Nia Taylor knows she’s at risk and that her grandmother is too. The two women are disabled and “just hoping to wait this thing out and survive it” from their home in Germantown.
Taylor, who designs and makes clothing and other accessories, has lupus and asthma. She has been an in-home caregiver for her grandmother, Ella, for several years. Ella has rheumatoid arthritis and kidney disease. Adding to Taylor’s stress, the pandemic has separated Taylor and her partner, who is caring for her own mother and has a son with autism.
“This is a tough time to be solo,” Taylor said. “We all have to stay in our separate spaces right now just to stay alive, just to keep our loved ones safe. But you really ache to just get that hug, that back rub, that breath on your neck while you’re sleeping, you know?”
Black people represent more than two-thirds of the deaths from COVID-19 in Philadelphia since the pandemic began. LGBTQ people are also at higher risk. A Black lesbian, Taylor admitted, “I am scared. I try never to go out.”
On March 25, Human Rights Watch announced that COVID-19 presents particular risks for folks living with disabilities worldwide, noting that governments should make extra efforts to protect the rights of people with disabilities in responding to the pandemic. The U.S. has not done so.
“People with disabilities are among the world’s most marginalized and stigmatized even under normal circumstances,” said Jane Buchanan, deputy disability rights director at Human Rights Watch. “Without swift action by governments to include people with disabilities in their response to COVID-19, they will remain at serious risk of infection and death as the pandemic spreads.”
Globally more than 1 billion people live with some form of disability. In the U.S., the Centers for Disease Control (CDC) says that one in four Americans has one or more disabilities and that LGBTQ people have higher rates of disability.
Lauren Alden, manager of Independent Living Services at Liberty Resources Inc. (LRI), in Philadelphia, explains that folks with disabilities are at a higher risk if not in outright danger during COVID-19 due to discrimination and barriers to information, social services, health care, social inclusion and education. LRI advocates for and works with people with disabilities to ensure their civil rights and equal access to all aspects of life. Alden said that “disabled people who are also LGBTQ face even more obstacles due to discrimination and lack of access.”
People with disabilities are treated differently within the system, said Alden, and the pandemic has escalated that. “Our people get thrown into nursing homes under what are ‘blanket waivers’ — our people don’t even go to hospitals first.”
One issue that concerns Alden is food insecurity. The pandemic has put extra demand on food pantries and food banks. “A lack of proper nutrition is going to put even more stress on people with disabilities and chronic illnesses,” she said. Liberty Resources has maintained its food pantry “wearing gloves and handing food out the door.”
There are a lot of drop-ins at LRI, Alden said, and “the shutdown has isolated people who are most in need of support.”
She said, “We need extra support for multiply marginalized people like LGBTQ disabled folks. If you don’t have access, you are going to be at higher risk.”
Pennsylvania has been one of the states leading on the COVID-19 response. Gov. Tom Wolf (D) called for an early shutdown, and Pennsylvania Health Commissioner Dr. Rachel Levine has been a leader on the pandemic.
Sen. Bob Casey (D-PA) has been at the forefront of the response to the disability community. He told PGN, “More than 105 million Americans, approximately 4 out of 10 adults, are at a greater risk if infected with coronavirus (COVID-19), including older adults, people with disabilities and those with underlying health conditions.”
Casey said, “I introduced the Coronavirus Relief for Seniors and People with Disabilities Act to ensure we are able to adequately respond to the needs of the disability community while we work to combat this pandemic.”
While not outright blaming Republicans, Casey acknowledged that Congressional coronavirus efforts had been mixed. He said, “While the response of Congress has been good in some ways, we still have not provided enough. We must get the resources needed to support people with disabilities in their homes and to ensure they have access to home-based meals and other services.”
The bill, co-sponsored in the House by Rep. Debbie Dingell (D-MI), is still awaiting passage three weeks after Casey introduced it, despite clamoring from disability activists for help.
Alden said it’s imperative that disabled Americans “not get left behind.”
Disability activists have been pushing for ethical rules for treating disabled people, who may be triaged out in point systems that favor non-disabled people in hospitals where ventilators and other treatments are scarce.
On April 15, Sen. Kirsten Gillibrand (D-NY), member of the Senate Aging Committee and a staunch supporter of both disabled and LGBTQ people, called on U.S. Department of Health and Human Services (HHS) Secretary Alex Azar, Centers for Medicare and Medicaid Services Administrator Seema Verma, and HHS Office for Civil Rights (OCR) Director Roger Severino to ensure the equitable distribution of health care during the COVID-19 pandemic.
Both Severino and Verma have long anti-LGBTQ records.
Gillibrand said, “Enforcing Section 1557 of the Affordable Care Act, the Americans with Disabilities Act, and the Rehabilitation Act would help ensure these populations are protected and that health care providers are prevented from denying care based on age or disability.”
Most critically, Gillibrand calls on HHS to “prohibit perceptions of quality of life of people with disabilities from being used to deny or give lower relative priority for care.”
Gillibrand said, “Health care is a right, regardless of age or disability. As our health care system struggles with the surge of COVID-19 patients, it’s crucial that the administration provide clear guidelines for equitable care for all Americans.”
But Taylor expressed what many disabled people have argued is inevitable: they won’t get the same care. Taylor said, “I’m a Black lesbian — my chances drop with both those words.” She said she believes “being disabled means I won’t get the best care, my grandmother won’t, my partner’s son won’t. You see it on the news — there’s this tier system. Would we get a ventilator? I don’t think so.”
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