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
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
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.