Episode 4

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Published on:

16th Jun 2022

Autistic Resistance: The Foundations

Autistic advocate and academic Lulu Larcenciel sits down with host Jessa McLean to challenge misconceptions surrounding autism, discuss the need for massive shift in how we accommodate for neurodivergent community members, and take a critical look at so-called progressive policy that is impacting disabled people.

Lulu put together an amazing resource tool here:

Transcript
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Greetings, rabble rousers.

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My name is Jessa McLean and welcome

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to Blueprints for Disruption,

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a weekly discussion dedicated to

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amplifying activism across Turtle

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Island.

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Together, we will examine tactics,

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explore motivations, and celebrate

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successes in disrupting the status

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quo.

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This podcast is a proud part of

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new left media.

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We've labeled this episode Autistic

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Resistance the Foundations.

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It's an in-depth discussion with

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Lulu La Conceal, an autistic

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and disabled advocate, an

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academic that really doesn't sum

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up all the things that Lulu does.

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You're going to hear some sorely

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needed myth busting.

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It's going to be a critical look at

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so-called progressive policies that

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are negatively impacting disabled

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people.

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Lulu is going to help us all get out

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of the past in terms of what we

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think we know.

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Autistic and neurodivergent people

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need to thrive.

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It really is incredible what we can

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learn if we just listen.

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Welcome to Blueprints of Disruption.

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Lulu, I am so happy

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to have you on the show.

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You've been a wealth of knowledge

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for me for

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a few years now, and so I'm excited

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to share your voice with other

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people.

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Can you go ahead and please

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introduce yourself to everybody?

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Sure.

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So my name is

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Lulu Larcenciel.

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I am she her.

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I am an autistic

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and disabled

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advocate, activist

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and academic

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in currently

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living in St Catherine's at Brock

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University, studying

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young autistic people's wellbeing.

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And I have

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been a

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sort of political and social justice

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volunteer and

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advocate and member

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for quite some time.

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Also being queer, I also

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have a lot of sort

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of strange and exciting

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experiences from queer advocacy,

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although most of those are not not

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very novel and have been on many

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podcasts before.

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So probably I'll focus more on the

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disability angle, which

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I feel like really hasn't been

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represented that well in the past.

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Thank you, Lulu. I mean, that's

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definitely been my experience

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organizing on the left.

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I've never seen a group

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as a so-called equity seeking

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group marginalized more

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than the disabled community.

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It's it's

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shocking to see on the left.

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I would say.

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Yeah, it's not so much of

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like a comparative thing either.

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Right?

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And it's I mean, I think,

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you know, being queer,

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being a woman, all of the groups

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that I am a part of have been

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horribly,

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you know, prejudiced and

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up against and and oppressed.

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But I think it's

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it's it's a kind of hypocrisy

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where.

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The same behavior

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or similar behavior

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on the part of politicians

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towards disabled people

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that they absolutely

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revile in other politicians.

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When those politicians do that

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to women or whatever

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other group.

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And I do think that

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that is quite an interesting

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phenomenon.

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But I I'm not

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I'm not big on the comparisons

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because then you can sometimes get

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into sort of conflating

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different kinds of problems, you

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know, black autistic people

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face.

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Mountains.

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Exponentially more violence

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than white autistic people,

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for example.

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And even within our party,

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you know, within various

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political structures, within

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academic institutions,

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even within,

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you know, most aspects of

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society.

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And it

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again and I'm sure

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you talk about intersectionality

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and, you know, every interview

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you have, I'm sure.

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And that's important because.

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Yeah, it is it is 100%

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true that disabled people are

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marginalized and pushed

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aside in left

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circles in a way that is just

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completely absurd.

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And it's it's contradictory to

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everything that those those left

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circles

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say that they're standing for and

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say that they're

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fighting for.

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And then to turn around and and

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sort of do the opposite to the

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disabled folks in their midst.

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It's it is startling how common

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it is.

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Absolutely.

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I understand you're kind of checking

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me there on the comparison.

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I do appreciate that, because you're

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100% right.

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It's just yeah, it's just I expect

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better, you know, when you see,

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you know, abled people chairing

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the disabled committee,

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you wouldn't see that otherwise.

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So, yeah,

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it is very interesting.

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I can't imagine an organization

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which is committed to social

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justice and anti oppression,

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you know, hiring a man

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to be the

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women's coordinator.

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But you will find someone who's not

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disabled as an accessibility

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coordinator.

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And I don't understand how that

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happens.

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I don't understand how that's not an

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actual expert on

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disability, an actual disabled

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person being put in that role, but

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just a non-disabled

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person who's getting that tacked on

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to their other job

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as though it's just, you know, some

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other task, as though it's not a

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critical tool

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to ensure that,

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you know, a fifth of

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the population has access to your

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organization.

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Yeah, you frame it as like a

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dismissal of its importance.

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It's true. I thought of

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the paternalism that goes into

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that thinking that,

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you know, if even if they thought it

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was critical, it could not be left

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to disabled folks to do.

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Very interesting conversations that

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go on about, you

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know, whether whether disabled

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people are capable.

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And this is something

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this is something which is used

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as an excuse across systems.

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Right. This is an excuse that's used

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to deny people

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accommodations.

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If you already seem like you're

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capable of doing something, even if

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you're disabled and you're saying,

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hey, I need this accommodation,

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you know, it's it's used to

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to kind of mock people.

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It's used to to kind of try and

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drag someone down when they ask for

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something and say, oh, well, if you

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can't do this without it

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and really try to make you feel bad

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about it and

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it's unfortunately,

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yeah, it really does lead people to

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these bizarre

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and incredibly cruel opinions

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and suggestions that disabled

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folks aren't capable of

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moderating our own spaces

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and deciding

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what accessibility is necessary

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that has to go through non-disabled

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gatekeepers in every

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organization I've ever been part of,

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which is horrifying.

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It's just disturbing.

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You you listed

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a bunch of A's when you introduced

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yourself. You're an academic, you're

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an advocate, you're an activist,

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but you're autistic.

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If you don't mind, I would like to

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focus on that because

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and the comment that you made

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earlier about capacity

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and misconceptions.

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So you seemingly, you know, you

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listed a whole bunch of things that

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you do. I know you left off a

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lot of stuff because we're going to

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have to talk about the end and end

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up later.

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And so you do

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a lot you're breaking

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misconceptions about people with

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autism, right?

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There are.

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Autistic people.

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Autistic people think

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what what other misconceptions

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are people holding, especially

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on the left, you know,

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comments that, you know, we'll be

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listening about autistic

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people.

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And particularly

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their ability to advocate.

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Yeah.

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Um, so

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this is an interesting and

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especially that last sort of part of

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the question about advocating

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because, yeah, I'm artistic,

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I'm a

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queer.

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Artistic who was

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like, who? And I'm closest this

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woman.

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And among

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autistic people,

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women are.

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Horrifically underdiagnosed.

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And this has led to one

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huge conception and

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misconception, which is

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a lot of people still believe.

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Yeah. No, this is also true on the

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left. I was just checking in my

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brain.

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Yeah. A lot of people believe that

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autism is a boy's

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thing.

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This is a stereotype

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which has been true for quite some

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time.

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Across cultures,

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they have this stereotype across

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and this is partially due to

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some really flawed research that

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came out quite early on,

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which called autism

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a male brain disorder,

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which, yeah, it was

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just silly, quite frankly.

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It was just a really silly theory.

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It's been disproven a number of

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times, but this this

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myth persists.

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And the reason that I use that one

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first is just because it's a really

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easy obvious.

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Myth.

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It's very clearly a piece of

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misinformation that that

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that there are more autistic

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boys than girls.

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But this is something people believe

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wholeheartedly.

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And, you know, research over the

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last ten years all contradicts

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that and says that girls

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have been wildly underdiagnosed

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and wildly under-recognised

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as autistic girls have

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gone without accommodations,

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without recognition,

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and they've ended up in severe

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mental distress.

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They've ended up with depression,

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they've ended up suicidal.

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Many of them are no longer with us.

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A horrifying study was recently

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revealed right here

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in Ontario from 2010 to

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2016.

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Autistic people were six times

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more likely to die than

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non-autistic people with

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other matching

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demographics.

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That mortality rate doesn't

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come out of thin air,

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and a lot of it is due to

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misconceptions that lead to

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autistic people going unrecognized

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and accommodated.

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And the reason that I really focus

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on that is that.

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The way people conceptualize

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autism right now

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is.

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Based on all of these different

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myths, and they're sort of piecing

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these different stereotypes and

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myths and things they've seen in

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sensationalized movies and

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things they've heard from, you know,

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their their neighbors

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brothers got a kid

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who's autistic.

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And so they know from hearing about

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that.

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And that doesn't actually result

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in knowledge, right?

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That doesn't actually result in

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understanding a situation,

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especially something as complicated

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as the human brain, which is

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where autism, you know,

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is located.

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Autism is the way that a brain is

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wired. It's it's the way that a

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brain and nervous system

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are connected to each

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other and the way that the nervous

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system interacts with the world

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around it.

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My cat is just

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causing some trouble, so I just have

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to get him settled so that I can

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make sure he's not going.

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Are you going to just chill or.

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This isn't just any cat, by the way.

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This cat has been immortalized on

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fridge magnets around

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around the globe.

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Sure.

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Yeah. I mean, another thing about

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autism is a

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trait of being autistic is

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when you like something

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are just going

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ahead and letting yourself like it.

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And one of the things I really like

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is cats.

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And my cat is the best cat.

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As any cat owner knows,

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your cat is the best cat.

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That's just science.

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That's how that works.

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And yeah, I definitely

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also love making buttons

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again, thanks to advocacy.

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But I got a button maker for

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as a graduation present,

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and so I have definitely made

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buttons and magnets of my cat

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and sent them

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all over the world, actually, not

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even just all over Canada.

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So

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we have one on my fridge.

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I got my daughter playing with it

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the other day. I'm like, Oh, that's

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good. He goes up top,

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he's got a cab along the bottom.

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But yeah,

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you talked about accommodations,

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right? And I think

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right now when we think

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of dealing

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with autistic people, I

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say it because I feel like that's

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how people look at it, not because

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they're thinking of accommodations,

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but what they're using right now is

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a lot of ABA therapy, right?

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If you're in the NDP, you're getting

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talking points.

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How important this therapy is

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and it's

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a large basis of

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our funding model

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is that how we should be

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accommodating? Is are these the kind

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of I know your answer, obviously,

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but what's up with that?

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I mean, why is it so focused

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on that and not actually

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accommodations?

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Yeah, this is

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an excellent question.

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And, you know,

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I, I think it's actually

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also a good point to put

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the question in because it really is

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a fundamental part of how people

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misunderstand autism and

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autistic people.

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A lot of people will see me

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doing advocacy.

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They'll see me on,

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you know, the last few years.

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The only reason I've been able to be

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so successful is the last few years

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we've all been doing

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things remotely. And so I've been

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able to do things from my own house,

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and that's where most of my

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accommodations are in

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my house when I have to leave my

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house and and I have to, you know,

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pack the accommodations I can take

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to go

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in. Normally, I end up

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not being able to do as much stuff

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and not being able to.

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You know, you said at the beginning,

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I do a lot.

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I do much less

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when I have to do it without all

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of my accommodations.

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And

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the reason that

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all of these accommodations are so

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helpful to me now I've got things

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like stim toys, which

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are just little.

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I've got, for example, a little

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3D printed worm

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that kind of click says as you

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as you wiggle it along.

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And this is something that I can

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hold in my hands while I'm having a

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serious political meeting and

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I can feel the way that

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this is.

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It's a little bit stronger of a like

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a stripey kind of plastic

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if you've ever held on to like a 3D

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printed thing before, you know,

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there's like a grain to it.

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And so I can feel that grain and I

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can feel the way that the different

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interlocking parts of this thing are

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moving. And I can process

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that and I can hear this distinct

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little clicky noise that it makes.

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And I can do all of that while

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I'm in a meeting so that my

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sensory system, which needs a

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serious amount of input at all

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times, is regulated.

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And that means I can actually

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process what that politician's

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saying and then I can respond

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to them with the information that is

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there in my brain ready to respond

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to. Now, if I'm sitting in a

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meeting room and there's flickering

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lights which are giving me a crazy

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headache and my eyes hurt

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and everything's way too bright in

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there, and it's actually kind of

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cold and I'm sitting on this chair

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that is just I cannot sit

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comfortably in and because of

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professionalism, I can't put my feet

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up on the chair and I can't cross my

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legs.

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So I can't have that sensory input

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either. And I can't be fidgeting

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with something and I can't have

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anything in my hands.

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And I have to be looking at this

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person's face in front of me

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and I have to be monitoring my own

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facial expression and I have

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to be doing all of these things.

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I don't have the energy left to

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listen to what they're saying.

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I don't have the energy left to come

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up with something to respond with

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because my brain is too busy

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processing all of this sensory

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information with absolutely no

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regulating tools.

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And the reason that I explain it

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this way is because

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I could be explaining a political

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meeting that I took part in as

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part of a writing executive,

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or I could be explaining

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math class

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when I was eight.

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And they're both the exact same.

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Exactly the same.

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Autistic people are human beings.

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When we grow up,

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we actually have mostly

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the same needs

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and we actually go

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through the world as unique

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individuals.

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And that means problems that we have

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as kids are going to persist

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as adults.

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Now, a lot of people's solution,

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like you say to the problem,

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a lot of people's solution

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to having to deal with autistic

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kids is.

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Yeah, right now behavioral

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intervention.

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And so this means that

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when a child is unable to

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sit still in

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the lights without

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playing with anything

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and pay attention and look in their

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teacher's eyeballs,

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they are having bad behavior.

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They're having problematic

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behavior.

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And so they are referred

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to behavioral intervention

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to change their external behavior.

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Now, some of this behavioral

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intervention starts with like

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a behavioral

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assessment

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where they try to pin

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the cause down on

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a narrow little

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list and then they

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try to change the behavior.

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And so they they

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show the kid the behavior they want

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to see, and

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then they tell the kid it's their

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turn. And if the kid does the

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behavior.

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Sit still.

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I sit still.

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Look at me in the eyes, talk

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out loud, say this exact word back

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to me, point to this thing,

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whatever else, put this thing on

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that's uncomfortable for you,

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You know, whatever it is,

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interrupt what you're doing to wave

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at this stranger, whatever

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it is.

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And these are all the

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more benign ones.

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To be honest, there are much worse.

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You know, and then if the kid

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does it, then

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they get a lot of praise

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and positive feedback and a lot of

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the time, like stickers or candies

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or they get to play with their

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favorite toy or

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they get to have their comfort item

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or whatever else.

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And then if they

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do it wrong, then they

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get told to do it again.

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Positively with a big smile.

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They get told to do it again.

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Why is that bad, Lulu?

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You know, a lot of parents would

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hear that and go, Yeah,

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I do a form of that kind

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of. Absolutely.

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You know, absolutely.

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I got my kid inside with an M&M

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yesterday.

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So the problem is.

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There is a reason.

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That autistic children.

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Need accommodations.

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Autistic people are

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wired differently.

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Our bodies and brains react to

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the world around us differently

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than non-autistic people.

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Behavior interventions.

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Goals

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are based on non

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people.

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These are goals that

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are based on

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what non autistic

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people are

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expected to and

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normally able

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to do without thinking.

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Even things like.

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Like making eye contact,

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for example.

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But for an autistic kid,

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something like sitting still

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without playing with something

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or making eye contact with somebody

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is painful.

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Now, here's the other thing.

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Another misconception is that

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autistic kids reacting to sensory

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stuff is because they don't like

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it.

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This is phrasing that's used

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or that they're scared of

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it. People will say, Oh, my child is

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scared of the vacuum cleaner

Speaker:

because she covers her ears every

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time I turn it on.

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And that's not fear.

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Maybe that becomes fear

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of sensory pain,

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But sensory pain is not dislike.

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It's not fear when you're

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overloaded in one of your

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senses.

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It feels as though you

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are going to burst

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when I have to, like, go

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outside into a bright sun,

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sunny day with no sunglasses

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on. It's not that I'm kind

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of uncomfortable.

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It's that I'm in pain.

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It hurts.

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And what happens when we reduce that

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to behavior,

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when we say, oh, no.

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Well, the external behavior.

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Oh, she's she she

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screams and hides when we take her

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outside in the sunshine.

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We have to teach her to stand still

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in the sunshine.

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We have to teach her to stand here

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like the other kids are standing.

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So we're going to

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we're going to enforce her.

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Until she does that, until she just

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stands here like the other kids are

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standing.

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And then you've got

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a little kid who's in pain

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and who's not telling you she's in

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pain because she doesn't know how to

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describe that and

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who's not able to go anywhere

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because they've prevented her from

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going anywhere and hiding.

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And she's not able to do anything to

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escape the sensory pain.

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And she's also not allowed to

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acknowledge that sensory pain out

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loud.

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I don't know who might believe

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that sensory pain is going to

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disappear because of that,

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because what actually happens is it

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builds up inside of

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that person.

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And autistic people have so

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much sensory

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pain and emotional overwhelm

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and informational overwhelm

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and change, overwhelm

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going on inside of our brains and

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bodies at all times

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that what inevitably happens

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is the dam bursts

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and we have

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serious distress

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because of that, because we are

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completely overloaded.

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And again,

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people want to treat that

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behaviorally.

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People want to say that

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an autistic child who has

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been stressed and overwhelmed

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all day by the sensory

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hell that is our public

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school system.

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Has been absolutely

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decimated by the lights and

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the screaming of the other kids

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and having to look up from the work

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that they just want to be doing all

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day long and then getting

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in.

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Trouble for fidgeting.

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Getting in trouble for fidgeting,

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having to try and hold yourself

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still.

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And then they get home.

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Of course, they're going to cry.

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Of course, they're going to need to

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release that pent up energy because

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we pushed them down all

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day long and then we

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expected them not to come back

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up into their their human form.

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These are people.

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Children are people.

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And it really seems like folks

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forget that these behavior folks,

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because children are not a series of

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behaviors.

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They're human beings.

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And that's not acknowledged

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in behavioral approaches.

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It's really not.

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And, you know,

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behavioral conditioning has a

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absolutely.

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Of a history,

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you know, and they talk about the

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evidence behind behavioral

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conditioning. And, yeah, let's draw

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it to its root, which is,

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you know, conversion therapy,

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the root of behavioral

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analysis.

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Love is and his team

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his team was also foundational

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in queer conversion therapy

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because that was a behavior they

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didn't like.

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And just the same way that queer

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conversion therapy,

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I shouldn't even call it therapy,

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but queer conversion practices

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the attempt to change a

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queer person's behaviors

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so they won't be queer any more, an

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attempt to convince a person

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through that, through

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behaviorally controlling them,

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that that they're not queer anymore.

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You know, we've also got

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autistic conversion practices, ABA

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and behavioral conditioning and

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behavioral intervention.

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And these are practices

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that aim to make autistic people

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act like we're

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not autistic. And that doesn't just

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mean we're they're trying to make

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us make eye contact.

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It means they're trying to make us

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act as though we are not

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experiencing the world

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the way that we are.

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When you're in sensory overload, you

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can act like you're not in sensory

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overload, and that doesn't change

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for a second. The fact that that's

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what you are experiencing

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and after a while that

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adds up Again.

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There are really horrifying studies

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showing that autistic people are

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considerably more likely to die

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young, not just by

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things like random

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unexplained heart

Speaker:

conditions, but

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also one

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of our highest killers

Speaker:

is suicide.

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And when we've asked autistic people

Speaker:

in research why, why

Speaker:

are so many of you suicidal?

Speaker:

What autistic people have

Speaker:

answered with is I am expected

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to act like somebody else

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all the time.

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I can't do it.

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I'm burnt out.

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I'm tired.

Speaker:

I don't want to live here

Speaker:

if I have to act like someone else.

Speaker:

And we know this research has turned

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this up countless times

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and.

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Will be called masking Lulu.

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It is. It is.

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This is commonly called masking

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in autistic communities.

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The the act of having to cover

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yourself up and present a version

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of yourself that isn't autistic,

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that isn't quite you, that isn't

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authentic.

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And a lot of people look at this and

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they say, Hey, I have to do that

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too,

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for work, or I have

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to do that when I'm around people

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that don't like me or whatever else.

Speaker:

And the reason that I, I, you

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know, didn't

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open by just trying to

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explain it as as, you

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know, covering yourself up is

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because it's it's.

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An attempt to make us change

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from the outside in

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and society.

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The education systems

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psychology these.

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Institutions

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have tried really hard to

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make autistic people not autistic

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anymore from the outside, in

Speaker:

the same worldwide institution

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that certifies the

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certified behavioral

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specialists in Ontario.

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That same international institution

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also certifies the behavior analysts

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at the Judge Rotenberg Center in

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the States who are currently

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administering electric shocks to

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autistic children, mostly

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black and brown children

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who were never given the chance

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to develop any accommodations or

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any other type of of

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life, and instead are in an

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institution getting electric

Speaker:

shocks for their behavior

Speaker:

because that institution can't see

Speaker:

past behavior.

Speaker:

And this is why anyone

Speaker:

who's offering behaviorism and

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behavioral intervention as a

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solution for autism is

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dangerous.

Speaker:

That's someone who doesn't

Speaker:

understand what autism is and what

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autistic people need.

Speaker:

I'm going to give you another chance

Speaker:

to smash a misconception.

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Yeah, one that I admittedly

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needed to hear about,

Speaker:

and that's non-speaking autistic

Speaker:

people.

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So a lot of the pushback

Speaker:

that I would hear

Speaker:

in terms of ABA

Speaker:

and self-advocacy

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is that if basically

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folks who can't speak,

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can't advocate for themselves, and

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so you and

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other autistic people

Speaker:

who do.

Speaker:

Verbally communicate

Speaker:

or speaking over them.

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And, you know, only their

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caregivers really can

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speak to their lived experience.

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Yeah.

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So let me tell you, this

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is actually this

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is a very common you're right.

Speaker:

Another common misconception.

Speaker:

And this is actually

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something where I do believe a lot

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of people need to grow their

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understanding.

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And this was true for myself as

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well. I'm autistic.

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My big brother is also autistic.

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My big brother was one of the first

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folks that was in

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Voices who

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in Ozzy's original

Speaker:

studies, when they realized autistic

Speaker:

people could also be gifted.

Speaker:

And both me and my brother are

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Obviously I'm as I'm speaking.

Speaker:

The reason that's obvious is because

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we don't have enough funding in

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alternative communication to have

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voices that actually

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modulate the way mine does yet,

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which is very unfortunate and

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something I'll get into.

Speaker:

But yeah,

Speaker:

and this is something that even I

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believed for a little while, which

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is that, you know, not

Speaker:

non-speaking autistics,

Speaker:

they can't add to

Speaker:

the conversation themselves.

Speaker:

And so we have to listen to

Speaker:

the, the, the broadly

Speaker:

non-autistic parents around them.

Speaker:

And that's that's who knows best.

Speaker:

But that opinion of

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that I also used to hold

Speaker:

got smashed pretty quickly when

Speaker:

I met non-speaking autistic

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people myself.

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And this is something that like,

Speaker:

you know, growing up,

Speaker:

I grew up in the same society

Speaker:

as the rest of you, where we devalue

Speaker:

disabled people, we

Speaker:

seriously devalue

Speaker:

disabled people who have been

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labeled with things like severe

Speaker:

and low functioning

Speaker:

and profoundly disabled.

Speaker:

We immediately, as a

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society, we decide

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that life must be terrible,

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that must be a low

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down life because of those

Speaker:

labels. Those labels do something

Speaker:

to us. They impact how we feel

Speaker:

about the people they are used for.

Speaker:

And those are labels frequently

Speaker:

used for non-speaking autistic

Speaker:

people.

Speaker:

And that really gets in your head,

Speaker:

however.

Speaker:

Non-speaking autistic advocates

Speaker:

are absolutely

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rocking

Speaker:

the advocacy world and the

Speaker:

world in general right now.

Speaker:

I'm at

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the time of recording

Speaker:

this in the last week,

Speaker:

actually.

Speaker:

But maybe I'll just say recently,

Speaker:

recently a a

Speaker:

clip went viral

Speaker:

of Elizabeth Parker,

Speaker:

who is a non-speaking autistic

Speaker:

girl in the United

Speaker:

States who

Speaker:

was valedictorian of her class

Speaker:

this year and for her graduating

Speaker:

class in her her graduation speech,

Speaker:

which was delivered

Speaker:

by an AC

Speaker:

device, which is an alternative

Speaker:

and augmentative communication

Speaker:

device.

Speaker:

Her speech went viral and a lot of

Speaker:

people got to see it, and it

Speaker:

challenged a lot of people.

Speaker:

People really do not expect

Speaker:

a non-speaking autistic

Speaker:

person to have

Speaker:

competence.

Speaker:

And this is what non-speaking

Speaker:

advocates.

Speaker:

The very first lesson that I learned

Speaker:

from non-speaking autistic

Speaker:

advocates.

Speaker:

And this is folks like

Speaker:

Kal montgomery.

Speaker:

The very first lesson

Speaker:

is presume competence.

Speaker:

And this is something that we fail

Speaker:

to do as a society.

Speaker:

We fail to presume competence

Speaker:

in non-speaking autistics.

Speaker:

And what that leads to and

Speaker:

what that falls from

Speaker:

is these behavior ideas.

Speaker:

Because what non-speaking folks want

Speaker:

us to know

Speaker:

is that non-speaking

Speaker:

does not equal non thinking.

Speaker:

And it does not equal incapable.

Speaker:

But people do have this in their

Speaker:

heads that a non-speaking autistic

Speaker:

person doesn't

Speaker:

have mental capacity.

Speaker:

Or this other one, which is very

Speaker:

common, which is mental age.

Speaker:

People will say, Oh yeah, my oh,

Speaker:

my brother is 18, but he has the

Speaker:

mental age of eight or.

Speaker:

Whatever, mental capacity or.

Speaker:

Mental capacity of a six

Speaker:

year old.

Speaker:

And look,

Speaker:

these people are repeating what they

Speaker:

have been told by a

Speaker:

supposed medical professional.

Speaker:

The problem is that it matters

Speaker:

how they determined

Speaker:

that.

Speaker:

It matters how they decided.

Speaker:

This guy has a low IQ.

Speaker:

I don't know.

Speaker:

A lot of people are not

Speaker:

aware of this,

Speaker:

but IQ tests

Speaker:

are actually

Speaker:

entirely dependent on

Speaker:

motor capacity

Speaker:

and your motor coordination

Speaker:

because you need to be able to,

Speaker:

especially as a child, for

Speaker:

a child's IQ test,

Speaker:

you need to be able to point

Speaker:

to the word that the person said

Speaker:

or you need to be able to.

Speaker:

And I.

Speaker:

Right.

Speaker:

A particular word

Speaker:

or you might need to speak

Speaker:

out loud and repeat a

Speaker:

particular word or spell

Speaker:

a word out loud with your

Speaker:

with your voice.

Speaker:

And all of those are motor tasks.

Speaker:

Actually, those those

Speaker:

don't actually determine whether

Speaker:

somebody knows that thing.

Speaker:

It just determines whether they can

Speaker:

do the motor task to prove to you

Speaker:

that they know the thing.

Speaker:

Now, it's pretty basic and

Speaker:

obvious when when we lay it

Speaker:

out that way that these IQ tests

Speaker:

are not doing a good job

Speaker:

at measuring capacity,

Speaker:

they're just doing a good job at

Speaker:

measuring motor function.

Speaker:

And unfortunately, what that leads

Speaker:

to is people thinking that non

Speaker:

speakers are incapable.

Speaker:

I have a good friend

Speaker:

here in Ontario, an advocate who

Speaker:

works with the International

Speaker:

Association for Spelling

Speaker:

as Communication.

Speaker:

His name is William Tavares.

Speaker:

And William

Speaker:

grew up here in Ontario.

Speaker:

He's he's

Speaker:

he's only just starting high school

Speaker:

now.

Speaker:

And he grew up in behavior

Speaker:

classes and behavior programs

Speaker:

because he didn't speak,

Speaker:

because he didn't talk and because

Speaker:

when he was overwhelmed, he screamed

Speaker:

and hit and flailed his arms

Speaker:

and tried to get away from

Speaker:

the thing that was hurting him.

Speaker:

But nobody ever asked what

Speaker:

in this room is hurting you?

Speaker:

Before he could speak, before he had

Speaker:

a communication device.

Speaker:

Nobody went and brought him into

Speaker:

the room and pointed out different

Speaker:

parts of it and said, Is that

Speaker:

overwhelming to you?

Speaker:

Is that too much?

Speaker:

And let him give an affirmative

Speaker:

or negative answer that was never

Speaker:

provided.

Speaker:

What was provided was behavioral

Speaker:

intervention to change how he

Speaker:

was reacting to those stimulus

Speaker:

and how he was reacting to

Speaker:

not being able to share his opinions

Speaker:

and his feelings and his needs

Speaker:

because he didn't have a form of

Speaker:

communication.

Speaker:

Now, when William did get access

Speaker:

to communication and

Speaker:

this happens right now,

Speaker:

unfortunately, pretty much by luck,

Speaker:

when parents allow

Speaker:

themselves to be exposed to

Speaker:

other autistic advocates

Speaker:

and when parents allow themselves to

Speaker:

be exposed to non

Speaker:

speakers who have developed systems

Speaker:

of communication.

Speaker:

But when William was able to

Speaker:

access communication, he uses

Speaker:

spellings to communicate, which

Speaker:

means he has

Speaker:

managed to get enough motor training

Speaker:

so that he can spell words

Speaker:

out on a letter board

Speaker:

and his communication

Speaker:

partner goes ahead and writes

Speaker:

that down

Speaker:

or says it out loud.

Speaker:

If he's on a call

Speaker:

and this is a valid form

Speaker:

of communication.

Speaker:

Since finding that communication,

Speaker:

William's doing normal school

Speaker:

classes, he's able to actually

Speaker:

do the kind of work that is up

Speaker:

to his his the caliber

Speaker:

of his brain.

Speaker:

And a few years ago, he was still

Speaker:

getting toddler books read to him

Speaker:

because he wasn't able to outloud

Speaker:

read them back to the teacher

Speaker:

just over and over again

Speaker:

because they thought that repetition

Speaker:

was going to teach him, because

Speaker:

that's how behavior works.

Speaker:

When you do a behavior over and over

Speaker:

and over again, eventually

Speaker:

you're supposed to learn that that's

Speaker:

that's the right way of doing

Speaker:

things.

Speaker:

But unfortunately,

Speaker:

apraxia and dyspraxia

Speaker:

and other motor connection

Speaker:

coordination conditions

Speaker:

like William and a lot of non

Speaker:

speakers have aren't

Speaker:

behaviors, they're not

Speaker:

behavioral.

Speaker:

That's an actual physical

Speaker:

motor problem with the way that

Speaker:

the brain is sending signals.

Speaker:

And that's something that can be

Speaker:

worked through, but not by a

Speaker:

behavioral interventionist and

Speaker:

not by repetition.

Speaker:

You need an actual physical

Speaker:

therapist or a physio

Speaker:

or sometimes an occupational

Speaker:

therapist, but only if they've been

Speaker:

trained in kinesiology

Speaker:

because that's a motor problem.

Speaker:

That's a problem of the actual

Speaker:

physical connections.

Speaker:

But if non-speaking

Speaker:

kids are put into these behavioral

Speaker:

programs and

Speaker:

yeah, every once in a while they,

Speaker:

they learn how to perform a

Speaker:

behavior.

Speaker:

Absolutely.

Speaker:

Sometimes you can

Speaker:

hear stories from non speakers

Speaker:

who will talk about

Speaker:

behaviors and actions

Speaker:

that they learned how to perform

Speaker:

even though they weren't feeling

Speaker:

that way. And even though that's not

Speaker:

what they wanted to say

Speaker:

because they would get treated

Speaker:

better if they performed it.

Speaker:

And like, if that sounds cruel to

Speaker:

you, then it is because these are

Speaker:

children we're talking about,

Speaker:

not employees,

Speaker:

we're talking about children.

Speaker:

And these standards are imposed on

Speaker:

them. You know.

Speaker:

I think like when anybody looks at

Speaker:

it from even if they

Speaker:

can't understand autistic people,

Speaker:

I think a lot of people's empathy

Speaker:

rides, unfortunately, on being able

Speaker:

to understand why someone would be

Speaker:

upset by lights when they cannot

Speaker:

fathom that, you know, or

Speaker:

and so it stops like there's no

Speaker:

level of there's no attempt

Speaker:

to kind of, yeah, provide

Speaker:

accommodation or empathy without

Speaker:

fully understanding

Speaker:

why it seems so unreasonable.

Speaker:

Like when we see meltdowns and and

Speaker:

you know what I mean? Like that's

Speaker:

just seen as bad behavior often

Speaker:

and

Speaker:

it's just yeah, I,

Speaker:

I do appreciate you kind of doing so

Speaker:

much work in breaking

Speaker:

these stigmas and,

Speaker:

you know, trying to show people what

Speaker:

actual accommodation looks like,

Speaker:

what access to communication

Speaker:

looks like.

Speaker:

It's not all the same for everybody.

Speaker:

Yeah.

Speaker:

I want to just say I really

Speaker:

appreciate you bringing that up

Speaker:

because one of the one of the ways

Speaker:

that this kind of misinformation and

Speaker:

these kind of stigmas are

Speaker:

being perpetuated is that folks

Speaker:

aren't hearing these messages.

Speaker:

They're not hearing from the people

Speaker:

who are actually most impacted like

Speaker:

non speakers.

Speaker:

You know, the work that I do is is

Speaker:

all 100% informed by the

Speaker:

non-speaking autistic leaders

Speaker:

that I'm following.

Speaker:

I'm not you

Speaker:

know, I'm a I didn't

Speaker:

learn any of this by myself.

Speaker:

This comes from.

Speaker:

Folks that are living through

Speaker:

absolute hell because our society

Speaker:

believes that being non-speaking

Speaker:

is some kind of challenging

Speaker:

behavior.

Speaker:

And one of the things that

Speaker:

I've learned is, you

Speaker:

know, I promise I'll talk

Speaker:

more about advocacy in politics.

Speaker:

But as as

Speaker:

a researcher and as a

Speaker:

teacher and a student

Speaker:

at this time, I've actually been

Speaker:

really startled.

Speaker:

I did a I did a guest lecture

Speaker:

in a fourth

Speaker:

year like final year.

Speaker:

Disability studies are

Speaker:

a child and youth studies class.

Speaker:

And it was like the disability

Speaker:

issues class for senior child

Speaker:

and youth studies undergrads.

Speaker:

And I did a guest lecture and I

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talked about how autistic kids

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experience the world.

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And I had a little

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chart that had, you know, the

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behavior on one side and then the

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experience on the other side.

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And so the behavior might

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be, I

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can't sit still.

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And then the experience

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might be I feel like there's

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electricity going up and down my

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legs. And if I don't run to get

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it out, then I can't

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think about anything else.

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I feel like pain in my legs.

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I'm cramping up now.

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What am I supposed to do?

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And I made this little chart and to

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me that seems these things seemed

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obvious, right?

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Because I might just say this is how

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I experience the world.

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But to those students,

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to those child and youth studies

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students who are in their final

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year, I had someone put up her hand

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and say specifically,

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I just want to say I've never

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thought about it like that.

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And that's horrifying to me that

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for years through child abuse

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studies, the children have not been

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ask to the students have not been

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asked.

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How do you think the kid is

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experiencing this situation?

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They haven't sat down and thought

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about it, and I really that

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makes me worry.

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And I think that's the same problem

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in politics, is that these

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people have never sat

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and thought about, oh, how

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might this experience be for

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someone who has a different

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brain than me, who has a different

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nervous system, whose body reacts

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to external stimulus differently

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than mine.

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And it's really hard sometimes to

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put yourself in someone else's shoes

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when you've never

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had the opportunity to hear from

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from people like that who've

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you've never had access to the

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resources.

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So I don't I don't blame people that

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don't have access to the resources.

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But once you've been given those

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resources and once you've been told

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these children are not being

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naughty, they're in pain

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and they need accommodations, and

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you still say

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no, it's just a behavior problem.

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That's cruelty, because

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children are people, which is

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something I shouldn't have to keep

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reminding politicians, but I do.

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People being able to communicate

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like their experience.

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Does it come naturally, though, to

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especially when they're not

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diagnosed?

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Part of the reason there's such a

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huge phenomenon of missed

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diagnosis

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and this is not just women and

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trans folks.

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This is also black kids

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and indigenous kids and Asian

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kids and

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Latin American kids.

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This is literally all over the

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place.

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The the sort of assessment

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criteria

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for for autism.

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Is very much focused on

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the white,

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upper middle class boys,

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little boys that they were studying

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at the time when they developed that

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criteria.

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The actual criteria, like the

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exclusion criteria for

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the studies that they did to form

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autism assessment criteria,

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the exclusion criteria mandated

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that only boys were included.

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So there's actually

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there's like.

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Millions of autistic people

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all over the world who are

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unrecognized and unacknowledged

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and trying to live through this

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world which is designed not just

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not for us, but actively

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against us.

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A lot of the time

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and when you're not diagnosed,

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you think you're just weak.

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You think you're just not doing

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things well enough.

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I'm 100% sure that people are going

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to listen to this podcast and

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they're going to hear these traits

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that I'm talking about and they're

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going to hear the way that the world

Speaker:

is experienced by autistics and

Speaker:

they're going to say, Wait a minute.

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Everybody doesn't feel that way.

Speaker:

Everybody doesn't go through crisis

Speaker:

because they are they are made to

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look in people's eyeballs.

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Maybe I might be autistic.

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And that happens every time

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I speak publicly.

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Someone comes up to me afterwards

Speaker:

and says, I have been miserable

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because I thought I was broken.

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And it turns out I'm autistic.

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And now I don't know what to do.

Speaker:

And normally the reason you

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don't know what to do is because,

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yeah, you don't have the

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terminology.

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You don't know how the systems work.

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You don't know how the sensory

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system works.

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You weren't actually explained that

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past what each of the five

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senses are.

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We were never taught sensory

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regulation as kids.

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You don't know how to explain it.

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And that's one of the big problems

Speaker:

with not only, you know, undiagnosed

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adults but children.

Speaker:

We go to children and we punish them

Speaker:

for behaving

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distressed,

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and we haven't taught them yet

Speaker:

what it means to emotionally

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regulate what it means to regulate

Speaker:

your sensory system

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in a plain language way that kids

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can understand. That's just not

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something that's done for how.

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To accommodate themselves or how

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great it is.

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Absolutely.

Speaker:

Don't even know where to start to

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feel better, you know, until,

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you know, there is some sort of, I

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think, intervention or I.

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A lot of the stuff that you do is

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building peer groups as well

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and hanging out with other

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neurodivergent people

Speaker:

and knowing how they,

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you know, their accommodations,

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their snooze rooms, their,

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you know, and

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that's that's really, you know, from

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my personal experience that that was

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really missing.

Speaker:

And I'm so glad you talk

Speaker:

about it the way that you do.

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Oh,

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well it's and that's the thing

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that's important because so many

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people have had to go without.

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And that's just something that,

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you know, you're going to get me

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going. Sorry, That's just something.

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Don't worry.

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No, that's that's one of the really

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big fears, is even the kids

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that grow up knowing they're

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autistic. And that's this is the big

Speaker:

thing. Another thing like everywhere

Speaker:

in disability issues, you see people

Speaker:

trying to split up into binaries.

Speaker:

You see people trying to say visible

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and invisible disability.

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You see people try to say mental

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and physical disability.

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You try to say all of these

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different binaries. You try to say

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high functioning and low functioning

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and you try to bust stuff up.

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And honestly,

Speaker:

even the people who are recognized

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because they're still put into these

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weird ass binaries that don't

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fit the human experience,

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they still actually don't get access

Speaker:

to the support they really need.

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They just get told, you

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know, oh, here's here's how you can

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behave like other people do.

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And that means that even even folks

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that are recognized, you know, it's

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not even undiagnosed and diagnosed

Speaker:

folks because diagnosed folks also

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go without accommodation because

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they're essentially told they're not

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trying hard enough to not be

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autistic anymore,

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which is horrifying.

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Who wants that anyway?

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So I know

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who would be terrible.

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The world would be a lesser place.

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But that's the thing of it.

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And when when

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we assume that

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we understand

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the experiences of somebody totally

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different from ourselves, we often

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miss out on stuff.

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And that is what has happened with

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autistic people and with

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non-speaking autistic people,

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especially when I started actually

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hanging out with non-speaking

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autistic people,

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I, I still had this idea

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in my head of like, well,

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you know, I don't have

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things like as bad as non

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speakers. And so, you

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know, maybe I maybe I am mild,

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but I hang out with non-speaking

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people and I

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have more in common with them

Speaker:

when they explain their experiences.

Speaker:

When I get to read, I have a

Speaker:

book of poetry here by Hannah

Speaker:

Emerson, who is an absolutely

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phenomenal non-speaking

Speaker:

poet.

Speaker:

Hannah Emerson's book is called The

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Kissing of Kissing.

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And when I read her poems,

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when I see

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folks like William, who

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I talked about earlier, William.

Speaker:

Suarez, who

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puts together these essays

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and poetry and

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this incredible connective.

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Communication.

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I have more in common with that

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than I do with the average

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non-autistic person that I have to

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go talk to at a

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school event or a party.

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I can't connect with those people

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the way I can connect with non

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speakers and

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the way that the autistic brain

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works is not more

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or less. It's not one way or

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the other.

Speaker:

They've actually done

Speaker:

neurological studies where they've

Speaker:

tried to say, Oh, what does the

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autistic brain look like?

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What does a severely autistic

Speaker:

brain look like?

Speaker:

And what they found was that there

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is no one autistic

Speaker:

brain. There is a non

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autistic brain.

Speaker:

They had a neurotypical control

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group and their brains all mostly

Speaker:

function the same. They followed the

Speaker:

same patterns as each other,

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but autistic people's brains.

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There was no one pattern.

Speaker:

Everyone's brain was doing something

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divergent, something different.

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And that's what we have in

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connection with each other.

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And that's why we can understand

Speaker:

each other. And that's why peer

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support is so important.

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Because somebody with a brain that

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does that, the typical wiring

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does not understand what

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life is like for someone whose brain

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does not do that typical wiring

Speaker:

and does not follow those typical

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paths.

Speaker:

And you're 100% right.

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Peer support is a huge

Speaker:

part of what I do

Speaker:

in my spare time and my advocacy,

Speaker:

but it's also what I really advocate

Speaker:

for for autistic kids,

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especially autistic kids

Speaker:

who are struggling.

Speaker:

With.

Speaker:

Things like institutional schools

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and things like families

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that don't understand them.

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Let's talk a bit about your

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advocacy. Right.

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A lot of folks tuning in are

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advocates themselves, and

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we talk about like

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a diverse amount

Speaker:

of tactics and the need to diversify

Speaker:

our tactics. And not everybody kind

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of goes that at tackling the status

Speaker:

quo the same way.

Speaker:

But when I look at the stuff

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that you do,

Speaker:

not just single handedly,

Speaker:

but the stuff that you've shared

Speaker:

with me, from non-Autistic

Speaker:

Poetry Night to

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your NDE and DP

Speaker:

Group.

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You seem to use all the tactics.

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Well, a lot of them.

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Which one brings you the most joy,

Speaker:

though, Lulu?

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Community building.

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Community building brings me the

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most joy. And in my opinion,

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it has been the most.

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Impactful work that

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I've done.

Speaker:

The fact that I have been able to

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bring Neurodivergent

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folks together

Speaker:

who otherwise would not ever

Speaker:

have met and

Speaker:

I have been able to get them into

Speaker:

rooms where they

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can share their experiences

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in whatever communication

Speaker:

method works for them,

Speaker:

where they are not feeling pressured

Speaker:

to speak out loud, where they are

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not feeling pressured to put their

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cameras on, and all of these things.

Speaker:

And the fact that I have managed to

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get folks into rooms and that

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they've become friends

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and that now they have that person

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that they can hang

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out with, that person they can talk

Speaker:

to that person, they can comment

Speaker:

on their Facebook status

Speaker:

when they're sick.

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That.

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The fact that, yeah, the

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fact that as humans, we're

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capable of bringing other humans

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together and

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building communities.

Speaker:

I am 100%

Speaker:

swept away whenever we have

Speaker:

events and and meetings

Speaker:

and things like this.

Speaker:

You mentioned that in the NDP,

Speaker:

that's the Neurodivergent NDP.

Speaker:

So that's a group of

Speaker:

volunteers and advocates

Speaker:

and allies

Speaker:

and NDP members

Speaker:

and folks that really want to see

Speaker:

neurodivergent issues

Speaker:

advanced on and progressed

Speaker:

on. Because right now,

Speaker:

unfortunately, progressive parties

Speaker:

like the NDP, who

Speaker:

are progressive in many other ways,

Speaker:

are still living.

Speaker:

You know, in in the past

Speaker:

when it comes to things like autism

Speaker:

and mental health

Speaker:

and when all of your solutions to

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neurological and psychological

Speaker:

conditions are behavioral,

Speaker:

you're really missing the point of

Speaker:

the problem, right?

Speaker:

You're not actually getting to the

Speaker:

root of what's going

Speaker:

on and what people are experiencing

Speaker:

and slapping Band-Aids on

Speaker:

on wounds, you know, without

Speaker:

actually closing them, as we know,

Speaker:

does not help, does not work,

Speaker:

and actually leads to a huge

Speaker:

potential for like

Speaker:

serious infection and serious

Speaker:

harm that gets in because

Speaker:

you didn't do what you needed to

Speaker:

do to begin with.

Speaker:

And so

Speaker:

with the narrative in NDP,

Speaker:

we actually formed because

Speaker:

a number of Neurodivergent

Speaker:

NDP members

Speaker:

and advocates

Speaker:

were essentially just tired of

Speaker:

hearing the same old, you know,

Speaker:

stigmatizing language and

Speaker:

bizarre, archaic, supposed

Speaker:

solutions to

Speaker:

the quote unquote autism file.

Speaker:

And this is one of the things that

Speaker:

I find very dehumanizing is the

Speaker:

way that autistic

Speaker:

kids are talked about by

Speaker:

politicians,

Speaker:

that there's a movement

Speaker:

of calling saying that autistic

Speaker:

children who are not being

Speaker:

behaviorally modified are

Speaker:

and I quote, languishing

Speaker:

away.

Speaker:

This is the kind of language they

Speaker:

use to describe

Speaker:

children who are reacting

Speaker:

to the world around them, which is

Speaker:

not built for them.

Speaker:

And it's it's just really

Speaker:

horrifying. They really painted as

Speaker:

some kind of like like epidemic.

Speaker:

You know, we have an actual plague

Speaker:

going on, but it's autistic

Speaker:

children that get treated like

Speaker:

they're some kind of contagion or

Speaker:

something like this.

Speaker:

And that is really unfortunate.

Speaker:

And so a number of

Speaker:

us got together and

Speaker:

I have to give a shout out to folks

Speaker:

like Kamal Ahmed and Spencer

Speaker:

Gallup, who are a couple of the

Speaker:

first folks that really

Speaker:

inspired me and

Speaker:

like uplifted me and made

Speaker:

me believe that we could actually do

Speaker:

something together. So I'm going to

Speaker:

cry because we actually have done

Speaker:

something together.

Speaker:

We've done something really amazing.

Speaker:

I had to also shout out to Eric,

Speaker:

Eric, Eddie, which is my my partner,

Speaker:

who's also done a phenomenal amount

Speaker:

of work with the and the NDP.

Speaker:

But what we've created is actually

Speaker:

this group of people who

Speaker:

share experiences and

Speaker:

share challenges and share struggles

Speaker:

and are able to organize

Speaker:

about it and are able able to

Speaker:

support each other as we try

Speaker:

to fight back.

Speaker:

And there's something just really

Speaker:

moving about it when,

Speaker:

you know, whenever, whenever we

Speaker:

actually get to do something,

Speaker:

whenever, whenever I get

Speaker:

to hear another neurodivergent

Speaker:

person say, Thank God you guys are

Speaker:

doing this or or whatever

Speaker:

else, it it is

Speaker:

completely mind

Speaker:

blowing that we've able

Speaker:

we've been able to make that space

Speaker:

and to take that space up

Speaker:

and to and to keep fighting,

Speaker:

especially in the face of huge

Speaker:

industries like

Speaker:

the like the behavioral intervention

Speaker:

industry.

Speaker:

It is really against the

Speaker:

interests of that industry

Speaker:

for neurodivergent people to

Speaker:

start talking to

Speaker:

each other and to start getting

Speaker:

connected and to start saying,

Speaker:

actually we don't have to

Speaker:

let this happen to kids

Speaker:

like us. We don't have to let this

Speaker:

happen to our community

Speaker:

and to actually start fighting back

Speaker:

against it. And now we've connected

Speaker:

with folks in every province.

Speaker:

We've connected with folks all

Speaker:

over this

Speaker:

colonial wreck of a planet.

Speaker:

And, you know, we've also connected

Speaker:

with neurodivergent

Speaker:

political groups like

Speaker:

the Neurodivergent Labor in

Speaker:

the UK and Neurodivergent

Speaker:

Labor in Australia, Labor

Speaker:

in Australia, of course,

Speaker:

having just formed government

Speaker:

in the recent election and the

Speaker:

Secretary of.

Speaker:

Labor. Australia

Speaker:

of the party is ADHD

Speaker:

openly and is part of

Speaker:

of neurodivergent Labor.

Speaker:

And the fact that there's stuff like

Speaker:

that worldwide and that we're,

Speaker:

you know, following in the footsteps

Speaker:

of these people that are doing such

Speaker:

amazing work and that we're going to

Speaker:

get that done here in Canada too.

Speaker:

It's absolutely wonderful

Speaker:

and it's hard.

Speaker:

It's not easy to fight,

Speaker:

you know, your own people.

Speaker:

It's not easy to have to say,

Speaker:

look, you guys, I know

Speaker:

you care.

Speaker:

I know that you believe the things

Speaker:

you do about autism because you

Speaker:

care.

Speaker:

But those things are wrong and

Speaker:

we need to do better.

Speaker:

It's not easy work.

Speaker:

People don't want to hear that.

Speaker:

People don't want to hear they've

Speaker:

been wrong about something that has

Speaker:

felt so virtuous to them, has felt

Speaker:

so good and so pure

Speaker:

for them. Oh, I'm just supporting

Speaker:

autistic children.

Speaker:

So when I come in and I have to tell

Speaker:

them, okay, it matters how

Speaker:

it matters, what support, it

Speaker:

matters. Because if

Speaker:

if that quote unquote, therapy

Speaker:

is somebody who actually sees this

Speaker:

kid as a series of behaviors,

Speaker:

you know, there are behavioral

Speaker:

intervention people, their names,

Speaker:

their title is behavior

Speaker:

technician.

Speaker:

These are people who are exposed to

Speaker:

three year olds for

Speaker:

sometimes 6 hours a day, five

Speaker:

days a week.

Speaker:

Behavioral technicians, they're

Speaker:

there to.

Speaker:

I don't know.

Speaker:

Make your robot child

Speaker:

act the way it's supposed to.

Speaker:

And that's that's scary stuff.

Speaker:

And the fact that support

Speaker:

for that often comes from what is

Speaker:

the left, what is supposed to be the

Speaker:

progressive side of politics?

Speaker:

Yeah, it's it's awful.

Speaker:

It feels terrible.

Speaker:

But let me tell you, it feels a

Speaker:

lot less terrible when you're

Speaker:

in a group of other neurodivergent

Speaker:

people who are ready to fight back

Speaker:

and support each other, not

Speaker:

just in political fights, but in

Speaker:

personal ones, in making

Speaker:

sure people you're you're getting

Speaker:

the medical care that you need and

Speaker:

the supplies that you need and

Speaker:

making sure that you're being taken

Speaker:

care of when disasters have struck.

Speaker:

And when you have that group of

Speaker:

people that are that are ready to

Speaker:

in the long haul, because this is

Speaker:

a long term fight.

Speaker:

And so being able to actually build

Speaker:

community like that means

Speaker:

everything, I

Speaker:

think, not just to me, but to

Speaker:

everybody within the NDA.

Speaker:

It's it means quite a lot

Speaker:

that we're able to do it.

Speaker:

So a lot of a lot

Speaker:

of the activists I've talked to

Speaker:

speak of building communities, I

Speaker:

think that's kind of pivotal to a

Speaker:

lot of to organizing

Speaker:

personally, Right?

Speaker:

Is first job is

Speaker:

bringing people together and making

Speaker:

sure your spaces are safe and,

Speaker:

you know, protecting them

Speaker:

and so folks

Speaker:

can grow and share and fight.

Speaker:

But I imagine

Speaker:

in our work as organizers

Speaker:

on the left, that perhaps sometimes

Speaker:

we're making spaces that aren't all

Speaker:

that friendly to autistic people.

Speaker:

Is there some things that

Speaker:

a lot of us are?

Speaker:

You know, I was in a

Speaker:

meeting the other day and very

Speaker:

progressive folks, but

Speaker:

there was just this huge

Speaker:

encouragement to turn on your

Speaker:

camera. You had to turn on your

Speaker:

camera. It was kind of like you

Speaker:

weren't really participating.

Speaker:

And immediately I thought

Speaker:

of how uncomfortable

Speaker:

that would make me on certain days.

Speaker:

And so I felt forced to turn my

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camera on.

Speaker:

But, you know,

Speaker:

things like that, are there

Speaker:

are there practical things that

Speaker:

we could do better as organizers

Speaker:

so that our spaces are

Speaker:

more accommodating?

Speaker:

Well, that's an excellent example

Speaker:

for sure, making sure people don't

Speaker:

have to turn cameras on.

Speaker:

Partially because

Speaker:

my experience is

Speaker:

different than some people's in that

Speaker:

I'm actually pretty comfortable

Speaker:

being on a zoom and just like not

Speaker:

looking at either myself

Speaker:

or the other person

Speaker:

because I've I

Speaker:

am really bad at things like eye

Speaker:

contact and facial

Speaker:

like on my moderating my face.

Speaker:

I'm just not good at that

Speaker:

because it takes so much motor

Speaker:

energy that then I can't pay

Speaker:

attention to other stuff

Speaker:

and.

Speaker:

The other thing is being able to

Speaker:

like stim.

Speaker:

So a lot of autistic people will

Speaker:

flap our hands or things

Speaker:

like this or we'll rock back and

Speaker:

forth.

Speaker:

People in meetings will all the time

Speaker:

see me rocking back and forth

Speaker:

and things like this are seen

Speaker:

as like disruptive or inpatient

Speaker:

or things like this.

Speaker:

And for that reason, a lot of people

Speaker:

would prefer to just not have their

Speaker:

camera on because that's something

Speaker:

they really have to worry about.

Speaker:

So that's a good example.

Speaker:

Another example, um,

Speaker:

inviting autistic

Speaker:

people

Speaker:

somewhere or sending

Speaker:

like a attempting

Speaker:

to reach out to autistic

Speaker:

people.

Speaker:

When you have,

Speaker:

uh,

Speaker:

when you have taken the words

Speaker:

of non autistic

Speaker:

autism advocates as

Speaker:

fact.

Speaker:

So this is something that people on

Speaker:

the left do a lot is

Speaker:

they hear a parent group

Speaker:

or something that's called

Speaker:

an advocacy group

Speaker:

say something and

Speaker:

they will repeat it

Speaker:

without

Speaker:

critically thinking about it and

Speaker:

without looking into it and

Speaker:

seeing how the people most impacted

Speaker:

actually feel.

Speaker:

And now this is the true across

Speaker:

cases. They're like books

Speaker:

by white people about

Speaker:

white fragility, for example,

Speaker:

which is like, okay, yeah, for sure.

Speaker:

Why? Why would I listen to a white

Speaker:

person about that, though?

Speaker:

Because that's not

Speaker:

that's not something a white person

Speaker:

is actually going to be the best

Speaker:

source for. And so that's not

Speaker:

something I'm going to do. I'm going

Speaker:

to turn to books by black people.

Speaker:

If I want to hear about anti-black

Speaker:

racism, you know, I'm going to turn

Speaker:

I'm going to turn to resources

Speaker:

by trans folks when I want to hear

Speaker:

what trans experiences are like.

Speaker:

And for some reason on

Speaker:

the left, it's okay

Speaker:

to hear from non autistic

Speaker:

people about what autistic lives are

Speaker:

like.

Speaker:

And I don't know why.

Speaker:

That's okay.

Speaker:

I know it has been the case with

Speaker:

other marginalized Asians before.

Speaker:

Absolutely.

Speaker:

And with other oppressed people.

Speaker:

That's absolutely the case.

Speaker:

But I do not understand

Speaker:

why people on the left act that

Speaker:

way towards disabled folks and

Speaker:

towards autistics and I should say

Speaker:

all disabled folks, because it's not

Speaker:

just autistics, it's also

Speaker:

non-disabled people who fight

Speaker:

so hard for things like

Speaker:

Bill C-7 to expand access

Speaker:

to MAID. That's another thing to

Speaker:

expand access to medically

Speaker:

a medical assistance in death.

Speaker:

And that's something that again, the

Speaker:

biggest advocates

Speaker:

for that and they call themselves

Speaker:

that the biggest

Speaker:

advocates for those expansions

Speaker:

are not the people that expansion's

Speaker:

going to kill, yet

Speaker:

those are the people who are seen as

Speaker:

experts.

Speaker:

Those those those

Speaker:

people who, you know, are

Speaker:

disregarding how many

Speaker:

lives we're going to lose because of

Speaker:

that expansion and

Speaker:

lives that could have been led

Speaker:

happily and comfortably

Speaker:

if they if people were given the

Speaker:

resources and accommodations

Speaker:

that they need.

Speaker:

And again, it comes back to this.

Speaker:

And now, yes, the the

Speaker:

further expansions upcoming

Speaker:

the further expansions include

Speaker:

folks whose only diagnosis is mental

Speaker:

illness.

Speaker:

It also includes mature

Speaker:

minors.

Speaker:

Which means parents

Speaker:

can decide that their disabled

Speaker:

child wants

Speaker:

a medically assisted death.

Speaker:

Obviously, that's horrifying.

Speaker:

The the expansion

Speaker:

the expansion to made was supported

Speaker:

by all the major parties in

Speaker:

parliament and was supported by the

Speaker:

NDP. The Liberals and Conservatives

Speaker:

opposed it some of the

Speaker:

time and some

Speaker:

of the time, didn't they?

Speaker:

They opposed it on religious

Speaker:

reasons, which is not the right

Speaker:

reason to oppose it.

Speaker:

It's one of those like, don't.

Speaker:

It's not that we agree on why,

Speaker:

but this is bad.

Speaker:

That's got to hurt, though.

Speaker:

I mean, it's like when the

Speaker:

conservatives have the right to take

Speaker:

on a bill and you just don't want

Speaker:

to agree with them for the wrong

Speaker:

reason. I cringed when you said

Speaker:

that. I was hoping it was fully

Speaker:

unanimous. We could hate them all.

Speaker:

No, sadly,

Speaker:

Honestly, though, it really

Speaker:

is scary stuff.

Speaker:

The Liberal government appointed

Speaker:

a.

Speaker:

The Liberal government called the

Speaker:

Speaker for

Speaker:

the deliberations about the

Speaker:

expansion just this past week.

Speaker:

And this guy that they called up

Speaker:

has advocated for parents to

Speaker:

be able to kill

Speaker:

their kids with medically assisted

Speaker:

death as young as five

Speaker:

years old.

Speaker:

I should say the thing

Speaker:

that got me really into advocacy,

Speaker:

you know, I thought I was

Speaker:

because of these stigmas, you know,

Speaker:

because I had only been in mental

Speaker:

crisis for a decade and a half,

Speaker:

and I didn't consider that serious.

Speaker:

I considered myself, like, not

Speaker:

disabled enough to really

Speaker:

talk about it, and I

Speaker:

should just be quiet about it

Speaker:

because I

Speaker:

don't have I'm

Speaker:

not severe enough to actually talk

Speaker:

about being disabled.

Speaker:

And the thing that really

Speaker:

actually got me to understand

Speaker:

that disabled people's

Speaker:

lives are valuable

Speaker:

enough and my own life

Speaker:

is valuable enough that I need to

Speaker:

acknowledge how hard things are and

Speaker:

I need to acknowledge how many

Speaker:

accommodations I need.

Speaker:

And, yes,

Speaker:

you know, furlough centers, my life

Speaker:

got considerably, considerably

Speaker:

easier and I had considerably

Speaker:

less challenges once I

Speaker:

acknowledged I needed a lot of

Speaker:

accommodations and started putting

Speaker:

those accommodations in place.

Speaker:

But until until

Speaker:

I went to an event which was

Speaker:

co-produced by Autistics United

Speaker:

Canada.

Speaker:

Autistics United Canada is an

Speaker:

absolutely incredible national

Speaker:

advocacy and education

Speaker:

group who have done some really

Speaker:

important work. And I really,

Speaker:

really, I really respect and

Speaker:

appreciate Artists United Canada,

Speaker:

and they had

Speaker:

put on an event for

Speaker:

the disability day of mourning.

Speaker:

Now, this is a day every

Speaker:

year it's an annual

Speaker:

vigil for

Speaker:

disabled children and disabled

Speaker:

adults, disabled people

Speaker:

who were killed by their caregivers.

Speaker:

Phil aside,

Speaker:

there is a an advocate

Speaker:

who did a

Speaker:

a speech at

Speaker:

this disability day of mourning

Speaker:

event that I happened to get

Speaker:

into because I at that

Speaker:

time was trying to figure out what

Speaker:

resources there were for autistic

Speaker:

people around.

Speaker:

And I found this event and I

Speaker:

went to it and

Speaker:

resolve Banerjee, who

Speaker:

is another amazing advocate,

Speaker:

writer and researcher,

Speaker:

Raghav did a speech

Speaker:

where he talked about how.

Speaker:

The.

Speaker:

The murdered disabled child

Speaker:

is vilified and

Speaker:

the parent is

Speaker:

given.

Speaker:

Praise because.

Speaker:

They had so much on their plate.

Speaker:

And this is the case when

Speaker:

parents, you know, decide that

Speaker:

their autistic non-speaking child

Speaker:

is just so miserable

Speaker:

that they would be better off

Speaker:

deceased.

Speaker:

Then, you know, now

Speaker:

now they're going to have a legal

Speaker:

right to do that.

Speaker:

And that means that non-speaking

Speaker:

autistic will never have the chance

Speaker:

to develop a system of

Speaker:

communication. We will never get to

Speaker:

learn what was in their brain.

Speaker:

They may never go on to do the

Speaker:

things that they might have done.

Speaker:

They may not go on to do the art,

Speaker:

to write the poems, to do

Speaker:

the paintings, to have the

Speaker:

relationships that they would have

Speaker:

had. And it's because people

Speaker:

have decided that

Speaker:

disabled folks lives are not

Speaker:

valuable and can't be valuable.

Speaker:

And unfortunately, you know,

Speaker:

we talk about misconceptions and

Speaker:

oppression, and that's the

Speaker:

that's the root of it.

Speaker:

That's able ism right there.

Speaker:

And this is

Speaker:

something C-7 is something that has

Speaker:

has really called into sharp

Speaker:

attention the lack

Speaker:

of disability, justice, education

Speaker:

on the left

Speaker:

ever.

Speaker:

It's been being

Speaker:

talked about for, you know, more

Speaker:

than a year.

Speaker:

And still there are people on

Speaker:

the left saying, well, I support

Speaker:

medically assisted death.

Speaker:

And disabled people have to say,

Speaker:

yeah, we we do as well.

Speaker:

But lifting these safeguards right

Speaker:

now and expanding access

Speaker:

to children

Speaker:

and people whose only diagnosis

Speaker:

is mental illness and people

Speaker:

who do not have a foreseeable death,

Speaker:

and people who are only suffering

Speaker:

because they don't have the housing

Speaker:

and the supports and the

Speaker:

the living support

Speaker:

that they need to live

Speaker:

the good life they have in

Speaker:

their potential future.

Speaker:

Instead, these people.

Speaker:

Are going to die.

Speaker:

This is something that was brought

Speaker:

to the federal NDP convention.

Speaker:

There was an emergency resolution

Speaker:

last year at the convention

Speaker:

which asked the party urgently

Speaker:

to specifically to consult

Speaker:

with autistic people about

Speaker:

support of things like

Speaker:

C-7 and the National Autism

Speaker:

Strategy, which is a

Speaker:

piece of legislation which

Speaker:

is being written by non

Speaker:

autistic people and non autistic

Speaker:

organizations,

Speaker:

obviously.

Speaker:

And as as these go through.

Speaker:

The problem is that it's

Speaker:

not again, it's not that

Speaker:

I don't like this.

Speaker:

It's that it's deadly.

Speaker:

It's that this expansion

Speaker:

you know, I can talk about how

Speaker:

autistic people are stigmatized

Speaker:

and ostracized

Speaker:

and treated horribly everywhere from

Speaker:

school to workplaces.

Speaker:

And then I can tell you that we're

Speaker:

about to make it so

Speaker:

anyone who's depressed can

Speaker:

immediately qualify for maid.

Speaker:

I can't.

Speaker:

We can't build a community

Speaker:

with disabled folks.

Speaker:

We can't help disabled people

Speaker:

if we're just offering them only

Speaker:

death and nothing else.

Speaker:

And unfortunately,

Speaker:

yeah, that's that's a message that

Speaker:

seems not to have resonated

Speaker:

yet with much of.

Speaker:

Much of the left, which is

Speaker:

in Canada, which is a really

Speaker:

startling thing.

Speaker:

Yeah.

Speaker:

You know, we're getting near the

Speaker:

kind of end of our session.

Speaker:

I imagine I'm going to have to have

Speaker:

you on again to talk more

Speaker:

specifically on

Speaker:

some campaigns that

Speaker:

are going to shape up.

Speaker:

But if you could have the

Speaker:

allies ship.

Speaker:

Of listeners, if you could call

Speaker:

them, to action to help.

Speaker:

With your work and

Speaker:

what's one thing or you

Speaker:

know, what broadly

Speaker:

could you tell them?

Speaker:

That's where they need to start.

Speaker:

Listen to non-speaking autistic

Speaker:

people is where I would start

Speaker:

presume competence

Speaker:

of non speakers and listen

Speaker:

to non-speaking autistic people.

Speaker:

There are non speakers who have

Speaker:

been absolutely

Speaker:

unbelievably patient

Speaker:

as social

Speaker:

movements and politicians

Speaker:

have talked over them and walked

Speaker:

over them.

Speaker:

And then I cannot tell

Speaker:

you how much

Speaker:

non-speaking autistics have been

Speaker:

through

Speaker:

because of

Speaker:

so-called progressive people's

Speaker:

insistence on listening

Speaker:

to non autistic people

Speaker:

about what experiencing life as

Speaker:

an autistic person is like.

Speaker:

I'm sure I can provide some links

Speaker:

that can be in the description of

Speaker:

the podcast to some folks that

Speaker:

folks can listen to and folks that

Speaker:

people can check out.

Speaker:

I highly recommend

Speaker:

Communication first and

Speaker:

the International Association for

Speaker:

Swallowing as communication as

Speaker:

starting points, because

Speaker:

those those are

Speaker:

organizations that have

Speaker:

like endless resources from

Speaker:

non-speaking people.

Speaker:

Because when we talk about, you

Speaker:

know, oh, this kid, he's crying and

Speaker:

running away. So we have to deal

Speaker:

with this behavior.

Speaker:

We're missing the experience of

Speaker:

that human being.

Speaker:

We are missing the experience of

Speaker:

that person.

Speaker:

And if we can go to somebody else

Speaker:

who screams and runs away when

Speaker:

things are overwhelming, who

Speaker:

has developed a system of

Speaker:

communication, who has been given

Speaker:

access to communication, and we

Speaker:

can ask them, what

Speaker:

is that experience like?

Speaker:

What do you need in that situation

Speaker:

that is worth 1 million

Speaker:

times more than any temporary

Speaker:

behavioral performance

Speaker:

of not having that experience?

Speaker:

And so, yeah, my

Speaker:

number one thing is get

Speaker:

your information from non-speaking

Speaker:

autistic people about autism.

Speaker:

And I feel like I have to add the

Speaker:

disclaimer to also believe

Speaker:

that, yes, whatever the kit,

Speaker:

I don't care how absurd

Speaker:

you think the accommodation sounds,

Speaker:

you know, a kind of light

Speaker:

texture.

Speaker:

Just believe them.

Speaker:

Yeah, because that is

Speaker:

my biggest frustration is

Speaker:

trying to

Speaker:

have folks understand

Speaker:

and be empathetic towards

Speaker:

it in order

Speaker:

to provide the accommodation.

Speaker:

Well, that doesn't make sense to

Speaker:

you.

Speaker:

And again, it's about the experience

Speaker:

of it, right? It's about recognizing

Speaker:

that other people who have different

Speaker:

kinds of brain, the you and

Speaker:

different kinds of nervous system

Speaker:

interacts with the world differently

Speaker:

than you. And when you can accept

Speaker:

that and acknowledge that actually

Speaker:

a lot of stuff becomes less

Speaker:

frustrating and it becomes a lot

Speaker:

easier to maintain

Speaker:

relationships and communication

Speaker:

and all kinds of other things, once

Speaker:

you can acknowledge the way

Speaker:

I would experience the situation

Speaker:

is not necessarily how that person

Speaker:

is experiencing the situation.

Speaker:

You have to listen to that person

Speaker:

exactly right.

Speaker:

You have to believe that person

Speaker:

about how they are experiencing the

Speaker:

situation, because otherwise

Speaker:

you're not doing equity, you're

Speaker:

not doing justice, you're doing

Speaker:

ego.

Speaker:

And that's not what our movements

Speaker:

are supposed to be made out of.

Speaker:

Yeah, yeah.

Speaker:

No. Why do you need the

Speaker:

accommodation? Because I think a lot

Speaker:

of people

Speaker:

don't realize why,

Speaker:

Right? They just know.

Speaker:

I don't know why that light bothers

Speaker:

me. Right. Yeah, I.

Speaker:

It just does.

Speaker:

Yeah. I don't know why I get home

Speaker:

at the end of the day and need to

Speaker:

decompress for half an hour before

Speaker:

anyone asks me a question.

Speaker:

I just do.

Speaker:

Yeah.

Speaker:

So hundred percent.

Speaker:

And yeah, having to defend

Speaker:

that, especially children who most

Speaker:

certainly cannot articulate

Speaker:

why something needs to be turned off

Speaker:

or on or whatever

Speaker:

is incredibly frustrating.

Speaker:

So like, although

Speaker:

folks can advocate for themselves,

Speaker:

I'm so grateful that there are

Speaker:

people that, you know, take this

Speaker:

onus on themselves the

Speaker:

way that you have, the way that, you

Speaker:

know, other guests have, too.

Speaker:

One of the other things one of the

Speaker:

other things that really sucks

Speaker:

is I would rather

Speaker:

have given this interview

Speaker:

to a non like I would rather have

Speaker:

brought a non speaker up and been

Speaker:

like, Hey, do you want to do this

Speaker:

interview?

Speaker:

But right now on the left,

Speaker:

it's not really safe

Speaker:

for autistic people to be

Speaker:

advocating.

Speaker:

The reason that I

Speaker:

push as hard as I do and the reason

Speaker:

that I'm making the space I'm making

Speaker:

is because non

Speaker:

speakers and autistic

Speaker:

folks in general right now don't

Speaker:

feel safe engaging

Speaker:

in a lot of political stuff.

Speaker:

You've got to hide yourself there.

Speaker:

You can't you know, there's so much

Speaker:

ableism, there's so much

Speaker:

inaccessibility

Speaker:

that. A lot of folks are just

Speaker:

tuning out.

Speaker:

And unfortunately,

Speaker:

when we do things like we have this,

Speaker:

yeah, this actually kind

Speaker:

of ties into the idea

Speaker:

of like disability fakers.

Speaker:

This is, again, another conservative

Speaker:

ideal that a lot of leftists

Speaker:

unfortunately also hold, which

Speaker:

is this idea that there are people

Speaker:

taking advantage of accommodations

Speaker:

and disability supports, which

Speaker:

is absurd because you have to

Speaker:

fight literally like through

Speaker:

fire and brimstone to

Speaker:

get supports and

Speaker:

to get accommodations.

Speaker:

And I don't know anyone who would do

Speaker:

that, like just to

Speaker:

get an accommodation that didn't

Speaker:

help them that

Speaker:

they didn't need.

Speaker:

That's just not how that

Speaker:

works.

Speaker:

And unfortunately.

Speaker:

To me, that makes no sense at all

Speaker:

because I would rather hide

Speaker:

it. Yeah. Than

Speaker:

be open and beg.

Speaker:

For an accommodation solely then beg

Speaker:

and then then to to

Speaker:

lose your, you know, your

Speaker:

sense of of

Speaker:

authenticity and all of this because

Speaker:

you've got to, you know, go through

Speaker:

these dehumanizing

Speaker:

trials just to get accommodations.

Speaker:

And yeah, that asking why

Speaker:

is like it's a certain kind of

Speaker:

cruelty right.

Speaker:

You've you've got to try to

Speaker:

especially for folks who have never

Speaker:

received adequate support,

Speaker:

who don't have the words to advocate

Speaker:

for themselves, even if you are

Speaker:

speaking, if you've never been

Speaker:

actually exposed to the types

Speaker:

of accommodations and the

Speaker:

types of sensory experiences

Speaker:

and all of this, then how on earth

Speaker:

are you supposed to know what to ask

Speaker:

for and how,

Speaker:

let alone to explain?

Speaker:

Like I can't explain the

Speaker:

physical internal reaction

Speaker:

that's happening.

Speaker:

You know, when the air conditioners

Speaker:

so loud that I can't think.

Speaker:

I don't know how to explain that

Speaker:

past that, but that's

Speaker:

100% a thing that will

Speaker:

stop me from getting any work done

Speaker:

all day long.

Speaker:

And that's not something that folks

Speaker:

for whom that is not a problem

Speaker:

can really understand.

Speaker:

It's not something that people have

Speaker:

a reference for.

Speaker:

But we've got this sort of trend of

Speaker:

people that will say things like,

Speaker:

Oh, everyone's a little

Speaker:

neurodivergent insert

Speaker:

here. So people will say, Oh,

Speaker:

you know, everyone's a little ADHD

Speaker:

sometimes or something like that.

Speaker:

I hear that all the time.

Speaker:

Everybody's I hear that somewhere on

Speaker:

the spectrum or whatever.

Speaker:

And the problem with phrases like

Speaker:

that is it leaves these people who

Speaker:

are not autistic, who are not

Speaker:

ADHD, to believe

Speaker:

that an

Speaker:

event that has happened to them

Speaker:

allows them to understand what

Speaker:

it's like to live as an autistic

Speaker:

person every single day.

Speaker:

And that's just not the case.

Speaker:

They just don't have that frame of

Speaker:

reference.

Speaker:

And that has I really

Speaker:

believe that's been a huge driver.

Speaker:

That kind of language and that kind

Speaker:

of attitude has been a huge driver

Speaker:

towards people saying things

Speaker:

like, Why would you need that

Speaker:

accommodation? We all have trouble

Speaker:

with bright lights sometimes.

Speaker:

Why would you need that

Speaker:

accommodation when the rest of us

Speaker:

can just deal with it

Speaker:

and it's because we're not

Speaker:

experiencing it the same way

Speaker:

at all.

Speaker:

But yeah, there's this belief that,

Speaker:

you know, well, I experience things,

Speaker:

so that's how it must be.

Speaker:

And yeah, that, that absolutely

Speaker:

screws people out of accommodations

Speaker:

all the time, which

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is awful.

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I actually also really appreciate

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the point about like having

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to go beg for accommodations

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because I really do want to

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highlight like it's an incredibly

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dehumanizing and

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disrespectful process

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in every institution

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to go there and get accommodations

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and to go there and be openly

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disabled.

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There aren't institutions that have

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made that an empowering process.

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I can't name one

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other than like, you know, folks,

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folks in grassroots organizing

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groups, like people like the

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Disability Justice Network.

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And I would hope

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some of the work that I do as well.

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But I you know, I'm not the one that

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gets to say that even.

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And I have to recognize that.

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So, like, what does that look like?

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May be actively providing

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accommodations.

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You know,

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people are likely to need

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asking ahead of events

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100% accommodations.

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You know, organizers can expect

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rather than waiting for somebody to

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come and say, I need.

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Yeah. Subtitles, right?

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I need subtitles.

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Can you put them on?

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I mean, that those are just small

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kind of commonsense things.

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But I found like,

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just adding an accessibility field,

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you know, to an invitation.

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Absolutely.

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So that, yeah, nobody has to figure

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out what the mechanism is.

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And then following up on it.

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Right. Because another problem is

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that sometimes people will put

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something like a field in, but then

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they'll decide it's not useful

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because they aren't following up on

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it.

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They the gatekeepers are like,

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Oh, this system's too hard for me.

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I need to just not do this.

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Which is unfortunately, what happens

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in a lot of institutions and

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organizations is

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that non-disabled people really

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don't understand how vital those

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accommodations are and the space

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to make those accommodations.

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Nobody wants to go to an event

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and have to go to,

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you know, get in through the back

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door because there's no ramp at the

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front. And then it's so loud in

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there and there's absolutely no

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break and there's no, you know,

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access to things.

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Nobody wants to go through that.

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But we force people to by

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not proactively thinking about

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it.

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And I also don't want anyone to

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believe that you can you can foresee

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every possible accommodation that's

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necessary.

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It is very wise

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to get in the habit

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of, you know, a

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semi, a universal design.

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A lot of folks don't have the

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you know, especially grassroots

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groups don't have resources to

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redesign every single one of their

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bits of work all at once.

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But attempting to make sure

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that all of your spaces provide

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a base accommodation

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group or a base list of

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accommodations

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and then having that space where you

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peop you know that people will be

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listened to and people know that

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they will be listened to.

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And having that space to say, hey,

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what doesn't work for you?

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If there's something you need,

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please let us know.

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Here's the resources to let

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us know. We're not just going to

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say, oh, email us.

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We're going to.

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Actually mail the accessibility

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officer an email address

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I'm going to mention once and not

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put in the chat.

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Exactly.

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The kind of thing doesn't happen.

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Wouldn't it be horrible if it did?

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Wouldn't that be so exclusionary

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and anti equitable

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and oppressive if that was how

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people were going about things?

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And so, yeah, it's it's it's really

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it is unacceptable stuff

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and it goes on every day.

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So, Lulu,

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I've asked you a lot of questions,

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but is there anything.

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That.

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I didn't ask that you definitely

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wanted to share.

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Yeah.

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One thing I will say is

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being an artistic advocate in

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supposedly progressive spaces

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has been really

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illuminating for me.

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Um, and I,

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I say that because

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autistic people are

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presumed to be

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incapable.

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No matter what we are doing.

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So I'm currently

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in a master's degree

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doing actual research

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on autistic youths well-being.

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I've also been studying

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autism and autistic people for

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something like a decade.

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I've been

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a peer supporter for autistic

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people through the Mood Disorders

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Association of Ontario,

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and I work with multiple advocacy

Speaker:

groups across Canada and across

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the world.

Speaker:

But because I'm.

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Autistic.

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And because I say I'm autistic,

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there are politicians

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who will say, I can't possibly

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know anything about autism

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and I can't possibly be telling the

Speaker:

truth because I'm speaking.

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But that same politician

Speaker:

will then go to a non autistic

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speaking parent

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and believe what that parent says

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about autism.

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Now, that parent is not

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hasn't been studying autism for ten

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years, isn't currently researching

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autism officially with

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government funding and

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hasn't been involved

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in the autistic community,

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doesn't have any adult

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non-speaking autistic friends that

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they don't have power over.

Speaker:

But that's the person that's going

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to be listened to, not the

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autistic expert of the field.

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And that the only

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reason that that could be happening

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is able is a

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that's what that is.

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That's prejudice

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and ableism.

Speaker:

And unfortunately, that's running

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rampant.

Speaker:

And so, yeah.

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The other thing I would say is just

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that people need to leave

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their biases and assumptions

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about what autism means

Speaker:

and what autism feels

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like to autistic people

Speaker:

behind in the past,

Speaker:

because that's where the information

Speaker:

they formed those assumptions from

Speaker:

is from the past.

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It's ancient history

Speaker:

at this point.

Speaker:

So anybody who

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wants to talk about autism,

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whether you're a politician or,

Speaker:

you know, a even a non

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autistic disabled advocate or

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somebody else,

Speaker:

you can't go in

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with assumptions that you

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learned from people who are

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autistic.

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You can't go in with assumptions

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that you had backed up

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by

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sensationalized media.

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You know, you have to go into

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these conversations recognizing

Speaker:

that what you've learned about

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autism was wrong.

Speaker:

Sometimes it's it sucks to hear that

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that what we think we

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know about something is wrong.

Speaker:

But what most leftists

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know about autism is simply

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not true.

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It's not how autistic brains

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work.

Speaker:

And so that's that's what I would

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say is I really need people to

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understand that.

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And there's nothing wrong with you

Speaker:

for not knowing about autism.

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There's nothing wrong with the

Speaker:

people who are mistaken,

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who have been taught wrong.

Speaker:

That's that's not.

Speaker:

You're not the problem.

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But if you hear this stuff and

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you read these resources and you go

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check out these non speakers that

Speaker:

I'm talking about

Speaker:

and you still side

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with non autistic people about

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this political issue, about

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this justice issue,

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then you're kind of the problem,

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you know.

Speaker:

And so I do need people to start

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thinking about that and to start

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putting that in perspective for

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themselves because like

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as the tide turns, it's

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going to be really embarrassing

Speaker:

for people who are fighting

Speaker:

the tide.

Speaker:

You can't stop it.

Speaker:

This is a justice issue.

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This is a human rights issue.

Speaker:

And believing hard enough that

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you're on the right side of it,

Speaker:

that's not going to cut it for

Speaker:

you when it actually comes

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around. So I just really,

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really hope that people can think

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about it critically

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before they throw support behind

Speaker:

things that are actually really

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ablest.

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Yeah, I think there's a lot of

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unpacking of the abilities.

Speaker:

I think that's one of the

Speaker:

last isms too, for us

Speaker:

to really explore because like I

Speaker:

said at the beginning, I have never

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seen

Speaker:

that absence of nothing

Speaker:

for us without us

Speaker:

in any kind of policy formation,

Speaker:

except when it has to deal

Speaker:

with disabled folks.

Speaker:

And you made a

Speaker:

comment there where folks

Speaker:

need to understand

Speaker:

autism better and

Speaker:

understand the autistic experience

Speaker:

better.

Speaker:

And that also

Speaker:

goes for people who've gone

Speaker:

undiagnosed for some autistic

Speaker:

people, because those

Speaker:

those misconceptions permeate

Speaker:

everybody there.

Speaker:

Society will say, yeah, yeah,

Speaker:

that ableism isn't just enabled

Speaker:

people, unfortunately,

Speaker:

and it has such a devastating

Speaker:

impact.

Speaker:

It does.

Speaker:

It does.

Speaker:

A recent study

Speaker:

and again, this is you know,

Speaker:

one of the things about being

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autistic is that.

Speaker:

Most autistic folks

Speaker:

really treasure

Speaker:

input and information in

Speaker:

a way that non-autistic people don't

Speaker:

as much.

Speaker:

I found

Speaker:

and one of the things there is

Speaker:

I like having backup

Speaker:

for what I'm saying.

Speaker:

Like, I like knowing what I know and

Speaker:

knowing why it's the case.

Speaker:

I need to know why something is the

Speaker:

case. If I am going to actually

Speaker:

think that I believe it.

Speaker:

And when we

Speaker:

don't know.

Speaker:

Why there's why

Speaker:

this disconnection keeps happening

Speaker:

between people or why

Speaker:

this environment that other people

Speaker:

seem okay in is so stressful to

Speaker:

us. Or why, if all the

Speaker:

other kids can sit in the circle,

Speaker:

why does it feel so bad for me to

Speaker:

sit in the circle?

Speaker:

And if you don't know that you

Speaker:

haven't had that explained to you

Speaker:

that your circuitry is processing

Speaker:

things different than other

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people's, then you you think

Speaker:

there's something wrong with you.

Speaker:

And a very reasoned study, which is

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really horrifying in Sweden,

Speaker:

found that the majority

Speaker:

of people hospitalized

Speaker:

for psychiatric problems

Speaker:

when they were properly screened

Speaker:

were ADHD and autistic

Speaker:

people.

Speaker:

And out of the 34

Speaker:

autistic people that they found,

Speaker:

only seven of

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those people were diagnosed

Speaker:

autistic.

Speaker:

And this survey found 34

Speaker:

in this one hospital.

Speaker:

Those people were undiagnosed

Speaker:

their whole lives

Speaker:

and they went through a mental

Speaker:

crisis because of it.

Speaker:

And there's no denying that that's

Speaker:

how that goes when you're autistic

Speaker:

and you go through the world and you

Speaker:

don't have accommodations and you're

Speaker:

expected to act like everybody else.

Speaker:

It leads to mental illness that

Speaker:

leads to mental crisis.

Speaker:

And we know that.

Speaker:

So we really need to back

Speaker:

away from behavioral

Speaker:

services and people

Speaker:

who want us to believe.

Speaker:

That.

Speaker:

Autistic people's

Speaker:

suffering and struggling

Speaker:

comes from the autistic

Speaker:

person's own behavior.

Speaker:

That's just not how it works.

Speaker:

The struggle and the suffering comes

Speaker:

from the environment and the

Speaker:

society, which is consistently

Speaker:

oppressing and pushing autistic

Speaker:

people down to try and

Speaker:

turn them into something they're

Speaker:

not.

Speaker:

And that's what actually causes

Speaker:

the harm.

Speaker:

I totally wish more people

Speaker:

understood that perspective.

Speaker:

Lulu and I, we're working on it.

Speaker:

I yeah, I was just going to say, I

Speaker:

know that is your mission and not

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just your mission, so

Speaker:

I know you had a bright moment.

Speaker:

I know it was a lot of doom and

Speaker:

gloom, but you had a bright

Speaker:

moment there where you said, you

Speaker:

know, we have done a lot and you

Speaker:

have.

Speaker:

And we can do more.

Speaker:

That's the thing. I don't

Speaker:

believe there is a limit to

Speaker:

how much autistic people can can

Speaker:

achieve and neurodivergent people in

Speaker:

general. I know we talk a lot about

Speaker:

autism here because that's like a

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sort of a political

Speaker:

issue at this moment.

Speaker:

But very soon so will be

Speaker:

ADHD and OCD

Speaker:

and

Speaker:

things like

Speaker:

dyslexia and dyspraxia

Speaker:

and all of these things because

Speaker:

people who are neurodivergent

Speaker:

are running

Speaker:

up against these barriers

Speaker:

and these barriers are being made

Speaker:

taller right now.

Speaker:

They're being made thicker.

Speaker:

They're being made harder to scale

Speaker:

by this sort of doubling down

Speaker:

on a behavior focus.

Speaker:

This industry will expand.

Speaker:

It will not just be autistic people

Speaker:

that be the behavior intervention

Speaker:

industry targets.

Speaker:

Once they have successfully

Speaker:

legislated themselves into autistic

Speaker:

people's lives, they will legislate

Speaker:

themselves into other children's

Speaker:

lives. They will legislate

Speaker:

themselves into a disabled adults

Speaker:

lives. They will legislate

Speaker:

themselves into poor people's

Speaker:

lives because those poor people just

Speaker:

aren't behaving well enough to

Speaker:

make the money they need.

Speaker:

It's going to expand.

Speaker:

This is an industry which is a

Speaker:

threat to every marginalized

Speaker:

community and it needs to start

Speaker:

being treated that way.

Speaker:

Lulu, I want to thank you so much

Speaker:

for your time again

Speaker:

and again. I honestly could never

Speaker:

thank you enough on

Speaker:

a personal note.

Speaker:

But professionally, you know, you

Speaker:

you spent time here informing our

Speaker:

listeners. You spend countless

Speaker:

hours trying to better

Speaker:

the NDP and the policies there.

Speaker:

And then just all of

Speaker:

your work in the Neurodivergent

Speaker:

community and

Speaker:

the academic work that you do.

Speaker:

So I thank you very, very much.

Speaker:

Thank you so much, Lulu.

Speaker:

Like in all things that we do,

Speaker:

there's a team behind blueprints of

Speaker:

disruption.

Speaker:

I want to give a big thank you to

Speaker:

our producers, Santiago.

Speaker:

Hello, Quinn Tero and

Speaker:

Jay Woodruff.

Speaker:

Our show is also made possible by

Speaker:

the support of our listeners.

Speaker:

So if you appreciate our content

Speaker:

and would like to become a patriot,

Speaker:

please visit us at.

Speaker:

W w. W dot patron

Speaker:

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Speaker:

So if you know of any work that

Speaker:

should be amplified or want

Speaker:

to provide feedback of our show,

Speaker:

please reach out to us on Twitter at

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project of new left media, an

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About the Podcast

Blueprints of Disruption
A Podcast for Rabble Rousers
Blueprints of Disruption is dedicated to amplifying the work of activists, organizers and rabble rousers. This weekly podcast, hosted by Jessa McLean and Santiago Helou Quintero, features in-depth discussions that explore different ways to challenge capitalism, decolonize spaces and create movements on the ground. Together we will disrupt the status quo one episode at a time.

About your hosts

Jessa McLean

Profile picture for Jessa McLean
Host, Jessa McLean is a socialist political and community organizer from Ontario.

Santiago Helou Quintero

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Producer