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 --> 00:22:08,706
a rare neurological condition.

620
00:22:08,706 --> 00:22:11,826
And it comes from my father.

621
00:22:11,826 --> 00:22:14,806
And my hyper mobility comes from my mother.

622
00:22:14,806 --> 00:22:18,806
So, I'm just blessed.

623
00:22:18,806 --> 00:22:20,036
What a combo.

624
00:22:20,036 --> 00:22:21,307
What a combo.

625
00:22:21,307 --> 00:22:23,567
Well, it's made quite a wonderful woman.

626
00:22:23,567 --> 00:22:26,007
So, I'm glad we have you.

627
00:22:26,007 --> 00:22:27,437
I'm not glad for your pain.

628
00:22:27,437 --> 00:22:29,327
I'm not glad for what you had to go

629
00:22:29,327 --> 00:22:30,497
through to get here.

630
00:22:30,497 --> 00:22:32,627
But I am glad our community has you,

631
00:22:32,627 --> 00:22:34,464
because we need more people like you.

632
00:22:34,464 --> 00:22:36,094
With such a powerful voice and

633
00:22:36,094 --> 00:22:36,944
a powerful story.

634
00:22:36,944 --> 00:22:39,114
As you've said, you've come out of the

635
00:22:39,114 --> 00:22:39,831
closet twice.

636
00:22:39,831 --> 00:22:43,831
As a disabled woman as well as being gay.

637
00:22:43,831 --> 00:22:45,930
Can you share some of that journey

638
00:22:45,930 --> 00:22:48,282
of intersectionality. Coming to terms

639
00:22:48,282 --> 00:22:51,002
with two different, being apart of two

640
00:22:51,002 --> 00:22:53,146
different minority communities.

641
00:22:53,146 --> 00:22:55,369
So I think I have a very different story

642
00:22:55,369 --> 00:22:57,529
and a very different journey to most

643
00:22:57,529 --> 00:22:59,169
young LGBTQ+ people.

644
00:22:59,169 --> 00:23:01,759
And I think in a way, that my disability

645
00:23:01,759 --> 00:23:03,460
really does play into that.

646
00:23:03,460 --> 00:23:06,850
So, I don't have a coming out story

647
00:23:06,850 --> 00:23:09,640
because I never came out to my parents.

648
00:23:09,640 --> 00:23:11,530
I was just always kind of like:

649
00:23:11,530 --> 00:23:14,050
"This is me. This is who I like.

650
00:23:14,050 --> 00:23:16,206
I really like this girl in the X-Men and

651
00:23:16,206 --> 00:23:18,216
we're going to date and I

652
00:23:18,216 --> 00:23:19,496
will marry her one day."

653
00:23:19,496 --> 00:23:21,242
And my parents were like:

654
00:23:21,242 --> 00:23:24,066
"She's animated but you do you."

655
00:23:24,066 --> 00:23:25,046
I'm like: Yeah!

656
00:23:25,046 --> 00:23:28,496
Um, I think partly my parents

657
00:23:28,496 --> 00:23:29,236
are Quakers.

658
00:23:29,236 --> 00:23:32,086
So they never put any expectation

659
00:23:32,086 --> 00:23:34,656
on me that I had to be a certain way.

660
00:23:34,656 --> 00:23:36,356
They never said, you know,

661
00:23:36,356 --> 00:23:38,336
"When you grow up and get a husband."

662
00:23:38,336 --> 00:23:39,557
It was always just:

663
00:23:39,557 --> 00:23:41,597
"When you grow up and if you choose

664
00:23:41,597 --> 00:23:42,667
to get married."

665
00:23:42,667 --> 00:23:43,763
I'm like, yeah ok.

666
00:23:43,763 --> 00:23:45,673
So it always felt very open and

667
00:23:45,673 --> 00:23:47,726
like I could kinda share that part of me.

668
00:23:47,726 --> 00:23:52,376
But, being disabled and having that with me

669
00:23:52,376 --> 00:23:54,554
as I was growing up.

670
00:23:54,554 --> 00:23:56,970
Not knowing that I was disabled but knowing

671
00:23:56,970 --> 00:23:58,824
that there was something about my body

672
00:23:58,824 --> 00:24:02,824
that was wrong, that other people weren't listening to.

673
00:24:02,824 --> 00:24:04,082
Weren't believing in.

674
00:24:04,082 --> 00:24:06,422
Because, my god, when you're a child

675
00:24:06,422 --> 00:24:08,282
and you try to tell adults things,

676
00:24:08,282 --> 00:24:10,382
it can be very difficult to explain

677
00:24:10,382 --> 00:24:12,932
medical conditions because people don't

678
00:24:12,932 --> 00:24:15,112
tend to believe children about these kinds

679
00:24:15,112 --> 00:24:16,372
of things. When you say

680
00:24:16,372 --> 00:24:17,772
you have a headache, they're like,

681
00:24:17,772 --> 00:24:20,102
"Yeah, but you know. Not really.

682
00:24:20,102 --> 00:24:21,062
Cause you're a kid."

683
00:24:21,062 --> 00:24:21,762
Like, no no.

684
00:24:21,762 --> 00:24:23,372
Genuinely, I'm having a migraine

685
00:24:23,372 --> 00:24:24,432
right now. I realize

686
00:24:24,432 --> 00:24:26,244
I'm a child but I'm having a migraine.

687
00:24:26,244 --> 00:24:29,984
And having that to kinda battle agaisnt

688
00:24:29,984 --> 00:24:33,174
and deal with made my sexuality

689
00:24:33,174 --> 00:24:36,354
almost a...it almost became

690
00:24:36,354 --> 00:24:38,012
something that I, of course,

691
00:24:38,012 --> 00:24:39,782
I would just accept it.

692
00:24:39,782 --> 00:24:41,732
Because I had something that was weighing

693
00:24:41,732 --> 00:24:43,992
quite heavily on me and my

694
00:24:43,992 --> 00:24:46,462
sexuality only brought me joy.

695
00:24:46,462 --> 00:24:49,112
It was only, I mean I'm not saying it

696
00:24:49,112 --> 00:24:50,442
brought me joy in fact like,

697
00:24:50,442 --> 00:24:51,522
I had lots of girlfriends.

698
00:24:51,522 --> 00:24:54,162
Because I really didn't, at all.

699
00:24:54,162 --> 00:24:56,412
But it brought me joy in that,

700
00:24:56,412 --> 00:24:59,362
I would have these beautiful really

701
00:24:59,362 --> 00:25:02,922
close relationships that I would

702
00:25:02,922 --> 00:25:05,175
have this massive crush on an actress

703
00:25:05,175 --> 00:25:07,905
and I get to like, watch her and things.

704
00:25:07,905 --> 00:25:10,265
and feel happy and I was like yeah!

705
00:25:10,265 --> 00:25:12,145
This being gay thing is great!

706
00:25:12,145 --> 00:25:12,965
I love it!

707
00:25:12,965 --> 00:25:14,885
But then the body.

708
00:25:14,885 --> 00:25:17,695
I'm like ugh, my body is useless.

709
00:25:17,695 --> 00:25:19,115
But at least I'm gay.

710
00:25:19,115 --> 00:25:20,835
So I've got that going for me.

711
00:25:20,835 --> 00:25:22,715
Yeah, it became almost a saving grace

712
00:25:22,715 --> 00:25:24,205
throughout my teenage years.

713
00:25:24,205 --> 00:25:27,205
Struggling against a body that didn't work

714
00:25:27,205 --> 00:25:29,605
and being told that it should.

715
00:25:29,605 --> 00:25:31,763
Being told that I was incorrect on something.

716
00:25:31,763 --> 00:25:33,763
And then having this thing that I was

717
00:25:33,763 --> 00:25:36,293
really sure of and really happy with and

718
00:25:36,293 --> 00:25:37,583
quite passionate about.

719
00:25:37,583 --> 00:25:40,303
So, it's definetly a different coming out

720
00:25:40,303 --> 00:25:42,523
to most LGBTQ+ young people

721
00:25:42,523 --> 00:25:45,873
but I, in a way, hope that it's something

722
00:25:45,873 --> 00:25:48,538
that we get more of going forwards.

723
00:25:48,538 --> 00:25:50,758
That it's more accepted.

724
00:25:50,758 --> 00:25:52,056
That children are able to

725
00:25:52,056 --> 00:25:53,298
just speak their mind.

726
00:25:53,298 --> 00:25:55,268
That people can support them.

727
00:25:55,268 --> 00:25:57,644
That's a really beautiful story. Honestly.

728
00:25:57,644 --> 00:25:59,820
You know a lot of my friends growing up

729
00:25:59,820 --> 00:26:02,790
were LGBTQ+ because I was the only

730
00:26:02,790 --> 00:26:06,350
disabled kid and they were the only gay kid,

731
00:26:06,350 --> 00:26:10,350
or the only trans kid, and so you know we

732
00:26:10,350 --> 00:26:11,845
just were like, "Hey!

733
00:26:11,845 --> 00:26:14,231
You're also different and not like the other

734
00:26:14,231 --> 00:26:16,745
kids in class. We should be friends."

735
00:26:16,745 --> 00:26:20,745
And so I really like hearing your story

736
00:26:20,745 --> 00:26:23,775
because it is very different than what

737
00:26:23,775 --> 00:26:26,328
a lot of my LGBTQ+ friends went through.

738
00:26:26,328 --> 00:26:28,980
There's actually a really big crossover

739
00:26:28,980 --> 00:26:30,260
between the disabled community

740
00:26:30,260 --> 00:26:32,259
and the LGBTQ+ community.

741
00:26:32,691 --> 00:26:35,645
I think, correct statistic, is that

742
00:26:35,645 --> 00:26:38,628
one third of people who are LGBTQ+

743
00:26:38,628 --> 00:26:40,117
also have a disability.

744
00:26:40,117 --> 00:26:43,149
And- which is a really interesting statistic.

745
00:26:43,149 --> 00:26:45,490
But I think a lot of it has to do with

746
00:26:45,490 --> 00:26:47,719
the fact that you have to come out

747
00:26:47,719 --> 00:26:50,519
about one thing, so you come out about

748
00:26:50,519 --> 00:26:51,869
something else. Like you're more

749
00:26:51,869 --> 00:26:54,479
comfortable with the other thing and

750
00:26:54,479 --> 00:26:55,779
you're like, "Look, let me just

751
00:26:55,779 --> 00:26:57,489
put this out here. You can all clearly see

752
00:26:57,489 --> 00:27:00,318
that I am disabled, so while I'm here,

753
00:27:00,318 --> 00:27:01,717
I'm gay too."

754
00:27:01,717 --> 00:27:05,717
Well yeah! It's like you already have this

755
00:27:05,717 --> 00:27:07,517
big thing to accept about yourself.

756
00:27:07,517 --> 00:27:09,640
You already have this big target on your

757
00:27:09,640 --> 00:27:12,160
back or you know a community runt

758
00:27:12,160 --> 00:27:15,210
so you're like, ok well, I've got one

759
00:27:15,210 --> 00:27:16,693
thing here's the other.

760
00:27:16,693 --> 00:27:19,643
Now I can see that statistic being true

761
00:27:19,643 --> 00:27:21,643
honestly because, as I said, so many of my

762
00:27:21,643 --> 00:27:24,209
friends are LGBTQ+ and I'm disabled

763
00:27:24,209 --> 00:27:26,637
so I kinda do have a lot of friends in

764
00:27:26,637 --> 00:27:28,704
both worlds and I see a lot of that

765
00:27:28,704 --> 00:27:30,894
crossover. I see that I've- now, at this point

766
00:27:30,894 --> 00:27:32,569
in my life for both communities.

767
00:27:32,569 --> 00:27:35,045
Met many people who do identify as being

768
00:27:35,045 --> 00:27:35,955
a part of both.

769
00:27:35,955 --> 00:27:38,085
When you met your wife did she know

770
00:27:38,085 --> 00:27:38,925
sign language?

771
00:27:38,925 --> 00:27:40,824
No! (laughs)

772
00:27:40,824 --> 00:27:44,054
She didn't. In fact, when I first met my wife,

773
00:27:44,054 --> 00:27:47,164
on our first date, I hadn't told her

774
00:27:47,164 --> 00:27:50,090
anything about my disabilities.

775
00:27:50,090 --> 00:27:54,090
I kind of wanted to see whether she

776
00:27:54,090 --> 00:27:57,446
even liked me because I'd been on so many dates

777
00:27:57,446 --> 00:27:59,838
where you spent so much time explaining

778
00:27:59,838 --> 00:28:02,664
what's up. / Yup! / and then you never hear from

779
00:28:02,664 --> 00:28:04,864
them again and ugh, it's such a waste of

780
00:28:04,864 --> 00:28:06,604
my time!/ Very much agree!

781
00:28:06,604 --> 00:28:07,794
But then you have to balance it with

782
00:28:07,794 --> 00:28:10,154
do I want to go on a number of dates

783
00:28:10,154 --> 00:28:11,804
or do I want to spend a whole month

784
00:28:11,804 --> 00:28:13,844
talking to someone and then I tell them

785
00:28:13,844 --> 00:28:16,164
and they're like, "Oh, I can't redo that?"

786
00:28:16,164 --> 00:28:18,542
And then you're like, "Ugh! Well I

787
00:28:18,575 --> 00:28:20,452
just wasted my month of talking to you.

788
00:28:20,452 --> 00:28:21,852
What a waste of time!"

789
00:28:21,852 --> 00:28:23,784
So when she first came up

790
00:28:23,784 --> 00:28:25,579
she actually thought that I was wearing a

791
00:28:25,579 --> 00:28:27,709
bluetooth device and was working.

792
00:28:27,709 --> 00:28:29,498
Cause she saw my hearing aids and was like

793
00:28:29,498 --> 00:28:32,278
"Oh, she's working hard! Continuing on

794
00:28:32,278 --> 00:28:33,848
with her bluetooth device."

795
00:28:33,848 --> 00:28:35,538
And I think to start with, thought I was

796
00:28:35,538 --> 00:28:37,915
a bit rude that I hadn't removed

797
00:28:37,915 --> 00:28:39,762
my headphones. I was like:

798
00:28:39,762 --> 00:28:41,571
"Umm yeah should probably tell you

799
00:28:41,571 --> 00:28:43,501
that I'm deaf."

800
00:28:43,501 --> 00:28:45,821
And so yeah she didn't know anything.

801
00:28:45,821 --> 00:28:49,821
But she was very blasé on our first date

802
00:28:49,821 --> 00:28:51,853
I didn't tell her, you know,

803
00:28:51,853 --> 00:28:53,760
"This is me. I have this disability.

804
00:28:53,760 --> 00:28:55,170
This is how it affects me."

805
00:28:55,170 --> 00:28:59,170
She was like, "Ok. Mmm. Do you still like

806
00:28:59,170 --> 00:29:01,225
to go for walks in the woods?"

807
00:29:01,225 --> 00:29:01,765
"I do."

808
00:29:01,765 --> 00:29:04,085
"Do you still like national trust properties?"

809
00:29:04,085 --> 00:29:04,675
"I do."

810
00:29:04,675 --> 00:29:07,926
And it was just like the basic things that

811
00:29:07,926 --> 00:29:09,786
she needed to know like, "Are you good

812
00:29:09,786 --> 00:29:10,506
around trees?"

813
00:29:10,506 --> 00:29:12,780
"I love a tree. It's wonderful."

814
00:29:12,780 --> 00:29:14,880
"You good around old properties?"

815
00:29:14,880 --> 00:29:16,480
"Love an old property."

816
00:29:16,480 --> 00:29:17,138
"Excellent"

817
00:29:17,138 --> 00:29:19,328
Basics of our marriage, that.

818
00:29:19,328 --> 00:29:20,478
We're country girls at heart.

819
00:29:20,478 --> 00:29:23,507
That is actually exactly how a first date

820
00:29:23,507 --> 00:29:25,488
with a disabled person should go.

821
00:29:25,488 --> 00:29:29,180
Word to anybody who ever goes on a date

822
00:29:29,180 --> 00:29:30,915
with a disabled person.

823
00:29:30,915 --> 00:29:33,134
That's how you know it's a good match:

824
00:29:33,134 --> 00:29:34,724
If you're able to be blasé and focus on

825
00:29:34,724 --> 00:29:36,754
the actual parts of them that are human

826
00:29:36,754 --> 00:29:38,314
outside of disability. Key!

827
00:29:38,314 --> 00:29:40,214
You will win a lot of points with us.

828
00:29:40,214 --> 00:29:40,734
(giggles)

829
00:29:40,734 --> 00:29:42,754
You mentioned something that like

830
00:29:42,754 --> 00:29:44,854
really hit me and maybe we can talk about

831
00:29:44,854 --> 00:29:46,574
it more on the video that we do on your

832
00:29:46,574 --> 00:29:48,274
channel cause this video is already

833
00:29:48,274 --> 00:29:51,539
forever long but it like almost got me

834
00:29:51,539 --> 00:29:54,014
like choked up because when you said it

835
00:29:54,014 --> 00:29:55,839
it resonated with me so hard.

836
00:29:55,839 --> 00:29:58,425
And that is: You look more capable than

837
00:29:58,425 --> 00:30:00,045
you sometimes are.

838
00:30:00,045 --> 00:30:01,075
Or you present more

839
00:30:01,075 --> 00:30:02,165
able-bodied than you are.

840
00:30:02,165 --> 00:30:04,005
And I think that is something

841
00:30:04,005 --> 00:30:06,065
that I have lived with my whole life.

842
00:30:06,065 --> 00:30:08,235
It is really challenging.

843
00:30:08,235 --> 00:30:09,995
It has its perks,

844
00:30:09,995 --> 00:30:11,656
It has its benefits.

845
00:30:11,656 --> 00:30:13,199
You know there are times when

846
00:30:13,199 --> 00:30:15,089
I can just like seamlessly

847
00:30:15,089 --> 00:30:16,359
fit into a group

848
00:30:16,359 --> 00:30:18,379
and not be discriminated against

849
00:30:18,379 --> 00:30:19,379
for a minute

850
00:30:19,379 --> 00:30:20,809
because nobody knows.

851
00:30:20,809 --> 00:30:24,349
But also, you know I remember being

852
00:30:24,349 --> 00:30:25,629
in middle school

853
00:30:25,629 --> 00:30:29,629
and actively losing most of my sight.

854
00:30:29,629 --> 00:30:31,799
I had another blind student at the school

855
00:30:31,799 --> 00:30:33,409
who was fully blind from birth.

856
00:30:33,409 --> 00:30:35,885
And the teacher turns to me and goes,

857
00:30:35,885 --> 00:30:36,705
"Molly!

858
00:30:36,705 --> 00:30:38,825
Help him. He's blind, he can't see it."

859
00:30:38,825 --> 00:30:39,915
And I was like,

860
00:30:39,915 --> 00:30:41,765
"No, no. I too am blind

861
00:30:41,765 --> 00:30:43,642
with guide dog. I don't know

862
00:30:43,642 --> 00:30:45,897
what you're not getting. I too cannot

863
00:30:45,897 --> 00:30:46,997
see the thing."

864
00:30:46,997 --> 00:30:48,717
And I feel like that's like the

865
00:30:48,717 --> 00:30:50,966
perfect example of something I faced

866
00:30:50,966 --> 00:30:52,096
almost daily.

867
00:30:52,096 --> 00:30:54,276
Is just like and I- I just recently

868
00:30:54,276 --> 00:30:56,546
watched your, you did an ableism

869
00:30:56,546 --> 00:30:58,226
video, which had me laughing

870
00:30:58,226 --> 00:31:00,607
out loud and again one of the ones

871
00:31:00,607 --> 00:31:02,735
you said, well many of the ones

872
00:31:02,735 --> 00:31:03,716
you said resonated

873
00:31:03,716 --> 00:31:05,606
but like, well at least you look good.

874
00:31:05,606 --> 00:31:07,536
And it's like a I get that all the time.

875
00:31:07,536 --> 00:31:08,666
Like, "Ugh I can't see"

876
00:31:08,666 --> 00:31:10,636
"Oh, at least your eyes are beautiful."

877
00:31:10,636 --> 00:31:11,396
And I'm like...

878
00:31:11,396 --> 00:31:12,536
Wonderful, thanks.

879
00:31:12,738 --> 00:31:13,829
Thanks.

880
00:31:13,868 --> 00:31:15,299
That really helps.

881
00:31:15,299 --> 00:31:16,579
And I- yeah

882
00:31:16,579 --> 00:31:18,699
It is, it can be very challenging

883
00:31:19,844 --> 00:31:22,135
and even withing your own

884
00:31:22,135 --> 00:31:23,649
disability community, I don't know

885
00:31:23,649 --> 00:31:25,379
if you find this you know

886
00:31:25,379 --> 00:31:28,089
with a part of- because you identify

887
00:31:28,089 --> 00:31:29,769
with so many different groups

888
00:31:29,769 --> 00:31:31,419
of disability, I don't know if you

889
00:31:31,419 --> 00:31:33,449
find this in any of your kind of subsections

890
00:31:33,449 --> 00:31:35,149
of the community, but

891
00:31:35,149 --> 00:31:36,349
if you don't do things

892
00:31:36,349 --> 00:31:37,569
the way a lot of them do

893
00:31:37,569 --> 00:31:38,809
because you're accommodating

894
00:31:38,809 --> 00:31:40,699
other aspects of your disability

895
00:31:40,699 --> 00:31:42,039
you're judged for it.

896
00:31:42,039 --> 00:31:44,857
And I feel like because

897
00:31:44,857 --> 00:31:47,751
being blind is the part of my disability that

898
00:31:47,751 --> 00:31:49,357
gets focused on the most,

899
00:31:49,357 --> 00:31:51,107
people assume I should accommodate it

900
00:31:51,107 --> 00:31:52,828
the way all blind people do.

901
00:31:52,828 --> 00:31:54,868
Or the way a lot of the community does

902
00:31:54,868 --> 00:31:56,618
And I'm like, "Well,

903
00:31:56,618 --> 00:31:58,128
there's also other layers

904
00:31:58,128 --> 00:31:59,358
to my disability.

905
00:31:59,358 --> 00:32:01,937
Like, living with PTSD

906
00:32:01,937 --> 00:32:03,946
and really bad generalized anxiety

907
00:32:03,946 --> 00:32:06,033
is disabling for me at times.

908
00:32:06,033 --> 00:32:07,863
And so that's a very real

909
00:32:07,863 --> 00:32:09,749
part of my disability that I have to

910
00:32:09,749 --> 00:32:12,379
accommodate separate to my blindness.

911
00:32:12,379 --> 00:32:15,693
Or like I'm just like very sensitive

912
00:32:15,693 --> 00:32:17,934
I have a very sensitive digestive system

913
00:32:17,934 --> 00:32:19,583
I've dealt with irritable bowel syndrome

914
00:32:19,583 --> 00:32:21,334
my whole life, so it's

915
00:32:21,334 --> 00:32:23,570
really hard for me to eat sometimes.

916
00:32:23,570 --> 00:32:25,050
And for me to take-

917
00:32:25,050 --> 00:32:26,920
I'm very sensitive to medications. Those

918
00:32:26,920 --> 00:32:28,650
are other parts of my human body

919
00:32:28,650 --> 00:32:30,453
that I need to accommodate.

920
00:32:30,453 --> 00:32:32,200
And I have other parts of my

921
00:32:32,200 --> 00:32:35,141
disability that I don't talk about on the internet

922
00:32:35,141 --> 00:32:37,510
or that I don't expose to the world.

923
00:32:37,510 --> 00:32:37,760
You know, things that I'm affected by

924
00:32:37,760 --> 00:32:41,510
Or you know, things that I'm affected by

925
99:59:59,999 --> 99:59:59,999
that I don't talk about.

926
99:59:59,999 --> 99:59:59,999