Patty Bern points out the human truth that “there are times when it is inconvenient to have a body” and Lennerd Davis says “[w]hat is universal in life...is the experience of limitations of the body.” Yet, it is amazing how society can be so cruel to those whom it identifies as having a “...‘disability’ as a category of demarcation of people with atypical functioning and/or appearance.” (Frederick & Shifrer) The materials this week demonstrated how our society treats those with disabilities as “disposable” (Bern), and places value such as, “...only those who do ‘productive’ work deserve to live” (WinVisible, Marks). Disability can mark an individual as unworthy of the right to procreate and is often “regarded as aberrant” and elicits responses of “condemnation, and often revulsion.” (Marks, p.3) The stories of people like Junius Wilson and Ugly laws (Frederick & Shifrer) should haunt us all.
While these are momentous societal failures, our ableism can show up in the most well intentioned spaces, too. The following is from the UUA website:
Through our Side with Love (Links to an external site.) campaign (formerly "Standing on the Side of Love") we amplify the voices of the oppressed through online media; we show up in partnership at justice events across the country; we lobby national leaders on immigration reform, racial justice, equality for lesbian, gay, bisexual, transgender, and queer people, religious freedom, and more; and above all we work to make love real in the world.
Despite this denominational campaign’s best intentions, it’s name Standing on the Side of Love had to change because the title was ableist. It is notable that this effort to “make love real” in the world still does not include championing disabled rights, even after recognizing that the name itself was problematic.
I have been fortunate to work in churches that have fairly good accessibility, however, there is room for improvement. Why is only one service providing ASL? Why is the closed captioning on Zoom so poorly done? Why are there never enough chairs with arms to assist those who need the stability when sitting and standing? Hearing assistance and braille hymnals are provided, but they are old and worn. Why are there only a few spaces for wheelchairs and walkers? Are there ways to be more accommodating to guide dogs and emotional support animals?
While attending protests in Denver, I noted that one of the most common chants we shout is, “When Black lives are under attack, what do we do? Stand up! Fight Back!” Yet another example of ableist language. Words like “crazy” or “lunacy” are also based in ableist thinking. I know that shifting vernacular is a small item on the long and urgent list of disabled rights actions, but it is odd how once it is brought to our attention, we start to notice it everywhere.
I continue to have great frustration with the ways that we endorse the idea that living with a disability is an awful fate. I was appalled when I read the book “Me Before You” by Jojo Moyes (later made into a movie with Emilia Clarke). The premise is that being a quadriplegic is so awful that death is preferable. This kind of messaging does immense damage. Reducing a human being down to the “[h]egemony of normalcy,” and/or their “essentialism” (Davis) is evil.
I see how this mindset also impacts us at the end of life, where disability can often be a part of the process. Many of the people with whom I worked were vicious to themselves about being “useless” or horrified at needing care with basic functions like toileting. Those that shared a perspective similar to Stacey Milbern when she spoke about how moving to a wheelchair provided her both mental, physical, and emotional benefits, found hospice care could be a rich and profound experience. Those that hated needing help, added to their fear and discomfort. Our cultural myth regarding the glories of independence wreaks havoc on our abilities to see caregiving and receiving as a gift, for both the recipient and provider. Those spaces of absolute vulnerability are a magical place for true human connection. Yet, as a culture, we shut ourselves out from the benefits of that vulnerability due to harmful narratives that fuel our fear and loathing of disabilities.
Fortunately, there were also some folx and ideas that gave me hope this week. I love the idea of “Crip Soup” (Piepzna-Samarasinha). In all social justice, we do best when we play to our strengths. We can not do everything, but we each have ways in which we shine and it is a wonderful idea to keep our focus there.
My favorite idea from this week’s materials was Mia Mingus’ “transformative love.” It plays upon the importance of relational work and our interdependence. This is the essence of my spiritual work, to aim for that kind of love. Robin Bartlett explains "we must continually choose to expand our concept of Love until it is as wasteful, extravagant, and as God-sized as we can make it...[w]e must flex our heart muscles...to include the least, the last, the lost...” That is when love becomes transformational.
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