Jan. 22, 2025 · transcript

ABOUT THIS EPISODE

Dr. Jeff Preston is Definitely Controversial, Possibly Immortal

In a GrowAbility first (but certainly not last), Holly joins Joe for an in-person interview with Dr. Jeff Preston, a disability studies professor, advocate, and self-proclaimed immortal who refuses to let ableism win. From his early days as a three-year-old fundraising speaker to his current role challenging systemic barriers, Jeff shares candid insights about disability rights, accessibility legislation, and why spite makes an excellent motivator. He unpacks why Ontario won't meet its 2025 accessibility goals, explores the connection between disability and poverty, and explains why inaccessible spaces are a form of censorship. Through thoughtful analogies—from farmers as natural innovators to disabled people as "ghosts in the cornfield"—Jeff illustrates how accessibility benefits everyone. Whether discussing urban agriculture, media representation, or the importance of inter-ability relationships, his message is clear: disability is everywhere, and it's time our world reflected that reality.

Follow GrowAbility at any of our socials via: https://gapod.me/links

Subscribe to the Fresh & Nutritious Newsletter at: https://gapod.me/newsletter

Links Mentioned:

Jeff Preston's Website: https://jeffpreston.ca/
The Invalid Culture Podcast: https://invalidculture.com/
Find Jeff on LinkedIn: https://www.linkedin.com/in/drjeffpreston/
Find Jeff on Facebook: https://www.facebook.com/getmobilize
Disability Studies at King's University College: https://www.kings.uwo.ca/academics/disability-studies/

About Jeff Preston

Born and raised in Port Elgin, Jeffrey Preston, Ph.D., is an Associate Professor of Disability studies at King’s University College @ Western University in London, Ontario.

A long-time advocate and motivational speaker, Jeff started fundraising for Muscular Dystrophy research when he was 3 years old (at a beach volleyball tournament in Port Elgin) and was later a 2-time Ontario poster child and the first national campaign assistant for Muscular Dystrophy Canada. His annual golf tournament, the Jeff Preston Celebrity Golf Tournament, ran for over 20 years and raised over $1.4 million for MD research.

Jeff has previously served as vice-chair for Easter Seals Ontario, member of the Accessibility Standards Advisory Committee for the Ministry of Community and Social Services, board chair of Defeat Duchenne Canada, two-term member of the Committee of Adjustments at London City Hall, and vice-chair of the leadership table of the London For All anti-poverty initiative organized by the City of London and the United Way of Elgin Middlesex.

Jeff’s first book, The Fantasy of Disability, was just published internationally 2016 and reissued in paperback by Routledge in 2018.

Show Credits

GrowAbility is hosted by Joe Gansevles and Holly Pugsley.

Special thanks to this week's guest, Jeff Preston.

Our show is produced by Adam Caplan, Joe Gansevles, and Holly Pugsley.

Production support from Oliver Gansevles, Evan Gansevles, Scott Hohn, Kevin Labonte, Paul Rogers, Dorantina Uka, and Allan Williamson.

Holly Pugsley of Just Keep Growing art directed this episode and made sure the plants looked great.

Audience strategy by Dorantina Uka and Tess Alcock.

Our theme music is Wandering William by Adrian Walther and can be found on Soundstripe.

Adam Caplan is web.isod.es Executive Producer, and Sammy Orlowski is our senior creator.

Thanks to TechAlliance of Southwestern Ontario, including Farida Abdelnabi and Sarah Edmondson, for letting us shoot at their beautiful offices.

Special thanks to Leanne Gansevles for the support and yummy food, Hubert Orlowski for helping our podcast sound great, and Gabor Sass for making some great introductions.

GrowAbility is a web.isod.es Production and is produced with the support and participation of the team at The Patch and Hutton House.

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IN THIS EPISODE

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TRANSCRIPT 🔗

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01:00:00
Hey Holly, who's your favorite

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01:00:02
superhero?

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01:00:03
Poison Ivy, of course.

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01:00:05
Isn't Poison Ivy a villain?

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01:00:07
Hey, one person's villain is another

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01:00:09
person's hero.

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01:00:10
Fair enough.

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01:00:12
Who's your favorite superhero?

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01:00:14
Oh, Sprocket Man, of course.

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01:00:15
That sounds made up.

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01:00:17
Sprocket Man is totally not a made up

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01:00:19
thing and his superpower is exactly

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01:00:21
what you think it is.

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01:00:22
He's a cyclist who wears a cape, isn't

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01:00:24
he?

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01:00:24
Well, no cape but plenty of safety

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01:00:26
tips.

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01:00:28
Whatever rings your bell, Joe.

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01:00:30
From webisodes, this is GrowAbility,

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01:00:32
a digital documentary at the

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01:00:33
intersection of urban agriculture, food

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01:00:35
security and community.

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01:00:36
On this episode, we speak with

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01:00:37
professor, motivational speaker,

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01:00:39
podcaster and staunch advocate for

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01:00:41
individuals with disabilities.

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01:00:43
Including himself.

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01:00:44
Including himself, Dr. Jeff Preston.

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01:00:47
Holly, we've spent a lot of time on the

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01:00:49
show talking about the grow part of our

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01:00:51
name, but not the ability part.

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01:00:53
It's true. We both work with people

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01:00:54
with disabilities at The PATCH,

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01:00:56
blending urban agriculture with skills,

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01:00:59
training, volunteering and connecting

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01:01:00
to the community.

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01:01:01
But we haven't really brought out those

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01:01:03
themes into this show yet.

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01:01:05
And that's where Dr. Preston comes in.

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01:01:06
One of the many things I love about

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01:01:08
Jeff's work is he looks at a whole

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01:01:10
bunch of parts of our community through

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01:01:11
an equity driven lens.

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01:01:12
I want him to talk about how social

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01:01:14
policy negatively impacts both the

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01:01:16
disabled community and the way that

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01:01:18
they impact those experiencing poverty.

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01:01:20
What about you?

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01:01:21
I'm just looking forward to having

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01:01:22
another person with fantastic taste in

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01:01:23
clothes on the pod.

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01:01:24
Of course you are.

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01:01:27
Before we meet Jeff, if you like this

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01:01:28
podcast, please rate and review us.

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01:01:30
Or if you're watching us on YouTube,

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01:01:32
please like and subscribe.

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01:01:34
Plus, when you sign up for our free

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01:01:35
fresh and nutritious newsletter, you'll

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01:01:36
get all the latest exclusive goodies

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01:01:39
delivered right into your inbox.

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01:01:40
And we want to hear from you.

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01:01:42
Send emails to hosts at growabilitypod

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01:01:43
.com.

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01:01:44
We want your ideas, questions or

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01:01:46
suggestions for guests in future

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01:01:47
episodes.

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01:01:48
And a special thanks to TechAlliance of

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01:01:50
Southwestern Ontario for inviting us to

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01:01:52
use their weirdly perfect space for

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01:01:54
this series of interviews.

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01:01:56
And now let's get this party started

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01:01:57
with Dr. Jeff Preston.

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01:02:00
Jeff, thank you so much for being here

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01:02:02
today.

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01:02:02
Yeah, absolutely.

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01:02:04
I'm so happy to be here.

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01:02:04
And do I have this right?

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01:02:06
Did you start fundraising by doing a

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01:02:09
public speaking gig for Muscular

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01:02:12
Dystrophy?

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Dystrophy, yes.

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01:02:15
Dystrophy, okay.

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01:02:16
Could you tell us a little bit about

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01:02:17
that?

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Yeah, so many moons ago,

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01:02:19
I was just a little child,

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01:02:21
maybe. I was about three years old.

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01:02:23
And there was this volleyball

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01:02:25
tournament in my hometown run

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01:02:27
by the firefighters to raise money

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01:02:29
for muscular dystrophy research.

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01:02:31
And so I was there and

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01:02:33
they asked me, they said, oh, you

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01:02:35
should come up and say something.

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01:02:36
It was my birthday around

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01:02:38
then, right around my birthday.

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01:02:40
So up I went, I got a happy birthday,

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01:02:42
and I thanked people for coming out.

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01:02:44
And that was sort of the beginning of

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01:02:46
the end for me as

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01:02:48
a fundraiser.

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01:02:50
From there, I started going to that

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01:02:52
tournament every year.

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01:02:53
That grew into an

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01:02:55
even bigger event and then eventually

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01:02:57
into working as a poster child

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01:02:59
for MDC and running

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01:03:01
on golf tournaments.

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And kind of never stopped asking

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01:03:04
people for money for the

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rest of my life.

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01:03:07
There's nothing wrong with that.

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No.

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Let's start with some common ground.

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Sure.

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01:03:11
What is a disability?

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That is a fun question.

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So I think there's the definition,

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01:03:17
there's the dictionary definition of

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01:03:19
what we understand to be disability.

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I actually take a very different

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perspective on disabled because

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01:03:25
I think that we focus a lot

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01:03:27
on bodily impairment,

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right? We talk a lot about disease

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01:03:32
and injury and those sorts of things,

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01:03:34
and we understand disability in that

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01:03:35
sense. I actually add another layer to

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01:03:38
it. I actually think that we are

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01:03:39
disabled not just by what is within

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01:03:41
our bodies, but also what we find

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01:03:43
outside in the world beyond us,

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01:03:45
because we have constructed this entire

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01:03:47
world for a certain kind

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01:03:50
of person, which results in

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01:03:52
those who don't fit that category

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01:03:54
or don't fit that ability grouping

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to now be disabled.

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01:03:59
So I would argue that I'm just as

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01:04:01
disabled by muscular dystrophy

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as I am by stairs

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01:04:05
at the front of every building we build

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01:04:07
or very narrow aisles

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01:04:09
in the stores that we construct

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01:04:11
or in the classrooms that we

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design that have steps to get

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up to the tiered seating.

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I think that these factors are just as

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01:04:19
disabling as the physical

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impairment that a doctor says is

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01:04:23
the disability.

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Well, to build off of that, if I may,

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01:04:28
this podcast will drop in 2025.

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01:04:31
Yeah.

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01:04:31
And we as a community

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01:04:33
made

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01:04:35
a vow to have something ready

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01:04:38
by 2025.

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01:04:39
Yeah, yeah.

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01:04:40
Are we there?

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Nope.

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Spoiler alert.

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01:04:45
No.

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01:04:45
We are not.

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01:04:46
Not even close.

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01:04:48
I would say that we've made progress.

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01:04:50
I think it's important for us to

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01:04:52
remember that disability rights and

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01:04:55
the disability rights movement as a

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01:04:57
semi-organized asynchronous

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01:05:00
grouping really

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01:05:02
has only been operating since like

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01:05:05
the 60s, maybe the

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01:05:07
70s, really the 80s,

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01:05:10
which means that we're also one of the

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01:05:12
youngest civil rights movements in

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01:05:14
North America. Having said

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01:05:17
that, if you look at what the world

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01:05:18
looked like when I was born in 1983,

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01:05:20
and you compare that to the

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01:05:22
world that we're entering into in 2025,

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01:05:26
fundamentally it's a different world

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01:05:27
for disabled people.

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01:05:28
We've made incredible gains

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01:05:30
in terms of access

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01:05:32
to programs and services, into access

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01:05:35
to educational opportunities,

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01:05:37
access to employment opportunities.

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01:05:39
There's a really good, happy

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01:05:41
story.

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01:05:42
At the same time, there's

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01:05:44
the fundamental reality that disabled

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01:05:46
people do not experience the

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01:05:48
same life as a non-disabled person

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01:05:50
right now in London, in

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01:05:52
Ontario, in Canada, in

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01:05:55
planet Earth.

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01:05:56
Right. And maybe for

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01:05:58
our listeners and our viewers, we

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01:06:00
should talk about what that community

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01:06:02
vow was.

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01:06:03
Yeah, of course.

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01:06:04
So, again, if we look back,

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01:06:07
flashback, 2005,

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01:06:09
that was actually 2003, 2004, I

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01:06:11
couldn't take when this happened, but I

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01:06:13
remember waking up as a university

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01:06:14
student and I

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01:06:17
flipped on the news in the morning and,

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01:06:19
you know, in my breakfast, and I see

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01:06:21
this big announcement, Ontario

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01:06:22
government promises by 2025,

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01:06:25
Ontario will be fully accessible.

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01:06:28
This was the vow. And we would do it

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01:06:30
through this piece of legislation

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01:06:31
called the AODA, the Accessibility for

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01:06:34
Ontarians with Disabilities Act.

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01:06:36
I remember hearing that news

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01:06:38
and I had this sort of two simultaneous

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01:06:40
thoughts.

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01:06:41
So, on the one thought,

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01:06:43
I was like, wow, that's

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01:06:46
amazing. It's not every day you hear

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01:06:48
about disability news, on the

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01:06:50
news. Often not less stories about

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01:06:52
people like me on the news.

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01:06:54
So, that was interesting.

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01:06:55
Number two, I never

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01:06:57
imagined that I would see a fully

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01:06:59
accessible province in my lifetime.

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01:07:02
Right.

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01:07:02
So, I had sort of assumed that what

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01:07:04
I lived in at that point would be

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01:07:06
what I would live in basically forever,

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01:07:08
that new buildings would be kind of

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01:07:10
accessible, people would do their best,

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01:07:12
but much of this world would remain

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01:07:14
inaccessible and much of the

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01:07:16
accessibility I would have to build for

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01:07:18
myself, but I'd have to bring access

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01:07:20
wherever I went.

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01:07:21
And I suddenly had this moment of

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01:07:23
realization that I wasn't

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01:07:26
experiencing the province in the

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01:07:28
same way that everyone else was.

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01:07:29
And that might seem obvious or

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01:07:31
simplistic, but it has never occurred

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01:07:33
to me that another world was

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01:07:35
possible.

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01:07:36
And so, this promise that we made in

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01:07:38
2005 was a

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01:07:41
remarkable future-looking

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01:07:43
promise that said we

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01:07:46
can, and not just can,

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01:07:48
but should, not just should,

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01:07:50
must do better for

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01:07:52
disabled people in this province.

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01:07:54
That was extremely exciting.

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01:07:57
And so, I said, I want to get involved.

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01:08:00
Can I ask you a sage question?

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01:08:02
Sure.

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01:08:04
Why haven't we made the progress

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01:08:06
we promised in the last 20 years?

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01:08:08
Man, how much time do we have?

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01:08:10
We have about eight hours, I think,

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01:08:12
right? The podcasts are usually about

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01:08:14
eight hours long, I think, usually.

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01:08:16
You know, for when you're driving from

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01:08:18
London to Montreal.

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01:08:21
So, okay, there's a few things.

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01:08:23
So, thing number one, I think

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01:08:25
the AODA got bogged down in politics.

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01:08:27
As everything does.

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01:08:28
Of course.

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01:08:29
And so, there ends up with a lot of

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negotiations that are happening to try

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01:08:32
to get the legislation passed.

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01:08:33
And often, in my opinion,

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01:08:36
humblest of opinions as it is,

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01:08:38
we often lost many of

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01:08:40
those negotiations.

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01:08:42
You have to understand that the AODA is

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01:08:44
a group of

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01:08:46
legislative pieces, standards, that

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01:08:48
were all created by a bunch of

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01:08:50
people together, put them in a room,

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01:08:52
and have them hash out what the

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01:08:53
standard looks like.

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01:08:54
What that meant was that many of

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01:08:56
the standards, all of the standards,

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01:08:58
were created with 50%

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01:09:00
industry, which essentially

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01:09:02
means 50% predominantly

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01:09:04
non-disabled people, and 50%

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01:09:07
disabled people, allies,

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01:09:09
service providers, et cetera.

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01:09:11
What that meant was that for the last

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01:09:13
20 years, disabled people have

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01:09:15
been expected to negotiate the

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01:09:18
definition of accessibility with

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01:09:20
people who stand to benefit

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01:09:22
from reducing the requirements

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01:09:25
of accessibility legislation

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01:09:27
and standards.

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01:09:29
So, quite literally, you're going in

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01:09:30
front of, say, a

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01:09:32
mega corporation who does

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01:09:34
not want to spend any more money on

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01:09:36
accessibility that are trying to keep

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01:09:38
costs down, and you now have to

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01:09:40
argue with that person what

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01:09:42
is or isn't accessible.

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01:09:44
So, I think that was a

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not right way to move forward

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01:09:48
in building these pieces of

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01:09:49
legislation. That slowed us down.

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01:09:52
I think, number two, we were

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01:09:53
dramatically slowed down by

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01:09:55
a lack of funding.

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01:09:56
I don't think the Ontario government

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01:09:58
realized how much it was going

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01:10:00
to cost to become fully

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01:10:03
accessible, quote, unquote.

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01:10:04
It was going to take an enormous amount

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01:10:06
of money, not just for physical

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01:10:08
changes, but also for education,

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01:10:11
also for developing new standards.

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01:10:13
This is something that the world had

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01:10:14
never really done before,

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01:10:17
that Ontario was trying to not just

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01:10:18
invent the wheel, but invent an entire

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01:10:20
vehicle where all they really had were

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01:10:22
stones and a couple chisels and

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01:10:24
axes, right?

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01:10:26
And so, I think that was another issue.

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01:10:27
And I think really the final real

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01:10:30
problem with the AODA is

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01:10:32
that we never were able to come to

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01:10:34
terms with a compliance measure.

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01:10:37
So, the AODA was supposed to have

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01:10:39
teeth. It was supposed to have the

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01:10:41
ability to provide fines and

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01:10:43
to compel people to become

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01:10:45
accessible. The idea being if

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01:10:48
it's more expensive to

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01:10:50
remain inaccessible,

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01:10:52
people will then choose to become

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01:10:54
accessible.

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01:10:55
That's the philosophy.

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01:10:56
The compliance measure didn't really

Speaker:
01:10:57
get off the ground until years

Speaker:
01:11:00
after the legislation was passed.

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01:11:01
And to this day, we actually don't

Speaker:
01:11:03
even necessarily know how

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01:11:06
many organizations have

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01:11:08
been fined under the compliance

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01:11:09
measure. But my sense is,

Speaker:
01:11:12
you could probably count on one or two

Speaker:
01:11:13
hands the number of organizations that

Speaker:
01:11:15
have faced any sort of financial

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01:11:17
penalty, despite the fact

Speaker:
01:11:19
that barriers remain everywhere,

Speaker:
01:11:21
that many organizations are

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01:11:23
non-compliant, whether they know it or

Speaker:
01:11:25
not. And so, that inability to compel

Speaker:
01:11:27
people to even follow the rules that

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01:11:29
do exist has meant that we've

Speaker:
01:11:31
been extremely slow out

Speaker:
01:11:34
of the gate to try to build an

Speaker:
01:11:35
accessible province.

Speaker:
01:11:37
I feel there's a huge value proposition

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01:11:39
in meeting the standards.

Speaker:
01:11:41
Am I wrong on that?

Speaker:
01:11:43
Absolutely. Absolutely.

Speaker:
01:11:45
I don't think that people realize how

Speaker:
01:11:47
big the disabled population is,

Speaker:
01:11:49
right? So, Statistics Canada tells us

Speaker:
01:11:51
somewhere around 20% to 25%

Speaker:
01:11:53
of Canadians identify with a

Speaker:
01:11:55
disability.

Speaker:
01:11:56
Most researchers, myself included,

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01:11:58
believe that number is actually

Speaker:
01:11:59
probably too low,

Speaker:
01:12:01
that it actually is probably much

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01:12:03
higher.

Speaker:
01:12:04
Now, it depended, again, as you say,

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01:12:06
how you define what a disability is.

Speaker:
01:12:08
But the reality is there are disabled

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01:12:10
people everywhere.

Speaker:
01:12:11
There are disabled people that want to

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01:12:13
participate in our society, who

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01:12:15
wish to get jobs, who wish to

Speaker:
01:12:17
spend the money that they earn at those

Speaker:
01:12:19
jobs, that want to live a life just as

Speaker:
01:12:21
any other Ontarian.

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01:12:23
And so, if you are a business, for

Speaker:
01:12:25
instance, and you go the extra step to

Speaker:
01:12:27
become accessible, you've now opened

Speaker:
01:12:29
yourself up to not just new

Speaker:
01:12:31
consumers, but new consumers who

Speaker:
01:12:33
have very few options in terms of

Speaker:
01:12:35
where they may want to go to shop.

Speaker:
01:12:37
So, I think that there's this economic

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01:12:38
benefit to it.

Speaker:
01:12:40
There's also the downstream benefit of

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01:12:42
accessibility when we don't

Speaker:
01:12:44
necessarily know what the future is

Speaker:
01:12:45
going to hold. And so, what if you

Speaker:
01:12:48
or one of your employees encounters

Speaker:
01:12:50
a disability? What if they get an

Speaker:
01:12:51
injury or something happens?

Speaker:
01:12:54
And now you have an employee who

Speaker:
01:12:56
may not be able to work in your space

Speaker:
01:12:58
because your space isn't accessible.

Speaker:
01:13:00
And if they leave that job, they're

Speaker:
01:13:02
taken with them all of that

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01:13:04
institutional knowledge, all of that

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01:13:06
training, all of that quality skill

Speaker:
01:13:07
that has been built up during

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01:13:09
their employment.

Speaker:
01:13:11
So, for me, I look at accessibility not

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01:13:13
just as opening up new markets, not

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01:13:15
just opening up new opportunities

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01:13:17
for new customers, but I see

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01:13:19
it also as future-proofing yourself

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01:13:21
from the magic reality

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01:13:23
that is the human body is

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01:13:25
fragile, it is vulnerable, and

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01:13:27
it is subject to change throughout all

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01:13:29
of our lives.

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01:13:30
Is this exclusive to

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01:13:32
Ontario or is this everywhere?

Speaker:
01:13:34
Or is there a sliding scale?

Speaker:
01:13:36
This is a real fun question.

Speaker:
01:13:38
So, in Canada, we have a

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01:13:40
patchwork of accessibility law.

Speaker:
01:13:41
So, every province does it different,

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01:13:43
and everyone is kind of approaching

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01:13:45
this from a similar, but not similar

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01:13:48
at all sort of perspective.

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01:13:49
And you've got a bunch of other

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01:13:51
interconnecting industries,

Speaker:
01:13:53
organizations, sectors, that

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01:13:55
are very different from province to

Speaker:
01:13:57
province, right? So, the way that they

Speaker:
01:13:58
do medicine in Alberta is different

Speaker:
01:14:00
than the way they do medicine in

Speaker:
01:14:02
Ontario, which is different than how

Speaker:
01:14:03
it's done in Quebec and different how

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01:14:05
it's done in BC.

Speaker:
01:14:06
And so, all of those programs and

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01:14:08
services, whether it comes down to

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01:14:09
therapy, access to adaptive devices,

Speaker:
01:14:12
occupational therapists, physical

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01:14:13
therapists, speech language pathology,

Speaker:
01:14:15
all these different sort of factors,

Speaker:
01:14:17
that is done differently in many of

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01:14:20
our provinces.

Speaker:
01:14:21
And so, too, is accessibility

Speaker:
01:14:23
legislation.

Speaker:
01:14:24
For a lot of provinces are looking

Speaker:
01:14:26
on Ontario.

Speaker:
01:14:28
A lot of Canada looks at

Speaker:
01:14:30
Ontario and says, what did you do for

Speaker:
01:14:32
the AODA?

Speaker:
01:14:33
We want to do something similar, but we

Speaker:
01:14:35
also don't want to make the mistakes we

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01:14:36
made. And so, we are sort of

Speaker:
01:14:38
trailblazing in Ontario in that sense.

Speaker:
01:14:40
But the problem then means that if

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01:14:42
I were to pick up shop and move

Speaker:
01:14:44
somewhere else in Canada, I would

Speaker:
01:14:46
actually have a radically different

Speaker:
01:14:47
experience from one province to

Speaker:
01:14:49
another, which begs the question,

Speaker:
01:14:51
do disabled Canadians enjoy

Speaker:
01:14:53
the human right, the enshrined right

Speaker:
01:14:55
in Canada of free movement?

Speaker:
01:14:58
We are supposed to be able to move

Speaker:
01:14:59
anywhere in our country as

Speaker:
01:15:02
Canadians. I would argue we

Speaker:
01:15:04
don't have that as disabled people.

Speaker:
01:15:06
So much great insight.

Speaker:
01:15:08
You're currently a professor of

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01:15:09
disability studies at King's

Speaker:
01:15:12
University in London, but

Speaker:
01:15:14
you have a Master's and a Doctorate

Speaker:
01:15:16
in media studies.

Speaker:
01:15:17
What's the connection there?

Speaker:
01:15:18
Yeah, absolutely.

Speaker:
01:15:19
So, growing up, I was doing a lot of

Speaker:
01:15:21
media work as I was doing my

Speaker:
01:15:23
fundraising. I was doing some TV stuff,

Speaker:
01:15:25
doing lots of radio stuff, doing lots

Speaker:
01:15:27
of public speeches, and I became really

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01:15:29
interested in media.

Speaker:
01:15:31
So, I actually thought that I wanted to

Speaker:
01:15:32
be a journalist.

Speaker:
01:15:33
That was my dream originally.

Speaker:
01:15:35
I loved the guys that I was meeting in

Speaker:
01:15:37
the radio world, loved the women that

Speaker:
01:15:39
was meeting in journalism,

Speaker:
01:15:41
and I thought- in print journalism,

Speaker:
01:15:44
I thought maybe this is for me.

Speaker:
01:15:45
Maybe I should do this.

Speaker:
01:15:46
So, I go to school for media studies.

Speaker:
01:15:49
I do an internship at a local

Speaker:
01:15:50
newspaper- two months,

Speaker:
01:15:52
and I was like, nope, I

Speaker:
01:15:55
do not want to be a journalist.

Speaker:
01:15:57
Not for me.

Speaker:
01:15:58
Way too much hate mail.

Speaker:
01:16:00
Not interested.

Speaker:
01:16:01
So, I was like, no, that isn't for me.

Speaker:
01:16:03
But as I started university here

Speaker:
01:16:05
in London, I fell in love with

Speaker:
01:16:07
school.

Speaker:
01:16:08
I was not a school kid growing

Speaker:
01:16:11
up. I did not like school.

Speaker:
01:16:13
I was the kid who, like, every morning

Speaker:
01:16:15
it was, mom, I think I'm sick.

Speaker:
01:16:17
She's like, I'm sure you are.

Speaker:
01:16:18
Off you go. Go to school.

Speaker:
01:16:20
When I got to university, though, I

Speaker:
01:16:21
actually fell in love with education.

Speaker:
01:16:23
I fell in love with the pursuit of

Speaker:
01:16:25
knowledge.

Speaker:
01:16:26
And I remember being in the first year

Speaker:
01:16:28
of class, I'm looking at a professor,

Speaker:
01:16:31
the sage on the stage, and I'm

Speaker:
01:16:33
thinking, I want to

Speaker:
01:16:35
do this. I want to be a teacher.

Speaker:
01:16:36
I want to teach people.

Speaker:
01:16:37
I want to research.

Speaker:
01:16:38
I want to learn new things and share

Speaker:
01:16:40
that information with the world.

Speaker:
01:16:42
And that's when I began to start this

Speaker:
01:16:43
pursuit. And so, my original

Speaker:
01:16:46
research was really focused on

Speaker:
01:16:47
understanding how disability is

Speaker:
01:16:49
represented in popular culture.

Speaker:
01:16:51
I was fascinated in the disconnect

Speaker:
01:16:53
between the stories we tell in

Speaker:
01:16:55
the media versus the lived reality

Speaker:
01:16:57
of disability, which often were,

Speaker:
01:17:00
paradoxically,

Speaker:
01:17:02
completely incongruent.

Speaker:
01:17:04
And so, that was really sort of the

Speaker:
01:17:06
early days of my research.

Speaker:
01:17:08
I was trying to understand that

Speaker:
01:17:09
question.

Speaker:
01:17:10
And it's from there that I then got

Speaker:
01:17:12
sucked into this world, this new field

Speaker:
01:17:14
of study called disability studies,

Speaker:
01:17:16
or now, critical disability studies.

Speaker:
01:17:18
I don't know who you talk to.

Speaker:
01:17:20
And so, I started bringing that work

Speaker:
01:17:22
into the world of media studies,

Speaker:
01:17:24
trying to mash together this cultural

Speaker:
01:17:26
theory with disability studies and

Speaker:
01:17:28
critical disability theory, bringing

Speaker:
01:17:30
them together to try to have a new way

Speaker:
01:17:32
of thinking about how we tell stories

Speaker:
01:17:34
about disability, how we imagine

Speaker:
01:17:36
disability, and how that cultural

Speaker:
01:17:38
construction of disability actually

Speaker:
01:17:40
really matters because the

Speaker:
01:17:42
way we talk about disability influences

Speaker:
01:17:45
what we do about it.

Speaker:
01:17:46
And that includes things like

Speaker:
01:17:48
legislation, like the AODA.

Speaker:
01:17:50
Absolutely.

Speaker:
01:17:51
We need knowledgeable teachers.

Speaker:
01:17:53
We need, I use this word

Speaker:
01:17:55
and you used this word, sages.

Speaker:
01:17:56
Right.

Speaker:
01:17:57
There's also a component of

Speaker:
01:17:59
representation.

Speaker:
01:18:00
Yeah.

Speaker:
01:18:01
How important is representation?

Speaker:
01:18:04
Unbelievably important, I would say.

Speaker:
01:18:06
I think it's critical.

Speaker:
01:18:07
I'm biased, of course.

Speaker:
01:18:08
I'm a media studies scholar.

Speaker:
01:18:09
So, of course, I'm going to say it's

Speaker:
01:18:10
the most important thing.

Speaker:
01:18:12
But I think that representation

Speaker:
01:18:14
genuinely really matters because I

Speaker:
01:18:16
think that representation not

Speaker:
01:18:18
just allows us to tell our own

Speaker:
01:18:20
story, to give legitimacy to

Speaker:
01:18:23
lives with disabilities, to say that

Speaker:
01:18:25
this is a real experience and it

Speaker:
01:18:27
matters, that there's meaning in

Speaker:
01:18:29
it. And it's meaning that we, the

Speaker:
01:18:31
disabled, should be creating,

Speaker:
01:18:34
that we should be the ones telling that

Speaker:
01:18:35
story.

Speaker:
01:18:36
But I think that stories also provide

Speaker:
01:18:37
us that opportunity to invite people

Speaker:
01:18:39
in to our lives, to invite

Speaker:
01:18:41
people into our experience, not

Speaker:
01:18:44
in the sense of like walk a mile in our

Speaker:
01:18:46
shoes, but at least to get insight,

Speaker:
01:18:48
to develop empathy for

Speaker:
01:18:50
a different way of living, right?

Speaker:
01:18:52
Right.

Speaker:
01:18:53
And so, I think that media has this

Speaker:
01:18:54
powerful ability to actually

Speaker:
01:18:56
invite people to

Speaker:
01:18:58
our worlds, to form mutual

Speaker:
01:19:00
relationships into

Speaker:
01:19:02
different worlds, different ways

Speaker:
01:19:04
of being.

Speaker:
01:19:05
And I think more than anything,

Speaker:
01:19:07
media is fantasy, right?

Speaker:
01:19:10
Yes.

Speaker:
01:19:11
We often tell stories about the world

Speaker:
01:19:12
that we live in, but we often tell

Speaker:
01:19:14
stories about the world that we wish we

Speaker:
01:19:16
lived in, about a world that we aspire

Speaker:
01:19:18
to live in.

Speaker:
01:19:19
Because in media, movie magic

Speaker:
01:19:21
says that anything is possible.

Speaker:
01:19:25
And so, something I think that's really

Speaker:
01:19:26
fascinating is how as

Speaker:
01:19:28
we build and tell stories about

Speaker:
01:19:30
disability, how can we also

Speaker:
01:19:32
be telling and showing a

Speaker:
01:19:34
universally accessible world in

Speaker:
01:19:36
a way that's not possible in the

Speaker:
01:19:39
real world? And how can that then be

Speaker:
01:19:41
something that we aspire to?

Speaker:
01:19:42
In the same way that you look at

Speaker:
01:19:43
something like Star Trek, which has

Speaker:
01:19:45
inspired countless technical

Speaker:
01:19:47
innovations.

Speaker:
01:19:48
Absolutely.

Speaker:
01:19:48
Because it said, this is what the

Speaker:
01:19:50
future could look like.

Speaker:
01:19:51
And an engineer says, I'm

Speaker:
01:19:53
going to figure out how to make that

Speaker:
01:19:54
happen.

Speaker:
01:19:55
Right.

Speaker:
01:19:55
I'm going to make that iPad,

Speaker:
01:19:57
essentially, that I saw on Star Trek.

Speaker:
01:20:00
I think that the same could be done

Speaker:
01:20:01
with accessibility and inclusion.

Speaker:
01:20:04
I really like that perspective a lot,

Speaker:
01:20:05
actually. Yeah, it's beautiful.

Speaker:
01:20:08
Groups like the Disability Screen

Speaker:
01:20:10
Office and companies like Accessible

Speaker:
01:20:12
Media Inc. have taken a

Speaker:
01:20:13
nothing-about-us-without-us approach

Speaker:
01:20:16
to disabled representation in the

Speaker:
01:20:18
media. Is this the right path forward,

Speaker:
01:20:20
would you think?

Speaker:
01:20:20
Absolutely. Yeah, we need to get more

Speaker:
01:20:22
disabled people involved.

Speaker:
01:20:23
I actually wonder how many flubs,

Speaker:
01:20:27
when it comes to telling stories about

Speaker:
01:20:28
disability, how many of those flubs are

Speaker:
01:20:30
generated by the fact that no

Speaker:
01:20:32
one involved in this production

Speaker:
01:20:34
actually had a disability.

Speaker:
01:20:36
And so, there are all these things that

Speaker:
01:20:38
you see. For instance, I see

Speaker:
01:20:40
a lot of people in wheelchairs that

Speaker:
01:20:42
do not make sense in the

Speaker:
01:20:44
real world, right? So, I have a

Speaker:
01:20:45
character, and they'll be in this

Speaker:
01:20:47
rickety hospital chair.

Speaker:
01:20:48
And I'm like, no, a guy

Speaker:
01:20:50
with a spinal cord injury like that,

Speaker:
01:20:52
they are not going to be rolling around

Speaker:
01:20:53
in this heavy, clunky hospital chair.

Speaker:
01:20:55
They're going to be in a light,

Speaker:
01:20:56
titanium, ergodynamic thing,

Speaker:
01:20:59
right?

Speaker:
01:20:59
Right.

Speaker:
01:20:59
Absolutely. Of course they would be.

Speaker:
01:21:01
Why would they be in this unaesthetic

Speaker:
01:21:03
chair?

Speaker:
01:21:04
And so, I think that there is this sort

Speaker:
01:21:06
of reality that you can be brought

Speaker:
01:21:08
in by having people actually

Speaker:
01:21:10
there to say, actually, that's

Speaker:
01:21:12
not what that's like.

Speaker:
01:21:14
Right.

Speaker:
01:21:14
So, to give you an example, I have a

Speaker:
01:21:16
buddy named Josh Cassidy.

Speaker:
01:21:18
He and I grew up together.

Speaker:
01:21:20
We went in very different paths.

Speaker:
01:21:21
I went to be an academic.

Speaker:
01:21:22
He became a Paralympian.

Speaker:
01:21:24
And so, he is a Paralympic wheelchair

Speaker:
01:21:26
racer. And in his spare time,

Speaker:
01:21:28
he does media.

Speaker:
01:21:30
And so, he was in a Hallmark movie.

Speaker:
01:21:31
He was hired as a- He's a secondary,

Speaker:
01:21:34
he wasn't the main character.

Speaker:
01:21:36
He was buddies of the main character.

Speaker:
01:21:38
So, this is a Christmas movie, rom-com,

Speaker:
01:21:40
you know, Hallmark.

Speaker:
01:21:41
What was fascinating for him in this

Speaker:
01:21:43
process, as he shares with me,

Speaker:
01:21:46
is that throughout the process, the

Speaker:
01:21:48
director was asking him constantly,

Speaker:
01:21:50
is this right?

Speaker:
01:21:52
Do we have this right?

Speaker:
01:21:53
And so, there was one scene in

Speaker:
01:21:54
particular where he goes to a

Speaker:
01:21:56
cafe and he has to enter the cafe,

Speaker:
01:21:59
order a coffee, go and sit down, and

Speaker:
01:22:01
then he has a conversation.

Speaker:
01:22:03
And so, while they were doing it, Josh

Speaker:
01:22:04
was saying, he's like, oh, no, like,

Speaker:
01:22:06
I wouldn't order this way.

Speaker:
01:22:08
This isn't how I order.

Speaker:
01:22:09
They had it all set up where they had a

Speaker:
01:22:10
whole thing. It wasn't right.

Speaker:
01:22:12
It didn't feel natural to what he would

Speaker:
01:22:14
do as a wheelchair user.

Speaker:
01:22:16
And so, they said, great, well,

Speaker:
01:22:18
show us. Show us what you would do.

Speaker:
01:22:20
And so, they walked through the steps.

Speaker:
01:22:21
They adapted the scene.

Speaker:
01:22:22
They changed the format of it.

Speaker:
01:22:24
And as a result, they got something

Speaker:
01:22:25
that was actually authentic to what a

Speaker:
01:22:27
wheelchair user would experience as

Speaker:
01:22:28
they're moving in and out of a

Speaker:
01:22:30
coffee shop, right?

Speaker:
01:22:32
And so, I think having that on the

Speaker:
01:22:34
ground insight is actually really

Speaker:
01:22:36
important, and it cannot be replicated.

Speaker:
01:22:39
You can't just hire an expert.

Speaker:
01:22:40
You've got to have lots of different

Speaker:
01:22:42
voices, lots of different experiences

Speaker:
01:22:44
to be able to make better

Speaker:
01:22:46
choices.

Speaker:
01:22:47
Now, I feel this

Speaker:
01:22:50
director may be a unicorn.

Speaker:
01:22:52
Hah! Yes, yes.

Speaker:
01:22:54
I think there

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01:22:57
may be a misjudgment of

Speaker:
01:23:00
abilities.

Speaker:
01:23:01
You know, when we look at

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01:23:02
abilities-first.

Speaker:
01:23:05
I shouldn't say when we look at

Speaker:
01:23:06
abilities-first. People should look at

Speaker:
01:23:07
abilities-first.

Speaker:
01:23:08
Yeah.

Speaker:
01:23:09
How do you feel?

Speaker:
01:23:11
Do you feel that there is a misjudgment

Speaker:
01:23:12
of ability based on

Speaker:
01:23:15
maybe people that,

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01:23:17
you know, physical,

Speaker:
01:23:20
for instance?

Speaker:
01:23:21
Oh, big time, yeah.

Speaker:
01:23:22
I think that one of the things we hear

Speaker:
01:23:24
a lot when it comes to sort of bigger

Speaker:
01:23:26
media productions, we're looking at

Speaker:
01:23:28
Hollywood, Toronto, British

Speaker:
01:23:30
Columbia, the sort of the major

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01:23:31
producers.

Speaker:
01:23:33
There is this belief that not

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01:23:35
only will it be more expensive to have

Speaker:
01:23:37
a disabled actor or a disabled cast

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01:23:38
member, they believe that they

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01:23:41
will be slower to change.

Speaker:
01:23:42
I've heard people not getting roles

Speaker:
01:23:44
because they thought it would take them

Speaker:
01:23:46
too long to change costumes.

Speaker:
01:23:49
And they're like, you know, time is

Speaker:
01:23:50
money, we can't wait.

Speaker:
01:23:51
I mean, not necessarily.

Speaker:
01:23:54
For some, maybe not necessarily.

Speaker:
01:23:56
A really fun example, I think, of this

Speaker:
01:23:58
is Jared Leto, which literally

Speaker:
01:24:01
no one has ever said, fun example, and

Speaker:
01:24:03
Jared Leto in the same sentence.

Speaker:
01:24:04
No, this is the first, not just on

Speaker:
01:24:06
this podcast, but universally.

Speaker:
01:24:08
Generationally, this has never happened

Speaker:
01:24:09
together.

Speaker:
01:24:12
So Jared Leto was

Speaker:
01:24:14
in this movie, Morpheus, which

Speaker:
01:24:16
is historically one of the

Speaker:
01:24:18
worst movies ever made.

Speaker:
01:24:19
I've heard that.

Speaker:
01:24:20
Not great.

Speaker:
01:24:22
But in this, he is a character who uses

Speaker:
01:24:24
a wheelchair, and Jared Leto was

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01:24:26
famously a method actor.

Speaker:
01:24:28
And what's fascinating is if you hear

Speaker:
01:24:30
some of the stories from the

Speaker:
01:24:32
set, it was a

Speaker:
01:24:34
nightmare because Jared Leto was

Speaker:
01:24:36
taking like two hours

Speaker:
01:24:38
to go pee.

Speaker:
01:24:39
He was taking an inordinate amount of

Speaker:
01:24:41
time. He was driving himself

Speaker:
01:24:43
and limping his way and

Speaker:
01:24:45
really exaggerated all these physical

Speaker:
01:24:47
abilities. There was a negotiation.

Speaker:
01:24:49
And they finally got him to agree to

Speaker:
01:24:51
use a wheelchair to go from point

Speaker:
01:24:53
to point to try to speed up the

Speaker:
01:24:55
transit or whatever.

Speaker:
01:24:57
And what I find fun about this, and

Speaker:
01:24:59
I mean, you're going to be like, Jeff,

Speaker:
01:25:01
that isn't fun at all, you're the

Speaker:
01:25:02
worst, what is wrong with you?

Speaker:
01:25:04
But what I find fun about it is that

Speaker:
01:25:05
I've been.

Speaker:
01:25:05
We'll sign a a petition.

Speaker:
01:25:06
Yeah, exactly.

Speaker:
01:25:08
Cancel Jeff Preston.

Speaker:
01:25:11
But I think that Jared Leto is

Speaker:
01:25:13
pantomiming all

Speaker:
01:25:15
of the negative understandings of

Speaker:
01:25:17
what we think disability is,

Speaker:
01:25:20
right? That it's slow, that it's

Speaker:
01:25:22
agony.

Speaker:
01:25:23
He was pretty mean on set, apparently.

Speaker:
01:25:25
There's a bitterness involved.

Speaker:
01:25:28
And so I think this is such a perfect

Speaker:
01:25:30
example because I think Jared

Speaker:
01:25:32
Leto unintentionally was reflecting

Speaker:
01:25:34
exactly how we

Speaker:
01:25:37
understand- or think we understand

Speaker:
01:25:39
disability, which is not

Speaker:
01:25:41
at all the reality for most

Speaker:
01:25:43
people with disabilities.

Speaker:
01:25:44
In fact, I would argue barely any.

Speaker:
01:25:46
When people talk about diversity,

Speaker:
01:25:48
equity, and inclusion, they

Speaker:
01:25:50
often hold race, gender, and other

Speaker:
01:25:52
forms of ethnographic equity in

Speaker:
01:25:54
mind.

Speaker:
01:25:55
Is ableism and disability part of the

Speaker:
01:25:58
DEI conversation?

Speaker:
01:25:59
It needs to be.

Speaker:
01:26:00
It absolutely needs to be, 100%.

Speaker:
01:26:03
I think that often it falls a little

Speaker:
01:26:05
bit off the radar.

Speaker:
01:26:06
But it needs to be there, and it

Speaker:
01:26:08
especially needs to be there because

Speaker:
01:26:10
of the intersectional nature of

Speaker:
01:26:12
disability, that disability

Speaker:
01:26:15
is a factor that could

Speaker:
01:26:17
apply to anybody.

Speaker:
01:26:19
Every race, every age,

Speaker:
01:26:21
every religious background, every

Speaker:
01:26:23
gender, anyone can have a

Speaker:
01:26:25
disability.

Speaker:
01:26:26
And with that comes very different

Speaker:
01:26:28
experiences.

Speaker:
01:26:29
So my experience as a white man,

Speaker:
01:26:31
middle-aged, educated with a physical

Speaker:
01:26:34
disability is going to be radically

Speaker:
01:26:36
different than somebody with a

Speaker:
01:26:37
different set of intersecting identity

Speaker:
01:26:40
factors. That to me means

Speaker:
01:26:42
that ableism and accessibility

Speaker:
01:26:44
actually needs to sit at the base

Speaker:
01:26:46
of our EDI work.

Speaker:
01:26:48
Rather than being something that we

Speaker:
01:26:49
tack on after the fact,

Speaker:
01:26:52
accessibility and ableism and

Speaker:
01:26:53
anti-ableism in general should actually

Speaker:
01:26:55
be sitting at the base of our EDI work,

Speaker:
01:26:57
upon which we build everything

Speaker:
01:26:59
else. Because disability is

Speaker:
01:27:02
everywhere.

Speaker:
01:27:04
Whether we want to believe it or

Speaker:
01:27:06
not, we are everywhere,

Speaker:
01:27:08
and we always have been.

Speaker:
01:27:09
I mean, find me a historical figure,

Speaker:
01:27:12
and I will find you a disabled person.

Speaker:
01:27:14
Absolutely.

Speaker:
01:27:15
When it comes to inclusion, I've heard

Speaker:
01:27:17
you talk about a lack of accessibility

Speaker:
01:27:19
being a form of censorship.

Speaker:
01:27:21
Right.

Speaker:
01:27:21
Can you unpack what that means?

Speaker:
01:27:23
Yeah, absolutely.

Speaker:
01:27:24
So I think that something that is

Speaker:
01:27:26
fascinating is how

Speaker:
01:27:28
we assume that disabled people don't

Speaker:
01:27:30
exist.

Speaker:
01:27:31
And we assume that they don't exist

Speaker:
01:27:32
because we don't see them.

Speaker:
01:27:35
I've often joked that if I were to ever

Speaker:
01:27:36
write a memoir, and I shouldn't, my

Speaker:
01:27:38
life has been fairly boring, but

Speaker:
01:27:41
if ever did, the title of my memoir

Speaker:
01:27:43
would be The Only Guy in a Wheelchair

Speaker:
01:27:45
in the Room.

Speaker:
01:27:45
Because very often when I'm in rooms,

Speaker:
01:27:48
I am the only person in

Speaker:
01:27:50
a wheelchair, which seems statistically

Speaker:
01:27:52
impossible.

Speaker:
01:27:54
It seems very unlikely that

Speaker:
01:27:56
every time I go to the movie theater, I

Speaker:
01:27:58
would be the only wheelchair user

Speaker:
01:28:00
rolling up to Cineplex.

Speaker:
01:28:02
The only, when I roll up to the Grand

Speaker:
01:28:04
Theater, that there's no one else in

Speaker:
01:28:06
that wheelchair section.

Speaker:
01:28:07
It seems very strange.

Speaker:
01:28:11
But I think of it a little bit

Speaker:
01:28:12
differently.

Speaker:
01:28:13
So the metaphor that I use is

Speaker:
01:28:16
that movie Field of Dreams.

Speaker:
01:28:18
I don't know if you know that old movie.

Speaker:
01:28:19
I know that one.

Speaker:
01:28:20
It's a baseball movie.

Speaker:
01:28:21
It's a good one.

Speaker:
01:28:21
Right?

Speaker:
01:28:22
One of the things in the movie is that

Speaker:
01:28:24
there's all these ghosts.

Speaker:
01:28:25
They're in the cornfield.

Speaker:
01:28:26
And no one knows the ghosts are in the

Speaker:
01:28:28
cornfield, but they're there.

Speaker:
01:28:29
And the sort of saying in the movie is,

Speaker:
01:28:31
if you build it, they will come.

Speaker:
01:28:34
And this is how I think about

Speaker:
01:28:35
accessibility, is that disabled people,

Speaker:
01:28:37
we are the ghosts in the cornfield.

Speaker:
01:28:40
You don't know us, but we're out there.

Speaker:
01:28:41
We are haunting these spaces outside

Speaker:
01:28:43
of your sight.

Speaker:
01:28:44
But when you build accessible, when

Speaker:
01:28:46
you add accessibility features to your

Speaker:
01:28:48
spaces, suddenly

Speaker:
01:28:50
they show up.

Speaker:
01:28:52
Suddenly there are disabled people kind

Speaker:
01:28:54
of everywhere.

Speaker:
01:28:55
And so what I ask us to think about

Speaker:
01:28:57
always is who

Speaker:
01:28:59
is in the room and who is

Speaker:
01:29:01
not, and why?

Speaker:
01:29:03
But if they're not in the room,

Speaker:
01:29:06
they're not a part of the conversation.

Speaker:
01:29:07
Right.

Speaker:
01:29:08
So there was a study recently done of

Speaker:
01:29:10
people working in the Ontario

Speaker:
01:29:11
government.

Speaker:
01:29:13
And that study found, this is

Speaker:
01:29:15
self-disclosure, but it found

Speaker:
01:29:17
that there's less than 5%

Speaker:
01:29:19
of disabled people that are operating

Speaker:
01:29:20
within our government structure right

Speaker:
01:29:22
now, which means that 20%

Speaker:
01:29:24
of the population is not really

Speaker:
01:29:26
getting a fair representation in our

Speaker:
01:29:29
government.

Speaker:
01:29:30
And so when you think about censorship,

Speaker:
01:29:32
who is not in the room?

Speaker:
01:29:35
Who is not voicing their opinion at

Speaker:
01:29:37
Queen's Park?

Speaker:
01:29:38
Disabled people.

Speaker:
01:29:40
That's right.

Speaker:
01:29:40
Predominantly.

Speaker:
01:29:41
And if we are not there to speak,

Speaker:
01:29:43
perhaps that explains why there wasn't

Speaker:
01:29:45
urgency to pass compliance

Speaker:
01:29:48
measures for the AODA.

Speaker:
01:29:49
Maybe that explains why there wasn't

Speaker:
01:29:51
urgency to pass the

Speaker:
01:29:53
post-secondary standard or the

Speaker:
01:29:55
hospital education, sorry,

Speaker:
01:29:58
healthcare standard of the AODA.

Speaker:
01:30:00
Maybe that's why there isn't any real

Speaker:
01:30:02
concern that we're not going to

Speaker:
01:30:04
meet our standard,

Speaker:
01:30:06
our fully accessible Ontario by 2025.

Speaker:
01:30:10
If we're not there, we cannot speak.

Speaker:
01:30:12
And if we're not speaking, we cannot be

Speaker:
01:30:14
heard. And if we're not heard,

Speaker:
01:30:16
nothing will change.

Speaker:
01:30:17
Can I ask you a naive question?

Speaker:
01:30:19
Please, I'd love that.

Speaker:
01:30:20
Those are actually great questions.

Speaker:
01:30:22
You've done really good.

Speaker:
01:30:24
Why can't people just follow your

Speaker:
01:30:26
blueprint?

Speaker:
01:30:26
Well,

Speaker:
01:30:29
it would be bad.

Speaker:
01:30:30
It would be a bad choice.

Speaker:
01:30:32
My life is littered with mistakes.

Speaker:
01:30:35
I am here because of the mistakes I've

Speaker:
01:30:37
made, which is a good thing,

Speaker:
01:30:39
I think, actually, in many ways.

Speaker:
01:30:42
You know, I enrolled at Western.

Speaker:
01:30:44
I believed I had been enrolled into

Speaker:
01:30:46
a web design program, and

Speaker:
01:30:48
I arrived and learned that it was not a

Speaker:
01:30:50
web design program, but I fell in love

Speaker:
01:30:52
with it and got a PhD.

Speaker:
01:30:54
I was like, I'm going to be a

Speaker:
01:30:56
university professor. This is what I

Speaker:
01:30:58
want to do. I graduate with a PhD,

Speaker:
01:31:00
and I got not a lot of tenure-track

Speaker:
01:31:02
jobs in this world of university

Speaker:
01:31:04
anymore. And I got hired at Fanshawe

Speaker:
01:31:06
College, and I'm like, this

Speaker:
01:31:08
is the best. I love it.

Speaker:
01:31:10
This college stuff is amazing.

Speaker:
01:31:11
I love this classroom.

Speaker:
01:31:12
I love the students that are here.

Speaker:
01:31:14
This is sweet. I never want to leave.

Speaker:
01:31:17
And then two years later, I see a job

Speaker:
01:31:19
posted for disability studies at

Speaker:
01:31:20
King's, and I did leave college.

Speaker:
01:31:23
And so, I don't know that

Speaker:
01:31:25
people want to follow my blueprint,

Speaker:
01:31:26
necessarily.

Speaker:
01:31:28
But I do think that we have to remember

Speaker:
01:31:30
that I, myself, have an enormous

Speaker:
01:31:33
amount of privilege.

Speaker:
01:31:34
I've been extremely lucky

Speaker:
01:31:36
to be where I am today.

Speaker:
01:31:38
I would not have been here without

Speaker:
01:31:40
an enormous amount of luck, without an

Speaker:
01:31:42
enormous amount of public support, and

Speaker:
01:31:45
without some really key advantages

Speaker:
01:31:47
that I received when I was born.

Speaker:
01:31:49
Namely, I was born with a physical

Speaker:
01:31:50
disability.

Speaker:
01:31:52
I've had my disability my entire life,

Speaker:
01:31:54
so there was no adaptation for me.

Speaker:
01:31:56
This has always been normal.

Speaker:
01:31:58
There hasn't been anything different

Speaker:
01:31:59
than using a wheelchair.

Speaker:
01:32:00
It's who I am. It's part of me.

Speaker:
01:32:03
I was very lucky to start talking

Speaker:
01:32:05
young and to be doing public speeches

Speaker:
01:32:07
when I was five, six years old,

Speaker:
01:32:09
developing that skill, that ability to

Speaker:
01:32:11
articulate myself, being kind

Speaker:
01:32:13
of smart, being able to navigate

Speaker:
01:32:15
school well, having two gainfully

Speaker:
01:32:18
employed parents with good insurance

Speaker:
01:32:20
that were well-known and well-respected

Speaker:
01:32:22
in the community, that had a ton

Speaker:
01:32:24
of community members that rallied

Speaker:
01:32:25
behind our family to help us when we

Speaker:
01:32:28
couldn't afford the things I needed to

Speaker:
01:32:30
live independently, get it into the

Speaker:
01:32:31
good school.

Speaker:
01:32:32
Having London similarly accept

Speaker:
01:32:34
me and wrap around me in

Speaker:
01:32:36
the way that Port Elgin did.

Speaker:
01:32:38
I've been uniquely extremely

Speaker:
01:32:41
lucky, and I'm absolutely

Speaker:
01:32:43
so grateful and thankful for everyone

Speaker:
01:32:45
that's made my life possible.

Speaker:
01:32:47
What horrifies me is the

Speaker:
01:32:50
number of people that don't have that,

Speaker:
01:32:51
that do not have the access that I've

Speaker:
01:32:54
had, that haven't had the privileges

Speaker:
01:32:55
that I've had in my life.

Speaker:
01:32:57
And so people will look at me and say,

Speaker:
01:32:59
well, Jeff Preston, he's a PhD.

Speaker:
01:33:01
He's living independently.

Speaker:
01:33:02
He's doing great. He's got a van.

Speaker:
01:33:04
That was not without an enormous

Speaker:
01:33:06
amount of work and predominantly not by

Speaker:
01:33:08
me and by people around me that cared

Speaker:
01:33:10
about me, that wanted to see me do

Speaker:
01:33:12
better.

Speaker:
01:33:13
And unfortunately, not everyone has

Speaker:
01:33:15
that.

Speaker:
01:33:16
And so for me, I think a better

Speaker:
01:33:18
way of looking at it is not how can

Speaker:
01:33:20
people follow in my footsteps, but

Speaker:
01:33:22
rather how can my footsteps provide

Speaker:
01:33:25
a pathway for

Speaker:
01:33:27
more people to follow behind me,

Speaker:
01:33:29
so that they don't need to be lucky.

Speaker:
01:33:32
They can just be themselves,

Speaker:
01:33:34
and they can thrive in this world like

Speaker:
01:33:36
anybody else.

Speaker:
01:33:37
Not everybody's lucky.

Speaker:
01:33:38
Not everybody's lucky.

Speaker:
01:33:40
I've been working in skills development

Speaker:
01:33:43
and job development a long

Speaker:
01:33:45
time.

Speaker:
01:33:48
For, one would say, for the

Speaker:
01:33:50
disabled community or abilities-first.

Speaker:
01:33:55
And I've been working in

Speaker:
01:33:58
assisting with food security.

Speaker:
01:34:02
A lot of people that I work with are

Speaker:
01:34:04
housing insecure.

Speaker:
01:34:05
These are at the top of my

Speaker:
01:34:07
concerns.

Speaker:
01:34:08
Absolutely.

Speaker:
01:34:11
How do you see these

Speaker:
01:34:13
things?

Speaker:
01:34:14
Lack of employment.

Speaker:
01:34:16
And we've touched on it a little bit.

Speaker:
01:34:17
Lack of employment.

Speaker:
01:34:18
Lack of access to housing.

Speaker:
01:34:20
These are things that, through my work

Speaker:
01:34:22
in support employment, I encounter

Speaker:
01:34:24
these conversations almost on

Speaker:
01:34:26
a daily basis.

Speaker:
01:34:27
Yeah.

Speaker:
01:34:28
It's disproportionate.

Speaker:
01:34:29
Absolutely.

Speaker:
01:34:31
Absolutely.

Speaker:
01:34:31
How do you see-

Speaker:
01:34:32
I think it's all interconnected in a

Speaker:
01:34:34
lot of ways. I think that one of

Speaker:
01:34:36
the big gifts, I think, of having a

Speaker:
01:34:38
disability is you're born into a

Speaker:
01:34:40
very complicated life.

Speaker:
01:34:42
And as a result, I think I have come to

Speaker:
01:34:44
embrace and understand complication

Speaker:
01:34:46
as the basis of everything.

Speaker:
01:34:49
Everything is complicated all

Speaker:
01:34:51
the time. And that we need to be

Speaker:
01:34:53
aware of that. We need to be ready to

Speaker:
01:34:55
address complication.

Speaker:
01:34:57
We can't assume simplicity.

Speaker:
01:34:59
And so, I think that when we look at

Speaker:
01:35:01
the experiences of disability right

Speaker:
01:35:02
now, I think things like housing

Speaker:
01:35:05
and food security are intimately

Speaker:
01:35:07
connected to access to

Speaker:
01:35:09
employment, to access to education.

Speaker:
01:35:12
All of these things are important,

Speaker:
01:35:14
and we have to manage them in

Speaker:
01:35:16
different ways.

Speaker:
01:35:17
So, it's not enough to say,

Speaker:
01:35:19
okay, we're going to ensure that

Speaker:
01:35:20
education is accessible.

Speaker:
01:35:22
People get educated.

Speaker:
01:35:23
They'll get jobs. They'll get housing.

Speaker:
01:35:25
It'll be great.

Speaker:
01:35:26
Everything's fine.

Speaker:
01:35:28
Actually, no.

Speaker:
01:35:29
Because there aren't a whole lot of

Speaker:
01:35:30
accessible houses in London, Ontario.

Speaker:
01:35:34
And so, even if you have a job, you may

Speaker:
01:35:36
not even be able to afford still an

Speaker:
01:35:38
accessible house, and if you can, you

Speaker:
01:35:40
might not even be able to find one.

Speaker:
01:35:43
So, there's another issue here.

Speaker:
01:35:44
We need to do a better job of building

Speaker:
01:35:46
accessible housing.

Speaker:
01:35:48
When it comes to those who cannot

Speaker:
01:35:51
work, there are a lot of people with

Speaker:
01:35:53
disabilities who just can't.

Speaker:
01:35:55
Either work at a full-time pace, or

Speaker:
01:35:57
maybe they work part-time,

Speaker:
01:35:59
possibly occasional.

Speaker:
01:36:00
Depends on the disability.

Speaker:
01:36:01
We don't have very good structures to

Speaker:
01:36:04
allow for that kind of flexibility,

Speaker:
01:36:07
right? So, things like the Ontario

Speaker:
01:36:08
Disability Support Program, it's very

Speaker:
01:36:10
on-off.

Speaker:
01:36:11
You're on it or you're not.

Speaker:
01:36:13
And there isn't really any in-between

Speaker:
01:36:15
there. Not a lot.

Speaker:
01:36:18
I think that if we had better

Speaker:
01:36:19
flexibility in some of these programs

Speaker:
01:36:21
that allowed people to work when they

Speaker:
01:36:23
can, not work

Speaker:
01:36:25
when they can't, but still be

Speaker:
01:36:28
able to enjoy quality of life,

Speaker:
01:36:30
that I think is really important.

Speaker:
01:36:32
That's an important part of the safety

Speaker:
01:36:33
net that we should be building around

Speaker:
01:36:35
people.

Speaker:
01:36:36
But access to employment is another

Speaker:
01:36:38
issue, right?

Speaker:
01:36:39
I think that we need to do a better job

Speaker:
01:36:41
of supporting businesses to not

Speaker:
01:36:43
just get accessible, but also to

Speaker:
01:36:44
understand the benefits of hiring

Speaker:
01:36:46
disabled people.

Speaker:
01:36:48
Because there are enormous benefits to

Speaker:
01:36:50
hiring disabled people, right?

Speaker:
01:36:51
Disabled people are far more reliable,

Speaker:
01:36:53
generally speaking.

Speaker:
01:36:55
We work our jobs longer, we're more

Speaker:
01:36:56
loyal, often.

Speaker:
01:36:58
We don't retire or quit jobs at

Speaker:
01:37:00
the rate that other groups do.

Speaker:
01:37:01
We often take less sick days.

Speaker:
01:37:04
And not only that, but you're going to

Speaker:
01:37:05
get someone who's a jack of all trades,

Speaker:
01:37:06
right? Because to be disabled, to

Speaker:
01:37:09
survive, you've got to do a little bit

Speaker:
01:37:10
of everything, and you've got to be

Speaker:
01:37:12
able to do it all at the same time.

Speaker:
01:37:13
So, you're getting a multitasker,

Speaker:
01:37:15
you're getting a problem solver, and

Speaker:
01:37:17
you're getting someone who has a deep

Speaker:
01:37:19
understanding that sometimes

Speaker:
01:37:21
life is hard, and

Speaker:
01:37:23
you just need a bit of help to get

Speaker:
01:37:25
by. To me, that's a model

Speaker:
01:37:27
employee.

Speaker:
01:37:28
I would hire five of those any day.

Speaker:
01:37:31
Do you feel that

Speaker:
01:37:33
that's reflected in current government

Speaker:
01:37:35
policy, taking the AODA outside

Speaker:
01:37:37
of that food insecurity,

Speaker:
01:37:39
lack of flexible employment, lack of

Speaker:
01:37:41
accessible employment?

Speaker:
01:37:43
No, not at all.

Speaker:
01:37:44
We don't have that locked away.

Speaker:
01:37:45
Not in any way. I don't know that we've

Speaker:
01:37:47
even started to be totally honest.

Speaker:
01:37:49
I would say, you know, it goes

Speaker:
01:37:51
all the way down to education all the

Speaker:
01:37:53
way up, right? So, if we look at the

Speaker:
01:37:55
ways that we're trying to do education

Speaker:
01:37:57
right now for people with disabilities,

Speaker:
01:38:00
we're seeing a real push toward

Speaker:
01:38:01
mainstreaming, which on its face

Speaker:
01:38:03
is not a bad thing.

Speaker:
01:38:05
I'm supportive of disabled people being

Speaker:
01:38:07
in the mainstream classrooms.

Speaker:
01:38:09
However, a lot of our mainstreaming

Speaker:
01:38:10
efforts have been take the person out

Speaker:
01:38:12
of special ed, place them in a

Speaker:
01:38:14
mainstream classroom, don't provide any

Speaker:
01:38:16
supports, right?

Speaker:
01:38:17
Give them an iPad, put them in the back

Speaker:
01:38:19
of the room, it's integrated.

Speaker:
01:38:21
That's not integrated.

Speaker:
01:38:22
No.

Speaker:
01:38:23
That's not good education.

Speaker:
01:38:23
That's just a full classroom.

Speaker:
01:38:24
We're letting people down.

Speaker:
01:38:26
Right.

Speaker:
01:38:27
So, we're setting people up to fail at

Speaker:
01:38:29
the education right off the bat,

Speaker:
01:38:31
primary school, secondary school, if

Speaker:
01:38:33
they could even get into university.

Speaker:
01:38:35
They get into university, and what do

Speaker:
01:38:37
you find when you arrive at the

Speaker:
01:38:38
university gates? Well, you find

Speaker:
01:38:40
articles like the one in the Walrus or

Speaker:
01:38:42
a recent one in the Chronicle of Higher

Speaker:
01:38:44
Ed, which basically states that

Speaker:
01:38:46
people are lying about their

Speaker:
01:38:47
disabilities, that children today are

Speaker:
01:38:49
too fragile, that they're making up

Speaker:
01:38:51
ADHD, that they don't know how to

Speaker:
01:38:53
focus, they don't know how to control,

Speaker:
01:38:55
they're taking advantage of services,

Speaker:
01:38:57
they're just trying to get an easy way

Speaker:
01:38:58
through the system.

Speaker:
01:38:59
And so, you have a culture of doubt

Speaker:
01:39:01
that you're entering into as a disabled

Speaker:
01:39:03
student when you get into college or

Speaker:
01:39:05
university right off the bat.

Speaker:
01:39:07
Scary.

Speaker:
01:39:07
It's brutal.

Speaker:
01:39:09
It's brutal.

Speaker:
01:39:10
And so, I think when we look at this

Speaker:
01:39:12
problem, when you say, well, what can

Speaker:
01:39:14
we do about housing?

Speaker:
01:39:16
Well, unfortunately, it's not just a

Speaker:
01:39:18
question of what do we do about

Speaker:
01:39:18
housing. It's also a question of what

Speaker:
01:39:21
do we do about education?

Speaker:
01:39:22
What do we do about employment?

Speaker:
01:39:23
What do we do about safety nets?

Speaker:
01:39:25
What do we do about equipment funding?

Speaker:
01:39:28
What do we do about tenant care

Speaker:
01:39:29
funding? What do we do about medication

Speaker:
01:39:31
and the way that we fund that type of

Speaker:
01:39:33
stuff? And also, you know, why don't we

Speaker:
01:39:34
throw mental health on the pile too?

Speaker:
01:39:36
What do we do about counseling,

Speaker:
01:39:38
psychotherapy, CBT, DBT,

Speaker:
01:39:40
and the other types of tools that could

Speaker:
01:39:41
really be helpful for people to live

Speaker:
01:39:43
better quality lives.

Speaker:
01:39:45
All of these conversations are actually

Speaker:
01:39:47
connected.

Speaker:
01:39:48
They're interlinked and then can't be

Speaker:
01:39:50
done in silos.

Speaker:
01:39:51
In the same way that for me,

Speaker:
01:39:53
I entered into a hospital, it is

Speaker:
01:39:56
not just one conversation with my

Speaker:
01:39:57
pulmonary, one conversation with

Speaker:
01:39:59
my neuromuscular, one conversation

Speaker:
01:40:01
with my surgeon, one conversation

Speaker:
01:40:04
with, you know, my occupational

Speaker:
01:40:05
therapist.

Speaker:
01:40:06
We do healthcare in teams because

Speaker:
01:40:09
different people have different

Speaker:
01:40:10
expertise, but they need to be talking,

Speaker:
01:40:13
sharing information, and planning

Speaker:
01:40:15
together.

Speaker:
01:40:16
That's something that we really need to

Speaker:
01:40:18
do better when it comes to disabled

Speaker:
01:40:19
people.

Speaker:
01:40:21
Communities.

Speaker:
01:40:21
Absolutely.

Speaker:
01:40:22
Integrated solutions.

Speaker:
01:40:25
And in addition to advocating publicly

Speaker:
01:40:26
for the disabled community, you've

Speaker:
01:40:28
consulted with the government on both

Speaker:
01:40:29
accessibility and poverty mitigation

Speaker:
01:40:32
policy.

Speaker:
01:40:34
Is there a link between these two

Speaker:
01:40:35
topics, would you say?

Speaker:
01:40:37
Absolutely. Definitely.

Speaker:
01:40:38
Yeah, disabled people,

Speaker:
01:40:40
by and large, there are many, many,

Speaker:
01:40:42
many disabled people who are living

Speaker:
01:40:44
under what we would call the low-income

Speaker:
01:40:45
cutoff line.

Speaker:
01:40:47
People in our ODSP, if you're a single

Speaker:
01:40:49
individual living in London right now

Speaker:
01:40:50
on your own, you're only getting about

Speaker:
01:40:52
$1,200, $1,300 a

Speaker:
01:40:55
month, give or take.

Speaker:
01:40:56
When you take into consideration that

Speaker:
01:40:58
rent right now in London, I mean,

Speaker:
01:41:00
good luck, finding a place for under

Speaker:
01:41:02
700 bucks, that's not a

Speaker:
01:41:04
lot of money left over for, you know,

Speaker:
01:41:05
simple things like food, clothing,

Speaker:
01:41:07
heat, internet.

Speaker:
01:41:10
Just basic supplies.

Speaker:
01:41:11
Just basic things. If you don't have an

Speaker:
01:41:13
internet-connected device, how are you

Speaker:
01:41:14
going to apply for a job?

Speaker:
01:41:16
Right.

Speaker:
01:41:16
For instance most employers

Speaker:
01:41:19
now are using online employment

Speaker:
01:41:21
platforms.

Speaker:
01:41:23
Services, yeah.

Speaker:
01:41:23
So, yeah, so it all

Speaker:
01:41:25
becomes very interconnected.

Speaker:
01:41:28
So, one of those answers, I think, is

Speaker:
01:41:30
about increasing access to employment.

Speaker:
01:41:32
It's about supporting disabled people

Speaker:
01:41:34
to get the skills and training that

Speaker:
01:41:36
they need to get jobs.

Speaker:
01:41:38
It's also about working with employers

Speaker:
01:41:39
to break down stigma around

Speaker:
01:41:42
disability that leads to them

Speaker:
01:41:44
passing over disabled applicants.

Speaker:
01:41:46
It's also about supporting them to

Speaker:
01:41:48
become accessible within their

Speaker:
01:41:50
spaces, to help them to ensure that

Speaker:
01:41:52
if you hire someone, you actually

Speaker:
01:41:54
have the facilities, the

Speaker:
01:41:56
technology, the adaptations

Speaker:
01:41:58
that you need for them to be able to

Speaker:
01:42:00
function within your workspace.

Speaker:
01:42:04
So, I think that all of these things

Speaker:
01:42:05
are part of the conversation.

Speaker:
01:42:07
But there also is, you know,

Speaker:
01:42:09
the premier famously has said, you

Speaker:
01:42:11
know, when you need to get these people

Speaker:
01:42:12
with ODSP jobs, if you want

Speaker:
01:42:14
a job, we're going to get you a job.

Speaker:
01:42:16
That's good.

Speaker:
01:42:18
But there are a lot of people that work

Speaker:
01:42:21
is simply not possible, not in the way

Speaker:
01:42:23
that we understand it in the current

Speaker:
01:42:24
sort of neoliberal capitalism that we

Speaker:
01:42:26
live in.

Speaker:
01:42:27
There are folks who just can't

Speaker:
01:42:29
because of disability.

Speaker:
01:42:31
My question then is, so what then?

Speaker:
01:42:33
Because at the moment, our answer is we

Speaker:
01:42:35
will provide you enough to subsist, but

Speaker:
01:42:37
we will not give you enough to actually

Speaker:
01:42:39
survive.

Speaker:
01:42:40
We won't give you enough to live a

Speaker:
01:42:42
quality life.

Speaker:
01:42:43
And I believe that most

Speaker:
01:42:45
of us agree in our society that

Speaker:
01:42:48
here in Ontario, that shouldn't

Speaker:
01:42:50
be the case, that we should take

Speaker:
01:42:52
care of people.

Speaker:
01:42:53
That was what I was raised to believe

Speaker:
01:42:55
as an Ontarian.

Speaker:
01:42:57
I was raised to believe that those

Speaker:
01:42:59
who can, give for those

Speaker:
01:43:01
who can't.

Speaker:
01:43:02
And that we take care of those people,

Speaker:
01:43:04
that they should live a good life.

Speaker:
01:43:06
Just because they're disabled shouldn't

Speaker:
01:43:08
be a mandated

Speaker:
01:43:11
poverty. It shouldn't be a mandate

Speaker:
01:43:13
that they live an isolated life.

Speaker:
01:43:15
I think there's a better way, but it

Speaker:
01:43:17
means we all need to work together.

Speaker:
01:43:19
It's good economics.

Speaker:
01:43:21
Yeah. Yeah, in a lot of ways.

Speaker:
01:43:22
I would argue the current system is

Speaker:
01:43:24
wildly inefficient financially.

Speaker:
01:43:28
It doesn't make good business sense.

Speaker:
01:43:30
It doesn't. Not really.

Speaker:
01:43:31
I mean, we spend a lot of money on a

Speaker:
01:43:33
lot of things. I wonder

Speaker:
01:43:36
how we're focusing our

Speaker:
01:43:38
funding, how we're focusing where we

Speaker:
01:43:40
put money.

Speaker:
01:43:42
This is always a big question.

Speaker:
01:43:43
I mean, a mentor of mine once famously

Speaker:
01:43:45
said, if you want to understand what

Speaker:
01:43:47
a society truly shares

Speaker:
01:43:49
about, what they truly want

Speaker:
01:43:51
and believe in, look where

Speaker:
01:43:54
they put their money.

Speaker:
01:43:55
Look where they spend their money.

Speaker:
01:43:57
And I think that if we look at the

Speaker:
01:43:58
Ontario government over the last 30

Speaker:
01:44:00
years, 40 years, give or take, I

Speaker:
01:44:03
do not believe that the finances

Speaker:
01:44:05
continue to reflect

Speaker:
01:44:08
what we believe as

Speaker:
01:44:10
a society.

Speaker:
01:44:11
I don't believe that.

Speaker:
01:44:13
I think that we have shifted these

Speaker:
01:44:15
funding models to a point

Speaker:
01:44:17
where our schools are underfunded,

Speaker:
01:44:20
our hospitals are underfunded.

Speaker:
01:44:22
I don't actually really seem to know

Speaker:
01:44:24
where we're spending all of our money

Speaker:
01:44:25
because it seems like

Speaker:
01:44:27
the people in the most need are not the

Speaker:
01:44:29
ones that are receiving it.

Speaker:
01:44:33
And on this topic, why do you think

Speaker:
01:44:35
some of these programs tend to be

Speaker:
01:44:36
underfunded when they represent our

Speaker:
01:44:38
society's most vulnerable individuals?

Speaker:
01:44:41
Yeah, I mean, that's a really tough

Speaker:
01:44:42
question.

Speaker:
01:44:44
It's a really tough question.

Speaker:
01:44:45
I would say in my experience, it

Speaker:
01:44:47
becomes really easy to

Speaker:
01:44:49
get trapped in the spreadsheets.

Speaker:
01:44:51
I think that government officials often

Speaker:
01:44:53
end up trapped in these spreadsheets

Speaker:
01:44:55
where they're looking at numbers and

Speaker:
01:44:57
they're trying to balance the books,

Speaker:
01:44:58
right? And so to them, they say,

Speaker:
01:45:00
well, geez, if we were to increase ODSP

Speaker:
01:45:03
by $100 a month for every

Speaker:
01:45:05
person at ODSP, that would be

Speaker:
01:45:07
billions of dollars, right?

Speaker:
01:45:09
And that would kill our finances.

Speaker:
01:45:12
How would we survive that?

Speaker:
01:45:14
I think that unfortunately

Speaker:
01:45:16
there's another number here

Speaker:
01:45:19
that plays, which is

Speaker:
01:45:21
I don't believe that politicians see

Speaker:
01:45:23
disabled people as a voting block.

Speaker:
01:45:25
I don't think they see us as active

Speaker:
01:45:27
political participants.

Speaker:
01:45:29
And as a result, we are not a part of

Speaker:
01:45:31
the political agenda.

Speaker:
01:45:32
I can almost guarantee you

Speaker:
01:45:34
there will not be a political party in

Speaker:
01:45:37
the next provincial election that has

Speaker:
01:45:39
a disability-related,

Speaker:
01:45:41
accessibility-related platform

Speaker:
01:45:43
front and center in their campaign.

Speaker:
01:45:46
You might have health care in there.

Speaker:
01:45:48
You'll probably get education in there.

Speaker:
01:45:50
But I don't think you'll get a

Speaker:
01:45:52
disability-specific platform.

Speaker:
01:45:53
And so I think the other question,

Speaker:
01:45:55
why is it underfunded?

Speaker:
01:45:56
I think it's underfunded in part

Speaker:
01:45:58
because it's not perceived as a place

Speaker:
01:46:00
where votes come from.

Speaker:
01:46:01
Can I ask you a farming question?

Speaker:
01:46:03
Yeah.

Speaker:
01:46:06
Part of the work that

Speaker:
01:46:08
I've been involved in with is urban

Speaker:
01:46:10
agriculture.

Speaker:
01:46:12
Accessible urban agriculture.

Speaker:
01:46:15
For me,

Speaker:
01:46:17
farming is independence.

Speaker:
01:46:20
It's not readily accessible.

Speaker:
01:46:23
No.

Speaker:
01:46:24
No, it's not.

Speaker:
01:46:25
But there are pillars of independence

Speaker:
01:46:28
and accessibility.

Speaker:
01:46:31
I don't know if it's something that

Speaker:
01:46:33
you've studied or

Speaker:
01:46:35
you have thoughts on.

Speaker:
01:46:36
Yeah.

Speaker:
01:46:37
But I would love to hear them.

Speaker:
01:46:38
I will say- so I like to play

Speaker:
01:46:40
this game where I

Speaker:
01:46:42
imagine what if I was born without a

Speaker:
01:46:44
disability.

Speaker:
01:46:45
And I try to follow it through and see

Speaker:
01:46:46
sort of where my life would end up.

Speaker:
01:46:49
And so I grew up in a small town, a

Speaker:
01:46:50
rural town, a lot of farmers in the

Speaker:
01:46:52
area. And one of those pathways that

Speaker:
01:46:54
I imagine if I wasn't disabled,

Speaker:
01:46:56
I actually think I may have been a

Speaker:
01:46:57
farmer.

Speaker:
01:46:59
Because there's a lot of stuff about

Speaker:
01:47:00
the farm life that I do find very

Speaker:
01:47:02
appealing.

Speaker:
01:47:03
Right? Like the working with your

Speaker:
01:47:05
hands, being out in the field,

Speaker:
01:47:07
being outside.

Speaker:
01:47:08
The hard work with the really obvious

Speaker:
01:47:11
return on that

Speaker:
01:47:13
sweat equity. Right?

Speaker:
01:47:14
You know, you go out, you do your work

Speaker:
01:47:16
in the field, and boom, you've got some

Speaker:
01:47:17
great food that's coming back the other

Speaker:
01:47:19
direction.

Speaker:
01:47:21
A lot of those things I think are

Speaker:
01:47:22
really good for my mind and the

Speaker:
01:47:24
way that I kind of function.

Speaker:
01:47:26
But farming was never an option for me

Speaker:
01:47:28
as I was growing up.

Speaker:
01:47:29
I looked at this and I said, this is a

Speaker:
01:47:30
highly physical job.

Speaker:
01:47:34
This is not something I'll be able to

Speaker:
01:47:35
do.

Speaker:
01:47:36
And so I've never really been involved

Speaker:
01:47:38
really in farm

Speaker:
01:47:40
work beyond, you know, I have some

Speaker:
01:47:42
friends who have farms, been to farms.

Speaker:
01:47:44
But I've never really been involved in

Speaker:
01:47:45
farm work or even really necessarily

Speaker:
01:47:46
growing things.

Speaker:
01:47:48
Two summers ago, we did receive,

Speaker:
01:47:50
we bought some raised planters.

Speaker:
01:47:53
Not with the idea that maybe I could

Speaker:
01:47:54
get my hands in there.

Speaker:
01:47:57
I also learned that I don't like my

Speaker:
01:47:58
hands being dirty.

Speaker:
01:47:59
So I would have been a bad farmer.

Speaker:
01:48:01
[Laughter]

Speaker:
01:48:02
I think. Probably good that I didn't go

Speaker:
01:48:04
that way. So there's a bit of a

Speaker:
01:48:06
contradiction there.

Speaker:
01:48:07
But I think that farming is such an

Speaker:
01:48:09
interesting one where it's a very

Speaker:
01:48:11
different way of thinking about

Speaker:
01:48:12
accessibility and inclusion, right?

Speaker:
01:48:14
So what does accessibility mean?

Speaker:
01:48:16
Well, part of it is about, you know,

Speaker:
01:48:18
I've raised planters, right?

Speaker:
01:48:19
But that's the things that are able to

Speaker:
01:48:21
go up and give people the ability to

Speaker:
01:48:22
actually work with their hands in

Speaker:
01:48:24
those spaces. But it also is about tool

Speaker:
01:48:26
use, right?

Speaker:
01:48:28
And so you look at, you know,

Speaker:
01:48:30
urban agriculture, for instance, and

Speaker:
01:48:31
all the varieties of tools and things

Speaker:
01:48:33
that we've developed to be able to do a

Speaker:
01:48:34
little farming in our backyards, to

Speaker:
01:48:36
grow plants, edible or otherwise,

Speaker:
01:48:39
whether it be, you know, small shovels.

Speaker:
01:48:42
And there's a different tool for every

Speaker:
01:48:43
different need when it comes to

Speaker:
01:48:45
gardening. And so to me, I feel

Speaker:
01:48:47
like that's a population who actually

Speaker:
01:48:49
understands what disability is like

Speaker:
01:48:51
in some ways, because it's people who

Speaker:
01:48:53
see a physical problem and

Speaker:
01:48:55
they invent a tool to try to resolve

Speaker:
01:48:56
that issue, right?

Speaker:
01:48:58
So it makes it easier for you to do the

Speaker:
01:48:59
things you need to do in order to grow

Speaker:
01:49:01
the plants.

Speaker:
01:49:02
I would love to get some of those

Speaker:
01:49:04
people on this question, right,

Speaker:
01:49:06
and say, all right, so if you weren't

Speaker:
01:49:08
able to use your hands, how

Speaker:
01:49:10
would you maybe develop a tool that

Speaker:
01:49:12
would allow you to pull

Speaker:
01:49:14
weeds or, you know,

Speaker:
01:49:16
make your little lines

Speaker:
01:49:19
to put your seed in and that sort of

Speaker:
01:49:20
thing.

Speaker:
01:49:22
I would love to get those minds on this

Speaker:
01:49:24
question, because I bet you they would

Speaker:
01:49:25
develop some fascinating things

Speaker:
01:49:27
to make it easier, right?

Speaker:
01:49:29
Right.

Speaker:
01:49:29
They're innovators.

Speaker:
01:49:31
Farmers are thoughtful.

Speaker:
01:49:32
Absolutely.

Speaker:
01:49:33
Problem solvers. Just like disabled

Speaker:
01:49:35
people, right?

Speaker:
01:49:36
Yep.

Speaker:
01:49:36
Oh, I love that a lot.

Speaker:
01:49:38
What do you think about indoor farming?

Speaker:
01:49:40
Have you had any experience in that?

Speaker:
01:49:41
I'm curious.

Speaker:
01:49:42
I have killed every plant I've

Speaker:
01:49:44
ever owned.

Speaker:
01:49:46
In fact, these plants will likely

Speaker:
01:49:48
die within several hours

Speaker:
01:49:50
of me leaving today.

Speaker:
01:49:52
So I'm sorry.

Speaker:
01:49:53
It's just your energy?.

Speaker:
01:49:53
It's just a vibe that I

Speaker:
01:49:56
bring with me, I guess.

Speaker:
01:49:58
So I've been very unsuccessful.

Speaker:
01:50:01
Having said that, I

Speaker:
01:50:04
think that there's something actually

Speaker:
01:50:05
really beautiful about the

Speaker:
01:50:07
people that are able to grow and

Speaker:
01:50:08
cultivate plants within our home.

Speaker:
01:50:10
I think there's a bit of a Zen kind of

Speaker:
01:50:12
vibe to it in some ways, right?

Speaker:
01:50:14
There's a routine to it.

Speaker:
01:50:15
You see a product of

Speaker:
01:50:17
your labor, which is something we don't

Speaker:
01:50:19
get often in this world anymore, right?

Speaker:
01:50:22
When you're like, oh, I did 18

Speaker:
01:50:24
spreadsheets today.

Speaker:
01:50:25
I have no idea what that means.

Speaker:
01:50:29
There's a tangibleness to it,

Speaker:
01:50:32
which I think could be really healthy.

Speaker:
01:50:34
It could really help us, grounds us in

Speaker:
01:50:36
some ways. And so I

Speaker:
01:50:38
think it would be phenomenal if

Speaker:
01:50:40
we were able to help people to get

Speaker:
01:50:41
better, but they got for running.

Speaker:
01:50:43
And again, if you're living

Speaker:
01:50:45
on ODSP, having the ability to

Speaker:
01:50:47
actually supplement some

Speaker:
01:50:49
of your own food,

Speaker:
01:50:52
that's not a bad thing.

Speaker:
01:50:54
Very helpful, in fact.

Speaker:
01:50:56
Incredible skill set to be learning

Speaker:
01:50:58
to grow indoors.

Speaker:
01:50:59
Like it's kind of incredible.

Speaker:
01:51:01
You can also, it's cool having other

Speaker:
01:51:02
plants indoors that are not edible too.

Speaker:
01:51:05
Cause it's like, wow, interesting.

Speaker:
01:51:07
It's color, right?

Speaker:
01:51:08
Yes.

Speaker:
01:51:08
I mean, when I was growing up, I

Speaker:
01:51:10
grew up in a small town, and whenever

Speaker:
01:51:13
I was stressed, we had a giant forest

Speaker:
01:51:14
beside our house.

Speaker:
01:51:16
And I spent most

Speaker:
01:51:18
of my childhood in that forest.

Speaker:
01:51:20
I mean, we were there all weekend.

Speaker:
01:51:22
We were there all summer, building

Speaker:
01:51:24
forts, fishing in the pond,

Speaker:
01:51:27
playing hide and seek, playing tag,

Speaker:
01:51:29
ripping around, exploring,

Speaker:
01:51:32
right?

Speaker:
01:51:33
And so, the forest really is

Speaker:
01:51:35
a happy place for me, which

Speaker:
01:51:37
is part of the reason why I love

Speaker:
01:51:38
London, to be honest, because we're in

Speaker:
01:51:40
a city.

Speaker:
01:51:41
But you know, where I live, I'm steps

Speaker:
01:51:43
away from the

Speaker:
01:51:45
Thames River or Deshkan Ziibi,

Speaker:
01:51:47
and it's a beautiful place to

Speaker:
01:51:49
roll down, walk along the side

Speaker:
01:51:51
of the river, and just have

Speaker:
01:51:53
calm for a moment, right?

Speaker:
01:51:55
I think that being surrounded by nature

Speaker:
01:51:57
really is an amazing,

Speaker:
01:51:59
calming influence in our

Speaker:
01:52:02
life.

Speaker:
01:52:03
It's hard to be upset when you're in

Speaker:
01:52:05
nature.

Speaker:
01:52:06
Hat is true.

Speaker:
01:52:07
That is true. So much therapy.

Speaker:
01:52:09
Yeah.

Speaker:
01:52:09
Natural.

Speaker:
01:52:10
It's just good for us.

Speaker:
01:52:11
It's just good for us, right?

Speaker:
01:52:13
It's so good, yeah.

Speaker:
01:52:14
I have a couple other questions too.

Speaker:
01:52:16
So, what policies or actions would

Speaker:
01:52:18
you like to see to help the

Speaker:
01:52:22
housing security to

Speaker:
01:52:24
all of us who live in Canada?

Speaker:
01:52:26
Yeah, sure.

Speaker:
01:52:27
Well, that's a good question.

Speaker:
01:52:29
So, number one, I'm

Speaker:
01:52:31
a huge supporter of the Age

Speaker:
01:52:33
In Place Movement.

Speaker:
01:52:35
And so, this is a philosophy that as

Speaker:
01:52:38
we're building houses, we should

Speaker:
01:52:40
be building houses that are, if not

Speaker:
01:52:42
already, accessible.

Speaker:
01:52:43
They've been designed in such a way

Speaker:
01:52:45
that it's very easy to modify them

Speaker:
01:52:47
to become accessible so

Speaker:
01:52:49
that people don't have to leave their

Speaker:
01:52:51
houses because they've become old

Speaker:
01:52:53
and are no longer able to live there,

Speaker:
01:52:55
right? A lot of people end up having to

Speaker:
01:52:57
leave their homes when they get older

Speaker:
01:52:58
because it's no longer accessible to

Speaker:
01:53:01
their needs.

Speaker:
01:53:01
So, what if we actually started

Speaker:
01:53:03
designing houses that people didn't

Speaker:
01:53:04
have to leave because they were able to

Speaker:
01:53:06
modify them easily or they were

Speaker:
01:53:08
already made that way?

Speaker:
01:53:10
So, what if we just started standard,

Speaker:
01:53:12
make it wider doorways?

Speaker:
01:53:13
What if we ensured that every home had

Speaker:
01:53:16
one grade entry into

Speaker:
01:53:18
it? Just one.

Speaker:
01:53:19
Just one that people could get into.

Speaker:
01:53:22
So, I would love to see updates on the

Speaker:
01:53:24
building code to require that

Speaker:
01:53:26
at least the main floor of the

Speaker:
01:53:28
buildings that we're building, of

Speaker:
01:53:29
houses that we're building, are

Speaker:
01:53:31
accessible. So, we're starting to add

Speaker:
01:53:33
to the amount

Speaker:
01:53:36
of houses that are either already

Speaker:
01:53:38
accessible or easily convertible,

Speaker:
01:53:40
right?

Speaker:
01:53:41
I think that would be a huge step

Speaker:
01:53:42
forward.

Speaker:
01:53:43
I would love to see the city, they're

Speaker:
01:53:44
doing this a little bit now, I'd love

Speaker:
01:53:46
to see more of it where they're working

Speaker:
01:53:48
with developers to increase the

Speaker:
01:53:50
number of accessible units within

Speaker:
01:53:52
builds.

Speaker:
01:53:54
So, when they're building condos, when

Speaker:
01:53:56
they're building apartments, let's get

Speaker:
01:53:58
more accessible units in there.

Speaker:
01:53:59
And if that means we need to wheel and

Speaker:
01:54:01
deal with the developer a little bit,

Speaker:
01:54:03
so, you know, you're going to add a few

Speaker:
01:54:04
more actually accessible units, we'll

Speaker:
01:54:06
let you go up an extra floor for

Speaker:
01:54:08
your zone and area.

Speaker:
01:54:10
I think that there's an opportunity

Speaker:
01:54:11
there to actually work with the

Speaker:
01:54:12
developers to make it worth their while

Speaker:
01:54:14
to build more accessible units

Speaker:
01:54:16
into these buildings as they're

Speaker:
01:54:18
starting to come online.

Speaker:
01:54:19
I would also love to see some funding

Speaker:
01:54:21
for retrofit to

Speaker:
01:54:23
allow people to renovate their homes so

Speaker:
01:54:25
that they themselves are either able to

Speaker:
01:54:27
stay in place or once they

Speaker:
01:54:29
leave, they're going to leave behind

Speaker:
01:54:30
them an accessible spot, right?

Speaker:
01:54:32
And so, you know, every place that I've

Speaker:
01:54:34
lived in London, I've left behind

Speaker:
01:54:36
me an accessible unit,

Speaker:
01:54:38
right? Because I've had to go in, I've

Speaker:
01:54:40
had to modify, and I've left those

Speaker:
01:54:42
modifications as I

Speaker:
01:54:44
move on to the next.

Speaker:
01:54:46
But unfortunately, disabled people

Speaker:
01:54:48
are not crabs, and we can't just keep

Speaker:
01:54:50
trade in our shells for that shell

Speaker:
01:54:52
up, right?

Speaker:
01:54:53
We need to actually start building real

Speaker:
01:54:55
sustainable volume of

Speaker:
01:54:58
accessible homes.

Speaker:
01:54:59
And we can only really do that through

Speaker:
01:55:00
funding and through building code.

Speaker:
01:55:03
A kind of a thought and a question

Speaker:
01:55:05
mixed together, as

Speaker:
01:55:07
most of my family are in construction.

Speaker:
01:55:12
Accessible design is beautiful,

Speaker:
01:55:15
but the word,

Speaker:
01:55:18
the term accessible unit is

Speaker:
01:55:21
less in vogue than an

Speaker:
01:55:23
inaccessible unit.

Speaker:
01:55:25
Right.

Speaker:
01:55:25
You know,

Speaker:
01:55:28
for somebody, for a

Speaker:
01:55:30
developer or builder, to

Speaker:
01:55:34
shake the tree and to give them

Speaker:
01:55:36
a new thought ideology,

Speaker:
01:55:39
how, in your

Speaker:
01:55:43
opinion, is accessible

Speaker:
01:55:45
design beautiful?

Speaker:
01:55:47
Oh, man.

Speaker:
01:55:49
So to me, I think we often

Speaker:
01:55:51
think of accessibility as checklists,

Speaker:
01:55:53
right? And so we think of

Speaker:
01:55:55
accessibility as a list of things.

Speaker:
01:55:56
You've got to have a ramp.

Speaker:
01:55:58
You've got to have a door that's wide.

Speaker:
01:55:59
You've got to have this much turn

Speaker:
01:56:00
space, like yada, yada, yada.

Speaker:
01:56:02
And I'm not saying it's not.

Speaker:
01:56:04
But I actually think that we need to

Speaker:
01:56:05
update our philosophy of accessibility.

Speaker:
01:56:08
That I think instead of thinking of

Speaker:
01:56:09
accessible as a set of

Speaker:
01:56:11
rigid standards, a one-size-fits-all,

Speaker:
01:56:13
that rather we need to be thinking

Speaker:
01:56:15
about module and flexible design

Speaker:
01:56:17
instead.

Speaker:
01:56:18
And I think that's actually something

Speaker:
01:56:20
that designers can wrap

Speaker:
01:56:22
their heads around, right?

Speaker:
01:56:23
To say instead of building a space

Speaker:
01:56:25
that's for one kind of person, what

Speaker:
01:56:28
if we build a space that's for lots

Speaker:
01:56:30
of different kinds of people?

Speaker:
01:56:32
How can we imagine different levels of

Speaker:
01:56:34
function entering in and moving through

Speaker:
01:56:36
a space?

Speaker:
01:56:37
Because for a designer, that's actually

Speaker:
01:56:39
their work, right?

Speaker:
01:56:41
That's what they're actually trained to

Speaker:
01:56:42
do. What we haven't taught them

Speaker:
01:56:44
to do, or rather what we haven't

Speaker:
01:56:46
required them to do, is

Speaker:
01:56:48
to change where the line is

Speaker:
01:56:50
for a general use case,

Speaker:
01:56:53
right? And so designers right now, when

Speaker:
01:56:55
they think of a general use case,

Speaker:
01:56:56
they're thinking of, quote, an average

Speaker:
01:56:58
person, the 70 percent-ish of

Speaker:
01:57:00
us that don't have a disability.

Speaker:
01:57:04
I think that we actually need to flip

Speaker:
01:57:05
it around and say that actual good

Speaker:
01:57:07
design is design that is

Speaker:
01:57:09
designed for those who are the

Speaker:
01:57:11
most limited, because it will

Speaker:
01:57:13
then ensure accessibility for

Speaker:
01:57:15
those who are not.

Speaker:
01:57:16
So rather than trying to design spaces

Speaker:
01:57:19
that fit most people,

Speaker:
01:57:21
let's design spaces that

Speaker:
01:57:23
fit those with the most need,

Speaker:
01:57:25
because everyone benefits.

Speaker:
01:57:28
This is what we call a disability case,

Speaker:
01:57:30
right? Which is when you do things

Speaker:
01:57:32
for disabled people, it often actually

Speaker:
01:57:34
leads to better experiences for the

Speaker:
01:57:36
non-disabled.

Speaker:
01:57:36
That's the paradigm shift we need to

Speaker:
01:57:38
happen in the world of design,

Speaker:
01:57:40
the world of construction, the world of

Speaker:
01:57:42
development.

Speaker:
01:57:43
Can I ask you a math question?

Speaker:
01:57:44
Maybe.

Speaker:
01:57:45
I'm terrible at math.

Speaker:
01:57:47
I'm awful at math.

Speaker:
01:57:49
Can 100 percent of people use

Speaker:
01:57:50
accessible design?

Speaker:
01:57:53
No.

Speaker:
01:57:54
Okay.

Speaker:
01:57:54
That's an easy math question, I

Speaker:
01:57:56
would say.

Speaker:
01:57:57
Because I also think that 100%,

Speaker:
01:58:00
I don't want to get too philosophical,

Speaker:
01:58:01
but I mean, it's snowy out, so

Speaker:
01:58:04
let's talk philosophy.

Speaker:
01:58:05
Yeah, we can do that.

Speaker:
01:58:06
We've talked math, we've talked

Speaker:
01:58:07
farming, now we're on to philosophy.

Speaker:
01:58:08
Yeah, on to philosophy.

Speaker:
01:58:09
So, you know,

Speaker:
01:58:13
when we think about accessibility and

Speaker:
01:58:15
get it to become 100% accessible,

Speaker:
01:58:18
philosophical debate or, you know,

Speaker:
01:58:20
thought experiment is

Speaker:
01:58:22
100% accessible,

Speaker:
01:58:24
conceptually ableist in its nature,

Speaker:
01:58:27
because it presumes a perfection,

Speaker:
01:58:29
right? It presumes this

Speaker:
01:58:31
top of the mountain that we should

Speaker:
01:58:33
reach, that we should strive for, that

Speaker:
01:58:35
perhaps instead of thinking about 100%

Speaker:
01:58:38
accessible, instead perhaps

Speaker:
01:58:40
we should be asking not what

Speaker:
01:58:42
already exists, but rather

Speaker:
01:58:44
how is the space able

Speaker:
01:58:47
to change as different needs

Speaker:
01:58:49
come in and go out?

Speaker:
01:58:51
Because ultimately, paradoxically,

Speaker:
01:58:53
these are accessibility paradoxes,

Speaker:
01:58:55
which I love, which is when

Speaker:
01:58:57
you make a space accessible for some,

Speaker:
01:59:00
you inadvertently may have just made

Speaker:
01:59:02
it inaccessible for someone else.

Speaker:
01:59:04
Right.

Speaker:
01:59:05
It's a paradox, right?

Speaker:
01:59:06
It's a paradox.

Speaker:
01:59:06
So curb cuts are a great example

Speaker:
01:59:08
of this.

Speaker:
01:59:09
So we need curb cuts for wheelchairs to

Speaker:
01:59:11
get off sidewalks, right?

Speaker:
01:59:13
Guess who needs curbs?

Speaker:
01:59:15
People with low vision who are using

Speaker:
01:59:17
the curb with their stick to know where

Speaker:
01:59:19
the sidewalk ends and the road begins.

Speaker:
01:59:22
So by making it accessible for

Speaker:
01:59:23
wheelchairs, you've actually now

Speaker:
01:59:24
reduced accessibility for some people

Speaker:
01:59:27
with vision loss.

Speaker:
01:59:29
Interesting.

Speaker:
01:59:29
So now what do you do?

Speaker:
01:59:30
Well, the engineers get at it, right?

Speaker:
01:59:32
Let me try and find a new solution.

Speaker:
01:59:33
So when you ask about this question

Speaker:
01:59:35
of 100 percent accessibility, I

Speaker:
01:59:37
would argue maybe that's

Speaker:
01:59:39
actually fallen into this old trap

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01:59:42
of supremacy, which I

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01:59:44
think disability tries to push against,

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01:59:46
which is it's not about being perfect.

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01:59:48
It is about leaning on the skills

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01:59:51
that we have. It's about listening

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01:59:53
and it is about working together

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01:59:55
to try to find solutions.

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01:59:57
To me that's the truth of disability,

Speaker:
01:59:59
and it's a story that gets lost in things like able-bodied supremacy, 

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02:00:04
abelism, as we would call it, that getfs lost in

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02:00:07
a lot of other supremacies which seek to optimize, to perfect the human body.

Speaker:
02:00:14
I don't want a perfected body; my body is better because it's not perfect. 

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02:00:20
Thank you. We've covered a lot of things today. 

Speaker:
02:00:23
 Yeah! I've been all over the place! 

Speaker:
02:00:24
Is there anything we missed? 

Speaker:
02:00:25
Oh, man, well we haven't talked about sports, and so that's

Speaker:
02:00:29
that's always a thing. So we haven't talked about sports, I don't think.

Speaker:
02:00:33
and we haven't talked really about relationships. 

Speaker:
02:00:34
That's-- OK.

Speaker:
02:00:36
 And so maybe that would be a great place for us to end off. 

Speaker:
02:00:38
Those are two- Those are two that we forgot. 

Speaker:
02:00:39
...Is to think about relationships.

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02:00:41
relationships,

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02:00:42
Yeah, so I've been thinking a lot about relationships,

Speaker:
02:00:45
but I think that they're important.

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02:00:48
And I feel like in this current

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02:00:50
cultural, socioeconomic, political

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02:00:52
moment that we're in right now,

Speaker:
02:00:54
2025, I

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02:00:56
think that relationships actually

Speaker:
02:00:57
matter more than they have in a

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02:00:59
very, very long time.

Speaker:
02:01:00
Because I think in the last five years,

Speaker:
02:01:02
we have seen an erosion of

Speaker:
02:01:04
our relationships, our relationships

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02:01:06
with each other, our relationships

Speaker:
02:01:08
with the other, our relationships

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02:01:10
with neighbors, our relationships with

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02:01:12
the community.

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02:01:13
Our city relationships, our provincial

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02:01:15
relationships, even necessarily,

Speaker:
02:01:17
I think our relationships with

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02:01:18
ourselves, understanding

Speaker:
02:01:21
who we are, where we fit, what we

Speaker:
02:01:23
want to be.

Speaker:
02:01:24
And I worry that disabled people

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02:01:26
are sitting on the outside of

Speaker:
02:01:28
many of these relationships,

Speaker:
02:01:30
that it is a struggle at times to

Speaker:
02:01:33
form and maintain relationships when

Speaker:
02:01:35
you have a disability for lots of

Speaker:
02:01:36
reasons. I mean, it's hard to maintain

Speaker:
02:01:38
relationships when you don't have

Speaker:
02:01:39
transit to go out and see your friends,

Speaker:
02:01:42
for instance.

Speaker:
02:01:43
Hard to maintain relationships when as

Speaker:
02:01:45
soon as it snows, the sidewalks are no

Speaker:
02:01:47
longer accessible for you, for months,

Speaker:
02:01:49
potentially.

Speaker:
02:01:51
But there's also this other issue,

Speaker:
02:01:53
which is that ableism says that

Speaker:
02:01:55
there are two kinds of people in the

Speaker:
02:01:57
world. There are the disabled and there

Speaker:
02:01:59
are the non-disabled.

Speaker:
02:02:00
And often these two groups are not seen

Speaker:
02:02:02
as being ones that should mix or

Speaker:
02:02:04
intercede or intervene, right?

Speaker:
02:02:07
We presume disabled people are happiest

Speaker:
02:02:09
to best off with each other and that

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02:02:11
the non-disabled are happiest to best

Speaker:
02:02:12
off on their own.

Speaker:
02:02:14
And so what I actually think we really

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02:02:16
need to be talking about is

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02:02:17
inter-ability relationships

Speaker:
02:02:19
and about how we actually bring these

Speaker:
02:02:21
groups together and start to break down

Speaker:
02:02:24
that division between the non-disabled

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02:02:25
and the disabled.

Speaker:
02:02:26
How we don't have just disabled

Speaker:
02:02:28
spaces and non-disabled spaces,

Speaker:
02:02:31
disabled sports, non-disabled sports,

Speaker:
02:02:33
right? How are we able to actually

Speaker:
02:02:35
start to evade people in and break down

Speaker:
02:02:37
some of those distinctions?

Speaker:
02:02:38
And how do we start to open up the

Speaker:
02:02:40
imagination of what relationships might

Speaker:
02:02:41
be, right?

Speaker:
02:02:42
So not just about befriending

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02:02:44
people with disabilities, but talk

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02:02:46
about dating people with disabilities.

Speaker:
02:02:49
Talk about weddings and marriage and

Speaker:
02:02:50
relationships and kids with

Speaker:
02:02:52
disabilities, right?

Speaker:
02:02:54
Talk about all of the ways that we

Speaker:
02:02:56
interact with each other as people

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02:02:58
and asking ourselves,

Speaker:
02:03:01
how many friends in your friend group

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02:03:02
have a disability?

Speaker:
02:03:04
Is it a problem if there are

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02:03:06
none?

Speaker:
02:03:08
What does that mean?

Speaker:
02:03:09
And what does it mean if you yourself

Speaker:
02:03:10
are afraid to have a friend with

Speaker:
02:03:12
a disability?

Speaker:
02:03:13
What if you've never met someone with a

Speaker:
02:03:15
disability?

Speaker:
02:03:16
You know, I'll share with you when I

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02:03:18
was an undergrad, I hired a person to

Speaker:
02:03:20
work as a PSW for me.

Speaker:
02:03:22
First-year student, she was 19 years

Speaker:
02:03:24
old, and she disclosed after I hired

Speaker:
02:03:26
her, I was the first person in a

Speaker:
02:03:28
wheelchair she'd ever spoken to.

Speaker:
02:03:30
19 years old, right?

Speaker:
02:03:32
And so I said, oh, you're about to be

Speaker:
02:03:34
from a small town, a village?

Speaker:
02:03:36
She said, oh, I'm from Toronto.

Speaker:
02:03:38
I was like, oh yeah, that's a small

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02:03:39
town.

Speaker:
02:03:40
I think there are no disabled people in

Speaker:
02:03:42
Toronto.

Speaker:
02:03:43
I don't think there are any wheelchairs

Speaker:
02:03:44
there.

Speaker:
02:03:45
But it happens.

Speaker:
02:03:46
It absolutely happens

Speaker:
02:03:49
for a variety of reasons.

Speaker:
02:03:51
But it's something that's happening

Speaker:
02:03:52
less, and I'll tell you why.

Speaker:
02:03:55
So in my first-year class, my first

Speaker:
02:03:57
day of class at King's,

Speaker:
02:03:59
I always ask the same question, which

Speaker:
02:04:01
is, how many of you had a disabled

Speaker:
02:04:03
student in your class?

Speaker:
02:04:05
And when I started asking this question

Speaker:
02:04:06
back in 2014, I would get three

Speaker:
02:04:08
or four hands, maybe five, give

Speaker:
02:04:10
or take.

Speaker:
02:04:11
Now, one half of the class

Speaker:
02:04:14
put their hand up and say that at some

Speaker:
02:04:15
point in school, elementary or

Speaker:
02:04:17
secondary, they had a disabled student

Speaker:
02:04:19
that was in the class with them.

Speaker:
02:04:22
And I think that helps,

Speaker:
02:04:24
right? Meeting disabled people,

Speaker:
02:04:26
getting involved in disability culture

Speaker:
02:04:28
and community, I think helps

Speaker:
02:04:30
to break down some of that stigma.

Speaker:
02:04:32
But often it's a

Speaker:
02:04:34
choice. It's a choice you have to make.

Speaker:
02:04:36
And so why should you make that choice?

Speaker:
02:04:38
Well, because frankly, disabled people

Speaker:
02:04:40
are amazing.

Speaker:
02:04:41
They really are.

Speaker:
02:04:42
Very cool, very interesting,

Speaker:
02:04:44
with a billion different backgrounds,

Speaker:
02:04:48
a billion different interests,

Speaker:
02:04:50
a billion different stories, a billion

Speaker:
02:04:52
different experiences that you

Speaker:
02:04:54
can not just learn from, but

Speaker:
02:04:56
also find mutuality in.

Speaker:
02:04:58
Because ultimately the disabled story

Speaker:
02:04:59
is the story of humanity.

Speaker:
02:05:00
It's the story that we all experience,

Speaker:
02:05:03
which is not

Speaker:
02:05:05
really knowing where we fit in the

Speaker:
02:05:06
world, not really knowing what's coming

Speaker:
02:05:08
next, but knowing that

Speaker:
02:05:10
we want to do something, we want to be

Speaker:
02:05:12
something, we want to be a part of this

Speaker:
02:05:14
world that we live in.

Speaker:
02:05:16
And to me, that's human.

Speaker:
02:05:18
That's the human experience.

Speaker:
02:05:21
100%. 100%. Thank you so much.

Speaker:
02:05:23
I've loved this conversation so much,

Speaker:
02:05:25
but it's time for our final question.

Speaker:
02:05:27
What keeps you growing?

Speaker:
02:05:29
Oh, spite,

Speaker:
02:05:32
I would say.

Speaker:
02:05:35
That's my favorite answer so far.

Speaker:
02:05:37
Spite. Spite.

Speaker:
02:05:39
Let's hear it for spite?

Speaker:
02:05:40
Yeah, yeah, spite, I think is one

Speaker:
02:05:42
of them.

Speaker:
02:05:44
There have been numerous times where

Speaker:
02:05:45
doctors have said, you're dead,

Speaker:
02:05:48
you're going to die.

Speaker:
02:05:51
Several times this has happened, and

Speaker:
02:05:52
I'm still here, which I think means

Speaker:
02:05:54
that I'm immortal.

Speaker:
02:05:55
I don't know that I'm ever going to

Speaker:
02:05:57
die.

Speaker:
02:05:59
Which is great.

Speaker:
02:06:00
I'm actually very happy about that.

Speaker:
02:06:02
Congratulations on immortality.

Speaker:
02:06:03
That's very good.

Speaker:
02:06:04
It seems that's what the science is

Speaker:
02:06:06
telling me at the moment.

Speaker:
02:06:09
And anyway, I've long sort of joked.

Speaker:
02:06:11
They say, you know, how do you do it?

Speaker:
02:06:13
How do you keep on making it through

Speaker:
02:06:14
these near misses?

Speaker:
02:06:15
And I'm like, well, I'm really stubborn

Speaker:
02:06:18
and I'm too spiteful, I think, to

Speaker:
02:06:20
die.

Speaker:
02:06:21
And so I think that spite

Speaker:
02:06:23
has been a prime motivator

Speaker:
02:06:25
in my life, in some sort

Speaker:
02:06:27
of silly ways that, you know, people

Speaker:
02:06:29
having lowered expectations for me has

Speaker:
02:06:31
just meant that I want to far exceed

Speaker:
02:06:33
those expectations.

Speaker:
02:06:34
I'm totally the like, just watch

Speaker:
02:06:36
me kind of person, right?

Speaker:
02:06:38
And so, you know, having a teacher told

Speaker:
02:06:40
me when I was younger, you know, you're

Speaker:
02:06:42
not going to amount to much as a

Speaker:
02:06:43
disabled person. It was just

Speaker:
02:06:45
watch me.

Speaker:
02:06:46
I'm going to send you a copy my

Speaker:
02:06:47
dissertation when I'm done.

Speaker:
02:06:49
You know, it was, you know, you're not

Speaker:
02:06:51
going to get employed, you have a

Speaker:
02:06:52
disability, just watch me.

Speaker:
02:06:54
It's, oh, you're going to lose your

Speaker:
02:06:55
friends when you get puberty because

Speaker:
02:06:57
you have a disability, just watch me.

Speaker:
02:07:00
And so, I think one of the things that

Speaker:
02:07:01
really has sort of driven me forward is

Speaker:
02:07:03
that I refuse to let ableism win.

Speaker:
02:07:05
I will not do that.

Speaker:
02:07:07
I cannot do that.

Speaker:
02:07:08
And so, I'm going to spend my life

Speaker:
02:07:10
beating down on ableism until

Speaker:
02:07:12
I wrestle it into submission.

Speaker:
02:07:14
And I might not win that fight and

Speaker:
02:07:15
that's okay, but at least I'm going to

Speaker:
02:07:18
tucker it out for the next pro wrestler

Speaker:
02:07:20
that's coming behind me that's going

Speaker:
02:07:22
to fly in from me afterwards.

Speaker:
02:07:24
And hopefully they too will be driven

Speaker:
02:07:25
by spite and then just

Speaker:
02:07:28
absolute refusal to be all the things

Speaker:
02:07:30
that people say that we are when we

Speaker:
02:07:31
aren't.

Speaker:
02:07:32
You've changed my mind on spite.

Speaker:
02:07:34
Yeah, me too. I'm like positive about

Speaker:
02:07:36
it.

Speaker:
02:07:36
There you go. There you go.

Speaker:
02:07:38
Where can people find out

Speaker:
02:07:40
about the work that you're doing?

Speaker:
02:07:42
Oh, man.

Speaker:
02:07:44
I'm terrifyingly easy to find on

Speaker:
02:07:46
the internet.

Speaker:
02:07:48
So, that's not great.

Speaker:
02:07:50
So, find me really easily if you look

Speaker:
02:07:52
for me online.

Speaker:
02:07:53
We'll put it in the footnotes.

Speaker:
02:07:54
But you'll find me at jeffpreston.ca.

Speaker:
02:07:56
It's the blog that I've written for

Speaker:
02:07:58
decades.

Speaker:
02:08:00
Most recently, I have a

Speaker:
02:08:02
podcast of my own called Invalid

Speaker:
02:08:04
Culture.

Speaker:
02:08:05
It's a podcast that's based on

Speaker:
02:08:07
weird, strange, bad movies

Speaker:
02:08:09
about disability that I find.

Speaker:
02:08:11
I've been gathering during COVID.

Speaker:
02:08:13
So, these are not the movies you've

Speaker:
02:08:14
ever heard of before.

Speaker:
02:08:15
These are weird things

Speaker:
02:08:17
I've found.

Speaker:
02:08:18
Cool! I love that!

Speaker:
02:08:19
So, I bring people on, I torture them.

Speaker:
02:08:23
If you need an unqualified guest to talk about movies,

Speaker:
02:08:25
sign me up.

Speaker:
02:08:25
I would love, I will find you a

Speaker:
02:08:28
horrendous film.

Speaker:
02:08:29
I would love that.

Speaker:
02:08:31
Crossover? I'm serious.

Speaker:
02:08:32
So, yeah, it's Invalid Culture.

Speaker:
02:08:34
You can find us at invalidculture.com...

Speaker:
02:08:37
...or wherever you cast your pods.

Speaker:
02:08:39
And you'll find me in Kings University

Speaker:
02:08:42
College in

Speaker:
02:08:47
the Disability Studies program,

Speaker:
02:08:48
teaching in the first year but also across the spectrum.

Speaker:
02:08:50
And always out throwing stones at

Speaker:
02:08:52
various organizations and government

Speaker:
02:08:54
officials.

Speaker:
02:08:55
Wherever I can cause trouble.

Speaker:
02:08:57
Yes. Wonderful.

Speaker:
02:08:58
Lovely!

Speaker:
02:09:00
Thank you so much.

Speaker:
02:09:01
So, so nice chatting with you.

Speaker:
02:09:02
Yeah, thanks for having me.

Speaker:
02:09:04
Thank you.

Speaker:
02:09:04
Thank you.

Speaker:
02:09:06
If you like this show, please like

Speaker:
02:09:08
and subscribe on YouTube and rate and

Speaker:
02:09:10
review us on Apple Podcasts, Spotify,

Speaker:
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or wherever you get your podcasts.

Speaker:
02:09:16
We're preparing a bunch of special

Speaker:
02:09:18
extras for our fresh and nutritious

Speaker:
02:09:20
newsletter subscribers.

Speaker:
02:09:21
Sign up for free at growabilitypod.com.

Speaker:
02:09:25
GrowAbility is hosted by Joe Gansevles

Speaker:
02:09:27
and Holly Pugsley.

Speaker:
02:09:29
Special thanks to this week's guest,

Speaker:
02:09:30
Jeff Preston.

Speaker:
02:09:32
Our show is produced by Adam Caplan,

Speaker:
02:09:34
Joe Gansevles, and Holly Pugsley.

Speaker:
02:09:36
Production support from Oliver

Speaker:
02:09:37
Gansevles, Evan Gansevles,

Speaker:
02:09:39
Scott Hohn, Kevin Labonte, Paul

Speaker:
02:09:41
Rogers, Dorantina Uka,

Speaker:
02:09:43
and Allan Williamson.

Speaker:
02:09:45
Holly Pugsley of Just Keep Growing art

Speaker:
02:09:47
directed this episode and made sure the

Speaker:
02:09:49
plants looked great.

Speaker:
02:09:51
Audience strategy by Dorantina Uka and

Speaker:
02:09:53
Tess Alcock.

Speaker:
02:09:54
Our theme music is Wandering William by

Speaker:
02:09:56
Adrian Walther and can be found on

Speaker:
02:09:58
Soundstripe.

Speaker:
02:10:00
Adam Caplan, that's me, is web.isod.es

Speaker:
02:10:02
Executive Producer, and Sammy Orlowski

Speaker:
02:10:04
is our senior creator.

Speaker:
02:10:07
Thanks to TechAlliance of Southwestern

Speaker:
02:10:08
Ontario, including Farida Abdelnabi

Speaker:
02:10:11
and Sarah Edmondson, for letting us

Speaker:
02:10:13
shoot at their beautiful offices.

Speaker:
02:10:15
Special thanks to Leanne Gansevles for

Speaker:
02:10:17
the support and yummy food, Hubert

Speaker:
02:10:19
Orlowski for helping our podcast sound

Speaker:
02:10:21
great, and Gabor Sass for making

Speaker:
02:10:23
some great introductions.

Speaker:
02:10:24
GrowAbility is a web.isod.es Production

Speaker:
02:10:26
and is produced with the support and

Speaker:
02:10:28
participation of the team at The Patch

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02:10:30
and Hutton House.

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