A Conversation with Andrea Dalzell

Andrea Dalzell is the people’s disability rights advocate. As someone who has used a wheelchair full-time since the age of twelve, she understands what it’s like to constantly come up against barriers because life is built for the non-disabled. She challenges this narrative daily as “The Seated Nurse” – the first and only registered nurse in a wheelchair in all of New York State. Andrea’s advocacy has won her national recognition over the years, including being named “New Mobility’s Person of the Year” in 2021. She has also been featured in publications such as Unite Spinal, HomeCare, and Forbes.

What inspired you to become a disability rights advocate, and what drives you to continue this work?
When I was in the healthcare space, I wanted to speak up for myself and make sure people around me knew what I wanted, and I wanted them to know that I wasn’t just going to allow them to dictate what they wanted for me or what they thought was best for me. Not allowing other people to speak for me was my first step into becoming a disability rights advocate. It allowed me to speak on behalf of other people who felt as if they weren’t being heard and ultimately inspired me to continue being an advocate on a much larger scale. Today, I am highly educated and aware of the healthcare system, not only because I’m a nurse, but because I’ve been a patient for the majority of my life. I now advocate for people on a whole different level, not just in the healthcare space, but in all aspects of life.

How do you think being an African American with a disability has impacted your experience navigating the healthcare system, and how can we work to create a more inclusive system for all?
I think we need to understand the severity of this question. Being an African American, in and of itself, is really hard in this nation, period. This is compounded by the fact that African Americans, who also have disabilities face disproportionate healthcare disparities and face significant challenges accessing the type of care needed to survive. This includes bias discrimination, lack of cultural competence, misunderstanding of diverse experiences, and the economic barriers that hinder someone with a disability from getting healthcare resources. To create a more inclusive healthcare system for all, first and foremost, diversity, inclusion, and equity must include access. Understanding that even though many people face discrimination, these stigmas need to stop at the head of healthcare, because healthcare takes care of everyone. Every single human being needs it.

Can you talk about a particular moment or experience in your advocacy work that has been particularly meaningful or impactful for you?
There is one specific moment I love to talk about, and I think it is because it speaks to the struggle that I’ve been through. When I was a nursing student, I was asked to check in and help out with a patient that everyone had been rude to. I roll into the room and she looks at me, and she starts crying immediately. I wasn’t sure why she was crying, so I tried to figure out what was wrong with her. She finally looked at me and said, “I thought my life was over”. She sat in the hospital bed thinking that her life was what her diagnosis was and that as a person with a disability, her life was over at that very moment. Seeing me move around to help her and take care of her in my chair gave her hope for a future. Giving that person a future that they didn’t see as even a possibility before, was an incredibly impactful moment.

What advice would you give to individuals or organizations looking to become more involved in disability rights advocacy, particularly within the context of the African American community?
I think it’s extremely important to realize that we cannot be performative when we want to include diversity, equity, and inclusion. The number one thing we have to understand is that our education cannot be linked to our own biases. The only way to start by advocating for disability rights is by educating ourselves on what the specific challenges are, and what this community is actually facing. There isn’t advice anyone can give, we just need to learn. Read, attend conferences, and listen to people already speaking about it. Connect, collaborate, reach out, and don’t tokenize any one demographic. Educate yourself.

How do you see the disability rights movement evolving in the years to come, and what do you see as the key challenges and opportunities ahead?
Disability itself encompasses so many different demographics. Right now there are many different demographics under fire. Other people are making decisions for these people and their lives and their livelihood, and we must realize that we’re also affecting people with disabilities within those demographics. So when we’re thinking about the movement, what movement are we really having if they are all under fire? I have so much hope for the future. We’ve made significant progress, but The Americans with Disabilities Act (ADA) law was built and signed in 1993, and 30-plus years later we’re still not enforcing it. If the ADA held any real weight then these other segments of intersectionalities would not be under the same fire that they’re under. To achieve full equity and inclusion for people with disabilities, the conversation needs to be had at the beginning and should not be thought of in the middle or the end. Society has to include the physical space, digital technologies, and the social attributes people with disabilities need when thinking about the future. But, we shouldn’t really be thinking about the future, we should be thinking about the ‘right now.’ What can we do right now? Right now is what we need to fix. Right now is broken.

In your opinion, what role do allies and advocates from other communities have in advancing the cause of disability rights, and how can we work together to create a more inclusive world?
Community usually starts with our family and friends. We voice our concerns to them and then they go out into the world and voice these concerns to other people. It’s kind of like playing the telephone. By doing this, we hope that the message gets across all the way through but that’s usually not the case, and we see this in a lot of movements. We forget to come back to the person who’s asking for something to change. Allies play a crucial role in advancing disability rights and raising awareness and understanding. If someone is simply asking for you to hear them out or to see something is unjust, speak up on their behalf and show them that you understand that human need is far beyond your own. We need to change and promote attitudes of respect and acceptance. Not only for people with disabilities but for everyone in general. We need to meet people where they are in the world, speak up for injustice, and be more inclusive. Listen, write, amplify voices, and collaborate with people who we normally wouldn’t to build that diverse perspective that we so badly want. If we want to ensure that we’re creating an inclusive world, we must incorporate more than those who are just around us.