When the Americans with Disabilities Act was passed into law 24 years ago, the main call to action was “nothing about us without us.” Somewhere between then and now, the battle cry turned into a shallow echo. The ADA helped create a better physical environment in most places, but has fallen short of what it could do.

I had the honor of listening to a panel of politicians and leaders in Iowa, led by Senator Tom Harkin (D-IA), a tireless disability advocate. Each panelist spoke about the history of the ADA, its impact and what the future could hold. Four major points were emphasized: equal opportunity, full participation in society, independent living and economic self-sufficiency.

Opportunities have increased, as have options to participate in society, but there is a lot of work left for us to increase independent living and financial self-sufficiency for those with disabilities. Many nondisabled people have no reason to think about what it would be like to be a person with a disability until they become one or become close to a person living with a disability. I know that before I became a wheelchair user in 2003 I didn’t have a clue — even though I was learning to be an occupational therapist who works with people with varying disabilities.

This is a problem because current public, medical and legislative policies and programs do not promise full participation and the same full rights. The only way change happens is if enough people speak up and share the inequities that still exist. There is a younger generation out there that wants to fight for increased rights — to work, to play, to live where they want. There is also an older generation of baby boomers who will begin to have more disabilities. They too, will demand access to their grandkids’ games, to local restaurants and for the same level of medical care and opportunities as they had when they were working. Living with a disability can be lonely and isolating. Some of us don’t have the opportunity to live in the community and are still living in nursing homes. Some of us can’t work as much as we would like because if we do, we could lose all our benefits, services and supports. Some of us live in communities that lack access to restaurants, churches and parks that our friends and family attend. Some of us don’t even have the transportation or equipment to get outside our own residences.

As human beings, we crave to be part of something bigger than ourselves, to be appreciated for who we are and the gifts we have. A large portion of our society still chooses to look at our “dis” abilities vs. our abilities. As UsersFirst has evolved, it has created its own “tribe” —  a group of people connected to one another and connected to an idea. Initially, we were focused just on people getting access to the right equipment or complex rehab technology, but it has become something more. This idea has helped create a group of people who feel empowered to share their stories, to encourage others to self-advocate, and it has helped nurture a common thread of creating positive change at a grassroots level. We have become the embodiment of “nothing about us, without us.”  We are creating policy change that will impact all of us and also future generations.

As we prepare for the 25th Anniversary of the ADA next summer, it is time for our tribe to work together, to think of ways to bring awareness to complex rehab technology, the ABLE Act, the Olmstead Act, accessible transportation and protection of social security benefits — causes that can improve the quality of life for our community while also shaping how others view us. We need to be active in communicating with our leaders in our communities, our states and in D.C. We need to stay connected. If you have any ideas or want to get more involved with this amazing group of advocates, go to www.usersfirst.org or our Facebook page.