Columbia resident Rene Powell spoke with her friend Traci Wilson-Kleekamp about what life has been like with a disability. They also spoke about how life has changed for Rene as her disabilities have become more visible - as she started using a walker recently to assist with her mobility.
Missouri Health Talks gathers Missourians’ stories of access to healthcare in their own words. You can view more conversations at missourihealthtalks.org.
Rene Powell: I was sort of born stubborn. I have been told that a time or two that I was a little bit of an oppositional toddler and child.
Traci Wilson-Kleekamp: No way.
Rene: But my Mom has told me since then that she really appreciated that aspect of my personality when she saw how much it helped me pursue the healthcare I needed because that was a challenge.
Traci: I don't know how invasive it is to ask about insurance and how that works and getting the right doctors - How did that work?
Rene: Well, I was really very lucky that there was an epileptologist [doctor who treats epilepsy] that he accepted Medicare and Medicaid because that was my only insurance option.
I knew the phrase “pre-existing condition” from a very early age because I knew I could not buy insurance, except for a very expensive policy.
So at first it was because my medicine was $50 a month, and I could do okay, and then later on when I started having a lot of emergency room trips and switching to newer medicines, it got to be a whole lot more expensive.
Traci: So what kind of barriers did you face because of all of this happening to you?
Rene: Well, one interesting thing is I don't consider my health itself to be a problem. It's my body doesn't cooperate with me.
Rene: Necessarily. It doesn't do what I - Or it does things I don't tell it to you, as far as tensing my muscles up.
Traci: Okay. Involuntary movements.
Rene: And so physical access has become an issue.
Rene: And also visibility. The epilepsy was not noticeable unless I had a seizure. So they're two very different experiences.
Traci: Tell me how those two - the visibility part - how it affects you? And the physical part?
Rene: Well, it is very different in that there are things that I'm discovering that I've been told about. I sort of figured out now that's what that pity stare looks like.