autism

elaborations on the neurotypical-run autism panel at LSELitfest

(Figured I might as well post the whole thing here, so everyone’s clear on the position. As always, sorry, I’m incredibly long-winded, so I’ll present it without comment and spare you the secondary essay.)

From: Me

To whom it may concern,

Hi. I hope I’m sending this to the most appropriate email address. It’s recently come to my attention that your upcoming event for the 2017 Literary Festival, “Viewing Autism Through The Arts Lens”, is an event about autism in the arts without a single autistic artist on the guestlist. Or, indeed, a single autistic anyone, though I note you’ve made space for a Martin Knapp, who has kindly described it as “the most costly medical condition in the UK” elsewhere on your site, helpfully adding another voice to the damaging discourse that views disabled or neurodiverse as a drain on the economy, one in a long line of perspectives that have led to the reduction of welfare, state assistance and services to the point that the UK has been declared in violation of the rights of disabled people by the UN. I digress.

I’m curious to know what the logic behind this decision is. It’s long been a mantra of the disability rights community “nothing about us without us”, and this sentiment carries over into the neurodiverse community too. It’s an unfortunate fact that we’re living in a world that essentially views us as less than human, one that on the whole doesn’t acknowledge our own perspectives as valid – though there are endless thinkpieces from “autism families”. The concern is that without us, phrases such as “autism costs the UK more than heart disease, cancer and stroke combined” (as seen in that article about how expensive we are mentioned above) tend to get thrown around with very little thought as to how it might impact a person when they hear their lives and personalities compared to three deadly diseases.

It hurts our feelings, is what it does. We have those. Our feelings and identities are tied inextricably to our autism, and they do not very often align with parents or the experts who try to speak for us. It’s for this reason that we’ve had to establish our own communities online that are distinct from the spaces used by so-called ‘autism parents’, or why we prefer to use the infinity rainbow symbol whilst many parents and carers use the puzzle piece. From a neurotypical perspective perhaps we are puzzles, though the same could be said in reverse. To ourselves and each other, we are not: and how will we learn to build bridges between our worlds if we are consistently denied representation at the individual, cultural and political level?

On that note: representation. it is very worrying to me that the blurb for the event considers two works by neurotypical creators as ‘increasing awareness of autism’. They increase the awareness of the autistic stereotype going way back to Rain Man: the savant, the emotionally distant, the mathematically-logical. The white male, specifically: did you know its harder to access diagnosis or support as a woman or as a non-binary person, because all the previous research has been skewed towards male subjects? The way that we are represented in cultural works has an impact on more than just our entertainment time: it reflects, but it also shapes the very way society views us.

Autism is far more complex and beautiful than any of these works give it credit for: you are being given an insight into the basic and biased concept of us that the communication barrier between us and non-autistic people has created. We do not think the same as you, but we also do not think the same as each other. We are, many of us, artists and creators, not only the stereotype of mathematicians and scientists (though some of us inhabit both these worlds: we, too, are complicated, and not only because you don’t understand us. We are human, and our passions are varied). We write poems, we create art, and we pour all of the things that we struggle to communicate otherwise into this work. Is there a better way to get to know us? I mean, it’s certainly more effective than watching Ben Affleck enthuse about using autism as a cheap plot device to portray some kind of savant hitman as though he’s doing us a big favour (he is not, though I’ll spare you the tangent analysing why portrayals of autistic people as savants or completely unempathetic is dangerous).

When you represent us only through the perspectives of our family members, or for people who find us little more than fascinating mysteries, this is not a discussion, a debate, or anything other than ableist voyeurism. And frankly the observational skills of most people who stare at us like we’re caged animals are lacking. They don’t see the mechanics of it, or the art, or anything other than someone they believe to be ‘trapped inside their own world’. Our world is the same as yours: we simply express it differently. We don’t need pity, or to be stared out from the outside, we need change. Change is scary, but it can be exciting and fascinating too, and aren’t you supposed to be the ones who are less rigid, better at adapting? You’d enjoy it, I think, if you only gave it a chance. Maybe we’d all learn something.

How far can arts and literature further revolutionise the way we understand autism? I can answer that one for you: until you start involving us in discussion about us, until you give us the space and recognition to share our art in all its breadth and individuality, until autism representation is more than just a neurotypical repetition of the stereotypes everyone already knew….pretty much not at all. Get a panel of three different autistic artists, though, then you’ll see how much we can revolutionise. And you get to be a part of the movement fighting for our rights and our representation. Wouldn’t that be something to be really proud of?

I’d appreciate a full explanation for why you believe it’s appropriate to have a panel about autism and the arts without a single autistic artist. Why do we not deserve a place in the conversation about ourselves?


Thank you for your time,

Sophia De-Hayes
(an autistic person)

***

From: LSE

Dear Sophia,

 

Happy new year.

 

Many thanks for your email. The points you make are the very ones we are interested in exploring during the event – how far can portrayals in art and literature help us understand the reality of autism and are the representations accurate.

 

We fully agree with you that there does need to be a person with autism on the panel to do this, and this is an approach we take for all of PSSRU’s events as far as possible. Unfortunately we are awaiting confirmation from a final speaker (who has autism) and because they have not fully confirmed we did not want to put their information up as yet. We will be doing so shortly.

 

I look forward to meeting you at the event.

 

With best wishes
—–
***

From: Me

Dear —–,

Happy new year to you too! I do appreciate the fact that you’ve got in touch with an autistic person for the event, but even so that means that our views would be outnumbered three to one. How will the panel be moderated to ensure that the voices of the three neurotypical people do not negate or overwhelm this person? Furthermore, without knowing who you have got in touch with, will the event adequately represent intersectional autistic experiences? Autistic people of colour are vastly underrepresented, as are non-male people, queer people, etc. I hope you can see my perspective here, and I know I’ve spoken with others on the spectrum who express the same concerns. The fact is that with only a single person representing our actual community on the panel, it smacks more of tokenism than anything, or of assuming that one person can speak to the experiences of all. Which they can’t: there’s good reason it’s called a spectrum!

Will the event be open to discussion/questions from the audience?

Respectfully,

Sophia

***

 

From: LSE

Dear Sophia,

 

Thanks for your response. To some degree we have the issue of trying to be representative across all speakers for events, and we do understand that one person can’t be representative of a whole group or community; unfortunately with time limitations this is more complicated. The event will have time for audience discussion and this (as with previous events) allows us to bring out more comments and perspectives very usefully. Autism is a theme within our research studies and this event will hopefully be adding to the discussion with other opportunities to discuss issues further.

 

The chair – Martin Knapp – has a lot of experience of moderating discussions to ensure all speakers are not overwhelmed by other speakers, and we do brief and meet speakers in advance to ensure they are happy and comfortable.

 

Thank you for raising your queries. We will collate comments and thoughts beforehand as part of briefings to the speakers and chair to bring out in discussion at the event.

 

With best wishes
—–

***

From: Me

Dear —–,

Thanks for your fast response. I understand you are probably not personally responsible for booking events so don’t mistake me for blaming you specifically here, but it should be known that this is not a satisfactory reason to have (maybe) one autistic person when you’re giving enough time to multiple non-autistic perspectives. I know you wouldn’t be able to represent the entire community, but there’s a chance depending on this one autistic speaker’s response that you won’t be representing any of it. What’s the point? Furthermore, the event should be moderated or at least co-moderated by someone from within the arts community who is on the autism spectrum. Why should we trust a (presumably) neurotypical researcher to act in our best interests? The only thing I can find on Professor Knapp’s history with autism is talking about us in terms of economic cost.

The event is not adding to the discussion until it adds us to the discussion. Every day of our lives we are denied places in autism research, in culture, in society. It cannot and should not continue, and if your institution is truly committed to its research studies it should recognise this, though I have my fears about this. I have read one other article on your institution’s website, as I think I mentioned in my first email. It compared autism to “cancer, heart disease and stroke”. Research that seeks to eradicate us like a disease is not what we need: autism is inextricable from our identity on all levels. We do not have autism, we are autistic. Cultural representation without our consent or involvement, watered down and oversimplified for neurotypical consumption, is not what we need.

Again, I’m sure it’s not down to you personally, but if nothing changes about the event I’d hope you could at least make everyone who had a hand in its creation aware of this fact: The pervasive and poor understanding of autism threatens not only our happiness but our safety, sometimes our lives. We need you to help us find a space and a way to speak for ourselves, to protect ourselves. You have the opportunity with this panel. It is being squandered, and we are the ones who always end up paying for it.

Respectfully,
Sophia.

***
[Awaiting further response, if there is any.]

 

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