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Acknowledgements Summary

Foreword Introduction

1. Is spirituality important? 2. Supporting the whole person 3. Barriers to a full religious

or spiritual life

4. Towards a framework for policy and practice Conclusion

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Spiritual beliefs and

aspirations of people with

learning disabilities

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Researched and published in association with Caritas Westminster by Lemos&Crane

Lemos&Crane has researched high profile social issues since 1994 including homelessness; social housing management; people with learning disabilities; prisoners and ex-offenders; literacy; hate crimes; and financial inclusion.

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‘I worked in a Mencap Home, supporting ten people with a learning disability. I felt it was not right to talk about my faith to them. But, I came into work on a Sunday afternoon, and one of the ladies asked me what I had been doing. I said, I had been to church, and she said she would like to go. I said I would take her on my next Sunday off, and she enjoyed the experience. She then went round to all her other house mates, and told them about it. Within about a month, I was taking seven of our residents to my church; they had all asked me if they could come.

Taking our residents to church, on my days off, caused some problems with the manager and staff, none of whom had a faith. Over the next few months, I took our residents to three other churches, and helped them to settle in with the congregations. None of them continued to go to my church. This caused further problems down the line, as some of our residents needed support to go out in the community, and it was then down to the non- church going staff to support them as well.

That was fifteen years ago, and six of the residents continued to go to church. Part of church fellowship is the tea and cakes after, and I believe it is one of the safer places for our service users to make friends, outside of the normal day service environment.’

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Acknowledgements

My biggest thanks to all the people who spent so much time being interviewed and participating in focus groups who are, of course, anonymous in this paper. My great thanks also to John Coleby of Caritas Westminster/ St. Joseph’s Pastoral Centre, for his whole-hearted support for the project. Thanks also to Berni McGlew for her support. I’m grateful to Sarah Frankenburg and Sandy Chidley at Lemos&Crane for their work on the project.

Many people helped and advised us with the project, by conducting interviews, attending meetings, facilitating focus groups and in numerous other ways. I cannot express my gratitude to everyone individually here but I would particularly like to thank Kemi Bamgbose (Livability), Belinda Blank (Tree House School), Mark Burgess (Heart n Soul), Leanne Dillon (Community Integrated Care), Phil Edmunds (Grange Centre), Cherry Franklin (Heart n Soul), Cristina Gangemi (Kairos Forum), Sue Grant (KeyRing), Danielle Harris (Sanctuary Housing), Nick Quanrud (L’Arche), Jo Richler (The Judith Trust), Chris Stringer (Salvation Army), Gail Williams (St Joseph’s Pastoral Centre), Eliana Zur-Szpiro (The Judith Trust).

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Summary

This paper, and the research on which it is based, has its genesis in two previous strands of Lemos&Crane’s work. In 2012 we published a research report, Loneliness and Cruelty: People with learning disabilities and their experience of harassment, abuse and related crime in the community. This highlighted the ways and the extent to which loneliness made adults with learning disabilities living in the community more vulnerable to cruelty and exploitation. To prevent these experiences therefore requires organisations in the community – including faith communities - to involve people with learning disabilities so that they feel they are part of the community.

Lemos&Crane has also researched the spiritual beliefs and practices of other groups of vulnerable adults. In 2013 we published Lost and Found: Faith and spirituality in the lives of homeless people; followed by Belief and Belonging: The spiritual and pastoral role of Catholic chaplains for Catholic prisoners, published in 2016.

There has been some previous research into the spirituality of people with learning disabilities that has drawn attention to the importance of spirituality in many people’s lives and the need for support and social care agencies to do more to enable people to express and share their beliefs, as well as practice them and participate in faith communities if they want to.

For this research 57 interviews were conducted with people with learning disabilities, their parents and family members and staff who work in support settings. These are extensively quoted in this paper.

Is spirituality important?

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As well as spiritual beliefs, religious practices were also important for many respondents, including attending churches or synagogues, meeting other people of like mind, visiting religious places and celebrating religious festivals. Religious beliefs and practice can also enhance people’s feelings of fulfilment with their lives as well as being a source of consolation in times of trouble or upset. There may be communication difficulties of course for some people with learning disabilities. These issues should not however be seen as a bar either to spiritual belief or participation. Many people with learning disabilities expressed a desire to know more and learn about spirituality and religion.

One of the most important ways of expressing and sharing religious beliefs is through observing rites of passage over the life course, for example welcoming and naming new-born babies, transitions to adulthood, weddings and funerals. Participating in these rites of passage, both for themselves and for their nearest and dearest is an important need for people with learning disabilities. Though they may be excluded from these experiences by a misplaced urge to protect their feelings from pain and loss, it is a significant form of exclusion from some of life’s most important experiences.

People with learning disabilities also saw religious teaching as a form of moral guidance in the world. They also valued the feelings of fellowship and sharing that were to be gained from being part of faith communities. Religion was also seen by many as an important and inextricable part of their family life and a bond they shared with the rest of their family. Faith communities are also an important wellspring for friends and friendship, particularly friendship in times when consolation is needed.

Supporting the whole person

Many respondents, whether family members, support staff or service users themselves, felt that support staff had an obligation to help people meet their aspirations for spiritual belief and participation, regardless of the views of the support staff about religion or spirituality. This was seen as part of people’s right to choice and independence. Religious education was also an important need.

Barriers to a full religious or spiritual life

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practice, including inappropriate efforts to influence the beliefs or behaviour of an individual by a staff or family member – either to proselytise for certain religious beliefs or to be aggressively intolerant of religious beliefs. The risk management frameworks within professional organisations will need to take account of and mitigate against these risks.

Towards a framework for good practice

A framework for good practice on working with people with learning disabilities and spiritualiy would include:

1. A policy framework that recognises the potential benefits of spirituality to enrich the lives of people with learning disabilities. These include:

• meditation, mindfulness and prayer

• moral guidance, charity and giving

• strengthening identity, belonging and community

• fostering a sense of beauty and self-transcendence

• meaning and fulfilment

• consolation in times of loss.

2. Equality policies and practices that recognise the benefits of valuing and celebrating religious diversity as well as preventing discrimination on grounds of religion.

3. Training, supervision, peer support and discussion groups for staff who feel unsure about handling issues of spirituality and religious belief.

4. Accurate record-keeping and information on religious identities and spiritual needs of service users.

5. Person-centred and support planning methodologies that recognise the importance of spirituality and religious beliefs and practices of service users.

6. Risk assessment and management methodologies that recognise the risks of proselytising or exerting unwanted or over-weaning influence, without simply debarring all discussion of religious and spiritual matters as a ‘can of worms’ or ‘too hot to handle.’

7. Good knowledge of and strong links with faith communities in the locality of the service.

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9. Attendance at religious worship and faith communities with a sympathetic supporter if necessary.

10. Religious education and instruction as well as discussion groups for services users who are interested.

11. Opportunities and peaceful places for private prayer, shared prayer and meditation.

12. Welcoming and encouraging the presence of religious objects which are meaningful to individual service users in their private spaces.

Conclusion

This paper and the research upon which it is based does not seek to make the case for a particular religious faith, theology or doctrine. The case made is rather more simple: that being or feeling religious is perceived by many people with learning disabilities, as well as their families and support staff as a beneficial source of personal and emotional sustenance by the strengthening of individual belief and identity and the full participation in community life. There is more that support staff could and should do to facilitate that participation.

Faith communities, to be true to their values of hospitality and tolerance, will want to remove barriers of prejudice or intolerance without diluting their doctrine or practice, both individually and in community.

The argument here is not just that spirituality is felt by some people to be a good thing for them, but that, in addition, participating in religious practice, doctrine and fellowship is for some people an essential

element of a full spiritual life.

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Foreword

by John Coleby, Director, Caritas Westminster/St.Joseph's Pastoral Centre.

My first encounter with people with learning disabilities and their families was to undertake a level 2 complaints investigation for a London borough. I was one of a plethora of officials and others who had interviewed the family over many years. The family’s warmth and commitment but also their determination in the struggle to get the best for their child deeply impressed me.

Many years later when I arrived at St Joseph’s Pastoral Centre I began to understand fully the struggle that people with learning disabilities have to undertake simply to get their voice heard and their needs acknowledged and met. In my view, this is no more evident than in the area of spirituality, religious expression and worship, which for a number of reasons are taboo for many practitioners.

I am delighted that Caritas Westminster has been able to support this research by Lemos&Crane. I am grateful for the diligence and sensitivity with which the research team approached the subject. The findings clearly demonstrate that such concepts and their concrete expression are valued by people with learning disabilities. Where people with learning disabilities are encouraged to express themselves in these ways they build resilience and confidence by offering opportunities for friendship and communal experience. As a result people with learning disabilities, have a voice and feel included but more importantly they experience belonging. To experience belonging consolidates self- esteem and facilitates the ability to contribute to the wider community.

First and foremost this research and the follow-up practice guidance is based on the reflections of people with learning disabilities and only secondly the reflections and suggestions of some practitioners. The contribution of people with learning disabilities in this research gives voice to their needs and requirements in the area of spirituality and beliefs. St Paul in his letters, speaks about the interdependence

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Introduction

In 2012 Lemos&Crane published Loneliness and Cruelty: People with learning disabilities and their experience of harassment, abuse and related crime in the community. This research report explored the daily lives of adults with learning disabilities who live in the community and found that an overwhelming majority – 93 per cent of those interviewed – had experienced some form of targeted harassment, abuse or cruelty. This was a disturbing insight into the day-to-day lives of people with a learning disability, which were too often characterised by loneliness, social isolation and cruelty. Many of those who lived partially or wholly independently in the community had few friends, and some of their so-called friends were neither reliable nor loyal. They also enjoyed few opportunities to pursue hobbies and interests or engage in community life. Employment opportunities were also few and far between.

Loneliness, isolation and lack of social or community involvement contributed to their vulnerability to abuse, exploitation and cruelty, as well as meaning little support was available when such incidents occurred. The nature of cruelty that people experienced was varied, on a wide spectrum from ‘low-level’ name calling to more extreme violence and even sexual exploitation. Financial exploitation was a common occurrence. This was often, though by no means always, associated with sexual exploitation.

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In thinking about the possibilities for greater community involvement and its benefits in combatting isolation, questions of affordability are clearly important. Very few people with learning disabilities have much money and, whether they have a little money or a lot, they rarely have full control over how it is spent. So such opportunities for leisure and fraternity that can be availed need to be in financial as well as within practical and geographical reach. The welcome that people would be offered is another important consideration. An intolerant or hostile reaction would only elevate loneliness and isolation into the even more dispiriting and soul-destroying experience of fear and anxiety. One might conceptualise the principle benefits of combating isolation as the diminution of fearfulness and the enhancement, even in a small way, of fearlessness.

So where are the spaces and places where fearlessness may flow from the heartening benefits of tolerance and community? The UK enjoys a huge and growing network of activities and places engaged in the creative arts. Many of these activities and venues are in part or wholly free. In addition, there has been a longstanding commitment to access and participation in the arts for excluded groups, including people with disabilities. While clearly a good deal more needs to be done to facilitate access and participation particularly for adults with learning disabilities, there is clearly an opportunity in the arts for greater enhancement of self-expression, personal and shared well-being and collaborative creative activity in which friendship across boundaries of intellect or society may flower. Lemos&Crane published a paper in 2014 about improving access and participation for adults with learning disabilities in London arts organisations and venues (Re-Imagine: Improving access to the arts, museums and galleries for people with learning disabilities) which seems to have received positive reactions. This document elicited enthusiasm for new projects from major arts organisations in London, including the London Symphony Orchestra, V&A Museum, Tate and the National Gallery, with whom Lemos&Crane have subsequently partnered.

Another area of voluntary and community life which is expanding rapidly is projects that encourage people’s involvement with nature, not only from the perspective of enhancing awareness and practice of environmental sustainability, but also with a view to increasing well-being and building physical and social resilience among participants, including groups of vulnerable adults (such as homeless people, those with mental health problems, refugees and asylum seekers) as well as adults with learning disabilities. These projects have grown far beyond their origin of voluntary effort to reclaim waste ground or establish community gardens. Some activities built on engagement with nature speak directly to more profound questions of identity, self-expression and community through, for example, using foraged herbs to make personalised cosmetics, or using plants such as bamboo to make musical instruments, or foraging and growing foods for communal meals and celebrations.

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only in the number and variety of community environmental projects across London boroughs, but also in the number of people involved with them. This includes in many cases adults with learning disabilities, who may be spontaneous and self-motivated participants in wider community projects or may become involved in nature-focused projects specifically for people with learning disabilities.

In faith communities, one might similarly expect that with frequently stated values of openness and hospitality in many mainstream religions, there would be a warm welcome for people of all sorts, especially the vulnerable or the needy. Our interests and aspirations for inclusion in faith communities have not been confined to people with learning disabilities. Lemos&Crane has also published two other studies. The first was concerned with the religious and spiritual beliefs of homeless and ex-homeless people, Lost and Found: Faith and spirituality in the lives of homeless people (2013). Written by an atheist, Carwyn Gravell, this research report pointed to the many ‘fruits of faith’ for vulnerable people, such as homeless people. The author also noted that a secular orthodoxy prevailed in support services. This meant that the spiritual beliefs and practices of service users were rarely discussed, formed little part of support planning or delivery and did not feature even in the background of options for resettlement. Similarly, the religious beliefs and practices of staff were rarely discussed and were, in the case of many organisations, simply taboo on considered and ill-founded grounds of perceived risks. In other words there was, not to put too fine a point on it, a culture of silence surrounding religion in services for homeless people. This is all the more ironic when one notes that the heritage and origins of many service-providing organisations are religious. Religion continues to form a substantial part of why they exist, but not of what they do, both in general and in relation to specific individuals.

Lemos&Crane has also, with the support of the Catholic Bishops’ Conference of England and Wales, inquired into the spiritual beliefs and practices of Catholic prisoners and their relationships with Catholic chaplains. The report of this work is Belief and Belonging: The spiritual and pastoral role of Catholic chaplains for Catholic prisoners (2015). An important lesson we drew from the inquiry with prisoners was that religious practices mattered as well as spiritual beliefs. In this research we uncovered a deep and abiding faith among Catholic prisoners who had been brought up in the faith. They placed a primary significance on attending mass; most engaged in private prayer and many prayed with others. A very large majority kept religious objects in their cells as aids to worship or for protection for themselves and their families. A similarly large group placed great value on their relationship with the chaplain, both for spiritual guidance and practical support.

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in which a single human life (their own) plays an infinitesimally small part. All could reasonably be argued to be spiritual beliefs. Similarly people of different faiths and within individual faith communities would take different views of the meaning of prayer. Some would argue that prayer should be communal, as well as private, or that it should follow forms and rituals that represent religious beliefs and traditions, and should be more than a ‘conversation’ with God, or a quietist meditation. It was clear for many Catholic prisoners, recognising their vulnerable and powerless circumstances, that participation in ritual, possession of religious objects, group worship and religious education were all part of what they sought from religion. A simple (though of course it is not always simple) expression of a personal credo without reference to tradition, ritual, community or doctrine would not be enough for many prisoners.

A guiding light in the exploration of the spirituality of vulnerable and disabled people has been the work of Professor John Swinton and his colleagues at the University of Aberdeen. In 2001 the Foundation for People with Learning Disabilities published its Space to Listen report, which was based on a 10-year review of the literature on spirituality and people with learning disabilities, combined with a series of interviews with people with learning disabilities, carers and support workers. The report found that spirituality is a common human phenomenon that includes but is not defined by religion. There is evidence to suggest that spirituality plays a significant role in the lives of many people with learning disabilities. Carers and support workers are often unaware of the significance of this dimension and consequently fail to address it. Training is required to enable those supporting people with learning disabilities to recognise and deal effectively with this aspect of their experiences. People with learning disabilities need to be given accessible information and opportunities in order that they can make informed spiritual choices. Faith communities have the potential to offer support and friendship, but they need to be aware that certain exclusive forms of practice can serve to exclude and oppress people with learning disabilities.

There are several reasons why the concerns highlighted in this research may have come about. Staff may show a general unwillingness

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may be thought to offer a pathway to a ‘cure’ or a miracle. Religious traditions have also been home to arcane superstitions about people with learning disabilities, that they had miraculous or healing powers or their presence in a family is form of divine retribution or a curse from someone of ill will and malign powers towards that family. These superstitions and prejudices are not of course confined to religious beliefs. Literature is full of ‘idiot savants’, such as in Joseph Conrad’s

The Secret Agent. In his book about autism, An Anthropologist on Mars, the neurologist and author Oliver Sacks has written eloquently about anthropological tropes being applied to people with learning disabilities some of which are not just erroneous but profoundly stigmatising and can lead to, and seem to justify, intolerance and cruelty.

This paper is based on 57 interviews conducted by practitioners with individuals with learning disabilities, professional and family carers, parents and others who work with people with learning disabilities. The interviews were conducted by support staff and other professionals working in the agencies listed in the acknowledgements. I have not sought to analyse these interviews quantitatively. My intention is to explore the views of people themselves, their parents and family members, as well as those who support and look after them. The report considers the responses thematically. The interviews were not confined to people of a particular faith as the quotes will illustrate. Lemos&Crane is also not a religious organisation. This project has been supported by Caritas Westminster, the Catholic Diocese of Westminster’s social action agency.

Structure of the paper

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Is spirituality important?

Statements of belief

This section reflects the comments that respondents made about their religious or spiritual beliefs and their significance to them. This person made a simple, clear statement that is hard to misunderstand:

“Spirituality to me means believing in God.”

While abstract concepts, such as spirituality, may not be readily understood by some people with learning disabilities (or indeed other people), that is not necessarily a barrier to religious belief or practice, as this quote illustrates:

“I don’t know the word spirituality, but my mum helped me with this. I know Jesus is my friend, and I say my prayers and read my Bible and go to church. I like singing.”

The hybrid character of some people’s beliefs makes them no less heartfelt, as with this person who had a more personal interpretation of spirituality:

“I do have a spirituality but it’s a secret one. What it is exactly I don’t know. When I went to America I met an American Indian chief. He gave me a Cherokee name. It is ‘Great Eagle’. So I was given that name, it’s quite an honour and is part of my belief.”

This respondent is assertive about their religious beliefs and its benefits, which include feeling part of a community, a sense of ceremony and celebration and a strong connection to friends and family through religious belief and shared worship and participation.

“I am a young adult and enjoy work, college, going on holiday with my family and going to The Salvation Army (my church)….I became a member of The Salvation Army (senior soldier). I wear Salvation Army uniform when I go to church on Sundays. It helps me feel like I belong and shows I am a

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Christian. I had my enrolment ceremony. It was a special day. My friends and family were there to support me. My mum made a special cake.”

For another person, understanding was important, but so was shared religious observance:

“I believe in understanding my Christianity and knowing about it. Every year I go to the remembrance service; the service is in town every November.”

This parent has no doubt that their daughter, who is a young adult with a learning disability has her own Christian beliefs:

“My daughter has a definite experience of Jesus in her life commensurate with her capacity to experience faith and understand it.”

As well as beliefs and convictions mentioned by the parent above, another parent commented on the benefits that faith might bring their child, which are both religious and temporal:

“Benefits of exploring faith lead to inner peace, joy, a sense of belonging and inclusion, as well as leading to a personal relationship with Jesus Christ.”

This parent comments not only on the strength of her daughter’s religious conviction, but also that it has an impact on others, presumably in strengthening their religious convictions.

“I think my daughter can be quite forthright at times about her beliefs and attendance at church and this has impacted those around her.”

The benefits of inclusion and involvement in family and community life that religious observance can bring are stressed by this respondent:

“[It] can lead to an increased awareness of each other’s needs and difficulties, and also to improved familial relationships. You can make friends, feel part of a community, and it can improve your mental and physical health from such sustained and positive social interaction.”

Beliefs in practice

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“I currently enjoy going and taking part at my local church. I would like to go to church more regularly on Sundays. I really enjoy going to church and meeting people.”

Religious buildings can imbue a sense of peace and go so far as to contribute to someone’s imagined perfect day:

“A perfect day for me includes being with people and going out for the day. I especially like Buckfast Abbey because it’s a lovely spiritual place; a peaceful place where I can relax. I am currently very happy in my own home, as opposed to being residential.”

As well as regular, private or shared worship other opportunities for religious practice arise on religious festivals. This parent is concerned that her son has difficulty with understanding complex religious concepts, but nevertheless has an awareness of religious traditions and festivals:

“I feel he does not understand. He knows Christmas and Easter and the symbolism of what they stand for.”

Meaning, mystery and fulfilment

Understanding why the world is as it is represents a challenge for everybody. In truth, no one can claim to understand or explain everything that happens by relying only on rationality. They may believe, if they are subscribers to scientific rationalism, that everything has a rational explanation even if they don’t know what it is and neither does anyone else. Scientific rationalism is, however, itself some kind of act of faith since it is inherently impossible to predict or verify future scientific discoveries. We can to some extent know what we don’t know. But we cannot know, if we ever will, something currently unknown. Also, even if something is understood by others, we cannot know whether we will find an explanation satisfactorily comprehensive or comprehensible to ourselves individually.

Religious groups of all stripes rely on prophets, sages and priests to help to understand and explain things that seem unknowable or incomprehensible. Few ministers of religion, however, would claim they can explain everything. Even prophets can pass on only what they believe God has told them, with no pretensions to its completeness. Priests and pastors can communicate what they know or believe and encourage a humble acceptance of things which seem mysterious and even more so things that seem infinite. In one of Tolstoy’s later essays,

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is inexplicable is so, not because my thinking powers are wrong (they are not wrong, and without them there is no understanding at all), but because I can see the limits of my intellect. I want to understand in such a way that any inexplicable proposition is an absolute necessity determined by reason, rather than a requirement of belief.”

The believers may not accept the explanations of religious ministers and may in extremis come to suspect some of them of impure or selfish motives. Far from undermining faith, scepticism about other human beings, however learned or gifted with revealed truth they are, is likely to reinforce an underlying faith even if it engenders doubts about individuals and the religious institutions they are members of. In A Little History of Religion, Richard Holloway (the former Bishop of Edinburgh who admitted to having lost his faith when he retired) noted the way in which scepticism can reinforce faith. This is very important: “Certainty is not faith. It is the opposite of faith. If you are certain of something you don’t need to believe it. You know it. I don’t believe 2+2=4. I know it. I am certain of it. I can do it on my fingers. But I can’t be certain life has an overarching meaning and the world has a creator who loves it. Or that I will go on to another life after death. None of this can be known for certain. We either believe or we don’t believe it. We have faith. Or we don’t have faith.”

People with learning disabilities will, in common with everyone else but perhaps to a greater degree, find that life holds many mysteries which they can neither understand nor explain. Like many others they may turn to religion, if not to explain those beliefs but to validate them. St Thomas Aquinas gave as one of his proofs of God’s existence the beauty and harmony of nature and that is a belief that many subscribe to whether or not they ever enter a church or other place of worship. They have a ‘natural piety’. This search for meaning and fulfilment, which is often expressed through religious inquiry, will also be important to some people with learning disabilities as this member of support staff notes:

“It could also help to meet their spiritual needs, give them a feeling of fulfilment in something they believe in.”

Meaning is also perhaps more acutely sought out in difficult times. We seem to have a human instinct to accept the good things that happen to us as our unquestioned entitlements (hence the proverbial enjoinder with religious roots to count your blessings), while thinking bad things that happen to us somehow need explanation. This instinct is easily understood as a way of coping with emotional pain as this member of staff eloquently comments:

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Similar views about ‘comfort in difficult times’ are expressed from a Christian perspective by another respondent:

“I’m a Christian with many years of supporting people with a learning disability. We are made up of body, mind and spirit. I believe it is crucial to acknowledge someone’s spirituality. It can bring immense comfort in difficult times and bring a value to life that everyone has a right to know. I have supported many people with their faith such as through attending church, house groups, social gatherings and holidays.”

Overcoming communication barriers

Some people with learning disabilities of course have difficulties with conventional forms of communication. Here a parent explains that despite restricted communication their daughter not only has religious experiences but can convey them. In fact, she seems to have surprised both her teachers and her parents with the strength of her memory notwithstanding her cognitive or communication limitations:

“She explains her experience in simple terms often using music and videos to explain what she may feel. She may become emotional or tell us that she feels funny inside. She may even give a brief out line of a dream. She may see something that evokes a sense of spirituality. She once saw a girl sitting in the playground and when she told the teacher the child’s name it was found that the girl had died many years before.”

Making up their own mind

One of the specific concerns that has led to this research is that there are people who have not had the opportunity for religious experiences through family, community or education, and feel the lack of it. They have a commitment to prayer and a clear belief in God and they are looking for support in addressing religious issues in their life. This person has not been influenced by their parents’ religious belief, but is interested in religion and wants to learn more:

“I don’t know if my parents have a faith or religion. I don’t think I went to religious places or events when I was growing up. These days I don’t go to church. Sometimes I talk about religious beliefs with people. I would like to know more about religion please. I pray all the time. It makes me feel strong and good. I pray to God about all different things.”

The opportunity to discuss questions of spirituality is important for educational purposes and helping people to make sense of a sometimes mysterious world, a point underscored

by this parent:

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Desire to know more

As well as statements of personal belief already noted, people expressed a strong desire to know more about religious belief and worship. For these people it is part of how they see themselves; and the world they live in:

“... I would like to learn more about God. I’m not sure what my beliefs mean to me.”

Another person is looking for more formal religious instruction:

“I learn a lot at church at a Bible study group but I’d like to do more workshops around spirituality.”

Sometimes, there is a sense of missing out, both in not talking about spirituality or going to church, as expressed by this respondent:

“I don’t go to any religious places at the moment. It might be quite nice to though. I don’t really ever talk about spirituality or religion with anyone.”

This parent feels they know that their child (who is a young adult) has an interest in religious participation:

“A desire to go to church. Chooses to listen to Christian music.”

Transitions and rites of passage

All cultural traditions have rites of passage through the life cycle, recognising birth, adulthood, marriage and death. And all the main religious traditions have rituals and ceremonies to be shared in community for these rites of passage. They represent the community’s recognition that an individual has moved on to a new state in their life. An old clock has stopped, say of childhood, and a new clock has started, say of married life – or as W.H. Auden noted in his famous poem about the death of a loved one, all the clocks have stopped at death. The meaning of your own death or the death of a loved one is for many people the hardest thing to make sense of. It is therefore a central part of the beliefs and teachings of all religious traditions and their prophets, who, unlike ordinary mortals, have seen beyond death with God’s help and feel the obligation to report back to those devoid of that revelation.

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even among those who do not subscribe to a religious faith has led to an enormous growth of funerals celebrated by humanists. It seems that people of no religious belief are nevertheless reluctant for the dead to pass out of their lives as if nothing has happened.

For people with learning disabilities rites of passage are at least as important as they are for everybody else, but they may have an added significance. Since they are not essentially intellectual processes, relying for their power on ritual, shared experience and tradition, they are readily understood regardless of cognitive limitation. They are also important reinforcement of universal humanity from which of course people with learning disabilities must not be excluded. Perhaps most importantly of all for people with learning disabilities, they are emotional coping mechanisms which do not wholly rely on intellectual or rational comprehension. A wedding is a celebration; a funeral is a mourning of loss – everyone can understand those messages, both literally and symbolically. This person comments on how much they enjoy weddings, especially as an opportunity to celebrate with family:

“I have celebrated with family at weddings, but I am not married. I hope to meet the right person one day.”

The consequence of being excluded from these rituals is acutely felt in personal emotional pain as well as social exclusion. Although we do not know why this person was excluded from their friend’s wedding, the exclusion was felt painfully:

” I wasn’t able to celebrate my friend’s wedding which made me a bit sad and I felt shut out.”

A parent comments here with enthusiasm on their son’s experience of his Bar Mitzvah, the Jewish celebration of transition to adulthood:

“Yes he had a Bar Mitzvah..[The experience was] amazing! Particularly for the family. He enjoyed the occasion very much and it was the first time he was able to be equal to his peers.”

One has to ask, if people with learning disabilities are excluded from these rituals, how then do they cope with, say, bereavement? What do they think has happened? Where do they think the dead have gone? Will they ever be seen again? How do they come to terms with what has happened? And how in due course do they move on from what has happened? This member of staff talked about the importance of supporting people with learning disabilities through bereavement:

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towards others and a sense of something bigger than themselves seem to all contribute towards a potentially enriched and loving space to return to in times of need, but also in times of contentment.”

This person had a boyfriend who had died. Participating in the cremation was clearly of high emotional significance for her. It was an opportunity for her to show her love for the one she has lost – and for others to validate the importance of that love:

“I used to spend time with my boyfriend, we were together for over 20 years but he died last year. His ashes were scattered on the grounds of his favourite football club, so I guess that is a special place that is important to me but I don’t know. Going to the cremation was a special occasion. His sister said I should travel with his family because I was his girlfriend. I read something at the cremation to say how much I loved him. He had a memorial service a few weeks later at his favourite football club and scattered his ashes.”

Charity and moral guidance

All the formal religious traditions, and many informal ones too, aspire to offering their believers moral guidance. They do not deny that humans can do bad things to one another, or that bad things may happen seemingly randomly, but they question whether ideas of human justice could ever be enough to make recompense. There may be within their teaching some explanation for human weakness, but there will certainly be a need to show that God disapproves and may punish a miscreant until an individual expresses remorse and seeks forgiveness. As well as sanctions against bad behaviour, religious doctrine also seeks to encourage and spread good behaviour in concepts such as mercy and charity. This person feels that religious belief enhances her life and enjoins her to help others:

“My beliefs make me feel free; they mean I should help other people.”

Fellowship and sharing in communities of interest

Being with others who share her beliefs is valued by this person who is reluctant to impose her religious views on others:

“I don’t like to force my ideas on other people, so I talk about spirituality and religion at church and Bible studies.”

Participating in religious community life is seen by this parent as an element in a wider sense of social inclusion for her son:

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As well as the benefits of community, this parent also points to the fact that religious observance brings their adult relative a sense of inner peace:

“Affirming, provides a community he feels part of - like a wider family. Acceptance, encouragement and friendship. Degree of inner peace.”

Family

For most people the religious traditions that imbue their family life and their imagined world in childhood are the foundation stones on which religious belief (or its conscious rejection) has been built. This is not to say that children slavishly follow without question their parents opinions or attitudes. Contemporary modern societies lay far too much emphasis on individual choices for that (even for disempowered groups such as people with learning disabilities). Adolescent rebellion has become almost a rite of passage in itself, at least in western societies. But the choices that people make are not made in a vacuum. There is a given starting point and that is the family, the community and the cultural tradition of which the family is part, to which the family contributes and from which it draws sustenance. So it is no wonder that family beliefs are an enormous influence on people with learning difficulties, in relation to religion and much else besides.

“My parents are religious. We used to go to church at Christmas. I enjoyed it.”

“I have gone to The Salvation Army from birth, so I understand what it means to trust in God. My faith is very important to me. My family attend The Salvation Army and when I was born I was dedicated (christened) back to God. I went to Sunday school. I enjoyed it and I made lots of friends. I still go to The Salvation Army on Sundays, and sometimes on other days if there is something special on, and I sing in a singing group.”

Concerns are expressed by this member of staff that people with learning disabilities are having the views of others, particularly the family, forced on them by the family and they are not being allowed to make a free, individual choice:

“Sometimes families may impose their beliefs onto their adult children; they may wish to have no faith or explore another one. Professional advice might need to be sought, as well as a consultation with the family; however, the final say is the individual’s.”

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auto-suggestion from other family members. While this may not always be harmful per se and may be borne out of a protective instinct, it is undoubtedly an unwanted restriction on an individual’s right to live the life they choose. Professionals (such as support workers and social workers and, in the event of more serious concerns, safeguarding arrangements) are there to respond to, and deal with these kind of privations. Even if individual choice is to be validated, however, the cultural and community aspects of religion have also to be taken into account. For many people of different faiths the idea that religious belief is simply a matter of individual choice would be anathema. They would take the view that people in any community or society should be given the opportunity to participate fully in the life of that community, including in its religious beliefs, practices and traditions. There are many people who would subscribe to a religious identity as a matter of culture or heritage without subscribing to all, or even any, of that religion’s tenets of faith. So, participation in religious worship and life is of course a matter of individual choice, but that choice may reflect choices about tradition, culture or community as well as personal convictions or experiences. It all counts in people (whether or not they have learning disabilities) feeling they are a whole person with a unique multi-faceted identity who can play a full part in the life of their community or society.

On the other side of the possible dangers of too much unwanted family influence, is the opportunity that religion gives to enhance family life, both by affirming shared beliefs and, through religious worship, creating spaces for shared family experiences, the benefits of which will be felt in attachment to one another and a sense of belonging. This parent makes it clear that her daughter has participated in the religious life of her family but has her own strong commitments to religious belief and practice. It is not simply either a matter of going along with everyone else in the family or not knowing what is really going on:

“My daughter is an individual in her own right, and faith has never been something which has been forced. She has been attending church with us from birth, and has found her own place in our Christian community.”

It would also be wrong, as this staff member notes, for families without religious convictions of their own to deny that the member of their family with a learning disability could nevertheless have developed beliefs and commitments independently. In those circumstances they should be entitled to express and practice those beliefs and not be prevented from doing so by family restrictions:

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Friendship

One of the lasting concerns about adults with learning disabilities living in the community, particularly those who live on their own, is that they are lonely and isolated, with limited interaction with social workers and other paid helpers and few friends or informal contacts with neighbours and local community groups and activities. Indeed that was one of the principle motivations for this research. Within community life one of the places one might expect to see friendly faces and to find people who might share your interests and concerns is in faith communities and places of religious worship. This person comments on the social benefits of participating in religious activity:

“Being around friends and being able to socialise with people and going to church is important to me. My faith is important to me. I like to spend time with my friends at the day service I go to and with my Bible study group.”

This member of support staff also notes the potential social benefits in new friendships, congenial ways to pass the time and having something to look forward to:

“They may become more involved in the community, increase their social network and possibly make new friends. It could also add variety to their day, give them something to look forward to and result in a wider support network.”

Friendship for consolation

Leading a full independent life inevitably means that people are exposed not just to the good things in life, like love and friendship, but they are also vulnerable to life’s disappointments and sorrows. In those circumstances, the presence of friends and the comfort and consolation they can offer is an important aspect of coping with loss or sadness. This person had a boyfriend whom she evidently loved very much but who has died. In those sad circumstances contact and encounters with friends and family are an important source of consolation and represent, to a small degree, some compensation because while her boyfriend was around she did not have much time for friends:

“I was happiest when I went on holiday with my boyfriend; we used to go away regularly together. I was unhappy when my boyfriend died, I don’t like not having friends and family around. Talking to friends can cheer me up though. Friends and family were very supportive. An important experience in my life was getting my own flat. Also my boyfriend dying and being single for the first time in years. It’s good to have time to spend with friends because he liked me to spend all my time with him but I still miss him.”

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Supporting the whole

person

Many respondents, both family members and professional carers, located the question of supporting an individual’s spirituality as part of an obligation to see the whole person and meet their needs without judgment, curtailment or conformity. This could be seen as part of providing holistic and person-centred support. Religious belief and expression may also be regarded as a human right or personal entitlement from which people with learning disabilities should not be debarred on the grounds either of their perceived limitations or unjustified institutional boundaries or prohibitions. These two comments illustrate this person-centred approach:

“Individuals with a learning disability are just as entitled to explore their faith journey as anyone else. If they require support to do so, then it is wholly appropriate that they receive this support and that their aspirations and personal outcomes are promoted and met in this regard. In my experience, for those who have expressed an interest in faith it has been an important element of their support.”

“I’ve never encountered any issues with helping a service user to explore their faith or spirituality and wouldn’t have any anxieties in doing so again, as you could be helping the individual achieve something they wish to do and it could be an important part of their life.”

The many ways in which an individual could express spiritual aspirations and needs with or without the facility of verbal communication are stressed by this respondent:

“A service user may express their spiritual needs by showing us pictures or indicating they want to go to church, by saying a prayer, wanting to discuss it further with supporters or through other behaviour.”

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Also highlighted by another person is the importance of looking for indications of spirituality beyond verbal communication:

“It is possible to find out about a person’s spiritual

inclinations through their work, creativity and relationships etc. In whatever way they choose to spend their time - this may serve as some indication of their spirituality or overriding belief system.”

I have stressed elsewhere in this paper the importance of family as part of people’s religious lives, as an important source of most people’s religious beliefs in the first place and in supporting people’s participation in faith communities. This member of staff saw the family as an important source of information about an individual’s spiritual background and the tradition they came from:

“If they had no information pertaining to their spiritual background I would first discuss the matter with their family members and friends, and then offer them choices involving all religious activities.”

This person stresses that spiritual beliefs and religious participation are not necessarily fixed points, using a metaphor that is often used in discussion of spirituality and religion: that people are on a religious journey, which has many stops and starts, periods of doubt and an ongoing sense of inquiry without certainty. They see the job of support staff as supporting people on that journey, without judging the merits of the beliefs or the process of inquiry:

“I feel my role would be to sit with them and accompany them on their own spiritual journey, rather than impose my own beliefs on to them. I think it involves trusting the individual to carve out their own spiritual path or development and to provide an open hearted and non-judgmental space for them to explore and cultivate this as they wish.”

Another respondent takes a practical approach to overcoming potential barriers and locates both the need and ability to do so within an

organisation’s ethos, management and team working:

“All these issues can be overcome with good management skills and an understanding across the staff team about the need to ensure service user needs and outcomes are central to the support provided.”

Here, a manager highlights the need to be consistent and thorough across the entire range of an organisation’s policies and procedures:

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appropriate. This has not just been for Christians but also for people who follow the Jewish faith, Muslim faith and Hindu faith and others.”

Finally, this person highlights the importance of staff communicating effectively with one another as a means of ensuring that service users are treated in an open and non-judgmental way:

“My only concern would be others’ lack of understanding. What is required is more people talking openly about spirituality and faith - an open dialogue between

professionals - in order to create space for our clients to do the same.”

Religious education

Teaching children with learning disabilities should in theory follow the National Curriculum, including its requirements for religious education. There should therefore be no impediment to a clear approach being taken to religious education, which in the view of this respondent should be made part of the procedures that teachers follow:

“I believe that your child needs to have faith and spirituality explained clearly to them, for parent’s teacher’s to have specific guidelines when the questions are asked.”

This person is keen to ensure that the views of the individual learner have primacy and the religious views and interpretations of teachers should not be imposed about religious texts:

“Most holy teachers have their own thoughts about spiritual text, this will or could vary from teacher to teacher, I want my child to have their own thoughts and feelings about spiritual text.”

A plea for consistency, self-expression and individual belief in religious education of people with learning disabilities is made by this respondent:

“Only that they are taught consistently, that they are able to express their own ideas, their truth and often the only truth, in their eyes.”

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Barriers to a full

religious or spiritual life

Having adumbrated the benefits (potential and actual), the barriers and difficulties should not be ignored. This respondent notes a large potential range of barriers to an individual service user’s ability to practice their faith:

“Of course there are barriers though. Issues can range from availability of staff to the reaction of some people within the worship community. Limited staff levels have at times led to a rationing of support around faith and attendance at worship services. This is particularly the case when you have several different people worshipping at different locations. Staff can also often be reluctant to participate in spiritual activities with service users.”

Practical obstacles as well as personal concerns for the individual are mentioned by this person:

“Not sure. It really depends on a number of factors: how will she get there, who would she sit with, would she be comfortable doing this.”

The barriers that may arise from intellectual conditions, such as autism, and that inclusion may require some adaptation are recognised by this person:

“His awareness is a barrier and his autism. Jewish synagogue services are too noisy and too crowded. Smaller quieter services [would help].”

This person highlights the difficulties of young adults with learning disabilities enjoying the same independence as their peers:

“In the main this is a positive experience. My daughter has enjoyed a sense of belonging, inclusion and acceptance. However, as she has grown into adulthood, inclusion in particular activities can be more difficult. This is particularly

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evident when compared to her peer group who enjoy independence and do not require support from family or friends to attend events or activities.”

An important issue is the extent to which religious practices need to be adapted or amended to meet the needs of individuals with learning disabilities. It would obviously not be right to expect an unequivocal acceptance of all aspects of a particular religious doctrine and set of rituals from everyone. Perhaps many, even most, religious people do not entirely subscribe to every detail in the doctrine of their faith. That is not generally considered required by most mainstream faith communities. On the other hand, being a member of a religious or faith community is generally thought to require more than privately held beliefs that bear no relation to a particular faith’s canon. So the boundaries between individual belief and rituals performed together in groups of people who share belief and a sense of meaning derived from those rituals need to be understood. There will always be a need for flexibility and responding to the needs of an individual, but not everything can be up for grabs in shared worship as this response from someone well-intentioned illustrates:

“I find that the subject is vast - people with learning

disabilities are as different in their abilities as the rest of the human race. Depending on how the worship session was set up, some learning disabled people would need little, if any, modification to attend a place of worship. Other learning disabled people would need huge changes to a worshipping environment in order to be able to participate at all.”

The key here is to ensure that the needs of individuals are understood alongside open and honest communication by family members and support staff with faith groups and their leaders and ministers about the possibilities and limitations of flexibility and adaptation in the forms of religious worship.

Prejudice and intolerance

Religious belief can provoke prejudice and discrimination in others who may see it as strange or eccentric. Some may also adopt a militantly secular or atheistic posture as a matter of personal principle – a principle that in their minds justifies intolerance to others whom they regard as simply wrong and foolish.

“As a child, my daughter was subject to the usual childhood taunting at times at school from an awareness in other children that she went to church and was part of a Christian family.”

Conversely religious believers may be prejudiced or discriminatory against a person with

a learning disability.

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“... there could be certain communication barriers between the service user and the religion they have chosen, and in the worst case there could be discrimination against the service user by attendees of that particular religion. These issues could potentially be avoided by clear communication with religious leaders and attendees of the place of worship.”

Attitudes of faith communities

Earlier in this paper I noted the importance of participating in shared worship for many people. I also noted that most religious traditions would promote and subscribe to invitation, welcome and hospitality as founding principles and practices among believers. But religious people often also see their services and rituals as sanctified and sacrosanct, even though reluctance to adapt a form of worship may be excluding and therefore run counter to their own stated values.

“I haven’t personally experienced any barriers, but I know we have had problems with a priest refusing to include people with learning disabilities in the life of ‘his’ parish. Silence, obedience and the ‘correct behaviour’ seemed more important than to make everyone welcome.”

This individual highlights the importance of preparation and good local knowledge:

“It can also be hard to find groups and services that might be appropriate. Better advertising and sharing of information within communities and local areas is definitely necessary.”

I have already noted the prevalence of prejudice and discrimination against people with learning disabilities going back through history. But less noted and therefore more important is that people with learning disabilities can sometimes bring out the best in the rest of us. They can make the impatient patient, encourage people to listen rather than talk, slow down to a pace that works for everybody, seek to understand someone else in a more than superficial way and reflect before generalising. Parents of children with disabilities often comment that the child was a great gift to them and to their family. This parent extends that observation to their faith community:

“Sometimes I feel my daughter’s presence engenders more openness and acceptance. However there are other times when, because she is an established member, things are said and done which clearly indicate no thought has been given to her presence.”

The beliefs of staff

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and the common practice and aspiration of person-centred planning. Such a view also sits comfortably with

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Contents

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Is spirituality important?

Supporting the whole person

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Towards a framework for good practice

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Conclusion

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Structure of the paper

Statements of belief

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Beliefs in practice

Meaning, mystery and fulfilment

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Overcoming communication barriers

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Transitions and rites of passage

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Charity and moral guidance

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Family

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Friendship for consolation

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Supporting the whole

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Religious education

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Prejudice and intolerance

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Attitudes of faith communities

The beliefs of staff