Fighting Medical Bias
The recent COVID-19 pandemic and increased need for urgent medical treatment has brought an upsetting issue to the fore: medical bias against people with disabilities and chronic conditions.
Unfortunately, as long as there has been disability, there has been bias. And there’s a significant (and valid) concern that people with disabilities seeking life-saving treatment may be put at the back of the line because they are viewed as too sick or their life not being important enough to save.
Medical discrimination is not new
The history of this issue goes way back, but the National Council on Disability released a Bioethics and Disability Report Series just last year that revealed: discrimination in organ transplants for people with disabilities (denying them organs to save their lives), discrimination using genetic testing results, using biased “quality-adjusted life years” assessments to devalue the lives of people with disabilities in order to deny them care, and denying medical treatment for people with disabilities by claiming it would be futile.1
Worsening bias due to the pandemic
These reports detail many ways that people with disabilities are being denied medical care in typical healthcare interactions. Unfortunately, the pandemic is potentially making medical bias issues worse in areas where many people are seeking care. Healthcare systems are struggling with shortages of beds and equipment, and people with disabilities and chronic conditions are at greater risk of serious health consequences from the virus.2
Denied medical care
Many media outlets have published articles about the concerns of people with disabilities with the medical rationing that can happen in the crush of pandemic treatment. For example, NPR interviewed a quadriplegic man who was hit by a car and denied surgery to repair a fractured hip because of his paralysis and inability to walk. He’s still living with the consequences and increased disability from this decision years later.2
Adequate treatment for people with disabilities
What happens when a person with a disability goes to the hospital with COVID and is denied a ventilator because the medical people don’t think they will live long or well with their disability or health conditions? These are the questions being asked by many people with disabilities and chronic conditions.
Some states have “crisis of care” or triage guidelines that specifically put people with disabilities at the back of the line for life-sustaining treatment. One state said if a person with a disability already uses a ventilator to breathe, it would be taken away from them at the hospital and given to someone else judged to be in better health.2
Addressing discriminatory healthcare practices
Advocacy groups and the federal government have been decrying these types of discriminatory practices.3 Some groups have brought lawsuits resulting in changes to these guidelines. The U.S. Health and Human Services Office for Civil Rights has investigated several states and pressed them for positive policy changes.
The discriminatory guidelines are wide-reaching, targeting older adults, people with dementia, people with intellectual disabilities, and many others.4 In many cases, they are so arbitrary and focused on excluding people with disabilities from care, that you are left to wonder: have they spoken to the patient? Seen their loved ones? Considered that they may actually be in better health than supposed able-bodied people?
Fighting medical bias
It makes me think that when some medical people look at me, they only see my rheumatoid arthritis, difficulty with walking, and other supposed medical failures. They don’t see how I have recovered from many health issues, or how I have the heart of a fighter, or that I live a very full and busy life with my health conditions. While I know treating patients during a stressful emergency situation is difficult, we cannot ignore the humanity and value of each individual.
Advocating for our care
With this in mind, patients need to be ready to advocate for themselves (or charge a friend or family member to advocate for them). It’s important to ask right away about medical rationing or triage policies at your preferred treatment facility. Understand how they will look at you and treat you. Will they examine your unique history and health background? If not, reconsider going there and find a place that will provide equal treatment!
Respect disability rights
Ask if they will respect disability rights and not lean on broad diagnoses or disability status to decide if you should receive life-saving care. The goal is to have a medical team that will look at the details of your past and current health to get a real assessment of your needs in order to provide truly proper care.
How often you do experience an unexpected boost of energy?