An Interview with Louisiana Disability Rights Advocate Ashley Volion
I am thrilled to learn that this Sunday morning MNSBC, in a segment on “Melissa Harris-Perry,” will share Ashley Volion’s inspirational story with the rest of the nation. Ashley, for those of you who don’t know, is a 28-year-old academic professional and adjunct professor with the Texas A&M system. After earning her undergraduate and master degrees, Ashley remained in academia, researching and writing, among other things, an insightful study and thesis on sexuality.
Ashley has a physically debilitating form of cerebral palsy. She lacks the physical strength to pull herself over, but trust me: During the last few weeks, through the sheer force of her own will, Ashley has been pulling herself up- speaking truth to power, mobilizing thousands from all over the country to join in her support and in the support of disabled students just like her. As I’ve said before, it is a story that needs to be told.
We’ll try to get an audio interview soon, but until then, this’ll do:
Lamar: Ashley, first, I want to commend you for your willingness to share your story. As you know, like you, I have also lived with cerebral palsy for my entire life, and your story resonates with me personally and profoundly. When did your family realize that you were disabled? How does your disability affect your daily life?
Ashley: I was diagnosed with Cerebral Palsy when I was a year old after my parents took me to numerous doctors because I was not holding my head up or crawling at that age. Honestly, I could not imagine life without CP. It has given me my strength and a sense of community. It has also presented me with my greatest challenges.
My disability affects every part of my daily life. I need help with all my daily basic needs such as, toileting, cooking, cleaning, transferring in and out of my chair, bathing, and transportation. With all that said, I depend on my attendants to function in and make my everyday life possible. I am employed as an online Sociology instructor at Texas A&M Central, I am an advocate, and maintain an active social life. Every aspect of my life is affected and/or is inspired by my disability.
Lamar: You are now a 28-year-old college professor who aspires to earn a Ph.D. in Disability Studies. Some people may wonder why you need government assistance to help pay for your personal care attendants. Given your education and your accomplishments, they may assume that you should be able to provide for your own care. How do you respond?
Ashley: would say look at my paycheck and do the math. I make just over $500 a month from Texas A&M Central along with SSI and SSDI. However, I require 24 hour care. At $8 an hour, in order to pay my attendants I would need to make $5,760 a month. This does not include any other expenses.
Lamar: You’ve spoken before about the ways in which government assistance programs for the disabled trap people into cycles of dependency. I certainly understand this personally, but for those who may be skeptical, can you explain what you mean?
Ashley: I will give you an example. In order to pay for my attendant care, I would have to come up with $70,080. You can check the math if you would like. My attendants get $8 an hour X 24 hours a day X 365 days a year. This would mean that I would have to make close, if not, $90,000 a year to support myself.
With that said, to qualify for the NOW Wavier, one cannot make over $2,000 in accumulated resources per month. If I need to make $5,760 in order to pay for attendants alone, how will I even begin to survive? So, yes I feel as if, as disabled people, we have to pick between a real income and our health and safety. So, my question is why can’t we have a system where people with disabilities can pay a certain percentage of their care according to how much one earns?
Lamar: To your knowledge, are there any laws in Louisiana that prohibit funding personal care attendants for Louisiana residents who want to earn a college degree at an out-of-state university?
Lamar: So, it seems a little ironic: These programs aren’t about providing disabled Louisianans with the ability to become independent; they seem to be designed to ensure that people remain wards of the state. You’re not allowed to get a quality education; you’re prohibited from making more than $20,000 a year; you can’t even save more than $2,000. If you dare to become self-sufficient, then you risk losing all of the care and services upon which you rely to function independently. I’ve heard and read a lot about people in this country who allegedly voted for certain politicians simply because they love getting “free stuff” from the government. Some people may read your story and think that you’re motivated by the same desire– that it’s about “free stuff.” How do you respond?
Ashley: Lamar, I just cannot believe that people would even begin to say thing like that. However, I have heard the same sort of comments directed to others throughout this presidential election and it’s just sad. I do not want “free stuff.” I want to be a contributing member of the economy. However, I should have the right to health and safety. Everyone should have the right to life.
Lamar: Ashley, you already have made Louisiana proud. And despite the fact that Governor Jindal’s administration, his attorneys, and his administrative law judge have spent thousands in taxpayer dollars and countless hours to reject your request to allow you to attend graduate school, you have remained a steadfast advocate for the people of Louisiana. You may not say this, but I will: Governor Jindal’s administration is shameful. They should be proud of you; they should celebrate you as an example of tenacious success. Instead, they seek to marginalize your life’s work, and in so doing, they are not only preventing you from becoming more successful and self-sufficient; they are also ensuring that the next generation of kids like us are also deprived. What sustains your belief in Louisiana?
Ashley: The people. I remember going to Children’s Hospital as a kid and seeing people like me. My family taught me that I could do and be anything I want to be. I want that for everyone. I want children with disabilities to know that they can be anything they want to be despite their diversity. Look at Tammy Duckworth in Illinois. So in short, people with disabilities, family, and friends give me my faith in Louisiana.