Camphill in Ireland needs our support

Here in Kilcullen, Camphill has been part of the community since 1986 at Dunshane House, and since 1992 for the Bridge Community which was its first offshoot, writes Brian Byrne. Most people living here don't need to be told just what an amazing service they provide to their residents and day clients.

But the Camphill organisation in Ireland is in difficulties. The best way to explain it is to reproduce below a post which has been published by the Camphill Ireland Family and Friends. It is worth reading all the way through. It is important to do so. We don't have to do anything after reading. But maybe we should.

Institutionalising Care

It is a fact that all of us will have some level of disability at some point in our lives and most of us will need care at some stage. Yet in Ireland we fail people who need support — people with disabilities, the elderly, the homeless, children. We are one of the wealthiest countries in the world and yet in respect of some citizens we are pretty miserable. This is again evident in Kitty Holland’s Irish Times piece, October 2021.

We have a grim history when it comes to protecting people with intellectual disabilities. Until more recent decades, our fellow citizens were treated not only as second class but were marginalised to the point of being considered a forgettable minority. It was quite usual for people with learning disabilities to be placed in psychiatric institutions. There were no options for families. The state was happy to hand over their responsibility to charities to ‘look after’ them. It was either this or people stayed at home with parents, living an unnatural, unfulfilled existence, remaining dependent, without friends to call their own and without freedom to live their own lives. Thankfully we have moved on, in some respects.

It was into this bleak and callous place that was Ireland in the 1970’s that Camphill arrived, almost 50 years ago having set up in Northern Ireland some years before, and Scotland decades before that. Watching the celebrations of Camphill’s 50 years at Mourne Grange in Northern Ireland it was telling to listen to the memories of people in this still thriving community — one community member recalled — “We had no meetings, nor groups for this or that, we just lit a fire and got together” and, when Christmas came, “the angels came down the stairs”.

This is the way of Camphill. People co-created communities where everyone, with and without Id was considered as having something valuable to contribute and to teach. Camphill offered a new vision that radically challenged the perception of people with disabilities as being ‘other’. The desire was to create homes and communities which provided an educational environment where economic, social and spiritual lives are complementary. The values that Camphill communities lived out each day are ones that our society is only catching up with now. For our family members, many of whom are now getting older, Camphill provided gold, in a dark world. They could now live their own lives, share in work and friendship with others, with and without disabilities in sustainable, enriching environments. Our family members found somewhere where they truly belonged.

Life in Camphill is enriched with a strong and vibrant arts and culture ethos with very successful ventures in music, theatre and art. This has thrived over the decades alongside other enterprises in farming (Camphill were the first social farmers), food production, bakeries, shops and cafes.

Camphill expressly seeks to be a seed of social renewal and has always sought to evolve alongside and ahead of society to promote the inclusion of persons with disabilities.

While Camphill thrives all over the world, finding new approaches to creating inclusive, supportive environments in which to live, it is struggling to survive in what seems like a hostile environment in Ireland, as the unimaginative response by state bodies to regulation is to re-institutionalise care. It is inspiring to see Camphill Scotland pilot new approaches at the request of their government departments. It is equally uplifting, if a little bittersweet, to see communities thrive in Northern Ireland. We see seeds of renewal here too with old Camphillers, such as the legendary Patrick Lydon, pioneering 21st century approaches to supporting people. His Inclusive Neighbourhoods project in Callan Co Kilkenny is increasingly recognised as the way we need to think about how we all live with one another in the coming decades.

We have to move away from the binary approaches of institutionalised, contract medical care, versus isolating people without networks of support and friendships in atomised neighbourhoods in the name of independence. We must begin by understanding and fulfilling core needs – how do we go about creating environments that allow relationships to flourish, where lasting connections between people can form, so community happens naturally? There is nothing more crippling that loneliness and not belonging. This is what Camphill has always uniquely understood. The tragedy of the corporatisation of care is that, almost without noticing, the concept of relationship disappears along with parity of esteem. The everyday of friendship — going out, holidaying or visiting friends in hospital, has suddenly vanished.

The benefits of the reciprocal model where friendship, belonging and community are at its core, should always be supported to grow and develop. The values cherished in Camphill such as inclusive neighbourhoods should be fundamental principles in supporting people. It is to our utter shame that our communities are being slowly and systematically undermined by the regressive move to a medical model of service provision.

Camphill is lucky enough to continue to have wonderful communities with wonderful staff but they are being undermined by powers completely outside the control of community members, their care-workers and their families. We want to be supported to save something that is very precious to many people. Our family members formed very productive, rewarding lives, and were lucky to do so at a very bleak time in Ireland. These are their homes. This is where they have been valued and formed life-long friendships (at home and abroad). These fundamental values seem to have no place in medical models of care.

We have no right to take these homes away (2 of our communities have been de-registered and another two have until January to address issues raised by HIQA). Governments and the HSE are obliged to secure the quality of life our family members have had over decades. They should not have to live with the oppression of institutional over-reach where the most precious and dear things are lost. This is in no way to question the important work of HIQA.

We are lucky to have a very hard working and committed Minister for Disabilities, Anne Rabbitte – We call on you, Anne, to save our communities and to save what is best of Camphill – and learn from Camphill’s values in developing a new and more compassionate approach to caring for one another. A home is not home if it is drowned in rules and procedures that you have had no part in making or no say in how they are applied. Please, Minister Rabitte, put the idea of home and belonging first when conceiving how a service should be. Please know that Camphill homes, are starved of finance, are controlled by people residents have never met, and who might someday close down their home. Remember a home is not a service, it is not the rules and the “meetings about this and that... it is the coming together around the fire” . As Cormac Russell from Nurture Development says “there is no programme and there is no service for loneliness”.

If we truly value our fellow citizens we would ask them, and we would ask their families — what can we do to ensure people live their best lives?. We would ask ourselves how are our actions impacting on the most precious things that people have. 

Camphill has experienced many challenges in recent years – most recently the de-registration of Duffcarrig. Those who suffer most profoundly when something like this happens are people with the least say, people with intellectual disabilities. Those responsible, don’t suffer. This is clearly wrong. We see examples time and time again where people with disabilities are discriminated against in the system – most recently in funding in higher education. This discrimination exists right across the board — people living in Camphill Communities receive funding far below those in other services. How is this fair?

This has to stop. We must live up to our obligations enshrined in our law and UN charters. We must support people with intellectual disabilities to live, as is their right, as full citizens. We ask our government to live up their responsibility to protect the homes and lives of our family members and to support structures that ensure that happens.

We call for an inquiry into the deregistration of the communities of Ballytobin and Duffcarrig from the Camphill family. Our family members deserve an explanation as to why the careless mis-handling of something very positive in Irish society has jeopardised their quality of life. We need to right the wrongs and lessons must be learned.

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