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.

Hey Holly, who's your favorite

superhero?

Poison Ivy, of course.

Isn't Poison Ivy a villain?

Hey, one person's villain is another

person's hero.

Fair enough.

Who's your favorite superhero?

Oh, Sprocket Man, of course.

That sounds made up.

Sprocket Man is totally not a made up

thing and his superpower is exactly

what you think it is.

He's a cyclist who wears a cape, isn't

he?

Well, no cape but plenty of safety

tips.

Whatever rings your bell, Joe.

From webisodes, this is GrowAbility,

a digital documentary at the

intersection of urban agriculture, food

security and community.

On this episode, we speak with

professor, motivational speaker,

podcaster and staunch advocate for

individuals with disabilities.

Including himself.

Including himself, Dr. Jeff Preston.

Holly, we've spent a lot of time on the

show talking about the grow part of our

name, but not the ability part.

It's true. We both work with people

with disabilities at The PATCH,

blending urban agriculture with skills,

training, volunteering and connecting

to the community.

But we haven't really brought out those

themes into this show yet.

And that's where Dr. Preston comes in.

One of the many things I love about

Jeff's work is he looks at a whole

bunch of parts of our community through

an equity driven lens.

I want him to talk about how social

policy negatively impacts both the

disabled community and the way that

they impact those experiencing poverty.

What about you?

I'm just looking forward to having

another person with fantastic taste in

clothes on the pod.

Of course you are.

Before we meet Jeff, if you like this

podcast, please rate and review us.

Or if you're watching us on YouTube,

please like and subscribe.

Plus, when you sign up for our free

fresh and nutritious newsletter, you'll

get all the latest exclusive goodies

delivered right into your inbox.

And we want to hear from you.

Send emails to hosts at growabilitypod

.com.

We want your ideas, questions or

suggestions for guests in future

episodes.

And a special thanks to TechAlliance of

Southwestern Ontario for inviting us to

use their weirdly perfect space for

this series of interviews.

And now let's get this party started

with Dr. Jeff Preston.

Jeff, thank you so much for being here

today.

Yeah, absolutely.

I'm so happy to be here.

And do I have this right?

Did you start fundraising by doing a

public speaking gig for Muscular

Dystrophy?

Dystrophy, yes.

Dystrophy, okay.

Could you tell us a little bit about

that?

Yeah, so many moons ago,

I was just a little child,

maybe. I was about three years old.

And there was this volleyball

tournament in my hometown run

by the firefighters to raise money

for muscular dystrophy research.

And so I was there and

they asked me, they said, oh, you

should come up and say something.

It was my birthday around

then, right around my birthday.

So up I went, I got a happy birthday,

and I thanked people for coming out.

And that was sort of the beginning of

the end for me as

a fundraiser.

From there, I started going to that

tournament every year.

That grew into an

even bigger event and then eventually

into working as a poster child

for MDC and running

on golf tournaments.

And kind of never stopped asking

people for money for the

rest of my life.

There's nothing wrong with that.

No.

Let's start with some common ground.

Sure.

What is a disability?

That is a fun question.

So I think there's the definition,

there's the dictionary definition of

what we understand to be disability.

I actually take a very different

perspective on disabled because

I think that we focus a lot

on bodily impairment,

right? We talk a lot about disease

and injury and those sorts of things,

and we understand disability in that

sense. I actually add another layer to

it. I actually think that we are

disabled not just by what is within

our bodies, but also what we find

outside in the world beyond us,

because we have constructed this entire

world for a certain kind

of person, which results in

those who don't fit that category

or don't fit that ability grouping

to now be disabled.

So I would argue that I'm just as

disabled by muscular dystrophy

as I am by stairs

at the front of every building we build

or very narrow aisles

in the stores that we construct

or in the classrooms that we

design that have steps to get

up to the tiered seating.

I think that these factors are just as

disabling as the physical

impairment that a doctor says is

the disability.

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

this podcast will drop in 2025.

Yeah.

And we as a community

made

a vow to have something ready

by 2025.

Yeah, yeah.

Are we there?

Nope.

Spoiler alert.

No.

We are not.

Not even close.

I would say that we've made progress.

I think it's important for us to

remember that disability rights and

the disability rights movement as a

semi-organized asynchronous

grouping really

has only been operating since like

the 60s, maybe the

70s, really the 80s,

which means that we're also one of the

youngest civil rights movements in

North America. Having said

that, if you look at what the world

looked like when I was born in 1983,

and you compare that to the

world that we're entering into in 2025,

fundamentally it's a different world

for disabled people.

We've made incredible gains

in terms of access

to programs and services, into access

to educational opportunities,

access to employment opportunities.

There's a really good, happy

story.

At the same time, there's

the fundamental reality that disabled

people do not experience the

same life as a non-disabled person

right now in London, in

Ontario, in Canada, in

planet Earth.

Right. And maybe for

our listeners and our viewers, we

should talk about what that community

vow was.

Yeah, of course.

So, again, if we look back,

flashback, 2005,

that was actually 2003, 2004, I

couldn't take when this happened, but I

remember waking up as a university

student and I

flipped on the news in the morning and,

you know, in my breakfast, and I see

this big announcement, Ontario

government promises by 2025,

Ontario will be fully accessible.

This was the vow. And we would do it

through this piece of legislation

called the AODA, the Accessibility for

Ontarians with Disabilities Act.

I remember hearing that news

and I had this sort of two simultaneous

thoughts.

So, on the one thought,

I was like, wow, that's

amazing. It's not every day you hear

about disability news, on the

news. Often not less stories about

people like me on the news.

So, that was interesting.

Number two, I never

imagined that I would see a fully

accessible province in my lifetime.

Right.

So, I had sort of assumed that what

I lived in at that point would be

what I would live in basically forever,

that new buildings would be kind of

accessible, people would do their best,

but much of this world would remain

inaccessible and much of the

accessibility I would have to build for

myself, but I'd have to bring access

wherever I went.

And I suddenly had this moment of

realization that I wasn't

experiencing the province in the

same way that everyone else was.

And that might seem obvious or

simplistic, but it has never occurred

to me that another world was

possible.

And so, this promise that we made in

2005 was a

remarkable future-looking

promise that said we

can, and not just can,

but should, not just should,

must do better for

disabled people in this province.

That was extremely exciting.

And so, I said, I want to get involved.

Can I ask you a sage question?

Sure.

Why haven't we made the progress

we promised in the last 20 years?

Man, how much time do we have?

We have about eight hours, I think,

right? The podcasts are usually about

eight hours long, I think, usually.

You know, for when you're driving from

London to Montreal.

So, okay, there's a few things.

So, thing number one, I think

the AODA got bogged down in politics.

As everything does.

Of course.

And so, there ends up with a lot of

negotiations that are happening to try

to get the legislation passed.

And often, in my opinion,

humblest of opinions as it is,

we often lost many of

those negotiations.

You have to understand that the AODA is

a group of

legislative pieces, standards, that

were all created by a bunch of

people together, put them in a room,

and have them hash out what the

standard looks like.

What that meant was that many of

the standards, all of the standards,

were created with 50%

industry, which essentially

means 50% predominantly

non-disabled people, and 50%

disabled people, allies,

service providers, et cetera.

What that meant was that for the last

20 years, disabled people have

been expected to negotiate the

definition of accessibility with

people who stand to benefit

from reducing the requirements

of accessibility legislation

and standards.

So, quite literally, you're going in

front of, say, a

mega corporation who does

not want to spend any more money on

accessibility that are trying to keep

costs down, and you now have to

argue with that person what

is or isn't accessible.

So, I think that was a

not right way to move forward

in building these pieces of

legislation. That slowed us down.

I think, number two, we were

dramatically slowed down by

a lack of funding.

I don't think the Ontario government

realized how much it was going

to cost to become fully

accessible, quote, unquote.

It was going to take an enormous amount

of money, not just for physical

changes, but also for education,

also for developing new standards.

This is something that the world had

never really done before,

that Ontario was trying to not just

invent the wheel, but invent an entire

vehicle where all they really had were

stones and a couple chisels and

axes, right?

And so, I think that was another issue.

And I think really the final real

problem with the AODA is

that we never were able to come to

terms with a compliance measure.

So, the AODA was supposed to have

teeth. It was supposed to have the

ability to provide fines and

to compel people to become

accessible. The idea being if

it's more expensive to

remain inaccessible,

people will then choose to become

accessible.

That's the philosophy.

The compliance measure didn't really

get off the ground until years

after the legislation was passed.

And to this day, we actually don't

even necessarily know how

many organizations have

been fined under the compliance

measure. But my sense is,

you could probably count on one or two

hands the number of organizations that

have faced any sort of financial

penalty, despite the fact

that barriers remain everywhere,

that many organizations are

non-compliant, whether they know it or

not. And so, that inability to compel

people to even follow the rules that

do exist has meant that we've

been extremely slow out

of the gate to try to build an

accessible province.

I feel there's a huge value proposition

in meeting the standards.

Am I wrong on that?

Absolutely. Absolutely.

I don't think that people realize how

big the disabled population is,

right? So, Statistics Canada tells us

somewhere around 20% to 25%

of Canadians identify with a

disability.

Most researchers, myself included,

believe that number is actually

probably too low,

that it actually is probably much

higher.

Now, it depended, again, as you say,

how you define what a disability is.

But the reality is there are disabled

people everywhere.

There are disabled people that want to

participate in our society, who

wish to get jobs, who wish to

spend the money that they earn at those

jobs, that want to live a life just as

any other Ontarian.

And so, if you are a business, for

instance, and you go the extra step to

become accessible, you've now opened

yourself up to not just new

consumers, but new consumers who

have very few options in terms of

where they may want to go to shop.

So, I think that there's this economic

benefit to it.

There's also the downstream benefit of

accessibility when we don't

necessarily know what the future is

going to hold. And so, what if you

or one of your employees encounters

a disability? What if they get an

injury or something happens?

And now you have an employee who

may not be able to work in your space

because your space isn't accessible.

And if they leave that job, they're

taken with them all of that

institutional knowledge, all of that

training, all of that quality skill

that has been built up during

their employment.

So, for me, I look at accessibility not

just as opening up new markets, not

just opening up new opportunities

for new customers, but I see

it also as future-proofing yourself

from the magic reality

that is the human body is

fragile, it is vulnerable, and

it is subject to change throughout all

of our lives.

Is this exclusive to

Ontario or is this everywhere?

Or is there a sliding scale?

This is a real fun question.

So, in Canada, we have a

patchwork of accessibility law.

So, every province does it different,

and everyone is kind of approaching

this from a similar, but not similar

at all sort of perspective.

And you've got a bunch of other

interconnecting industries,

organizations, sectors, that

are very different from province to

province, right? So, the way that they

do medicine in Alberta is different

than the way they do medicine in

Ontario, which is different than how

it's done in Quebec and different how

it's done in BC.

And so, all of those programs and

services, whether it comes down to

therapy, access to adaptive devices,

occupational therapists, physical

therapists, speech language pathology,

all these different sort of factors,

that is done differently in many of

our provinces.

And so, too, is accessibility

legislation.

For a lot of provinces are looking

on Ontario.

A lot of Canada looks at

Ontario and says, what did you do for

the AODA?

We want to do something similar, but we

also don't want to make the mistakes we

made. And so, we are sort of

trailblazing in Ontario in that sense.

But the problem then means that if

I were to pick up shop and move

somewhere else in Canada, I would

actually have a radically different

experience from one province to

another, which begs the question,

do disabled Canadians enjoy

the human right, the enshrined right

in Canada of free movement?

We are supposed to be able to move

anywhere in our country as

Canadians. I would argue we

don't have that as disabled people.

So much great insight.

You're currently a professor of

disability studies at King's

University in London, but

you have a Master's and a Doctorate

in media studies.

What's the connection there?

Yeah, absolutely.

So, growing up, I was doing a lot of

media work as I was doing my

fundraising. I was doing some TV stuff,

doing lots of radio stuff, doing lots

of public speeches, and I became really

interested in media.

So, I actually thought that I wanted to

be a journalist.

That was my dream originally.

I loved the guys that I was meeting in

the radio world, loved the women that

was meeting in journalism,

and I thought- in print journalism,

I thought maybe this is for me.

Maybe I should do this.

So, I go to school for media studies.

I do an internship at a local

newspaper- two months,

and I was like, nope, I

do not want to be a journalist.

Not for me.

Way too much hate mail.

Not interested.

So, I was like, no, that isn't for me.

But as I started university here

in London, I fell in love with

school.

I was not a school kid growing

up. I did not like school.

I was the kid who, like, every morning

it was, mom, I think I'm sick.

She's like, I'm sure you are.

Off you go. Go to school.

When I got to university, though, I

actually fell in love with education.

I fell in love with the pursuit of

knowledge.

And I remember being in the first year

of class, I'm looking at a professor,

the sage on the stage, and I'm

thinking, I want to

do this. I want to be a teacher.

I want to teach people.

I want to research.

I want to learn new things and share

that information with the world.

And that's when I began to start this

pursuit. And so, my original

research was really focused on

understanding how disability is

represented in popular culture.

I was fascinated in the disconnect

between the stories we tell in

the media versus the lived reality

of disability, which often were,

paradoxically,

completely incongruent.

And so, that was really sort of the

early days of my research.

I was trying to understand that

question.

And it's from there that I then got

sucked into this world, this new field

of study called disability studies,

or now, critical disability studies.

I don't know who you talk to.

And so, I started bringing that work

into the world of media studies,

trying to mash together this cultural

theory with disability studies and

critical disability theory, bringing

them together to try to have a new way

of thinking about how we tell stories

about disability, how we imagine

disability, and how that cultural

construction of disability actually

really matters because the

way we talk about disability influences

what we do about it.

And that includes things like

legislation, like the AODA.

Absolutely.

We need knowledgeable teachers.

We need, I use this word

and you used this word, sages.

Right.

There's also a component of

representation.

Yeah.

How important is representation?

Unbelievably important, I would say.

I think it's critical.

I'm biased, of course.

I'm a media studies scholar.

So, of course, I'm going to say it's

the most important thing.

But I think that representation

genuinely really matters because I

think that representation not

just allows us to tell our own

story, to give legitimacy to

lives with disabilities, to say that

this is a real experience and it

matters, that there's meaning in

it. And it's meaning that we, the

disabled, should be creating,

that we should be the ones telling that

story.

But I think that stories also provide

us that opportunity to invite people

in to our lives, to invite

people into our experience, not

in the sense of like walk a mile in our

shoes, but at least to get insight,

to develop empathy for

a different way of living, right?

Right.

And so, I think that media has this

powerful ability to actually

invite people to

our worlds, to form mutual

relationships into

different worlds, different ways

of being.

And I think more than anything,

media is fantasy, right?

Yes.

We often tell stories about the world

that we live in, but we often tell

stories about the world that we wish we

lived in, about a world that we aspire

to live in.

Because in media, movie magic

says that anything is possible.

And so, something I think that's really

fascinating is how as

we build and tell stories about

disability, how can we also

be telling and showing a

universally accessible world in

a way that's not possible in the

real world? And how can that then be

something that we aspire to?

In the same way that you look at

something like Star Trek, which has

inspired countless technical

innovations.

Absolutely.

Because it said, this is what the

future could look like.

And an engineer says, I'm

going to figure out how to make that

happen.

Right.

I'm going to make that iPad,

essentially, that I saw on Star Trek.

I think that the same could be done

with accessibility and inclusion.

I really like that perspective a lot,

actually. Yeah, it's beautiful.

Groups like the Disability Screen

Office and companies like Accessible

Media Inc. have taken a

nothing-about-us-without-us approach

to disabled representation in the

media. Is this the right path forward,

would you think?

Absolutely. Yeah, we need to get more

disabled people involved.

I actually wonder how many flubs,

when it comes to telling stories about

disability, how many of those flubs are

generated by the fact that no

one involved in this production

actually had a disability.

And so, there are all these things that

you see. For instance, I see

a lot of people in wheelchairs that

do not make sense in the

real world, right? So, I have a

character, and they'll be in this

rickety hospital chair.

And I'm like, no, a guy

with a spinal cord injury like that,

they are not going to be rolling around

in this heavy, clunky hospital chair.

They're going to be in a light,

titanium, ergodynamic thing,

right?

Right.

Absolutely. Of course they would be.

Why would they be in this unaesthetic

chair?

And so, I think that there is this sort

of reality that you can be brought

in by having people actually

there to say, actually, that's

not what that's like.

Right.

So, to give you an example, I have a

buddy named Josh Cassidy.

He and I grew up together.

We went in very different paths.

I went to be an academic.

He became a Paralympian.

And so, he is a Paralympic wheelchair

racer. And in his spare time,

he does media.

And so, he was in a Hallmark movie.

He was hired as a- He's a secondary,

he wasn't the main character.

He was buddies of the main character.

So, this is a Christmas movie, rom-com,

you know, Hallmark.

What was fascinating for him in this

process, as he shares with me,

is that throughout the process, the

director was asking him constantly,

is this right?

Do we have this right?

And so, there was one scene in

particular where he goes to a

cafe and he has to enter the cafe,

order a coffee, go and sit down, and

then he has a conversation.

And so, while they were doing it, Josh

was saying, he's like, oh, no, like,

I wouldn't order this way.

This isn't how I order.

They had it all set up where they had a

whole thing. It wasn't right.

It didn't feel natural to what he would

do as a wheelchair user.

And so, they said, great, well,

show us. Show us what you would do.

And so, they walked through the steps.

They adapted the scene.

They changed the format of it.

And as a result, they got something

that was actually authentic to what a

wheelchair user would experience as

they're moving in and out of a

coffee shop, right?

And so, I think having that on the

ground insight is actually really

important, and it cannot be replicated.

You can't just hire an expert.

You've got to have lots of different

voices, lots of different experiences

to be able to make better

choices.

Now, I feel this

director may be a unicorn.

Hah! Yes, yes.

I think there

may be a misjudgment of

abilities.

You know, when we look at

abilities-first.

I shouldn't say when we look at

abilities-first. People should look at

abilities-first.

Yeah.

How do you feel?

Do you feel that there is a misjudgment

of ability based on

maybe people that,

you know, physical,

for instance?

Oh, big time, yeah.

I think that one of the things we hear

a lot when it comes to sort of bigger

media productions, we're looking at

Hollywood, Toronto, British

Columbia, the sort of the major

producers.

There is this belief that not

only will it be more expensive to have

a disabled actor or a disabled cast

member, they believe that they

will be slower to change.

I've heard people not getting roles

because they thought it would take them

too long to change costumes.

And they're like, you know, time is

money, we can't wait.

I mean, not necessarily.

For some, maybe not necessarily.

A really fun example, I think, of this

is Jared Leto, which literally

no one has ever said, fun example, and

Jared Leto in the same sentence.

No, this is the first, not just on

this podcast, but universally.

Generationally, this has never happened

together.

So Jared Leto was

in this movie, Morpheus, which

is historically one of the

worst movies ever made.

I've heard that.

Not great.

But in this, he is a character who uses

a wheelchair, and Jared Leto was

famously a method actor.

And what's fascinating is if you hear

some of the stories from the

set, it was a

nightmare because Jared Leto was

taking like two hours

to go pee.

He was taking an inordinate amount of

time. He was driving himself

and limping his way and

really exaggerated all these physical

abilities. There was a negotiation.

And they finally got him to agree to

use a wheelchair to go from point

to point to try to speed up the

transit or whatever.

And what I find fun about this, and

I mean, you're going to be like, Jeff,

that isn't fun at all, you're the

worst, what is wrong with you?

But what I find fun about it is that

I've been.

We'll sign a a petition.

Yeah, exactly.

Cancel Jeff Preston.

But I think that Jared Leto is

pantomiming all

of the negative understandings of

what we think disability is,

right? That it's slow, that it's

agony.

He was pretty mean on set, apparently.

There's a bitterness involved.

And so I think this is such a perfect

example because I think Jared

Leto unintentionally was reflecting

exactly how we

understand- or think we understand

disability, which is not

at all the reality for most

people with disabilities.

In fact, I would argue barely any.

When people talk about diversity,

equity, and inclusion, they

often hold race, gender, and other

forms of ethnographic equity in

mind.

Is ableism and disability part of the

DEI conversation?

It needs to be.

It absolutely needs to be, 100%.

I think that often it falls a little

bit off the radar.

But it needs to be there, and it

especially needs to be there because

of the intersectional nature of

disability, that disability

is a factor that could

apply to anybody.

Every race, every age,

every religious background, every

gender, anyone can have a

disability.

And with that comes very different

experiences.

So my experience as a white man,

middle-aged, educated with a physical

disability is going to be radically

different than somebody with a

different set of intersecting identity

factors. That to me means

that ableism and accessibility

actually needs to sit at the base

of our EDI work.

Rather than being something that we

tack on after the fact,

accessibility and ableism and

anti-ableism in general should actually

be sitting at the base of our EDI work,

upon which we build everything

else. Because disability is

everywhere.

Whether we want to believe it or

not, we are everywhere,

and we always have been.

I mean, find me a historical figure,

and I will find you a disabled person.

Absolutely.

When it comes to inclusion, I've heard

you talk about a lack of accessibility

being a form of censorship.

Right.

Can you unpack what that means?

Yeah, absolutely.

So I think that something that is

fascinating is how

we assume that disabled people don't

exist.

And we assume that they don't exist

because we don't see them.

I've often joked that if I were to ever

write a memoir, and I shouldn't, my

life has been fairly boring, but

if ever did, the title of my memoir

would be The Only Guy in a Wheelchair

in the Room.

Because very often when I'm in rooms,

I am the only person in

a wheelchair, which seems statistically

impossible.

It seems very unlikely that

every time I go to the movie theater, I

would be the only wheelchair user

rolling up to Cineplex.

The only, when I roll up to the Grand

Theater, that there's no one else in

that wheelchair section.

It seems very strange.

But I think of it a little bit

differently.

So the metaphor that I use is

that movie Field of Dreams.

I don't know if you know that old movie.

I know that one.

It's a baseball movie.

It's a good one.

Right?

One of the things in the movie is that

there's all these ghosts.

They're in the cornfield.

And no one knows the ghosts are in the

cornfield, but they're there.

And the sort of saying in the movie is,

if you build it, they will come.

And this is how I think about

accessibility, is that disabled people,

we are the ghosts in the cornfield.

You don't know us, but we're out there.

We are haunting these spaces outside

of your sight.

But when you build accessible, when

you add accessibility features to your

spaces, suddenly

they show up.

Suddenly there are disabled people kind

of everywhere.

And so what I ask us to think about

always is who

is in the room and who is

not, and why?

But if they're not in the room,

they're not a part of the conversation.

Right.

So there was a study recently done of

people working in the Ontario

government.

And that study found, this is

self-disclosure, but it found

that there's less than 5%

of disabled people that are operating

within our government structure right

now, which means that 20%

of the population is not really

getting a fair representation in our

government.

And so when you think about censorship,

who is not in the room?

Who is not voicing their opinion at

Queen's Park?

Disabled people.

That's right.

Predominantly.

And if we are not there to speak,

perhaps that explains why there wasn't

urgency to pass compliance

measures for the AODA.

Maybe that explains why there wasn't

urgency to pass the

post-secondary standard or the

hospital education, sorry,

healthcare standard of the AODA.

Maybe that's why there isn't any real

concern that we're not going to

meet our standard,

our fully accessible Ontario by 2025.

If we're not there, we cannot speak.

And if we're not speaking, we cannot be

heard. And if we're not heard,

nothing will change.

Can I ask you a naive question?

Please, I'd love that.

Those are actually great questions.

You've done really good.

Why can't people just follow your

blueprint?

Well,

it would be bad.

It would be a bad choice.

My life is littered with mistakes.

I am here because of the mistakes I've

made, which is a good thing,

I think, actually, in many ways.

You know, I enrolled at Western.

I believed I had been enrolled into

a web design program, and

I arrived and learned that it was not a

web design program, but I fell in love

with it and got a PhD.

I was like, I'm going to be a

university professor. This is what I

want to do. I graduate with a PhD,

and I got not a lot of tenure-track

jobs in this world of university

anymore. And I got hired at Fanshawe

College, and I'm like, this

is the best. I love it.

This college stuff is amazing.

I love this classroom.

I love the students that are here.

This is sweet. I never want to leave.

And then two years later, I see a job

posted for disability studies at

King's, and I did leave college.

And so, I don't know that

people want to follow my blueprint,

necessarily.

But I do think that we have to remember

that I, myself, have an enormous

amount of privilege.

I've been extremely lucky

to be where I am today.

I would not have been here without

an enormous amount of luck, without an

enormous amount of public support, and

without some really key advantages

that I received when I was born.

Namely, I was born with a physical

disability.

I've had my disability my entire life,

so there was no adaptation for me.

This has always been normal.

There hasn't been anything different

than using a wheelchair.

It's who I am. It's part of me.

I was very lucky to start talking

young and to be doing public speeches

when I was five, six years old,

developing that skill, that ability to

articulate myself, being kind

of smart, being able to navigate

school well, having two gainfully

employed parents with good insurance

that were well-known and well-respected

in the community, that had a ton

of community members that rallied

behind our family to help us when we

couldn't afford the things I needed to

live independently, get it into the

good school.

Having London similarly accept

me and wrap around me in

the way that Port Elgin did.

I've been uniquely extremely

lucky, and I'm absolutely

so grateful and thankful for everyone

that's made my life possible.

What horrifies me is the

number of people that don't have that,

that do not have the access that I've

had, that haven't had the privileges

that I've had in my life.

And so people will look at me and say,

well, Jeff Preston, he's a PhD.

He's living independently.

He's doing great. He's got a van.

That was not without an enormous

amount of work and predominantly not by

me and by people around me that cared

about me, that wanted to see me do

better.

And unfortunately, not everyone has

that.

And so for me, I think a better

way of looking at it is not how can

people follow in my footsteps, but

rather how can my footsteps provide

a pathway for

more people to follow behind me,

so that they don't need to be lucky.

They can just be themselves,

and they can thrive in this world like

anybody else.

Not everybody's lucky.

Not everybody's lucky.

I've been working in skills development

and job development a long

time.

For, one would say, for the

disabled community or abilities-first.

And I've been working in

assisting with food security.

A lot of people that I work with are

housing insecure.

These are at the top of my

concerns.

Absolutely.

How do you see these

things?

Lack of employment.

And we've touched on it a little bit.

Lack of employment.

Lack of access to housing.

These are things that, through my work

in support employment, I encounter

these conversations almost on

a daily basis.

Yeah.

It's disproportionate.

Absolutely.

Absolutely.

How do you see-

I think it's all interconnected in a

lot of ways. I think that one of

the big gifts, I think, of having a

disability is you're born into a

very complicated life.

And as a result, I think I have come to

embrace and understand complication

as the basis of everything.

Everything is complicated all

the time. And that we need to be

aware of that. We need to be ready to

address complication.

We can't assume simplicity.

And so, I think that when we look at

the experiences of disability right

now, I think things like housing

and food security are intimately

connected to access to

employment, to access to education.

All of these things are important,

and we have to manage them in

different ways.

So, it's not enough to say,

okay, we're going to ensure that

education is accessible.

People get educated.

They'll get jobs. They'll get housing.

It'll be great.

Everything's fine.

Actually, no.

Because there aren't a whole lot of

accessible houses in London, Ontario.

And so, even if you have a job, you may

not even be able to afford still an

accessible house, and if you can, you

might not even be able to find one.

So, there's another issue here.

We need to do a better job of building

accessible housing.

When it comes to those who cannot

work, there are a lot of people with

disabilities who just can't.

Either work at a full-time pace, or

maybe they work part-time,

possibly occasional.

Depends on the disability.

We don't have very good structures to

allow for that kind of flexibility,

right? So, things like the Ontario

Disability Support Program, it's very

on-off.

You're on it or you're not.

And there isn't really any in-between

there. Not a lot.

I think that if we had better

flexibility in some of these programs

that allowed people to work when they

can, not work

when they can't, but still be

able to enjoy quality of life,

that I think is really important.

That's an important part of the safety

net that we should be building around

people.

But access to employment is another

issue, right?

I think that we need to do a better job

of supporting businesses to not

just get accessible, but also to

understand the benefits of hiring

disabled people.

Because there are enormous benefits to

hiring disabled people, right?

Disabled people are far more reliable,

generally speaking.

We work our jobs longer, we're more

loyal, often.

We don't retire or quit jobs at

the rate that other groups do.

We often take less sick days.

And not only that, but you're going to

get someone who's a jack of all trades,

right? Because to be disabled, to

survive, you've got to do a little bit

of everything, and you've got to be

able to do it all at the same time.

So, you're getting a multitasker,

you're getting a problem solver, and

you're getting someone who has a deep

understanding that sometimes

life is hard, and

you just need a bit of help to get

by. To me, that's a model

employee.

I would hire five of those any day.

Do you feel that

that's reflected in current government

policy, taking the AODA outside

of that food insecurity,

lack of flexible employment, lack of

accessible employment?

No, not at all.

We don't have that locked away.

Not in any way. I don't know that we've

even started to be totally honest.

I would say, you know, it goes

all the way down to education all the

way up, right? So, if we look at the

ways that we're trying to do education

right now for people with disabilities,

we're seeing a real push toward

mainstreaming, which on its face

is not a bad thing.

I'm supportive of disabled people being

in the mainstream classrooms.

However, a lot of our mainstreaming

efforts have been take the person out

of special ed, place them in a

mainstream classroom, don't provide any

supports, right?

Give them an iPad, put them in the back

of the room, it's integrated.

That's not integrated.

No.

That's not good education.

That's just a full classroom.

We're letting people down.

Right.

So, we're setting people up to fail at

the education right off the bat,

primary school, secondary school, if

they could even get into university.

They get into university, and what do

you find when you arrive at the

university gates? Well, you find

articles like the one in the Walrus or

a recent one in the Chronicle of Higher

Ed, which basically states that

people are lying about their

disabilities, that children today are

too fragile, that they're making up

ADHD, that they don't know how to

focus, they don't know how to control,

they're taking advantage of services,

they're just trying to get an easy way

through the system.

And so, you have a culture of doubt

that you're entering into as a disabled

student when you get into college or

university right off the bat.

Scary.

It's brutal.

It's brutal.

And so, I think when we look at this

problem, when you say, well, what can

we do about housing?

Well, unfortunately, it's not just a

question of what do we do about

housing. It's also a question of what

do we do about education?

What do we do about employment?

What do we do about safety nets?

What do we do about equipment funding?

What do we do about tenant care

funding? What do we do about medication

and the way that we fund that type of

stuff? And also, you know, why don't we

throw mental health on the pile too?

What do we do about counseling,

psychotherapy, CBT, DBT,

and the other types of tools that could

really be helpful for people to live

better quality lives.

All of these conversations are actually

connected.

They're interlinked and then can't be

done in silos.

In the same way that for me,

I entered into a hospital, it is

not just one conversation with my

pulmonary, one conversation with

my neuromuscular, one conversation

with my surgeon, one conversation

with, you know, my occupational

therapist.

We do healthcare in teams because

different people have different

expertise, but they need to be talking,

sharing information, and planning

together.