“Embrace this time of change !” the marketing email gushed. Uh, no, I said. And then I unsubscribed.
My friend Debbie Levitt wrote an article about COVID-19 spam. I’ve only known Debbie for a few months, but our views on accessibility are identical and I feel like we can finish each others sentences on that topic at this point. While I’ve pretty much gotten the same types of emails as her (maybe not QUITE as many), as a disabled woman, there is one aspect to these emails that I find particularly grating, and that is toxic positivity.
Toxic positivity largely encompasses the concept of some individuals focusing on positive, feel-good, happy emotions and rejecting anything that may trigger negative emotions. Every lemon MUST be turned into lemonade, no exceptions.
People who are toxically positive don’t limit this approach as the right way to live their lives;
Toxic positivity tsunamis into their business and personal relationships with others.
Psychologists say toxic positivity also can have extremely negative impacts on those that are toxically positive, including being inauthentic, not fully processing feelings, and avoiding the validation of emotional experiences. This is in addition to the impact it has on the receiving end of toxic positivity including having their experience / situation being minimized, and being shamed or chastized for having negative thoughts.
Anecdotally, I know very few people with disabilities who are toxically positive. Those that are tend to rely on faith as the source for their continuously positive and cheerful natures (“God will take care of everything, I just need to keep on smiling”). That is not an approach I can personally adhere to. If there is a God, I feel like She’s probably to busy to intervene in whether or not I can get insulin 6 months from now.
That last sentence allows me to transition into how people with disabilities deal with negative situations. Many people with disabilities use dark humor and sarchasm as coping mechanisms.
- Everyone with a disability, regardless of what they are and when they were acquired, have been let down *repeatedly* by our bodies, by the medical system, by the government, by society.
- Many of us have been let down or even abandoned by family members, schools, and employers.
It is hard to stay continuously positive in that context, which is why at least I personally have such a negative reaction when interacting with others who are toxically positive.
Let me be very blunt here: People with disabilities are getting EFFED over in the current Coronavirus driven environment.
No lemonade, all lemons.
- Children with disabilities are being told through actions and words that they are not worth educating.
- Health care systems are telling us that if we get infected or have non-COVID related medical issues at peak times, we aren’t worth saving.
- Some of the businesses that are now telling everyone to work from home are the same companies who were telling people with disabilities a month ago that it was an “undue burden” when WFH was requested as a reasonable accommodation.
And these three facts are compounded by the following:
- The conditions that disabled us almost always require ongoing treatment that can’t be done remotely — physical therapy, CT scans, infusions, ultrasounds, CTs and labwork can’t be “phoned in”
- If our medical conditions flare up (completely independent of Coronavirus) at a time when the medical system is collapsing, we are on our own
- Medications that some of us rely on to stay functional (especially for folks with RA or Lupus like myself) are being diverted to Coronavirus treatment and we are being “thanked for our sacrifice”. Unfortunately the health care provider that sent the email in the link above that is currently making the rounds is my health care provider too. Whose motto is “Thrive”. My doctor didn’t even bother responding to my query about plaquenil, and a second drug I have been taking for years (Actemra) I can’t get refilled either because it’s also being used in Coronavirus clinical trials. No one has bothered reaching out to me about how I’m supposed to cope with all my medical conditions with two of my go-to medications now not being obtainable. And I’m sure if I ask for more pain killers, I’ll be labeled “drug seeking”
- Some people with severe disabilities can’t “self-isolate”. They require care givers, which puts them at a higher risk of infection, or the need to be sent to a hospital or nursing facility if the care giver gets sick. Which in a classic viciously loop also puts them at a higher risk of getting sick. And at the bottom of the pile to receive serious intervention when the health care system gets overwhelmed by demand.
One thing that saved my sanity as a child as I was going from surgery to surgery, from cast to brace to PT, was a rule I set myself. Every time I got bad news, I was allowed to wallow for 48 hours without having to provide an excuse. Eat a pint of Haagen-Daazs? Sure. Binge watch M*A*S*H or play hours of Wizardry? Absolutely. But at the end of 48 hours, that was it. I picked myself up, dusted myself off, and kept moving forward. And through my 24 surgeries, which required re-learning how to walk 5 different times, that is what has kept me going. Me giving myself permission to be as negative as I wanted, and not having to provide a reason why, no matter what anyone was around me was telling me I should do.
Throughout this global emergency I make one request:
Be kind, you never know what others are experiencing.
- People are losing relatives, some of them close. Friends and family can’t gather in person for funerals, wakes, and other ways of typically coping with these losses. Jews can’t have minyans (prayer groups of 10 or more men) or sit shiva (7 days of mourning) which strikes at the core of their religion.
- Others are stressed to the gills by their personal situations, afraid that they will lose access to current treatment or die by being triaged out of care in hospitals, or lose their caregivers and then get tossed into a nursing home and triaged out of care when they get sick
- People are trapped in countries they don’t live in.
- Not everyone has great internet access at home.
- Some people don’t do well with change.
- People that can just squeak by in in-person settings might fail working at home.
Always ask about other’s well-being, preferably gently, and be prepared to help. But please don’t do it in a toxically positive manner. There is no place in Coronavirus for toxic positivity. Authenticity will get you a lot farther. And I will never unsubscribe from that.