Upholding Our Values: Protecting the Rights of Persons with Disabilities Amid COVID-19

More than 15 percent of the global population — over one billion people — lives with a form of disability.  As our society adjusts to the new realities of the COVID-19 pandemic, those with a disability face specific challenges and risks. In particular, individuals who also have chronic health conditions or decreased respiratory capacity are at increased risk of serious illness or death from COVID-19 infection. Even for those who don’t face a higher risk from infection, the pandemic still endangers their wellbeing through discrimination and “barriers to information, social services, health care, social inclusion, and education,” as highlighted by Human Rights Watch. As countries, institutions, and companies respond to this pandemic with physical distancing measures, closure of non-essential services, and the rationing of medical care, we must ensure that we are meeting the needs and acknowledging the unique dimensions of this pandemic for persons with disabilities. Our approach must be inclusive. 

At a time when access to information is an essential component of making informed decisions about protecting ourselves, our loved ones, and our fellow community members, governments must ensure that the information they are disseminating is fully accessible. Human Rights Watch outlines that televised announcements must include sign language interpretation, websites must be accessible to people with disabilities, and telephone-based services must have text capabilities for those who are hard of hearing. 

As we all recalibrate to new physical distancing norms, it is important to consider that this may not be possible, or may have more profound implications, for persons with disabilities. The disruption to a daily routine, while difficult for all of us, may lead to increased anxiety for people with intellectual disabilities. Some may have difficulty understanding the situation and the reasons behind this sudden upheaval. Family members and caregivers are essential support systems that can help assuage some of the anxiety and social isolation arising during this time. Unfortunately, many family members have found themselves separated from one another as some group home facilities have closed their doors to visitors in an effort to protect the staff and residents from the virus. 

Moreover, for those who must rely on caregivers for essential tasks such as eating, bathing, and dressing, physical distancing is simply not an option. Therefore, we must ensure the provision of personal protective equipment and access to testing for caregivers. As Ariella Z. Barker, a fellow at the Harvard Kennedy School of Government diagnosed with spinal muscular atrophy (SMA), highlights in an opinion piece in the Boston Globe, “Without hope, death is inevitable. Thus, our political leaders need to give us a glimmer of light in these dark times. Rather than minimizing the scarcity of tests, the government needs to provide regular in-home testing to Americans with disabilities, our caretakers, and home-health providers.”

These multiple challenges that persons with disabilities and their caregivers face are almost paled in comparison to an even greater fear: denial of life-saving treatment due to one’s disability. Daniel Florio, who was also born with SMA, expressed concern that, “People overwhelmingly believe that being disabled implies a worse quality of life than it does.” If healthcare providers act on this belief, “What that means in practical terms is that people like us will die.” 

The decision to de-prioritize the treatment of a person with a disability may be a result of overt discrimination, implicit bias, or rationing care policies that place the needs of ‘healthier’ people first. Our healthcare systems and society as whole, have historically devalued the rights of people with disabilities. If we do not shift our values now, more than one billion people with disabilities globally are at risk of being denied life-saving treatment while battling COVID-19.

The COVID-19 pandemic has raised a critical challenge for our global community, and our response to it will define how firmly we stand by our values in times of great difficulty. Despite increasingly limited resources, strict physical distancing measures, and heavily strained healthcare systems, we must remain committed to equal protections and standards of care for people with disabilities.