<aside> 🌟 Monica Albert Still has over 30 years of home care experience specializing in performance improvement and regulatory issues. She is committed to working towards the equity for disabled people in the healthcare system. Currently, Monica is focused on patient advocacy, making sure their voice is heard and listened to. Her narrative serves as a reminder that the principles of design have tangible implications in healthcare and broader societal accessibility contexts.
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Alt Text: Colored drawing of Monica in a white t-shirt, sitting in a wheelchair.
My name is Monica Albert Still and I was born with spina bifida. Right now, I am a registered nurse at the Adult Spina Bifida Clinic at University of Pittsburgh Medical Center (UPMC) where my goal is to change the way healthcare is delivered and influence health policy through patient advocacy.
Some people just know they want to be nurses. There were a lot of nurses in my family, so it might be genetic. Also, when I was a child, I spent a lot of time in the hospital, so I have always wanted to help people who are in the same position that I was in.
What really helped me with the decision, however, was a guidance counselor in high school that told me I couldn’t. I also originally had difficulty getting into nursing school because they assumed that if I had spina bifida, I couldn’t be a nurse. But if you tell me I can’t do something, I turn around and do it.
Part of nursing is being an advocate for your patient. I took on that role of advocacy and expanded it outward to the disability community and the community I'm a part of. The Americans with Disabilities Act (ADA) is 33 years old, and there is still a tax on it, restricting us from moving forward. People treat that as the end-all be-all of disability rights, and it’s not. It is the beginning, and we can't even focus on going beyond the ADA yet because we keep fighting the same fights over and over.
I have also learned that people don't think of disability unless they are disabled or they know someone who is disabled. There is a lot of education that goes with that and a lot of misunderstandings. While we may have laws in place to forward the disability justice movement, we haven't changed the hearts and minds of people, nor their attitude towards disability. Technology has changed quickly, but attitudes haven't, so that's why I do what I do.
I spent the better part of my career in home health care which helps keep people in homes and out of institutions. I’ve learned that as a society, we have not figured out that houses should be accessible because people want to age in place. They want to stay at home and take care of their loved ones.
There are not enough caregivers, which is something that sticks out to me. There are people waiting in nursing facilities to go home. There are people waiting in hospitals to go home. There are not enough caregivers, nurses, aids, PCA’s, to care for all these people. The pandemic affected all of this and shone a light on the problem that's already been there. When you see that much death and disregard from health care administrators, people begin to leave the profession. This affects patients because they can't go home. They can't see their loved ones.
We also don't pay significant others to be caregivers. We did during the pandemic but not now. This forces people to choose between having a job and supporting your family, and leaving the person you care for in an institution.