The onus is on white people to combat racism by acknowledging our privilege, examining and changing our behavior, and speaking out against racist policies and institutions.
It is the responsibility of men to make existing safe for women by looking within themselves, understanding how they’ve contributed to a culture that is dangerous for women, and resolving to be better men.
These two truths of these essential fights have been accepted by progressive people and while there is still a very long way to go in improving both areas, progress is slowly being made despite inevitable backlash and resistance.
Why then, is it not accepted — or even acknowledged — that it is up to healthy and non-disabled people to force change in the healthcare and pharmaceutical industries?
When will we, people with chronic illnesses and disabled people, call on our healthy peers to be allies and acknowledge their tremendous privilege and put their power to work? It’s time for us to refuse to accept the narrative that they’ve worked hard for their good healthcare and insurance and therefore they are more deserving of it than we are.
Healthcare is not an achievement. It’s a right that needs to be won for all of us.
We’ve so deeply embedded into American rhetoric the bootstraps dogma that we’ve deemed anyone unable to pull themselves up by these storied bootstraps as being not only the cause of their own problems but a burden on society and not deserving of a good life. Or worse, not deserving of a life at all.
I have had the “I worked hard for my living” conversation too many times to count and as I get older, the more it hurts. I see my peers living the lives expected of someone in their late 30’s. They’re buying expensive skin care regimens and houses, having cellulite treatments and going to professional development conferences. And me? I’m making the decision between being financially stable and being alive every week, groceries or medications. My experience is far from unique.
Why the disparity? Quite simply because they had the good fortune of being born healthy and being able to take for granted all the privilege that comes with it while I was born with an autoimmune disease.
Sometimes the person I’m having this conversation with is so offended that I had the nerve to make them uncomfortable by suggesting they are privileged that it never gets farther than,
“I worked hard to get where I am, I deserve to reap the benefits.”
“So you’re saying that I don’t work hard? Or that I don’t deserve benefits that allow me to stay alive?”
And that’s where it ends because they’re not willing to be uncomfortable even for a moment.
Sometimes though, I get a little farther and they ask,
“Okay, so what do you think I can do? Boycott my doctor or insurance? I’d go bankrupt if I paid for my birth control out of pocket. I can’t risk that.”
“So you see the problem then?”
Am I asking people to sacrifice their health and annual wellness visits in solidarity? Of course not. It would be interesting to see how people would endure if they had to go even a month without the good health and access to healthcare they’ve long taken for granted, but no, I’m not expecting anyone to make a dangerous sacrifice.
So what do I think healthy and insured people can do?
First and foremost, remove from your mind that productivity equals value. You work hard and have a steady and well-paying job only because you’re able to. Your ability to hold the type of job that provides you with a nice benefits package does not make you more deserving than anyone else. People are more than what they can produce.
Secondly, realize that money talks and be willing to sacrifice something temporarily. Change your behavior in order to make access to healthcare possible for us. Can you imagine how quickly the pharmaceutical industry would change if you brought cancel culture to it? If you made choices that ensured that every single executive in the industry who slept peacefully at night knowing they’ve inflated the price of a drug people need to live by 2000% suddenly stood to lose everything? This is true for the insurance industry as well. Neither will ever change unless those supporting them and benefiting from them (i.e. healthy people) make them.
Lastly, get uncomfortable. You should be. Why? Because that’s how change happens. For far too long, chronic illness, disability, and the poverty that so often accompanies both have been taboo topics. You pay your monthly premiums and copays without a thought for those who can’t do the same because the system works for you and you’ve never been made to look at how we live. And we let it continue because we don’t want to be a downer, we don’t want to burden you or make you uncomfortable because too often, that’s a condition of your friendship.
I want to burden you and make you uncomfortable. I need you to see and feel that the American healthcare system that you participate in without much thought is killing us. I need you to start asking why and saying no. Why, Aetna, is my cosmetic laser hair removal covered by my policy while you force people with chronic illnesses to pay an exorbitant premium and deductible for basic care? No, Pfizer, I will not get my Viagra for $15 until you stop charging $12,000 for breast cancer drug Ibrance (prices from GoodRx).
Chronically ill and disabled people need you to change your behavior and be uncomfortable temporarily so that we can live. The fight for access to healthcare and affordable insurance is never going to be won unless those who enable the current system carry it. Without your help, we’re going to continue to suffer and die.
We need that truth to make you wildly uncomfortable.