The ADA Generation Speaks: Demanding Better Access to Mental Health
by Beth
I am pleased to introduce Kit Aronoff as a guest blogger today. Kit is an Assistive Technology Coordinator at Temple University. She has a passion for inclusive technology, she advocates for disability rights issues centering on education, and she works part-time as a freelance tech journalist under the name Kit Englard — follow her on twitter @mathnskating.
by Kit Aronoff
When people ask me, “How old is the ADA?” It’s easy for me to come up with a number. The ADA and I are the exact same age. I’ve nicknamed anyone born in the 90’s as “ADA babies,” because we’ve had the unique privilege of never living in a world where we weren’t protected by this groundbreaking civil rights law.
The ADA has fundamentally changed the way disabled people are able to navigate society. Ask anyone you know who is older and his been disabled for a long time, they will tell you about the “pre-ADA days” when accessible transportation, employment, housing, education and social life was difficult — or impossible — to find. We ADA Babies have no idea, they’ll say.
In many ways, they’re right: when I went to college I was supported by a staff at the disability office, an office that hadn’t existed before the 1990s. The ADA changed the world, laying the groundwork and foundation which future generations can continue to build upon and one day, hopefully, achieve equality for people with disabilities. This aspect is often misunderstood. Like many civil rights issues, the common belief is that “Well, we passed the law. Nothing more to be done here.” Which is misguided.
The ADA starts to get murky when you introduce the idea of intersectionality. That intersection can be with race, ethnicity, religion, sexual orientation, and so on. But it can also be with other disability types. People who are blind and are a wheelchair user, or someone with chronic health conditions who is also deaf. A common, and often overlooked, aspect of this crossroads is mental health. Specifically, access to mental health services as a person with a physical disability. I can tell you firsthand: it isn’t easy.
It’s difficult to explain the complex systemic problems that can prevent access to mental health. Some of these include transportation, lack of medical insurance, and lack of providers with knowledge of issues that directly relate to disabilities.
As a DeafBlind woman who has a diagnosis of complex post traumatic stress disorder, I struggle with an eating disorder as well as an anxiety disorder. Finding a therapist that is confident in working with eating disorders and trauma can be challenging enough. Adding my DeafBlindness to the mix makes it nearly impossible. And try finding full access to materials used for in-patient or other structured treatment programs! That’s the area that’s been by far the hardest for me to navigate: in-patient or other structured treatment programs are very reluctant to provide full access to the materials used in groups and classes in an accessible format.
The reason I was given at one point when I was denied a request for accommodation was “intellectual property.” They claimed that by their producing it electronically or in braille for me would make it possible for me to steal their program. The second place cited that they didn’t really understand why I needed it. The worst was my most recent experience. I requested interpreters as well as braille, and I was denied on the basis of a HIPPA violation — which was a wildly incorrect assertion.
When something is inaccessible, we’re advised to “Self advocate!” I’ve spent my whole life — that’s 30 years now, remember — advocating for access to everything from the grocery store to my local synagogue. The long term toll of constantly self-advocating is burnout. Each time I’m denied feels like a little chip of my self-worth is falling away.
But what happens when you can’t self advocate? What if you’re in the ER for a psychiatric hospital, and you simply don’t have the mental or emotional energy to spare on self advocating? The truth is, people give up. They stop asking for help. Worse, they can start believing that they aren’t worth helping.
The first time my husband witnessed a horrible denial of accommodations, I started sobbing uncontrollably when we got home. He was shocked at my strong reaction. I had to walk myself back to a place of feeling worthy of friendship and care.
But to do that I, and anyone, needs to be in a good head space. When one is deep into a mental health condition that isn’t something they can rely on. A denial of accommodations is a huge neon billboard saying, “You’re not welcome here!” I struggle with self worth. I take rejection of accommodations hard. This isn’t a hypothetical, this can literally be life or death.
Society is judged by how we treat our most vulnerable. In the United States we deeply undervalue the worth of mental health professionals, and also the lives of people with disabilities. It is here where we must speak up for those who cannot do so themselves, and demand that accommodation requests be met in treatment centers and clinicians’ offices.
Everyone deserves equal access to mental health treatment, regardless of disability. It is my sincerest hope that this is an area where, 30 years from now, we can look back and say, “See? We did it.”
August 17th, 2020 at 10:23 am
Hi Kit
I’m so sorry! That this is still happening to you or anyone else with disabilities! My daughter has had many of this same challenges. Because of her disabilities, because that doesn’t defined who you are or who she is. But I just wanted to thank you for speaking out, and being truthful about what your going thru. Also about your life Tracy Hatfield
August 15th, 2020 at 12:26 pm
Well read and well said