Q&A: Ben Mattlin on the Continuing Struggle for Disability Rights

1.    Congratulations on writing a fascinating, eye-opening book. Can you say a bit about why you decided to write it?

After passage of the ADA in 1990, my wife and I had kids and got busy with the rest of our lives. I lost touch with the disability community and the activist movement. I’d even gotten to the point where I suspected that the younger generation didn’t care anymore about disability rights; they were resting on their laurels, or I should say on the laurels that my generation and the one before me had put in place. I was wrong. Very wrong. They are excitingly active!

But it was really when I began seeing astonishing examples of disability representation that I realized something had changed. This was about five years ago. High fashion models with highly visible disabilities, comedians and actors with highly visible disabilities, even a Tony winner with a highly visible disability! And among more ordinary folks, young disabled people were posting selfies brazenly and proudly displaying their wheelchairs, crutches, prosthetic limbs, colostomy pouches, etc.

How had they gained such self-confidence? How had the media gatekeepers become open to this degree of disability visibility? I had to connect the dots. I had to investigate.

 2.    You frame the book as being about a “post-ADA” world. Why do you see the passage of the Americans with Disabilities Act as such a pivotal moment?

It was quite simply a civil rights landmark for disabled folks. But beyond establishing and codifying basic legal protections to end or at least limit disability discrimination, it gave disabled people a sense of belonging, even entitlement. People became freer to identify as disabled, too. And for those who came of age at the right time, the ADA enabled them to imagine a better life, to plan for their futures. You see, earlier legislation (the Education for All Handicapped Children Act of 1975, later renewed as the Individuals with Disabilities Education Act) had brought more disabled kids into the educational system. But there was nothing in place to support them after they graduated from high school. The ADA gave them a framework for the rest of their lives, the possibility for advancement and a fully integrated adulthood. Or at least in theory.

3.    Your book presents the legal revolution around disability as a “glass half full” situation. What are some of the main areas in which you think society has failed to deliver for people with disabilities?

Where do I begin? First of all, as comprehensive as the ADA is, it has holes. You can’t get a ticket for an access violation; rather, someone has to be so inconvenienced or injured that they take you to court. That puts the burden on disabled people, the injured parties. Second, the ADA doesn’t cover airlines or insurance carriers or businesses that operate on indigenous reservations. Consequently, air travel is all but impossible for many of us. Employment remains a serious problem, too, though the reasons are not entirely clear. Perhaps most of all, there’s only so much any piece of legislation can accomplish. Simply put, you can’t make people not be bigoted.

The limitations of legislative reach go beyond bad attitudes. There are studies that show that perhaps as much as half of the victims of police violence are disabled people; they could not hear or otherwise process commands to freeze, for instance. They were seen as threats through no fault of their own. Moreover, disabled people of color and queer and gender nonconforming or non-binary disabled folks face double- or even triple-whammies of oppression. Many of these folks with intersectional identities are discriminated against within the disability community, by other disabled folks.

Finally, some say that the very capitalist system itself is “ableist,” meaning it favors nondisabled people at the expense of disabled people. We should not have to achieve certain accomplishments, meet particular benchmarks, earn a living or otherwise prove ourselves worthy of taking part in society, to gain respect and fair treatment. Many disabled people just can’t compete safely in the rat race. They nonetheless deserve access to the full measure of society simply by virtue of being human beings.

Okay, that’s the end of my preaching.

4.    We were in college together in the 1980s. I was very aware at the time, mainly through being friends with another student with a disability, that Harvard was not doing a great job of meeting the needs of students with mobility and other issues. Do you have any sense of whether Harvard, and other colleges, have improved much since those days?

I sure hope so. I suspect it’s a mixed bag. Many campuses are old, and not all buildings can be made accessible. But more than architectural barriers are at issue. The level of assistance that many disabled folks—including myself—need is rarely if ever provided in the higher education setting, as it is in primary and secondary education.

5.    Your book is anything but a dry legal tome, and it is really enlivened by some of the individuals you spotlight. I was particularly taken by your story of the actress who played Ado Annie in Oklahoma on Broadway, since I was lucky enough to see her remarkable performance. Were there any people whose story, or whose contribution to the movement, especially impressed or moved you?

Many, and I would hate to single anyone out. I’m certainly stirred by the life of the late Lois Curtis, the neurodivergent disabled woman of color who was largely responsible for what became known as the Olmstead Decision—the Supreme Court ruling and subsequent law that basically said that cognitive and emotional impairments count as ADA-protected forms of disability, and institutionalizing disabled people who did not need or want to be institutionalized is a violation of their rights under the ADA. The fact that it’s known as “Olmstead” is an example of how women in general and disabled women of color in particular have been largely erased from the mainstream narratives of disability history. Throughout my book, I refer to it as “Olmstead-Curtis.”

I also very much enjoyed writing the chapter about disabled comedians, for obvious reasons.

6.    We live in a time when so many things in the political realm seem to be getting worse, from the environment to democracy around the world. Are you optimistic or pessimistic about where disability rights are headed next?

I’m always optimistic, somehow or other. Perhaps I’m foolish. The evidence for having hope is pretty slim. Disability rights themselves are always under attack—usually from right-wing business interests. And as the disability activist Judy Heumann told me, you can have rights and still not have justice. Many younger disabled folks, particularly nonwhite, non-cisgender disabled folks, are today advocating for a Disability Justice agenda that goes beyond what laws can deliver. Can they change society to make it safer to be disabled? Maybe a little. But they can certainly raise awareness, raise consciousness about how things ought to be different. And that is a necessary if not a sufficient step toward making a better world.