Rules that restrict friendship between staff and people with disabilities are harmful and irrational.
Paul Williams gave this paper at the online Social Role Valorisation conference on 22nd to 24th February 2023
A note on terminology: My talk is about people for whom the current term in the UK is people with learning disabilities, and that is the term I shall use. You may be more familiar with the terms intellectual disability or developmental disability.
Many of you will have come across two American writers and speakers on issues concerning people with learning disabilities, David Pitonyak and John O’Brien. David wrote a paper called ‘Loneliness is the Only Real Disability’ (Pitonyak, 2003). In it he says:
“Many people who experience our services are profoundly lonely. Much of their suffering results from isolation not disability. When people are connected to a social network, they are generally happier, healthier, and better able to adjust to life’s ups and downs. The benefits of our therapies and interventions cannot be sustained in the absence of meaningful relationships.”
John O’Brien has said that the ultimate success of a service system depends upon its ability to help people to maintain and develop positive, enduring, freely chosen relationships (O’Brien, 1988).
How are we doing in helping people to achieve these relationships?
In 2005 a survey of a large sample of people with learning disabilities in the UK found that 76% had no friends who did not have learning disabilities, 31% had no friends at all, and 19% of the sample had no contact with any family members (National Health Service, 2005). A minimum estimate of the number of people with quite severe learning disabilities requiring substantial service support is 300,000 in the UK and 1.5 million in the USA. Applying the survey results this gives at least 90,000 people without any friends and 60,000 people without any family contact in the UK, and 450,000 without friends and 300,000 without family contact in the US.
So we’re not doing too well.
How can we find friends and experience of family for people who are without them? It is generally agreed that the ideal is to help people have friends or gain family experience outside services. There are many excellent schemes that seek to achieve this, some described at this conference. However, they only scratch the surface. Tens of thousands of people with learning disabilities remain without the experience of friendship and family.
Unfortunately, services are quite often careless about supporting friendship. Take Christmas cards for example. My wife and I have seven people with learning disabilities that we would describe as our quite close friends. Every Christmas we send them Christmas cards. The largest number of them that services have ever helped to send cards to us is three. This Christmas it was two. We once discovered that a service supporting one of these people did not keep any record of their friends, including no record of us. In another case we found they had our names wrong. Only two of our friends are ever helped to ring us up to talk to us or to write a letter to us. Friendship is a low priority in many services.
Let’s look at how people with learning disabilities might themselves approach the question of gaining friends and family experience.
The family advice organisation ‘Love To Know’ has a section on its website called ‘No family, no friends – how to cope being alone’ (Love To Know, 2020). It says:
“Loneliness is wanting to connect but being unable to. If you are lonely you may want to take a proactive approach when it comes to connecting with others. If you don’t have a family, you can create your own by surrounding yourself with healthy and supportive individuals who care about you. Give yourself permission to define what family means to you.”
In my experience, this is exactly what many people with learning difficulties try to do. They try to take a proactive approach in seeking friendship, and they try to create family experience for themselves. They do this in relation to people close to them who care about them. And who are the majority of those people? The staff of services that support them.
This paper will therefore address the question:
Can staff of services be friends and offer family experience to the people they support? Is this encouraged, or actually prevented by service policies and practices?
In my view, friendships that develop naturally between staff and the people they care for and care about should be encouraged and supported. This should also include if possible providing a family experience for people. I believe there is often a natural desire for these relationships, and willingness to pursue them, on both sides. Here are some examples of this in action:
The international care organisation L’Arche says that it is based on “a culture of shared lives between people with and without learning disabilities” (L’Arche, 2021a). There is mutual benefit in such relationships. A member of staff says, after working in L’Arche for a year:
“I got to know the three guys quite well over the course of the year, and it changed my life in ways that I had never expected. I was constantly amazed at how much I was growing through these friendships. I had thought I was coming to this programme to do good and help people but actually it was me who was being cared for. I learned that I can experience meaningful, mutual friendship with people who are different from myself.” (L’Arche, 2021b).
Camphill communities, based on the philosophy of the educationalist Rudolph Steiner, involve life-sharing between people with learning disabilities and the extended families of their supporters. A study of these communities concluded:
“Living in extended families in a long-term social relationship with co-workers and assistants helps generate a sense of community in which they feel part of a readily available, supportive and dependable social structure.” (Randell and Cumella, 2009).
A British study of relationships between social workers and people with learning disabilities found that in many cases there was true friendship and sharing to the great benefit of everyone. The author says:
“The social worker’s task was characterised by informality. It took place within long-term relationships. Many people had their social worker’s home address and telephone number. Many social workers described themselves as friends of the people with whom they worked. Some service users shared this view and came to see their social workers as their friends too.” (Atkinson, 1989).
In all these instances, staff were allowed to develop friendships with the people they supported, with benefits to both parties. In such cases, the staff often continued their involvement with the person outside work hours and in their own time.
It is of course important that such friendships should not detract from or impede efforts to find and support friendships outside services. However, in practice friendship with staff can lead to introduction to the supporter’s own network, increasing the possibility of non-service-based relationships. This can be seen in several of the examples just given.
Wolf Wolfensberger’s first expression of the ideas that became his concept of normalisation and later social role valorisation was in a paper in 1969, over 50 years ago, called The Origin and Nature of Our Institutional Models. In it he outlined how negative perceptions of people led to the segregation and isolation prevalent in the pattern of service provision in the form of large institutions. Those perceptions of people as sick, dangerous, childlike, pitiable or subhuman have largely been replaced with the demise of the institutional model. However, do we still have negative perceptions that underlie current practice in community settings?
I think we do. There are still very prevalent perceptions of people as risky, likely to cause problems, easily upset, pathetic and needing protection. How might these perceptions lead to a modern equivalent of institutions, with consequent continuing isolation and loneliness? A paper by Steve Holburn in the Journal ‘Mental Retardation’ in 1990 was entitled ‘Rules Are the New Institutions’. He argued that:
“Despite the philosophy of normalisation, service provision has become more regulation-oriented and less person-oriented. This precludes responsive staff action and generates adverse consequences. The system of rules can be compared to the old institutions.”
It's worth reiterating the claim here. It is that rules and regulations, particularly about relationships, are leading to isolation and loneliness just as the old institutions did. And in both cases it is because people are cast into negative social roles.
Here is a set of rules for staff extracted from a 3,000 word policy document entitled Relationships between Staff and the People They Support, produced by one local authority responsible for service provision in the UK (Community and Adult Care Directorate, 2010):
On other similar lists of rules, I have seen instructions that staff must not have any physical contact with those they support, and that when staff leave they must not have any further contact with the people they supported. Policies such as these are being implemented by statutory, private and voluntary social care providers throughout the UK, America and other countries, led by legislation, by safeguarding, commissioning and inspection procedures, and by professional standards and guidance.
Where does the thinking behind these rules come from?
Tragically in my view, the idea has spread in many countries that direct support staff cannot and must not regard themselves as friends or family to those they support, or act as if they are friends or family. This principle is being taught in very many training and induction courses and is being mandated by rules such as those quoted. It is strongly promoted in America by a National Alliance for Direct Support Professionals, and by training organisations like Open Future Learning.
There is a video presentation on YouTube that is widely used in staff training. It is by the highly respected Canadian thinker and writer on disability issues Dave Hingsburger, who sadly died in 2021. It is entitled Not Friends, Not Family and strongly argues that supporters cannot be in these roles for those they support. The video dates from 2020 but is based on his writings and teaching over many years before.
Here is an extract from an article in the International Journal for Direct Support Professionals in 2020 which echoes Hingsburger’s view. It is headed ‘Know Your Role and Your Boundaries’:
“It is easy to start off in this field thinking that our job is to be friends with people with disabilities. We learn in college that, while we hope to have a friendly relationship with the people we support, our role is quite different than that of a friend. Friends are not paid to be with people, and don’t collect data on their friend’s behaviours and don’t leave when a position with better hours comes along. We found that was important to remember when we started working – you will likely really enjoy the people you are supporting and may be anxious to show them how likeable you are. We want them to like us, but we need to be honest about our relationship. We like each other and enjoy spending time together, but it is not the same as friendship. It is important to start off with clear boundaries – and be able to communicate these boundaries without offending or seeming mean.” (Tanner et al, 2020)
If you Google words like ‘boundaries’, ‘relationships’ or ‘professionalism’ in the context of adult care services you will find this message is practically universal. It is propagated everywhere and there are very few dissenting voices. But one of my favourite quotes is from the philosopher Bertrand Russell. He once said:
“Even when the experts all agree, they may still be mistaken.” (Russell, 1928)
Of course we want to be friendly and respectful towards people we support, but you can be friendly and remain at a distance; you can’t if you’re a friend. ‘Friendly’ means you greet someone with a handshake, ‘friend’ means you greet them with a hug. And which of those do people who have no friends or family contact need most?
I believe that the Not Friends, Not Family principle plays into the hands of a bureaucratic and control agenda instead of a common sense and humanity agenda. It is totally against social role valorisation and it is condemning tens of thousands of people to lives of loneliness. It portrays people as pathetic, risky and problematic. What sort of a role is it to be seen as someone I can’t have as a friend? Here are some examples I have come across of harm arising from a rule-based ‘not friend’ policy:
There is nothing in the definition of friendship that says you cannot be paid for the support you give, cannot carry out assessment of your friend’s needs, or cannot leave your paid role. If risk is perceived, the task is risk management not risk avoidance. Services can ensure friendship doesn’t interfere with people’s other needs, that needs are identified rationally, and that people are encouraged to maintain friendships after they leave the service. None of this requires friendship to be forbidden!
In his video, Hingsburger bemoans the high turnover of support staff. This certainly limits the establishment of lasting friendships. However, I would make two points about this. First, I think it is possible that dissatisfaction with the restrictions imposed on their role might well be a reason for turnover being higher than necessary. Second, it is also the case that many support staff do in fact stay working with the same people for long periods of time, maintaining a long-term presence in the life of the people they support. Far from being prevented from befriending, they should be seen as ideally placed to implement and model a successful friendship policy.
To me, the fundamental essence of friendship is sharing important aspects of your life on an equal basis. This is what I would like to see:
I believe that the single most effective instruction that can be given to staff is that their role is to be a friend to the person they support and be open to them being a friend to them. This would, in my view, prevent abuse. There are still horrific instances of physical, emotional, sexual or financial abuse of people receiving services. Seeing people and treating people as your friend is a strong safeguard against these things. It would reduce what I see as the biggest but least recognised form of abuse – enforced loneliness, isolation, friendlessness and lack of family experience. It would improve the humanity of service provision and would greatly enhance the quality of experience on both sides. Mary would never be left on her own on her birthday; her supporters would willingly give up their own time to be with her.
It would involve the exact opposite of the rules I quoted before. Here’s my list. It’s not headed ‘Rules’ but Encouraging the Valued Role of Friend:
I believe that this can only be achieved by pursuing SRV principles. For example, we can look at image and competency in relation to the social role of friend.
The first step is to perceive people with learning disabilities in a positive light. They are not pathetic, alien creatures. They are just like us, fellow human beings. They are survivors, good teachers and often good friends. Emotional intelligence is often high amongst people with learning disabilities. Many of us will know someone who is specially sensitive to our mood and will spontaneously comfort us if they sense we are upset.
We can project these perceptions through positive imagery, maybe particularly in language. We can describe people as our friends, as survivors of difficult life experiences, as resilient, as good to be with, as teaching us a lot about life and relationships.
We can also work on competency by teaching through equal sharing of interests and activities, by helping people to share their lives with us on an equal basis, and by helping the development of communication and participation skills. We can improve people’s happiness by showing love and affection.
All this can be achieved by staff of services being allowed and encouraged to be in an equal and reciprocal relationship of friendship with the people they support. This can work alongside and enhance the efforts of those staff and of other projects and schemes to find and support friends and family experiences for people outside services.
So let’s abandon the ‘Not Friends, Not Family’ rule-dominated approach, and use every means we can to promote the highly valued social role of friend.
Unfortunately, because so much power is behind the ‘Not Friends’ policy, support workers themselves find it impossible to argue against it. They have no choice but to obey. However, those of us with more influence can resist power if we think it is necessary. I hope my talk will encourage at least some of you to do so.
Atkinson D (1989) Someone To Turn To: the Role of Front-line Staff. Kidderminster, UK: British Institute of Learning Disabilities.
Community and Adult Care Directorate (2010) Relationships between staff and the people they support: guidance for staff. Gloucester, UK: Gloucestershire County Council.
Hingsburger D (2020) Not Friends, Not Family. www.youtube.com/watch?v=yakEqrbRr0c.
Holburn C S (1990) Rules: the new institutions. Mental Retardation, Vol.28, 89-94.
L’Arche (2021a) What We Do. www.larche.org.uk/what-we-do.
L’Arche (2021b) Meaningful and Mutual Relationships. www.larche.org.uk/News.
Love To Know (2020) No Family, No Friends – How to Cope Being Alone. family.lovetoknow.com.
National Health Service (2005) Adults with Learning Difficulties in England. London: Health and Social Care Information Centre.
O’Brien J (1988) Framework for Accomplishment. Lithonia, Georgia: Responsive Systems Associates.
Pitonyak D (2003) Loneliness is the Only Real Disability. www.dimagine.com.
Randell M and Cumella S (2009) People with an intellectual disability living in an intentional community. Journal of Intellectual Disability Rersearch, Vol.53, 716-726.
Russell B (1928) On the value of scepticism in The Collected Papers of Bertrand Russell. London: Allen and Unwin, 1966.
Tanner J et al (2020) Stepping into the role of direct support professional. International Journal for Direct Support Professionals, Vol.9, Issue3.
Williams P (2021) The cold comfort of safeguarding. Community Living, Vol.35, No.1, 12-13.
Wolfensberger W (1969) The origin and nature of our institutional models. In: R Kugel and W Wolfensberger (eds.) Changing Patterns in Residential Services for the Mentally Retarded. Washington DC: President’s Committee on Mental Retardation.
The publisher is Citizen Network Research. The Social Role of Friend © Paul Williams 2023.