Transcript of Equal Too Episode 3: Accurate Representation Matters
[MUSIC: ‘Rising Phoenix’ performed by georgetragic]
There’s a young boy
Walking through obstacles
Cut up from all the surgeries
Prosthetic picture perjury
Telling me, I’m normal
But normal, they never really made me seem
They always painted me
Discriminated but levitated …
DAN BROOKE: That seems like such a tremendously obvious thing to do doesn’t it – disability sport presented by people with disabilities. Only no one in the world had ever done anything like that before – it was revolutionary.
RJ MITTE: I was looking at these kids and they were in awe. They were like ‘We’ve never seen this before.’
EDDIE NDOPU: We don’t have a disabled actress who is an Oscar winner, and who’s on the cover of Vogue.
KEELY CAT-WELLS: I quickly found when we have clients who go to jobs that are completely unrelated to disability, they would consistently be asked to speak about their disabled experience.
JAMEELA JAMIL: This industry that I’m in, the entertainment industry, is wonderful in many ways, and can achieve great things, but it’s also responsible for putting so much ***** into the world and so many dangerous narratives – it’s responsible for so much erasure.
[MUSIC: ‘Rising Phoenix’ performed by georgetragic]
I’m a Rising Phoenix, I rise above you
I’m a Rising Phoenix, I rise above you.
On your marks get set…
SOPHIE MORGAN (narration): Throughout the interviews for this series, one issue comes up time and time again: representation. The general consensus appears to be that in all parts of society, disabled people are represented inaccurately, offensively, or worst of all – they’re ignored.
In this episode we’re asking why representation matters and how we can achieve more accurate and greater representation moving forward.
I’m Sophie Morgan, and this is Equal Too. Episode 3: Accurate Representation Matters.
SOPHIE (narration): The team behind this podcast are exceptional, and I use that word deliberately. They are the exception to the rule. Because when they made the Netflix documentary Rising Phoenix about the Paralympic Games, they insisted on using disabled talent, both on and off screen. From day one, disabled people were put at the heart of the filmmaking process.
Paralympians like USA’s Tatyana McFadden, who we heard from in the last episode, was one of Rising Phoenix’s producers – the researchers were disabled as well, even the film’s title track is a collaboration between composer Daniel Pemberton and Krip Hop Nation – a movement of disabled hip hop artists and musicians.
Due to the proactive approach taken, over 16% of the Rising Phoenix working days were fulfilled by people with a disability. And in this podcast’s production, over 60% of the people involved identify as disabled. Both projects were designed by disabled people for disabled people.
[MUSIC: ‘Rising Phoenix’ performed by georgetragic]
But I don’t fit into your perception. How dare you, define me, I’m beyond what you see as perfection.
I’m a Rising Phoenix…
SOPHIE (narration): Rising Phoenix made its stars into icons. Going into the film, Ellie Cole – an Australian para swimmer and wheelchair basketballer – had already won 15 Paralympic medals…
Sports Commentary: 20 years of age from Australia Cole now in the lead..
SOPHIE (narration): …and received the Order of Australia and been named Cosmopolitan’s 2015 Sportswoman of the Year. But the film took her fame to a whole new audience…
ELLIE COLE: I couldn’t really comprehend just how big Rising Phoenix was going to be until probably the day it dropped on Netflix, and I started getting hundreds upon hundreds of messages from people all over the world, including one David Beckham which just blew my mind. But for me, I’m just very proud, like I said before, to be in a documentary that actively promoted the Paralympic Movement. I think the main basis of messages that I was getting was – we didn’t really understand the struggles that Paralympians go through, you know we can’t believe that there are so many financial struggles just for a Paralympic Games to be hosted, you know, this needs to end and so I think it was almost like a movement of people just crying out for equality. And I have seen a significant change in that over the last twelve months.
SOPHIE (narration): Part of that change was the growing visibility of disabled people in the media, beyond the Games. In fact, Ellie broke the glass ceiling when she appeared on the cover of Australia’s Women’s Health magazine:
ELLIE COLE : I remember for me, you know, picking up my Women’s Health magazine and seeing myself on a cover. I just had this, like, moment where I reflected on my entire life and how I’d almost always been put in a bit of a corner. It’s almost like I was invisible and then for me to be able to hold this magazine and see that, like, people with disabilities are all of a sudden everywhere, Paralympic athletes are all of a sudden everywhere, people are so proud to own us as one of their own, like I know Australia is very proud of their Paralympic Athletes. One of our major supermarketing chains is promoting the Olympic and Paralympic Games this month, and they have quite a few cardboard cutouts of the athletes all across their store, and four weeks ago there was this little girl, she would have been about six years old, she also had one leg and she was standing next to my supermarket poster, and I remember seeing it and it made me tear up because I’d never had that as a child and apparently this young girl saw my cut out, saw that I had one leg, and she just screamed out like ‘Mum there’s a girl that looks exactly like I do.’
SOPHIE (narration): These examples prove the power of representation. That even the smallest amount of visibility and recognition can have a huge impact on individual people, and the world.
But right now, there is very little representation of disabled people in the media, let alone in Hollywood itself. But there is someone who has managed to break through.
JAMEELA JAMIL: Hello, my name is Jameela Jamil and I am an actor, a writer, a host and advocate.
SINÉAD BURKE: So lovely to see you.. My favourite thing about Atlanta…
SOPHIE: Joining Jameela and me in this conversation is Sinéad Burke. Sinéad is a leading disability advocate, who through education, advocacy and design is changing the fashion industry and is also an executive producer on this podcast.
SOPHIE: So I’ve read that you say you’re an advocate first, and all of those other things afterwards. Why is that? Why do you say that?
JAMEELA JAMIL: Well, I think that’s my nature, I think I’m probably recognize still first and foremost as an actor, but I it’s, it’s my driving force in life and it has been since I was 19, and it’s really the only way that I can carry on in this industry, because it’s the industry that I’m in. The entertainment industry is wonderful in many ways and can achieve great things truly on, like, a humane, societal level. But it’s also responsible for putting so much bullshit into the world and so many dangerous narratives, and it’s responsible for so much erasure. People with disabilities are still treated as a mistake, an anomaly that we should just ignore, and pretend aren’t there, and then maybe they’ll go away. And I think it’s really interesting to straddle this industry with being a public figure, as well as having an invisible disability myself, so I kind of straddle both of those worlds and recognize how often I try and bring it up and how often no one wants to hear it from me, they just want me to look nice on the cover of a magazine, and it really hurts my feelings because I grew up with much more visible disabilities and I was in crutches or on Zimmer frames and in wheelchairs. And I remember just how lost and lonely I felt and how I felt like I could never be loved or I could never be accepted, or I could never go out and have fun because I was never able to see that reflected back at me from any form of media – not in any magazines. And in the movies, they portray people with disabilities always as a sob story. That is the story arc for the non disabled person. And they are the tragedy that’s weighing down the non disabled person. They’re never just out getting pissed and having a laugh, you know, they’re never having an awkward sex scene, they’re rarely able to be in comedy. Just because I remember how painful that erasure was I think it’s why I fight for so many different types of representation, not just disability representation, but I feel as though it’s the one that is the greatest emergency of us needing to address.
SOPHIE (narration): So what would better representation look like? Well, currently the UN estimates that around 1 billion people worldwide live with a disability – that’s about 15% of us. But do we see that 15% reflected on our screens?
JAMEELA JAMIL: And I just don’t know how many more examples we need of finally accepting, or like representing a minority and registering how it’s not only good for society at large, it’s also great for profit. You know, the Purple Pound does exist and there is money to be spent. And people do want to see representation and Black Panther, Crazy Rich Asians, Bridesmaids, Shrill, all these different shows that finally, finally paid homage to these different groups who exist in the world everywhere, how well they did, and how it only made the world a better place to have that increased diversity. And so it is, it is up to magazines and media figures to represent and show up.
SOPHIE (narration): But do we see that 15% reflected on our screens? Sinéad Burke, who we heard earlier advocates for the fashion industry to be more inclusive of disabled people. In her TED talk, she spoke about why design should include everyone. And is now the Director of the design organization Tilting the Lens which works to raise the baseline standards of accessibility in design. Her best-selling book Break the Mould, asks what it means to be different in a world where you feel that you don’t belong.
SINÉAD BURKE: The research is really clear when we talk to this about representation because, you know, all speaking characters across the top 100 movies of 2019, only 2.3% had a disability. And of the top TV network shows of 2018, only 12% of disabled characters, who are within a minority already, are played by disabled actors. I mean, when you look at statistics like that, reflecting also on the success of Crip Camp, Rising Phoenix, CODA, Sound of Metal, some of which we have questions about. How do we change this or is the change already happening and we just need to be patient for it to become more accelerated?
SOPHIE (narration): Perhaps change is happening, Just like Rising Phoenix, Crip Camp, mentioned there by Sinéad, broke the mould. The film had a co-director with a disability, USA’s Jim LeBrecht.
JIM LEBRECHT: I was born with spina bifida. I’ve had a career in audio for over 40 years as a first in theater and then in doing sound mixing predominantly for documentaries in the San Francisco Bay Area.
SOPHIE (narration): But Jim’s journey to success has not been straightforward, here he tells Sinéad about the challenges he’s faced in the film industry.
JIM LEBRECHT: I found myself being really the only person that I knew with a disability working in post-production audio. Which I mean, fortunately, although I can’t walk, I grew up in a split level house just north of New York City and my bedroom was on the top floor. And so I was really good at climbing stairs and you know, when you’re working in theater as a sound person, you have to be able to listen from different areas in the theater. So I was able to park my chair and climb out and listen from different locations. And that gave me an incredible training ground in regards to the aesthetics of sound. And I then wound up working for an incredible facility in Berkeley – the Saul Zaentz Film Center. Saul produced The English Patient and Unbearable Lightness of Being. And there was a great facility there and the wheelchair access was very good. So I was able to work my way up there, then started my own business.
SOPHIE (narration): Crip Camp explores Jim’s childhood at a summer camp and how a group of friends became history-making disability activists.
AUDIO FROM CRIP CAMP: ‘The world always wants us dead, we live with that reality..’
JIM LEBRECHT: At the time, so many kids just like me were being sent to institutions. It was just a continuous struggle.
AUDIO FROM CRIP CAMP: ‘…most disabled people like myself are unable to use public transportation.. ‘
JIM LEBRECHT: We needed a civil rights law of our own.
AUDIO FROM CRIP CAMP: ‘A rehabilitation programme…’
SOPHIE (narration): Co-directed with Nicole Newham, and with Barack and Michelle Obama as executive producers, the film was nominated for Best Documentary at the 2020 Academy Awards.
AUDIO FROM THE ACADEMY AWARDS: Members of the Academy’s documentary branch have chosen these nominees for best documentary feature and they are: Crip Camp…
JIM LEBRECHT: I don’t like to say ‘oh my gosh you know we broke down the walls’ and everything. But Crip Camp was really well regarded. And what it showed Hollywood was that there are authentic stories coming from the disabled community that people don’t know about and that – very rich stories – and that also people with disabilities can make Oscar-nominated films. And I think that it, and it’s also good business. So as we’ve seen with other communities that were marginalized, once we are able to be the people that are producers and directors and editors and writers, that we know where these stories are. And they’re unique and they’re, they’re fresh and they’re new, and they’re incredibly compelling and people want to see them. So I think that I’ve heard of, kind of a Crip Camp Effect, that I think helped open the door much wider than it had been just cracked before.
SOPHIE (narration): Jim spoke about wanting to see disability represented more widely in the film industry – with disabled actors cast in every kind of role:
JIM LEBRECHT: The world that I want to live in, is one in which there is a performer who has a disability, playing a role that was written specifically for someone with that disability. My kind of joke about this is that I live for the day when I see a one armed barista in the background of a drama and that they are there because we are part of the fabric of society.
SOPHIE (narration): Keely Cat-Wells is from the UK and based in L.A. She is the founder of C Talent – an agency that represents disabled artists, athletes, and influencers. She tells us about some of the barriers that still persist in the industry.
KEELY CAT-WELLS: I quickly found, like, when we have clients who go to jobs that are completely unrelated to disability, they would consistently be asked to speak about their disabled experience. And it was almost like people when they spoke to their non disabled people, would find the most interesting thing about them would be disability. And whilst obviously it’s incredibly important that we have those experts in disability and we do some disability consulting as well, and we represent some disability subject matter experts, and that’s incredibly important. But there is also a difference between those subject matter experts and also people who are experts in acting, in cinematography. And we mustn’t confuse the two. I think it gets exhausting for disabled people to consistently be educating others on their lived experience or their access requirements. So I think as soon as we can get these experts in subjects beyond disability, then we can both normalize the disabled experience and then break down those barriers in the employment process and beyond.
Everyone is definitely open to having more conversations, but what I would like to see is more action taken from those conversations, definitely seeing more and more organizations popping up that are doing the work, which is amazing. But I still think we have this massive issue of pipeline and behind the camera representation, even though I think we’re slowly, slowly getting there with in-front-of-the-camera representation. But I would absolutely love to see this inequitable systems changed. And I would like to turn those doubts that people have into questions. I still think people are very afraid to ask and to touch on disability just because they’re not familiar with it. And it’s – they’re just scared. I think. So soon as we can kind of take that fear away, then I think we can move forward much quicker. But we’re getting there slowly but surely.
SOPHIE (narration): Organisations like Keely’s are changing the conversation around disability. But there are still long-held and deeply entrenched stereotypes to confront – and we don’t need to look back far, to find them.
KEELY CAT-WELLS: Historically, if we look back to Captain Hook and the Hunchback of Notre Dame and the media’s perception of disabled people, it’s been a villains or a pity. And I think to bring that back to society and be like, ‘No, that’s not what disability is. This is what disability is’ will be monumental to shift perceptions and inclusion.
SOPHIE (narration): From books to films, TV, and theatre – negative portrayals of disability are tightly woven throughout our culture.
Even some of our most iconic characters are made villainous by their physical or psychological impairments: whether it’s Star Wars’ quadruple amputee, Darth Vader… Shakespeare’s ‘poisonous’ hunch-backed Richard III… or the wheelchair-user Dr Strangelove.
As Keely mentioned, sometimes the representation of disabled people does more harm than good. The late, great comedian and journalist Stella Young, who happens to be a wheelchair user, in her acclaimed TED Talk describes those images you so often see of disabled people. This is what she says.
STELLA YOUNG CLIP: And in the past few years we’ve been able to propagate this lie even further via social media. You know, you may have seen images like this one, ‘The only disability in life is a bad attitude’. Hmm. Or this one – ‘Your excuse is invalid’..indeed. Or this one – ‘Before you quit, try.’ Yeah.
SOPHIE (narration): You know, you might have seen the one – the little girl with no hands drawing a picture with a pencil held in her mouth. You might have seen a child running on carbon fibre prosthetic legs. And these images – there are lots of them out there – they’re what we call inspiration porn. I use the term porn deliberately. Because they objectify one group of people for the benefit of another group of people. So in this case, we’re objectifying disabled people, for the benefit of non disabled people. The purpose of these images is to inspire you, to motivate you so that we can look at them and think ‘well however bad my life is, it could be worse – I could be that person.’
CHRISTINA MALLON: Some ads are created to make the viewer cry..
SOPHIE (narration): And Christina Mallon, Head of Inclusive Design at Wunderman Thompson says it’s a real problem:
CHRISTINA MALLON: And to get that emotional gut reaction to keep your eyes on screen. But these ads do nothing for the disabled community. They actually hurt the disabled community. So when we think about inspiration, we should think about people inspiring to act, not inspiring to cry. And inspiration porn inspires people to cry and pity the community. And when that is one of the only kind of ads that is out there about disability, then it makes disability look like a negative experience. And like in any life experience, you have positive and negative ones, and that’s disability. But it shouldn’t just be the one that people see that is inspiration porn.
SOPHIE (narration): So often we see disabled people represented in outdated tropes; the pitiful, the vulnerable, the weak secondary character, or the villain, or superhuman. These tropes are harmful and if unchallenged, leave disabled people trapped. But what about no representation whatsoever? Eryn Brown is the founder of 1 in 4 – a new disability coalition creating systemic change for representation and access in Hollywood and also a partner at Management 360, one of Hollywood’s biggest talent agencies. She told us about the personal cost of feeling unseen.
ERYN BROWN: It’s woefully under represented, and I guess I’ve always been subconsciously aware of that. But my real awakening to that has been in the past couple of years about how missing it is on screen, something you internalize as a disabled person is that you don’t deserve to be portrayed on screen. And my awakening is how misguided that is.
SOPHIE (narration): Eryn’s story reveals just how much representation matters. And it can be especially powerful for children growing up with a disability, seeing themselves on TV or in the media. This Is RJ Mitte, one of the stars of hit American drama Breaking Bad.
RJ MITTE: In mass media with disability, wasn’t really there. No one really talked about disabilities. Like, I grew up talking about disabilities because of my grandparents and I having a disability and all the people in my life from physical, to internal, to mental disabilities. So I always grew up around it. I never realized how, to the majority of the world at the time, it was so abnormal. And so when I was first starting acting, I actually technically don’t see myself as disabled. I and even with, like, cerebral palsy, I don’t see myself categorized as having a disability, even though I do.
SOPHIE: So were all casting directors aware that you were –
RJ MITTE: – I never told them. I never told them. Never told them. So my resumé I would submit would just have me. I didn’t put cerebral palsy in, I didn’t think it was relevant.
SOPHIE MORGAN: Why not? Why not?
RJ MITTE : It wasn’t really relevant. Why do you need to know something that really has…it’s not in the breakdown. It’s not in this. It’s not relevant. And so if they were looking at me a little funny, right. They were like, ‘There’s something, like, wrong with this kid,’ I would go, ‘Oh, by the way, I have cerebral palsy,’ and that was just kinda –
SOPHIE MORGAN: – And then what? And then what?
RJ MITTE: Nothing! Nothing! What are you going to say? ‘Oh, sorry we’re not going to see you now’?
SOPHIE MORGAN (narration): Since Breaking Bad’s finale, RJ’s gone on to feature in multiple films and TV shows.
RJ MITTE: And you know I think everyone has a right to audition for a role, disabled or non disabled. Your role should not discriminate on that. It should be about the character, who that character is. Like, you know, it’s not every character that should have CP, but it doesn’t mean that the character can’t have CP. Like, it’s these nuances on just looking past the shell and looking in the more depth characters.
SOPHIE (narration): But now, from the camera to the catwalk: what about representation in the fashion industry? Let’s go back to Sinéad Burke.
SINÉAD BURKE: I never saw anybody who looks like me in spaces where beauty was the underlying narrative, because our bodies were not considered to be beautiful and It was such a joy to be able to enter into some of those spaces, but in time I really began to reflect. Is the system changing? Is it easier for disabled people to enter into the fashion industry based on the trajectory that I’ve been able to gain and build, or did the system change for me? And in some ways, I think a bit of both, but more that it changed for me, but that’s not enough – because there are so few of us who get to enter these rooms that we cannot be satisfied by our presence alone.
SOPHIE (narration): So, we cannot be satisfied by visibility alone and we can no longer settle for inaccurate depictions of disability and must hold to account those who fall back on outdated and damaging clichés.
As Judy Heumann, star of Crip Camp says, “It’s long past time for this cultural invisibility of disabled people to end. News outlets, Hollywood and leading social media platforms must all work towards authentic inclusion.”
What’s clear is that only by being in the room where the decisions are made and power is brokered can we guarantee accurate representation.
So join us next time for episode 4, where we’ll explore physical accessibility, and how our inaccessible environments mean that, too often, disabled people’s needs are not met.
SOPHIE (narration): These podcasts have been made possible by the support of Proctor and Gamble. P&G share our ambition to create a more equal world, a world where everyone can have equal access and the opportunity to thrive. We are very grateful for their partnership in making these conversations a reality. 61% with a direct involvement in the production of the podcast, including guests, identify as disabled.
SEAN TOWGOOD: Hi there, I’m Sean Towgood. I have Cerebral Palsy and I’m a junior producer on this podcast. For me representation, both behind the microphone and behind the scenes, are crucial. For more on this story and to follow along, as well as to join the discussion, go to htyt.world.
[goodbye and credits]
SOPHIE MORGAN: This podcast was created by Greg Nugent: co-founder of Harder Than You Think.
I’m Sophie Morgan: your host and executive producer.
Fellow executive producers are: Sinéad Burke, Greg Nugent, Barnaby Spurrier, Laura Ims, Marc Pritchard, and Kimberly Doebereiner
Thank you to the IPC and Channel 4 for their support, and use of archive material.
Thanks to our podcast production partner Stripped Media, and also to Seneca Women for their assistance with distributing this show.
If you want to follow the Equal Too story, and join the conversation #EqualToo, go to our website htyt.world where you will also find the transcript and video versions of the podcast, along with subtitles and a BSL-signed version in the coming days.