By WENDY LU
December 8, 2016
Sometimes when Tabitha Estrellado meets a man, he will extend a hand and expect her to shake it. But she can’t — and it’s awkward to explain why when you’re trying to flirt.
Ms. Estrellado, 32, has muscular dystrophy, a chronic disease in which muscles weaken and waste over time until they no longer work at all. Even as your brain commands a finger to curl or a toe to wiggle just a few centimeters, nothing moves. It’s a challenge in the world of dating, where even the subtlest gestures can carry a lot of intention.
For Ms. Estrellado, a singer-songwriter, the worst part about having muscular dystrophy is knowing that many people don’t see her as a prospective romantic partner to date, to marry and to have children with someday.
Still, she loves New York City night life and the possibilities that come with being in a crowd of strangers. On a recent night at Blackthorn 51, a rock club in Queens, N.Y., Ms. Estrellado maneuvers her wheelchair to greet friends. When she’s feeling too short, she raises her chair to the height of whomever she’s talking to.
“If I ever saw the pope, I would ask him to pray that I find love,” she says with a sad smile.
Dating is an emotionally risky proposition for everyone, but it is particularly challenging for people with disabilities. People who rely on wheelchairs or who have another form of physical impairment often begin to date much later in life, and the rate of marriage is lower, according to Dr. Margaret Nosek, who is the executive director of the Center for Research on Women with Disabilities at Baylor College of Medicine and has muscular dystrophy. The overall first-marriage rate in the United States for people ages 18 to 49 is 48.9 per 1,000. For people with disabilities it’s just 24.4, according to Philip Cohen, a sociologist at the University of Maryland-College Park who studies family inequality issues.
In many ways, young women with disabilities are just like other women their age when it comes to dating. They like dance clubs and meeting new people and some participate in the casual hookup culture common among young people today. But women with disabilities can also be more vulnerable.
They are more likely to experience relationship abuse and less likely to report the behavior than nondisabled women, Dr. Nosek says. The less mobile a woman is, the more likely she is to experience relationship abuse, research has found.
In 1992 Dr. Nosek spearheaded the National Study of Women with Physical Disabilities, one of the first research studies to find that its participants had experienced abuse specifically related to their disability. For instance, a person might take the victim’s wheelchair to isolate her. Emotional abuse might involve ridicule or mockery of her body or her disability.
Online dating services have created both new opportunities and risks for people with disabilities. DisabilityDating.com caters to the disability community. Sites like eHarmony and Match.com offer specific advice to people with disabilities and those who are open to dating someone with a disability. Be realistic, advises eHarmony, reminding us that the “heart works, even if some body parts don’t.”
“I just wanted to feel something.”
Until last year, Ms. Estrellado was active on several dating platforms in the hope of finding a significant other. Instead, she discovered men who wanted to be physically intimate, but not fully commit to a relationship.
For months, she would secretly hook up with men she met online. It wasn’t easy, as Ms. Estrellado has six personal aides who switch day and night shifts throughout the week. Then one man accidentally dropped her on the way to the bedroom, resulting in severe injury, and she had to tell her friends and family the truth.
Her best friend was upset that she had put herself in a situation where people took advantage of her. Ms. Estrellado’s parents seemed to understand. “My mom was happy that I tried to have sex,” Ms. Estrellado says.
For more than three months during recovery, Ms. Estrellado couldn’t leave her room. She wondered if love wasn’t meant to be.
“I just wanted to feel something,” she says. “I only did it because I realized a guy could actually like me in that way. In the hookup world, men don’t care about wheelchairs.”
“I have all the same desires.”
Ally Bruener, 28, is a standup comedian with congenital muscular dystrophy.
As part of her onstage persona, Ms. Bruener, who lives in Alexandria, Ky., and uses a wheelchair to get around, dresses up in a buttoned cardigan and a colorful headband, a girlish look intended to throw off her audience. She surprises them with crude jokes. “Boobs are nature’s stress ball,” she quips.
Her hope is to break down the misconception that people with disabilities should be treated like children or non-sexual beings. “I still have all the same desires for the future as any other woman my age,” she says.
At one of her comedy shows, a woman walked up to Ms. Bruener afterward and said, “I think it’s great that you joke about sex, like you actually know what you’re talking about.”
But Ms. Bruener does actually know what she’s talking about. She meets men through dating sites like OkCupid, and is in the “talking stage” with more than one at any given time. She’s not shy about the fact that she gets action. “I put out early,” she says.
Ms. Bruener’s first boyfriend several years ago didn’t show much physical interest in her. It wasn’t until she started dating her most recent boyfriend, Noah, that Ms. Bruener says she finally felt like she was being taken seriously as a potential mate.
“He felt like he couldn’t take care of me.”
Emilie McCauley, 24, doesn’t use a wheelchair, and when people meet her, it’s not apparent that she has muscular dystrophy. But experience has taught her that she is still vulnerable in the dating world.
In 2011, Ms. McCauley exchanged numbers with a man she met through a mutual friend. Daily texting conversations led to a relationship. But soon he became sexually violent, and she didn’t have the physical strength to fight back.
“I got into a position where leaving the relationship was extremely difficult and scary,” says Ms. McCauley, her eyes downcast.
She later found a more supportive relationship when she began dating a friend she had known for years. He wanted to learn about muscular dystrophy and how Ms. McCauley’s other health conditions affected her body, and offered emotional support.
The topic of marriage came up often. They spoke of having a family and growing old together. But after dating for more than a year, the frequent overnight hospital visits and the uncertainty of Ms. McCauley’s health began to overwhelm her boyfriend, and the relationship ended.
Taking care of a person with limited mobility can put stress on a relationship, says Dr. Michael Miller, a neurologist in Cooperstown, N.Y., specializing in neuromuscular diseases.
“Sometimes, the caretaker resents the fact that they have to do the caretaking,” Dr. Miller says.
In the middle of their breakup, Ms. McCauley’s partner told her the unpredictability of her health was too much for him.
“He felt like he couldn’t take care of me like he needed to,” says Ms. McCauley, who is from Greenville, N.C.
Ms. McCauley says that she’s not interested in dating for a while. She takes comfort in her dog, Cassie, a Labrador mix she got as a present. For now, Cassie and her family are enough to make her feel loved.
“After thinking we were going to spend the rest of our lives together, it makes it hard to want to be with somebody else,” Ms. McCauley says.