Architecture Vs. Attitude
Kennesaw, Georgia (Senate District 37)
A long line, fifteen people deep, stretches out down the aisle toward the speaker. One man who’s been waiting patiently steps up, hugs and thanks her, and says, “If you had one piece of advice to give to immerse my co-workers and family to adapt into a growth mindset, what would it be?” Moments earlier, Yvette Pegues finished delivering a powerful speech to an amphitheater full of Georgia Tech employees about understanding the fixed versus growth mindset for Employee Learning Week.
Yvette Pegues, 36, has T-10 paraplegia from a spinal stroke six years ago. Symptoms that sent her to the hospital began as paralysis on her right side. Before her journey was over, she had decompression surgery because a previously undiagnosed genetic condition called Arnold Chiari Malformation was allowing part of her brain tissue to collapse into her spinal column. The condition had presented atypically, laying dormant in her body for a long time. It was during the decompression procedure to relieve the pressure on her brain that her spinal stroke occurred. “I walked into the surgery, but never walked back out.” At the time of her illness, Yvette was a network systems engineer pursuing a PhD from Harvard. “We went from earning six figures to owing six figures, overnight, with two small kids,” she says. (Story continues below after slideshow.)
The long road toward Yvette’s new life was full of many harrowing potholes. Yvette encountered extreme pain and nausea often, had violent tremors, and she had trouble controlling her words and emotions. It took her about two-and-a-half years of rehab. For a while, physicians struggled with whether to manage her physical symptoms or help recover her brain functions and intelligence.
While Yvette does currently receive disability, she is not on a Medicaid waiver that would help with her personal care, toileting, and transportation. She’s currently paying out-of-pocket for all that assistance. It could be transformative for her family to have that kind of support. Without Medicaid or a waiver, her family would need to pay upwards of $500-$700 per week to afford personal care assistance that she needs. At first, her husband stayed home to take care of her while working flexibly with his job in IT, but that blurred lines and impacted their relationship. He recently took a 70% pay cut so he could still work closer to home. At the time of her illness, they were living in a home with no physically accessible entrances. The family has since had to move into a retirement community. Yvette’s children balked at not having any peers to play with, but Yvette tried to encourage them to see it as gaining one hundred new grandparents.
If given the chance to speak to a legislator directly, Yvette would say, “I didn’t choose disability for myself. It’s expensive, and it’s humiliating when you have to beg for help. With some of the waivers and federally funded dollars that this community has been blessed with – it’s just not being fairly distributed.” She wants to know more about what goes on behind the scenes because sometimes it feels like you have to make yourself less to get more. Yvette doesn’t feel like she should have to make herself seem more disabled, dumb down her speech, or dampen her sense of style to prove that she has need.
“The world is not as accessible, as you think,” says Yvette. Speaking pointedly about the two-fold process of accessibility, she ponders the architecture versus attitude challenge. As such, Yvette thinks it might be easier to modify architecture than it is to change the hearts and minds of those responsible for change. She talks about how one could lead to another. If the general population knows enough people with disabilities, they will hopefully begin to advocate that all buildings and spaces should be accessible the way they should be.
It’s tempting to say that Yvette was dealt a lousy hand, but still managed to turn it into a winning one. “I’m not sure I’d say I’m winning until we all win,” she reflects. “If I were asked, Hey, Yvette, can we put these people in front of you because they do have needs that are maybe more immediate?, I’d rather be the one to say yes.” As an advocate, though, Yvette sees herself as an example. As such, it seems there should be enough resources to help her and people like her in kind. Yvette wants to be able to go into the places where she serves and say the system works, to keep spreading hope. “I’m different, not less,” she says. “I want to believe in a system that’s believable. I just want to be able to tell a better story.”
Writer: Shannon Turner, Photographer: Lynsey Weatherspoon