Living with learning difficulties: Emma’s story

Paula Jean Manners, Trainee Clinical Psychologist, Centre for Applied Social & Psychological Development, Salomons, Canterbury Christ Church University, Broomhill Road, Tonbridge, UK  and Emma Carruthers, c/o Assessment and Intervention Team, Joan Bicknell Centre, Burntwood Lane, Wandsworth, London, UK

Accessible summary:

* This article is about Emma’s experience of living with learning difficulties.

* Emma expresses a lot of anger, and talks about feelings of loss.

* This article is interesting to people with learning disabilities because they can see if their experience is like Emma’s in any way.

Keywords: Experience, learning difficulties

Introduction:

This paper presents Emma’s story: her experience of living with learning difficulties. In November 2003 I began working with Emma, a 29-year-old woman with learning difficulties, who lives in a community care home. I worked as an Assistant Psychologist alongside my colleague, Marina Russ, a Challenging Needs Nurse with the Assessment and Intervention Team, as part of South West London and St George’s Mental Health NHS Trust. The team works with people who have learning difficulties, mental health needs and ‘challenging behaviour’, using cognitive and behavioural therapy in addition to more psychodynamic methods.

Throughout my work with Emma I was struck by her capacity to articulate the struggle for her sense of self. The ‘who am I?’ question, resonated with me because it made me think not only about the ways in which Emma and I were similar, but about the fundamental difference between us: Emma has learning difficulties and I don’t. This difference became a focus of our work when Emma wanted to learn about the cause of her learning difficulties. She told me about her feelings of frustration of being unfairly ‘handicapped’ by society because she has learning difficulties. Unable to answer her question ‘who am I that I have a learning disability and you don’t?’ adequately, I thought she might want to talk about the disabling services, and become a campaigning voice for Learning Disability Rights. Interestingly, I did not consider myself to be a service but was assuming the role of advocate. Looking back, I probably did this as a defence against my feelings of powerlessness to help her in any other way. I now know that I was grossly missing Emma’s point: she tells me that she simply wants her voice to be heard, which would speak just for herself. The question for me at that time was if I could bear to hear what she had to say. By co-writing this article, Emma also got to know how I felt hearing her story. Emma told me that she believes I now understand that living with learning difficulties ‘isn’t very nice’ but she also tells me that I will never fully understand what it is really like; and she is right.

Emma said that she wants to tell people about her emotional experience of living with learning difficulties. This article presents Emma’s story as told to me over the course of 8 hour long sessions, during which Emma wrote down what she wanted people to know. It also presents my responses to her story (see Manners & Russ 2006).

Ethics:

Informed consent means that Emma needs to know to what she was consenting. Emma first decided that she wanted to tell her story after reading accounts of other people with learning difficulties. Emma said that she wanted everyone to know that she didn’t ask to have learning difficulties, she was angry about it and that it was ‘awful’ (her word). I wondered if Emma might like to tell people exactly what living with learning difficulties is like through writing an article for a journal. We looked through some journals together and talked about who would read her story if it were published. Emma then said that she thought writing an article was a good idea. We looked at the Learning Disability Journals and talked about what it would mean if what she said appeared in print. We also talked about what it would mean if it didn’t. Considering the fact that a published article is for a public audience, Emma made the decision not to talk about her childhood, which she said was private, but that she would talk about the more recent events to illustrate her experience. There were aspects of her life situation, at that time, that Emma chose to keep private. Emma read through earlier versions of this article, commenting and editing. This final version includes everything Emma wanted ‘everyone to know’ and excludes anything Emma wanted to remain ‘private’.  Once a final draft of the article was completed I went through it with Emma again, checking if she was happy for everyone to read what she said. Emma made no changes at this time.

Anonymity:

Emma wants to use her real name in this article so that she can be identified as the author of her story. I am also using my real name. She changed the names and identifying features of other people and places in her accounts of her experiences, because in her words ‘they haven’t given their permission’.

Confidentiality:

Once Emma had completed writing her story, I shared it in supervision with her informed consent. Following this consultation, Emma was offered some individual private work to address some issues and feelings that came up for her through writing her story. While Emma is happy for her story to be told in a journal for others to read, she understandably wants the therapeutic work around specific feelings to remain private, which it will.

Methodology:

Using content analysis on Emma’s story, three themes of loss, blame and anger emerged. Following on from the private individual sessions, in which Emma confirmed that these are relevant personal themes, Emma returned to writing her story by allocating sections of her story to each of these three themes. The private work, however, remained private and Emma’s story remained unchanged. This process of analysis not only confirmed inter-rater reliability but also gave Emma room to explain what she meant when she said something. Consequentially, Emma interprets and explains her own story.

Emma told me that the theme of Loss relates to the loss of a dream of a normal life, and also to the losses incurred in the life of a person with learning difficulties. The theme of Anger relates to anger at being a victim. The theme of Blame relates to who or what caused the learning difficulty. Emma had support for working through these complex feelings; the processes of which, as already explained, remain confidential. The impact on professionals, and professional defences against these feelings are discussed in the paired article (Manners & Russ 2006).

Loss:

Loss is a major theme in learning difficulty experience where one loss, for instance bereavement, is often compounded by the loss of a home, a carer and personal possessions (see Hollins 1995 for example). Certainly Emma talked a lot about what she feels she has lost. But there was also a sense of looking for someone to blame for her situation and there was a lot of anger. Feelings of loss, blame and anger are commonly associated with grief and mourning. Bicknell (1983) also considers that feelings of loss emerge when a person has insight into their disability.

Emma mourns the loss of a dream of a normal life and talks about how her life would be if she didn’t have learning difficulties. Emma imagines that she may have a flat of her own, a boyfriend, whom she may one day marry, three children and a job in Sainsbury’s.

If I didn’t have a learning disability I would have my own life and it would be easy to do normal things:

This shows an awareness of the disabling effects of difference. As a person with a learning difficulty, Emma says that she does not feel that she owns her life; she feels that it is controlled by services. Emma told me that decisions are made about where she can live and how she spends her time but whenever she makes a choice, nobody listens.

They force me to wait and tell me what to do with my life:

In this way, Emma is clear that it is services that disable her. This is an example of what Sinason (1992) calls ‘the secondary handicap’ and illustrates the more recent concept of disability as social construction. Emma presents the example of wanting to see her friend, who moved away, but that she is dependent upon different teams to organize this and so must wait.

'I really do want to see Martha (not her real name) but they (social services) are too busy. It’s like waiting for Christmas. I ask and ask and it is like a brick wall. No one listens. It is like they are deaf. It makes me angry. I am forced to wait. I am 30 next year; I am fed up with this world, waiting and waiting and nobody listening.'

This dependency on services reinforces her disabled position in society and removes her feelings of control over her life.

Emma also has insight into how she is perceived by people who do not have learning difficulties. Emma calls them ‘mainstream people’. She says she believes that having learning difficulties is unfair and that ‘life is wrong’. Emma complains that her day-services are too crowded and there are too many people with learning difficulties there. She wants to be around ‘mainstream people’, or at least have the opportunity for a mainstream life.

'The services are stupid. The people with learning difficulties want to be normal and we don’t have choices and it is not fair and we want to be normal and it is difficult to have learning difficulties.'

Dudley (1997) considers that restrictions imposed on persons with learning difficulties reinforce stigma, while doing normal things is part of being a member of the normal world. A respondent in Jaskulski et al.’s (1990) study said: “I want to work for the same reason other people want to work, which is to support myself and to feel like part of the world. Why is that so hard for people to understand? “(Jaskulski et al. 1990, p. 72)

Emma is almost 30, and at an age when many women are thinking about settling down, if they have not done so already. Emma says that although having learning difficulties is hard, it is easier to be a child with learning difficulties than it is to be an adult.

‘Being a child with learning difficulties is easier than being an adult with learning difficulties’. Yet Emma accepts that at her age ‘It is time to move on and not to be a child anymore’.   Emma also talked about how she is expected to be able to do everything. We talked about how a person without learning difficulties who is unable to cook would still be allowed to live independently. In a discussion about learning difficulties and abilities, I told Emma that I could not cook and Emma said: ‘You should live here (in the care home) then!’

Perhaps being an adult with learning difficulties is harder than being a child because adults with learning difficulties are socially constructed as perfect children, not quite fully developed adults from whom no mistakes will be tolerated. We talked about Emma’s theory about this dual or double standard a lot. Emma wanted to describe how she is expected to be a perfect child: how she feels that she is treated like a child but she is not allowed to make mistakes. Emma wants a more independent life but this is a hard thing to achieve when you are under pressure not to make any mistakes and be competent at everything.

Emma is competent with her own medication, which she takes to control her asthma; she has been taking her own medication for many years; however recently Emma lost this independence when she accidentally took the wrong dose on one occasion: ‘Last month April, (the manager of the residential care home where I live) took my asthma medications out of my room and now I have to take them in front of staff and it makes me go backwards. The staff didn’t trust me with my medication and I want to be independent.’

The staff understandably responded to minimizing risk, but from Emma’s perspective she felt deskilled: made to go backwards. Emma says that this makes her feel more disabled than she actually is: ‘I want to move out of here. It is like being paralysed’.

Emma tells me that being an adult with learning difficulties is like being forced to go backwards and that she feels this experience is universal: ‘Having learning difficulties is all around the country and it is awful and it is not nice to go backwards and learning difficulties is stopping me from getting what I want and it is being called a child and being treated like a child. ‘

Having learning difficulties means not only mourning the loss of the life that could have been, but also experiencing a lot of loss. Emma tells me that she has been to more funerals than weddings. Professionals also move in and out of Emma’s network regularly; friends with learning difficulties get moved to other parts of the country and significantly, for Emma, the relationship with her last boyfriend ended when his family moved away. This was hard for both Emma and her boyfriend. Emma told me that she understands that in an effort to protect them both from the pain of loss as a result of an imposed move, Emma’s boyfriend told her that he no longer loved her, and this was very upsetting: 'My last boyfriend went (away) to live and I miss him and the relationship is ended. It was his mum’s choice.'

Emma also relatively recently suffered the bereavement of both her mother and her best friend. While Emma did have therapy sessions through our service, she says that she doesn’t feel that services were really able to provide the emotional support she needed: 'Nobody understands when these people died because I live here (in the care home). They don’t understand my feelings cause they had things to do in the office and cooking and handover and they had no time. That is a shame isn’t it?'

Anger:

Emma also decided that she wanted to write about some of her bad experiences, which seem to be directly related or in some way a consequence of her learning difficulties.

Emma lives in a residential care home and in the past she has also lived in boarding schools and went to respite care facilities: ‘I was in respite and my mum and dad lived in our house. When I was (young) and living in a residential school (a male member of staff) pulled my earlobe and told me to get out of the bath and put me in the playroom.’

Emma talked through this experience with the Consultant Clinical Psychologist in our team. This feeling of victimization is central to Emma’s experience of having a learning difficulty and it seems to have a residual feeling of powerlessness. Emma talks about the almost daily experience of being teased by local children: ‘When you have a learning difficulty you get picked on by normal children. When you are an adult you still get picked on and I find it hard. I want the kids to leave us alone.’

Many other adults who have learning difficulties share Emma’s experience of being teased, for example see Whitell & Ramcharan (2000).

Emma is keen to explain that her feelings relating to having learning difficulties are not unique to her. This exacerbates the frustration felt at the lack of understanding shown towards people with difference. This sense of injustice includes anger, rage, unfairness and the sense that life is wrong. Emma doesn’t think that learning difficulties are well understood. She wants to know why she has a learning difficulty and why ‘mainstream people’ don’t seem to understand that is it so hard: ‘I am not a fast learner and people called me lazy and it is not laziness and it is called learning difficulties and I am angry and learning difficulties is not nice and it is not fair. And this learning difficulties where did it come from?  And they don’t deserve it.’

This search for a cause for the learning difficulty results in a search for something, or someone, to blame.

Blame:

Sinason (1992) considers that learning disability has two constructing components, the first being the organic cause of the disability (the primary disability) and the second being the socially constructed disability. This secondary handicap is often seen through the learning-disabled person’s defences such as ‘the handicapped smile’ (Sinason 1992). Niedecken (2003) differs from Sinason in that he does not differentiate between primary and secondary handicap: he considers that learning difficulties cannot be divided into organic and psychological constituting components; both, however, agree that the experience of learning disability is dynamic and traumatic. Emma explains her experience of this: I didn’t ask for this. I’ve suffered all my life.

This sense of grief is perhaps why it is important for Emma to know what caused her learning difficulties. Emma has the most common diagnosis in learning disability, which is a vague description of a mild to moderate learning disability (Niedecken 2003). Emma’s quest for something to blame is a search for reconciliation with her vague diagnosis. Emma likes the idea that her learning disability is as a result of something physical and this relates to her belief that people who are physically disabled suffer less stigma, than people with learning difficulties. Emma would like to think that she developed her asthma in the womb and that the consequential lack of oxygen caused brain damage. However, she is aware that a number of factors probably caused her learning difficulties: Emma’s mother was in her words ‘an alcoholic’ and her childhood was, as she describes ‘hard’. Emma considers that her mother’s drinking is a likely cause of her learning difficulties and believes that not enough is known about the possible harm done by alcohol. Emma believes that many learning difficulties could be prevented if mothers avoided smoking and drinking during pregnancy: 'Why is babies growing up in mums’ tummy when they are drinking too much? It shouldn’t happen. And smoking as well is bad.'

Asking about the cause of her learning difficulty is painful for Emma, and a question to which I have no definite answers: ‘And it is difficult to think about how and why I have a learning disability. Everybody doesn’t understand. I want to know what caused it. Doctors should be able to save me. The midwife should have kept an eye on me when I was growing in my mum’s tummy. Mum and Dad should have looked after me properly. This shouldn’t happen in the first place.’

Faced with a vague diagnosis and uncertainty about the cause of her learning difficulties, Emma looks to a higher being for her own explanation. Emma asks God each night when she prays to explain to her why she has learning difficulties. Emma also visited Lourdes (a place of Pilgrimage) to ask ‘the Lady Mary’ to cure her learning difficulties; but this did not happen. Emma therefore feels angry with God and she says that this is a hard feeling to bear. Being angry with God, however, means that she does not have to be angry with her mother for drinking during her pregnancy.

Conclusion:

While there is a political value to Emma’s story about being disabled by services and society, there is a therapeutic value for Emma in acknowledging her own history (see White 1995, 1997). The themes of loss, anger and blame seem related to a grieving process. Emma says that having learning difficulties has robbed her of a normal life: ‘I didn’t ask for this. I’ve suffered all my life’.

Through co-writing this article with Emma I became an eyewitness to Emma’s struggle for identity, for reconciliation with her past, and for the strength to keep moving forward. For me this has had a profound professional and personal impact. On a personal level Emma has taught me that life with learning difficulties is, in her word, ‘awful’. As a professional I felt powerless to make it less painful. This was my challenge: to bear witness to the difference between us and be at the receiving end of her painful feelings. An American poet, Walt Whitman once said:

“Have you not learn’d lessons only of those who admired you, and were tender with you, and stood aside for you?

Have you not learn’d great lessons from those who reject you, and brace themselves against you? Or who treat you with contempt, or dispute the passage with you?” (Whitman 1894)

In this way I feel that, through writing this article, both Emma and I have been on a journey. Co-incidentally, this article was the last piece of work we did together; when we were saying our goodbyes Emma reminded me of what she taught me and made me promise not to forget. The impact of this work, specifically the decision to bear witness, is discussed in the paired article (Manners & Russ 2006), which details one session when Emma took the lead and showed my colleague, Marina, and I what having learning difficulties is like.

Acknowledgements:

I would like to thank, or rather congratulate, Emma for her courage in writing her story. I would also like to dearly thank my colleagues Marina Russ, Dr Jane Bernal, and my supervisor, David Cotson for their encouragement, instrumental insights and helpful comments on this paper.

References:

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Hollins S. (1995) Managing grief better: people with developmental disabilities. Habilitative mental Healthcare Newsletter 14, 3, 50-52

Jaskulski T., Metsler C. & Zierman S. (1990) The 1990 reports: forging a new era. Washington DC, National Association of Developmental Disabilities Council, May 1990.

Manners P.J. & Russ M. (2006) Working reflexively in learning disabilities: what Emma taught us. Br J Learn Disabil, doi: 10.1111/ j.1468-3156.2006.00391.x.

Niedecken D. (2003) Nameless: understanding learning disability. UK, Brunner Routledge.

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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.

Whitman W. (1894) Strong Lessons. In: Leaves and Grass. Philadelphia, David McKay.

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.