Disability Day of Mourning
Trigger warning: discusses death, specifically death of disabled people killed by a family member/caregiver.
“Can a mother forget the baby at her breast and have no compassion on the child she has borne?
Though she may forget, I will not forget you! See, I have engraved you on the palms of my hands; your walls are ever before me.” Isaiah 49:15-16
This month’s topic is a hard, yet an important one I cannot ignore. On March 1st each year, the disability community comes together on our Day of Mourning to mark the victims of filicide- people with disabilities killed by their family members. The Disability Day of Mourning began in 2012 when individuals from the Autistic Self Advocacy Network (ASAN) noticed news articles mentioning the murder of a 22-year-old autistic man, George Hodgins, by his mother. In the following days and weeks, journalists called him “low functioning and high maintenance” and his mother “loving and devoted.” People flocked to defend her actions, calling her a “guardian angel” and excusing her actions, if not promoting them. On the wave of this media blitz, copycat crimes happened. More autistic and special-needs children died at the hands of their parents. The focus was on the parent’s trauma raising the child, much of the time the name of the child was missing in the articles and if they were mentioned, it was only to discuss how difficult the child was. Rarely were these parents and caregiver prosecuted, feeding the cultural opinion that disabled lives lack value.
In the wake of these deaths, the Autistic Self Advocacy Network (ASAN) created a filicide toolkit to address the issue, specifically how devaluing disabled lives leads to these deaths. They encourage groups to gather and hold vigils, collecting names and information on disabled individuals across the world who have died by the hands of those entrusted to care for them. The number now exceeds 2,000 names—all valuable, precious lives formed by our Creator. This work has been hard but has not been in vain. The work of ASAN led to a shift in rhetoric when these tragedies arise. Journalists are more careful to name the tragedy—the death of a person whose life had worth and was far more than a burden. Prosecutors are advocating for these disabled victims leading to harsher sentences with an overall focus on the victim’s life and worth. The social messaging is shifting. More disabled voices are being lifted up and speaking out, showing the world their lives have value.
I know this is an incredibly hard topic, but I bring it to light because I believe the church is uniquely situated to proactively support families with disabilities who face social isolation, but we need to be aware. It starts with how we think and talk about disabled people. Do we really need a baby “with five fingers and five toes” to be happy? Do we view a newly diagnosed child in our community as a tragedy or burden? Could we instead give a prayer of thanks for the diagnosis and more insight into the workings of this whole and perfectly created being, asking God to reveal to us the gifts and graces of this individual in our midst? How can we surround the child and family, providing necessary support and respite so the caregivers feel less isolated?
Almost one third (32.3%) of families with a special needs child said they left at least one church because their child was not included or welcomed. One family I know was uninvited to church because their child “looked freaky.” Losing the community this young family desperately needed was heartbreaking, but this family was persistent and found a church that embraced them all, especially their autistic child. When the child would scream during service, the mother would bring them out into the hallway to soothe them. This happened every Sunday, but the beautiful thing was that she was never alone. Someone from the church noticed and joined them in the hallway, sitting beside them no matter how long it took to calm down so they could re-enter the service.
On days when it felt too overwhelming to take the child to church, a phone call would come checking in, telling the parents that their child was missed. During those hard years when the doctors suggested the parents institutionalize the child “before they get too attached,” and when the child was kicked out of preschool, public school, and private school it meant everything to know there was one place their child was wanted, loved, and completely accepted just as they were. And the parents knew they were never alone. Whenever things got too much, there was always someone willing to step in and be backup and support. This is how we do church.
I’m ending this month’s blog with a resource list. I encourage you to take a look at the Anti-Filicide toolkit on the Disability Day of Mourning website. Consider holding your own vigil or marking the day of remembrance in your communal prayers. Each victim has their own page on the site where you can read about them as whole and valuable people that deserve to be known.
“God of Love and Justice, grant us the strength and conviction to love as you would have us love, and to acknowledge the many and varied gifts you give each of your children. Where there has been separation, may God reconcile us. Make us inclusive in God’s church, bold in our actions in the world, and ever more compassionate in our love toward one another, that we may help realize the Beloved Community we are called to live into each day. Amen”
(Prayer adapted from https://www.episcopalarchives.org/e-archives/gc_reports/reports/2022/bb_2022-R038.pdf)
Disability Day of Mourning Website: https://disability-memorial.org
Anti-filicide toolkit: https://autisticadvocacy.org/anti-filicide/
Stats of Disability and the Church: https://church4everychild.org/2016/02/09/what-are-the-stats-on-disability-and-church/
Bridge Blogger Jessica Thompson
Categorised in: Journey with Jessica