With disability rights under attack, history offers hope and a possible playbook

When Ari Ne’eman heard Robert F. Kennedy Jr. call autism an “epidemic” that “destroys families,” Ne’eman felt like he had stepped into a time machine — heading in the wrong direction.

It was during an April 16 press conference where Kennedy, the nation’s top health official, went on to claim that autistic children will “never pay taxes” or “hold a job” and that their condition is preventable.

“This is a throwback to how people talked about autism 25 years ago,” Ne’eman said.

Ne’eman knows this history well, having studied it as a Harvard health policy researcher, lived it as an autistic person and shaped it as the co-founder of the Autistic Self Advocacy Network.

“This is a very dark time. Disabled people are under unique threat,” Ne’eman told Tradeoffs when we sat down recently for an interview about the sharp policy shifts in Washington. “But I still have hope.”

He said he derives much of that hope from the successful history of the disability rights movement, the subject of his upcoming book.

“The Americans with Disabilities Act and a whole host of other priorities only exist because people with developmental disabilities, people with physical disabilities, blind people, deaf people, people with mental illness and many other categories decided, we have to all hang together or we’ll surely hang separately,” Ne’eman said. “The word disability is as much a coalition as the term people of color or LGBTQ.”

Below are highlights from our wide-ranging conversation, which has been edited for length and clarity.

DAN GORENSTEIN: In this moment of great uncertainty about how our health care system is changing, why are the stakes especially high for people with disabilities? 

ARI NE’EMAN: So disabled Americans really have a uniquely challenging position, in that they are very frequently devalued and dehumanized by the health care system. But, at the same time, they have a tremendous need for health care. Some of it is the same kind of medical care that people are very familiar with — things like prescription drugs or doctors visits. But there are also, I would say, unique needs — the person who helps you use the bathroom, the person who helps you find and keep a job. These are often very intimate and very personal kinds of support without which people would not be able to live.

Ultimately, for many people with disabilities to survive and thrive on their own terms, there is a need for some very costly, ongoing assistance. For people with developmental disabilities — things like Down syndrome, autism, cerebral palsy — it’s common for home- and community-based services to cost $40,000 or $50,000 a year.

So having a service system that is adequately financed and responsive to people’s desires about how they want to live is absolutely crucial.

GORENSTEIN: That ‘service system’ as you call it, Ari, is taking some real hits in Washington right now. 

The Trump administration has moved, for example, to dismantle a federal agency dedicated to helping older and disabled Americans live independently. 

Congressional Republicans are also contemplating deep cuts to Medicaid, the public health insurance program that covers some 15 million Americans with disabilities. 

Has the disability community faced potential cuts this sweeping before?

NE’EMAN: The most notable comparison comes in the early 1980s when the Reagan administration first came in. The disability community had just won major civil rights victories — the federal law that guarantees children with disabilities the right to attend public school, and provide supports and services, as well as the first nationwide civil rights law that protects disabled people against discrimination. Unfortunately, the Reagan administration moved quickly to try and roll back both of those key protections.

GORENSTEIN: Disability right advocates ended up winning that fight, and a key reason was this sort of ingenious two-pronged strategy, right?

NE’EMAN: That’s exactly right. The first part of that strategy was massive mobilization. You had key advocates across the country mobilizing tens of thousands of people to write letters, show up at hearings, engage in aggressive activism. There were points in time where you couldn’t walk down the hallway of the Department of Education without having to step over mail bags full of the tens of thousands of letters that had come from disabled people and parents across the country.

At the same time you also had this really interesting insider strategy, in which a number of advocates sought to reframe long-standing disability rights priorities in terms [that appealed to people] across the political spectrum. So, for example, you saw an ongoing effort to activate many socially conservative parents who saw support for keeping disabled children in their family homes as a reflection of family values. There’s this fantastic quote I came across in my book research talking to someone who was very active on the Hill in the 1980s, where he said, “When I saw the Republican women in their Halston suits show up to lobby against the rollback of special education rights, I knew this was over.”

GORENSTEIN: Do you think a similar playbook can work this time around? Are you seeing advocates use it?

NE’EMAN: To some extent, you are seeing this right now. Disability has been foregrounded in both the defense of Medicaid and in the efforts to push back on the elimination of the Department of Education. And the reason for that is kind of a dark reality: There are many people in this country who, when you say, “This will hurt racial and ethnic minorities or the LGBTQ community,” their reaction is, frighteningly, “Good. That’s what I intended to do.” But many of those people can still be influenced [if you say], “This will hurt disabled people.” That’s an unfortunate reality, but it’s a reality that exists right now in American politics, because disabled people are a constituency that still has crossover appeal.

GORENSTEIN: So, Ari, we’ve talked about what advocates did in the 1980s and what they are doing today to push back on potential budget cuts. 

But I’m wondering how you as a researcher plan to track these cuts. What’s the evidence that you’re going to be watching for, to see the effects of these policy choices on human beings?

NE’EMAN: First and foremost, I’m going to be looking at [the effects of] rollbacks in the supports that help disabled people and older adults remain in their homes and communities instead of having to go into a nursing home or other institution. And if we do see a major pullback in federal Medicaid funding, it’s quite likely these services are going to be first on the chopping block.

There are three things that I’m worried are going to happen as a result. Number one: Disabled people are going to end up forced into nursing homes and institutions. Number two: Family members, in particular women, are going to be more likely to fall out of the labor force in order to provide uncompensated care. And then number three, I think we are likely to see a lot more unmet health care needs.

GORENSTEIN: I’ve got to ask you about Secretary Kennedy’s recent announcement that called autism “preventable.”

He also promised to investigate the “environmental toxins” that he believes are responsible for the rise in autism rates.

You are autistic, and you’re a researcher. What did you make of that announcement?

NE’EMAN: I have to be honest, I think my first thought was, “Oh God, not this again.” Secretary Kennedy’s approach is particularly ill-advised, but in some respects it’s an extension of a long standing problem.

Over the course of many administrations, we’ve seen autism research focus disproportionately on questions of biology. So, for example, in 2020 this country spent $418 million on autism research. Only about 8.5% of that was spent on research on how to improve the quality of the services and supports autistic people receive.

And I think it’s unfortunate — not because there isn’t the role for research on the causation of autism, but because there’s an imbalance. When the average autistic person or family member of an autistic person wakes up in the morning, they don’t ask themselves, “Have they found a new biomarker yet?” They ask, “Are there better strategies available to help me or my loved one live independently, to be included in the workplace, to be in the general education classroom?” And we really owe it to people to have a research agenda that is in some way responsive to that.

Dan Gorenstein is executive editor and Leslie Walker is a senior reporter for Tradeoffs, a nonprofit news organization that reports on health care’s toughest choices. You can also sign up for Tradeoffs’ weekly newsletter to get the latest stories in your inbox each Thursday morning. To hear more from Ari Ne’eman, listen to the full Tradeoffs podcast episode below.