“Dignity’s Time”
I want to begin with an invitation to close your eyes if that is comfortable for you our cast your gaze downward and consider the following statements:
I can perform major daily tasks such as waking up, getting dressed, eating, and bathing without assistance, and/or I do not have to worry that my caregiver will not perform these tasks.
I am automatically treated like an adult in social and professional situations; people address me directly.
I can spontaneously participate in activities. I do not have to preplan trips.
Strangers do not treat me with pity, patronize me, or ask to pray for me.
I can see successful role models with similar abilities to mine in a wide variety of careers and positions.
Other people do not assume that my life is of poor quality or not worth living.
You can open your eyes now.
We will all fall somewhere on a continuum in responding to these questions, a few that were posed in an Ability Privilege Survey, adapted from “Exploring the Invisible Knapsack of Able-Bodied Privilege” by Phyllis May-Machunda, with assistance from the Boston University Cross-Disability Club and Disability Policy Consortium. Maybe we once would have answered one way and now that has changed. We are all temporarily abled to some degree; one accident or diagnosis or simply the process of aging away from a life altered in ways we can’t control. And when that happens, we no doubt catch a glimpse of what life might be like for folks who have
lived with disabilities from early on.
I was compelled to share about disability today after attending a Minister’s Association in-service on disability justice presented by my colleague Elizabeth Foster. Elizabeth is a BU graduate with a Master of Divinity working toward fellowship with the UUA. She is member of Equual Access (that’s equal with two U’s) among other organizations, brilliant in my opinion, having spent an afternoon with her, and is herself disabled, using a wheelchair to get around. She speaks with both strength and gentleness, from the heart. 1
Disability is a socially constructed idea, like race and gender. It is defined as an inability to do what is described as “normal,” which is a loaded term because normal is also socially constructed. A medical model of responding to what we conceive of as disability wants to fix whatever is perceived as abnormal in a person’s body or mind. This sets up a situation where disabled people are always seeking a cure and are expected to live in hope of being made better. A social model sees variation in humanity, but also designs its institutions in ways that are selective about who can participate. It suggests that change should occur within society so that disabled folks can be a part of those institutions. It presumes that action and advocacy are the way to “fix the problem,” leaving the disabled person in the position of someone with a problem or even feeling like they, themselves are the problem. Theologically speaking, faith traditions have looked at disability as a judgement or curse, as a state of childlikeness or untouched purity, as an opportunity to practice charity.
Disability discrimination, commonly known as ableism, plays itself out in many ways in our culture. Disabled people are the first to die in a natural disaster, often can’t marry or accept employment without losing necessary benefits, can in some cases legally be paid lower wages and make up about half of those who experience police violence. The disability rights movement has done important work but has not met people at the intersections of their lives and has focused primarily on mobility impairment while decentering mental illness.
We are a caring people here at the Meeting House and we have taken some steps toward a more just approach to disability. Folks with mobility impairment can access our sanctuary, our social spaces, our restrooms. The hearing impaired can use assistive devices making our talks and services more accessible. And we are accepting of difference. Our new banner invites people to “Come as They Are,” which has implications in many areas of our lives. But, when Elizabeth asked pointedly on my zoom screen, “Could I preach from your pulpit?” I felt the sting of having to say no to myself, not really, not without making accommodations. I remember when we posted an office position and had to be honest and say that a person in a wheelchair
could not work in our space as it currently exists; a minister using a wheelchair could not access the office or the chancel. And I felt a real tug on my heart when one of our service leaders with mobility impairment was sharing the new safety instructions about exits and commented that their only way out in an emergency was clear across the sanctuary. I share these things, not to make us feel bad about our progress, but to highlight that there is still far to go, that in most institutions, religious and otherwise, this is the case.
I invited the Keenan’s to share a bit of their story today because I have seen in the way they live their lives as a family, a real sense of what disability justice can look like, how it can be embodied. Jackie’s absolute “NO!” speaks volumes. I was raised in a household with a deaf person, and I wish I could say that we did as well by them, but I am certain that as siblings we were not always as kind as we could have been. Your minister is very human and susceptible to all the ways that disability has been understood and handled over the course of her lifetime.
Maybe you have similar stories, disabilities of your own, family and friends who have similarly coped with the journey. We are all making our way. It all comes down to dignity in the end. We affirm and promote the inherent worth and dignity of every person, while recognizing that this is a tall order. Our Principles were never meant to be easy! I read that the congregational certification program of Equal Accesses ‘Accessibility and Inclusion Ministry’ has decided to wind down its efforts this year due to a lack of new congregations interested in pursuing certification and in those signed on completing it. And I get it! We can’t all do everything! It is a gift that they are still about the business of educating and advancing anti-ableism work in our faith tradition. I am grateful for the afternoon spent with Elizabeth and grateful also for the times when I have been called out for ableist words or actions. Not always pleasant or comfortable, but they are opportunities to deepen my understanding of this life.
Dignity and inclusion go hand in hand. We cannot affirm the former without taking steps toward the latter, whether that is in our personal lives or our faith community or the wider communities in which we live. Disability justice, much like reproductive justice, which we have spoken about before, is about those who are most affected being the ones who determine what is best for themselves and therefore requires the least affected to ask and defer. Audre Lorde is often quoted as saying that, “We do not live single issue lives.” Disability justice asks us to consider the intersections of ableism, white privilege, capitalism, and heteronormativity as they conspire against the disabled. There are so many layers to our experiences. It asks us to recognize that people have inherent worth outside of commodity relations and capitalist notions of productivity. Each person is full of history and life experience. I like to think that we are all perfect, just as we come. There is no perfecting going on here – some higher, better, to be achieved in a next life or always striving toward in this one. It is not a sustainable notion of living and being for any of us, leaving us feeling less than in the process. How much more so for those of us whose life intersections include what our culture has termed disability.
Yesterday was the United Nations International Day of Persons with Disabilities. Disability inclusion is a part of their overarching human rights agenda that is committed to leaving no one behind. This year their focus is on innovation for disability inclusion in the areas of employment, reduction of inequality and in all forms of sport. And isn’t this really what we are interested in? Leaving no one behind? Ensuring that there is a place for each of us to come as we are and to live fully as that person, without thinking about accommodation because our idea of normal already includes all ways of being. In this vast sea of humanity there are no two beings who are exactly the same! How exciting is that! Can we cut through to a place of collective human rights in our world that is inclusive of all bodies and communities? People with physical impairments, or who are part of a sensory minority, have emotional disabilities or cognitive challenges or chronic illness exist in all walks of life. It is foolish at best to consider normalcy as anything less than inclusive of all the ways human beings show up.
Our mission says that we nurture inclusivity and seek justice and equity. These are not easy things either in a world where competition and isolation are running rampant. We need one another on this journey because when we are doing the hard work of culture change it is easy to get discouraged. Part of being a Unitarian Universalist is coming together in community to engage in the hard stuff, promising one another a safe space to do so, acknowledging when we fall short and moving ahead with open hearts and minds. We won’t always get it right where disability is concerned, as is the case when exploring any form of injustice, but our faith
tradition makes a way for us, provides for us a learning ground in which to practice being our best selves.
I invite you today to open yourselves to the concept of justice and inclusion in yet another way as our world has somehow managed to leave good people behind. I invite you to move through fear and apprehension alongside one another as we work to create a different kind of world. I invite you to come as you are, whatever your abilities, into this space of centered in love, in service, in peace, seeking always to widen the circle of community.
Blessed be and Amen.
Rev. Tracy Johnson, UUMH Chatham, December 4, 2022
1 With gratitude to Elizabeth Foster, MDiv, and her presentation “UUMA South Shore Workshop 2022” and the
wealth of resources she made available to colleagues for the furtherance of disability justice.
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