1 00:00:00,000 --> 00:00:02,396 I know exactly what you're saying when you 2 00:00:02,548 --> 00:00:04,902 say like when you're sitting at home writing 3 00:00:04,902 --> 00:00:06,949 you're not like, I'm deaf, I'm deaf 4 00:00:06,949 --> 00:00:07,866 I'm deaf, I say the same for me 5 00:00:07,866 --> 00:00:08,784 like when I'm 6 00:00:08,784 --> 00:00:10,197 sitting around doing my makeup 7 00:00:10,197 --> 00:00:13,083 I'm not like ooh I'm blind, I'm blind 8 00:00:13,113 --> 00:00:15,219 Like, I'm not thinking about my 9 00:00:15,219 --> 00:00:17,340 blindness, I'm just living my life 10 00:00:17,340 --> 00:00:19,614 because this is our normal 11 00:00:19,614 --> 00:00:24,955 (Music) 12 00:00:24,956 --> 00:00:27,072 Hello everybody, we are back 13 00:00:27,072 --> 00:00:29,089 with my series , where I sit down 14 00:00:29,089 --> 00:00:30,505 with another person 15 00:00:30,505 --> 00:00:32,039 from the disability community 16 00:00:32,039 --> 00:00:33,855 and we disscuss all things 17 00:00:33,855 --> 00:00:36,022 life and disability related 18 00:00:36,022 --> 00:00:38,439 and this one is probably the 19 00:00:38,439 --> 00:00:41,639 most requested that I've seen. 20 00:00:41,639 --> 00:00:44,646 So we finally have Jessica 21 00:00:44,646 --> 00:00:46,433 and I'm gonna let you say your 22 00:00:46,433 --> 00:00:48,024 last name 23 00:00:48,024 --> 00:00:52,475 (Laughs) Jessica Kellgren-Fozard 24 00:00:52,475 --> 00:00:54,928 It's ok, I know, it's a difficult surname 25 00:00:54,928 --> 00:00:58,311 we literally like went over this before 26 00:00:58,311 --> 00:00:59,611 we started filming 27 00:00:59,611 --> 00:01:00,644 We've just been like talking on 28 00:01:00,644 --> 00:01:01,728 Google Meet 29 00:01:01,728 --> 00:01:04,095 And I was like, practicing the name 30 00:01:04,095 --> 00:01:05,378 and I was like no, you know what, 31 00:01:05,378 --> 00:01:07,228 I got here, I was too deep, 32 00:01:07,228 --> 00:01:08,211 I was like, I'm jumping 33 00:01:08,211 --> 00:01:09,325 out of the pool. 34 00:01:09,325 --> 00:01:11,145 She'll take over. So thank you- 35 00:01:11,145 --> 00:01:13,812 It's ok. It's complex. 36 00:01:13,812 --> 00:01:14,812 The Kellgren bit is Swedish, 37 00:01:14,812 --> 00:01:16,695 the Fozard is my wife's surname, 38 00:01:16,695 --> 00:01:18,661 it's from Normandy, smush it together, 39 00:01:18,661 --> 00:01:20,078 it's complicated for everyone. 40 00:01:20,078 --> 00:01:22,711 Or Jessica Out Of The Closet, 41 00:01:22,711 --> 00:01:25,495 which I think is a brilliant name 42 00:01:25,495 --> 00:01:27,160 because not only are you one of 43 00:01:27,160 --> 00:01:30,357 the most fabulous fashionistas 44 00:01:30,357 --> 00:01:32,128 that I follow on social media, 45 00:01:32,128 --> 00:01:34,611 but you are also in fact out of 46 00:01:34,611 --> 00:01:37,344 the closet, and so I think it's just 47 00:01:37,344 --> 00:01:38,977 such a fun username. 48 00:01:38,977 --> 00:01:41,041 (Laughs) Yeah, 49 00:01:41,041 --> 00:01:42,944 out of the closet in many ways. 50 00:01:42,944 --> 00:01:44,428 Out of the gay closet, out of the 51 00:01:44,428 --> 00:01:46,977 disability closet, just living life open. 52 00:01:46,977 --> 00:01:48,874 That's the way to live life. 53 00:01:48,874 --> 00:01:50,677 Being your best, most authentic, 54 00:01:50,677 --> 00:01:52,960 confident queen self. And that is 55 00:01:52,960 --> 00:01:54,693 exactly what you do. 56 00:01:54,693 --> 00:01:57,010 I watch your videos and I 57 00:01:57,010 --> 00:01:59,027 legitimately laugh out loud. 58 00:01:59,027 --> 00:02:01,360 Like you're one of, not only the most 59 00:02:01,360 --> 00:02:03,193 fashionable people I follow but one of 60 00:02:03,193 --> 00:02:04,889 the funniest people I follow, 61 00:02:04,889 --> 00:02:07,810 and I think that you, just by simply 62 00:02:07,810 --> 00:02:10,760 being you, break so many disability 63 00:02:10,760 --> 00:02:14,205 stereotypes and misconceptions, 64 00:02:14,205 --> 00:02:17,343 and I think it's so fabulous for just- 65 00:02:17,343 --> 00:02:18,577 so thank you for just exisiting 66 00:02:18,577 --> 00:02:19,960 on the internet. 67 00:02:19,960 --> 00:02:22,393 (Laughs) I mean, I could say 68 00:02:22,393 --> 00:02:24,376 the same thing about you, Molly. 69 00:02:24,376 --> 00:02:26,277 I woke up this morning and I was like, 70 00:02:26,277 --> 00:02:28,278 OK, Molly, you have to try to look, like, 71 00:02:28,278 --> 00:02:30,710 a little bit half fabulous 72 00:02:30,710 --> 00:02:32,609 because you're going to be sitting next to 73 00:02:32,609 --> 00:02:34,309 Jessica in a video and it's going 74 00:02:34,309 --> 00:02:35,627 to be embarrassing. 75 00:02:35,627 --> 00:02:38,793 Oh no, I think you are incredibly stylish, 76 00:02:38,793 --> 00:02:40,526 I must say. I always enjoy 77 00:02:40,526 --> 00:02:41,572 your Instagram as well. 78 00:02:41,572 --> 00:02:43,593 Thank you, I appreciate it. 79 00:02:43,593 --> 00:02:46,475 So, I know a ton of my audience 80 00:02:46,475 --> 00:02:48,027 knows and loves your content already 81 00:02:48,027 --> 00:02:50,176 but for those who don't, would you like to 82 00:02:50,176 --> 00:02:52,276 kind of give the brief introduction of who 83 00:02:52,276 --> 00:02:54,059 Jessica is in a nutshell. 84 00:02:54,059 --> 00:02:56,043 My goodness, okay, the elevator pitch 85 00:02:56,043 --> 00:02:58,526 of me, then, I guess. 86 00:02:58,526 --> 00:03:00,577 So, I'm Jessica, I'm a YouTuber, 87 00:03:00,577 --> 00:03:02,609 content creator. I make content that is 88 00:03:02,609 --> 00:03:06,742 generally fun, informative, educational, 89 00:03:06,742 --> 00:03:09,426 amusing, around things that are to do with 90 00:03:09,426 --> 00:03:12,059 disability, chronic illness, and LGBTQ+ 91 00:03:12,059 --> 00:03:15,092 issues. So I have two genetic conditions, 92 00:03:15,092 --> 00:03:16,975 hereditary neuropathy with liability to pressure 93 00:03:16,975 --> 00:03:19,326 palsies, which means that there are gaps 94 00:03:19,326 --> 00:03:22,310 in the myelin sheaths that surround your nerves. 95 00:03:22,310 --> 00:03:24,825 For me that means that I can paralyze 96 00:03:24,825 --> 00:03:27,509 parts of myself, that my nerves are more 97 00:03:27,509 --> 00:03:29,943 easily damaged, which does things like 98 00:03:29,943 --> 00:03:32,559 affect my hearing and I have loss of 99 00:03:32,559 --> 00:03:34,959 vision in one eye because of it, and it 100 00:03:34,959 --> 00:03:37,174 can do things like my hands don't have 101 00:03:37,174 --> 00:03:39,825 any feeling because I paralyzed both of 102 00:03:39,825 --> 00:03:41,691 my arms for a year and a half when I was 103 00:03:41,691 --> 00:03:44,076 a teenager. And they came back to a 104 00:03:44,076 --> 00:03:47,410 certain degree, but they can't now feel 105 00:03:47,410 --> 00:03:49,105 anything, so it's like wearing gloves 106 00:03:49,105 --> 00:03:50,908 all of the time. And I don't get hot and 107 00:03:50,908 --> 00:03:53,142 cold, any of those kinds of things, 108 00:03:53,142 --> 00:03:55,442 or wet. Which is really annoying when 109 00:03:55,442 --> 00:03:57,392 you're trying to hang up the washing, 110 00:03:57,392 --> 00:03:58,443 'cause you're like, is this wet? 111 00:03:58,443 --> 00:04:00,991 Is this dry? Absolutely no idea. 112 00:04:00,991 --> 00:04:02,909 And I end up having to like, press my face 113 00:04:02,909 --> 00:04:05,009 to all of my laundry to see whether it's 114 00:04:05,009 --> 00:04:07,792 dry or not. Very strange thing. 115 00:04:07,792 --> 00:04:10,508 And then you just get a random cheek stain 116 00:04:10,508 --> 00:04:12,225 or random foundation stain on the side 117 00:04:12,225 --> 00:04:13,389 of your white shirt. 118 00:04:13,389 --> 00:04:15,474 I mean, I should add, I only do this when 119 00:04:15,474 --> 00:04:17,974 I'm not wearing makeup. (Laughs) 120 00:04:17,974 --> 00:04:19,158 Pro tip. 121 00:04:19,158 --> 00:04:21,625 And then I also have Ehlers Danlos 122 00:04:21,625 --> 00:04:24,473 Syndrome, which is about my connective 123 00:04:24,473 --> 00:04:26,523 tissue, and means that not only am I 124 00:04:26,523 --> 00:04:30,259 hyper mobile, and very flexible and bendy, 125 00:04:30,259 --> 00:04:32,106 which most people think is like, whoa, 126 00:04:32,106 --> 00:04:34,179 what a great party trick, and it is, 127 00:04:34,179 --> 00:04:36,519 it's a pretty good party trick that I 128 00:04:36,519 --> 00:04:39,051 perhaps overused when I was a child. 129 00:04:39,051 --> 00:04:41,522 I dislocated various things just to prove 130 00:04:41,522 --> 00:04:43,626 to people that I could. Don't do that. 131 00:04:43,626 --> 00:04:45,397 That's a terrible idea. Don't do that. 132 00:04:45,397 --> 00:04:48,815 But it also affects connective tissue in 133 00:04:48,815 --> 00:04:51,223 things like my internal organs, 134 00:04:51,223 --> 00:04:53,397 so I have some issues with my heart, and 135 00:04:53,397 --> 00:04:56,145 I have postural orthostatic tachycardia 136 00:04:56,145 --> 00:04:58,240 syndrome, which comes from that, 137 00:04:58,240 --> 00:05:02,079 which is just a regulating blood pressure 138 00:05:02,079 --> 00:05:07,296 issue, so I faint a lot. And I can't exert 139 00:05:07,296 --> 00:05:10,128 myself too much, basically I go up two 140 00:05:10,128 --> 00:05:12,055 flights of stairs and I'm like, oh gosh, 141 00:05:12,055 --> 00:05:13,571 there's a heart attack coming. 142 00:05:13,571 --> 00:05:15,512 Ok, wonderful, and then I've got to lie 143 00:05:15,512 --> 00:05:17,094 on the floor for half an hour. 144 00:05:17,094 --> 00:05:19,558 And the vintage fashion is just a layer 145 00:05:19,558 --> 00:05:21,894 over the top, just to make everything look 146 00:05:21,894 --> 00:05:22,976 gorgeous while we're here 147 00:05:23,018 --> 00:05:24,243 I think you should 148 00:05:24,243 --> 00:05:25,723 make more fashion content. 149 00:05:25,723 --> 00:05:27,411 I'm putting the pitch in now, 150 00:05:27,411 --> 00:05:28,976 and I think a lot of people 151 00:05:28,976 --> 00:05:30,946 in the comments will agree 152 00:05:30,946 --> 00:05:33,006 that you should have like a whole segment 153 00:05:33,006 --> 00:05:34,789 of your channel devoted to 154 00:05:34,789 --> 00:05:37,929 fashion content because we need that 155 00:05:37,929 --> 00:05:39,729 vintage inspo that you bring. 156 00:05:39,730 --> 00:05:42,250 We need your vintage wisdom. 157 00:05:42,250 --> 00:05:44,366 I was just, like, as we were talking 158 00:05:44,381 --> 00:05:46,071 before we started filming, I was 159 00:05:46,071 --> 00:05:47,451 peppering her with questions 160 00:05:47,451 --> 00:05:48,981 about the vintage fashion scene 161 00:05:48,981 --> 00:05:51,361 because I am fascinated by it 162 00:05:51,361 --> 00:05:52,953 and whenever I've tried to do it, 163 00:05:52,953 --> 00:05:55,819 it has not necessarily panned out 164 00:05:55,819 --> 00:05:58,141 So, I feel like you should make fashion 165 00:05:58,141 --> 00:05:59,990 videos and you know when I started 166 00:05:59,990 --> 00:06:01,350 doing fashion content 167 00:06:01,350 --> 00:06:03,116 it was kind of like a total mistake 168 00:06:03,116 --> 00:06:05,516 I wanted to make one video about, like, 169 00:06:05,516 --> 00:06:07,374 accessibility of online shopping 170 00:06:07,374 --> 00:06:08,102 and that was 171 00:06:08,102 --> 00:06:09,049 supposed to be it. 172 00:06:09,049 --> 00:06:10,832 But people requested me keep doing it 173 00:06:10,832 --> 00:06:11,612 and I was like 174 00:06:11,612 --> 00:06:13,682 "Well, If you want me to feed my addiction 175 00:06:13,682 --> 00:06:15,582 and talk about something I love, 176 00:06:15,582 --> 00:06:17,298 I am happy to do so" 177 00:06:17,298 --> 00:06:19,456 There is people 178 00:06:19,456 --> 00:06:21,796 in the disability activism community 179 00:06:21,796 --> 00:06:24,053 who have been upset by that. 180 00:06:24,053 --> 00:06:27,312 Like, they want me to kind of dedicate 181 00:06:27,312 --> 00:06:28,582 my channel to disability. 182 00:06:29,508 --> 00:06:31,989 And I can understand that, but 183 00:06:31,989 --> 00:06:33,663 to me, I am a human 184 00:06:33,663 --> 00:06:35,718 and disabilities are a very real, 185 00:06:35,718 --> 00:06:37,062 important topic to me 186 00:06:37,062 --> 00:06:38,580 and it affects my life daily, 187 00:06:39,283 --> 00:06:40,884 but so does fashion 188 00:06:40,884 --> 00:06:42,907 and the confidence that fashion gives me! 189 00:06:42,907 --> 00:06:43,975 So does makeup, 190 00:06:43,975 --> 00:06:45,069 so does my guide dog, 191 00:06:45,069 --> 00:06:46,060 so does dating, 192 00:06:46,060 --> 00:06:48,116 so do all these other aspects 193 00:06:48,116 --> 00:06:49,668 and I think it's very important 194 00:06:49,668 --> 00:06:51,739 for us, as a disability community, 195 00:06:51,739 --> 00:06:54,389 to show society the human side 196 00:06:54,389 --> 00:06:56,130 of our day-to-day life 197 00:06:56,130 --> 00:06:58,760 and the very normal, average 198 00:06:58,760 --> 00:07:00,875 human things that we love 199 00:07:00,875 --> 00:07:02,121 and that we partake in. 200 00:07:02,121 --> 00:07:03,911 Of course, of course 201 00:07:03,911 --> 00:07:06,420 I always link this back to 202 00:07:06,420 --> 00:07:07,314 children's books 203 00:07:07,314 --> 00:07:09,166 because I think it's the easiest way 204 00:07:09,166 --> 00:07:11,458 to understand people learning new concepts 205 00:07:11,458 --> 00:07:14,249 So, there are so many children's books 206 00:07:14,249 --> 00:07:16,056 that are about issues. 207 00:07:16,056 --> 00:07:17,114 It's about 208 00:07:17,114 --> 00:07:19,087 "Some people are in wheelchairs" 209 00:07:19,087 --> 00:07:21,563 or "some people have 2 mums" 210 00:07:21,563 --> 00:07:24,115 and kids don't love them. 211 00:07:24,115 --> 00:07:26,416 They don't want to read those books, 212 00:07:26,416 --> 00:07:28,071 because they're very much 213 00:07:28,071 --> 00:07:30,571 focused on this one object that you need 214 00:07:30,571 --> 00:07:32,257 to learn. It's not fun! 215 00:07:32,257 --> 00:07:34,507 Whereas, when they are reading 216 00:07:34,507 --> 00:07:36,442 like a fun, adventure book 217 00:07:36,442 --> 00:07:38,129 where oh, the main character just 218 00:07:38,129 --> 00:07:40,268 happens to have a disability 219 00:07:40,268 --> 00:07:42,499 or just happens to have a different 220 00:07:42,499 --> 00:07:45,110 family setup to the nuclear family. 221 00:07:45,110 --> 00:07:47,164 Then it's more engaging 222 00:07:47,164 --> 00:07:49,564 and they are more willing to learn things 223 00:07:49,564 --> 00:07:51,178 And I know the great things about 224 00:07:51,178 --> 00:07:53,393 having disabled content creators 225 00:07:53,393 --> 00:07:54,679 who are creating content 226 00:07:54,679 --> 00:07:56,718 that isn't just disability focused 227 00:07:56,718 --> 00:07:58,911 is that you are also bringing in people 228 00:07:58,911 --> 00:08:00,619 who wouldn't have necessarily have 229 00:08:00,619 --> 00:08:01,647 clicked on your video, 230 00:08:01,647 --> 00:08:03,125 being like "Ooh, I don't know, 231 00:08:03,125 --> 00:08:04,138 I don't know want to 232 00:08:04,138 --> 00:08:05,218 watch something about 233 00:08:05,218 --> 00:08:05,988 a blind person 234 00:08:05,988 --> 00:08:06,838 because I've never really 235 00:08:06,838 --> 00:08:07,568 met a blind person 236 00:08:07,568 --> 00:08:08,878 and that could be awkward." 237 00:08:08,878 --> 00:08:10,248 But if it's a video where you are 238 00:08:10,248 --> 00:08:11,448 doing something else 239 00:08:11,448 --> 00:08:12,168 and they click in, 240 00:08:12,168 --> 00:08:12,788 they are like 241 00:08:12,788 --> 00:08:14,072 "Well, you know what, 242 00:08:14,072 --> 00:08:15,052 this is actually really interesting! 243 00:08:15,052 --> 00:08:15,882 I'm gonna keep watching her 244 00:08:15,882 --> 00:08:17,562 other videos as well." 245 00:08:17,562 --> 00:08:19,342 And then, it's just a great way 246 00:08:19,342 --> 00:08:21,228 to lead people in, I think 247 00:08:21,228 --> 00:08:23,562 And they start to really be 248 00:08:23,562 --> 00:08:25,249 more involved in the issues, 249 00:08:25,249 --> 00:08:27,369 it's not something that's far away 250 00:08:27,369 --> 00:08:28,939 Now, it's "oh, my favourite 251 00:08:28,939 --> 00:08:30,185 content creator Molly 252 00:08:30,185 --> 00:08:31,682 also happens to have 253 00:08:31,682 --> 00:08:32,590 a disability and 254 00:08:32,590 --> 00:08:34,110 also happens to talk about that. 255 00:08:34,110 --> 00:08:36,091 And now I've learnt things about it" 256 00:08:36,091 --> 00:08:38,061 So I always think that's the best way, 257 00:08:38,061 --> 00:08:39,423 but, actually, Molly, 258 00:08:39,423 --> 00:08:41,233 two birds, one stone, 259 00:08:41,233 --> 00:08:43,497 to do with this fashion thing, 260 00:08:43,497 --> 00:08:44,997 I think the next time you come 261 00:08:44,997 --> 00:08:46,877 to England, I'm gonna have to give you 262 00:08:46,877 --> 00:08:47,797 a vintage makeover. 263 00:08:47,797 --> 00:08:48,505 Oh my gosh, 264 00:08:48,505 --> 00:08:49,694 absolutely!! 265 00:08:49,694 --> 00:08:51,372 Once this whole madness 266 00:08:51,372 --> 00:08:52,788 in this world is done, 267 00:08:52,788 --> 00:08:54,764 and we're all vaccinated, 268 00:08:54,764 --> 00:08:56,331 I'm coming out to England, 269 00:08:56,331 --> 00:08:57,899 so I can finally see my brother 270 00:08:57,899 --> 00:08:58,890 for the first time 271 00:08:58,890 --> 00:09:00,335 in over a year. 272 00:09:00,335 --> 00:09:01,796 AND I can see you 273 00:09:01,796 --> 00:09:03,778 and we are doing the vintage makeover 274 00:09:03,778 --> 00:09:05,539 I'm absolutely holding you to that. 275 00:09:05,539 --> 00:09:07,814 But I could not agree more with 276 00:09:07,814 --> 00:09:08,894 what you've just said. 277 00:09:08,894 --> 00:09:11,204 My favourite thing about what 278 00:09:11,204 --> 00:09:12,504 I do is that I get to 279 00:09:12,504 --> 00:09:14,473 make learning fun for people. 280 00:09:14,473 --> 00:09:16,032 I get to teach 281 00:09:16,032 --> 00:09:18,024 people in a way that entertains them 282 00:09:18,024 --> 00:09:19,894 that truly is the best way to learn. 283 00:09:19,894 --> 00:09:21,696 That's how I always 284 00:09:21,696 --> 00:09:23,363 learned the most growing up 285 00:09:23,363 --> 00:09:24,764 I was never somebody 286 00:09:24,764 --> 00:09:26,774 who could sit in class 287 00:09:26,774 --> 00:09:28,844 and hear you talk to me about something. 288 00:09:28,844 --> 00:09:30,474 I need to be the one 289 00:09:30,474 --> 00:09:32,084 that was getting up and doing it 290 00:09:32,084 --> 00:09:33,614 I was a very kinesthetic learner 291 00:09:33,614 --> 00:09:35,424 I need to be actually doing the thing 292 00:09:35,424 --> 00:09:36,524 and immersed in it 293 00:09:36,524 --> 00:09:38,048 to be able to understand it 294 00:09:38,048 --> 00:09:39,524 and being able to 295 00:09:39,524 --> 00:09:41,939 hopefully be entertaining to people 296 00:09:41,939 --> 00:09:44,802 um, while they- they learn 297 00:09:44,802 --> 00:09:46,295 and open their minds 298 00:09:46,295 --> 00:09:47,672 to new ways of thinking 299 00:09:47,672 --> 00:09:49,046 is so rewarding 300 00:09:49,046 --> 00:09:50,796 so I completely agree with you 301 00:09:50,796 --> 00:09:52,212 And I always say 302 00:09:52,212 --> 00:09:54,212 we talk a lot in the disability community 303 00:09:54,212 --> 00:09:55,182 about the fact that 304 00:09:55,182 --> 00:09:56,631 y'know that we're quite low 305 00:09:56,631 --> 00:09:59,420 on the totem pole of causes 306 00:09:59,420 --> 00:10:01,213 and of things that people care about 307 00:10:01,213 --> 00:10:02,724 and talk about or know about. 308 00:10:02,724 --> 00:10:04,404 You know, you often see those like 309 00:10:04,404 --> 00:10:05,918 "Diversity panels" 310 00:10:05,918 --> 00:10:08,193 and it's like everything is shown 311 00:10:09,536 --> 00:10:10,616 ... except disability. 312 00:10:10,616 --> 00:10:11,804 And we're like "Hey now, 313 00:10:12,514 --> 00:10:13,214 "Hi" 314 00:10:13,214 --> 00:10:15,208 "Where are we at the table" 315 00:10:15,208 --> 00:10:17,275 I think so many different 316 00:10:17,275 --> 00:10:18,970 brands and companies 317 00:10:18,970 --> 00:10:20,740 think that they can kind of get away 318 00:10:20,740 --> 00:10:22,615 doing the absolute least 319 00:10:22,615 --> 00:10:24,635 when it comes to disability representation 320 00:10:24,635 --> 00:10:26,590 Whether that be in adverts 321 00:10:26,590 --> 00:10:28,988 or actually making things accessible. 322 00:10:28,988 --> 00:10:31,427 So many of them think 323 00:10:31,427 --> 00:10:33,217 "Oh, a person in a wheelchair 324 00:10:33,217 --> 00:10:34,399 and we're done. 325 00:10:34,399 --> 00:10:36,058 That's it we've represented every 326 00:10:36,058 --> 00:10:37,188 disabled person, 327 00:10:37,188 --> 00:10:39,547 we've covered everyone's needs, excellent. 328 00:10:39,547 --> 00:10:41,849 Of course our brand is friendly to the 329 00:10:41,849 --> 00:10:43,825 disabled community, we have a ramp!" 330 00:10:43,825 --> 00:10:46,274 And you're like, "Uh-huh, I see. 331 00:10:46,274 --> 00:10:48,954 And how are you helping every other 332 00:10:48,954 --> 00:10:50,582 disabled person?" 333 00:10:50,582 --> 00:10:51,332 Mhm, mhm. 334 00:10:51,332 --> 00:10:53,691 Like, people who use wheelchairs 335 00:10:53,691 --> 00:10:55,780 actually make up quite a small part 336 00:10:55,780 --> 00:10:58,650 of the disability population as a whole. 337 00:10:58,650 --> 00:11:00,779 And, people just cannot get this through 338 00:11:00,779 --> 00:11:02,492 their heads and, of course, having 339 00:11:02,492 --> 00:11:04,430 the disability symbol be a wheelchair, 340 00:11:04,430 --> 00:11:07,970 obviously a very visual way to get that 341 00:11:07,970 --> 00:11:10,400 across very neatly, but it does tend 342 00:11:10,400 --> 00:11:12,931 to make people forget everyone else. 343 00:11:13,577 --> 00:11:15,581 Yes and I- I don't know if this has been 344 00:11:15,581 --> 00:11:17,601 happening in England but over the 345 00:11:17,601 --> 00:11:19,564 last number of years I've been seeing 346 00:11:19,564 --> 00:11:22,672 in North America one change is 347 00:11:22,672 --> 00:11:24,974 certain places are adding other stickers 348 00:11:24,974 --> 00:11:27,188 that represent other disabilities. 349 00:11:27,188 --> 00:11:29,571 Which is nice because for example on 350 00:11:29,571 --> 00:11:33,146 public transit, like a bus, I need to 351 00:11:33,146 --> 00:11:35,374 sit down, it's not a question I need to 352 00:11:35,374 --> 00:11:37,341 be able to sit. Because balance is a 353 00:11:37,341 --> 00:11:39,185 combination, as I'm sure you know as 354 00:11:39,185 --> 00:11:41,081 deaf woman, of ears and eyes. 355 00:11:41,081 --> 00:11:43,039 And so my balance, not being able to see 356 00:11:43,039 --> 00:11:46,049 is quite off. And so standing on a moving 357 00:11:46,049 --> 00:11:48,631 vehicle, even if I'm holding a pole, is 358 00:11:48,631 --> 00:11:51,141 just not really a thing for me. So I need 359 00:11:51,141 --> 00:11:53,781 sit. And so when I get on a bus with my 360 00:11:53,781 --> 00:11:56,493 guide dog, people used to not register 361 00:11:56,493 --> 00:11:58,348 that I was somebody who they needed to 362 00:11:58,348 --> 00:12:00,198 get out of the disability seating for. 363 00:12:00,198 --> 00:12:02,081 Um, so they would just continue to sit 364 00:12:02,081 --> 00:12:04,025 there. But now they've added these 365 00:12:04,025 --> 00:12:06,441 stickers where it's like a man with a cane 366 00:12:06,441 --> 00:12:09,422 a person in a wheelchair and there's 367 00:12:09,422 --> 00:12:11,271 somebody with a walker and I'm like 368 00:12:11,271 --> 00:12:13,708 Thank you for showing multiple visuals 369 00:12:13,708 --> 00:12:15,745 of what somebody who might need to sit in 370 00:12:15,745 --> 00:12:18,152 disability seating could present as. 371 00:12:18,152 --> 00:12:20,358 Yeah, I've definitely seen in the last few 372 00:12:20,358 --> 00:12:22,338 years that kind of not all disabilities 373 00:12:22,338 --> 00:12:25,807 are visible stickers on a lot more things 374 00:12:25,807 --> 00:12:28,585 in public places. And it's so good to see 375 00:12:28,585 --> 00:12:31,742 because I remember when I very first- 376 00:12:31,742 --> 00:12:34,718 so I kind of grew up with a disability 377 00:12:34,718 --> 00:12:37,158 but it wasn't, well I'm not going to say 378 00:12:37,158 --> 00:12:39,332 noticed, but it wasn't diagnosed until 379 00:12:39,332 --> 00:12:42,359 I was 17. And then when I was 17 and I 380 00:12:42,359 --> 00:12:44,360 suddenly had this big health crisis and 381 00:12:44,360 --> 00:12:47,060 very much did need to use, you know, 382 00:12:47,060 --> 00:12:48,837 disabled toilets and I need to have 383 00:12:48,837 --> 00:12:51,767 access to things. I had a lot of issues 384 00:12:51,767 --> 00:12:54,973 with this. Because people were constantly 385 00:12:54,973 --> 00:12:57,138 trying to stop me from using things 386 00:12:57,138 --> 00:12:59,972 saying "Oh that's not for you that's for 387 00:12:59,972 --> 00:13:02,197 disabled people." And I'm like I mean 388 00:13:02,197 --> 00:13:04,910 I am, I don't know what I can do to- 389 00:13:04,910 --> 00:13:07,776 to make this more obvious to people, that 390 00:13:07,776 --> 00:13:09,603 I'm really struggling and things would 391 00:13:09,603 --> 00:13:11,835 help me like this. So it's, it is really 392 00:13:11,835 --> 00:13:15,042 lovely to see now. I worry less about 393 00:13:15,042 --> 00:13:17,239 using disabled toilets in public 394 00:13:17,239 --> 00:13:19,560 when they have a "Not all disabilities 395 00:13:19,560 --> 00:13:22,020 are visible" sticker on them. Because the 396 00:13:22,020 --> 00:13:24,699 dirty jokes I've received coming out of a 397 00:13:24,699 --> 00:13:27,921 disabled toilet on two feet is like, ugh. 398 00:13:27,921 --> 00:13:29,771 Well I think part of the problem with 399 00:13:29,771 --> 00:13:31,846 that too is how many able-bodied people 400 00:13:31,846 --> 00:13:34,597 just do use the toilet for people with a 401 00:13:34,597 --> 00:13:35,337 disability? 402 00:13:36,944 --> 00:13:39,028 Um, so many, so many able bodied people 403 00:13:39,028 --> 00:13:43,028 do use different facilities that are 404 00:13:43,028 --> 00:13:45,603 accessible and designed for people who 405 00:13:45,603 --> 00:13:47,523 actually need them due to a disability. 406 00:13:47,523 --> 00:13:50,069 And, so now I think when people see 407 00:13:50,069 --> 00:13:52,643 somebody presenting as able-bodied, they 408 00:13:52,643 --> 00:13:54,573 just kind of assume they're able-bodied 409 00:13:54,573 --> 00:13:56,553 because of how many able-bodied people do 410 00:13:56,553 --> 00:13:58,433 take advantage of having a little extra 411 00:13:58,433 --> 00:14:01,063 wiggle room in the stall for when they're 412 00:14:01,063 --> 00:14:03,207 pooping and they don't want anyone to hear 413 00:14:03,207 --> 00:14:05,067 it and I'm like that's not what, that's 414 00:14:05,067 --> 00:14:07,027 not what that was for. It's not for all 415 00:14:07,027 --> 00:14:08,777 you extra shopping bags, ma'am. 416 00:14:08,777 --> 00:14:10,857 It's for people who require either the bar 417 00:14:10,857 --> 00:14:13,687 for support, who require the extra room 418 00:14:13,687 --> 00:14:16,417 for a support worker, for a service 419 00:14:16,417 --> 00:14:18,627 animal, for a mobility device. Like 420 00:14:18,627 --> 00:14:21,618 there's many reasons that that exists. 421 00:14:21,618 --> 00:14:23,448 But your extra shopping bags or like 422 00:14:23,448 --> 00:14:26,361 extra room for popping, isn't what it was 423 00:14:26,361 --> 00:14:27,151 for. 424 00:14:27,151 --> 00:14:29,142 The unfortunate thing as well is that 425 00:14:29,142 --> 00:14:31,195 so many places will put their baby 426 00:14:31,195 --> 00:14:33,788 changing facilities into the disabled 427 00:14:33,788 --> 00:14:37,149 toilets. And it's not like a special 428 00:14:37,149 --> 00:14:40,699 um, weighted table it means that you can 429 00:14:40,699 --> 00:14:44,121 anyone larger than a baby. It's literally 430 00:14:44,121 --> 00:14:46,492 just there because they've lumped in 431 00:14:46,492 --> 00:14:48,962 parents, disabled people, sure. You can 432 00:14:48,962 --> 00:14:50,798 use the same facilities, it's fine. 433 00:14:50,798 --> 00:14:52,952 You know, you'll never need more than one 434 00:14:52,952 --> 00:14:55,266 person using it at the same time. And I've 435 00:14:55,266 --> 00:14:57,935 had things where I have walked out of a 436 00:14:57,935 --> 00:15:01,355 disabled toilet and a mother rammed her 437 00:15:01,355 --> 00:15:04,794 buggy into my legs and was like "Oh, not 438 00:15:04,794 --> 00:15:07,643 disabled or with a child then." And I was 439 00:15:07,643 --> 00:15:09,792 like uhhhh... And at the time- 440 00:15:09,792 --> 00:15:12,034 Actually very disabled thank you! 441 00:15:12,034 --> 00:15:14,862 And at the time I mean I was a teenager 442 00:15:14,862 --> 00:15:18,932 and I was too upset to say anything or do 443 00:15:18,932 --> 00:15:22,036 anything. I'd only just been diagnosed 444 00:15:22,036 --> 00:15:24,639 and I was like, oh this label of disabled 445 00:15:24,639 --> 00:15:26,649 do I get to use this? Do I have the right? 446 00:15:26,649 --> 00:15:28,807 Can I stand up to someone and actually 447 00:15:28,807 --> 00:15:31,131 say "Actually I am disabled?" And it 448 00:15:31,131 --> 00:15:34,960 really upset me inside and it was so 449 00:15:34,960 --> 00:15:36,830 heart wrenching. Despite at the time I 450 00:15:36,830 --> 00:15:39,915 had two paralyzed arms. Like, both of my 451 00:15:39,915 --> 00:15:43,081 arms were paralyzed and I needed to use 452 00:15:43,081 --> 00:15:44,971 the disabled toilet because it was the 453 00:15:44,971 --> 00:15:47,731 only way that I could go to the loo. 454 00:15:47,731 --> 00:15:51,051 Um, but for ages after that I would not 455 00:15:51,051 --> 00:15:52,884 without someone else around. 456 00:15:52,884 --> 00:15:54,951 You know, you've mentioned, I've mentioned 457 00:15:54,951 --> 00:15:57,121 that you're deaf, and I think there's a 458 00:15:57,121 --> 00:15:59,917 a lot of stereotypes that come with that. 459 00:15:59,917 --> 00:16:02,179 Just like blindness and people are like 460 00:16:02,179 --> 00:16:04,695 "Blindness, you can't see anything," a lot 461 00:16:04,695 --> 00:16:06,733 of people think being deaf you can't hear 462 00:16:06,733 --> 00:16:09,510 anything. Being deaf you can't speak. 463 00:16:09,510 --> 00:16:12,123 There's a lot of things like that and so 464 00:16:12,123 --> 00:16:14,495 And then you've mentioned you know your 465 00:16:14,495 --> 00:16:16,463 diagnosis or being disabled as a child 466 00:16:16,463 --> 00:16:18,453 and all of these things, but we haven't 467 00:16:18,453 --> 00:16:20,387 actually like dove into it. So for those 468 00:16:20,387 --> 00:16:22,357 of my followers who have never heard your 469 00:16:22,357 --> 00:16:24,437 story could you kind of give a synopsis of 470 00:16:24,437 --> 00:16:26,327 like, if you're comfortable, what your 471 00:16:26,327 --> 00:16:29,227 diagnosis is? I know that uh, things like 472 00:16:29,227 --> 00:16:31,413 EDS can be very hard to diagnose again, 473 00:16:31,413 --> 00:16:34,143 an invisible disability so what was your 474 00:16:34,143 --> 00:16:36,743 diagnosis journey to getting all of- all 475 00:16:36,743 --> 00:16:38,198 of these diagnoses? 476 00:16:38,198 --> 00:16:41,844 Well, with the NHPP, uh, the diagnosis 477 00:16:41,844 --> 00:16:44,754 was sort of straight forward in that it 478 00:16:44,754 --> 00:16:48,071 I'd always struggled with my hands and 479 00:16:48,071 --> 00:16:51,112 feet as a child. And just being kind of 480 00:16:51,112 --> 00:16:52,902 what was called "clumsy" because they 481 00:16:52,902 --> 00:16:55,314 didn't realize that it was because I 482 00:16:55,314 --> 00:16:58,224 couldn't feel what I was touching. And 483 00:16:58,224 --> 00:17:00,210 you don't realize things because you 484 00:17:00,210 --> 00:17:02,080 assume as a child that everyone else is 485 00:17:02,080 --> 00:17:04,471 like this. So I can't feel the front of 486 00:17:04,471 --> 00:17:08,081 my calves because when I was a baby I 487 00:17:08,081 --> 00:17:10,705 crawled around on them and I've never been 488 00:17:10,705 --> 00:17:13,196 able to feel my knees. And I just assumed 489 00:17:13,196 --> 00:17:15,176 no one can feel their knees, right? Like 490 00:17:15,176 --> 00:17:16,966 you can't feel the skin on your knees 491 00:17:16,966 --> 00:17:19,715 that's weird, who can do that? Um, but I 492 00:17:19,715 --> 00:17:21,775 thought this was totally normal til I hit 493 00:17:21,775 --> 00:17:26,863 17 and I was in an exam and I lent on my 494 00:17:26,863 --> 00:17:29,596 elbow for about twenty minutes whilst I 495 00:17:29,596 --> 00:17:32,385 writing. And I got a crick in my neck and 496 00:17:32,385 --> 00:17:35,623 woke up the next morning having paralyzed 497 00:17:35,623 --> 00:17:38,360 my arms. Because this crick in my neck had 498 00:17:38,360 --> 00:17:41,323 been so bad, I'm not helped by the stress 499 00:17:41,323 --> 00:17:43,297 of this exam and the fact I'd been on 500 00:17:43,297 --> 00:17:45,484 crutches for like six months before this 501 00:17:45,484 --> 00:17:49,639 point. Um, and I had paralyzed both of my 502 00:17:49,639 --> 00:17:52,288 arms and they stayed that way for a year 503 00:17:52,288 --> 00:17:55,188 and a half, which was very difficult. And 504 00:17:55,188 --> 00:17:57,138 I got rushed to hospital of course and 505 00:17:57,138 --> 00:17:58,978 they were trying to find out what was 506 00:17:58,978 --> 00:18:01,058 wrong with me, it could have been a stroke 507 00:18:01,058 --> 00:18:02,978 it could have been meningitis. And they 508 00:18:02,978 --> 00:18:04,898 ran all sorts of tests, did all sorts of 509 00:18:04,898 --> 00:18:06,779 things and then ran a genetic screening 510 00:18:06,779 --> 00:18:09,334 and were like "Oh, ah, you're actually 511 00:18:09,334 --> 00:18:12,667 missing a gene." I was like, oh right 512 00:18:12,667 --> 00:18:16,507 goodness. So I'm a mutant, which is great. 513 00:18:16,507 --> 00:18:18,595 Still waiting for my X-men powers. 514 00:18:18,595 --> 00:18:20,765 Fellow mutant here so I'm with you. 515 00:18:20,765 --> 00:18:22,768 There we go, see? Have you got your X-men 516 00:18:22,768 --> 00:18:25,050 powers yet? I'm hoping that mine will kick 517 00:18:25,050 --> 00:18:26,930 in soon. / Not quite yet. / A bit late 518 00:18:26,930 --> 00:18:28,810 you know? / Yeah I think they're in the 519 00:18:28,810 --> 00:18:30,760 mail but you know the mail's been slow lately. 520 00:18:30,760 --> 00:18:32,971 It has. We'll just keep blaming it on the 521 00:18:32,971 --> 00:18:36,593 pandemic. It's fine. It's fine. So that 522 00:18:36,593 --> 00:18:38,373 diagnosis was actually pretty 523 00:18:38,373 --> 00:18:39,903 straightforward because it was 524 00:18:39,903 --> 00:18:42,442 very much, "oh we ran your DNA, cool 525 00:18:42,442 --> 00:18:44,547 you've got this" There we go. 526 00:18:44,547 --> 00:18:47,670 But the EDS was a much harder 527 00:18:47,670 --> 00:18:50,116 diagnosis and funny enough, 528 00:18:50,120 --> 00:18:51,800 actually came from YouTube 529 00:18:51,800 --> 00:18:53,324 and my subscribers. 530 00:18:53,903 --> 00:18:56,483 So I was diagnosed with a thing called 531 00:18:56,483 --> 00:19:00,163 mixed connective tissue disorder. Which 532 00:19:00,163 --> 00:19:03,023 is also about being hyper-mobile 533 00:19:03,023 --> 00:19:05,349 and having collagen that is kind of 534 00:19:05,349 --> 00:19:06,700 too flexible and 535 00:19:06,700 --> 00:19:10,226 it also affects your internal organs, but 536 00:19:10,526 --> 00:19:12,650 there were parts of it that 537 00:19:12,675 --> 00:19:14,755 just didn't- i just didn't fit? 538 00:19:14,755 --> 00:19:16,815 I didn't like tick like all of the boxes? 539 00:19:16,815 --> 00:19:19,182 I ticked quite a few of them and 540 00:19:19,182 --> 00:19:20,903 my doctor was like, "Ah, well. 541 00:19:20,903 --> 00:19:22,912 I don't know, maybe it's cause you've got 542 00:19:22,912 --> 00:19:24,519 that other thing as well. 543 00:19:24,519 --> 00:19:25,948 And you know how doctors don't 544 00:19:25,948 --> 00:19:27,329 really talk to each other 545 00:19:27,329 --> 00:19:29,023 if it's not their specialty. 546 00:19:29,023 --> 00:19:30,612 They're like, "Oh, no, sorry. 547 00:19:30,612 --> 00:19:32,851 I'm very specifically an eye doctor 548 00:19:32,851 --> 00:19:36,101 so I don't talk to the brain doctor." 549 00:19:36,101 --> 00:19:37,885 Like, " Oh, thanks." 550 00:19:37,885 --> 00:19:39,675 But this is all one thing. 551 00:19:39,675 --> 00:19:41,441 It's all in- it's all in my head so 552 00:19:41,441 --> 00:19:43,399 if you could coordinate with each other? 553 00:19:43,399 --> 00:19:44,929 They're like, "Oh, no, no, no." 554 00:19:44,929 --> 00:19:46,869 Not my thing/It's also just one body. 555 00:19:46,869 --> 00:19:49,261 Yeah, yeah. One body. One human. 556 00:19:49,261 --> 00:19:51,287 All works. It's a system. 557 00:19:51,287 --> 00:19:52,287 And they're like, 558 00:19:52,287 --> 00:19:53,827 "No, oh no. Just this one thing" 559 00:19:53,827 --> 00:19:55,221 So they always just kind of 560 00:19:55,221 --> 00:19:56,748 chalked it up to that. 561 00:19:56,748 --> 00:19:58,273 That I had something else and 562 00:19:58,273 --> 00:20:00,073 therefore that's why I didn't really 563 00:20:00,073 --> 00:20:01,993 fit this profile and it was a bit weird 564 00:20:02,008 --> 00:20:04,678 and I talked about it on my YouTube channel 565 00:20:04,678 --> 00:20:06,058 I've got this and this 566 00:20:06,058 --> 00:20:08,030 but then in other videos I'd kind of 567 00:20:08,032 --> 00:20:09,660 talk about what I was struggling with 568 00:20:09,660 --> 00:20:11,570 and then say it's a bit hard because 569 00:20:11,570 --> 00:20:13,960 my doctor says: This doesn't fit the profile. 570 00:20:13,960 --> 00:20:15,870 And people in the comments were like: 571 00:20:15,870 --> 00:20:17,813 "That's probably because you have EDS Jessica." 572 00:20:17,813 --> 00:20:18,960 "Have you got checked?" 573 00:20:18,960 --> 00:20:20,220 "I think you've got EDS Jessica." 574 00:20:20,220 --> 00:20:21,660 "Pretty sure you've got EDS Jessica." 575 00:20:21,660 --> 00:20:22,720 "This is EDS." 576 00:20:22,720 --> 00:20:24,760 And I was like, is it? 577 00:20:24,760 --> 00:20:25,920 My goodness. 578 00:20:25,920 --> 00:20:28,230 So I went to my GP and said 579 00:20:28,230 --> 00:20:30,360 well I didn't say the internet says 580 00:20:30,360 --> 00:20:32,541 I have EDS. I was like: 581 00:20:32,541 --> 00:20:34,892 I just would like to be re-referred 582 00:20:34,892 --> 00:20:37,612 to rheumatology please. 583 00:20:37,612 --> 00:20:39,812 So they could maybe check to see 584 00:20:39,812 --> 00:20:41,482 whether I definitely have this thing 585 00:20:41,482 --> 00:20:42,732 that I was diagnosed with? 586 00:20:42,732 --> 00:20:44,883 Or maybe I have another thing. 587 00:20:44,883 --> 00:20:47,933 Ehlers-Danlos Syndrome? Heard of it? 588 00:20:47,933 --> 00:20:50,993 And my doctor: "Oh well that's not curable, 589 00:20:50,993 --> 00:20:52,773 so I'm not gonna refer you" 590 00:20:52,773 --> 00:20:53,613 What?! 591 00:20:54,569 --> 00:20:56,969 I was like... I'm sorry? 592 00:20:57,279 --> 00:20:59,389 Well we just shouldn't know if we have 593 00:20:59,389 --> 00:21:00,879 uncurable things.Obviously. 594 00:21:00,879 --> 00:21:02,269 What what what?! 595 00:21:02,269 --> 00:21:04,509 And he was like "Yeah they're very busy 596 00:21:04,509 --> 00:21:08,309 So, I'm not gonna refer you for them." 597 00:21:08,309 --> 00:21:09,989 Ok! Right! 598 00:21:09,989 --> 00:21:12,619 So I ended up having to go get a 599 00:21:12,619 --> 00:21:13,769 private diagnosis. 600 00:21:13,769 --> 00:21:17,073 Which, I live in England. We have the NHS. 601 00:21:17,073 --> 00:21:19,993 Doing private healthcare is like 602 00:21:19,993 --> 00:21:22,623 a weirdly out there type of thing. 603 00:21:22,623 --> 00:21:24,153 We don't do that much. 604 00:21:24,153 --> 00:21:27,070 So, I went to get a private diagnosis. 605 00:21:27,070 --> 00:21:29,320 Saw a private rheumatologist who was like: 606 00:21:29,327 --> 00:21:31,397 "Yeah, you've obviously got EDS." 607 00:21:31,397 --> 00:21:33,327 I was like, "Oh! 608 00:21:33,327 --> 00:21:35,717 Ok, well the internet was correct." 609 00:21:35,717 --> 00:21:38,443 See? Sometimes you can listen to the internet. 610 00:21:38,443 --> 00:21:42,173 Ok, that's how my Youtube subscribers 611 00:21:42,173 --> 00:21:44,613 wonderfully diagnosed me. 612 00:21:44,613 --> 00:21:47,930 What a story. I love that for you. 613 00:21:47,930 --> 00:21:50,477 Now do your two diagnoses 614 00:21:50,477 --> 00:21:51,952 often go hand-in-hand 615 00:21:51,952 --> 00:21:54,834 or are they rarely seen together? 616 00:21:54,834 --> 00:21:58,834 According to every doctor I have ever met, 617 00:21:58,834 --> 00:22:02,564 I am the only case of these two things 618 00:22:02,564 --> 00:22:05,804 interracting. Because, HNPP is quite 619 00:22:05,804 --> 00:22:09,804 a rare neurological condition. 620 99:59:59,999 --> 99:59:59,999 And it comes from my father. 621 99:59:59,999 --> 99:59:59,999 And my hyper mobility comes from my mother. 622 99:59:59,999 --> 99:59:59,999 So, I'm just blessed. 623 99:59:59,999 --> 99:59:59,999 What a combo. 624 99:59:59,999 --> 99:59:59,999 What a combo. 625 99:59:59,999 --> 99:59:59,999 Well, it's made quite a wonderful woman. 626 99:59:59,999 --> 99:59:59,999 So, I'm glad we have you. 627 99:59:59,999 --> 99:59:59,999 I'm not glad for your pain. 628 99:59:59,999 --> 99:59:59,999 I'm not glad for what you had to go 629 99:59:59,999 --> 99:59:59,999 through to get here. 630 99:59:59,999 --> 99:59:59,999 But I am glad our community has you, 631 99:59:59,999 --> 99:59:59,999 because we need more people like you. 632 99:59:59,999 --> 99:59:59,999 With such a powerful voice and 633 99:59:59,999 --> 99:59:59,999 a powerful story. 634 99:59:59,999 --> 99:59:59,999 As you've said, you've come out of the 635 99:59:59,999 --> 99:59:59,999 closet twice. 636 99:59:59,999 --> 99:59:59,999 As a disabled woman as well as being gay. 637 99:59:59,999 --> 99:59:59,999 Can you share some of that journey 638 99:59:59,999 --> 99:59:59,999 of intersectionality. Coming to terms 639 99:59:59,999 --> 99:59:59,999 with two different, being apart of two 640 99:59:59,999 --> 99:59:59,999 different minority communities. 641 99:59:59,999 --> 99:59:59,999 So I think I have a very different story 642 99:59:59,999 --> 99:59:59,999 and a very different journey then most 643 99:59:59,999 --> 99:59:59,999 young LGBTQ+ people. 644 99:59:59,999 --> 99:59:59,999 And I think in a way, that my disability 645 99:59:59,999 --> 99:59:59,999 really does play into that. 646 99:59:59,999 --> 99:59:59,999 So, I don't have a coming out story 647 99:59:59,999 --> 99:59:59,999 because I never came out to my parents. 648 99:59:59,999 --> 99:59:59,999 I was just always kind of like: 649 99:59:59,999 --> 99:59:59,999 This is me. This is who I like. 650 99:59:59,999 --> 99:59:59,999 I really like this gal in the X-Men and 651 99:59:59,999 --> 99:59:59,999 we're going to date and I 652 99:59:59,999 --> 99:59:59,999 will marry her one day. 653 99:59:59,999 --> 99:59:59,999 And my parents were like: 654 99:59:59,999 --> 99:59:59,999 "She's animated but you do you." 655 99:59:59,999 --> 99:59:59,999 I'm like: Yeah! 656 99:59:59,999 --> 99:59:59,999 Sp, I think partly my parents 657 99:59:59,999 --> 99:59:59,999 are Quakers. 658 99:59:59,999 --> 99:59:59,999 So they never put any expectations 659 99:59:59,999 --> 99:59:59,999 on me. That I had to be a certain way. 660 99:59:59,999 --> 99:59:59,999 They never said, you know, 661 99:59:59,999 --> 99:59:59,999 "When you grow up and get a husband." 662 99:59:59,999 --> 99:59:59,999 It was always just: 663 99:59:59,999 --> 99:59:59,999 "When you grow up and if you choose 664 99:59:59,999 --> 99:59:59,999 to get married." 665 99:59:59,999 --> 99:59:59,999 I'm like, yeah ok. 666 99:59:59,999 --> 99:59:59,999 So it always felt very open and 667 99:59:59,999 --> 99:59:59,999 like I could kinda share that part of me. 668 99:59:59,999 --> 99:59:59,999 But, being disabled and having that with me 669 99:59:59,999 --> 99:59:59,999 as I was growing up. 670 99:59:59,999 --> 99:59:59,999 Not knowing that I was disabled but knowing 671 99:59:59,999 --> 99:59:59,999 that there was something about my body 672 99:59:59,999 --> 99:59:59,999 that was wrong and people weren't listening to. 673 99:59:59,999 --> 99:59:59,999 Weren't believing in. 674 99:59:59,999 --> 99:59:59,999 Because, my god, when you're a child 675 99:59:59,999 --> 99:59:59,999 and you try to tell adults things, 676 99:59:59,999 --> 99:59:59,999 it can be very difficult to explain 677 99:59:59,999 --> 99:59:59,999 medical conditions because people dont 678 99:59:59,999 --> 99:59:59,999 tend to believe children about these kinds 679 99:59:59,999 --> 99:59:59,999 of things. When you say 680 99:59:59,999 --> 99:59:59,999 you have a headache, they're like, 681 99:59:59,999 --> 99:59:59,999 "Yeah, but you know. Not really. 682 99:59:59,999 --> 99:59:59,999 Cause you're a kid." 683 99:59:59,999 --> 99:59:59,999 Like, no no. 684 99:59:59,999 --> 99:59:59,999 Genuinely, I'm having a migraine 685 99:59:59,999 --> 99:59:59,999 right now. I realize 686 99:59:59,999 --> 99:59:59,999 I'm a child but I'm having a migraine. 687 99:59:59,999 --> 99:59:59,999 And having that to kinda battle agaisnt 688 99:59:59,999 --> 99:59:59,999 and deal with made my sexuality 689 99:59:59,999 --> 99:59:59,999 almost a...it almost became 690 99:59:59,999 --> 99:59:59,999 something that I, of course, 691 99:59:59,999 --> 99:59:59,999 I would just accept it. 692 99:59:59,999 --> 99:59:59,999 Because I had something that was weighing 693 99:59:59,999 --> 99:59:59,999 quite heavily on me and my 694 99:59:59,999 --> 99:59:59,999 sexuality only brought more joy. 695 99:59:59,999 --> 99:59:59,999 It was only, I mean I'm not saying it 696 99:59:59,999 --> 99:59:59,999 brought me joy as in like, 697 99:59:59,999 --> 99:59:59,999 I had lots of girlfriends. 698 99:59:59,999 --> 99:59:59,999 Which I really didn't at all. 699 99:59:59,999 --> 99:59:59,999 But it brought me joy in that, 700 99:59:59,999 --> 99:59:59,999 I would have these beautiful really 701 99:59:59,999 --> 99:59:59,999 close relationships that I would 702 99:59:59,999 --> 99:59:59,999 have this massive crush on an actress 703 99:59:59,999 --> 99:59:59,999 and I get to like, watch her and things. 704 99:59:59,999 --> 99:59:59,999 and feel happy and I was like yeah! 705 99:59:59,999 --> 99:59:59,999 This being gay thing is great! 706 99:59:59,999 --> 99:59:59,999 I love it! 707 99:59:59,999 --> 99:59:59,999 But then the body. 708 99:59:59,999 --> 99:59:59,999 I was like ugh, my body is useless. 709 99:59:59,999 --> 99:59:59,999 But at least I'm gay. 710 99:59:59,999 --> 99:59:59,999 So I've got that going for me. 711 99:59:59,999 --> 99:59:59,999 Yeah, it became more of a saving grace 712 99:59:59,999 --> 99:59:59,999 throughout my teenage years. 713 99:59:59,999 --> 99:59:59,999 Struggling against a body that didn't work 714 99:59:59,999 --> 99:59:59,999 and being told that it should, 715 99:59:59,999 --> 99:59:59,999 being told that I was incorrect on something. 716 99:59:59,999 --> 99:59:59,999 And then having this thing that I was 717 99:59:59,999 --> 99:59:59,999 really sure of and happy with and 718 99:59:59,999 --> 99:59:59,999 quite passionate about. 719 99:59:59,999 --> 99:59:59,999 So, it's definetly a different coming out 720 99:59:59,999 --> 99:59:59,999 then most LGBTQ+ young people 721 99:59:59,999 --> 99:59:59,999 but I, in a way, hope that it's something 722 99:59:59,999 --> 99:59:59,999 that we get more of going forwards. 723 99:59:59,999 --> 99:59:59,999 That it's more accepted. 724 99:59:59,999 --> 99:59:59,999 That children are able to 725 99:59:59,999 --> 99:59:59,999 just speak their minds. 726 99:59:59,999 --> 99:59:59,999 That people can support them. 727 99:59:59,999 --> 99:59:59,999 That's a really beautiful story. Honestly. 728 99:59:59,999 --> 99:59:59,999 You know a lot of my friends growing up 729 99:59:59,999 --> 99:59:59,999 were LGBTQ+ because I was the only 730 99:59:59,999 --> 99:59:59,999 disabled kid and they were the only gay kid, 731 99:59:59,999 --> 99:59:59,999 or the only trans kid, and so y'know we 732 99:59:59,999 --> 99:59:59,999 just were like, "Hey! 733 99:59:59,999 --> 99:59:59,999 You're also different and not like the other 734 99:59:59,999 --> 99:59:59,999 kids in class. We should be friends." 735 99:59:59,999 --> 99:59:59,999 And so I really like hearing your story 736 99:59:59,999 --> 99:59:59,999 because it is very different than what 737 99:59:59,999 --> 99:59:59,999 a lot of my LGBTQ+ friends went through. 738 99:59:59,999 --> 99:59:59,999 There's actually a really big crossover 739 99:59:59,999 --> 99:59:59,999 between the disabled community 740 99:59:59,999 --> 99:59:59,999 and the LGBTQ+ community. 741 99:59:59,999 --> 99:59:59,999 I think, correct statistic, is that 742 99:59:59,999 --> 99:59:59,999 one third of people who are LGBTQ+ 743 99:59:59,999 --> 99:59:59,999 also have a disability. 744 99:59:59,999 --> 99:59:59,999 Which is a really interesting statistic. 745 99:59:59,999 --> 99:59:59,999 But I think a lot of it has to do with 746 99:59:59,999 --> 99:59:59,999 the fact that you have to come out 747 99:59:59,999 --> 99:59:59,999 about one thing, so you come out about 748 99:59:59,999 --> 99:59:59,999 something else. Like you're more 749 99:59:59,999 --> 99:59:59,999 comfortable with the other thing and 750 99:59:59,999 --> 99:59:59,999 you're like, "Look, let me just 751 99:59:59,999 --> 99:59:59,999 put this out here. You can all clearly see 752 99:59:59,999 --> 99:59:59,999 that I am disabled, so while I'm here, 753 99:59:59,999 --> 99:59:59,999 I'm gay too." 754 99:59:59,999 --> 99:59:59,999 Well yeah! It's like you already have this 755 99:59:59,999 --> 99:59:59,999 big thing to accept about yourself. 756 99:59:59,999 --> 99:59:59,999 You already have this big target on your 757 99:59:59,999 --> 99:59:59,999 back or you know a community runt 758 99:59:59,999 --> 99:59:59,999 so you're like, ok well, I've got one 759 99:59:59,999 --> 99:59:59,999 thing here's the other. 760 99:59:59,999 --> 99:59:59,999 So I can see that statistic being true 761 99:59:59,999 --> 99:59:59,999 honestly because, as I said, some of my 762 99:59:59,999 --> 99:59:59,999 friends are LGBTQ+ and I'm disabled 763 99:59:59,999 --> 99:59:59,999 so I kinda do have a lot of friends in 764 99:59:59,999 --> 99:59:59,999 both worlds and I see a lot of that 765 99:59:59,999 --> 99:59:59,999 crossover. I see that now, at this point 766 99:59:59,999 --> 99:59:59,999 in my life, see both communities. 767 99:59:59,999 --> 99:59:59,999 Many people do identify as being 768 99:59:59,999 --> 99:59:59,999 a part of both. 769 99:59:59,999 --> 99:59:59,999 When you met your wife did she know 770 99:59:59,999 --> 99:59:59,999 sign language. 771 99:59:59,999 --> 99:59:59,999 No! (laughs) 772 99:59:59,999 --> 99:59:59,999 She didn't. In fact, I first met my wife, 773 99:59:59,999 --> 99:59:59,999 on our first date, I hadn't told her 774 99:59:59,999 --> 99:59:59,999 anything about my disabilities. 775 99:59:59,999 --> 99:59:59,999 I kind of wanted to see whether she 776 99:59:59,999 --> 99:59:59,999 liked me because I'd been on so many dates 777 99:59:59,999 --> 99:59:59,999 and spent so much time explaining 778 99:59:59,999 --> 99:59:59,999 what's up/ Yup!/ and you never hear from 779 99:59:59,999 --> 99:59:59,999 them again and ugh, it's such a waste of 780 99:59:59,999 --> 99:59:59,999 my time!/ Very much agree! 781 99:59:59,999 --> 99:59:59,999 But then you have to balance it with 782 99:59:59,999 --> 99:59:59,999 do I want to go on a number of dates 783 99:59:59,999 --> 99:59:59,999 or do I want to spend a whole month 784 99:59:59,999 --> 99:59:59,999 talking to someone and then I tell them 785 99:59:59,999 --> 99:59:59,999 and they're like, "Oh, I can't redo that?" 786 99:59:59,999 --> 99:59:59,999 And then you're like, "Ugh! Well I 787 99:59:59,999 --> 99:59:59,999 just wasted my month of talking to you. 788 99:59:59,999 --> 99:59:59,999 What a waste of time!" 789 99:59:59,999 --> 99:59:59,999 So when she first came up 790 99:59:59,999 --> 99:59:59,999 she actually thought that I was wearing a 791 99:59:59,999 --> 99:59:59,999 bluetooth device and if it's working? 792 99:59:59,999 --> 99:59:59,999 Cause she saw my hearing aids and was like 793 99:59:59,999 --> 99:59:59,999 "Oh, she's working hard! Continuing on 794 99:59:59,999 --> 99:59:59,999 with her bluetooth device." 795 99:59:59,999 --> 99:59:59,999 And I think to start with, though I was 796 99:59:59,999 --> 99:59:59,999 a bit rude that I hadn't removed 797 99:59:59,999 --> 99:59:59,999 my headphones. I was like: 798 99:59:59,999 --> 99:59:59,999 "Umm yeah should probably tell you 799 99:59:59,999 --> 99:59:59,999 that I'm deaf." 800 99:59:59,999 --> 99:59:59,999 And so yeah she didn't know anything. 801 99:59:59,999 --> 99:59:59,999 But she was very blasé on our first date 802 99:59:59,999 --> 99:59:59,999 I didn't tell her, you know, 803 99:59:59,999 --> 99:59:59,999 "This is me. I have this disability. 804 99:59:59,999 --> 99:59:59,999 This is how it affects me." 805 99:59:59,999 --> 99:59:59,999 She was like, "Ok. Mmm. Do you still like 806 99:59:59,999 --> 99:59:59,999 to go for walks in the woods?" 807 99:59:59,999 --> 99:59:59,999 "I do." 808 99:59:59,999 --> 99:59:59,999 "Do you still like national trust properties?" 809 99:59:59,999 --> 99:59:59,999 "I do." 810 99:59:59,999 --> 99:59:59,999 And it was just like the basic things that 811 99:59:59,999 --> 99:59:59,999 she needed to know like, "Are you good 812 99:59:59,999 --> 99:59:59,999 around trees?" 813 99:59:59,999 --> 99:59:59,999 "I love trees. It's wonderful." 814 99:59:59,999 --> 99:59:59,999 "Do you love an old property?" 815 99:59:59,999 --> 99:59:59,999 "Love an old property." 816 99:59:59,999 --> 99:59:59,999 "Excellent" 817 99:59:59,999 --> 99:59:59,999 Basics of our marriage, that. 818 99:59:59,999 --> 99:59:59,999 Country girls at heart. 819 99:59:59,999 --> 99:59:59,999 That is actually exactly how a first date 820 99:59:59,999 --> 99:59:59,999 with a disabled person should go. 821 99:59:59,999 --> 99:59:59,999 Word to anybody who ever goes on a date 822 99:59:59,999 --> 99:59:59,999 with a disabled person. 823 99:59:59,999 --> 99:59:59,999 That's how you know it's a good match: 824 99:59:59,999 --> 99:59:59,999 If you're able to be blasé and focus on 825 99:59:59,999 --> 99:59:59,999 the actual parts of them that are human 826 99:59:59,999 --> 99:59:59,999 instead of the disability. Key! 827 99:59:59,999 --> 99:59:59,999 You will win a lot of points with us. 828 99:59:59,999 --> 99:59:59,999 (giggles) 829 99:59:59,999 --> 99:59:59,999 You mentioned something that like 830 99:59:59,999 --> 99:59:59,999 really hit me and maybe we can talk about 831 99:59:59,999 --> 99:59:59,999 it more on the video that we do on your 832 99:59:59,999 --> 99:59:59,999 channel cause this video is already 833 99:59:59,999 --> 99:59:59,999 forever long but it like almost got me 834 99:59:59,999 --> 99:59:59,999 like choked up because when you said it 835 99:59:59,999 --> 99:59:59,999 it resonated with me so hard. 836 99:59:59,999 --> 99:59:59,999 And that is: You look more capable then 837 99:59:59,999 --> 99:59:59,999 you sometimes are.