Louisiana native Ashley Volion, whose experience living with cerebral palsy inspired her to seek a Ph.D. in disability studies, has plans to open a nonprofit focused on the sexual health of people with disabilities. After getting accepted to a Ph.D. program at University of Illinois in Chicago, Ashley’s dream was put on hold when Louisiana’s Department of Health and Hospitals denied her request to receive care during the program. Melissa described why in her Sunday Footnote:
To live independently, she requires the assistance of personal care attendants. Those attendants are supplied to Ashley through the state of Louisiana’s New Opportunities Waiver. It is one of the most extensive disability services programs in the country and it makes a difference. It helps Ashley be the accomplished young woman she is today. But the state refuses to allow Ashley to transfer these services with her to Illinois where she has been accepted into graduate school. UIC agreed to defer her acceptance for one year as Ashley appeals the decision by her home state to refuse her to take her vital services with her.
Ashley is now sharing her story to fight for her right to pursue her doctorate degree, and to advocate on behalf of people with disabilities for better access to care. Here is my interview with her.
Lorena Ruiz: Please tell me your story.
Ashley Volion: I’m 28 years old, and I’m from Lafitte, Louisiana. I was the only one in town for a while with a physical disability. I didn’t go to school down in Lafitte until I was in the sixth grade, because early on the schools didn’t have elevators. What I always wanted to do, along with teaching, was to open a nonprofit for people with disabilities dealing with sexual health because growing up and being the only one in my town–well, what felt like the only one in my town–with a physical disability, none of the sexual education programs were really geared towards me. I didn’t really know how my body functioned. I had a real disconnect with myself and my disability. And I kind of hated it for a while because I didn’t really understand it.
I came across the University of Illinois at Chicago (UIC) because I was looking up disability studies programs around the country. So in 2010, right after I graduated from my master’s program, I started applying to UIC. However, I didn’t get into the program that time. The main thing was my GRE score. So I took the test three more times and raised my score. I even kept in touch with the admissions coordinator; I made sure that he knew who I was. I took notes of every conversation we had, and I took every bit of criticism and used it to my advantage.
I applied again to the university, and I was accepted. I received the letter on March 7, 2012. As soon as I received it I was ecstatic. In April I was asked if I had submitted a request to utilize my services while in school in Chicago. I said I did not because I was unaware that I would have to do that. It was my assumption that, because it was my number one goal with the Comprehensive Plan of Care (CPOC), that was all I had to do as part of the process. So I wrote them a letter, as I was asked to do, and I sent it off.
I was supposed to leave to go to Chicago in June. My plan was to get into my apartment, and my two personal care attendants planned on coming with me for a month each to help me get set up, look for new personal care attendants, and show the new personal care attendants what they needed to do. They wrote letters committing to this. Two days before I was supposed to leave by train I received notification that my request would be denied. It would be approved for 30 days, but after that it would be denied. I decided not to go after being told this. In July I was sent a letter saying that my request was denied, that my time in school was not a time limited situation, so I was denied. I appealed that decision, with the help of the Advocacy Center. My appeal date – it wasn’t in court, it was by an administrative law judge – my appeal date was in August, and school began on August 27. That appeal was denied. I didn’t receive that denial until a week about school started. So I was forced to defer my acceptance, because I didn’t have the attendant services that I needed in order to go to school out there. I couldn’t afford to pay for it on my own.
LR: How did you feel knowing that you couldn’t start school this year?
AV: I feel really trapped right now, to be honest. They’ve put me in a very hard situation. I can’t afford to pay for services on my own. And if I was to… even the one year requirement (to become an Illinois resident and then be able to qualify for services there), even if there wasn’t a one year requirement, the waiting list for attendant services is so long that when I would get back to Louisiana I wouldn’t probably have a spot, and I would probably have to get to the back of the waiting list. I heard that the waiting list was currently around twelve years.
My parents aren’t that old. My father is around 50, and my mother is disabled as well. If I would have just left, there wouldn’t have been anyone to take care of me, especially seeing that my parents are getting up in age. My sister just had a baby, and my little brother works, so I really didn’t have a choice.
LR: As far as other aspects though, did you get scholarships to UIC? Were most of your other costs covered?
AV: Along with my acceptance I was awarded a graduate assistanceship through the school, and that would have covered my tuition costs, and it came with a stipend every month that would have covered my costs.
LR: So this was the last piece of the puzzle.
AV: Yes. The last piece, but the most important piece. Without them I couldn’t live there.
LR: So what’s next? What’s your plan?
AV: My plan right now is to work on getting the state to reverse their decision, and I started an Indiegogo site to start raising funds in the interim. But I will keep on fighting until this becomes a possibility for me. This is not only important to me, it’s important to the whole disability community, because this is saying to the disabled community that, because you might be disabled, you’re not worth doing anything more with your life. So I want to do this for everyone because I don’t want anyone to be in the same situation as I am.
LR: So the Ph.D. you see as necessary for both becoming a professor and for opening the nonprofit you mentioned?
AV: Yes, because UIC is well known for their research and the fact that they do hands on projects along with the research. I think it’s necessary in order for me to reach the largest amount of people that I can.
LR: I read in your posts that in addition to your physical disability, that you are also a woman of color who is queer. How do you see this affecting your situation?
AV: It impacts everything because, you know, those are things that everybody in each one of those groups needs to know about each other because we are marginalized and we need to stand together. Strength in numbers. And each part of me brings me strength. It affects each part.
Read more about Ashley’s story here.