Acceptance and Representation

We, Autistic activists and our true allies, talk a lot about Autism Acceptance and how important it is to value our neurology.

Acceptance shows that Autistics are respected as we are.

I want more than acceptance though. I want representation. I want autism and Autistics – and all disabilities, and disabled people – to be represented in all media, politics, everywhere.

Acceptance and Representation

Text reads: “I want to see these disabled people in the next mainstream TV show. I want to see them mentioned, positively, in the news.I want to see them in political conventions, with politicians showing their support to all disabled people, not only the “successful” ones.I want them to be asked about their opinions on disabilities, and on everything else.” Image description: The background is blue with a silhouette of a movie camera in the center.

It is not hard to see that disabled people are under-represented, and misrepresented. News outlets talk – about us – to our parents, and to self-proclaimed experts, but rarely to us. TV, theater and movies hardly ever hire visibly disabled actors to play disabled characters. When the theme is autism, the stereotypes abound, the reality of being Autistic is ignored. Important decisions affecting our lives are made without us.

Note: there are some movies and documentaries about disabilities, and with disabled actors and writers, but these are the very rare exception, usually without a lot of reach due to media bias.

It is not hard to see that – if one is really paying attention – in the still rare occasions when a disabled person is an active part of an event, they are the “successful” disabled. Usually someone who has a college degree, someone who does, or can, hold a job, someone who will not make non-disabled people feel too uncomfortable when they see the disabled person.

I applaud them. Some of the disabled people I just mentioned are my friends, and they deserve all the praise. Many of them do amazing advocacy work. And they are not free from the stigma, they still have to fight for representation.

This post though, is about the “other” disabled people.
The ones who never finished school, or who are “Special Ed graduates”
The ones who have intellectual disabilities, and who cannot always control what their body does.
The ones who do not communicate in a way most people understand, a way that is deemed “non-communication”.
The ones who need help with everything.
The ones who need time to organize their thoughts, and type their message.
The ones who don’t “look pretty”, the ones who act “weird”.
The ones who do not fit the ableist definition of success.
The ones who are also disabled people of color, especially black disabled people.

I want to see these disabled people in the next mainstream TV show.
I want to see them mentioned, positively, in the news.
I want to see them in political conventions, with politicians showing their support to all disabled people, not only the “successful” ones.
I want them to be asked about their opinions on disabilities, and on everything else.
I want to see Autistics who need a lot of support being the keynote speakers in all conferences, not only the ones directed at us

I want to see these groups represented because I am part of them.

I have to say this, and some in my disabled community will not like it: all disabled people deserve representation, not only the ones whose “mind are ok”. I still hear and read disabled people devaluing those who do not have that elusive “fine mind”. This is code for “I am not intellectually disabled, I am fine”. It is ableism by disabled people toward disabled people, and it is not ok.

If there is is a lot of discrimination and stigma toward disabled people who are “successful”, college educated, can hold a job, “average-to-high IQ”, there is even more discrimination when the disabled person is not “successful”. If we are perceived to be intellectually disabled, or if we need “too much” help, most people prefer to keep us out of sight; we are used as examples of how inadequate and flawed the system is, but we are denied a voice; we are props for “buddies” initiatives, we have friends assigned to us, supposedly to make our lives less “miserable”. Mostly, we are ignored.

Not being represented feeds the already biased image that the media portrays of us. Not being represented validates the absurd concept of mental age, of devaluing and infantilization, which will then validate the idea that we are nothing more than burdens on our families.

Not being represented makes us invisible.

Recently, in Sagamihara, Japan, there was a mass murder of disabled people. I believe some, if not most of them were very disabled. The murderer planned the attack, and chose the victims because, according to him, we don’t deserve to be in this world, we are pitiful, we suffer and cause suffering, we are an unpleasant sight for the rest of the world, and we are better off dead. He does not feel sorry, his only regret is that he couldn’t murder more than the 19 disabled people he killed.

It was a horrific mass murder. Yet, the always busy and engaged social media – and the mainstream media – were mostly silent. No “We Are Sagamihara” hashtags, no profile pictures changed to Japanese flags and hearts. The silence and the absence of outrage shows how devalued our lives are, how invisible the world wants us to be – in life in death.

I’ve seen an article that pointed out that disability carries such a stigma in Japan, that families feel shame. The victims remained unnamed. Invisible in life, unnamed in death, forgotten. The shame is not unique of Japan. Disability pride is a foreign concept to non-disabled people, especially if the disabled person is not “successful”, if the disabled person is not “fine”.

We, the very disabled, are only – somewhat – visible and valued if we prove that we are “intelligent”.
If we need full assistance with personal care, we have to show that our “minds are fine”.
If we don’t speak, we have to prove that we have thoughts, then we are not allowed to make mistakes, ever. If we do, our words, all of our words ever typed, are not ours.
If we are intellectually disabled, we are “special” but not worthy. We are pitied.

We are not represented because most non-disabled people, and some disabled people, are not comfortable seeing us – the “unsuccessful disabled people” – as equals.

In the same way that Acceptance is the step after Awareness, Representation is the needed step after Acceptance.

Representation makes us visible. Being visible means we are seen as human beings with rights.

Representation is the step we need to erase words like “tragedy”, “life sentence”, “like a toddler”, “unable to (do anything)”, “mental age” from blogs and news about disabilities.

Representation is the step for the world to – maybe – see a mass murder of disabled people as what it was: a carnage, a great loss of human lives. Even if those lives were made invisible by so many.

Amy SequenziaAbout the Author, Amy Sequenzia