This article by Disability Lead Member Kevin Irvine has been reposted with permission from Rush University Medical Center. It was featured in Voices From Rush, where Rush leaders, providers and patients offer their thoughts and experiences on COVID-19.
As the COVID-19 pandemic spread across the United States, it became clear that it had the potential to affect many people with different disabilities in countless different ways.
Employees with compromised immune systems or complicated health conditions considered whether they were safe to continue coming to work, and Rush set up a procedure for assisting vulnerable workers. I had to self-assess and consider whether I was at any greater risk — I have HIV, but it is well controlled with medication, so I’m probably not in a “high risk” situation. However, my 14-year-old daughter has multiple physical disabilities, including obstructive sleep apnea, and she may have more difficulty managing symptoms, if she were to contract COVID-19, so I have added incentive to minimize my chances of exposure.
I feel very fortunate that I can continue my work from home but am incredibly grateful for all of my colleagues who are on the front lines and risking their health and safety every day. Disability advocates who have been talking about the importance of a work-from-home option as a reasonable accommodation for years noted how quickly many employers made the transition to remote work. Employees and employers looking for guidance could also tap new resources that quickly sprung up, such as the Job Accommodation Network’s section dedicated to COVID-19.
In addition to uncertainties surrounding the workplace, those in the disabled community also have experienced heightened uncertainty around health in the midst of this crisis. Disabled people of all ages who depend on ventilators have been alarmed as the demand for ventilators quickly exploded and rumors began to spread on social media of people being asked to surrender their backup ventilators.
States and hospitals started talking about rationing health care, which often means applying necessarily subjective “quality-of-life” assessments in an environment where many people with significant disabilities feel that their lives are undervalued. Disabled people who depend on personal assistants to help with bathing, dressing or eating grew concerned that their workers would not be available to help them.
Overall, many people with disabilities realized that things upon which they depended could be much harder to access, including medications, general medical care and therapies, even groceries. Rush showed our leadership by including an exception for disabled people in our COVID-19 visitor restrictions. Nonetheless, community members like Corey Axelrod, president of the Illinois Association of the Deaf, worry that people with hearing loss will not get effective communication when visits occur remotely and that he and his wife will experience communication problems when she has to deliver twins later this year. In addition, Axelrod notes that some updates about the pandemic are not accessible to everyone and lack of access to information can have serious consequences.
Activists and advocates have been furiously drafting op-ed articles, organizing politically and sharing resources and advocacy strategies. These have ranged from local disability rights groups like Access Living and Equip for Equality to national organizations like the American Association of People with Disabilities. Illinois Governor J.B. Pritzker took an important first step to respond to these concerns by announcing new guidance regarding non-discrimination in emergency health care situations. How much or how disproportionately the pandemic will impact people with disabilities in the long term is an open question, right now.
Ultimately, if health care and government leaders follow the disability community mantra of “Nothing about us, without us,” short- and long-term changes in policies and practices just may result in a world that is more inclusive and accessible for everyone.
Kevin Irvine, senior talent acquisition consultant for individuals with disabilities, is co-chair of the Rush ADA Task Force and facilitator of the Rush Disabilities Employee Resource Group for Rush University Medical Center and Disability Lead Member. Go here to learn more about becoming a Disability Lead Member.