#CASDASummit2018: Day 2 (Pt 2) – #UnspokenPriceOfAutisticAdvocacy
So, as mentioned in the last post, this post is focused entirely on our panel – First Voice Perspective – The Unspoken Price of Advocacy. Note that the panel was recorded, and I’ll be putting up a link to that recording when it goes live.
The panel consisted of myself, Corey Walker (from BC), Patricia George-Zwicker (from NS), Jackie McMillan (from ON) – all of whom were on the CAPP Advisory Group with me – and Daniel Share-Strom (from ON). There was supposed to be one more, Bruno Hache (from ON), but unfortunately one of his best friends committed suicide on the Monday, so he couldn’t make it.
But before I get to the contents of our panel, I want to share a picture with you – a picture that was taken of pretty much all the attendees of the summit. (It’s not loading into this post, so here!)
So, I mentioned in my last post that myself and two others on this panel spent the hour previous to this in the quiet room, preparing ourselves. Between the previous session and our panel, there was a 15-minute break, so we took that time to gather ourselves up, get a drink or snack, and set ourselves up.
Above you can see some thumbnail pictures of us – click on them to go to the gallery page.
I was the first speaker; it went in order of myself, Corey Walker, Patricia George-Zwicker, Jackie McMillan, and Daniel Share-Strom.
So, on to what we spoke about.
My talk – of which you will find my script at the bottom of this post, both written out and in PDF form for downloading – focused on the fact that as verbal autistics, we’re made to feel: A) as though we’re not real autistics; and B) as though we’re still “broken”, because we aren’t real people either. I also talked about the flame wars that happen on the blogs of adult autistics, and what a number of them get thrown at them on Twitter. I mentioned burnout – and some of the results of burnout, which includes suicide. I, personally, have paid very little price for my advocacy thus far – but this blog has only been up for about 5 years and isn’t enormously active (except when something like this conference comes along), and I’ve only really been advocating in person for just over two years. It does make a difference.
I also in slides at the end referenced But You Don’t Look Sick(dot)Com, the Thinking Person’s Guide to Autism, and We Are Like Your Child as excellent resources – the former for information about invisible disabilities and what effect they have on people with them, and the latter two as autism resources that are focused on the views, thoughts, and posts of autistics themselves.
Then it was Corey’s turn. He told us about his journey to discovering he was autistic, and what that meant for him. He also talked a bit about what it meant that the government declined to fund CAP (which 4 of the 5 of us at the table worked quite hard on, including Corey), and then put $20 million ($1 million more than what CAP was asking for over 5 years) into two other initiatives, and how as an employee of AutismBC (he’s the Northern Regional Coordinator) he has to talk about those initiatives rather than the possibilities of CAP, because AutismBC supports those initiatives.
Patricia had a doll of Sesame Street’s Julia there, and her speech was brought to us by Bruno Hache’s friend (see beginning of post) and the number 5. (She mentioned in the Green Room that the “5” thing was a complete coincidence, but given it kept coming up, she decided to roll with it.) She told the room that she is “full of ‘ic'” – she’s dyslexic, dyspraxic, epileptic, and autistic. The first 5 that comes up is the phrase, “But you don’t look autistic.”
Autism doesn’t have a “look”. What the phrase tends to mean is that we aren’t doing the stereotypical behaviour of autistics – rocking, spinning around, flapping hands, or having a violent meltdown and throwing things everywhere or biting people. It’s a highly insulting phrase, because – like the whole “high/low functioning” dichotomy, it reduces us to stereotypes and if we aren’t presenting like those stereotypes, then we obviously don’t need any support or accomodations. (AKA – we’re not real autistics. But, you know, we’re not real people, either – all of our talks linked in to each other, building on each other for more impact.)
The next 5 was (if I’m recalling right) “You’re not like my child”. Again, if I’m recalling right, Patricia explained a bit of her childhood and that yes, in some ways she is definitely like the children of parents saying that. (I’m not entirely sure about this because this is something we’ve talked about semi-often, and the panel was over four days ago now.)
The 5 after that was the sobering statistic that the life expectancy of an autistic who makes it past 30-something is 54. Patricia turned 49 last month – 5 years away from that statistic. She spoke about things like suicidal ideation and burnout (again, if I’m remembering correctly – Patricia? Correct me if I’m wrong, please!).
Her final 5 were the words “Nothing About Us Without Us”. This is a rallying cry of the disability community, and it has been an autistic rallying cry for quite some time as well. We are affected by decisions made about autism and autistics – so we need a say in what is being decided as well. She pointed out the privilege that everyone in the room has. She also mentioned about how being around other autistics is like “autistic oxygen”, as she calls it. (I know there was a lot more to her talk, just as there was to Corey’s, and is to Jackie and Daniel’s that I can’t remember exactly – but it was recorded, and I will be linking to the recording as soon as I’m aware it’s up.)
Jackie’s talk focused on wounds, but physical and emotional, and the scars they can leave behind – and how destroyed hope leaves behind the nastiest, hardest to repair scars. She talked about how she’s spent decades working as an advocate, and how that damaged her willingness to trust and hope, because each time she was let down, whether by being tokenized or simply not being listened to. She explained that that was why she was so wary and guarded when we first met over CAPP – because she had experienced that kind of betrayal over and over again.
In a very emotional part of her speech, she told the room about how CASDA have given her back that hope. How CASDA is listening to us – whether over CAPP or in general – has proven to her that things can be changed. It’s been a long time coming, but the community is finally starting to listen to autistic voices, and there was clear emotion in her voice as she spoke on that.
Last but not least, by any means, was Daniel’s speech. He spoke a fair bit about the lack of understanding of autism, which is one reason why advocacy by autistics is so important, and about how divisions in the community is at least a part of the reason we tend to burn out. He also mentioned that, “I love the gifts of autism, but I fear being treated like you’re broken.”
What struck me most about his speech was a story he told us, about a workshop he did a few years ago. Daniel said there was a non-verbal autistic in his 40s in the audience, with his mother, and he appeared to not be listening to Daniel at all (neurotypical expectations of what listening looks like, there). After the end of the workshop, mother and son came up to Daniel. She held out a sheet of pictures, that her son used to communicate, and he pointed out what he wanted to say.
(Please note that I’m paraphrasing, here, but the gist is accurate.) Thank you for this, for explaining what it’s like to people. You are right about our experiences.
(For people who say we’re not like their children. This was a non-verbal autistic who wore diapers saying this to a verbal autistic who has a university degree and gives workshops. Their experience is similar enough that it resonates. Think about that. Please.)
In our moderator’s (Ally Garber) closing remarks, she ended up breaking down into tears – which was, of course, the signal for a group hug! (Note that I’m not terribly visible in the pictures because I was in the back.)
Oh, and also after our speeches, we got a standing ovation. 🙂
After that, we had time to answer two questions (the rest were saved, and were sent out to us last night to answer; those answers will being going up… probably on the CASDA facebook page).
The first question concerned how does one get started in advocacy. Our answers involved: Reading the blogs of other autistics (this was mine – that’s how I got started, after all!); Peer mentors and sharing your passions (Corey); Take time in getting comfortable with advocacy, it’s like the stages of growing up (Patricia); Read books by other autistics, and write more! (Jackie); Talk about autism – don’t hide it (Daniel).
The second question was from the mother of a non-verbal nine year old, who asked how she could make sure that she’s not overshadowing his voice with her own. The answer involved, in no particular order (and not all mentioned – again, see the recording when it is released): make sure he has access to AAC (Augmentative and Alternative Communication) systems – whether iPad, text to speech apps, image charts (as mentioned in Daniel’s speech), etc; paying attention to him and his comfort levels (I think)… and I’ve forgotten the others, sorry. Again, the recording will have it.
Following that, the sponsor closing remarks were by Tanya McLeod, the president of the Sinneave Family Foundation. She directly referenced Patricia’s speech at the beginning of hers, and Jackie’s at the very end. Colour me #ImpressedAndPleased!
From Conference Chair Debbie Irish in her closing remarks about our panel: “They were honest and they made us uncomfortable – that is success from my perspective. Make us pause and think, make us question what we believe, make us uncomfortable with the truth for then we might reach understanding. We can not apply our neurology and experience as the lens to judge success and understanding.
You make me uncomfortable and I thank you for that!!
Debbie Irish, CASDA Conference Chair”
After that, there were some photo shots (here’s one of the five of us, and one of us with new autistic friend Louise Tardif):
Then there were some people who wanted to chat with us for a bit, so that we ended up not leaving the conference centre until close to 5 o’clock, I think – the conference officially ended at 4!
After that, we gathered in the hotel lobby for a bit. We planned to go to the hotel restaurant for dinner and a debrief, the six of us, but someone came up to us just as we settled down on the chairs to wait for one of us to come down from their room (where they dropped most of their things). She introduced herself to us as the mother who had asked the second question, and we talked for a while longer about various things having to do with her son. Before we went in to dinner Jackie had to leave – she was getting seriously overloaded – so we hugged goodbye and the rest of us headed in for dinner.
We had a great time, talked about the conference and then a whole bunch of other stuff – that kind of thing seems to happen when I’m around other autistics. We get comfortable almost instantly and start chatting away about stuff, whether verbal or not. (Or we do a lot of deep pressure hugging – sensitivity to gentle touch was one of the topics that came up, which I know at least some about because another friend has that sensitivity.)
Picture of us Atlantic autistics at the dinner table:
We then got a lovely surprise when, during dessert for those who wanted it, a few members of the CASDA board came over (they’d come into the restaurant while we were eating our entrees) and informed us that they’d paid for our meal. Yes, a lovely surprise! (My outlay was remarkably small this conference….)
Then we headed up to our rooms, and Patricia and I chatted for a while (again) before crashing, about various stuff. 🙂
Woke up at 2:30 am Ottawa time – my alarm was set to go off at 3:30, so I could get down to the lobby for 4:30 and get a cab to the airport for my 6:40 flight (I get anxious about being on time for flights, and I needed a wheelchair for Ottawa and Halifax airports because the swelling in my feet hadn’t gone down). Corey and I had agreed to share a cab because his flight was leaving at 7. So I got down to the lobby, and about 2 minutes later the mother who’d asked the second question and spoken to us the previous night came down. Turned out that she was on Corey’s first flight, so we invited her to share a cab. And she very kindly paid for it!
So, I would say that overall, the conference was a success – and I got to meet some more lovely people whom I didn’t meet last year, and made a few new friends in the bargain!
Now, here is the basic text of my speech, first in the PDF attachment, and then written out in this post. (CW: Mention of othering, suicide, reasons for Disability Day of Mourning. Also NeuroTypical Syndrome.)
Just a word of warning: there are some things in this talk that will be difficult for you to listen to. I’m going to be blunt about a few things that are Not Comfortable.
To start off with, here’s a question: How many of you have driven with children in the car?
So, I want you to imagine this scenario for a bit. You’re driving the car down a main street, meaning lots of traffic and traffic lights. It’s snowing semi-heavily – not enough to declare a snow day, but enough that visibility is limited. And you have children in the back seat; children who – as children are wont to do – are yelling, “Mommy, mommy, she’s hitting me!” “Daddy, daddy, he won’t stop poking me!” Constantly, without stopping. Loudly.
For a lot of autistics, that intensity of stimulus is happening all the time. All day, every day. Maybe there are good days, where it’s like it isn’t snowing. And then there are bad days, when you’re stuck in the house because of a snow storm and you’re trying to handle meals and the children are going insane from being stuck inside and they’re yelling every ten minutes and you just don’t get a break.
You’ve heard examples like this before, I’m sure. If you haven’t, you definitely should have. This is the kind of sensory stimulation that we live with day in, day out. The kind where sometimes, you just have to hit something to try to control the input, or because you have a sense that isn’t producing that kind of stimulation and so it’s as though that sensory system doesn’t exist.
And then you put us in a room full of people – some of whom listen, but others of whom inform us that we’re broken. We’re not real people. But, you know, we can talk – or type – so we’re not really autistics, either. So no, we really have no idea what their child is like and it’s an insult that we point out that there are some elements of autism that can be positive, that can be strengths.
But of course, even if we’re not real autistics, we’re still broken. We don’t move like them, we don’t talk like them – if we can talk. We don’t react like them. We don’t make eye contact. We’re emotionless machines. We have no empathy. We fidget rather that focusing all our attention on whoever’s speaking. And so on, and so on.
Now imagine what it would be like if you were constantly being told that. All the time. Told that your neurology is a disease. (Trust me, there are a number of articles about the horrors of neurotypical syndrome floating around the autistic community.) That they know all about you, and anything you say contrary to that is obviously a lie. That if you’re playing with your hair or tapping your fingers while someone is talking, you aren’t listening. That you have to do things that physically hurt you because that’s how real people interact.
That parents killing their children who are just like you were at their age should be viewed with compassion. That they had such trials, and it was better for their child who is just like you were to die, because they obviously would have no quality of life.
How would you feel?
As Patricia so often reminds people, one of the strengths of the autistic neurotype is pattern recognition. We’re autistic. If people don’t object to autistics being killed because they are autistic and “difficult to handle”, what do you think we conclude about what people would think/feel/say if we were killed?
I’m lucky. My blog doesn’t get the sort of flame wars that happen on the blogs of more well-known (AKA mostly US) autistic advocates. I only really started being a full advocate with CAPP, just over 2 years ago. And I tend to read Twitter very carefully, mostly just looking at my notifications, in order to avoid some of the – honestly speaking, absolute filth that gets shoved at autistics on there. So I haven’t really experienced burning out of advocacy at this point. But I have what I call a blog circle, a number of whom haven’t posted in over a year… and a number of those have stopped because of advocacy burnout.
So what is one of the major prices of advocacy for autistics? Burnout. Being so wrung out from constantly having to defend ourselves, our lives, and our neurology to people who aren’t willing to listen – or who, even worse, tell us that we’re wrong. That we don’t know what we’re talking about. That they are the experts, and we should just shut up and get out of the way because we’re broken, and we’re also not real autistics.
And the consequences of burnout can be extreme – all the way up to suicide.
In conclusion, [show websites]
But You Don’t Look Sick.com. A site about invisible disabilities, mostly physical – but mental health issues and neurodiverse conditions fall under that umbrella as well. [If Patricia is on before, ref “but you don’t look autistic”.]
TPGA A major resource site; most of their articles are written by autistics.
We Are Like Your Child: I know of autistic advocates who as children were non-verbal, had violent meltdowns, had toilet training issues. And autism is a delay… it’s not a developmental stop. So yes. We are like your child.