Transcript of Equal Too Episode 2: How We Change the Law
[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…
[MUSIC fades under narration]
Sophie Morgan (narration): Around the world, there are laws that protect disabled people from discrimination. But in this episode, we’ll be talking about why some current legislations may not enable, empower, liberate or protect disabled people as much as they should.
I’m Sophie Morgan, this is Equal Too. Episode 2: ‘How we change the Law’
Tatyana McFadden: What can we do to push equality for people with disabilities in high school? The only thing that we could do was to sue.
Tanni Grey-Thompson: I think it’s about having fairness of opportunity is a really big part of it. And I do think disabled people have to take some responsibility.
Tatyana McFadden: Laws can’t be taken away and it’s permanent and it’s for the right reason.
[MUSIC amplifies with chorus (Performed by Toni Hickman)]
I’m a rising phoenix
I’ll rise above you
I’m a rising phoenix
I’ll rise above you
[MUSIC fades out under narration]
Sophie (narration): Today over 1.2 billion people around the world are living with a disability. We make up 15% of the global population and yet, despite many countries establishing laws to protect our rights, no disabled person is immune to discrimination.
[Clip 1: Channel 5 news]
Newsreader: Last year across 36 police forces in England and Wales, more than 7,300 disability hate crimes were reported, but only 1.6% resulted in perpetrators being charged…
[Clip ends]
Sophie (narration): Disability discrimination, often called ableism, comes in many forms. From not providing a wheelchair ramp or an interpreter at a press briefing –
[Clip 2: MP Vicky Foxcroft]
Vicky: 2.6million spent on the new press room, yet still no interpreter…
[Clip ends]
Sophie (narration): to more extreme breaches in human rights such as the practice of shackling or forced sterilization. All around the world disabled people depend on laws to safeguard our rights.
In the UK we have the Equalities Act, in the US the ADA, in Colombia there is Law 1618, and in Australia there is the Disability Discrimination Act.
In some countries, these acts took disabled activists years of blood sweat and tears to bring in. I highly recommend watching the Oscar nominated documentary Crip Camp to get an idea of how hard fought the ADA was in the US.
[MUSIC starts : electric beep beats]
But even when there are laws in place, when researching for this episode, we came to find that more often than not, it falls upon disabled people themselves to enforce those laws, or in some cases, outright change them.
[Clip 3: Tatyana goes for gold]
Commentator: Here she goes again, going for the double in Rio…
[Audio fades under narration]
Sophie (narration): Even Paralympic legends, like USA’s Tatyana McFadden – who can be seen on television screens around the world as she competes in Tokyo – even Tatyana experiences discrimination.
Commentator: … but Tatyana McFadden, well she’s on the hunt for 6 golds now. And that’s the first of them.
[Clip ends]
Sophie (narration): Growing up in the US, Tatyana began wheelchair racing at the age of eight. At 15, she competed in her first Paralympics in Athens, in 2004 – bringing home two gold medals. But when she returned home to Illinois and started high school, Tatyana found that even Paralympic champions would not be treated equally to non-disabled high-schoolers.
Tatyana: Coming into high school, all I wanted was to do track. That’s the club that I wanted to do.
Sophie (narration): Her school said she was not allowed to participate in high school sports due to her wheelchair being a ‘safety hazard’ and ‘creating an unfair advantage’.
Tatyana: I didn’t want to do anything else, I didn’t want to do chess, I didn’t want to do theatre, I just wanted to do high school track. My first year, I didn’t think how tough it was going to be. And I was denied a uniform and I was denied to run alongside of the able-bodied runners, and so I thought what can we do to push equality for people with disabilities in high school? The only thing that we could do was to sue. When we went against the state of Maryland we won, and that took four years. In college, it became federal when we…
[Fades under narration]
Sophie (narration): Tatyana’s lawsuit, which requires schools to provide equal opportunities for students with disabilities, was passed in 2008. It is now known as “Tatyana’s Law”.
Tatyana: But thinking about going through that lawsuit, and I thought of my sister Hannah immediately – she’s also a Paralympic athlete – I wanted her to have the best experience possible, and people following after that. Now that it’s federal and nationwide, it’s called Tatyana’s Law [nervous laugh]. It’s so cool going through that as a high schooler, and it was extremely hard. And, yeah it was really tough but laws can’t be taken away, and it’s permanent and it’s for the right reason.
[MUSIC fades out]
Sophie (narration): So what does this story teach us? It may have resulted in a positive and lasting outcome, but isn’t it shocking to think that equality of opportunity in sport may not have been possible for disabled children in the US had this Paralympic athlete not used every ounce of the resilience and determination we see her demonstrate on the track to make this happen? And why is it that the race for equality also has to be a battle? We all have human rights, so when those rights aren’t being granted, what then?
[Clip 4: CRPD]
Woman: The UN’s CRPD talks about how countries should make sure that people with disabilities have the same rights as others…
[Clip fades under narration]
Sophie (narration): In 2006 the United Nations adopted an international treaty to protect the rights of people with disabilities. It’s called the Convention on the Rights of People with Disabilities or the CRPD. Its goal is to wipe out all forms of disability discrimination, enabling disabled people to live independently, ensuring an inclusive education system, and offering protections from all forms of exploitation, violence and abuse. But it might shock you to learn that many countries have not yet ratified this convention, including….the US!
Deborah McFadden is a founding member of Athletics for All. Oh– and she’s also Tatyana’s mum. Here she explains why the CRPD matters.
Deborah McFadden: So it’s very important that the UN ratifies the Convention on the Rights of Peoples with Disabilities. We are a blessed country to have so many wonderful laws, such as the ADA, the Americans with Disabilities Act, 504, 94-142, IDA. But, what we’re saying is to the world, “we can do it our own way” and we’re not being an example to those countries that have asked us to be an example, of what it’s like to protect the rights of all people with disabilities. It’s a policy statement. It’s a leadership issue. We still have a long way to go in this country, but if they don’t have to do it, why should we do it? It’s an operational document. It’s something to say that these are the standards that we need to have for people with disabilities around the world. And we need to be a leader in that. To say all people have rights and protections.
Sophie (narration): And the US isn’t alone, there are many other countries yet to ratify the convention. In a later episode, we’ll be asking whether the LA Paralympic Games in 2028 might be the tipping point that encourages the US to take that step, and if so, what that might mean.
Disabled people’s organisations around the world agree that in order for change to be made, we need strong leadership, with disabled people themselves leading the charge. “Nothing about us without us”, as they say. In the first episode we spoke with former British Paralympian Dame Tanni Grey-Thompson, and here she is again, explaining why she got into politics.
Tanni: I think it’s about having, you know, fairness of opportunity is a really big part of it. I do think disabled people have to take some responsibility. You know, we can’t just sit around and wait for it to be done to us or for us because I haven’t got time to sit and rely on anybody else. So that’s probably why I kind of have this sense of urgency about a lot of stuff that I do. So I haven’t got time to sit and wait for somebody to say, “oh, here you go”. I think some of that powerful political voice of disabled people has also been lost a little bit over the years. There are still organisations of disabled people, but in terms of the Equality Act, disability just ends up being a bit lost. Don’t really know where we are, but you know,
[MUSIC starts: Chilled beat]
when we’re still fighting for basic access to get into a building or to get into, you know, High Court you know, just those things. We shouldn’t be fighting for some of those really, really basic things. So I do think disabled people need to kind of you know, it needs to be more than– you know, I’m part of a group of quite strong disabled people, but there needs to be more disabled people asking for more things, because otherwise they look at me and go “Oh, God, it’s her again” and just ignore me. So one of the things I try to do is really important is just get more disabled people to talk about these things and to give them an opportunity and support to be an alternate voice.
[MUSIC beat increases and out fades under clip]
[Clip 5: New senate appointee]
Reporter: Well Canada’s senate is about to get a little bit fuller, the Federal Government announcing the appointment of 7 new people to the red chamber…
[Clip fades under narration]
Sophie (narration): In Canada in 2016,14-time gold medalist Paralympian Chantal Petitclerc also made the switch from record-breaker to law-maker, moving into politics as a Canadian Senator.
Chantal: It was a bit of a strange moment because I did not plan for it. And to me, I was exactly at that time after being Chef de Mission for Rio, after coaching for London to choose, you know, what will the second part of my life be? Do I want to stay in sport? Do I want to do something different? But, you know, it is such an amazing privilege and responsibility to say, I can be in parliament, I can try to be the voice of not only persons with disability…
[Fades under narration]
Sophie (narration): Using her position of influence in government, Chantal has been able to make a monumental impact on a very controversial but life-changing matter for disabled people: the assisted dying bill.
[Chantal fades up]
Chantal: …one of the very first impacts that I had was also one that was very difficult and intense and it was only a few months after I was appointed in the Senate of Canada, where we had to deal with a very, very important bill on medical assistance in dying. And it was very of course, I mean, you know, it is so delicate and so important and at the same time so hard. It’s so, so difficult to just even think and talk about it. This really talks to persons and some individuals with a disability in intolerable pain who want to make their choice for themselves. And so I was the sponsor of that Bill and trying to be the voice of those individuals who wanted to have the right to make that choice for them. And of course it was very tough for me. It was also a very tough conversation in Canada, because as in many countries in the world, persons with disability still have a lot of vulnerability, which is strange because when you’re a Paralympian, you’re like this champion of persons with disabilities. And sometimes you have sponsors, you have visibility, people recognise you on the streets. So it was very, very eye opening for me to come from being this multi-medalist, very able and strong and independent, to have the voices of other persons with disabilities, with other challenges and vulnerabilities, and being able to also say, there is not one person with a disability. There are thousands and millions of them. And each have different voices, different choices, different strengths, different vulnerabilities. But each and every one of them, and me, should have the right to choose how they want to live their life and maybe how they want to end it.
Sophie (narration): In Parliament, Chantal used her role to advocate for all disabled people. But you don’t need to be a politician to change your world.
[Clip 6: Pilar]
Reporter: The mayor of Lima, Peru is confronting disability challenges head-on. And earlier this week he discovered just how challenging life in a wheelchair can be when he nearly fell out of his chair.
[Clip ends]
Sophie (narration): Pilar Jauregui is a wheelchair badminton champion from Peru. She wanted the lawmakers of Lima, the capital city of Peru, to understand the difficulties that she had navigating the streets in her wheelchair.
Pilar: [Starts speaking in Spanish]
[Fades under narration]
Sophie (narration): So she challenged Lima’s Mayor Jorge Muñoz to try it for himself…
[Pilar fades up and then under translation]
Translator (over): I found it difficult when going out, shopping, going to the pharmacy, basically everything. Many times I have run into poles and garbage cans, things like that. Or I found that the ramp was too steep and difficult to go up and down.
So that is when I recorded a video and posted it on Twitter and Facebook saying that we’re not invisible and I challenged the mayor to try and pass through some of these streets.
At the beginning the challenge was to try using the wheelchair for a day. After that, the mayor went viral all over the social networks. And the next day the mayor was already in the wheelchair and I told him which routes I had to travel along. They implemented the regulations so that they could build ramps all over Lima. They’ve now built around 3000 accessible ramps. There are now regulated standards for how a ramp should be built and how there should be a ramp on every corner.
Thanks to the Games there has also been an improvement in a social sense, society-wide. It can be seen that there is much more respect as in the past people used to park their cars on the actual ramps. Now they are more careful about that.
[MUSIC: Mellow bass beat]
[Spanish audio fades up and fades out]
Sophie (narration): Ok, so we’ve heard how Paralympians have made an impact in the law – But what about disabled people who aren’t Paralympians?
Haben Girma: I’ve faced so much discrimination in the United States, racism, sexism and the worst: ableism…
[Haben continues under narration]
Sophie (narration): Haben Girma, who is deaf-blind, has become one of the most prominent disability rights activists in the world. President Obama even recognised her work when he named her a White House Champion of Change.
Haben: …I got so fed up with ableism that I wanted to make a career out of fighting it.
Sophie (narration): Haben has used her position to change the law.
Haben: One of the things I was proud of is to help increase reading access for blind readers. There was an online library and blind readers were struggling to access books in the library. So we asked the company to make their books accessible. They ignored us and we used the Americans with Disabilities Act to compel them. And after the lawsuit, they agreed to work with the National Federation of the Blind to make their library accessible for blind readers.
Sophie (narration): Haben shows us that activism works. And she is not alone. Today, despite the access and attitudinal barriers that disabled people face, all around the world activists with disabilities are pushing for changes to the laws that directly impact their lives. In India, Manasi Joshi, a young para-badminton player, is campaigning to reduce the cost of prosthetic limbs. Or in Nigeria, Rasak Adekoya who lost his sight in a car accident as a young adult, is helping Nigerians get into employment.
Others are more political. In Greece – Stelios Kympouropoulos began his career as a psychiatrist, but in 2019 became a Member of European Parliament, working to help disabled people live independently. And in 2020, another activist, Éléonore Laloux became France’s first councillor with Down Syndrome.
Advocates are even making a difference at an international scale: Daphne Frias is a Mexican-American campaigner with cerebral palsy, who helps disabled people participate in climate action. And Nujeen Mustafa is a Kurdish Syrian refugee who, in 2019, became the first person to address the UN Security Council from a wheelchair – and is now a global advocate for refugee children with disabilities.
Sharing these examples with you is exhilarating. They are just a handful of stories. But all of these people represent countless more disabled individuals who are working to take control of the narrative and shift the dial.
[MUSIC fades out]
Often we see disabled people working in isolation, focusing on the issues that matter to them, in the countries where they live, and rightly so. But it’s time we joined together.
[Clip 6: WeThe15 advert]
Piano music and a montage of voices:
Voice 1: You’re such an inspiration
Voice 2: So brave
Voice 3: You remind me to be happy
Voice 4: I love that you don’t let it get you down
Voice 5: Good for you!
Voice 6: It breaks my heart…
[Fades out under narration]
[MUSIC: Mellow bass beat restarts]
Sophie (narration): Recently, a global campaign called #WeThe15 has launched, timed to coordinate with the Tokyo Games, to raise awareness of the fact that we remain the most underrepresented and underserved group on the planet. The International Paralympic Committee, The International Disability Alliance, United Nations and UNESCO have all come together to amplify the cause because we all recognize that now is the time to remove inequality and inactivity.
We spoke with one of the founders of the We The 15 campaign Eddie Ndopu, an award winning, internationally acclaimed activist and humanitarian from South Africa. One of the things he is known for is his engagement with young activists to pressure lawmakers around the world to provide improved educational opportunities to youths with disabilities. Eddie explains how he goes about advocating for change.
[MUSIC fades out]
Eddie: You know, Sophie, I think at the end of the day, it is so critical that we have an intersectional approach to disability, right.? That, of course, we know that we are not a monolithic group. Right? Of course we know that. But I think sometimes advocacy requires what is often called strategic essentialism, where we sort-of strip down our complexity in order to advocate for change in terms of legal rights or legislation. And so the temptation to flatten the disability experience in the name of advocating for recognition and fundamental rights and freedoms, that often means that we do so we do that stripping back at the expense of intersectionality, right? At the expense of a profound recognition that we are never just one thing. Because I think, how do we think about disability and gender? How do we think about disability and sexuality? How do we think about disability and race? And then how do we think about disability across geography, right? And that is the magic of the lived experience of disability, is that we are disabled and we are so many other things simultaneously. And what the move– what I think needs to happen is that texture to our lives and our lived experience, that is what needs to be put at the forefront, right?
Sophie (narration): The questions that Eddie asks need to be carefully considered. They need to be asked of one another and we all need to think about the answers. This subject requires us to ask questions of ourselves and our understanding of what disability justice and equality means.
Eddie, Tatyana, Chantal, are all disabled people making change for disabled people. Which is vital when it comes to representing the many different lived experiences of disable people. As Eddie says we are not a monolith. But no matter how successful these change agents might be in their field, they too encounter discrimination.
Eddie: … so I was in Manhattan, downtown Manhattan, showing up at this really fancy building for a meeting. And I make my way to the entrance of the building. I’m all dressed up looking absolutely fabulous with my Chanel glasses. And I arrive at the building and, the person at the door, the keeper of the building, sort of looked at me and said, “um, can I help you?” And I said, “no, I’m fine. I’m just here for a meeting.” And he said to me, “oh, the doctor’s rooms aren’t here. The doctor’s rooms are across the street.” And I was like, “I’m not here to see a doctor.” But, you know, he automat– and this was five minutes before I had to be psychologically ready for a really important meeting that’s quite significant. And so that was the moment where I was just like, “oh, wow, OK. No matter how successful I think I am, no matter how accomplished–” and this is the thing, Sophie: Success does not inoculate us against ableism.
Sophie (narration): And what about the toll that this has on disabled activists? Here’s Haben again.
Haben: So the way a lot of these laws are structured, they put the burden on disabled people to remove the barriers. That is a lot of work, a lot of time, a lot of emotional and physical energy. It’s very exhausting and it’s not fair. The burden should be on the institutions, the institutions who have the power to remove the barriers rather than forcing disabled people to file complaints and do the work of removing all the barriers. I do struggle with advocacy fatigue. It’s really hard. And having a community of people who understand me is really crucial because if I’m too tired to advocate for a barrier, someone can step in. I was going to ride a Ferris wheel in a new city I was visiting. I was visiting Atlanta, Georgia a few years ago and the person at the Ferris wheel said “she can’t come in, no dogs”. I had my guide dog and my friend stepped in and said, “this is a service dog, under the Americans with Disabilities Act, the dog gets to travel with her”.
[MUSIC: Futuristic beat]
And the person gave in and let us ride the Ferris wheel. So it helps to have a community to help shoulder the burden of advocacy. And when you’re too tired, someone else can step in and help.
Sophie (narration): So how do we fight for our rights going forward? Do we need more than the law?
Haben: Laws to help move our culture in the direction it should go. Laws are created when there’s a systemic problem and you need litigation to help fix it. So it’s important to have laws. It’s not the only tool. It’s a very important tool. But it goes alongside other tools such as stories and leadership and having great examples and guides on how to do the right thing.
Sophie (narration): I spoke to leading disability activist, actress Jameela Jamil, and co-producer of this podcast Sinéad Burke, to see what we feel is needed to galvanise people to accelerate change.
Jameela: I mean, I think it begins with nondisabled people showing the [bleep] up. That’s where I think it begins, in the same way that the most traction we’ve ever seen for Black Lives Matter is when everyone got involved. And that’s what made the noise so loud that finally huge corporations and the government and the police even, in some states, were able to take notice of this incredibly important and vital movement that’s been going for seven or eight years, I think, more maybe even now. I’ve lost track of time because of the pandemic [all laugh]. I think it just needs all of us together and as I said, I think a lot of people have now hopefully realised that disability can come into your life at any time. And it’s time to show up and help prepare the world. And I think amazing activists like Imani Barbarin and all these different voices. Both of you. So many– Ade Adepitan, there are so many voices out there who haven’t been given the platform that they deserve.
Haben: We also need stories in the media, film, written stories, visual stories, auditory stories that will reach communities and shape their definitions of disability and interdependence. And there are organizations that are doing that, getting positive representation of disability on radio so that people in remote parts of Ethiopia or India can learn about positive disability representation, alternative techniques. The word ableism is English. Let’s get that word into other languages. Let’s have disability activists who speak those other languages natively, come up with their own terms for the word ableism. So it could be part of the culture and community and strived for inclusion.
Sophie (narration): In order to make change therefore, we need a holistic approach. I asked Eddie his opinion on what we can learn from other movements who have achieved what we are aiming for. Movements who are one step closer to reaching equality.
[MUSIC ends]
Eddie: The success of other movements is in, you know, how they were able to leverage the power of art and pop culture as a way to change hearts and minds and shift narratives and then build on that for institutional legislative changes. I think we’ve done it the other way around, right? We started with the Convention on the Rights of Persons with Disabilities, but we don’t have a disabled actress who is an Oscar winner and who’s on the cover of Vogue.
[MUSIC: ‘Superheroes (Rising Phoenix)’ main theme.]
Sophie (narration): So even when disability rights are enshrined in law, is there a danger of thinking that the battle is won? Today we’ve heard from advocates and activists, record-breakers and lawmakers. Each story is different. But they’ve all played a part in the fight for a more equal and hopeful world. But what I think they’re telling us is that the change we need is too often over-reliant on disabled activists to make it happen. Too many of the laws that we have been talking about are laws our activists have been responsible for creating. The change we need is that new laws that directly or indirectly impact disability are demanded by everyone, for everyone.
This has been Equal Too. Next time, we meet the change makers of film, television, fashion, and beyond – to explore representation: what is it? Why it matters, and what you can do about it.
I’m your host, Sophie Morgan. We’ll see you next time.
Sophie (narration): These podcasts have been made possible because of the support of Proctor & 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% of people with a direct involvement in the production of the podcast, including guests, identify as disabled.
Meg: Hi I’m Meg and I’m disabled. I’m a wheelchair user with a brain injury. I’ve been working on this podcast as a production coordinator but I’ve also been given the opportunity to do a bit of scripting. The change I would like to see with more productions like this is with disabled people working behind the scenes as well as disabled people on the mic. If you want to follow the story and join the conversation go to htyt.world.
Sophie (narration): This podcast was created by Greg Nugent, co-founder of Harder Than You Think. I am 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 transcripts and video versions of the podcast, along with subtitles and a BSL signed version in the coming days.
[MUSIC intensifies and ends]