Fighting My Internalization of the Hierarchy of Disability

I have had my autism diagnosis for a decade now and yet I often still hesitate to publicly identify myself with the label. For quite a while my Twitter profile only listed me as having cerebral palsy. I never thought twice about sharing that I had cp but I had misgivings about coming out as autistic. Ultimately I was more annoyed with my reticence to identify as having an Autism Spectrum Disorder, than I was about how being openly autistic might affect the way others perceive me. I however think that talking about why I felt that discomfort in the first place is important.

Disability, regardless of form or type comes with significant stigma in out society. That stigma leads to prejudice and discrimination, so it isn’t difficult to understand why some people who can hide their disabilities choose to do so. In the end it is a personal decision for which no one should be judged. But I already have a visible physical disability and cannot pass for nondisabled even if I wanted to, I’m already permanently labeled as disabled. So why do I feel compelled to hide my autism?

The answer to that lies in a phenomenon known as the hierarchy of disability. It is a social construct that makes certain kinds of disabilities more acceptable than others. It is an arbitrary system through which disabled people are judged and categorized and it’s something that many of us were taught (though often unintentionally) to internalize.

The basic idea behind the hierarchy is the prejudicial idea that disability is equated with being a burden or public nuisance (by this I mean that people are immediately forced to deal with the fact that the disabled person exists and might interact with them unexpectedly). So to maintain higher status a disabled person must not be perceived as either of those things.

Basically the less a disabled person makes the nondisabled majority think of other disabled people, the better. It’s why many nondisabled people are convinced that saying things like “You really don’t seem disabled” or “I don’t think of you as disabled” are compliments. What they are really saying is “I don’t associate you with all the negative things I think being disabled is”. It is also the root of the faux compliment widely hated by disabled people “you’re such an inspiration”.

It is all tied into associating disability with negativity but within the framework of the hierarchy, some people make out worse than others. People with intellectual disabilities or who are perceived to have intellectual disabilities are inevitably found near, the bottom.

None of that erases the prejudice and discrimination experienced by disabled people who are perceived  to be higher up in the hierarchy but it does come with privileges. Such people are at least socially often treated better and aren’t met with as much discomfort and fear.

In the end the hierarchy is flimsy though and requires the investment of time and effort of disabled people to maintain their status as less of a burden or nuisance because inevitably they enter new environments and meet new people who don’t automatically know where on the hierarchy, they stand. So depending on context a person’s position can go up or down at the whim of the nondisabled people around them.

And Disabled people do buy into this idea that they should avoid and shun other people with disabilities or deny themselves accommodations to be perceived as less of a burden. Buying in can seem like the only way to avoid a lot of self loathing. Plus believing yourself to be some kind of exception allows you to feel superior, like you achieved something.

Buying into the hierarchy also keeps disabled people separate from one another and keeps us divided. This is particularly problematic in terms of advocacy because either some people distance themselves from the disability rights movement altogether or have tunnel vision and ignore the needs of disabled people whose lives are different from your own.

Finding disabled people who buy into this idea isn’t hard. I’m not going to link to anyone because this post isn’t about judgement or blame. We are raised in this social construct and it is entirely understandable why people believe it.

I am guilty of it myself. It wasn’t until I started engaging with Disability Studies that I was even fully aware of how brainwashed, I had become and was able to begin dismantling those toxic ideas. My indoctrination was not systematic and the people who contributed to it had no idea they were doing it.

I grew up almost entirely cut off from other disabled children. The only contact, I had with them was tangential, when I went for physio or to the local rehab hospital for appointments or the odd event. I was aware of other disabled children but they were always separate often intentionally segregated in special classrooms that existed in hospitals or schools that I didn’t attend. It’s not hard to see how as a child who was almost universally mainstreamed that I came to the conclusion that I wasn’t like them. I would never have said that I was better than they were but the general discomfort I felt when I was around them shows that on some level I believed that I was.

On the rare occasions that I was enrolled in segregated activities with other disabled children, I chose not to engage and felt that the activities were too mundane (this is likely due to the fact that the organizers had no idea how to plan interesting activities for children with diverse disabilities). This only made me more convinced that I didn’t want to be grouped in with other disabled people. I began telling my mother, not to enroll me in such programs. It never occurred to me that the problem wasn’t the other participants but rather very poor planning and understanding on behalf of the facilitators.

As a child I had no formal accommodations in school, and on the rare occasions that I requested them, I was denied. The message that I shouldn’t have them was pretty clear (I had no idea until I was an adult that my rights had been violated).

Add to that, I was already feeling the widespread prejudice of being disabled. People would treat me like a toddler and use baby voices. I often felt compelled to say to people “I have a physical disability but there is nothing mentally wrong with me” (I cringe thinking about this now). It didn’t occur to me that their treatment of me was unacceptable period. Regardless of type of disability.

So when at eighteen, I was diagnosed on the autism spectrum it really threw me. On the one hand that diagnosis changed my life for the better in so many ways. I now understood my childhood so much more clearly. Understanding why I reacted to the world the way I do, helped me to put coping mechanisms in place.

It also opened the door for a lot of accommodations that I had been denied during my grade school years. Yet as I entered university, I hesitated in taking advantage of them. In fact, when one professor saw that I was struggling and recommended I seek accommodation, I was offended.

When I did finally seek accommodation I began to flourish academically which is what has ultimately allowed me to reach the academic level of PhD Candidate. Yet despite all the benefits not only the label and accommodations have afforded me, I still hesitate to publicly label myself because I know that the additional stigma of a DSM diagnosis confirms so much of the deeply held misinformation the nondisabled public has on disability.

Passing for neurotypical is both easy and hard. If I don’t identify, people don’t notice. At worse I come off as rude and standoffish. Yet the constant vigilance to police my own behaviour and function in society is exhausting.

Also I happen to really like myself and I am aware that autism plays a big part in making me who I am. If you removed my autism, I fear I would lose my self.

So for me, publicly identifying as autistic is not just a tool of public advocacy and identification with autistic community. It is also a rebellion against the parts of myself that were divide the disabled community and unify the dual parts of my disabled self.

So I Haven’t Posted in a While

This is just a quick post to update on why I haven’t written a new post in a while.

I just moved back to Toronto to start my PhD in Critical Disability Studies. I am busy unpacking and settling back in to life in Toronto.

I hope to get back to posting again soon, though I doubt I will be doing so at the volume I was before because I now have courses, assignments and work to contend with.

If you would like to contribute to my PhD Fund you can do so here. I would really appreciate any help, even if you just pass it along on Facebook or Twitter.

A Media Guide for Nondisabled People Talking About Innovations for Disabled People

Recently, I have written two articles on problematic media coverage of innovations designed for disabled people. The first was on the viral support among predominantly able-bodied people for a stair climbing wheelchair and a standing scooter. The second about Nike’s supposed shoes for disabled people which are actually only available in men’s sizes. In both cases none of the products being talked about are looked at critically so their flaws or limitations are never exposed.

These stories just become part of the able-bodied saviour genre of inspiration porn and inevitably do more harm than good because it leaves people who are unfamiliar with disability issues with an inaccurate assessment of what barriers still exist and the limitations on existing innovation.

I have therefor decided to provide a guide to talking about innovations for disabled people that will allow media creators to be more objective and hopefully limit the harm done by lazy inspiration porn inspired journalism or content creation.

I will use the two stories that I have already covered to show where more questions needed to be asked and more information given.

The first and possibly most pointed criticism I have of these kinds of stories is the framing. These are rarely meant to be true news stories. They are intended to be feel good click bait. This framing does not lead to a critical engagement with the content because such engagement might interfere with the intended warm and fuzzy feelings the viewer is supposed to have.

This is a problem of inspiration porn generally and it is harmful. The stories that impact disabled people’s lives should be told and they should never be diminished to the story that poses a balm to all the other bad news that surrounds it.

Doing that is both dehumanizing and perpetuates harmful stereotypes about disabled people which does not lead to warm and fuzzy endings for the subject of your feel good moment. (for more on the issues of inspiration porn go here and here)

A good way to gauge whether a story about disability is news worthy is to ask these two questions.

  1. If the subject of this story was replaced by a nondisabled person, would this still be news? If the answer is no, then you may want to reconsider it.
  2. Who is the target audience, is it everyone (this includes disabled people) or is it meant to appeal predominantly to nondisabled people? If the latter you should definitely think twice before running with it. If you are unsure, you should consult with disabled people to see how they feel about the story (the plurality of people is really important here)

Disabled people need to see stories that impact their lives in mainstream media. It is useful in both showing that media understands that the disabled experience is part of the broader human experience. Telling disability stories well also gives a more accurate representation of the disability experience to those who don’t live it, so disability stories can and do have universal relevance. They just need to be told in a more critical way.

In this article, I’m dealing specifically with how to cover innovations and technology but these ideas should be applied to all media coverage of disability.

Once you have determined that you do not want to ad another piece of retrograde inspiration porn to the world and that your story has actual merit. How do you do that story justice? The answer is ask questions. Don’t just accept the first answer.

Take the story about the Nike shoes which were widely glorified as shoes for disabled people. People who wrote about this story should have asked the following questions.

  1. Are these shoes really available to all disabled people? Look at different conditions that might require specialized footwear, is this shoe as universal as advertised. Are these shoes available to men, women and children?
  2. Does this shoe accommodate the orthotics that are common among disabled people? Things like heel lifts, AFOs, or Bioness sensors.
  3. Ask why any limitations found from the first two questions were not addressed by the company.
  4. Ask if the company plans on addressing these issues.
  5. Ask why a single company is addressing this issue.
  6. Ask other companies why they aren’t providing specialized shoes.
  7. Does a company providing a long overdo product deserve to be treated as heroic?
  8. Does the limited useability of their product indicate that the company was genuinely trying to help or just get good press?

In reality these shoes were only available in men’s styles and sizes which means that anyone who doesn’t fit those sizes cannot benefit from them. This adds up to the majority of disabled people as men and women with smaller feet as well as children were entirely left out. Nike however, still got a lot of great press and was positioned as a hero. I found no mainstream criticism of the limited usefulness of the shoes.

Attempts to engage with people who created these stories either resulted in no response or an acknowledgement but no change in content.

I did successfully get a response from the person who curated this Upworthy post on the Nike shoes.

She acknowledges the limitations but didn’t change or remove the story from Upworthy. It still has quotes like,

Nike proves that you can create a product designed for the needs of a smaller community that has mass appeal as well.”

The reality that Nike failed to deliver on its universal claims and instead only serviced a very small portion of the disabled population, isn’t really in line with Upworthy’s standard of feel good or inspirational blurbs. It is however disappointing that they would leave the story in its clearly inaccurate state even when faced with that inaccuracy (the fact that this story is blatant inspiration porn and that Upworthy is a huge purveyor of disability inspiration porn is another post altogether).

In the case of technology like stair climbing wheelchairs and standing scooters, media creators should be asking questions like,

  1. Is this  invention going to be marketed or will it stay a university engineering project?
  2. If this device is marketed who will be responsible for paying for it.
  3. Does this device answer the needs of everyone who has difficulty climbing stairs/navigating narrow corners?
  4. Is this really the the best and most comprehensive way to address physical accessibility barriers?
  5. What the the popularization of these devices mean for people whose barriers to access are not addressed by these devices?

These questions are far from comprehensive but they are a good start in contextualizing innovations for disabled people. Using them as a spring board for your story will help you have a more nuanced and realistic representation of the facts and their actual impact.

I will conclude with one final and utterly crucial piece of advice.

Always include the voices of actual disabled people, free from the spin of business advertising. Don’t just have people who talk about disabled people and the impact a given product will have. Ask actual disabled people. The wider variety of disabled voices you get, the better.