As New York State continues to grapple with the coronavirus pandemic, the crisis has served as a reminder that though people with disabilities and chronic health conditions remain protected by civil rights laws during a pandemic, they continue to face disability discrimination.
To date, there are more than 200,000 confirmed coronavirus cases and more than 11,000 deaths in New York State. Federal and state governments have taken steps to mitigate the spread of the virus. Gov. Andrew Cuomo mandated that residents maintain six feet in distance from others, and that only essential workers—including home care workers and personal aides who provide services for people with disabilities—report to work.
At the federal level, the crisis prompted the Office for Civil Rights (OCR) at the U.S Department of Health and Human Services (HHS) to issue a bulletin reminding states, hospitals and doctors that they cannot discriminate against people with disabilities during the crisis. OCR enforces the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, the Age Discrimination Act, and Section 1557 of the Affordable Care Act (ACA), which prohibits discrimination in HHS-funded health programs or activities.
“Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism,” said OCR Director Roger Severino. “Persons with disabilities, with limited English skills, and older persons should not be put at the end of the line for health care during emergencies.”
A history of discrimination against people with disabilities
The announcement by the OCR is a disheartening reminder of the discrimination people with disabilities and chronic health conditions have faced over time, and how they are viewed as less important than those without disabilities.
During the medieval era, disability was considered a punishment from God for one’s sin or bad behavior. In previous centuries, many viewed disability as a deformity or failure. More recently disability has become seen as a condition resulting from disease or trauma. Still, environmental and societal barriers that prevent people with disabilities from full community participation remain common.
We see this in longstanding healthcare, housing, employment and transportation challenges and inequality, as well as abuse, bullying, and other forms of discrimination that threaten the physical and mental wellbeing of many people with disabilities. Members of the disability community are more than twice as likely as those without disabilities to be victims of violent crime. And in New York alone, current obstacles such as Electronic Visit Verification, the lack of accessible sidewalks for wheelchair users and slashes to Medicaid further highlight how the needs and concerns of people with disabilities are disregarded. Underlying all of these issues is a longstanding problem: people with disabilities are simply seen as less significant, less worthy, than other people.
The coronavirus pandemic poses yet another challenge
While there has been progress thanks to decades of activism by people with disabilities who refused to be treated as second class human beings, the challenges sometimes seem endless. Case in point, the current coronavirus pandemic. While the OCR reminded health and government officials that people with disabilities are protected by law, there is growing concern among disability rights groups, civil rights groups and people with disabilities about states and hospitals rationing care for critically-ill patients. States may rely on protocols for rationing treatment, but people with intellectual and physical disabilities may be deprioritized in the event of emergencies.
For example, in March, when New York officials were sounding the alarm about a shortage of ventilators to assist patients with serious respiratory problems, the fear was that if rationing took place, people with visible physical and/or intellectual disabilities would be put at the end of the line.
An investigation from the Center for Public Integrity analyzed policies and guidelines from 30 states to see how people with disabilities would be treated if ventilators were rationed. In all but five states, they found provisions that might result in this population getting lower priority than other patients. Other states did not release policies or had none.
“We signed a complaint with the Office of Civil Rights that this is a violation of the ADA—you cannot discriminate based on disability and age,” said Ivanova Smith, a disability advocate in Tacoma, Washington who has an intellectual disability, of her state’s guidelines.
Smith added that she faces discrimination when she visits her doctor, and knows people who have had discriminatory experiences.
“They’ve had treatments denied. They were denied an organ transplant,” she said. “People at the hospital didn’t want to take people to the ICU. They’ve said, ‘Well, they’re not doing much in their life’, especially people who are non-verbal and people who have medical fragility.”
Fortunately, civil rights and disability rights organizations have taken action in support of people with disabilities during the pandemic. Disability Rights New York (DRNY) filed a complaint with HHS against the New York State Department of Health (DOH), saying that the state has failed to provide clear guidelines that would give people with disabilities adequate access to ventilators. The organization also called upon the New York State Department of Health to take immediate action to ensure people with disabilities have equal access to life-saving health care and are not last in line for assistance. Advocates say that institutions that follow vague guidelines will be in violation of the ADA.
Resources to address discrimination
It’s essential for people with disabilities to know they have rights and can take action. New York City, for example, has some of the strongest civil rights laws in the nation.
According to the New York City Commission on Human Rights, which enforces the City’s anti-discrimination law, complaints about disability discrimination in New York City surpass those about race or gender bias. The top complaints center on wheelchair or mobility device users being denied access to housing or public accommodations, and family caregivers being fired or retaliated against by employers.
In addition to enforcing the City’s anti-discrimination law, the Commission on Human Rights educates the public about their rights. Regardless of whether the matter pertains to employment, housing, race or other areas of life, New Yorkers with disabilities who feel they have been discriminated against can file complaints with the Human Rights Commission or learn more about their rights here.
The coronavirus crisis has gripped the globe. It is a time filled with fear, uncertainty and ongoing updates. But now, more than ever, we should rise to the occasion to support people with disabilities in need, and distance ourselves from discrimination.