Latest / Unbalanced with Cerys Davage / 65. Unmasking autism (ft. Ruby Woods)

Transcript

65. Unmasking autism (ft. Ruby Woods) · Unbalanced with Cerys Davage

0:10
Hello everyone, welcome back to another episode of Unbalanced
0:13
with Me, Kerry Savage. I hope you're all doing well.
0:17
As you guys know, I'm an I'm an extrovert.
0:19
I was going to say introvert for a second.
0:21
I'm not. I'm an extrovert.
0:22
I love meeting new people. And if you're anything like me,
0:26
then you're going to love this episode because today we are
0:28
meeting someone new once again. Ruby, hi.
0:32
Hello. How are you doing?
0:34
I'm all right. Yeah, Sun's out.
0:36
So I'm feeling really good. It's crazy.
0:39
How much of A grip the sun has on my mood.
0:42
Like it's I'm a complete different person when the sun is
0:45
out. Yeah, literally.
0:47
And I love that we're both matching with headphones and
0:49
mics as well. We're just, we're so ready.
0:53
This is my pretending to be official setup, where really
0:56
it's just where I stream Minecraft.
1:00
I love that. That's that's great.
1:03
And I mean, think it till you make it right.
1:05
Like I still have no idea what I'm doing like on the technical
1:08
side, but I'm learning, I'm getting there.
1:10
Tell us a bit about yourself. Where are you from and what do
1:13
you do? Let's go slightly further back.
1:16
I am originally from Surrey because I I live in Plymouth,
1:20
Devon now, but I always get people being like, you don't
1:25
sound like you're from Plymouth. So I grew up near Guildford and
1:31
then for sick form went to school in Bath and then from
1:35
there kind of fell in love with the West Country and being done
1:39
here so went to uni in Plymouth and never left.
1:44
So that's a long winded way to say I live in Plymouth, but I'm
1:49
from Surrey. So in terms of what I do is that
1:54
it's sporadic and usually I have like such a concise answer to
1:59
this. So usually I'll be like I'm a
2:03
disability theatre maker, practitioner and content
2:07
creator. And basically what that entails
2:10
is I will lead young people and adults who feel that they can't
2:17
access traditional theatre, and that's usually neurodivergent
2:20
and disabled people. But I also work with people who
2:24
are struggling with their mental health and I try and make
2:28
theatre accessible. So I'm an advocate for those
2:31
people while also trying to be an advocate for myself.
2:35
So do a lot of training, do a lot of access consultancy in the
2:38
theatre and yeah, run specialised disability groups.
2:44
And then my content creating is, is really alongside that in
2:49
terms of that disability. Add the curse.
2:54
See, my God, that's a hard word. I think advocacy can look
3:00
different for every person and I think it's especially in the
3:04
disability sphere about, you know, what capabilities you
3:07
have. For me, I have learnt through
3:10
years of sharing my experience online that for me the best
3:14
thing is to share my authentic as much as humanly possible and
3:20
keeping myself safe. But authentic experience.
3:24
Living Cats just joined me on my lap.
3:28
My authentic experience living as a disabled person and just
3:32
trying to show the truth and reality of that.
3:35
Sorry for that, really long winded.
3:38
Not. At all.
3:41
That was great and that is like brought up so many like Segways
3:45
that we could go down. Hey, that's Athena so.
3:50
Sweet. I foster with Cats Protection,
3:52
so that's the cat we've currently got with us.
3:55
Wow. You, you do it all.
3:57
Wow, that's that's insane. That's so sweet.
4:02
So yeah, let's go back to the start.
4:04
I can completely relate with you on the you don't sound like
4:07
you're from XYZ because I'm Welsh and I get all the time
4:12
people saying that I don't sound Welsh or that I don't sound like
4:15
I'm from Cardiff because there is a specific accent.
4:18
People say you don't sound Welsh.
4:20
Do you think I sound Welsh? Yes.
4:22
That's OK that that's restore my faith in humanity.
4:25
Thank, I also have Welsh family though so I can tend to pick up
4:29
like subtler accents. OK, but yours is I think pretty
4:33
solid Welsh accent. Thank you.
4:35
I think, I think it's, I think it's people's like an educated
4:39
like view and just only knowing Welsh from Gavin and Stacey.
4:43
I think, you know, if I if you don't sound like you're from the
4:45
Valleys, you just don't sound Welsh at all.
4:47
And then there's obviously that Cardiff accept which I don't
4:50
have and a lot of people in Cardiff don't have.
4:52
Yeah. So, yeah.
4:54
OK, well, thank you for that. That's I like you already.
4:58
And then yeah. So what you do now and working
5:02
in well in theatre, do you do that online or is that like an
5:06
in person thing? So with the theatre as a
5:12
freelance theatre practitioner is kind of my official title,
5:15
but it's also known as theatre facilitator.
5:19
I don't know why there's two different words, it just is.
5:24
So I always say to people, I work from home and they're like,
5:28
what do you mean you work from theatre at home?
5:31
But what I mean by that is I lead sessions in person.
5:35
I go into schools, I run them at the theatre.
5:40
I will go into like care homes, day centres, and I go and
5:46
deliver that in person. But those sessions are an hour
5:50
and a half and majority of the work that I'm doing is admin,
5:56
planning, research. So like, yes, there's there's
6:00
the in person element, but that's such a small portion.
6:04
The majority of the time it's computer work.
6:07
Yeah, there's like a balance of like in person stuff and then
6:10
there's a lot of admin that goes with any job.
6:12
So yeah, yeah, I suppose it's nice to have that balance of,
6:17
you know, you can go in and be like interactive, but then you
6:20
can also like just retreat back to your own.
6:25
Space. It does mean that I can like
6:28
focus all my energy and presence in that hour and a half and I
6:34
can be like, OK, I give it everything for that hour and a
6:38
half and then I can be in my pyjamas in bed and recovering,
6:44
but still working. And that's a really great
6:46
balance for me. And I found that that's the best
6:49
best way I found of working. Definitely.
6:52
Oh, that's really nice to hear. I love theatre and I study
6:55
theatre in university. Is that what you studied as
6:57
well? It is.
6:59
We're both disabled theatre girlies.
7:02
I love that. Although I'm not in theatre now,
7:04
but that was one thing that I was kind of struggling with the
7:09
concept of, you know, if I did go into theatre, would I just be
7:12
like fatigued all the time? But it's nice to hear that there
7:14
are jobs that can work around your own needs and your fatigue.
7:22
Yeah, I mean, I've, I've done some professional touring shows
7:25
before and I was really, really worried about what they would
7:29
look like. And I think because it was only
7:32
the evening, I just recouped all day and then did that evening
7:36
work. And actually it was, it was
7:38
fine. And then, oh, I think just like
7:40
the love of being like, Oh my God, I'm doing what little Ruby
7:45
always, always dreamed of. Like that really carried me
7:48
through. But that was quite a short
7:49
contract. So like that's why I was able to
7:51
do it. I don't know if I was on like a
7:54
longer term what that would look like, but at.
7:57
Least you've had that, like, yeah, you've had that insight
8:00
into that world now. And, and the shift is happening.
8:03
Like I, I went to a casting recently where, you know, I was
8:07
speaking to the casting director who is really, really keen and
8:12
really passionate about access and theatre and talking about
8:15
the shift. So, you know, it's happening.
8:17
And there are people out there, you just don't necessarily see
8:19
them. It's because they're working
8:20
behind the scenes. They're producers, they're
8:22
casting directors who really are strong advocates for disabled
8:26
people in theatre. It just is such a long, long and
8:29
slow process. So there are people out there
8:31
who are fighting for us to get back into that industry.
8:34
That's great. Well, obviously do a lot of
8:36
online content creation, which we'll get into in a minute, but
8:39
could you tell us a bit about your disability and your journey
8:43
with that and your diagnosis story?
8:45
I don't know if it's that wild, but is wild to me.
8:49
So I grew up with a dyslexia and an anxiety diagnosis.
8:57
I was always known as the anxious child.
9:00
I was known as fussy, as sensitive.
9:04
I wasn't necessarily shy, but I didn't necessarily have a large
9:10
group of friends until actually kind of later in schooling.
9:14
I think I learnt how to settle myself into those friendship
9:18
groups and really loved and craved them.
9:20
So made more friends going along, which was lovely.
9:22
But yeah, originally was just a little solo Ruby and then I was
9:30
managing and I was existing and life felt complex and
9:34
complicated but slightly muddled up because I had some childhood
9:39
trauma. So, you know, it's, you don't
9:41
know how to disentangle those things.
9:43
So it's slightly complicated in the sense that I was like, I
9:47
knew that life was difficult and I assumed that was just why,
9:50
because I was just going through things that young people
9:52
shouldn't be. And then I got to university and
9:58
had to live alone for the first time.
10:00
And that wasn't an issue for me. I thrived off that.
10:04
What the issue was is me living with other people I didn't know.
10:10
And then you start to realise how different you really are
10:14
when you're living with holistic people.
10:17
And it was, it was really stark and actually I never figured it
10:24
out myself. It was 2 housemates who had
10:28
autistic family members who started, you know, suggesting
10:31
that they think I might be autistic and I really reflect
10:35
their family members. And then at the time Channel 4
10:39
had a programme about autism and they had an online questionnaire
10:43
being like, do you think you're autistic?
10:46
And this is back in 2016. A little while that they just
10:50
put that out. But anyway, I took that and it
10:53
was like indicates that I could be autistic.
10:55
But obviously said, like, this is not evidence, Go and speak to
10:59
a doctor. And I laughed and I was like,
11:02
oh, yeah, like, they've just done this.
11:04
So everyone does. So like, everyone comes out with
11:06
this, you might be autistic. And then all my housemates did
11:11
it, and I was the only one. And I was like, oh, so that kind
11:18
of that started the cogs turning.
11:21
And I was like, oh, my gosh, oh, my gosh.
11:26
Everything I know about autism that has been presented in the
11:30
media and in the research, there's a whole nother side to
11:34
it where there's a lack of research in the different
11:39
presentations. And at that time I was using
11:42
language around like female and male presentations of autism.
11:47
But obviously now there's there's a lot more conversations
11:50
about like, should it be gendered?
11:53
Why is it gendered? So at the time I was like, Oh my
11:57
gosh, there's no, you know, insight into female presenting
12:00
autism, which now we just know is just a different
12:04
presentation. So I started researching that
12:06
and I was like, Oh my gosh, went to the doctor's and kind of
12:12
scored highly on the initial test.
12:15
And that's what started the process.
12:18
I say it's four years start to finish that it contained a lot
12:24
of push backs. I think I think it should have
12:26
been faster and I think it could have been faster because if you
12:28
think about this was 2016. So the diagnosis, diagnosis
12:34
waiting list now is a lot longer than it was back then.
12:38
And it was still long back then. Multiple things happened.
12:41
It got pushed back several times.
12:42
They never sent the letters to my house.
12:44
They never told me I had an appointment.
12:46
They never told me the appointment moved.
12:48
They said you didn't show up. So it was a lot longer than it
12:53
should have been. And then when I officially got
12:57
diagnosed, it was a really deflating moment because my
13:03
autistic report, like diagnosis report is actually really
13:07
invalidating. Like, yes, Ruby hits the
13:10
criteria for an autism diagnosis, but blah, blah, blah,
13:14
blah. Because in the in the meeting,
13:17
he was saying things like, yeah, well, I still got to get out of
13:19
bed sometimes. And my mom had to be like, it
13:22
doesn't disable you, though. So like, yes, I had a piece of
13:25
paper that said confirmed that I'm autistic, but it's not a
13:29
joyful report. It's not it's, it's really an
13:32
invalidating report. And that I don't particularly
13:35
like looking at. Yeah, I found out that was the
13:38
phone call with the doctor because I'd got diagnosed months
13:41
before. No one told me.
13:45
So I was actually diagnosed in October 2019.
13:53
You weren't told. But I wasn't, I wasn't told
13:55
until 2020. I remember it so clearly because
14:00
lockdown had just started. So we weren't in like country
14:03
lockdown. But my uni had closed because I
14:05
was doing my master's degree at the time.
14:07
My uni had closed. So I packed up my studio
14:10
apartment and drove home because I was like, I'm not staying in a
14:14
studio apartment in a pandemic. I'm going to my mom's house.
14:17
So I literally packed my car as with as much things as I could
14:20
fill and it was like a few days before the country lockdown.
14:24
I was just doing my little pasta shop in Tesco and yeah, got the
14:29
phone call. So I was just stood in the hours
14:32
of Tesco finding out that I was autistic wild.
14:35
And then we went into lockdown and then I had a lockdown to
14:39
process that information. That is insane that yeah, that's
14:44
sounds like a lot happening at once, and I'm sorry the
14:47
diagnosis didn't go as smoothly as one would have hoped.
14:51
I think that's a common story though, isn't it?
14:54
It's a shame that it is, but do you feel like the report doesn't
14:59
accurately reflect who you are? Is that why you're not, you
15:02
know, wanting to read through it again?
15:05
Or is it just something a part of your life that you know,
15:07
you've got the diagnosis and you just want to kind of move on?
15:10
I think it felt like the doctor was doing everything he possibly
15:15
could to not diagnose me. And he really begrudgingly did.
15:21
And I think that's quite hard because I came away thinking
15:25
that I had tricked him into diagnosing me.
15:28
And I was like, oh, my God. Like maybe it was me.
15:32
But then there were things that I forgot because I didn't go in
15:36
knowing information. Like I had the most basic
15:40
research in terms of like surface level that I could just
15:44
be like, Oh yeah, like this confirms, I think I, I know what
15:48
this is, but I didn't know anything.
15:50
So, you know, when you're asking about traits, I don't know
15:54
myself. So I don't know what to share
15:56
with the doctor because I don't know what traits are.
15:59
So how am I supposed to know that?
16:01
Something I struggle with is could it could be a trait when I
16:05
don't know what the traits are? And it's not your job to do
16:07
that, you know? It's a doctor's job to look for
16:09
those traits, you know? And to ask about those things
16:12
because I, I didn't have, you know, I didn't have the frog
16:16
story, I didn't have the teeth brushing.
16:18
I had two conversations, so I had lots of paperwork, then I
16:23
had a private conversation with him for like an hour and a half
16:26
and then we had a second meeting with my mum to do all the
16:29
childhood stuff. His perception and his prejudice
16:38
was scattered all over that paper and I don't want to read
16:41
that. Yeah.
16:43
And that's fair enough because that's not your fault at all.
16:47
But how did you feel, you know, after taking some time during
16:50
lockdown to process your diagnosis, did you feel like,
16:54
you know, if you reflected on your past, that it kind of made
16:57
sense? Like, were there hurdles that
16:59
you had to overcome, not even knowing what they were in a way?
17:04
I mean, my initial response was I was so pleased.
17:09
I was so happy that I found an answer to why everything had
17:15
been so difficult for such a long time.
17:18
It's not the same emotion I feel now like 4 years, five.
17:23
Oh my God, I always say, I always say four years.
17:26
And it's not it's five years now.
17:28
Officially five years. Yeah, it's not the same emotion
17:31
I feel five years in. I think because when I first got
17:34
diagnosed, I had a bit of a idea that that people would suddenly
17:40
understand me and that I'd suddenly not have to face those
17:44
barriers anymore. That I would find my people,
17:48
that I life would get easier because I had this evidence and
17:53
this piece of paper confirming what I'd figured out for myself.
17:57
And now five years down the line, I'm like, oh, that's not
18:01
the case. And all the joy that I felt in
18:05
that moment of feeling like, yes, a confirmation of what my
18:12
childhood was like and really understanding that, but a wish
18:16
for my future. And now I'm like, oh, I don't
18:19
have that anymore. I don't have that joy for the
18:23
future because I know the reality now and I've lived the
18:27
reality that that's not the case.
18:30
So it is a different feeling. It's a different emotion.
18:32
And, and, and I do crave that little hopeful Ruby who thinks
18:38
that the world is going to change and, and a part of it,
18:43
that she was going to be the forefront of that change.
18:46
And I think I had in my head that I could, I could make
18:49
though I could make the world see what it's like.
18:52
I could make the world understand me five years down
18:58
the line. I'm like, oh, no, I can't do
19:01
that. That's not a one person job.
19:03
And you know, we hit back and we face barriers everyday and it's
19:09
not getting easier. Yeah, but even though it's not a
19:13
one person job, I think what you're doing is great just to
19:17
kind of give people an insight into your life and just the
19:21
realities of it. And like you said, you're being
19:23
authentic. And the more people that do
19:26
this, you know, the better and the more voices that are raised
19:30
about these kinds of, you know, societal barriers and the issues
19:35
that we face and hopefully change will be made.
19:38
And, you know, if I, you know, that's what I do with my
19:41
podcasts. If I feel like I've educated one
19:43
person about the realities of life with a disability, then,
19:48
you know, that's better than not educating anyone.
19:52
And and that's, you know, that's kind of what I want to do with
19:55
my podcast as well as to just amplify those voices.
19:58
And I'm learning a lot as well, you know, like I just because I
20:02
have a disability doesn't mean I know everything about all kinds
20:06
of disabilities. And I think it's really
20:07
important to tap into those, you know, different lifestyles and
20:13
experiences because it's really important to just educate
20:16
yourself, even though even if it doesn't affect you, you know,
20:20
and I think you're doing a great job of that anyway.
20:25
So how did you get into content creation and why did you think
20:30
that was an important thing to do?
20:32
So I was a content creator previously.
20:37
I was making money off my social media as a Blogger, mainly
20:41
fashion. I really loved having that
20:45
outlet, you know, taking those like Blogger photos, working
20:49
with brands. And I was already establishing,
20:53
doing that coming into lockdown. So that was like a huge joy for
20:58
me. And then that was all on
21:02
Instagram because I say TikTok didn't exist.
21:05
It did. Oh, was that when it was
21:07
musically? I think it might it might have
21:11
just turned to TikTok and I was 23 at the time.
21:16
It was just slightly out of my age range.
21:20
Yeah, at that point I get you, because it was so much like
21:23
teenagers taking over. Even when TikTok became big, I
21:27
was like, because it was it was all the young people on it.
21:33
And I was like. You know, I'm coming up to my
21:36
mid 20s. I don't know if this is my bag.
21:41
And then everyone got TikTok and I still felt old on it, which is
21:44
wild. Like 23.
21:45
But like, people were so young on it.
21:48
I think I got it a week before we went in to lock down.
21:52
Initially I posted a video being like, oh, I'm looking for some
21:57
autistic women to have a chat with me about my master's
22:00
research. And I started seeing that they
22:03
were like these large creators. The people I was viewing at the
22:08
time I won't name because now that we can recognise are toxic
22:12
in the community. But I looked up to at the time
22:16
because that's all I saw. And I was like, Oh my God, this
22:22
is cool. And I never thought I should do
22:25
this. I thought I could speak to them
22:27
about my. Research.
22:29
I was like, sick. There are people who who will
22:33
who will chat to me. I don't know what possessed me
22:37
one day to just make a video about might be in the sunflower
22:40
lanyard or my safe foods. One of those I've really early
22:44
on I think all like 20K views and for me that was huge.
22:51
And I was like, whoa, people are watching this.
22:55
And then the next one got like 100,000 views and I was like, Oh
22:59
my God, people are watching this.
23:02
And then I just started like it just I just never stopped.
23:06
And I just started talking about my experience and tried to be a
23:09
link between the really inaccessible research that I was
23:13
reading because my masters at the time was looking about
23:16
accessibility, accessibility in theatre, in the arts, and I was
23:22
looking more specifically at autism.
23:24
So I was doing a lot of research into presentations and how it
23:29
was affecting people differently to the stereotypical
23:34
presentation. So I was doing all that research
23:36
and I wanted to find a way to translate that into my TikTok.
23:41
I found very quickly that the community was not as welcoming
23:47
as I thought they would be. There was a lot of language
23:52
policing, push back against high support needs, autistic people.
23:57
And you know, those are the groups of people that I was
24:00
working most directly with and still do with my theatre
24:03
company. And a lot of my advocacy is, of
24:07
course, with me and with low support people in mind, but most
24:12
of my advocacy was for high support needs disabled people
24:16
because that's who I was working with and that's who needs strong
24:19
people by their side. And I was shocked.
24:22
And I think I got swept up a little bit in being like, oh, is
24:25
this what I should be? And this is how I, how I should
24:29
enter this space? You know, things like there were
24:32
groups on Facebook that said you're not allowed to use person
24:36
first language, identity first language only.
24:39
If anyone dares identify with person first, you'll be kicked
24:44
out. That's awful.
24:45
How dare you. And that to me is really
24:49
invalidating of high support needs, people who a lot of the
24:54
time have a learning disability, and you are telling people how
24:58
they can identify. And I really struggled with that
25:01
because I'd be like, if someone wants to say I'm a person with
25:05
autism, who am I to tell them they're wrong?
25:08
I have my way of identifying and that's OK.
25:11
And I should be allowed to have my way of identifying just as
25:14
much as they should. And I also like, at the time, I
25:18
was like, how dare anyone identify as being aspergic?
25:23
But a lot of people didn't know. A lot of people didn't
25:26
understand the history. A lot of people just didn't
25:29
realise the the difficulty is when people do understand
25:35
understand the history and do directly want to other
25:38
themselves from a high support needs autistic people.
25:40
That's when we can start being like, OK, I can see that there
25:43
is this like supremacy feeling and that, you know, that's not
25:47
good in in a community. But if people resonate with a
25:50
label that they've been given, they're not viewing it in in
25:55
that supremacy way. I didn't have an issue with
25:58
that. I quickly became, I'm not very
26:01
popular in those groups. I didn't say anything but I was
26:04
just like, I don't like this, I don't, I don't like this, but I
26:10
do. Yeah, I got swept up in it.
26:12
I got swept up in using that gendered language around
26:16
diagnosis. And we do have to recognise that
26:19
there is some difference in the way that a a fab people do
26:26
experience disability and autism as a direct result of the
26:32
patriarchy. There is direct links because
26:37
people who grow up female, there's a different expectation
26:43
on us from people who grow up male.
26:45
That absolutely correct and researched and factual.
26:49
But obviously when gender identity comes in, it's slightly
26:52
different. But there's all of that muddled.
26:57
Yeah, I think I would police people on how they identified
27:01
and that's not what I do now. I'm really enjoying hearing just
27:05
a different side because I suppose I joined the disabled,
27:08
the online disabled community, quite late and I wish I'd joined
27:13
earlier. But the stories I've heard from,
27:16
you know, the past few years, maybe not as much now, are very
27:20
different to my experiences. So it's really interesting to
27:22
hear, you know, that it's not all sunshine and rainbows, you
27:27
know? No, I think there's an
27:29
expectation that you find a community and that's that's it.
27:32
That's beautiful. We have to remember that
27:36
autistic people are people that are going to be good and bad.
27:41
It's a dynamic group of people. Sometimes there are bad, bad
27:45
eggs. Sometimes there are good eggs.
27:48
We get it wrong. We make mistakes, we have
27:52
chances to grow, but as long as you don't directly blame your
27:59
autism for things that you did understand better for than make
28:06
mistakes grow where people were humans.
28:10
Exactly. And I guess it takes time to
28:13
find your people as well, you know, find people that you do
28:17
want to make those connections with and relate to and learn
28:20
from as well. And I've learnt, you know, a lot
28:25
from you, from, you know, sharing your experiences.
28:28
And I wanted to ask about. So I saw that you are an
28:32
ambulatory wheelchair user and like myself, and it's not always
28:36
something that I've always accepted.
28:40
You know, it's it's a tricky one because you know, the things you
28:43
hear about wheelchairs before your own experiences aren't
28:47
always the best. I always connected them with
28:50
like people who that couldn't walk at all, which is obviously
28:53
not the case now. I love surprising people when I
28:56
do get out of my wheelchair and people in the public are like a
28:59
miracle has happened. Like she she can like she can
29:02
suddenly walk. What is this?
29:06
You know, when I was connected to them with, like, older
29:07
people, and I never really saw younger people in wheelchairs
29:10
unless they'd, like, temporarily broken their leg.
29:12
And then, you know, they only needed a couple weeks in a
29:15
wheelchair and then they were fine.
29:17
So yeah, I want to know what your relationship to your just
29:20
mobility aids in general are, and you know how important they
29:25
are to you. So I think because I was in the
29:28
disability space for quite a while before my diagnosis,
29:34
before like either diagnosis, I loved working in the disabled
29:38
space. Couldn't figure out why.
29:40
It's because I felt comfortable and home there does.
29:44
That make sense? Yeah, I genuinely, I just, I
29:46
spent a lot of time working in disability spaces.
29:51
That's so interesting that you were there like before your
29:54
diagnosis. Sorry, carry on.
29:55
I felt really like accepted and loved and I still do and I love
30:00
it so much. Like my theatre company, some of
30:03
the best, best adults I work with and that, yeah, that's just
30:09
the most joyful time. But so I, I had been around a
30:12
lot of disabled people and I knew that some of those people
30:18
were full time wheelchair users. And I knew sometimes they would
30:24
use different mobility aids. My struggle with using my
30:28
mobility aids was the same thing with with the autism.
30:35
I I am a huge supporter for self diagnosis because it's a
30:44
privilege and it's really hard. However, we need to be careful
30:51
on the research because there is a lot of misinformation out
30:55
there. So I'm always like don't base
30:58
all your information off social media, go and do the further
31:01
research. But I personally didn't publicly
31:08
identify ever until I had the diagnosis until I had the piece
31:12
of paper because I needed medical backup to tell me what
31:18
was going on. So I didn't use mobility aids
31:24
until I had a diagnosis, which is insane, mainly because I was
31:32
worried about what other people would say, not about how other
31:37
people would react to me using them, about the fact that I
31:41
hadn't previously. That was my worry.
31:44
I was like, what? What people are going to be
31:46
like, why you now doing this? But you never did before.
31:50
And people do that. I'll show up to work in my chair
31:52
and people will be like, whoa, what?
31:55
Yeah, and. I'll be like, yeah, well, this
31:58
took a really long time to get actually.
32:00
And then they're like, oh, OK. But it was it was genuine fear
32:05
around my friends who are the most lovely, supportive, like
32:09
beautiful people. I don't know why I ever worried,
32:11
but I was like, what if you worry that?
32:15
I think in a crazy way, I was worried that people were going
32:21
to be like, because I just got my autism diagnosed with not
32:24
just, it was quite a few years after, but as I just got my
32:27
autism diagnosis, I thought people were going to be like,
32:30
are you just collecting disabilities?
32:32
And I was like, yeah, because when you get 1 diagnosis, it
32:38
leads to all the others. I'm sure.
32:41
I'm now a lot more confident in my mobility age from watching
32:44
other people, from watching content creators, and I also got
32:49
to a point in my life where I couldn't carry on without them,
32:54
so I had no choice. Yeah.
32:56
What would you say your like main symptoms are then like that
33:01
require you to go through life, you know, needing these mobility
33:04
aids? My back pain, but then that
33:08
moves down to my legs, so my legs and my feet and my knees
33:13
because it's all like that system.
33:16
That's what's the most painful. So for me, it's chronic pain
33:21
that is relieved. I do get dizzy, I do get a bit
33:25
wobbly, but those are not as affected as the chronic pain.
33:30
The chronic pain is like the big old boy, like wake up in the
33:34
middle of the night, can't sleep.
33:37
Like meds don't touch it kind of pain.
33:41
I thought everyone was at everyone else was in that much
33:45
pain after walking for 10 minutes and I thought I was the
33:48
laziest human alive. I like I need to go to the gym
33:51
more. I need to because I used to be a
33:53
cross country runner when I was younger.
33:55
Wow. Not like major, just like I used
33:59
to run in county competitions. That was it.
34:01
But my body was built for running and then for it now to
34:05
be in so much pain, I was like, just haven't exercised enough.
34:08
I'd go to the gym. The gym would make me worse.
34:12
It was mainly the chronic pain that that and the fatigue I
34:16
guess. But I didn't necessarily
34:17
understand the fatigue until until kind of listening to my
34:21
body more. Well, thank you for sharing
34:24
that. And you know I've learned a lot
34:26
from what you've shared today. I wish we could keep talking
34:30
forever and I still have SO. Many questions.
34:33
No, I love it though because I usually am the one that rambles,
34:37
so it's really nice to kind of take the backseat and watch
34:39
someone else rumble. It's great.
34:42
I want to finish by asking a question that I ask all my
34:46
interviewees because I think it's such a lovely question and
34:50
also hopefully it can help someone that's listening.
34:54
Do you have any advice for your younger self or anyone else that
35:00
might be struggling with maybe a new diagnosis?
35:05
Yeah, maybe someone that just doesn't fit in.
35:08
I think there's two different things there.
35:11
To my younger self it's hard to know what I would say that like
35:16
that's not hypocritical and something I still not doing in
35:20
my adult years. Well, you can you still tell
35:22
your? Current self, it would be
35:25
something like not everyone is going to like you and that's OK
35:32
because there's a lot of focus sometimes and I'm like, oh, do
35:37
they not like me because I'm autistic?
35:40
How dare they. And I'm like, it's probably not
35:43
even that they just might not like me and that's OK.
35:48
Like people don't have to get on with people like everyone.
35:53
You don't have to be friends with everyone.
35:56
You will find your people and you might not get on with them.
36:00
And sometimes it has nothing to do with your disability.
36:04
Sometimes it does and that's, you know, tricky, but sometimes
36:08
it's just they're not your people and that's OK.
36:11
And I think having that information would, I think make
36:15
me lighter go, that's OK. They just might not like me, but
36:20
that's OK, you know. And then advice to someone who
36:26
is newly diagnosed, the supports out there, you just have to go
36:30
look for it. And I know that's rubbish and I
36:33
know that's annoying because the doctor should give it to you,
36:36
but it's out there. It exists.
36:39
People do want to help. Companies do want to help you.
36:44
Just, yeah, you have to go on a little bit of a hunt.
36:46
Don't feel that the world is completely shut off.
36:50
They just don't give it to you right on the diagnosis.
36:55
Like when they give you the letter, they don't give you all
36:57
these services, but they are there and take them.
37:02
That's great. That's very useful information,
37:05
especially someone who might feel lost and not know what is
37:08
out there. And just knowing that there is,
37:11
would there be any like charities or links that you'd
37:14
recommend? And I could maybe link them in
37:16
the podcast description. I'm going to go with in terms of
37:20
physical disabilities because that's what I'm navigating at
37:23
the moment in paying for equipment.
37:25
I've been working with Access Your Life who are a great
37:28
charity who are helping support to get the right equipment for
37:32
me and also can help fund as in they can apply for charities for
37:37
you and also help help figure out how to do that in in payment
37:42
schemes and charities. So they're a great charity if
37:45
you're looking at mobility aids. Well, that's great and thank you
37:48
so much again for sharing your experiences.
37:51
Where can we find you on social media?
37:54
My AT is the same on TikTok and on Instagram so I'm Ruby of my
38:00
eye. There's sometimes disability,
38:03
sometimes lifestyle, sometimes neither.
38:05
So don't expect one or the other, expect a whole beautiful
38:10
amalgamation of my life. Well, yeah, because you're not
38:14
just your disability, you're also fashion.
38:16
I'm loving your like outfit and reels.
38:19
So please keep posting them. I'm obsessed.
38:22
If you enjoyed this episode, don't forget to give it a like
38:26
on YouTube if you're watching on YouTube or rate this podcast 5
38:29
stars on your podcast platform. Thank you so much to Cure LG and
38:33
D2I for sponsoring this podcast. I will be back with you guys
38:37
very soon with another episode, but until then, have a lovely
38:41
couple weeks. Bye.