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'Don't Dis' Me!' using CAT with Young People who have Physical and Learning Disabilities

Collins, S., 2006. 'Don't Dis' Me!' using CAT with Young People who have Physical and Learning Disabilities. Reformulation, Winter, pp.13-15.

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There are 160 full time students in the college where I work. It is one of 16 across the U.K. and changes in government policy, over the past 5 years, have meant that we now receive students with more complex medical, physical and emotional needs. Although most of our students have Cerebral Palsy or Spina Bifida, 1 in 8 have a life-limiting illness such as Duchennes Muscular Dystrophy, and approximately 10% have an acquired brain injury. In addition to their physical disability the majority of students have some degree of learning disability. Amongst our students, there is a wide range of physical and cognitive ability, as well as diverse emotional experience. Some can walk, others are in wheelchairs: some can speak and others use assistive technology to communicate. Some students have been very protected and are ‘childlike,’ while others are streetwise.

All students can access some level of psychological service via self-referral or through a staff member. The service offers both direct and indirect work and includes behavioural management, advice and training. Specialist neuropsychological assessment and treatment is available for those with acquired brain injury. There are also one to one talking therapies and a service for those who have life limiting diagnoses. For a proportion of the students a specialist CAT approach is offered directly, and last academic year CAT skills training has been provided for personal tutors. The aim of the training is to help tutors to recognise the main reciprocal roles they may be invited into and so enable them to work more effectively with students and compliment individual therapy.

In many ways the issues that students bring to the service are the ordinary things of a young person’s life, which may be seen in any other educational setting. The ‘difference’ is the impact that their disability has on how our students manage these common themes.

The challenges in maintaining ‘relatedness’ when I am working with the students are similar to those described by King (2005), when  working with adults who have a learning disability. Within my own work, considerations have included keeping a sense of the safe therapeutic space within a predominantly educational environment; managing the complexities of being a therapist for many students; ensuring that students perceive the service as confidential; and keeping appropriate boundaries. Sharing a CAT formulation with staff groups has also been challenging and stimulating, as has adapting the materials of CAT for use with this age group with the range of disabilities they present. Continuity of the therapeutic alliance can be affected by college terms, which are based around the academic year of 9 months. In effect a 24 session CAT may last an entire year and the therapy can be disrupted by breaks every 6-7 weeks.

Themes in Psychotherapy with students and how they relate to reciprocal roles.
Psalia and Crowley (2005; and in this issue) and King (2005) have described the common reciprocal roles when working with people who have a learning disability. Within my work there are also some recognisable RR patterns, some of which are the same as those described by King (2005), for example ‘damaging-damaged’.

There can be a sense that someone somewhere is responsible for the damage that has been done to the disabled person. There is also a sense  that a ‘perfect and able bodied’ ideal other exists alongside them. In the therapy space it can sometimes feel as if there is another person in the  room and if only that ‘person’ were the physical self that was expressed, all would be well.

This ‘perfect me’ is usually the ‘me’ that the students would like to be and is more noticeable and valid than the ‘invisible, overlooked and  unheard me’ they present with in therapy. Able- bodied people are also idealised and seen to have no difficulties at all in their lives because they are ‘not damaged’. This inevitably needs to be addressed within the therapy, especially when there is ‘envy’ of able-bodied people, and the
therapist is able-bodied.

Those students who have very mild Cerebral Palsy and who can communicate verbally and are able to walk or have minimal disability can experience both the higher expectations of others (teachers, staff, parents) and of themselves, with a partial denial of the fact that they may be damaged at all. This can sometimes lead to them presenting with grandiosity and a narcissistic split leading to an admiring/admired and rubbishing/rubbished set of RR’s.

Themes that students present with, which can be mapped onto the damaging/damaged RR, are the internalisation of parental grief at the time of birth and grief at their loss or reduction of opportunities for a ‘normal’ life.

Obviously, a student’s concept of their early life is based on what they have been told by their parents. Emotional reactions include a sense of both their own uniqueness at surviving with some pity for the ‘baby’ they were, tinged with anger or bewilderment about how it was that they came to be damaged. Where only one of a set of twins has survived, there may also be some sadness, guilt, confusion and a sense that by carrying all of the parental expectations they have an extra burden. Students can internalise the grief that their parents felt and a common reaction seems to be the need to protect the parents from the child’s own grief about their disability.

Faye presented a year before her 21st birthday saying that she always felt sad before her birthday as she remembered the time when she had been born and she knew how hard it had been for her parents and that they did not get all of the compensation they had asked for (her disability was caused by a birth injury). However, she did not want her parents to know that she felt sad every birthday, so she kept that a secret and her aim was to be able to celebrate her 21st without feeling sad.

Access to adult relationships away from home and increased independence can lead to a new awareness of the potential limitations in the range of choices open to them in their future. Students present with jealously of their siblings whom they see achieve milestones, such as developing relationships, starting a career and living independently with relative ease. For some there is a painful dawning realisation that these normal goals may be harder or impossible for them to achieve. It can be challenging to care staff to hold and acknowledge this grief,
as some are the same age as the students and may not have experienced the disappointment of not always realising personal aspirations.

Ruth had come to college with a male student whom she was engaged to. Her fiancé was more disabled and needed more physical care then she did. Whilst at college she was excited to meet more males and started a relationship with an ambulant male student. She felt both guilty and excited at what she had done but was clear about her thinking. ‘I hate my bloody sister! It’s okay for her! She has her life sorted out! I want to have sex ‘cos I want a baby and my Mum doesn’t want me to but hy not?? My fiancé could never give me that and I want it! Why is it okay for my sister when she is younger than me?’

Another RR, which has a similar effect to ‘perfect care,’ is ‘overprotecting- overprotected’. Many students have parents who find it hard to see them as emerging adults and so infantilise them. For example, Emma’s mother put her in a nappy rather than in a sanitary towel when she was menstruating, as this was ‘easier’ for her mother to manage. Issues such as sexuality, relationships and forming an independent opinion can be particularly hard for parents to accommodate and may also pose a challenge for staff.

At the same time, students are often terrified to act without their parents’ consent and fear the responsibility that comes with independence. Wilberforce

(2006) suggested that in work with people who have LD there is always ambivalence around independence both for the  erson with LD and for their carers. It is not uncommon for students who are leaving college to sabotage their ‘new’ skills in order to remain protected and looked after. Many are articulate about their rights but less so about their responsibilities, which is perhaps unsurprising given the protective environments they have experienced.

College itself is also a protective environment and there exists a genuine tension between the declared and explicit goals of independence and the over protection implicit in providing levels of service which far exceed those typical of a community based independent lifestyle. Themes typical of our students that can be mapped onto this reciprocal role are ‘relating via medical issues or problems’ and ‘fear of independence’. Most students have had numerous medical consultations and a lifetime of social engagement based on their illness and diagnosis. Very few students have the social skill of conversing about issues that are not problem- or self-focussed, and some have little opportunity to experience themselves as anything other than ‘ill’ or ‘damaged.’ This socialisation style can lead to a dependency on their care-takers, as demonstrated by the film, ’Inside I’m Dancing’ (O’Donnell, 2005). It is common for the ‘first love’ to be a carer as care is the main intimacy that students have in their lives.

Tom, aged 19, wanted to have a girlfriend. He came to herapy asking to learn what he should say to someone and how to approach the dating game. After researching young people’s websites he was asked to roleplay the conversation he might have on a first date. ‘Well,’ he said, ‘I would say that I was born at 37 weeks and I was very ill and I almost died.’ Tom went on to list the operations he had had over his lifetime
and how he had overcome some of his physical limitations, seeing this as a way of engaging a potential partner.

The RR ‘perfectly caring-perfectly cared for’ is also present. Students have been taught that they are ‘special’ i.e. ‘special school’, ‘special needs’, and can continue to seek out care in order to make themselves feel special and loved. Shona aged 19 described how she felt about her transition from college.

‘I am scared that if I am independent I will lose having someone there telling me what to do every two minutes of the day!’ In her CAT therapy, Shona had a procedure of giving up on herself and pushing others’ help away if it meant changing her degree of dependency. By giving up on herself, she invited others to also give up on her, which confirmed her view that she was a ‘spastic cripple’. The aim in therapy was to enable her to view her capabilities realistically rather than to dismiss herself completely, because she could not walk.

Care workers in this area may also be attracted to the work for a variety of reasons, some by their need to be ‘perfect carers’. For example, when presented with a student who is ‘apparently upset’, staff may show a preference for asking about feelings rather than see some of the student’s behaviour as care seeking. Implementing a behavioural programme, which asks the staff not to give positive attention when the student is displaying ‘upset’ behaviour, but to give attention at other times, can then seem to be ‘punitive’ by preventing the staff from acting as ‘ideal carers’. Staff who do not keep to this plan can ‘split’ the team, to make themselves more ‘ideal’ in their care, without acknowledging that they may be reinforcing students’ unhelpful care seeking behaviours.

Students may also try to give perfect and ideal care to others, with the implicit goal of either denying their own grief and pain, or trying to get back perfect care. For some it seems that this pattern of caring for others may be a procedure that prevents them being seen to be a burden and a drain on their family and may also assuage feelings of ‘uselessness’. It may help them address their parents’ implicit grief by ‘looking after’ their emotional needs.

Many students act as ‘Agony Aunts’ to others but are unable to set clear boundaries and can end up being abused and bullied into caring for others’ needs rather than their own. The perfect care RR is often split with ‘rubbishing/ rejecting’.

Jasmine wanted a boyfriend but she was clear that she wanted one ‘like the man in the film ‘Notting Hill’, because, ‘he loves his wife and he cares for her.’

What Jasmine had not understood from the film was that this couple were grieving for the fact that they were unable to have children and that the woman had been able-bodied but became paralysed in an accident. To her and many of our students, physical care is the same as love. It is the minority who can articulate the boundary issues when combining personal care and a sexual love.

Alan was 22 and keen to have a girlfriend. ‘It isn’t that I have anything against people with a disability, it’s just that I would prefer an able-bodied girlfriend. You know? I just don’t want them to have to do my personal care ‘cos then it’s hard, you know, when it comes to sex, like.’

Joanne longed for a perfect relationship in which she would 'be seen as me, myself and not for the wheelchair.’

A percentage of the students are ‘looked after,’ and the question of why they were adopted can come into focus during their college years, when they may consider tracing their birth family. Painful feelings of rejection and abandonment may arise. Students either idealise their natural parents or react with anger and contempt to the fact that they were ‘given up’. Often they miss or choose to ignore the painful subjects of the circumstances of their birth and the fact that their disability might lead to greater care demands than those of a non-disabled child.

Some students have guilt, anger and grief at their lack of ‘perfection’ and these feelings of being flawed can be denied or set as challenges for the staff, most of whom are able bodied. It is accepted amongst the students that they can call each other names such as ‘cripple’ and ‘spastic,’ but they will not accept that kind of name calling from people outside of the campus.

Anthony had Spina Bifida and presented with lack of confidence about managing his relationship with his girlfriend. Reflecting on college life and his own adoption he said, ‘Everyone thinks that it is very positive here, but you see I am a cripple, and you and the rest of the staff here, they don’t like that word! But I am a cripple and I always will be!’

The RR ‘rubbishing/rejecting/abandoning to rubbished/ rejected/abandoned’ encapsulates many of these feelings and behaviours. Students can feel that they are ‘put away on the hill’ (the college is located just outside the town), rejected by their parents, or by friends and society. Often they have been ‘abandoned’ through parental separation or adoption, and these themes emerge in their interactions with others. They may rubbish and reject each other. There is a hierarchy of who is the ‘most cool’ and which disability is the least stigmatised amongst the students themselves. The staff teams can sometimes act out the split between ‘perfect care’ and ‘rubbished/rejected’.

Linked with an awareness of the positives inherent in independent living is the fear of the loss of protection this can involve. Those students who come from a mainstream setting may have been bullied at school and come to college fearing that attack. ‘Abusive bully-abused bullied’ is therefore an important RR to work with.

Whether they become ‘top dog’, behaving in a bullying way towards those who are more vulnerable than they are, or show low self-esteem and self-attacking, the internalised RR is the same. Students who have been bullied and made to feel negative about their difference may bully themselves by self-criticism and by dismissing their achievements. It follows that a common target problem with this group is ‘I don’t know how to accept myself the way that I am.’

Full Reference

Collins, S., 2006. 'Don't Dis' Me!' using CAT with Young People who have Physical and Learning Disabilities. Reformulation, Winter, pp.13-15.

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'Don't Dis' Me!' using CAT with Young People who have Physical and Learning Disabilities
Collins, S., 2006. 'Don't Dis' Me!' using CAT with Young People who have Physical and Learning Disabilities. Reformulation, Winter, pp.13-15.