"The World is Missing Out on a Whole Lot" - Conversation with Disability Rights Scholar Ashley Volion

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 yesterday, 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 her experience growing up in Lafitte and 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 life, where you grew up, what that was like?

I grew up in Lafitte, Louisiana. I went to school in Marrero at Estelle Elementary. I had friends at school that were in wheelchairs, but at home it was a different situation. I love the Lafitte community. But growing up I was the only one in my community that was in a wheelchair for a long time. I didn't really have a connection with many disabled people. As I got further and further in elementary school, I started to be involved in Special Olympics, and things like that. And that was a big help.  That’s part of the inspiration for me to create a non-profit, by and for people with disabilities, where we can connect and support each other.



To say more about my life in Lafitte, I can't say anything but good words about it. It's a very tight knit community, everyone looks out for each other. There's just this big community bond that if something happens you always know you can call on the next person or your neighbor or something.  And so I think Lafitte helped me a lot in terms of seeing what a community is like and seeing the positive effects of that. 

Lafitte was hit really hard by Isaac, and seven years ago they were totally inundated by Hurricane Rita. Lafitte is a working class community, people there don't really have a lot of money, but after those hurricanes the whole community picked back up and helped one another and got what they needed going. Lafitte showed me a lot about strength and resilience. That's where I really learned about fighting for what you want and perseverance. That was given me at an early age. I knew I wanted to teach, and a lot of that came from my community members and their perseverance. I knew I wanted to do something big and give back. They still hold my heart.



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 nonprofit 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.

I want to do like a help / helper directory, that you can register on both if you have any resources to share, whether it be editing papers or tutoring, and if you need services, like cleaning your house. 

Right now those are the main ideas for my nonprofit. That's my dream.
 
Q: Tell me more about you academic work and how a Ph.D. fits into this dream?

I’ve received a bachelor's and a master's in sociology, with an emphasis in disability and sexuality. Because growing up I've found that even in sex ed, as a disabled people we were never taught about our bodies and how they function, or that they even function differently, or that even though they function differently, they still function. And we just had to learn about it ourselves.


My masters thesis was entitled "Everyday Lived Experiences and the Domain of the Sexual: As Told by Four Physically Disabled Women." I focused on these women’s ideals of themselves as sexual beings and how those ideals changed throughout the course of their lives. Growing up with a disability, I knew first hand how perceptions can affect our ideas about our own sexuality. I wanted to do something with people with disabilities to help them learn more about their sexual health and their bodies and give them a voice. Everything I'd read up until then – and this has been changing a little – was focused on what other people thought of disabled people and their sexuality, but I wanted to do it based on our perspective.



I'm hoping to complete this Ph.D. program and bring back to Louisiana ideas not only about disability and sexuality, but ideas on how to make people with disabilities feel more included.

Q: It sounds like you our own sexual identity and experience as a person with disabilities has a lot to do with the academic choices you’ve made. 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.

I'm an intersectionality theorist; I love it. I think there's also a lot to say about just walking into a room with all of your identities, because I could never enter a room and just be the disabled woman, or the queer woman, or the woman of color. I think if we all banded together under one front we could learn from each other. I don't necessarily know how to get all that together or what that would look like per se, but I think there's a lot that can come.

Q: Will you talk about what kind of access and services there are in Louisiana specifically, compared to other places?

Actually when it comes to services, I receive 24-hour NOW (New Opportunities Waiver) waiver services that fund my personal care attendants, and allows me to live independently. But throughout all my research, I have not found a lot of other places that actually have such an extensive amount of care. I would like to commend Louisiana on the care I’ve gotten so far.

But at the same time I know there's a long waiting list, and I was told waivers like the one I have do not exist any longer. We don't know what's going to happen with all these budget cuts that Governor Bobby Jindal is proposing. I know a lot of services are getting cut. So that's another reason why I'm fighting to keep my care here in Louisiana, because if I was to give it up, I don't know if I would be able to get it back when I return. Illinois (where my Ph.D. program is) doesn't provide the same extensive amount of care.

In terms of access, in New Orleans alone, the buses are getting better, but I can't get off and on most of the sidewalks in my wheelchair. Sometimes I have to roll in the streets. Access to buildings is very limited here. I think it’s because of our limited access that people with disabilities are not as much of a cohesive group in New Orleans and in Louisiana as in other places.
 
Q: Can you talk more about what independence means to you?
 
Independence means everything to me. Having independence allows me to work and do community activities, do what I want to do. For instance, I teach. I am an online sociology instructor through Texas A&M Central.

Independence means having control of one's life. Even though there's a lot that I can't do for myself physically, I still have a voice. Having a voice is part of my definition of independence more than anything. Having control.
 
Q: How do disability issues and rights and access connect with some other issues, like environmental justice or any of the other social and racial justice issues that people are fighting for in New Orleans and on the Gulf Coast?

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.



From an environmental standpoint, if we're isolated and left in poverty, our environmental conditions are not the best. I think rights and access for people with disabilities connects with everything, all these issues the Gulf Coast is facing. We just all need an equal chance.
 
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.

When politicians think about cuts in health care, what they fail to think about is that nobody, not even able bodied people, are healthy our entirely lives. Having an able body is a lot of times temporary. Politicians and people and advocates just need to think, what would they need and what would they want? Because one day you might need the same type of care that I need now.



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: For Gulf Coast organizers who are working on other issues, do you have any message for them about how they can ally with disabled people on disabled rights and access issues?
 
It's not only a question of how able-bodied organizers can ally with us, but it's also how we can ally with them? We are fighting for access for everyone, and each issue affects another. As disabled people, as social justice activists, as environmental justice activists, we need to be constantly in the faces of our politicians - lobby and rally, and do more hands-on things. We need to make ourselves heard, no matter what the issue may be.

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. My family and I are starting fundraising efforts as well. My dream will not be stopped! 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. 

You know, I've read a lot about isolation, discrimination, and I've even faced some, but I've never thought for a million years that if I worked this hard for something that I would be denied access to it. So I will fight this until I get my Ph.D. Growing up, the one thing that my parents would constantly tell me is that I was hardheaded and I didn't take no for an answer. I'm not going to take no now.

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Ada McMahon is a Media Fellow at Bridge The Gulf (www.BridgeTheGulfProject.org), a community journalism project for Gulf Coast communities working towards justice and sustainability.  She previously worked as a blogger and online organizer at Green For All, a national non-profit that fights pollution and poverty through "an inclusive green economy".  She is from Cambridge, Massachusetts, and currently lives in New Orleans, Louisiana.