Working reflexively in learning disabilities: what Emma taught us

Paula Jean Manners, Trainee Clinical Psychologist, Centre for Applied Social & Psychological Development, Salomons, Canterbury Christ Church University, Broomhill Road, Tonbridge, UK; Marina Russ, Community Psychiatric Nurse, South London and Maudsley NHS Trust, Lambeth Mental Health in Learning Disabilities Team, York Clinic, Guy’s Hospital, London, UK and Emma Carruthers, c/o Assessment and Intervention Team, Joan Bicknell Centre, Burntwood Lane, Wandsworth, London, UK

Accessible summary

* This article is about the feelings of powerlessness that professionals feel to cure learning disability and to answer questions such as ‘why do I have a learning disability?’

* We describe how Emma showed us through role play what it was like to have learning difficulties.

* This article is interesting to people with learning disabilities because they can see how professionals struggle to understand what it is really like to have learning difficulties.

Summary

The theme of powerlessness is relevant to learning disability because learning disability happens to people who do not choose and do not want to be learning disabled. Additionally, although there are many ways in which professionals can make the experience of living with a learning disability easier, we are powerless to cure learning disability, or answer the question asked by one of our clients (Emma) ‘why me? (and not you)’.

Keywords

Experience, learning disability, powerlessness

Introduction

Having a learning disability is disabling in two senses; first, the primary or organic disability, resulting in cognitive impairments, and secondly the disability acquired as a consequence of unmet needs (Rapley 2004; Sinason 1992). V. Sinason (2004, personal communication) also argues that the emotional needs of people with learning disability are particularly complex because having a learning disability is a traumatic experience. This paper is concerned with professional feelings of powerlessness in learning disability and describes our work with Emma who has also written about her experience of living with learning difficulties in the paired article (see Manners & Carruthers 2006).

Marina was a Challenging Needs Nurse and Paula was an Assistant Psychologist; together we worked within a specialist, multidisciplinary team called The Assessment and Intervention Team (AIT) within, what was at the time of writing, the Learning Disability Directorate of South West London and St George’s Mental Health NHS Trust.

The team works in the community with people with learning disabilities, mental health needs and/or challenging behaviour. Challenging behaviour as defined by Emerson is:

“…culturally abnormal behaviour of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit use of, or result in the person being denied access to, ordinary community facilities”. (Emerson 2001, p. 3)

The team is multi-disciplinary and consists of Psychiatry, Psychology, Nursing, Speech and Language Therapy and administrative support; together providing a systemic approach to client work. This means working with the person and their carers, and adopting a holistic and person centred planning perspective of clients’ needs and difficulties.

In this paper we focus on our work with Emma (who wrote about her experience in the paired article ‘An experience of living with a learning disability: Emma’s story’, Manners & Carruthers 2006), primarily because in addition to Emma writing about learning difficulties from her perspective, she is keen that we also wrote about how she taught us that ‘having a learning disability isn’t very nice’. We decided to describe, with Emma’s permission, one of our weekly sessions in which she took the lead by deciding that she wanted to show us how it feels to have learning difficulties. Emma’s comments on this paper are also included.

Ethics

Emma’s informed consent and permission was obtained to publish our experience of what she taught us.

Background to the Session

Emma Carruthers was a 29-year-old woman with a mild learning disability. She lived in a group home and attended a local day centre and a theatre company. Emma was referred to AIT a few years ago, and part of our work involved helping Emma to discuss her feelings around having a learning disability, and what this meant to her. This work was informed by, and supervised from, a psychodynamic perspective on learning disability, which addresses these types of complex feelings. Emma is very angry about having a learning disability and would like people to know how having a learning disability ‘disables’ her.

Prior to the session described in this article, Emma described the fact that she had learning difficulties as being ‘awful’ and we acknowledged that Emma’s experience of having a learning disability must be a very difficult experience.

This acknowledgement seemed to give Emma permission to be angry about having a learning disability. Then Emma began asking us difficult questions such as why does she have a learning disability and we don’t. We became aware that some of her anger was directed at us, the professionals, without answers to her questions. Emma told us that having a learning disability causes you to be treated like a child; you feel vulnerable, powerless to make choices, or have how you feel taken seriously. We were keen to show Emma that we did want to hear her and her experiences of what it is like to have learning difficulties, so we asked Emma if she would like to use some of the sessions to talk about this. In supervision we were told to be ready for a lot of anger when discussing this topic with Emma (V. Sinason 2004, personal communication).

The session

We began the session by letting Emma know that we were keen to hear about her experiences of discrimination and the experiences of being victimized. We were anxious that in this context Emma also could give her opinion on what could, or should, change to make having learning difficulties easier to bear. We focused on the services provided for people with a learning disability. Emma was very enthusiastic about this topic, and made some very creative suggestions about how services for people with learning difficulties could improve.

She was concerned that all people with learning disabilities are provided with a very similar service, specifically day centres, and that this did not take into account peoples’ individual strengths. Emma also felt that the money provided for learning disability services would be better spent on helping people to do what they wanted. One example of this was the bus which takes people to the day centre: Emma said that the money spent on this bus could be better-spent teaching people to travel on their own, and that only people who really need to should get the bus.

We also wanted to ask Emma about her experiences of bullying and discrimination, which she had talked about previously. We asked Emma what types of names she has been called because she has a learning disability, and how this made her feel. Emma previously told us she experiences regular teasing by ‘mainstream’ children. This is an experience shared by many adults with a learning disability (see Whitell & Ramcharan 2000).

Emma told us that this was difficult for her to talk about but she wanted to communicate to us what it is like. After a period of silence, Emma announced that she would like to do some role-play. She nominated Marina as the person with learning difficulties and suggested that Paula collude with her in taunting Marina while she ‘waited for the bus’.

Emma both participated in and directed the role-play, initiating the name-calling, face pulling, pointing and teasing. On the whole, Paula copied what Emma did or took direction from her; for example at one stage Emma told her to walk around Marina and point at her.

What follows is individual reflection from both of us, on the experience of the role-play, as both the ‘bully’ and the ‘victim’.

Paula as the bully

I was surprised to be assigned the role of ‘the bully’ and for some reason felt flattered; perhaps I did not suit the role of a victim. My inflated ego enthusiastically took direction from Emma. Marina was assigned the role of the ‘victim’, the person with the learning disability, waiting at the bus stop. While we were pleased and surprised with Emma taking the lead in this session, neither of us knew where this role-play was going and so it was with a mixture of feelings that we began the role-play. Immediately, the power of my role took over; I spontaneously found things to tease Marina about. Marina wore Doctor Martin boots and I took shameful surprising delight in singing, ‘special shoes for special needs’. Marina at this stage was sitting on the floor; rocking and whining ‘go away!’ At this point I wondered if Marina was experiencing a similar feeling of being overtaken by her role. I looked to Emma for direction; she was laughing, seemingly thoroughly enjoying her experience of power. ‘Are you getting the special bus?’ she taunted. Marina jumped up and shouted ‘go away!’ Emma laughed. Marina said ‘Here’s the bus; I’m getting on the bus. I’m on the bus now’, and this was our cue that the role-play was over. Emma initially suggested we run after her but soon after agreed that perhaps we should stop there.

Marina as the victim

When Emma suggested a role-play I was very enthusiastic. When she suggested that I be the person with a learning disability I became a little less so. Initially I played ‘dumb’, not speaking, just standing at the imaginary bus stop. When the name-calling began, I tried to ignore it, but eventually it did become almost real.

I was trying to imagine what it would feel like to really be in this situation, but I was also experiencing some of what it may be like. I felt very vulnerable, both as a person and on a professional level. I wondered what might happen if I broke down – how this would affect my relationship with Emma. Mirow (2003) says that admitting our vulnerabilities and displaying our feelings in front of clients may feel uncomfortable. At one point I sat down on the floor and began to rock. I was shouting, ‘Go away’. I felt like crying. Paula began to tease me about my shoes, and Emma joined in. I just wanted it to stop; yet on another level I considered how powerful Emma may have felt: being the abuser rather than the abused. I did not want to take this away from her.

I felt increasingly uncomfortable, vulnerable, frightened: not safe. We had not planned this aspect of the session; this was Emma’s idea. Although I knew that nothing ‘bad’ was going to happen, I was after all in a group home with staff downstairs, and one of my own colleagues with me, I was worried that it may. Paula and Emma began to pretend kick me; Paula kicked my foot. On a very primitive level I felt frightened for my life.

I stood up, and was frantically trying to think of a way to end the role-play. I pretended that my bus had arrived and jumped, shouting ‘I’m on the bus now’. Emma said to Paula ‘Let’s follow her!’ but I had had enough. I told Emma that I could not go on with this and that I felt tired; she looked disappointed.

The aftermath

Both of us had quite different feelings after the session finished. While Paula as the bully continued to feel slightly euphoric after the session, and took great pleasure seeing Emma bounce about and tell others in the house that she had a brilliant session, Marina (the victim) looked quite pale and shaken. Concerned, Paula asked if Marina was okay; Marina said she felt quite nauseated. Both of us sought extra supervision and support after the role-play session, because the residual feelings were so strong. In the following session with Emma, she told us that she felt like a bully. We realized that without planning, we had omitted any debriefing, so the residual feelings from the role-play still needed to be discussed. Following this we sought supervision again, but more specifically on how to debrief with Emma. In the next session we told Emma that we thought she was very clever using drama to show us what it is like to have a learning disability. Emma looked reflective and said, as if we could never possibly understand, ‘it’s worse than that’.

There was a possibility that in this role-play, Emma invited Paula to join her in sadistically mocking herself (D. Cotson 2004, personal communication). This is an uncomfortable thought, but one which suggests something about the way anger may manifest in learning disability, that is to say that the anger is both projected inwards, in a form of self hatred, and outwards, in the form of the question ‘why me?’ Emma is right when she says, ‘I didn’t ask for this’ and ‘I don’t deserve it’ and Emma is understandably very angry. Roberts (1994) noted that through working in Learning Disability, we place ourselves under threat in a number of ways: through both the impact on our safety and sanity because of the unrelenting demands and often disappointing results in this field. The outrageous fantasy that we could make learning disability easier to bear is a self-imposed task, which is powerful, very persecutory and, of course, unachievable (cf. Race 1999). Disability and ill-health are closely associated (Saunders 2001) but people who are disabled are not necessarily going to get better. We noticed that earlier on, similar to the staff in Roberts (1994) study, we split off, a psychological term for a type of switching off, any anger at Emma who refused to feel better about having a learning disability and encouraged Emma to blame services for not being more sympathetic to her needs. This means we could not make Emma feel better because we were powerless to change the fact she had a learning disability, but we could become advocates for her anger at services. Interestingly in this defensive action against our feelings of powerlessness we did not consider ourselves to be ‘services’.

Success is deeply validating, strengthening the capacity to act constructively. But failure, or even limited success, is felt to demonstrate inner deficiencies, and is intolerable. (Roberts 1994, p. 117)

In our work with Emma we have both acknowledged that she is angry and that we can do little to make her feel any better about having learning difficulties. The session described in this paper also highlighted Emma’s experience of feeling powerless as a person with learning difficulties, which is both projected onto us as professionals and is a reality in the field of learning disability because there is no ‘cure’. Acknowledgement of this professional powerlessness is to admit to being vulnerable.

Mirow (2003), in a discussion about professional vulnerability, reflects on a session where he communicated his feelings of helplessness to a woman with a learning disability who repeatedly threatened suicide.

I told her it appeared I could do little to help. Her response surprised me: at last, someone was being genuine and was genuinely trying to understand and accept her as she was, instead of treating her as a vulnerable and passive person who was supposed to comply with well-intentioned interventions. (Mirow 2003, p. 37)

When we asked Emma to comment on this paper, Emma said that she feels she has taught us something. Before we worked with Emma we assumed (wrongly) that people with a learning disability didn’t really mind having a learning disability. Emma has told us that she feels proud that she taught us otherwise and asks us that we never forget.

Emma has taught us that the tasks for professionals are as follows:

*To examine the association between vulnerability and learning disability and the resulting stigma.

* To reflect on our self-appointed powerful, yet in many ways powerless, position as professionals in the field. The challenge for professionals is to acknowledge and reflect on the dynamics of power and powerlessness, within the therapeutic relationship.

Conclusion

Looking back, it is easy to see how we both attempted to defend ourselves against Emma’s anger. We decided that Emma was angry at services that disable; we wanted Emma to tell us how she thinks this works. We did not consider ourselves as ‘services’; we detached ourselves from our professional roles and became self-appointed advocates for Emma. Emma disarmed us with her innovative role-play: enabling Paula to experience the intoxicating power of bullying and enabling Marina to feel momentarily incapacitated as a victim of relentless teasing. Emma, directing us both, achieved her objective; we both felt the rage projected inwards (the victim) and rage projected outwards (the bully), that are similar to the self-hatred and anger-at-the-world, which may co-exist for many people like Emma living with learning difficulties.

Acknowledgements

We would like to thank Emma Carruthers for her kind permission to write about our drama session, and for her comments on our paper. We would also like to thank David Cotson, Consultant Clinical Psychologist; Valerie Sinason, Psychotherapist and Dr Jane Bernal, Consultant Psychiatrist, for their supervision, helpful insights and comments regarding this work.

References

Emerson E. (2001) Challenging behaviour. Analysis and Intervention in people with severe intellectual disabilities. 2nd ed. Cambridge, Cambridge University Press.

Mirow R. (2003) The power of vulnerability. Learn Disabil Pract, 6, December: 36–39.

Race D.G. (1999) Social role valorization and the English experience. London, Whiting & Birch Ltd.

Rapley M. (2004) The social construction of intellectual disability. Cambridge, Cambridge University Press.

Roberts V. (1994) The self assigned impossible task. In: Obholzer A., Zagier Roberts V., Krantz J., editors. The unconscious at work: individual and organizational stress in the human services. Routledge, Taylor & Francis Books Ltd: 110–20.

Saunders M. (2001) Concepts of health and disability. In: Thompson J., Pickering S., editors. Meeting the health needs of people who have a learning disability. UK, Bailliere Tindall, Harcourt Publishers Ltd.

Sinason V. (1992) Mental handicap and the human condition: new approaches from the

Tavistock. London, Free Association Books.

Whitell B. & Ramcharan P. (2000) The trouble with kids: an account of problems experienced with local children by people with learning disabilities. Br J Learn Disabil, 28: 21–24.

Manners P. J. & Carruthers E. (2006) Living with learning difficulties: Emma’s story. BrJ Learn Disabil, doi: 10.1111/j.1468 3156.2006.00392. x.

This article first appeared in the British Journal of Learning Disability in 2006.

Published on this website in January 2011.  Emma Carruthers died in July 2019. Her contribution to this website continues to be relevant and important.