Year of the tiger, p.7
Year of the Tiger, page 7
ARTWORK BY LIZARTISTRY
Excerpt from:
The Olmstead Decision and Me
Disability Visibility Project blog (June 27, 2019)
Before I start, I want to acknowledge the people who lived and died in institutions—we’ll never know their stories or their names. I want to acknowledge the people currently in institutions against their will, who are at risk of abuse and neglect, and the people struggling to live in the community who have unmet needs, who are on waiting lists for Long Term Services and Supports and housing.
I also want to be up front about myself. I have never been institutionalized, but I am a person at risk of institutionalization. On paper I am someone with “severe” disabilities who has high care needs. Every day I rely on someone to get me out of bed and dressed, to help me in almost every aspect of my daily activities. The 1999 Olmstead decision has had a direct impact on my life because I am on two programs: a Medicaid Home and Community-Based Services (H.C.B.S.) waiver and In-Home Supportive Services (I.H.S.S.), a state program that provides personal assistance services. These programs provide the hours of care and services I need to remain in the community and out of institutions.
I am so thankful for what the disability community has achieved in the last twenty-nine years with the A.D.A. and twenty years with the Olmstead decision. I owe a lot to Lois Curtis and Elaine Wilson, the plaintiffs in Olmstead v. L.C., 527 U.S. 581, and everyone who came before and after. But I am also very salty and frustrated at the outright attempts to weaken regulations and programs that are vital to our civil and human rights. So I’m gonna get real with y’all.
An I.H.S.S. notice of action from many years ago. All participants are reassessed annually. The form includes a table containing categories of tasks I need help with. Columns list the time I need for each task, any adjustment from the previous year, and the final authorized amount broken down into hours and minutes. For many years, I received 283 hours of care per month—the maximum. When I worked as a staff research associate at the Center for Personal Assistance Services, I got to conduct qualitative research about disability and tried to ground some of our policy work in the lived experience, including my own. This assessment form is an example of the bureaucracy of care and what I call the work of disability, a concept that emerged out of my time as a researcher. Thank you, sociology!
A notice of action from the 250 Percent Working Disabled program from 2010, which states a change to the monthly premium of twenty-five dollars I need to pay in order to remain on Medicaid, also known as Medi-Cal in California. I had to report changes to my income promptly in case it affected my premium. This is another example of structural ableism, where disabled people have to jump through inordinate hoops just to work without risking access to critical services they need to live.
While I have help that I need, it’s still not easy. The struggle is real when it comes to surviving and remaining in the community. I feel very vulnerable and know that I’m one crisis or policy change away from institutionalization. This is the lived reality of a lot of disabled people like myself. This vulnerability extends to the systems and policies I’m enmeshed in.
Bureaucracy and labor involved in participation in programs. I have to check in with a social worker every six months for a plan of treatment as required by my waiver and an annual redetermination for Medi-Cal, which is Medicaid in California. There’s always a need to verify and document my needs for these services.
Poverty trap (Medicaid) asset/income limitations. Did you know I can have only two thousand dollars combined in my checking and savings as of 2020? I’m in the community, but am I really in the community? Do I have opportunities to grow like other nondisabled people? Nope.
All these realities are anxiety producing, especially when there’s a mix-up or a delay. I’ve also had years when the state required additional paperwork and requested my medical records after a redetermination. It is hard to describe how on edge and frantic I feel when gathering, printing, scanning, and mailing this information. The work of disability never ends.
There’s a long way to go to truly fulfill the spirit of the Olmstead decision. Aside from my experiences, here are a few broader examples of challenges many disabled people currently face in the United States:
Freedom to move from state to state. Many disabled people like me have to think twice before moving because of the variation in Medicaid L.T.S.S. services by state.
Institutional bias. States that receive funding from Medicaid are required to provide institutional care, but H.C.B.S. is optional.
Subminimum wages. Did you know that the Fair Labor Standards Act allows some employers to hire disabled workers and pay them below minimum wage, sometimes one or two dollars an hour?
Cuts by states. Anna Landre is a student at Georgetown who almost had to drop out of college because the State of New Jersey cut her daily hours of personal assistance from sixteen to ten. The difference of six fewer hours of care is significant. She had to fight really hard, using social media, to get this resolved, but it was an extraordinary effort. And there are many people like Anna who face these types of barriers and who just want to live their lives and pursue their dreams like everyone else.
These are all systemic barriers rooted in ableism, the idea that disabled people are incapable of making their own decisions or living independently with support, or that they don’t deserve the same freedoms and rights as other people, such as opportunities for marriage, employment, and education.
This leads to another aspect of community living that’s not talked about enough, and that’s civic and political participation. There are still significant barriers disabled people face in civic and political participation: for example, voter turnout of disabled people is lower than nondisabled people. But this goes beyond voting and its embedded physical and social barriers—it’s about being welcomed and valued, being able to show up, being involved with your local government and community organizations; it’s about advocating for what you care about. In fact, a report by the Miami Lighthouse for the Blind and Visually Impaired discovered that every website for the candidates running for president in 2020 was inaccessible for blind people. Yeah, that’s right. How basic can you get?
People sometimes say, “Oh, Alice, you’re so amazing,” and I’m like, “Yeah, yeah, yeah, whatevs…” (eye roll). But you know what? I want people to expect me to be in the same spaces as them, but the expectations are so low. People still find it exceptional or surprising that disabled people have children, or careers, or amazing talents, or wild adventures. This is both a cultural and political problem. And this is why visibility and representation are so important to me.
What does community living look like for me? If I want to eat ice cream for dinner, I will. If I want to stay up until 4:00 a.m. (which I often do) and watch Netflix nonstop, I’m gonna do that, because this is my life, damn it! This is what community living means to me. Until every disabled person can live the life they truly want, the fight isn’t over by a long shot.
ARTWORK BY LIZARTISTRY
#CripTheVote
THEN AND NOW
Discussions with guests Andrew Pulrang and Gregg Beratan on the Disability Visibility podcast, episodes 1 and 99 (September 13, 2017, and March 21, 2021). These conversations have been condensed and edited for clarity.
ALICE WONG: Hey there. Welcome to the very first episode of the Disability Visibility podcast, conversations on disability politics, culture, and media. My name is Alice Wong, and I am honored to be your host.
With a gazillion podcasts out there, you might wonder, Why this one? Why now? The short answer is I don’t see shows about disability culture and politics by N.P.R. or other major media organizations, and there are not that many around. The revolution is here. One podcast, one transcript, one tweet at a time.
Today’s guests are Andrew Pulrang and Gregg Beratan. The three of us are copartners in #CripTheVote, an online movement encouraging the political participation of disabled people.
This episode was recorded in July, days after the Republican health care bill died in the Senate. We look back on the attempts to repeal and replace the A.C.A. [Affordable Care Act], what Medicaid means to disabled people, and the activism that took place all year long in opposition of the bill.
So let’s talk a little bit about disability activism this year, especially about the G.O.P. health care bill that was in the House, that’s known as the A.H.C.A. [American Health Care Act]. Then it became the B.C.R.A. [Better Care Reconciliation Act], and then it mutated into this O.R.R.A. [Obamacare Repeal Reconciliation Act]. We are talking today on July 29, 2017, and just two days ago, the bill was killed in the Senate. How are you two feeling about the political roller-coaster ride, what you observed, and what you experienced?
GREGG BERATAN: Can we just start by saying let’s hope it sticks this time?
ALICE: Yeah!
[Gregg laughs]
ANDREW PULRANG: I agree. I was gonna say that’s one of my reflections, is that I think that this is probably gonna be something we’re gonna have to deal with in some way for at least another couple years, probably, off and on. It feels like we’ve reached a threshold or a certain turning point, but that doesn’t mean it won’t come up again.
ALICE: And also, we have to keep in mind that legislation isn’t the only way to dismantle Medicaid or other safety net programs. There’s a lot of decisions that can happen from C.M.S. [Centers for Medicare and Medicaid Services] and other departments. So we all gotta be vigilant on that. I definitely think that what we’ve seen in terms of people sharing their Medicaid stories, that it’ll still really be needed throughout the entire four years…hopefully just four years. But yeah, I think that it’s been really a great awakening in the sense that finally, nondisabled people have a little sense of what Medicaid is, what it does, and just how many people it touches.
ANDREW: Yeah, no, I agree. Six months ago, I would not have said that there would be as much support for Medicaid as there is right now. And not just with the disability community, but overall. I think what you just said is correct that people have woken up to realize that Medicaid is a thing, and it’s a thing that people actually like and appreciate. It’s not some sort of crappy, expensive entitlement that nobody really likes. People actually appreciate it. And of course, we have things that we wanna change about it, but [there was a perception that people on Medicaid despised it] and wanted to get off it as soon as they could kind of thing. That’s just not really the case. Surveys show that people who are on Medicaid are overwhelmingly happy with it. And that half the reason that people don’t like the marketplace exchanges is because they’d rather be on Medicaid, you know, than pay through the nose for a sort of half-hearted private plan.
ALICE: Mm-hmm. And I think it also speaks to one of the reasons why people are satisfied or happy for Medicaid, is because they know so many people that aren’t insured or [are] discriminated against because of their preexisting condition. And that we still live in a country where health care is not guaranteed for every single person. So of course we’re gonna be very thankful and reliant on Medicaid, because we’re still not at that point where everybody’s covered. I really appreciated these stories about how Medicaid really supported people in education, in public schools. People did not realize the reach of Medicaid beyond poor and disabled people.
ANDREW: Right.
ALICE: I think that’s another thing that, “Oh, my parents might be in a nursing home!” Like that might be a risk. Or these kids who need services at school. It’s like, oh! Kind of broadening the base of the reality of Medicaid, which I think, in a way, was good. It was good in terms of getting nondisabled people engaged and aware that it’s important to everyone.
GREGG: Yeah. I think one of the heartening things has been seeing people realize what value Medicaid adds to our society, that people are able to work and live and raise their families, go to school, give birth to healthy kids, because of what Medicaid provides. And I think in that way, Andrew, you’re right: it helped Medicaid reclaim its good name. I mean, as you said, no one has been more critical of Medicaid’s flaws than the disability community. But we were never advocating doing away with it but fixing it.
ANDREW: The Republicans, I think, have made a mistake in thinking that complaints about a system mean they have a license to just tear it up, and I just think they’re finding out that they kinda don’t. [chuckles] Hopefully.
ALICE: Well, right, in the sense that they wanna tear it up and not really even have a plan for something that’s similar or comparable or better. I mean, that was a huge, huge, huge red flag, and I think clearly, people saw through that.
GREGG: I think they put their dreams of serving a certain constituency ahead of serving their whole constituency. That’s never a good recipe.
ALICE: Well, yeah. I mean, look at Senator [Mitch] McConnell and Kentucky. Kentucky has so many people that need health care.
GREGG: Yes.
ANDREW: Well, that’s the hard, hard kernel that we may never fully crack, which is there are people who fundamentally need these things. But for a variety of reasons, they sort of, on a level, despise them. So you get lots of people in places like Kentucky who gripe and moan about the fact that their neighbors get Medicaid and they don’t, or this person gets Medicaid and shouldn’t. And they complain on that moral plane about freeloaders and all that stuff. And then the politicians take that and say, “Okay. So clearly my people don’t like Medicaid.” It’s not quite that simple. Even if people make these sort of really disgusting comparisons and criticisms, that doesn’t mean that they don’t need it. If they could get their heads around it in a different way, they would probably support it.
ALICE: Well, it’s also funny that there are those folks all over the country—not just in the middle of the country, not just in the South, but everywhere. They don’t realize that the plan that they’re on is funded by the A.C.A.
GREGG: The interesting thing for me, Alice, you mentioned people not realizing they’re on A.C.A.-funded plans. I think part of what we’ve seen is people start to realize that they are and that people they know depend on Medicaid across the country. And that’s why we’ve seen so many people come out. I mean, there were protests in thirty different cities.
ANDREW: That’s fantastic.
GREGG: Isn’t it?
ALICE: Yeah, and also the whole idea, the aspect of the resistance, is that all three of us are on Twitter. We’ve seen just so many different ableist comments about Trump and the way they’re talking about the issues. And that in itself is problematic and just goes to show how far we need to go. And the fact that most of what we see in terms of disability activism is just very substantive. It’s got the bigger picture versus this cult of personality.
GREGG: And we’ve gotten to see that close up. I mean, the fact is #CripTheVote could’ve easily degenerated into “I like this politician and I like that politician,” but it never did. I mean, to the community’s credit, everyone, almost without exception, kept it on the issues, whether it was during debates or whether it was one of the chats we had on a particular topic. It never devolved into partisan crap, or it was always about how this will affect our community.
ALICE: Yeah, I mean, we’ve been at this now for—talking July 2017, so it’s about…we’ve been in existence for over a year and a half. Originally, we were gonna wrap it up after Election Day last November. I’m so glad that we decided not to, that no, that there’s still a huge need for it, and it’s only gonna continue onward. It’s much more than just about voting; it’s about political participation. It’s about having a voice. And it’s also about just having a space for conversations.
For the listeners who don’t know about #CripTheVote, most of our activities are on Twitter, and we have about once a month, roughly about once a month, a Twitter chat about some sort of disability issue.
So just what were some of the highlights that you both wanna recall from our last four chats?
ANDREW: I think, more than any particular chat, what sticks in my mind is that we’re continuing with these topics that some of them aren’t really on the front burner otherwise. With our chats, we would take a little time each month to look at a topic that’s important but maybe has fallen off the radar. And I think that’s really important going forward, because there’s all kinds of issues that matter to our community that aren’t necessarily burning right at the moment, but they could be at any time.
GREGG: I mean, the one on the media, I think, was kind of amazing for me, just seeing the outpouring we got. People were—there was a lot of frustration that people seemed to finally be able to give voice to.
ALICE: I agree. I feel that way about the death penalty chat, because, I mean, similar to Talila A. Lewis, who also guest-hosted our chat last year on mass incarceration, I feel like I am still really shocked that the death penalty issues are not a priority within the disability rights community.
ANDREW: And that’s an evolving process for a lot of people, evolving from thinking of disability as a fairly simple and narrow range of issues to being something that relates to a huge tent of issues.
