Betsy MacMichael: A tribute to the siblings of kids with disabilities

By Betsy MacMichael : Special to The Herald-Sun
desmac@intrex.net
Jun 22, 2003 : 7:05 pm ET

DURHAM -- Brothers and sisters of children with disabilities grow up with a special experience. They see people with disabilities as people, first. As siblings, they have fought, cried and played with their disabled brothers and sisters, as well as competed for scarce family resources.

They love their brothers and sisters, even as their awareness grows that the world will not accept their siblings unconditionally -- as they will.

These brothers and sisters also have been challenged more than most children. They see their anxious parents fight the system, they watch mom and dad rush out the door with medical emergencies. They know parents who are less available to them than the parents want to be, and the children would like them to be.

With all that going on, most still love their siblings fiercely.

At 3, Janie's sister Rosa looked at her newborn sister and said, "Look, Mom, she's a baby life!"

By age 10 she picked new friends partly based on how comfortable they acted with her little sister with cerebral palsy. At 12, she cuddled in bed with Janie and talked about boys, offering Janie a tunnel toward impending pre-teenhood. At 14, she describes the "clueless world" she sometimes sees. Recently, she warned me about a popular movie: "You wouldn't believe how degrading to people with disabilities it is."

Rosa isn't alone.

Anne, 23, grew up in Durham with brother Mark, now 18, who was born with multiple disabilities. When Anne first saw her newborn brother she asked her mom about the NICU incubator: "How will they get him out of there, that little glass house?"

Through childhood, Anne learned to go with the flow as mom once again went off in an ambulance with her brother. As a preteen, Anne remembers anxiety when friends visited. What might they think of her brother? One told her she liked coming to Anne's home, because Anne's family was the most normal one she knew.

As a high-schooler, Anne wrote her college entrance application essay on her experience as a sibling, a poignant, deep unsentimental expression of her unique experience.

Siblings of kids with disabilities are ambassadors without even trying. Wherever they go, for as long as they live, they will project a healthy, natural attitude about people with disabilities. They will notice stereotyping and reject it.

In the '50s, many kids with disabilities did not survive like they do now, so this sibling experience is relatively new. Some of the siblings are now writing about their experiences.

In a New York Times book review of Jeanne Safer's "The Normal One," writer Reeve Lindbergh wrote that Safer is "wary of the tendency in our culture to sugarcoat the experience of living with `handicapped' children as a blessing." A different perspective is offered in "Riding the Bus with My Sister" by Rachel Simon. The author documents a year spent hanging out with her disabled sister, whose preferred activity for the past nine years has been riding the city buses.

As Anne has matured, she sometimes expresses ambivalence and fear. Her love is mixed with concern about what her future responsibility for Mark will be. Still, when she calls home, she always asks to talk with Mark, who does not communicate in words. He answers her with the kisses he blows into the receiver, after she tells him their favorite childhood stories, once again.

To Rosa, Anne and the many other siblings of children with disabilities, I think there should be a national day to honor you. You may not be heroes, but you are really cool people.

Thank you for the lessons, pranks, common sense, patience and love you share. And thank you for reminding your parents that their life must not exclusively revolve around their more challenged child.

Resources

-- For information on SibShops and other resources for siblings of kids with disabilities, call Durham Arc, at 493-8141.

-- Sibling Support Project (www.thearc.org/siblingsupport) is a national program dedicated to siblings of people with special health and developmental needs.

Betsy MacMichael of Durham is a parent and advocate for a daughter with developmental disabilities. She works for First in Families of North Carolina's New Horizons Project, a nonprofit public education and awareness effort centered on disability issues. She can be reached at 781-3616, ext. 223, or by e-mail at desmac@intrex.net.