Taking Action and Advocating for a More Accessible World with Dawn Oates
In this conversation, Dawn Oates discusses her work with the Play Brigade and her advocacy for inclusion and accessibility. She shares her experiences in promoting inclusion without exploitation and her advocacy work in education and housing, emphasizing the rights of individuals with disabilities to access quality education and safe living spaces. Dawn highlights the ripple effect of advocacy and the impact it can have on creating inclusive and accessible environments. She encourages listeners to think about how they can make a difference in their own communities and support organizations like the Play Brigade.
Episode Twenty Seven: Key Takeaways
Promote inclusion without exploiting individuals with disabilities, ensuring their consent and involvement in advocacy efforts.
Representation and storytelling are powerful tools for raising awareness and promoting understanding of disability issues.
Businesses should prioritize accessibility to attract a wider customer base and create a sense of belonging for individuals with disabilities.
Advocacy efforts should focus on addressing accessibility barriers in education and housing to ensure equal opportunities for individuals with disabilities. Advocacy involves identifying decision-makers and empowering individuals to tell their own stories.
Being an ally and advocate does not require lived experience or a specific role; it is about noticing problems and taking active steps to solve them.
Advocacy can create a ripple effect, inspiring others to take action and leading to systemic change.
Promoting inclusive and accessible environments requires considering the needs of individuals with disabilities in all aspects of life.
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Episode 27 Transcript
Brendan (0:00)
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 Don Oates. Thanks for joining me today.
Dawn Oates (00:51)
Yeah, my pleasure.
(00:53)
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.
(01:04)
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 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 all together, 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, but 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, Brendan, if you and I were gonna 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 work good working condition, great. That was the idea that everybody has road races, that there's you know um 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 but there's I cautiously say that because there's such a long way to go.
And I know you know that, Brendan, 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, 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, but 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, were dealing with other things like housing, like education and health care 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.
(06:41)
Yeah.
(06:47)
And the strategies that we use to create that change. And I think that's the important thing that I hope to leave, 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?
(07:10)
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 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?
(07:39)
Yeah. Absolutely. 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.
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. 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 in 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...
(11:48)
Yeah.
(12:09)
They might just want to 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.
(12:34)
Yeah. Yeah, absolutely.
(12:38)
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 its 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 want to do for a dance? I immediately said yes. And he said, well, tell me. And I said, I don't want to dance with you. And he was taken aback, maybe even slightly offended. And I said, let me explain this.
(14:00)
Mm-hmm.
(14:02)
This organization is dedicated to the inclusion of people with disabilities in play, recreation, and sports. What kind of role model am I if I get on the stage and do what's predictable? People who ambulate on two feet 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 know 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 okay 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 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 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 going to 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 want to think about it? He goes I don't need to think about it, let's do it. And I said okay we exchanged 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 hope 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 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 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 flushed 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 flavor gate? 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, we 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 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, and talk about, well, let's have a conversation about what, 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, me, recognized, 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 think, well, there's only a handful. No, no, no. When I go to a restaurant, I could have eight to 10 people with me. I could have, I could go frequently or more frequently to restaurants accommodate us and we're bringing in business and we're telling our friends to come and we're telling they're telling their friends to come and the disability community as you well 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
(25:07.416)
Hehehe. Yeah, you talk about how accessibility is good for business. Obviously, 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 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, 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, like 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 disabilities seamlessly. You also mention 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?
(27:06)
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. 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, you know 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 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.
(28:57)
Mm-hmm.
(28:58)
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 a 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, 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 going to allow for wheelchair accessible vehicles with the high 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 of 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 an 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 requirements. 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 want to 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 and 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.
(36:31)
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, you, 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 going to get all these businesses started by people who have no experience with disability, no understanding.
(36:53)
Right.
(37:00)
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 at, 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 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 your work on 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 to completely stress you out about it?
(37:57)
Yeah.
(38:04)
Yeah. Right, key takeaways. 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 costs, 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 did, 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 PARCAT. 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, okay? That you can't just say you're too disabled to go here or imply that by your admissions practices.
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, you know, misunderstood thing. If it's private, you're not above the law. 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 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 Selfield, and she enjoys all the rights and privileges that any other person who ambulates on two feet enjoys, and that's the takeaway.
(41:37)
Yeah, absolutely. And then recently, you've been working on the apartment complex in Boston. Is it in Mattapan? OK, with the broken elevator.
(41:45)
No, it's actually in the south end of Boston. 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 and 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 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 4th of July weekend, people who would ordinarily be doing their barbecues, going to the beach, whatever, they 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, you 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 filed a 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 you know, six weeks, it's broken down 17 times. It can be in layman's terms, that's fine. I happened 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 of... 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. We have 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 Bakk 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 led with the testimony and was representing as the 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, okay? Because you're just gonna look like a fool.
(49:46)
Mm-hmm
(49:49)
You're going to look close-minded. One, never make assumptions about people's disabilities, like I told you earlier. You're never going to 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 can 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 climb 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, Dawn? 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 was 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. And 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.
(52:14)
That's one thing I have a little bit of trouble with is like I never intend to speak on behalf of people with disabilities and it's sometimes I see so much like a lived experience is essential like 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 like how do you think people can be?
(52:33)
Right.
(52:42)
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?
(52:51)
Mm-hmm.
(52:57)
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?
in, you know, 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.
(54:06)
Yeah
(54:18)
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 want to deal with that. Okay, that tells 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 going to be as excited to speak up and say they have the same conversation over and over again, right?
That's like spouses who don't close the cabinet doors, wink, wink, I'm having this conversation, right? It just 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 that 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, 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.
(56:59)
itch.
(57:07)
And then other people were taking action. And the access board was like, oh my gosh, we have so many elevators from lanes 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 fine you every single day until you make it compliant. Well, that creates access.
(57:38)
Yeah, 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.
(57:38)
We don't wanna be like that.
(57:45)
That's right.
That's true.
(58:07)
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.
(58:25)
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, right? You've got heat, you've got hot water, right? Then maybe you go out, you go work out, you go to the gym, then you go get some food, then you go to your job. That's a whole area of 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 that 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…We are a community that values diversity, and disability is part of the diversity conversation. And 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, and we really need to do a lot more speaking up and helping people take notice of things everywhere. 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 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.
(01:00:56)
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?
(01:01:22)
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. 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.
(01:01:47)
Awesome. Bossam Marathon, you guys have a few bibs this year as well, right?
(01:01:50)
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 Slavergate 5K. So I met her back in 2016 when we first launched our racing program.
(01:02:08)
Yeah, yeah, awesome. Yeah, that's great. So playbrigade.com. Don, thanks for having those conversations. Say hi to Harper for me.
(01:02:15)
Of course I will. Thanks for having me on and call me anytime.