President & CEO
United Spinal Association
The disability rights movement follows on the path of two centuries of people with disabilities organizing for the means for our independence and for social equality. That in itself took a fight to be recognized not as objects of charity—but as activists and advocates in our own right.
In the post-war era, our efforts coalesced into a modern social movement, with advocates joining forces on a cross-disability basis, demanding a right to education, employment, quality healthcare and independent living. Campaigns around Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA) put the movement on the national map, and local battles around issues like transit and housing built a formidable generation of organizers and advocates on the ground who ended up finding themselves on the national stage. If it were not for their passion, political savvy, and resilience, we would not be where we are today.
That’s what we mean when we talk about the power of grassroots advocacy. It was the self-empowerment of people with disabilities that brought us to where we are, from fighting for the ADA to fighting for our rights in every space of society where people with disabilities exist.
From the remaining civil rights policies that we have still not yet won, to the challenges and opportunities presented by a new era of corporate diversity, equity and inclusion (DEI) initiatives and the digital revolution—there is nothing we cannot take on, but only if we do it together—and so we must continue training and lifting up fellow advocates in our communities.
All of this takes seeing the advocate inside the people we know—grassroots advocacy enables ordinary people to accomplish extraordinary things. It is up to us to ensure that the Declaration of Independence rings true for our community: “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”
We have to remember that not every trajectory to becoming an advocate is straightforward and linear. On the other hand, I do know that there are landmark events for people with disabilities that encourage the kind of self-discovery that translates into action. Either way, it takes organization to translate that into meaningful advocacy.
My itch for advocacy started during my days at rehab. There were so many decisions being made on my behalf. Perhaps it was because it was all new, I was way too overwhelmed with all the changes caused by my injury, and I was heavily medicated. However, some of these decisions were not the right ones. I could course-correct some of them, but with others, it was already too late. Whatever the stated reasons for me to relinquish control over my own life and body, the loss of agency and disempowerment were real—and I never wanted to experience those things again. It was in that frame of mind that I discovered New Mobility magazine, which changed my life.
Returning to work fully planted the seed. I was left to advocate for myself because my company would not necessarily do it for me—not because of bad intentions, but because this was as new for them as it was for me. There are still things that I wish I had advocated for but did not have the courage to ask—that’s why having an organization and a wider community to draw upon for structure and dialogue is so crucial.
My true love for advocacy blossomed during my first Roll on Capitol Hill. That experience was like a light bulb suddenly switching on in my brain. I realized how powerful we could be when we work together: 100 advocates rolling together with one purpose in the seat of power of our nation. I learned how my voice and lived experiences were the sharpest tools I had to create change. I got a better sense of how monumental the goals were, but how accessible the world of advocacy is—the door is open to everyone with passion and a vision, and when we fill the room, it feels like nothing is impossible.
We really will need everyone in the room to bring about real change for people with disabilities. At my first Roll, I realized how frequent it is to encounter elected officials who know little about our history, rights and struggles: again, not necessarily because of a lack of caring, but a lack of exposure. I learned how imperative it is for us to be the ones that educate them—no one will speak authentically for us but ourselves.
Many years later, I am returning to Washington for this year’s ROCH, this time as the leader of the organization that gave me my voice and awareness of my potential as the master of my own political destiny. I still am propelled by the raw energy and sense of wonder that colored my first trip to DC with United Spinal, but with the tools, perspective and strategic judgment of a seasoned advocate. On the occasion of the tenth ROCH, I encourage everyone in our community reading this who has been curious about their potential or is passionate about our rights to join us on the road of making lasting change.
