Having a disability doesn’t mean you can’t find the love of your life; young adults with neuromuscular disease share their stories and advice
If you have limited movement, how do you make the first move on a date? Is it OK to bring a personal care attendant on a date? At what point would you let a "significant other" provide personal care for you?
These and other questions not typically covered by the average romance columnist were discussed during MDA’s Dating and Disability Webinar, held February 8. The webinar was part of MDA’s Public Webinar Series and was put on by its Transition Initiative, which supports independence and achievement for teens and young adults with neuromuscular diseases.
Jonah Berger, of Empire, Colo., is program director for the Easter Seals camp Rocky Mountain Village and author of He Walks Like a Cowboy, which details his journey with disability. Berger, who has Charcot-Marie Tooth disease (CMT) and wears full-length leg braces, also helps run Band of Brothers, a Denver-area group for young adults with muscular dystrophy.
A veteran of a relationship "where my abilities were celebrated," he is currently single and notes, "While dating can be scary, it is a great opportunity to increase your bravery."
Whitney Foote, lives in central Indiana with her husband, Dan. Diagnosed at age 3 with congenital muscular dystrophy, she went on to graduate from Ball State University with a degree in public relations.
Shortly after graduation, she met Dan through an online dating site and "made it clear pretty quickly that I was in a wheelchair." Married in August 2010, Foote runs a home business with her husband. The couple hopes to one day adopt a child from the Congo.
Vance Taylor, of Alexandria, Va., is married with two daughters. A principal at Catalyst Partners (a homeland security consulting firm), he’s also a motivational speaker and blogger. Taylor, who has limb-girdle muscular dystrophy (LGMD) and uses a power chair full time, met his wife, Casey, through his sister who also has LGMD; Casey was his sister’s personal care attendant.
A veteran of "many rotten dates," he found it took courage for him to believe it could work out with Casey. "We can come up with all sorts of reasons why something will not work," he observed.
The panelists shared stories of how their dating relationships developed — or didn't develop — and advice about where to look for the right person and how to structure a date so accessibility isn't an issue. They discussed their fears of being judged on their physical limitations, and how they got past those fears.
"Be upfront and don’t be embarrassed," advised Taylor. "I make disability as small a part of my life as possible. You have to show how you can go out and have a good time. You set the expectation. You have to be comfortable and be confident in how you represent yourself. Sometimes you have to fake it until you make it."
Play to your strengths, urged the panelists, and map out the date in advance — know if the ice cream shop has a ramp, for example. If you need to bring a personal care attendant on the date, lessen the awkwardness by making it a double date.
|Whitney Foote and husband Dan|
When Foote was dating her future husband, she planned for accessibility. For example, because she was uncomfortable needing assistance putting on and taking off her coat, she wore layers.
"I made sure that during a date the time frame was short to eliminate bathroom issues. If going to movie, the plan was to go earlier so accessible seats were available."
Disability-related setbacks during a date can be used as a way of saying "welcome to my life," Berger noted, adding, "The nature of my disability requires assistance, but the key is the courage to communicate what you need."
Asking or allowing a romantic partner to do personal caregiving can be awkward, difficult, stressful and — ultimately — "beautiful," said the panelists. Each person has his or her own comfort zone with this issue, depending on the situation. Foote resisted husband Dan’s offers of help for quite a while, but allowed him to start helping with her morning routine about a month prior to the wedding.
"He was great about it — it was less of a big deal for him than me, and an opportunity to see how much he loves me."
However, she and Taylor both still employ personal care assistants despite being married, and Taylor warned that personal caregiving can put a lot of stress on a spouse.
The Dating and Disability webinar was organized as a result of an MDA survey of more than 1,000 young adults and teenagers with neuromuscular disease. "The vast majority made it clear that issues of friendship, romantic relationships, social supports and marriage were on their minds and important to them," said MDA Senior Vice President of Advocacy Annie Kennedy.
Survey results showed that 57 percent of respondents considered themselves as having friends and a strong social network; 53 percent stated that their social life could be better; 38 percent do not date or have romantic relationships; 9 percent are in committed relationships; and 7 percent are married. (Results may be skewed by the fact that 40 percent of respondents are under the age of 21.)
The survey is still open for responses at mda.org/transitions.
Foote: "Don’t try to rush it — wait for the time to come."
Berger: "Challenge yourself to be honest — it takes constant courage. I have been fortunate to date some great people. My disability added to the connection — it did not take away from it. The person will love you for who you are. We have no control over being born with this challenge, but how we accept it — how we face it — is ours. If you are ashamed, that is how you will feel. Instead, we can inspire and have control over it. How you take it is how it will be."
Taylor: "Having a neuromuscular disease doesn’t mean you can’t have fun. It’s what you make of it. People with neuromuscular disease have successful careers and families. It is your birthright. You have to be proactive to make it happen. You may have to work harder for it and have greater confidence, but that is the way it is.