1 00:00:00,000 --> 00:00:01,840 All right, welcome to the AdaptX Podcast, 2 00:00:01,840 --> 00:00:03,640 where we have conversations with individuals 3 00:00:03,640 --> 00:00:05,280 who are building accessible businesses, 4 00:00:05,280 --> 00:00:08,720 advocating for inclusion or excelling in adaptive sports. 5 00:00:08,720 --> 00:00:10,400 Today we are joined by Dawn Oates. 6 00:00:10,400 --> 00:00:11,400 Dawn, thanks for joining me today. 7 00:00:11,400 --> 00:00:13,080 Well, my pleasure. 8 00:00:13,080 --> 00:00:15,400 Long time listener, first time caller here. 9 00:00:15,400 --> 00:00:17,740 Looking forward to learning from you today. 10 00:00:17,740 --> 00:00:20,920 You wear many hats, so instead of me doing you a disservice 11 00:00:20,920 --> 00:00:23,360 by trying to introduce you, I'll let you introduce yourself. 12 00:00:23,360 --> 00:00:24,320 Great, yeah, thanks. 13 00:00:24,320 --> 00:00:26,480 So when you and I met way back, 14 00:00:26,480 --> 00:00:29,440 I was the executive director of the Play Brigade, 15 00:00:29,440 --> 00:00:33,280 which is a nonprofit that I started in response 16 00:00:33,280 --> 00:00:35,040 to recognizing that my daughter, who 17 00:00:35,040 --> 00:00:39,840 was born with a spinal cord injury from my C-section, 18 00:00:39,840 --> 00:00:43,120 she had very limited options on what she could do to play. 19 00:00:43,120 --> 00:00:45,440 She was 18 months old, and I had been home with her 20 00:00:45,440 --> 00:00:47,040 like she was a house cat. 21 00:00:47,040 --> 00:00:49,800 And I thought, what would she be doing 22 00:00:49,800 --> 00:00:53,280 if she were a kid that didn't have disabilities? 23 00:00:53,280 --> 00:00:57,320 And that's what really prompted me to start the Play Brigade. 24 00:00:57,320 --> 00:01:00,240 And at the time, we were doing accessible playgrounds 25 00:01:00,240 --> 00:01:02,240 and adaptive equipment and things like that. 26 00:01:02,240 --> 00:01:05,400 And our mission at that time was really 27 00:01:05,400 --> 00:01:09,160 to create opportunities for inclusion in play recreation 28 00:01:09,160 --> 00:01:09,760 and sports. 29 00:01:09,760 --> 00:01:11,320 We really focused on what are the things 30 00:01:11,320 --> 00:01:13,440 that people needed to get out in the community to do 31 00:01:13,440 --> 00:01:14,920 to have fun, because what we find 32 00:01:14,920 --> 00:01:18,920 is when someone has an illness or an injury or a disability, 33 00:01:18,920 --> 00:01:21,000 there's this perception of the general public 34 00:01:21,000 --> 00:01:25,680 often that there is a place for people with disabilities, 35 00:01:25,680 --> 00:01:27,680 that they all go to some magical place 36 00:01:27,680 --> 00:01:30,440 and get all their fun and sports and everything altogether, 37 00:01:30,440 --> 00:01:32,560 and that everybody with disabilities knows everybody. 38 00:01:32,560 --> 00:01:34,680 And that's really not the case. 39 00:01:34,680 --> 00:01:36,680 And I was sitting in a place where 40 00:01:36,680 --> 00:01:41,960 I had two other children who were twins. 41 00:01:41,960 --> 00:01:44,080 They were 18 months old when Harper was born. 42 00:01:44,080 --> 00:01:47,160 And then here I am with three little kids 43 00:01:47,160 --> 00:01:50,120 under two years old at the time going, oh my gosh, 44 00:01:50,120 --> 00:01:52,320 I can't take them to the same places. 45 00:01:52,320 --> 00:01:54,880 Why don't we have more places where everybody participates 46 00:01:54,880 --> 00:01:56,920 and everybody belongs? 47 00:01:56,920 --> 00:01:58,720 And so the Play Brigade was really 48 00:01:58,720 --> 00:02:04,040 designed to create community that encourages people, 49 00:02:04,040 --> 00:02:06,200 no matter where they are, whether they have a disability 50 00:02:06,200 --> 00:02:10,440 or not, that create community perception that this is an issue 51 00:02:10,440 --> 00:02:14,040 and encourages barrier removal wherever possible 52 00:02:14,040 --> 00:02:17,320 and encourages participation and a sense of belonging 53 00:02:17,320 --> 00:02:19,280 among everybody in the community. 54 00:02:19,280 --> 00:02:21,360 And so the idea would be conceptually 55 00:02:21,360 --> 00:02:24,840 that, Brunjan, if you and I were going to go out to dinner, 56 00:02:24,840 --> 00:02:27,200 we would know that we could take my daughter with us 57 00:02:27,200 --> 00:02:28,080 if we wanted to. 58 00:02:28,080 --> 00:02:29,360 And she's a wheelchair user. 59 00:02:29,360 --> 00:02:31,720 And that she'd be able to get in everywhere we wanted to go. 60 00:02:31,720 --> 00:02:33,760 And that we would go to the bowling alley after, 61 00:02:33,760 --> 00:02:35,360 and there would be adaptive equipment for her. 62 00:02:35,360 --> 00:02:37,720 And this wouldn't be a whole big, hey, let me call ahead. 63 00:02:37,720 --> 00:02:38,840 Let me make sure. 64 00:02:38,840 --> 00:02:40,360 It says accessible on the website, 65 00:02:40,360 --> 00:02:42,400 but is it really accessible? 66 00:02:42,400 --> 00:02:44,200 Is this going to be a seamless experience 67 00:02:44,200 --> 00:02:48,040 where somebody could get in the door, get up to a table, 68 00:02:48,040 --> 00:02:50,880 do whatever the activity is, get into the restroom, 69 00:02:50,880 --> 00:02:52,560 use the restroom, that if there's a lift, 70 00:02:52,560 --> 00:02:55,520 that the lift is in good working condition, great. 71 00:02:55,520 --> 00:02:58,640 That was the idea, that everybody has word races, 72 00:02:58,640 --> 00:03:02,960 that there's entry areas for anyone, 73 00:03:02,960 --> 00:03:05,480 regardless of what their ability is, not just people 74 00:03:05,480 --> 00:03:07,160 who walk on two feet. 75 00:03:07,160 --> 00:03:09,760 So that's where we started. 76 00:03:09,760 --> 00:03:13,800 And we've come, I will say, a long way. 77 00:03:13,800 --> 00:03:17,520 I cautiously say that because there's such a long way to go. 78 00:03:17,520 --> 00:03:19,600 And I know you know that, Brunjan, 79 00:03:19,600 --> 00:03:23,960 because in order to sort of evangelism for inclusion, 80 00:03:23,960 --> 00:03:28,200 so to speak, if you've heard the word of inclusion 81 00:03:28,200 --> 00:03:30,720 and what that means, and you can wrap your brain around it, 82 00:03:30,720 --> 00:03:33,320 then you already sort of drank the Kool-Aid, 83 00:03:33,320 --> 00:03:34,160 and you can do it. 84 00:03:34,160 --> 00:03:36,560 But the idea is to tell as many people as possible 85 00:03:36,560 --> 00:03:38,840 and get people to have these aha moments, 86 00:03:38,840 --> 00:03:41,200 have these recognition moments where they say, 87 00:03:41,200 --> 00:03:43,800 oh, oh, I never thought of that. 88 00:03:43,800 --> 00:03:46,800 And truly, we don't live in a society, I believe, 89 00:03:46,800 --> 00:03:48,760 that wants to exclude people with disabilities. 90 00:03:48,760 --> 00:03:51,000 It's just unless you have a disability 91 00:03:51,000 --> 00:03:53,720 or are personally affected by it or know somebody who is, 92 00:03:53,720 --> 00:03:56,120 someone you care about, a friend or a family, 93 00:03:56,120 --> 00:03:58,520 you're really not necessarily gonna think about 94 00:03:58,520 --> 00:03:59,440 a lot of these things. 95 00:03:59,440 --> 00:04:01,920 And so that's where my organization comes into play, 96 00:04:01,920 --> 00:04:05,080 where we have conversations like the one I'm having with you. 97 00:04:05,080 --> 00:04:08,200 We talk about some of the issues and use examples, 98 00:04:08,200 --> 00:04:11,360 but we do what we call demonstration projects. 99 00:04:11,360 --> 00:04:14,640 And always being careful not to exploit people 100 00:04:14,640 --> 00:04:17,440 with disabilities, but to tell stories 101 00:04:17,440 --> 00:04:19,320 and have people with disabilities 102 00:04:19,320 --> 00:04:21,920 tell stories from their perspective 103 00:04:21,920 --> 00:04:24,000 so that other people understand what it's like, 104 00:04:24,000 --> 00:04:26,600 because it may be the first time you've heard about something 105 00:04:26,600 --> 00:04:28,240 and it could be the millionth time 106 00:04:28,240 --> 00:04:29,320 that a person with a disability 107 00:04:29,320 --> 00:04:30,440 has had to deal with something. 108 00:04:30,440 --> 00:04:33,880 And so having allyship, being upstanders, 109 00:04:33,880 --> 00:04:37,320 having appreciation for a path that somebody's traveling 110 00:04:37,320 --> 00:04:39,520 that may be new to them or may be old to them 111 00:04:39,520 --> 00:04:43,320 that we as a community can come together 112 00:04:43,320 --> 00:04:45,520 and make sure we're clearing obstacles, 113 00:04:45,520 --> 00:04:47,200 whether those are physical barriers 114 00:04:47,200 --> 00:04:49,640 or just thought barriers, 115 00:04:49,640 --> 00:04:51,920 things that get in the way of us recognizing, 116 00:04:51,920 --> 00:04:56,360 oh, this person can't do this if we don't do X, Y or Z. 117 00:04:56,360 --> 00:04:58,920 And that's what the Play Brigade has, excuse me, 118 00:04:58,920 --> 00:05:01,720 that is what the Play Brigade has morphed into 119 00:05:01,720 --> 00:05:04,000 or evolved into over time. 120 00:05:04,000 --> 00:05:07,400 No longer are we an organization that just says, 121 00:05:07,400 --> 00:05:10,280 we're gonna put accessible equipment in playgrounds. 122 00:05:10,280 --> 00:05:12,040 Yeah, that's where we started. 123 00:05:12,040 --> 00:05:15,720 But the pandemic showed us something pretty important. 124 00:05:15,720 --> 00:05:19,960 And that is there was a time where nobody was going out 125 00:05:19,960 --> 00:05:20,800 having fun. 126 00:05:20,800 --> 00:05:22,640 We weren't going to restaurants and bowling alleys. 127 00:05:22,640 --> 00:05:24,480 We weren't looking for things to do. 128 00:05:24,480 --> 00:05:27,040 We were inside and the population 129 00:05:27,040 --> 00:05:29,160 that I'm most familiar with right now, 130 00:05:29,160 --> 00:05:31,680 which is my daughter's population of people 131 00:05:31,680 --> 00:05:33,680 that have more severe disabilities, 132 00:05:34,600 --> 00:05:37,440 we're dealing with other things like housing, 133 00:05:37,440 --> 00:05:41,040 like education and healthcare equity issues. 134 00:05:41,040 --> 00:05:43,120 And I'll talk a little bit about those three things 135 00:05:43,120 --> 00:05:45,320 when you give me an opportunity to do that. 136 00:05:45,320 --> 00:05:47,760 But what we've done with the Play Brigade 137 00:05:47,760 --> 00:05:52,760 is we probably do 25% focus now on Play Rec and sports. 138 00:05:52,800 --> 00:05:56,200 And then the 75% is on those things that I just mentioned. 139 00:05:56,200 --> 00:06:00,440 And I can give you specific examples later on 140 00:06:00,440 --> 00:06:04,000 that will help showcase or demonstrate what that is, 141 00:06:04,000 --> 00:06:06,360 how it's different, what needs to change in 142 00:06:06,360 --> 00:06:09,520 and the strategies that we use to create that change. 143 00:06:09,520 --> 00:06:11,960 And I think that's the important thing 144 00:06:11,960 --> 00:06:14,120 that I hope to leave, take a reader. 145 00:06:14,120 --> 00:06:15,720 That's the important thing I hope 146 00:06:15,720 --> 00:06:17,320 to leave listeners with today. 147 00:06:17,320 --> 00:06:19,920 How can you do this in your own community, 148 00:06:19,920 --> 00:06:21,720 even without any experience? 149 00:06:21,720 --> 00:06:22,560 What do you do? 150 00:06:22,560 --> 00:06:23,400 Where do you go? 151 00:06:23,400 --> 00:06:25,800 What is conceptually the process of making change 152 00:06:25,800 --> 00:06:28,160 in your community in any number of areas? 153 00:06:29,080 --> 00:06:31,520 Yeah, well, I want to get to that 75%. 154 00:06:31,520 --> 00:06:33,400 There's a lot to unpack there. 155 00:06:33,400 --> 00:06:37,240 So you had mentioned, no, just like as you spoke, 156 00:06:37,240 --> 00:06:38,960 there were a lot of things that came to my mind 157 00:06:38,960 --> 00:06:41,880 and you mentioned demonstrating and sharing people's stories. 158 00:06:41,880 --> 00:06:43,480 That's one thing that I've always struggled with 159 00:06:43,480 --> 00:06:45,040 at my gym. 160 00:06:45,040 --> 00:06:46,920 It almost seems like, oh, look at me, 161 00:06:46,920 --> 00:06:49,280 I'm supporting people with disabilities. 162 00:06:49,280 --> 00:06:53,240 And whenever I post a client with a disability training, 163 00:06:53,240 --> 00:06:54,200 I get all the comments 164 00:06:54,200 --> 00:06:56,160 and half the time they're directed at me. 165 00:06:56,160 --> 00:06:58,160 I'm like, no, I'm like, no, 166 00:06:58,160 --> 00:06:59,960 I'm not looking for you to praise me 167 00:06:59,960 --> 00:07:01,080 for the work that I'm doing. 168 00:07:01,080 --> 00:07:03,720 I'm looking for you to recognize the ability 169 00:07:03,720 --> 00:07:05,880 that this person has so it can kind of reframe 170 00:07:05,880 --> 00:07:07,520 your expectation for disabilities. 171 00:07:07,520 --> 00:07:10,840 How do you think, how do you promote inclusion 172 00:07:10,840 --> 00:07:13,840 without exploiting? 173 00:07:13,840 --> 00:07:17,080 That is a really important question. 174 00:07:17,080 --> 00:07:19,600 And the answer is it depends on the situation 175 00:07:19,600 --> 00:07:21,160 and it depends on the person 176 00:07:21,160 --> 00:07:22,680 and the person's comfort level. 177 00:07:22,680 --> 00:07:27,040 There certainly are plenty of examples of, 178 00:07:27,040 --> 00:07:28,360 you may have heard, 179 00:07:28,360 --> 00:07:31,480 I know that you have heard about inspiration porn 180 00:07:31,480 --> 00:07:36,480 and inspiration porn is when you have a feel good story 181 00:07:37,120 --> 00:07:39,320 that showcases a person with a disability 182 00:07:39,320 --> 00:07:43,480 doing something ordinary that seems extraordinary. 183 00:07:43,480 --> 00:07:48,480 For example, we see a lot of clips on Instagram 184 00:07:48,520 --> 00:07:53,520 of people with mobility disabilities 185 00:07:53,960 --> 00:07:56,280 crossing the finish line of a marathon 186 00:07:56,280 --> 00:07:58,880 and it took them many, many hours to do it 187 00:07:58,880 --> 00:08:00,280 and the community is surrounding them 188 00:08:00,280 --> 00:08:03,920 and everybody goes away with a feel good feeling. 189 00:08:03,920 --> 00:08:06,280 That can be perceived as positive 190 00:08:06,280 --> 00:08:08,320 and it can be perceived as negative. 191 00:08:08,320 --> 00:08:11,200 And I think that it's tricky, 192 00:08:11,200 --> 00:08:13,680 I can't speak for everybody in the disability world 193 00:08:13,680 --> 00:08:16,120 but I can speak for myself. 194 00:08:16,120 --> 00:08:17,840 I am a person with a disability 195 00:08:17,840 --> 00:08:21,160 and you can't tell by looking at me 196 00:08:21,160 --> 00:08:25,320 but I have hearing aids, I wear bilateral hearing aids 197 00:08:25,320 --> 00:08:29,480 and so I sometimes need to sit close in a theater 198 00:08:29,480 --> 00:08:34,200 or need to have captioning on and Zoom calls 199 00:08:34,200 --> 00:08:35,480 or things like that. 200 00:08:35,480 --> 00:08:39,640 But in my everyday existence, 201 00:08:39,640 --> 00:08:44,640 I don't feel discrimination or exploitation 202 00:08:44,960 --> 00:08:46,560 because of my disability. 203 00:08:46,560 --> 00:08:50,200 But my daughter does have and will continue to do that 204 00:08:50,200 --> 00:08:52,280 and so it's important to make sure that 205 00:08:52,280 --> 00:08:55,080 if you're working closely with somebody with a disability 206 00:08:55,080 --> 00:08:56,440 and you're trying to be an upstander, 207 00:08:56,440 --> 00:08:59,360 that you always make sure that you talk to the person 208 00:08:59,360 --> 00:09:02,600 if that person has the cognitive ability to consent 209 00:09:02,600 --> 00:09:05,640 and to articulate what they want, 210 00:09:05,640 --> 00:09:07,480 if not them then their guardian 211 00:09:07,480 --> 00:09:09,320 and what's in their best interest. 212 00:09:09,320 --> 00:09:11,560 And explain what you're doing 213 00:09:11,560 --> 00:09:13,520 and see how the person feels about that. 214 00:09:13,520 --> 00:09:15,320 And if you're not getting consent 215 00:09:15,320 --> 00:09:17,880 and you're not getting wholehearted agreement on something, 216 00:09:17,880 --> 00:09:19,720 then it's time to pause and say, 217 00:09:19,720 --> 00:09:22,520 well maybe I shouldn't be doing this. 218 00:09:22,520 --> 00:09:24,880 We did have a tough situation once 219 00:09:24,880 --> 00:09:29,200 where we had somebody with a visual disability, 220 00:09:29,200 --> 00:09:32,520 a vision disability who was legally blind, 221 00:09:32,520 --> 00:09:34,760 who was running the Boston Marathon 222 00:09:34,760 --> 00:09:39,160 and his two guide runners at the time were, 223 00:09:39,160 --> 00:09:44,160 it appeared to be more self-serving that they were guides, 224 00:09:44,440 --> 00:09:46,560 really self-promoting they were guides. 225 00:09:46,560 --> 00:09:49,040 It was, they were doing things with their business 226 00:09:49,040 --> 00:09:52,120 that was things that were, 227 00:09:52,120 --> 00:09:53,920 to me I wouldn't have made that call, 228 00:09:53,920 --> 00:09:58,120 like doing things that would drive people to their business, 229 00:09:58,120 --> 00:10:00,000 like look at us, look what we're doing. 230 00:10:00,000 --> 00:10:02,800 And so we ended up, 231 00:10:02,800 --> 00:10:05,080 that ended up not being the direction 232 00:10:05,080 --> 00:10:06,800 that this runner went. 233 00:10:07,640 --> 00:10:09,720 And in terms of guide runners, 234 00:10:09,720 --> 00:10:12,480 it's not always gonna be that clear 235 00:10:12,480 --> 00:10:14,560 because on the one hand you have somebody 236 00:10:14,560 --> 00:10:15,920 who's in the helping role, 237 00:10:15,920 --> 00:10:17,040 on the other hand you have, 238 00:10:17,040 --> 00:10:21,120 well they're using the story for gain or self-promotion. 239 00:10:21,120 --> 00:10:24,640 If it feels wrong, generally it's not good. 240 00:10:24,640 --> 00:10:28,760 And so for me, I spoke to the person 241 00:10:28,760 --> 00:10:32,360 who they were guiding and got input from the family 242 00:10:32,360 --> 00:10:35,000 and we landed in this isn't the right fit 243 00:10:35,000 --> 00:10:36,640 and this isn't the way we wanna do this. 244 00:10:36,640 --> 00:10:39,640 We were fortunate to get some really good media 245 00:10:39,640 --> 00:10:42,320 that really focused on the runner. 246 00:10:42,320 --> 00:10:43,600 And that's what we wanna do. 247 00:10:43,600 --> 00:10:46,240 The runner, what the runner feels is important 248 00:10:46,240 --> 00:10:48,080 and what that runner felt was important 249 00:10:48,080 --> 00:10:49,960 was not the business of the two guides 250 00:10:49,960 --> 00:10:52,400 that were running with him, 251 00:10:52,400 --> 00:10:55,760 but getting him across the finish line, 252 00:10:56,720 --> 00:10:58,720 supporting him and getting across the finish line 253 00:10:58,720 --> 00:11:00,120 because he was the focus, 254 00:11:00,120 --> 00:11:03,600 not the people who are serving in a support 255 00:11:03,600 --> 00:11:05,160 and empowerment role. 256 00:11:05,160 --> 00:11:07,720 At least that's my off the cuff opinion. 257 00:11:07,720 --> 00:11:10,800 If you ask 10 people that question, 258 00:11:10,800 --> 00:11:13,320 they're all gonna answer you a little bit differently 259 00:11:13,320 --> 00:11:15,680 and I just always leave space for the voice 260 00:11:15,680 --> 00:11:17,880 of the person with a disability. 261 00:11:17,880 --> 00:11:19,240 What are they okay with? 262 00:11:19,240 --> 00:11:24,240 And also recognizing that there's the cause 263 00:11:25,160 --> 00:11:27,480 and then there's the situation. 264 00:11:27,480 --> 00:11:29,200 And in the situation, 265 00:11:29,200 --> 00:11:31,680 you might just wanna deal with this situation 266 00:11:31,680 --> 00:11:36,120 not be a megaphone for the cause. 267 00:11:36,120 --> 00:11:38,480 And while I like it when people are the megaphone 268 00:11:38,480 --> 00:11:41,000 for the cause, excuse me, 269 00:11:41,000 --> 00:11:43,160 I've certainly been told no. 270 00:11:43,160 --> 00:11:44,920 In fact, if we have a minute, 271 00:11:44,920 --> 00:11:47,440 I'll tell you a little bit about the first time I had 272 00:11:47,440 --> 00:11:49,960 to ask somebody with a disability to participate 273 00:11:49,960 --> 00:11:53,600 in something that would be the megaphone for the cause. 274 00:11:53,600 --> 00:11:55,080 Is this a good time for that? 275 00:11:55,080 --> 00:11:55,920 Okay. 276 00:11:55,920 --> 00:12:00,040 So some people know this story. 277 00:12:00,040 --> 00:12:04,040 In the beginning, when I first started doing this work, 278 00:12:04,040 --> 00:12:06,160 about maybe four years into it, 279 00:12:06,160 --> 00:12:08,000 we're almost 10 years old now, 280 00:12:09,760 --> 00:12:12,000 I was invited to participate in a fundraiser 281 00:12:12,000 --> 00:12:12,840 for the Play Brigade. 282 00:12:12,840 --> 00:12:16,280 So that's something that would give our organization money 283 00:12:16,280 --> 00:12:18,520 that we would be able to use to buy equipment 284 00:12:18,520 --> 00:12:21,480 or do programming that people with disabilities need 285 00:12:21,480 --> 00:12:22,360 and want. 286 00:12:22,360 --> 00:12:24,520 And I thought, oh great, great opportunity 287 00:12:24,520 --> 00:12:25,480 to do this fundraiser. 288 00:12:25,480 --> 00:12:28,120 The fundraiser was a dance competition. 289 00:12:28,120 --> 00:12:30,080 I am a terrible dancer, 290 00:12:30,080 --> 00:12:33,000 but I agreed to do it for the cause. 291 00:12:33,000 --> 00:12:36,720 And they paired me with a choreographer 292 00:12:36,720 --> 00:12:39,240 and I showed up at the dance studio one day 293 00:12:39,240 --> 00:12:40,880 and it was really nagging me. 294 00:12:40,880 --> 00:12:41,880 It was really bugging me. 295 00:12:41,880 --> 00:12:43,880 I thought, what am I doing here? 296 00:12:43,880 --> 00:12:45,320 I'm doing a dance competition. 297 00:12:45,320 --> 00:12:49,160 It's totally unrelated to anything except it's recreation. 298 00:12:49,160 --> 00:12:50,600 What does that have to do with inclusion? 299 00:12:50,600 --> 00:12:53,600 And I thought, oh, wait a minute. 300 00:12:53,600 --> 00:12:57,920 We're all about showcasing what true community inclusion is 301 00:12:57,920 --> 00:13:00,480 and helping people understand and see what it is, 302 00:13:00,480 --> 00:13:01,760 see what that means. 303 00:13:01,760 --> 00:13:04,800 And so in this case, when my choreographer said to me, 304 00:13:06,120 --> 00:13:09,360 have you thought about what you wanna do for a dance? 305 00:13:09,360 --> 00:13:11,320 I immediately said yes. 306 00:13:11,320 --> 00:13:13,720 And he said, well, tell me. 307 00:13:13,720 --> 00:13:16,360 And I said, I don't wanna dance with you. 308 00:13:16,360 --> 00:13:20,000 And he was taken aback, maybe even slightly offended. 309 00:13:20,000 --> 00:13:21,880 And I said, let me explain this. 310 00:13:21,880 --> 00:13:24,080 This organization is dedicated to the inclusion 311 00:13:24,080 --> 00:13:27,200 of people with disabilities and play recreation sports. 312 00:13:27,200 --> 00:13:30,480 What kind of role model am I if I get on the stage 313 00:13:30,480 --> 00:13:32,240 and do what's predictable? 314 00:13:32,240 --> 00:13:36,000 That people who ambulate on two feet expect, 315 00:13:36,000 --> 00:13:38,800 they expect to see two people dancing together. 316 00:13:40,680 --> 00:13:42,440 People with disabilities can dance. 317 00:13:44,000 --> 00:13:46,560 I would like to find somebody as a dance partner 318 00:13:46,560 --> 00:13:50,440 who has a disability to help me showcase what this means 319 00:13:50,440 --> 00:13:52,560 and make people feel something. 320 00:13:52,560 --> 00:13:55,720 And so I looked everywhere for somebody 321 00:13:55,720 --> 00:13:57,800 that I could dance with, knowing that it was awkward, 322 00:13:57,800 --> 00:13:59,880 knowing that this could be exploitative, 323 00:13:59,880 --> 00:14:02,840 my organization is going to benefit from this 324 00:14:02,840 --> 00:14:04,080 and so that we could do things, 325 00:14:04,080 --> 00:14:06,760 but also we would be able to be fulfilling our mission 326 00:14:06,760 --> 00:14:08,600 by showcasing what this is. 327 00:14:08,600 --> 00:14:10,960 So it was really a struggle for me for a little while. 328 00:14:10,960 --> 00:14:12,720 And it's also awkward and embarrassing 329 00:14:12,720 --> 00:14:14,960 just picking a random person that I don't know 330 00:14:14,960 --> 00:14:16,800 and saying, hey, would you like to dance with me? 331 00:14:16,800 --> 00:14:18,560 And how does that make them feel? 332 00:14:18,560 --> 00:14:22,040 So there's a lot of thinking that I went through 333 00:14:22,040 --> 00:14:25,800 and I really was discouraged for a while. 334 00:14:25,800 --> 00:14:28,320 It took me about three weeks before I found a partner 335 00:14:28,320 --> 00:14:30,680 and I only asked three people. 336 00:14:31,600 --> 00:14:33,800 One person I didn't have the guts to say, 337 00:14:33,800 --> 00:14:36,360 hey, would you do it with me? 338 00:14:36,360 --> 00:14:38,480 Instead I said, do you know anybody? 339 00:14:38,480 --> 00:14:40,520 And I was just really kind of hinting around it 340 00:14:40,520 --> 00:14:42,400 and I was getting the vibe that he wasn't gonna do it 341 00:14:42,400 --> 00:14:43,520 with me. 342 00:14:43,520 --> 00:14:48,280 So then I asked just a random guy on the Boston Common 343 00:14:48,280 --> 00:14:52,200 and he shot me down because he said he was from Colorado 344 00:14:52,200 --> 00:14:54,120 and I, oh, that's not gonna work. 345 00:14:54,120 --> 00:14:57,200 And then I left and I was supposed to be scheduled 346 00:14:57,200 --> 00:15:00,760 for a phone call with somebody, like a work call. 347 00:15:00,760 --> 00:15:03,960 And I actually called her and said, you know what? 348 00:15:03,960 --> 00:15:05,560 Can we postpone this a half an hour? 349 00:15:05,560 --> 00:15:07,320 I've got some unfinished business. 350 00:15:07,320 --> 00:15:11,240 And I got my courage up and I went back to where I was. 351 00:15:11,240 --> 00:15:14,040 And by the way, it was the anniversary of ADA, 352 00:15:14,040 --> 00:15:16,440 the Americans with Disabilities Act on the Boston Common. 353 00:15:16,440 --> 00:15:17,480 It was a big celebration. 354 00:15:17,480 --> 00:15:19,040 I thought if I'm gonna find a dance partner, 355 00:15:19,040 --> 00:15:20,920 it's gonna be here in this space 356 00:15:20,920 --> 00:15:22,760 that I'll find this person today. 357 00:15:22,760 --> 00:15:25,240 I just really, it was new to me. 358 00:15:25,240 --> 00:15:27,280 It was awkward, it was uncomfortable. 359 00:15:27,280 --> 00:15:29,120 But I just said, okay, you can do this. 360 00:15:29,120 --> 00:15:31,880 I went back and I just sort of did a scan of the field 361 00:15:32,880 --> 00:15:36,360 and I saw a guy with a really cool adaptive bike 362 00:15:36,360 --> 00:15:38,200 attached to the front of his wheelchair 363 00:15:38,200 --> 00:15:40,160 and I thought, that's my guy. 364 00:15:40,160 --> 00:15:44,160 And I went right towards him and you know, okay, 365 00:15:44,160 --> 00:15:45,840 he's sporty, this is gonna happen. 366 00:15:45,840 --> 00:15:48,240 And I asked him if he was a sporty guy 367 00:15:48,240 --> 00:15:50,640 and he said, I consider myself a sporty guy. 368 00:15:50,640 --> 00:15:52,480 And I said, well, this is my situation. 369 00:15:52,480 --> 00:15:54,440 I've been looking for this dance partner. 370 00:15:54,440 --> 00:15:56,200 I run this organization about inclusion 371 00:15:56,200 --> 00:15:57,960 of people with disabilities. 372 00:15:57,960 --> 00:16:01,960 And you know, I would love it if you would be willing 373 00:16:01,960 --> 00:16:04,560 to dance with me for this competition. 374 00:16:04,560 --> 00:16:08,640 Is that something you'd be willing to do? 375 00:16:08,640 --> 00:16:12,160 And I was pretty direct and he said, 376 00:16:12,160 --> 00:16:16,680 to be honest with you, I'm not really comfortable with that. 377 00:16:16,680 --> 00:16:18,640 And I had to respect that. 378 00:16:19,800 --> 00:16:23,560 And I sighed, which he would later tell me 379 00:16:23,560 --> 00:16:25,320 when we talked about this. 380 00:16:25,320 --> 00:16:26,920 My shoulders dropped. 381 00:16:26,920 --> 00:16:29,440 I took a step back and I dropped my chin, 382 00:16:29,440 --> 00:16:31,520 almost to my chest, like really defeated 383 00:16:31,520 --> 00:16:33,280 and I didn't even realize I had done that. 384 00:16:33,280 --> 00:16:35,080 He later recounted that to me. 385 00:16:35,080 --> 00:16:38,000 And in that moment, I just said to him, 386 00:16:38,880 --> 00:16:40,320 okay, well, I'm sorry. 387 00:16:40,320 --> 00:16:43,720 I was apologetic and I said, I just really, 388 00:16:43,720 --> 00:16:48,720 thinking about the idea of my daughter being left inside 389 00:16:48,880 --> 00:16:50,680 while all of her friends are going out, 390 00:16:50,680 --> 00:16:53,760 doing other things in the community is really just, 391 00:16:53,760 --> 00:16:58,160 it really is devastating to me to have that thought. 392 00:16:58,160 --> 00:17:01,080 And he looked at me and he said, I'll do it. 393 00:17:02,320 --> 00:17:04,200 And I said, what? 394 00:17:04,200 --> 00:17:06,040 He said, yeah, I'll do it, let's do it. 395 00:17:06,040 --> 00:17:07,360 And I said, wait, do you wanna think about it? 396 00:17:07,360 --> 00:17:10,480 He goes, I don't need to think about it, let's do it. 397 00:17:10,480 --> 00:17:13,360 And I said, okay, we exchanged numbers 398 00:17:13,360 --> 00:17:14,880 and I waited a few days to call him 399 00:17:14,880 --> 00:17:17,280 because I thought if he's gonna change his mind, 400 00:17:17,280 --> 00:17:19,400 I want him to change his mind now. 401 00:17:19,400 --> 00:17:23,840 And when I called him, I said, hey, this is Dawn. 402 00:17:23,840 --> 00:17:25,960 You know, we met and I just wanted to see 403 00:17:25,960 --> 00:17:28,680 if you still might be interested. 404 00:17:28,680 --> 00:17:30,240 And he said, I told you I'd do it, 405 00:17:30,240 --> 00:17:32,240 I'm not gonna change my mind, let's do this. 406 00:17:32,240 --> 00:17:35,280 Now, once I got to know him, we started dancing together. 407 00:17:35,280 --> 00:17:37,640 We eventually went on to win the competition. 408 00:17:38,520 --> 00:17:40,160 We got to know each other really well. 409 00:17:40,160 --> 00:17:42,800 And in the process of getting to know each other, 410 00:17:42,800 --> 00:17:46,320 what he revealed to me was that he had been 411 00:17:46,320 --> 00:17:50,200 in his apartment alone for three months. 412 00:17:50,200 --> 00:17:53,800 He was new in Boston and he didn't have a single friend. 413 00:17:53,800 --> 00:17:56,280 And the only reason he went out is because he had gotten 414 00:17:56,280 --> 00:17:59,480 a new adaptive hand cycle to attach to his wheelchair 415 00:17:59,480 --> 00:18:01,760 and that it was the anniversary of ADA. 416 00:18:01,760 --> 00:18:03,520 So he thought he'd get out there. 417 00:18:03,520 --> 00:18:05,840 And when I spoke to him about my daughter, 418 00:18:05,840 --> 00:18:08,320 I was really speaking to him about some feeling 419 00:18:08,320 --> 00:18:10,040 that he was familiar with. 420 00:18:10,040 --> 00:18:13,240 And so it was just that little poke 421 00:18:13,240 --> 00:18:16,520 that brought both of us together in the most incredible way 422 00:18:16,520 --> 00:18:20,520 because he's now, you know, really has recognized 423 00:18:23,240 --> 00:18:26,400 his value in the community of people 424 00:18:26,400 --> 00:18:29,960 that hadn't thought of him before, you know, 425 00:18:29,960 --> 00:18:31,720 in the ways that he had experienced. 426 00:18:31,720 --> 00:18:34,080 And now he understands through our organization, 427 00:18:34,080 --> 00:18:38,720 through his participation, through going to our 5K, 428 00:18:38,720 --> 00:18:40,280 running on our Boston Marathon team, 429 00:18:40,280 --> 00:18:42,080 being in the dance competition, 430 00:18:42,080 --> 00:18:43,760 he's got friends that just give him a call 431 00:18:43,760 --> 00:18:45,000 to get together for breakfast. 432 00:18:45,000 --> 00:18:46,240 He's got friends thinking about him 433 00:18:46,240 --> 00:18:48,000 and throwing him a birthday party 434 00:18:48,000 --> 00:18:51,200 and, you know, doing it in a place that works for him, 435 00:18:51,200 --> 00:18:52,520 not just for them. 436 00:18:52,520 --> 00:18:53,680 When people go out and they're like, 437 00:18:53,680 --> 00:18:56,760 let's give him a call, they're factoring in that. 438 00:18:56,760 --> 00:18:57,920 They're considering that. 439 00:18:57,920 --> 00:19:00,800 And they're not just considering that with him. 440 00:19:00,800 --> 00:19:02,640 Now they're considering it in other places 441 00:19:02,640 --> 00:19:05,120 where they show up and they see, oh, there's a step here. 442 00:19:05,120 --> 00:19:08,840 We can't go here with all of our friends. 443 00:19:08,840 --> 00:19:12,280 So I also find that groups of people 444 00:19:12,280 --> 00:19:15,640 who understand accessibility barriers 445 00:19:15,640 --> 00:19:19,640 will make other decisions not to patronize a certain place, 446 00:19:19,640 --> 00:19:21,040 if not everybody can get in, 447 00:19:21,040 --> 00:19:23,440 which is a really interesting thing. 448 00:19:23,440 --> 00:19:26,000 Not all the time, but it's a really interesting thing 449 00:19:26,000 --> 00:19:31,000 that leads me to a really related issue 450 00:19:31,320 --> 00:19:35,200 that we're seeing now, now that the pandemic has, 451 00:19:35,200 --> 00:19:38,720 the public health emergency was declared over 452 00:19:38,720 --> 00:19:41,840 and all of the restaurants have gone back 453 00:19:41,840 --> 00:19:44,320 to sort of normal operating procedure. 454 00:19:44,320 --> 00:19:48,640 What I've noticed was when the pandemic happened 455 00:19:49,560 --> 00:19:52,920 and all of the, I'm talking about in Boston proper 456 00:19:52,920 --> 00:19:55,240 and some surrounding areas, 457 00:19:55,240 --> 00:19:59,880 we saw restaurants in particular starved for business. 458 00:19:59,880 --> 00:20:02,240 So they were doing outdoor seating. 459 00:20:02,240 --> 00:20:05,360 This outdoor seating mandated by the city of Boston 460 00:20:05,360 --> 00:20:07,080 needed to be accessible. 461 00:20:07,080 --> 00:20:09,520 So you're seeing restaurants put out ramps 462 00:20:09,520 --> 00:20:11,520 at street level, sidewalk level, 463 00:20:11,520 --> 00:20:13,640 using the street that usually is reserved 464 00:20:13,640 --> 00:20:15,760 for parking spaces for cars. 465 00:20:15,760 --> 00:20:17,880 Those cars weren't allowed to park there. 466 00:20:17,880 --> 00:20:19,880 They would put platforms in that were flush 467 00:20:19,880 --> 00:20:23,720 with the sidewalk so people with and without disabilities 468 00:20:23,720 --> 00:20:25,480 were able to come to those restaurants 469 00:20:25,480 --> 00:20:28,920 and enjoy dinner outside during COVID. 470 00:20:28,920 --> 00:20:32,000 Now that went on for we know how long, right? 471 00:20:32,000 --> 00:20:35,160 And then not too far long ago, 472 00:20:35,160 --> 00:20:37,600 that public health emergency was over 473 00:20:37,600 --> 00:20:40,640 and restaurants started resuming their normal activities. 474 00:20:40,640 --> 00:20:43,000 What did we do at the Play Brigade? 475 00:20:43,000 --> 00:20:46,880 We started watching and strategizing 476 00:20:46,880 --> 00:20:49,640 how we could connect with city officials, 477 00:20:49,640 --> 00:20:52,840 which is we've got a whole list of things to do, right? 478 00:20:52,840 --> 00:20:55,000 And bandwidth, you have to prioritize 479 00:20:55,000 --> 00:20:57,400 what's the most important, which we'll get to. 480 00:20:57,400 --> 00:20:58,880 But on our list of projects, 481 00:20:58,880 --> 00:21:02,840 we've been watching how many restaurants maintain 482 00:21:02,840 --> 00:21:06,600 that outdoor seating because inadvertently, 483 00:21:06,600 --> 00:21:09,080 we saw many, many, many restaurants 484 00:21:09,080 --> 00:21:12,960 that people with disabilities could not previously get into. 485 00:21:12,960 --> 00:21:14,280 They were able to get in. 486 00:21:14,280 --> 00:21:16,280 They were able to try places they never would have been able 487 00:21:16,280 --> 00:21:18,640 to try had the pandemic not occurred. 488 00:21:18,640 --> 00:21:22,440 But what we're seeing now is that's being scaled back 489 00:21:22,440 --> 00:21:24,280 and those places are no longer accessible. 490 00:21:24,280 --> 00:21:26,240 Many of them are no longer accessible. 491 00:21:26,240 --> 00:21:28,560 Pandemic's over, let's take that away. 492 00:21:28,560 --> 00:21:30,680 But the way I see it, because I've been doing this 493 00:21:30,680 --> 00:21:34,000 for almost 12 years now with my daughter, 494 00:21:34,000 --> 00:21:36,920 the way I see it, that was a reasonable accommodation. 495 00:21:36,920 --> 00:21:39,200 Wasn't overly burdensome to the business, 496 00:21:39,200 --> 00:21:41,960 didn't fundamentally alter the way they did business. 497 00:21:41,960 --> 00:21:45,240 Those are the two factors that make an accommodation 498 00:21:45,240 --> 00:21:48,280 need to be granted under the Americans with Disabilities Act. 499 00:21:48,280 --> 00:21:51,880 So I could theoretically go to any restaurant and say, 500 00:21:51,880 --> 00:21:56,680 or go to the city of Boston and talk about, 501 00:21:56,680 --> 00:21:59,560 well, let's have a conversation about 502 00:21:59,560 --> 00:22:01,600 how we can raise the bar in our city. 503 00:22:01,600 --> 00:22:03,560 Sure, Newberry Street, for example, 504 00:22:03,560 --> 00:22:06,240 a lot of historic buildings, a lot of them grandfathered in 505 00:22:06,240 --> 00:22:11,000 and they don't really have to be fully ADA compliant 506 00:22:11,000 --> 00:22:16,000 unless they spend 30% or more of the full and fair value, 507 00:22:17,280 --> 00:22:19,040 I might be saying that phrase wrong, 508 00:22:19,040 --> 00:22:23,600 of the value of the building in construction and renovation. 509 00:22:23,600 --> 00:22:25,520 Once they go over that 30%, 510 00:22:25,520 --> 00:22:27,840 they must put in a lift or an elevator. 511 00:22:27,840 --> 00:22:29,760 They must be wheelchair accessible. 512 00:22:29,760 --> 00:22:31,480 So we see that since 1990, 513 00:22:31,480 --> 00:22:33,800 a lot of those places on Newberry Street 514 00:22:33,800 --> 00:22:36,160 where you have these brownstones that are only accessible 515 00:22:36,160 --> 00:22:38,880 by going upstairs or by going downstairs, 516 00:22:38,880 --> 00:22:42,360 have not done major modifications to the buildings 517 00:22:42,360 --> 00:22:45,160 because it would require them to put in a lift 518 00:22:45,160 --> 00:22:46,360 or an elevator. 519 00:22:46,360 --> 00:22:48,440 But let's not talk about it. 520 00:22:48,440 --> 00:22:51,520 That being the only way of getting into that store 521 00:22:51,520 --> 00:22:52,680 or restaurant. 522 00:22:52,680 --> 00:22:56,120 If you were being able to do business outside during COVID, 523 00:22:57,520 --> 00:23:01,320 you've inadvertently provided a reasonable accommodation 524 00:23:01,320 --> 00:23:05,760 to restaurant patrons who have disabilities. 525 00:23:05,760 --> 00:23:08,360 So theoretically, we know that it didn't cause 526 00:23:08,360 --> 00:23:10,840 an undue burden and the burden is measured 527 00:23:10,840 --> 00:23:12,480 administratively or financially, 528 00:23:12,480 --> 00:23:14,240 like what is the cost of doing this 529 00:23:14,240 --> 00:23:16,960 versus the total revenue that your business brings in 530 00:23:16,960 --> 00:23:21,280 and two, does it fundamentally alter the way you do business? 531 00:23:21,280 --> 00:23:24,240 No, you're still serving food in a restaurant to people 532 00:23:24,240 --> 00:23:25,520 as you've done it in the past. 533 00:23:25,520 --> 00:23:29,520 So that's an opportunity that a regular citizen 534 00:23:29,520 --> 00:23:33,000 may recognize, hey, wait a minute, 535 00:23:33,000 --> 00:23:37,080 we are poised for positive change all over the place 536 00:23:37,080 --> 00:23:38,640 because we know restaurants can do it. 537 00:23:38,640 --> 00:23:41,000 We also know that people with disabilities 538 00:23:41,000 --> 00:23:43,040 that don't often get catered to 539 00:23:43,040 --> 00:23:46,640 because restaurants say, well, there's only a handful. 540 00:23:46,640 --> 00:23:48,720 No, no, no, no, when I go to a restaurant, 541 00:23:48,720 --> 00:23:51,400 I could have eight to 10 people with me. 542 00:23:51,400 --> 00:23:54,760 I could go frequently or more frequently 543 00:23:54,760 --> 00:23:57,400 to restaurants that accommodate us 544 00:23:57,400 --> 00:23:58,560 and we're bringing in business 545 00:23:58,560 --> 00:24:00,040 and we're telling our friends to come 546 00:24:00,040 --> 00:24:02,480 and they're telling their friends to come 547 00:24:02,480 --> 00:24:06,280 and the disability community, as you all know, is a network. 548 00:24:06,280 --> 00:24:07,760 I know you through this network. 549 00:24:07,760 --> 00:24:09,560 We all kind of can know each other 550 00:24:09,560 --> 00:24:11,440 and get on the different social media pages 551 00:24:11,440 --> 00:24:14,560 and share our information, including accolades 552 00:24:14,560 --> 00:24:17,160 for how we are treated when we're out in public 553 00:24:17,160 --> 00:24:19,760 with our friend or loved one with a disability. 554 00:24:19,760 --> 00:24:24,480 So that just kind of gave you a long-winded access 555 00:24:24,480 --> 00:24:25,920 into the way my brain works. 556 00:24:25,920 --> 00:24:27,760 I'm always looking, I'm always thinking, 557 00:24:27,760 --> 00:24:30,600 I'm always seeing ways to improve. 558 00:24:30,600 --> 00:24:35,600 What stands between me right now saying that to you 559 00:24:35,640 --> 00:24:38,000 and the city actually accommodating it? 560 00:24:38,000 --> 00:24:40,320 That's a whole different story. 561 00:24:40,320 --> 00:24:42,120 That's about telling the stories 562 00:24:42,120 --> 00:24:44,680 and shifting power from a person responsible 563 00:24:44,680 --> 00:24:47,120 for making a decision, which we'll get to. 564 00:24:48,240 --> 00:24:50,440 Yeah, you talk about how accessibility 565 00:24:50,440 --> 00:24:52,160 is good for business, obviously there. 566 00:24:52,160 --> 00:24:55,760 The more accessible it is, the more patrons come in 567 00:24:55,760 --> 00:24:58,160 and you refer to your friends and so on and so forth. 568 00:24:58,160 --> 00:25:00,400 But I think people are still kind of stuck 569 00:25:00,400 --> 00:25:03,600 in this reductionist, like I have to invest 570 00:25:03,600 --> 00:25:07,000 X amount of money into this accessibility accommodation 571 00:25:07,000 --> 00:25:09,080 and like, oh, no one has ever come 572 00:25:09,080 --> 00:25:10,440 to my restaurant in a wheelchair. 573 00:25:10,440 --> 00:25:11,480 And it's like, yeah, obviously, 574 00:25:11,480 --> 00:25:13,000 because they can't get into your restaurant. 575 00:25:13,000 --> 00:25:17,600 So it's like, you miss not only that specific consumer, 576 00:25:17,600 --> 00:25:20,560 but everyone within their network as well. 577 00:25:20,560 --> 00:25:22,080 And so that's what we kind of talk about, 578 00:25:22,080 --> 00:25:23,360 how accessibility is good for business. 579 00:25:23,360 --> 00:25:25,200 I think even on your website, 580 00:25:25,200 --> 00:25:26,800 you talk about for Play Brigade, 581 00:25:26,800 --> 00:25:30,600 how it's not just about specialized equipment. 582 00:25:30,600 --> 00:25:32,760 Obviously physical accessibility is essential, 583 00:25:32,760 --> 00:25:34,760 but that's another thing that when we work 584 00:25:34,760 --> 00:25:36,560 with gym owners and stuff, we talk about, 585 00:25:36,560 --> 00:25:39,040 I think they have this vision of like a spalding 586 00:25:39,040 --> 00:25:41,320 with all these complex pieces of equipment 587 00:25:41,320 --> 00:25:42,800 and they're like, oh, I can never do that. 588 00:25:42,800 --> 00:25:43,880 That's way too expensive. 589 00:25:43,880 --> 00:25:46,080 I don't have the space for that, et cetera. 590 00:25:46,080 --> 00:25:48,560 But it's easy to show, like in my facility, 591 00:25:48,560 --> 00:25:50,280 it looks like any other gym, 592 00:25:50,280 --> 00:25:53,240 what you can do with the equipment is more important 593 00:25:53,240 --> 00:25:55,960 than the complex adaptive equipment you have. 594 00:25:55,960 --> 00:26:00,400 And so you talk about how inclusion's not fancy equipment. 595 00:26:00,400 --> 00:26:02,200 It's a sense of belonging. 596 00:26:02,200 --> 00:26:04,240 It's incorporating people with or without disability 597 00:26:04,240 --> 00:26:05,840 seamlessly. 598 00:26:05,840 --> 00:26:09,200 You also mentioned how some of your accessibility 599 00:26:09,200 --> 00:26:14,160 advocacy work is maybe influenced by your daughter, 600 00:26:14,160 --> 00:26:18,920 but you recognize that it's not for her specifically. 601 00:26:18,920 --> 00:26:20,720 It's for all these other people. 602 00:26:20,720 --> 00:26:24,120 So like, were you, was this on your radar 603 00:26:24,120 --> 00:26:25,880 before Harper was born? 604 00:26:25,880 --> 00:26:28,240 Well, I wanna be able to say no, 605 00:26:28,240 --> 00:26:30,240 and I don't know why I'm saying yes, 606 00:26:30,240 --> 00:26:31,800 but I'm gonna tell you a little story. 607 00:26:31,800 --> 00:26:36,280 So prior to me having Harper, I was actually pregnant with, 608 00:26:36,280 --> 00:26:37,840 I was pregnant with Harper at the time, 609 00:26:37,840 --> 00:26:41,880 that the year was, I wanna say 2011. 610 00:26:41,880 --> 00:26:45,000 It was maybe, I don't know, it was winter months. 611 00:26:45,000 --> 00:26:50,000 And I was involved in a, I lived in a new development. 612 00:26:50,840 --> 00:26:52,200 I lived in a condo that I thought 613 00:26:52,200 --> 00:26:54,160 was gonna be my forever home. 614 00:26:54,160 --> 00:26:57,800 I had really young twins that were born 615 00:26:57,800 --> 00:26:59,200 while I was living in that condo. 616 00:26:59,200 --> 00:27:02,400 I was the head of the condo association in my development. 617 00:27:02,400 --> 00:27:03,720 It was a small development. 618 00:27:03,720 --> 00:27:08,120 I think we had, I don't know, eight units or so. 619 00:27:08,120 --> 00:27:11,840 And there was a building that was going up next door 620 00:27:11,840 --> 00:27:13,680 that was going to be adjoining, 621 00:27:13,680 --> 00:27:16,040 it was gonna be a joint condo association. 622 00:27:16,040 --> 00:27:17,720 So there's construction going on. 623 00:27:18,920 --> 00:27:23,920 And one day I was curious about the construction. 624 00:27:24,480 --> 00:27:28,400 So I asked the developers, sort of secondhand, 625 00:27:28,400 --> 00:27:31,240 right-hand man, whatever you call him. 626 00:27:31,240 --> 00:27:32,840 I asked him if I could see the plans 627 00:27:32,840 --> 00:27:34,360 for the building next door. 628 00:27:34,360 --> 00:27:37,760 And what I saw was when I looked at the parking lot, 629 00:27:37,760 --> 00:27:42,120 there were two designated wheelchair accessible vehicle 630 00:27:42,120 --> 00:27:44,080 spots in the parking lot. 631 00:27:44,080 --> 00:27:46,840 Now what I didn't know then, and what I know now, 632 00:27:46,840 --> 00:27:48,920 is that parking lots are very, 633 00:27:48,920 --> 00:27:51,800 there are very strict guidelines in Massachusetts 634 00:27:51,800 --> 00:27:55,000 and overall what is required, 635 00:27:55,000 --> 00:27:57,920 the type of slope for wheelchair accessible vehicles 636 00:27:57,920 --> 00:28:00,480 and unloading, the type of safety striping 637 00:28:00,480 --> 00:28:01,560 that a lot of people don't realize 638 00:28:01,560 --> 00:28:03,960 if don't park on the stripes, by the way, 639 00:28:03,960 --> 00:28:06,040 because that's for ramps to let down 640 00:28:06,040 --> 00:28:08,080 and for people to navigate between vehicles 641 00:28:08,080 --> 00:28:09,680 to transfer in and out of their cars, 642 00:28:09,680 --> 00:28:13,160 not for cars to park to just run into CVS for a second. 643 00:28:13,160 --> 00:28:16,200 Don't ever park on the stripes, you will be marked. 644 00:28:17,560 --> 00:28:21,760 So what I found was there were two spots 645 00:28:21,760 --> 00:28:26,680 in this parking lot that hadn't previously been marked, 646 00:28:26,680 --> 00:28:27,920 but all of a sudden on these plans, 647 00:28:27,920 --> 00:28:29,640 they're marked as wheelchair accessible spots. 648 00:28:29,640 --> 00:28:31,120 And I thought, wait a minute, 649 00:28:31,120 --> 00:28:32,520 and the only reason it caught my eye 650 00:28:32,520 --> 00:28:34,960 was because one of those spots was deeded to me. 651 00:28:34,960 --> 00:28:37,640 I bought the condo and I bought the parking spot. 652 00:28:37,640 --> 00:28:39,600 And now this joint association is, 653 00:28:39,600 --> 00:28:42,120 looks like they're commandeering my spot 654 00:28:42,120 --> 00:28:44,080 for wheelchair accessible vehicle. 655 00:28:44,080 --> 00:28:48,120 And I went, wait a minute, this isn't an accessible spot. 656 00:28:48,120 --> 00:28:50,280 You guys are building a parking garage downstairs 657 00:28:50,280 --> 00:28:52,200 under this building, the accessible spot 658 00:28:52,200 --> 00:28:53,440 should be in the parking garage 659 00:28:53,440 --> 00:28:55,600 in a covered location underneath. 660 00:28:55,600 --> 00:28:58,400 The developer said, oh well, we can't 661 00:28:58,400 --> 00:29:02,760 because we're not building the height of the parking garage 662 00:29:02,760 --> 00:29:07,400 won't be the grade that we, by code. 663 00:29:07,400 --> 00:29:09,560 They were deliberately building not to code. 664 00:29:09,560 --> 00:29:12,600 Again, we see expenses, we see people cutting corners, 665 00:29:12,600 --> 00:29:13,680 hoping that they won't get caught 666 00:29:13,680 --> 00:29:16,160 because they think they assume it's gonna be more expensive 667 00:29:16,160 --> 00:29:17,920 or maybe it is going to be more expensive. 668 00:29:17,920 --> 00:29:19,880 And they think, well, we're not gonna really need 669 00:29:19,880 --> 00:29:21,760 the height clearance to be that high. 670 00:29:21,760 --> 00:29:23,720 So what they did was they shortchanged somebody 671 00:29:23,720 --> 00:29:26,280 who needed access to a heated covered area, 672 00:29:26,280 --> 00:29:27,640 safe from the elements. 673 00:29:27,640 --> 00:29:29,960 And they decided to just tack it onto my spot 674 00:29:29,960 --> 00:29:32,080 that I already own and they had no right doing. 675 00:29:32,080 --> 00:29:35,000 So naturally I had to say something about it. 676 00:29:35,000 --> 00:29:37,480 I said, yeah, no, you can't, you have to put it down there. 677 00:29:37,480 --> 00:29:39,040 The job ended up getting shut down 678 00:29:39,040 --> 00:29:40,640 because I called the building department. 679 00:29:40,640 --> 00:29:43,320 I said, hey, they're not building the garage to code 680 00:29:43,320 --> 00:29:44,760 and they're taking over my spot. 681 00:29:44,760 --> 00:29:46,880 And the guy next to me who also happened to be 682 00:29:46,880 --> 00:29:49,840 on the board of trustees and was an attorney 683 00:29:49,840 --> 00:29:52,760 and they wouldn't change anything, it got shut down. 684 00:29:52,760 --> 00:29:54,680 Then because it was Thanksgiving, 685 00:29:54,680 --> 00:29:56,840 they didn't want the construction workers 686 00:29:56,840 --> 00:29:58,360 to not have a job. 687 00:29:58,360 --> 00:30:02,080 So they let them continue building this out of code, 688 00:30:02,080 --> 00:30:04,240 brand new construction that was not gonna allow 689 00:30:04,240 --> 00:30:05,720 for wheelchair accessible vehicles 690 00:30:05,720 --> 00:30:08,760 with the height requirement by law. 691 00:30:08,760 --> 00:30:12,080 And the conversation turned into a negotiation 692 00:30:12,080 --> 00:30:15,880 on how could we make these two outdoor spots accessible 693 00:30:17,040 --> 00:30:20,120 and make them the closest accessible entrance to the door. 694 00:30:20,120 --> 00:30:21,840 The whole thing was a disaster. 695 00:30:21,840 --> 00:30:24,120 It led to me filing a complaint 696 00:30:24,120 --> 00:30:27,400 with the Massachusetts architectural access board. 697 00:30:27,400 --> 00:30:31,120 I showed up and successfully argued with, 698 00:30:31,120 --> 00:30:34,880 when Tom was still alive and the whole board argued 699 00:30:34,880 --> 00:30:36,800 on behalf of people with disabilities, 700 00:30:36,800 --> 00:30:38,880 if they should need a parking spot, 701 00:30:38,880 --> 00:30:41,680 they're going to need a covered accessible spot. 702 00:30:41,680 --> 00:30:45,800 And this is not the right situation. 703 00:30:45,800 --> 00:30:47,480 And what we negotiated, 704 00:30:47,480 --> 00:30:52,200 we actually did sort of a mediation negotiation there 705 00:30:52,200 --> 00:30:57,200 where we negotiated moving the two exterior spots 706 00:30:57,240 --> 00:30:58,240 somewhere else. 707 00:30:58,240 --> 00:31:00,600 So my spot and somebody else's spot, 708 00:31:00,600 --> 00:31:03,400 the guy next to me moved out of the parking, 709 00:31:03,400 --> 00:31:04,560 out of those spots. 710 00:31:04,560 --> 00:31:07,600 And they built an independent garage, 711 00:31:07,600 --> 00:31:10,120 an additional garage over those two wheelchair 712 00:31:10,120 --> 00:31:12,440 accessible spots with the appropriate striping 713 00:31:12,440 --> 00:31:14,920 and space between the vehicles and all that. 714 00:31:14,920 --> 00:31:17,320 And then they did a covered walkway to the door, 715 00:31:17,320 --> 00:31:20,480 which was a terrific negotiation. 716 00:31:20,480 --> 00:31:23,160 It should have been that you have developers 717 00:31:23,160 --> 00:31:26,040 that realize the impact on people with disabilities 718 00:31:26,040 --> 00:31:28,320 if they cut corners and try to get away with 719 00:31:28,320 --> 00:31:31,960 building a building that's lower than what's required by law. 720 00:31:31,960 --> 00:31:33,720 But the truth of the matter is a lot of people 721 00:31:33,720 --> 00:31:37,240 don't think about this code until last. 722 00:31:37,240 --> 00:31:39,800 They think, well, no one's going to notice that. 723 00:31:39,800 --> 00:31:41,400 But then you have a lot of people now 724 00:31:41,400 --> 00:31:42,800 are starting to be testers. 725 00:31:42,800 --> 00:31:44,680 They're starting to go around and say, look, 726 00:31:44,680 --> 00:31:47,880 this isn't right and start to report things. 727 00:31:47,880 --> 00:31:51,440 There's a guy right now that's filed over a thousand requests 728 00:31:51,440 --> 00:31:55,040 in the past six months with the architectural access board 729 00:31:55,040 --> 00:31:58,440 on random things, just things that are not compliant, 730 00:31:58,440 --> 00:32:00,240 but just pretty random. 731 00:32:00,240 --> 00:32:04,200 I tend to choose things that have that maximize impact, 732 00:32:04,200 --> 00:32:07,720 like the Children's Hospital parking garage, for example. 733 00:32:07,720 --> 00:32:09,480 They had 20 something spots. 734 00:32:09,480 --> 00:32:11,840 I think it was 23 spots. 735 00:32:11,840 --> 00:32:16,320 They were going to add another deck to their parking garage. 736 00:32:16,320 --> 00:32:19,440 We negotiated for about two years 737 00:32:19,440 --> 00:32:21,680 what should the real number of spots be? 738 00:32:21,680 --> 00:32:25,880 I said 68 or 69 spots, 10% of the total spots 739 00:32:25,880 --> 00:32:28,440 that would be there according to state law, 740 00:32:28,440 --> 00:32:31,320 the access board guidelines, Children's Hospital, 741 00:32:31,320 --> 00:32:32,760 recognizing that some of these spots 742 00:32:32,760 --> 00:32:35,200 would be empty sometimes and that's lost revenue, 743 00:32:35,200 --> 00:32:40,040 presumably wanted 10% or 2% of the spots. 744 00:32:40,040 --> 00:32:42,800 So there was this big back and forth, back and forth. 745 00:32:42,800 --> 00:32:47,560 And finally, they, without talking to me 746 00:32:47,560 --> 00:32:49,560 and a representative from the Boston Center 747 00:32:49,560 --> 00:32:52,040 for Independent Living, who had been successfully, 748 00:32:52,040 --> 00:32:55,360 to that point we thought, advocating for what needed 749 00:32:55,360 --> 00:32:56,800 to change in the parking garage 750 00:32:56,800 --> 00:33:00,120 when they were doing construction and re-striping, 751 00:33:00,120 --> 00:33:03,680 it became another complaint filed with the architectural, 752 00:33:03,680 --> 00:33:05,080 no, I'm sorry, it wasn't that. 753 00:33:05,080 --> 00:33:09,920 It was, what it became was the Children's Hospital 754 00:33:09,920 --> 00:33:12,200 requested a variance without letting us know. 755 00:33:12,200 --> 00:33:14,080 They were requesting to be exempt 756 00:33:14,080 --> 00:33:16,440 from all the wheelchair accessible spots. 757 00:33:16,440 --> 00:33:18,720 And I thought, that's not right 758 00:33:18,720 --> 00:33:21,000 because wheelchair accessible spots, 759 00:33:21,000 --> 00:33:25,760 now that height variance is for transport vans 760 00:33:25,760 --> 00:33:28,520 that are high, like the ride and things that you see 761 00:33:28,520 --> 00:33:32,160 around Boston that are like a Amazon delivery truck style 762 00:33:32,160 --> 00:33:34,480 and other ambulance style vehicles. 763 00:33:34,480 --> 00:33:37,120 And that's, at least that's my understanding. 764 00:33:37,120 --> 00:33:39,400 But the reality is most people who would park 765 00:33:39,400 --> 00:33:40,880 in Children's Hospital parking garage 766 00:33:40,880 --> 00:33:42,800 are going to be using minivans. 767 00:33:42,800 --> 00:33:44,720 And minivans do fit the height requirement. 768 00:33:44,720 --> 00:33:46,640 So rather than Children's Hospital saying, 769 00:33:46,640 --> 00:33:48,640 hey, we want permission because this garage 770 00:33:48,640 --> 00:33:49,840 was built a long time ago 771 00:33:49,840 --> 00:33:51,400 and we can't meet the height requirement. 772 00:33:51,400 --> 00:33:53,360 We don't wanna have to have any van accessible spots 773 00:33:53,360 --> 00:33:56,240 at all because we can't, we just can't fit them. 774 00:33:56,240 --> 00:34:00,320 I showed up as the sole opponent with a representative 775 00:34:00,320 --> 00:34:02,080 from the Boston Center for Independent Living 776 00:34:02,080 --> 00:34:05,760 supporting my testimony with a follow-up letter 777 00:34:05,760 --> 00:34:08,280 stating why the logic was flawed 778 00:34:08,280 --> 00:34:12,840 and why it was critical that we have 779 00:34:12,840 --> 00:34:14,280 the correct number of spots. 780 00:34:14,280 --> 00:34:16,520 It's a medical facility, there's people with disabilities 781 00:34:16,520 --> 00:34:19,160 coming and going, you can't measure it based on 782 00:34:19,160 --> 00:34:21,960 floor area, et cetera, et cetera. 783 00:34:21,960 --> 00:34:24,680 And two weeks later, I get a letter in the mail 784 00:34:24,680 --> 00:34:27,280 could have been a little bit longer than that saying, 785 00:34:28,640 --> 00:34:31,760 here's our decision and the access board 786 00:34:31,760 --> 00:34:36,080 decided in our favor and there are now 68 or 69 spots 787 00:34:36,080 --> 00:34:39,120 representing about 20% of the garage 788 00:34:39,120 --> 00:34:41,240 that are wheelchair accessible spots. 789 00:34:41,240 --> 00:34:45,280 And they had to include the wheelchair, excuse me, 790 00:34:45,280 --> 00:34:49,080 the van accessible spots that they were trying 791 00:34:49,080 --> 00:34:54,080 to get out of and they were trying to not have to do 792 00:34:54,480 --> 00:34:58,000 the van accessible spots and they were required 793 00:34:58,000 --> 00:34:59,800 to do everything except the height clearance 794 00:34:59,800 --> 00:35:00,880 on the type of signage. 795 00:35:00,880 --> 00:35:04,240 So another example of just speak up, 796 00:35:04,240 --> 00:35:05,920 you think you're too small to make a difference, 797 00:35:05,920 --> 00:35:07,920 try being in bed with a mosquito, 798 00:35:07,920 --> 00:35:10,640 you just have to be persistent, you have to be kind, 799 00:35:10,640 --> 00:35:14,600 you have to make compelling arguments that are reasonable 800 00:35:14,600 --> 00:35:19,600 and do it with professionalism and in a way that 801 00:35:21,680 --> 00:35:23,920 the people on the other side of the table 802 00:35:23,920 --> 00:35:27,400 understand the perspective or can empathize 803 00:35:27,400 --> 00:35:30,560 with the perspective of what are the challenges 804 00:35:30,560 --> 00:35:33,040 when someone who has a wheelchair accessible van 805 00:35:33,040 --> 00:35:37,040 or who has an HP placard with maybe a child with autism 806 00:35:37,040 --> 00:35:42,040 who runs a lot and you have to chase a child down 807 00:35:42,760 --> 00:35:45,560 in an active parking lot because you can't get a spot 808 00:35:45,560 --> 00:35:47,360 close to the door in an HP spot 809 00:35:47,360 --> 00:35:48,720 because there aren't enough. 810 00:35:51,520 --> 00:35:54,360 Yeah, it's tough to like when you hear an organization 811 00:35:54,360 --> 00:35:56,920 like Children's that serves so many people with disabilities 812 00:35:56,920 --> 00:36:00,320 being like not super compliant, 813 00:36:00,320 --> 00:36:04,880 it's hard to assume that every business, 814 00:36:04,880 --> 00:36:08,360 if you can't even get the ones that should have 815 00:36:08,360 --> 00:36:11,800 the bandwidth and the understanding to comply, 816 00:36:11,800 --> 00:36:14,600 how are you gonna get all these businesses started 817 00:36:14,600 --> 00:36:17,920 by people who have no experience with disability, 818 00:36:17,920 --> 00:36:22,000 no understanding, no perspective towards it, 819 00:36:22,000 --> 00:36:23,280 how are you gonna get them to comply? 820 00:36:23,280 --> 00:36:25,520 Like digital accessibility is something we've been 821 00:36:25,520 --> 00:36:28,920 looking at a lot recently and I see it kind of, 822 00:36:28,920 --> 00:36:30,960 it's almost like an echo chamber on LinkedIn 823 00:36:30,960 --> 00:36:33,280 where like all these digital accessibility specialists 824 00:36:33,280 --> 00:36:36,920 are griping about overlays, et cetera, 825 00:36:36,920 --> 00:36:38,560 and it's all very well warranted, 826 00:36:38,560 --> 00:36:41,520 but it's like they're just speaking amongst themselves 827 00:36:41,520 --> 00:36:43,800 and I don't know if they're really reaching 828 00:36:43,800 --> 00:36:46,720 the key stakeholders that are gonna have any influence, 829 00:36:46,720 --> 00:36:49,440 but then I read like all the federal government websites 830 00:36:49,440 --> 00:36:51,160 aren't even digitally accessible. 831 00:36:51,160 --> 00:36:53,400 If the government websites can't be digitally accessible, 832 00:36:53,400 --> 00:36:56,440 how are you gonna expect me with a one person team 833 00:36:56,440 --> 00:36:59,840 running a gym to comply with everything 834 00:36:59,840 --> 00:37:02,040 and I have no background in coding, et cetera? 835 00:37:02,040 --> 00:37:05,000 So it does seem like there, you mentioned earlier, 836 00:37:05,000 --> 00:37:07,000 there's such a long way to go. 837 00:37:07,000 --> 00:37:10,040 The advocacy stuff is obviously essential. 838 00:37:11,040 --> 00:37:15,760 Your work in the school that Harper was initially 839 00:37:15,760 --> 00:37:19,160 attempting to go to, Park School versus Dexter Southfield, 840 00:37:19,160 --> 00:37:23,200 what were like kind of key takeaways from that 841 00:37:23,200 --> 00:37:27,640 maybe without having completely stress you out about it? 842 00:37:27,640 --> 00:37:30,200 You've got a kid who would otherwise, 843 00:37:30,200 --> 00:37:33,360 kid with mobility disability entirely, 844 00:37:33,360 --> 00:37:36,960 who would otherwise be qualified to go to a private school 845 00:37:36,960 --> 00:37:39,280 or an independent school as they call them here 846 00:37:39,280 --> 00:37:44,280 and because of her disability, the school did not want her 847 00:37:44,640 --> 00:37:47,280 and so we went back nicely asked a few times 848 00:37:47,280 --> 00:37:50,280 and they just really made it difficult. 849 00:37:50,280 --> 00:37:52,360 They made it very clear they did not want her. 850 00:37:52,360 --> 00:37:55,480 Usually it's fear, sometimes they're worried about cost, 851 00:37:55,480 --> 00:37:57,680 worried about opening the flood gates to other candidates 852 00:37:57,680 --> 00:38:00,000 who would not otherwise be qualified. 853 00:38:00,000 --> 00:38:03,600 That ended up being taken on by the Department of Justice. 854 00:38:03,600 --> 00:38:06,440 The US Attorney's Office opened an investigation into it. 855 00:38:06,440 --> 00:38:08,920 That investigation was a year long. 856 00:38:08,920 --> 00:38:11,640 They concluded that the Park School did in fact discriminate 857 00:38:11,640 --> 00:38:13,560 against a person with a disability. 858 00:38:13,560 --> 00:38:18,560 They created a process that tends to rule out 859 00:38:18,800 --> 00:38:20,160 candidates with disabilities. 860 00:38:20,160 --> 00:38:23,280 They did not give her a fair shake at the admissions process 861 00:38:23,280 --> 00:38:27,640 and there was a settlement agreement that they had to do 862 00:38:27,640 --> 00:38:30,200 with the Department of Justice. 863 00:38:30,200 --> 00:38:33,080 So the takeaway there was what I wanted to do 864 00:38:33,080 --> 00:38:37,080 by going and doing my media tour that I did in concert 865 00:38:37,080 --> 00:38:40,640 with what was happening with the DOJ 866 00:38:40,640 --> 00:38:42,320 was I wanted people to understand 867 00:38:42,320 --> 00:38:44,920 and there were a few different audiences I wanted to get to. 868 00:38:44,920 --> 00:38:48,640 One is I wanted Park School to understand 869 00:38:48,640 --> 00:38:50,640 and be an example for other independent schools 870 00:38:50,640 --> 00:38:53,240 who were participating in discriminatory practices 871 00:38:53,240 --> 00:38:54,720 like Park had. 872 00:38:54,720 --> 00:38:58,400 I wanted them to know what their responsibilities are 873 00:38:58,400 --> 00:39:01,720 under ADA and what their board and their faculty and staff 874 00:39:01,720 --> 00:39:04,280 is responsible for in the admissions process. 875 00:39:04,280 --> 00:39:09,280 And besides that, I wanted people all over the place 876 00:39:09,920 --> 00:39:12,360 to be able to learn from that mistake. 877 00:39:13,320 --> 00:39:15,880 That you can't just say you're too disabled to go here 878 00:39:15,880 --> 00:39:19,360 or imply that by your admissions practices. 879 00:39:19,360 --> 00:39:22,800 I wanted to make sure that parents understood this, 880 00:39:24,240 --> 00:39:28,080 that they have rights as well and that they can apply 881 00:39:28,080 --> 00:39:31,520 for a school for their child with disabilities 882 00:39:31,520 --> 00:39:35,480 and that there are certain things that are required under law 883 00:39:35,480 --> 00:39:37,560 that just because you're a quote private school 884 00:39:37,560 --> 00:39:39,600 doesn't mean you don't have to comply with ADA. 885 00:39:39,600 --> 00:39:43,200 It's a very big misunderstood thing. 886 00:39:43,200 --> 00:39:45,720 If it's private, you're not above the law 887 00:39:45,720 --> 00:39:49,040 of any place that the public can enter. 888 00:39:49,040 --> 00:39:51,840 It's a consider a place of public accommodation. 889 00:39:51,840 --> 00:39:54,400 You're bound by ADA unless you're a religious institution 890 00:39:54,400 --> 00:39:55,960 or a private club, okay? 891 00:39:55,960 --> 00:39:58,320 But a school where people go, you are required 892 00:39:58,320 --> 00:40:01,040 to follow the same laws as if it were in a public school. 893 00:40:01,040 --> 00:40:02,840 And that message was really important. 894 00:40:02,840 --> 00:40:05,040 And then the last message that was important was that 895 00:40:05,040 --> 00:40:07,280 there are people with disabilities 896 00:40:07,280 --> 00:40:09,200 that don't have to stay in public schools 897 00:40:09,200 --> 00:40:11,680 just because they might be eligible for an IEP 898 00:40:11,680 --> 00:40:13,840 or a special services. 899 00:40:13,840 --> 00:40:15,800 They can go to any school of their choice 900 00:40:15,800 --> 00:40:17,520 if they're otherwise qualified to do so. 901 00:40:17,520 --> 00:40:20,240 If not for the disability, would they be able to be 902 00:40:20,240 --> 00:40:23,040 a candidate for that school and find success in that school 903 00:40:23,040 --> 00:40:25,160 with the appropriate tools and supports? 904 00:40:25,160 --> 00:40:29,200 And the answer to that, if it's yes, is I say apply. 905 00:40:29,200 --> 00:40:30,960 Don't think just because you have a disability 906 00:40:30,960 --> 00:40:33,080 that you're stuck in the public school system. 907 00:40:33,080 --> 00:40:34,880 And in my case, it was really easy to see. 908 00:40:34,880 --> 00:40:37,640 I had two siblings that were over at Park School. 909 00:40:37,640 --> 00:40:39,800 And then my other daughter, we just assumed, 910 00:40:39,800 --> 00:40:43,520 oh, my husband went there and everybody's gonna be at Park. 911 00:40:43,520 --> 00:40:44,960 No, Park didn't want that. 912 00:40:44,960 --> 00:40:47,520 So we took everybody out and we went to Dexter Southfield 913 00:40:47,520 --> 00:40:49,320 and she enjoys all the rights and privileges 914 00:40:49,320 --> 00:40:52,640 that any other person who ambulates on two feet enjoys. 915 00:40:52,640 --> 00:40:54,200 And that's the takeaway. 916 00:40:55,760 --> 00:40:56,680 Yeah, absolutely. 917 00:40:57,880 --> 00:41:00,960 And then recently you've been working on 918 00:41:00,960 --> 00:41:03,240 the apartment complex in Boston. 919 00:41:03,240 --> 00:41:04,680 Is it in Mattapan? 920 00:41:04,680 --> 00:41:07,200 No, it's actually in the south end of Boston. 921 00:41:07,200 --> 00:41:08,480 Okay, with the broken elevator. 922 00:41:08,480 --> 00:41:09,320 Yep. 923 00:41:09,320 --> 00:41:11,000 So this is the deal. 924 00:41:11,000 --> 00:41:12,320 The friend that I told you about happens 925 00:41:12,320 --> 00:41:13,160 to live in that building. 926 00:41:13,160 --> 00:41:17,200 So I have visited many times since 2016. 927 00:41:17,200 --> 00:41:19,040 And in the process of visiting, 928 00:41:19,040 --> 00:41:21,160 I've noticed that the elevator breaks down a lot. 929 00:41:21,160 --> 00:41:24,160 And I've made plans with him a lot that have been broken. 930 00:41:24,160 --> 00:41:26,800 Concerts that we've paid lots of money for the tickets. 931 00:41:26,800 --> 00:41:28,520 He can't get out of his apartment. 932 00:41:28,520 --> 00:41:31,080 He couldn't get in to watch the Super Bowl once. 933 00:41:31,080 --> 00:41:32,720 He was trapped outside in the snow. 934 00:41:32,720 --> 00:41:35,640 And I'm thinking, wow, this is a process issue. 935 00:41:35,640 --> 00:41:39,040 And this is a code issue. 936 00:41:39,040 --> 00:41:42,600 So when residents with disabilities are trapped 937 00:41:42,600 --> 00:41:45,960 inside a building or trapped outside of the building, 938 00:41:45,960 --> 00:41:47,880 it's just, there's no excuse for that. 939 00:41:47,880 --> 00:41:51,160 Massachusetts Architectural Access Board, 940 00:41:51,160 --> 00:41:54,880 there's code that says that any accessibility feature 941 00:41:54,880 --> 00:41:57,360 must be in good working order at all times. 942 00:41:57,360 --> 00:42:00,040 And elevators in particular have to stop at every floor. 943 00:42:00,040 --> 00:42:02,360 That's not the case, they're out of compliance. 944 00:42:02,360 --> 00:42:04,120 So that's a point where about two years ago, 945 00:42:04,120 --> 00:42:07,960 I just started saying, I'm gonna just keep track of all this. 946 00:42:07,960 --> 00:42:10,320 And every single time the elevator breaks down 947 00:42:10,320 --> 00:42:11,160 that I'm aware of, 948 00:42:11,160 --> 00:42:12,840 I get to know a lot of residents in the building 949 00:42:12,840 --> 00:42:16,720 and I'm a disability advocate for many of them. 950 00:42:16,720 --> 00:42:20,240 I'm gonna start teaching people what to do 951 00:42:20,240 --> 00:42:22,280 when it breaks down so that there's a paper trail, 952 00:42:22,280 --> 00:42:25,280 that it's well documented, how frequently it breaks down, 953 00:42:25,280 --> 00:42:28,880 what their experience was as a user, as a tenant there, 954 00:42:28,880 --> 00:42:31,760 how quickly it was remedied, 955 00:42:31,760 --> 00:42:35,240 and how long is this lasting before we get a real fix. 956 00:42:35,240 --> 00:42:38,040 And what that led to was last summer, 957 00:42:38,040 --> 00:42:39,800 last summer this elevator broke down 958 00:42:39,800 --> 00:42:43,560 eight out of 10 days, it was out of service. 959 00:42:43,560 --> 00:42:45,080 It was up, it was down, it was up, it was down, 960 00:42:45,080 --> 00:42:46,320 it was not reliable. 961 00:42:46,320 --> 00:42:47,560 So fourth of July weekend, 962 00:42:47,560 --> 00:42:50,080 people who would ordinarily be doing their barbecues, 963 00:42:50,080 --> 00:42:52,160 going to the beach, whatever, couldn't do any of that 964 00:42:52,160 --> 00:42:53,760 because they were afraid to leave their home. 965 00:42:53,760 --> 00:42:55,360 They were afraid they would be trapped outside 966 00:42:55,360 --> 00:42:58,120 and not be able to find an accessible public restroom. 967 00:42:58,120 --> 00:42:59,640 It was a disaster. 968 00:42:59,640 --> 00:43:01,560 At that point, it was go time. 969 00:43:01,560 --> 00:43:06,560 That was when I said, okay, we are going to file a complaint 970 00:43:06,560 --> 00:43:09,920 with the Massachusetts Architectural Access Board 971 00:43:09,920 --> 00:43:13,360 because we had been talking to property management, 972 00:43:13,360 --> 00:43:16,880 filing work orders, trying to get the appropriate upgrades 973 00:43:16,880 --> 00:43:18,780 for a really long time. 974 00:43:18,780 --> 00:43:21,320 And then finally, just get that sense of timing. 975 00:43:21,320 --> 00:43:24,680 And for me, it's sort of intuitive of when it's go time. 976 00:43:24,680 --> 00:43:29,680 I always collaborate as best as whoever's on the other side 977 00:43:30,660 --> 00:43:33,480 of the table will participate in. 978 00:43:33,480 --> 00:43:35,480 I always approach it in a friendly manner. 979 00:43:35,480 --> 00:43:37,080 I always approach it with empathy 980 00:43:37,080 --> 00:43:38,440 and I always approach it from a, 981 00:43:38,440 --> 00:43:41,840 hey, let's do this constructively together 982 00:43:41,840 --> 00:43:43,480 so that it doesn't need to escalate. 983 00:43:43,480 --> 00:43:45,840 And I never threaten escalation or anything like that. 984 00:43:45,840 --> 00:43:48,840 I just say, let's just, I think we can work this out. 985 00:43:48,840 --> 00:43:49,680 Great. 986 00:43:49,680 --> 00:43:51,760 If it's over and over and over again 987 00:43:51,760 --> 00:43:54,520 and you know that it's just not going anywhere, 988 00:43:54,520 --> 00:43:55,800 that's when I say, okay, 989 00:43:55,800 --> 00:43:57,680 it's time to file a formal complaint. 990 00:43:57,680 --> 00:43:58,680 I file the complaint 991 00:43:58,680 --> 00:44:01,340 with the Massachusetts Architectural Access Board. 992 00:44:01,340 --> 00:44:02,480 It can be anybody. 993 00:44:02,480 --> 00:44:03,800 It could be a friend, it could be a neighbor, 994 00:44:03,800 --> 00:44:05,460 it could be a stranger who files that complaint. 995 00:44:05,460 --> 00:44:07,760 It did not have to be a resident of that building. 996 00:44:07,760 --> 00:44:09,200 So I filed the complaint. 997 00:44:09,200 --> 00:44:12,040 I cited two parts of the code that were out of compliance. 998 00:44:12,040 --> 00:44:14,040 And in this case, I would say to listeners, 999 00:44:14,040 --> 00:44:15,280 you don't even need to know the code. 1000 00:44:15,280 --> 00:44:17,100 You just say the elevator repeatedly breaks down. 1001 00:44:17,100 --> 00:44:20,840 It's been six weeks, it's broken down 17 times. 1002 00:44:20,840 --> 00:44:22,920 It can be in layman's terms, that's fine. 1003 00:44:22,920 --> 00:44:24,480 I happen to know the code. 1004 00:44:24,480 --> 00:44:27,040 I filed my complaint. 1005 00:44:28,040 --> 00:44:30,880 The Boston Housing Authority had an opportunity 1006 00:44:30,880 --> 00:44:32,180 to reply to the complaint. 1007 00:44:32,180 --> 00:44:33,840 They were the property managers. 1008 00:44:33,840 --> 00:44:37,200 They replied to the access board 1009 00:44:37,200 --> 00:44:38,600 that they were working on it, 1010 00:44:38,600 --> 00:44:40,160 but it wasn't a real plan. 1011 00:44:40,160 --> 00:44:41,880 They were supposed to give a plan 1012 00:44:41,880 --> 00:44:43,460 to get back in compliance. 1013 00:44:43,460 --> 00:44:46,160 And there were some things that were in that response 1014 00:44:46,160 --> 00:44:48,160 that were false, and I knew they were false. 1015 00:44:48,160 --> 00:44:50,200 So I began a dialogue with the access board, 1016 00:44:50,200 --> 00:44:53,440 and I was providing rebuttal statements, 1017 00:44:53,440 --> 00:44:55,800 emails, supporting information, 1018 00:44:55,800 --> 00:44:57,040 so that the access board, 1019 00:44:57,040 --> 00:44:59,440 when it came time to go to hearing, 1020 00:44:59,440 --> 00:45:00,960 which it did advance to hearing, 1021 00:45:00,960 --> 00:45:05,280 because their response wasn't appropriate, 1022 00:45:05,280 --> 00:45:07,440 it wasn't acceptable to the access board, 1023 00:45:07,440 --> 00:45:09,780 and convincing enough that it was going to be in compliance 1024 00:45:09,780 --> 00:45:11,580 with what they were proposing to do. 1025 00:45:12,760 --> 00:45:14,160 At the time of the complaint, 1026 00:45:15,880 --> 00:45:18,360 we also had media fired up, 1027 00:45:18,360 --> 00:45:22,940 and we had some really great allies in the media. 1028 00:45:22,940 --> 00:45:26,440 If you tell media that you have 12 people 1029 00:45:26,440 --> 00:45:28,500 stranded in a building in public housing, 1030 00:45:28,500 --> 00:45:31,200 this is a BIPOC community, 1031 00:45:31,200 --> 00:45:36,120 this is a community that is at risk, 1032 00:45:36,120 --> 00:45:41,020 medically at risk of food insecurity, at risk. 1033 00:45:41,020 --> 00:45:46,020 There's a lot of potential red flags here, 1034 00:45:46,280 --> 00:45:49,740 and when you talk to the media about people being trapped, 1035 00:45:49,740 --> 00:45:52,480 and in this case, it really felt like they were caged in, 1036 00:45:52,480 --> 00:45:54,720 they were imprisoned in their apartments, 1037 00:45:54,720 --> 00:45:56,480 that's something that the media cares about. 1038 00:45:56,480 --> 00:45:58,640 And so that created a lot of noise. 1039 00:45:58,640 --> 00:46:01,800 At last count, there were 35 media hits 1040 00:46:01,800 --> 00:46:06,240 on this building all over, internet, newspaper, 1041 00:46:06,240 --> 00:46:07,360 it was in the Boston Globe, 1042 00:46:07,360 --> 00:46:09,200 once the Boston Globe picks it up, 1043 00:46:09,200 --> 00:46:13,600 local dailies pick it up, things move, 1044 00:46:13,600 --> 00:46:15,120 and we don't take it back, 1045 00:46:15,120 --> 00:46:16,560 and this ended up national, 1046 00:46:16,560 --> 00:46:20,360 and we had People Magazine had it on their website as well. 1047 00:46:20,360 --> 00:46:23,220 And so that created the noise that allowed us to do 1048 00:46:23,220 --> 00:46:25,580 what I had alluded to earlier, 1049 00:46:25,580 --> 00:46:27,320 which is what is the process? 1050 00:46:27,320 --> 00:46:31,360 The process is identify a person in power, 1051 00:46:31,360 --> 00:46:33,120 and then you identify who are my people, 1052 00:46:33,120 --> 00:46:36,140 and in this case, my people are people with disabilities 1053 00:46:36,140 --> 00:46:37,960 living in this building with a broken elevator 1054 00:46:37,960 --> 00:46:39,400 that's extremely old. 1055 00:46:39,400 --> 00:46:41,380 What would need to change 1056 00:46:41,380 --> 00:46:43,640 in order for this problem to be fixed? 1057 00:46:43,640 --> 00:46:46,140 In my opinion, the elevator would need modernization 1058 00:46:46,140 --> 00:46:48,680 so that it could be brought up to code and be reliable, 1059 00:46:48,680 --> 00:46:51,600 so that people in this building could enjoy quality of life 1060 00:46:51,600 --> 00:46:53,540 like everyone else and be able to freely enter 1061 00:46:53,540 --> 00:46:56,080 and exit their home whenever they choose, 1062 00:46:56,080 --> 00:46:58,760 not just when the elevator is available. 1063 00:46:58,760 --> 00:47:01,920 And so what we did was we created a strategic plan 1064 00:47:01,920 --> 00:47:02,760 to get there. 1065 00:47:02,760 --> 00:47:05,360 We wanted to shift the power from Kenzie Bach, 1066 00:47:05,360 --> 00:47:06,960 the head of the Boston Housing Authority. 1067 00:47:06,960 --> 00:47:09,560 We identified her as the ultimate decision maker. 1068 00:47:09,560 --> 00:47:11,240 We also knew that she had been in the position 1069 00:47:11,240 --> 00:47:12,080 for three months. 1070 00:47:12,080 --> 00:47:14,400 We have plenty of media coverage now. 1071 00:47:14,400 --> 00:47:19,160 She knows about this, and she's in charge. 1072 00:47:19,160 --> 00:47:22,160 She has the ability to make choices and decisions 1073 00:47:22,160 --> 00:47:23,840 to help us fix this. 1074 00:47:23,840 --> 00:47:27,320 And so what we did was our target was 1075 00:47:27,320 --> 00:47:30,080 create an opportunity for the people in the building 1076 00:47:30,080 --> 00:47:33,320 to tell their stories in their own words to the media 1077 00:47:33,320 --> 00:47:35,080 in two to three minutes. 1078 00:47:35,080 --> 00:47:39,480 And so we can allow those stories to become a bigger story. 1079 00:47:39,480 --> 00:47:41,880 And in the process, they've grown their power 1080 00:47:41,880 --> 00:47:44,280 and they've shifted power from the BHA, 1081 00:47:44,280 --> 00:47:46,520 Kenzie Bach in particular, to them. 1082 00:47:47,540 --> 00:47:48,920 And that's what this is about. 1083 00:47:48,920 --> 00:47:50,960 You do it kindly, but then when you can't, 1084 00:47:50,960 --> 00:47:53,320 it's about identifying, well, who is the decision maker? 1085 00:47:53,320 --> 00:47:54,320 Who's the person in power? 1086 00:47:54,320 --> 00:47:56,340 And how are we gonna have these people learn 1087 00:47:56,340 --> 00:47:58,280 how to tell their own stories with their own voice 1088 00:47:58,280 --> 00:48:00,720 in a way that if we do media, 1089 00:48:00,720 --> 00:48:04,840 plus an access board complaint, plus a hearing, 1090 00:48:04,840 --> 00:48:07,680 this is going to lead to modernization of the elevator. 1091 00:48:08,880 --> 00:48:11,280 So I bet you're wondering where this landed. 1092 00:48:13,120 --> 00:48:15,500 The access board has taken it under advisement, 1093 00:48:15,500 --> 00:48:20,400 which they're going to review all of the materials. 1094 00:48:20,400 --> 00:48:22,760 People were allowed to, they extended the window 1095 00:48:22,760 --> 00:48:25,360 of submitting supporting documentation. 1096 00:48:25,360 --> 00:48:26,960 I did show up, I testified, 1097 00:48:26,960 --> 00:48:29,520 I thought my testimony was sound. 1098 00:48:29,520 --> 00:48:30,680 I will add that the attorney 1099 00:48:30,680 --> 00:48:32,480 for the Boston Housing Authority did something 1100 00:48:32,480 --> 00:48:35,600 that was really kind of a great example 1101 00:48:35,600 --> 00:48:38,800 of what not to do if you wanna have an inclusive mindset. 1102 00:48:38,800 --> 00:48:42,720 And that is once I did my, once I led with the testimony 1103 00:48:42,720 --> 00:48:45,220 and was representing as a disability advocate 1104 00:48:45,220 --> 00:48:47,400 the entire building, the attorney, 1105 00:48:47,400 --> 00:48:50,800 instead of counter pointing whatever I said, 1106 00:48:50,800 --> 00:48:53,120 decided to attack my credibility 1107 00:48:53,120 --> 00:48:55,600 and attack the fact that I was not a person 1108 00:48:55,600 --> 00:48:57,660 with a disability and I didn't live in the building. 1109 00:48:57,660 --> 00:49:00,360 So therefore, who am I and why am I testifying? 1110 00:49:00,360 --> 00:49:03,240 And this is a bunch of garbage if nobody at this address 1111 00:49:03,240 --> 00:49:05,480 is even showing up to testify. 1112 00:49:05,480 --> 00:49:06,320 Don't do that. 1113 00:49:07,280 --> 00:49:09,020 Because you're just gonna look like a fool. 1114 00:49:09,020 --> 00:49:10,920 You're gonna look closed minded. 1115 00:49:10,920 --> 00:49:13,720 One, never make assumptions about people's disabilities. 1116 00:49:13,720 --> 00:49:16,560 Like I told you earlier, you're never gonna look at me 1117 00:49:16,560 --> 00:49:18,320 and think she has a disability. 1118 00:49:18,320 --> 00:49:21,140 Two, don't think just because somebody lives in the building, 1119 00:49:21,140 --> 00:49:23,960 they don't have any business or doesn't live in the building 1120 00:49:23,960 --> 00:49:25,420 that they don't have any business in the building. 1121 00:49:25,420 --> 00:49:28,480 As I mentioned earlier, I go to that building all the time. 1122 00:49:28,480 --> 00:49:30,720 I'm a person in the public that comes in. 1123 00:49:30,720 --> 00:49:32,320 So does the Amazon driver. 1124 00:49:32,320 --> 00:49:33,720 So does the mail carrier. 1125 00:49:33,720 --> 00:49:35,680 So do friends and family. 1126 00:49:35,680 --> 00:49:37,520 Friends and family could have disabilities. 1127 00:49:37,520 --> 00:49:39,360 The elderly live in that building. 1128 00:49:39,360 --> 00:49:41,540 When the elevator's down, it affects a lot more people 1129 00:49:41,540 --> 00:49:44,440 than just the 12 people who were trapped in their building. 1130 00:49:44,440 --> 00:49:45,840 Getting prescriptions delivered. 1131 00:49:45,840 --> 00:49:47,920 Amazon drops it down at the bottom of the stairs. 1132 00:49:47,920 --> 00:49:49,360 How is that gonna help? 1133 00:49:49,360 --> 00:49:51,520 If the elevator's down for 15 days, 1134 00:49:51,520 --> 00:49:53,280 they're not gonna find six flights of stairs 1135 00:49:53,280 --> 00:49:55,400 to bring you your pills, right? 1136 00:49:55,400 --> 00:50:00,400 Second, the credibility of anybody isn't that important 1137 00:50:01,620 --> 00:50:04,840 in terms of who you are and what your role is. 1138 00:50:04,840 --> 00:50:07,240 It just matters that you were affected by it. 1139 00:50:07,240 --> 00:50:10,560 So it didn't matter that I wasn't an attorney. 1140 00:50:10,560 --> 00:50:11,960 And that's what she was trying to say. 1141 00:50:11,960 --> 00:50:13,760 Oh, well, you're not an attorney, right, Don? 1142 00:50:13,760 --> 00:50:15,040 And I said, no, I'm not an attorney. 1143 00:50:15,040 --> 00:50:16,720 I'm a disability advocate. 1144 00:50:16,720 --> 00:50:19,720 And I'm representing the people of this address, 1145 00:50:19,720 --> 00:50:22,400 just like you're representing the Boston Housing Authority. 1146 00:50:22,400 --> 00:50:25,700 I'm authorized to speak on their behalf just as you are. 1147 00:50:25,700 --> 00:50:26,540 But that wasn't enough. 1148 00:50:26,540 --> 00:50:27,960 She said, but you're not an attorney, right? 1149 00:50:27,960 --> 00:50:29,320 I said, no, I'm not an attorney. 1150 00:50:29,320 --> 00:50:32,960 But I did study at Harvard Law School, disability law. 1151 00:50:32,960 --> 00:50:35,160 I took some classes as part of a master's program there. 1152 00:50:35,160 --> 00:50:36,400 I didn't go into all the details. 1153 00:50:36,400 --> 00:50:38,640 But I said, no, but I do have a credential. 1154 00:50:38,640 --> 00:50:41,560 I did study disability law in particular. 1155 00:50:41,560 --> 00:50:43,280 Would you like me to go further into that? 1156 00:50:43,280 --> 00:50:46,840 And she shut it down really quickly. 1157 00:50:46,840 --> 00:50:48,000 It doesn't matter. 1158 00:50:48,000 --> 00:50:50,080 I could have not gone to college. 1159 00:50:50,080 --> 00:50:52,400 I may not have graduated from high school. 1160 00:50:52,400 --> 00:50:55,000 The fact of the matter is being an upstander 1161 00:50:55,000 --> 00:50:57,120 isn't about who you are, what experience you have. 1162 00:50:57,120 --> 00:50:59,640 It's just about noticing that there's a problem 1163 00:50:59,640 --> 00:51:01,360 and taking active steps to solve it. 1164 00:51:01,360 --> 00:51:04,040 And there are many ways to solve these problems. 1165 00:51:04,040 --> 00:51:06,400 It doesn't have to be the strategy that I outlined. 1166 00:51:06,400 --> 00:51:09,040 That's just one that I've done many times in the past. 1167 00:51:09,040 --> 00:51:10,440 And I know that it works. 1168 00:51:10,440 --> 00:51:13,880 And it allows me to pivot and shift strategies 1169 00:51:13,880 --> 00:51:16,560 if it's getting better or if it's getting worse. 1170 00:51:16,560 --> 00:51:19,520 You can turn on different levels of juice if you need to. 1171 00:51:19,520 --> 00:51:21,160 And that's, I think, part of the reason 1172 00:51:21,160 --> 00:51:24,560 that I've been able to be effective as an advocate. 1173 00:51:24,560 --> 00:51:27,160 Because this is not angry. 1174 00:51:27,160 --> 00:51:31,400 This is just how do we get to what would solve 1175 00:51:31,400 --> 00:51:33,000 the problem of my people? 1176 00:51:34,320 --> 00:51:36,320 That's one thing I have a little bit of trouble with 1177 00:51:36,320 --> 00:51:38,920 is I never intend to speak on behalf 1178 00:51:38,920 --> 00:51:40,480 of people with disabilities. 1179 00:51:40,480 --> 00:51:43,360 And it's sometimes I see so much like, 1180 00:51:43,360 --> 00:51:45,240 oh, lived experience is essential. 1181 00:51:45,240 --> 00:51:48,120 Lived experience, and I don't have that lived experience. 1182 00:51:48,120 --> 00:51:52,200 But I also don't see anyone else opening a gym 1183 00:51:52,200 --> 00:51:54,840 or doing the leg work that I've done. 1184 00:51:54,840 --> 00:51:57,720 So it's like, I feel qualified in that regard. 1185 00:51:57,720 --> 00:52:00,480 And I feel unqualified in other areas. 1186 00:52:00,480 --> 00:52:04,720 So how do you think people can be advocates or allies 1187 00:52:04,720 --> 00:52:07,360 without maybe that lived experience 1188 00:52:07,360 --> 00:52:09,520 or without a family member with a disability 1189 00:52:09,520 --> 00:52:11,600 and maybe on a smaller scale 1190 00:52:11,600 --> 00:52:13,480 than the projects that you're taking on? 1191 00:52:13,480 --> 00:52:15,640 What can people do to kind of promote 1192 00:52:15,640 --> 00:52:17,360 more inclusive and accessible communities? 1193 00:52:17,360 --> 00:52:20,000 That's a great question as we wind down our time 1194 00:52:20,000 --> 00:52:21,800 because it brings us back to full circle 1195 00:52:21,800 --> 00:52:23,120 how I started the Play Brigade. 1196 00:52:23,120 --> 00:52:24,800 I was exhausted, I was overwhelmed, 1197 00:52:24,800 --> 00:52:26,520 I didn't know what I was doing. 1198 00:52:26,520 --> 00:52:30,520 I hired a child life specialist, 1199 00:52:30,520 --> 00:52:32,600 a person to come in and help me with Harper, 1200 00:52:32,600 --> 00:52:34,840 help her get out into the community. 1201 00:52:34,840 --> 00:52:36,840 And I asked her one question. 1202 00:52:36,840 --> 00:52:38,920 I said, before the end of the day, 1203 00:52:38,920 --> 00:52:41,320 can you please call somebody down the street? 1204 00:52:43,480 --> 00:52:44,840 There's a playground down the street. 1205 00:52:44,840 --> 00:52:46,800 Can you please call, find out who the person 1206 00:52:46,800 --> 00:52:48,720 is in charge of that and see if we can get 1207 00:52:48,720 --> 00:52:49,960 an accessible swing? 1208 00:52:50,800 --> 00:52:53,080 And she said, okay, no problem. 1209 00:52:53,080 --> 00:52:55,360 Then I had my first break that I had in a long time. 1210 00:52:55,360 --> 00:52:57,680 She hung out with Harper for a few hours. 1211 00:52:57,680 --> 00:53:00,240 At the end of the day, she came back to me and said, 1212 00:53:00,240 --> 00:53:05,240 by the way, I called the Department of Parks and Open Space 1213 00:53:07,800 --> 00:53:08,920 for the town. 1214 00:53:08,920 --> 00:53:10,920 I explained the situation. 1215 00:53:10,920 --> 00:53:14,800 She said, okay, great, we'll put a swing there. 1216 00:53:14,800 --> 00:53:16,600 And by the way, we're gonna be renovating 1217 00:53:16,600 --> 00:53:18,160 that playground anyway, 1218 00:53:18,160 --> 00:53:19,880 but we'll get a swing there right away. 1219 00:53:19,880 --> 00:53:22,560 And I went, wow, and that was my opening? 1220 00:53:22,560 --> 00:53:24,920 That's when I went, I didn't ask for enough. 1221 00:53:25,800 --> 00:53:27,760 There could be more, I wanna get involved 1222 00:53:27,760 --> 00:53:28,960 in this playground renovation. 1223 00:53:28,960 --> 00:53:31,680 And that's where the Play Brigade came from, that moment. 1224 00:53:31,680 --> 00:53:34,480 But did my child life specialist know anybody? 1225 00:53:34,480 --> 00:53:35,520 Did she know anything? 1226 00:53:35,520 --> 00:53:36,920 Was she disabled herself? 1227 00:53:36,920 --> 00:53:38,320 Absolutely not. 1228 00:53:38,320 --> 00:53:40,320 She just was a regular person saying, 1229 00:53:40,320 --> 00:53:42,680 I'm gonna just go down the street, I'm an average Joe, 1230 00:53:42,680 --> 00:53:44,560 and I'm just gonna figure it out, right? 1231 00:53:44,560 --> 00:53:46,360 We have to figure it out. 1232 00:53:46,360 --> 00:53:49,200 And if you're compelled to figure it out, 1233 00:53:49,200 --> 00:53:52,040 and you can do something to be an upstander or be an ally, 1234 00:53:52,040 --> 00:53:53,320 I think it's important. 1235 00:53:53,320 --> 00:53:56,440 Don't be fooled into thinking you need some, 1236 00:53:56,440 --> 00:53:59,160 you need to be a part of the community. 1237 00:53:59,160 --> 00:54:02,280 A friend of mine said something to me once. 1238 00:54:02,280 --> 00:54:04,120 We were in a restaurant and he said, 1239 00:54:05,120 --> 00:54:06,920 we should leave soon, I have to use the bathroom, 1240 00:54:06,920 --> 00:54:08,600 and there's a bunch of stuff piled against the door, 1241 00:54:08,600 --> 00:54:09,920 and they're using it as a storage room. 1242 00:54:09,920 --> 00:54:11,320 And I said, well, why don't we say something? 1243 00:54:11,320 --> 00:54:13,400 And he's like, you know what, for you, it's the first time, 1244 00:54:13,400 --> 00:54:14,560 for me, it's the 100th time, 1245 00:54:14,560 --> 00:54:16,440 I just don't wanna deal with that. 1246 00:54:16,440 --> 00:54:18,440 Okay, that sells me something. 1247 00:54:18,440 --> 00:54:20,520 You've been doing this years and years. 1248 00:54:20,520 --> 00:54:22,760 If you're a person with a disability doing this 1249 00:54:22,760 --> 00:54:25,480 for 20 years, you're not gonna be as excited to speak up 1250 00:54:25,480 --> 00:54:28,840 and say they have the same conversation over and over again. 1251 00:54:28,840 --> 00:54:31,480 That's like spouses who don't close the back doors, 1252 00:54:31,480 --> 00:54:33,760 wink, wink, I'm having this conversation. 1253 00:54:33,760 --> 00:54:35,400 It gets frustrating, these little things 1254 00:54:35,400 --> 00:54:37,000 become big things, right? 1255 00:54:37,000 --> 00:54:41,480 And so to that I say, allyship is needed. 1256 00:54:41,480 --> 00:54:43,600 If somebody's listening to this podcast 1257 00:54:43,600 --> 00:54:45,960 and they think they're not the one, guess what? 1258 00:54:45,960 --> 00:54:47,200 They are the one. 1259 00:54:47,200 --> 00:54:48,960 If you notice it, you're the one. 1260 00:54:48,960 --> 00:54:50,880 If you hear a friend or a person that you know 1261 00:54:50,880 --> 00:54:53,920 with a disability mentioning something that's an issue, 1262 00:54:53,920 --> 00:54:55,800 you are the one, right? 1263 00:54:55,800 --> 00:54:56,920 If it's in your heart. 1264 00:54:58,480 --> 00:55:00,360 It doesn't have to come out smoothly. 1265 00:55:00,360 --> 00:55:02,720 You don't have to succeed the first time. 1266 00:55:02,720 --> 00:55:03,920 Just keep pushing at it. 1267 00:55:03,920 --> 00:55:05,360 Think about it as if it were you 1268 00:55:05,360 --> 00:55:08,480 and you wanted to remove an obstacle. 1269 00:55:08,480 --> 00:55:11,560 There's a way to solve problems. 1270 00:55:11,560 --> 00:55:15,120 There's a lot of ways to solve a lot of different problems. 1271 00:55:15,120 --> 00:55:18,280 And I'm asking that the community get creative 1272 00:55:18,280 --> 00:55:21,960 in finding these moments and moving on these moments 1273 00:55:21,960 --> 00:55:25,200 because with every single project 1274 00:55:25,200 --> 00:55:27,360 that I embark on with the Play Brigade, 1275 00:55:28,280 --> 00:55:31,480 like you said in the beginning, it is not for Harper, 1276 00:55:31,480 --> 00:55:34,280 but ultimately it affects the community 1277 00:55:34,280 --> 00:55:36,680 that Harper, my daughter, is in. 1278 00:55:36,680 --> 00:55:38,000 And it sends a ripple. 1279 00:55:38,000 --> 00:55:40,320 It makes a ripple effect that other people notice it. 1280 00:55:40,320 --> 00:55:43,200 I could have built a swing set in my backyard, Brendan. 1281 00:55:43,200 --> 00:55:44,880 I didn't do that. 1282 00:55:44,880 --> 00:55:47,200 I chose a public playground, right? 1283 00:55:47,200 --> 00:55:49,120 I could have kept it quiet and private 1284 00:55:49,120 --> 00:55:51,760 like a lot of people who go into private schools do. 1285 00:55:51,760 --> 00:55:52,760 It stigmatizes. 1286 00:55:52,760 --> 00:55:54,240 It's like, oh, I don't want people to know. 1287 00:55:54,240 --> 00:55:55,600 But instead I blew it up 1288 00:55:55,600 --> 00:55:58,040 and made sure that everybody knew, right? 1289 00:55:58,040 --> 00:56:02,520 And the architectural access board, that's a public hearing. 1290 00:56:02,520 --> 00:56:05,600 And we didn't need media at the access board. 1291 00:56:05,600 --> 00:56:07,320 We needed media in the building 1292 00:56:07,320 --> 00:56:09,560 to tell the story of the people. 1293 00:56:09,560 --> 00:56:11,440 We could have just not done the media 1294 00:56:11,440 --> 00:56:12,840 and gone right to Kenzie Bach. 1295 00:56:12,840 --> 00:56:14,840 But at this point we had asked and asked and asked 1296 00:56:14,840 --> 00:56:15,800 and it wasn't going anywhere. 1297 00:56:15,800 --> 00:56:17,160 So we need to set an example. 1298 00:56:17,160 --> 00:56:18,880 And guess what happened? 1299 00:56:18,880 --> 00:56:22,440 Many, many, many, many complaints were filed for elevators 1300 00:56:22,440 --> 00:56:25,200 with the Massachusetts architectural access board 1301 00:56:25,200 --> 00:56:27,000 after they saw people in the media. 1302 00:56:27,000 --> 00:56:28,840 And then other people were taking action. 1303 00:56:28,840 --> 00:56:30,360 And the access board was like, oh my gosh, 1304 00:56:30,360 --> 00:56:32,520 we have so many elevators on the way right now. 1305 00:56:32,520 --> 00:56:33,360 All at once. 1306 00:56:33,360 --> 00:56:35,920 Well, how do you think that happened? 1307 00:56:35,920 --> 00:56:36,920 And what do you think happens 1308 00:56:36,920 --> 00:56:38,400 when someone gets notification 1309 00:56:38,400 --> 00:56:40,240 that they're the landlord of a building 1310 00:56:40,240 --> 00:56:42,320 or an owner of a building and their elevator's not working 1311 00:56:42,320 --> 00:56:45,160 and the state access board reaches out to you and says, 1312 00:56:45,160 --> 00:56:46,720 you know what, you gotta respond. 1313 00:56:46,720 --> 00:56:49,400 How are you gonna get this compliant? 1314 00:56:49,400 --> 00:56:50,600 And if it's not acceptable, 1315 00:56:50,600 --> 00:56:53,280 you're gonna have to come to a hearing and we could find you 1316 00:56:53,280 --> 00:56:55,560 every single day until you make it compliant. 1317 00:56:55,560 --> 00:56:57,640 Well, that creates action. 1318 00:56:57,640 --> 00:56:58,480 We don't want to be like that. 1319 00:56:58,480 --> 00:57:01,800 There's a lot of good takeaways there across industries too. 1320 00:57:01,800 --> 00:57:06,080 It's not just specific to landlord 1321 00:57:06,080 --> 00:57:08,280 and building ownership and commercial real estate. 1322 00:57:08,280 --> 00:57:10,520 It's really applicable to everything. 1323 00:57:10,520 --> 00:57:13,360 So I feel like we could have talked for hours. 1324 00:57:13,360 --> 00:57:15,240 I had a bunch of topics 1325 00:57:15,240 --> 00:57:18,720 that I could have covered or wanted to cover, 1326 00:57:18,720 --> 00:57:20,280 but this was perfect. 1327 00:57:20,280 --> 00:57:21,640 I think it's different 1328 00:57:21,640 --> 00:57:23,200 because a lot of the conversations we have 1329 00:57:23,200 --> 00:57:25,360 are more fitness and sport related, 1330 00:57:25,360 --> 00:57:27,760 but I think this is an essential piece 1331 00:57:27,760 --> 00:57:29,720 because I ask all the guests, 1332 00:57:29,720 --> 00:57:30,920 what do you think has to be done 1333 00:57:30,920 --> 00:57:33,800 to make fitness environments more accessible? 1334 00:57:33,800 --> 00:57:36,760 I think we touched upon that indirectly 1335 00:57:36,760 --> 00:57:39,160 in a lot of the stories that you shared. 1336 00:57:40,560 --> 00:57:44,000 So hopefully listeners find takeaways there 1337 00:57:44,000 --> 00:57:45,320 and are able to apply them. 1338 00:57:45,320 --> 00:57:46,320 Yeah, I think so. 1339 00:57:46,320 --> 00:57:49,320 And I guess one thing I will say to that is 1340 00:57:50,320 --> 00:57:54,720 people need to be included across all aspects of life. 1341 00:57:54,720 --> 00:57:56,560 When you think about what your day looks like in the morning, 1342 00:57:56,560 --> 00:57:59,760 you may wake up, get out of bed, go to the bathroom. 1343 00:57:59,760 --> 00:58:00,680 You're in a home. 1344 00:58:00,680 --> 00:58:02,200 You're in a home that's accessible to you 1345 00:58:02,200 --> 00:58:03,640 that you can open and close the doors. 1346 00:58:03,640 --> 00:58:05,200 It's a space that's appropriate. 1347 00:58:05,200 --> 00:58:07,840 You've got heat, you've got hot water. 1348 00:58:07,840 --> 00:58:09,360 Then maybe you go out and you go work out 1349 00:58:09,360 --> 00:58:10,280 and you go to the gym. 1350 00:58:10,280 --> 00:58:11,760 Then you go get some food. 1351 00:58:11,760 --> 00:58:12,840 Then you go to your job. 1352 00:58:12,840 --> 00:58:15,400 That's a whole area that we've never touched on, 1353 00:58:15,400 --> 00:58:17,320 but that's huge right now. 1354 00:58:17,320 --> 00:58:19,520 Only 20% of people with disabilities, 1355 00:58:19,520 --> 00:58:23,200 that's a high number, a high estimate employed right now. 1356 00:58:23,200 --> 00:58:28,200 So you gotta think about it as this is a continuum. 1357 00:58:28,240 --> 00:58:30,640 You can't just fix something in one area. 1358 00:58:30,640 --> 00:58:33,680 You have to make sure that the community, 1359 00:58:33,680 --> 00:58:35,880 that this world that we're in, 1360 00:58:35,880 --> 00:58:37,080 that people with disabilities 1361 00:58:37,080 --> 00:58:39,400 feel like they belong there too. 1362 00:58:39,400 --> 00:58:42,920 We are a community that values diversity 1363 00:58:42,920 --> 00:58:46,640 and disability is part of the diversity conversation. 1364 00:58:46,640 --> 00:58:48,960 We do a lot of paying attention 1365 00:58:48,960 --> 00:58:51,480 to a lot of very deserving populations 1366 00:58:51,480 --> 00:58:54,280 who are underserved, but the disability community, 1367 00:58:54,280 --> 00:58:56,480 because it takes so many faces, 1368 00:58:56,480 --> 00:59:01,120 it's difficult to just really focus in one way. 1369 00:59:01,120 --> 00:59:03,120 We really need to do a lot more speaking up 1370 00:59:03,120 --> 00:59:07,480 and helping people take notice of things everywhere. 1371 00:59:07,480 --> 00:59:11,520 Now, look at your gym, look at your place of business. 1372 00:59:11,520 --> 00:59:15,040 If you're a listener, take away from this, wow. 1373 00:59:15,040 --> 00:59:17,400 If I'm a store, is there a spot 1374 00:59:17,400 --> 00:59:18,800 where somebody with a disability 1375 00:59:18,800 --> 00:59:22,400 who maybe is a wheelchair user can roll up to the counter 1376 00:59:22,400 --> 00:59:25,400 and not have to reach up really high to get their muffin 1377 00:59:25,400 --> 00:59:27,760 or sign their credit card check? 1378 00:59:27,760 --> 00:59:29,800 Maybe there's a side table dedicated to that. 1379 00:59:29,800 --> 00:59:33,280 How is my furniture in my waiting area set up? 1380 00:59:33,280 --> 00:59:35,920 Is there a space that somebody can use if they need to, 1381 00:59:35,920 --> 00:59:37,840 if they need to park a wheelchair there? 1382 00:59:37,840 --> 00:59:41,280 You know, what things can you take away 1383 00:59:41,280 --> 00:59:45,000 when you finish listening to this podcast 1384 00:59:45,000 --> 00:59:49,040 and think about what is the world that you're in right now? 1385 00:59:49,040 --> 00:59:51,680 How would it be different if you were a wheelchair user? 1386 00:59:51,680 --> 00:59:54,000 How would you get through your entire day? 1387 00:59:54,000 --> 00:59:56,160 And just kind of mull that over 1388 00:59:56,160 --> 00:59:57,360 and chew on that for a little bit. 1389 00:59:57,360 --> 00:59:59,240 And I guarantee that listeners will come up 1390 00:59:59,240 --> 01:00:02,840 with at least one or two ideas that they could do, 1391 01:00:02,840 --> 01:00:04,280 whether it's rearranging furniture 1392 01:00:04,280 --> 01:00:07,280 or making the door that you're opening less heavy 1393 01:00:07,280 --> 01:00:09,880 by making that adjustment at the top arm there 1394 01:00:09,880 --> 01:00:11,480 so that a wheelchair user can grab it 1395 01:00:11,480 --> 01:00:13,040 and open the door easily. 1396 01:00:13,040 --> 01:00:16,240 There's a lot of work that still needs to be done. 1397 01:00:16,240 --> 01:00:17,680 Yeah, that's kind of a thought experiment 1398 01:00:17,680 --> 01:00:20,960 that we do for races and environments and activities. 1399 01:00:20,960 --> 01:00:23,040 Like if you can't see, can you access? 1400 01:00:23,040 --> 01:00:24,680 If you can't hear, can they access? 1401 01:00:24,680 --> 01:00:26,720 Like if you can't, if they're in a wheelchair, 1402 01:00:26,720 --> 01:00:27,540 can they access? 1403 01:00:27,540 --> 01:00:30,280 So that's just like an easy, easy way to put yourself 1404 01:00:30,280 --> 01:00:33,000 in those positions and make sure 1405 01:00:33,000 --> 01:00:35,200 that you have access points through all that. 1406 01:00:35,200 --> 01:00:37,240 If someone wants to support the Play Brigade, 1407 01:00:37,240 --> 01:00:40,120 either fiscally or in the programs and services 1408 01:00:40,120 --> 01:00:42,720 that you provide, what's the best way for them to do so? 1409 01:00:42,720 --> 01:00:43,840 That's a great question. 1410 01:00:43,840 --> 01:00:44,760 Thanks for asking. 1411 01:00:44,760 --> 01:00:48,600 So if you go to playbrigade.com 1412 01:00:48,600 --> 01:00:50,920 and just visit our website, 1413 01:00:50,920 --> 01:00:53,360 you'll see the donation button right on the website. 1414 01:00:53,360 --> 01:00:57,880 And every year we have a Boston Marathon fundraiser, 1415 01:00:57,880 --> 01:01:00,760 which is happening several months out of the year, 1416 01:01:00,760 --> 01:01:02,520 but you can just donate to the general fund 1417 01:01:02,520 --> 01:01:05,680 and that allows us to do the work that we do every day. 1418 01:01:07,240 --> 01:01:08,080 Awesome. 1419 01:01:08,080 --> 01:01:10,120 Boston Marathon, you guys have a few bibs this year as well, 1420 01:01:10,120 --> 01:01:10,960 right? 1421 01:01:10,960 --> 01:01:12,800 We've got six runners and we also have an athlete 1422 01:01:12,800 --> 01:01:14,520 with a visual disability. 1423 01:01:14,520 --> 01:01:18,680 So she's going to be accompanied by one or two guide runners 1424 01:01:18,680 --> 01:01:20,560 who are training with her right now. 1425 01:01:20,560 --> 01:01:22,800 She also ran the Play Brigade 5K. 1426 01:01:22,800 --> 01:01:24,680 So I met her back in 2016 1427 01:01:24,680 --> 01:01:28,080 when we first launched our racing program. 1428 01:01:28,080 --> 01:01:29,160 Yeah, yeah, awesome. 1429 01:01:29,160 --> 01:01:29,980 Yeah, that's great. 1430 01:01:29,980 --> 01:01:31,660 So playbrigade.com. 1431 01:01:31,660 --> 01:01:34,160 Dawn, thanks for having those conversations. 1432 01:01:34,160 --> 01:01:35,000 I had a hard performing. 1433 01:01:35,000 --> 01:01:35,820 Of course I will. 1434 01:01:35,820 --> 01:01:38,080 Thanks for having me on and call me anytime. 1435 01:01:39,960 --> 01:01:42,320 Thank you for listening to the AdaptX podcast. 1436 01:01:42,320 --> 01:01:44,240 Our effort to amplify the ideas of our guests 1437 01:01:44,240 --> 01:01:46,360 and create more inclusive and accessible industries 1438 01:01:46,360 --> 01:01:49,300 is futile unless these episodes reach a larger audience. 1439 01:01:49,300 --> 01:01:50,840 If you enjoyed our discussion today, 1440 01:01:50,840 --> 01:01:52,380 please leave us a rating or a review 1441 01:01:52,380 --> 01:01:54,320 on whichever platform you use. 1442 01:01:54,320 --> 01:01:56,200 And if you would like to learn more about AdaptX, 1443 01:01:56,200 --> 01:01:58,360 the course that we teach to health and fitness professionals 1444 01:01:58,360 --> 01:02:00,920 and the projects that our organization is working on, 1445 01:02:00,920 --> 01:02:03,080 you can subscribe to our newsletter through our website, 1446 01:02:03,080 --> 01:02:05,480 www.adaptx.org. 1447 01:02:05,480 --> 01:02:31,280 Until next Monday.