I still remember the morning a nurse I had never met pulled back the curtain around my bed at Shriners Hospital in Philadelphia, flipped on the overhead lights, and told me it was time to get up—even though I had barely slept after surgery the night before. I was thirteen years old, groggy, in pain, and suddenly aware that my day would unfold entirely on someone else’s schedule. I spent six months of my life there, undergoing multiple orthopedic surgeries, and that experience shaped my views on disability, independence, and institutionalization for the rest of my life.
Let me be clear: there is nothing redeemable about institutionalization as a way of life. Even when an institution provides excellent medical care—as Shriners did for me—it still strips away something fundamental: control over your own life.
That is why the recent Department of Justice memorandum questioning long-standing interpretations of the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and the Supreme Court’s Olmstead decision chilled my blood.
As someone who has lived, however briefly, in an institution, let me explain what institutionalization actually means. Someone else decides when you wake up. Someone else decides when you eat, where you go, when you bathe, who comes to see you, and when the lights go out. Every hour of every day is controlled by someone else.
Under what circumstances would that be anyone’s first choice?
The DOJ memorandum buries the reader under pages of constitutional arguments, legal citations, and theories of federalism. Yet one of its central assertions is almost beside the point: if a person qualifies for services, those services can be provided in any setting.
Technically, that statement may be true.
But it completely ignores the question that Olmstead answered nearly three decades ago: Who gets to decide where a person lives?
Receiving services is not the same as living a life. A person may receive competent care in an institution while simultaneously losing the freedom to make ordinary decisions that every American values. The issue has never been whether services can be delivered inside four walls. The issue is whether unnecessary segregation denies people with disabilities the opportunity to participate in community life as equal citizens.
That was the genius of Olmstead. It recognized that unnecessary institutionalization is discrimination.
Over the years, I have met many parents and siblings who tell me they simply want a “safe place” for their loved one with a disability. I understand that concern. Families grow older. They become exhausted. They worry constantly about what will happen after they are gone.
Their answer, however, is not a return to institutions.
Their answer is more safe places in our communities.
Create enough affordable housing. Expand community supports. Strengthen direct-care services. Give families confidence that their loved ones will be safe, supported, and connected to the broader community. If we do that, very few people will choose institutionalization.
I also find it ironic that the Department of Justice invokes the Constitution when it serves its purposes while appearing willing to discount decades of disability rights law and Supreme Court precedent when it does not.
Of course states would like more federal resources to provide quality community services. They have been saying so for years.
But do most states really want to reopen large institutions?
I doubt it.
Federalism arguments only take you so far when they ignore incentives, practical realities, and the clear direction disability policy has followed for the past fifty years.
What I find equally fascinating is the Administration’s choice of priorities.
Americans consistently say their greatest concerns are the cost of living, housing, healthcare, and economic security. Yet the Department of Justice has devoted enormous resources to challenging legal principles that protect the right of people with disabilities to live in the community rather than institutions.
Who exactly is asking for this fight?
Does anyone honestly believe that weakening the ADA, Section 504, or the Olmstead decision will lower grocery prices, reduce housing costs, or make healthcare more affordable?
Politically, this makes little sense.
There are an estimated 60 million Americans living with disabilities. But the constituency affected is much larger than that. They have mothers and fathers, husbands and wives, brothers and sisters, children and grandchildren. They have neighbors, coworkers, employers, friends, healthcare professionals, educators, and advocates who understand that disability eventually touches nearly every American family.
These families are Democrats, Republicans, and Independents alike.
There are just as many people with disabilities in Republican families as there are in Democratic families.
If Republicans hope to broaden their coalition, this is an odd way to do it. Instead of expanding support, they risk alienating millions of voters whose lives have been improved by disability rights laws that enjoy broad bipartisan support.
Every day this controversy continues creates one more reason for voters to reconsider where they place their trust.
Another stupid move.
Perhaps the day after the November election, some in Washington will finally develop the insight that disability rights are not a partisan issue. They are about dignity, freedom, family, and the simple belief that every American deserves the opportunity to live where they choose, surrounded by the people and community they call home.
Thank you.
Common Grounder
Patricia Morrissey
