Viewpoint: The Olmstead Decision Celebrates 25th Anniversary

D'Arcy Robb, GCDD Executive Director

 What were you doing in 1999? I graduated from high school. Interestingly, Georgia self-advocates Lois Curtis and Elaine Wilson were making history. 

You may or may not know their stories. Lois and Elaine both had disabilities. They spent years cycling in and out of Georgia’s state hospitals and institutions. Clinical care teams working for the state of Georgia agreed that Lois and Elaine should be served in the community rather than in institutions. However, supports were unavailable in the community then, and Lois and Elaine remained in state hospitals. Hoping for a better life for themselves, the two women connected with attorney Sue Jamieson of Atlanta Legal Aid. 

Sue filed a case on behalf of Lois and Elaine and argued that it was discrimination to unjustifiably isolate people in institutions when they could live in the community. The courts of the American legal system agreed with her. 

In April 1999, Olmstead v. LC was argued in front of the United States Supreme Court, and in June of that year, the Supreme Court announced its watershed decision. In Olmstead, the Court found that individuals have the right to live in the community rather than in institutions if, in the words of the Court opinion, "the State's treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities."

And with that, two self-advocates from Georgia launched a new era for people with disabilities in this country. 

I am in awe of what it took for Lois and Elaine to challenge the system. Imagine cycling in and out of hospitals, being stuck in an institution for years, and told you should be out in the community, but there’s nothing there for you. Can you imagine having the spirit and the downright audacity to beat all that?  

That spirit is alive and persevering in our community today because of a determined community continuously fighting for their voices to be heard. This June, I had the honor of attending the Olmstead 25th anniversary celebration at the White House and heard from a powerful roster of disability self-advocates. You can see the live stream here: https://www.youtube.com/live/EYsDx5ogzLc

At the event, panelists, whose experiences were not necessarily the same as Lois’ and Elaine’s, each shared their own experiences and challenges as individuals living with a disability, including experiencing discrimination and living with the stigma of low expectations. 

Emmanuel Jenkins of the Delaware Developmental Disability Council talked about a list one of his teachers gave his mother when he was in 8th grade. “The list of what I could not do was long, and the list of expectations was short.” Thankfully, he did not limit his life or disabilities to the list of “could not dos.” He has accomplished many things, including many things on that list.

I know many people with disabilities or their family members who have been given such a list—a no list. Another self-advocate, Kevin Nunez, who spoke at the 25th Olmstead Anniversary celebration, shared that he, too, was given a list of what he could not do because of his disability, but he was determined to live his life freely and defy the odds. Kevin’s advice: “Never give up and don’t listen to the no’s.” 

Don’t listen to the no’s. If Lois and Elaine had listened, the Olmstead decision would not exist today. 

As a parent, advocate, and executive director of the National Association of Council on Developmental Disabilities, Jill Jacobs reminded us to find our people. 

Find people who understand your situation and see the value in ‘yes’ instead of ‘no’. And for parents of kids with disabilities, be sure those people include adults with disabilities. Adults with disabilities who have no fear of challenging the ‘no’ in pursuing their dreams are valuable to this community and significant in demonstrating this community’s advocacy. 

In this way, the traditions and spirit of Lois Curtis and Elaine Wilson continue to live on.