Black Disability Freedom Dreams

Screenshot of Zoom call with 7 individuals - the 5 Fannie Lou Hamer Program participants along with AAPD's Keri Gray and Maria Town. All of them are smiling at their computers.

“This program has become my anchor of hope that Black Disabled people can have a community that uplifts one another through the challenges we face in voting and our everyday lives.  It helped me find my voice and helped me build skills to create a new path. One that enabled me to embrace my Blackness and my disability simultaneously. Our cohort dreamed of sharing this space with the world.

January 4, 2021

2020 has been one of the most challenging years for many of us. Black people, especially Black people with a Disability have been disproportionately impacted by COVID-19 and police brutality.  However, disproportionate impact is nothing new to our Black, Disabled community. Despite the injustices we face regularly broadcasted on the news, despite the statistics and careful analysis of academics proving how systematic racism and inequity exists, and despite Black people and people with disabilities running for office and occasionally winning, our bodies and our well-being are still not seen as a priority when writing or executing law and policy. Additionally, our perspectives and needs are often overlooked when making decisions that impact education and employment practices.

Personally, I experienced numerous challenges learning how to navigate academic, professional, grassroots and political spaces. Oftentimes, the safe spaces of embracing Blackness and Disability are broken up into separate silos, which can make it difficult to articulate how both intersect when advocating for my needs. However, this year, I had the honor of organizing through AAPD’s first cohort of the Fannie Lou Hamer Leadership Program. The Fannie Lou Hamer Program was created for Black Disabled advocates in memory of Black, Disabled voting rights activist Fannie Lou Hamer. Our cohort advocated for voter registration and civic engagement across Black communities leading up to the 2020 national and local elections, one of the most impactful election years of our lifetime.

This was a cohort where my ideas and organizing efforts were embraced and taken to new levels where they had been previously dismissed with other groups. I also learned about so many new nuances and perspectives that I now push myself to be accountable for. This program has become my anchor of hope that Black Disabled people can have a community that uplifts one another through the challenges we face in voting and our everyday lives.  It helped me find my voice and helped me build skills to create a new path. One that enabled me to embrace my Blackness and my disability simultaneously. Our cohort dreamed of sharing this space with the world.

Thus, we launched a campaign called Black Disability Freedom Dreams. We recognized how hard this year has been on the Black community and the Black Disabled community in particular. The converging crises of the COVID-19 pandemic and anti-Black state violence has uncovered long standing inequities that render Black communities socially, economically and medically vulnerable. In this context, inspired by Fannie Lou Hamer’s assertion that “Nobody’s Free, Until EveryBody’s Free,” we were compelled to broaden our drive for voter registration to a broader contemplation of #BlackDisabilityFreedomDreams. The Black, Disabled community encompasses a broad range of people with varied life experiences, needs and relationships to disability, so we hosted this event as an open exchange of ideas about how people who are Black and Disabled imagine and work towards liberation. The discussion was guided by the following questions:

  1. Why is voting and integrated civic engagement important to Black people with disabilities?
  2. How can we tackle and overcome ableism in our communities? How can people with Disabilities inform the greater population of ableism and how it exists to be more inclusive?
  3.  How can people with disabilities overcome impostor syndrome and stereotypes that threaten their day-to-day lives? How can we inform others of Disability stereotypes and how to be more inclusive in more professional and academic environments?
  4. What does Black Disability Freedom mean to you?
  5. Why is voting/civic engagement important?

AAPD and our entire cohort hopes that these highlights and guiding questions will continue the conversation and inspire others to create a space where we can be our full selves, unapologetically, as we dream and fight for our freedom.  We encourage people to use the hashtags #BlackDisabilityFreedom and #BlackDisabilityDreams continue this conversation to remind the world that we exist, we are here, and our lives and liberation is worth fighting for. We also hope that those who want to engage in allyship will gain insight on how to stand in solidarity with us. We do not have to feel alone on an island with the challenges we face. Our work is far from over, and we have many elections like the Georgia Senate runoff coming. This is a call to listen, learn, and however you can, take action.

Link for the Black Disability Freedom Dreams event on Youtube:
https://www.youtube.com/watch?v=xhAWLAq7UvE&feature=youtu.be

Link for the transcript of the Black Disability Freedom Dreams event:
https://www.aapd.com/black-disability-freedom-dreams-transcript/

By: Jalyn Radziminski, organizer in AAPD’s Fannie Lou Hamer Leadership Program.

Through AAPD’s REV UP Campaign, we are proud to announce our new initiative, the Fannie Lou Hamer Leadership Program. This program is designed for young (ages 18 – 30) Black disabled advocates who are committed to boosting voter registration and civic engagement across Black communities leading up to the 2020 elections. Participants will receive a $1,500 stipend and have the opportunity to create a national nonpartisan campaign that promotes voter registration and participation.

On Chronic Pain and the “Opioid Crisis” – A Disability Issue

October 19, 2018 | Eiryn Griest Schwartzman, 2018 AAPD Summer Intern

Pain is a universal human experience, felt by some more than others. Similarly to disability, it can begin at any time in life, whether it exists acutely or grows into chronic pain. According to the Institute of Medicine, chronic pain is a reality for over 100 million Americans. For more than a quarter of my life, at 21 years old, I have lived with severe, unrelenting pain. I no longer remember how it feels to live without it. Nearly every conventional treatment failed me. I’ve received every kind of unsolicited medical advice. I’ve been there, tried that, and still score a seven on the pain scale at best. My pain has become both personal and political.

Pain is full of complexities. It can be felt in every system of the body. Different qualities of pain present different challenges to seeking relief. A single approach to pain management cannot reasonably treat and accommodate the diversity of pain people experience. Yet, the 2015 CDC guidelines have effectively codified a one-size-fits-all strategy for pain care in the U.S. While its intention was to recommend limitations on opioid prescribing, it has instead instilled fear in healthcare systems, preventing doctors from tailoring treatment to individual’s needs. Above all, the guidelines inspired a slew of policy proposals that are damaging to disability rights, violating our autonomy and threatening our independence.

Chronic pain patients and people with substance use disorders (SUD) are all members of the disability community and we must protect their rights jointly. We must acknowledge that one can live with both mental and physical pain and no one source of pain negates the validity of another. The crisis our country faces is in navigating SUD treatment, drug safety, pain care, and the obligation to “do no harm” are complex issues that cannot be met with a singular solution.

So policymakers:

When you endorse limiting the supply of a medication, I hope you realize pain will still persist, and people will turn to less safe means to manage it.

When you suggest massage and physical therapy as alternatives to prescription medications, I hope you advocate for coverage of Home and Community Based Services so we can access pain treatment on the days we cannot leave our beds.

When you suggest residential rehab as the main addictions treatment to invest in, I hope you try to understand the harm done in institutions to those of us who are multiply disabled and marginalized. I hope you consider that these programs are not accessible to all.

When you insist on limiting access to opioids for people who take certain psychiatric medications, I hope you appreciate how impossible a decision it is to choose between treating your mental and physical health.

When you imply that only terminal illnesses warrant pain care, I hope you realize untreated pain can cost us our lives even if the cause itself is not inherently fatal.

When you propose “pain acceptance” as an alternative to legitimate treatment, I hope you realize that permanent trauma results from such medical neglect.

I need you to recognize that adequate pain care is not optional: it is vital to live and to thrive.

For more information on chronic pain and opioid issues in the disability community, please visit http://ncil.org/cpo.

 

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Eiryn Griest Schwartzman is a 2018 AAPD Summer Intern. Eiryn interned at the Equal Rights Center.

The Reconciliation of My Own Identity

September 21, 2018 | Maya Branch, 2018 AAPD Summer Intern

Most days, I’m like Bojack Horseman. There are very few moments in which I want to be alive. In fact, my continued existence is borne out of sheer stubbornness rather than enthusiastic will.

A four-panel image with screenshots from the TV show Bojack Horseman. Across the panels, Bojack says, "I don't understand how people live. It's amazing to me that people wake up every morning and say, 'Yeah, another day, let's do it!' How do people do it?" Image via Pinterest

A four-panel image with screenshots from the TV show Bojack Horseman. Across the panels, Bojack says, “I don’t understand how people live. It’s amazing to me that people wake up every morning and say, ‘Yeah, another day, let’s do it!’ How do people do it?” | Image via Pinterest

As a queer Black woman, I’ve learned that the most crucial form of resistance is survival. And I want to claim the same pride encoded within my melanin in all aspects of my identity, including my disabilities. But sometimes, it feels like right at the accessible entrance of the disabled community, there’s a sign (press for audio) in large print and Braille that reads “Whites only.” That’s not to say there’s an active and maliciously formed effort within the disabled community to gatekeep who can claim pride in such an identity; however, it is to bring attention to the fact that White people are allowed to be disabled in a way that most ethnic minorities are not.

There are probably a thousand ways I can demonstrate this: with the finding that students with 504s are “overwhelmingly white [and] disproportionately male,” by illustrating the extent of medical racism with studies that affirm how Black people experience more disability and worse outcomes, or even with the recent, candid accounts of Serena Williams and Queen Bey. Instead, I’ll present this: epigenetics has shown that inherited PTSD, particularly in Jewish, Black, and indigenous populations, is real — but because of the propensity someone from these communities has for developing a disability, resources are often not provided because the nature of disability is so normalized. In other words, racism is normalized and can cause depression or other mental illnesses, but because most ethnic minorities will experience racism at one point, the consequences are accepted as the standard of living even if those consequences affect one’s ability to sleep, think, concentrate, or even breathe.

You’d think this would mean the Black community is a strong advocate for mental health needs, but society has created these archetypes like “the strong Black woman” that are seemingly positive, yet actually strip us of vulnerability, of humanity. It feels, then, that to be a Black woman in America is to be traumatized and held hostage by your own strength, to be told that accepting trauma quietly is a token of your womanhood. Yet, the matter of fact remains: bigotry, misogynoir in particular, is disabling.

With respect to mental illness in particular, there are increased barriers to proper care for Black Americans, and both Black folks and disabled folks are disproportionately incarcerated. When you confound these marginalized identities, you get a unique form of oppression, a fear in living similar but different than that of White people with disabilities.

I have lived at this intersection of these oppressive systems and generally, my Blackness, queerness, and disability were depicted as being at odds, but somehow, I have finally put them back together in a way that feels authentic. However, if I’m ever able to share my story the way others have, I just want people to know: I’m not inspirational. I’m traumatized.

 

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Maya Branch is a 2018 AAPD Summer Intern. She interned in the Office of Senator Tammy Duckworth (D-IL).

Living with Anxiety

October 16, 2017 | Madlyn Jennings, 2017 AAPD Summer Intern

I have lived with anxiety for as long as I can remember. For the majority of my life, my constant anxiousness was a part of average everyday life for me and not something anyone else would understand. It was not until I was in college that I realized anxiety is something other people struggle with. It was at this point that I understood I had a mental disability. I have always had a physical disability. That is obvious to anyone who meets me. This is not the case with a mental disability. Even once I accepted I had a mental disability, I did not seek help. My thought was “if everyone is doing just fine without help so can I.” It was not until this summer that my mindset changed. My experience as an AAPD intern this last summer has helped me to realize that there is no shame in having anxiety. I had the opportunity to meet other people with anxiety and learn how they managed their anxiety. They were also supportive of and accepting of my experiences. Through their support I have gained the confidence necessary to seek help in handling my anxiety. I have gained so much from my internship. I have made connections within the disability community and learned so much about the history of the movement. These are important things and I appreciate them; however, I believe the thing that will be of most benefit to me moving forward will be my new perspective on the part my anxiety plays in my life.

 

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Madlyn Jennings is a 2017 AAPD Summer Intern. This summer she interned with the National Education Association (NEA).

Action Alert! 10 Days to Stop Latest Health Care Repeal Effort

[UPDATE – September 21, 2017]

The Senate Finance Committee is collecting comments on the Graham-Cassidy health care bill (the one that proposes to repeal the Affordable Care Act and decimate Medicaid) in advance of their hearing this Monday.

Please submit your comments on how this bill is harmful to people with disabilities. Comments can be submitted in the form of letters, testimony, video links, photos, and stories. Sharing your personal story can be particularly impactful. Comments can be submitted until 1pm ET on Monday (9/25). Please email your comments to GCHcomments@finance.senate.gov. You should also cc your Senators.

If you are in the DC-area please consider attending the hearing – Monday (9/25), 2pm ET in room 215 of the Dirksen Senate Office Building.

We are now 9 days away from the end of the budget reconciliation process for fiscal year 2017, which would allow the bill to pass with a simple majority (51 votes).

 

New Resources:

 


 

September 20, 2017

The Graham-Cassidy-Heller-Johnson (GCHJ) bill – another effort to repeal the Affordable Care Act (ACA) and gut Medicaid – is gaining traction in the Senate. Last week Senator Cassidy (R-LA), one of the co-sponsors, told reporters he believes he has support from 48-49 Republican Senators, just two or three votes shy of the majority needed to pass this bill.

The Graham-Cassidy-Heller-Johnson (GCHJ) proposal would:

  • Allow insurers to charge individuals with pre-existing conditions more money for health coverage
  • Cap and block grant Medicaid (the equivalent of Medicaid cuts)
  • Cut funding for Medicaid expansion
  • Cut funding for financial assistance that helps low-wage workers and moderate-income families buy private insurance
  • Repeal the ACA individual and employer mandates

This partisan bill undermines the bipartisan marketplace stabilization efforts that were taking place within the Health, Education, Labor and Pensions (HELP) Committee led by Senators Lamar Alexander (R-TN) and Patty Murray (D-WA).

Proponents of this bill are aiming to pass it as part of the budget reconciliation process for fiscal year 2017, which will allow the bill to pass with a simple majority (51 votes or more – Vice President Pence is able to cast a tie-breaking vote in the event of a 50/50 outcome). However, the Senate Parliamentarian has advised that budget reconciliation process expires on September 30. These next 10 days are critical – please contact your Senators. If you’ve already contacted them, do so again.

The Congressional Budget Office (CBO) is still in the process of scoring this bill. While they plan to have a preliminary analysis completed by next week, the CBO “will not be able to provide point estimates of the effects on the deficit, health insurance coverage, or premiums for at least several weeks.” Furthermore, few congressional hearings have been scheduled to discuss this bill. Voting on this bill without a full CBO analysis and congressional review is a disservice to the millions of Americans it will impact.

This latest health care repeal effort is reminiscent of the bad repeal bills we saw over the summer – it is just as harmful to people with disabilities and their families. Over the summer, some Senators broke party lines to vote against the healthcare repeal bills that would decimate Medicaid and leave millions of Americans without health coverage – we cannot assume that that these Senators will vote no on this bill.

Contact your Senators today and tell them not to support this bill!

 

Take Action

Contact your Senators and share the following messages:

  • Oppose the Graham-Cassidy-Heller-Johnson proposal and any other bill that cuts, caps, or block grants Medicaid.
  • Support bi-partisan efforts to stabilize the healthcare marketplace and improve healthcare for all.

Additional talking points on the Graham-Cassidy Bill from the Center for Public Representation.

 

Call your Senators

Call the Capitol Switchboard at (202) 224-3121 and ask to be connected to your Senators.

 

Meet with your Senators

Many Senators will be back in their home states from September 21-24, 2017 for the Rosh Hashannah break – this is a good time to engage them in-person. Contacting Congress allows you to request a meeting with your Member of Congress. You can also check the Town Hall Project for congressional events in your area.

 

Tweet your Senators

Tweet your Senators and use the hashtags #SaveMedicaid, #NoCutsNoCaps, #ProtectOurCare, #ADAPTandRESIST, #KeepAmericaCovered, and/or #CoverageMatters.

 

Email your Senators

Contacting Congress provides unique links to email your Senators directly.

 

Key Senate targets include:

It’s important to contact the Senators from your home state. Additionally, the Senators listed below have been identified as key targets to convince to vote no on this bill.

Tier 1

  • AK: Murkowski
  • ME: Collins
  • WV: Capito

 

Tier 2

  • AZ: Flake & McCain
  • OH: Portman

 

Tier 3

  • AR: Cotton & Boozman
  • CO: Gardner
  • IA: Grassley & Ernst
  • IN: Young
  • KS: Moran
  • NC: Tillis
  • ND: Hoeven
  • NV: Heller
  • SD: Rounds
  • TN: Alexander & Corker

 

Tier 4

  • GA: Isakson
  • KS: Roberts
  • NC: Burr
  • SC: Scott
  • UT: Hatch
  • WY: Enzi

 

Additional Resources

 

Colorblind: The Sins of Our Past

August 22, 2017 | Chakir’ Underdown, 2017 AAPD Summer Intern

The crumbling remains of the Crownsville State Hospital, 22 miles south of Baltimore, sit atop coveted real estate. Developers have placed bids on the land to transform the location into various structures, from a parking site to a shopping center. However, another struggle is connected to this site, which was first known as the Maryland Hospital for the Negro Insane. This was one of many segregated institutions around the nation and a dark mark in the history of mental healthcare and black history. Some research on Crownsville focuses on the atrocities against black patients, while other research sheds light on the disparate treatment of mental health patients during the era of institutionalized care. I do not author this post in order to critique the credibility of either perspective, because both discourses are important.

The erasure of offensive and discriminatory history is not a novel concept in the tapestry of the United States. If the history of Crownsville is not shared, we risk enabling ignorance towards the treatment of mental health patients and people of color. Eugenics and “separate but equal” cultures still exist today, so our work as advocates is not finished. Educating the general public on this history, and demanding its incorporation into school curriculum, honors and respects the memory of a challenging and emotive past. We can not allow assumptions of a post-racial society or the golden age of the ADA generation to preclude sharing of vital historic accounts.

Interview with Paul Lurz, Crownsville State Hospital

I would like to thank Paul Lurz for agreeing to speak with me about Crownsville’s history. Paul worked at the hospital for 40 years, and he and others work to preserve the stories and memories of the institution. I also credit Vanessa Jackson, LCSW, for her paper “Separate and Unequal,” and Zosha Stuckey for her work “Race, Apology, and Public Memory at Maryland’s Hospital for the ‘Negro’ Insane,” published in the Disability Studies Quarterly. Please also see Disability Incarcerated, edited by L. Ben-Moshe, C. Chapman, and A. Carey. Finally, thank you to Janice Hayes-Williams, a historian and columnist who also works to preserve the memory of the lives lost at Crownsville.

 

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Chakir’ Underdown is a 2017 AAPD Summer Intern placed with the National Disability Rights Network (NDRN). This post originally appeared on Chakir’s blog, Kinky Summer, on August 6, 2017.

 

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