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The Stigma Of Cerebral Palsy
1.2k Plays11 months ago
What are the stigmas and stereotypes attached to cerebral palsy? What is daily life with dystonia like? What is cerebral palsy and how does it develop?
In this podcast, Thomas Henley talks to Emma Stone, a cerebral palsy advocate (dystonia) and decorated horseriding athlete, currently studying a variety of Work Preparation modules in college and working in a local cafe.
Within this podcast, Emma aims to dispell stigma and stereotypes around cerebral palsy and bring more awareness to them and share the more intimate negative experiences they've gone through in daily life, school, physio, surgery and healthcare. She also highlights the life lessons she's picked up and details her top tips for other individuals with cerebral palsy.
Thomas’s Links: https://linktr.ee/thomashenleyUK
Emma's Blog: https://estoneblogersa.blogspot.com/?m=1
Chapters:
00:00 - 01:24 Introduction
01:24 - 05:09 Surgery and Deep Brain Stimulation (DBS)
05:09 - 08:24 Who Is Emma Stone?
08:24 - 10:55 What Is Cerebral Palsy?
10:55 - 14:19 Developing Cerebral Palsy
14:19 - 21:27 Living With Dystonia
21:27 - 32:36 Escaping Isolation With Cerebral Palsy
32:36 - 37:02 Navigating Healthcare with CP
37:02 - 39:38 Horse riding Achievements
39:38 - 46:45 Tips for Living With Cerebral Palsy
46:45 - 49:08 Identity vs Person first language
49:08 - 56:05 Stigma and Stereotypes
56:05 - 01:02:56 Final Thoughts
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Transcript
Introduction and Focus on Autism
00:00:06
Speaker
Good day and welcome back to the 40 Auti Podcast, the only autism podcast you need and want and desire. Because it is also great and lovely. And it's also great and lovely to have you here with me today.
Transition to Cerebral Palsy Discussion
00:00:22
Speaker
Well today we're going to switch things up, do something a little bit different.
00:00:26
Speaker
and dive into the world of cerebral palsy. Cerebral palsy is the name of a group of lifelong conditions that affect both movement and coordination. It's caused by a difference in the brain that develops before, during, or soon after birth usually.
Emma Stone's Journey with Cerebral Palsy
00:00:42
Speaker
I imagine that we're going to learn a little bit more about it from a first-hand experience and understand a bit more about the different types and perhaps the symptomology of cerebral palsy.
00:00:55
Speaker
But before that, what before that? So today I am joined by the very lovely Emma Stone, who's going to be talking about their experience with cerebral palsy. How are you doing today, Emma? I'm good. Thank you. How are you? Not too bad. Not too bad. My routines bit kind of all over the shop at the moment, very much trying to find my groove when it comes to creating content. Yeah, I can imagine.
00:01:24
Speaker
What have you been up to? Because I know that from our previous correspondence you have been sort of awaiting a surgery. Yes, it's a new surgery. So that's fun. I'm going in on Monday and it's a lot of plastic and it's going to be four hours long.
00:01:52
Speaker
Four hours long, oh my god. I'm going to be in a splint for a week or two. What, like around your neck or like around your face or your nose? Around my nose. Around your nose, oh dear. Yeah, so I remember people do that. Yeah, I remember you saying that you probably wanted to get the podcast done before that. I can imagine, imagine why. Is it because of the splint possibly? Have you ever had a surgery before?
00:02:22
Speaker
I've had a DBS which stands for deep brain stimulation. It's something to help my cerebral palsy, which is quite interesting. It's wires in my head that go down to a battery pack.
00:02:47
Speaker
Right, is that something that's like a part of your body all the time or is it just something that occurred sort of during the surgery? It's something that's in my body all the time. Oh wow, so you're like a cyborg.
Surgical Experiences and Medical Procedures
00:03:02
Speaker
Yeah I am actually. Yeah that is cool. I have to judge myself.
00:03:23
Speaker
That's very interesting. Is that something that kind of occurs like throughout the day or is it like like different sessions that you do? Is it like a constant thing? It's daily, but I don't do it daily. I do it weekly. Okay, fair enough. Sounds very interesting. I've only had one
00:03:44
Speaker
sort of major surgery in my life. I mean, I suppose you could count the very painful and horrific surgery that I had in Thailand, but in terms of actual surgeries, like being put under and stuff, I had like a, some of my ligaments replaced in my knee. I had like a bike crash in Thailand and I had that.
00:04:05
Speaker
it wasn't actually too bad i was kind of expecting when i came out of the surgery to be like feeling very good considering the amount of drugs that they put in me but i woke up and i was like feeling really groggy and horrible yep that's how i know yeah it was quite horrendous
00:04:25
Speaker
Yeah. Yeah, it's a very strange experience, 100%. But yeah, I mean, we connected through a sort of a common charity that I worked with and they've also, I think, done some support of you and ETI. And we have done a podcast previously which was a bit shorter
00:04:46
Speaker
which was over on the NDTI website.
Life Beyond Medical Challenges
00:04:50
Speaker
I imagine that that's going to go live before this. So if you're wanting a bit more of a concise version of this podcast, you're very welcome to go check out NDTI. They do some really, really great work.
00:05:04
Speaker
related to sort of social inclusion. So I highly recommend that. So yeah, I mean, would you like to give everybody a bit of a background into who the wonderful Emma is and what kind of stuff you get up to on the daily? Hi, I am Emma Stone. I am 19 and I am cerebral palsy. I do a varied of stuff on the daily. I go to college.
00:05:33
Speaker
I do horse riding and I also do some dance sometimes. I am working on a blog at the minute which should be up soon hopefully. It's very interesting is that around cerebral palsy or is that kind of
00:05:54
Speaker
It's about my life and living with CP and stuff like that. So it's like my challenges through my eyes and stuff.
Understanding Cerebral Palsy
00:06:10
Speaker
Sort of an insider's perspective kind of thing. I like that. Yeah. You should consider
00:06:18
Speaker
possibly like joining Instagram as well. You can sort of create like, I know it was very popular at the moment, these sort of basically blog style posts. I mean, it's a bit of work trying to get to grips with like the image creation and stuff, but you can very much use Instagram as kind of like a shortened blog. Might be quite helpful at some point.
00:06:44
Speaker
Maybe. Yeah, might be a bit of a tall task just for the instant. But yeah, I mean, sounds like you have a lot of sort of varied hobbies and such, but what are you currently studying at college? I'm doing preparation for work. Preparing for work. It's where they get ready for like work. Yeah.
00:07:12
Speaker
I am currently working in a cafe on, like, the serving customers and stuff. Interesting. I've never done any sort of customer service type jobs. How is that for you? Interesting. Yeah. Because I am never done. No. So I just say, why one?
00:07:41
Speaker
Yeah. Have you had any sort of interesting occurrences that have happened during your cafe experiences?
00:08:12
Speaker
They just walk, they just ignore the sign and come in. So I have to say, excuse me, would you want me
00:08:23
Speaker
Well, today we're having you on primarily to speak about your lived experience with cerebral palsy. And I think it would be really good to start off by talking about exactly what it is. I did give sort of a brief overview, but I don't think it was very sort of descriptive. And you know, I don't think it really gets sort of a good overview of it.
00:08:49
Speaker
So what exactly is it and how does it kind of develop in people? It's a movement disorder and it can happen, like you said, before Jordan was born after birth. So I got it after birth from like Jordan's death.
00:09:12
Speaker
There's four main types, there's spastic cerebral palsy, dyskinetic, cerebral palsy and then there's, just give me a minute, I need the spelling of one of those because I don't know how to say it. Do you want to send it in the chat?
00:09:37
Speaker
No, it's a tastic. And there's mixed cerebral palsy, which I'm guessing is all three of the ones I said before, but just in one body.
00:09:57
Speaker
Yes. Well I suppose like one thing that a lot of people might want to understand or ask is like I mean personally I know that sometimes it can come with some like cognitive differences as well. Is that something that happens for everybody or is that? It depends on what happens. I think like I am not doctor so I don't know but I'm just guessing
00:10:24
Speaker
Yes. Sure.
00:10:44
Speaker
But I would say it comes with a few other things. It can come with epilepsy and different stuff like that from what I've heard. I mean, you said that you sort of developed cerebral palsy due to jaundice, which for anybody who's wondering, I mean, people have an idea of like what it looks like, but just to give people a bit of an idea.
00:11:10
Speaker
jonas is kind of like yellow in the skin, the mucous membranes and the whites of the eyes. It generally occurs when the body is not processing something called bilirubin and bilirubin is basically a component that is sort of released when the red blood cells sort of naturally break down. That's kind of my
00:11:31
Speaker
Just a little bit of an overview about it, but do you have any sort of personal insight into why that caused you to develop cerebral palsy yourself? They believed that I didn't get enough oxygen to the brain, so that's how I got it. What kind of age were you? I was... I was a few months old. Oh my god. I literally weighed a bag of sugar
00:12:01
Speaker
more or less wow i was i think i was born about like maybe maybe three or four weeks premature myself i know it has been related somewhat too because like autism specifically is
00:12:20
Speaker
There's a lot of factors in the way that you can develop. You're generally born autistic, so you can't necessarily develop it after, but there are some kind of correlating things related to particular hormone levels in the womb and also stuff related to being born premature as well. I was born 28 weeks premature.
00:12:49
Speaker
So that's like 28 weeks is... That is a considerable amount, isn't it? Yeah. Wait, how much is 28 weeks and months? Sorry. I don't mean if this sounds like six months premature. Wow. Yeah, I can imagine why you were that size when you were born then.
00:13:17
Speaker
Wow, a little bit lost for words, to be honest. I didn't realise that the babies could be born sort of that early. It's kind of interesting. Yeah, very interesting. I imagine that your parents were quite concerned. Yeah, I mean, I was aware of a case because my mum got preeclampsia. Right. From keeping me in her
00:13:47
Speaker
in a room. So that's why I came out early. Yeah. Because... Was it pre-acancea, did you say? Prea, yeah. Yeah. I mean, I suppose it would be really good to...
00:14:03
Speaker
You know, we're not necessarily doing like a medical kind of base podcast. It's very much based on your lived experience, trying to understand a little bit more about your world and the ways things that you do and the difficulties and perhaps some of the positives. So what kind of cerebral palsy do you have and what kind of things happen due to that? Dyskmetical palsy otherwise known as dystonia.
Social and Communication Challenges
00:14:34
Speaker
So my moments tend to be erratic and quick. So that's a few interesting moments for that.
00:14:47
Speaker
Yes, I don't have I have several balls myself, but I know that Like from my experience, um You know, I have like kind of like like motor ticks sometimes when i'm particularly anxious And uh, some sometimes even verbal verbal ticks at times i haven't been diagnosed with Tourette syndrome because it's not consistent enough but
00:15:09
Speaker
I definitely experience those. Are you meaning interesting in the sort of like the social experiences that you have? Yes. And just everything in general really. Because I can't control them most of the time. So I've had a few instances where I've grabbed something and I couldn't let go.
00:15:39
Speaker
because this hand just locks onto things. So yeah. And then other times I've had instances where my jaw is locked and stuff. I'm not able to communicate of course, it's very annoying. But I make do with what I
00:16:07
Speaker
have which is a phone and iPad so I kind of like forgot ways to go through it from sort of the Oxford dictionary generally it says that sort of dystonia is a state of sort of abnormal muscle tone resulting in muscular spasms and abnormal posture
00:16:31
Speaker
like i imagine that if like if you have like a very strong muscle tone that some sometimes like situations like that might might happen where you can't like let go of stuff so like so is it kind of like rigid feeling like it's just kind of yeah
00:16:47
Speaker
Yeah I mean before the deep fight simulation I couldn't even open my hand on this side so that was but now I can so yeah
00:17:06
Speaker
It sounds like you probably have to have a lot of adjustments in daily living, maybe related to writing or using things in life. I can't write, so I use computers and technology to help me do my work at college in different places.
00:17:31
Speaker
Very
Navigating Education with a Disability
00:17:32
Speaker
interesting when you're saying about like not being able to kind of communicate because your jaw is sort of locked up. Autistic people sometimes experience something called like an autistic shutdown or like selective mutism where we can't particularly sort of communicate and speak and yeah exactly. What kind of flight impact does that have on like your sort of social life in a sense? Like is it regular?
00:18:01
Speaker
Yeah, sometimes, at college it can happen two or three times a day, sometimes. So like, it just can like lock. I can't make sounds, but I can't form words. Yeah, okay. It kind of happened there. So that's what happened.
00:18:32
Speaker
yeah okay i like what what do you usually do in in situations like that i i usually get my notes up on my phone and just say my jaw is locked could you could you massage it because massaging it helps it to unlock
00:18:56
Speaker
interesting that's um also something that i do when i've gone mute or i'm having a shutdown as well so we're relating on on sort of different reasons i suppose for not being able to communicate it it can be a bit
00:19:13
Speaker
irritating sometimes when people don't understand. Like they think you're being rude, you know? Yeah. I've had a few experiences like that. And it's quite stressful as well. But when you when you can't communicate and because you want to when you want to try and tell people that you can't communicate, but you can't because you can't communicate. Yeah. Yeah.
00:19:38
Speaker
especially if you don't know people very well. It's a little bit easier when people know you and know that it's something that happens, but it leads to some difficult situations. So without in the public sometimes. Yeah, it does. I normally have someone with me that knows so they can communicate for me. Is that like a supporter or is that? Yeah.
00:20:06
Speaker
I have what? In college I have one-to-one and then Fridays I have a PA. Interesting. And how is that for you do you find them to be? What kind of stuff do they help you with? They help me with like daily tasks, like going into the community and buying stuff that I need. And college
00:20:36
Speaker
They help me with the work and like writing because I can't write. So yeah. That's weirdly something as well with me. I actually had to get some reasonable adjustments at school because examiners couldn't read my handwriting. I have like I have like a bump on one of my
00:21:03
Speaker
Fingers I think it's kind of disappeared now just to a certain extent I've got like a bump on my finger because I can't because I'm very heavy-handed. I can't like Like I always break like the pencil them And stuff like that. Yeah, so so I had like a pretty much all of my exams I use like a computer and things of that nature. Yeah
00:21:26
Speaker
Well, I suppose like it would be cool to sort of dive into sort of your sort of experiences. I was thinking we could we could cover stuff around sort of school and education and we could perhaps move into health care perhaps talk about a little bit about kind of like the government and also I think something that a lot of people would be interested in hearing about would be like things related to your horse riding and your dancing and stuff.
00:21:53
Speaker
Yeah. So I suppose starting at the beginning, I mean, what has been your experience and how has it differed due to having cerebral palsy sort of in the school and education system? Because we're. You can swear if you like. Because.
00:22:21
Speaker
The staff didn't treat me like, from like, from primary, from like secondary up to like senior schools. That made me kind of like on edge. What do you mean they didn't treat you right? Like what were they specifically? I was yelled at every day for like two years.
00:22:51
Speaker
Really? Yeah. I remember staff. I didn't get the equipment that I needed. That said in my age, CP and stuff. Educational health, her plan. Yeah. And I just, on my last year, I just got shut out from college, you know, from, yeah, from my college altogether.
00:23:20
Speaker
That sounds really tough. As myself as sort of an autistic kind of adult particularly, to be honest in many settings in life even, particularly when it comes to like doctors, I experience this kind of thing called infantilization. Have you heard of infantilization before?
00:23:44
Speaker
It's basically where people treat you as like a child or an infant, even though you're an adult. You've had that. Yep, so many times. It's kind of like usually related to like disabilities in particular. Yep. I've had it on many occasions and just to name a few, I've had it in
00:24:11
Speaker
in school mainly. So like I was treated like I wasn't good enough for like the school or whatever. So... Was this that mainstream school or the special needs? Special school with a mainstream setting. Right. But it was just horrendous.
00:24:38
Speaker
You'd think that people or teachers or schools which sort of are catered for people with differences like cerebral palsy or autism or anything like that, that they would have a little bit more sensitivity when it comes to treating people. Even just my movements, I got told I was faking most of the time.
Social Interactions and Support Systems
00:25:09
Speaker
Yeah, that was a big thing that I got told I was taking it like that was putting it on. I couldn't control it.
00:25:23
Speaker
That sounds awful. I know that some people in the community kind of around autism experience that online. I think there's been a couple of occasions where people have like, I mean people very much, they either question, they usually question whether I'm autistic or not.
00:25:43
Speaker
because obviously their sort of exposure towards them or their understanding of autism is particularly like ASD, two and three individuals who have more sort of visible kind of traits and needs and things of that nature.
00:26:04
Speaker
So a lot of the time if I was to sort of self advocate or to basically like tell people why I was acting a certain way and what I needed, sometimes they would kind of dismiss it as not really being that important. Yeah. I actually know someone with autism. I know two people who have autism and one of them is high functioning autism. So I just do one.
00:26:33
Speaker
So that, I do get that in a way. So, and yeah. Do you find that you get on with him? Yeah, to a certain degree. Yeah, what you mean to a certain degree? His behaviour can sometimes be a pain in the arse. It is what it is. Yeah, everyone's very different on there. Yeah.
00:27:02
Speaker
No people, two people with the same sort of neurodivergency or disability are going to be the same. Yeah. Everyone's got their own personality and things of that nature. And that's what I found with the two people that I know of autism.
00:27:20
Speaker
Very interesting. I suppose sort of talking on sort of other people, like, have you found that it's been sort of more difficult to sort of navigate social relationships or is it something that's not particularly too hard for you? It is something because I can't go out by myself. I have to have someone with me all the time in case I fall over.
00:27:50
Speaker
So that is health being shut in your house most of the time. It can be quite isolating and lonely. But that's why I have a PA and I go to college to get me out of the house and to meet people.
00:28:16
Speaker
Yeah. Well, I'm sorry. Sorry to hear that. I mean, is it something that's going to be sort of a lifelong thing that you're always going to have to have a sort of PA around you or is it? Yeah, probably. Because of the risk of falling, I think it would be a lifelong thing.
00:28:41
Speaker
Because I can just be a fine woman and then go on the next. It can just be like that in like a split second.
00:28:58
Speaker
I can relate somewhat to the experience of being sort of indoors and isolated, but I think for the most of it, it's usually my own doing. You know, sometimes the comfort of home and the lack of sort of difficult sensory and social things make sort of being at home quite comfortable to me. But I definitely see sort of
00:29:27
Speaker
in the long run if I don't get myself out and go to like the gym or I don't try to make an effort so go outside and socialize that it does sometimes have a pretty self-significant effect on my mental health I think it's something that a lot of autistic people experience particularly right to like isolation and loneliness there can be a lot of sort of judgmental people out there
00:29:50
Speaker
And it can also relate to sober palsy as well because social anxiety is quite common for people with sober palsy because they can feel like they're being judged and watched and stuff for their movements. And I actually suffer from social anxiety myself.
00:30:20
Speaker
Yeah. And because of that, I'm on medication for it. Is that like, because I imagine that, you know, humans being, as they do, like, whether it's
00:30:36
Speaker
people with sort of physical disabilities or whether it's like an autistic person sort of stimming, you know, doing those very sort of repetitive kind of regulating behaviors, you know, people tend to sort of pick out and look at things that are sort of different than they don't see very often.
00:30:58
Speaker
like for those people it's something that only happens like pretty infrequently but for people with disabilities or people who do quite kind of stim in the open I think like it can be quite sort of a burden sometimes like it can feel very sort of paranoia inducing I imagine
00:31:20
Speaker
Same with physical disabilities, because you feel like you're being watched 24-7 when you go out.
Healthcare Experiences and Achievements
00:31:35
Speaker
I am trying to make more awareness of it, because I just want to get the word out there that we are human beings and
00:31:50
Speaker
We want to be treated as equals and not as some like disabled stupid person because we are not stupid. We aren't quite hunted even though our bodies don't allow us to be.
00:32:16
Speaker
It's kind of like people kind of make assumptions based on how you sort of appear in your body, but don't necessarily kind of think about, you know, necessarily that that might be quite different when it comes to like who you are sort of inside in your brain. Yes. Yes.
00:32:36
Speaker
What about sort of your experiences with healthcare? Like have you found that? Because I imagine that you probably have gone through quite a significant amount of like physiotherapy and I know at the start you were talking about that sort of brain sort of stimulation device that you were talking about. How is all that for you? It wasn't too bad of until I got about like
00:33:02
Speaker
Up until the age of like five, six, I did a physio. And then I kind of got like cut off because there wasn't much else they could do for me. And then at age 11, I got given the opportunity to do like a research project with less
00:33:31
Speaker
Basically, a hospital got some funding to do research with people who have more control over their dystonia than others. And they got to see how it would affect them. So I got chosen.
00:34:00
Speaker
I'll talk with a few people. And I got given the surgery like seven years ago now. Quite traumatic because they were operating on my brain and on my body and stuff. But I am glad that I did it.
00:34:26
Speaker
Because as I said before, I couldn't open my right hand whatsoever. But now I can fully open it, I can use it sometimes. And that's because of that device. Yes. Wow. And I can't go through airport scanners, because that's really hard.
00:34:50
Speaker
You're a cyborg, you can't me. No, it's not talking more about like the social element of health care. Do you? How do you experience medical professionals? What are they like? Not bad. I've had a few sketchy ones. Too bad.
00:35:10
Speaker
Yeah. I come across some professionals who are very nice and open and they actually listen to me and they don't infantilise me but in my experience a lot of medical professionals are not the best when it comes to autism. Yeah.
00:35:34
Speaker
And like with cerebral palsy, you, after a certain age, there's not much else they can do for you because they've done all that they can because of just how tight your muscles can get sometimes. Do you have to, um, to use medication?
00:36:03
Speaker
for cerebral palsy no i i mean in some cases you do in other cases you can use botox um yeah because my botox is uh like botulinum toxin isn't it yeah sort of kill kills the nerve signals interesting i've had botox in my left leg
00:36:32
Speaker
Yeah, you're a little bit too young. You're a little bit young to have Botox, Emma. I don't think you need it yet. I had it in my left leg. Yeah, yeah, yeah, yeah. I was making a joke. So I was like 9, 10, I think. That was very young.
00:37:02
Speaker
What about your experiences of horse riding and dancing? Because I know in the podcast that we did for NDTI, I expressed that I found...
00:37:13
Speaker
sort of horse riding to be pretty anxiety provoking I don't really find many things to be anxiety provoking but when it comes to being on top of animals that is just like something else I'll go skydiving and jump off cliffs and stuff but like horse riding is something else how do you sort of how do you get into horse riding what's been your experiences of it? I'm going to do
00:37:43
Speaker
to my auntie's horses from real age and she was kind of like the person who got me into horses and then I went to a stable in down near where I live and that's one of the best that I wanted to do horse riding and I've been riding for 11 to 12 years now
00:38:13
Speaker
Wow. And I am probably like 20, nearly 30 to 32 competitions, I think. Wow. Yes. But 30, I have 35 results, I think over the past 11 years. Congratulations.
00:38:41
Speaker
Thank you. And I've met her Royal Highness from the South because she's the investor for the RDA.
Managing Symptoms and Misconceptions
00:38:55
Speaker
Is that the society that sort of funds the horse riding programme as well? Yeah, it's riding for the disabled basically.
00:39:09
Speaker
That is awesome. Do you find, do you find it quite, quite easy? Cause you've been doing for like 11, 12 years. I imagine that you're, you're pretty adept at horse riding at this point. Yeah, kind of. I still get ticked off sometimes. Oh dear. Yeah, I'd be terrified of that. Yeah. Bit of adrenaline.
00:39:38
Speaker
What are some of your tips and tricks to living with cerebral palsy that you could share for other individuals who don't have experience or perhaps other people who have cerebral palsy who are listening?
00:39:53
Speaker
don't overthink it just just for you and just kind of like relax sometimes because taking deep breaths can also help to relax your body and I find music helps me to relax
00:40:19
Speaker
I'm singing helps and I'm singing helps sometimes. Is that because of the... Does it sort of relax your muscles? Yeah. Yeah. So, yeah. I'm actually signing in front of 104 people. Wow. What did you sing? Someone like you by now.
00:40:43
Speaker
Oh, very nice, very nice. How was that experience with you? It was. Was it nerve-wracking? Yeah, a little bit. But when I think my room would stop because I'm focusing on just that. Yeah.
00:41:03
Speaker
So the relaxation, important. I think what you're mentioning about the breath work, I think a lot of people hear doctors or psychologists or people like that highlighting breathing practices. And I think a lot of people, including myself when I was younger, I kind of glossed over it a little bit.
00:41:27
Speaker
i think it's it's quite hard for me to tell if something is reducing my anxiety because of my alexa fymia so i struggle to kind of notice and categorize background emotions that i'm having it's quite related to autism i talk about it a lot people are probably very tired of hearing about it on my youtube channel but um
00:41:53
Speaker
yeah i mean i it definitely does help and when you when you sort of breathing it stimulates what's called your sympathetic nervous system which is your fight and flight response so if you like breathe so really fast it tends to like increase your heart rates and
00:42:09
Speaker
Yeah. And things like that. But when you spend a lot more time breathing out than you do breathing in, it can have quite a good impact on your parasympathetic nervous system, which is kind of like your rest, digest and relax kind of part of your central nervous system. And I actually did I did a livestream recently where I did the Wim Hof. I don't know. Have you heard of Wim Hof?
00:42:41
Speaker
Oh, really? No, no, it's like this guy called the Ice Man, he does a lot of stuff related to life. Oh, yeah!
00:42:49
Speaker
yeah yeah it is like cold water related things like running in the arctic and like bathing in ice icy water and stuff it's crazy um but it also has like a breathing technique and i did one of those on the live streams it's very interesting i will say yeah it was very panic inducing because you have to like breathe in in and out like
00:43:15
Speaker
really fast and consistently about 30 times and it makes you feel like you're gonna have like a panic attack but then you hold it and you hold your breath for about first for a minute and then for a minute and a half and it's you get like all these tingles and I got I got a bit of tinnitus from it as well which was a bit weird yeah it definitely helped definitely helped
00:43:43
Speaker
If you're in the camp, anyone out there listening, if you're in the camp where you're not really, you can't really tell if breathing's helping you, I'd recommend trying that if it's something that you can do safely. Have you got any other tips, tips and tricks that you'd like to share? Massages. Massages. I love a massage.
00:44:13
Speaker
Because of the muscle, muscle tone in my body, I find it hard to sometimes function as a normal person would. So I tend to get like massages on my hands mainly, this hand in particular.
00:44:42
Speaker
Is it nice? Is it a nice thing or is it painful? Just a bit of both sometimes. Yeah. It depends on how stiff it is. Yeah. I love hand massages. I think they're great. I had one in Thailand. I had a head and hand massage. It was lovely. It was really nice. Yeah.
00:45:07
Speaker
wasn't kind of medical I would say it wasn't like sports or physio related but I imagine that's a bit more intense
00:45:15
Speaker
massages yeah that's definitely something else like again we're finding a lot of parallels here but i find that particularly for for myself that you know weekly massages definitely do help me out a lot and i don't i don't do it as much as i'd like to because it's not something that i can get on the nhs but
00:45:39
Speaker
it's definitely quite helpful for like anxiety symptoms which are kind of physical and sometimes my body sort of craves that sort of mechanical kind of touch-based sort of input and it's very relaxing to me. Not everybody likes it though.
00:46:02
Speaker
Massage is, we've got breathing exercises, any other kind of, I suppose, tips and tricks like when it comes to functioning, like are there any things or like social things perhaps that you'd like to share? Maybe just trying to be yourself. I'm not left, I'm not left, you're slow but poor.
00:46:31
Speaker
see you take over and like just just be you in the best possible way
00:46:40
Speaker
Yeah, I think that's really interesting. I do want to ask you a question, but I do want to explain, I suppose, like the autism side a bit more before I ask. But a lot of autistic people, you might sort of hear in the way that I talk about myself or the way that I sort of refer to autism, that I use the words autistic people rather than people with autism. I don't know if you've picked up on that.
00:47:09
Speaker
And a lot of people actually like using autistic people. Not everybody, of course, like everyone's very different and is very different sometimes culture to culture and person to person.
00:47:22
Speaker
But personally, for me, the reason why I use that form of language is because I don't see myself as sort of separable from autism. I see it as kind of like a part of me. I suppose it might be a bit of a kind of deep, perhaps complex question, and it's OK if you don't have an answer for it.
00:47:44
Speaker
What are your thoughts on that kind of line of thinking when it comes to cerebral palsy? Do you see it as something separate to you or do you see it as part of you? I see it as part of me and kind of sexual. Yes. Because some days it can just say you. I can control it. So it just depends.
00:48:14
Speaker
on day on day to day and like feeling anxious it can take over and like make my body just spasm yeah yeah that's interesting so it's like kind of like a shifting feelings that you have have towards it very interesting sometimes it can be a pain in the arse
00:48:45
Speaker
I can love it.
00:48:47
Speaker
It's like a little relationship I have with it. You have a toxic relationship with cerebral palsy. Well, I suppose because we've been talking specifically about yourself. I mean, we have sort of dived into a little bit of kind of the social perceptions of others. But what are some of the biggest sort of stigmas or stereotypes of cerebral palsy that you experience and what kind of things would you like to challenge?
Advocacy and Empowerment
00:49:18
Speaker
that we that we can't do much for ourselves and that and kind of just like stuff like that like we are physically enabled of doing stuff and like having relationships and stuff because I physically can't
00:49:48
Speaker
do what other people can do. It doesn't mean that I'm not able to like, say things, like try and do gestures for them. But it's just sometimes it gets, it gets someone else. When people say you should date someone with, with like, the same condition, because I don't want to date people
00:50:19
Speaker
I mean, I was going to give it a try, but I don't want someone who's not been through my experience almost. Yeah.
00:50:35
Speaker
That's interesting that you say, because there is a concept related to autism called, like, assaultative mating, where, like, autistic people day over, autistic people naturally, and some people even sort of hold it to this kind of standard of being sort of the ideal. You know, it's not really something that I particularly believe in myself. No, it's not something that you sort of believe in either. No.
00:51:05
Speaker
No. Oh, it's very good to hear that. I mean, I imagine that, you know, due to sort of the experiences and infantilization, you know, things related to functioning, you know, maybe related to like your ability to kind of advocate for yourself might be a bit hard sometimes if you have those sort of stigmas. Yeah. In particular with health care. Hmm.
00:51:33
Speaker
I find that my voice isn't taken seriously sometimes. Like social workers just push past me and go straight to a parent. Right. So they don't address you, they address your parents? No. I don't like that. No, I'm supposed to have a college address.
00:52:04
Speaker
my, my, my husband and not me. It's like, hello, I'm sending my interview. Yes.
00:52:16
Speaker
Yeah, I suppose it kind of comes comes from a place of being like, oh, you know, I don't I don't. Because I've had some things like that happen before, but I don't know if it always comes from a place of like, I think it can come from that place, but it doesn't always come from like a place of negativity. Like sometimes they just think that it's like the best thing to do because they're not very they're a bit ignorant, I suppose.
00:52:43
Speaker
Yeah, and I don't have much experience with people like me sometimes. And I'm not afraid to say what I want to say and like say what I think. Because my opening has been kind of like, do it your own way and do it.
00:53:12
Speaker
I think it's definitely a good mentality to have because some people can be very ignorant in life. Especially those who don't have disabilities. Are there any other kind of stigmas or stereotypes that you'd like to challenge?
00:53:40
Speaker
communicate for us when we have our own voices. Because people tend to just look at us and think, oh, she has physical disabilities, let's just talk for her and not actually give her a say in the matter.
00:54:07
Speaker
And like someone else I was talking to, who has, so Rosie says, says that quite a lot. She's, she's like streaming, but he's had other people talk for him and stuff. Do you think that that, do you think that that comes from, why do you think that happens? Like, is it?
00:54:38
Speaker
People will look at us and think they must be not very smart. So they make an assumption about intelligence. Which is kind of frustrating because people assume a lot of things with CP.
00:55:05
Speaker
and stuff and it just is complicated and very very very annoying I think I think people like like in the situations where that happens to me like I think some people they just like they have good intentions usually and they want to speak for me and like stand up for me but like by doing so they're sort of
00:55:35
Speaker
reduce like removing my voice in the situation you know it's kind of like counterintuitive in a sense
Music's Role in Empowerment
00:55:42
Speaker
sometimes yeah i mean not always i mean there's been situations where i've had like shutdowns and meltdowns and obviously like i can't communicate and it's been helpful for yeah like my parents or my my friends or my partner to help me out in that situation but yeah it's very rare so sometimes it's good
00:56:05
Speaker
Well, it's been great to sort of hear about your experiences with Cerebral Palsy and also your life and kind of like the differences and the ups and downs. And is there anything else that you'd really like to sort of get out there before we sort of rammed up? I would like to get out there. Don't do your book by its cover.
00:56:34
Speaker
Yes. And just think about what someone else is going through and try not to do too quickly. And maybe just think for you. Think about certain things before you communicate them. Yes.
00:57:03
Speaker
Even though I don't do that. Well, we're all human, isn't it, aren't we? But we can all make little steps to sort of improve in the way that we communicate with and treat people. So I'm sure that there'll be a lot of people. Yes, I can still. Sorry, that was my mind. I'm too charged. Is that to recharge in your cyborg attachment? Yeah.
00:57:35
Speaker
Well it's been an absolute pleasure and I'm sure you probably have changed a lot of people's minds on a lot of things and help people sort of hopefully sort of help people understand a bit more and some of the ways that they may think of people as cerebral palsy they might be wrong.
00:57:55
Speaker
So it's been great and you're a very good speaker and you should definitely consider pursuing something which is related to speaking because I think you do really well. I mean, you're only 19, like, you've got... Yeah, I'm sure. Like, if you really wanted to, you could definitely change some minds and perceptions around cerebral palsy. It's been a pleasure.
00:58:23
Speaker
That is what I want to do in the future maybe. One day. Entire me. It's quite a big thing to kind of jump to try and do. It's not the easiest I would say. No. I just want to say thank you for having me on because I know a lot of people have wants to do this.
00:58:48
Speaker
have wanted to do your podcast for quite a while. So I just want to say thank you for having me and for letting me share my story with your listeners.
00:59:04
Speaker
Well it's been an absolute pleasure and I'm also very grateful to have you here. So I'm diving into I guess some of the more sort of intimate and difficult kind of details of
00:59:20
Speaker
your life and it's been very enlightening and informative to hear about your experiences so yeah I mean usually what I do with this is the podcast I don't know if I asked you before I know I won't put this in
00:59:38
Speaker
but do you have like a song like that you really like at the moment or do you have a song which might be sort of related to your experiences in life with sort of cerebral palsy that you'd like to share? Hall of Fame. Hall of Fame. By the script because I feel like that has a really important message. Hall of Scripts.
01:00:07
Speaker
I'll really be a superhero at home. Hall of Script. Superhero. We'll have both of them to it. Yeah. So that's Hall of Fame by the Script and Superhero.
Conclusion and Appreciation
01:00:19
Speaker
By the script. You like the script then? What is it you like about them? Just the message in those two songs. Yeah. It's quite empowering for me because
01:00:35
Speaker
I just like that kind of stuff. I like that project, a message to people.
01:00:51
Speaker
Me too. Me too. Although my sort of song choice tends to be a little bit more on the sort of depressing side of life if I'm being honest. Me too. Yeah, me too. I always do a bit to the option. Like a bit of the melancholic side of life. Well, it's been great and I wish you all the best with
01:01:17
Speaker
your nasal surgery. I hope that goes well for you. And if you want to share, do you want to share any any links because I know that you've been working on that website blog that you're talking about.
01:01:32
Speaker
I will get back to you on that. OK, well, I'll put both the link to the 40 or two playlists, the playlist of music from different guests that I've had on the 40 or two podcast in the description. And once Emma gets the website and the blog up and running, I will put a link down to that in the in the in the description. Doesn't matter where you listen to this on.
01:01:57
Speaker
If you have enjoyed this, please make sure to like, consider subscribing if you're on YouTube and if you're on any of the other sort of music podcast streaming services, please consider dropping a rate on the podcast because it really does help out getting this stuff to more people. Stay up to date with that, obviously subscribe, follow, do all of that stuff and
01:02:21
Speaker
Yeah, I hope you've enjoyed this episode, the 40 or two podcast, and I'll see you guys later in a month when perhaps go check out my Instagram and, you know, my YouTube and stuff, if you want to stay up to date on a less monthly schedule. Yeah, well, it's been an absolute pleasure, Emma, and I hope you have a lovely day and I hope you, the listener, also have a wonderful day. Bye, Emma. Thank you.