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Learning to give and to receive

05 December 2014

The Church can offer a witness alongside hard-pressed families, writes Kate Sainsbury

Irene Cormack (mother of david)

Known and loved: Kate Sainsbury with her son, Louis

Known and loved: Kate Sainsbury with her son, Louis

MY SON, now 28 years old, has needed one-to-one care for every hour of every day since he suffered brain damage as a consequence of meningitis as a baby. Throughout his childhood, we struggled as a family to give him that round-the-clock attention, supporting the inquisitiveness that did not understand social or physical barriers, managing his nappies, his night waking, and his boundless energy, which needed channelling, without language or imaginative play to absorb it.

We had just two hours' help a week in school holidays, and had to make up the shortfall, while simultaneously caring for our two younger daughters.

The gap between need and care continues into adult life, when people with learning disabilities may be sent far from families, or into inadequate care arrangements, as described in the report Winterbourne View - Time for Change, produced by Sir Stephen Bubb, and published last week.

After my son left school, he was cared for in the community by an inexperienced organisation, chosen because it was the cheapest provider; and he ended up on a locked Learning Disability Assessment Unit for 17 months.

If this were a medical condition supported by the NHS, partial treatment would be unacceptable; but social-care budgets are not financed in the same way. Consequently, families such as ours, in addition to hands-on caring, spend huge resources of energy battling with service-providers for the help they need. There is no alternative, because providing full-time care means that parents are unable to work, and few families can afford to pay for private support. This also means that there is little energy left for families to form a community to engage politically for change, as other minority groups have done.

THE Bubb report tells a wider world what the community of people with learning disabilities and their families already know: that we are a powerless community, often overlooked, and poorly served by those responsible politically for allocating resources.

We are powerless, because severe learning disabilities tend to give rise to demanding needs that exceed a family's capacity to care.

People with learning disabilities experience loneliness and despair. Families live stressful lives, too, caught in the cleft between love for their child and the struggle to care. The effect touches siblings, grandparents, and wider family.

Part of the burden for families is the question: does it have to be like this? The Bubb report suggests that it doesn't, underlining that everybody has value, and calling for the political will for a change in provision.

This is an opportunity for the Churches to speak with a prophetic voice and call for justice. Theologically, believers know that we are each known and loved by God. Families know this: they love their children deeply, as individuals, irrespective of learning disabilities, recognising their capacity for love.

But they need the help that churches can offer: to enable them to belong and to feel valued, their hardships acknowledged; and accompanied, in a process of mutual enrichment by those who minister and those who receive. Jean Vanier and Henri Nouwen have written inspiringly about the spiritual benefits for all members of communities where this happens.

THERE are opportunities for churches to offer ministries of presence and affirmation to the community of those with learning disabilities and their families. My son was confirmed in the Church of England, through the sensitive recognition of a priest that this was age-appropriate. It demonstrated powerfully that, in the eyes of the Church, he was no different from other 13-year-olds - which did a lot for my own healing.

It also meant much to our daughters that their brother could be the same as everybody else, even while he was different. It enabled the congregation to express their support, and to identify with us. And when, in response to the Bishop's words, my son said "Ah-neh" (Amen), joyful tears were shed.

In the Scottish Episcopal Church, we have developed a whole-Church policy of inclusion that embraces severe learning disabilities. In Comrie, Perthshire, we offer a monthly service with a shortened liturgy for communion. Liturgy is good, because the regularity and repetition can become familiar. In autism, the general rule applies: "What we do is what we do." In the early days, my son shouted and was restless, but in time it became familiar. We start with a greeting song, borrowed from a special-school morning assembly.

The young men themselves participate: one distributes the bread. That is the symbolic action that says it all: God provides for all of us, and, with facilitation, people with learning disabilities can feed us.

These services have provided healing and affirmation for us all. We appreciate the Church's encouragement, and want to share our experience so that others may find the same spiritual peace. We also want to send a message to secular society: the message of the gospel is alive for us today.


Kate Sainsbury is a Reader in the diocese of St Andrews, Dunkeld & Dunblane.

The report Winterbourne View - Time for Change: Transforming the commissioning of services for people with learning disabilities and/or autism was published last month. www.england.nhs.uk

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