually work and may do actual harm to how others perceive the disabled experience.

Hindsight being 20/20, I now cringe when I think back on that day. I also know why in my plea for acceptance to my classmates, I said those horribly inaccurate words “everyone has some kind of disability, some are just more obvious than others”. I wanted to be part of the group, I wanted to be seen as just like them. The problem is that I wasn’t and uttering those words did not give me access to them.

This was actually my second elementary school, at the first one I attended, I couldn’t even wash my hands after using the washroom. The sinks in that school were designed to conserve water and it was before the days of motion sensors. You had to keep holding on to the round tap for water to flow. When you let go the water stopped. My left hand was to weak. I could therefor only wash my left hand but not my right.

At both school’s I attended gym class was often a nightmare, I was always picked last for team sports (yes I know, not a uniquely disabled experience). Social exclusion got worse when we started learning volleyball. I was physically incapable of underhand serves which were mandatory. Instead of allowing me to skip serving or teaching and allowing me to serve overhand, I was paired with the nearest student who would balance the ball in front of me while I swung at it. This is not an effective serving technique and my peers resented having to do it. I know because they were vocal about it. I was horribly bullied for this and any other excuse the other kids could come up with. This was the reason I changed schools. Not because my first school was inaccessible but because of bullies. A problem that was unfortunately not solved by changing schools.

People resent (then and now) that I and other disabled people do things differently or are incapable of some tasks. I am also on the autism spectrum (I wasn’t diagnosed until I was 18) which can be accompanied by learning disabilities, which is true in my case. After getting academic accommodations in university my grades improved significantly. One of my accommodations was to have someone take notes for me so that I could concentrate fully on lectures and discussion. People who found out would often remark “of course, you do better with a note taker, everyone would” This is actually not true. Generally note taking improves an individual’s retention of the material, particularly if those notes are taken with pen and paper. You are made to feel that you are getting an unfair advantage when in fact you are just rectifying a noted disadvantage. I was once told by a peer who discovered I had a note taker (these things are supposed to be confidential but rarely remain that way) that I shouldn’t be allowed in university if I couldn’t do things exactly the same as everyone else.

I could go on with so many more examples of how being disabled results in both physical and social barriers to accessing public spaces and common social experiences like public school and university. These types of experiences are not exclusive to me, they are common experiences of disabled people everywhere and they often get worse or have more major consequences than public humiliation and rude comments.

So what does this all have to do with the line “everyone has some kind of disability”? Well it’s this, Some nondisabled people internalize this rhetoric and use it to make their common place and not actually disabling problems seem like metaphors for real actual disability. Telegraph Journalist Josephine Fairley albeit jokingly wrote

“writing this from the standpoint of someone with two legs and two arms whose only (small) disability seems to be that the bit of my brain which can process instruction manuals appears to be entirely absent.”

Having difficulty understanding instruction manuals is not a disability, in fact it is a pretty common issue. She uses this as a jumping off point to condemn actual disabled people who don’t like the trend in the media of making disabled people into inspirations. I’m not going to debate that issue in this post because it’s off topic. The main point to take away here is that a self described able-bodied person is using that position of privilege to first claim kinship with disabled people over a difficulty to understand instruction manuals. She then talks over actually disabled people, treating their opinions are wrong and misguided even though they and not she have to live with the consequences and results of what she advocates for.

In my own experience people have been less tongue-in-cheek about it than Fairley is. I have had people sincerely claim that being an introvert is a disability (it’s not check the DSM V if you don’t believe me) or that their ignorance of their own privilege and its tendency to result in them expressing themselves in oppressive (not just ableist but racist, sexist, homophobic, etc.) ways must be overlooked because they can’t help it. They are both capable of knowing its wrong but unwilling to actually trying to change.

Not everyone is disabled, saying they are does not create a bond or empathy. Equating things like occasional clumsiness to a mobility impair regardless of good intentioned motives is false equivalence. This false equivalence must end because instead of helping build empathy it is actually destroying it. It is just giving non-disabled people another weapon with which they can hide behind to continue talking over us or continue to oppress us while claiming solidarity.