Autistic and Dyslexic: The Exhausting Reality of Being Misunderstood
Everything below is written from my own perspective and how these interactions landed for me at the time. I know others involved might tell it differently, but this is my truth, and it deserves to be heard too. Names and identifying details have been left out. Quoted exchanges are taken from written correspondence in my possession.
This year there was a Queer artist open call specifically for trans, intersex, agender, non‑binary and genderfluid artists. Yey! Great idea and of course I applied. As I was filling in the form, I thought about how amazing it was that the organisers were asking about any disabilities the artist might have and an Access Rider. Yes! Finally, a Queer and Artistic organisation that shows real allyship to disabled people. Even if I got a rejection from this exhibition, it still felt good to apply to something where they were going to provide real equal opportunities.
What is an Access Rider?
For those who haven’t heard of an Access Rider before, it is an “access documents are used by rock stars and divas all the time—they’re simply called riders and no one bats an eye. this is because they are helpful for everyone involved: the person can say what they need in order to do their thing, and the venue/institution knows exactly how to provide support for them to do their thing.” (Johanna Hedva)
Part of the Access Rider I provided to the organisation contained my communication needs, written by a Speech Therapist in simplified form.
Communication
I am an English Speaker only. Due to my disabilities I am unable to speak Dutch. I can read some Dutch and some French but will need assistance if there is no English used at an event/venue.
I need time to process what you say and what I would like to say.
Sometimes I find it hard to understand what you say. It is sometimes helpful for you to slow down or say it differently.I am a logical thinker and I am often very literal in how I interpret information.
I find it easier to response to closed or precise questions.
I might frown if I am confused.
I find it hard to monitor the volume of my voice.
I may need to ask additional clarification questions for emails or face to face communications.
I am unable to use telephones, however, I can use video calls if all people are on video.
Please do not provide me with information in the form of text within images unless you have provided the content as ALT TXT in addition because I use Screen Readers to help me read.
Please do not provide me with anything that uses a blue background. I will be unable to read this and it is physically painful (causes migraines).
None of these needs were taken into account by the organisation, though, which led them to make incorrect assumptions about my intentions in several emails. I communicated in a polite, understanding, and appreciative manner. At least to the best of my abilities, and I still do not see anything wrong or rude in my communication to this day. I use language literally; I don’t understand subtext and subtlety; my brain doesn’t work that way. If anything, I get confused trying to read text with too much “fluff” in it (“fluff” is the way a Speech Therapist described it to me). This, in turn, resulted in the organiser conducting themselves in an unprofessional and ableist manner through the way they characterised my communications.
The Exchange of words
It seemed to me like a good idea to use some of the exchange of words as good examples of the miscommunication that often takes place. I KNOW it is a miscommunication and often give people the grace of acknowledging it as a miscommunication rather than confronting them directly with their ableist behaviour. Unfortunately, that is usually met with them refusing to believe they have misunderstood me and continuing with their own characterisation of my intention and words. This hurts so much and ends any opportunity for us as humans to fix things or communicate with each other. How can I ever talk to people who refuse to acknowledge something went wrong and instead push the blame onto the disabled person? I can’t; it’s too heartbreaking.
I applied to the Queer artists open call a while ago. I am well used to applying for these kind of exhibitions where there is a lot of applicants and criteria can be vague. A lot of the time, the response you receive is in the negative, so you get on with your day and move on to the next application. No big deal; there are many reasons why you might get a no. Your work might not quite fit the theme; it might be too NSFW for the venue; it might not physically fit the space; you might not have strong enough artwork, etc. It is commonplace to ask for feedback, though, when you receive a no; that way you can see if there are any improvements you can make for future applications.
As with all open calls I receive a no from, I reached out to the organisations to say:
Me: “Thank you for letting me know. May I ask what the decision criteria was and if priority was given to Belgian and Dutch creatives instead?”
Here is the intention I described above, merely to find out if there is anything I can improve, then move on with my day and onto other potential opportunities.
Organiser: “no, there was no priority given to Belgian and/or Dutch creatives. We receive +/- 800 proposals each year. So not being selected does not mean that we felt a proposal was not good enough. Sometimes it is also a matter of good match with our venues and a good match concerning overall selection.”
This communication to me answers my question perfectly well, whilst also informing me that for whatever reason the organisers cannot tell me the criteria. This makes sense; many have vague criteria, it’s too complex to put into an email, it was a jury decision, or they do not wish to disclose the information (which is perfectly within their rights to do in my opinion). It did feel a bit strange for them to use the phrase “...not being selected does not mean that we felt a proposal was not good enough.” as I wasn’t asking this. This was my first signal that the organisers were already mischaracterising my intentions, and honestly, it showed a bit of elitism on their end, like they assumed I was not a professional artist used to dealing with open call rejections on a fairly regular basis.
As far as I was concerned, though, this was basically the end of the conversation. All that was left to do on my part was to acknowledge I understood the selection criteria could not be shared and thank them for their time, as it’s polite to show appreciation for organisers taking the time to respond to you. Many of them don’t make that effort, so it is genuinely appreciated when it happens.
Me: “Thank you, I just wanted to understand what the selection criteria was so I could make improvements in future (If it was due to nationality then obviously that wouldn't be something I could control), but it does not appear you wish to share this information, which is okay and I still appreciate you taking the time to respond to me.”
But that does not seem to be what the organisers read, and I genuinely do not understand how they could understand my words any other way than what I have described. This kind of thing happens to me a lot. I use the best words I can find when words are so foreign to me, and people misunderstand my intentions, leading to a lot of miscommunication or multiple emails where I am expected to explain myself and grovel for forgiveness for a wrong I never did. So I was shocked when I started to receive further emails from the organiser that were completely unnecessary and repeated over two days.
Organisers: “We do not have hard criteria or a sort of list of boxes to check, rather a group discussion where everyone talks about the way they feel presented works correspond with the elements we have put forward in our call and the way everybody on the team feels about the works. Like I said, sometimes it is also about having things come together: if we have a lot of proposals that are sculptural then we sometimes need to make tough decisions where maybe there are not a lot of proposals that are photography which makes a decision easier.
Anyways, there is no information am withholding. I do not know what more to say then that it is at the end the result of a group discussion.”
Okay? I don’t understand the need for any of this email at all. It did, however, show me the organiser had absolutely misunderstood my communication, though, because they seemed to think I didn’t understand how open calls worked, how decisions are reached, as well as acting like I was accusing them of something. Completely bizarre and confusing to me.
Me: I believe from the tone of your last email you have misunderstood my words and intention which is common when I am Autistic and Dyslexic. I am also not Belgian, and it is both polite and normal for someone to reply to emails thanking them for their time and for making the effort to respond. I am uncertain where the miscommunication has occurred, apologies for asking questions that have become misunderstood.”
Here is me trying my best to explain why I sent the previous email thanking them for their time, reiterating my disabilities (which they are already aware of from my Access Rider), and giving the grace of saying I can see a miscommunication has occurred. I even apologised that my wording must have caused the misunderstanding. Apparently that wasn’t good enough and sent them into complete denial and rage. They completely rejected the fact that they had misunderstood me or that there had been any miscommunication and proceeded to tell other organisations their own story, thinking this entire exchange was about “…a rejection feels personal, but in this matter, it really isn't” (other organiser they had shared all of our emails with). I was mortified that they would think this exchange was me “not coping with rejection” when I actually was just asking for information and thought the conversation should have already ended over two emails ago.
When "No" Isn't the Problem, It's How You're Treated
Many emails later, it felt like this was getting out of hand and purposefully ableist towards my best efforts to communicate, so I had to raise a complaint (the complaint went nowhere, and I was responded to like I am a child who does not know how open calls work, and the exchange reduced to a tantrum over the rejection rather than the fact the organisers had behaved in an ableist way). I hate it when I feel the need to do that, and the whole exchange might seem insignificant to you, but it’s very important to me as an Autistic and Dyslexic individual to be understood and my communication differences to be considered. I have to experience, on a daily basis, miscommunications, mischaracterisations, and rejection simply because of how my brain works. I do my best efforts with language all the time, but I am constantly on the receiving end of criticism for simply existing. In Belgium, I have been told verbally:
“maybe you are too disabled to be among people”
“learn some comprehension skills”
“you’re too radical”
“you are doing it on purpose!”
“everyone can learn to act like a human being”
It hurts. When you are told these things regularly, it adds up. So when people are ableist by purposefully refusing to acknowledge a miscommunication and push the blame onto the disabled person, it hurts too.
The Impact of Performative Allyship
This has left me feeling like people with disabilities are simply not welcome in both the Art and Queer community in Belgium. I have had to sit with myself for days now in isolation, wondering why I bother to push myself beyond my limitations every day when it is thrown in my face by people who claim to be my ally.
You cannot sit there and say you have empathy when you assume all adults have the same language skills and processing abilities as you. There are multiple reasons why a person’s understanding and word usage might differ from yours, and it cannot be assumed that the person is doing it to be “rude” or “lazy” every time. Trust me, if Speech Therapists could cure the way my brain processes communication, they would have done it already! I WISH my language processing difficulties were simple rudeness; my life would be so much easier if it were.
When you use pro-disability buzzwords like “neurodiversity”, “access riders”, “accessibility,” I expect you to provide a safe(r) space. When you use phrases like “symbol of resistance”, “reclaim space,” and “Public debate may narrow. Life doesn't.” in your artist open call, I expect you to mean it. Performative language like this is harmful because you set disabled people like me up for a huge fall. We think you are our allies and are going to make an effort to make actual accessibility changes. When you do not make those accessibility changes, it hurts so much worse than if you had been blatant in your ableism from the beginning.
Your performative act makes me have to question all the organisations associated with you. I have to doubt genuine words of allyship in case they're actually performative. You snatch away hope with your performative activism.
It’s taken a lot out of me to put this together (as writing or speaking always does). Still, I hope that, in expressing this experience, some people will sit and think about the words they use, whether they are actually being considerate of other people’s disabilities, and whether they are still leaving disabled people behind in their fight for their own rights, as we have seen throughout much of Queer Activism history.
