On Track & On a Mission

By | 2017-01-13T20:43:31+00:00 August 1st, 2011|
Contact The Editor

By Kent Cadogan Loftsgard and Aaron Broverman

Ever since she was a child, Tatyana McFadden had excelled at every sport she ever tried: swimming, gymnastics, wheelchair basketball and track. Elite coaches at every level had fought over her from day one. But getting her involved in sports at a young age, says her mother, Deborah, had nothing to do with building a super wheelchair athlete — and everything to do with ensuring her survival.

“It was purely, how can I keep Tatyana alive?” Deborah says. “It was, I need to do everything I can to get her strong and healthy, because if she’s strong and healthy, she’ll live, and if she lives, I’m going to make sure she gets all that life has to offer.”

In St. Petersburg, Russia, where Tatyana was born with spina bifida in 1989, children that didn’t survive past the first 21 days of life were not counted as ever existing. So Tatyana spent three weeks with a hole in her spine in the less-than-sterile environment of Orphanage Number 13, as her doctors and nurses prayed for her merciful death. Nevertheless, she lived, and they finally performed the surgery she needed to enclose her spine.

She kept on surviving, and through some error in paperwork, she wasn’t warehoused with the rest of the orphans with disabilities. She was placed with nondisabled children instead. There, after six years of walking on her hands, she hit the parental lottery, especially for anyone with a disability.

Deborah McFadden didn’t come to Orphanage Number 13 looking to adopt. As the commissioner for disability in the U.S. Department of Health and Human Services under President George H.W. Bush, she was charged with doling out billions of dollars in humanitarian aid to tens of thousands of orphaned children in the former Soviet Union. As a powerful person representing disability in America, Deborah could’ve had any child she wanted. Then, she met Tatyana.

The orphanage director tried to push her toward all the cutest kids — and past the “undesirables” — but Deborah focused on a beaming Tatyana crawling across the floor, wearing a giant bow in her hair:
“The bow was bigger than her head,” Deborah remembers. After that, no matter how much Deborah’s head said no, her heart opened wider.

“Adopting a child was the furthest thing from my mind, let alone an older child, let alone a child with a disability.”

A Personal Connection, A Natural Connection
Deborah knew disability personally, having been diagnosed with Guillain-Barré Syndrome in the late 1970s. She spent four-and-a-half years in a power wheelchair and eight years on crutches in a pre-ADA America that “definitely judged a book by its cover,” she says. Deborah went from being a “straight A” student to being someone who drooled while people talked at her with insultingly slow speech.

“The struggles I had were enormous, not just healthwise, but also living life. It was a different time. I was denied jobs and education, and I saw how people treated me. And I was thinking of adopting a child with a disability?”

Deborah took Tatyana everywhere, even into the orphanage director’s adults-only office. When the director raised her pinky finger while drinking tea, Tatyana did the same.

“I thought, this is one smart kid,” Deborah says. The next time the two would see each other, Tatyana would get her first taste of mobility, courtesy of a wheelchair Deborah brought her.

“I went back to my hotel that night and I couldn’t get her off my mind,” Deborah says. Meanwhile, back at the orphanage, Tatyana was telling everyone who would listen that Deborah McFadden was her mother. That’s when Deborah knew what she had to do.

“This connection between Tatyana and myself scared me a little bit. Whether she had a disability or not, it would have scared me.”

Soon, Deborah had a 6-year-old daughter who might only live a few more years, who didn’t speak English, and who needed several more surgeries. Nothing in Deborah’s high-ranking position as a woman with a disability had prepared her for all that. Tatyana’s needs were not just practical, but personal too.

“When I brought Tatyana home, I thought, number one, what can I do to keep her alive, to get her strong; two, what can I do to give her a childhood; and three, what can I do to help her achieve the best she can be, whatever that is, without regard to thinking, ‘Oh, she’s a person with a disability?’”

Sports fulfilled all three criteria. Tatyana was such a natural that she made coaches who “didn’t take handicapped kids” eat their words. She amazed the gymnastics coach by crossing the balance beam upside down on her hands and then climbing a rope all the way to the ceiling. The swim coach couldn’t believe Tatyana not only wasn’t afraid of the water but could even do a modified version of the butterfly (they called it “the moth”) without using her legs. Her mother says that was Tatyana’s style from the start — no fear.

“I love sports,” Tatyana says. “Sports brought me my new life; sports brought me health; sports taught me sportsmanship; it’s taught me teamwork; it’s taught me to be independent. I get to travel and I get to visit other cultures and meet a variety of interesting, friendly people. Sports brought me more than I can imagine.”

Tatyana McFadden is now the world’s fastest female wheelchair racer at almost any distance. The 22-year-old is currently ranked number one in the 200 meter, 400 meter, 800 meter and 1,500 meter among women in her T54 (completely functional from the waist up) classification. She collected three silver and two bronze medals at the 2008 Paralympic Games in Beijing; she won two marathons back-to-back: Chicago in 2009 and New York in 2010, but she first shocked the world in 2004 when, at the age of 15, she brought home both a silver and a bronze from the Paralympics in Athens.

“I had brought her out to California, where the tryouts were,” her mother says, “and people were all very nice, yelling out, ‘Good luck!’ And they’re all telling me, ‘Isn’t it nice you brought her. This will be such a great experience for her.’

[They were] being very nice, a bit condescending, but very nice. And all of a sudden, she wins! And people were like, ‘Whoa! How did that happen?’”

The Battle for Equality Broadens
Much of the credit for Tatyana’s athletic success goes to coaches Gwena and Gerry Herman of the Bennett Blazers, a wheelchair sports program in the McFaddens’ hometown of Baltimore, where Tatyana was introduced to the track. Her voracious and versatile athletic appetite and her reliable resilience came naturally, as did her ability to shape others’ attitudes just by living her life.

Deborah recalls one particularly memorable outing. “I brought three of her girlfriends to the movie theater. Maybe they were 9 years old. I pulled into the accessible parking space. And the three girls all went, ‘Whaaa? You’re parking in handicapped parking!’ I turned around and looked at them and said, ‘Tatyana’s in a wheelchair.’ And the three girls, with all seriousness, said, ‘Yeah, but she’s not handicapped.’ They saw her as a friend.”

Tatyana herself is well aware of the formative influence of her hardscrabble beginnings.

“There was this fight in me always, to live life, to pursue life, and to live it to the fullest. That is a huge part of me. It helps me to keep myself moving, knowing that nothing is impossible [after] being born and living in an orphanage for six years and surviving those conditions. If I survived those six years of the worst times, I have a lifetime to live great years. So, I take full advantage of it.”

Even after she returned from Athens as a decorated Paralympian, Tatyana’s fight continued. The same Maryland high school that honored her accomplishments with a special assembly told her she couldn’t join the track team and race with her nondisabled friends.

“When I went to high school, all I wanted to do was to run. All I wanted to do was to be equal, and I was shocked when I was told that there were sports just for me,” says Tatyana.

Although integrating Tatyana with her peers on the track team would not add time, cost, or alterations to the fundamentals of the sport, local officials would not be simply swayed toward a negotiated solution. So the McFaddens were pushed to pursue an unorthodox litigated remedy instead — suing not for money, or to compete against nondisabled athletes, but merely for the “opportunity” to race alongside them. As one of the original authors of the ADA, Deborah had the specialized legal connections they needed, but she warned Tatyana that moving forward could come at a personal price.

“Understand that if we sue, there will be a lot of people that will hate you. Lawsuits make people angry. Is it worth it to you to have people get so angry with you?”

Tatyana sensed that she could be setting a precedent for those who would follow her — especially her sister, Hannah, who was born with an incomplete left leg and adopted from an Albanian orphanage in 1999.

“Mom,” Tatyana asked, “if I don’t fight it, does that mean Hannah won’t be able to run?”

Deborah replied, “Probably not.”

Now Tatyana was sure. “Then I have to fight it even if people hate me. I don’t want my sister to have to face all this.”

Strength from Survival
In an April 2006 ruling, U.S. District Court Judge Andre M. Davis found the Howard County Board of Education to be in violation of Section 504 of the Rehabilitation Act of 1973, which stipulates that people with disabilities must not be excluded from any federally funded activity or program.

“This is where society breaks down,” Tatyana says. “This is where society is not educated, because they said, ‘There were sports for people like me.’ What does that mean, ‘people like me’? It’s important to be equal and it’s important to educate people about equality.”

Now nearly 16, Hannah recognizes how, thanks to her big sister’s trailblazing ways, she’s better able to make her own mark in wheelchair sports.

“I’m so happy she did it,” Hannah says, “because now the law is there so I don’t have to worry about it. Instead, I can just go in and race as well as I can.”

Tatyana McFadden advocates for inclusion of students with disabilities in their school sports programs.

Tatyana McFadden advocates for inclusion of students with disabilities in their school sports programs.

But Tatyana didn’t stop there. After learning that the district court’s ruling would only apply in Howard County, she asked her mom to help her draft a state law. Consequently, in 2008, the Maryland General Assembly passed the Fitness and Athletics Equity for Students with Disabilities Act, which guarantees full participation for students with disabilities in athletics and physical education. Before speaking to New Mobility, Tatyana had just been to Washington, D.C., to lobby the White House for an equivalent federal law.

While that’s still in the works, the National Federation of State High School Associations has joined her advocacy efforts by aiding seven more states (and counting) to pass similar laws instituting inclusion.

Tatyana knows that as London 2012 nears, the eyes of her competitors, and of the world’s media, will be watching and waiting for her every move. But the scope of that scrutiny pales in comparison to the pressure of her personal standard of preparation.

“My goal for London is to sweep — with all golds.”

Achieving such results may seem doubtful to most, but not to those who know her story — where and how it began. To them, her quest for Paralympic gold is just the latest chapter in a lifetime of survivor’s strengths that, as Deborah believes, nature forged into Tatyana’s being: “A friend of mine, a botanist, was telling me about thigmotropism. He said they did an experiment with wheat. Wheat out in the fields gets beaten around by the wind and yet, all the kernels stay on it. But when they grew wheat in a greenhouse, with no adversity, all the grain just fell. It didn’t hold on.

“‘In nature,’ he says, ‘when you see that there’s adversity, things get stronger to survive.’”