No-one will escape disability, except some of those who die instantly in accidents, which is not necessarily preferable. We will be unsteady on our feet, or unable to stand, having difficulty remembering. We will stretch out our hands, and someone else will fasten a belt around us and take us where we do not wish to go. Those who are disabled now frighten those of us who are fit and well. We see our future, and turn away.
Fiona MacMillan, a trustee of Inclusive Church, at 20 was non-disabled, getting everywhere by bicycle. Ten years later she was in a wheelchair with Tourette’s. She explained this to us: she might tic during her speech; and having explained it, it became alright. As she was speaking, she made a number of high-pitched squeals in mid-sentence. She carried on speaking, and eventually her squeals ceased. At another point she was waving her right forearm, her elbow on the arm of her chair. I suppose the Inclusiveness advance we could make would be for tics to be alright, and for her not to have to explain them. My first understanding of Tourette’s came from LA Law in the 1980s. And if she had had to attempt to appear normal in order not to be judged, her tics would be unbearable and she would have been unable to speak to us.
She told us to do whatever made us feel comfortable, and suggested pacing the floor at the back if necessary. At one point later in the Diversity and Inclusion Gathering, I wanted to, but forebore. I am no longer a member of my AM, and in part that is because I could not sit still in Meeting. However when she got someone to hand round envelopes to the audience, and continued speaking, she would not ignore that we were talking amongst ourselves rather than listening. First she repeated the first line of her next segment several times, then upbraided us for being unable to do a simple thing like pass round envelopes without chatting like silly children.
A new example of “Quakerly behaviour”, which as Mark Russ says must stop being used as a synonym for “good”. I took notes on her talk (which here is filtered through my understanding and emphases).
Disabled people have a lot to teach other communities. Disability is not a matter primarily of biological difference but power. Our stories help us make sense of our lives. Identity comes from experience and insight. The stories we tell define who we are, but who tells them affects them.
Nothing about us without us.
She is not comfortable being defined by one word “Disability”. We did an exercise stating different parts of our identities: many identities makes a minority of one (I am aphantasic Scottish trans Mensa-qualified Christian, and that may be enough). Lots of things make up our identities.
Her illness is not tidy. Its effects on her physical and ccognitive capacity change all the time. Medical science about it is guesswork. To call her a person with a disability is a lazy, simplistic shorthand. She is neurodiverse, and a wheelchair-user. The labels are useful if adopted for ourselves. Society does not know how to be inclusive. She has to deal with the reactions of others, embarrassment, fear, etc, and their effect on her. (My bereaved friend found herself reassuring or even counselling people who came to condole with her.) When she gets a new personal assistant, she has the person go around in her chair to find what it feels like. She is living on the edge, and it is difficult. She reflects and remembers others’ experience and viewpoint, but is more comfortable with broken, vulnerable people. Her attention slides off the surfaces of complete people (like Jesus, come not for the healthy but the sick). She learns to be amazed. She has to remind people that her illness is not a moral fault or in her control. Accepting and knowing herself, she can accept and know others, and share what she knows of human difference.
How hard it is to be vulnerable! Austerity has cut benefits, and the aggressive measures to cut benefit fraud which is less than 1% of benefit payments hurts people, as well as demonises us as scroungers.
She struggles with loss, rejection and blame. We should be honoured as guests or members of the community. We are not all the same, and our stories are worth hearing. Painful things happen to her hourly, but they are less painful in a community trying to know better so it can do better.
The church cared for people on the edge, which was counter-cultural, but this can be mere charity, looking after needy rather than valuing their gifts. Disabled people want greater autonomy, to be agents of change. 11m disabled people were born healthy, and are adjusting. 43% of adults over pension age are disabled.
There are different models of disability. The medical model analyses the function of a body, and the body is fixed to fit norms. Disability is an individual problem. The social model says people’s difficulties are caused by the way society is organised. Now, public buildings should be designed so that the experience of everyone entering and moving through the building is the same, whether they walk or go on wheels, an architect tells me. There are also Christian models of disabled people as passive recipients of charity or even being punished for sin.
The church can marginalise and isolate people, and focuses on adaptations not people- getting in, but not joining in. So we should ask how disabled people can be part of the prophetic message of the church, becoming witnesses not as “bravely” or “cheerfully” coping with difficulties.
We are all a combination of needs and gifts. When our needs are met our gifts can flourish. The inclusive church must anticipate the needs of the people who are not here yet.
We bring our experience of darkness, weakness and restoration, of our bodies, the source of wonder, pleasure and pain, of waiting, anger and forsakenness. We come not as victims but as liberators.