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Jameela Jamil: Advocate First, Actress Second

Jameela JamilJameela Jamil, known in the UK as a TV and radio presenter, gained popularity in the US for her role as Tahani Al-Jamil in NBC’s The Good Place. In disability circles, she is recognized as an advocate for disability rights, LGBTQ rights, body neutrality, and her work around social justice. Jamil lives with several chronic illnesses, including Ehlers-Danlos syndrome (EDS), an invisible disability. She also identifies as queer. Jamil spoke with ABILITY Magazine’s Karina Sturm about her passion for advocacy work, as seen in her new podcast iWEIGH. With candid moments of her life, Jamil shares her journey to champion understanding, self-worth and unity.

“I am an advocate first, and everything else last.” – Jameela Jamil

Karina Sturm: Good morning, Jameela. I have been following your work for a while now and am very thankful to have you here today. And by the way, happy birthday! I saw your birthday was a couple of weeks ago.

Jameela Jamil: Oh, thank you!

Sturm: First, I wanted to talk a bit about your background. You grew up in the UK, but now you live in the US. Tell me a bit about how you ended up here?

Jamil: I was twenty-eight, and I had just sort of done everything I could ever have wanted or hoped to do in the United Kingdom. And I knew I wanted to do more and to explore more, but I was afraid because, as a woman, you’re told just to eat what you’re given and that if you achieve anything, you’re very lucky. And it must have been some sort of a fluke. So, you shouldn’t rock the boat and try and start again. At 28, I was considered too old to start again. It’s as if you’ve made your bed, and now you have to lie on it. I just thought there might be something new out there for me. And I’m never one to do what I’m told. So, I decided to book a one-way ticket after a health scare where the doctor found a lump in my breast I had to have removed. I booked my ticket exactly six weeks from the date of the operation, which is when it’s safe to fly. I had no agent, no contacts, no visa. I had no plan. I just wanted to prove everyone wrong.

Sturm: That’s really cool. You’ve done so many different things throughout your career. If I am not mistaken, you started out as a TV and radio host, and then you switched to acting, even though you were planning to be a screenwriter.

Jamil: Yeah, I was a DJ, too.

Sturm: In what role do you see yourself the most today: Actress, activist or more as a presenter?

Jamil: I think I’d use the word advocate more than activist just because of the way that activists often lay their actual lives on the line in activism. I want to be careful not to take up that space. But I would say that I am an advocate first and everything else last. I moonlight as a performer, but my biggest cause in life since I was 19 has been social justice.

Sturm: I could clearly see that on your social media profiles. So, let’s talk about your advocacy. I don’t know if you know, but I have Ehlers-Danlos syndrome myself.

Jamil: Oh, no way.

Sturm: Yeah, and a lot of other conditions.

Jamil: EDS is a real bitch, isn’t it, when the weather is bad?

Sturm: It is. And if you are on your period, which for some reason, I always am when I have important interviews. (Giggles).

Jamil: Your period is worse because of Ehlers-Danlos syndrome? Is that why my periods are so bad?

Sturm: It’s usually the other way around for me. If I have my period, I’m just in more pain, and my joints are more unstable.

Jamil: Oh my God, that makes so much sense. I can’t get out of bed for a couple of days before my period.

Sturm: Same here.

Jamil: I didn’t know that was linked to Ehlers-Danlos. How cool. I learn something new every day.

“I felt a sense of duty to use my platform to speak out about this and start raising awareness [for Ehlers-Danlos syndrome].”

Sturm: It meant a great deal to me that you decided to speak out about your health challenges publicly. Would you like to tell me why you decided to share your health journey with your followers?

Jamil: I’d wanted to speak about it my whole career, but I was always told not to because it would be harder to employ me if people knew that I had an invisible disability. As my career grew, I just finally felt like I was powerful enough to do it. I had always planned to say it when I felt safe in my career because, unfortunately, that’s how it goes. I knew it would mean a lot to the young people that followed me, and I also heard that the research funds are dwindling. There is less and less awareness, and the toolkits are being removed for doctors to be able to use to identify Ehlers-Danlos syndrome. All of these pieces of information from around the world and seeing how little awareness there still is now– I was diagnosed in 1995–I felt a sense of duty to use my platform to speak out about this and start raising awareness. Maybe we can start raising money for research. A lot more people have this than they even know because doctors don’t know what to look for. Often, they think we are hypochondriacs or that we have Munchausen syndrome because we present as very healthy on the outside. You look like the picture of health, for example. so, no one would believe that we are physically fragile or vulnerable.

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Sturm: I know some people attacked you for ‘faking’ your illnesses. That’s something I and many people I know are very familiar with. We get dismissed and belittled every day. Can you tell me how you, as someone who stands in the public, deals with those ableist comments? Publicly, but also internally, as these must be really painful.

Jamil: It’s really hard whenever it happens because someone’s trying to convince you that you are imagining this pain, but it’s very real. I have very real swelling. I go to bed every single night completely swollen, and I wake up in the morning swollen and in pain. And I have to go out of my way every single day in order to do even half the things that my peers are able to do naturally. I have to live my life constantly taking precautions. People might ask why I never drank. It’s why I never smoked or did hard drugs because I can’t risk falling over. I can’t risk something going wrong the way a person who doesn’t have EDS can. Ehlers-Danlos syndrome is always at the forefront of your mind because it affects every single cell in your body, and so every micro decision you make is in consideration of Ehlers-Danlos syndrome. For someone to discard that just because you look “OK,” according to their own Bible of ableism, it’s very hurtful. I was very lucky that I was diagnosed by one of the leading consultants in the world, Professor Rodney Graham, when I was nine years old, and he looked after me for 20 years. So, I was lucky that I always had him to write an angry letter to my school or to my work to explain my limitations or to fight discrimination for me. I can’t imagine what it’s like for people who only get diagnosed later in life. But since I had that, I felt quite protected, and I felt quite believed because if an expert believed me, I didn’t need anyone else.

However, when it happened on a global scale last year because some female journalist, who literally only goes after women, raised that issue and then social media took hold of it and ran with it, that was overwhelming for me because the world was laughing about something that has made me struggle my entire life. Also, who’s ever gotten a job from saying they’re sick? Who’s ever gotten a beauty campaign from saying they’re sick? Who’s ever gained popularity from that? We live in an ableist world that considers sickness and sexiness to be mutually exclusive. What benefit would there be for me to lie and make this thing up that would only make my life harder?

Sturm: Exactly.

Jamil: So that was painful. However, mostly I was sad for the people, especially for the kids out there who were reading that and felt like this would further the doubt and stigma for them, for their lives. I think that’s what people don’t realize: When you’re mocking me and my mental health and my physical health, I’m probably not going to see it. But who is going to see it? Other people that follow me. And those people might be sick, or they might have sick children, And they’re going to be harmed. They might be a sick person who thinks that they won’t be believed now because they’ve seen what your real attitude is towards someone with an invisible disability. I’m sad at how it went down, but it raised awareness on the issue, and that’s OK by me. I’m fine now. So maybe it was for the best. I still think that everyone who contributed to that is a trash human.

Sturm: Did you have any specific coping mechanism to deal with this?

Jamil: I take very strong anti-anxiety medication. (Chuckles).

Sturm: Well, that’s something. (Chuckles).

Jamil: I think it’s very important not to pretend that you are just a stoic, strong, perfect person. I had to go on very strong anti-anxiety meds to cope with the global shaming and ridicule. But I’m fine now.

Sturm: I’m glad you are, but it still sucks you even had to face those allegations.

Jamil: Unfortunately, these conversations almost always have to happen in the worst and most clumsy and violent way in order for the most people to hear about it. Outrage sells. And I guess that’s how that story was able to make it onto global front-page news. But now we at least have a dialog about the fact that you can’t tell if someone’s sick, just by looking at them; just in the same way that you can’t tell someone’s health just by looking at their weight. If someone is living in a fat body, that doesn’t mean that they aren’t healthy, or they aren’t fit or they aren’t going to live a long life. We need to stop diagnosing people with our eyes.

“Unfortunately, these conversations almost always have to happen in the worst and most clumsy and violent way in order for the most people to hear about it.”

Sturm: Yeah, that’s a very good point. How do you think growing up having this perspective on disability and illness has influenced you as an adult and professional later in life?

Jamil: It’s made it harder for me, but it’s also made me much more grateful for everything that I do have. I think I have my feet on the ground more than most of my peers because I’m so grateful to do the things that they often take for granted. It has gotten in my way many times, but that’s alright, and I don’t have a resentful relationship with my body like I did when I was a teenager. I used to look at my body as though it was working against me, whereas now I realize that I was just born with a genetic condition, and it’s doing its best. Now I look at my body as my best friend; my ride or die. I do everything I can to try and look after it.

Sturm: What do you feel is the biggest challenge being a chronically ill woman and an outspoken advocate who belongs to different minorities in Hollywood, especially compared to your non-disabled colleagues?

Jamil: I don’t really know because I’ve only just said something, so no one else knew until now. For me personally, it’s very easy to resent other people who don’t struggle the way that you do. It just means everything’s harder. That’s the truth. I have to work harder. I have to plan more. I have to be more careful. I hurt more. But at the end of the day, I’m so lucky to have been able to break into this industry with this condition, with all these setbacks, with these health problems. And I always worry that when young people with Ehlers-Danlos syndrome see me out there looking fine or wearing a pair of high heels, they think I’m just gliding through and that there’s something wrong with them. I want you to know that I’m struggling. I’m wearing those heels for fifteen minutes, and then I’m going home, and I’m lying down in between every take so that my fluid can move from my ankles up towards my leg. It’s not easy for me either. I’m just doing it because even though it’s really hard, I have a point to prove.

We don’t have much representation of disability in this industry as it is, even though mine’s invisible. The world makes so many judgments on us, and doctors tell us what we can’t do. And sometimes they tell us we have more limitations than we have. I would like to take back whatever autonomy I can and prove to young people out there that maybe you can have your dream, maybe people can know that you’re sick. If I end up on the cover of magazines and people can show my stretch marks and my scars and my bendy joints, I want young people to feel that at least some of their dreams can come true, too. I want them to feel represented in me. Once people know that you’re sick, they just write you off, and they just hope you survive rather than expect you to thrive.

Sturm: And they don’t think you can be successful if you’re chronically ill.

Jamil: I don’t want to look at Ehlers-Danlos syndrome as a death sentence or as a prescription of how much joy I’m allowed to have. So, I take a lot of risks with my body, but I am also looked after well by doctors, and I’m just doing my best to show that we have as much right to joy and adventure as anyone else.

Sturm: And we can be happy. I think that’s a very important message.

Jamil: We can be happy. We can be in love. We can have sex safely and carefully–

Sturm: If we don’t dislocate our joints. (Laughs).

Jamil: And we can have a wonderful social life and understanding friends to help look after us. The biggest thing for all of us is learning how to accept that there are some things we can’t do, and that’s OK. I’ll never ski, for example. I’ll be in the après-ski, having a hot chocolate, waiting for my friends.

Sturm: Sounds much more comfortable anyway.

Jamil: When you have a disability, and then you see people who are non-disabled do these things with their bodies, like that guy who climbs that cliff without a rope, I get angry. I get mad when I see people taking risks with their bodies like that. I don’t understand what anyone’s doing. Why are we ice skating? Are you kidding me with ice skating? (Laughs). Are you kidding me with being on wet ice on a knife – like, gliding on a knife through wet ice? What the f*** is going on? So, I am very grateful to Ehlers-Danlos syndrome for keeping me away from these stupid activities that I would definitely participate in otherwise.

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Sturm: Oh yes, even hiking is risky for me because I fall all the time. I can’t really imagine doing anything else. (Laughs).

Jamil: I live a super safe, comfy life, and I have stopped longing for anything other than that, especially now since I’m getting old. Eventually, this shit catches up with everyone.

Sturm: Hey, come one, you’re my age. (almost 35).

Jamil: Yeah, but I’m getting old, and I don’t think old is bad. Everyone my age, whether they have a disability or not, is wanting to be a bit more careful with themselves. So, we’re all kind of leveling out anyway.

Sturm: That’s true. Now, you aren’t only raising awareness for EDS, but your work also focuses on body positivity, trans rights and so much more. How did you get into those fields?

Jameela Jamil, a woman with long black hair and a white blazer, sits in a chair on a stage next to a man which a black suit.
Jameela speaking at an event for gender equity.

“I just felt left out in so many different ways and felt like this world wasn’t built for me.”

Jamil: No, not body positivity. Body positivity is a different social-political movement that is hugely important, but not mine. I advocate for body neutrality, which has more to do with eating disorders. I’m definitely someone who supports body positivity, but it’s not really something that I’m actively engaged in the way I am with eating disorder awareness and body neutrality, trans rights, LGBTQ rights, racial justice, feminism and disability rights.

I grew up very marginalized and very lonely and feeling a lot of shame around the state of my life as a result of our society ostracizing anyone who was different. And I was sick and brown and secretly queer, and a girl and taller than I was supposed to be for a girl and chubbier than I was supposed to be for a girl. I didn’t have cute little white Eurocentric features. So, I just felt left out in so many different ways and felt like this world wasn’t built for me. And now to suddenly find myself accepted by the world –This is the same face. I didn’t have any surgery. It’s the same face that was rejected for the first 20 years of my life–And suddenly being on the cover of a magazine means that I have this platform where people are listening to me, where people will hand me a microphone to speak. I just want to use it to raise awareness about all the things that 12-year-old me cared about. I feel as though if I work in this industry that contributed so much to her erasure and her low self-esteem, and I don’t use every opportunity I have to try and fix what was broken when I was little, then I will let down my 12-year-old self.

Sturm: So, that’s why you started your iWEIGH movement? And now you also have a podcast with the same name. Can you tell me a little about those projects and what you want to achieve with them?

Jamil: iWEIGH started as a rant online where I was sick of the way that women are still–20 years since I first developed an eating disorder–valued by the number on a scale. I couldn’t think of photographs of men with their weight written across their bodies unless they were UFC fighters, and yet I could see countless pictures of female celebrities with their weight written on their bodies. These women have amassed billions of dollars or won countless awards or broken world records, and the only thing we care about is how little space they take up in the world.

I was very offended by that. So, I spoke out about it, and it must have touched a nerve because 10,000 people, mostly women, wrote back to me that same day as a response to a post I wrote about what I weigh, which is I weigh my relationship, my financial independence, my friendships, my contributions to society, my failures, my triumphs. Within three days, I started an Instagram account. I thought it would be a phase. Now, I’m here three years later, and we’ve turned from being an eating disorder awareness company to being a social justice and allyship company. I think a lot of people realize they’re not really doing enough to help other people who don’t look like them, and they don’t really know where to start. Rather than punishing those people for being a product of their environment, it would be more of a solution-based approach to give them somewhere to start.

What I’ve tried to create with iWEIGH is a safe space on the internet where you won’t be judged for what you don’t know, which is going to make you feel excited to learn. And there’s a lot that I don’t know. I learn publicly from great educators on the podcast and the YouTube channel. I’m super proud of the YouTube channel. I think it’s so radical and special. And I make it with a great team of people. I’m happy for us to be that starting point wherever you are because you feel less lonely when you’re connected to people from all different walks of life, because really we’re all just the same.

Sturm: What kind of topics do you discuss on your podcast?

Jamil: Everything, truly, everything. Immigration, disability, mental health, shame, eating disorders, body image in general, race. We’re trying to cover absolutely everything there is. We’re currently looking to speak to both people with autism and people who are experts on autism, so that we have both sides of that story, rather than just having a non-disabled expert speak for autistic people. We want to try and do both in the same episode, but also not put someone with autism under a magnifying glass for an hour to have to speak for everyone, as if people with autism are a monolith. We’re trying to slowly but surely get to every different type of group, every different type of religion, and just bring the world closer together because I feel as though that’s the exact opposite of what our governments want. The rise of fascism depends on our division. And the only way to combat that is with unity. That’s what I’m trying to do. People are learning a lot from the podcast. I am learning a lot. And people are making friends via interacting over the podcast and over the iWEIGH account.

Sturm: That’s really cool.

Jamil: It’s one of a few nice communities online. There is no trolling. If we put a picture up of someone in a bigger body, a disabled body, or with dark skin, we will be monitoring the comments very, very carefully and make sure to protect the person online because that person is not the only one who gets harmed when you see trolling–So is also anyone else who identifies with them, who’s reading the comments too.

“All I plan for the next ten years is to do my best to help my own mental health and to help raise awareness around the mental health of others.”

Sturm: How do you handle belonging to so many intersectional communities and the challenges that arise due to trying to satisfy all of those with your advocacy and work?

Jamil: I think two ways. One, I recognize that I’m only one human being, but the other thing is that I’m really not the star here. I’m not at the forefront. I pay for the company. I fund everything. I come up with the ideas. I’m the creative and the CEO, but it’s not really on me. It’s on the extraordinary educators I bring on. My job is just to make sure that I represent as many as possible. I don’t consider this to be all about me. I share the glory and the burden with as many other people as possible because this can only be done by a community. This scale of work and education can only be achieved by thousands of people. It can’t be achieved by one.

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When people try and make activism all about themselves and take everything on alone, they just burn out, and they end up not really being able to help anyone. I’ve never wanted to do that. I’m very lucky that I have access to all the best educators in the world, and I get them to do the work and learn from them. I’m here as the pupil, not as the teacher or the leader. Well, the pupil and the bank. (Chuckles).

Sturm: I also read that you never ever photoshop any of your professional images. How do those photographers or the magazines react if you tell them you won’t allow them to do that.

Jamil: They used to tell me to f*** off and refused to shoot me when I was younger, or they would force me to do it, and I would have to. Otherwise, I wouldn’t be able to promote whatever show I was promoting. I was very young and new, and I didn’t have any power.

When I turned 30, and I had The Good Place, I said, I’m just not doing this. I’m not going to allow for them to edit my images. I’d rather not be shot. I had nothing to lose because I didn’t plan on having a big career here or being famous. There was a big appetite for me as soon as The Good Place took off, so I knew I had the power to say, ‘No.’ So, I did. I wish I had exercised that power and been firmer when I was younger, but I was scared. Today, I have an excellent team of really empowering women around me who help enforce all of these things for me. They back me up fully. It’s really good not just for the self-esteem of the people who follow me to see my real stretch marks all over my breasts or all over my body or to see my cellulite or my wrinkles as they grow, it’s important for me as well so that I don’t compare myself to digitally enhanced images. That’s the problem with editing: It doesn’t just f*** with other people who are looking at our pictures. It really messes with our minds. We are comparative creatures. We can’t help it. So, I think it’s really important to try not to engage in editing if you can possibly avoid it.

Sturm: I agree. I have two last questions for you. The first one is: Where do you see yourself in ten years from now?

Jamil: I have no idea. I don’t ever plan, so I’m afraid I have no answer for that. With Ehlers-Danlos syndrome or with many chronic illnesses, you can’t really plan. You learn very young not to plan. Honestly, with EDS, I have no idea if I’ll still be able to walk the way that I can now in ten years. I’m just going to keep going and doing my best to protect myself and as many other people as I can. All I plan for the next ten years is to do my best to help my own mental health and to help raise awareness around the mental health of others, to make them feel supported. But I have no finite plan because why would I? How can you?

Sturm: I love that answer. It’s very honest, especially with EDS. I always love to end interviews with a random funny question. If you were given a free 60-second advert slot at the Super Bowl, what would you use it for?

Jamil: I would talk about Ehlers-Danlos syndrome 100 percent. It’s the thing that most needs to be spoken about. No one gives us any time because it’s not considered a dramatic condition. I want to raise awareness about EDS.

I also would like to show disability in a sexy way. That’s something that I feel really passionately about, that I’ve been working towards. I was a guest editor of a Playboy magazine and was able to put a friend of mine in that magazine who is an amputee. She was shot so beautifully, and she looked so incredible. She’s partially nude in some of the photographs, and you can see her prosthetic, and she just looks gorgeous. That’s another thing that’s really important to me: showing disability in a sexy light.

Sturm: Oh, I love that!

Jamil: People see people with disabilities as untouchable. And it’s so not true. Many of my friends with cerebral palsy have wonderful sex lives, they get married, and they may be going to have babies. So, I’ll keep working towards showing disability in a sexy light.

Sturm: Well, I will keep supporting your work in the future. Thank you for all you do! And thank you so much for talking to me. I really appreciate that a lot.

Jamil: No, thank you! Have a great day!

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May is Ehlers-Danlos Awareness Month! Spread the word. Share this article. Educate one more person about EDS.

Karina Ulrike Sturm

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