Disability

Transcript: Turning to snow to meet my mother

This is a full transcript of Turning to snow to meet my mother as first broadcast on 11 May presented by Beth Rose with Tatyana and Deborah McFadden.

BETH - Hi, it's Beth Rose here from the BBC Ouch team with part two of the Tatyana McFadden story and boy is it just as dramatic as the last episode which ended on such a cliff-hanger.

So, to recap: Tatyana lives in America. She has spina bifida, which is a deformity of the spine, and she's won 17 Paralympic medals for wheelchair racing. But her life hasn't always been about medals and ice cream. She was left in a Russian orphanage until the age of six, when she was adopted by a US dignitary who herself had previously been paralysed from the neck down herself. Tatyana went on to become the youngest member of Team USA at the 2004 Paralympics when she was just 15, but that isn't where the astonishing story ends.

When she returned from those paralympics with her silver and bronze medals all she wanted to do was join her school's track and field team. But they said 'no'.

There were issues with health and safety and having a wheelchair on a running track. The McFaddens couldn't believe it, and didn't take it lying down. In fact, the topic turned into national news as they went to court. But it started with just two demands.

DEBORAH - And so again I went back saying, give her a uniform and let her run around the track. And they said no. And I said, I want you to know that if you say no to those two things I will file a lawsuit and I will win. And they kind of laughed. I said, let me tell you my background: I was Commissioner of Disabilities, which I think in your country is Deputy Minister; I was one of the people who helped with the writing of the American Disabilities Act. I had 400 attorneys who worked under me and I know everybody. So, it'll be nuclear war. [Laughs] I'm just telling you, give her a uniform and let her run around the track. And they said, sue us.

So, we filed a lawsuit in our county, but I filed for no damages, no money. And so when the media came and said, how much are you suing for, and I said nothing they're like, well why are you suing. I said for opportunity because it's the right thing.

And we did win in our county, hands down, it was not even a question. But then the state said, fine, she can run in your county but not in the state. I said, I'll file a suit and we'll win. We did file a suit and it started getting national news. And then Tatyana says, you know let's just make a law and make it easier. I said, you're killing me Tatyana, this is a lot of work. And laws take a long time, but we wrote a law, we got the support of a number of organisations, and Tatyana's just 15 and she goes around to these elected officials and basically said, how would you like it if your son or daughter had friends who wanted to be with them and they wouldn't let them play.

In one year the first law in America passed as Sports and Fitness Equity Act, aka Tatyana's Law, and it said: if you have a disability you have the right to participate in sports in school. And then she said, let's make it federal. So, I got Tatyana and my other daughter, Hannah, to speak to President Obama, and about seven years ago it became federal. And every child in America who has a disability has their right to participate in sports, and it's because Tatyana took it on.

BETH - And what was it like for you on an emotional side and your team mates, did it cause some tensions at school and then beyond?

TATYANA - It was really difficult. It definitely caused a lot of tension. I found out really fast who my friends were and who my friends weren't. I had a lot of people that did not understand what I was doing, and so every track meet that I went to they were always booing. But I just knew on the inside that this was the right thing to do and so just kind of stayed pretty low and pretty quiet.

I had team mates that wrote into the Baltimore Sun expressing how angry they were that this was happening and that it wasn't fair and that I had clubs for my own kind. But those people they don't understand the bigger picture. Now that it's federal law that's something that I'm so super proud of and that's something that can never be taken away. What you were teaching at high school at the time that it was okay to discriminate people because they were different, and that was okay for me. They might employ someone with a disability but they might turn them away because it's okay to - that's what they were taught in high school.

We had a girl in a wheelchair and she wasn't allowed to run on the track and that was okay - and that's something that is not okay. So, it's hard as a high schooler to really understand that for the bigger picture. But maybe I was ahead of my time.

But it's something that I was definitely willing to fight for, not just for me and my sister, but everyone who comes behind me I wanted them to have a, quote unquote, normal high school experience and to enjoy it.

DEBORAH - It was a paradigm shift and she changed the landscape forever. And now her school is very proud of her, and they often write on her social media, we're proud of you.

But it was back in a time, I think like women, when women wanted to compete, in past years women couldn't compete in marathons, they couldn't compete in certain club sports. But that changed with our Title 1X that women had the right play, and so this is equivalent to the Title 1X law: everyone has the right to compete in sports.

BETH - And have you seen a dramatic change in the number of young people, or older people as well, getting involved in sport?

TATYANA - Definitely. I've definitely seen everywhere definitely more high schoolers joining high school sports with physical disabilities, which is excellent. I've seen the shift in the Paralympics, I've seen the shift in marathons - and it all just takes time - but I've seen a positive shift from when I started to now. And there's still a lot of work that needs to be done but at least it's heading in the right direction.

BETH - And also not only did you have political background and understanding but you also had a bit more of an insight into what challenges you might face as a disabled person. You had, I'm going to try and pronounce it, Guillain-Barré syndrome.

DEBORAH - Oh my goodness, you're the first person who is able to pronounce that.

BETH - Thank you very much! [Laughter] So, what is it?

DEBORAH - Guillain-Barré, its nickname is French polio, and I was in graduate school and I used to fence competitively and was very active, I started feeling poorly and I was tired. What I didn't realise was that I at first had lost all feeling in my body. People kept saying, what hurts, and I said, nothing hurts, I'm just tired. And for Guillain-Barré what it does it start at your feet, toes, and it works its way up and they can't stop it. When I had it they didn't know what it was. Now they're doing plasmapheresis and some things to help stop it.

BETH - So, is it like loss of sensation?

DEBORAH - Well, it's loss of sensation and no movement.

BETH - Right okay!

DEBORAH - It went all the way up and in fact I couldn't move my arms. I had to be fed and dressed. It was pretty dramatic. And in graduate student I was not only a straight A student, I was top of my class, and this happened in April. So, in the summer when I was at the hospital they called my parents and said, she may die, you'd better get here; if she doesn't die she'll never walk. So, I was in an electric chair for four years and crutches for another eight. It took me 12 years to learn to walk again.

What I realised is, I said to my parents, I have to go back to school because the only thing I can do is talk. And people treated me differently. And I thought you have seen me for one year being an A student, top of my class, and now - okay I drooled, I needed help doing things - but now you speak louder to me, you treat me like I'm an idiot. Why would you do this after knowing me for a year at least in grad school. And as Tatyana said, you know who your friends are; there were people that stayed with me that surprised me, and I was also surprised at those who just couldn't handle it.

And then I learned when I graduated that employment was tough, so I witnessed first-hand discrimination based on what a book looks like, and so I was very active politically to change the system. And certainly when I adopted my children I expected that there would be much discrimination because I had seen the worst.

I do remember in elementary school they didn't want her to play in the playground and I went in one day to the principal and said, I have a letter for you. She said, what's it about. I said, it's a get out of jail free card. She said, what do you mean. I said, Tatyana has the right to play on the jungle gyms and break her collarbone just like everybody else; if she breaks a bone I will not hold you responsible. If you don't let her do it we're going to have a legal issue because you have to give her the same rights.

Tatyana has been a role model for many because she has so much ability. At that time she just was more yes, I'm going to do it; but she's helped pave the way and together we've tried to change things and now life is different.

BETH - And amongst all this happening and Tatyana racing for the USA and everything, as you mentioned you've got other children, you adopted - I mean, this is unbelievable if it's not an incredible story already - but you adopted your second daughter Hannah from Albania, and she is now also a Paralympian.

DEBORAH - She's ranked in the US and I think fourth and seventh in the world.

BETH - You must have some natural talent in choosing [inaudible 08:18] people.

DEBORAH - Clearly it's my cooking! But what I saw in them was their spunk. I look at one of my neighbour's kids they can't get off their butt. And they have everything; they can't take the garbage can in, they can't help out around the home. And they look at me and say, oh you're so kind to adopt these kids with disabilities. And I'm thinking, I feel sorry for you because you have spoilt children, and my kids are not spoilt, they appreciate things. I know at Christmas time when I say, what would you like, they go, we're very happy with everything. They don't want for anything. And yet they push things. They don't complain. I'm thinking Tatyana, it's snowing, get out and shovel, and Hannah get out and shovel. My next daughter, Ruthie, who was adopted at nine does not have a disability but she's very tall, much taller than me.

BETH - And not a sports person either.

DEBORAH - She's not a sports person. She likes more the arts.

BETH - Good to have a balance.

DEBORAH - Yes.

BETH - You're massively well-known in the sports world, and one of your greatest years was 2013 I believe. Tell me a bit about what's so significant about 2013?

TATYANA - Well, 2013, '14, '15 and even '16 I won all the major marathons right in a row, and no athlete has ever done that to win 17 major marathons all right in a row. And that was one of the greatest accomplishments. I started out with Boston and just continued all the way through. And then had a little bump in the road last year with blood clots so that kind of put me on a slight pause, but now everything is good.

But I love the sport and the doctors knew how much I love racing and I love marathoning and so they understand my goal and they really helped me get back on track.

DEBORAH - Tatyana is extraordinarily humble. In fact I think when she won four gold medals and two silvers at one of the Games someone asked her how you did, and she said I did well. So, I think what you're asking is in '13 nobody, man or woman in any category, with legs or with racing chair, has ever won a grand slam in marathons. A grand slam is four world major marathons, and Tatyana won London, Boston, Chicago and New York in '13 and that's never, ever happened. So, she was cheered and went down in the history books for that.

And then the comment was, well someday someone will break that. Well, in '14 she did the grand slam again, and she did it in '15 and did it in '16, so I'm thinking four years in row may be a record that lasts!

BETH - And also you got the world championship medals for every distance?

TATYANA - Yes.

BETH - So, from 100m all the way up?

TATYANA - All the way to the 5,000.

BETH - Which is astonishing!

TATYANA - Thank you, thank you. Yeah, that was a really good year. Always working towards new goals; I hope to do all the events again in the future, especially for Tokyo 2020, to do the Seven Wonders. We will see.

BETH - And you took a bit of a sidestep in 2014.

TATYANA - Sochi.

BETH - You switched up the sports and turned to the snow and went to Sochi as a sit skier. Tell me a bit about why you wanted to do that.

TATYANA - So, the Sochi Paralympic Games was definitely a special Games for me. When I found out that the Games were going to be in Russia I was so excited, I was absolutely thrilled, so I went to go and talk to my mum and I said, do you know where the next Games are going to be. And she said, yes, it's going to be Winter Games. I said, it's going to be really, really exciting, and she said, but you don't do a winter sport. And I remember telling her, well I could do a winter sport. And cross country skiing was it; it takes a lot of endurance and a lot of strength and technique. I had two out of the three so I thought why not, this will be the coolest to go back to Russia and to, it was always a dream of mine to have my birth family and my adoptive family at one competition, so I thought why not, dreams are never too big.

It was one of the hardest challenges I've ever had in my entire life. I started in a sport I had no clue what I was doing, and I was definitely always last place; you had to literally turn the page to see my results. It was really challenging and it was really, really difficult, and it came to a point where I didn't think I was going to make the team because I just wasn't even in the top ten. It was really hard mentally and physically, really emotional thinking I might not make this team. I gave it all that I'd got, and I thought my dream was going to be let go. And during the last World Cup I did really well. I made it to the finals in the sprint and that kind of helped me secure my spot on the team.

It was challenging because I came from a sport where I was always in the top three or even in the top five and people knew who I was in the Summer Games. And in crossing over I had people make comments like, you should just go back to your summer sport; why are you even here trying. And that kind of got me really motivated when they said that. I knew the ultimate goal: to have my family there, my birth family there and my adoptive family there at one competition. That's what it was about: making that team and making that possible. And getting a silver was just the cherry on top in cross country sprint.

BETH - So, had you kept in touch with your biological mother throughout, or was going to Sochi the sort of spark that you managed to track her down? And how did you track her down?

TATYANA - We actually met in 2011 right before the London 2012 Games. I think my mum's amazing. Background, she had her own adoption agency as well, non-profit one, that has placed over 2,000 children, and so I was really fortunate to be able to find my birth family and my birth mum.

Going back for the first time you don't know what's going to happen, so I was almost like emotionless; I didn't really expect anything high in case she didn't want to meet me or I didn't want to. Anything could happen. Yeah, then we just casually had been in touch through emails.

She had to do the hardest part, was to give up a child in the hope of a better life. That would be stressful. Me even thinking about that, how she was so strong to do that, because she hoped that I would have a better life. And I have a great life, living a dream almost, and so I'm so grateful for her.

So, when I went back I actually gave one of my World Championship medals to the orphanage director and said thank you. Having me back to the orphanage, she said that no one came back to visit, let alone a person with a disability, and so I think that changed the complete mindset of the orphanage, and in Russia specifically that people with physical disabilities can live a normal life, they can do anything they want to do and dream big and go to school and drive cars and participate in sports. So, that was the message that I gave when I went back in 2011, and when I skied in 2014.

BETH - What was the reaction of your birth mother to find not only out about her daughter also everything you had accomplished?

TATYANA - I think she was overwhelmed and kind of relieved too. I think she lived probably a really stressful life not knowing how I was, and I think for her it was a relief that she did the right thing. I think she was also happy that I'm living an amazing life and having all of these wonderful possibilities.

BETH - And you're still in touch now?

TATYANA - Casually through email.

BETH - Is it in Russia?

TATYANA - Yeah, I Google translate.

BETH - Classic. How is disability seen or disability sporting seen in America now? Do you feel like things have moved on?

TATYANA - I think it's getting better. I think that having the London Paralympic Games here in 2012 really set the stage of what sport should be and making that very equal, so I think that's really helped on the Paralympic side, especially for sponsorships and trying to make that equal. We're still far behind but it is getting a lot better.

I've seen a growth in marathons as well from when I started to now, and it's that education process; we're still very much behind in equal payment and even the media. We have gotten more media than when I started, but I guess I'm being greedy for the sport in general but I think we should always have more media. For marathons I think the coverage is getting better and making that parallel is getting better, so I'm really excited to see what Tokyo 2020 would show and how the Games are going to be. But I think they will make it more parallel, like the London Games, and really doing their research and trying to parallel everything.

And social media definitely helps in reaching athletes' stories and what sport is in general, so I think it's gotten much better but we still have far a ways to go.

BETH - I just came back from Tokyo a couple of weeks ago and they've got huge posters for the Paralympics.

TATYANA - Yeah.

BETH - They've got their own ones for the Olympics and they've got the Paralympic ones and there's just as many, so it's really exciting.

TATYANA - Yes.

BETH - But you do loads of stuff beyond sport. Tell me a bit about what else you're up to.

TATYANA - Well, recently I've been part of the Toyota Mobility Unlimited challenge, and what's amazing about this challenge is that we are creating a device for a person with a lower limb paralysis to live a normal and better life. What is great about this project is that we are looking for anyone, anyone in corporate businesses from someone working in their basement, but just creating a device that is easier for people with lower limb paralysis to live a better life.

BETH - What sorts of things would you like to see having experience being in wheelchairs and the challenges that can bring?

TATYANA - So, personally I put out a video of what I want to see, using the hashtag #mymobilityunlimited. And what I said was that I travel a lot and I wanted to see a little aisle chair that I can just put in my backpack that weighs about a pound or less and I can just whip it out and get to my seat and then put it right underneath my seat and be able to get on and off the plane independently.

I've missed flight connections because I've had to wait on the aisle chair people, and that's a big problem whether you're going for an important speech or events, it should not happen. We should all have a way where we can be independent. And that is what this project is for.

BETH - It's such an incredible story and it was so exciting to speak to Tatyana and Deborah. We always love to hear from you so let us know what you think. You can find us on Facebook, we are just BBC Ouch, on Twitter we're @bbcouch, and we're also on Instagram, BBC_ouch_disability. And of course there's always the email address ouch@bbc.co.uk. I'm Beth Rose and I'll speak to you soon.

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