Blog

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!

The Darker Story Just Outside the Lens of “Framing Britney Spears” [Repost]

“Spears isn’t an anomaly, and in actuality, conservatorship has few safeguards and checks. Legal personhood is regularly stripped from disabled people through conservatorship, and nobody blinks an eye.”

“Conservators have an enormous amount of power over their conservatees, and there are few, if any, checks on that power. Despite that kind of absolute control, conservatorships are often seen as fundamentally benign. The question of basic self-determination is treated as an afterthought.”

 “I might eat more M&M’s than my doctor would think is in

my best interest for my cholesterol, for example, but nobody’s going to court to ban my access to M&M’s because I’m not perceived as having a disability,” she explained. “There’s this double standard where, if you’re perceived as having a disability, your preferences are subsumed by what’s in your, quote, best interest. That’s just not how humans function.”

Recently there has been much discussion of Britney Spears’ conservatorship. Many have stated that guardianships and conservatorships are not intended for people as young and “normal” as Britney. These discussions neglect the real harm that guardianships can inflict on real disabled people.

Read More Here

This is What Allyship Looks Like…

“There was nothing more liberating for me than laying down my arms and walking away from the fight against difference. There has been nothing more fulfilling than whole-heartedly accepting myself and those I love for exactly what and who we are rather than despite what we’re not, or because of who we may someday become. Because it was then that we all discovered the joy that comes from supporting one another as we strive, not toward the folly of indistinguishability from the masses, but toward the glory of becoming our very best selves. I choose acceptance. This is why.”

“For now, my goal is to continue to work in community with those who share a fire in the belly to disrupt, dismantle, and upend the toxic systems so long ago built on bigotry and fear and to rebuild them together on a solid foundation of loud, messy, brave love. I want to leave my girls a world that welcomes and encourages them – and everyone – to be the best versions they can possibly be, of exactly who they are.”

Written by Jess Wilson of Diary of a Mom. Read more here:

From the Facebook Files: The Adventures of Blind Elevator Travel

I did my postdoc at the University of Washington Medical Center. My office was on the ninth floor of an eleven-story hospital building. Each day I walked about a quarter-mile from the bus stop to the front entrance, traversed much of the hospital lobby, and finally reached the elevators (I think in the B-wing) to ascend to the ninth floor. My walk from the bus stop to my office, and back again at the end of the day, became so routine that I could be buried in thought while doing it. But many spectators found this simple task to be truly incredible.

Frequently, I ran into strangers who made interesting comments about my elevator use. Below is a story of one such encounter, and a little education on how ordinary elevator travel can really be for us blind folk.

From December 14, 2015:

Lady in the elevator at work: “Wow. You know where you’re going better than I do!”

Said lady almost missed the elevator because she thought it was going down instead of up. Then she started to exit on 5, said “oops” then got off on 8.

Sometimes the standards for blind people are low indeed.

BTW, for those who don’t know: I can tell if the elevator is going up or down because when it arrives it beeps once for up and twice for down. I find my

floor button by reading the Braille numbers on the panel. (They’re not just there for decoration!) Then I know when to get off by counting the number of

beeps as the elevator moves.

These things may not be obvious but they’re very simple.

Now, believe me, I’ve made the same mistakes that lady made, more than once. But like most people, I make those mistakes when I’m not paying attention,

or doing something on my phone.

Blindness doesn’t limit a person’s ability to move about in the world.