The ADA at 32

Posted on by Jen

The Americans with Disabilities Act (ADA) was created in to prohibit discrimination against disabled people. At least the ADA was intended to prohibit discrimination – many places are still inaccessible and discrimination still exists 32 years later. Many businesses have spent the last 32 years, and money, arguing why they shouldn’t be forced to change their buildings rather than changing them. Employers still use “not a good fit” to cover a multitude of sins. Even when employment is granted accommodations are routinely denied for a number of reasons or the person ends up fired. The general public doesn’t seem aware of the issues – instead arguing “it’s illegal!” Or “Call the ADA” without realizing the burden is on the disabled person to sue the employer or business that is violating the law.

Here’s an article that details a few examples: Advocating for ‘tough issues’: ADA enforcement often falls to people with disabilities

During the pandemic many of the accommodations that disabled people had been asking for years were granted only because everyone needed them. Some examples include being able to work from home, virtual doctor visits and other events that became virtual. As soon as everything started opening up again those accommodations were taken away. People were encouraged to return to the office, and many of the virtual options were discontinued as soon as in person events could happen again. But the fact that the accommodations were granted only shows that it is possible to have that kind of access.

The ADA has always been under threat – many lawsuits have gone through the courts, some that could have led to the ADA being gutted because certain groups felt that the ADA required too much from business and employers. Because of recent actions by the Supreme Court disability rights lawyers are increasingly hesitant to file lawsuits because they fear it will give the court a reason to gut the ADA. Read the article at MSNBC.com – “How this Supreme Court is setting back disability rights — without even trying” by Eric Garcia, MSNBC Opinion Columnist

Back in July 2020, Cal Montgomery, wrote a blog post “I Will Celebrate ADA30” in which he noted additions problems with the ADA:

“But the ADA represents a hollow promise. It was never meant for all of us. It was always intended to protect some disabled more than others, and still other disabled not at all. And the independent living movement, which plays an enormous role in cross-disability agenda setting, has focused on the kind of “one and done” accessibility that is coded into the ADA Accessibility Guidelines (ADAAG) (and even then only some people’s “one and done” needs are addressed) rather than the ongoing work of negotiating the fluctuating and complex access needs of individuals, groups, and communities.”

The ADA may have done a lot to improve the lives of disabled people in the 90s but it never went far enough and these days it seems like it could be gutted at any time because certain groups don’t believe others should have access to anything.

Be sure to also read: A Letter to the Americans with Disabilities Act on Its 32nd Birthday by Sandy Ho posted earlier this week.

The moment that photo captured, your passage, was just the beginning. As we both know by now, the first step in every struggle for civil rights is necessary but hardly enough.

Disability in Science Fiction

Posted on by Jen

I wanted to include Science Fiction as a subject for this blog because it is my favorite genre and has been since I was very young. It’s also always been something I’ve wanted to see more and better disability representation in. Everyone wants to see themselves in media portrayals, including disabled people. Unfortunately the quality of disability portrayals is often lacking, Science Fiction for example, favors the idea of curing everything. It’s not that cures are always bad but often it ends up seeming like it’s more about convenience more than need. Take Geordi La Forge on Star Trek The Next Generation for example. He was Blind and used a VISOR to see. In one episode he visits Doctor Pulaski to find out there was a way to update his VISOR because it was causing headaches. It starts off reasonable – he’s having pain so he should see if there’s a solution. But Doctor Pulaski seemed to just jump to the idea of giving him “real” eyes instead of fixing the VISOR. There’s some additional details and it could have been something Gordie was interested in but it ended up feeling like she cared more about giving him “real” eyes instead of improving his quality of life. There’s a difference between someone choosing something for themselves and having it encouraged by a doctor for convenience. There’s many other examples if disability in Star Trek that are just as frustrating. Its annoying have my favorite TV show franchise do things so badly when it comes to disability. Even when the get some things right they ultimately fail at it.

But I don’t want to spend this entire post talking about Star Trek and it’s issues. I’d rather talk about some books I’ve read that had good portrayals of disability, written by disabled people. Here’s the thing about disabled people – we figure a lot of things out on our own because often no one will do it for us, or only focuses on what they think is important. So of course we’ll write our own stories and when we write our own stories they’re not all doom and gloom or about pity. They can be angry and scared and painful but there’s also hope and fighting for what we need. And survival, because that’s what we’ve always done.

Fiction

“On the Edge of Gone” by Corinne Duyvis – an apocalyptic science fiction story with an autistic main character (written by an author who is also autistic), set in 2035 and it begins with a comet about to hit Earth. The main character, Denise, is trying to deal with the fact that her sister is currently missing and a mother who doesn’t seem to understand or care about the urgency of the situation. Once they do reach safety it’s all about Denise trying to find her sister while also dealing with the assumptions of everyone around her.

Note: I’ve used the author’s stated language preferences. The author has a few other science fiction novels that I haven’t yet read and co-founder and editor of Disability in Kidlit. Check out the author’s website here: https://www.corinneduyvis.net/

“Accessing the Future: A Disability-Themed Anthology of Speculative Fiction” edited by Kathryn Allan and Djibril al-Ayad. The book contains stories by fifteen disabled authors and nine artists. There are a lot of different types of stories in the book with a lot of different ideas about how to do things. Be sure to read both the preface and introduction for some good information about the intent of the book.

“Defying Doomsday” and the follow up “Rebuilding Tomorrow,” anthologies edited by Tsana Dolichva and Holly Kench – In a lot of media about the end of the world disabled people are usually left behind die or end up sacrificing themselves to save others. It’s usually seen as noble because the disabled person would slow everyone down or be a burden. In these stories the disabled characters save themselves and keep on going. Again there are a lot of different kinds of stories here. The follow up book has both sequels to stories in the previous book and new stories.

Non-Fiction

“Being Seen: One Deafblind Woman’s Fight to End Ableism” by Elsa Sjunneson. Written mostly during the pandemic and released late last year. She mixes personal stories with deafblind history and criticisms of portrayals of disability in various mediums.Note: deafblind or DeafBlind is intentionally written without the space and is the preferred way for many in the deafblind community.

“Disfigured: On Fairy Tales, Disability, and Making Space” by Amanda Leduc – this one is about fantasy portrayals of disability more than science fiction but the point is still the same. Disfigured is a collection of essays that Amanda has written detailing several different types of disability portrayals in media and the stereotypes and assumptions that often go with them.

The Language of Disability

Posted on by Jen

Person First or Identity First Language

A while ago I took some courses in accessible design related to the Americans with Disabilities Act. One thing I noticed is the emphasis on person first language. Person first language is well intended and is still preferred by many people with disabilities – most often people with intellectual disabilities. But there is also a growing number of disabled people who prefer identity first language – most often autistic or deaf people. There’s a lot of debate over which is preferred and why people prefer one over the other.

I’m aware a lot of teaching manuals for accessibility and disability still push person first language. I’m also aware that it can be hard to adjust when you’ve been told by those in authority which to use. In the end what really matters is the preference of the individual. One of the issues that comes up with person first language is the tendency of non-disabled people to insist that it must always be used while ignoring the voices of disabled people who say otherwise. Disabled people or people with disabilities have the right to make their own choices. That’s the point that seems to be overlooked in the instructions.

The blog post “Identity First Language” by Lydia Brown goes into further discussion about identity first language vs person first language. There are also several links at the bottom of the post three different preferences including using both interchangeably which I’ve been trying to do with this post. Note that many of the links now link to the web archive as the original blogs have been deleted.

A Brief Mention of Disability Euphemisms

My opinions on the use of euphemism in place of disability could be a whole other post. The short version is I believe euphemism are another well intended thing that ends up feeling condescending more often than not when non-disabled people use them. Others may disagree but that’s how I feel. Again it’s important to listen to others about how they want to be referred to. If another disabled person prefers a euphemism use it. I’m aware some of them were in fact created by people with disabilities which is why I’m not completely against them. It’s the way they’re used, not that they exist that’s the problem.

What Does Ableism Mean Anyway?

Something I’ve also noticed over the years is the lack of awareness about ableism and what it means. I can mostly understand the average person not knowing about it, but it bothers me that anyone who works in disability or accessibility related fields doesn’t know what it means. There are different ways to explain what ableism means:

From Access Living’s “Ableism 101” article:

Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability. Like racism and sexism, ableism classifies entire groups of people as ‘less than,’ and includes harmful stereotypes, misconceptions, and generalizations of people with disabilities.

I also like Talila A. Lewis’ or TL’s “Working definition of Ableism“:

able·ism /ˈābəˌlizəm/ noun A system of assigning value to people’s bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression that leads to people and society determining people’s value based on their culture, age, language, appearance, religion, birth or living place, “health/wellness”, and/or their ability to satisfactorily re/produce, “excel” and “behave.” You do not have to be disabled to experience ableism.

TL’s poist “Longmore Lecture: Context, Clarity & Grounding” provides more detail about TL’s working definition and the connection to racism.

Final Thoughts

The language of disability can be tricky because different people will tell you different things and you will see conflicting messages. My hope is that people start taking the time to figure out where the message is coming from and respect individual choices. I also hope that people start learning more about ableism and how it impacts disabled people. Learning never really ends and there’s always changes.