On Friday, March 27, 2020—just a few weeks into the stay at home order for many Chicagoans—Disability Lead hosted an emergency Member briefing on the policy impacts of COVID-19 on the disability community. Below is a recap of the virtual event.
Thank you for those who joined Disability Lead for our first live Zoom event— Impacts of COVID-19 on the Disability Community: Briefing with Disability Lead Members Amber Smock and Emily Harris. This in-depth conversation moderated by our brilliant Disability Lead Members covered a wide variety of topics ranging for urgent healthcare access needs to community building. A few that stand out:
HEALTHCARE QUESTIONS
Amber addresses the many difficult questions that have cropped up regarding disability and health amidst COVID-19. While there’s a lack of immediate answers and clear solutions, the deliberation of these matters remains crucial going forward.
There are concerns about emergency rooms being at or beyond capacity. What happens if there’s a medical emergency and people with disabilities can’t get into the hospital? And then, if they do get in, what happens when they’re unrightfully barred from bringing in their personal assistant or support person, leaving them in a potentially more vulnerable position?
Or what about people with disabilities who need regular medical care in and out of home? How do they balance social distancing and getting the care they need? How do they safely reach their physician or therapist without being exposed to the virus? If they receive in-home care, how can those interactions be safely provided and monitored?
And, not only that, there are people with disabilities stranded in high-risk environments, such as nursing facilities, group homes, and prisons. How do we ensure the safety of these individuals, as well as the safety of those around them? As Amber muses at one point, “How do we support people — but also not spread germs?”
Amber and Emily recognize that while these complicated questions are difficult to navigate. At the same time, they, along with other advocates, are working hard to find solutions that ensure that people with disabilities have the necessary rights, financial support, and medical and personal care that they need in the time of COVID-19 and beyond.
PSA: If you know any qualified individuals who are willing to offer personal care, please have them contact Access Living or a similar organization. Many personal care assistants have quit or left town due to various reasons so the need for emergency care support is high. Also, consider volunteering to make phone check-ins to seniors and people with disabilities.
THE RATIONING OF MEDICAL CARE
A huge worry among the disability community revolves around the discriminatory distribution of scarce ventilators and the rationing of treatment in which health care professionals essentially decide who gets to live or die based on potentially biased perceptions of human value. We’ve all read enough unsettling articles on current medical discrimination practices to know that the elderly, the chronically ill, and people with disabilities all need to be wary and vigilant over this matter. Please know that while your fears are valid, our allies are doing everything they can to keep us all safe. On March 30th, Access Living sent a letter to Governor Pritzker, requesting legal assurance of non-discriminatory COVID-19 care. This letter was undersigned by more than 140 Illinois organizations, including Disability Lead (then called ADA 25 Advancing Leadership).
UPDATE: Pritzker has since responded with official guidance for non-discrimination in medical treatment for COVID-19, a first step that hopefully allows all of us to breathe a little easier.
THE DISABILITY COMMUNITY SPEAKS OUT
Disability activists have been blasting their voices all across the internet. Beyond tackling very serious medical discrimination issues mentioned above, bloggers and journalists are venting about the fact that after struggling for years to work from home and being told, “No, it’s not possible,” companies have been falling all over themselves to make that very thing possible seemingly overnight. While people with disabilities are justifiably miffed over these automatic accommodations for the able-bodied world, there’s also a palpable sense of relief. The benefit and ease of remote work have never been clearer — for the first time in maybe ever, there’s a real opportunity to make lasting changes. And who better to ask for guidance than the very people who have fought for remote work for years? People with disabilities, of course!
Though we are all understandably feeling scared right now, Amber challenges us to “take that fear and channel that to advocacy.” Expectations are changing, rules are fluid, opportunities for small local changes are growing. Take advantage of this time to talk to local businesses and organizations — the local fire station, the local bakery, the local school — and guide them on making changes that benefit the disability community. “There’s an opportunity to make lemonade out of lemons in this situation,” Amber says. And she’s absolutely right. Now, more than ever, there’s room for change. Please speak out when you can.
“Take that fear and channel that to advocacy.”
Finally, please continue to stay informed and engaged. Many of the resources mentioned in the conversation are listed on our COVID-19 resource page. Feel free to peruse a few of the articles, websites, and social media sources mentioned in Amber Smock and Emily Harris’s thoughtful conversation, listed below. Together, armed with information and fueled by action, we will do all we can to ensure that people with disabilities are fully included in all current and future COVID-19 plans.
ARTICLES
- 5 Things To Know About Coronavirus And People With Disabilities
- I Will Not Apologize for My Needs
- People With Disabilities Say Rationing Care Policies Violate Civil Rights
- Disabled people have worked remotely for years, and they’ve got advice for you and your bosses
WEBSITES
SOCIAL MEDIA
- FACEBOOK: Join the Disability Power for Community Integration Facebook group.
- TWITTER: Be sure to follow Alice Wong (@Sfdirewolf @DisVisibility), Imani Barbarin (@Imani_Barbarin), Rebecca Cokley (@RebeccaCokley), and Matt Cortland (@mattbc) on Twitter.
- WHATSAPP: Adam Ballard (Housing and Transportation Analysis at Access Living) is working on a WhatsApp community resource network. To join, contact aballard@accessliving.org.
NEWSLETTERS
- Sign up for Access Living’s Amber Smock’s newsletter
- Consider signing up for your Chicago ward’s newsletter