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Faces in the CROWD

Reprinted from PN June 2012

The Baylor College of Medicine's Center for Research on Women with Disabilities (CROWD) is focused on understanding and helping women with disabilities.

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After 20 years of concerted research, Margaret “Peg” Nosek, PhD, is on to a secret.

“We’re not victims of our disabilities,” the 60-year-old Texan says. “We’re victims of how society responds to our disabilities.”

OK, that is a revelation to no one. But quantifying the facts that confirm how societal attitudes negatively affect women with disabilities and getting the information circulated to improve their health and life choices is where Baylor College of Medicine’s Center for Research on Women with Disabilities (CROWD) comes in. Nosek is the executive director of CROWD.

“It’s research,” explains Nosek. “We don’t offer programs. I would love to do that. Maybe someday we will. Our mandate is to do research.”

A Hidden Talent

Nosek has spinal muscular atrophy and uses a power wheelchair. She started her adult life heading to college in the Lone Star state to study music—oboe. That’s when she discovered how difficult it was for a woman with disabilities to arrange for basic aid and assistance.

“It was amazing to me,” Novek offers. “I was struggling to survive and live independently, and on the other side I was doing all these esoteric things in music.”

The dichotomy of her experience got Novek involved in the disabilities advocacy community, and she discovered a hidden talent—grant writing.


Margaret Nosek, PhD (foreground) says self-esteem seems to make the biggest difference in the health and life satisfaction of women with disabilities.

“It was in a time when the independent-living movement was just getting started,” she says. “I decided to write a grant to start an Independent Living Center in Austin (Texas), and the grant was approved.”

Nosek was spending time with noted personalities in the disabilities community, such as Justin Dart and Ronald Mace.

“I was getting totally immersed in disabilities-rights advocacy,” Nosek remarks. “We wrote a lot of the predecessors to the Americans with Disabilities Act.”

At Mace’s urging, she headed back to school for a degree in rehabilitation research, a hybrid degree that combined medicine with psychology. Nosek went on to found CROWD  from there. She started it with a grant from the National Institutes of Health to study sexuality and women with disabilities.

A Key in the Lock

That was in 1992, and the center blossomed from that research. While the study was aimed at uncovering more about women with disabilities and their sexuality and reproductive health, Nosek says it quickly became apparent to researchers that we cannot separate life from sex.

“We started out with very open-ended questions,” Nosek explains. “We started with a group of 30 women, and we just listened. They talked anywhere from one hour to five hours. We came up with five major themes. One of those, and this is just one, was about self-esteem.”

Self-esteem, she says, is what seems to make the biggest difference in the health and life satisfaction of women with disabilities. In short, if women with disabilities see themselves as unattractive and failing, life treats them as though they are. If women with disabilities see themselves as attractive and successful, life treats them as though they are.

“I really believe, after 20 years of research, if there’s a key in the lock, that’s really it—self-esteem,” Nosek explains.

A New Lease on Life

Nosek doesn’t have to convince fellow Texan and woman with a disability Patricia “Tricia” LaBar. Interestingly, LaBar was injured in 1992, the same year CROWD started, although she’s never participated in any of its research.

At 53, LaBar has years of business and personal success behind her. Among other things, she’s been a National Veterans Wheelchair Games Spirit of the Games winner and a successful businesswoman who used her intimate knowledge of spinal-cord injuries to grow a medical-supply company. LaBar recently sold that business to focus on her family. She’s a member of the Lone Star chapter of Paralyzed Veterans of America.

LaBar says her self-esteem nosedived for three years after she was injured. She progressively isolated herself as others took care of her basic needs.

“After I got injured, for years I was a basket case,” she offers. “For years I wore jogging suits, because I couldn’t put on jeans.”

There was another reason for the jogging suits—one that increasingly threatened her health. LaBar needed loose clothing to hide one common result of low self-esteem.  

“I got up to 170 pounds; I put on a lot of weight,” she says. “When I went to the Wheelchair Games in 1995, it really changed my life. It’s hard to get that self-pity thing going when you’re with 600 people like you. I came back and started working out. Instead of concentrating on what I couldn’t do, I concentrated on what I could do.”

A Great Hope

It’s a much different version of events for a woman with disabilities than researchers at the center usually find. Nosek was the principal investigator for a report titled “Violence Against Women with Disabilities: Fact Sheet #1—Findings from Studies 1992–2002” (see “Abused Women with Disabilities,” by Margaret A. Nosek, PhD, June 2010 PN).

“Nearly two thirds of the participants with disabilities and those without had experienced emotional, physical, or sexual abuse at some time in their lives,” the report reads. “We took this finding as a mandate from the more than 1,000 women who participated in the study to delve deeper into the causes of and solutions to this problem.”

Nosek says she’s worked to get domestic-violence researchers looking at the unique problems for women with disabilities, and she says they’re starting to get mentioned in papers.

One of CROWD’s new projects is helping to facilitate communication among women with disabilities. Nosek says this offers one of the greatest hopes for helping them avoid self-esteem-destroying attitudes, and to foster their self-images. On tap is a project using Second Life, an online virtual world created by Linden Lab. Participants, called “residents,” interact with one another through “avatars.”

“This is the future,” Nosek offers. “Women getting together on the Internet in a (three dimensional) virtual space. When we’re done testing, we’ll be opening it.”

For more information, visit bcm.edu/crowd.  

 

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Faces in the CROWD

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