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Disability and the Dignity of Life
"People are not burdens. Rather, they *are* burdened."
This Thursday, I’ll share highlights from our discussion of gender-neutral language to describe pregnancy and labor. On October 18th, Other Feminisms turns one year old! We’re nine people from 1200 readers—100 for every month I’ve been writing and you’ve been responding.
This week, I want to share a triptych of good pieces on who fits under the umbrella of disability, and how we respond to this category of need. I have a forthcoming review in Plough of two books on design for and by the disabled: What Can a Body Do: How We Meet the Built World and Making Disability Modern.
Women are partially within the sphere of the disabled—pregnancy leave, when offered, is provided under the auspices of medical disability accommodations. When the world is designed for male proportions and capacities, we can find ourselves trying to find workarounds to navigate a hostile design.
Disability as a Big Tent
In The New York Times, Ari Ne’eman, the former executive director of the Autistic Self Advocacy Network, made the case for considering disability broadly. I’m excerpting just a little below, I recommend the whole piece:
Disability rights law goes beyond many other civil rights statutes. The A.D.A. prohibits obvious discrimination, but it also requires reasonable accommodations and modifications — changes to typical policies and practices to give disabled people equal access and opportunity to participate. This is an obvious necessity for people with disabilities, but it also offers an intriguing precedent for the broader public.
Though the disability rights movement emphasizes the importance of proud disabled identity, many — perhaps most — who benefit from disability rights don’t know it. Few see themselves as part of a disabled minority group. The disability rights movement remains obscure, even as its legal and policy victories have become more relevant than ever. Increasingly, activists are struggling with a simple question: How do you go about representing a constituency that doesn’t know you exist?
A Preferential Option for the Disabled
At First Things, JD Flynn, the editor of The Pillar and the dad of three kids (two of whom have Down syndrome), wrote on the ways that religious communities should be signs of contradiction to an ableist world.
He sees more people willing to support his kids and his family by condemning eugenicist talking points than by actively including the disabled.
Even in our communities, people with disabilities find themselves too often standing with their noses pressed against the glass, listening to very nice people explain why accommodating them is too much, even as they cluck their tongues at the pro-choice monsters at Planned Parenthood and in Scandinavia.
Denominations and dioceses need to develop religious education programs designed for people with intellectual disabilities. Business owners need to hire people with disabilities and advocate for job inclusion programs. Charitable, political, and religious organizations need to invite people with disabilities to a seat at the table where decisions are made.
Jen Fitz had a good column a few years ago on the kinds of accommodations that parishes rarely prioritize. (Among them: wheelchair-accessible confessionals). Religious institutions should be marked by the accommodations we make as much as by our art.
A Visible Testament of Worth
When we make the vulnerable visible, prioritizing their needs, and emphasizing how very broad the experience of dependence is, we offer a rejoinder to the dominant story in our culture: some people’s needs are too large to be worth bearing.
A patient’s choice to end her life is not “defined” by her, if by that we mean that it is a choice that is just about herself. Rather, it is a declaration about what kind of life is worth living. It is thus also a statement about other people’s lives, a statement to others about when their own lives are worth living or not.
Many of my patients tell me they don’t want to become a burden. Who taught them that? They learned it from a culture that values fictional autonomy of the individual. The argument that a patient who feels she has lost autonomy should have a medical option to end her life does not just leave matters up to the individual, but solidifies this cultural myth, telling everyone that the life lacking full autonomy is not worth living. Sadly, some of the most vulnerable people are ready to believe that — not by their own choice, but by the choice of a culture declaring that dependence is undignified.
A yet better way of looking at it is that people are not burdens. Rather, they are burdened by illness and suffering. Some of that burden can be shared with others, and we bear it with them. When we deny others the opportunity to help bear our burdens, we deny them a means of loving us in our dependence, in a most profound manifestation of our humanity.
I’d like to ask this week about where you’ve seen the kind of counter-witness that JD is asking for.