The 2021-2022 NACCHO Health & Disability fellows had the opportunity to travel to Washington, D.C. to attend the Disability Policy Seminar 2022, an annual conference co-sponsored by national disability organizations, where attendees receive training and learn about policy updates that impact the rights of people with disabilities. The aim of the seminar is to “promote unity, movement building, and amplify the concerns of people with IDD [intellectual and developmental disabilities] before Congress.”
Here, the fellows reflect on the conference and what they are bringing back as they continue their journeys as budding public health professionals.
I always thought of myself as a researcher, never as an activist. While I could appreciate and stand in solidarity with those that protested outside of buildings, posted concerns and demands on social media, and were outwardly expressing concerns for issues they were passionate about, I never saw myself in that light. However, a past mentor helped me realize that the research that I was conducting was activism in my own way and that being an activist didn’t mean that you had to go out and protest but be a person that helps to bring about change in our society.
During my time at the Disability Policy Seminar (DPS), I had the opportunity to meet disability advocates and allies and learn from leaders in the field about what is happening in the legislative world and how we can continue to educate Congress about policies that can empower people with disabilities.
I distinctly remember having a conversation with a gentleman who had been attending the seminar for years and been in the field for over 30 years about how much he used to hate researchers. He told me before the passing of the Americans with Disabilities Act of 1990, he would never bring any statistics or research to his meetings, he only relied on the stories of people with disabilities that he had met to make his point, drawing the feelings of sympathy and empathy. However, over time, he came to realize the power of research, and strengthened his arguments by using both personal stories and statistics. Having only spoken to me for a few minutes, he apologized to me for his ignorance all those years ago and told me how happy and excited he was to see a young, budding researcher here at the conference.
After three days at DPS, I continue to see the importance of my “activism” and how my research helps to drive further policy development. My research interests in environmental health do not necessarily scream disability, but our built environment plays such a huge role in pre- and post-natal development, which makes disability intertwined in everything that I study. The conference helped me re-ignite my passion and made me excited for my future to come as a researcher and academic. I have no idea where my studies and career path will take me, but I can guarantee that disability research and policy will be incorporated in any way that I can. I never expected to be down the path that I was on a few years ago, but the twists and turns are what makes life that much better.
Sometimes the biggest activists are those that say the least. And while I may not be at the protests and rallies, I’m being an activist in the ways that I am most comfortable and the ways I know best—as a researcher.
Before detailing exactly what made the Disability Policy Seminar (DPS) such a significant experience for me, I want to acknowledge that I would not have had the chance to attend if not for the position as a Health and Disability Fellow. I am immensely grateful for it. I am thankful as someone living with non-visible disabilities to have sat surrounded by stalwart champions of disability rights. Together at the DPS, we were allowed our frustration and anger. We shared in our sadness and collective grief. We could speak and understand the difficulty that is navigating communities that most often consider our needs as an afterthought. The markedness of the Disability Policy Seminar is that it was a living scrapbook of the disability experience in the United States from people who knew almost nothing about one another, and it was beautiful. I am grateful for the opportunity to experience it.
The night before the first conference sessions I thought to myself, “This is a once in a lifetime opportunity for me, these are people who will understand,” and decided to avoid masking. Masking amongst neurodivergent communities is considered ‘social camouflage’. It is an act or set of actions that seek to minimize or change one’s behavior to conform with those considered societally acceptable. Surrounded by self-advocates, friends, and loved ones with or of people with disabilities, I was tentatively optimistic that they would avoid perpetuating the centering and validation of a disability experience that is primarily white. I was nervous. Blackness, queerness, being gender non-conforming, these aspects of my identity were notably off-color in a conference setting – how would my disability experience muddy this? I found my worries were unfounded.
Attendees at the Disability Policy Seminar were warm and welcoming in ways I’d only previously felt in my ancestral home surrounded by family. Light chatter about parking meters and what I felt were quarter-hungry city streets became discussions on the accessibility of transportation and maintenance of city roads and infrastructure. Expressions of need or requests for accommodations of all forms were encouraged and eagerly made. My voice in conversations of access and equity was sought out. This was one of the few times in recent memory that I felt valued for the nuance and unique product of my lived experience. The Disability Policy Seminar was not simply an opportunity to learn about current disability legislation, but a chance for us to come together for each other and share this sort of communion. It was incredibly powerful.
Some of the most moving parts of the DPS were those that allowed us to hear, and be heard by, fellow self-advocates. From our peers from across the country, we could offer support and encouragement and receive that same support and encouragement in turn. I have found it’s difficult to live at the intersection of multiple marginalized identities and keep heart to advocate for change. I do work around disability inclusion and disability community constantly but am often forgotten or neglected in work from others. As self-advocates, we must be prepared to face ableism and discrimination each time we express our needs, but what do we do when we’re exhausted? How do we keep that fire for change lit? These are difficult questions and my experience at the Disability Policy Seminar offered a solution: we find community.
It is true that every day we, as people with disabilities, are tasked with advocating for ourselves, but we are also fighting for others. On the days I feel most willing to accept a lack of accommodation that is well within my rights, I feel I must remind myself that change doesn’t happen when we’re silent. The people around me at the Disability Policy Seminar, they weren’t those that able-bodied and neurotypical folks consider “inspiration porn”. Their disabled bodies and experiences did not, and will never exist, as a feel-good story for the media. When we accept the inequity of our treatment, we may internalize notions that our needs are not worth fulfilling when the reality is that ableism towards some of us hurts all of us.
I believe it is a profound and rare experience feeling intimately connected to a group of strangers through shared experience alone. I was surprised to take this from the Disability Policy Seminar. Over those three days, that connectedness and acceptance left me impassioned to pursue lasting change within our communities and reaffirmed my belief in the sanctity of a collective identity. As I complete my degree and strive for equitable communities for all of us, I know these experiences will stay with me. We can mobilize in dissent, or at least find solidarity in each other.