All right, welcome to the AdaptX Podcast,
where we have conversations with individuals
who are building accessible businesses,
advocating for inclusion or excelling in adaptive sports.
Today we are joined by Dawn Oates.
Dawn, thanks for joining me today.
Well, my pleasure.
Long time listener, first time caller here.
Looking forward to learning from you today.
You wear many hats, so instead of me doing you a disservice
by trying to introduce you, I'll let you introduce yourself.
Great, yeah, thanks.
So when you and I met way back,
I was the executive director of the Play Brigade,
which is a nonprofit that I started in response
to recognizing that my daughter, who
was born with a spinal cord injury from my C-section,
she had very limited options on what she could do to play.
She was 18 months old, and I had been home with her
like she was a house cat.
And I thought, what would she be doing
if she were a kid that didn't have disabilities?
And that's what really prompted me to start the Play Brigade.
And at the time, we were doing accessible playgrounds
and adaptive equipment and things like that.
And our mission at that time was really
to create opportunities for inclusion in play recreation
and sports.
We really focused on what are the things
that people needed to get out in the community to do
to have fun, because what we find
is when someone has an illness or an injury or a disability,
there's this perception of the general public
often that there is a place for people with disabilities,
that they all go to some magical place
and get all their fun and sports and everything altogether,
and that everybody with disabilities knows everybody.
And that's really not the case.
And I was sitting in a place where
I had two other children who were twins.
They were 18 months old when Harper was born.
And then here I am with three little kids
under two years old at the time going, oh my gosh,
I can't take them to the same places.
Why don't we have more places where everybody participates
and everybody belongs?
And so the Play Brigade was really
designed to create community that encourages people,
no matter where they are, whether they have a disability
or not, that create community perception that this is an issue
and encourages barrier removal wherever possible
and encourages participation and a sense of belonging
among everybody in the community.
And so the idea would be conceptually
that, Brunjan, if you and I were going to go out to dinner,
we would know that we could take my daughter with us
if we wanted to.
And she's a wheelchair user.
And that she'd be able to get in everywhere we wanted to go.
And that we would go to the bowling alley after,
and there would be adaptive equipment for her.
And this wouldn't be a whole big, hey, let me call ahead.
Let me make sure.
It says accessible on the website,
but is it really accessible?
Is this going to be a seamless experience
where somebody could get in the door, get up to a table,
do whatever the activity is, get into the restroom,
use the restroom, that if there's a lift,
that the lift is in good working condition, great.
That was the idea, that everybody has word races,
that there's entry areas for anyone,
regardless of what their ability is, not just people
who walk on two feet.
So that's where we started.
And we've come, I will say, a long way.
I cautiously say that because there's such a long way to go.
And I know you know that, Brunjan,
because in order to sort of evangelism for inclusion,
so to speak, if you've heard the word of inclusion
and what that means, and you can wrap your brain around it,
then you already sort of drank the Kool-Aid,
and you can do it.
But the idea is to tell as many people as possible
and get people to have these aha moments,
have these recognition moments where they say,
oh, oh, I never thought of that.
And truly, we don't live in a society, I believe,
that wants to exclude people with disabilities.
It's just unless you have a disability
or are personally affected by it or know somebody who is,
someone you care about, a friend or a family,
you're really not necessarily gonna think about
a lot of these things.
And so that's where my organization comes into play,
where we have conversations like the one I'm having with you.
We talk about some of the issues and use examples,
but we do what we call demonstration projects.
And always being careful not to exploit people
with disabilities, but to tell stories
and have people with disabilities
tell stories from their perspective
so that other people understand what it's like,
because it may be the first time you've heard about something
and it could be the millionth time
that a person with a disability
has had to deal with something.
And so having allyship, being upstanders,
having appreciation for a path that somebody's traveling
that may be new to them or may be old to them
that we as a community can come together
and make sure we're clearing obstacles,
whether those are physical barriers
or just thought barriers,
things that get in the way of us recognizing,
oh, this person can't do this if we don't do X, Y or Z.
And that's what the Play Brigade has, excuse me,
that is what the Play Brigade has morphed into
or evolved into over time.
No longer are we an organization that just says,
we're gonna put accessible equipment in playgrounds.
Yeah, that's where we started.
But the pandemic showed us something pretty important.
And that is there was a time where nobody was going out
having fun.
We weren't going to restaurants and bowling alleys.
We weren't looking for things to do.
We were inside and the population
that I'm most familiar with right now,
which is my daughter's population of people
that have more severe disabilities,
we're dealing with other things like housing,
like education and healthcare equity issues.
And I'll talk a little bit about those three things
when you give me an opportunity to do that.
But what we've done with the Play Brigade
is we probably do 25% focus now on Play Rec and sports.
And then the 75% is on those things that I just mentioned.
And I can give you specific examples later on
that will help showcase or demonstrate what that is,
how it's different, what needs to change in
and the strategies that we use to create that change.
And I think that's the important thing
that I hope to leave, take a reader.
That's the important thing I hope
to leave listeners with today.
How can you do this in your own community,
even without any experience?
What do you do?
Where do you go?
What is conceptually the process of making change
in your community in any number of areas?
Yeah, well, I want to get to that 75%.
There's a lot to unpack there.
So you had mentioned, no, just like as you spoke,
there were a lot of things that came to my mind
and you mentioned demonstrating and sharing people's stories.
That's one thing that I've always struggled with
at my gym.
It almost seems like, oh, look at me,
I'm supporting people with disabilities.
And whenever I post a client with a disability training,
I get all the comments
and half the time they're directed at me.
I'm like, no, I'm like, no,
I'm not looking for you to praise me
for the work that I'm doing.
I'm looking for you to recognize the ability
that this person has so it can kind of reframe
your expectation for disabilities.
How do you think, how do you promote inclusion
without exploiting?
That is a really important question.
And the answer is it depends on the situation
and it depends on the person
and the person's comfort level.
There certainly are plenty of examples of,
you may have heard,
I know that you have heard about inspiration porn
and inspiration porn is when you have a feel good story
that showcases a person with a disability
doing something ordinary that seems extraordinary.
For example, we see a lot of clips on Instagram
of people with mobility disabilities
crossing the finish line of a marathon
and it took them many, many hours to do it
and the community is surrounding them
and everybody goes away with a feel good feeling.
That can be perceived as positive
and it can be perceived as negative.
And I think that it's tricky,
I can't speak for everybody in the disability world
but I can speak for myself.
I am a person with a disability
and you can't tell by looking at me
but I have hearing aids, I wear bilateral hearing aids
and so I sometimes need to sit close in a theater
or need to have captioning on and Zoom calls
or things like that.
But in my everyday existence,
I don't feel discrimination or exploitation
because of my disability.
But my daughter does have and will continue to do that
and so it's important to make sure that
if you're working closely with somebody with a disability
and you're trying to be an upstander,
that you always make sure that you talk to the person
if that person has the cognitive ability to consent
and to articulate what they want,
if not them then their guardian
and what's in their best interest.
And explain what you're doing
and see how the person feels about that.
And if you're not getting consent
and you're not getting wholehearted agreement on something,
then it's time to pause and say,
well maybe I shouldn't be doing this.
We did have a tough situation once
where we had somebody with a visual disability,
a vision disability who was legally blind,
who was running the Boston Marathon
and his two guide runners at the time were,
it appeared to be more self-serving that they were guides,
really self-promoting they were guides.
It was, they were doing things with their business
that was things that were,
to me I wouldn't have made that call,
like doing things that would drive people to their business,
like look at us, look what we're doing.
And so we ended up,
that ended up not being the direction
that this runner went.
And in terms of guide runners,
it's not always gonna be that clear
because on the one hand you have somebody
who's in the helping role,
on the other hand you have,
well they're using the story for gain or self-promotion.
If it feels wrong, generally it's not good.
And so for me, I spoke to the person
who they were guiding and got input from the family
and we landed in this isn't the right fit
and this isn't the way we wanna do this.
We were fortunate to get some really good media
that really focused on the runner.
And that's what we wanna do.
The runner, what the runner feels is important
and what that runner felt was important
was not the business of the two guides
that were running with him,
but getting him across the finish line,
supporting him and getting across the finish line
because he was the focus,
not the people who are serving in a support
and empowerment role.
At least that's my off the cuff opinion.
If you ask 10 people that question,
they're all gonna answer you a little bit differently
and I just always leave space for the voice
of the person with a disability.
What are they okay with?
And also recognizing that there's the cause
and then there's the situation.
And in the situation,
you might just wanna deal with this situation
not be a megaphone for the cause.
And while I like it when people are the megaphone
for the cause, excuse me,
I've certainly been told no.
In fact, if we have a minute,
I'll tell you a little bit about the first time I had
to ask somebody with a disability to participate
in something that would be the megaphone for the cause.
Is this a good time for that?
Okay.
So some people know this story.
In the beginning, when I first started doing this work,
about maybe four years into it,
we're almost 10 years old now,
I was invited to participate in a fundraiser
for the Play Brigade.
So that's something that would give our organization money
that we would be able to use to buy equipment
or do programming that people with disabilities need
and want.
And I thought, oh great, great opportunity
to do this fundraiser.
The fundraiser was a dance competition.
I am a terrible dancer,
but I agreed to do it for the cause.
And they paired me with a choreographer
and I showed up at the dance studio one day
and it was really nagging me.
It was really bugging me.
I thought, what am I doing here?
I'm doing a dance competition.
It's totally unrelated to anything except it's recreation.
What does that have to do with inclusion?
And I thought, oh, wait a minute.
We're all about showcasing what true community inclusion is
and helping people understand and see what it is,
see what that means.
And so in this case, when my choreographer said to me,
have you thought about what you wanna do for a dance?
I immediately said yes.
And he said, well, tell me.
And I said, I don't wanna dance with you.
And he was taken aback, maybe even slightly offended.
And I said, let me explain this.
This organization is dedicated to the inclusion
of people with disabilities and play recreation sports.
What kind of role model am I if I get on the stage
and do what's predictable?
That people who ambulate on two feet expect,
they expect to see two people dancing together.
People with disabilities can dance.
I would like to find somebody as a dance partner
who has a disability to help me showcase what this means
and make people feel something.
And so I looked everywhere for somebody
that I could dance with, knowing that it was awkward,
knowing that this could be exploitative,
my organization is going to benefit from this
and so that we could do things,
but also we would be able to be fulfilling our mission
by showcasing what this is.
So it was really a struggle for me for a little while.
And it's also awkward and embarrassing
just picking a random person that I don't know
and saying, hey, would you like to dance with me?
And how does that make them feel?
So there's a lot of thinking that I went through
and I really was discouraged for a while.
It took me about three weeks before I found a partner
and I only asked three people.
One person I didn't have the guts to say,
hey, would you do it with me?
Instead I said, do you know anybody?
And I was just really kind of hinting around it
and I was getting the vibe that he wasn't gonna do it
with me.
So then I asked just a random guy on the Boston Common
and he shot me down because he said he was from Colorado
and I, oh, that's not gonna work.
And then I left and I was supposed to be scheduled
for a phone call with somebody, like a work call.
And I actually called her and said, you know what?
Can we postpone this a half an hour?
I've got some unfinished business.
And I got my courage up and I went back to where I was.
And by the way, it was the anniversary of ADA,
the Americans with Disabilities Act on the Boston Common.
It was a big celebration.
I thought if I'm gonna find a dance partner,
it's gonna be here in this space
that I'll find this person today.
I just really, it was new to me.
It was awkward, it was uncomfortable.
But I just said, okay, you can do this.
I went back and I just sort of did a scan of the field
and I saw a guy with a really cool adaptive bike
attached to the front of his wheelchair
and I thought, that's my guy.
And I went right towards him and you know, okay,
he's sporty, this is gonna happen.
And I asked him if he was a sporty guy
and he said, I consider myself a sporty guy.
And I said, well, this is my situation.
I've been looking for this dance partner.
I run this organization about inclusion
of people with disabilities.
And you know, I would love it if you would be willing
to dance with me for this competition.
Is that something you'd be willing to do?
And I was pretty direct and he said,
to be honest with you, I'm not really comfortable with that.
And I had to respect that.
And I sighed, which he would later tell me
when we talked about this.
My shoulders dropped.
I took a step back and I dropped my chin,
almost to my chest, like really defeated
and I didn't even realize I had done that.
He later recounted that to me.
And in that moment, I just said to him,
okay, well, I'm sorry.
I was apologetic and I said, I just really,
thinking about the idea of my daughter being left inside
while all of her friends are going out,
doing other things in the community is really just,
it really is devastating to me to have that thought.
And he looked at me and he said, I'll do it.
And I said, what?
He said, yeah, I'll do it, let's do it.
And I said, wait, do you wanna think about it?
He goes, I don't need to think about it, let's do it.
And I said, okay, we exchanged numbers
and I waited a few days to call him
because I thought if he's gonna change his mind,
I want him to change his mind now.
And when I called him, I said, hey, this is Dawn.
You know, we met and I just wanted to see
if you still might be interested.
And he said, I told you I'd do it,
I'm not gonna change my mind, let's do this.
Now, once I got to know him, we started dancing together.
We eventually went on to win the competition.
We got to know each other really well.
And in the process of getting to know each other,
what he revealed to me was that he had been
in his apartment alone for three months.
He was new in Boston and he didn't have a single friend.
And the only reason he went out is because he had gotten
a new adaptive hand cycle to attach to his wheelchair
and that it was the anniversary of ADA.
So he thought he'd get out there.
And when I spoke to him about my daughter,
I was really speaking to him about some feeling
that he was familiar with.
And so it was just that little poke
that brought both of us together in the most incredible way
because he's now, you know, really has recognized
his value in the community of people
that hadn't thought of him before, you know,
in the ways that he had experienced.
And now he understands through our organization,
through his participation, through going to our 5K,
running on our Boston Marathon team,
being in the dance competition,
he's got friends that just give him a call
to get together for breakfast.
He's got friends thinking about him
and throwing him a birthday party
and, you know, doing it in a place that works for him,
not just for them.
When people go out and they're like,
let's give him a call, they're factoring in that.
They're considering that.
And they're not just considering that with him.
Now they're considering it in other places
where they show up and they see, oh, there's a step here.
We can't go here with all of our friends.
So I also find that groups of people
who understand accessibility barriers
will make other decisions not to patronize a certain place,
if not everybody can get in,
which is a really interesting thing.
Not all the time, but it's a really interesting thing
that leads me to a really related issue
that we're seeing now, now that the pandemic has,
the public health emergency was declared over
and all of the restaurants have gone back
to sort of normal operating procedure.
What I've noticed was when the pandemic happened
and all of the, I'm talking about in Boston proper
and some surrounding areas,
we saw restaurants in particular starved for business.
So they were doing outdoor seating.
This outdoor seating mandated by the city of Boston
needed to be accessible.
So you're seeing restaurants put out ramps
at street level, sidewalk level,
using the street that usually is reserved
for parking spaces for cars.
Those cars weren't allowed to park there.
They would put platforms in that were flush
with the sidewalk so people with and without disabilities
were able to come to those restaurants
and enjoy dinner outside during COVID.
Now that went on for we know how long, right?
And then not too far long ago,
that public health emergency was over
and restaurants started resuming their normal activities.
What did we do at the Play Brigade?
We started watching and strategizing
how we could connect with city officials,
which is we've got a whole list of things to do, right?
And bandwidth, you have to prioritize
what's the most important, which we'll get to.
But on our list of projects,
we've been watching how many restaurants maintain
that outdoor seating because inadvertently,
we saw many, many, many restaurants
that people with disabilities could not previously get into.
They were able to get in.
They were able to try places they never would have been able
to try had the pandemic not occurred.
But what we're seeing now is that's being scaled back
and those places are no longer accessible.
Many of them are no longer accessible.
Pandemic's over, let's take that away.
But the way I see it, because I've been doing this
for almost 12 years now with my daughter,
the way I see it, that was a reasonable accommodation.
Wasn't overly burdensome to the business,
didn't fundamentally alter the way they did business.
Those are the two factors that make an accommodation
need to be granted under the Americans with Disabilities Act.
So I could theoretically go to any restaurant and say,
or go to the city of Boston and talk about,
well, let's have a conversation about
how we can raise the bar in our city.
Sure, Newberry Street, for example,
a lot of historic buildings, a lot of them grandfathered in
and they don't really have to be fully ADA compliant
unless they spend 30% or more of the full and fair value,
I might be saying that phrase wrong,
of the value of the building in construction and renovation.
Once they go over that 30%,
they must put in a lift or an elevator.
They must be wheelchair accessible.
So we see that since 1990,
a lot of those places on Newberry Street
where you have these brownstones that are only accessible
by going upstairs or by going downstairs,
have not done major modifications to the buildings
because it would require them to put in a lift
or an elevator.
But let's not talk about it.
That being the only way of getting into that store
or restaurant.
If you were being able to do business outside during COVID,
you've inadvertently provided a reasonable accommodation
to restaurant patrons who have disabilities.
So theoretically, we know that it didn't cause
an undue burden and the burden is measured
administratively or financially,
like what is the cost of doing this
versus the total revenue that your business brings in
and two, does it fundamentally alter the way you do business?
No, you're still serving food in a restaurant to people
as you've done it in the past.
So that's an opportunity that a regular citizen
may recognize, hey, wait a minute,
we are poised for positive change all over the place
because we know restaurants can do it.
We also know that people with disabilities
that don't often get catered to
because restaurants say, well, there's only a handful.
No, no, no, no, when I go to a restaurant,
I could have eight to 10 people with me.
I could go frequently or more frequently
to restaurants that accommodate us
and we're bringing in business
and we're telling our friends to come
and they're telling their friends to come
and the disability community, as you all know, is a network.
I know you through this network.
We all kind of can know each other
and get on the different social media pages
and share our information, including accolades
for how we are treated when we're out in public
with our friend or loved one with a disability.
So that just kind of gave you a long-winded access
into the way my brain works.
I'm always looking, I'm always thinking,
I'm always seeing ways to improve.
What stands between me right now saying that to you
and the city actually accommodating it?
That's a whole different story.
That's about telling the stories
and shifting power from a person responsible
for making a decision, which we'll get to.
Yeah, you talk about how accessibility
is good for business, obviously there.
The more accessible it is, the more patrons come in
and you refer to your friends and so on and so forth.
But I think people are still kind of stuck
in this reductionist, like I have to invest
X amount of money into this accessibility accommodation
and like, oh, no one has ever come
to my restaurant in a wheelchair.
And it's like, yeah, obviously,
because they can't get into your restaurant.
So it's like, you miss not only that specific consumer,
but everyone within their network as well.
And so that's what we kind of talk about,
how accessibility is good for business.
I think even on your website,
you talk about for Play Brigade,
how it's not just about specialized equipment.
Obviously physical accessibility is essential,
but that's another thing that when we work
with gym owners and stuff, we talk about,
I think they have this vision of like a spalding
with all these complex pieces of equipment
and they're like, oh, I can never do that.
That's way too expensive.
I don't have the space for that, et cetera.
But it's easy to show, like in my facility,
it looks like any other gym,
what you can do with the equipment is more important
than the complex adaptive equipment you have.
And so you talk about how inclusion's not fancy equipment.
It's a sense of belonging.
It's incorporating people with or without disability
seamlessly.
You also mentioned how some of your accessibility
advocacy work is maybe influenced by your daughter,
but you recognize that it's not for her specifically.
It's for all these other people.
So like, were you, was this on your radar
before Harper was born?
Well, I wanna be able to say no,
and I don't know why I'm saying yes,
but I'm gonna tell you a little story.
So prior to me having Harper, I was actually pregnant with,
I was pregnant with Harper at the time,
that the year was, I wanna say 2011.
It was maybe, I don't know, it was winter months.
And I was involved in a, I lived in a new development.
I lived in a condo that I thought
was gonna be my forever home.
I had really young twins that were born
while I was living in that condo.
I was the head of the condo association in my development.
It was a small development.
I think we had, I don't know, eight units or so.
And there was a building that was going up next door
that was going to be adjoining,
it was gonna be a joint condo association.
So there's construction going on.
And one day I was curious about the construction.
So I asked the developers, sort of secondhand,
right-hand man, whatever you call him.
I asked him if I could see the plans
for the building next door.
And what I saw was when I looked at the parking lot,
there were two designated wheelchair accessible vehicle
spots in the parking lot.
Now what I didn't know then, and what I know now,
is that parking lots are very,
there are very strict guidelines in Massachusetts
and overall what is required,
the type of slope for wheelchair accessible vehicles
and unloading, the type of safety striping
that a lot of people don't realize
if don't park on the stripes, by the way,
because that's for ramps to let down
and for people to navigate between vehicles
to transfer in and out of their cars,
not for cars to park to just run into CVS for a second.
Don't ever park on the stripes, you will be marked.
So what I found was there were two spots
in this parking lot that hadn't previously been marked,
but all of a sudden on these plans,
they're marked as wheelchair accessible spots.
And I thought, wait a minute,
and the only reason it caught my eye
was because one of those spots was deeded to me.
I bought the condo and I bought the parking spot.
And now this joint association is,
looks like they're commandeering my spot
for wheelchair accessible vehicle.
And I went, wait a minute, this isn't an accessible spot.
You guys are building a parking garage downstairs
under this building, the accessible spot
should be in the parking garage
in a covered location underneath.
The developer said, oh well, we can't
because we're not building the height of the parking garage
won't be the grade that we, by code.
They were deliberately building not to code.
Again, we see expenses, we see people cutting corners,
hoping that they won't get caught
because they think they assume it's gonna be more expensive
or maybe it is going to be more expensive.
And they think, well, we're not gonna really need
the height clearance to be that high.
So what they did was they shortchanged somebody
who needed access to a heated covered area,
safe from the elements.
And they decided to just tack it onto my spot
that I already own and they had no right doing.
So naturally I had to say something about it.
I said, yeah, no, you can't, you have to put it down there.
The job ended up getting shut down
because I called the building department.
I said, hey, they're not building the garage to code
and they're taking over my spot.
And the guy next to me who also happened to be
on the board of trustees and was an attorney
and they wouldn't change anything, it got shut down.
Then because it was Thanksgiving,
they didn't want the construction workers
to not have a job.
So they let them continue building this out of code,
brand new construction that was not gonna allow
for wheelchair accessible vehicles
with the height requirement by law.
And the conversation turned into a negotiation
on how could we make these two outdoor spots accessible
and make them the closest accessible entrance to the door.
The whole thing was a disaster.
It led to me filing a complaint
with the Massachusetts architectural access board.
I showed up and successfully argued with,
when Tom was still alive and the whole board argued
on behalf of people with disabilities,
if they should need a parking spot,
they're going to need a covered accessible spot.
And this is not the right situation.
And what we negotiated,
we actually did sort of a mediation negotiation there
where we negotiated moving the two exterior spots
somewhere else.
So my spot and somebody else's spot,
the guy next to me moved out of the parking,
out of those spots.
And they built an independent garage,
an additional garage over those two wheelchair
accessible spots with the appropriate striping
and space between the vehicles and all that.
And then they did a covered walkway to the door,
which was a terrific negotiation.
It should have been that you have developers
that realize the impact on people with disabilities
if they cut corners and try to get away with
building a building that's lower than what's required by law.
But the truth of the matter is a lot of people
don't think about this code until last.
They think, well, no one's going to notice that.
But then you have a lot of people now
are starting to be testers.
They're starting to go around and say, look,
this isn't right and start to report things.
There's a guy right now that's filed over a thousand requests
in the past six months with the architectural access board
on random things, just things that are not compliant,
but just pretty random.
I tend to choose things that have that maximize impact,
like the Children's Hospital parking garage, for example.
They had 20 something spots.
I think it was 23 spots.
They were going to add another deck to their parking garage.
We negotiated for about two years
what should the real number of spots be?
I said 68 or 69 spots, 10% of the total spots
that would be there according to state law,
the access board guidelines, Children's Hospital,
recognizing that some of these spots
would be empty sometimes and that's lost revenue,
presumably wanted 10% or 2% of the spots.
So there was this big back and forth, back and forth.
And finally, they, without talking to me
and a representative from the Boston Center
for Independent Living, who had been successfully,
to that point we thought, advocating for what needed
to change in the parking garage
when they were doing construction and re-striping,
it became another complaint filed with the architectural,
no, I'm sorry, it wasn't that.
It was, what it became was the Children's Hospital
requested a variance without letting us know.
They were requesting to be exempt
from all the wheelchair accessible spots.
And I thought, that's not right
because wheelchair accessible spots,
now that height variance is for transport vans
that are high, like the ride and things that you see
around Boston that are like a Amazon delivery truck style
and other ambulance style vehicles.
And that's, at least that's my understanding.
But the reality is most people who would park
in Children's Hospital parking garage
are going to be using minivans.
And minivans do fit the height requirement.
So rather than Children's Hospital saying,
hey, we want permission because this garage
was built a long time ago
and we can't meet the height requirement.
We don't wanna have to have any van accessible spots
at all because we can't, we just can't fit them.
I showed up as the sole opponent with a representative
from the Boston Center for Independent Living
supporting my testimony with a follow-up letter
stating why the logic was flawed
and why it was critical that we have
the correct number of spots.
It's a medical facility, there's people with disabilities
coming and going, you can't measure it based on
floor area, et cetera, et cetera.
And two weeks later, I get a letter in the mail
could have been a little bit longer than that saying,
here's our decision and the access board
decided in our favor and there are now 68 or 69 spots
representing about 20% of the garage
that are wheelchair accessible spots.
And they had to include the wheelchair, excuse me,
the van accessible spots that they were trying
to get out of and they were trying to not have to do
the van accessible spots and they were required
to do everything except the height clearance
on the type of signage.
So another example of just speak up,
you think you're too small to make a difference,
try being in bed with a mosquito,
you just have to be persistent, you have to be kind,
you have to make compelling arguments that are reasonable
and do it with professionalism and in a way that
the people on the other side of the table
understand the perspective or can empathize
with the perspective of what are the challenges
when someone who has a wheelchair accessible van
or who has an HP placard with maybe a child with autism
who runs a lot and you have to chase a child down
in an active parking lot because you can't get a spot
close to the door in an HP spot
because there aren't enough.
Yeah, it's tough to like when you hear an organization
like Children's that serves so many people with disabilities
being like not super compliant,
it's hard to assume that every business,
if you can't even get the ones that should have
the bandwidth and the understanding to comply,
how are you gonna get all these businesses started
by people who have no experience with disability,
no understanding, no perspective towards it,
how are you gonna get them to comply?
Like digital accessibility is something we've been
looking at a lot recently and I see it kind of,
it's almost like an echo chamber on LinkedIn
where like all these digital accessibility specialists
are griping about overlays, et cetera,
and it's all very well warranted,
but it's like they're just speaking amongst themselves
and I don't know if they're really reaching
the key stakeholders that are gonna have any influence,
but then I read like all the federal government websites
aren't even digitally accessible.
If the government websites can't be digitally accessible,
how are you gonna expect me with a one person team
running a gym to comply with everything
and I have no background in coding, et cetera?
So it does seem like there, you mentioned earlier,
there's such a long way to go.
The advocacy stuff is obviously essential.
Your work in the school that Harper was initially
attempting to go to, Park School versus Dexter Southfield,
what were like kind of key takeaways from that
maybe without having completely stress you out about it?
You've got a kid who would otherwise,
kid with mobility disability entirely,
who would otherwise be qualified to go to a private school
or an independent school as they call them here
and because of her disability, the school did not want her
and so we went back nicely asked a few times
and they just really made it difficult.
They made it very clear they did not want her.
Usually it's fear, sometimes they're worried about cost,
worried about opening the flood gates to other candidates
who would not otherwise be qualified.
That ended up being taken on by the Department of Justice.
The US Attorney's Office opened an investigation into it.
That investigation was a year long.
They concluded that the Park School did in fact discriminate
against a person with a disability.
They created a process that tends to rule out
candidates with disabilities.
They did not give her a fair shake at the admissions process
and there was a settlement agreement that they had to do
with the Department of Justice.
So the takeaway there was what I wanted to do
by going and doing my media tour that I did in concert
with what was happening with the DOJ
was I wanted people to understand
and there were a few different audiences I wanted to get to.
One is I wanted Park School to understand
and be an example for other independent schools
who were participating in discriminatory practices
like Park had.
I wanted them to know what their responsibilities are
under ADA and what their board and their faculty and staff
is responsible for in the admissions process.
And besides that, I wanted people all over the place
to be able to learn from that mistake.
That you can't just say you're too disabled to go here
or imply that by your admissions practices.
I wanted to make sure that parents understood this,
that they have rights as well and that they can apply
for a school for their child with disabilities
and that there are certain things that are required under law
that just because you're a quote private school
doesn't mean you don't have to comply with ADA.
It's a very big misunderstood thing.
If it's private, you're not above the law
of any place that the public can enter.
It's a consider a place of public accommodation.
You're bound by ADA unless you're a religious institution
or a private club, okay?
But a school where people go, you are required
to follow the same laws as if it were in a public school.
And that message was really important.
And then the last message that was important was that
there are people with disabilities
that don't have to stay in public schools
just because they might be eligible for an IEP
or a special services.
They can go to any school of their choice
if they're otherwise qualified to do so.
If not for the disability, would they be able to be
a candidate for that school and find success in that school
with the appropriate tools and supports?
And the answer to that, if it's yes, is I say apply.
Don't think just because you have a disability
that you're stuck in the public school system.
And in my case, it was really easy to see.
I had two siblings that were over at Park School.
And then my other daughter, we just assumed,
oh, my husband went there and everybody's gonna be at Park.
No, Park didn't want that.
So we took everybody out and we went to Dexter Southfield
and she enjoys all the rights and privileges
that any other person who ambulates on two feet enjoys.
And that's the takeaway.
Yeah, absolutely.
And then recently you've been working on
the apartment complex in Boston.
Is it in Mattapan?
No, it's actually in the south end of Boston.
Okay, with the broken elevator.
Yep.
So this is the deal.
The friend that I told you about happens
to live in that building.
So I have visited many times since 2016.
And in the process of visiting,
I've noticed that the elevator breaks down a lot.
And I've made plans with him a lot that have been broken.
Concerts that we've paid lots of money for the tickets.
He can't get out of his apartment.
He couldn't get in to watch the Super Bowl once.
He was trapped outside in the snow.
And I'm thinking, wow, this is a process issue.
And this is a code issue.
So when residents with disabilities are trapped
inside a building or trapped outside of the building,
it's just, there's no excuse for that.
Massachusetts Architectural Access Board,
there's code that says that any accessibility feature
must be in good working order at all times.
And elevators in particular have to stop at every floor.
That's not the case, they're out of compliance.
So that's a point where about two years ago,
I just started saying, I'm gonna just keep track of all this.
And every single time the elevator breaks down
that I'm aware of,
I get to know a lot of residents in the building
and I'm a disability advocate for many of them.
I'm gonna start teaching people what to do
when it breaks down so that there's a paper trail,
that it's well documented, how frequently it breaks down,
what their experience was as a user, as a tenant there,
how quickly it was remedied,
and how long is this lasting before we get a real fix.
And what that led to was last summer,
last summer this elevator broke down
eight out of 10 days, it was out of service.
It was up, it was down, it was up, it was down,
it was not reliable.
So fourth of July weekend,
people who would ordinarily be doing their barbecues,
going to the beach, whatever, couldn't do any of that
because they were afraid to leave their home.
They were afraid they would be trapped outside
and not be able to find an accessible public restroom.
It was a disaster.
At that point, it was go time.
That was when I said, okay, we are going to file a complaint
with the Massachusetts Architectural Access Board
because we had been talking to property management,
filing work orders, trying to get the appropriate upgrades
for a really long time.
And then finally, just get that sense of timing.
And for me, it's sort of intuitive of when it's go time.
I always collaborate as best as whoever's on the other side
of the table will participate in.
I always approach it in a friendly manner.
I always approach it with empathy
and I always approach it from a,
hey, let's do this constructively together
so that it doesn't need to escalate.
And I never threaten escalation or anything like that.
I just say, let's just, I think we can work this out.
Great.
If it's over and over and over again
and you know that it's just not going anywhere,
that's when I say, okay,
it's time to file a formal complaint.
I file the complaint
with the Massachusetts Architectural Access Board.
It can be anybody.
It could be a friend, it could be a neighbor,
it could be a stranger who files that complaint.
It did not have to be a resident of that building.
So I filed the complaint.
I cited two parts of the code that were out of compliance.
And in this case, I would say to listeners,
you don't even need to know the code.
You just say the elevator repeatedly breaks down.
It's been six weeks, it's broken down 17 times.
It can be in layman's terms, that's fine.
I happen to know the code.
I filed my complaint.
The Boston Housing Authority had an opportunity
to reply to the complaint.
They were the property managers.
They replied to the access board
that they were working on it,
but it wasn't a real plan.
They were supposed to give a plan
to get back in compliance.
And there were some things that were in that response
that were false, and I knew they were false.
So I began a dialogue with the access board,
and I was providing rebuttal statements,
emails, supporting information,
so that the access board,
when it came time to go to hearing,
which it did advance to hearing,
because their response wasn't appropriate,
it wasn't acceptable to the access board,
and convincing enough that it was going to be in compliance
with what they were proposing to do.
At the time of the complaint,
we also had media fired up,
and we had some really great allies in the media.
If you tell media that you have 12 people
stranded in a building in public housing,
this is a BIPOC community,
this is a community that is at risk,
medically at risk of food insecurity, at risk.
There's a lot of potential red flags here,
and when you talk to the media about people being trapped,
and in this case, it really felt like they were caged in,
they were imprisoned in their apartments,
that's something that the media cares about.
And so that created a lot of noise.
At last count, there were 35 media hits
on this building all over, internet, newspaper,
it was in the Boston Globe,
once the Boston Globe picks it up,
local dailies pick it up, things move,
and we don't take it back,
and this ended up national,
and we had People Magazine had it on their website as well.
And so that created the noise that allowed us to do
what I had alluded to earlier,
which is what is the process?
The process is identify a person in power,
and then you identify who are my people,
and in this case, my people are people with disabilities
living in this building with a broken elevator
that's extremely old.
What would need to change
in order for this problem to be fixed?
In my opinion, the elevator would need modernization
so that it could be brought up to code and be reliable,
so that people in this building could enjoy quality of life
like everyone else and be able to freely enter
and exit their home whenever they choose,
not just when the elevator is available.
And so what we did was we created a strategic plan
to get there.
We wanted to shift the power from Kenzie Bach,
the head of the Boston Housing Authority.
We identified her as the ultimate decision maker.
We also knew that she had been in the position
for three months.
We have plenty of media coverage now.
She knows about this, and she's in charge.
She has the ability to make choices and decisions
to help us fix this.
And so what we did was our target was
create an opportunity for the people in the building
to tell their stories in their own words to the media
in two to three minutes.
And so we can allow those stories to become a bigger story.
And in the process, they've grown their power
and they've shifted power from the BHA,
Kenzie Bach in particular, to them.
And that's what this is about.
You do it kindly, but then when you can't,
it's about identifying, well, who is the decision maker?
Who's the person in power?
And how are we gonna have these people learn
how to tell their own stories with their own voice
in a way that if we do media,
plus an access board complaint, plus a hearing,
this is going to lead to modernization of the elevator.
So I bet you're wondering where this landed.
The access board has taken it under advisement,
which they're going to review all of the materials.
People were allowed to, they extended the window
of submitting supporting documentation.
I did show up, I testified,
I thought my testimony was sound.
I will add that the attorney
for the Boston Housing Authority did something
that was really kind of a great example
of what not to do if you wanna have an inclusive mindset.
And that is once I did my, once I led with the testimony
and was representing as a disability advocate
the entire building, the attorney,
instead of counter pointing whatever I said,
decided to attack my credibility
and attack the fact that I was not a person
with a disability and I didn't live in the building.
So therefore, who am I and why am I testifying?
And this is a bunch of garbage if nobody at this address
is even showing up to testify.
Don't do that.
Because you're just gonna look like a fool.
You're gonna look closed minded.
One, never make assumptions about people's disabilities.
Like I told you earlier, you're never gonna look at me
and think she has a disability.
Two, don't think just because somebody lives in the building,
they don't have any business or doesn't live in the building
that they don't have any business in the building.
As I mentioned earlier, I go to that building all the time.
I'm a person in the public that comes in.
So does the Amazon driver.
So does the mail carrier.
So do friends and family.
Friends and family could have disabilities.
The elderly live in that building.
When the elevator's down, it affects a lot more people
than just the 12 people who were trapped in their building.
Getting prescriptions delivered.
Amazon drops it down at the bottom of the stairs.
How is that gonna help?
If the elevator's down for 15 days,
they're not gonna find six flights of stairs
to bring you your pills, right?
Second, the credibility of anybody isn't that important
in terms of who you are and what your role is.
It just matters that you were affected by it.
So it didn't matter that I wasn't an attorney.
And that's what she was trying to say.
Oh, well, you're not an attorney, right, Don?
And I said, no, I'm not an attorney.
I'm a disability advocate.
And I'm representing the people of this address,
just like you're representing the Boston Housing Authority.
I'm authorized to speak on their behalf just as you are.
But that wasn't enough.
She said, but you're not an attorney, right?
I said, no, I'm not an attorney.
But I did study at Harvard Law School, disability law.
I took some classes as part of a master's program there.
I didn't go into all the details.
But I said, no, but I do have a credential.
I did study disability law in particular.
Would you like me to go further into that?
And she shut it down really quickly.
It doesn't matter.
I could have not gone to college.
I may not have graduated from high school.
The fact of the matter is being an upstander
isn't about who you are, what experience you have.
It's just about noticing that there's a problem
and taking active steps to solve it.
And there are many ways to solve these problems.
It doesn't have to be the strategy that I outlined.
That's just one that I've done many times in the past.
And I know that it works.
And it allows me to pivot and shift strategies
if it's getting better or if it's getting worse.
You can turn on different levels of juice if you need to.
And that's, I think, part of the reason
that I've been able to be effective as an advocate.
Because this is not angry.
This is just how do we get to what would solve
the problem of my people?
That's one thing I have a little bit of trouble with
is I never intend to speak on behalf
of people with disabilities.
And it's sometimes I see so much like,
oh, lived experience is essential.
Lived experience, and I don't have that lived experience.
But I also don't see anyone else opening a gym
or doing the leg work that I've done.
So it's like, I feel qualified in that regard.
And I feel unqualified in other areas.
So how do you think people can be advocates or allies
without maybe that lived experience
or without a family member with a disability
and maybe on a smaller scale
than the projects that you're taking on?
What can people do to kind of promote
more inclusive and accessible communities?
That's a great question as we wind down our time
because it brings us back to full circle
how I started the Play Brigade.
I was exhausted, I was overwhelmed,
I didn't know what I was doing.
I hired a child life specialist,
a person to come in and help me with Harper,
help her get out into the community.
And I asked her one question.
I said, before the end of the day,
can you please call somebody down the street?
There's a playground down the street.
Can you please call, find out who the person
is in charge of that and see if we can get
an accessible swing?
And she said, okay, no problem.
Then I had my first break that I had in a long time.
She hung out with Harper for a few hours.
At the end of the day, she came back to me and said,
by the way, I called the Department of Parks and Open Space
for the town.
I explained the situation.
She said, okay, great, we'll put a swing there.
And by the way, we're gonna be renovating
that playground anyway,
but we'll get a swing there right away.
And I went, wow, and that was my opening?
That's when I went, I didn't ask for enough.
There could be more, I wanna get involved
in this playground renovation.
And that's where the Play Brigade came from, that moment.
But did my child life specialist know anybody?
Did she know anything?
Was she disabled herself?
Absolutely not.
She just was a regular person saying,
I'm gonna just go down the street, I'm an average Joe,
and I'm just gonna figure it out, right?
We have to figure it out.
And if you're compelled to figure it out,
and you can do something to be an upstander or be an ally,
I think it's important.
Don't be fooled into thinking you need some,
you need to be a part of the community.
A friend of mine said something to me once.
We were in a restaurant and he said,
we should leave soon, I have to use the bathroom,
and there's a bunch of stuff piled against the door,
and they're using it as a storage room.
And I said, well, why don't we say something?
And he's like, you know what, for you, it's the first time,
for me, it's the 100th time,
I just don't wanna deal with that.
Okay, that sells me something.
You've been doing this years and years.
If you're a person with a disability doing this
for 20 years, you're not gonna be as excited to speak up
and say they have the same conversation over and over again.
That's like spouses who don't close the back doors,
wink, wink, I'm having this conversation.
It gets frustrating, these little things
become big things, right?
And so to that I say, allyship is needed.
If somebody's listening to this podcast
and they think they're not the one, guess what?
They are the one.
If you notice it, you're the one.
If you hear a friend or a person that you know
with a disability mentioning something that's an issue,
you are the one, right?
If it's in your heart.
It doesn't have to come out smoothly.
You don't have to succeed the first time.
Just keep pushing at it.
Think about it as if it were you
and you wanted to remove an obstacle.
There's a way to solve problems.
There's a lot of ways to solve a lot of different problems.
And I'm asking that the community get creative
in finding these moments and moving on these moments
because with every single project
that I embark on with the Play Brigade,
like you said in the beginning, it is not for Harper,
but ultimately it affects the community
that Harper, my daughter, is in.
And it sends a ripple.
It makes a ripple effect that other people notice it.
I could have built a swing set in my backyard, Brendan.
I didn't do that.
I chose a public playground, right?
I could have kept it quiet and private
like a lot of people who go into private schools do.
It stigmatizes.
It's like, oh, I don't want people to know.
But instead I blew it up
and made sure that everybody knew, right?
And the architectural access board, that's a public hearing.
And we didn't need media at the access board.
We needed media in the building
to tell the story of the people.
We could have just not done the media
and gone right to Kenzie Bach.
But at this point we had asked and asked and asked
and it wasn't going anywhere.
So we need to set an example.
And guess what happened?
Many, many, many, many complaints were filed for elevators
with the Massachusetts architectural access board
after they saw people in the media.
And then other people were taking action.
And the access board was like, oh my gosh,
we have so many elevators on the way right now.
All at once.
Well, how do you think that happened?
And what do you think happens
when someone gets notification
that they're the landlord of a building
or an owner of a building and their elevator's not working
and the state access board reaches out to you and says,
you know what, you gotta respond.
How are you gonna get this compliant?
And if it's not acceptable,
you're gonna have to come to a hearing and we could find you
every single day until you make it compliant.
Well, that creates action.
We don't want to be like that.
There's a lot of good takeaways there across industries too.
It's not just specific to landlord
and building ownership and commercial real estate.
It's really applicable to everything.
So I feel like we could have talked for hours.
I had a bunch of topics
that I could have covered or wanted to cover,
but this was perfect.
I think it's different
because a lot of the conversations we have
are more fitness and sport related,
but I think this is an essential piece
because I ask all the guests,
what do you think has to be done
to make fitness environments more accessible?
I think we touched upon that indirectly
in a lot of the stories that you shared.
So hopefully listeners find takeaways there
and are able to apply them.
Yeah, I think so.
And I guess one thing I will say to that is
people need to be included across all aspects of life.
When you think about what your day looks like in the morning,
you may wake up, get out of bed, go to the bathroom.
You're in a home.
You're in a home that's accessible to you
that you can open and close the doors.
It's a space that's appropriate.
You've got heat, you've got hot water.
Then maybe you go out and you go work out
and you go to the gym.
Then you go get some food.
Then you go to your job.
That's a whole area that we've never touched on,
but that's huge right now.
Only 20% of people with disabilities,
that's a high number, a high estimate employed right now.
So you gotta think about it as this is a continuum.
You can't just fix something in one area.
You have to make sure that the community,
that this world that we're in,
that people with disabilities
feel like they belong there too.
We are a community that values diversity
and disability is part of the diversity conversation.
We do a lot of paying attention
to a lot of very deserving populations
who are underserved, but the disability community,
because it takes so many faces,
it's difficult to just really focus in one way.
We really need to do a lot more speaking up
and helping people take notice of things everywhere.
Now, look at your gym, look at your place of business.
If you're a listener, take away from this, wow.
If I'm a store, is there a spot
where somebody with a disability
who maybe is a wheelchair user can roll up to the counter
and not have to reach up really high to get their muffin
or sign their credit card check?
Maybe there's a side table dedicated to that.
How is my furniture in my waiting area set up?
Is there a space that somebody can use if they need to,
if they need to park a wheelchair there?
You know, what things can you take away
when you finish listening to this podcast
and think about what is the world that you're in right now?
How would it be different if you were a wheelchair user?
How would you get through your entire day?
And just kind of mull that over
and chew on that for a little bit.
And I guarantee that listeners will come up
with at least one or two ideas that they could do,
whether it's rearranging furniture
or making the door that you're opening less heavy
by making that adjustment at the top arm there
so that a wheelchair user can grab it
and open the door easily.
There's a lot of work that still needs to be done.
Yeah, that's kind of a thought experiment
that we do for races and environments and activities.
Like if you can't see, can you access?
If you can't hear, can they access?
Like if you can't, if they're in a wheelchair,
can they access?
So that's just like an easy, easy way to put yourself
in those positions and make sure
that you have access points through all that.
If someone wants to support the Play Brigade,
either fiscally or in the programs and services
that you provide, what's the best way for them to do so?
That's a great question.
Thanks for asking.
So if you go to playbrigade.com
and just visit our website,
you'll see the donation button right on the website.
And every year we have a Boston Marathon fundraiser,
which is happening several months out of the year,
but you can just donate to the general fund
and that allows us to do the work that we do every day.
Awesome.
Boston Marathon, you guys have a few bibs this year as well,
right?
We've got six runners and we also have an athlete
with a visual disability.
So she's going to be accompanied by one or two guide runners
who are training with her right now.
She also ran the Play Brigade 5K.
So I met her back in 2016
when we first launched our racing program.
Yeah, yeah, awesome.
Yeah, that's great.
So playbrigade.com.
Dawn, thanks for having those conversations.
I had a hard performing.
Of course I will.
Thanks for having me on and call me anytime.
Thank you for listening to the AdaptX podcast.
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Until next Monday.