Opinion

Shame and its role in the lives of people with learning disabilities

A reluctance to address feelings of shame may hinder our understanding of what is important to service users  

A reluctance to address feelings of shame may hinder our understanding of what is important to service users  


Picture: iStock

I worked with Ava, a woman with learning difficulties, around the time that her father died. What was key for her was not the grief and sadness for the loss of her father, it was the fact that her mother and siblings did not feel she could cope with the demands of attending his funeral. They were scared she would make a lot of fuss and told her it would be too much for her and that they were only thinking about what was best for her. She was hurt and shocked by this.   

I have also known many service users with learning disabilities who have refused all contact with any activities with their peers. This has meant that they have missed out on services that could have helped them. Some have been clear that this is because it involves being with other people with disabilities.

Each of these examples demonstrate the influence of shame. In psychotherapy, shame is one of the most challenging feelings to deal with as there is a persistent negative sense of self that the person clings to despite attempts to shift it.

‘The Cinderella of the emotions’

The psychoanalyst Charles Rycroft described shame as a ‘forgotten and neglected emotion’, and claimed it is ‘the Cinderella of the emotions’. It can involve feeling disrespected, dishonoured, humiliated, insulted, mocked, embarrassed or rejected.

Shame is about identity – who am I and what do people think about me? Defined as the feeling of having done something dishonourable, improper and possibly cowardly, it can result in self-loathing.

‘When shame does get discussed – which is rare – it often involves scandals in the health service’ 

Shame is also associated with a public social emotional display. In the past, shame was a key part of punishment, such as a criminal being put in the stocks,  a child being forced to stand in the corner of class wearing a cap with the letter D for dunce on it, or women in France who collaborated with the Germans during the second world war having their heads shaved. In effect, they were, marked, humiliated and shunned, and this was a warning about who they really were.

When shame does get discussed – which is rare – it often involves scandals in the health service, which have shown that the lives of people with learning disabilities are systematically afforded less value than others. I know other health professionals will share my sense of shame about this and, although we have this shared guilt and shame, it does not transfer to our thinking about the internal experiences of people with learning disabilities.

Confronting shame

It often feels shameful for services to discuss shame in the lives of the people we support. I feel concerned that, in the rush to give people positive experiences and feedback, we miss the key features of their negative experiences. For many service users it is an internal experience – part of their daily lives which professionals may not be aware of, or may not want to be aware of. This may be partly because of our experiences of shame and what the subject stirs up in our own emotions. If that is the case, we need to learn from service users such as Ava who was able to discuss her hurt and upset and did not let it dominate her life. 


About the author

David O’Driscoll is a visiting research fellow at the University of Hertfordshire

 

 

 

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