Disabled People Are Tired: Public Health and Ableism

Disabled People Are Tired: Public Health and Ableism

 

Christine Mitchell

 

I’m tired.

We’re all tired, collectively. It has been a long two years of heightened anxiety and isolation as we learn how to live within a global pandemic leaving nearly a million people dead in the US – far more than any other country in the world. We’re burnt out from all of the ways that COVID has forced change in our lives. Healthcare workers are burnt out from the seemingly unending flood of patients in serious, sometimes fatal, condition. Public health workers are burnt out from trying to manage as much as they can in their local contexts, while facing chronic underfunding and bureaucratic restrictions. Teachers, parents, children, community organizers: we’re all burnt out. The hashtag #DoneWithCOVID trended on Twitter recently, filled with stories from people who just want to “get back to normal.”

I wish I could be #DoneWithCOVID just like that, too. 

In the winter of 2018, I got the flu. I was in bed with a fever and body aches for a week and left with a cough that lingered for several weeks after. The cough was bad enough that I ended up in the emergency room with an inguinal hernia that could only be fixed surgically. A month later, I got the flu a second time. The combination of fever and cold medications threw my chronically off-beat heart into sustained ventricular tachycardia, a potentially fatal arrhythmia. A cardiac ablation to try to find and fix the arrhythmia meant another procedure under sedation and another overnight hospital stay. 

I have Marfan Syndrome, a connective tissue disorder resulting from a mutated fibrillin gene. Because connective tissue is what holds so much of the body together, many different body systems can be impacted by Marfan’s. For me, the main concerns have been my heart, blood vessels, and lungs – all of which put me at high risk with COVID-19, too.

So, when I’ve heard people – public health experts and lay people alike, on both sides of the political aisle – resign themselves to the idea that “we’re all going to get COVID at some point” or claim that omicron wasn’t worth adjusting our lives for because the symptoms are “mild,” these are my literal scars that get figuratively reopened. Mild symptoms for some are deadly symptoms for others. And with hospitals stretched at or beyond capacity, routine care for those with chronic medical needs has become more and more challenging to get as many continue to not make individual or societal adjustments to mitigate further spread. 

Our Disabled Lives Are Worthy

It is clear that the only way out of a global pandemic is collectivity, not individualism, but how are disabled people expected to hand our lives over to a collective that doesn’t seem to care if people like us live or die? How can we simultaneously hold our frustration with the choices of those refusing protective measures like masks and vaccines alongside frustration with the immense systemic failures of governance in how the federal public health apparatus has handled COVID-19, both in policy and in messaging? How are we to feel safe when federal public health authorities have advised that people can go mask-free, even knowing that people at risk of severe illness won’t get to stop? How are we to internalize, for example, CDC Director Rochelle Walensky’s comments earlier this year on Good Morning America that it was “really encouraging news” that 75% of the vaccinated people who have died of COVID-19 had four or more underlying conditions? 

Walensky’s comments led disability rights activist Imani Barbarin to create the hashtag #MyDisabledLifeIsWorthy, which disabled people all over the world used to share why our lives are not disposable and our deaths are not encouraging. While CDC damage control included releasing the entire context of the interview and holding a meeting between Walensky and a group of disabled activists, it is clearly not enough. Not even two months later, on a podcast, Walensky referred to masks as “the scarlet letter of the pandemic,” because they are “inconvenient” and “annoying,” before easing masking guidance days later. The disability community demands more. Abled people’s convenience is not worth more than disabled people’s lives.

Public Health’s Historical and Contemporary Maintenance of Ableism

It is beyond time for those of us in the field of public health to understand disability justice as a public health mandate. Disabled people are disproportionately those who have been structurally marginalized and thrust into conditions that create chronic illness: including Black, Indigenous, and other people of color; people without stable housing; LGBTQ+ people; older people; people who use substances; and people who are economically disenfranchised. With over half of those diagnosed with COVID-19 experiencing “long-COVID” symptoms 6 months after initially getting COVID and beyond, the disabled population is growing exponentially. If we – as a field – claim to care about health equity, we must listen to and learn from disabled people in a consistent, respectful, and sustained way and we must center disabled people in our policies and practices, throughout the pandemic and beyond. 

Historically, we have failed at this. The biomedical model that informed so much of public health research and practice throughout the twentieth century views illness as something purely biological and disability as something to be fixed or cured. The other dominant epidemiological model of the twentieth century came to focus on the ways that individual lifestyle choices and behaviors shape health. Both of these models concern themselves with treating the individual, largely without taking into consideration their surrounding social, political, economic, historical, and structural conditions. Both place responsibility for poor health on individual behaviors and, insofar as either of them even address disability, it is understood as something to be eliminated or erased.

Though some of us in the field of public health have moved past this framework, focusing more on the social and structural determinants of health, the field of medicine remains entrenched in the biomedical model and focused on the individual. In part because the figures that are called upon by the media and by policymakers to represent public health are often primarily trained in medicine (e.g. Rochelle Walensky, Ashish Jha, Leana Wen, or Anthony Fauci), we end up with messaging like, “this is becoming a pandemic of the unvaccinated” or the guidance for mask-wearing to be based on “personal preference.” The CDC has made COVID mitigation an individual concern rather than a collective one. Gone are the days of “I wear a mask because I care about you” – off into the historical archives of the CDC website. Immunocompromised and disabled people have been abandoned by policymakers and left to protect and advocate for ourselves, yet again, an experience that we’ve been familiar with long before COVID and an experience that continues now.  

Prior to my training in public health, I had contemplated going to medical school. I started a full-time pre-med post-bac program, but was in and out of the hospital every few weeks during my first semester. I eventually made the decision to leave the program in Philadelphia and return to Boston to be close to the hospitals where my care was well-established, but to continue taking pre-med courses there. I spoke with some mentors about how to explain in my applications why I left the full-time program and one said to me: “Explain that you had some health issues arise, but that they’re better now and won’t happen again.” I painfully explained that my illness was chronic and I was guaranteed to experience a lifetime of more hospitalizations. “Well, then you might want to rethink going into medicine,” they responded. It’s no wonder that only 2.7% of medical students identify as having a disability, thus perpetuating healthcare and policies that are harmful to disabled people. The culture of graduate education in general, including in public health, can be much the same. 

And so now, we are witnessing the direct result of an inaccessible culture keeping disabled people out of the academy, the field of public health, and the profession of healthcare. We are witnessing abled people making decisions that impact and endanger the lives of disabled people, without our voices at the table. We are witnessing the repercussions of ableism in public health, the result of decades of eugenicist research that incorporates disability as a negative health outcome to be eliminated, rather than incorporating ableism as a negative health predictor to be confronted and dismantled.  

On the individual level, we are witnessing, as disability justice and transformative justice writer and educator Mia Mingus recently wrote, immense abled entitlement and abled supremacy, which allows abled people to put the lives of disabled people at risk by refusing to be vaccinated, wear masks, or stop large gatherings without precautions. On the structural level, we are witnessing the consequences of generations of disinvestment in public health, the prioritization of profit over people, the deep-seated racism and white supremacy at the roots of this country, the value placed on individualism over collectivism, and the pervasive conception of elders and disabled people as disposable.

Endangering Disabled People’s Lives is a Policy Choice

The ongoing rate of COVID cases, hospitalizations, and deaths we are seeing in the US isn’t inevitable; it’s a policy choice. 

It’s a policy choice to lift mask mandates while we’re still seeing over 50,000 new cases and over 1,500 new deaths due to COVID each day – likely underestimates due to unreported cases. It’s a policy choice to ignore COVID as the ongoing mass disabling event that it is, by not funding research and resources for those struggling with long COVID. It’s a policy choice to not enact paid sick leave and paid family leave to cover all workers. It’s a policy choice to not invest in free childcare for all and healthy conditions for teachers and children in schools. It’s a policy choice to not continue recurring, direct cash stimulus payments so that people don’t have to put their lives at risk in their workplaces. It’s a policy choice to lift eviction moratoriums, conduct encampment sweeps, and fail to invest in affordable housing for all. It’s a policy choice to continue incarcerating people in the pandemic hotspots of jails, prisons, and detention centers, instead of decarcerating as many people as possible as quickly as possible, as countless organizers and public health professionals have demanded. It’s a policy choice to invest more into policing than public health, even in the midst of one of the deadliest disease events in US history. 

Public health must do better at challenging and undoing our field’s entrenched ableism.

We can choose a different way forward, a way that protects the health of all of us, starting with disabled people, those most at risk of morbidity and mortality, and those who have been historically and structurally marginalized. We must hold our government accountable for the policy choices that have led to the thousands of lives lost to COVID-19 every day in the US. We must create pathways for disabled people to enter the fields of public health and medicine and to help shape the policies that affect us. We must invest in public health research that addresses gaps in data about disabled people so that we can create inclusive evidence-based policy towards health equity. We must center disability and racial justice not just in word, but in action. We must continue to wear masks, get vaccinated and boosted, and engage in hard conversations with our families, our friends, and our communities to do the same. 

The pandemic isn’t over. Not for disabled people, immunocompromised people, children under 5, elders, or our families and loved ones. Not for the millions of people who have lost a loved one to COVID in 2022 alone. Not for the millions who have developed long COVID and continue to struggle with physical and psychological symptoms, months or years after having the virus. We must stop acting like the danger has passed.

The lives of disabled people are not expendable just because our societal priorities are not in order. 

We are tired.

 

ABOUT

Christine Mitchell is a public health researcher and advocate based in Oakland, CA. She is an organizer with the Boston-based DeeperThanWater Coalition and a co-author of the American Public Health Association policy statements on law enforcement violence and on carceral systems. She has a Master of Divinity from Harvard Divinity School and a Doctor of Science in Social and Behavioral Sciences from Harvard T.H. Chan School of Public Health. You can find her on Twitter: @Christine_ScD.

 

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