Episode 12: Jameela Jamil

Episode 12 Show Notes

In today’s episode, our hosts Erin and Lily are joined by Jameela Jamil, who has Ehlers-Danlos Syndrome (EDS) and has been an advocate bringing EDS into mainstream vocabulary. After our hosts introduce themselves to Jameela, she shares her own views about her disability. She was diagnosed with EDS when she was 9 years old in the 80s, when no one was familiar with the condition. Because most women aren’t diagnosed with EDS until their late 20s or 30s, unknown risks are a challenge. Jameela notes the major difference in how she was treated in crutches or a wheelchair vs. without them as her major source of inspiration behind disability advocacy.

When it comes to reversing the stigma around mental illness and disability, Jameela explains that representation is everything. There is a huge need for the media to portray characters who also lead complex, rich lives outside of their disabilities. Then, Jameela shares about her experience with the Easterseals Disability Film Challenge. She recounts the wholesome atmosphere and how much she would have appreciated something like that when she was younger. There is a real drive for society to want to hide people with disabilities away for their differences. This is all funded by capitalism, the system which has a huge fear of anyone who steps outside of the boundaries. This is why Jameela ultimately decided to start her own podcast where she can freely voice her own opinions. Speaking of the ways capitalism shuns people who don’t fit its strict standards, Jameela highlights her new exercise movement called Move for Your Mind.

Jameela explains that when she was younger, she felt totally alone and isolated. However, realizing that conditions similar to hers were actually quite pervasive is what inspired her to the advocacy path. If we don't continue the conversation around disabilities in public, the abusive systems will continue to exist. Her belief is that exposing these systems is the biggest step to destroying them. Before wrapping up, Erin and Lilly share about their own goals within the industry. Finally, Jameela speaks to finding the balance between the politics of representation and the pleasure aspect of life. She is learning to accept that she doesn’t have to sacrifice her own sanity to break through every single glass ceiling herself. In closing, Jameela shares what people most often get wrong about her.

Learn more about Jameela Jamil and "I Weigh."

Transcript

Lily Newton:

Welcome back to another episode of Everything You Know About Disability is Wrong. We are so excited for today's episode.

Erin Hawley:

I know. I can't believe it. This is like... I'm so happy for you. You have no idea.

Lily Newton:

Truly-

Erin Hawley:

This is amazing.

Lily Newton:

Truly the guest we have on today, I've adored her for a very long time, and when we started this podcast, it was like... I think I referred to it as my pipe dream a million times to have her on. When we reached out, I just assumed we were just putting it into the universe and maybe years down the line, we'd get to have her on the podcast when we had bigger followings and this. But she was very excited to come on and her team was wonderful in helping us coordinate. So without further ado, our guest for today's episode is Jameela Jamil. Adding an applause sound because I'm so excited. It is an incredible episode. I'm so grateful for Jameela for coming on and having just a wonderful conversation.

For those of you who don't know, Jameela Jamil has Ehlers-Danlos syndrome and has been a truly wonderful advocate bringing EDS into mainstream vocabulary. EDS is one of those things that not very long ago we thought was so unique and rare. And so there were a lot of people, especially women who did not receive diagnoses for it. And I, myself included, learned about EDS through Jameela's advocacy. EDS has to do with hypermobility. I've recently found out that I'm hypermobile and am in the process of being tested for EDS and things like that. So this conversation was quite healing for me just to get to talk to someone who I admire so much and has been through what I'm currently going through.

It's a really incredible episode. Stick around. I do want to note for this episode that talking about EDS and autism and things like this in this episode, we use the phrasing invisible disability a lot, which is something that I've used in my vocabulary for a while. But I recently watched a video from Kaelynn Partlow, who is the first guest on this season of the show. And Kaelynn beautifully explained the fact that just because you can't see something, because you're not aware of it, doesn't mean it's actually invisible. And that things like... The way she phrased it was something along the lines of when you lose your car keys, if you're looking for them, they're not invisible just because you can't see them. And then she talked about how if you know the signs and symptoms of certain things, you can see them. It's just about knowing what that looks like.

And I think about when it comes to neurodiversity a lot too, that as the world becomes more equipped to know what certain neurodiversities look like, maybe it is actually seeable. I certainly use the phrase invisible disability talking about EDS and my hypermobility is very visible. I can't raise my thumbs without them going back all the way. And I'm incredibly flexible in weird ways. And my knees always lock. So these are things that you actually can see. And I just wanted to note that because I think one of the cool things about the disability community is this willingness to learn and adapt vocabulary. The thing that Kaelynn said in the end of that video was that a better phrasing is non-apparent disability rather than invisible.

So that's all just going to say that in this episode you'll hear that I say invisible disability a lot, but moving forward, I'm changing my language to incorporate non-apparent rather than invisible. And I was really excited to get to have this moment and say that on this podcast because I think that it can be hard to learn new words and to learn that something you're saying is wrong or outdated.

Erin Hawley:

Totally.

Lily Newton:

Yeah, I think about people who still think that you should say differently abled instead of disabled.

Erin Hawley:

Don't say that by the way.

Lily Newton:

Yeah-

Erin Hawley:

Like, ever.

Lily Newton:

Don't say that. So listeners who are learning. That might be new to you, and that's okay. I am part of the disability community and I'm telling you right now that I'm changing my vocabulary. So this is a great example that there's nothing wrong with admitting I was using language that is now outdated or no longer used by the community. So yeah, that's my little spiel that I wanted to do for this episode. I'm so excited for our listeners to get to listen and hear this amazing conversation we have with Jameela. Let's get into it.

[Music: Oh my goodness. You are such an inspiration. Wow, you really are. You're so strong. Can I pet your service dog? 1, 2, 3, let's go. We're artists, parents, teachers, good guys, bad guys, students, leaders, I’m not your inspiration, yeah, I’m fully who I am. Got my own expectations that don't fit into your plans. I'm not your sad story. So I wrote it in this song. Everything you know about disability is wrong! Everything, yeah, everything you know about disability is wrong!]

Lily Newton:

Listeners, we have a very exciting guest on the podcast today. Welcome to Everything You Know About Disability is Wrong, Jameela.

Jameela Jamil:

Hi. How are you?

Lily Newton:

Emotional. I have been taking deep breaths for the last hour trying to just collect myself. I am so excited for so many reasons, but just genuinely, you mean so much to me. I am Indian and growing up felt like I didn't have a ton of Indian women who weren't forcing beauty standards down my throat and telling me what I was supposed to look like. And when you entered the scene, I felt like my life changed and I Weigh has meant so much to my sister and I. I think you're really, really incredible and I'm so grateful you're here today.

Jameela Jamil:

That's so sweet. Thank you. I'm so thrilled to be here with both of you.

Erin Hawley:

Yeah, I'm really excited. I've watched you on The Good Place, which is wild because I don't watch a lot of TV, but my partner was like, "We have to watch this." So I did. And I just fell in love with it.

Jameela Jamil:

I'm so happy.

Lily Newton:

Erin is very picky when it comes to comedy, so that's a big deal.

Jameela Jamil:

Yeah, good. I'll take that high praise. Thank you.

Lily Newton:

So we were super excited to have you on the podcast today, especially to talk about the intersections of different type of disability. I'm autistic and have struggled with mental illness my whole life, and I also recently genuinely because of a lot of your activism have learned that I'm hypermobile and... Got a lot to talk about there. Erin, if you want to give a little bit about you.

Erin Hawley:

Yeah, I'm Erin. Hi.

Jameela Jamil:

Hi.

Erin Hawley:

I have muscular dystrophy and anxiety and, yeah, I've had that my whole life, so I'm used to it and it's not a huge deal to me.

Lily Newton:

Yeah. And we really were excited to have you on the podcast because one of the things that is our agenda with this podcast that we're trying to really share the message of is that all of these things, mental illness, chronic illness are disabilities, and there's a reason that we have been kind of stigmatized to not use the word disability, but everything from wearing eyeglasses to autism to muscular dystrophy, these are all things that need accommodation and need community care. And so you've been really vocal and willing to speak about having EDS, which is one of those not really talked about disabilities. So just interested in your thoughts on what it's been talking openly about that and how you feel if you've always considered it an illness, disability or how you accepted this in your life.

Jameela Jamil:

I think in certain times of my life, it's been worse than others, but I was diagnosed when I was nine years old by Professor Graham in London at the Great Ormond Street Hospital. So I was hospitalized because I had dislocated something at sports day. And I dislocated several things at sports day and they didn't know how a child could dislocate so many times. And I'd been constantly dislocating. Since I was a baby, my shoulders would just slip out of their sockets at the age of about two, and then my legs wouldn't work properly. So I'd had problems all along and no one knew what it was because this was the eighties, so no one had heard of Ehlers-Danlos syndrome. I was super lucky to get diagnosed at nine because it probably saved the rest of my life because I am so tall and I'm so broad that I would make a great contact sports player, but I also would've died of internal bleeding or my bones would've broken or I would've dislocated my neck or something. So it was really good, and I'm very lucky that I found out at nine.

The reason I say that is because most people, especially women because our symptoms are dismissed, they don't find out until their twenties or thirties and then they've already taken a lot of risks. I knew never to drink alcohol. I knew never to take drugs because I didn't want to be... I was already so clumsy because I have dyspraxia, very severe dyspraxia, so I crash into everything. It's like a fucking Tom and Jerry movie, pardon my French, but it's a nightmare. And I fall down the stairs all the time. I have something called POTS where every time I stand up I get dizzy. I faint a lot of the time. And severe allergies that just come and go, that can close up my throat out of nowhere with something I used to eat. Or if I used to be around candles, sometimes I can become allergic to them and then six months later I'm fine. It's not the hardest disability in the world, but it is a dangerous disability, especially because of the internal bleeding that sometimes you can have with Ehlers-Danlos, I have the type 3. And it can be a very unpredictable condition that is like I wake up in pain, I go to bed every night, swollen, my legs are twice their size every night and I'm in pain. But I also recognize that amongst the Alas Danlos community, because I had access to that information so young and I knew how to look after myself appropriately, and doctors have taken me seriously because I had that diagnosis since the age of nine, I've been relatively lucky. But it does make me want to use... There have been times in my life where I've been in a wheelchair and times where I haven't, and I want to raise awareness about the fact that I was not given opportunities when I was in a wheelchair that I was given when I wasn't in one. And I'm the same exact person with the same brain, the same face, and the same heart and the same capabilities pretty much aside from maybe physically, but how differently I was treated in and out of a wheelchair or in and out of crutches is why I feel so passionate about disability advocacy, which I've been doing pretty much since I got into the industry.

Lily Newton:

I think you're an incredible advocate and it's just really wonderful that you talk about it and acknowledge the privilege of the early diagnosis. You bring up the eighties, but I think that there are people today still dealing with that same just misdiagnosis, especially as you said, women just constantly not getting answers.

Jameela Jamil:

Thousands of people have reached out to me to say they only found out they have either benign hypermobility or they have Ehlers-Danlos syndrome because I shared the symptoms on Instagram and TikTok and then they went and got a diagnosis. And it's mad that it takes some random actress who name-drops on The Good Place to give people more insight than their own doctors. But that's the importance of advocacy, it's the importance of podcasts like this and the work that you guys are doing at your company.

Lily Newton:

Yeah, I think that that's something that the EDS and autism community has in common where especially women are finding out their advocacy and finding out how their own brains and bodies work through people on the internet, not through their doctors. And I think that that sometimes gets met with a lot of disbelief, but to me it makes perfect sense that we would figure out ourselves with each other and with common symptoms. And I am one of those people that I'm sure is in your DMs saying, "I had no idea what this was." And looking back, it's not not seeable, they say the invisible disability, but I broke like nine bones between fourth grade and senior year of high school and was constantly in slings and things because I was hyperextending my knees and arms and just getting hurt. And I look back and I'm like, "Wow, I never once considered that there was something wrong." I had just at such a young age accepted that this was what life was, painful and breakable.

Jameela Jamil:

I just got jokingly blamed for everything. So I was klutz, was one of my nicknames. And so that's just what that was and that's fine. I'm just so, so, so grateful because I'm someone who's very in denial about my health a lot of the time because I don't like... And I got told a lot of my limitations very young, and they were like... At the time, they didn't know there was a difference totally between EDS3 and vascular EDS, which is a much more serious type of EDS, which has a very short life expectancy. So they weren't sure which one I had. We're like, "You might die in your forties." So that's a really intense thing to be told as a child and being told that I might have certain limitations on the life that I want to live, for example, and what I would be able to do for a job.

I've always felt like however best I can, within reason, I would like to make decisions by myself about my own limitations. I don't want to hear it from some doctor when I'm 10 years old. And so I've always been in quite a lot of denial and I'm really glad that I had someone really, really warn me about how to live carefully so that I didn't make mistakes that would've made me an even more pain.

Erin Hawley:

Yeah, and I think a lot of coming to understand your own disability because there's a lot of shame that is attached to disability that even if you have all these symptoms, saying out loud, "I have EDS" or, "I have a disability" is still really uncommon because there is that negativity attached to disability-

Jameela Jamil:

Which is ridiculous because we're the biggest legends. Anyone who goes through difficulty or suffering during the day and the day is harder for you and you still show up and you still turn up to your podcast or you do whatever or you go on that date or whatever you do in life that involves peeling yourself out of the little cave you want to hide in. It's like you're stronger than everyone.

Erin Hawley:

Yeah.

Lily Newton:

Yeah, we literally this morning were talking about having a stomach ache and just being able to keep going because we're just used to being in pain, which is actually sometimes a superpower of being like, "Oh, everything hurts today, but that's a regular Tuesday so I can go interview the most famous person I've ever interviewed."

Jameela Jamil:

So what do you two do about how are you guys working on the shame element that you shouldn't be feeling? How do you work on getting rid of that?

Erin Hawley:

For Easterseals, we've done a lot of content about disability pride and just feeling not ashamed of who you are. We have writers that we hired to talk about it. We've done this podcast, which I think is really changing the way people think about disability. So I'm just like... I'm so excited that I get to do what I love as a job.

Jameela Jamil:

It's so great. And you're making your own rules.

Erin Hawley:

Yeah, totally.

Lily Newton:

Definitely. We just pitched this podcast idea for the sake of being able to be in community with other people with disabilities. For me, that's how I have combated the shame, is that I knew that I was not neurotypical long before I had heard the word neurotypical, but I didn't figure out I was autistic until my early twenties. And there was a lot of shame in that, in both shame in who I am and accepting how my brain works and also shame in if I could make it 20 something years without a diagnosis, do I even deserve to take up space in the disability community? And genuinely it has been meeting other really cool disabled people and creating a community of disabled people who are doing exactly what we're talking about, having a bad day, feeling like crap, and still going on to be an advocate and going on to write amazing things and star in films and write films, and do all these things that I've been able to learn more about myself through my disabled peers than I ever would've been able to alone.

I have noticed that my own view of myself has changed so much since moving my mindset from being, "I have a mental illness" to, "I am disabled." When I would just say, "I have a mental illness," it felt like this thing that I had that I could conquer if I just worked hard enough. And then I met other incredible disabled people and learned that life is so much better if instead of trying to push myself through something, I just learn my own needs and I accommodate myself.

Jameela Jamil:

Representation is also everything. Look at the way that Will & Grace moved the needle for how even middle America, which are more conservative, viewed gay people. We look at the way that mental illness has become further stigmatized because of Hollywood's representation of mentally ill people often being paranoid schizophrenics who murder other people, who have the split Jekyll-Hyde personality. We've seen both the damage and the fact that people with severe disabilities are made the sad story arc in a non-disabled person's life and they're portrayed as tragedy and burden and a great sorrow. And you feel like, "Oh wow, the main character is so noble for loving or caring for this person." I just think it's so despicable that that's the only real representation that people with disabilities have.

And then even those parts are taken by fucking non-disabled actors. It's insane. And I remember... I spoke about this a few years ago, this isn't like, "Oh, I'm so noble," this is just me knowing that when I was a kid and I was very sick and I was bedbound, I didn't want to see someone who didn't live that experience play that part. I'm aware we have to be able to suspend belief, and I think there's a line, but I also think if there's only four or five roles written a year at best, at best four or five notable roles written for people with disabilities, let's include some of the community. But I remember being offered a part a few years ago where it was a horror movie and I had had all my limbs cut off by a sort of serial killer, and I was like, "Why go through all the bother of green screening me and me not knowing me having to spend months learning how I would naturally move if I didn't have certain limbs and just hire someone who doesn't have those limbs."

Lily Newton:

Literally.

Jameela Jamil:

What's the issue? What's it like? It's cheaper, it's faster, it's better, you're going to have a much more authentic experience.

Lily Newton:

And it's the one role that that person can play. Why would we take it away?

Jameela Jamil:

Yeah, and you don't see the character before, so it doesn't make sense because that might make more sense the way you see them in both with and without limbs. But this is fucking ridiculous. And also if you can do the green screen and everything, you can also give someone prosthetics if they're able to use them, and then they can put some jeans on and then they can play both sides of the character. It's really not that big a deal, but it is on us to make sure that we don't take up that space. Even if I have an invisible disability, it doesn't give me carte blanche to then take up all roles of a disabled person.

I used to not be able to hear when I was younger. I would go in and out of, depending on how many operations I was having, of being able to hear, and I was offered the role of a deaf person a few years ago, and again, had to be like, "No, I used to not be able to hear, but now it would be more effective for you to have a deaf person." And again, this isn't me virtue signaling, it's just me calling for the fact that it's not the end of the world to pass on those roles and go do the plethora of other things that are there for you.

Lily Newton:

I think it's so interesting that in saying that there is that need to say, "And I'm not virtue signaling." There's something about disability, and if you talk about it in a way, it feels like, "They couldn't authentically believe this, they must just be trying to sound like they care." And it's like, no, people actually care about disability and representation.

Jameela Jamil:

I know.

Lily Newton:

It's not...

Jameela Jamil:

I know, but there is a lot of backslapping allyship cookie stuff, you know what I mean?

Lily Newton:

That's very true.

Jameela Jamil:

So it's important to just make sure that I'm being clear. And this comes from my own experience. I didn't want to watch a white person play an Indian person. There's certain things that are just true to the experience and let's not dilute the pool completely to everyone when so few roles.

And we need also better roles. We need more interesting roles. We need normal roles with mundane, average life stories. And we also need different roles. We need better roles. We need someone with a typical life story who's just in a relationship and the arc of their story is their relationship issue. Do you know what I mean? Not the fact that they're dying of a rare disease that's going to break the real protagonist's heart. It's so obscene. All my disabled friends, they don't have these big dramatic lives. They have these interesting nuanced lives and romances and marriage and kids and the struggle that comes with all of that. There's so many great stories to tell. The character is so different. The perspective you have in life if you've grown up in some sort of pain or suffering or just having to look at the world and operate through it in a different way. Those are fascinating stories. Everyone looks at people with disabilities and they say, "Oh, you're so inspiring." It's like, well then put these amazing stories and these amazing people on camera.

Lily Newton:

And also put them on camera when they're not inspiring. I want to see disabled villains. I want to see boring disabled people. I want to see everything-

Jameela Jamil:

One issue is that we do have a lot of people who.... We do have a lot of disabled villains. One of the only times that we see villains are when they have some sort of disability or some sort of deformity, some sort-

Lily Newton:

Oh yeah, the coating of scars mean you're evil or if you... We actually are-

Jameela Jamil:

Yeah. Or missing an arm and that's why they're so bitter now and they're killing everyone. It's just fucking nonsense.

Lily Newton:

It goes all the way back to Captain Hook and it's like these-

Jameela Jamil:

Yeah.

Lily Newton:

We actually have an initiative of Easterseals, it's called ES Gaming, and it's about creating a welcoming gaming space for disabled gamers. And we have been talking about that that disability isn't scary actually, but ableism is. And yeah, so that's... When I say disabled villains, I mean where their stories aren't based around disability.

Jameela Jamil:

Yeah, you mean like villain…[inaudible].

Lily Newton:

Yeah, literally. And we are seeing some changes, which is great. I am so grateful you presented at the Easterseals Disability Film Challenge Awards this year, which I think the film challenge, which comes out of our Southern California affiliate, is doing so much for creating that representation both on screen and off-screen. What was that like for you being a part of that experience?

Jameela Jamil:

It was one of the most beautiful things I've ever been to. And the atmosphere in the room was of so much fun. There was so much purity in the room because it was about art. It was really about art. It wasn't just about money or attention or fame like a lot of award ceremonies you get to go to where the valleys have just become a bit emptier because people take certain things for granted. There was a real energy in the room where you were like something... Incredible stories are coming out of here and everyone's so excited to work together, and it didn't feel like a fiercely competitive space. It felt like everyone was really rooting for each other. The work was great and the people were amazing, and the atmosphere was just really hopeful. And I kept on thinking while I was there how much that would've meant to me when I was younger, and how glad I am that it's around now.

Lily Newton:

Oh, absolutely. When you were growing up dealing with so much pain and being in and out of surgeries, things like that, did you know anyone else who was going through similar things as you?

Jameela Jamil:

No. No. My school didn't have any... What would I call it? I didn't have any elevators or anything like that. It was up five flights of stairs. So I either couldn't go to school or I would have to get up there on crutches. That's really intense on a small winding Victorian staircase. And I would always just be late by about 10, 15 minutes, which is a huge disadvantage, to every single class. And then get chastised by the teacher for being late, and just had to constantly miss school, make up for it. Had the constant stress of always being so far behind my class, having to catch up to make my grade, to keep my scholarship. So it was a really intense time. But I didn't know anyone.

And I think people have this feeling when they are around people with a visible disability, which I had at the time of, "Oh, I don't want to catch it." They think it's contagious and they feel sad and anxious looking at you, so they just don't want to see you, so they hide you so you don't get invited to parties and you don't get... People make a choice for you as to what you can and can't do. And that's really fucking annoying. And that's something that we all have to speak about more, which is that you don't know...

I've had people with disabilities on my podcast talking about the fact that they like to be thrown around during sex. And that's something that people wouldn't know that she likes because she's in a wheelchair, but she's fine to do it. I think people like Lolo Spencer as well is an amazing person who uses her-

Lily Newton:

We love her.

Jameela Jamil:

She uses her platform to be able to show that people with disabilities in wheelchairs go out, get hammered, have fun, have sexy times and live like raucous naughty lives. And that's so important. I think she's such an important voice on the internet, so we just need more of that.

Erin Hawley:

Yeah, people don't see us as full people, they just see disability. And to them disability is sad and that's it. And so people are always surprised when I say, "Yeah, I have a romantic partner. I went to college, I have a job." They're just like, "Oh my gosh, you're amazing."

Jameela Jamil:

"You're so inspiring."

Erin Hawley:

Yeah. Listen, what else am I going to do? Just sit and not do anything? I don't know.

Jameela Jamil:

I know.

Lily Newton:

I think there's something about the hiding away. I was interested, Jameela, you've posted some things in the past couple of weeks about your time in Europe and seeing the way that beauty standards were different and how in the US we tend to hide away people as they age. I think there's a very similar thing going on with disability where you don't see the representation and there is a push to hide people away. And whether that's people whose behavior is different or who look physically different, I think that there's some tie in there of how we just shouldn't hide anyone away and we should stop putting moral standards on the way people look.

Jameela Jamil:

It's all funded by capitalism. And capitalism has this fear of stepping outside the boundary of a uniformed look. Because they need to set a standard to make sure everyone's striving towards that standard and buying the same products to be able to look the same. And if anyone doesn't really fall within that, and that means that over the age of 30 or they have a disability or they have a scar or they have imperfect skin. I think we've had some progress of people with vitiligo or people in wheelchairs entering the mainstream advertising space. I think that's great, but I think we could keep going. I think we also have amazing Paralympians, for example, who do loads of great modeling jobs, et cetera. But I think we can just keep pushing it because...

I remember challenging this huge magazine director, editor rather, about why everyone looks the same in her magazine. And she was like, "We're selling a fantasy." And it's like, "Who the fuck are you to decide what a fantasy is? You don't know what someone's fantasy is." Anyone can be anyone else's fantasy, and it's actually not great to set this standard that then makes people who feel attracted to someone who doesn't look like the quote-unquote, "Norm," being that thin, non-disabled, often lighter skinned and with a certain type of aesthetic and symmetry. If they find someone outside of that attractive, they second guess themselves and feel a sort of shame like, "Is this a fetish?" It's like, "No, it's not a fetish. You just like who you like, you're just attracted to someone's pheromones and attracted to someone's face and body and it's not what you see in the magazines and that's great. There's nothing fucking wrong with you."

But we create this explicit shame in people when we set these standards. And for a long time we left out people of different race and people of different genders. And the one area that in all my fucking interviews I've done, I talk about this one area where we even have fat acceptance now. We still don't really have mainstream disabled acceptance. We still just don't really have that visibility. And by the way, when I say that in magazines, they cut it out because they know that I'm calling them out. And so it's really hard to even have the conversation outside of my own Instagram or being able to come on podcasts like yours because everyone gets someone comfortable.

Lily Newton:

It really is that discomfort that it's so hard to combat against. What are you supposed to do if you're going in these mainstream places and then they're editing your words? That sounds incredibly frustrating.

Jameela Jamil:

It's why I started my own podcast so that I don't need them.

Lily Newton:

Yep. That's exactly how we felt.

Jameela Jamil:

No, exactly. And I'm aware that I'm so lucky to have the platform that I do to be able to have such a big opportunity with the podcast, but it's just infuriating. And I think it can change, and I think it's going to change. And I think elevating voices like yours or Imani Barbarin is amazing.

Lily Newton:

I love Imani.

Jameela Jamil:

All these great advocates who are public. I think that's so, so important and so good for us. But it is incredibly weird how silenced this conversation is. Even after a pandemic where we learned that everyone could work from home, entire industries and different types of jobs outside of I think medicine, although even telehealth medicine boomed, we learned that all these times that we told people, "If you can't work in the office, you can't work here." That all turned out to be bullshit. Also, loads of people ended up with Long COVID, which is a type of a disability, severe Long COVID, or people became physically debilitated for various different reasons during the pandemic. And even then we still can't see that disability can happen to you or to someone you love at any point. It is ridiculous and shortsighted, which I hope doesn't come across as an ableist term, but it's not helpful to anyone to shun this very normal, very common thing. Tens of millions of people in the United States is not an accident.

Lily Newton:

Absolutely.

Jameela Jamil:

It's just a part of life.

Lily Newton:

We say the statistic that's often used is one in four people, but that's not even considering glasses or people who have knee pain or... This is a natural part of life and we just hide-

Jameela Jamil:

Yeah, and as you get older, it happens to everyone.

Lily Newton:

Yeah. Old age will happen and there will be disabilities that come with it. And I think you mentioning the thing about that we could work from home and bringing up capitalism. I think that this is a part of why there is a push to keep disabled people hidden away. I've seen people like Imani Barbarin talking about how a disabled identity is an inherently political identity because it means believing that we should accommodate one another and that we should care for one another. And that if people can work from home saying, you need to come in office isn't acceptable anymore, we need to... And there's such a capitalism runs on independence and buy all these products, so you can do it by yourself and you don't need anyone else.

Jameela Jamil:

Individualism.

Lily Newton:

Yes, absolutely. And that doesn't exist in the disabled communities I've been in. It's all about interdependence and community and how we help one another with what we can and can't do. And I think that that would be fearful for some people at the top who want us all to stay as individual as possible.

Jameela Jamil:

They just don't recognize that given that the millions and millions of people who do exist with a disability, they have their own money. It might not be as much money as someone without a disability, but it's called the purple pound in England. I don't know what it's called in the United States as in the spending power of the disabled community. What's it called here?

Lily Newton:

Just the spend-

Jameela Jamil:

Is it purple as well?

Lily Newton:

The spending power, that's all I've ever heard it referred to as.

Jameela Jamil:

Okay, that's fine. So it's referred to as the purple pound for some reason in the United Kingdom. They have a shit ton of money. There's something like back when I was talking about this first in mainstream media, on mainstream news, I think it was like 88 million a year, it's the spending power in the United Kingdom, which is a very small place. That's not insignificant. I was campaigning to get more venues even though they're listed because England's a very old country to be able to have access for people with disabilities. And I kept on being told by the vendors that they don't have enough clientele to justify the reparation costs. And it's like, "If they can't get in fucking the building, how are you going to have the clientele? They're outside waiting to be let in." And people are denying themselves $88 million, like concerts only allow in what 30 people with disabilities? And it's like people with disabilities would fucking love to go to more raves and concerts and all kinds of things like that. It's just so obscene.

It's the same thing with we still make clothes that really go up to a small extra large at best in most stores. And the majority of the western countries in which we do that have people who are a size 16 plus, which is an extra extra large in certain stores or extra extra extra large. Most people are 16 and over. We just shut people out. We deny. It doesn't make any business sense to deny these vast populations, the ability to participate. It literally doesn't make any sense. I've been doing a movement called Move for Your Mind, which is an exercise movement that is disabled accepting, and accepting of you, whatever size you are and whatever age you are, it's where we're not making exercise about how, quote-unquote, "Strong you can look or physically fit or thin you can be." It's just about the neurological benefit of doing literally anything that is within your capacity. Anything that's moving any part of your body that you are well enough to move for just five to 15 minutes a day and how much that can change your mood and your sleep and your cortisol levels.

I didn't realize how much of a gap there was for something like that where we're not taking ourselves seriously, we don't have perfect form. All these adverts that have disabled athletes in it, these are the best athletes on the planet. They're the best looking, most normative beauty standards, and they're fast and they've got not an ounce of fat anywhere, the most insane ripped muscles and they're doing an 80-foot jump or something ridiculous. And that's great and that's really important and amazing, but it's also like these people are super humans, all these athletes in these adverts. I would like to see people with disabilities who aren't also exceptional super humans who can-

Lily Newton:

We see the same thing with... You have to win a Nobel Prize to be acceptable and there's that need to be perfect if you don't fit the gold beauty standard, which is just ridiculous. And I think you make such a brilliant point that accessibility is frankly just a good business decision.

Jameela Jamil:

It's common sense.

Lily Newton:

Absolutely. It's just common sense. And I think that that's important, and I applaud you for always starting new movements and trying to get these conversations going. I think that even what you've done with I Weigh and bringing just conversation around eating disorder to the mainstream has been incredibly important and is another area that doesn't really get talked about as disability but is. So I just applaud all of the work you do and how you always seem to have a new movement. Do you think that comes from dealing with shit as a kid?

Jameela Jamil:

Yeah, I think it's just from not really understanding what was wrong with me and thinking I was the only person experiencing all these things that turned out to be really, really pervasive. And actually hundreds of millions of people around the world were also struggling with this, but none of us were talking to each other because there was no representation. So I'm just always trying to create that representation, not just by myself, but trying to bring in people who can educate me and everyone about their different experiences, is from a selfish place of my wanting to gift my 12-year-old self and the next generation of 12-year-olds with something to look at that reminds them of them.

As you were saying, eating disorders are the highest cause of death in any mental illness. These are really serious subjects and I'm glad to have been a part of really making that a mainstream normalized conversation. Because if we can't see these things, if we can't see the fact that people are afraid of disability, if we can't see that people are afraid of fat people and hate fat people, if we can't talk about these things publicly, then they will continue to exist. All abusive systems thrive on people not talking about it, but once you see it, you can't unsee it. And so all we have to do is really... My belief is that exposing it is a huge part of the journey of destroying it because the enemy can no longer hide in plain sight because we've all chosen to look the other way. And I think that's why I'm so annoying and loud, is just because it really changes our lives to understand ourselves. Look how amazing you feel both being in communities where you feel understood and seen and heard, makes such a difference to your mental health.

Lily Newton:

Absolutely. And just having people who are willing to be annoying and loud, I think it's important and it gives... When someone like yourself who has this platform is willing to talk on these issues, gives the rest of us desire to do things like this and start our small podcast through our nonprofit. It's really incredible. I just a million times thank you for everything you do.

Jameela Jamil:

What are both of your ambitions in this industry?

Erin Hawley:

For me, kind of what you said. I want kids growing up to understand that because you're disabled doesn't put any limitations on your life and what you can experience. Because when I was young, I was the only disabled kid in the entire school. And that was in the eighties, eighties and nineties. I had friends and I had a good time, but I also didn't consider myself disabled because I have a lot of shame attached to that based on what I saw in the media, on TV. And I thought, "That's not me. I'm not unhappy. I'm happy." And so I think to give kids that representation in media is so important and will help them feel proud of who they are.

Jameela Jamil:

Cool. That's really cool.

Lily Newton:

Yeah, you're - I love you, Erin. Yeah, I think that that's... I'm still early in my journey of it all. I was living in Los Angeles pursuing acting and directing when I found out I was autistic and it just rocked my world. I ended up moving back home to Illinois and figuring out what I needed to do. And spent a couple of years genuinely just being selfish and figuring out my own needs. And I'm now venturing back into... I'm working on my first short film that I'm directing right now. So I think my big thing there is just really accommodating myself how I need to and being okay with it. Maybe I do need to live in Chicago because my family's in Illinois and I need that support and it's okay to do that. And we have stuff like this now.

Jameela Jamil:

Because we do everything remotely now.

Lily Newton:

Literally. We're doing this, I'm talking to you from Chicago and I think that that's really exciting. So that's where I'm at right now is just showing how easy accommodating yourself can be. And that's what I want to continue to do, is let people accommodate themselves because I think that especially as women, I'm extraordinarily white passing, but especially for brown and Black women, there's this need to just accept pain and accept discomfort, and I want to be loud about accommodating my own needs.

Jameela Jamil:

One mistake I feel like I made for the first half of my career is having such a bee in my bonnet about not wanting to be seen as sick and not wanting to be discounted from opportunities that I would push myself way too hard to try and prove something. And I never took breaks and I never took holidays and I didn't go to the doctor often enough and I didn't get my scan or my blood tests. I wasn't aware that I was developing the beginning signs of osteoporosis because of my eating disorder because I was starving myself. I didn't know what was happening. I was working harder than people with no health problems, which you do kind of have to do. But I was really just basically killing myself. And one thing that was great for me about the pandemic was that moment of still that made me remember that, "What am I doing? We could all just die tomorrow. Why am I waiting till I'm dead to rest and enjoy my life and see my friends? It's just not worth it."

I'd rather live in a smaller house, which I think I'm going to move to. I think I'd rather have a cheaper lifestyle and work less and not be in constant pain. I'm glad that I did She Hulk. It was insane to do stunts with Ehlers-Danlos syndrome. They were terrified of me as to when I was next, something was next going to fall out of its socket. But we made it through with a lot of KT Tape and a lot of casts and a lot of, whatever you call it, sorry, what's it called? The support straps that have metal in them to stop my ankles from falling off my feet or falling off my legs. But we did it and I'm really glad I did it, but I wouldn't do that for a year straight. I wouldn't now only go into action movies. I'm going to look after myself.

While I want to be an example of the fact that you can achieve your dreams, it's also okay to somewhat modify your dreams. Don't cut yourself off from every opportunity, but also go like my whole life can't just be about being in discomfort to prove something, I also need to have pleasure. And so it's about being able to live somewhere between the politics of representation but also the pleasure aspect of life and not putting yourself in a position of so much pain and discomfort that actually you don't really have a great quality of life. We still deserve a good quality of life, and it's okay to say that I have some limitations. It's okay to navigate the pride that comes with being told you can't because of something that you are born with or that you develop, something that happened to you or whatever, or that you exist with.

It's fucking infuriating. It's really hard not to want to prove everyone wrong, but also you have to find the happy balance so that you don't make yourself sicker or ruin your quality of life, which I think is an important thing to say because a lot of people try to be so inspiring that they endanger other people who are sick. And I think that I ran the risk of doing that when I was younger and the way I used to speak about how proud I was to not be held back by... It's like I am held back by it. It's then ice packs and hospital visits and hospitals stays and adrenal failure and all these kinds of different things that happened to me because I took it too far, and I think it's responsible for me to use my platform to say like fucking play the long game.

Lily Newton:

Yeah. I think that I would hypothesize that that's going to be a game-changing thing for some of our listeners to hear, because there is so much pressure when you feel like you have to prove someone wrong who is... Especially when you've been underestimated, that is just... I know I needed to hear that. And I think that there's, I'm sure, a lot of our listeners who needed to hear that as well, that you have to find that middle ground and that your quality of life is worth it more than hurting yourself.

Jameela Jamil:

Yeah. I also have quite an interesting insight, which is that I've now met, not to go full Tahani from The Good Place, but I've now met a lot of the most famous people in the world who have everything and they don't have health issues, or not yet, and they're not very happy. And so no one talks really about that. And so I think that people are like, "I'm going to push and push and push and push and push" whether they're sick or not or whether they have disability or not. And they don't know that it's just a bunch of money and shit at the top. It's not worth it. So I think also seeing that, I was like, "I'm doing all this to then feel really lonely in a castle somewhere far away from my friends. No, thank you."

Lily Newton:

Yes, I'm so happy you're saying all of this. It's very validating. I was signed with a great agency right out of college and had to give that up to move back home, and it felt like I was giving up the potential for dreams, but I have dinner every Wednesday night with my best friend now, and that is what is no fame is going to mean as much to me as that.

Jameela Jamil:

In a much less politically interesting way, I think I did that with also no longer starving myself where I was like, "I don't have the energy for sex. My hormones are dying. I don't have any estrogen left in my body." I have no [inaudible 00:49:54] because all I've done all day is think about the calories in and calories out. I was sacrificing my pleasure and my joy and the fun of eating a pizza with your best friends in front of the television, all of that for this beauty standard in the industry. I was like, "If the beauty industry or fashion industry, the sample sizes are too small for me and you have to pay extra money to have them made bigger..." So this is like fat tax put on things, which if I'm having to pay for it, means people who are bigger than me have to pay even more money for that to be done, or won't even be loaned to the dress in the first place.

And the reason that's important is because our careers depend on our ability to wear fashion clothes in the fashion magazines and then get press. And if we can get pressed, then we're more likely to get another job. And so I was just like, "Then maybe I'm just not going to pay a thousand dollars for something to be made for a human-sized adult. For it to go from baby gap to my actual size." I was like, "I'd rather just not go." So I just don't go to a lot of events very often because I'm like, "I'm not paying that money and I'm not going to be anxious for the next three weeks about a red carpet, about a piece of red material that's 20 feet long. I'm not going to not have sex and have fun with my friends and enjoy my life and enjoy mental health when I'm lucky enough to have it back. I'm not going to sacrifice my kidneys and my liver again."

I can't believe what we do. We thin our hearts when we starve ourselves. I've been thinning my heart for 20 years for a fucking red carpet. It doesn't make any sense. So I've just decided that, "Maybe I don't have to break through every grass." Sorry, grass. "Maybe I don't have to break through every glass ceiling. Maybe I can just find a middle ground and have that be okay and enough for me, and then the next person will go and do what I've done and then they'll top it a bit. I don't have to break every record by myself." There should be enough of us in here rather than the scarcity mindset of like, "I've got to be the one to do it." No, let's make space for others. Welcome us all in and together we can collectively break all the barriers in different ways.

Lily Newton:

Yes. And then in making space for others, you make time for your own pleasure, which is very necessary.

Jameela Jamil:

Cake and orgasms.

Lily Newton:

The things we need.

Jameela Jamil:

Can I get an amen?

Lily Newton:

The things we need, especially when you had a childhood filled with pain. Let me have an adulthood filled with cake and orgasms.

Jameela Jamil:

Yeah.

Lily Newton:

Oh, this has been such an incredible conversation. Before we let you go, we have our final question we always ask, which is our podcast is called Everything You Know About Disability is Wrong. What do people get wrong about you?

Jameela Jamil:

Oh, what do people get wrong about me? Oh God, I don't know. I don't really care what people think about me. Yeah, I think it's just none of my business, but I think some people think I talk about disability for attention, and it couldn't be further from the truth because they think that I'm doing it as some sort of a grift to make money. You don't make more money when you tell people that you're not very well because then your insurance costs more when you get hired. So coming out and speaking about it publicly was something I did that guaranteed I would get less money and less opportunities, but I did it because then there can be more of us. If I get to raise awareness, then there can be more of us who go, "Oh, I've got this condition and I'm in and out of a wheelchair sometimes and I'm in pain all the time, but she did that, so maybe I could do something like that as well." It's worth it.

Lily Newton:

I love that and I love that We obviously know that and also just need to be reminded of that. It's not really my business what people get wrong about me. That's really good.

Jameela Jamil:

No, I hate loads of people loads. I'd say the majority of people, and it doesn't bother them, and they don't know about it, and it doesn't make their lives worth, it doesn't actually affect them. So why should I mind if anyone hates me? I find everyone annoying. It's okay if other people find me annoying. It doesn't bother me. It doesn't have to ruin my life. That's your personal taste, and it's not my fucking problem. And vice versa.

Lily Newton:

As an autistic person who often info dumps way too much and then looks up and realizes that people are not wanting to hear what I have to say, I needed that, and I love that. That's really, really good that I can remember that. I don't like that many people either, so why would I care if they like me?

Jameela Jamil:

Yeah, it's just not a big deal.

Erin Hawley:

I had to come to that realization as an adult because if I cared what people thought about me, I'd be in bed crying all day, and my mom was just like, "Erin, don't give a shit about what they think." And I was like, "Yeah, yeah, okay." That mindset just changed my life entirely.

Jameela Jamil:

Other people's opinions can become a prison, and I think it's really amazing that you have parents that liberated you from that.

Erin Hawley:

Absolutely.

Lily Newton:

Erin, you have liberated me from that in this last year of us making content together. I think that that's been one of my favorite parts of our friendship is you just reminding me to screw what other people think. That's important. Jameela, thank you so, so much for coming on this podcast. I know you have lots going on in your life and lots of things, and the fact that you would take time to come onto our little podcast and honestly open it up to a wider audience is just... I'm just really, really grateful.

Jameela Jamil:

Thank you both for inviting me and for having this wonderful open conversation and good luck with this podcast, and I'm sure this is just the beginning of many brilliant things you're both going to do, you're both very special.

Lily Newton:

Thank you so much.

Erin Hawley:

Thank you so much.

Jameela Jamil:

Bye-bye.

Erin Hawley:

So thanks for listening, everybody. We had such a great time. I love Jameela. I've been following her on Instagram and I totally recommend it because she has some great thoughts, important thoughts. Definitely check it out.

Lily Newton:

Definitely.

Erin Hawley:

I see you next time in the next episode.

Lily Newton:

Bye.

Erin Hawley:

If you like what you heard, go ahead and subscribe and leave us a review wherever you get your podcasts.

Lily Newton:

Thank you to our listeners, and as always, thank you to Easterseals for giving us the space and resources to share such authentic conversations from within the disability community to our listeners.

Erin Hawley:

And I'll see you next time for another episode of Everything You Know About Disability is Wrong.