Third-Year Commemoration of The Partnership’s Daily COVID-19 Disability Rights & Disasters Call
In memory of Michael Hickson, Sheryl Grossman, and Kimberly Hill, and all of our disabled siblings lost directly or indirectly to COVID-19
On Friday, February 28, 2020, The Partnership brought together stakeholders and advocates from across the country to discuss and outline the systemic barriers and gaps in response we knew were going to disproportionately impact disabled people. On March 3, 2020, we released a National Disability Rights Call To Action, which obtained 183 organizations’ support to collectively raise the urgent need for government at all levels to address the rights and needs of people with disabilities, older adults, and people with access and functional needs throughout all phases of the COVID-19 outbreak and all public health emergencies. We continued working together to raise our Call To Action to the White House, Congress, Personal Assistance Service Providers, and the Disability Community.
The group decided daily meetings were valuable and should continue for as long as needed. Three years later, we are still meeting each and every day. After releasing the Call To Action in early 2020, COVID-19 had begun heavily impacting people in the U.S., initially in the Pacific Northwest, and specifically in congregate settings like nursing facilities.
We did not yet know that, tragically, we would lose over a million disabled siblings in the U.S. alone since the onset of the pandemic. When we learned of the death of Michael Hickson, we took action. Mr. Hickson was a disabled Black man who was hospitalized for COVID-19 but was denied treatment, against the wishes of Mr. Hickson’s wife, because his doctor believed he had “no quality of life” as a man with quadriplegia and a brain injury. We strategized with Melissa Hickson, Michael Hickson’s widow, and we issued a statement expressing our outrage of Michael’s murder and our solidarity with the Hickson family. Since the onset of COVID-19, we have been aware of and addressed the disproportionate impact of the pandemic on marginalized people, especially multiply marginalized disabled people.
On initial calls, we discussed the disproportionate impact that the virus would have on disabled people, given that every disaster does. We speculated that COVID-19 would likely become a pandemic. We began to strategize about how to protect disabled people best when inevitably other disasters struck while the virus was still upon us. Ultimately, we feared for the lives of our disabled siblings that lived in nursing facilities, psychiatric institutions, prisons, group homes and other congregate settings, as well as our siblings in the community, and indeed, ourselves.
Early on we discussed and strategized on how upcoming in-person events could be made virtual and the need for an organized response from the Disability Community came almost immediately.
It was decided that calls would continue for as long as participants attended our daily zoom meetings. People with a vested interest in the rights and needs of people with disabilities throughout disasters and public health emergencies have consistently attended the call. There are many participants that have been on the call consistently for all three years, some have attended sporadically and others have stopped participating. New participants join the call regularly to learn about the latest COVID-19 developments as well as concurrent disasters. Without much discussion the group decided to meet on holidays. The assumption is that if people felt the need to attend they would. It turned out that people came to the meeting on major holidays including Thanksgiving, Christmas, and New Years.
Conversations later focused on discriminatory use of crisis standards of care when disabled people with COVID-19 were admitted to hospitals, and ways the disability community could be educated to take precautions against COVID.
The calls evolved with scientific understanding of COVID mitigation strategies, development of a vaccine, and treatment options. For example, during the first few months of what had rapidly become a global pandemic, masks were not recommended for use by the general public, so the discussion centered around hand washing, hand sanitizing and sanitizing surfaces. Later, the discussion shifted to obtaining proper masks and educating the disability community about wearing them.
The conversation also shifted as resources became available. Once the mRNA vaccine was approved for emergency use by the FDA, much discussion occurred about equal access to vaccine and vaccine information. Later the focus of calls turned to treatment for COVID, such as Paxlovid.
In addition to issues of protecting the rights of people with disabilities during the pandemic, considerable discussion has occurred about the prevalence of COVID-19 and the scientific understanding of it. It was a turning point in the call when staff from the American Red Cross began attending on a daily basis and when staff from CDC started attending frequently. With support from the Red Cross, we discuss COVID and other infectious disease prevalence, mitigation, and treatment strategies most days.
In addition to the mentioned publications, throughout the years, we have released:
- National Survey on Institutionalization in the Wake of COVID-19
- Open Letter to Rachel Maddow RE: Nursing Home Challenge
- February 23 – July 31, 2020 Report: Failures in COVID-19 Response Harm People with Disabilities and Older Adults
- National Call To Action: A Year Later
- Disability Community Response to 2/4/22 HHS COVID-19 Guidance
The benefits of our call have included cross-disability, cross-discipline education, problem-solving in real-time, and peer support. The calls have been an open and safe space for advocates, emergency managers, public health officials, national, state, and local agencies, and disability leaders to come together, share resources, educate one another, ask and tackle difficult questions, navigate systems, work on advocacy strategies, and support each other.
In addition to discussing disability rights and disability justice during COVID and concurrent disaster and the status of COVID prevalence and vaccination rates regionally, nationally, and globally, we have shared personal stories during calls. This had ranged from sharing about the experience of contracting COVID, vaccine availability and side effects, to the birth of children and grandchildren.
Response to the Call
Participants indicate their support of the call by consistently participating. The call has had attendees each day since its inception. In a survey about the call conducted in September of 2022 participants gave the following reasons for continued participation in the call:
- Current and accurate information
- Community and support
- Resources and subject matter expertise
- “The beauty of this opportunity is that no concerns or questions are off the table so, it has been the broadest resource for pandemic action in the disability rights and Independent Living Movement space.”
- “Centering disabled voices and experiences; action; … the people, the people, the people”
They described the call as being:
- Supportive, and
- A “shelter from the storm”
Call outcomes include:
- Stronger and more impactful relationships with the American Red Cross and the CDC
- The Partnership discussed, summarized and disseminated highlights from a recent study, “Severity of Coronavirus Disease 2019 (COVID-19) Hospitalization Outcomes and Patient Disposition Differ by Disability Status and Disability Type."
- The summary was widely disseminated throughout The Partnership’s network
- Collaboration with the University of Montana Rural Institute for Inclusive Communities to develop and present a poster at the 2022 American Public Health Association (APHA) conference
- Support to Melissa Hickson and the Hickson family
- Support to a family in moving undocumented relative with quadriplegia out of an institutional setting
- Providing information to and for new government and nonprofit sector disability and disaster employees
- An interdisciplinary think tank with representation from across the regions with care for one another
We remain committed to continuing the Daily COVID-19 Disability Rights & Disasters Calls for as long as the community finds the space useful.