April 14, 2021

Tamara Leonelli (Chile): Spina Bifida & True Inclusion Through Olympic & Paralympic Melding

Tamara Leonelli (Chile): Spina Bifida & True Inclusion Through Olympic & Paralympic Melding

Tamara (Tami) was introduced to table tennis in a rehabilitation center: Tami was born with spina bifida and had a life expectancy of 18. She is now 23 years old, the first Chilean table tennis player to win gold at the Parapan American Games, and on her way to Tokyo. Tamara's ability to reach and connect with a wide range of people is almost as impressive as her constantly changing colored hair (most recently red, and purple before), and she's leveraged those skills to become an outspoken advocate for members of the disabled community. In this episode, Tamara discusses player discusses her experience with spina bifida and her dreams for the future.

Featured contributing experts in order of appearance include Paola Leonelli (mother), Judy Thibadeau (Director of Research and Services, Spina Bifida Association), and Ricardo Elizalde (President of the Chilean Paralympic Committee). English voice overs: Michele Mittelman, Melissa Mittelman and Kyle Harrold.

Audio clips from Team USA's Opening Ceremony, 2019 Parapan American Games YouTube page.

Transcript

Paola: I am so proud of my daughter's desire to live, of how she was able to cope with a disability and not live in a disabled manner. Fight and get ahead.

Tamara: I believe that champions are born out of crises so I think it is a critical moment for everyone but that we can draw great lessons from this moment.

Jamie: Welcome to Flame Bearers: The women athletes carrying Tokyo's torch. I'm your host, Jamie. In this episode, Tamara Leonelli of the Chilean Table Tennis Team discusses her experience with spina bifida and her dreams for the future. We conducted the majority of this episodes' interviews in Spanish, and then with the help of Hayek Serrato translated this episode into English for our English listener base. If you'd prefer to listen in Spanish, next week we'll be releasing our full Spanish version.

Tamara: I'm Tamara Isabel Leonelli and I play Paralympic table tennis.

Jamie: Tami is from Temuco, Chile and has been playing table tennis for the past seven years. She loves the sport because of its simplicity. It's just her, the ball and her paddle.

Tamara: Team sports take a lot more unified coordination across many people. So I think it's very complex to get everyone to come together and to have a common goal or a common desire to achieve that. I really like table tennis because it's an individual sport.

Jamie: Tami experimented with other sports when she was younger. She's always been drawn to super competitive activities, but it wasn't until she was about 16 that she got into table tennis. And it obviously stuck with her. Tami's mom, Paola shares more.

Paola: Ever since Tamara was a little girl, she always wanted to do sports. She was bad at them, but was determined and was so stubborn. She did a lot of athletics and then she really liked table tennis.

Jamie: Tami was the first Chilean in table tennis player to win gold at the Parapan American Games and is the first Chilean female table tennis player to qualify for the Tokyo Paralympics.

Media Clip: More than 1,800 para athletes will show their strength and courage in a sport event that gathers 30 countries competing in 17 sports and 18 disciplines. The 2019 Parapan American Games are set to become the biggest in history.

Jamie: I asked her to describe what it felt like to win the Parapan Games.

Tamara: That was the most beautiful moment in my life. We waited and worked hard for that medal in Lima, and it was actually our only chance to qualify for Tokyo by ranking. It was almost impossible. So when I won the medal in Lima, it was incredible.

Jamie: Tami's road to Tokyo hasn't been the easiest, but once she discovered the sport, she put in an incredible amount of dedication into her training. She actually fell in love with table tennis at a rehabilitation center.

Tamara: I was born with spina bifida and for the past 16 years, I've been a patient at Teleton Temuco, a rehabilitation center for children and young adults. So in reality, I've been there all my life. And to this day, I'm still a patient. I was always playing sports in my rehabilitation there and then they introduced me to high-performance and competitive sports. But my life without sports was actually quite boring.

Jamie: I had heard of spina bifida before and knew some of the generalizations about the condition, but I really wanted to know more and better understand how it affects those born with it. So I sat down with Judy Thibadeau, director of research and services of the Spinal Bifida Association. The organization's mission is to build a better and brighter future for all those impacted by spinal bifida, through research, education and support, clinical care network building and advocacy.

Judy Thibadeau: So spinal bifida is a birth defect. It's the most common birth defect compatible with life. It occurs in about 3,000 births worldwide a year. Children with spinal bifida have mobility impairments, bowel and bladder problems, learning problems. People call spinal bifida snowflake condition because nobody's the same. Even your disability as spinal bifida and it might be a certain level on your spine, but you still are not the same truly.

Jamie: I was curious if research had shown specific factors that seem to cause spina bifida. It turns out that it's not so simple. There's not one answer.

Judy Thibadeau: It's multifactorial; environment, genetics, diet, some drugs like epilepsy drugs, and we're learning more and more, but it's not one thing. If you have a child with spina bifida or have close relations with a child with spina bifida, you're much more likely to have a child affected by spinal bifida. However, we see plenty of women with spinal bifida who are having babies who are not affected so it's not a for sure. It's just likely that it could happen.

Jamie: Nowadays, when a woman is pregnant, spina bifida can be detected through testing between 15 and 22 weeks of pregnancy. But when Tami's mom was pregnant with her, this wasn't even an option. She didn't learn that Tami had spinal bifida until she was born.

Paola: They were doing a caesarian section for me and there they realized what was happening, what was happening with Tamara. I had no idea what they were talking about. They told me, "Your daughter comes with spina bifida." And, "What's spina bifida?" I never heard of this concept. I thought my daughter was going to die. And growing up also, they gave the diagnosis that she will be living a maximum 18 of age and you live day to day, year after year.

Paola: I always celebrated her wonderful birthday with all of her friends, everything she wanted, everything, everything she did, as you could. True internally, it was terrible to do that because it was another year potentially gone for her.

Jamie: Tami has lived past the anticipated 18 years of age. She's now 23 and thriving as one of the world's best table tennis players. Her mom, Paola is clearly extremely proud of her. I asked her to share one of her favorite memories of her daughter.

Paola: I think the first great memory was when she started moving her legs. I saw that she moved a few toes and I began to call everyone to come over because I did not know if I had seen it or if I was dreaming. I am so proud of my daughter's desire to live, how she was able to cope with this disability and not live in a disabled manner. Because they are her tools. They were her desire to live life and that is a great experience. She teaches all of us, her family, friends, and we're proud of Tamara. That strength she has to get ahead.

Jamie: Despite living eight hours away from her family, Tami maintains close connection with her mom. They talk every day and sometimes multiple times a day through video calls. Because of the COVID-19 pandemic, Tami hasn't been able to travel home for six months, but their relationship continues to be a source of strength for them both.

Tamara: It's an inexplicable love. My mom has done everything for me. I mean, she's the one I watch out for day and night. I want the best for her. I want her to be well and she also wants the best for me.

Jamie: Tami has accomplished more in her 23 years than many do in 80. And in some ways her journey is just getting started. In addition to her dedication to competitive table tennis, she's also studying to become a teacher. So she juggles academics with her full-time training schedule.

Tamara: I always wanted to study pedagogy. I really liked teaching. I think it's a very nice way to do everything in life. You never stop learning so it's wonderful.

Jamie: She sees her accomplishments as just part of her normal everyday life. And she certainly has a ton to be proud of. Even though spina bifida is something she's lived with her entire life, it didn't really hit her until her early teen years when she really began to question how it impacted her day to day.

Tamara: They always talk to me about what I had, but I think it wasn't until I was 12 or 13 years old that I really understood and said, "What do I have? How does it work? And how is it limiting me and stuff?" I mean, I can go about my normal life like almost 100% of the people. I don't have any problem communicating. I do everything else normally, I just live my life in a wheelchair.

Tamara: But at the beginning it was hard because of school. I think that here in Chile it's still very difficult. The university, the school, the student's life in general. Children are still cruel and sometimes it's because they're taught that at home. So I suffered a lot with that and with the issue of bullying and all that.

Jamie: Tami is a fighter and she established a sense of resiliency from an early age that has carried her through every challenge and setback she's faced, most recently, the postponement on the games, but even still, she sees this as an opportunity to grow and learn and hasn't given into despair.

Tamara: I believe that champions are born out of crises. So I think that is a critical moment for everyone, but that we can draw great lessons from this moment. So actually now I think there is a lot more time to work and I look at it on the bright side. We can improve what we had not been able to improve in this time and then we wait.

Jamie: To add to this, Tami has been dealing with a wrist injury. Now to review your wrist is super important in the sport of table tennis.

Tamara: I fractured my wrist and it broke so I'm on leave for 10 days and then we'll see what we can do.

Jamie: The fact that we're three months out from the Paralympics and Tami is injured and that she's able to shrug off her injury, caught me seriously off guard. If I was in her shoes to say I'd be freaking out would be a massive understatement. But she says she'll still be in Tokyo.

Tamara: I'm going but well, at the moment, I obviously feel a little discomfort in my wrist. You can't let your guard down so to speak and I'm not stressing.

Jamie: Tami and her mom aren't the only ones optimistic about her recovery and her road to Tokyo. I spoke with someone else about Tami and the fact that she'll be representing Chile at the Paralympics this year.

Ricardo Elizalde: My name is Ricardo Elizalde, the president of the Chilean Paralympic Committee. The Paralympic Committee started operating in 2014 and it was recognized by the government in 2017, and considered the equal governing body to the Olympic Committee. Tamara in these past seven years, she's had many sporting achievements. In fact, she was a Pan American champion. She's also ranked worldwide and only the best athletes in each country go to the Paralympics.

Jamie: Mr. Elizalde sees Tami's story and success as a great encouragement and source of inspiration for other Chileans with disabilities who have the desire to compete, but maybe are unsure about how to take the first step.

Ricardo Elizalde: I want to tell all the people with disabilities that we have realized that sport is part of the rehabilitation process. And in Chile, the possibility exists, the conditions exist. If you have the desire and the ability to be an athlete like Tamara then represent our country.

Jamie: Well, Tami's story is a source of incredible inspiration for others. She has very clear dreams for herself. I asked her what her dreams are as she approaches Tokyo.

Tamara: Let's see, I mean, to win a championship or a Pan American Championship, a World Championship. Well, now I'm happy with the Pan American, but the World and Paralympic, obviously it's my biggest goal to get a medal there.

Jamie: Tami's mom dreams of the same thing.

Paola: My dream as a mom is that she will be the world champion.

Jamie: And even beyond this, Tami also has the dream and vision for what she'd like to see happen in the future of the Paralympics.

Tamara: I think we have to start from the basis that we don't have to call ourselves Paralympians. I think that we're all athletes and as such, there should not be a separation, but would like to be level at some point, to be equal to equal. And I think that's true inclusion for me.

Jamie: And for anyone listening who has spina bifida like Tami, she has a word of encouragement for you.

Tamara: To never give up because actually that's what life is all about. And not only with sports, I think it's about everything, everything you can do in life. So keep on working hard. The most important thing is to always fight.

Jamie:Thank you for tuning into Flame Bearers: The women athletes carrying Tokyo's torch. For more behind the scenes coverage, follow us on Instagram and Facebook by searching for Flame Bearers. Thank you to the Chilean Paralympic Committee and Spina Bifida Association for their partnership on this episode.

Thank you to Melissa Mittelman and Kyle Harrold for being the voices of Tami and Ricardo. Thank you to Michelle Poulin for finding Tami and to Maddie Ulanow and Sarah Asad for their wonderful help. Massive welcome to the team, Hayek Serrato, we're honored to have you. Thanks as always to Dino Cattaneo for his mentorship. We'll catch you on our next episode.