On March 12, 1990, more than 500 people gathered at the base of the United States Capitol and began to march. When they reached the west steps of the building, scores of them left their wheelchairs and mobility aids behind and started to crawl.
Step by step, on hands and knees, up 83 marble stairs.
They were protesting the delayed passage of the Americans with Disabilities Act (ADA), a civil rights bill that had been stuck in Congress for months. Some rolled up copies of the Declaration of Independence and carried them in their pockets. One activist said, “We are crawling into history,” while another, an eight-year-old girl with cerebral palsy, made it to the top of the steps while cameras looked on.
Four months after the Capitol Crawl, President George H.W. Bush signed the ADA into law.
This July marks 35 years. It is worth pausing on what it took to get there, and just as importantly, on what it meant for what came next.
A Floor, Not a Ceiling
The ADA was a turning point. It required that public spaces, employers, transportation systems, and communication tools be made accessible to people with disabilities. It gave legal standing to a population that had long been pushed to the margins.
One of the activists who crawled up the Capitol steps that day, Anita Cameron, reflected on what the moment meant years later: “We did it to show that we disabled people, as second class citizens, needed change. And the vehicle for how it was going to change was the ADA. But I think a lot of people forget that the ADA was the floor. It was not the ceiling. So, it was the beginning of rights for us, but it was not the end.” – PBS
As a society, we still have a long way to go in understanding that complying with ADA requirements is only the start of creating accessibility. For people living with spinal cord injury (SCI), additional progress needs to be made to allow for daily living that is fully accessible. Inaccessible healthcare settings. Public transit that doesn’t reliably show up. Communities, especially rural ones, where services for people with physical disabilities are so scarce that finding an in-person activity or a peer who understands your experience can take years. The law created enforceable standards, but standards are not the same as presence. A ramp gets someone through a door—it does not guarantee that there is something meaningful on the other side.
Choice as a Measure of Progress
In a world that was not built for people with disabilities, the ADA created a legal ground for change. What the law returned to them, more than anything else, was the opportunity for choice.
Where someone lives. What schools they can attend. The ability to get to a medical appointment independently, or try to participate in a sport, or show up to a community event without having to plan around whether the entrance is wide enough for your wheelchair. These are not luxuries. They are the texture of an everyday life and look different depending on where someone lives and what they need. For some, it means having a rehabilitation program nearby with the right equipment. For others, it means finding a community of peers for the first time. For people with SCI, access has grown meaningfully because of the law and the decades of work that followed.
What Access Can Look Like
Expanding opportunities is at the center of what Craig H. Neilsen Foundation grantee partners do, across community programs, rehabilitation settings, education, and research.
One grantee partner operates a therapeutic recreation program serving people with SCI from the earliest days of inpatient rehabilitation through years after discharge. The program offered community outings, adventure trips, and subsidies that help underwrite adaptive gear, from handcycles to sit-skis, to use independently at home. Participant surveys showed that, for most, this was the first time they had tried that type of activity since their injury, and that the experience increased their confidence to pursue it on their own.
Other grantee partners continue to focus on a different kind of gap: geography. One organization brought specialized rehabilitation equipment to a region that previously did not have it, meaning individuals with SCI no longer had to travel hours to access the same technology available at major centers. Working across urban and rural communities, another grantee brought peer support, healthcare information, and adaptive recreation directly to people. In rural communities, services for adults with physical disabilities are extremely limited, and the feeling of isolation is common. In these examples, people who had never had a peer contact, or a nearby provider who understood spinal cord injury, found a point of connection.
Research shapes that range of choice too. One grantee partner is developing a tool that uses clinical data to predict which individuals with SCI are most at risk for hospital readmission. The goal is to give providers an earlier window to act, so that a health crisis does not become the thing that interrupts someone’s life, job, or recovery. Staying out of the hospital is its own form of freedom.
35 Years In
The ADA was won by people willing to crawl up 83 stairs to be heard. That is still the clearest picture of what it takes to close the distance between where things are and where they should be.
Progress is real. And it is unfinished. Both things are true, and the distance between them is exactly where this work lives.