On June 26, 2019, I was on a panel hosted by The Kelsey, “Disability, Inclusion, and Community Life: A Conversation in San Francisco,” along with moderator Danh Trang and co-panelists Leroy Moore, John Marble, and Micaela Connery. Check out Shannon Des Roches Rosa’s recap of the panel and Q&A.
Here are my introductory remarks on how the Olmstead decision affected me and some links/additional info I didn’t get to share.
Share one way in which Olmstead has affected your life or your work
Alice Wong: Thank you to The Kelsey for inviting me to be on this panel. Please bear with me because I’ll be reading from my notes. 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 people struggling to live in the community who have unmet needs, such as waiting lists for Long Term Services and Supports and housing.
I also want to be upfront 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. Everyday I rely on someone to get me out of bed, get dressed, almost every aspect of my daily activities [for more, check out my radio story “Choreography of Care”].
Olmstead has had a direct impact on my life because I am on 2 programs: a Medicaid HCBS waiver and IHSS (In Home Supportive Services), 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 achieved in the last 29 years w/ the ADA and 20 years with the Olmstead decision. I owe a lot to Lois Curtis and Elaine Wilson and everyone who came before and after. But I am also I’m also very salty & 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 ya’ll.
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 & labor involved in participation in programs. I have to file a plan of treatment every six months for 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 only have $2000 in my checking and savings AND that I can’t make more than 2.5 times the federal poverty level? I’m in the community, but am I really in the community like other non-disabled people? Nope.
-All of these realities are anxiety producing, especially when there’s a mix up or delay.
There’s a long way to go to truly fulfill the spirit of the Olmstead decision. Aside from my own experiences here are a few broader examples of current challenges many disabled people face in the US:
-Freedom to move state to state. Many disabled people like me have to think twice before moving because of the variation in Medicaid LTSS services by state.
–Institutional bias: states that receive funding from Medicaid are required to provide institutional care but HCBS is optional.
–Subminimum wages: Did you know that the Fair Labor Standards Act allows some employers to hire disabled workers and pay then below minimum wage, sometimes $1 or $2 an hour? [For more, check out this documentary by Rooted in Rights]
–Marriage penalty: Did you know that people who receive SSI (Supplemental Security Income) can have their benefits reduced if they marry someone? Most people assume everyone has the right to get married and it’s not true.
– 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 16-10. The difference of 6 fewer hours of care means 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.
These are all systemic barriers rooted in ableism, the idea that disabled people are incapable of making their own decisions or living independently w/ support, or that they don’t deserve the same freedoms and rights as other people such as opportunities for marriage, employment, education.
This goes into another aspect of community living that’s not talked about enough and that’s civic and political participation. I’m a co-partner in #CripTheVote, a nonpartisan online movement encouraging the political participation of disabled people along with my co-partners Andrew Pulrang and Gregg Beratan. There are still significant barriers disabled people face in civic and political participation: for example, voter turnout of disabled people is lower than non-disabled people, there are still numerous physical and social barriers with voting.
This goes beyond voting–it’s about being welcomed and valued, being able to show up, it’s about advocating for what you care about, being involved with your local government and community organizations. In fact, a report just came out today by the Miami Lighthouse for the Blind that discovered that every website for candidates running for President in 2020 is inaccessible for blind people. Yeah, that’s right. How basic can you get and this is 2019.
People sometimes say, “Oh Alice, you’re so amazing,” and I’m like “YEAH YEAH YEAH…” (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 and wild adventures. This is both a cultural and political problem. And this is why visibility and representation is 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 am (which I often do) and watch Netflix non-stop, I’m gonna do that because this is my life, damnit! 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.
Homework for Co-Conspirators and Allies
Learn about these two bills that advance community living AND contact your elected representatives telling them to support them:
- HR 3253, Empowering Beneficiaries, Ensuring Access, and Strengthening Accountability Act of 2019. This bill reauthorizes the Money Follows the Person demonstration program until 2024, this program has helped thousands of disabled people transition out of institutions by giving federal funds to states to help “rebalance” how they provide long-term services and supports. It passed the house and will go to the Senate.
- S.117, HR 555 Disability Integration Act of 2019, addresses institutional bias and prohibit eligibility criteria, cost caps, or waiting lists that’s used to keep people from accessing community-based services.
Other steps you can take:
- Show solidarity & again contact your representatives anytime the Affordable Care Act is at risk of being repealed.
- Learn, follow, and support disabled people in your communities who are already doing the work.
- Be mindful of not co-opting or taking up space. Pass the mic and center it on the people most marginalized because they are the ones who know the systems best and can lead us to creative solutions.
A few organizations to follow and support
HEARD, Helping Educate to Advance the Rights of Deaf Communities, all-volunteer nonprofit that works to end mass incarceration and end all forms of violence against deaf and disabled people.
ASAN, Autistic Self Advocacy Network, a national grassroots disability rights organization for the autistic community, advocating for systems change and ensuring that the voices of autistic people are heard in policy debates and the halls of power.
Sins Invalid is a disability justice performance project that centers people of color, queers, nonbinary and trans people with disabilities.
Access Is Love, a campaign that aims to help build a world where accessibility is understood as an act of love instead of a burden or an after-thought by Mia Mingus, Sandy Ho, and Alice Wong.
Mia Mingus, 2018 Disability Intersectionality Summit (Oct 2018). Disability Justice is Simply Another Word for Love.
Patty Berne, (September 15, 2015). 10 Principles of Disability Justice
Reading and resource list on accessibility & disability justice from Access Is Love.
s.e. smith, (June 26, 2019). Meet the people fighting for health care access for disabled kids detained at the border, Vox.
s.e. smith, (June 26, 2019). Not one 2020 candidate has a website that is accessible to the blind, Vox.
Dustin Gibson & Keri Gray. (2016). We Can’t Breathe: The Deaf & Disabled Margin of Police Brutality Project. National Council on Independent Living.
Resistance and Hope anthology: Essays by Disabled People. (October 2018). Edited by Alice Wong.
Alice Wong and Laura Flynn. (April 2016). “Choreography of Care.” Making Contact Radio.
Selected Episodes from Disability Visibility Podcast
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