October 5, 2021 • 32 mins
Episode two in the series will explore how the rights of disabled people are changing and what more needs to be done to create a more equal world moving forward. Featuring Jameela Jamil, Chantal Petitclerc, Eddie Ndopu, Pilar Jauregui, Deborah McFadden, Haben Girma and Tatyana McFadden, we’ll discuss the legislative progress that has been made but also why some current legislation may not empower or protect disabled people as much as they should.
In this episode, we talk to sports stars, politicians and activists about their experiences, the laws they are fighting to change, the barriers they are trying to break down and their greatest achievements in this space so far.
Hosted by Sophie Morgan and executive produced by Sophie Morgan and Sinéad Burke, Equal Too has been created by Harder Than You Think, the award winning team behind Emmy award winning Netflix documentary Rising Phoenix, and P&G Studios. The podcast aims to continue the conversation that the documentary started.
Equal Too: Achieving Disability Equality is a new special six-part series, featured on Seneca's Conversations on Power and Purpose series, that explores the biggest challenges faced by the disabled community and starts a conversation about what is needed to drive equality.
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Episode Transcript
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Speaker 1 (00:00):
There's a young boys was cut up from our surgery.
Prosthetic picts burgery telling me I'm normal, But normal would
they never really menacing? They are always painting discriminated what
the world around the world, there are laws that protect
disabled people from discriminations, but in this episode we'll be
talking about why some current legislations may not enable, empower, liberate,
(00:25):
or protect disabled people as much as they should. I'm
Sophie Morgan. This is equal to episode two, How we
change the law? What can we do to push equality
for for people with disabilities? In high school, the only
thing that we could do was was to see I
(00:50):
think it's about having you know, fairness of opportunity is
a really big part of it, and I do think
disabled people have to take some responsibility. Last camp being
taken in a way and it's it's permanent in for
the great reasons m oh your Market said, the persons
(01:32):
have beloved the blood to hit the g Today, over
one point to billion people around the world are living
with a disability. We make up fifteen percent of the
global population, and yet despite many countries establishing laws to
protect our rights, no disabled person is immune to discrimination.
Last year, across thirty six police forces in England and Wales,
(01:54):
more than seven thousand, three hundred disability hate crimes were reported,
but only one point six percent resulted in perpetrators being charged.
Disability discrimination, often called able is um, comes in many forms,
from not providing a wheelchair ramp or an interpreter and
a press briefing two point six millions spent on the
(02:15):
new press room, yet still no interpreter, 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 there's the a
d A. In Colombia there's Law sixteen eighteen, and in
(02:38):
Australia there's 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 cryp Camp to get an idea of how hard
fought the A d A was in the US. But
even when there are laws in place. When Ris searching
(03:00):
for this podcast, 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. Yes,
he goes again, going for the double in Even Paralympic
legends like usas Tatiana McFadden, who can currently be seen
on television screens all around the world as she competes
(03:23):
in Tokyo. Even Tatiana experiences discriminations. But mcfanna while she's
on the hunt for six golds now and that's the
first of all. Growing up in the US, Tatiana began
wheelchair racing at the age of eight. At fifteen, she
competed in her first Paralympics in Athens in two thousand
(03:43):
and four, bringing home to gold medals. But when she
returned home to Illinois and started high school, Tatiana found
even Paralympic champions would not be treated equally to non
disabled high schoolers coming in into high school. I'll I'm
one end to to do track. That's the that's a
club that I wanted to do. Her school said she
(04:05):
was not allowed to participate in high school sports due
to her wheelchair being a safety hazard and creating an
unfair advantage. I didn't want to do anything else that
I didn't want to do Chazz. I didn't want to
do be in the theater. I just wanted to do
high school track. And my my first year, um, you know,
(04:29):
I didn't think how how tough it was going to be.
And I I was denied a uniform, and I was
denied to run alongside of of the of the able
bodied runners. And so I thought, you know what, what
(04:51):
can we do to push equality for for people a
disabilities in high school? And the only thing that we
could do was 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 worked with
(05:15):
Tatiana's lawsuit, which requires schools to provide equal opportunities for
students with disabilities, was passed in two thousand and eight.
It is now known as Tatiana's Law. Thinking about going
through that lawsuit, and I thought of my sister Hannah immediately.
She was also a Paralympic athlete, and I wanted and
(05:36):
wanted her to have the best experience possible. And people
following after that, and now that it's it's federal and
it's nationwide, you know, it's it's called the Tatiana's Law,
and it's it's so cool going going through that as
a high schooler and it was extremely hard, and yeah
(06:01):
it was it was really tough. Um, but it last
camp being taken away and it's it's permanent in for
the right reason. So what does this story teach us?
It may have resulted in a positive and a lasting outcome,
but isn't it shocking to think that equality of opportunity
in sport may not have been possible for disabled children
(06:23):
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? The U n c
(06:44):
RPD talks about how countries should make sure that people
with disabilities have the same rights as others. In two
thousand and six, the United Nations adopted an international treaty
to protect the rights of people with disabilities. It's called
the Convention on the Right of People with Disabilities or
the crp D. Its goal is to wipe out all
(07:05):
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
(07:29):
member of Athletics for All oh and she's also Tatiana's mom.
Here she explains why the crp D matters. So it's
very important that the U N ratifies the Convention on
the Rights of People with Disabilities. We are a blessed
country to have so many wonderful laws, such as the
Americans with Disability Zack Tribal four two idea. But what
(07:55):
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.
(08:16):
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, and the US isn't alone.
There are many other countries yet to ratify the convention.
(08:39):
In a later episode, will be asking whether the l
A Paralympic Games might be the tipping point that encourages
the US to take that step, and if so, what
that might mean. Disabled people's organizations around the world agree
that in order for change to be made, we need
strong leadership with disabled people themselves is leading the charge.
(09:01):
Nothing about us without us, as they say. In the
first episode, we spoke with former British paralympian damed Tanny
gray Thompson, and here she is again explaining why she
got into politics. I think it's about having you know,
fairness of opportunity is a really big part of it,
and I do think disabled people have to take some responsibility.
(09:23):
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 had this set
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 like that powerful political voice of disabled people's also
been lost a little bit over the years. There are
(09:45):
still organizations of disabled people, but in terms of the
Equality Act, disability just ends up being a feel a
bit lost. I don't really know where we are, but
you know where we're still fighting for basic access to
get into a building, or to get into you know,
high court, you know, you know, just those things. We
(10:06):
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 you know, quite strong
disabled people, but it needs to be more disabled people
asking more things, because otherwise they look at me and
while I got it to her again and just ignored it.
So one of the things I tried to do is
really important. It's just get more disabled people to talk
(10:27):
about these things and to give them an opportunity and
support to be an alternate voice. What Canada Senate is
about to get a little bit fuller. The federal government
announcing the appointment of seven new people to the Red
Chamber in Canada in two thousand and sixteen, fourteen time
gold medalist Paralympian Chantell Petty Clerk also made the switch
(10:51):
from record breaker to lawmaker. Moving into politics as a
Canadian Senator was a bit of a strange moment because
I did not plan for it and uh and and
to me, I was exactly at that time, after being
Chef de mission for Rio, after coaching for London, to
(11:12):
to to choose you know what will this second part
of my life be. Do I want to stay in sport,
do I want to do something different? So, 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, but the
(11:35):
voice using her position of influencing government. Chantel has been
able to make a monumental impact on a very controversial
but life changing matter for disabled people, the assisted Dying Bills.
One of the very first impact that I had was
also one that was very um difficult in in intense
(11:55):
uh and it was only a few months after I
was a pointed in the Senate of Canada where we
had to deal with a very very important bill on
medical assistance in dying it was very of course, I mean,
you know, it is so delicate and so important and
(12:16):
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 interable pain who want to make their choice for themselves.
And so so I was a sponsor of that bill
(12:36):
and trying to be the voice of those individuals who
wanted to have the right to make that choice for them,
and of course, uh, it was very tough for me.
It was also a very tough conversation in Canada because,
as in many countries in the world, UH, persons with
disability still have a lot of vulnerability, which is strange
(13:01):
because when you're a paralympian, you're like this, champions of
persons with disability, and sometimes you have sponsors, you have visibility,
people recognize 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
(13:25):
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 strength, different vulnerability. But each and every one of
(13:48):
them and me should have uh the right to choose
how they want to live their life and and maybe
how they want to end it. In Parliament, Chantel used
her to advocate for all disabled people. But you don't
need to be a politician to change your world. The
mayor of Lima, Peru, is confronting disability challenges head on,
(14:13):
and earlier this week, he discovered just how challenging life
in a wheelchair can be when he nearly fell out
of his chair. Pilaja Reggie 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, so she challenged Lima's mayor,
(14:37):
Jorge Muns to try it for himself. I found it
difficult when going out shopping, going to the pharmacy, basically everything.
Many times I have run into palls and garbage cans,
things like that. Or I found that the rant was
too steep and difficult to go up and down, So
(14:57):
that is when I recorded a video and posted the
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
(15:21):
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 three thousand accessible ramps.
There are now regulated standards for how ramps should be
built and how there should be a ramp on every corner.
(15:44):
Thanks to the Games, there has also been an improvement
in the 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 you are more careful about that. Okay, so we've
(16:09):
heard how paralympians have made an impact on the law,
but what about disabled people who aren't Paralympians. I've faced
so much discrimination in the United States, racism, sexism, and
the worst able ism. Harbon Germer, who is deaf blind
has become one of the most prominent disabled activists in
(16:31):
the world. President Obama even recognized her work when he
named her a White House Champion of Change. So fed
up with ableism that I wanted to make a career
out of finding it, Harbon has used her position to
change the law. One of the things I was proud
of is to help increase reading access for blind readers.
(16:53):
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 use the Americans with Disabilities Act to compel them,
and after the lawsuit, they agreed to work with the
(17:15):
Natural Ofederation of the Blind to make their library accessible
for blind readers. Harbon shows us that activism works and
she's 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
(17:35):
impact their lives. In India, Mana see Joshi, a young
para badminton player, is campaigning to reduce the cost of
prosthetic limbs. Or in Nigeria, rassak Adaquia, who lost his
sight in a car accident as a young adult is
helping Nigerians get into employment. Others are more political. In Greece,
(17:56):
Stelius Kim poor Opolis began his career as a psychiatryist,
but in two thousand and nineteen became a member of
European Parliament working to help disabled people live independently. And
in another activist Eleanor Lalou became France's first counselor with
Down syndrome. Advocates are even making a difference at an
(18:16):
international scale. Daphne free Us is a Mexican American campaigner
with cerebral palsy who helps disabled people participate in climate action.
And Eugene Mustafa is a Kurdish Syrian refugee who in
two thousand and nineteen 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
(18:40):
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. Often we see disabled people
working in isolation, focusing on the issues that matter to
(19:01):
them in the countries where they live, and rightly so,
but it's time we joined together. You're such an inspiration,
so great you remind me for you break. Recently, a
global campaign called We the Fifteen has launched time to
(19:24):
coordinate with the Tokyo Games to raise awareness of the
fact that we remain the most underrepresented an undeserved group
on the planet. The International Paralympic Committee, the International Disability Alliance,
the United Nations and UNESCO have all come together to
amplify the cause because we all recognize that now is
(19:44):
the time to remove inequality and inactivity. We spoke with
one of the founders of the We the Fifteen campaign,
Eddie and Dopeu, who is an award winning, internationally acclaimed
activist and humanitarian from South Africa. One of the things
that Eddie is known for is his engagement with young
activists to pressure lawmakers around the world to provide improved
(20:07):
educational opportunities to use with disabilities. Eddie explains how he
goes about advocating for change. You know, Sophie, I think
at the end of the day, it is so critical
that we have an intersectional approach to to disability, right
that you know, of course, we know that we are
(20:29):
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 stripped down our complexity
in order to advocate for change in terms of legal
(20:50):
rights or legislation. And so the temptation to flatten the
disability experience in the name of advocating for recognition and
and and 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
(21:15):
profound recognition that we are never just one thing, right,
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 and that
is the magic of the lived experience of disability is
(21:38):
that it is we we are we, we are disabled,
and we are so many other things simultaneously, right, And
I think, you know what the movement, what what needs
to happen, I think is is that that texture to
our lives and now they've the experience. That's what needs
to be put at the forefront. Right. The questions that
(22:03):
Eddie asked need to be carefully considered. They need to
be asked of one another, and we need to think
about our answers. This subject requires us all to ask
questions of ourselves and our understanding of what disability, justice
and equality means. Eddie Tatiana Chantel are all disabled people
(22:24):
making change for disabled people, which is vital when it
comes to representing the many different lived experiences of disabled 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. So I was in Manhattan, downtown Manhattan, UM,
(22:49):
showing up at this you know, really fancy building for
a meeting. And I make my way to the entrance
of the building and I'm all dressed up, looking absolutely
fabulous with my channel glasses, and UM. I arrived at
the building and UM, the person at the door, the
(23:13):
keeper of the building, sort of looked at me and said, UM,
can I help you? And they said, no, I'm fine,
I'm just here for a meeting. UM. 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
(23:33):
not here to see a doctor, but you know he
he automatical. And and this was, you know, five minutes
before I had to be psychologically ready for you know,
a really important meeting. That's quite significant, right, And so
that was the moment where I was just like, oh wow, okay, Like,
you know, no matter no matter how successful I think
(23:55):
I am, no matter how UM accomplished that. And this
is the thing, Sophie, is that you know, success does
not inoculate us against able ism. And what about the
toll that this has on disabled activists? His hobbin again.
So the way a lot of these laws are structured,
(24:17):
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,
(24:39):
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 could
(25:01):
stop 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 Amery Goods of
(25:22):
Disabilities Act. The dog gets to travel with her and
the person gave in and let us write 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. So how do we
(25:48):
fight for our rights going forward? Do we need more
than the law? Laws 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 in.
So it's important to have last It's not the only tour.
(26:08):
It's a very important tour, but it goes along other
It goes alongside other tours such as stories and leadership
and having great examples and guides and how to do
the right thing. I spoke to leading disability activists, actress
Jamila Jamil and co producer of this podcast, said Burke,
(26:32):
to see what we feel is needed to galvanize people
to accelerate change. I mean, I think it begins with
non disabled people showing them 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.
(26:54):
But finally, huge corporations and the government and the police
even in some states where 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. But
I think it just means all of us together. And
(27:14):
as I said, I think a lot of people who
have now hopefully realized that disability can come into your
life at any time, and and it's time to show
up and and help prepare the world. And I think,
you know, amazing activists like Imani Barbarine and all these
different voices, both of you, so many different added Upton,
(27:34):
like there are so many voices out there who haven't
been given the platform that they deserve. We also need
stories in the media, film written stories, official stories, auditories,
stories that will reach communities and shape their definitions of
disability and interdependence. And there are organizations that are doing that,
(28:00):
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 able ism is English.
Let's get that word into other languages. Let's have disability
(28:24):
activists who speak those other languages natively come up with
their own terms for the word able is um so
it could be part of the culture and community and
strived for inclusion in order to make change. Therefore, we
need a holistic approach. I asked Eddie his opinion on
(28:44):
what we can learn from other movements who have achieved
what we are aiming for movements who are one step
closer to reaching equality. The success of other movements is
in you know, how they were able to leverage the
power of arts and pop culture as a way to
(29:04):
change hearts and minds and shift narratives and then build
on that for institutional legislative changes. Right like, I think
we've done at the other way around. Right, We started
with the Convention and the rights of persons with disabilities,
But we don't have a disabled actress who is an
(29:26):
Oscar winner and who's under cover of Vogue. 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
(29:46):
story is different, but they 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 overreliant on disabled activists to
make it happen. Too many of the laws that we've
been talking about, our laws, our activists have been responsible
(30:08):
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 to next time we
(30:29):
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. These podcasts have been
made possible because of the support of Procter and Gamble,
(30:50):
P and 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. Of people
with a direct involvement in the production of the podcast,
including guests identify as disabled. Hi, I'm Meg, and I
(31:11):
am disabled. I'm a wordy user with the brain injury.
I've been working on this podcast as a prosestion coordinator,
but I've also been given the opportunity to do a
bit of scripting and even being an interior a change.
I would love to see more production like this with
disabled people working behind the scenes as rather disabled people
(31:35):
on the mic. If you wanted further the story enjoying
the conversation, go to age Quiety dot World. 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 Chanaid Burke, Greg Nugent, Barnaby Spuria,
(32:00):
Laura i'ms Mark Pritchard and Kimberly Dobrunner. Thank you to
the I p C and Channel four 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
(32:21):
equal to story and join the conversation hashtag equal to,
go to our website ht Whitey dot 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.
There's a young boys was cut up from our surgery.
Prosthetic picts burgery telling me I'm normal, But normal would
they never really menacing? They are always painting discriminated what
the world around the world, there are laws that protect
disabled people from discriminations, but in this episode we'll be
talking about why some current legislations may not enable, empower, liberate,
(00:25):
or protect disabled people as much as they should. I'm
Sophie Morgan. This is equal to episode two, How we
change the law? What can we do to push equality
for for people with disabilities? In high school, the only
thing that we could do was was to see I
(00:50):
think it's about having you know, fairness of opportunity is
a really big part of it, and I do think
disabled people have to take some responsibility. Last camp being
taken in a way and it's it's permanent in for
the great reasons m oh your Market said, the persons
(01:32):
have beloved the blood to hit the g Today, over
one point to billion people around the world are living
with a disability. We make up fifteen percent of the
global population, and yet despite many countries establishing laws to
protect our rights, no disabled person is immune to discrimination.
Last year, across thirty six police forces in England and Wales,
(01:54):
more than seven thousand, three hundred disability hate crimes were reported,
but only one point six percent resulted in perpetrators being charged.
Disability discrimination, often called able is um, comes in many forms,
from not providing a wheelchair ramp or an interpreter and
a press briefing two point six millions spent on the
(02:15):
new press room, yet still no interpreter, 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 there's the a
d A. In Colombia there's Law sixteen eighteen, and in
(02:38):
Australia there's 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 cryp Camp to get an idea of how hard
fought the A d A was in the US. But
even when there are laws in place. When Ris searching
(03:00):
for this podcast, 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. Yes,
he goes again, going for the double in Even Paralympic
legends like usas Tatiana McFadden, who can currently be seen
on television screens all around the world as she competes
(03:23):
in Tokyo. Even Tatiana experiences discriminations. But mcfanna while she's
on the hunt for six golds now and that's the
first of all. Growing up in the US, Tatiana began
wheelchair racing at the age of eight. At fifteen, she
competed in her first Paralympics in Athens in two thousand
(03:43):
and four, bringing home to gold medals. But when she
returned home to Illinois and started high school, Tatiana found
even Paralympic champions would not be treated equally to non
disabled high schoolers coming in into high school. I'll I'm
one end to to do track. That's the that's a
club that I wanted to do. Her school said she
(04:05):
was not allowed to participate in high school sports due
to her wheelchair being a safety hazard and creating an
unfair advantage. I didn't want to do anything else that
I didn't want to do Chazz. I didn't want to
do be in the theater. I just wanted to do
high school track. And my my first year, um, you know,
(04:29):
I didn't think how how tough it was going to be.
And I I was denied a uniform, and I was
denied to run alongside of of the of the able
bodied runners. And so I thought, you know what, what
(04:51):
can we do to push equality for for people a
disabilities in high school? And the only thing that we
could do was 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 worked with
(05:15):
Tatiana's lawsuit, which requires schools to provide equal opportunities for
students with disabilities, was passed in two thousand and eight.
It is now known as Tatiana's Law. Thinking about going
through that lawsuit, and I thought of my sister Hannah immediately.
She was also a Paralympic athlete, and I wanted and
(05:36):
wanted her to have the best experience possible. And people
following after that, and now that it's it's federal and
it's nationwide, you know, it's it's called the Tatiana's Law,
and it's it's so cool going going through that as
a high schooler and it was extremely hard, and yeah
(06:01):
it was it was really tough. Um, but it last
camp being taken away and it's it's permanent in for
the right reason. So what does this story teach us?
It may have resulted in a positive and a lasting outcome,
but isn't it shocking to think that equality of opportunity
in sport may not have been possible for disabled children
(06:23):
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? The U n c
(06:44):
RPD talks about how countries should make sure that people
with disabilities have the same rights as others. In two
thousand and six, the United Nations adopted an international treaty
to protect the rights of people with disabilities. It's called
the Convention on the Right of People with Disabilities or
the crp D. Its goal is to wipe out all
(07:05):
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
(07:29):
member of Athletics for All oh and she's also Tatiana's mom.
Here she explains why the crp D matters. So it's
very important that the U N ratifies the Convention on
the Rights of People with Disabilities. We are a blessed
country to have so many wonderful laws, such as the
Americans with Disability Zack Tribal four two idea. But what
(07:55):
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.
(08:16):
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, and the US isn't alone.
There are many other countries yet to ratify the convention.
(08:39):
In a later episode, will be asking whether the l
A Paralympic Games might be the tipping point that encourages
the US to take that step, and if so, what
that might mean. Disabled people's organizations around the world agree
that in order for change to be made, we need
strong leadership with disabled people themselves is leading the charge.
(09:01):
Nothing about us without us, as they say. In the
first episode, we spoke with former British paralympian damed Tanny
gray Thompson, and here she is again explaining why she
got into politics. I think it's about having you know,
fairness of opportunity is a really big part of it,
and I do think disabled people have to take some responsibility.
(09:23):
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 had this set
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 like that powerful political voice of disabled people's also
been lost a little bit over the years. There are
(09:45):
still organizations of disabled people, but in terms of the
Equality Act, disability just ends up being a feel a
bit lost. I don't really know where we are, but
you know where we're still fighting for basic access to
get into a building, or to get into you know,
high court, you know, you know, just those things. We
(10:06):
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 you know, quite strong
disabled people, but it needs to be more disabled people
asking more things, because otherwise they look at me and
while I got it to her again and just ignored it.
So one of the things I tried to do is
really important. It's just get more disabled people to talk
(10:27):
about these things and to give them an opportunity and
support to be an alternate voice. What Canada Senate is
about to get a little bit fuller. The federal government
announcing the appointment of seven new people to the Red
Chamber in Canada in two thousand and sixteen, fourteen time
gold medalist Paralympian Chantell Petty Clerk also made the switch
(10:51):
from record breaker to lawmaker. Moving into politics as a
Canadian Senator was a bit of a strange moment because
I did not plan for it and uh and and
to me, I was exactly at that time, after being
Chef de mission for Rio, after coaching for London, to
(11:12):
to to choose you know what will this second part
of my life be. Do I want to stay in sport,
do I want to do something different? So, 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, but the
(11:35):
voice using her position of influencing government. Chantel has been
able to make a monumental impact on a very controversial
but life changing matter for disabled people, the assisted Dying Bills.
One of the very first impact that I had was
also one that was very um difficult in in intense
(11:55):
uh and it was only a few months after I
was a pointed in the Senate of Canada where we
had to deal with a very very important bill on
medical assistance in dying it was very of course, I mean,
you know, it is so delicate and so important and
(12:16):
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 interable pain who want to make their choice for themselves.
And so so I was a sponsor of that bill
(12:36):
and trying to be the voice of those individuals who
wanted to have the right to make that choice for them,
and of course, uh, it was very tough for me.
It was also a very tough conversation in Canada because,
as in many countries in the world, UH, persons with
disability still have a lot of vulnerability, which is strange
(13:01):
because when you're a paralympian, you're like this, champions of
persons with disability, and sometimes you have sponsors, you have visibility,
people recognize 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
(13:25):
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 strength, different vulnerability. But each and every one of
(13:48):
them and me should have uh the right to choose
how they want to live their life and and maybe
how they want to end it. In Parliament, Chantel used
her to advocate for all disabled people. But you don't
need to be a politician to change your world. The
mayor of Lima, Peru, is confronting disability challenges head on,
(14:13):
and earlier this week, he discovered just how challenging life
in a wheelchair can be when he nearly fell out
of his chair. Pilaja Reggie 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, so she challenged Lima's mayor,
(14:37):
Jorge Muns to try it for himself. I found it
difficult when going out shopping, going to the pharmacy, basically everything.
Many times I have run into palls and garbage cans,
things like that. Or I found that the rant was
too steep and difficult to go up and down, So
(14:57):
that is when I recorded a video and posted the
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
(15:21):
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 three thousand accessible ramps.
There are now regulated standards for how ramps should be
built and how there should be a ramp on every corner.
(15:44):
Thanks to the Games, there has also been an improvement
in the 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 you are more careful about that. Okay, so we've
(16:09):
heard how paralympians have made an impact on the law,
but what about disabled people who aren't Paralympians. I've faced
so much discrimination in the United States, racism, sexism, and
the worst able ism. Harbon Germer, who is deaf blind
has become one of the most prominent disabled activists in
(16:31):
the world. President Obama even recognized her work when he
named her a White House Champion of Change. So fed
up with ableism that I wanted to make a career
out of finding it, Harbon has used her position to
change the law. One of the things I was proud
of is to help increase reading access for blind readers.
(16:53):
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 use the Americans with Disabilities Act to compel them,
and after the lawsuit, they agreed to work with the
(17:15):
Natural Ofederation of the Blind to make their library accessible
for blind readers. Harbon shows us that activism works and
she's 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
(17:35):
impact their lives. In India, Mana see Joshi, a young
para badminton player, is campaigning to reduce the cost of
prosthetic limbs. Or in Nigeria, rassak Adaquia, who lost his
sight in a car accident as a young adult is
helping Nigerians get into employment. Others are more political. In Greece,
(17:56):
Stelius Kim poor Opolis began his career as a psychiatryist,
but in two thousand and nineteen became a member of
European Parliament working to help disabled people live independently. And
in another activist Eleanor Lalou became France's first counselor with
Down syndrome. Advocates are even making a difference at an
(18:16):
international scale. Daphne free Us is a Mexican American campaigner
with cerebral palsy who helps disabled people participate in climate action.
And Eugene Mustafa is a Kurdish Syrian refugee who in
two thousand and nineteen 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
(18:40):
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. Often we see disabled people
working in isolation, focusing on the issues that matter to
(19:01):
them in the countries where they live, and rightly so,
but it's time we joined together. You're such an inspiration,
so great you remind me for you break. Recently, a
global campaign called We the Fifteen has launched time to
(19:24):
coordinate with the Tokyo Games to raise awareness of the
fact that we remain the most underrepresented an undeserved group
on the planet. The International Paralympic Committee, the International Disability Alliance,
the United Nations and UNESCO have all come together to
amplify the cause because we all recognize that now is
(19:44):
the time to remove inequality and inactivity. We spoke with
one of the founders of the We the Fifteen campaign,
Eddie and Dopeu, who is an award winning, internationally acclaimed
activist and humanitarian from South Africa. One of the things
that Eddie is known for is his engagement with young
activists to pressure lawmakers around the world to provide improved
(20:07):
educational opportunities to use with disabilities. Eddie explains how he
goes about advocating for change. You know, Sophie, I think
at the end of the day, it is so critical
that we have an intersectional approach to to disability, right
that you know, of course, we know that we are
(20:29):
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 stripped down our complexity
in order to advocate for change in terms of legal
(20:50):
rights or legislation. And so the temptation to flatten the
disability experience in the name of advocating for recognition and
and and 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
(21:15):
profound recognition that we are never just one thing, right,
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 and that
is the magic of the lived experience of disability is
(21:38):
that it is we we are we, we are disabled,
and we are so many other things simultaneously, right, And
I think, you know what the movement, what what needs
to happen, I think is is that that texture to
our lives and now they've the experience. That's what needs
to be put at the forefront. Right. The questions that
(22:03):
Eddie asked need to be carefully considered. They need to
be asked of one another, and we need to think
about our answers. This subject requires us all to ask
questions of ourselves and our understanding of what disability, justice
and equality means. Eddie Tatiana Chantel are all disabled people
(22:24):
making change for disabled people, which is vital when it
comes to representing the many different lived experiences of disabled 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. So I was in Manhattan, downtown Manhattan, UM,
(22:49):
showing up at this you know, really fancy building for
a meeting. And I make my way to the entrance
of the building and I'm all dressed up, looking absolutely
fabulous with my channel glasses, and UM. I arrived at
the building and UM, the person at the door, the
(23:13):
keeper of the building, sort of looked at me and said, UM,
can I help you? And they said, no, I'm fine,
I'm just here for a meeting. UM. 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
(23:33):
not here to see a doctor, but you know he
he automatical. And and this was, you know, five minutes
before I had to be psychologically ready for you know,
a really important meeting. That's quite significant, right, And so
that was the moment where I was just like, oh wow, okay, Like,
you know, no matter no matter how successful I think
(23:55):
I am, no matter how UM accomplished that. And this
is the thing, Sophie, is that you know, success does
not inoculate us against able ism. And what about the
toll that this has on disabled activists? His hobbin again.
So the way a lot of these laws are structured,
(24:17):
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,
(24:39):
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 could
(25:01):
stop 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 Amery Goods of
(25:22):
Disabilities Act. The dog gets to travel with her and
the person gave in and let us write 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. So how do we
(25:48):
fight for our rights going forward? Do we need more
than the law? Laws 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 in.
So it's important to have last It's not the only tour.
(26:08):
It's a very important tour, but it goes along other
It goes alongside other tours such as stories and leadership
and having great examples and guides and how to do
the right thing. I spoke to leading disability activists, actress
Jamila Jamil and co producer of this podcast, said Burke,
(26:32):
to see what we feel is needed to galvanize people
to accelerate change. I mean, I think it begins with
non disabled people showing them 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.
(26:54):
But finally, huge corporations and the government and the police
even in some states where 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. But
I think it just means all of us together. And
(27:14):
as I said, I think a lot of people who
have now hopefully realized that disability can come into your
life at any time, and and it's time to show
up and and help prepare the world. And I think,
you know, amazing activists like Imani Barbarine and all these
different voices, both of you, so many different added Upton,
(27:34):
like there are so many voices out there who haven't
been given the platform that they deserve. We also need
stories in the media, film written stories, official stories, auditories,
stories that will reach communities and shape their definitions of
disability and interdependence. And there are organizations that are doing that,
(28:00):
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 able ism is English.
Let's get that word into other languages. Let's have disability
(28:24):
activists who speak those other languages natively come up with
their own terms for the word able is um so
it could be part of the culture and community and
strived for inclusion in order to make change. Therefore, we
need a holistic approach. I asked Eddie his opinion on
(28:44):
what we can learn from other movements who have achieved
what we are aiming for movements who are one step
closer to reaching equality. The success of other movements is
in you know, how they were able to leverage the
power of arts and pop culture as a way to
(29:04):
change hearts and minds and shift narratives and then build
on that for institutional legislative changes. Right like, I think
we've done at the other way around. Right, We started
with the Convention and the rights of persons with disabilities,
But we don't have a disabled actress who is an
(29:26):
Oscar winner and who's under cover of Vogue. 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
(29:46):
story is different, but they 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 overreliant on disabled activists to
make it happen. Too many of the laws that we've
been talking about, our laws, our activists have been responsible
(30:08):
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 to next time we
(30:29):
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. These podcasts have been
made possible because of the support of Procter and Gamble,
(30:50):
P and 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. Of people
with a direct involvement in the production of the podcast,
including guests identify as disabled. Hi, I'm Meg, and I
(31:11):
am disabled. I'm a wordy user with the brain injury.
I've been working on this podcast as a prosestion coordinator,
but I've also been given the opportunity to do a
bit of scripting and even being an interior a change.
I would love to see more production like this with
disabled people working behind the scenes as rather disabled people
(31:35):
on the mic. If you wanted further the story enjoying
the conversation, go to age Quiety dot World. 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 Chanaid Burke, Greg Nugent, Barnaby Spuria,
(32:00):
Laura i'ms Mark Pritchard and Kimberly Dobrunner. Thank you to
the I p C and Channel four 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
(32:21):
equal to story and join the conversation hashtag equal to,
go to our website ht Whitey dot 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.
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