Where Were You Thirty-one Years Ago?

Where were you on July 26, 1990, when the Americans with Disabilities Act (ADA) was signed into law?

When it happened, I was 5 years old, and just beginning to consolidate long-term memory. I was just beginning to understand and retain time as a continuous flow, rather than retaining brief, disjointed clips of experience.

I don’t know what I was doing on July 26. I know it fell a few weeks after I moved into my sister’s bedroom with her (her idea) and shortly before our first cross-country family vacation I can remember, going to Maine to visit my aunt and uncle. It fell almost exactly a month before I started kindergarten at the local public school.

I wonder if my parents were aware of the ADA’s signing or of any of the activities that led up to it in the preceding months. If they were, it was unlikely they discussed it with me then, nor would I have understood what it meant. At the age of 5, I didn’t know what a disability was, nor that I had one. I barely knew what the word “blind” meant at that point. I had not yet been told that I couldn’t play ball with the other girls or sit with my friends outside the “handicapped” seats on the school bus. I had no concept yet of being different from almost everyone around me, and I automatically assumed that if my peers got to do something, I got to do it, too. It would take several more years of life experience before I could really appreciate what it meant to be part of a “protected class.”

Those of us in the “ADA generation” perhaps grew up taking for granted that we have a right to access. It may be hard for us to believe that there was a time not too long ago when our right to access places of business, employment, education, and other amenities was not guaranteed. At the same time, though, legislation has not guaranteed the implementation of access. Many of us still face the same exclusion, at least occasionally and sometimes often, that the law was meant to prevent.

I’m not sure when I first learned about the ADA. It was probably in high school, when my Teacher of the Visually Impaired (TVI) went out of her way to teach me about the various laws that protected my educational rights. Most disabled students never receive explicit instruction on their legal rights. Nor is the history of the disability rights movement taught in high school or undergraduate-level history classes. It’s usually only found in specialized books or advanced courses on the topic.

I wonder if the current generation of disabled children are learning about their legal rights. Kids are hearing about other equity issues, such as the inclusion of people with LGBT identities, younger than I did. I wonder how it might have felt to find out what my disabled elders had done to secure my rights. Maybe not at age 5 when the ADA was first passed, but when I was 8 or 10 or 12 years old, and starting to ask the tough questions. It might have been comforting and refreshing to know that, even though the majority of people viewed me as different, there were laws on the books affirming my right to fully participate in the community.

On the 31st anniversary of the ADA, we celebrate. We also bemoan all the work that still needs to be done to fulfill the spirit of the law. As part of that ongoing work, may we consider how we can make “disability history” more mainstream, how we can educate and empower the next generation of disabled people to continue the labor toward equality. I dream there may come a day when laws like the ADA are no longer necessary, because it will just be commonly accepted that all bodies and minds equally belong.

Disability Employment: Challenges, Strategies, and Opportunities

A few weeks ago, I was interviewed on the LVB podcast about disability employment issues, particularly focused on blindness. From the adolescent looking for their first job, to an older adult returning to the workforce or training for a new career, navigating employment as a disabled person presents a variety of challenges, but also opportunities.

Note: The interview includes automatic closed captions. If you’d like a full transcript of the interview, email arielle@disabilitywisdom.com.

Watch the interview here

Living with Invisible Disabilities [Guest post]

“So if you encounter someone with an invisible disability please have compassion, patience, empathy and be understanding when we may say or do things that don’t seem ‘normal’ or we need alone time to rest or cannot work as much as some people because of our disability. We’re just trying to find a place in the world that wasn’t built for us.”

This week’s post comes from Amy J, a disability, mental health and social justice advocate who lives and works in the San Francisco Bay Area.

I was in my mid-30s when I was diagnosed with depression and anxiety. My other diagnosis was changed from schizoaffective disorder to autism spectrum disorder recently at the age of 41. I’ve always known I was different and never quite fit in.

As a child, I cried a lot for no good reason. I would much rather make color charts, read or line up my stuffed animals than play outside like my brothers and sister. A bully would single me out on the playground because I was alone. I didn’t like going to elementary school and would fake illness to get out of it. I’m sure this harmed my ability to socialize and ability to learn the rules of being a neurotypical child. I didn’t exactly have good role models at home where I can learn such skills. I’m pretty sure my dad is autistic because he has communication issues and issues expressing his anger. My niece also got diagnosed at 14.

As a teen, I was a pretty quiet kid. I would connect with others based on their music interests and always had different friends every year. I spent a lot of time in my room, alone listening to my favorite radio station and collecting magazines, articles and fan club memorabilia related to my favorite bands. Music is one of my special interests because it won’t leave me like people tend to do. Other ways I connected with others was my love of The Peanuts Gang. People I barely knew would give me things with Snoopy on it that I amassed a large collection.

College was where I started to make real friends and as an adult, I finally started to figure things out socially, although I have been called abrasive, abrupt, blunt and direct because sometimes in large groups I would interrupt trying to hear multiple conversations or be overloaded with so much going on I would shut down. I tend to not be able to read people’s emotions or read a room very well where I offended people unknowingly that friends would drop me because of something I said or did. (They also didn’t communicate this to me or I would’ve tried to rectify this behavior). Now I ask people to let me know if I’ve said or done something offensive so I can correct it or apologize and try to make it a habit to do better. Neurotypicals want us to read between the lines when many of us are incapable of that. Just like Brene Brown says, “Clear is kind.” Most offenses are really just misunderstandings and I just want to be understood. These are all common characteristics of women with autism but since they’re so subtle we’re usually just put in the weird or different bucket.

Finding and keeping a job was always tough for me. While I was great at communicating with the written word, my lack of small talk and getting down to business right away didn’t exactly put me on the list for promotions. I was fired from several jobs or other jobs would cause me to burn out or bore me to tears. While my other friends were moving up in their positions and earning more money, it was stagnant for me. It wasn’t until I was under an enormous amount of stress that led me to have a really bad psychotic break that led me to intense therapy and a diagnosis of major depression with psychotic features and generalized anxiety that the pieces started to fit.

After speaking more to my therapist about my communication issues, unstable relationships and hard time with empathy, I thought I might’ve had borderline personality disorder or even narcissistic personality disorder. He recommended I get re-evaluated and after a long waiting period, I took a five hour test and more waiting for results, I finally had a diagnosis – autism spectrum disorder. Since most testing is geared toward boys, girls often get misdiagnosed or diagnosed later in life. I didn’t even think of this as a diagnosis but the more research I did and the more people I talk to who have it, it makes sense. I finally have found my tribe.

While many people think I don’t have it because I’m mostly neurotypical passing, and they’ve never seen me have a meltdown or my form of stimming which is plucking my eyebrows. My communication skills have always needed work especially when it comes to navigating conflict and it has taken me well into adulthood to finally find and understand real friendship. Thank goodness for Dialectical Behavioral Therapy (DBT) which has saved me in more than a few occasions. I’m still learning everyday how to do better. I wish I had known about my issues sooner so I don’t feel like I have missed out so much in life. Some may not want or need an actual diagnosis but for me it was freeing to know that I wasn’t damaged or the only one struggling with my issues. I finally understood why I struggled in areas most people don’t think twice about.

So if you encounter someone with an invisible disability please have compassion, patience, empathy and be understanding when we may say or do things that don’t seem “normal” or we need alone time to rest or cannot work as much as some people because of our disability. We’re just trying to find a place in the world that wasn’t built for us. If you really want to be an ally, follow influencers with different disabilities and of course listen to us and treat us with the same kindness and dignity you would with someone without a disability. Remember we’re different, not less and there’s nothing about us without us.

If you want to chat or connect, send me an email theycallmeamy007@gmail.com

This Wasn’t a Vigil About Jack: My Hometown’s Reaction to a Disability Day of Mourning Vigil

Content warning: discussion of filicide, ableism, mention of drowning

Today is “Autism Awareness Day” in many circles. Unfortunately, proponents of autism “awareness” tend to focus on the deficits and challenges of autism instead of the tragic effects of ableism against autistic people, up to and including the killing of disabled people by their family members. On this week’s blog post, Mandy Wall shares an experience of backlash when trying to raise awareness of filicide in their small town. Mandy Wall (they/them/theirs) is a genderfluid autistic advocate and self-advocate whose special interests include cooking, cats, film culture, video art, and historic house museums. They have a B.A. in arts management and film studies from Sarah Lawrence College and their main interest is advocating for greater disability inclusion and accessibility in the arts and culture sector. They are currently working towards earning their Master’s degree in Museum Studies at Harvard Extension School. 

You can follow them on Twitter @_Mx_Mandy or follow their cooking Instagram @meals_with_mandy

Filicide is the legal term for when a parent or family member kills a child. In the disability community, filicide is used to describe the murder of a disabled person at the hands of a family member or caregiver. According to the Autistic Self-Advocacy Network (ASAN), there are over 1,300 documented cases of filicide involving disabled people all over the world, dating as far back as 1978. There are likely hundreds more that we don’t know about.

The homicide/suicide of Jack Crowell, a 22-year-old disabled man, and his mother is one of those deaths and it happened in my small suburban hometown in Connecticut on July 31st, 2020. Jack was in the car with his mother when she drove the car off the road into a lake, killing both of them. It wasn’t until February 17th, 2021 after an extensive investigation by the police that it officially ruled a homicide/suicide, citing evidence from a boater who tried to help before emergency services arrived but Jack’s mother repeatedly refused.

The news prompted my friend and I to become vigil coordinators for an annual nationwide event known as Disability Day of Mourning, a vigil for disabled victims of filicide that takes place on March 1st organized by ASAN with individual vigil sites across the country. The main part of the vigil is reading the names of the victims out loud to honor their lives and create a space for community support afterwards and start conversations about filicide and how to prevent it. I was a site coordinator in 2018 while co-chair of my school’s student disability advocacy group so I knew what my friend and I were getting into and I felt personally motivated to help coordinate a site in my hometown because I saw Jack in school all the time growing up since he was in the grade below me.

I thought the event’s proximity to the news of Jack’s death was a perfect opportunity to talk about filicide in my town because it wasn’t an abstract concept-it had a name and face. My friend and I wanted to show that Jack’s death is not an isolated incident and is part of a larger systemic problem where violence against people with disabilities is excused and even justified, that the people in my town can take action so this doesn’t happen again.

Who would argue against wanting to protect people with disabilities from caregiver violence? A lot of people, apparently.

First came a Facebook comment on the event page from someone who thought the phrase caregiver violence was “insensitive and narrow-minded” (even though this person recognized that “that’s technically what it was”). Then came the removal of my post from a town Facebook group after 30 minutes followed by frustrating and condescending conversation with one of the group moderators who claimed my advertisement needed to be screened by town Social Services, even though it broke none of the group’s rules and even included a trigger warning. Then came bans from multiple Facebook groups centered around providing resources and advertising disability-centric events. Finally, an email from the town Social Services department calling the vigil “disrespectful” and not in the family’s best interest.

This was all just for trying to advertise the event and provide resources for people to learn more about filicide and how to talk about it.

Based on my own experiences with ableism growing up in my hometown, I was expecting some backlash-especially because the town journalist received numerous hostile comments when he posted the story on Facebook ranging from “I almost wish it was kept private” and “it’s nobody’s business” to “I can’t think of a reason why this needs to be publicized” and “f’ed to post this”-but I didn’t anticipate just how self-centered it would be. My town’s opposition to advertising the vigil was rooted in it being “too close” to the news declaring the incident a homicide/suicide and Social Services wrote in the same email that called my vigil “disrespectful” that they wanted to protect the family from unintended consequences as a result of unwanted publicity, as if the vigil was for Jack alone and that I was going to plaster his family’s address and contact information all over the event.

This wasn’t a vigil about Jack, it was a vigil about the discriminatory and cruel systems in our society that lead to Jack’s death and the deaths of hundreds of other disabled people at the hands of their caregivers.

The most ironic part of the backlash I received was that it was often accompanied by an acknowledgement of “Yes this needs to be recognized and talked about,” yet in the same breath insisted that now was not the time to talk about filicide or caregiver violence. Social Services told me that “the town supports all organizations that advocate for the rights of others” but the outright refusal to have this conversation or elaborate when it would be appropriate to talk about filicide conveys a sense of wanting to perform support for people with disabilities rather than actually investing time in addressing legitimate issues facing the disabled community. While this was happening, the moderators of the same town Facebook group that took down my vigil post approved a post announcing that a local wine store and the police department will be holding a fundraiser for Special Olympics Connecticut.

Apart from the obvious double standard and talking over an actual disabled person, the implication here is that people in my hometown only care about disabled people as long as they can be infantilized and turned into pity objects or inspiration porn. This is not a mindset exclusive to my hometown, this is a pervasive problem with many non-disabled people thinking they are being allies. Not only does this ignore the spectrum of disability but it represses the agency of disabled people in favor of the well-intentioned but horribly misguided ideas held by non-disabled people about what they think we need, often taking the form of superficial support such as charity fundraisers or showering us with attention and praise every minute we’re in public.

The fact of the matter is attention and awareness does not equate to support and acceptance. The town paper could write all the inspiration porn articles it wants about Jack running in my town’s annual 5K every year but that was not and did not get him the support he needed and did nothing to challenge the ableism that ultimately killed him.

I do not think this was a misunderstanding of Disability Day of Mourning in the slightest (I included several links to ASAN’s official website and the official Disability Day of Mourning page in an email to Social Services for them to look at). I think this was my town wanting to believe that Jack’s death was an unavoidable accident rather than the consequence of a system that deemed Jack a burden to those around him because of his disability. Whether the people in my town know it or not, their refusal to talk about filicide and the prevalence of ableism in our society is going to get another disabled person killed and when it does happen the cycle will repeat: they will convince themselves it was a tragic accident and/or sympathize with the caregiver over the victim, lash out at anyone who says otherwise, insist that it is “too soon” to talk about the victim or honor their memory, and carry on with their lives without bothering to ask themselves why they are so defensive when someone tries to start a conversation about violence against people with disabilities.

If my town cared about Jack as much as they say they do, they would want to commit themselves to challenging and dismantling the very forces and systems that killed him. Jack’s death was preventable and the deaths of other disabled people at the hands of their caregivers are preventable, but only if we commit ourselves to eradicating ableism.

We need to call out and challenge ableism in our communities. This includes reporting individuals who make derogatory remarks against disabled people or have committed any form of violence against them, challenging the mindset that disabled people are a drain on society, and promoting acceptance and community integration and inclusion in public spaces.

We need to rethink legal support systems so they don’t view disabled people as faking their disability by default and require them to jump through loop after loop to “prove” it.

We need to talk to our representatives and senators at the state and federal levels to demand equal protection for disabled people under the law. It is still legal in most states, Connecticut included, to pay disabled employees well below the minimum wage under Section 14(c) the Fair Labor Standards Act. There are hundreds of businesses and programs for disabled adults that actively observe this practice and a comprehensive list can be found here: https://www.dol.gov/agencies/whd/workers-with-disabilities/section-14c/certificate-holders

We need to prosecute perpetrators of violence against disabled people as we do for any other hate crime, because that’s what it is.

We need to include disabled people in diversity and inclusion initiatives and in our advocacy across the board, because the identity of a disabled person does not exist in a vacuum and often intersects with gender, sexuality, race, religion, and ethnicity.

Most importantly, we need to listen to disabled people. Not their caregivers, not siblings, not doctors-actual disabled people. We are the only true experts on disability because we live it every day.

I’m not interested in coddling the feelings of non-disabled people because their comfort does not take precedence over the humanity of disabled people. If they find the term “caregiver violence” so “insensitive” I dare them to ask themselves what is more insensitive-downplaying violence against disabled people or not acknowledging our personhood and right to life simply because we’re disabled?

Art of inclusion: Celebrating 100 Years

Last night I attended this wonderful virtual concert and gala sponsored by the American Foundation for the Blind, celebrating a century of work to create a world of no limits for blind Americans. The performances featured a culturally diverse group of talented artists, and the concert included captions, ASL interpretation, audio description, and a transcript, making it equally enjoyable for sighted, hearing, blind, D/deaf, and deafblind attendees alike.

Check out the video and transcript here!