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Episode 9: Éabha Wall
332 Plays1 month ago
Éabha Wall is an engineer and ExoSym user from Ireland who we sat down with to talk about the differences between the Irish and US healthcare system, being a disabled woman in STEM, and more.
Cerebral Palsy Foundation on Instagram: @yourcpf
CPGU on Instagram: @cerebralpalsygrowsup
Follow Éabha: @eabhas_exosyms
Credits Host: Alexa Orban
Executive Producers: Ashley Harris Whaley, Rachel Byrne
Producers: Katy Gaastra, Kyle Khachadurian
Graphics: Briana Raucci
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Transcript
Introduction to 'Cerebral Palsy Grows Up'
00:00:11
Speaker
Welcome to Cerebral Palsy Grows Up. Join us as we explore the unique experiences and stories of adults living with cerebral palsy. We hope this podcast helps you feel a sense of camaraderie and community.
Meet Ava Wall: Engineer and Advocate
00:00:24
Speaker
Today, we're joined by Ava Wall, an Irish adult with CP. Ava is based in Cork and works as a process engineer in medical device manufacturing. She wears bilateral exosim devices and joins us today to chat about the state of healthcare in Ireland for adults with CP. We talked through her journey of asking for our accommodations at work, traveling to the US for healthcare, and the dynamic nature of disability and assistive tech. On this episode, we'll also explore how ableism shows up in everyday life and how that can look both different and the same across countries and cultures. We're so excited to have you, so I'd love you to kick off the conversation with a brief self-introduction.
What is Ava's Experience with Irish Healthcare?
00:01:06
Speaker
Yeah, so my name is Ava. I am from Ireland. I live in Cork, which is at the south of the country. I'm 29. I have spastic gliplegiocerebral palsy. And I suppose, yeah, we're going to talk about CP in the Irish context today. Yeah, we are. and And, you know, a lot of the conversations that we've had are talking kind of about the care cliff in the U.S. when a lot of young adults with CP experience once they get out of pediatric care. So it's a difficult time navigating health care as a result um as an adult. So being from Ireland, can you share a bit about your care experience with cerebral palsy throughout your life, um especially as you transitioned into adult? So my experience in Ireland in terms of healthcare care relating to CP, I don't think it'll differ too vastly from the American experience in that it is primarily focused as like the largest motor disorder in children. So it's very much seen as a pediatric disorder, although i we all know the title. It says it in the name of the podcast, It Grows Up. So I suppose I think I was very lucky to grow up in, I suppose, the right area and with parents who looked to do all the right things by me so the way I would describe healthcare care for people with cerebral palsy in Ireland is I think it's very much a postcode lottery I was definitely lucky where I grew up because it's one of the bigger counties in the country and I probably had more access to resources than a lot of other people in the same position so coming uh grow up in Cork uh I had sort of state support in uh some aspects and then outside of that we sought a lot of I suppose privatized physical therapy so I would have been entitled to a certain number of blocks of physiotherapy as a child through and Enable Ireland which is sort of state supported network and then we would have sought specialized for physical therapy known as conductive
Transitioning from Pediatric to Adult Care
00:03:25
Speaker
education. So that is a Hungarian model, the Peto Institute. So they sort of combined, I suppose, physical therapy and occupational therapy. And I feel like it was quite specialized. So in that ri regard, I feel like I was quite lucky in in what I had access to to as a child a lot of it was very focused on physical exercise and sort of independent living and so but as I said a couple of minutes ago it was very much pediatric and the focus was pediatric so when I look ah through a line I suppose throughout my life life it was kind of a big focus during my childhood a lot of evenings after school sometimes during school I would have attended physio different medical appointments kind of brought to them by my parents and I suppose the focus or the gold standard always was walking in my experience anyway that was held up as something to aim for and something to work towards I think then when I came to around the age of 18 you called it what did you call it again Alexa cliff dropper the care cleft yeah I like that one because that's certainly what arrived when I came an adult to the point where I don't think healthcare care providers really prepare people for what is to come with a lifelong condition. So as I mentioned briefly earlier, this idea of, I suppose, walking being held as, well, standard is one thing, but it's kind of seen as a, at least in my experience during my childhood, I think cerebral palsy was very much seen as something was wrong with your legs. And that's kind of where it began and ended. Whereas I think the science is there and the understanding exists that cerebral palsy is a global disorder.
Comprehensive Care and Misunderstandings
00:05:16
Speaker
It absolutely impacts the whole body, every organ system. It impacts so much more than just your feet. And most people will know that it is or arises from a far brain damage so whether you have hemiplegia quadriplegia or spastic diplegia like there is far more interconnecting issues than just having like wonky legs or legs that aren't working so I think my line as child you know the age-old question what happened to you or what's wrong with you the answer would always have been oh my legs or just that my legs don't work or and we can touch a bit more on those kind of questions later but I think to kind of swing back to this kind of care cliff there's no like concept or at least there wasn't in my childhood and transition into adult services of multidisciplinary care and how CP impacts the whole body and and I think like people could do a lot more if they were armed with all of the relevant information and I know there's a separate conversation to be had with how that is delivered but yeah I mean I'll never forget I think I might have been 22 or 23 and I ran into an old physio just by chance and I remember they turned and said oh I'm surprised you're still walking and I remember thinking oh uh I that might have been nice to know like before but before now what do you mean you're surprised i'm still walking you know obviously insinuating that there was a time in their minds that inevitably i wouldn't and you know there may be a time inevitably where i don't but i don't think we do a good job certainly not in ireland and i know from discussing with american friends this idea of like uh suppose, the global impact and what it will eventually lead to, like, we should be arming people with that information. Yeah. And I love what you bring up that it really is like this international experience with this Care Cliff. um Very similar situation to myself. I mean, just not even being aware that my um CP would progress in certain ways. Right. And and maybe in certain ways that I didn't think like growing up, it was always, OK, this is how life will always be. But now, I mean, research and yeah connecting with the community and meeting so many people, you realize, well,
How Do Irish and American Healthcare Compare?
00:07:42
Speaker
wait a second. So not only do we not have access to this care, but also there are so many other lived experiences that I'm talking to of people in the CP community. And now it's like, OK, what do we do about it? Because it really is an international experience. Like this isn't something that's just happening in Ireland or the US. s yeah it's It's happening everywhere with care with CP. um So we talked a little bit about some of the similarities or major differences. To your knowledge, you know what are what are some of the major differences that you see in Ireland um compared to the US with care overall? I think that's a slightly tricky question to answer, but I think, I suppose, your healthcare system is set up very, very differently to the Irish system. The Irish system has many and plentiful problems just to touch quickly on I suppose what actually happens and when you turn 18 which is a question I failed to answer earlier is there really is no system that sort of ah you turn 18 I like to use inverted commas when I say that you're referred into the community I like to use inverted commas because I don't think this really exists so the options that were kind of provided are very minimal uh what do I call them uh so the options provided are I suppose physiotherapy blocks where you would be entitled to you know a five-week block maybe two or three times a year but I have cerebral palsies 365 days a year so that doesn't really work and it's so important to have a touch point with a medical professional or somebody at least to hold you accountable to keep you on that track of looking after whatever health need it might be i keep referring to physio obviously we know that there are are a whole host of other uh i suppose there are a whole host of other medical needs that absolutely everybody has and that doesn't that's not just limited by being non-disabled or having cerebral palsy like everybody in their life will need to seek out certain specialists for whatever they may or may not have going on so I think it's poorly the road map you're kind of thrust into this space where it's kind of like well figure it out yourself I hope you enjoyed that brief childhood of some direction and and i so i think it's difficult to speak on the differences directly speaking between irish healthcare care and the american system i do think as much as i would like to give out about the irish healthcare system because i do not think it is well run i don't think it's well set up i suppose it probably is easier to access certain uh disciplines or uh that sort of multidisciplinary care there are may be more financial barriers in the states like there are a lot of things you might be entitled to i want to use for free but when you fall into the trap with there is they may be free but the waiting lists become prohibitive to the point where you have an issue relating to CP or otherwise that it might be 18 to 24 months before you might be seen. And, you know, sometimes we reach a point of no return. I suppose the difference between Irish and American health care systems. I think I'd need to speak to more American people with CP to understand that but I know I went to a social organized by Katie through cerebral palsy strong and I did notice at this and focus group she ran I had had a lot more surgery than any other and person with CP who was there and that's not to say that that is right or wrong or that I am lucky to have had the surgeries and they're not always the right thing for your body, right? But I noticed, I did take away from that. I wondered how much was finance a barrier to to that happening for people, you know, where it doesn't come in to the same degree, I think, for for Irish people with CP. Yeah, that's a really interesting perspective. I mean, even to the fact that, you know, there are these blocks of care that you can get for PTA coming from the US. It depends on your particular insurance yeah plan, right? So sometimes you could have like six weeks covered, but it's still the same, right? Like this is a lifelong disability that we have and they're not going to cover a lifelong PT that can support you, right? Like there will always be health claims that you have to put in. yeah um So I think there are a lot of like those similar experiences and I think it does come down to coverage. But I've had friends in Canada as well that say the same thing for specialists. The wait time can be such a long
Ableism in STEM and Ava's Journey
00:12:21
Speaker
time. And I think that's something interesting that that you brought up is that sometimes it's the care when it's already kind of too late right to get that preventative care yeah where everything is yeah and I think just it's probably important that I do touch on as you were talking about insurance like it would be remiss of me not to acknowledge that I also have good insurance and it is certainly a factor I think not to the um extensive degree it might be in the states but I do find as a 29 year old when I put in for whatever specialist or physio I have insurance where I get a certain amount of what I spend on physio back um from my insurance company so I am very kind of privileged in that sense and I suppose to talk about what I actually do in terms of as an adult to care for my body and ah manage my CP and its impact I probably do a lot relative to some other people probably due to the coverage I have and my proximity to very good physios I am very lucky that I do see a physio for a massage therapy once a week I tend personal training like I have access to really good people and I think that not everybody has that depending on where they're living and also just to go briefly towards like I suppose education and understanding the body like this is something that I think our healthcare care definitely lets people down like I think a lot of people who have CP don't understand it and don't understand the different pain mitigation options that they might have like I studied ah scientific degree. I e kind of grew up in a family that prioritized, I suppose, me having access to physio and me being included in these kind of things. So I kind of, the older I got, the more I realized that this isn't necessarily the norm for people. You know, had I not studied a certain amount of physiology, maybe I wouldn't understand everything to do with my own muscles and body and how I sort of manage that and care for that looks different because of the opportunities I've had, I suppose. Definitely. And that that um saying that you said earlier in the episode just really struck me too, like that postal code lottery where you do have access to so much because um for me, I'm in between Boston and New York City. So I have you know a wide variety of care options, but for somebody that might be in the Midwest of the United States, they don't have those opportunities. um So it's really interesting to see here as well that you know there's just discrepancy in care um and some people have to fly all the way across the country um to get the care that they need. So um you you talked a little bit about your work. So I'd love to know more about that. um You're a process engineer in medical equipment manufacturing. um Can you share a little bit more about what that's like to get into the STEM field as a disabled woman? Yeah. And it's funny you mentioned that, Alexa, because it is quite difficult or it was quite difficult road to to get there, you know. So I really like school. I was a big nerd. I didn't really know where education would take me. But I felt as I kind of came to the end of my secondary schooling which would be your high school I knew that I suppose science felt like something that would always be changing so I chose to do a general science degree kind of leaning towards biology and chemistry and it was definitely an interesting time I think I grew up in a relatively sheltered way where I had a lot of opportunity at school where I felt I had thrived. So college at maybe 19 or 20 was probably the first time that I experienced the big bad world and how disability is received in it, i.e. not well. And I think in terms of the STEM field, I went in anticipating, you know, that I would have equal opportunity because why would I think otherwise? And I think it certainly was challenging in that I was likely one of the first physically disabled people that undertook this degree stream. So like it was a big learning curve for me in terms of experiencing ableism and other people really not having the skills or tools or frameworks in place for me to succeed. So getting to the end of that degree was quite strenuous and ah really did feel impossible at certain points. So now that I am working and quite happy in my job and interested by it, like I feel really lucky to have, I suppose, gotten over the finish line because when I was in my early twenties, I really thought that that wouldn't happen for me. and Which is kind of disappointing when I think about like, even outside of CP, right? You look at the diaspora of disabled people and I really do think that disabled people make natural engineers because we are used to navigating a world not built with us in mind like we're naturally problem solvers because you call up plot against a lot of problems like inaccessibility looks different for me as it looks for you and it looks different again for somebody who uses a wheelchair part-time or full-time or somebody with dwarfism. Like there is, I suppose, accessibility holds a multitude and people think of it as one thing and that's providing a ram. And that's kind of where that begins and ends in people's minds when you don't have experience with what it means to be disabled. But when you are disabled, you are just used to this. You are used to coming up against barrier and barrier and a barrier again and trying to circumnavigate those. Now, I certainly don't think we should glorify that pattern, like this kind of superseding the odds or what do people love to say, like breaking barriers, smashing glass ceilings. Like I would far rather remove them. Like I don't think we should glorify struggle. I think struggle is bad actually. It might build character, but I have enough character. I think I was driven towards sort of a prop career of problem solving because I'm used to doing it. As are you, as is everybody on this call. Like. What is easy about being disabled? Absolutely nothing. There are a lot of good things about being disabled. But there is nothing easy about it. So. I think. Yes. I'm kind of mathematically minded. I. Would lean towards that anyway. But I totally think it's like chicken and an egg situation. Like. So. To kind of. swing back to what I said earlier, like I wish that it wasn't quite so difficult or seen as kind of unusual for disabled people to enter into the STEM field because they would be so good at it. Because I know that it is why I am good at it. Like I know that it's because I'm disabled, not just because I'm, you know, lean that way or my intelligence lies in kind of engineering and maths. That might all be true. But I know that I look at things differently because I have a different perspective. I feel like that answer was 100 years long. So. I know I think it was great. and And we definitely are like these master adapters to like that's something that I often say. um But I think it also kind of ties into um a topic that I wanted to touch upon with you too, Ava, is in the disability community, we often talk about our experiences with ableism. um And I think it kind of ties into what you were saying, how um you entered into the STEM field and being a disabled woman, kind of some of the barriers that you had to break through. um So have you encountered a lot of ableism in Ireland? And how do you think it differs from other countries that you as a whole, one thing that really struck me when I kind of drifted towards this online activism in this space, like, there are so many great people who are sharing their experiences and I think the biggest thing that shook me was honestly how universal a lot of it is where I really started to kind of put the puzzle pieces together in my early 20s that actually this is not a unique experience I think we all love to think that we're having this like really unique experience, but there's a degree of comfort in knowing actually it isn't. And then there's a degree of discomfort in realizing that it's a structural issue, right? So you kind of can't manifest your way out of the structural issue, which I also learned in my early 20s. So I think I was lucky enough to grow up in a household in an environment where you know my confidence was built up and I really did see myself as equal to everybody else it wasn't something that I saw which I think therein lies the problem the fact that I did not see myself as disabled meant that like when you are kind of thrust into the world and realize that other people do and that the preconception is a negative one like there's so much to unpack and unpick there because you have to kind of unlearn everything that you thought you knew about yourself and also then kind of reject what other people think they know about you so it's all about people's preconceived ideas about what intelligence and beauty and worthiness kind of looks like so and I think anyone with any kind of disability experiences that at some point in life but I was definitely in my early 20s before I diagnosed that for what it was and I'm kind of glad it came to me at that point in my life and I feel like I'm at a very different place with it all now but like it all felt very personal when you're initially going through it because you're looking around at like all of your non-disabled peers and you're like well I don't think that they're actually experiencing this I think this might be
00:22:21
Speaker
me and then ah couple of years later you can kind of look back with a bit of camne and collectedness and realize well actually it's not me but takes a lot of metal i think to decide that it's not you and really reject ah concept of ableilism and all that it entails but i think people package ableism under like discrimination you know just the idea that disabled people are maybe discriminated against but people also think that's something that be me. we left in the 50s and actually unfortunately a lot of the problems that we had in the 50s we still have among many others one thing that you brought up that I thought was really interesting too um was talking about those experiences where you know you you don't necessarily put yourself into the bucket as being disabled. And I know that that as a child, right, like, it was a similar experience that I had. So I always felt like I had to keep up with everybody else, right? Like, it was my fault that I wasn't able to fit into the fold with everybody, versus saying that I can take up the space as I am how I show up. That's something I've definitely learned. You know, in my later 20s, I would never have asked for a break of walking or for different accommodations that I need. Like that wasn't even something that had crossed my mind, especially when I was younger. So it's a learning process because I think it's just so systematic that it even goes like internally into who we are to say, wait a second, you start to second guess yourself on what you're asking for and what you need. So sounds like, you know, similar experience there.
Navigating Workplace Accommodations
00:23:57
Speaker
Could you share a little bit of advice for our listeners who may be considering a career in STEM or just how to navigate workplace accommodations. So I think a lot of people would have a degree of fear around disclosing disability. I know I would have felt that at a certain point as well, this idea that if you flag it, you're flagging a potential weakness and you're taking yourself out of the running. I think as I touched on earlier, this kind of, you can use, I suppose, your disability and what it has taught you in this life to your advantage. Not in a toxic, like, inspirational way, but there are certain skills that a disabled life hones in you. So I think if you were looking to get into a career in STEM, I would disclose your disability. The way I used to do it was to send in a CV blind as CVs are supposed to be you don't have a picture there you have no physical visible descriptions so I would throw my CV in for whatever technical job came up and when an interview or an opportunity for interview arose I would then disclose you know I have limited there, you know, a lift on site? Or I would ask them to kind of clarify what kind of accommodations were there. And I think the most important thing to me is in any interview I did, I did make it a feature of my interview. I work in medical devices, so I often used the point that I have benefited myself from specialized medical equipment whether it's a chair whether it's an AFO whatever kind of or whether it's crutches like we know how medical equipment can help improve your quality of life so like that is an interest in science that is an interest in something that makes you a little bit different. So I would say there are ways to use it to your advantage. And I think disclosing your access accommodation needs is more important than anything. I don't think anybody should have to disclose their personal medical information. In fact, it's like one thing I really resent about life as somebody with cerebral palsy is like to get access to medical care or, you know, workplace accommodations or basically just equal rights. You must give away so much of your own personal story to leverage instead of it just being this is what I need to make the playing field level. So I think it's about bringing that across to people in a way that you're not begging and they're not saints for offering it to you. But there are ways and means, I suppose, of working anywhere and adjusting accordingly. Yeah, such a great perspective. And I think like so many great nuggets of advice. But one thing that stuck out that you were talking about too was supporting your mobility. And so that's something, you know, especially with CT and some invisible disabilities, it's not visible. So if you go in for an interview, like you are disclosing your disability because it's visual, right? Like it's not something that we can necessarily hide behind because it's just the way our bodies move through the world.
The Quest for Mobility Aids
00:27:07
Speaker
But one of the things that you do to support your mobility is wear an exosim. Exosims have been brought into my life through Katie Yastra. And I thought like, you know, it could be something for me that could support my life. So as we kind of talk about some of the mobility devices that you use, I'd love to know more about your exosim and also that journey of getting one because they're only available in the United States and in a very particular region on the West Coast. So I'd love to hear about that journey and if work kind of impacted your thoughts to getting one. Yeah. So I came across Katie Feathers on Instagram. Katie runs the Cerebral Palsy Strong network of social media pages. I spotted her wearing the exosim and I actually DMed her on Twitter for more information. I always used to tell people it was like the funniest online shopping experience ever. Like instead of going for clothing, I went in search of legs. But it was kind of a total coincidence. I think it was came at a point in my life where my mobility had really declined. But more importantly, it brought about a lot of pain and it feeds in nicely from what we were talking about in this care cliff. Right. So I went from doing a lot of physiotherapy as a child to suddenly doing absolutely nothing as an adult for no other reason than I really didn't understand that I needed to be doing it for my body and the way CP manifests for me. So I had a lot of pain. It was impacting my ability to concentrate, really every aspect of my life so it was we were in the trenches I was googling what jobs can disabled people get and what am I going to do with my life and you know I there was nothing there because there is no number in Ireland to call somebody for you know to get all the obvious answers that are so obvious to these medical professionals that you know where you're not going to walk or obviously your joints will be impacted and it's like well obvious to whom I only kind of found that out after kind of hurting myself you know so I spent a lot of time on the internet came across Katie and I said I'm gonna see if I'm a good candidate and I'm just gonna go for it so I think I found out at two o'clock when I was in a club that I was um being a good candidate for the devices and I said like I just didn't want to ask what if so it was a funny experience like it was a very positive one but like looking back it was a really interesting journey where they were obviously very expensive I did not have the money so I actually crowdfunded to get the devices so I felt very kind of warm and fuzzy and supported by people and I still do like at the time it was kind of amazing people really supported me in going and trying this because obviously I was the first person in Ireland to get them there's since been another woman with CP that I know that has also gone to get the exosym I suppose looking back it was kind of a strange experience at the same time because it did require me to disclose my entire medical history to Google and then there were people local papers writing me. And it was all well-meaning and supportive, but also a little bit strange because you had people who didn't know you writing stories about like tragic court girl needs money for new legs. And you're like, oh, not sure that's how I would describe it. So it was kind of a whirlwind time. And Katie joined me in the clinic to get these devices and they were absolutely transformative for me. So at the time I had kind of pretty much been a full time chair user, which wheelchair has always been a part of my mobility system. I've always used one. I think wheelchairs are literally the greatest thing ever. So in terms of my experience, like I am so pro mobility aids of any shape, size or form. And I think that's a huge thing with the kind of cultural conversation around cerebral palsy is at least in my experience, like walking is the gold standard. Like you have to work really hard and learn to walk because if you don't walk, you're going nowhere, which is like, to me, unbelievably toxic. And it like holds up an impossible ideal. And we all know that CP manifests itself differently in literally everybody. But what it does is it, I think, creates a really negative relationship for people with any form of health. And it's like, you know, this and you must be independent and if you don't walk you won't have that when like when you look at the non-disabled population nobody's sitting down with like a seven-year-old child and telling them oh well you need to learn to be independent because that is crazy they're like all other children learn under this framework of interdependence like you help and I help you. Your mom will help you with this and your dad might help you with that. Whereas there's an obsession with the idea of like independence and doing things by yourself to the point where it's like this pipeline to failure where when you eventually have to use an exosim, a crutch, a chair, you've like failed some some elusive el test and i'm like why make things harder than they already are sit down on a chair like chairs are good i so i'm very pro mobility aids that's such an interesting perspective because i had afos um as a child and i also had a brace that I wore to bed to help with mobility. And through my early teen to early adulthood, I was like, none of that. And so when I had gone to advocate for an AFO at my orthopedic, you know, he was a thousand percent for it. But it also was like, oh, OK, so like you're sure you need this. And, you know, it's coming from that place of like even your care providers are like asking you those additional questions where you almost second guess yourself like, do I need the accommodation for myself? But it goes also into like the dynamic disabilities, right? Like there are some days where like I definitely don't need my AFO. It depends on the activity that I'm doing. And I'm sure similarly for you, there are days that your exosims are what you're using as your mobility aid. Sometimes you decide to use your chair. And I think that is something like it's so dynamic.
Embracing Mobility Aids
00:33:41
Speaker
And I'd love to know your advice to people who are considering getting or starting to use a new mobility aid. I think they like it requires a lot of confidence when you do need to remember that like you deserve to do this. Like it's like they are tools. They are tools that people have. And it all falls in under the language that we use as a society around disability which is that you know it's either blessed upon you by god or curse and like some kind of challenge that you must overcome and actually it's just there and you just are and what like i think healthcare providers and people at large need to start looking at the body and the person in front of them and think about what is good for them not what they think cerebral palsy is or whatever kind of disability like you're not a diagnosis you're a person and just because you have cp that impacts a single leg or all four limbs even though i think it actually impacts all four limbs for everybody just in a slightly different way like it's about doing what's right by your body and for your body and some days that might look like using a chair or a splint or whatever it is it shouldn't be a fight like we shouldn't be at war with our own bodies it's like the only hole they have and even if there are days that I really resent mine like I don't want to punish her harder than like I already have. Like, just take the seat. You don't have to prove to anybody that you have to stand for an hour or 20 minutes. Just take a seat. Like, you shouldn't feel less than anybody else just because you need to sit down or use a cane. Like, it really does not matter. So that's what I would say. Well, I want to get a sticker that literally says that I need to put it on like all my water bottles. Take a seat. Like take take that time for yourself and give yourself, you know, that self-care that you need. So, you know, what's your hope for your mobility as
Ava's Hopes for Future Mobility
00:35:41
Speaker
you age? Because you're talking about all the great things that you are doing um and this is something that I think a lot of people have as thoughts as growing up with uh cerebral palsy um how do you see your mobility changing and what's your hope as you age well it's a funny uh question because I think my relationship with that question is so different now to what I might have even been like half a decade ago like it kind of keeps coming back to what we said about like there are certain ideals and it all comes from you know they come up with an umbrella term for a disorder right because that's what it is we know cp looks so different in one person to the next so it's not that i don't have hopes for my ability but so i want to take my body in every phase that it enters and like kind of meet my body where it's at. So I want to do best by it wherever I am, whether that's ambulatory wheelchair user, whether it's a full-time wheelchair user, that no longer matters to me in the sense that like, am I doing the most to reduce my levels of pain? And what suits me best at the time is what I will use and kind of aim for. I am fairly active. I like to exercise. I think for me, physical therapy has done the most for me in terms of pain mitigation and, you know, keeping my mobility where it is or meeting where it's at.
00:37:05
Speaker
In terms of the future, like I'm happy to kind of embrace what that brings. I think at one point the idea of chair use or permanent chair use would have been like a fear of mine. And that isn't born of my own mind. That is just me taking messaging from other people. And, you know, like we touched on, people really really hate hate chairs well I really hate stairs so um I don't know I don't know what my hopes are for my body in the future but I think how uh we approach health care and like this access to multidisciplinary care would be what I see as key to like me living a kind of healthy and happy life and for people that come up after for us you know I know I like to look to the future and I hope for better for people who are smallies and you know all these little babies born with CP like I want the best for them I want better for them but I also want better for me now like I want better for me now So I think I'm sick of kind of this idea of, you know, farming out my medical information to the internet for solutions. It's like that is actually really demoralizing and like not right. So I did it for a long time because I felt good about like helping other people who didn't have access to what I had access to or like swapping tips and tricks it's like really powerful but it's not right that we should give so much of ourselves away to keep ourselves safe um so I think doctors and sort of medical boards need to do a better job of like they know a lot of these answers and they're not really sharing them with people they're not arming people with the information that they need to succeed and do best by their body so I think what I hope more for my future is less to do with my body by herself and more to do with like what is available and the way we approach care like we need to look at the person in front of us and not just an idea of what we have, ah SCP, in our little minds. Like I think those days are over. and i'm Like we need to do better and I think we can do better. I just think that people are lazy and just see us as a diagnosis and not a person. but's It's such a good bridge to this question that we're asking every single guest on the podcast to.
Advocacy for Better Healthcare Systems
00:39:27
Speaker
What's the number one thing you want to see changed about healthcare for adults with CP? First of all, I would like for it to exist because I don't think there is healthcare for people with CP. I think it's something that we acknowledge and see as pediatric and this idea of it being non-progressive because it's obviously looped in as this brain, like it is brain damage. Let's call a spade a spade here. But looking at the global impact of CP on the body is certainly progressive, like undoubtedly so. We know that we're more predisposed to so many different risk factors for a number of things that let's not list out in this podcast. Let's not bring the mood down. But people should know this. You should not find out at like 25 that you are more likely to have arthritis or whatever. Like I think there needs to be some centralized hub for information. I think we spoke about CP being this global disorder and like it impacts all of your body. I do think, you know, I am scientifically minded. I like data. I like facts. I want to know. But I have to respect too that like not everybody with CP is the same and we need to have this information and resources available to people for when they're ready like I think there needs to be somewhere when somebody is ready that they can seek out this information and it's just there not like me at 22 googling what jobs can disabled people get and like what is happening to my body because google doesn't tell you a lot so it would be great if there were somewhere that when these kind of common issues that arise for adults with CP there are certain kind of pain sensors that kind of go off in all of us and we should not be going down WebMD for these answers and I should not be DMing some random girl on Instagram for these answers either like a doctor should give these answers to us or at least point us in the right direction. I'm not expecting my general practitioner to have an encyclopedic knowledge of CP. Well I should not have to have one either just because you know I have cerebral palsy. I have an encyclopedic knowledge now because nobody else did. So we need to do better with that where there are the right people to refer people on to and when I'm referred to you I do expect you to go away and learn a little bit about it like you know you are a cardiologist you're a urologist you're a gynecologist you can go away and do that homework because you are the doctor. And then you can talk to the other people that I went to and form a nice little multidisciplinary unit where I feel like I'm receiving well-rounded care like any non-disabled counterpart. Because healthcare isn't perfect for anyone, but it's certainly more challenging when you are disabled. And that is what I hope hope for the future that there is more of a global approach to a global disorder yeah such a powerful message and you know you saying messaging a random girl on Instagram I mean that's not a unique experience like I think that should be such a unique experience and I've had that experience I've had so many people that have had very similar experiences um and know that what you want to see changed is a ah very similar theme um across so, so many adults. And I think, you know, we know we're not alone in that stance. But Ava, thank you so much for bringing this perspective to the podcast today. It was so great to meet and connect with you. um And we're looking forward to learning more about your
Connect with Ava Online
00:43:06
Speaker
story. So where can listeners stay connected with you? Yeah, so you can find me on Instagram. So I'll have to spell out my handle because you'll never get the spelling of my name right otherwise. So my handle is avas underscore exosims. So that's E-A-B-H-A underscore exosims. Awesome.
00:43:30
Speaker
thanks so much for joining us today but thanks for having me
00:43:52
Speaker
thank you for listening to this episode of cerebral palsac grows up the podcast
00:43:58
Speaker
-Whaley, Katie Gastra, and Kyle Ketchadorian. Hosted by Alexa Orban, and its logo was designed by Brianna Rachi. We'd like to thank our listeners for being a valuable part of our community, and we'd like to thank Ava Wall for her, time and we hope you'll
00:44:39
Speaker
be