People with disabilities will remember your words and actions when COVID-19 is over

two cartoon heads with several gear wheels in the place of their brains looking at each other
Inactions count as well. In the words of Geddy Lee — when you choose not to decide, you still have made a choice

As I write this article, we are 5–10 weeks into the COVID-19 crisis, depending on what you consider the start date to be. I have lived slightly over half my life as someone with a mobility challenge under the protection of the ADA, and just under half without. The half of my life with the ADA in place I have seen improved access for people with disabilities. Sometimes painfully slow. Progress frequently required litigation or threats of litigation. But the needle was always moving in the right direction at a slow but steady pace.

As someone with the privilege of living in North America, the improvements were never fast enough for me. Imagine me as Veruca Salt in Willy Wonka reaching for the sky screaming “I want it all NOW!!” However, the continuous gradual improvement was enough that combined with an acceptable amount of extra work on my side and support from my family while consistently challenging the status quo, I felt like I could participate in education, business and society.

Access for me as a wheelchair user has never, ever reached “equal”, but it was “equal enough” when my Caucasian, North American, multiple-degree obtaining identity was taken into context with my disabilities. Which means some people without those privileges have never seen “equal enough” even with the gains legislated by the ADA. And those gains are under serious duress at the moment.

In the past 10 weeks, I’ve seen the last 30 years of gains for people with disabilities from the ADA quickly threaten to vanish through the words, actions and inactions of society, government, and corporate America.

Here are signs that society, government and business could have done MUCH better by people with disabilities before, during, and after, the COVID-19 pandemic

Many organizations rejected WFH as a reasonable accommodation request by people with disabilities

Followed by tripping all over themselves rushing to provide WFH for all the able bodied people banned from going into the office. It’s ableism when an organization:

  1. Claims “undue burden” to avoid accommodating the specific request of one person with a disability recommended by their medical provider on one day,
  2. But WFH is suddenly OK the next day and quickly put in place for hundreds or even thousands of people regardless of their disability status.

That sort of behavior is a fairly clear message “we don’t care about people with disabilities, your needs don’t matter.”

Organizations using COVID-19 as a sales opportunity

MANY grocery stores (and online food delivery services like DoorDash and ChoiceLunch) are using COVID-19 to drum up grocery delivery business. Amazon has been doing it for its Whole Foods subsidiary as well. But these organizations are largely ignoring the needs of people with disabilities, and the disproportionate impact not being able to shop in stores have on them.

  • Many of those organizations have inaccessible websites and mobile apps
  • NONE of those organizations in the US that I am aware of are taking any steps to make sure that people with disabilities actually get some of those slots.

I’ve been trying to get a delivery slot from Amazon/Whole Foods for three days. Not only can I not get one, every time I have to recheck (I stopped counting at 40 times) I have to go back to my shopping cart and through four pages again (using only my keyboard, I can’t use a mouse) to be told “no more slots available check again”. I can’t just refresh my page, or put my cell # in to say “notify me when a slot is available”. Each recheck is about a 3 minute process, so that’s 2 hours of my life I am never going to get back.

So while nominally accessible, it is definitely not usable. As a result, my husband, who is also immune compromised, but less immune compromised than I am, is forced to go out maybe once every 10 days to get essential fresh groceries. Hats off to grocers in the UK and Australia who *are* reserving slots of people with disabilities and started the “opening an hour early for the elderly and disabled” trend.

Online shopping used to be a convenience.

Now, it is a necessity.

And if your online shopping is not accessible and usable, you are excluding your customers with disabilities.

Many people with disabilities can’t drive. Taking a ride share for curbside pickup right now is at a risk level somewhere between “playing Russian roulette with your health” and illegal. I am hoping no one with a disability is going hungry. If you read this and find yourself in that circumstance or know someone who is, PM me through Medium. I will find a way to get you food.

Did your organization terminate hundreds of employees without so much as a by your leave?

I will never have a good thing to say again ever about Bird, after they terminated 400+ people simultaneously over Zoom. If you look at general statistics, somewhere between 8 and 72 of those terminated employees have a disability. Those individuals will struggle much more to get new jobs (especially under the current circumstances) and typically have lower levels of education and less of a financial cushion to weather through the unemployed time. In pandemic times, layoffs are a given. Bird handled their layoff with about the same formality, care, and concern as cancelling an RSVP to a kindergartner’s birthday party.

Is your organization looking at COVID-19 through an economics lens or a human lens?

Even today with well over 1.4 million people infected, I hear people saying they don’t understand how the economy could be trashed by something that is currently only infecting .035 % of the population, and is killing fewer people than influenza. Many people have told me specifically that my 18 month estimate for how long I (an extremely high risk individual) need to stay home is excessive. When I commented about my concern over whether I would get a ventilator as a 50-something type 1 diabetic, someone actually used the word neurotic to describe that statement. This is what I refer to as the COVID-19 economic lens. Nothing more than ableist commentary by ableist people who are not at high risk themselves and do not give a damn about anyone who is.

The COVID-19 human lens, in contrast is the one that worries about people as individuals and doesn’t attach values like costs or benefits to the individual. They are concerned about whether co-workers are OK, how they can help people with autism cope with change, and worry about whether people are lonely and have enough to eat. They bake bread, make masks, check on their elderly neighbors, send people cards and do karaoke zoom. Sometimes they do none of those things because it’s all they can do to keep themselves going. People looking through the COVID-19 humans lens at least think about others.

If you are a leader, be a compassionate leader. Make your decisions based on impact and not cost when you can. If you are not a leader, be compassionate anyways. You can lead without officially being a leader, and people will remember that when it’s time to evaluate promotions.

People in underrepresented minority groups (in which I include all the diversity dimensions including veterans, people with disabilities, LGBTQ, ethnicity, religion etc.) are going to have to be WOKE and work REALLY hard not to give back recently hard fought for victories. Right now:

  • Children with disabilities in the US don’t need to be educated (according to our fearless leaders in DC)
  • The same “fearless leaders” decided non-profits that received Medicare funding didn’t qualify for loans under the stimulus package. Boeing got $17 billion, but Planned Parenthood, and non-profits that focus on issues of mental health, LGBTQ+, the homeless, and that help the disabled just to name a few get $0.
  • Gender fair pay reports in UK are not longer mandatory
  • Triaging all over the world not only allows but encourages medical providers to consider what THEY think the quality of life and future of a person with a disability is (as opposed to what the person with the disability, their friends or their families think) in deciding who gets a ventilator and who does not. Why is this important? Because people without disabilities generally think life with disability is negative, and assign it a lesser value (Children of a Lesser God, anyone?). Organizations who receive HHS funding cannot discriminate based on disability or age. OCR is already taking action against those who do.
  • “Elective” procedures which includes surgeries such as gender transitions have been halted.

You may not control all the events that happen to you, but you can decide not to be reduced by them.

— Maya Angelou

Accessibility context for that very powerful quote:

  1. Be kind to everyone: you do not know what they are facing. What seems frivolous or optional to you (eg: buying plants) may be critical to them for mental health reasons.
  2. Don’t reduce access to people with disabilities because you are not leading in crisis, but merely managing a crisis response.
  3. Make sure employees AND customers with disabilities are *included* and even prioritized in your response to COVID-19. Don’t make assumptions, INVOLVE them !
  4. Caption the calls. Describe the graphics. Educate the kids with disabilities.
  5. Assume the people with disabilities have an equal right to access when deciding who gets a ventilator or other medical treatment. No one asked me if I wanted to give up my RA medication, they took it from me. That is flat out unacceptable even in a pandemic, and I will never forgive anyone who thinks that is OK.
  6. Take the extra beat to ask yourself “will what I am recommending work for people with disabilities?” and once you have answered that question, move on to “will it help them or hurt them? will there be a disproportional impact?

Then and only then will you be leading a COVID-19 response. People with disabilities will remember who did, and they will definitely remember who didn’t.

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