LOUIS is my 32-year-old son — handsome, energetic, his face lighting up at my arrival, producing in me a corresponding rush of love: my son, a gift from God. Louis is a person, with a life history; hopes and fears; and preferences in foods, activities, places, and people. The neonatal brain injury that arrested his cognitive understanding at the developmental age of a toddler damaged his capacity for spoken and understood language; so he can give no first-person report of what he thinks or feels — but he is no less a person. We who have capacity have to piece together the clues to understand him.
When Louis is not understood as a person, but simply seen for the challenging behaviour he shows, he is like Legion in the story in Luke 8.26-39: the sum of the responses to the ill-treatment that has been imposed on him. Legion lives in the tombs. He has broken the chains with which the townspeople bound him, and escaped their guard. He is solitary and tortured, crying out to Jesus to be recognised.
LOUIS’s story is similar to Legion’s. Louis was evicted from his care-home as it closed in March 2018. He was sent 250 miles away to Hartlepool, for eight months; then brought back, to an arrangement set up to fail, which lasted only seven weeks. He was then detained in a Learning Disability Assessment Unit: kept for four months in solitary confinement, in an 18-foot-by-12-foot room, restrained chemically and physically. Here he remains.
In all three changes, Louis was frightened of unfamiliar surroundings, fearful of strangers, unable to make himself known, and angry and frustrated. As Penelope Leach writes of toddlers in Babyhood, her seminal work on child development, “feeling angry makes him [the toddler] anxious and afraid, while feeling anxious and afraid makes him angry. His own emotions are his worst enemy.” And Louis, unlike a toddler, is six feet tall and weighs 13 stone. We are all frightened of Louis when he is angry and violently destructive.
JESUS met Legion as a person, and asked him his name. Legion’s encounter with the personification of love, fellowship, justice, creation, restoration, and hope restored him to well-being. Likewise, Louis, understood as a person, is calm. On my almost daily visits, we talk, walk, and visit cafés and swimming baths. Staff have learned about him, and I have trained them. He is now allowed into public spaces on the ward — although he is isolated again when he protests at boredom and being ignored. He waits now for future care to be arranged.
Seeing Louis as a person is costly. I have driven 100 miles daily since January. I do it as a mother, because I love him, because Louis is a person — with feelings — who needs my support. Good-quality professional care is costly and is dependent on staff training, good management, and a systemic therapeutic approach to patients as individuals. It is costly in courage, for patients as well as staff (and parents) to work through setbacks.
Local authorities — on behalf of taxpayers — look for the cheapest means of meeting needs. They see Louis, like Legion, as an economic unit; like the swine on the hillside, into whom the demons entered. Managers are attracted to best-priced solutions, which translates into poorly paid, scarcely trained staff relying on force and incarceration to overcome protest. The public — the townspeople in the story — turn a blind eye. Panorama recently exposed shocking abuse in Whorlton Hall, County Durham: a home run by a for-profit company, Danshell, which was responsible for Louis’s care in Hartlepool.
A company related to Danshell is opening a new home near us. The brochure is glossy. Local-authority managers like its vision; they want patients to go there, because it is cheaper than a personalised care package. But the care will only be as good as the quality of its staff training, management, and supervision; its insight into individuals; and adequate transition arrangements. There are no cheap shortcuts. The real price is paid by the patients.
IN LEGION’s story, the drowning of swine shows the economic cost of healing one man. Pigs are valuable: he is not. Today, treating people with complex needs as people still costs the community money. Yet in the long run it is more expensive — economically, and in personal terms — to continue a cycle of failing, abusive placements, than to look at small, family-like communities for people with the greatest needs, properly staffed and systematically person-centred.
The founder of L’Arche, Jean Vanier, had the holy inspiration to create communities in which people with and without disabilities would live together, within the larger hospitality of God. Vanier originally brought home three men — Philippe, Raphael, and Dany — to start the first community; but even Vanier, that first night, could not “reclothe Dany in his right mind”.
Louis, Legion, Dany: all fall outside the scope of community-care provision. But it need not be so. This is an issue of justice, and of human rights.
LAST year, I wrote to Vanier, describing my vision of a small community for Louis and other residents. It would employ staff already skilled in meeting complex care-needs, yet would retain a community ethos that reached out to the wider world and faith groups. We have funding for a property. I asked whether we might call ourselves “The Dany Foundation”, and Vanier gave us his blessing.
Louis’s life and Legion’s story tell us that, if we fail to understand the person and to provide care appropriate for that particular individual, they become the list of “challenging behaviours” that they present. Jesus gives us this example of healing complex and profound mental disabilities. Jesus also challenges the fears of the townspeople. He commissioned Legion to have courage, remain, and bear witness to what was required; to assuage the guilt of the townspeople; and to give them a new vision and hope for the future. That is our dual task today.
I CONTINUE to ask, through the pages of the Church Times, for support for my vision, thanking those who have already responded. Please pray for Louis, the Dany Foundation project, and more widely, people detained in Learning Disability Assessment Units on delayed discharge, or placed involuntarily out of country (those identified by Sir Stephen Bubb in his report on the abuse in Winterbourne Stoke). A volunteer to co-ordinate that would be very welcome.
We are in the process of creating a registered charity, The Dany Foundation; and I expect that to go through in a month. A volunteer to create a simple website for the foundation would be a great blessing. We have seed-corn funding for three years as soon as we are a charity; so we have funds for the costs involved in these two items.
Kate Sainsbury is a Reader in the Strathearn Group of Churches in the Scottish Episcopal Church, and can be contacted on firstname.lastname@example.org (Facebook page: “Appletree Community”).