Ada McMahon

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

2012-11-02T12:50:02-04:00

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.

After Tornadoes, Rural Disaster Area Faces Relief Challenges

2011-05-24T12:22:35-04:00

On a beautiful late afternoon in early May, Dedrick Benison and Michael Calvin are quietly surveying the house that came crashing down around them just a week before.

On April 27, they were watching a movie at their neighbor's house on the catfish farm where the men live and work near Forkland, Alabama. Moments later, a tornado collapsed the roof and ripped off the kitchen wall, sending furniture and splintered wood flying. The men scrambled out of a living room window to escape. As terrifying as it was, the evening could have gone much worse for the roommates.

We walk no more than 30 yards away, to all that's left of the small two-bedroom they shared -- the house where, if they had not made a seemingly mundane decision, they would have been that evening.  

"This is the house," Benison, 31, points to its tile-floored footprint. "This is the sides and top," he gestures towards a mound of debris piled a couple of feet away, once a roof, walls, and furniture. 

Ethel Giles, a neighbor and community leader who is there to deliver donated supplies, states the obvious: "Good thing you felt like watching a movie."

Calvin, 26, expresses a similar sentiment -- gratitude for merely having survived. "It just breaks my heart," he says "But I'm still here. I'm still here."

Ethel Giles and Dedrick Benison lean against what's left of Benison's house.

Still here, but left with no home, disrupted work (the catfish farm was wrecked as well), and not much by way of food or clothing. Benison's truck survived, but Calvin's was flattened.

For now, they're depending on government and private agencies like FEMA and the Red Cross, local community-based organizations, and on the generosity of family, friends and strangers, and people like Ms. Giles.

Ethel Giles has spent the day sorting and delivering toiletries, nonperishable food, diapers, and flats of bottled water, to 22 households. Five o'clock is fast approaching, and Benison and Calvin are her last stop in rural Greene County.

Ms. Giles still has a 50-mile drive ahead, to another rural community she's heard has been hit. Then it is back to Forkland, where her home was also struck by the storm.

Ms. Giles (left) delivers donated supplies to survivors of the 2011 tornado disaster in Tishabee, Alabama.

Ms. Giles works for the Federation of Southern Cooperatives to coordinate a local farmer's market, and manages accounting for the Federation's Alabama affiliate organization.

John Zippert, Director of the Federation, says their ongoing work to develop cooperatives and credit unions with farmers, fishers, and African American communities in the rural South is, "part of the civil rights and economic justice struggle."

For now and the foreseeable future, Ms. Giles and the Federation have been thrust into a critical role -- helping hundreds of people in small, rural communities in western Alabama get immediate relief and begin the long process of recovery.

When a massive outbreak of tornadoes riddled the South, beginning April 15 2011, and intensifying on the 27 and 28, Alabama made the news as the hardest-hit state. Tuscaloosa (population 90,468) became an emblem of the destruction. It was hit by a tornado nearly a mile wide.

At least 27 people died, and whole blocks were flattened. President Obama visited the city on April 29, saying, "I've never seen devastation like this," and declared a major disaster in the state.

The house where Dedrick Benison and Michael Calvin weathered the storm. They crawled out the window on the far left.

The widespread destruction and high concentration of hurting people in Tuscaloosa and Birmingham (the state's largest city) rightly attracted attention and resources. Big disaster relief organizations like the Red Cross, state and federal agencies, churches and faith groups, and nonprofit organizations responded by quickly setting up large relief operations in these urban centers.

It wasn't just Tuscaloosa, it wasn't just one tornado, and it wasn't just Alabama that was hit. According to the National Oceanic and Atmospheric Administration (NOAA), 305 tornadoes struck 21 states during the outbreak from April 25 to the 28, with more than 300 fatalities across Arkansas, Mississippi, Alabama, Georgia, Tennessee and Virginia.

The flow of resources is not reaching all affected areas in this widespread disaster zone, especially rural, impoverished communities in the Black Belt.

In a report on the disaster, the Federation of Southern Cooperatives explains the challenge:

"Areas in the Black Belt that are extremely rural, and seriously economically depressed ... are in danger of getting left out of the process of assistance ... Individuals [are] not able to get out of the community to various supply relief hubs to pick up relief supplies."

Map of some rural communities struck by tornadoes in western Alabama. Ms. McShan and Geiger appear in part two of this story.

In response to this need, Ms. Giles, the Federation, and other community-based organizations have emerged as critical bridges between resources and tornado victims in rural areas.

In the week after the disaster, things were not yet running efficiently. Ms. Giles and a few volunteers drove to Birmingham themselves to pick up the supplies for Greene County. The trip took nearly the entire day and yielded just a pickup truck and minivan full of supplies -- supplies that they quickly distributed the following day.

Even with piecemeal efforts like this marking the chaotic days following the disaster, the Federation says it has managed to supply 400 rural families in 8 communities with food, clothes, and other necessities.

It's a good start, but they have bigger immediate goals. One is to establish the Federations' Rural Training Center in Epes, Alabama, as a regional hub for disaster relief. Soon, they hope to have 18-wheelers filled with supplies headed to their facility, which is located in the midst of four rural counties that were struck by tornadoes.

With this relief supply chain in place, the Federation can focus on what they do best: working directly with rural residents to begin rebuilding lives and communities.

Originally posted on The Bridge The Gulf Project.
Read Part Two.

All photos and map graphic by Ada McMahon.

10-Year-Olds Challenge BP, and 4 Other Videos That Will Give You Hope for the Future of the Gulf Coast

2011-04-25T18:47:52-04:00

Last weekend in Washington, D.C., more than 100 Gulf Coast residents called for action from President Obama and Congress to make BP pay for its ongoing disaster, and to clean up and restore the Gulf Coast. The contingent was part of Power Shift 2011, a youth climate summit and organizing training, nearly 10,000 people strong. Watch the top five videos from the historic summit, as children, students, workers, advocates, and whistleblowers challenged big polluters and took a stand for America's Gulf Coast.

1. Children stand up to BP with a song

"I open my mouth to BP, and I won't turn back," sang three girls from Biloxi, Mississippi, in front of the BP lobbying headquarters in Washington, D.C.  

On Tax Day (Monday, April 18th), thousands of youth marched on BP's offices in Washington, and demanded they pay the $9.9 billion in taxes they are dodging by writing off loses from their own oil disaster.   The girls are from the group Coastal Women for Change.

2. Hundreds of youth shut down BP station

Tulane University student Stephanie Stefanski explains why hundreds of youth shut down a BP station on Sunday, April 17th, and why she drove 20 hours from Louisiana to Power Shift:

"There's still oil on our coast. I saw it two weeks ago, I touched it, I smelled it. It's still causing massive die offs with dolphins, sea turtles, crustaceans and fish. It's causing public health issues. I'm here to tell everyone this problem is still here one year later... They're not paying up for their damages."
Via Wonkroom

3. Cherri Foytlin rallies crowd of thousands outside White House

The mother of six and wife of an oil worker walked all the way to D.C. from New Orleans to raise awareness about the ongoing BP disaster. She told thousands of fired-up youth in Lafayette Park: "[We] have to have a future where greed is not the name of the day, where humanity comes first."

4. Clean-up worker Andre Gaines exposes BP health crisis, contractor corruption

"They told us... we don't need respirators... But I'm living proof. I have watched people falling over, holding their chest, [they] cannot breathe from this stuff... This stuff is killing people." Andre Gaines, 27, was one of six clean-up workers from Mississippi who spoke out about widespread illnesses, corruption, and negligent safety practices associated with the disaster clean-up.

5. Environmental Justice leader Michele Roberts tells 10,000 youth: "Stand for the least of these."

Michele Roberts of Advocates for Environmental Human Rights talked about legacy pollution issues persisting in Mossville, Louisiana, and in communities of color and poor communities across the country:

"Did you ever think about the many people who are living in harm's way from legacy pollution? They tell me 9 out of 10 African American communities alone in America live in polluted lands. I'm from one of them."

Related Posts:

Crossposted from Bridge The Gulf

Oil Spill Commissioner Pledges to Address Health Issues

2011-01-18T11:12:00-05:00

Crossposted from Bridge The Gulf.

New Orleans -- In an emotional public meeting on Wednesday, January 12th, citizens from across the Gulf Coast urged the president's oil spill commission to help solve the growing health crisis here -- and got a pledge of support in return. Many citizens and non-profit groups praised and thanked the commission for its report on the BP disaster; but they also say it failed to adequately address health issues.

During the question and answer session, people from coastal communities across the gulf stood up with a common message: We need more than just a report, we need immediate help now to address an urgent and growing health crisis along the Gulf Coast.

"I really see no sense of urgency here ... Where is the sense of urgency?" asked Robin Young of Orange Beach, Alabama. "Is there anything being put in place? Has anyone talked about getting somebody on the ground now with a team of doctors?"

Dr. Riki Ott, a marine toxicologist who has studied and lived through the Exxon Valdez spill, estimates that four to five million gulf coast residents have been exposed to dangerous levels of oil and dispersants.

Cherri Foytlin is just one of those. The mother of six co-founded the grassroots group Gulf Change in response to the BP disaster. She recently learned her blood has alarming levels of ethylbenzyne, a chemical found in crude oil. Cherri made an impassioned plea directly to commissioner Frances Beinecke (who is also the president of the Natural Resources Defense Council), to be an ongoing advocate for the health of Gulf Coast communities, even though the commission has finished its job:

Cherri:

Today I'm talking to you about my life. My ethylbenzyne levels are 2.5 times the 95th percentile, and there's a very good chance now that I won't get to see my grandbabies.

What I'm asking you to do now, if possible, is to amend [your report]. Because we have got to get some health care. I have seen small children with lesions all over their bodies. We are very, very ill. And dead is dead. So it really doesn't matter if the media comes back ... or the president hears us, or ... if the oil workers and the fishermen and the crabbers get to feed their babies and maybe have a good Christmas next year. Dead is dead. I know your job is probably already done, but I'd like to hire you if you don't mind. And God knows I can't pay you. But I need your heart. And I need your voice. And I need you to come to that table. And I need you to insist that Feinberg and anybody else that needs to be in on that conversation comes too. And I'm asking you that today.   And I would like you to say yes to me today. While you look me in the eye, please say yes you'll come to my table.

Frances Beinecke: "Yes. And... I pledge that we will take [these health issues] back to the White House."

Cherri: "Thank you."

The commission was created by President Obama to investigate the BP disaster and make recommendations to guard against future oil spills. The final report was released Tuesday, and recommends an overhaul of the oil industry's safety practices and a new independent body to provide oversight. (Read more from Bridge The Gulf contributor Rocky Kistner).

Q & A With Reilly Morse, Attorney Behind Mississippi's Katrina Housing Victory

2010-11-20T18:16:23-05:00

North Gulfport, Mississippi - Last Monday, Governor Haley Barbour, HUD Secretary Shaun Donovan, and Mississippi housing advocates represented by Reilly Morse, announced a major agreement that makes $133 million available to assist low-income Mississippians in repairing their Hurricane Katrina-damaged homes.

The agreement was reached after five years of advocacy and a lawsuit brought by Mississippi community groups and residents against the Department of Housing and Urban Development (HUD).

The lawsuit contested HUD's approval of the state of Mississippi's plan to spend $600 million on expanding the port of Gulfport -- money that had been appropriated by Congress to rebuild low- and moderate-income people's homes after Katrina.

Bridge The Gulf asked Reilly Morse of the Mississippi Center for Justice, the lead attorney representing the Mississippi residents and advocates, about the victory.

Interview conducted by Bryan Parras and Ada McMahon. It has been edited for length and clarity.

Q: Can you tell us about the victory today?

A: This was a collaboration that was a mutually shared victory. We made space available for the state, and HUD, and us housing advocates, where we could really talk about the practical unmet needs. And it is always so hard when you are in litigation to get past the litigation and get into the practical problem solving. That was the real breakthrough.

For us it is very, very gratifying. It is also saddening, in that it is coming five years late. But the overall shape and size and direction of it is just what we had wanted.

Q: Why will this be more inclusive than the initial housing assistance programs [created after Katrina]?

A: The initial programs would not help folks who had hurricane wind damage.

You have historically racially segregated neighborhoods, and then you have a railroad which separates them, functions as a racial dividing line; And then you have a tidal surge that causes a lot of the damage, and if you're not touched by the tidal surge because you are on the wrong side of the tracks, you end up with no assistance.

So there were clusters of unmet housing needs, that were wind-damaged. They were predominantly low-income, they were predominantly African American. They're now going to be assisted.

But the other advantage of this is, this is not purely a racialized outcome, this is helping low-income folks of any form or description that need the assistance.

Q: Last question: How are you feeling?

A: I am having an out of body experience. It's been very, very strange.

It's been very, very difficult even up through the last week to get to this point. And we've done it, and it's a tribute to lots, and lots, and lots of people.

They put a person up at the front, but there were scores of organizations, hundreds of people behind those organizations. And it just, it's... it's just raw egotism to say "Reilly did this," it's not how this happens. It happens by people power.

See related post: Katrina survivors respond to news of new housing assistance in Mississippi

[Some other advocacy and community groups that helped bring about this victory include Mississippi State Conference NAACP, Gulf Coast Fair Housing, North Gulfport Community Land Trust, and the Steps Coalition. Please indicate in the comments if I missed your group!]

Originally posted on Bridge the Gulf.