Marina

#001 08/03/2021

Welcome on H comme Handicapé.e.s (D like Disabled) the podcast who passes the mic to disabled people because we need to hear them more.
My name is Hermine, I'm 28 years old, I'm neither a journalist nor a specialist, my guests aren't either but we are concerned. By disability but not only. Once every three weeks we will discuss different topics such as : travels, tattoos, the LGBTQ+ community or even TV series...
For this first episode I had the pleasure to chat with Marina

 My name is Marina, I’m 28 years old. I’m a young disabled women and I have brittle bone disease  

We talked about her experience as a disabled women, her experience on YouTube and social media as a content creator and about the importance of representation  One more thing before you listen to her story. I’m aware that this episode is focused on disabled women, and I would to add a little reminder that cis women are not the only ones who have to face sexism and sexual violence. I do not forget gender minorities and will pass them the mic on another episode. And just so I’m sure we’re all on the same page here : Trans women are women and TERFs or any other kind of transphobic persons are not welcome on this podcast. 

TW : This episode brings up the topic of sexual assault 

Before we get into feminism I wanted to come back on your experience as a disabled woman, and the way you felt about your gender...Was it easy for you to feel like a woman ? To feel feminine ?  

So first of all, back in the days when I started to think about the way I looked it was because I was in a center with other teenage girls, so obviously that’s when we start to focus a little bit more on the way we look... But it was hard for me to find myself. Especially during that time when we try to find an identity, a style...And it was really hard for me because everybody around me had examples and representation and I was there like “Ok but who looks like me ? I look like whom ? Where am I ?” And it was hard for me. So yeah I was feeling good in my own skin, I had no issues with that. But it was hard for me to find myself. To find my place. Just to find a place, yeah I think it’s that.  Now it’s different because I’m older, I evolved, I grew up and I found myself as a woman. So obviously it’s different. But I think for example nowadays in 2021, it might be a little bit easier for young people. Because with social media you can find more representations.  Now you have Youtube, you have a lot of platforms where very different people can express themselves and that’s what makes things interesting.  When I was younger we had nothing. it was just the beginnings of blogs and it always was the same kind of people, it wasn’t very “deep”. Yeah it wasn’t exactly very useful tools like we have now.

Do you have anecdotes that could illustrate your life as a disabled woman ? 

So that’s the way I feel things, but for me personally the way I see it, it’s a double edge situation. Either people are going to treat me as if I was a kid and really infantilized me. Sometimes they won’t even let me speak. Or on the other hand, some people are going to sexualize me and consider me as an object because I have a particularity and they’re attracted by it. And it’s very tricky because they should just consider me as a woman. A woman who has things to say and who wants to live her life just like anybody else. That’s all. Without treating me like a kid or like a freak cause being hypersexualised when you didn’t ask for it...  

Yeah you already had to deal with fetish, that kind of person ?  

Yeah I already met some in real life and since I make content on the Internet it kinda exploded... A lot of messages, a lot of people asking me for pictures... Nothing really inappropriate but just people telling me that they have a thing for disabled people. I respect that but I didn’t ask for it so I don’t see why they come to me like “Hey you!” No, I'm just doing my thing on the Internet. I don’t wanna talk about that. I’m not interested.  

You had a YouTube Channel for almost 3 years... What kind of comments did you receive ? Cause you were talking about disability like a lot.   

Well, weirdly I had a lot of positive feedbacks on my videos. I had a lot of questions. Most of my audience were able bodied people that wanted me to talk about different topics. So I was talking about sexuality, about my everyday life, about the disease, more specifically my disease...And more generally about disability and all the issues that come with it. And also I really wanted to insist on the fact that even if disabled people have to deal with specific issues and problems, at the end of the day disabled people have the same life that everybody else. That’s what I wanted to show with my channel and it was also what people wanted to see. So I didn’t have any problems with this channel. I had a lot of good vibes. It was nice. Well, not all the time. But we’re gonna talk about that later, I believe I saw a little question...But it was ok. For the most part it was ok.  

And then you stopped your channel a few months ago...  

I stopped my channel simply because it was a full time job that demanded a lot from me. And also because a year ago I was diagnosed with a kidney disease. I had to go through a lot of surgeries and I was really really tired. That plus the pandemic...It was really too much to handle. And to be honest, and I’ve been very honest about that with my followers...It’s that when you create content and you see that the platform always highlights the same kind of people...And that the people that follow you are not even sure to see the video in their feed. It’s disappointing because we take time to work on something who”s supposed to inform people on important topics and even people who subscribed to your channel don’t see the video. So it’s discouraging, it’s very discouraging.  

So now we’re gonna get closer to feminism and we’re gonna talk about Me too...  

So yeah that’s the negative comments I was talking about just now. So I was following what was happening on Twitter at that time. And so yeah I went through something that was and still is very traumatic. Even today, even years later. And I wanted to talk about it but on the other hand I wasn’t thrilled about the idea of sharing this on social media. Especially because I was seeing a lot of backlash happening for the people that were sharing their stories. They were sharing  really horrific experiences and then were being trashed on the public stage. So I was a little bit scared. But in the end, after talking with people around me I decided to make the video. And I was just sharing my experience, I didn’t say anything mean or harmful about my aggressor. I wasn’t judging them. I was just addressing the fact that we needed to talk about it so that topic stop being so taboo. And to create more prevention so people can become more mindful when it comes to sexual assaults Unfortunately the video had been shared on Twitter and then...Then it was the beginning of the end. I was receiving waves of negative comments. And it was the first time that I had to deal with insults on social media. And it was very hard. Especially when we express ourselves on such a personal topic. It was really hard for me. My closed ones even had to moderate my comments and then I didn’t post any videos for almost eight months. Because I couldn’t deal with that amount of violence. 

First of all, thank you for talking about this.  Me too for me...Actually at that time I was seeing all of these hashtags on my Facebook feed, and I could have definitely add mine, but I didn’t. I didn’t because... I don’t know... I think I was underestimating all the violences that I had experienced. And I was comparing my experiences with all the stories that I was reading and I didn’t feel legit to talk about mines. And in fact...It was only a few months ago that I realized that I almost got raped. And that I experienced sexual harassment way more often than I thought I had.  

According to an investigation of the European Agency for Fundamental Rights published in March 2016 61% of disabled women have experienced sexual harassment against 54% of non disabled women 

That’s traumas. There is also the part where you’re in deny. You don’t fully understand what’s happening when it’s happening. And sometimes even a long time after it happened you will think about it again, and have flashbacks...It can manifest itself in a lot of different shapes and forms. People who haven’t experienced that. That had the chance to not go through that kind of traumatic experiences...They can’t understand. The impact it has on your life. And the impact it has on the long term, not only on the moment. That’s what makes it so difficult. You have different periods of time where you deal with it pretty easily, others not that much and sometimes not at all. Where you rehash a lot, where you’re questioning everything...Asking yourself : “Maybe it’s because of me ?” So many different questions that turn over in your mind. And it can eat you from the inside. Even physically. It can affect you physically. I know a lot of people that had to deal with a lot of disorders following that kind of event. And people who haven’t experienced that, don’t think about it. They don’t know what it is. How it feels like. And I think that’s why it was so hard for the victims. Once again after sharing their stories they had to deal with another form of violence on social media. You open up yourself on a very important topic where you think you’re gonna help changing mentalities and the end, not at all.  

So now we’re going to pass on the feminist side of the Force...First of all, do you consider yourself a feminist ?  

Yes. Yes, yes,yes. Since forever I think  

Really ? How did you first get into feminism ?  

Well, I’ve always been interested in that topic. And what you need to know about me, it’s that I have three brothers. And it’s true that, at some point...We’re in childhood, everything’s fine and then teennagewood arrives, our body is changing...And I remember very clearly that my brothers had a special status and me a different one. For example they could dress a certain way, act a certain way...And me...First I wanna say, because I know she’s going to listen to me...It’s not against her, but my mom she was more protective of me. She used to tell me things like : “Be careful don’t stand like that. Be careful don’t dress like this. Be careful you need to stand that way cause you’re a big girl now”  I don’t think it came from a bad intention. Looking back on it I think she really wanted to protect me because she could see that my body was changing. I was a young girl, becoming a young woman and she wanted to protect me. And it’s around that time that I started to ask myself a lot of questions and compare myself to my brothers. And then I think we’ve all experienced that...When you arrive in middle school, when we start to change...All the kinds of comments we can hear. So that’s how I first got into feminism. At a very young age. I didn’t have the words at that time. I was saying things like “I’m a feminist” But I think I was already one. Now even more.  

(laughs) Yeah I think the older you get, the more feminist you become (laughs)  

Yes exactly (laughs)  

Well yeah it was similar for me I guess. I think I’ve always been a feminist but I wasn’t aware of it. Or I had that very negative image of feminists like : “ They’re hysterical they just hate men” and now I’m like : “ Yes. So what ?” (laughs) No but for the past few years it has been really life changing for me. And it feels good. But...But...And I think you know where I’m going with this...We need to talk about the inclusion of disabled women in feminism.. Do you feel included and represented ?  

Absolutely not  

(laughs) Voila. End of the episode. Thank you, good night (laugs)  

Yes exactly (laughs)  No but...I’m joking about but (sighs) I don’t know. Sometimes it annoys  me. Like really deeply. Sometimes it upsets me. I don’t really know what to think about and where I stand on that subject. Several times I tried to draw attention on this topic by using social media like Instagram... I tried to get in touch with big instagram accounts to tell them about that issue. About the fact that disabled are absolutely not represented or at least not enough. And when they are represented it’s always with the same kind of people, and the same type of disabilities. Don’t get me wrong I’m not saying that not all disabilities have to be represented. Each person, each disabilities are worth of interest and must be put under the spotlight so we can inform people, change mentalities and so all disabled people can have representations. I’m not saying that a wheelchair user must receive more attention than someone with an invisible disability. I’m just saying that I’ve noticed that there is a certain type who’s maybe a little bit more under the spotlight than others. On big feminists accounts. I’m not gonna say little accounts because for me they’re really allies. Big accounts are also allies but the dialog is... We’re groping. Several times I tried to tell them that they should show a bigger diversity of people. Even if it means bringing other people to talk about it. Because obviously we can’t know everything and I completely understand that they can’t talk about it. And it’s not really their place to talk about it anyway cause they’re not concerned by disability. But they really should try to...Yeah to listen to us. 

Definitely yeah. And I like what you said about the visible and invisible disabilities. Because very often we have this idea of disability with just the wheelchair. When actually...For example myself, I have a visible disability. So I have a powered wheelchair, and I also have cognitive disorders that are unfortunately very often forgotten. When actually people with hidden disabilities deserve to be represented as much as we do.  

Exactly  

And so, what would like to say, if prheaps some feminist are listening to us right now... 

Well, just what I keep saying on social media over and over again...We need to be heard. We need to be understood. And we need some support. And when I say support I’m talking about all those people who are always about feminism, sisterhood...about all those things. They need to put us on the front line. We need to create a dialog, we need to build something. Really. I think it’s really important.  So I don’t make YouTube videos anymore but I keep making content on Instagram and more recently on TikTok. And I also created an account with my friend Anaïs from the blog Blogueuse à roulettes. We made an account called @atypiquementbelle which is a platform for disabled people, but not only. Because our goal is to include other people. Because if we ask other people to hear us and to include us it’s not to then put other people in boxes and push them away when in fact they also need representation and to be heard. But yeah, that’s really it I think. We need representations. We really need it. It’s very important.  

I don’t think we realise how important representation is until we start seeing people who look like us in the medias. I remember the first time I saw the Netflix series called Special. It’s a show about a guy who’s disabled and also gay. And who’s played by a disabled actor. That’s also something very important. And so we share the same disability. On a different level but still, the same disability. And it was quite disrupting because he was saying stuff that I could have said. On one hand it felt really nice but on the other hand it was really weird.  

Yeah of course, because we’re not used to it.  

Yes exactly. But yeah it’s really important. And actually it makes a perfect transition to the final question...Which is : Do you have any cultural recommendations like movies,tv shows, books, or podcasts...On that subject.   

Well, movies, series, no absolutely not. Because the only movies that I’ve seen...I’m sure you can find some that are very interesting and that I don’t know about. But it’s really difficult for me to watch movies or tv shows that talk about disability because I feel like it’s always the same storyline. It’s a disabled person who’s bitter and sad, who can’t do anything. And then suddenly an able bodied caregiver arrives and who’s going to open up their life and give them a wonderful life. And also the disabled characters played by non disabled actors. Well that’s another debate but, yeah...I don’t really have any movies or series recommendation. I would say more like people on social media for example. So there is my friend Anais @blogueusearoulettes. There is @douceurcerise ? I don’t remember exactly but I’ll tell you later. Who’s a mom who also has brittle bone disease. She talks about motherhood, about disability, femininity.... There is Goncha @nanaroulettes. It sounds like Anais but it’s not exactly the same. Who also talks about disability, femininity... Our account : @atypiquementbelles. And then there is my social media : @marinamorelloh on Tiktok and Instagram. Where I talk about all the topics that we talked about today. And then there are a lot of very interesting disabled people on social media. Unfortunately you really need to look for it. That’s the problem.  

Yeah that’s the problem. Well I’m not on TikTok yet but I feel like I’m gonna join you before the end of the year  

I’m happy because I see a lot of disabled creators on TikTok who make content on everyday life, on disabled bodies... It’s super interesting and it’s really nice to see. 

Ok. Yeah that’s great. Well, believe me or not but I have a couple of recommendations. And one of them is actually a movie. But I totally agree with what you said earlier. You really need to dig deep because, mainstream representation like The Upside, and all the very “pathos” storylines where the guy is going to die at the end of the movie...No. No. We don’t want that kind of stories anymore thank you very much.  

Yeah exactly. Where you know his life is miserable and suddenly an able bodied person comes into his life and then suddenly everything’s become beautiful and extraordinary.  

Ah yes ! As if we couldn’t be happy without non disabled people ! (laughs)  

Exactly (laughs)  

So the movie recommendation I have it’s a little treasure that I found on Netflix during the first lockdown and I felt a little bit as if I had found the holy grail. It’s a japanese movie called 37 seconds where the main character is a  young disabled woman (played by a young disabled woman) who’s trying to explore her sexuality and to become more independent despite an overprotective mother. It is really well made, the story is very beautiful and it’s very rare to find a movie that talks about these topics and with an actress who’s concerned by these topics.   And I have another recommendation. It’s a book which was published recently, maybe you heard about it. It’s a book called “Mister T et moi” who has been written by Elisa Rojas.  

Elisa yes.  

Who’s a disability advocate and a lawyer at the Paris bar among other things. And now a writer with this first book 

I’ve met her on Twitter back in the days   

So it’s an autobiographical novel where she tell the story she shared with that mysterious Mister T. And it’s really a “feel good” read because I really could relate to it. And it’s so funny. I think it was the first time that I was laughing like that while reading a book. But at the same time it’s also very politicized. And I recommend it also because it’s very easy to read. I mean for me who has ADHD, reading books is clearly not the easiest thing. And for once this one is very accessible. So yeah I recommend it.   

Thank you so much Marina  

Thank you. It’s nice to have such interesting questions for a change and not the usual ones like “How do you do to eat ? How do you manage to go out ?” (laughs) 

Yeah definitely ! (laughs) Well, that’s why I made that podcast , to have a conversation from disabled people to disabled people. And even for me it’s nice to talk to people who really know what I’m talking about and not only talk to my able bodied friends and do pedagogy. It feels good. Definitely.   

And thank you for listening to this first episode of H comme Handicapé.e.s (D like Disabled)  Thank you to the illustrator Dandy Doodlez  Thank you to my brother Julian Garnier for the website hcommehandipodcast.fr. Website on which you can find the transcript of this episode in French and English. And also all the cultural recommendations and references quoted during this episode. If you wanna know what’s happening with the podcast you can follow @hcommehandipodcast on Instagram. And if you have some questions or if you wanna share your thoughts on this episode you can also write at hcommehandipodcast@gmail.com In the meantime we meet again on March 29 for the second episode where we will talk about disability and traveling. 

Cultural recommendations :

Movie : 37 Seconds (2019)
Directed by Hikari
Available on Netflix

Book : Mister T et moi (French) (2020)
Written by Elisa Roja
Published at La belle Etoile

References :

"Violences against women" Investigation of the European Agency for fundamental rights

Special (2019)
Created by Ryan O' Connell
Available on Netflix