'The World Is Missing Out on a Whole Lot:' Conversation With Disability Rights Scholar Ashley Volion

Nothing hurt this 28-year-old academic from Lafitte, Louisiana as much as having to defer pursuing a Ph.D. in Disability Studies in Chicago because Louisiana's Department of Health and Hospitals denied her request to provide care there.
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As a woman with disabilities -- she has cerebral palsy and requires the assistance of personal care attendants to live an independent life -- Ashley Volion is no stranger to isolation and discrimination. But as she wrote on Bridge The Gulf this week, nothing hurt this 28-year-old academic from Lafitte, Louisiana as much as having to defer pursuing a Ph.D. in Disability Studies in Chicago because Louisiana's Department of Health and Hospitals denied her request to provide care there.

In this interview, Ashley talks about how she draws strength from living as a queer woman of color with disabilities in Louisiana. She talks about why her struggle should matter to people with disabilities and able-bodied people alike, and her dreams for starting a non-profit for and by people with disabilities in Louisiana.

Q: Will you tell me a little bit more about your dream for what your non-profit would do?

I picture my non-profit having classes and workshops for people with disabilities, focused on their sexual health. I hope to get it to where it's all run by people with disabilities, because I want my non-profit to be by us, for us.

I want to set up peer mentoring, where people not only would be able to ask their mentor questions about their sexual health, but also questions as a disabled person in general. You'd be surprised the questions I had growing up. It can be the simplest thing like, where do you place your shoe to get it on? Or how do you button a button? And it's just nice to have someone around that could ask those questions. I want to be sure we focus on the queer community and young people too.

Growing up I didn't really have disabled friends. All my friends were able-bodied. And while they were great, there's certain things that they didn't know how to answer. They couldn't break certain things down to me. And so that's another goal of my nonprofit.

Q: Do you want to say anything more about how being a queer woman of color affects your experience as a person with disabilities, and how you bring intersectionality into your advocacy and scholarship?

The fact that I'm a queer woman of color -- I'm Filipino -- affects my experience as a person with disabilities greatly.

Sometimes with all of my intersections mixed together, it can become isolating. But I think all of my intersections put together give me strength. I think as disabled people, as queer people, as people of color, we all have to come together to help each other and to stand with strength and power. There's power in numbers. I think each intersection adds a different layer of what we have to deal with and we can learn from one another.

Q: How do disability issues and rights and access connect with some other issues, like environmental, social, and racial justice?

When looking at poverty statistics, disabled people are the poorest of the poor.

I did some rough calculations, and to pay for a whole year of care that I get, it would be over $70,000 a year. That would be just care alone, that wouldn't include my bills or anything else. In Louisiana, in order to be covered by Medicaid (which covers my NOW waiver), you can't have more than $2,000 collectively for one given month. You're not allowed to have any savings or grants above $2,000. So, we're constantly stuck in this inevitable cycle of poverty -- I need the assistance of personal care attendants if I ever wanted to afford paying for my own care, but I'd have to give up assistance if I started making more money. We're always told to be independent, but then we're not given the resources that we need to sustain ourselves. Right now it's just not possible. Because of our needs, we're stuck in this endless cycle.

Q: How do your story and the issues you're talking about connect to political issues on the national level?

The issues I'm talking about reach beyond people with disabilities, and are connected with national issues, especially health care. There need to be policies implemented that ensure that people with disabilities' health and safety are taken care of.

There also needs to be a push by the disabled community, and by everyone, for better healthcare, and better rates and rights for our personal care attendants. We depend on our personal care attendants in order to remain healthy. Without them, we can't do it. This fight can and should extend to all health care workers.

Specifically on the issue I'm facing -- trying to keep assistance for personal care attendants while I pursue education out of state -- there needs to be new policies put into place. If a person with disabilities wants to get an education, they should be able to get the education that they're entitled to. There could be compacts worked out in which states share the costs of care. The policy would work really well for both states. You know, in the long run everyone benefits. What it boils down to is the right to an education. If people with disabilities don't get the right to an education, then the world is missing out on a whole lot.

Q: What are the concrete next steps for you? Are you still fighting DHH on the decision to deny care at your Ph.D. program?

I'm fighting. I'm fighting every step of the way. The next step for me is going to legislators, the Governor, going to anyone who will hear me speak. I'll do whatever it takes. If I give up now it's just telling everyone that nothing that I've done up until this point matters. When this began it was about me, and this is still about me. But it turned into something way bigger for me. So I will fight this until I get my Ph.D.

A longer version of this post was originally published on Bridge The Gulf Project.

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