The text is divided into sections after a brief introduction, beginning with coverage of the author’s background as a disabled woman and her expertise in bioethics. The dominant models of disability (Medical and Social) are outlined and contrasted, arguing that both are ideological, with little reference to people’s lived experience. Scully proposes a broader view, one which includes spiritual aspects. She assesses theological views in the Christian tradition, stressing that these are framed in terms of imperfection rather than seeing suffering and limitation as part of the human condition, a condition which can be positive and creative.

Scully says reassessment is urgently needed in an era when technical developments raise new moral dilemmas, such as screening for gene defects in embryos which comes close to Nazi theories of eugenics and raises human rights issues. Assessments of viability are made at the start of life, and at its close, based on highly problematic notions about ‘Quality of Life’, moving past negative language and cultural assumptions to achieve a balance of interdependence and difference. This requires deep discernment, which will take time. She lays down her challenge to initiate discernment in each community to take account of its specific context and lived experiences of disability.

I have never suffered major injustice or significant exclusion, yet like the author, I have lived experience of birth defects (rubella damage) and later acquired disability. My experience confirms many of Scully’s observations. Hearing loss since birth has been relatively easy to navigate, but becoming wheelchair-bound more recently has been an increasingly isolating experience. It’s been an eye-opener.

In the wider community I’m often talked down to – literally and figuratively. Patronising voices imply that I’m an inferior being, often proffering unsolicited advice, while shopkeepers and waiters talk past me to my carer as if my impairment is mental as well as physical. My social circle has shrunk dramatically since I had to stop driving – seven close friends continue visits and keep in touch, others stay away. My Home Care package provides wonderful carers but only for 45 minutes each weekday, otherwise I have only my cat, computer, TV and books for company. The same four walls become tedious, as you might expect. When the weather allows, I can get out on my mobility scooter for a brief neighbourhood excursion. I’m also taken shopping by a carer once a week, but lack of disabled access and parking make this difficult, eating up the allocated time. I’m ferried to my local Meeting most Sundays, which allows for some group interaction in addition to spiritual nourishment. I’m truly grateful for the support of Friends to get me and my wheelchair to Meeting. Even so, the conversation after worship mostly hums above me among the Friends who are standing and chatting. It’s understandable – I can’t expect everyone and everything to fit around my needs.

Unrealistic expectations of the disabled and of society is noted but not addressed by Scully, nor are the wide range of problems experienced by people with very different impairments, some suffering greatly with pain, others pain-free but more excluded from society, others who are not obviously disabled. Covering the range of lived experiences might well be too detailed for a single lecture.

I’d also have liked to see more about how we might approach the practical discernment necessary for rethinking our gatherings. Martha Nussbaum, a well-known philosopher in the US, has developed what is known as the Capabilities Approach which builds on the UN Declaration of Human Rights to identify a clearer basis for policymaking by governments and other authorities. Such an approach could help to ground the daunting discernment task and ensure progress in real terms.

This year’s Backhouse Lecture topic interested me, naturally. Unfortunately, my disability means I can no longer attend Yearly Meeting in person, while Zoom access doesn’t work well due to significant hearing loss, so I’ve had to wait for a printed copy to access the content.  It’s been well worth the wait.