Ten years ago, if you would’ve asked Adiba Segal what she’d be like at 38, there are some things she may have nailed. She couldn’t have fathomed the following: published author, burlesque dancer and fashion model, and absolutely, certainly, definitely not cyclist.
That was a while ago, though.
Before life, before pain and struggle, before Emory.
Emory is a beautiful 6-year-old spark plug with bilateral schizencephaly, a birth defect that affects motor skills, speech and movement. It is rare — only 1.48 out of 100,000 births — and it is unrelenting.
But not as unrelenting as Emory and her mother.
Every step of the way, doctors have told Adiba what Emory can and can’t do. Won’t be able to function in classrooms, won’t be able to communicate, won’t be able to walk. She’ll be in the wheelchair forever.
Adiba has one job: Help Emory prove all that wrong.
“I know she’s gonna come across things that are going to knock her down,” Adiba said. “If you get knocked down, and you break a bone, well then you broke a bone, and you keep moving. Some would argue that’s not the best way to go about things, because the world will be stacked against her and there will be limitations.
“It’s not my job to limit her, the world will do that. It’s my job to teach her how to give the world the middle finger.”
And that’s how Adiba found herself on a bike in the middle of Tucson.
Emory’s the catalyst
Tucson Medical Center El Tour de Tucson has more inspirational stories than the latest edition of “Chicken Soup for the Soul.”
Adiba didn’t want her 11-mile ride to come off that way, come off like, as she says, “inspiration porn.”
“When someone disabled does something any other kid would do, it becomes everything,” she said. “I had that going through my head. But you know what? Emory really is that inspiration for me.”
Without Emory, there would be no book — “Meet ClaraBelle Blue” — that Adiba wrote for her daughter and had illustrated by a friend. First she got the gumption to write it, then to publish it. It has sold well enough to introduce Adiba to a career as an author and blogger.
Without Emory, there would be no burlesque, as Adiba took to the stage – stereotypes be damned – to flaunt her stuff.
“I don’t fit the body frame or physical appearance of a burlesquer,” she said. “I’m heavy, I’m black, I have a gap in my teeth, natural hair. I’m everything in the burlesque book of don’ts. If I’m going to teach her that her body is fine just the way it is, then I have to embody that as well.”
Without Emory, who knows if she would’ve ventured online to find love, where she found Scott Segal, whom she married Nov. 8. Her boldness and zest for taking on the world was, in a word, sexy.
“It’s an incredibly attractive quality,” said Scott, a computer programmer. “She was already well on that path when we met, and that was my impression of her from the start. It just kind of shines through. I don’t think it is as common as it should be.”
It is not, and it has been passed on to her daughter, which is why the Easter Seals Blake Foundation tabbed them in the first place.
“Momma don’t do that”
The Easter Seals Blake Foundation has been involved with El Tour for three years, chief development officer Jennifer Turner said, and two years ago, they asked Emory to be an ambassador.
When Jennifer told Adiba about the ride, Adiba was incredulous.
“When I got the call, I said, ‘Hold on honey: momma don’t do that,’” Adiba said with a laugh. “I hadn’t been on a bike since I was 18!”
But this was for a special cause, several in fact.
The Easter Seals Blake Foundation is one of the largest nonprofit social service employers in the state, providing a variety of programs and services, early intervention, family support, child care and independent living training.
“Our whole purpose, our whole mission, is to help people achieve the quality of life they want,” Turner said. “It may look a little different in terms of how, but they should be able to have the experience.”
One ride at a time
That was the hook for Adiba, what reeled her in.
Riding for Emory was the line, and riding for herself was the sinker.
Workouts on the bike have turned into workouts in the gym.
“My daughter needs me to take care of her,” she said. “She’s getting heavier, I need to lift her. My mom’s older, my husband’s older than me, and there is no guarantee they’ll be around forever. I have to make sure I can be around for her as long as I can.”
She started training for this year’s El Tour during, of all times, the brutal Tucson summer. Foot-by-foot, pedal-after-pedal. She improved. Her first ride, she did three miles without realizing it. The next time she tried five, and survived. Then she figured, if I can do five round-trip, I can do five there and five back. She inched forward, and she learned a few things along the way.
“Let me tell you, padded seats are a gift from God,” she said.
She bought padded pants, and eight miles became 12 in an hour, a respectable number.
She started becoming vocal about her training, sharing her successes — and failures — with the world via social media.
“When she was training, she’d do these posts about loving the breeze,” Turner said. “As she went through and continued, she realized she could accomplish what she wanted, and that speaks to everything with Emory. When you look at how far Emory has come, it kind of mimics Adiba’s experience with El Tour.”
Leading up to the race, she felt confident and excited, but the day of the race got off to a bad start. The plan was for Scott, who hadn’t trained for the event, to attempt the four-mile ride, with Emory hitched to the back of his bike with a Weehoo bike trailer. As they gathered their things and prepared the bikes, one of Scott’s tires popped. He tried to repair it, but to no avail.
Adiba would be going it alone, and the inconspicuousness startled her.
She was used to solitary rides, just her against herself and the breeze, and here she would be with 8,000 other riders, 16,000 eyes. She slinked to the back of the pack, hoping to become anonymous as others whizzed by.
The race itself was worse than she’d anticipated.
“Harder than hell,” she said. “Riding on the bike path, it’s fairly flat, a couple hills on an underpass. Riding El Tour, I wanted to kill myself. There were times I wanted to stop. But I kept thinking to myself, ‘Your daughter learned how to walk for your wedding. You’re gonna stop? Are you joking?’ So I kept on.
“And it’s really hard to ride with tears in your eyes, but you do it.”
And when it is all over, when you have that kid in your arms, hugging your neck like she’s never let go, what do you say to yourself?
“I did it,” she said. “I did it for my kid. I did it for my kid, who if she could have, would’ve done it for herself.”