Before the Declaration of Independence was even signed, the fledgling United States of America already had mental institutions, taking people considered “insane” out of their homes and tucking them into specialized hospitals. Sometimes they got treatment; sometimes they were shackled, starved, and abused.
People with psychiatric disabilities were jailed more often than they were placed in hospitals in the early days. In the 1830s, a Boston schoolteacher named Dorothea Dix took a job teaching people in prison in Massachusetts. While she didn’t go into the job as an activist, what she saw in the prison appalled her. She started to report on the brutal living conditions and how the people in prison, many with psychiatric disabilities, were abused and starved by their jailers. She started a movement that expanded the reach of our psychiatric hospitals, but it was no miracle fix. While a lot has changed in the last 180 years, patterns of abuse in long-term care facilities and jails repeat endlessly to this day.
Right now in the United States, there are more people with psychiatric disabilities in jail or prison than there are in psych hospitals, and incarcerated populations represent people with a huge array of physical, cognitive, and sensory impairments. If she were around today, Dorothea Dix would be outraged at how it’s once again easier to wind up behind bars than in a specialized hospital.
Prison activist Dorthea Dix
Our current incarceration rates have something to do with our response to the abusive institutions. In 1963, President John F. Kennedy signed the Community Mental Health Act, a law intended to end the isolation and segregation of disabled people in archaic institutions by pushing funding out of institutions and into home- and community-based care. But even as the nation shut down institutions, funding for community care has still not reached levels needed to keep most people with complex care needs in their homes. We shuttered the warehouses and gave people nowhere to go, and pretty much the only resource we gave them was stronger and stronger psychiatric drugs to alter their behaviors and their realities, doing nothing to change society’s response to illness and disability.
As a culture, we never addressed the ableist biases that led us to want to lock up disabled people in the first place. The politics of who gets assigned the label of “disability” ties in to racism, homophobia, and sexism. Until the 1970s, homosexuality was considered a mental illness, and for many years, a crime. Many LGBT people were incarcerated in prisons and psych wards. Likewise, 19th century doctors had great confidence that the only reason an enslaved African or African-American might run away was because they were suffering from an alleged mental illness that they called “drapetomania.” And we all know the fabulous diagnosis of hysteria, something that can only happen to someone with a uterus. In early-20th-century thinking, someone’s uterus supposedly detached from its spot in the abdomen, navigated itself to the brain, and destroyed the person’s ability to think rationally.
Today, these biases still all work tragically in tandem. The practice of forced sterilization, once thought to be over, continues into the 21st century for incarcerated women with disabilities who are poor, mostly women of color. And just look at the reality of police violence: In recent years, we’re finally getting national media coverage on how Black and Latinx people are far more likely to be killed by police than white people. What’s hardly ever reported is police brutality against people with disabilities, even though estimates now find that between one-half and one-third of people killed by police have a disability.
For me, these aren’t just distant statistics. They’re a constant danger in my own community of people with disabilities from traumatic brain injuries (TBI). I’ve seen friends with traumatic brain injuries be incarcerated instead of getting rehab when they’ve spiraled into houselessness, driving under the influence, attempting suicide, and abusing drugs, all common for many people with TBI. Disability and deafness are often criminalized when people don’t walk, talk, or respond to police in the way the officers expect them to. Some say police need more training in disability awareness and how not to escalate situations in which someone needs more time or needs to communicate in a way that’s unfamiliar to cops. I think the issue will still be here, regardless of training, as long as society continues to view disabled and deaf people as unfortunate victims of circumstance, in need of cures, and as people without our own beautiful, perfectly workable ways of moving, thinking, and communicating.
When I think specifically about why people who acquire their disabilities as adults like I did are more likely to wind up in jail than nondisabled people, I think back to the time I got kicked off an airplane in 2013.
This was back when I used to get completely devastated when anyone changed my plans, something the brain injury really brought out in me. I’d requested preboarding and then to have someone hoist my bag into the overhead bin for me, both of which are my rights under the law. They refused. And I imploded. I didn’t want to cause a fuss, so I withdrew into a little ball. As my rage and frustration built, I crushed my glasses in my fist, obliterating them, and I refused to speak for fear that I’d only be able to scream. I was trying to make myself silent and invisible. But that was too much for the flight crew. They demanded I leave the plane, saying I was “a safety hazard” and that the pilot refused to fly with someone who refused to communicate.
When I made it back to the waiting area, I was in a sobbing rage. I threw my bags down and started cussing at the top of my lungs.
Luckily, in cases of disability-related incidents, airlines are required by law to call in a specially trained complaints resolution official, whose job is to observe and assess if a violation has occurred and to write up a report. Since I had been screaming that no one would give me my accommodations, they figured out quickly that he was the one to call. Even though his job wasn’t supposed to be more than gathering the facts, he took on the role of mediator and got me to tell my side of the story in a non-yelling voice. He also told me to quit throwing my luggage, which I obeyed, seeing as he was nearly seven feet tall. And then he reassured me I could still go home, which—despite how strange it might sound to some—was the most pressing issue on my mind then; I was certain that being removed from a plane once meant never being allowed back on again, because that’s how my brain worked back then.
The glasses I’d crushed had prism lenses to point my eyes in the same direction. Without them, the people, carts, and rolling bags were visually disorienting, and I kept getting lost trying to walk in a straight line. So the official held my hand as we walked to keep me from running into anyone. He got me a new ticket on the next flight. Then he led me to the employee lounge and let me wait there. When I got on my flight five hours later, I was too exhausted to care about my own frustrations. That made it easier to stay calm and follow orders and sit still.
Thinking back to this incident, I know even though it wasn’t a good situation, it could have turned out so much worse. Airports aren’t exempt from police and TSA brutality. What kept it from escalating to that? I honestly believe it had a lot to do with the fact that I’m a small, cisgender, white woman. It’s my privilege that kept me from being incarcerated.
A lot of disabled people don’t wind up being as lucky as I was that day. People who are incarcerated are three to four times more likely to report having disabilities than nonincarcerated people, regardless of whether the disabilities or deafness were acquired or present for their whole lives. And the prison system fails them in all sorts of ways by routinely denying them their specific—not special—needs. Storytellers from the AVID Prison Project report barriers they face that are pretty universal, such as having their wheelchairs taken away, being refused medical attention or prescriptions, and being punished and isolated instead of given accommodations, many of which are inexpensive and straightforward.
Last year, I listened to activists and artists on a panel about race, disability, art, and incarceration held in Seattle. Dorian Taylor talked about their experiences being abused as a child and how their responses to abuse were seen as just “acting out.”
As a Black, Native American child, labeled as mentally ill instead of as a victim of abuse, they got no counseling or care. Instead, they got incarceration in a mental institution and chemical incarceration through psychiatric drugs, leading to a cycle of isolation and further abuse. Please be advised if you check out the rest of the audio: The content of the panel may be triggering as they discuss racism, trauma, family abuse, police brutality, prison, and profiling.
Only in 2016 is the Justice Department finally acknowledging the pattern of disability discrimination in police encounters as they investigate excessive force and racial profiling. In many cell phone videos online showing police brutality, you see people being pushed or dropped onto their heads, and I wonder how many now have brain injuries too.
I used to go to a brain injury support group. Not long after my airport incident, a police chief came to our meeting to talk about police encounters. She told us we should wear medical alert bracelets listing our disabilities so officers would ideally view us as disabled, not noncompliant. I ordered one online that same day. I was scared I might lash out in public again. I was afraid of a cop touching me. I was afraid of a cop punishing me for imploding and not responding, even though for me, it would be self-preservation. The bracelet said to speak slowly, quietly, and calmly. It said to write things down. I can’t remember what else it said because I lost it.
As many disability rights and justice activists state, this is not a matter of individual people’s personal shortcomings, flaws, or failures. Disability and deafness are not “what’s wrong with you.” Being disabled or deaf means existing in and creatively adapting to an inaccessible world while honoring and celebrating all aspects of your identity. Nowadays, I have much more self-control, and I can communicate better under stress. With these added privileges, I don’t have fear around my own situation anymore because I pass as nondisabled.
Thanks are due to disability justice activists, like those using the the hashtag #dangerouslydisabled on Twitter to share firsthand experiences around policing and incarcerating disabled and deaf people. As we share many, many people’s stories, we can go beyond one person’s medical alert bracelet and see the patterns around disability and incarceration.
Usually in our media and pop culture, disability is considered a downer of a subject. Disability stories are considered niche. But they’re not niche. Disabled people exist in every culture and community in the United States. The imperative that we are to be hidden away in locked buildings is based on cultural values, not a universal inevitability. It’s up to us to keep up the fight for basic rights, such as living in the community. And we can’t stop there because disability rights are only part of one step in the direction of disability justice.