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

10 thoughts on “Acceptance and Representation”

  1. Amy writes this post with her usual passion and insight. I am one of the “successful” ones. I don’t feel better than anyone else, but I am blessed with abilities that have allowed me to sustain a marriage late in life despite years of feeling marginalized. After a life of underemployment I have positioned myself in work I love just years ahead of a “normal” person’s retirement age. I have autism, the variety that used to be called Asperger’s. The “other” disabled ones, the ones who don’t succeed, who “need help with everything”, have intellectual disabilities, and “cannot always control what their body does,” I am ashamed to admit are largely invisible to me. I don’t know where to find them. I don’t know if I would be comfortable interacting with them. How can familiarity develop in the absence of their presence? Is this what Amy means by representation? For me it is more a matter of not having anyone with these challenges in the domain of my daily affairs. How do I go about changing this in the course of my little life? I really don’t know where to begin. What can I do to address this lack of representation? Yes, it is a deplorable state of affairs and I am part of the problem. I wish I knew what to do about it.

    1. Hi Gordon
      You cannot find us because we are not visible. Representation means making sure we are invited, seen, addressed, valued and heard.
      One thing you can do is making sure we are always included. If someone invites you to speak, you can ask them to invite one of us. You can amplify our voices.
      One way to amplify our voices is not accepting that only some Autistics (and disabled) people are visible and demanding that all of us are part of every conversation

  2. I posted above that I agree with the spirit of this blog about the importance of representation but did not know how to apply it in practice. Amy responded by telling me that “one thing you can do is making sure we are always included.” I have been unable to sleep tonight thinking about this. Then it dawned on me. Recently I discovered an online academic discussion about presumed competence. It was started by a university professor of special education over a year ago to get feedback for his next article. The article has since been published. It rejects the whole idea of presumed competence as well as the philosophical ground it sprung from associated with facilitated communication. There have been many participants in this discussion including me, but as far as I know no one has identified as disabled, no one has reported that they found presumed competence helpful in their own lives, and no one has said they are a user of facilitated communication. I would invite any such person to be part of this discussion, but it is not for me to make the invitation. No invitation is needed. Everyone is welcome to participate. I can only say that I would find the discussion to be richly enhanced and would love to see such representation take place. The discussion can be found at
    https://www.researchgate.net/post/Is_presume_competence_a_propaganda_phrase_for_fully_inclusive_education_ideologues#view=57d0aa76f7b67ef6fe3edff1
    Amy writes that “you cannot see us because we are not visible.” It takes courage to make yourself visible when certain people with power and influence don’t believe in you. I have a kind of autism myself so I know something about how that feels, but I don’t pretend for an instant that I know what it is like to have someone else’s challenges. The important thing is, let’s all support each other to be more visible no matter what our challenges are! Thank you for this forum and for the advocacy that is found here.

  3. Dear Amy,

    I agree wholeheartedly with everything you are saying (as usual). I am a multiply-disabled Speaking Autistic (most of the time–I am a part time AAC user now that I have access to various AAC tools), and have a lot of privilege because for short periods of time I can blend in with the neurotypicals, and for longer periods of time I can blend in with the “quirky artist” neurotypicals that I work and go to graduate school with.

    I have just started graduate school at California Institute of the Arts, a school that is not very accessible in many ways. One of my missions in being here, however, is to try to force them to incorporate accessibility not only in ways that accommodate me personally, but just generally. For example: getting them to hire ASL interpreters for every show. One of my missions in life is to create art that represents disabled people, especially those who are most silenced. I make film and theatre, but want to run a community arts center for disabled and/or queer people, so I am actually interested in supporting all forms of art. I want full time AAC users to show up in my work, whether they are actors or painters or box office personnel–whatever they want to do, I want to empower them to do, like I want to empower all the disabled and queer people who walk through my doors.

    I am relatively new to AAC. For most of my life I just sat silently and nodded or shook my head in instances when my voice was stuck. Because of this, I didn’t grow up with people who used AAC, and don’t have a network of fellow AAC users to connect with. So my question to you is coming from my position both of privilege (in being at graduate school at a private arts college and being able to blend in with the non-disabled people enough to have been granted admission to this school) and my position of isolation from my community.

    Can you point me in the direction of any and all artists of any artform who use AAC? I want to know who they are and what they’re working on, and I want to start a dialogue so that, even if they are too far away geographically for me to work with them on any projects, at least I will have a reference point from which to work that will allow me to do better at working with other AAC users.

    Thanks so much,
    Marrok
    (they/them or he/him pronouns)

  4. Greetings! I am new to the world of Autism and am currently on my journey of self discovery. I feel quite strongly that I am on the spectrum and have been searching for like minded women to collaborate with. I’m currently in therapy and have just began to broach the subject of ASD with my therapist. She seems to think if I had the condition it would of been caught in early childhood. However, I have a first cousin who is most certainly on the spectrum to a more severe degree. However his parents, my aunt and uncle chose to more or less ignore his challenges and gifts. This seems to be the trend in my family… brush mental illness or differences under the rug. I’m coming to the network in the hopes to find support as I feel that I am on the right track in suspecting my condition. Along with this self awareness has come an entire host of realizations about my immediate family, and most particularly my Mother. She passed away in April of 2015 and I has always thought she suffered from some type of mental disturbance. It wasn’t until her death bed that she finally wanted to seek professional help but of course by that time it was too late. I’m a young woman now, 29 and currently trying to get into the field of Psychology, which was my undergraduate degree and I’m feeling lost and concerned about my status. If i am Autistic what if I never get a diagnosis? I’m fairly certain my Mom was ASD and my older brother and I have spoke extensively about how he feels he may be on the spectrum as well. He doesn’t want a diagnosis however and seems content just knowing that it may be a possibility for him. Myself however, it almost feels like my entire existence and identity is in ASD. It is my hope that I am accurate in my hunch and that at some point, sooner rather than later I can successfully obtain a diagnosis. For two reasons: 1) All my life i’ve felt different like an outcast and suffered from anxiety, depression and low self esteem. 2) I desperately want to advocate for other like me! ASD isn’t something to be ashamed of. We are unique and we all have special talents that the mainstream schooling system stifles. A diagnosis for me would be everything. A proud moment for me to acknowledge the validity of mental illness in my family and demonstrate that its nothing to be ashamed of. I hope this post find someone well and I get some type of response or support. Thanks for taking the time to read my thoughts!

    Kind Regards,
    Katherine

    1. Hi Katherine,

      You’re not alone, I too have suspected for a few years that I am on the spectrum (I’m 26). I have read some of the many memoirs out there written by women on the spectrum and their stories resonate strongly with me, as does yours. I have expressed my suspicions to doctors, who have either been very sceptical or have wanted me to come back later with evidence such as online tests I’ve taken. Each time I’ve been disheartened and not gone back. However, I’ve built up the courage to go back to the doctor. As long as we are persistent and present considered reasons for our suspicions, there is no reason why we can’t be sent for assessment. Then we can finally get the diagnoses we deserve, and get on with life with a clearer understanding of ourselves. The thing I’m most looking forwards to is being able to tell friends and family and just about anyone! I want to challenge people’s views of autism, and feel a greater freedom to be myself and not put on the “normal” act.

      With regard to your therapist’s scepticism, I suspect that it’s a result of a lack of understanding of ASD, and especially how ASD presents in women as opposed to men. When most people think of autism, they think of people who are severely affected, for example children who go into a temper meltdown every time they enter a supermarket. It is also seen as a male condition, and one which requires you to have an obscure and obsessive special interest. Of the memoirs I’ve read, plenty of women are diagnosed as late as middle age. What people don’t realise is that when “neurodiverse” traits are common within a family, a child with ASD might not behave very differently to the other children in the family. My grandmother has very severe dyslexia. I suspect my father has ADHD. My brother used to cry because his clothes hurt and to this day hates physical contact. I was just a quiet sensitive girl living in a dream world. I’m sure none of my family ever saw my behaviour as weird. I would suggest either buying a book about ASD in females and presenting it to your therapist, highlighting how you believe it applies to you, or point them to online resources. Don’t worry, you’ve got plenty of time and it’s all part of the journey.

      I wish you luck!!

      Kirsty

      1. If you are seeking right now or working with a therapist, there is a recent article in Scientific American (a well-respected journal they cannot ignore) that discusses the issue of why women were not diagnosed as children and even now it remains hard to get a clear diagnosis for women and girls. It may be worth waving in someone’s face if he or she doesn’t have the most recent information.

  5. I am a self diagnosed aspie. I can fit into many situations, learned how to talk to others in routine conversations, academic environment, some college banter. But I can not talk about feelings, or “be there” for my spouse. I am on my third marriage and see now that it was my spectrum challenges that did not allow me to connect with my spouse as they wanted. They felt alone, left out. My current spouse I have shared that I am on the spectrum and have tried to have him read about women with Aspergers but he will not attempt to look at it, says I am just making excuses and I am self centered and don’t care about him. He is constantly expressing anger and I can not deal with anger. I just shut down. Is there any hope? What should I try?

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