Celebrating Olmstead, and Acknowledging Work That Still Needs to Be Done

On Tuesday, June 22, 1999, I was likely participating in a high-intensity practice for my soccer team full of fellow 4-year-olds, the Blueberries (yes, our jerseys were navy blue). I know now, twenty-five years later, that something much more significant happened that day—the U.S. Supreme Court handed down a landmark decision in Olmstead v. L.C.

This month, ANCOR got to sit down with someone who helped make that day happen. Ira Burnim, one of the lawyers who helped manage the 1999 Supreme Court case, discussed the coalition of support to get it there, the decades of advocacy that laid the groundwork, and the 1990 Americans with Disabilities Act (ADA) that gave the fight new life.

Olmstead v. L.C. was a case brought forward by two women—Lois Curtis and Elaine Wilson—who were voluntarily admitted to a state-run psychiatric unit in Georgia. After their medical treatment concluded, they were determined to be ready to move into a community-based program and come back to their homes. However, the women remained confined in the institution for several years.

With the help of the Atlanta Legal Aid Society, Lois and Elaine ultimately brought suit under the Americans with Disabilities Act against Tommy Olmstead—the commissioner of the Georgia Department of Human Resources. The plaintiffs were asking to be released from an institutional form of care and begin receiving community-based treatment.

In our conversation with Ira Burnim, he detailed how the 1990 passage of the ADA sparked hope in those who had been fighting for community-based services. Ira shared that the question at the time of bringing the lawsuit was simple: Would the ADA also include this right to community care, as opposed to institutional care?

“The ADA had a second really important principle, not just don’t discriminate,” Ira explained, “but change the world, so that people with disabilities have an equal opportunity to benefit [and] receive services to participate in the community.”

The push for de-institutionalization has a long history, and—like the entirety of the disability rights movement—would not have happened without the advocacy of people with disabilities and those who listened and came alongside them. Lois Curtis was one of those powerful voices.

During a series of interviews with Lois in 2014, fifteen years after Olmstead v. L.C., Lois was asked what she hopes for people who she has helped move out of institutions and into the community. Here’s part of her response:

“I hope they live long lives and have their own place. I hope they make money. I hope they learn every day. I hope they meet new people, celebrate their birthdays, write letters, clean up, go to friends’ houses and drink coffee. I hope they have a good breakfast every day, call people on the phone, feel safe.” – Lois Curtis

The first time I read this quote from Lois it gave me goosebumps. All of these are things that most people in society take for granted every day, like I did this morning when I drank my coffee in my own home and worked a job for a fair wage. Or like I did as a 4-year-old kid in June 1999 when I was included in my community and accepted on a sports team that helped me learn, grow and make friends. And yet, my goosebumps pricked up when I read Lois’ words because I knew that access to these very basic joys is still not a guaranteed or inevitable reality for people with disabilities.

ANCOR member organizations across the country work to make Lois’ hope a reality for millions of people every day. But we are also facing extreme threats to this hope. Chronic underfunding in home and community-based services has created workforce shortages at crisis levels, which has decreased access to the services people need to fulfill Lois’ dream of them living long lives, having their own place, making money, and learning every day.

It took decades to get us to Olmstead. Now, two and a half decades after the crucial decision, I wonder what it’s going to take to make Lois’ dream the baseline reality for every person with a disability who has been forced to wonder if they’re truly worthy of belonging and respect. Plainly, and boldly, it’s going to take everyone realizing that the ADA isn’t just about not discriminating against people with disabilities, but changing the world in whatever way we can to build a better world for people with disabilities.

Alli Strong-Martin is the Communications Coordinator at ANCOR.