Nothing About Us Without Us

There are a handful of people in life that make you stop, listen and act. Marca Bristo is one of those people.

A pioneer of the disability rights movement, she has spent the better part of the last four decades challenging people to stop marginalizing people with disabilities. Marca stepped down from her role as founding CEO of Access Living last week, and it is a moment in time to reflect on the role we can all play in carrying the disability rights movement’s civil rights message forward.

Five years ago, Marca challenged The Chicago Community Trust to use the 25th anniversary of the Americans with Disabilities Act (ADA) to engage the region in realizing the true promise of the ADA. She brought her internationally-recognized disability rights expertise and leadership to the steering committee that emerged. That anniversary message was simple—disability is a natural part of the human experience, and we all win when we are more inclusive. This is because disability intersects with just about every dimension of community life.

Understanding these intersections is critical for those of us working in philanthropy and social justice. There are more than 800,000 people with disabilities in the Chicago region and as our population ages, the numbers are growing exponentially.

Marca challenged The Chicago Community Trust to use the 25th anniversary of the Americans with Disabilities Act to engage the region in realizing the true promise of the ADA.

So what does it mean to take disability into account? We must explore how it intersects with all the issues we care about. There are people focused on affordable housing: clearly that’s an issue of importance to our neighbors with disabilities who may not be able to get up the stairs or use the bathrooms in much of Chicago’s older housing stock. Similarly, fill in the blank on the issue—workforce development, education, LGBTQ rights, health and human services, the arts, race and gender equity—and the answer is the same.

We are fortunate in Chicago to have learned from a strong leader like Marca, and doubly fortunate that she has built Access Living into one of the strongest Centers for Independent Living in the nation. And Marca reminded us also of the credo of the disability rights movement: “Nothing About Us Without Us.” Access Living, along with other organizations such as ADA 25 Advancing Leadership, continues as a key partner to The Chicago Community Trust to ensure that when we engage communities we remember to have the voices of people with disabilities at the table.

As Marca said in her letter last week, “The values our next generation of disability leaders will carry forward will change the world. In the words of our beloved Justin Dart: Lead on!” We look forward to working with her successors at Access Living and in the movement to ensure that we continue to move towards full equality for people with disabilities.