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E24: EDS, Autism, and Sterilization (Rose Hughes)

May 19th 2020

In this episode, we explore ableism across the pond with Rose Hughes (@a.tint.of.rose) from Leuven, Belgium. We discuss her journey with fitness, coping with an invisible illness, getting diagnosed... More

this is disabled girls who lift, we are reclaiming what's rightfully ours one podcast at a time. It's mary Beth Chloe and Marcia bringing you the thoughts and unpopular topics to get you out of that? A bliss comfort zone. Welcome back everyone to disabled girls who lived, I'm over here in northern California. Some of my hosts couldn't make it today, but I've got an amazing guests, one of a good one of our good friends and Belgium local for those of you out there, we're going to talk a little bit about her experience with Ehlers, Danlos syndromes, hypothyroidism, a few other things that are on the list as well as how she got into pole dancing. Super excited to have you rose. It's been a while and we've been needing to talk about these things. Yeah, I think you need like a good day really for all that is me. See this is what we always say, this is part one of 250 episodes that you need to come back to because there is a long asl ist that we need to cover.

Well there is that the fantastic meme that I've seen a few times. It's like when you meet your new therapist for the first time, but it's like a humongous book and I'm like that is like no, for real, you have to have a presentation when you meet somebody for the first time. Exactly. Well, how's it going out there? How's it going in Belgium right now, I cannot complain because the sun is shining and I'm someone that absolutely chases the sun like, I love summer, I'm a summer baby. I was born in Gene, so I hate the winter, I hate, I hate the cold, the cold in zero ways. So the sun is beaming through my window right now and I've got my fan doing so I'm very happy. It's amazing. It's been raining and cloudy, but obviously springtime over here. So it's super weird. Like it makes you think like, are we going to have an extended summer? I don't even know. And I'm such a typical british person that like, it's quite conservative where I live. So people are walking around in normal bring Osama type clothes and I'm just walking around in like little Nike shorts and a tank top, really bad look and I'm like, I'm british, forgive me wait, so what's the lockdown looking like in Belgium right now, you're, you've been on lockdown for four, almost five weeks, just like us over here in the US.

Are they ticketing people if they see you out? Um it's really funny what they consider important here. Um like every Belgium is, it is in lockdown and you do get significant fines if you're caught doing anything you should be doing. Um, and I'm, I'm self isolating on my own. Like I live on my own in a little apartment and I was cycling another day. So I go out for a run or a cycle or walk at least once a day on my own and you can't stop, you shouldn't stop on a bench anything. But I was going through the center of my town and there was this really long queue with like people with huge gaps between. I was thinking, oh my gosh, like what are they caring for? And it was kind of shocked how is that allowed? Like it's allowed. But everywhere else is closed. Like everywhere else in that vicinity was closed with maps and like big signs or the benches are crossed off so you can't use them. But the ice cream shop is open. That's so odd. I've been seeing that too. Like dessert is essential. It's what keeps people alive and I don't know if you're super into like medical marijuana or marijuana in general, but that's like a big thing too.

That's open instead of liquor stores. You get the opposite. Like I have a friend in South Africa who keeps telling me that they, when they went into lockdown, they absolutely stopped the sale of alcohol and cigarettes. So not only have they put people into lockdown, but they're also forcing them through kind of a detox phase. Oh shoot. I felt that I thought that was really interesting. I like the world is kind of repairing itself in a weird way. Yeah. And like not having all the cars out on the streets, like we're, yeah, it's, it's helping our environment a little bit. But did you see that in Belgium, there was, I think it was in Belgium, there was a guy that had his car taken off him because he got caught like three times in a week driving it for zero reason. Like he had no reason to be going, where he was going. Yeah, the police caught him And it just made me think because I was like I said, I've been in a car crash before in Belgium and I was hit by a drunk driver. Um obviously it wasn't me driving cause I don't drive, but uh, it was totally the drunk drivers fault and he could still drive his car for like 12 days after before he got like an official.

I think they're a bit clutching at straws, aren't they? Like they just don't know how to handle this and they just want to make sure that they keep the keep people staying at home essentially. Yeah, I mean whatever whatever it takes because a lot of our people are not listening, A lot of us didn't take it seriously. You know, you have to actually put put all these crazy things in place, especially what they've been ticketing. Some people here and there are some countries, I see they're like chasing them back into their homes with the nationals of the national forces and so naive sometimes that like when it all went down. Um I type texted my parents and I was like, why can't the world just come to one decision? Like why can't every country have one person sit down and everybody agrees that the whole world is going to do it this way. And my mom and my dad was just like, Rose, for God's sake, I don't like it so much easier because the problem was you had people crossing from Belgium into the Netherlands when all gyms play.

Everyone was driving to the Netherlands or like cycling to the Netherlands to use their gym, which then meant they had like three times the capacity. But what's border security like is it super relaxed? And now we've got a travel ban, like now we've got some serious like bands in place and I believe there's absolutely no travel allowed. Our airport is closed. Trains are only running like locally and I think it's only essential travel. So like people who have to go on a business trip to the UK can take the eurostar. I don't know. But yeah, like there's very very little movement. I have a friend that works at the docks and he said it's absolute madness because I think that that they've almost doubled the income that they have coming from other countries in order to stockpile the country. Yeah, it's weird like I had a few, I had some very minor travel plans and I have not yet looked at my refund policy because I don't want to deal with it, you know, I mean I was supposed to go to spain a month to a month ago. Yeah, for my birthday and I finally got a refund for one of my flights, it's only half of it, you gotta fill out these forms and other websites work, none of their phone lines work, but I understand, you know, that's not anyone's biggest concern right now, I gotta take care of our people first.

So, so when I first got to know you, you know, obviously it was through instagram, a lot of us met through instagram, you were lifting around that time, your cycling, now you're doing a little bit of pole dancing here. How did you get into any of those? So when I was, oh my gosh, I would say like it got serious, like, you know, rather than just like the occasional jim trip, it got serious when I went to university, that was in London, I went to Roehampton uli and I did my bachelors there and they had a gym on campus. Uh and the people were nice and like it was, this gym was tiny, like the size of your living room. Um but it had what you needed and like during the day, no one was in it and it was, it was kind of my, I didn't go to class, so I need to do something productive thing. Um and I started lifting and I very quickly fell in love with the kind of endorphin high that you got out of it. I'm someone that, how do I describe that? I need a way of like getting rid of anger I'm a very angry person and the more I lifted the more I enjoyed that.

But I had such significant anxiety problems that I was constantly like battling myself. So there were times I would sit in the changing room and I just couldn't bring myself to go into the gym. Um But I would reward myself that I actually went near the gym. Um And it's just kind of like snowballs from there. And I started following more and more things online and watching youtube videos and like educating myself from the book, meeting more people that were into it and therefore it kind of led to like other areas of lifting. So it wasn't just bodybuilding anymore. I was like really I'm obsessed with dead lifts. So I found out about power lifting and power building and olympic lifting. But the problem was because of my Alexandra syndrome I very quickly learned the hard way that lifting wasn't really suited to me without the right knowledge. Um And then I when I graduated from uni I decided I wanted to get a further diploma. So I did my personal training course for the post called the London muscle academy or L.

D. M. L. D. And M as it's known to me okay. Um And I qualified with them a couple of levels during that time I whilst I was at uni and whilst I was studying my personal training course I severed both of my A. C. L. But at different times which was kind of my first understanding of how I wasn't invincible anymore and realizing that my L. S. Daniels very much presents itself in. I have such a weakness in my tendons and ligaments, I'm very fortunate that I only I don't really dislocate, I just get the odd pop. But I do my bones are stable but everything else in my body is very very fragile. So I recovered from the first a cl break and then and that that is the whole story within itself because I was in the U. S. Actually for that And the 2nd 1 kind of destroyed my life for a small period of time. But I finished my personal training course on crutches and had to do the practical kind of telling them how to do it, do it myself.

Ah So the photos have become quite funny. Um And that that was just it for me. Once I had the knowledge that I needed uh it just took off and then yeah I mean I've had boyfriends that were in power lifting and I've had friends that were into power lifting and I started going to competitions and I got very addicted very fast to lifting heavy only to very quickly realized I couldn't do it. So now we skip ahead to what Eight years later it all started and it's just like the only mental relief that's ever really stuck for me. Uh you know, you buy a pair of shoes and they look good for a couple of days and you love them. But it's not the same as like repetitive li lifting heavy weights. No, seriously. And just that iron everything that it gives you for. And what kind of adaptations do you remember using for E. Ds or to accommodate for that? Well, the thing with Ehlers Danlos syndrome is it's quite cruel in a sense that it can come and go in your life. It presents itself at different times if you look at my mom who also has it.

She was dancing when she was younger, she wasn't there. She was very, very good at everything. And then Around the time she gave birth to my brother, I think he was about 20. She developed significant chronic key syndrome and she's probably gonna shoot me for getting that wrong. I probably got the date wrong. But around the time I was born, she was bed bound and you know, very, really suffering. And we look at it as very much caused by the other Donald. But then she had a period of time where you kind of like recovery in a sense. And that's what I mean about it being cruel and you're like, oh, I get my life back and now my mom is like 50, I'm Sorry Ma'am. Uh and she uses a wheelchair and she has like a ton of mobility aids, like everything you can think of under the sun, but it really helps and it's kind of done the same thing in my life in the sense that I've had times in my life where it really impacted me. So I've uh for example, used wheelchairs for like long distances. My ex and I once went to with his place in Belgium called Paradise, er Paradise, I guess in english.

Um And it's like a giant outdoor Zooey safari thing that they have that you feel like you're in another country when you're there. And we went there and we went to the wheelchair and it was the only way in which I was able to do that that day. But the problem was I was done in a lot of pain anyway from sitting in the wheelchair all day. Um and I felt seasick as well from the way we went around. So It's kind of weird, like I'm at a point now where I was 85 kg back then and I'm now about eight kg. I know you guys don't use kilos and because there's less weight on my body because I am a lot fitter at this precise moment, I'm suffering less in some ways, I just have like the general chronic pain issue. Um but there are a lot of adaptations I have to make to the way that I execute a movement in the gym. So like, for example, push ups are a lot of strain on my wrist, there are a lot of strain on my entire body. So as much as I'd love to be able to do like 10 push ups and clap in the air while I do it, I'm probably never going to try and do that. It's more of a, like on my knee kind of push up.

I I tend to learn the hard way. They're like, I'll do something like an overhead press with a barbell And my physio will be like, really enthusiastic that I'm going to get, like 20 rests out of it. And on the second one, I can feel that I'm hyper extending my shoulder blades too far back and I'm gonna end up with an injury and 99% of time I end up with an injury. So then I just end up floating around mad at myself taking painkillers and anti inflammatories because I didn't prepare myself well, or there could have been like, a better way to, to make that lift or over the last, I've really gotten to know my body in a way that I never thought I would, but it could be fascinating. I think everyone who's probably listening to this and everyone who is part of the like, let's say hashtag disabled misters really has had at some point, unsolicited advice slide into the DM and I've very recently been really considering no longer posting any of my fitness stuff online because I'm so sick and tired of people who have not taken the time to understand me as a person through my page and just send me lifting and have gone, why are you doing this is wrong or Hey, did you notice that your shoulders were dislocated?

Did you notice that your elbows are not normal? Oh my gosh, I've had people comment on photos saying you shouldn't let your legs go far so far back. And I'm like, it's literally how I started and I don't have a choice. It's like saying to someone, Hey, you should sit in your wheelchair and left angle of 90° because you're telling a person who completely knows their body how to control them exactly. You don't know my life well. So in that case, did you, have you been like just training yourself? Did you find your own trainer coach to kind of watch your lifts or program? It's a bit of a mix. So it's 50 50 most of what I do is just from my own, Yeah, like my own education and like I'll write a program and a lot of stuff that I do, I walk in the gym and it's kind of like decide on the day what part of my body doesn't hurt today. Okay, I'll use that. But the other part is that. And one of the biggest reasons why I've remained where I am in Belgium is that I have a fantastic team at my sports physiotherapist.

It's called grit. I'll give them a little plug and they work with Belgian olympic athletes and like I think one of the teams they work with is the Toboggan team. But I didn't even most interested in totally weird the video that I've been seeing. So I think like two years now he doesn't have any knowledge per se about my condition. But he he's very, very accustomed to like recovery and adaptations and like he listens to me which is what's vital and within the team that I have there I have a lady that I see is fantastic who does deep tissue massage. She does like muscle relief. I go and see how we talk about what the problem is that I'm because I'm always suffering from something. Like at the moment I've got like four injuries in my legs and then he very much helps me with like he does like a personal training session with me or he writes me a program that can help rehabilitate whatever it is that I'm suffering from. We've been working together for a long time and when we first met I could barely do one squat holding onto like rope and now the things that he has me doing it.

Like I love it because he smiles sometimes and I see that because he's like thinking of the journey that we've been on together. So I like that because I can walk into that place and it's literally around the corner from me and just say, okay today, my left ankle is really bad and we addressed that and it's like, now I can continue my week without the worry and before I had that I was able to do a lot less. Um so I feel really, really fortunate because obviously a lot of people don't have that in our position. But yeah, like I said, it's kind of 50 50. I really enjoy having independence with my, with my sport and fitness, but I do also have to be told either by my mom, which is a lot or by my trainer or whatever. Like slow down. You're doing too much. This is how you should do it because I am that person that tends to learn the hard way with most things. Yeah. You get excited and you see a big weight and I'm like, hell yeah, I'm about to hit a pr today. Well maybe tomorrow, maybe next week. Yeah, exactly. And it's it's that case that I think, I mean I'm 26 now and I still think I will be learning about my body until the day I die.

Um, but I certainly understand myself the best I have in my life. Uh and something that there's that whole process of grieving what you don't have and being grateful for what you do have. I've been really going through that probably in the last year the most because it was accepting all the things that I got excited about and then realized I couldn't do because I often present very much so like any other person in the gym and a lot of people don't understand That I can do things that I only, I can decide. So where someone might see me doing 10 squat jumps and like really jumping high and landing really hard Until then suggests like an hour long class that involves that. And I'm like, no, I did 10 And 10 is what I could do. I can't do the whole hour long past, but it's, it's a frustrating process of like when I got into powerlifting, I adored it, but it was only like three months before I had to give that up and then running was something I fell in love with. And very quickly that was just way too much for my condition. So it's just constantly finding, you know, ways around the no.

Yeah, well, the great thing about us and you know, the people that we find in our industry is, is you can, you can adapt with your coach or your trainer and tell them, hey, this is what my limit is, I can only do 10 reps today. I can only work out for half an hour today or this is what works for me and my, you know, limitations or it's, it's, you know, me missing a hand. I had work together with my coach to let them know how to properly balance await, you know, for a squat or a dead lift, you know how that goes and you just learn along the way and that smile that the coach gives you after having worked with for six months, almost a year and something finally clicked. Yeah, that's amazing. And then what about paul dancing? How did you find that? Oh my gosh. Uh, I have to admit that anyone listening that has a lot of syndrome is probably going to be very mad that I do pull down things because it's not the safest for your shoulders and one of the most common problems with my type of allergy is shoulder issues and I do have a few minor impingement in the muscles around my shoulders.

But having said that I only do, I can't really just do well before the lockdown one hour a week and I, although I could progress up, I tend to stay in the kind of baby classes because the movements used in the baby classes for beginners, I should should say, um are less strenuous than if we got into the big guns and started doing the really hard stuff that involves a lot more shoulder mobility range of motion. Um it is interesting because I got into paul at university, kind of for fun. Uh, and for street cred and tell in love with that everyone was getting poles in their room, but I wasn't that baldy, but you actually have classes at your university for pole. Yeah. Oh my God, I remember this one time that was like Berkeley, where you at uh we didn't go down very well with a lot of people that we put on a show once which was for charity, like we were raising money for testicular cancer, and there were some female lecturers that just kind of lost, lost it with us um and I think there was a petition at one point I was closed down, it was hilarious, um but we always prevailed because pole dancing has such a stigma around it, um but if you came to a practice it wasn't like a bunch of hotties, it was a bunch of like ran down students with glasses on and I think really crappy music and just totally like not it was not attractive, so yeah, so I got into it and I really enjoyed the fact that it would it would use part of your body, the other exercises don't do, and also it was kind of like it was a way of doing a sport without having to have too much communication between you and another person and it wasn't that competitive and I really don't like competitive sports and whilst I was at uni I was running and helping students who weren't into competitive sports, find their way into non competitive activities, so it kind of was in tight, was in line with that.

And then when I left uni I found a group not apart from where I was living in a place called Putney. So I was doing that once or twice a week and that was when I discovered that the recovery in my knee from my A. C. L. Surgery limited my legs. So there were a lot of movements that involved you being able to bend your leg like Philly around the pole and I would have to like grab my ankle and like wrap myself around the pole. Uh So I used to get really frustrated so I stopped for a really long time and then when I moved here to live and I just thought you know what it's time and I found a class again not far from where I live. Ah And the lady that runs it is I think she's Brazilian. So it's done in english which is fantastic for me, my Flemish stuff and yeah it's just once a week and it's a lot of fun and anytime that my body feels, let's say I'm having what I call a bad body week. Um And no amount of anti inflammatory can help. I won't go like that's the one thing I'll cut because it's just so dangerous for my shoulders. Um But I love it and I just enjoy the fact that mixing the choreography and the different movements on the pole, it's like I am like if you get, if you see me or you see me like during the day, I'm not really the sexiest person, I'm rather more pole, I get this like our of feeling like Beyonce, so it's such a great form of expression.

It it is a you know it's a dance form, it's an art form and a lot of the times it is a competitive form and when I've seen damn good um dancers on stage, I'm just like I don't understand why there is this huge stigma, they're just up there doing a dance and a lot of them are super athletic, you know it takes a lot of upper body work and actually what I was going to recommend is i when they hang from upside down and it takes a lot of you know legwork and leg grip, that's all you could do. You don't need to use your I do, I do you know it's classic with me, I have the biggest, so I spend just a lot of time hanging upside down because once, once you get, once you get it, once you've gone upside down once and you get used to it, you never stop but it's just that first time and I'll never forget the first time I successfully went upside down, I like I was like okay down crying um the next upside down pole dancer. Yeah right, there's never ever be like stood up, just always upside down and then you have these massive legs that are just crazy strong, it's kind of weird like when you say that about the stigmatization around it, I've always had a huge issue with it because I have a few friends that are I mean one of these girls jumps to mind that I I know from my past and she's just the most incredible pole dancer, like she's absolutely amazing and she faces such a backlash for the fact that you don't obviously don't wear a lot of clothes.

What people don't understand is it's not just about being attractive, it's genuinely because if you're wearing clothes you don't stick to the pole and all like but also because it is such a female dominant sport, there are plenty of men that do it but it is majority women and anything that has a big group of women being independent and strong within themselves is going to get stigmatized. Yeah the weirdest thing. Oh yeah it's scare society like oh my god pole dancers are gonna take over the world, we gotta stop that. Oh all of our husbands money is going to watching full dancers now, we've got to stop it. Yeah well what I don't like is when the women trying to get the women um who is the woman that shut you all down just oh my gosh just a random community, it was a lecture from I think the catholic society or something and like I'm not anti religion but I'm not religious myself, I'm not anti religion. Um but it did bother me that it came from a place of life. She had her own religious values and therefore everyone should follow. Um university was, we had a lot of funding cuts at times as well because you know what they told us that you don't want to give them a room, you'd rather give it to the footballers.

Um which was just nuts because I think the money raised during our poll shows more than if not double a lot of like other societies were bringing together, but whatever, I'm not sour, it's fine. No, seriously. And one other thing I want to talk about, I mean you're just your entire society is so different from the american society. I mean as shoot east coast is different from the west coast and we all have different ways of living in different ways of reacting to these, these things like pool or power lifting, you know, was such a grungy and dirty sport and now more and more people are getting into, its more mainstream because like I'm I'm more like I'm more experienced than your your world than I am the european way in the sense that something I have immensely struggled with living in Belgium being british or being multicultural because I've lived all over, but Belgium is quite a conservative country.

Um they always describe themselves as being very much to themselves very, you know, they don't tend to, they're not going to shove their opinions in your face and a very british thing is like you're going to know if I've got a problem because I'm going to say it. Um we are quite tactless. Um so here I did face that I went back to a world of like judgment, let's say misplaced judgment and it's funny because the pole dancing groups that I know of here in the Flemish region of Belgium, so hush hush and a lot of the girls I know that that post there pole stuff, they all have private accounts because they don't their peers to know that they do it. Yeah, well it's kind of like that here still unless yeah, yeah, yeah, it's kind of like that here still and it's not just sex work in general is always going to be stigmatized and you know, pole dancing, Some people consider sex work, some people don't um but the fact that it is sexual and intimate in some way and you know, a lot of times you don't wear clothes or whatever, you're showing a little too much skin, it's just, it's it's got to be normalized a little bit more.

But what about what about disabilities in Belgium, how how are disabled people choose you got? Do they act like you don't even exist, geez dude, I could access abilities, what our accessibility is like, man, I should have to compose myself otherwise I would just ramp um okay, so this is and I'm going to say this before I get yelled at by anyone, this is my experience and it's very much valid. My experience. Belgium is so bad with accessibility. In fact Belgium is what I would consider able ist they have all, you know when you know like the surface of things that you look at like let's say Belgium was a group of people And that group of people is giving 5% of their income to charity and therefore anything, they do. it's okay because they give to charity. Do you get what I mean? Mhm. So with Belgium they have all the necessary requirements. Yes. Ah and therefore that means they're doing enough but put it this way um I don't ever tends to yell in front of my mom and I had never done that and not at her, but other people, I have not done that until I had lived in Belgium and gone around with my mom who uses a wheelchair.

We have threatened to take a lot of places to court because we've gone to venues and my mom has been treated like a second class citizen. It's the health and safety like doesn't exist. Um there are very very minimal adult adaptations made obviously for me having two legs that I use day in day out, it's not as bad, but another example of this is that I am not currently working and that is not because I'm not capable, that's not because I have a fantastic tv something I'm very proud of. I speak enough of the local language to get by uh something that could only be really like made better. But I have to go via, do you have like a job agency that covers most of the, all of the Flemish region of Belgium and then there's like a side chick version that for people who have a diagnosis um because I don't present as any different, let's say I wouldn't say I've had the best treatment. I have really struggled with them but I have been registered as job seeking for a year and a bit and obviously you've got to, you've got to throw into the mix.

That is quite a nationalist country. I am a british person. I don't have a unique special is um and there are a lot of limitations as to what I can and cannot do. For example, I'm also autistic and I know my limitations when it comes to working in a call center environment. I also have some kind of pride and because I've worked my way up educational wise, I won't just take any old work. There are a few things but mainly I really struggle to get work that will accommodate that. Yeah, I might be late to work a lot or I can't start ridiculous hours or I won't take trains in rush hour because I got to sit down etcetera etcetera. There are just these kind of minor things that have to be handled but I have felt such a shame for living here that I had in place in London. So it's kind of in both worlds. It's just, I mean where I live, it's quite built up. It's, it's this beautiful place, it's gorgeous. It's not called the city, but I personally view it as a city because it's big, it's got sharp, it's, it's got everything you need, it's got local parks, it's got, it's got two H three H and M's in it.

So I mean at the end of the day, if I go up and down the main shopping street which is really famous, there's two sides to it with my mom in her wheelchair including pharmacies and restaurants, she can only get in three places and that kind of says it all to me like she can't board a train on her own, she can't, I can't get through the door. I often go to shops and I say do you have a ramp? And they just looked at me blankly and they're like no and I'm just like who doesn't have a ramp in 2020 like just by a ramp. So yeah, no, I mean like I said I have to compose myself because I could literally ramp forever but it's really, really, really bad here and the education is super bad and people are so able and I have gone through In the 11 years that my family has been here. I have only lived here for two years because I had to because the health health care is really good, especially compared to the UK. But the actual stigma of being vocal about the fact that I'm disabled. And also this country calls it handicapped, which drives me mad because that's not a phrase that I use, but it's, it's meant some handicapped, which means people with handicaps.

And honestly every time I say I should because I'm like disabled. And even then I don't love the term disabled because it makes me sound like I'm less able. Um, which I am, but I just don't like saying it. It's it's a tough thing. But I would much prefer disabled and handicapped. And it's another, I mean if you saw my mom you would straight up. So she's disabled. But the local government still don't view her as disabled. So me having any chance of getting, I know I see your face, me having any chance of getting registered as disabled here is like slim to none. So I haven't bothered. Um, the only thing that I get assistance based on is my mental health and my autism. So if my psychiatrist and psychologist to turn around and say yes, she's perfectly stable. I would get everything taken away from me, which is just nuts. If you knew my medical history, I just don't get it at all. So yeah, that's that's kind of the quickest and easiest summary I can give, I hate to be a negative nancy, but there's no way I could get a life. No, no, that ship is real. And for anybody that thinks, you know, we're in the 2020 era where we have all accessibility needs and health care and everything.

Uh he was like, oh it's so good. Like it's, we went to Disneyland paris, my mom and I for like our first holiday together after she got her wheelchair kind of like a celebration thing. I've raised my voice with a lot of people at Disneyland paris, which is supposed to be like the happiest place on earth. But I mean, don't get me wrong, I should say there were some incredible people that made that trip so lovely for my mom, but the, the kind of the things that are most important, like accommodation and transport and advice really, really lacked. I lost it and no swearing in french because there are so many scenarios where I was like, you should be doing better. Like I just get really mad and I think it comes from a place in me that is worrying about what I'm looking when I look at my mom, I'm looking at my future 100% looking at the mobility aids that I'm going to need and that I'm not that far away from uh and things that I consider like on a daily basis. So when somebody mistreats her, it's not only that they're hurting me because they're mistreating my mother and they're being able, it's also that I'm going no, please get better at this because when it comes to me, I'm not going to put up with this and I'm not going to have a mini version of me and there's so many roads, it's going to be yelling for me, I can make you feel very, very vulnerable.

I think Belgium is about, we say Belgium is 10 years behind the more advanced countries and I think that's a nice way of putting it. But I mean if you're saying Disneyland paris doesn't have the same accessibility features like what the hell? That's what they do. They really, they think it was pride. But the problem is is I guess they've just never had one thing that bothers me the most. And I used to work in London doing stuff like this is a very, very, very, very infrequently actually go to the store and ask that person. So instead of asking my mother or I or someone like us how best to plan for people are nature. They go and they just make assumptions and then they're like, well we have a ramp and we have this for the blind and this for the deaf and blah blah blah, so we're good, we're good, right? And I'm there pulling my hair out and I'm like, no, no, no it's still, I mean even here in the US, it's like a checklist for them.

Okay, we have a ramp so we're accessible. Okay, we have an elevator so we're accessible but your elevator isn't big enough. A lot of these wheelchairs, you know, they're much larger nowadays are motorized wheelchairs and they can't fit in them. So what does that mean that they're not equitable and they're like one of the steps only small and like, yeah okay. Like I can lift like 100 and 20 kg but I cannot get this wheelchair up that step. Like it's not even funny and also don't want to put my mom through the embarrassment of having like three people try and it just makes you feel awful or do you think the safety hazards that are involved like okay, let me go ahead and try this. And if she gets injured, we're suing your grass and you're gonna, you're gonna have to put one in anyway. So if you put one in now at low cost Or you put one in after your $50 million dollars in debt, what's it going to be? You know, recently just before the lockdown, my mom and I went on a trip to London it was kind of like a Late 50th birthday President slash I was adamant to give my mom some form of a trip where she would not face disability discrimination or like issues like that.

So I was like, I know, I know London like the back of my hand and I know how good it can be if you know your way around in terms of disabilities. It has a long way to go for things like autism but it's a hell of a lot more advanced than other places in the world. Um comparing it to where I live in Belgium, it's like completely different. So we went to London for about a week and my mom just didn't want to come back. Uh she doesn't like England at all like they are not looking to move back to the UK but this trip to London was so emotionally lovely for her and the treatment she got like, but the biggest thing was that a lot of people in living where I live tend to stay because it's quite, it's beautiful. It's all so a lot of places, the doorways are small and there are stairs because the heritage is there because you know, we can't just knock it down and change it right and that's their excuse and then I'm like, okay well let me just take you on a little guide because I took my mom around London in the oldest buildings you can imagine She got round the whole of Madame two swords which is an old building and it has elevators all over it with a personal galley.

She got around all of the old buildings in the old part of London literally nowhere that we went, she could not get in or go around and they made sure that she had someone helping her at all times. So that excuse in where I live now does not wash with me because I'm like, well London is older than you like renovated since the bombings and live and there's been a huge renovation so it's just not a valid excuse to me and it's, I just won't let it sit. So I sometimes feel like going around with a clipboard and pretending I'm really, really official and just writing down the names of all these places, looking at them and being like not doing good enough. But yeah, I mean as as I am like I talk about my mom a lot, but as I'm someone who I can still carry heavy bags and I can still be there for her when there are periods of my life over the last few years where I've been significantly affected by my disabilities. So you've got like mom and I that need help and we're kind of like looking out for each other but we're a bit like dumb and dumber in those moments.

We stopped, we isolated a lot. We stopped going out as much because it's just so stressful and you know, you won't get the assistance that you need when you're out in public, that's not and they're just not exposed to it. Like if you come here on a holiday. I like to say to people count just count how many people you see who are of color who are not straight or who are visibly disabled Because you will have less than 10. You just won't see it's just so mad when you come from London where you're just surrounded by diversity and you move to somewhere where it's just like not there even in like the cities, it's it's maddening. But I think that's just because everybody stays home. So actually that's the other thing during this lockdown, I go for this bike ride around the really beautiful part of my where I live and I have seen this woman and I shout out to this woman who is using an electric wheelchair and it costs flowers around the wheels and you love that. And she is whizzing up and down these main roads like where the cars normally she looks like having the time of my life.

But I've seen her every damn day and I've never seen this woman before in my life. So it's almost like she's gone woo, everybody's out of my way, nobody's gonna like me off. So I'm going to go ride my electric wheelchair around this damn city all I like I just feel for her. But it must be so freeing like you're saying right now while everybody's on lockdown. Yeah, exercise can you please record that and send it to me that I really want to, I just feel like it just be friends with friends with her. Yeah, No, I mean and what especially okay, like a place like Leuven where they're like, well there aren't very many disabled people, there aren't very many people of color so there's no need to make an accommodation. They've got to be thinking like you in that anybody become can become disabled at any point, get into a major car accident, you'll you'll become old or just anything, this could be you and this is how you have to think this is a framework when you're building a building or starting an organization.

Like you've got a center for people like us and it's it's really bad because living is an Erasmus city. So it has like I think it's like 300 cultures pass through it every year because of all the foreign students come in and there was a huge there's a huge community of people from other countries. It's just like, you know, they keep to themselves and they don't go to the main areas and it's really freaking sad because it's like those are the people I want to meet. Like I want to meet people of diversity. Like doesn't really matter what makes you diverse just as long as like your mind is open but very difficult because yeah, I walk around and I present as like a I hate this term, but like a normal person, I have this like giant like bumper sticker that I could just like put on everything I own that says like I'm not normal to me. Yeah. Well that's a lot of big thing about individual, individual invisible illnesses that, that we always have to come with terms and conditions. You have to walk around with a shirt saying I am right, I am different. This is what I need.

It's actually one of my dreams. I really want to have just a small minor league, maybe maybe a bit bigger than that clothing company and I'm massively the things I want to write on the back of t shirts like I probably shouldn't say some of them right? But I personally want to go and get a T shirt printed myself just for me that says uh I have all these diseases and then just have like all my diseases written in small writing. So people have to get really close and then in really big at the bottom just like f off because I am so sick and tired of people coming up to me in the gym and giving me unsolicited advice like, oh my God, this is quite deeper. I can't, my knees don't work. Like I'm allowed to do this how I want to freaking do it. I know what I'm doing. So I often just wish I had t shirts and just had all these different things written on. Like I honestly just want one that says like um if you can read this, you're too close, please go away. There's so many things. But I would, I would love to have like a clothing brand that just represented invisible illness because often I think people do feel that sense of like I'll go into a place and I know we shouldn't feel this way, but we do, we feel like we have to justify ourselves to the room.

We feel like there are maybe other people in this room that have invisible illnesses, can we be friends? But also how many people in this room are standing there and judging me because I'm wearing Nike shorts and an ATI desktop. But I'm also saying I really have to sit down for the whole hour. You know, like things like that and I constantly feel a sense of judgment. I constantly feel like people don't get me and as much as I don't owe anyone an explanation, I'm always going to feel like I do. So that that's like the concept behind that is I just spent, I've spent so much of my time thinking that people just don't get it because yeah, because it's also like it's so comparable to the fact that my mom only got her wheelchair in the last few years and before that she was just as disabled. She just wasn't sitting down. People now sympathize with her and give her such sympathy sympathy in a way that she never got before or when she uses her crutch to walk small distances. And I'm like, she's exactly the same person she was before she had the visible aid. But it's just because people just didn't, she would say she happy to see this or these illnesses and people would kind of, she's exaggerating now.

She's sitting in a wheelchair and it's like, oh shoot, she wasn't exaggerating. And that is the problem I'm facing is that people often, like if you get me and my mom in the same space, they're focusing on her and her knees. And I'm often like, okay, she does need things, but like, so do I. And they're looking at me like, well, you're not in the wheelchair. Yeah, no, that's that's definitely a really big thing right now who's disabled enough for you to get benefits, who's disabled enough for you to get, you know, or for you to be allowed to compete in an adaptive division or it's, it's ridiculous or even right now with coronavirus and how they're putting a blanket statement overall, young people assuming that young people are not immuno compromised and that we are the problem or that we are not disabled. You know, you're forgetting that it is affecting young people. It's really, really sad. That's another thing we were talking about yesterday. It's this fear that all of us within this, let's see the chronically ill community, all of us are having this thing right now where it's like you're constantly being bombarded by the news that like they're having to make decisions based on a person's health and risk factor.

Like if you go somewhere that is running out of ventilators and you're significantly unwell and there's a healthy person that needs the ventilator and then there's, let's say me who has like Addison disease and Alabama syndrome and blah, blah, blah, blah blah or my mom, like they're going to choose the other person over us and that just like that put the whole of our community into like the biggest fear even bigger than they were already used to. Um and that's something other people just take such granted and that's why it's so irritated when I see perfectly healthy and I say this in quotation marks that you can't visibly see perfectly healthy people are going and having parties and gatherings and I'm like, you are being so selfish, gets sick, you'll probably recover from this and you'll be fine, but someone's gonna have to die in order for you to have that, that that's what they're not getting right and that you don't realize that you're carrying diseases that you don't know about and spreading it around to 34, 10 other people. Yeah, yeah. And the biggest thing right now and you mentioned it a lot is you, I'm sure get this a lot where people tell you, well you don't look autistic, you don't look like my autistic cousin, What do you mean?

And you've done a lot of work with the national autistic society will linked the article of the episode that you were actually involved in. But how, how was that experience for you? You know what? There's this, there's this girl I recently found on Tiktok who's quite young and she's just fantastic. She is stunningly beautiful and she does this short Tiktok, I need to remember her name. She does these short Tiktok things and she just cutthroat gives it to you and she does this fantastic one that I've been sending around to people that talks about how we say this. You know, it's autism is a spectrum and she says, but it's not linear. It's not a linear spectrum because people often say like that, you know, that's high and low functioning, which is terminology, that I just drives me mad. But I have used myself and she says, it's more like a color wheel. You know, like it's not like one case exists in one case is another. And she also brings onto the fact that, you know, you meet someone with autism, you've met someone with autism, you've not met the whole autistic community, but obviously we live in a society where people's exposure to autism tends to be unless they know someone with it quite minimal.

And I even have people who are diagnosed with autism messaging me saying that I'm wrong for the things I say about autism. And I'm like, oh, because you've been brainwashed into thinking that you are incapable because you've been brainwashed into thinking there's something wrong with you. You're just neuro diverse. And when I was first diagnosed, I was a lot older than, but with women, there is a huge factor of marking. And unfortunately a lot of diagnostic criteria is taken from men and male and female, autism is very different and it wasn't seen so, so much. Uh, so I was diagnosed off the back of both. My parents were diagnosed at like 50 49 50 and it was actually because they were looking at me and the trajectory I've faced in my life and the journey I've been on through different labels and that's when both of them got diagnosed. I don't know how we missed this because my parents were so autistic. If you go to a restaurant with us three, it's hilarious because we're all so different. And that is just the whole point is if you put all three of us together, you see how autism can be so different. But yeah, so I got diagnosed, I went through what a lot of people go through the grieving process, um, kind of accepting how much of my life it was just so wrong in my head how many things I look back on and I'm like, oh my God, if only I'd known I would have been treated so differently.

Everything changed for me. And I went through a very liberating process of telling friends and being accepted for it, I was so fortunate with my friends, I'm sure some of my friends don't necessarily believe that I have autism, but they would never say it. They were just supportive. Um, and again, that comes through a lack of exposure. But there was obviously the side of it was like, I was having a lot of hate mail. I was getting a lot of messages online that was like, you're not autistic, you don't look like you say, you don't look autistic, you don't do these things like, how do you even know? It was just really hard. And I had, I had employers in my life basically saying on my face, but they didn't think I was autistic and I know I am like, I am not necessarily proud of it. I'm going through at the moment. You go through a lot of phases with it. I'm going through a phase again where I have very much gone into a shell and I was hiding it again because it's not understood in Belgium. It's very much put down in Belgium, it's very much seen as like, we don't talk about that person with autism and we don't want to hire someone with autism for example, um, there's something here in Belgium that I just got.

Um, and the way they sold this to me was almost like they were doing me a favor. But I see what you think when I tell you this and they told me that if I got my autism diagnosis proven in Belgium because they don't accept my English one that any employer who hired me would have to pay less tax in order to have me work there. And that that wouldn't your faces at all, but that would encourage to therefore hire me even though I have autism and I was studying, I was sitting there and I was like, even though I have autism, that's raising, let's talk about that Because I actually do my job 100 50%. I'm probably going to work harder than anyone else in that office. Two extra hours, probably become psycho obsessed with my job. And I very much learn things quickly and that's not because I'm stereotyping autism, but because I just know myself and all I could hear in my head was ringing in my head was like, even though you have autism, so I've got to like, make this employer want to hire me by them paying for me. Like I'm not smiling about this at all.

I'm finding this extremely rude. Yeah, I mean that's a really big thing that we talked about all the time is that when we have those job interviews and we fill out those job applications, how many of us even Markoff that checklist, you know, how many of us hide it because you know, we'll get that stigma or will look less favorable in the pool of whatever number of applicants even though our CV or resume looks fucking awesome. Why is it that that disability like hinders us it's manning because I mean uh so I left uni and I had one job and I didn't hope it was more like a call center environment. I wasn't I wasn't understanding autism at the time and I had to leave, I ended up in psychiatric care, I was on all sorts of medications. The usual hoo ha. And then yeah, I got my diagnosis and I wasn't really lucky because I then got a job with the national autistic society who were like the leading autism charity in the UK and I'm I think they are incredible and they such good work like raising awareness in autism and I was just on like covering someone's maternity leave and I think I probably would still be working there in some way shape or form had I have not destroyed my knee and had to move back to Belgium but they I work remotely.

So I got to do my job mainly from home. But it did, it did involve a lot of face to face work. But what was fantastic is that you went into these scenarios of them knowing that you have autism ah and you're there to talk about autism. We were using virtual reality headsets to try and help people understand what it's like we were leading presentation and it's funny you bring up employment because when I was working there, the area that I was assigned to was closing the employment gap because it's that's a low sensitive people, People with autism who were working versus people with autism who wanted to be working. And I had only changed by 1% in like a few years. It was really low. So we were doing a lot of like campaigns in line with that. Um I helped out with like online blogs, I was just basically I was just doing what I do every day which is just talking too much. Um but over sharing which is such an autistic thing is over sharing, like we don't necessarily register what we should and shouldn't say. Um and it was so nice because I was completely recognized my autism. My manager Helena was God she was fantastic.

Everyone was so lovely and I don't know how I'm ever going to be as happy as I was there in any other job but he was hoping and I stayed in touch with them consistently after I left. And whilst I was on literally lying on my back having just had surgery again we got in touch and they were putting me in touch with various places. I have been fortunate to be on tv whilst I was working there and all sorts of things I got involved in all sorts of like online media and things like that and they said oh we've got this lady from the Guardian the newspaper who would love to interview because I had gone and got myself sterilized not long into moving back to Belgium and this has obviously been like a really long process and was going to be the most controversial thing I had ever done in my whole life and I knew what I was facing and I was totally ready for it and this was like a few years ago and I'm still the happiest ever about. I've never had a single regret, but I knew what people were going to say and do and what I was concerned about was that people were going to view it, that I being autistic was doing it because I'm autistic and that it was because I didn't want to like have autistic kids or something and I absolutely wanted to clear that up because it was not my view.

So I was so ready for this. I said to the lady, I was like, oh my gosh, yes, like I absolutely want to do this. I would love for you to interview me because I want to get my words out there and explain why I got sterilized and help people understand that. It's not a one size fits all thing all while trying to plug a few like autistic things like people who think that autistic people don't empathize are wrong because it's not true. It's a myth like little little things like that. So yeah, that's how I got involved with that. And it it didn't really blossom into anything specific. I had kind of hoped that those people would read that article then everybody want me and then I would end up with my own tv show, but that didn't happen, but it did get the word out and I did open up my instagram to followers of that kind of niche, let's say. Yeah, I read that article, the one on the Guardian right? Where you talked about all the bad experiences with doctors and health, they basically denied your right to a sterilization because you're too young or you don't know where you're talking right now or it's going to change.

Yeah, because that is their sole purpose in life is to give birth to Children. So yeah, it doesn't matter if you're like, my mom who was basically dying at one point and they said to him, we're not removing your uterus like what? Because it's just maddening and and because I had a diagnosis, autism, and I also have mental illness diagnosis and yeah, I can kind of be a little unstable at times. Ah and I have a history of suicidal issues. They looked at it like, this woman is not capable of making her own decision. And I was like, okay, if I come back in a week and tell you I want to get like, stuff in my boob for like, perception or whatever can I make that decision and they were so for that so I was like so you know you could you could put me at risk by pumping my boobs fall but you don't want to like snippy snip my my ovaries I just that was mind blowing to me. So that was part of my case and the first nurse I saw like essentially was like in tears at how I was treating her because I was like not taking any of her bullcrap and she went and got her like senior he was like the top top top gynecologist and thank God for Belgium because this never would have happened in the UK and yeah and she came in and I and she said fine you know what whatever because she knew I wasn't gonna give up source psychologist and the psychologist literally at the end of the session said to me I have never in my career said this but I think you should get sterilized and I was like she listened she got it and I was like thank you oh my God and I felt so in that instance I remember actually instead excitement I felt guilty I felt guilt for all the women who I knew were not going to get that I felt so bad but I I felt this like almost like imposter syndrome.

I was like why me why did I get this? And yet all these women were messaging me and they weren't getting listened to. But yeah, they definitely stigmatized me throughout the whole process? Like Yeah, but you know, are you that disabled? Yeah, but you have autism. So like can you make a decision? But it's not your choice. Goddammit. It's mine. Yeah. It's literally I was like I will sign a contract that says not one of you is held responsible if I change my mind like I will have to go. But like if I can change my mind because my language I will adopt like it's never going to happen. I can barely look after like an animal. But if I ever ever ever changed my mind it was that was the pinnacle of the anger that I have faced in my life in order to have a voice and it was definitely what gave me the confidence to be where I am now, why do I go through big phases of isolation where I feel ashamed for how the vocal I am in a world that doesn't want to hear it. But then I have these moments where I just feel liberated because I'm like ah I went and made someone sterilized me totally against their will.

Like up until the point they put me to sleep we're still begging me to change my mind like legs open on the table and they're like I'm partying my head just bloody do it. So if I can do that then there's nothing I can't do. So I try and I try and channel that every day ever since. How long ago was this? Just a few years ago, geez okay, so the problem is the article was written whilst I was still with my ex. So he gets a mention in the article. That's why I want to update it cause I'm like I would say 2000 and it was early 2018 because I got sterilized in 2017 and they contacted me the next year. So yeah, early Yeah, you see, and two years later you still haven't changed your mind three years later? You know that I have a bunch of tattoos. I have a lot of tattoos and I do have moments where I get a little sad because I'm like I'm stuck with that. You know, we all have things that we kind of go, we have our moments. But this, this is like sterilization thing. I it makes me feel strong. It makes me feel like better than anything else could. I've never had a moment where I've doubted that. So what you're saying is getting a tattoo is a much larger decision than getting sterilized.

Like I literally bat off my sterilization. Like it's so funny when you have conversations with like let's see like a Tinder or something and you get to that conversation where they're talking about kids and I just point blank go I hate kids and sterilized and many times I think I've been on match and I'm like, okay. But I'd rather just say it how it is. Like I have friends with kids. I love their kids. Their kids are stunning. But like as well as any of my friends will tell you when they send me hold the baby and just sit there like, okay. But it's not a dog. Right? Well, I mean you're and you're not alone. Like I'm noticing that a lot with my friends. Um, and it has a lot to do with, you know, the amazing independence and work culture that um, women are a part of and there's just no interest, no interest now, No interest ever. There's so much shame around it is disgusting. Like we, we kind of find that I think they say one in five women has admitted, I think this is the back when I did the article, that one in five women admitted that they've never spoken honestly about if they want kids, uh in the sense that like they'll say they want kids because that's what they have to say.

Mm Hmm. Or my partner wants kids. So I absolutely need to think about it. Even though, you know, it's like, I know people who are like, well it's just not going to work out between you and I even though we've been together for 10 years. Like I'm sorry, but I really only want my dogs. Yeah. And for a lot of people as well that read the article. I mean you wouldn't believe some of that. I got some wonderfully beautiful messages on the back of this article, but I did a course with anything. When you put yourself out there, I got some hilariously mean messages from some, the cards that had zero education who had not read the full article. Like if they had, there's no way they would have said these things, but a lot of men telling me I was gonna change my mind, which is interesting. Um, but I had like a, there was this little community of people who were like sliding into my DM to inform me that we are put on this. We are put on this earth okay. And I was like, okay thing is if we're going to look at the right, let's talk, I was like, let's talk about this.

But I would get statistics up and I'd be like, our world is overpopulated. If a bunch of us make this fantastic decision to not reproduce, it's really not going to make a huge, why does it matter to this person in like Germany, this guy messaging me, why does it affect your life? There were, there were a lot of women as well that messaged me that were like very but hurt. They were very much like I read your article and I can't have kids and I just felt like it's really disgusting of you. Like just, I don't know why when it's my back, there were a lot of people that were like, and I listen like I feel one of my best friends really wants kids and she can't have kids and we have this discussion, I don't want to hurt your feelings, but like this is my life, Let me do me. Here's the thing. And I said this to this lady then I was like, there are things in place for you. There's adoption. I know it doesn't mean birth in your own kid, but it's still a kid. There's IVF, there's all sorts of treatments and there's funding behind trying to help women who cannot have their own Children.

There's nothing that don't want kids. There's just shame. I mean the biggest thing to is my decision should not affect yours In any way shape. Like I have Children. I definitely want to have kids. And I think it's it is a blessing that women have more of a capability than men to be able to birth another human being. That is that is in many ways a miracle. But some people have 10 kids doesn't it make up for the fact that that person is overpopulated and you're not, you know, if my friend pumped out and other people have five, so there she's done it for me, right? Exactly. Like people were not that totally aside, you know, it being my own decision blah blah blah, people were not actually picking up on my reasons beyond the actual preference. Like, you know, kind of like black coffee that much. So I'm probably never going to drink back unless I have to the same theory for me that I don't like kids, but I like cats, but people were ignoring the other side of it, which was that like a lot of people with Alessandro die giving birth.

A lot of people with pass it on genetically, I have not only Alabama, but five diseases or disorders that can be genetically passed down. I personally saw it as almost like child abuse to be fully aware and I say this from my personal position because there are people I know who have conditions and still both their own child and I'm not judging them, but for me it felt abusive because I cannot handle watching my child. I wouldn't handle it, I would not treat that child, respectively, knowing that I gave them that. And I see that because my mom always says to me that she feels a little guilt she does because if she had known she might not have had kids because she watched her kids behind his wife, she's watched nearly die so many times, she's watched him suffer, she's watched his face stigma. She's watched us just have this really difficult times and she feels the payment times and although it's not rational, I totally understand why she feels that way and therefore for me, it was like I would feels wrong doing this. I can adopt if I want a child, which I don't rather than passed this all on knowingly.

And then this kid said to me one day, if you knew why did you do this? And they could be sicker than me. Like, you know it such a risk. I'd say that I have a friend who has a Los santos and she's had two beautiful Children, one of which does have their difficulties. But they're two beautiful Children. She's very much suffering with her house, but she like adores her Children. So it's not that like nobody should have kids who has a disability. I think that's the worst mentality. But for me personally, and that's what people without getting was it felt wrong for me. Yeah. And you know what your own personal capabilities are as did she, she knows that she was fully capable of doing so with her E. Ds as well. These are personal decisions. And I'm like that woman was addicted to heroin so she shouldn't have Children. And I'm like, well how is that that different to my situation in the sense that like I am going to be a terrible fucking mom honestly, like I just don't have a mother's instinct. I'm selfish and I'm probably going to be off drinking with my buddies and dropping the kids off and it's like at a friend's house, I am just as irresponsible and like I don't judge, I don't judge anyone, but I guess that's the problem is I have this naive mentality all the time that people will understand everything is personal and that they will not put themselves into my situation.

That's just not how the world works. And we know a lot of people who really shouldn't be parents who are not mentally mentally capable, financially capable or have just very, very unstable ways of living to be able to care for another child. And yeah, we learn from those mistakes and we live with it. But if you can avoid that, just mad to me, like people are, people need to sit down and stop judging each other. It's just so frustrating. I've spent my entire life being judged and I'm like, I'm I'm going to give you something to judge like here have this today, but it's a very ostracizing thing. It's very isolating and that's why especially doing this, coming back to that, doing this isolation People like, are you okay? Are you coping? I'm like ah this is like my whole life, I'm just glad to see that everybody's doing it with me exactly like welcome to my world. And the thing is with the cannabis sterilization, I've told people before and they've looked at me with tears in their eyes and they have been like, I'm so sorry and I'm like, no, no, I'm elected sterilized and they're like, what does that mean? I'm like, I I literally paid someone to sterilize me and they just like they have to almost sit down and I'm like, do like and are we still living in a time where we think that's the be all and end all?

Like I haven't just told you I'm dying and and not to mention there's so many Children that need adoption. Exactly. And I've been saying that my mom record me saying that when I was seven, I said mom, why don't why don't we adopt? There's so many kids that have no one to love them. I was saying that from a very young age. So I know I was such a cute little sucker and you know, I don't, I can't actually remember the last time I even considered Children. I think I was in a relationship once where I looked at the person and thought like you would make a really attractive babies. But I can't imagine myself, people say this all the time. You can't imagine self with a kid until you have one. No, no, no, no, no, no. I can kind of see where it would go wrong, but I cannot imagine an existence for me where I would want Something with Me 24 7. I just don't like I can barely hold on the relationship, But at what age does that become acceptable? You know, people look at me, it's like you're so young and like you say that, but I left home when I was 15. I'm not that young and experienced. I've been making decisions for myself for a really long time. So when someone says like, oh, you'll change your mind, you'll get to 35 regret it.

And I'm like, when I'm 35 I'm gonna be like 50 at which point I'm going to own a Harley and be covered in tattoos and it's not your decision. Just honestly just drop it. Yeah, Yeah. But you know, unsolicited advice goes hand in hand with putting yourself on the internet jesus. And it sounds like, I mean it's always a mix. You know, you get a little more support online versus in real life, a little less support online versus it really just depends who's watching and who's because there's judgment everywhere. But there's also communities like ours where we just talk about our own experience, learn from other experiences and that's it with their lives absolutely fantastic. Like I've had a lot of people have, I did sociologist my degree. So I love the debate and I love when people bring up social media, I love it. I am so ready. I have so much ammo and I'm like, I didn't exist as a person in myself until I found platforms like yours, like similar places. Like there's autoimmune pages, there's chronic illness pages just anyone who has normalized not being like everybody else and where we celebrate diversity where we acknowledge it and we educate and we kind of enjoy it.

We make a laugh out of it And that's my attitude. I have a sense of humor with these things like you know, I'm partially incontinent, I make a joke about it all the time. Like I might wet myself. It was kind of the fun thing I do and I couldn't do that until I had social media because the people on social media are more likely to be open to this stuff. And it's the thing I love doing. I love checking into instagram and saying what hilarious stories people have about their daily adaptations they have to make. And also the serious side of it. You know, there are times where I've been significantly low and I've taken the balls of putting it on my instagram story on my facebook and the response is just sometimes it's just beautiful and it just makes you feel so loved in a way that you might not necessarily get in this in the community around you. Even if you have fantastic friends, sometimes you need to give your friends a break. And that's some nice person on the internet, tell you that you're wonderful. Exactly. It's not anyone's burden or your own. Uh yeah. And the beautiful thing about social media too is if we didn't have that, we wouldn't know that we're not alone because the media, the the tv movies, they don't show people like us.

Yeah. And the autistic folks that you see in the movies. It's always, it's always, it's always a male. It's always a guy. I mean, there's something I love, I love watching, like medical shows. So I have in fact watch like the Good Doctor, uh, what's it called? The a word or something. There's quite a few shows that have an autistic representative being played by a neuro typical, which really drives me mad higher. And um, and I've seen a few shows where they've been, you know, using autism in it. It's usually a dude and it's usually super stereotypical, like there's a fantastic, curious incident of the dog in the nighttime. I love that book. But once I got my diagnosis and I went to see the musical, it made me shiver because I was like, oh, this is so wrong. Like there were so many things wrong with the autistic representation. And I was like, I would love to sit down with this with the writer and explain why this is not okay. And I would like it to be a woman. Just so we have one time like someone make me famous so I can have a show about autism for women. Please God. And it's like not helping people to understand.

So then that's the purpose of social media. That is the purpose of the drive behind the things I do. Because if one person lands on my instagram and learn one thing about autism or any of my diagnosis is then it's like job done. Like all of the bad doesn't matter anymore because I screenshot every, every message I get from a stranger on the internet. I screenshot it is bad. And then I tend to block them or have an argument and then block them depending on the day. But the nice, the nice stuff I screenshot and I sometimes share it, but I mainly screenshot it because on a day where I'm feeling really low, I go back and I look at all these messages and there's just some lovely people say they love these things and often people come to you and they're like, okay, I'm not gonna lie. I really liked at school, but I've been following your social media and wow, so much respect like etcetera, etcetera. And I'm like, that's why I do it because now you get why I was weird in school now. You get why I did these things like now you get why you're friends with autism doesn't like you acting this way towards them. Like it's just so important. But yeah, I mean, you know, it's special. Media has, its good and its bad.

And there have been many moments as my followers know that I have deleted and deactivated and reactivated and because it's difficult sometimes you can't, you know, I'm not superhuman. Just because I have an up moment doesn't mean I don't have a down moment. But I always come back to instagram I always come back to facebook owned apps annoyingly because it's just such a world that I don't see outside of my phone and things like this is the stuff that you're doing, spreading awareness just by talking to people. Like you can't get closer than the actual person and that's that's what needs to happen. A lot more of our voices and a lot more of our stories just need to get put on the table because we're silenced way too often in our freaking workplaces, you know, in our own social lives. So this is, this is where we start and it's just the beginning, but we're gonna, we're gonna go ahead and link your instagram page and the other articles that you've written and been a part of so that people get to know you a lot more and get a chance to follow you and follow your journey warning do not open on train or in public.

Um you know what, it's so nice because actually this is a huge thing for my anxiety, like I think we've been emailing back and forth for a while because I was like, I want to do it, but you got to pick a day where I'm feeling like on it and I told a few friends, I've been like, oh, there's this podcast thing that I want to do and I'm like, really scared and they were like, how are you? Why literally Rose? Like that's your talent is just, that is I it's really good. I really, really, really like to think that you know, you never know who is going to land on these kind of things and I have learned so much through the most random podcast. So like I literally had no idea about and I wasn't really interested in but I got interested in because I was listening to it. So that's the whole purpose behind these things and also podcasts as well, like something I was not familiar with until 2020. Um and now I'm like a podcast obsessed person seriously. And it's a new thing now everybody's starting, especially with this pandemic. It's the new thing, very timing here I am.

No, but honestly, I mean it's it's all about really just getting to know how different we are people of humans. It answers those questions, isn't it? Like you know, for example, I'll take you as an example. Like often I think when somebody has something that is like visibly or invisibly diverse, like you in your hand, it's like most people will walk on eggshells around the situation rather than ask you directly because in one thing we're scared to like offend. But in another, it's like is this my place to ask and I think that the benefit of having a podcast like this is your answering questions. People might be quite scared to approach. You know, I have a friend of mine, it took me like four years to ask her if she could see me through her left eye um because she was in a massive accident and she has like she has both her eyes, but like one of them doesn't really move and I didn't really understand like what vision she still had. I just never asked and she never talked about it. And then one day I just did it. I just asked her and she was like, why have you never ask? I didn't want to offend you.

And it made me realize that people don't ask because they're scared or they're waiting for their waiting for you to mention it. Well, Rose don't ever, honestly don't ever feel scared or feel like you need to be on at all times when you talk to us because you're always gonna be welcome. If there's something that you want to just get off your chest, make sure that the world knows you will always have a platform here. Okay? You will always be invited back. Just make sure you had a lot of coffee when you talk to me. We're on such major time difference is hilarious. I know I'm like, oh, my day is ending and you're like, my day is starting. No, seriously, thank you so much. We really appreciate you and you're always welcome back. Thank you for having me. I really appreciate it. All right, disabled girls out. Thanks for listening to disabled girls who left. We appreciate all of your support and everyone who's taken the time to show us some love. Don't forget to subscribe, rate already. Review of our channel.

We're on Apple podcasts, Spotify player, FM, google podcasts and more. You can also find us on instagram at disabled girls who left.

E24: EDS, Autism, and Sterilization (Rose Hughes)
E24: EDS, Autism, and Sterilization (Rose Hughes)
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