​Doctors' Perceptions of Disabled People Put Our Lives at Risk

Posted by Stephanie Woodward in Life After Paralysis on March 09, 2021 # Health, Lifestyle

By guest blogger Stephanie Woodwarddoctor and patient

A study published in February 2021 reveals that 82.4% of doctors believe that people with significant disabilities have worse quality of life than non-disabled people, only 56.5% of doctors strongly agreed that they welcome disabled patients in their practice, and even less – 40.7% – feel very confident about their ability to provide the same quality of care to patients with disabilities. Despite these findings that demonstrate a disparity in how doctors view their patients with disabilities, only 18.1% of doctors strongly agreed that the health care system often treats disabled patients unfairly.

But are these findings all that surprising? Studies throughout the decades have measured how doctors perceive the quality of life of people with disabilities. The outcomes are the same: doctors believe we have a lower quality of life than non-disabled people. For example, in a 1994 study, emergency healthcare providers rated the quality of life and self-esteem of people with spinal cord injuries significantly lower than how people with spinal cord injuries rated their own quality of life and self-esteem. Two decades later, a 2015 study found that unconscious bias among doctors resulted in lower quality of care for disabled and LGBT patients. Doctors even disagree with parents of children with disabilities – like in this 2014 study where parents rated the quality of life for their disabled children much higher than the doctors rated their quality of life.

When doctors view us as having a lower quality of life, the results can be deadly. If the people charged with saving our lives do not view us as having lives worth living, how much effort will they put into saving us?

Unfortunately, the pandemic has given us the answer – and it is not good.

When the pandemic began, states and hospitals across the nation began creating "priority lists" for who should receive life-saving treatment, and people with disabilities were at the bottom of the list time and time again. States, hospitals, and doctors continued to discriminate against disabled patients, even though the Federal government issued a bulletin in March of 2020, stating that "persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of the quality of life, or judgments about a person's relative "worth" based on the presence or absence of disabilities or age." In New York, the Disability Community sued Governor Cuomo over state policies that allow personal ventilators to be confiscated from people with disabilities living in the community and given to hospitals to distribute to people who were "more likely to survive" in the pandemic. In Texas, doctors refused to provide life-saving treatment to Michael Hickson, a quadriplegic, because the doctors did not believe Mr. Hickson had any quality of life. In fact, when Mr. Hickson's wife recorded her conversation with the doctor treating him, the doctor stated, "as of right now, his quality of life — he doesn't have much of one." Ultimately, Mr. Hickson died.

As vaccines became available, discrimination against people with disabilities continued. Despite people with disabilities being recognized as "high risk," many states have not prioritized people with disabilities for vaccinations. In fact, the COVID-19 Vaccine Prioritization Dashboard was created by the Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities to track how each state is prioritizing the Disability Community for vaccination of COVID-19. The dashboard shows that most states are still not prioritizing people with disabilities. Of course, failure to prioritize people with disabilities for vaccination can be deadly, especially considering all of the evidence that demonstrates that doctors have failed to provide life-saving treatment to COVID-positive disabled people over the past year.

Unfortunately, there is no quick-fix solution for the discrimination that people with disabilities experience when it comes to healthcare. While many believe that increasing the amount of medical professionals with disabilities and that educating medical students on how to care for patients with disabilities would improve healthcare for disabled patients, those solutions will not help us with the dire situation we are faced with today. Instead, people with disabilities should educate themselves about their rights. If you need to go to the hospital for COVID treatment, be sure to bring a copy of the HHS bulletin to the hospital and have friends or family who can advocate on your behalf if your rights are violated. People with disabilities and allies can also advocate for inclusive vaccine rollout plans so that disabled people who need the vaccine sooner can actually get it.

Stephanie Woodward is an attorney and co-founder of Disability EmpowHer Network. Stephanie is passionate about seeking justice for marginalized communities - and has an arrest record to show for it. As a proud disabled woman and civil rights activist, Stephanie is committed to bringing more women and girls with disabilities to the forefront through mentoring and activism.

This project was supported, in part, by grant number 90PRRC0002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.