The Intersection of Gaslighting and Ableism - Part 2

Content warning: Mentions of racism, ableism,  suicidal ideation

In part 2 of their conversation, Mary and Emee discuss growing up in Middle Eastern families, not being "American enough," Emee's style, COVID and mental health.

Emee is a disabled fiction and non-fiction writer, vintage jewelry maker, and business owner. She has thirteen chronic illnesses and is neurodivergent. She aims to build a life that is a culmination of all she loves while refusing to sacrifice any part of her cultures, her writing, her disabled pride, or her affinity for vintage fashion. She navigates life with a peculiar sense of humor, a cane, and desserts.

You can follow Emee on social media here and here.

The Politics of Disability was named Best Interview Podcast at the Astoria Film Festival in both October 2022 and again in June 2023.

Transcript

[music playing as Mary speaks]

Mary: Hello everyone, and welcome. My name is Mary Fashik. I am the founder Upgrade Accessibility and your host. I’d like to thank you for joining me today, at the intersection of disability and politics. The road ahead can be a bumpy one, so buckle up and let's navigate this journey together.

[music playing]

Welcome back. Ready to find out where this conversation goes? Good. Then buckle up and let’s go.

Emee, I was so excited when I found out how much you and I have in common–that we're both Middle Eastern; like that was so exciting to me to find that out. And the more we talked the more we were like, “Oh my gosh, that happened to me too! This happened to me” And I don’t know if your experience was similar. But for me, growing up in a Middle Eastern household, the woman who raised me told me that I always had to be better than my non-disabled counterparts. Because that was the only way that I was going to be taken seriously. And there’s a lot of expectations that come from our culture, about: you either have to marry rich or you have to be a doctor, an accountant, a lawyer, and make a ton of money, or you won’t be considered successful. And I think there’s a layer of nuance there. Because, we’re expected to navigate ableism, ableist society, our disability, chronic illness, and do all that on top of it.

Can you share some of your experience in terms of culture? And I think it’s interesting, as you and I were talking previously to recording this, that we both feel a disconnect to our culture. But at the same time, we’re tied to our culture. So, it’s really so difficult for us. Like, I don't speak Arabic. You don't speak Arabic. And then were judged for not speaking the language. But yet at the same time we’re expected to do things, but maybe we're not expected to do things, because we’re disabled? What are your thoughts?

Emee: So, my family situation is extremely bizarre. So, I am half Egyptian and half Austrian, and I was raised in America. Me and my siblings are the first ones to be born here. My whole family on both sides are all immigrants. When I was a child, I lived with my Austrian grandpa, my Austrian grandma, my Austrian mother, and my two half siblings who had a different dad.

My mom was around but wasn't super interested in being a mother and was also really hostile and abusive. So, I had a really complicated relationship with her and in general, I spent the most time with my Austrian grandmother. So, it's weird because my grandma was Catholic. My grandfather was a really hostile atheist, [laughs] but my mother who is white, converted to Islam when she was in college.

And so, I lived with my Austrian grandparents, but I was raised as a Muslim by my mother. And it was hard too, because my grandfather, who was extremely, extremely racist, because he came straight from Austria during World War II, was like an actual Nazi, really hated Middle Easterners, really hated that we were Muslim. And so, we had to hide that we were Muslim.

And so, we would have to like pray in the closet and like not make a sound when we woke up for Ramadan. And really couldn’t express any of our Arab or Muslim side. So it was really weird because like at my grandparents’ house, it was like very Austrian, very European. I was definitely very whitewashed. But then when I was outside the house with like, my mother's Muslim friends and her Arab friends, I was fully in Islamic culture, Arab culture. And then I would kind of come home and then have to like flip back. So, it was kind of like being a cultural pancake where I was flipping to one side and then flipping to the other, and I could never just be both at the same time because it was dangerous for me to do so.

And then when I was 13, I moved in with just my mom and my half siblings and her abuse and hostility and racism got a lot worse. And then when I was 24, I came from California to the Midwest, where I live now. And I cut her off because she was really dangerous. And so going through all that, it definitely led to an identity crisis, especially because I am light skinned and I have green eyes, but I have like this very classic Arab hair.

I do have a lot of Middle Eastern facial features, so it's like I never was white enough and I was never brown enough. I was never Arab enough. But I was never Austrian enough, I was never American enough because I was raised by immigrants who did not raise me like an American. They raised me like a European. [laughs] And I was just always so mixed up.

And I think for me what it came down to was I just didn't fit anywhere. And so, I always had to prove. “Prove that you're Arab or prove that you're Austrian. Prove that you're American. Prove that you're disabled. Prove that you're not so disabled that you don't count as a person.” Again, my whole life, it felt like I always had to prove who I am, what I am, and always had to base my identity off what others were demanding of me. And that was really hard. 

And then on top of that, like when we went to the Masjid, the Masjid we went to a super clicky, kind of like a high school. I didn't really fit in with any of the other kids. I was bullied constantly because I looked different. I acted different. I was not as physically capable as they were.

And so, I didn't really feel at home there. But I also didn’t feel at home with my Nazi grandpa who hated Arabs. Right? So, like, I didn't have a safe space then as I got older, like you said, in Arab culture and my religious upbringing, the way to escape my abusive household, my abusive mother, was to get married.

But I was always told “no one wants to marry you because you look weird. You act weird. You’re disabled, no one wants a sick wife.” So, I always just felt so trapped in everything and I always felt afraid to divulge in my Arab culture because I was told I wasn't good enough, but I never fit in with white people.

I just–it's almost like I felt like a ghost where I was just invisible all the time, where if I was visible, people were afraid of me or didn't know what to do with me. And that's really hard to grow up in because what people need most when they're growing up and figuring their lives out is community and cultural identity or identity with like other things, you know?

And I never had that. And so it's only this year when I reconnected with my Egyptian side, when I found out that I have this whole other Arab family that had been looking for me my whole life, that I was kept away from. My first thought when they met me was, “Oh, no, they're going to hate me because I'm disabled. They're absolutely not going to love me” 

And thank goodness I was lucky that my sister, my cousins and my aunt do accept me even though I'm disabled and mixed race. But it's kind of sad that my first thought when being reunited with my family that I didn't even know I had was, “Oh no, they're going to hate me because I'm disabled.”

And disabled people are not okay in any culture really. And so yeah, it's been a whirlwind, just trying to figure out who I am and getting to the point where I'm no longer feeling like I have to prove everything to everyone all the time, because that's such a burden to have to carry.

Mary: The people who raised me were also very very racist. And it’s odd that you and I continue to have these things in common. But I was raised in a very racist household also. And I would go to school and I wasn't American enough. And I would come home, and the woman who raised me would say, “You’re so American.” And I didn’t have a peanut butter and jelly sandwich–I think I was like 10 years old before I had one. That’s not something we had in our household. We didn't have loaves of bread–which in our house were called American bread. We didn’t have that. I didn't have mac n cheese until I was an adult. I remember I was in fifth grade, and this white girl said, “You don’t know who Bon Jovi is?” And I was like, “No, do I need to know?” [laughs] You know?

Emee: Because that's like the real test if your American is if you know who Bon Jovi is. [laughs]

Mary: Well, I grew up in the 80s, so yes, it was. You know? But it was like, you’re either not Middle Eastern enough, because you don't speak the language, you don't connect with your culture or you're not American enough. So, like growing up, I was obsessed with Brady Bunch reruns. And I wanted to be blonde with blue eyes. Because to me, blonde and blue eyes meant I would be American and I would be palatable to everyone. And people would like me better than my dark hair and dark eyes and brown skin–especially because I was disabled. Because I always felt like the white disabled kids were more accepted in school than I was. 

Emee: Yeah, I definitely feel that. On my Instagram. I talk a lot about how I spent most of my life like wishing myself away. Especially when I was a kid, I had the same thing. I wanted to be like a tiny, thin, light skinned, blue eyed, blonde girl. Because that was like the epitome of beauty and acceptance, especially because I'm so tall. I'm six feet tall, and I always been kind of talkative and loud, and I have big frizzy hair and skin that's like light skinned, but still has an olive undertone.

So I don't have white people light skin. I have Arab light skin. And I was just everything wrong, you know?  And then I would have friends who again were like these tiny, perfect, subtle girls who fit better everywhere. And it always made me feel like I was literally like an alien from a different planet. Or like my whole life, people would ask me, “What are you?” Like I’m not even a human because I'm mixed race. And I think it's interesting because for the longest time, I felt like being mixed race and being from an immigrant family was so different compared to my disabled journey. But in reality, it's really actually super similar because again, I'm never good enough. I’m never meeting the expectations of what other people want me to be.

I’ve spent so much of my life wishing I was not disabled or wishing I was not mixed, or wishing I was white or wishing I was, you know, this or that. And like, it's very similar for me, just feeling like I never belonged anywhere. And yeah, with my Arab culture, I've never been shy about my Arab culture. But there's definitely always been a disconnect, especially growing up in a really racist household.

Now that I reconnected with my Egyptian family, I'm starting to reclaim the Arab parts of me that I really love. Like I love Arab food and I love Arab music. And I wanted to learn Arabic when I was younger. But no one would teach me. And so, it's like that disconnect wasn't entirely my fault, but for a long time it felt like it was my fault.

And I felt guilty about that. And now I'm realizing that it's not that it was my fault, but I was really whitewashed by my Austrian grandparents because they wanted me to assimilate. And so, like in our house it was very European and not American. But when I went out, we wanted to make sure that I didn't act like an immigrant and I acted like an American.

So now I feel very thankful that again, meeting my family that I didn’t know I even had most of my life, I'm starting to kind of mend my connection with my culture. And I think also being mixed and being disabled, I felt like, well, maybe I'm not allowed to reach into that part of my culture and maybe it's not for me because I'm not fully Arab or because I'm disabled.

And that has, like we talked about, a whole other part of my identity that is sometimes rejected. And so, I think now at 31 years old, I'm just now learning that I can be Austrian, I can be American, I can be Arab, and I can be disabled all at the same time. I don't have to sacrifice one for the other.

And if people force me to, that's their problem, not mine. And I deserve to claim every part of me. I don't deserve to have to shy away from any part of it. And I think that's really important. And I think a lot of people who are not mixed or not disabled or aren't from immigrant families, kind of expect you to just choose one.

But I'm a varied person. I'm an intersectional person, and I think that's a beautiful thing. I don't think it's a bad thing anymore.

Mary: It’s definitely not. All of my [official] paperwork says “white,” because again, I grew up in the 80s. And it was like, you were white, you were Black. And I think it was about mid-80s when they started to put Hispanic on paperwork. So, all of my paperwork says white. So, I grew up thinking I was white, but I knew I wasn't white. Because I didn't look like white people. But I didn't know what I was. I’ll be 45 in August. It wasn’t until I was 42 years old that I realized I am a woman of color. And it’s okay for me to say I am a woman of color. 

And that came from doing Ancestry DNA and finding out where I truly came from, and seeing that I have African–deep African roots. And saying, okay I’m not a Black woman, but I am a woman of color. And claiming that identity very proudly, when I was told that I should not be proud of that. When I go in the sun, my skin gets very dark. And when I was in school, and we would go on field trips. And I lived in Miami, so it was hot. So, I would always come home about a half a shade darker than I did when I left the house in the morning. And the woman who raised me would be so upset with me. She would say, “Oh you look Black now.” And I would get in trouble if I wore tank tops on field trips, because she didn’t want me to get darker. And I realize now how beautiful my brown skin looked when I would get sun. But it’s taken me all these years to understand that that’s okay. So, I’m happy that this is you now in your 30s and not in your 40s like I am. 

Emee: Yeah, I think it's interesting because, you know, especially as conversations about race are more and more common now, like what about Mexicans? What about Asians? What about everybody else? [laughs] You know, it's kind of weird that it seems there's Black people and there's white people and that's it. And like, there's the rest of us that are kind of in this in-between.

And I get frustrated. I've actually started to look into why it is that Middle Easterners are on the American census put into the white category. Because we're not white. We don't get treated like white people. And its actually erasure happening for our culture, which is dangerous because like, it doesn't tell you what our race is going through.

Or like in Los Angeles, they did this study where like 40 something percent of people in the ICU who claim to be white were actually Middle Eastern people. And that's a huge problem because we need to know what the struggles of our race are when you don't see any of that, when you're logged in with just white. And so, I find that really disturbing.

It affects our health, it affects our identity, our success in America because it is erasing us. And America has a really big problem with associating light skin as American and dark skin as un-American, no matter what. And if you're somewhere in the middle, you're not treated like a white person, but you still get erased into being called white.

And that is really, really problematic for me. So, I'm aware that I definitely have light skin privilege, and colorism is a huge issue in every culture where people who are lighter skinned have more colorism privilege. That's just how it is. So, I have no problem identifying that and understanding that, but also being light skinned does not equal white privilege and doesn’t equal being treated like a white person.

And so, when light skinned people who are Middle Eastern get locked into that, all the things we go through, all of our identity, gets erased in America. And I just have a big problem with that. So, I think it's walking a fine line between being not white enough or being white enough and how you’re treated. Because every single person who meets me treats me completely differently, because they don't know what I am. And that's not something that white Americans have to go through.

Mary: And here’s an interesting tidbit for people who don’t know, but Lebanon is actually in Asia. And I was born in Lebanon, so technically I am Asian. But if I said that to the average person, they would look at me and say, “You’re not Asian because you don’t look Asian.” But literally the country I was born in is part of Asia. So, I think we could talk about this for hours. There are so many nuances. 

It’s so complicated, but I want to move onto something a little bit lighter, more fun. I love your style. I admire it. I think it’s so amazing. I love 50s 60s vintage. I love Marilyn Monroe. I have Marilyn Monroe plastered all over my office, so I love your style. Talk to me about your style and what influenced your decision to have that style.

Emee: I grew up primarily with my Austrian grandparents, so there was like a generation removed in between us. And so, I grew up with a lot of old people stuff. So, like before school I would watch I Dream of Jeannie and I Love Lucy and Bewitched with my grandma. [laughs] And then I would go to school and have no idea about like anything modern.

And so, I kind of lived in like this weird like Austrian time capsule where like, they never had like anything but like rotary phones. Like we only had a computer when my mom got one. Like, we really lived in, like, this little vintage time capsule where my grandparents were just totally uninterested in modernizing anything but that, you know, affected my personality and my style a lot.

And so especially between being disabled and being a very tall girl, modern clothes never really fit me right. And I always admired 1950s, 1960s fashion because it was just so colorful and like big dresses and crazy patterns and all this stuff that was for my time, growing up in the 90s, was really different. And I was already different, so I was like, well, it makes sense that I would vibe with a different type of style.

But when I was in high school, if I dressed like a 1950s housewife, I would have been bullied more than I already was. So, I ended up gravitating more towards punk and like goth clothes, and my mom actually became convinced that I was satanic, cause I just wore black all the time, [laughs] as she was very concerned that I was like, a Satan worship or whatever.

But I just wore a lot of black and I listened to a lot of punk music. But then as I got older, I kind of lost that a little bit, and then I didn't really know what I was. And since I was a kid, I always went back to vintage fashion where I just vibed with that fashion so much. But one of my problems, especially being on Instagram, was that whenever I looked up into fashion, I was not able-bodied, tiny white women wearing vintage clothes.

And I was like, “Well, okay then this is just not something I'm allowed to do.” And then I happened across this account called Sewrena (@sewrena_), and I saw this gorgeous, dark-skinned woman wearing vintage clothes that she made herself. And I was like, “Oh my gosh, look, it's a non-white person that's like killing this look.” And I messaged her and I would, you know, start asking her random questions like how would you wear this?

Or,” How would you wear that?” And at first, I thought I was annoying her. I was like, she probably does not want anything to do with me. Well, now she's one of my best friends on the planet, [laughs] and she really is the first non-white person I saw in vintage fashion that made me realize that I could also have the look I wanted.

And so, she really inspired me. And then finding her led me to find other people that were disabled and non-white in vintage fashion. And it's kind of funny because one of the biggest hate comments I see a lot on Instagram with non-white people wearing vintage fashion is, “Oh, you're not allowed to wear that.” And it's like people tend to forget that mixed race people, non-white people and disabled people did actually exist in the 1950s, but they had to hide themselves.

And so now I dress like a 1950s housewife and I'm mixed race, I’m visibly disabled, and to me it kind of feels like a giant fuck you to everybody because I wasn't allowed to be visible back then. Like being mixed race was literally against the law. I like disabled people in the 1950s were stashed away, you know, like bags of potatoes in their rooms and never seen because it was seen as a giant shame to have a disabled person in your family.

So now it's like, okay, I'm going to dress the way it makes me feel comfortable, makes me feel proud and gives me confidence. And yeah, if you think that I didn't exist back then, it's just because you weren't looking. And that's, again, something that's very easy for you to Google is “Did disabled people exist in the 1950s?'' and the answer is yes, they did. [laughs]

Like it's not hard. I think my vintage fashion has given me so much power and so much strength and so much confidence because I look how I want while still being everything that I am. I'm not hiding any part of me. And it's kind of an act of resistance that I think is really cool and it's something that just gives me so much joy.

It’s all Sewrena's fault is basically what I'm saying. [laughs] That I ended up here and I'm very grateful for that. And I'm grateful for our friendship, too. So, yeah, it just it all culminated in who I am now. And it's only the last year where I have begun to really dive into looking how I want. And, you know, between being six feet tall and mixed and disabled, people are already staring at me and giving me weird looks all the time. So, I might as well dress, like I'm in a different time period, because if they're already looking, give them a show, right? So that's kind of where I'm at, at this point.

Mary: Well, if they’re looking, it’s because you're beautiful. I love your style. I’m kind of envious of it. Like I said I’m like, I love Marilyn Monroe. I love that time as well. I always am like, “Oh I wish I could time travel and go back to that time period.” But again, yes, we always existed, but no we weren't always in the public eye. But disabled people have always existed.

Emee: One thing I'd like to mention that I forgot because I kind of just rolled [laughs], is that when I watched I Love Lucy, she was actually the first vintage person that I really gravitated towards because it was the first time I ever saw a mixed race couple on television. Desi Arnaz had a really thick accent, just like my grandparents and my mom had.

So, I vibed with their family so much, cause their family looked like mine. And I had never, ever seen that before. And that was such a big deal. And then on top of it, Lucy herself, she dressed like a princess with A-line skirts and all these beautiful clothes that she acted actually quite masculine. She was really physical.

She was really not afraid to make weird faces, dress up like a man, do all these crazy things that a lot of women back then didn't do. And so, I also vibed with her personality a lot because I was always seen as so weird and so different, and she was also really weird and really different, especially for her time.

So, I think growing up and idolizing Lucille Ball and everything that she was kind of helped me feel a little more comfortable in my own skin. And now still like I have a picture of her behind me and I still look up to her a lot because so many things she did were seen as kind of unacceptable back then, and she just did it anyway all while wearing a big skirt.

So, I feel like if she could do it, I could do it too. [laughs]

Mary: I find it funny that people that you and I both admire are white women from like the 50s and 60s.There’s a conversation in there somewhere, but we'll save that for another time. Let’s talk COVID. I want to hold space for our community when it comes to COVID and our mental health. Because a lot has been said about non-disabled mental health throughout the pandemic. But very, very little, if anything, has been said about disabled and chronically ill individuals’ mental health, when it comes to the pandemic. How has the non-disabled community’s attitude during this pandemic affected your mental health? 

Emee: It's affected me a lot actually. So, I've always known that eugenics has been deeply rooted in our society. It's never really been subtle, but since the pandemic it's become much more blatant, much more widespread. Even people who describe themselves as like really liberal fighters for equality are suddenly really comfortable with saying really eugenicist and ableist things. And so, I feel like that is really disturbing.

And I actually wrote an article about this on my Instagram because like you said, I got so tired of seeing all these articles about how hard it's been for able-bodied people and not a single article about how hard it's been for disabled people, so I wrote my own. When it started I kind of had this weird little glimmer of hope where I was like, maybe with all this mass infection and sickness, people will suddenly have more compassion for disabled people and maybe like, you know, finally make people understand us a little better and look out for the most vulnerable in their communities.

And of course, that was very naive to think because it all went to a dumpster fire very quickly. [laughs] But as time has gone on, it really has made me feel forgotten, worthless. And, you know, being disabled here in America, Social Security already makes you feel pretty worthless. So, to have that happen more was really hard. I've been isolated from just about everyone I love for two years because most people I love don't live in the state I live in and I'm very grateful that I have my partner that is with me as much as possible.

But I've been essentially cut off from all of society and no one seems to care that I'm gone and that hurts. And then when we talk about the fact that almost a million people are dead because of COVID and our failure to respond to it properly at this point, every minute to myself, I'm just trying not to be lumped in with that number because it really seems that that 800,000 is just a number and not 800,000 individual people, many of which are Black, Indigenous or disabled people.

And that is really disturbing. So, my depression definitely has worsened. My anxiety has definitely worsened. I think it's also really hard because for anyone who has obsessive compulsive disorder, like life is already terrifying. And my obsessive-compulsive disorder mainly focuses on germs and me getting sick because my whole life I've been high risk for everything. I've been hospitalized for viruses that other people would fight off easily. 

And so, I've always been high risk, not just with COVID, but with flus, with pneumonia, with respiratory infections, everything. I am high risk. I have had to live my life afraid and on guard the whole 31 years I've been alive. And now with COVID, and especially with the blatant disregard for human life, has made my obsessive-compulsive disorder even worse than it was.

And I get frustrated because a lot of able-bodied people, the way they're living now is how people like me have to live always. And we will have to continue to live that way after COVID’s over. And no one seems to be really thinking about that. And so, it's just frustrating. Like it really feels like the disabled community has been turned invisible because our lives are not as important as capitalism or vacations or concerts.

And it's like, I think you were the one that posted it a while ago. It's like disabled people also like going on vacation. Disabled people also like seeing their family. Disabled people also like going to concerts, also like going to restaurants. We're human beings. So, it's like when all of it is focused on, oh, it's so hard for able-bodied people to miss these things without any recognizing that we also miss those things and we also need those things, it’s hard. 

And I've lost a lot of friends and I lost a lot of faith in my own community and it just hurts. And I tell my partner all the time that I just don't know whenever this ends, which I hope it eventually does. But whenever this ends, I don't know how I'm supposed to integrate back into society and act like my life was nothing to people for all these years.

You know? It's like, how do we move on from that? And I don't want to be bitter my whole life, but I mean, god, when you're treated like how disabled people have been treated and like also Black and Indigenous people because they're going through a lot of same things, it's like, how are we supposed to just like go on after that and pretend like everything's okay and everything's normal because it's not. This is not normal. None of this has ever been normal.

Mary: There’s always been a divide between the disabled and non-disabled community, but the pandemic has just deepened and widened that divide. I personally don't think there's any bouncing back from that divide. They showed us their true character. We know that our lives are not worthy to them–that our lives are deemed less important than their vacation, their concert, whatever else. I have been talking about COVID rage. I experienced some of that this morning. It gets to be overwhelming when it’s been two years and you're just getting the constant message of “We want to move on with our lives. We don't care if you stay home forever.”

Emee: Well, yeah, like, that's the thing. Like I said before, it's really become kind of an us or them sort of thing. And I don't understand how you can look at someone who maybe just looks a little different, sounds a little different, needs more help, care, whatever, and be like, “Oh yeah, well, they don't need that stuff, but I do.” Like I have never understood in any sense how a human being can look at any other human being, whether it's based on disability, skin color, whatever, and think that they're less of a person. Everyone needs love. Everyone needs social interaction. Everyone needs adventure and breaks and stuff. And like when I see able-bodied people say like, “Oh man, I just really needed to go on a break. Like, this has been so hard for me.” It's like, I need a break too. I would love to go on vacation right now.

I have needed a break since this thing began and before that. And I think another thing people don't always recognize is that some of us…like COVID is not our biggest problem in our lives. It's just another problem. Because my life was so hard before this started and it just made it harder. And while everyone has suffered a lot through this, there are different levels of suffering.

And I think that's really being ignored. And for me it was especially hard because I had to have a life-saving surgery–what my nurse said was one of the hardest surgeries a human being can have. And I needed a lot of help and a lot of support, and I couldn't get it because it wasn't safe for people to come to my house.

And it affected with COVID, when my immune system was really at an all-time low being in that recovery. And so not only did I have to deal with COVID, but I had to deal with already being disabled, already having a lack of care, and then having this life saving surgery that could not be put off. And COVID impacted every other hard thing in my life.

And I honestly don't know how I got through my recovery because to be quite honest, there were a lot of days where I was just like, I just can't live anymore because I was mostly alone in unimaginable amounts of pain. And it seemed like no one cared. And it just hurts so, so much, you know? And I know, like so many people who love me, would have been here if it wasn't for COVID, but they couldn't come help me.

And it broke my heart every day. So, for a lot of us, COVID isn’t the main problem, it's just the exacerbator. And that's really impacted me permanently.

Mary: I want to validate everything you said–all of your feelings. I think so many of us in the community feel the same way. And you know I’ve put off medical appointments and like important appointments. And while the average non-disabled person may be missing vacation, I’m missing vital healthcare. And that impacts me. And I think–this is for the disabled and chronically ill community–the recovery and I don’t just mean the physical recovery, but the mental and emotional recovery that we’re going to have to go through when this is finally behind us is going to be very difficult and very very long. As we wrap up, is there a message that you would like to give the non-disabled community?

Emee: Yeah, I think this was another question that I just really had to think super hard on because there's lots of messages I want non-disabled people to hear, but that's why I have my own Instagram, right? So, I think my biggest message to the non-disabled community today is that I shouldn't have to prove that I'm disabled enough for you to care.

I've never understood this, like, able-bodied instinct to, like, minimize, gaslight, or doubt someone's disability, whether it's visible or not. I know part of it, I'm sure, because we make able-bodied people feel uncomfortable and like see their own mortality. But for all the extra unpaid work that comes with being disabled, proving myself over and over again should not be one of the tasks that I have to also not get paid for.

I’d also like to note that in my experience personally, it seems that able-bodied people often seem to think they deserve access to disabled people fully, unconditionally. But nobody deserves access to anyone else, regardless of their race, religion, gender, disability, whatever. You don't have unconditional access to my medical history, my body, who I am, and I don't owe you an explanation for why I exist in this place.

Like whether you see me online or in person, I deserve to be in a space just as much as anyone else does. And if they can't understand that, or if they have a hard time understanding that, it says a lot more about them than me and my disabled body. Like that's the biggest thing is I'm so tired of being questioned for existing.

I deserve to exist as fully and as loudly and as completely as anybody else. And if you don't get that, think about why that is, because that's a problem for them to figure out, not me to have to prove to them that I deserve to be here. That's my disabled message. [laughs]

Mary: I want to thank you for joining me today. This was amazing, as I knew it would be. Thank you for sharing yourself and your story in this space with me today.

Emee: Yeah. Thank you so much for inviting me. It was such a pleasure to get to know you, sort of, in real life. [laughs] This was really great. So, I'm just so honored that I get to be another step in your journey to success. Watching you succeed is such an honor and I'm just always going to be a cheerleader for you.

Mary: Thank you so much for joining me.

[music playing while Mary speaks] Thank you for joining me for this episode of the Politics of Disability Podcast. As you navigate your journey, remember: disability is political; disability is messy; disability is not palatable--nor does it have to be.

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