Disability and Health Care: A Conversation with Activist Alice Wong

Photo of Alice Wong in a power chair. She is wearing a blue sweater. She is holding a copy of her memoir, Year of the Tiger. In the background is a gray cement wall.

Alice Wong holds a copy of her memoir, Year of the Tiger: An Activist's Life.

Alice Wong is a disabled activist, writer and founder of the Disability Visibility Project, an online community dedicated to creating, sharing and amplifying disability media and culture. Wong previously worked as a staff research associate in the School of Nursing and she was an inaugural recipient of the Chancellor's Disability Service Award for her work to advance access for and accommodation of those with disabilities.

Reflecting on her own experiences, Wong discusses what must be done to change the American health care system and the role every person can play.

Q. What changes are needed in our nation's health care system to better support individuals with disabilities?

So many! A few months ago, states across the country started resuming the annual determination process for Medicaid which will kick out millions of people who enrolled during the pandemic when there was a rule barring states from disenrolling people. There are people who are uninsured and underinsured because we live in a society where insurance is tied to employment and other forms of insurance have high co-pays. 

For people like me who rely on Medicaid (Medi-Cal in California), we have to abide by strict asset and income limitations. The primary reason why I am on Medicaid is because it is the largest payer of long-term services and supports that allows me to live in the community. Medicaid is a lifeline for me, but there is still an institutional bias since community-based services are still considered an option and many states have huge waiting lists of disabled people who want to live in the community. 

Many disabled people who need certain prescriptions, medical equipment, hours of personal care, or treatments/procedures have to go through inordinate steps to get them covered or are rejected for them outright. It is a shame that so many people are in medical debt or have to crowdfund to cover their costs in this country.

If we are talking specifically about medical education, it’s still an incredibly hostile environment for students from marginalized communities. The Darwinist culture of medicine forces students to hide their disabilities, makes them afraid to seek help and produces mental health disabilities due to the stress, rigidity and structure of the health care environment – for both students and employees.

Q. How did the COVID-19 pandemic further highlight these inequities?

During the pandemic, more than 200,000 residents and staff at long-term care facilities died. I did not see the outrage about disabled and older people dying at such high rates, which is due to societal indifference, ableism and ageism. As a high-risk disabled person, I felt that the state of California deprioritized people like me when distributing the vaccine during the initial rollout, and I saw how health care systems in some states had to initiate crisis standards of care/triage protocols that blatantly discriminated people with disabilities. In fact, several disability rights organizations filed a complaint to the federal government regarding denial of care and medical rationing. Many of the measures of quality of life and survivability from COVID are based on ableist ideas of who is more likely to have a “successful” outcome. 

Based on my diagnoses, lung function and other measures of activities of daily living, I look objectively like I have severe impairments and someone who will require a significant expenditure of resources to keep me alive. But that is not the sum of me. Does that mean I am not worthy of care? I need total help with my daily care routine, requiring technology, durable medical equipment and a team of caregivers, but I self-rate my quality of life as high because one cannot separate the biomedical from the social. 

In addition to the lack of accessibility and accommodations (even though they are protected under the Americans with Disabilities Act) in medical facilities and existing health disparities, disabled people – particularly people with invisible disabilities like pain or chronic illness – are often not believed when they seek help. Right now, there are health care professionals who minimize and scrutinize people who are dealing with the effects of long COVID since it is still under researched and misunderstood. And this is only compounded if you look at people who are not men and/or people of color who are not believed. 

Q. How can folks be allies to those with disabilities navigating the health care system?

We don’t need allies; we need co-conspirators. We need people in power to change policies and practices. Budgets are a reflection of values. Why can’t every exam room have a height-adjustable table? Why do deaf patients still struggle to get ASL interpreters or communication access in hospitals? Why are people with intellectual disabilities still underserved by health care professionals? Why is there not enough funding to research long COVID? Why are rare diseases not a priority among researchers? Why are people with disabilities absent in clinical trials?

I would like to see health care professionals speak up and fight for their patients when they see something wrong happening. We also need more disabled people in the medical professions whether they are educators, administrators, technicians or providers. 

The issues are complex and often go beyond the clinical setting, but everyone can use their voice and identify systemic problems. That’s a start at least. 

Q. You recently published a memoir, Year of the Tiger: An Activist's Life. What impact do you hope sharing your story will have?

It’s pretty clear that I am passionate about creating change. I am a disabled person born in a non-disabled world that was never designed for me. I hope that my memoir, Year of the Tiger, will show people the way ableism is baked into our society and how we can all be activists in our own way and show up for others. 

There is a chapter about my experiences as a grad student at UCSF and why I was not able to complete my PhD program. There’s another chapter where I am in conversation with Eric Koenig, the former director of the UCSF Office of Student Life, on how I advocated for physical access at the Parnassus campus. I think any alumni or current student, faculty, and staff at UCSF could learn a lot from my experiences. Also, there’s a free discussion guide if anyone on campus wants to start a book discussion group or include it on their syllabi.