A Bootless Man

“Now I believe we ought to do all we can and seek to lift ourselves by our own bootstraps, but it’s a cruel jest to say to a bootless man that he ought to lift himself by his own bootstraps. Many [of us], by the thousands and millions, have been left bootless as a result of all of these years of oppression and as a result of a society that deliberately made [us] a stigma and something worthless and degrading.”-paraphrased

– Reverend Dr. Martin Luther King, Jr. MLK on Genuine Equality – NBC News

Shaking in my boots

Oh! That’s right. Many of us who live in the sickle cell community do not have the proverbial “boots,” although many would tell us to “pull ourselves up by the bootstraps,” but fail to realize we don’t have any boots; we were never given any and never given the access to acquire them. Sadly, sickle cell patients, face structural and institutional systems of discrimination and stigma in the general society and in the healthcare setting. Our community encompasses various intersectional and complex identities that further complicate the care we receive. We have no “boots” to pull ourselves up by.

There are structural barriers that hinder people of color, non-Christians, disabled people, and people with different sexual and gender identities. Add that on to having sickle cell, and health equity is severely diminished. Privileged individuals believe that all people must do is pull up their bootstraps because, in essence, that’s all they have had to do or are even capable of doing to have opportunities presented to them. Due to centuries of unfair treatment, people of underserved backgrounds must work doubly hard to get just a fraction of the opportunities that those in the majority enjoy.

This also rings true with healthcare. Sickle cell patients are suffering and too often facing life-threatening problems that could be alleviated with a commitment to reduce and address the blatant disparities when it comes to prescribing opioids and treating the disease over the life course.

Just as the Reverend Dr. Martin Luther King, Jr. said, many Americans, especially those with sickle cell like me, don’t have boots due to the centuries of oppression we’ve faced. Understanding centuries of injustice should provide a lens to understand that we need “justice [to] roll down like water and righteousness like a mighty stream.”

These are not just frilly words to proclaim over a pulpit or in a dissertation, these are words that also need to find their way into the healthcare system, and healthcare research. Providers, researchers, and a myriad of stakeholders in this community need to recenter their motivation for caring for the sickle cell population, and ensure that discrimination and stigma are eliminated, thus helping to break the sickle cycle.

There is hope for sickle cell

I always believe that hope is imminent. I believe that there is hope. I cling to it. I wake up every day actively working toward and looking for it. I am wild enough to think that there are many streams of dripping water here that will wear a hollow in the stone. I wholeheartedly believe that we will see “mighty floods of justice and an endless river of righteousness….”

We have seen a renewed interest in sickle cell research, industry interest, and overall stakeholder interest. More doctors are eager to learn about and take care of sickle cell patients, and government lawmakers seem to be interested. This is our time to strike while the iron is hot.