Parents with disabilities bring new responsibilities

Nov. 13, 2003, midnight | By Olivia Bevacqua | 17 years, 2 months ago

Blazers are thrust into adulthood to help their families overcome physical limitations

Junior Amanda Lee lives in a house of flashing lights. Every phone ring is marked by a blinking yellow beam. Each time someone pushes the doorbell, a white strobe pulses near her father's desk. The smoke alarm is bathed in the glow of a flickering red bulb. While the lights may seem like something out of a sci-fi movie, they are actually an essential part of keeping Lee's life sane.

Both of Lee's parents are profoundly deaf, making them two of 24 million Americans who live with significant loss of hearing, according to the Hearing Alliance of America. Disabilities are widespread in American family life. Over 15 percent of American families include at least one parent with a disability, according to a recent National Health survey. For Blazers with disabled parents, these statistics translate into unusual responsibilities to help them work around their parents' impairments.

A helpful set of lips

Lee has interpreted for her parents since kindergarten, helping them communicate in stores or at doctors' appointments with hardly a second thought. She claims that the task is trivial, though it can be awkward on occasion. "Sometimes when my mom's upset [at the person I'm interpreting to], I won't follow what she's saying. It's weird to be upset at a stranger if I don't even know what's going on."

Although Lee considers interpreting to be "no big deal," other Blazers say that helping their parents communicate brought on responsibilities that impacted their role as a child. Senior Kyle Cohen has been interpreting for his deaf mother since age five. "I was always making phone calls for her. There would be business calls, fax conflicts; sometimes I'd get involved with contractors. A lot of times I had to be the man of the house," he says.

Cohen's case is not unusual, according to social worker Lisa Tragert. "These kids are often drawn into conversations about things above their maturity level. They can get anxious or worried about financial issues, medical problems—whatever the subject of conversation is."

Responsibilities sometimes transcended interpreting, according to Cohen. "When my little sister was born, she'd wake up and cry in the middle of the night," he says. "I'd have to get up and do parenting stuff that many kids don't have to deal with when they're 12 years old."

More to coping than meets
the eye

Going out with her friends used to be difficult for Lee because of communication issues. "I couldn't just call [my parents], and using the relay service was a pain," she says about a text messaging system that requires an operator. Contacting her parents eventually became easier with the arrival of e-mail and pagers. For other Blazers, working around their parents' disabilities requires permanent changes in routine activities.

Typical chores for senior Tamara November-Moss include cooking and grocery shopping for her legally blind father. However, November-Moss has one extra thought on her mind as she grabs ingredients from the fridge to make dinner: putting everything back in the same place. "Even though he can see shadows, you still have to leave stuff where he'll recognize it," she says.

Learning how to assess situations and make appropriate accommodations is a skill that must become second nature to family members of the legally blind, according to physical therapist Valerie Higgins. "For example, if you leave a glass on the table in a place that is usually bare, the parent could knock the glass off and cut themselves," she says.

Safety is not always a dramatic concern for people coping with a disability; attention to the mundane needs of their parents can also be part of these Blazers' everyday lives. Junior Max Czapanskiy's father has only one hand and needs help tying shoes, removing bottle caps and opening packages. "Basically, it's just a lot of annoying little things," says Czapanskiy with a laugh.

"Just an afterthought"

Regardless of the extra responsibility involved, Blazers say that having a parent who has a disability is not a defining feature of their life. Lee admits that many people don't know that her parents are deaf, simply because she never thought it was worth mentioning. She recalls an experience at summer camp last year in which the other kids found out about her parents' deafness. "For the rest of the week, I was ‘the girl who could sign,'" she says, frowning. "It made me uncomfortable because having deaf parents isn't me. It's almost just an afterthought."

A disability can also have a positive impact on a relationship, says junior Luke Hanlein. Hanlein's mother has multiple sclerosis, a degenerative disease of the central nervous system that can affect motor, visual or speech abilities. Helping his mother has caused him to spend additional time with her, Hanlein says. "Since she can't work, she's always at the house. I think that's helped bring us closer."

Living with a disabled parent has not only helped strengthen relationships at home, but has also given Blazers a new awareness of handicapped people they encounter in school or at work. "It's not something that I can just look at and walk away from, because I've seen everything that's happened to my mom," says Cohen.

Emma Hutchinson, a sophomore whose father has myotonic muscular dystrophy, a medical condition which causes muscle stiffness, says she doesn't see him as any different than a "normal" parent. "I personally don't even think of him as having a disability," she says. "He's my dad."

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