Heart to Heart

Love Connections Between People with Disabilities

By Anna Quon

Neil and Laura Allen exchanged vows in September

Bernadette and Leigh Derry have been together 20 years, and married for nine. The two, who both have spina bifida and use wheelchairs, have known each other since the age of 13 when they met on a bus in Cape Breton, N.S., that was taking them to a camp for people with disabilities in New Brunswick. At home in their Halifax apartment, Leigh says, "It's nice to have someone to come home to." Bernadette agrees. "Nobody wants to be alone."

Couples in which both partners have a disability enjoy many of the same benefits and face many of the same challenges that other couples do. They also present unique benefits and issues. The Derrys, for example, weathered the initial concern of Leigh's parents, who, he says, "worried about how we would cope, how we would survive." Then, when Leigh was unemployed, he says, "Social Services got involved and there was a whole different dynamic. With social workers sticking their noses in, it was stressful."

But life, they say, is much better together than apart. It's clear from the way Leigh and Bernadette give each other space to talk that they like and respect one another. Having the same disability, they say, enables them to relate to one another's needs and understand how each other's bodies work. They help each other - Bernadette does a lot of the cleaning, and Leigh can assist her in and out of the tub. As for sex - "Well," Leigh says, smiling shyly, "Sex means different things to different people...it's more the mental than the physical."

But the physical did play into their attraction for one another. Bernadette was immediately drawn to Leigh's green eyes, and she admires his upper body strength. She also appreciates his emotional resilience and sensitivity. It took Leigh longer to feel the same attraction for Bernadette, but as he got to know her better, he realized she, too, is a beautiful person.

They aren't afraid to show their feelings for one another. "Romance does play a part in our relationship. We are not afraid to show our affection towards each other when we are in public...to a point," chuckles Leigh. Bernadette explains, "I think passion can be just looking a certain way at someone and not saying a word, or holding someone's hand and knowing how they feel about you."

NEW BEGINNINGS

Diane Hetherington, a family therapist with Breakthrough Co-op in Halifax whose practice includes many single people with disabilities, says it can sometimes be difficult to establish relationships because we don't have "unlimited access to opportunities to find partners." This may be due to the discrimination and barriers that people with disabilities still face. As a result, many of us may have fewer peer relationships and less opportunity to develop social skills and "savvy." Hetherington says the biggest challenge for young people with disabilities in her practice is to find someone who they feel accepts them for who they are.

For singles who aren't interested in the bar scene, there are websites designed just for people with disabilities, including Dating4Disabled.com and Soulful Encounters.com. The latter was launched by Louise Maxwell of London, Ont. While setting up the site, Maxwell met people with disabilities who shared their hopes for finding a partner. One woman who'd had a stroke said she can't "keep up" with non-disabled people she meets online, and that she wants to meet someone who understands and accepts her disability.

Maxwell says that many of those who sign up "want to meet their lifetime partner whom they could get along with emotionally, spiritually and also intellectually." Relationships between couples with disabilities, she adds, are the same as any other, except they have some additional challenges. And, she quips, "The heart isn't handicapped." (Read more about Soulful Encounters on page 40.)

Not all people with disabilities are open to dating others with disabilities - at least, not at first. A blind man in Halifax spoke of his reluctance to date a blind woman because he asks his partner for help with reading, filling out forms and describing TV shows.

Another man with a spinal cord injury, now married to a woman with the same disability, said neither he nor his spouse had considered dating another wheelchair user because of practical considerations, such as depending on a partner to take things down from high shelves or do housework. But when she needed a wheelchair-accessible place to stay short-term, they met through a mutual friend. Now they are renovating a home together.

There are also financial considerations to think about. Couples in which both partners receive income assistance may have their funding reduced if they move in together. Even when this is not an issue, there may be financial hardships that a couple with disabilities faces when they decide to live together or get married.

Laura and Neil Allen of Harrowsmith, Ont., took a hard look at how their finances would be affected before deciding to marry. Both employees of the Independent Living Centre-Kingston, they met on the job in 1999 and have since built a house together.

Laura has multiple sclerosis, and her medications would cost $20,000 a year if they were not covered by the Ontario Trillium Drug Plan. Still, she has to pay a high deductible, an amount that doubled when she married Neil, who has quadriplegia, since it is based on a percentage of household income. Neil's medications and medical supplies, which are not covered, add up to hundreds of dollars a month. The added cost didn't stop them from exchanging vows, says Laura, but it's one of the "unneeded strains" on their relationship.

Leigh and Bernadette Derry have been together for 20 years

DOES LOVE CONQUER ALL?

There are definitely quirks and challenges to romances between people with disabilities. For people with intellectual disabilities, the problem of finding and maintaining a relationship may be particularly acute. People with significant intellectual disabilities may need support in the tasks of daily living, which may have an impact on intimacy and role responsibilities (who does what).

In her reading, Hetherington says, she has come across research that indicates couples with intellectual disabilities are most likely to maintain their couple relationships if they have considerable family and community support, and if their strengths complement one another - for example, if one member of the couple is good with money and budgeting, and the other is good at different things.

Not all relationships between couples with disabilities are destined to work out. Bryan M. (not his real name), a polio survivor who uses a wheelchair and electric scooter, has dated women with disabilities. Several times, he says, his girlfriends' families intervened. "Some people have the idea that two people with disabilities could not handle living together because they wouldn't be able to cope with the everyday situations of married life," he says.

Most recently, Bryan was engaged to a woman who had had a stroke. They recently separated because of her family's interference. "I was worried about her injuring herself because of the stress," says Bryan. "I told her we should break it off."

Couples who do stay together might have to adjust to each other's disabilities and get used to new routines. For example, Neil Allen's need for an attendant can sometimes make it difficult for him and Laura to take trips or go away for the weekend alone. And, it took a while, but Laura has gotten used to Neil's attendant coming into their bedroom and saying "Good morning!" while flicking on the light switch. "You learn to accept this as part of the package," she says.

The question of whether or not to have children has also come up. Neil says they are curious about the idea, but he recognizes their limitations. If the baby were to cry in the middle of the night, Laura would have to get up, and Neil is concerned about how that would affect her energy level. He feels that the parenting responsibilities could be worked out with attendants, but he laughs and wonders, "Can you handle it and remain sane?"

The Derrys say they've also thought about having kids. "It's just not our top priority right now - our top priority is one another," says Bernadette.

As in all successful relationships, these couples work every day at building their bond and addressing problems that may arise. "Even though the barriers for each of us may be different, we both have a respect and understanding for the other's needs and we work together on creating solutions," says Laura. And, adds Neil, from sex to finances, "Communication really is the key to a good relationship."

When asked what's kept them together, the Derrys say it's trust, loyalty and honesty. Bernadette is working on obtaining her high-school diploma, and Leigh is a help desk representative. He says with a laugh, "I just want to stay employed."

They say they're in it for the long haul. Says Leigh, looking fondly at his wife, "Till death do us part has a meaning."

It's not a good feeling, the Derrys say, when people look upon them with pity, or even when they see them as inspirational. "We're just two people in a relationship," Bernadette says. Leigh agrees. "The fact that we have a disability is secondary."

Anna Quon is a writer in Dartmouth, N.S.