Nothing About Us, Without Us!

The slogan that rallied disability-rights activists in the 1980s was unmistakably present at the Aging and Disabilities Legislative Breakfast hosted by Elder Services and the Cape Organization for the Rights of the Disabled (CORD) on November 14. Deliberately elegant, “nothing about us, without us” conveys a core commitment to human dignity and self-determination. It insists on authentic participation—not just invitations to attend meetings or fill seats on committees, but environments, supports, and processes that give disabled community members real influence over decisions.

When it comes to aging and disability, nearly everything is about us—because we are everywhere. According to the CDC’s Behavioral Risk Factor Surveillance System (BRFSS), 28.7% of U.S. adults—about 70 million people—live with a functional disability. Only 17% were born with a disability; the vast majority acquire one during their lifetime. All who are living are aging, and many without a disability today will gain one over time.

At the breakfast, Meg Keegan, Ariel Stagg, and Dawn Erikson-Taylor made sure the Cape & Islands legislative delegation fully heard the message: “Nothing about us, without us.” Engage us not only when designing solutions but when defining the problems. Our lives extend far beyond the narrow issues policymakers often focus on, such as access to home health aides. This disconnect came into sharp relief when Douglas Eldridge noted that although nearly all newly built accessible housing units are single-occupancy, most people with disabilities live as part of a family.

The feeling of being excluded from policymaking surfaced repeatedly in the questions submitted to moderator Cathy Taylor. Representative Diggs described the overwhelming volume of daily emails legislators receive and highlighted the open office hours he holds every Monday morning to meet constituents where they are. Representative Luddy explained that her aide often becomes the quickest route for residents struggling to navigate state services like unemployment benefits. Senator Cyr reminded us that he has had people with disabilities on his staff and that most hearings and many committee meetings at the statehouse also offer an option for virtual participation. (See https://malegislature.gov/ for list of upcoming events.) The easiest way to stay informed about the bills and issues that matter to you is to register for a MyLegislature account.

Still, it is difficult to feel truly included in policymaking if the process itself is unfamiliar. Legislative procedures vary from state to state. For those seeking a clear, accessible overview, the Massachusetts Chapter of the National Association of Social Workers has prepared an easy-to-understand guide to how a bill becomes law in Massachusetts which can be accessed here.

Meaningful change begins when we show up and are heard. Learn the process, stay engaged, and call on our elected officials to do the same—because nothing about us should ever be decided without us.