0:00:00.000,0:00:02.396 I know exactly what you're saying when you 0:00:02.548,0:00:04.902 say like when you're sitting at home writing 0:00:04.902,0:00:06.949 you're not like, I'm deaf, I'm deaf 0:00:06.949,0:00:07.866 I'm deaf, I say the same for me 0:00:07.866,0:00:08.784 like when I'm 0:00:08.784,0:00:10.197 sitting around doing my makeup 0:00:10.197,0:00:13.083 I'm not like ooh I'm blind, I'm blind 0:00:13.113,0:00:15.219 Like, I'm not thinking about my 0:00:15.219,0:00:17.340 blindness, I'm just living my life 0:00:17.340,0:00:19.614 because this is our normal 0:00:19.614,0:00:24.955 (Music) 0:00:24.956,0:00:27.072 Hello everybody, we are back 0:00:27.072,0:00:29.089 with my series , where I sit down 0:00:29.089,0:00:30.505 with another person 0:00:30.505,0:00:32.039 from the disability community 0:00:32.039,0:00:33.855 and we disscuss all things 0:00:33.855,0:00:36.022 life and disability related 0:00:36.022,0:00:38.439 and this one is probably the 0:00:38.439,0:00:41.639 most requested that I've seen. 0:00:41.639,0:00:44.646 So we finally have Jessica 0:00:44.646,0:00:46.433 and I'm gonna let you say your 0:00:46.433,0:00:48.024 last name 0:00:48.024,0:00:52.475 (Laughs) Jessica Kellgren-Fozard 0:00:52.475,0:00:54.928 It's ok, I know, it's a difficult surname 0:00:54.928,0:00:58.311 we literally like went over this before 0:00:58.311,0:00:59.611 we started filming 0:00:59.611,0:01:00.644 We've just been like talking on 0:01:00.644,0:01:01.728 Google Meet 0:01:01.728,0:01:04.095 And I was like, practicing the name 0:01:04.095,0:01:05.378 and I was like no, you know what, 0:01:05.378,0:01:07.228 I got here, I was too deep, 0:01:07.228,0:01:08.211 I was like, I'm jumping 0:01:08.211,0:01:09.325 out of the pool. 0:01:09.325,0:01:11.145 She'll take over. So thank you- 0:01:11.145,0:01:13.812 It's ok. It's complex. 0:01:13.812,0:01:14.812 The Kellgren bit is Swedish, 0:01:14.812,0:01:16.695 the Fozard is my wife's surname, 0:01:16.695,0:01:18.661 it's from Normandy, smush it together, 0:01:18.661,0:01:20.078 it's complicated for everyone. 0:01:20.078,0:01:22.711 Or Jessica Out Of The Closet, 0:01:22.711,0:01:25.495 which I think is a brilliant name 0:01:25.495,0:01:27.160 because not only are you one of 0:01:27.160,0:01:30.357 the most fabulous fashionistas 0:01:30.357,0:01:32.128 that I follow on social media, 0:01:32.128,0:01:34.611 but you are also in fact out of 0:01:34.611,0:01:37.344 the closet, and so I think it's just 0:01:37.344,0:01:38.977 such a fun username. 0:01:38.977,0:01:41.041 (Laughs) Yeah, 0:01:41.041,0:01:42.944 out of the closet in many ways. 0:01:42.944,0:01:44.428 Out of the gay closet, out of the 0:01:44.428,0:01:46.977 disability closet, just living life open. 0:01:46.977,0:01:48.874 That's the way to live life. 0:01:48.874,0:01:50.677 Being your best, most authentic, 0:01:50.677,0:01:52.960 confident queen self. And that is 0:01:52.960,0:01:54.693 exactly what you do. 0:01:54.693,0:01:57.010 I watch your videos and I 0:01:57.010,0:01:59.027 legitimately laugh out loud. 0:01:59.027,0:02:01.360 Like you're one of, not only the most 0:02:01.360,0:02:03.193 fashionable people I follow but one of 0:02:03.193,0:02:04.889 the funniest people I follow, 0:02:04.889,0:02:07.810 and I think that you, just by simply 0:02:07.810,0:02:10.760 being you, break so many disability 0:02:10.760,0:02:14.205 stereotypes and misconceptions, 0:02:14.205,0:02:17.343 and I think it's so fabulous for just- 0:02:17.343,0:02:18.577 so thank you for just exisiting 0:02:18.577,0:02:19.960 on the internet. 0:02:19.960,0:02:22.393 (Laughs) I mean, I could say 0:02:22.393,0:02:24.376 the same thing about you, Molly. 0:02:24.376,0:02:26.277 I woke up this morning and I was like, 0:02:26.277,0:02:28.278 OK, Molly, you have to try to look, like, 0:02:28.278,0:02:30.710 a little bit half fabulous 0:02:30.710,0:02:32.609 because you're going to be sitting next to 0:02:32.609,0:02:34.309 Jessica in a video and it's going 0:02:34.309,0:02:35.627 to be embarrassing. 0:02:35.627,0:02:38.793 Oh no, I think you are incredibly stylish, 0:02:38.793,0:02:40.526 I must say. I always enjoy 0:02:40.526,0:02:41.572 your Instagram as well. 0:02:41.572,0:02:43.593 Thank you, I appreciate it. 0:02:43.593,0:02:46.475 So, I know a ton of my audience 0:02:46.475,0:02:48.027 knows and loves your content already 0:02:48.027,0:02:50.176 but for those who don't, would you like to 0:02:50.176,0:02:52.276 kind of give the brief introduction of who 0:02:52.276,0:02:54.059 Jessica is in a nutshell. 0:02:54.059,0:02:56.043 My goodness, okay, the elevator pitch 0:02:56.043,0:02:58.526 of me, then, I guess. 0:02:58.526,0:03:00.577 So, I'm Jessica, I'm a YouTuber, 0:03:00.577,0:03:02.609 content creator. I make content that is 0:03:02.609,0:03:06.742 generally fun, informative, educational, 0:03:06.742,0:03:09.426 amusing, around things that are to do with 0:03:09.426,0:03:12.059 disability, chronic illness, and LGBTQ+ 0:03:12.059,0:03:15.092 issues. So I have two genetic conditions, 0:03:15.092,0:03:16.975 hereditary neuropathy with liability to pressure 0:03:16.975,0:03:19.326 palsies, which means that there are gaps 0:03:19.326,0:03:22.310 in the myelin sheaths that surround your nerves. 0:03:22.310,0:03:24.825 For me that means that I can paralyze 0:03:24.825,0:03:27.509 parts of myself, that my nerves are more 0:03:27.509,0:03:29.943 easily damaged, which does things like 0:03:29.943,0:03:32.559 affect my hearing and I have loss of 0:03:32.559,0:03:34.959 vision in one eye because of it, and it 0:03:34.959,0:03:37.174 can do things like my hands don't have 0:03:37.174,0:03:39.825 any feeling because I paralyzed both of 0:03:39.825,0:03:41.691 my arms for a year and a half when I was 0:03:41.691,0:03:44.076 a teenager. And they came back to a 0:03:44.076,0:03:47.410 certain degree, but they can't now feel 0:03:47.410,0:03:49.105 anything, so it's like wearing gloves 0:03:49.105,0:03:50.908 all of the time. And I don't get hot and 0:03:50.908,0:03:53.142 cold, any of those kinds of things, 0:03:53.142,0:03:55.442 or wet. Which is really annoying when 0:03:55.442,0:03:57.392 you're trying to hang up the washing, 0:03:57.392,0:03:58.443 'cause you're like, is this wet? 0:03:58.443,0:04:00.991 Is this dry? Absolutely no idea. 0:04:00.991,0:04:02.909 And I end up having to like, press my face 0:04:02.909,0:04:05.009 to all of my laundry to see whether it's 0:04:05.009,0:04:07.792 dry or not. Very strange thing. 0:04:07.792,0:04:10.508 And then you just get a random cheek stain 0:04:10.508,0:04:12.225 or random foundation stain on the side 0:04:12.225,0:04:13.389 of your white shirt. 0:04:13.389,0:04:15.474 I mean, I should add, I only do this when 0:04:15.474,0:04:17.974 I'm not wearing makeup. (Laughs) 0:04:17.974,0:04:19.158 Pro tip. 0:04:19.158,0:04:21.625 And then I also have Ehlers Danlos 0:04:21.625,0:04:24.473 Syndrome, which is about my connective 0:04:24.473,0:04:26.523 tissue, and means that not only am I 0:04:26.523,0:04:30.259 hyper mobile, and very flexible and bendy, 0:04:30.259,0:04:32.106 which most people think is like, whoa, 0:04:32.106,0:04:34.179 what a great party trick, and it is, 0:04:34.179,0:04:36.519 it's a pretty good party trick that I 0:04:36.519,0:04:39.051 perhaps overused when I was a child. 0:04:39.051,0:04:41.522 I dislocated various things just to prove 0:04:41.522,0:04:43.626 to people that I could. Don't do that. 0:04:43.626,0:04:45.397 That's a terrible idea. Don't do that. 0:04:45.397,0:04:48.815 But it also affects connective tissue in 0:04:48.815,0:04:51.223 things like my internal organs, 0:04:51.223,0:04:53.397 so I have some issues with my heart, and 0:04:53.397,0:04:56.145 I have postural orthostatic tachycardia 0:04:56.145,0:04:58.240 syndrome, which comes from that, 0:04:58.240,0:05:02.079 which is just a regulating blood pressure 0:05:02.079,0:05:07.296 issue, so I faint a lot. And I can't exert 0:05:07.296,0:05:10.128 myself too much, basically I go up two 0:05:10.128,0:05:12.055 flights of stairs and I'm like, oh gosh, 0:05:12.055,0:05:13.571 there's a heart attack coming. 0:05:13.571,0:05:15.512 Ok, wonderful, and then I've got to lie 0:05:15.512,0:05:17.094 on the floor for half an hour. 0:05:17.094,0:05:19.558 And the vintage fashion is just a layer 0:05:19.558,0:05:21.894 over the top, just to make everything look 0:05:21.894,0:05:22.976 gorgeous while we're here 0:05:23.018,0:05:24.243 I think you should 0:05:24.243,0:05:25.723 make more fashion content. 0:05:25.723,0:05:27.411 I'm putting the pitch in now, 0:05:27.411,0:05:28.976 and I think a lot of people 0:05:28.976,0:05:30.946 in the comments will agree 0:05:30.946,0:05:33.006 that you should have like a whole segment 0:05:33.006,0:05:34.789 of your channel devoted to 0:05:34.789,0:05:37.929 fashion content because we need that 0:05:37.929,0:05:39.729 vintage inspo that you bring. 0:05:39.730,0:05:42.250 We need your vintage wisdom. 0:05:42.250,0:05:44.366 I was just, like, as we were talking 0:05:44.381,0:05:46.071 before we started filming, I was 0:05:46.071,0:05:47.451 peppering her with questions 0:05:47.451,0:05:48.981 about the vintage fashion scene 0:05:48.981,0:05:51.361 because I am fascinated by it 0:05:51.361,0:05:52.953 and whenever I've tried to do it, 0:05:52.953,0:05:55.819 it has not necessarily panned out 0:05:55.819,0:05:58.141 So, I feel like you should make fashion 0:05:58.141,0:05:59.990 videos and you know when I started 0:05:59.990,0:06:01.350 doing fashion content 0:06:01.350,0:06:03.116 it was kind of like a total mistake 0:06:03.116,0:06:05.516 I wanted to make one video about, like, 0:06:05.516,0:06:07.374 accessibility of online shopping 0:06:07.374,0:06:08.102 and that was 0:06:08.102,0:06:09.049 supposed to be it. 0:06:09.049,0:06:10.832 But people requested me keep doing it 0:06:10.832,0:06:11.612 and I was like 0:06:11.612,0:06:13.682 "Well, If you want me to feed my addiction 0:06:13.682,0:06:15.582 and talk about something I love, 0:06:15.582,0:06:17.298 I am happy to do so" 0:06:17.298,0:06:19.456 There is people 0:06:19.456,0:06:21.796 in the disability activism community 0:06:21.796,0:06:24.053 who have been upset by that. 0:06:24.053,0:06:27.312 Like, they want me to kind of dedicate 0:06:27.312,0:06:28.582 my channel to disability. 0:06:29.508,0:06:31.989 And I can understand that, but 0:06:31.989,0:06:33.663 to me, I am a human 0:06:33.663,0:06:35.718 and disabilities are a very real, 0:06:35.718,0:06:37.062 important topic to me 0:06:37.062,0:06:38.580 and it affects my life daily, 0:06:39.283,0:06:40.884 but so does fashion 0:06:40.884,0:06:42.907 and the confidence that fashion gives me! 0:06:42.907,0:06:43.975 So does makeup, 0:06:43.975,0:06:45.069 so does my guide dog, 0:06:45.069,0:06:46.060 so does dating, 0:06:46.060,0:06:48.116 so do all these other aspects 0:06:48.116,0:06:49.668 and I think it's very important 0:06:49.668,0:06:51.739 for us, as a disability community, 0:06:51.739,0:06:54.389 to show society the human side 0:06:54.389,0:06:56.130 of our day-to-day life 0:06:56.130,0:06:58.760 and the very normal, average 0:06:58.760,0:07:00.875 human things that we love 0:07:00.875,0:07:02.121 and that we partake in. 0:07:02.121,0:07:03.911 Of course, of course 0:07:03.911,0:07:06.420 I always link this back to 0:07:06.420,0:07:07.314 children's books 0:07:07.314,0:07:09.166 because I think it's the easiest way 0:07:09.166,0:07:11.458 to understand people learning new concepts 0:07:11.458,0:07:14.249 So, there are so many children's books 0:07:14.249,0:07:16.056 that are about issues. 0:07:16.056,0:07:17.114 It's about 0:07:17.114,0:07:19.087 "Some people are in wheelchairs" 0:07:19.087,0:07:21.563 or "some people have 2 mums" 0:07:21.563,0:07:24.115 and kids don't love them. 0:07:24.115,0:07:26.416 They don't want to read those books, 0:07:26.416,0:07:28.071 because they're very much 0:07:28.071,0:07:30.571 focused on this one object that you need 0:07:30.571,0:07:32.257 to learn. It's not fun! 0:07:32.257,0:07:34.507 Whereas, when they are reading 0:07:34.507,0:07:36.442 like a fun, adventure book 0:07:36.442,0:07:38.129 where oh, the main character just 0:07:38.129,0:07:40.268 happens to have a disability 0:07:40.268,0:07:42.499 or just happens to have a different 0:07:42.499,0:07:45.110 family setup to the nuclear family. 0:07:45.110,0:07:47.164 Then it's more engaging 0:07:47.164,0:07:49.564 and they are more willing to learn things 0:07:49.564,0:07:51.178 And I know the great things about 0:07:51.178,0:07:53.393 having disabled content creators 0:07:53.393,0:07:54.679 who are creating content 0:07:54.679,0:07:56.718 that isn't just disability focused 0:07:56.718,0:07:58.911 is that you are also bringing in people 0:07:58.911,0:08:00.619 who wouldn't have necessarily have 0:08:00.619,0:08:01.647 clicked on your video, 0:08:01.647,0:08:03.125 being like "Ooh, I don't know, 0:08:03.125,0:08:04.138 I don't know want to 0:08:04.138,0:08:05.218 watch something about 0:08:05.218,0:08:05.988 a blind person 0:08:05.988,0:08:06.838 because I've never really 0:08:06.838,0:08:07.568 met a blind person 0:08:07.568,0:08:08.878 and that could be awkward." 0:08:08.878,0:08:10.248 But if it's a video where you are 0:08:10.248,0:08:11.448 doing something else 0:08:11.448,0:08:12.168 and they click in, 0:08:12.168,0:08:12.788 they are like 0:08:12.788,0:08:14.072 "Well, you know what, 0:08:14.072,0:08:15.052 this is actually really interesting! 0:08:15.052,0:08:15.882 I'm gonna keep watching her 0:08:15.882,0:08:17.562 other videos as well." 0:08:17.562,0:08:19.342 And then, it's just a great way 0:08:19.342,0:08:21.228 to lead people in, I think 0:08:21.228,0:08:23.562 And they start to really be 0:08:23.562,0:08:25.249 more involved in the issues, 0:08:25.249,0:08:27.369 it's not something that's far away 0:08:27.369,0:08:28.939 Now, it's "oh, my favourite 0:08:28.939,0:08:30.185 content creator Molly 0:08:30.185,0:08:31.682 also happens to have 0:08:31.682,0:08:32.590 a disability and 0:08:32.590,0:08:34.110 also happens to talk about that. 0:08:34.110,0:08:36.091 And now I've learnt things about it" 0:08:36.091,0:08:38.061 So I always think that's the best way, 0:08:38.061,0:08:39.423 but, actually, Molly, 0:08:39.423,0:08:41.233 two birds, one stone, 0:08:41.233,0:08:43.497 to do with this fashion thing, 0:08:43.497,0:08:44.997 I think the next time you come 0:08:44.997,0:08:46.877 to England, I'm gonna have to give you 0:08:46.877,0:08:47.797 a vintage makeover. 0:08:47.797,0:08:48.505 Oh my gosh, 0:08:48.505,0:08:49.694 absolutely!! 0:08:49.694,0:08:51.372 Once this whole madness 0:08:51.372,0:08:52.788 in this world is done, 0:08:52.788,0:08:54.764 and we're all vaccinated, 0:08:54.764,0:08:56.331 I'm coming out to England, 0:08:56.331,0:08:57.899 so I can finally see my brother 0:08:57.899,0:08:58.890 for the first time 0:08:58.890,0:09:00.335 in over a year. 0:09:00.335,0:09:01.796 AND I can see you 0:09:01.796,0:09:03.778 and we are doing the vintage makeover 0:09:03.778,0:09:05.539 I'm absolutely holding you to that. 0:09:05.539,0:09:07.814 But I could not agree more with 0:09:07.814,0:09:08.894 what you've just said. 0:09:08.894,0:09:11.204 My favourite thing about what 0:09:11.204,0:09:12.504 I do is that I get to 0:09:12.504,0:09:14.473 make learning fun for people. 0:09:14.473,0:09:16.032 I get to teach 0:09:16.032,0:09:18.024 people in a way that entertains them 0:09:18.024,0:09:19.894 that truly is the best way to learn. 0:09:19.894,0:09:21.696 That's how I always 0:09:21.696,0:09:23.363 learned the most growing up 0:09:23.363,0:09:24.764 I was never somebody 0:09:24.764,0:09:26.774 who could sit in class 0:09:26.774,0:09:28.844 and hear you talk to me about something. 0:09:28.844,0:09:30.474 I need to be the one 0:09:30.474,0:09:32.084 that was getting up and doing it 0:09:32.084,0:09:33.614 I was a very kinesthetic learner 0:09:33.614,0:09:35.424 I need to be actually doing the thing 0:09:35.424,0:09:36.524 and immersed in it 0:09:36.524,0:09:38.048 to be able to understand it 0:09:38.048,0:09:39.524 and being able to 0:09:39.524,0:09:41.939 hopefully be entertaining to people 0:09:41.939,0:09:44.802 um, while they- they learn 0:09:44.802,0:09:46.295 and open their minds 0:09:46.295,0:09:47.672 to new ways of thinking 0:09:47.672,0:09:49.046 is so rewarding 0:09:49.046,0:09:50.796 so I completely agree with you 0:09:50.796,0:09:52.212 And I always say 0:09:52.212,0:09:54.212 we talk a lot in the disability community 0:09:54.212,0:09:55.182 about the fact that 0:09:55.182,0:09:56.631 y'know that we're quite low 0:09:56.631,0:09:59.420 on the totem pole of causes 0:09:59.420,0:10:01.213 and of things that people care about 0:10:01.213,0:10:02.724 and talk about or know about. 0:10:02.724,0:10:04.404 You know, you often see those like 0:10:04.404,0:10:05.918 "Diversity panels" 0:10:05.918,0:10:08.193 and it's like everything is shown 0:10:09.536,0:10:10.616 ... except disability. 0:10:10.616,0:10:11.804 And we're like "Hey now, 0:10:12.514,0:10:13.214 "Hi" 0:10:13.214,0:10:15.208 "Where are we at the table" 0:10:15.208,0:10:17.275 I think so many different 0:10:17.275,0:10:18.970 brands and companies 0:10:18.970,0:10:20.740 think that they can kind of get away 0:10:20.740,0:10:22.615 doing the absolute least 0:10:22.615,0:10:24.635 when it comes to disability representation 0:10:24.635,0:10:26.590 Whether that be in adverts 0:10:26.590,0:10:28.988 or actually making things accessible. 0:10:28.988,0:10:31.427 So many of them think 0:10:31.427,0:10:33.217 "Oh, a person in a wheelchair 0:10:33.217,0:10:34.399 and we're done. 0:10:34.399,0:10:36.058 That's it we've represented every 0:10:36.058,0:10:37.188 disabled person, 0:10:37.188,0:10:39.547 we've covered everyone's needs, excellent. 0:10:39.547,0:10:41.849 Of course our brand is friendly to the 0:10:41.849,0:10:43.825 disabled community, we have a ramp!" 0:10:43.825,0:10:46.274 And you're like, "Uh-huh, I see. 0:10:46.274,0:10:48.954 And how are you helping every other 0:10:48.954,0:10:50.582 disabled person?" 0:10:50.582,0:10:51.332 Mhm, mhm. 0:10:51.332,0:10:53.691 Like, people who use wheelchairs 0:10:53.691,0:10:55.780 actually make up quite a small part 0:10:55.780,0:10:58.650 of the disability population as a whole. 0:10:58.650,0:11:00.779 And, people just cannot get this through 0:11:00.779,0:11:02.492 their heads and, of course, having 0:11:02.492,0:11:04.430 the disability symbol be a wheelchair, 0:11:04.430,0:11:07.970 obviously a very visual way to get that 0:11:07.970,0:11:10.400 across very neatly, but it does tend 0:11:10.400,0:11:12.931 to make people forget everyone else. 0:11:13.577,0:11:15.581 Yes and I- I don't know if this has been 0:11:15.581,0:11:17.601 happening in England but over the 0:11:17.601,0:11:19.564 last number of years I've been seeing 0:11:19.564,0:11:22.672 in North America one change is 0:11:22.672,0:11:24.974 certain places are adding other stickers 0:11:24.974,0:11:27.188 that represent other disabilities. 0:11:27.188,0:11:29.571 Which is nice because for example on 0:11:29.571,0:11:33.146 public transit, like a bus, I need to 0:11:33.146,0:11:35.374 sit down, it's not a question I need to 0:11:35.374,0:11:37.341 be able to sit. Because balance is a 0:11:37.341,0:11:39.185 combination, as I'm sure you know as 0:11:39.185,0:11:41.081 deaf woman, of ears and eyes. 0:11:41.081,0:11:43.039 And so my balance, not being able to see 0:11:43.039,0:11:46.049 is quite off. And so standing on a moving 0:11:46.049,0:11:48.631 vehicle, even if I'm holding a pole, is 0:11:48.631,0:11:51.141 just not really a thing for me. So I need 0:11:51.141,0:11:53.781 sit. And so when I get on a bus with my 0:11:53.781,0:11:56.493 guide dog, people used to not register 0:11:56.493,0:11:58.348 that I was somebody who they needed to 0:11:58.348,0:12:00.198 get out of the disability seating for. 0:12:00.198,0:12:02.081 Um, so they would just continue to sit 0:12:02.081,0:12:04.025 there. But now they've added these 0:12:04.025,0:12:06.441 stickers where it's like a man with a cane 0:12:06.441,0:12:09.422 a person in a wheelchair and there's 0:12:09.422,0:12:11.271 somebody with a walker and I'm like 0:12:11.271,0:12:13.708 Thank you for showing multiple visuals 0:12:13.708,0:12:15.745 of what somebody who might need to sit in 0:12:15.745,0:12:18.152 disability seating could present as. 0:12:18.152,0:12:20.358 Yeah, I've definitely seen in the last few 0:12:20.358,0:12:22.338 years that kind of not all disabilities 0:12:22.338,0:12:25.807 are visible stickers on a lot more things 0:12:25.807,0:12:28.585 in public places. And it's so good to see 0:12:28.585,0:12:31.742 because I remember when I very first- 0:12:31.742,0:12:34.718 so I kind of grew up with a disability 0:12:34.718,0:12:37.158 but it wasn't, well I'm not going to say 0:12:37.158,0:12:39.332 noticed, but it wasn't diagnosed until 0:12:39.332,0:12:42.359 I was 17. And then when I was 17 and I 0:12:42.359,0:12:44.360 suddenly had this big health crisis and 0:12:44.360,0:12:47.060 very much did need to use, you know, 0:12:47.060,0:12:48.837 disabled toilets and I need to have 0:12:48.837,0:12:51.767 access to things. I had a lot of issues 0:12:51.767,0:12:54.973 with this. Because people were constantly 0:12:54.973,0:12:57.138 trying to stop me from using things 0:12:57.138,0:12:59.972 saying "Oh that's not for you that's for 0:12:59.972,0:13:02.197 disabled people." And I'm like I mean 0:13:02.197,0:13:04.910 I am, I don't know what I can do to- 0:13:04.910,0:13:07.776 to make this more obvious to people, that 0:13:07.776,0:13:09.603 I'm really struggling and things would 0:13:09.603,0:13:11.835 help me like this. So it's, it is really 0:13:11.835,0:13:15.042 lovely to see now. I worry less about 0:13:15.042,0:13:17.239 using disabled toilets in public 0:13:17.239,0:13:19.560 when they have a "Not all disabilities 0:13:19.560,0:13:22.020 are visible" sticker on them. Because the 0:13:22.020,0:13:24.699 dirty jokes I've received coming out of a 0:13:24.699,0:13:27.921 disabled toilet on two feet is like, ugh. 0:13:27.921,0:13:29.771 Well I think part of the problem with 0:13:29.771,0:13:31.846 that too is how many able-bodied people 0:13:31.846,0:13:34.597 just do use the toilet for people with a 0:13:34.597,0:13:35.337 disability? 0:13:36.944,0:13:39.028 Um, so many, so many able bodied people 0:13:39.028,0:13:43.028 do use different facilities that are 0:13:43.028,0:13:45.603 accessible and designed for people who 0:13:45.603,0:13:47.523 actually need them due to a disability. 0:13:47.523,0:13:50.069 And, so now I think when people see 0:13:50.069,0:13:52.643 somebody presenting as able-bodied, they 0:13:52.643,0:13:54.573 just kind of assume they're able-bodied 0:13:54.573,0:13:56.553 because of how many able-bodied people do 0:13:56.553,0:13:58.433 take advantage of having a little extra 0:13:58.433,0:14:01.063 wiggle room in the stall for when they're 0:14:01.063,0:14:03.207 pooping and they don't want anyone to hear 0:14:03.207,0:14:05.067 it and I'm like that's not what, that's 0:14:05.067,0:14:07.027 not what that was for. It's not for all 0:14:07.027,0:14:08.777 you extra shopping bags, ma'am. 0:14:08.777,0:14:10.857 It's for people who require either the bar 0:14:10.857,0:14:13.687 for support, who require the extra room 0:14:13.687,0:14:16.417 for a support worker, for a service 0:14:16.417,0:14:18.627 animal, for a mobility device. Like 0:14:18.627,0:14:21.618 there's many reasons that that exists. 0:14:21.618,0:14:23.448 But your extra shopping bags or like 0:14:23.448,0:14:26.361 extra room for popping, isn't what it was 0:14:26.361,0:14:27.151 for. 0:14:27.151,0:14:29.142 The unfortunate thing as well is that 0:14:29.142,0:14:31.195 so many places will put their baby 0:14:31.195,0:14:33.788 changing facilities into the disabled 0:14:33.788,0:14:37.149 toilets. And it's not like a special 0:14:37.149,0:14:40.699 um, weighted table it means that you can 0:14:40.699,0:14:44.121 anyone larger than a baby. It's literally 0:14:44.121,0:14:46.492 just there because they've lumped in 0:14:46.492,0:14:48.962 parents, disabled people, sure. You can 0:14:48.962,0:14:50.798 use the same facilities, it's fine. 0:14:50.798,0:14:52.952 You know, you'll never need more than one 0:14:52.952,0:14:55.266 person using it at the same time. And I've 0:14:55.266,0:14:57.935 had things where I have walked out of a 0:14:57.935,0:15:01.355 disabled toilet and a mother rammed her 0:15:01.355,0:15:04.794 buggy into my legs and was like "Oh, not 0:15:04.794,0:15:07.643 disabled or with a child then." And I was 0:15:07.643,0:15:09.792 like uhhhh... And at the time- 0:15:09.792,0:15:12.034 Actually very disabled thank you! 0:15:12.034,0:15:14.862 And at the time I mean I was a teenager 0:15:14.862,0:15:18.932 and I was too upset to say anything or do 0:15:18.932,0:15:22.036 anything. I'd only just been diagnosed 0:15:22.036,0:15:24.639 and I was like, oh this label of disabled 0:15:24.639,0:15:26.649 do I get to use this? Do I have the right? 0:15:26.649,0:15:28.807 Can I stand up to someone and actually 0:15:28.807,0:15:31.131 say "Actually I am disabled?" And it 0:15:31.131,0:15:34.960 really upset me inside and it was so 0:15:34.960,0:15:36.830 heart wrenching. Despite at the time I 0:15:36.830,0:15:39.915 had two paralyzed arms. Like, both of my 0:15:39.915,0:15:43.081 arms were paralyzed and I needed to use 0:15:43.081,0:15:44.971 the disabled toilet because it was the 0:15:44.971,0:15:47.731 only way that I could go to the loo. 0:15:47.731,0:15:51.051 Um, but for ages after that I would not 0:15:51.051,0:15:52.884 without someone else around. 0:15:52.884,0:15:54.951 You know, you've mentioned, I've mentioned 0:15:54.951,0:15:57.121 that you're deaf, and I think there's a 0:15:57.121,0:15:59.917 a lot of stereotypes that come with that. 0:15:59.917,0:16:02.179 Just like blindness and people are like 0:16:02.179,0:16:04.695 "Blindness, you can't see anything," a lot 0:16:04.695,0:16:06.733 of people think being deaf you can't hear 0:16:06.733,0:16:09.510 anything. Being deaf you can't speak. 0:16:09.510,0:16:12.123 There's a lot of things like that and so 0:16:12.123,0:16:14.495 And then you've mentioned you know your 0:16:14.495,0:16:16.463 diagnosis or being disabled as a child 0:16:16.463,0:16:18.453 and all of these things, but we haven't 0:16:18.453,0:16:20.387 actually like dove into it. So for those 0:16:20.387,0:16:22.357 of my followers who have never heard your 0:16:22.357,0:16:24.437 story could you kind of give a synopsis of 0:16:24.437,0:16:26.327 like, if you're comfortable, what your 0:16:26.327,0:16:29.227 diagnosis is? I know that uh, things like 0:16:29.227,0:16:31.413 EDS can be very hard to diagnose again, 0:16:31.413,0:16:34.143 an invisible disability so what was your 0:16:34.143,0:16:36.743 diagnosis journey to getting all of- all 0:16:36.743,0:16:38.198 of these diagnoses? 0:16:38.198,0:16:41.844 Well, with the NHPP, uh, the diagnosis 0:16:41.844,0:16:44.754 was sort of straight forward in that it 0:16:44.754,0:16:48.071 I'd always struggled with my hands and 0:16:48.071,0:16:51.112 feet as a child. And just being kind of 0:16:51.112,0:16:52.902 what was called "clumsy" because they 0:16:52.902,0:16:55.314 didn't realize that it was because I 0:16:55.314,0:16:58.224 couldn't feel what I was touching. And 0:16:58.224,0:17:00.210 you don't realize things because you 0:17:00.210,0:17:02.080 assume as a child that everyone else is 0:17:02.080,0:17:04.471 like this. So I can't feel the front of 0:17:04.471,0:17:08.081 my calves because when I was a baby I 0:17:08.081,0:17:10.705 crawled around on them and I've never been 0:17:10.705,0:17:13.196 able to feel my knees. And I just assumed 0:17:13.196,0:17:15.176 no one can feel their knees, right? Like 0:17:15.176,0:17:16.966 you can't feel the skin on your knees 0:17:16.966,0:17:19.715 that's weird, who can do that? Um, but I 0:17:19.715,0:17:21.775 thought this was totally normal til I hit 0:17:21.775,0:17:26.863 17 and I was in an exam and I lent on my 0:17:26.863,0:17:29.596 elbow for about twenty minutes whilst I 0:17:29.596,0:17:32.385 writing. And I got a crick in my neck and 0:17:32.385,0:17:35.623 woke up the next morning having paralyzed 0:17:35.623,0:17:38.360 my arms. Because this crick in my neck had 0:17:38.360,0:17:41.323 been so bad, I'm not helped by the stress 0:17:41.323,0:17:43.297 of this exam and the fact I'd been on 0:17:43.297,0:17:45.484 crutches for like six months before this 0:17:45.484,0:17:49.639 point. Um, and I had paralyzed both of my 0:17:49.639,0:17:52.288 arms and they stayed that way for a year 0:17:52.288,0:17:55.188 and a half, which was very difficult. And 0:17:55.188,0:17:57.138 I got rushed to hospital of course and 0:17:57.138,0:17:58.978 they were trying to find out what was 0:17:58.978,0:18:01.058 wrong with me, it could have been a stroke 0:18:01.058,0:18:02.978 it could have been meningitis. And they 0:18:02.978,0:18:04.898 ran all sorts of tests, did all sorts of 0:18:04.898,0:18:06.779 things and then ran a genetic screening 0:18:06.779,0:18:09.334 and were like "Oh, ah, you're actually 0:18:09.334,0:18:12.667 missing a gene." I was like, oh right 0:18:12.667,0:18:16.507 goodness. So I'm a mutant, which is great. 0:18:16.507,0:18:18.595 Still waiting for my X-men powers. 0:18:18.595,0:18:20.765 Fellow mutant here so I'm with you. 0:18:20.765,0:18:22.768 There we go, see? Have you got your X-men 0:18:22.768,0:18:25.050 powers yet? I'm hoping that mine will kick 0:18:25.050,0:18:26.930 in soon. / Not quite yet. / A bit late 0:18:26.930,0:18:28.810 you know? / Yeah I think they're in the 0:18:28.810,0:18:30.760 mail but you know the mail's been slow lately. 0:18:30.760,0:18:32.971 It has. We'll just keep blaming it on the 0:18:32.971,0:18:36.593 pandemic. It's fine. It's fine. So that 0:18:36.593,0:18:38.373 diagnosis was actually pretty 0:18:38.373,0:18:39.903 straightforward because it was 0:18:39.903,0:18:42.442 very much, "oh we ran your DNA, cool 0:18:42.442,0:18:44.547 you've got this" There we go. 0:18:44.547,0:18:47.670 But the EDS was a much harder 0:18:47.670,0:18:50.116 diagnosis and funny enough, 0:18:50.120,0:18:51.800 actually came from YouTube 0:18:51.800,0:18:53.324 and my subscribers. 0:18:53.903,0:18:56.483 So I was diagnosed with a thing called 0:18:56.483,0:19:00.163 mixed connective tissue disorder. Which 0:19:00.163,0:19:03.023 is also about being hyper-mobile 0:19:03.023,0:19:05.349 and having collagen that is kind of 0:19:05.349,0:19:06.700 too flexible and 0:19:06.700,0:19:10.226 it also affects your internal organs, but 0:19:10.526,0:19:12.650 there were parts of it that 0:19:12.675,0:19:14.755 just didn't- i just didn't fit? 0:19:14.755,0:19:16.815 I didn't like tick like all of the boxes? 0:19:16.815,0:19:19.182 I ticked quite a few of them and 0:19:19.182,0:19:20.903 my doctor was like, "Ah, well. 0:19:20.903,0:19:22.912 I don't know, maybe it's cause you've got 0:19:22.912,0:19:24.519 that other thing as well. 0:19:24.519,0:19:25.948 And you know how doctors don't 0:19:25.948,0:19:27.329 really talk to each other 0:19:27.329,0:19:29.023 if it's not their specialty. 0:19:29.023,0:19:30.612 They're like, "Oh, no, sorry. 0:19:30.612,0:19:32.851 I'm very specifically an eye doctor 0:19:32.851,0:19:36.101 so I don't talk to the brain doctor." 0:19:36.101,0:19:37.885 Like, " Oh, thanks." 0:19:37.885,0:19:39.675 But this is all one thing. 0:19:39.675,0:19:41.441 It's all in- it's all in my head so 0:19:41.441,0:19:43.399 if you could coordinate with each other? 0:19:43.399,0:19:44.929 They're like, "Oh, no, no, no." 0:19:44.929,0:19:46.869 Not my thing/It's also just one body. 0:19:46.869,0:19:49.261 Yeah, yeah. One body. One human. 0:19:49.261,0:19:51.287 All works. It's a system. 0:19:51.287,0:19:52.287 And they're like, 0:19:52.287,0:19:53.827 "No, oh no. Just this one thing" 0:19:53.827,0:19:55.221 So they always just kind of 0:19:55.221,0:19:56.748 chalked it up to that. 0:19:56.748,0:19:58.273 That I had something else and 0:19:58.273,0:20:00.073 therefore that's why I didn't really 0:20:00.073,0:20:01.993 fit this profile and it was a bit weird 0:20:02.008,0:20:04.678 and I talked about it on my YouTube channel 0:20:04.678,0:20:06.058 I've got this and this 0:20:06.058,0:20:08.030 but then in other videos I'd kind of 0:20:08.032,0:20:09.660 talk about what I was struggling with 0:20:09.660,0:20:11.570 and then say it's a bit hard because 0:20:11.570,0:20:13.960 my doctor says: This doesn't fit the profile. 0:20:13.960,0:20:15.870 And people in the comments were like: 0:20:15.870,0:20:17.813 "That's probably because you have EDS Jessica." 0:20:17.813,0:20:18.960 "Have you got checked?" 0:20:18.960,0:20:20.220 "I think you've got EDS Jessica." 0:20:20.220,0:20:21.660 "Pretty sure you've got EDS Jessica." 0:20:21.660,0:20:22.720 "This is EDS." 0:20:22.720,0:20:24.760 And I was like, is it? 0:20:24.760,0:20:25.920 My goodness. 0:20:25.920,0:20:28.230 So I went to my GP and said 0:20:28.230,0:20:30.360 well I didn't say the internet says 0:20:30.360,0:20:32.541 I have EDS. I was like: 0:20:32.541,0:20:34.892 I just would like to be re-referred 0:20:34.892,0:20:37.612 to rheumatology please. 0:20:37.612,0:20:39.812 So they could maybe check to see 0:20:39.812,0:20:41.482 whether I definitely have this thing 0:20:41.482,0:20:42.732 that I was diagnosed with? 0:20:42.732,0:20:44.883 Or maybe I have another thing. 0:20:44.883,0:20:47.933 Ehlers-Danlos Syndrome? Heard of it? 0:20:47.933,0:20:50.993 And my doctor: "Oh well that's not curable, 0:20:50.993,0:20:52.773 so I'm not gonna refer you" 0:20:52.773,0:20:53.613 What?! 0:20:54.569,0:20:56.969 I was like... I'm sorry? 0:20:57.279,0:20:59.389 Well we just shouldn't know if we have 0:20:59.389,0:21:00.879 uncurable things.Obviously. 0:21:00.879,0:21:02.269 What what what?! 0:21:02.269,0:21:04.509 And he was like "Yeah they're very busy 0:21:04.509,0:21:08.309 So, I'm not gonna refer you for them." 0:21:08.309,0:21:09.989 Ok! Right! 0:21:09.989,0:21:12.619 So I ended up having to go get a 0:21:12.619,0:21:13.769 private diagnosis. 0:21:13.769,0:21:17.073 Which, I live in England. We have the NHS. 0:21:17.073,0:21:19.993 Doing private healthcare is like 0:21:19.993,0:21:22.623 a weirdly out there type of thing. 0:21:22.623,0:21:24.153 We don't do that much. 0:21:24.153,0:21:27.070 So, I went to get a private diagnosis. 0:21:27.070,0:21:29.320 Saw a private rheumatologist who was like: 0:21:29.327,0:21:31.397 "Yeah, you've obviously got EDS." 0:21:31.397,0:21:33.327 I was like, "Oh! 0:21:33.327,0:21:35.717 Ok, well the internet was correct." 0:21:35.717,0:21:38.443 See? Sometimes you can listen to the internet. 0:21:38.443,0:21:42.173 Ok, that's how my Youtube subscribers 0:21:42.173,0:21:44.613 wonderfully diagnosed me. 0:21:44.613,0:21:47.930 What a story. I love that for you. 0:21:47.930,0:21:50.477 Now do your two diagnoses 0:21:50.477,0:21:51.952 often go hand-in-hand 0:21:51.952,0:21:54.834 or are they rarely seen together? 0:21:54.834,0:21:58.834 According to every doctor I have ever met, 0:21:58.834,0:22:02.564 I am the only case of these two things 0:22:02.564,0:22:05.804 interracting. Because, HNPP is quite 0:22:05.804,0:22:08.706 a rare neurological condition. 0:22:08.706,0:22:11.826 And it comes from my father. 0:22:11.826,0:22:14.806 And my hyper mobility comes from my mother. 0:22:14.806,0:22:18.806 So, I'm just blessed. 0:22:18.806,0:22:20.036 What a combo. 0:22:20.036,0:22:21.307 What a combo. 0:22:21.307,0:22:23.567 Well, it's made quite a wonderful woman. 0:22:23.567,0:22:26.007 So, I'm glad we have you. 0:22:26.007,0:22:27.437 I'm not glad for your pain. 0:22:27.437,0:22:29.327 I'm not glad for what you had to go 0:22:29.327,0:22:30.497 through to get here. 0:22:30.497,0:22:32.627 But I am glad our community has you, 0:22:32.627,0:22:34.464 because we need more people like you. 0:22:34.464,0:22:36.094 With such a powerful voice and 0:22:36.094,0:22:36.944 a powerful story. 0:22:36.944,0:22:39.114 As you've said, you've come out of the 0:22:39.114,0:22:39.831 closet twice. 0:22:39.831,0:22:43.831 As a disabled woman as well as being gay. 0:22:43.831,0:22:45.930 Can you share some of that journey 0:22:45.930,0:22:48.282 of intersectionality. Coming to terms 0:22:48.282,0:22:51.002 with two different, being apart of two 0:22:51.002,0:22:53.146 different minority communities. 0:22:53.146,0:22:55.369 So I think I have a very different story 0:22:55.369,0:22:57.529 and a very different journey to most 0:22:57.529,0:22:59.169 young LGBTQ+ people. 0:22:59.169,0:23:01.759 And I think in a way, that my disability 0:23:01.759,0:23:03.460 really does play into that. 0:23:03.460,0:23:06.850 So, I don't have a coming out story 0:23:06.850,0:23:09.640 because I never came out to my parents. 0:23:09.640,0:23:11.530 I was just always kind of like: 0:23:11.530,0:23:14.050 "This is me. This is who I like. 0:23:14.050,0:23:16.206 I really like this girl in the X-Men and 0:23:16.206,0:23:18.216 we're going to date and I 0:23:18.216,0:23:19.496 will marry her one day." 0:23:19.496,0:23:21.242 And my parents were like: 0:23:21.242,0:23:24.066 "She's animated but you do you." 0:23:24.066,0:23:25.046 I'm like: Yeah! 0:23:25.046,0:23:28.496 Um, I think partly my parents 0:23:28.496,0:23:29.236 are Quakers. 0:23:29.236,0:23:32.086 So they never put any expectation 0:23:32.086,0:23:34.656 on me that I had to be a certain way. 0:23:34.656,0:23:36.356 They never said, you know, 0:23:36.356,0:23:38.336 "When you grow up and get a husband." 0:23:38.336,0:23:39.557 It was always just: 0:23:39.557,0:23:41.597 "When you grow up and if you choose 0:23:41.597,0:23:42.667 to get married." 0:23:42.667,0:23:43.763 I'm like, yeah ok. 0:23:43.763,0:23:45.673 So it always felt very open and 0:23:45.673,0:23:47.726 like I could kinda share that part of me. 0:23:47.726,0:23:52.376 But, being disabled and having that with me 0:23:52.376,0:23:54.554 as I was growing up. 0:23:54.554,0:23:56.970 Not knowing that I was disabled but knowing 0:23:56.970,0:23:58.824 that there was something about my body 0:23:58.824,0:24:02.824 that was wrong, that other people weren't listening to. 0:24:02.824,0:24:04.082 Weren't believing in. 0:24:04.082,0:24:06.422 Because, my god, when you're a child 0:24:06.422,0:24:08.282 and you try to tell adults things, 0:24:08.282,0:24:10.382 it can be very difficult to explain 0:24:10.382,0:24:12.932 medical conditions because people don't 0:24:12.932,0:24:15.112 tend to believe children about these kinds 0:24:15.112,0:24:16.372 of things. When you say 0:24:16.372,0:24:17.772 you have a headache, they're like, 0:24:17.772,0:24:20.102 "Yeah, but you know. Not really. 0:24:20.102,0:24:21.062 Cause you're a kid." 0:24:21.062,0:24:21.762 Like, no no. 0:24:21.762,0:24:23.372 Genuinely, I'm having a migraine 0:24:23.372,0:24:24.432 right now. I realize 0:24:24.432,0:24:26.244 I'm a child but I'm having a migraine. 0:24:26.244,0:24:29.984 And having that to kinda battle agaisnt 0:24:29.984,0:24:33.174 and deal with made my sexuality 0:24:33.174,0:24:36.354 almost a...it almost became 0:24:36.354,0:24:38.012 something that I, of course, 0:24:38.012,0:24:39.782 I would just accept it. 0:24:39.782,0:24:41.732 Because I had something that was weighing 0:24:41.732,0:24:43.992 quite heavily on me and my 0:24:43.992,0:24:46.462 sexuality only brought me joy. 0:24:46.462,0:24:49.112 It was only, I mean I'm not saying it 0:24:49.112,0:24:50.442 brought me joy in fact like, 0:24:50.442,0:24:51.522 I had lots of girlfriends. 0:24:51.522,0:24:54.162 Because I really didn't, at all. 0:24:54.162,0:24:56.412 But it brought me joy in that, 0:24:56.412,0:24:59.362 I would have these beautiful really 0:24:59.362,0:25:02.922 close relationships that I would 0:25:02.922,0:25:05.175 have this massive crush on an actress 0:25:05.175,0:25:07.905 and I get to like, watch her and things. 0:25:07.905,0:25:10.265 and feel happy and I was like yeah! 0:25:10.265,0:25:12.145 This being gay thing is great! 0:25:12.145,0:25:12.965 I love it! 0:25:12.965,0:25:14.885 But then the body. 0:25:14.885,0:25:17.695 I'm like ugh, my body is useless. 0:25:17.695,0:25:19.115 But at least I'm gay. 0:25:19.115,0:25:20.835 So I've got that going for me. 0:25:20.835,0:25:22.715 Yeah, it became almost a saving grace 0:25:22.715,0:25:24.205 throughout my teenage years. 0:25:24.205,0:25:27.205 Struggling against a body that didn't work 0:25:27.205,0:25:29.605 and being told that it should. 0:25:29.605,0:25:31.763 Being told that I was incorrect on something. 0:25:31.763,0:25:33.763 And then having this thing that I was 0:25:33.763,0:25:36.293 really sure of and really happy with and 0:25:36.293,0:25:37.583 quite passionate about. 0:25:37.583,0:25:40.303 So, it's definetly a different coming out 0:25:40.303,0:25:42.523 to most LGBTQ+ young people 0:25:42.523,0:25:45.873 but I, in a way, hope that it's something 0:25:45.873,0:25:48.538 that we get more of going forwards. 0:25:48.538,0:25:50.758 That it's more accepted. 0:25:50.758,0:25:52.056 That children are able to 0:25:52.056,0:25:53.298 just speak their mind. 0:25:53.298,0:25:55.268 That people can support them. 0:25:55.268,0:25:57.644 That's a really beautiful story. Honestly. 0:25:57.644,0:25:59.820 You know a lot of my friends growing up 0:25:59.820,0:26:02.790 were LGBTQ+ because I was the only 0:26:02.790,0:26:06.350 disabled kid and they were the only gay kid, 0:26:06.350,0:26:10.350 or the only trans kid, and so you know we 0:26:10.350,0:26:11.845 just were like, "Hey! 0:26:11.845,0:26:14.231 You're also different and not like the other 0:26:14.231,0:26:16.745 kids in class. We should be friends." 0:26:16.745,0:26:20.745 And so I really like hearing your story 0:26:20.745,0:26:23.775 because it is very different than what 0:26:23.775,0:26:26.328 a lot of my LGBTQ+ friends went through. 0:26:26.328,0:26:28.980 There's actually a really big crossover 0:26:28.980,0:26:30.260 between the disabled community 0:26:30.260,0:26:32.259 and the LGBTQ+ community. 0:26:32.691,0:26:35.645 I think, correct statistic, is that 0:26:35.645,0:26:38.628 one third of people who are LGBTQ+ 0:26:38.628,0:26:40.117 also have a disability. 0:26:40.117,0:26:43.149 And- which is a really interesting statistic. 0:26:43.149,0:26:45.490 But I think a lot of it has to do with 0:26:45.490,0:26:47.719 the fact that you have to come out 0:26:47.719,0:26:50.519 about one thing, so you come out about 0:26:50.519,0:26:51.869 something else. Like you're more 0:26:51.869,0:26:54.479 comfortable with the other thing and 0:26:54.479,0:26:55.779 you're like, "Look, let me just 0:26:55.779,0:26:57.489 put this out here. You can all clearly see 0:26:57.489,0:27:00.318 that I am disabled, so while I'm here, 0:27:00.318,0:27:01.717 I'm gay too." 0:27:01.717,0:27:05.717 Well yeah! It's like you already have this 0:27:05.717,0:27:07.517 big thing to accept about yourself. 0:27:07.517,0:27:09.640 You already have this big target on your 0:27:09.640,0:27:12.160 back or you know a community runt 0:27:12.160,0:27:15.210 so you're like, ok well, I've got one 0:27:15.210,0:27:16.693 thing here's the other. 0:27:16.693,0:27:19.643 Now I can see that statistic being true 0:27:19.643,0:27:21.643 honestly because, as I said, so many of my 0:27:21.643,0:27:24.209 friends are LGBTQ+ and I'm disabled 0:27:24.209,0:27:26.637 so I kinda do have a lot of friends in 0:27:26.637,0:27:28.704 both worlds and I see a lot of that 0:27:28.704,0:27:30.894 crossover. I see that I've- now, at this point 0:27:30.894,0:27:32.569 in my life for both communities. 0:27:32.569,0:27:35.045 Met many people who do identify as being 0:27:35.045,0:27:35.955 a part of both. 0:27:35.955,0:27:38.085 When you met your wife did she know 0:27:38.085,0:27:38.925 sign language? 0:27:38.925,0:27:40.824 No! (laughs) 0:27:40.824,0:27:44.054 She didn't. In fact, when I first met my wife, 0:27:44.054,0:27:47.164 on our first date, I hadn't told her 0:27:47.164,0:27:50.090 anything about my disabilities. 0:27:50.090,0:27:54.090 I kind of wanted to see whether she 0:27:54.090,0:27:57.446 even liked me because I'd been on so many dates 0:27:57.446,0:27:59.838 where you spent so much time explaining 0:27:59.838,0:28:02.664 what's up. / Yup! / and then you never hear from 0:28:02.664,0:28:04.864 them again and ugh, it's such a waste of 0:28:04.864,0:28:06.604 my time!/ Very much agree! 0:28:06.604,0:28:07.794 But then you have to balance it with 0:28:07.794,0:28:10.154 do I want to go on a number of dates 0:28:10.154,0:28:11.804 or do I want to spend a whole month 0:28:11.804,0:28:13.844 talking to someone and then I tell them 0:28:13.844,0:28:16.164 and they're like, "Oh, I can't redo that?" 0:28:16.164,0:28:18.542 And then you're like, "Ugh! Well I 0:28:18.575,0:28:20.452 just wasted my month of talking to you. 0:28:20.452,0:28:21.852 What a waste of time!" 0:28:21.852,0:28:23.784 So when she first came up 0:28:23.784,0:28:25.579 she actually thought that I was wearing a 0:28:25.579,0:28:27.709 bluetooth device and was working. 0:28:27.709,0:28:29.498 Cause she saw my hearing aids and was like 0:28:29.498,0:28:32.278 "Oh, she's working hard! Continuing on 0:28:32.278,0:28:33.848 with her bluetooth device." 0:28:33.848,0:28:35.538 And I think to start with, thought I was 0:28:35.538,0:28:37.915 a bit rude that I hadn't removed 0:28:37.915,0:28:39.762 my headphones. I was like: 0:28:39.762,0:28:41.571 "Umm yeah should probably tell you 0:28:41.571,0:28:43.501 that I'm deaf." 0:28:43.501,0:28:45.821 And so yeah she didn't know anything. 0:28:45.821,0:28:49.821 But she was very blasé on our first date 0:28:49.821,0:28:51.853 I didn't tell her, you know, 0:28:51.853,0:28:53.760 "This is me. I have this disability. 0:28:53.760,0:28:55.170 This is how it affects me." 0:28:55.170,0:28:59.170 She was like, "Ok. Mmm. Do you still like 0:28:59.170,0:29:01.225 to go for walks in the woods?" 0:29:01.225,0:29:01.765 "I do." 0:29:01.765,0:29:04.085 "Do you still like national trust properties?" 0:29:04.085,0:29:04.675 "I do." 0:29:04.675,0:29:07.926 And it was just like the basic things that 0:29:07.926,0:29:09.786 she needed to know like, "Are you good 0:29:09.786,0:29:10.506 around trees?" 0:29:10.506,0:29:12.780 "I love a tree. It's wonderful." 0:29:12.780,0:29:14.880 "You good around old properties?" 0:29:14.880,0:29:16.480 "Love an old property." 0:29:16.480,0:29:17.138 "Excellent" 0:29:17.138,0:29:19.328 Basics of our marriage, that. 0:29:19.328,0:29:20.478 We're country girls at heart. 0:29:20.478,0:29:23.507 That is actually exactly how a first date 0:29:23.507,0:29:25.488 with a disabled person should go. 0:29:25.488,0:29:29.180 Word to anybody who ever goes on a date 0:29:29.180,0:29:30.915 with a disabled person. 0:29:30.915,0:29:33.134 That's how you know it's a good match: 0:29:33.134,0:29:34.724 If you're able to be blasé and focus on 0:29:34.724,0:29:36.754 the actual parts of them that are human 0:29:36.754,0:29:38.314 outside of disability. Key! 0:29:38.314,0:29:40.214 You will win a lot of points with us. 0:29:40.214,0:29:40.734 (giggles) 0:29:40.734,0:29:42.754 You mentioned something that like 0:29:42.754,0:29:44.854 really hit me and maybe we can talk about 0:29:44.854,0:29:46.574 it more on the video that we do on your 0:29:46.574,0:29:48.274 channel cause this video is already 0:29:48.274,0:29:51.539 forever long but it like almost got me 0:29:51.539,0:29:54.014 like choked up because when you said it 0:29:54.014,0:29:55.839 it resonated with me so hard. 0:29:55.839,0:29:58.425 And that is: You look more capable than 0:29:58.425,0:30:00.045 you sometimes are. 0:30:00.045,0:30:01.075 Or you present more 0:30:01.075,0:30:02.165 able-bodied than you are. 0:30:02.165,0:30:04.005 And I think that is something 0:30:04.005,0:30:06.065 that I have lived with my whole life. 0:30:06.065,0:30:08.235 It is really challenging. 0:30:08.235,0:30:09.995 It has its perks, 0:30:09.995,0:30:11.656 It has its benefits. 0:30:11.656,0:30:13.199 You know there are times when 0:30:13.199,0:30:15.089 I can just like seamlessly 0:30:15.089,0:30:16.359 fit into a group 0:30:16.359,0:30:18.379 and not be discriminated against 0:30:18.379,0:30:19.379 for a minute 0:30:19.379,0:30:20.809 because nobody knows. 0:30:20.809,0:30:24.349 But also, you know I remember being 0:30:24.349,0:30:25.629 in middle school 0:30:25.629,0:30:29.629 and actively losing most of my sight. 0:30:29.629,0:30:31.799 I had another blind student at the school 0:30:31.799,0:30:33.409 who was fully blind from birth. 0:30:33.409,0:30:35.885 And the teacher turns to me and goes, 0:30:35.885,0:30:36.705 "Molly! 0:30:36.705,0:30:38.825 Help him. He's blind, he can't see it." 0:30:38.825,0:30:39.915 And I was like, 0:30:39.915,0:30:41.765 "No, no. I too am blind 0:30:41.765,0:30:43.642 with guide dog. I don't know 0:30:43.642,0:30:45.897 what you're not getting. I too cannot 0:30:45.897,0:30:46.997 see the thing." 0:30:46.997,0:30:48.717 And I feel like that's like the 0:30:48.717,0:30:50.966 perfect example of something I faced 0:30:50.966,0:30:52.096 almost daily. 0:30:52.096,0:30:54.276 Is just like and I- I just recently 0:30:54.276,0:30:56.546 watched your, you did an ableism 0:30:56.546,0:30:58.226 video, which had me laughing 0:30:58.226,0:31:00.607 out loud and again one of the ones 0:31:00.607,0:31:02.735 you said, well many of the ones 0:31:02.735,0:31:03.716 you said resonated 0:31:03.716,0:31:05.606 but like, well at least you look good. 0:31:05.606,0:31:07.536 And it's like a I get that all the time. 0:31:07.536,0:31:08.666 Like, "Ugh I can't see" 0:31:08.666,0:31:10.636 "Oh, at least your eyes are beautiful." 0:31:10.636,0:31:11.396 And I'm like... 0:31:11.396,0:31:12.536 Wonderful, thanks. 0:31:12.738,0:31:13.829 Thanks. 0:31:13.868,0:31:15.299 That really helps. 0:31:15.299,0:31:16.579 And I- yeah 0:31:16.579,0:31:18.699 It is, it can be very challenging 0:31:19.844,0:31:22.135 and even withing your own 0:31:22.135,0:31:23.649 disability community, I don't know 0:31:23.649,0:31:25.379 if you find this you know 0:31:25.379,0:31:28.089 with a part of- because you identify 0:31:28.089,0:31:29.769 with so many different groups 0:31:29.769,0:31:31.419 of disability, I don't know if you 0:31:31.419,0:31:33.449 find this in any of your kind of subsections 0:31:33.449,0:31:35.149 of the community, but 0:31:35.149,0:31:36.349 if you don't do things 0:31:36.349,0:31:37.569 the way a lot of them do 0:31:37.569,0:31:38.809 because you're accommodating 0:31:38.809,0:31:40.699 other aspects of your disability 0:31:40.699,0:31:42.039 you're judged for it. 0:31:42.039,0:31:44.857 And I feel like because 0:31:44.857,0:31:47.751 being blind is the part of my disability that 0:31:47.751,0:31:49.357 gets focused on the most, 0:31:49.357,0:31:51.107 people assume I should accommodate it 0:31:51.107,0:31:52.828 the way all blind people do. 0:31:52.828,0:31:54.868 Or the way a lot of the community does 0:31:54.868,0:31:56.618 And I'm like, "Well, 0:31:56.618,0:31:58.128 there's also other layers 0:31:58.128,0:31:59.358 to my disability. 0:31:59.358,0:32:01.937 Like, living with PTSD 0:32:01.937,0:32:03.946 and really bad generalized anxiety 0:32:03.946,0:32:06.033 is disabling for me at times. 0:32:06.033,0:32:07.863 And so that's a very real 0:32:07.863,0:32:09.749 part of my disability that I have to 0:32:09.749,0:32:12.379 accommodate separate to my blindness. 0:32:12.379,0:32:15.693 Or like I'm just like very sensitive 0:32:15.693,0:32:17.934 I have a very sensitive digestive system 0:32:17.934,0:32:19.583 I've dealt with irritable bowel syndrome 0:32:19.583,0:32:21.334 my whole life, so it's 0:32:21.334,0:32:23.570 really hard for me to eat sometimes. 0:32:23.570,0:32:25.050 And for me to take- 0:32:25.050,0:32:26.920 I'm very sensitive to medications. Those 0:32:26.920,0:32:28.650 are other parts of my human body 0:32:28.650,0:32:30.453 that I need to accommodate. 0:32:30.453,0:32:32.200 And I have other parts of my 0:32:32.200,0:32:35.141 disability that I don't talk about on the internet 0:32:35.141,0:32:37.510 or that I don't expose to the world. 0:32:37.510,0:32:37.760 You know, things that I'm affected by 0:32:37.760,0:32:41.510 Or you know, things that I'm affected by 9:59:59.000,9:59:59.000 that I don't talk about. 9:59:59.000,9:59:59.000