Opinion: "See a psychologist? Why would I do that?"

I am a parent of a child who has severe impairments. Parents of children with impairments are members of an oppressed group. A survey by the charity Contact a Family, found 'Families with disabled children in the UK feel stigmatised and shut out from society' (Contact a Family, 2009). As recently reported in Canada, by the Ottawa Hospital Research Institute (2011), the challenges shouldered by families of children with disabilities can be associated with 'an increase in a wide variety of both physical and psychological health concerns' (p.3). Parents of children with impairments could be supported by therapeutic interventions, but generally speaking, they choose not to have counselling (Daggett, 2010). Counselling can even be seen by some as another source of oppression (Reeve, 2002). Is this a problem for the therapeutic community as well as for parents of children with impairments?

A strong reaction

At the age of nine months my son suffered an undiagnosed neurological event that left him with severe learning difficulties and global developmental delay. After the initial distress of the event came the introduction to the world of 'disability'.

My realisation that the world had changed for me started with a strong reaction I experienced to a road sign which warned of 'Disabled Riders'. I wanted to smash this sign down and throw it in the ditch. My reaction was perplexing and alarming, and it occurred at one of the most enjoyable times of my week; taking my three-year-old son to the riding stables. Here he was lucky enough to be able to take part in a scheme for children with impairments to experience horse riding. He loved the riding, he quickly learned to balance himself better, and I looked forward to chatting with other parents in a situation where we could hand our children over to someone else, a precious 20 minutes. There was an atmosphere of acceptance, where 'disability' was irrelevant. Those differences which set each of us apart from others in everyday life were, at the stables, the commonalities of the parental experience of disability.

As a counsellor, I was intrigued to find out what was behind my strong reaction to that sign. I had recently embarked upon a master's course in counselling, and I used my opportunity to undertake research to reflect on my own experiences and look into those of other parents of children with impairments. The study involved the analysis of interviews with three other parents, and a Portage worker. The Portage service is an educational intervention available by choice to families with preschool children with disabilities. Originally it was a project to support the development of young children with disabilities begun in Portage, Wisconsin, and then funded by the US Department of Education in 1969. It is a relationship-based intervention which is family-centred, ecological and strength-based.

In the counsellor training process I had benefited from being able to talk to a therapist about the changes in my life and I wondered how other parents found emotional support.

A shocking revelation

It was a shocking revelation in my introduction to the world of disability to find, through listening to other parents, that the major source of distress is not that your own child has impairments, but the way people respond to you and your family. Parents reported being reduced to tears by the looks of strangers. And not just looks: one of my research participants reported 'Can't you shut her up?', and my family have experienced 'You shouldn't let him do that!' (rocking movements) in the supermarket.

Reflecting on the accounts of toxicity in social interactions experienced by other parents I talked with, I recalled Goffman's (1968) work on stigma. Goffman begins to address the puzzlement experienced by parents of impaired children when they find people are suddenly treating them differently, and he indicates how the stigma of disability spreads outwards from the disabled individual:
…the loyal spouse of the mental patient, the daughter of the ex-con, the parent of the cripple, the friend of the blind, the family of the hangman are all obliged to share some of the discredit of the stigmatised person to whom they are related. (p.43) 

He writes too how our prejudices turn against us, which is relevant to my 'road sign' experience,
The painfulness, then, of sudden stigmatisation can come not from the individual's confusion about his identity, but from his knowing too well what he has become. (p.158) 

The shock is the revelation of one's own knowledge of the discourse of prejudice. The stigmatisation of families with children with impairments involves the representation of them as 'others' who are grouped 'as the objects of experiences rather than as fellow subjects of experience' (Ryan & Runswick-Cole, 2008). Suddenly, on seeing the road sign, I was one of 'us' and one of 'them' simultaneously.

However, Gadamer offers hope by claiming that 'all understanding arises only in and through our prejudices' (in Moran, 2000, p.278). The pain felt through one's own knowledge of previously being on the other side of prejudice, becomes a route to understanding. Here he points to the potential importance of therapy for people in this group. Others (e.g. Watermeyer & Swartz, 2008) have argued that it is important for people within the field of disability to share their subjective experiences; that their voices should not be silenced after being on the receiving end of other people's projected fears.Whereas I had found a therapeutic space useful to me in coping with the dramatic upheaval in our family life, other parents I talked with in my study did not see therapy as a useful choice. Where counselling had been offered to parents, they had all instinctively rejected it. It was beyond the scope of my study to explore why parents in this group chose not to have therapy; my hypothesis would include an argument that therapy, if perceived as being aligned with a medical view of the individual, raises fears of oppression rather than support. It is the 'social model of disability' that has conceptualised this notion of oppression.

The social model of disability

In this view, disability is a creation of the social and political world. Mike Oliver, writing in 1992, has argued that 'disability is socially produced' (p.101). Experiences of impairment are not the same across different social settings. Schuengel et al. (2009) looked at parents' reactions to receiving a diagnosis for their child of cerebral palsy and reported finding that:

Stress of parents of children with disabilities has been found associated with unequal access to social security, benefits, and educational and vocational opportunities… (p.678) 

Comparing parental distress in the Netherlands and the USA, they found higher rates of stress in the USA, where people were very much dependent on family circumstances. In the Netherlands, where there was a uniform system of compulsory healthcare insurance and benefits, Dutch parents had more confidence in the future of their child and stress rates were lower.

Informal social interactions also create the concept of 'disability'. It might not be the impairment that stops a disabled child going to restaurants, supermarkets, play areas, but, rather, other people's responses. As Dowling and Dolan (2001) put it, 'the child does not handicap the family – society does' (p.22).  

The social model view suggests that the situation can only be improved by people working together, campaigning, arguing, battling, to improve their lot, with people who have an insider's understanding of the issue – in Goffman's term, 'the wise' (1968, p.41). Are therapists instinctively seen by parents of children with impairments as being outsiders, the 'unwise'? It seems possible that therapists, whether they be counsellors or psychologists, are seen as being closely associated with the medical profession, and are perhaps perceived as a source of oppression, as Reeve (2002) has suggested. This view is borne out by one parent and her response to a concerned doctor's advice: The doctor suggested I might want to go and 'talk to someone'. Why would I do that?

The reports of most distressing experiences arose from parents' interactions with established organisations: the medical profession, the church and the law. One participant recalled the day her son's visual impairment was diagnosed; the doctor told her in a corridor with the words:
'Your son is blind and would you mind if my colleagues have a look because it is quite an unusual condition?' …he was just an eye to them… and I was so in shock with the news, I can feel it now, I am still furious. 

This is an example of people being treated 'as material possessions to be maintained, exploited and traded' (Marks, 1999, p.64).
Lucy (note: all participant names are pseudonyms) attended a Bible study meeting and found that the discussion turned to the 'sins of the fathers' being passed on to their sons. As Lucy reported it:
Do they think my children are evil? Do they think my children and cursed?… And I was absolutely devastated...

When Susan talked to a psychologist about the upsetting experience of having people stare at her when her son became agitated in public, the psychologist had suggested avoiding difficult situations and not going out as a solution to the problem:
…you don't want to live in this little bubble do you?… I guarantee that once a day they'll be a lump there and I must learn to speak up I think and say something but…I think 'Why should I have to, why is someone judging this child, why should I have to speak up?' You know… 

In order to receive entitlements through the Disability Living Allowance scheme, parents are required to write objectively about their child's condition. Some parents put off applying because the process is so distressing. Marks (1999) has written: 'The DLA form thus functions as an expression of power… Citizens are presented with an idealised image of human existence… In this way, the disabled person is made responsible for their condition' (p.75). Here then, are the instruments of oppression, handed to the oppressed to turn on themselves.

Representations of impairment, together with the evaluation of them which creates the notion of disability,
are drawn from established historical discourses of medical science, religion and economics. These discourses supply a reservoir of images and language which parents of children with impairments encounter in formal and informal social interactions.

Psychoanalysis

Where the social model describes the mechanisms of oppression, the domain of psychoanalysis provides an explanation for the force of hurt felt by parents in their interactions in the social world. Stephen Frosh once told me '"disability" is a kind of carrier of projections and is subjected to many of the same dynamics as racism', and Sinason (1992) has written clearly on this point, stating that there is 'The external death wish – "I wish you had never been born" and its companion murder threat – "You should not be alive now"' (p.38). Parents' accounts included evidence of this; 'I felt my father enjoyed punishing him'. The Portage worker, Abby, also found behaviours which perhaps spring from unconscious fears:
…people's reactions are peculiar. Another family I am working with at the moment, she's had a lot of, almost people moving away from her child, as if it is catching, and I think that must be awful.

The psychoanalytic perspective points to how common it might be to engage in oppressing the impaired through the unconscious expression of our fears. Watermeyer (2009) has written how unconscious projections lead to 'the imperative to silencing the subjective experience of disabled life' (p.2).

Oppression is complete when it becomes internalised, when parents accept the definitions of them by others and set aside their subjectivity, and there were signs of this in the interviews where parents try to accommodate the offending person. The need then, is to recover one's sense of self, through introspection, after being on the receiving end of other people's projected fears, and having 'personal and psychic boundaries' disrupted (Watermeyer & Shwartz, 2008, p.601). Jayne gave an example of this, talking about an incident with her son, who is visually impaired:
(There was a non-uniform day at school and) I had sent him in uniform by accident and one of my friends said, 'Oh well it doesn't matter, he can't see'… It's stuff like that that stays with you for ever… it is just other people: that is the hardest thing I think – their ineptness…'

Jayne's response was to see her 'friend' as clumsy, allowing a degree of internalisation of the oppressive view. Perhaps we see in other people's prejudices a recognition of our own; a recognition which allows the hurtful remark to go unchallenged.

What can therapists learn?

Parents I spoke to supported previous findings (e.g. Beresford, 1994) concerning Portage as a valuable source of emotional support. The service is a manifestation of humanistic values, influenced by the work of Carl Rogers (1961) on person-centred approaches to psychological and educational interventions. The Portage relationship explicitly addresses the issue of power, and offers a counter-medical stance in terms of seeing the child and the family in a holistic way and prioritising choice and the autonomy of the family.

In Canada there are signs that a move towards family-based interventions in work with children with impairments, explicitly addressing the issue of power in relationships with professionals, is taking place (e.g. Ottawa Hospital Research Institute, 2011, p.5). I think that the therapy aversion of parents of children with impairments represents a significant challenge to therapists who are in a position to support this group. Clearly what is currently on offer to parents can be perceived as unhelpful, where a potentially harmful power dynamic is anticipated. How might psychologists in the UK, from across the broad range of subdivisions, approach this issue of an emotionally vulnerable group which instinctively turns away from accessing professional support?

Conclusion

Non-impaired parents of children with impairments are thrust into the world of disability and suddenly find themselves subjected to oppressive social interactions in almost all areas of their lives. I found in my study in England what Bjarnason (2002) had found in Iceland; that parents 'had struggled with professionals, the public health system, the social welfare system or the schools on their child's behalf' (p.315). Under massive emotional strains, parents experience everyday life as a series of battles and are sometimes offered opportunities to talk with a psychologist or a counsellor, yet the parents I spoke to in my research chose not to have therapy. Yet, Watermeyer and Swartz (2008) have pointed out how important it might be for people in the world of disability to engage in introspection. Perhaps it is even more relevant for those thrust suddenly into the world of disability to reflect upon their own assumptions about disability, to understand what disability means to them?

I had been on a counselling training course at the time and had found the opportunity to talk about my feelings with a therapist of great help. I am not sure I would have chosen to have therapy if I had not already got a background in psychology (I am a graduate member of the BPS) and counselling. This is an unsatisfactory situation for parents and a problem for therapists as they are seen as unhelpful and even a threat.

Parents of children with impairments often find emotional support by talking not to a therapist, but to their workers from the Portage service, where the relationship is characterised by an emphasis on the autonomy of family members. In a Family-centred service approach, which recognises that each family is unique, the family are seen as the experts on the child's abilities and needs; the strengths and needs of all family members are considered. Empathic ways of relating which celebrate subjectivity and common humanity can restore a sense of self. In the face of rejection of therapy by this group, how can psychologists respond in ways that would be welcomed by parents of children with impairments?

References

Beresford, B. (1994). Positively parents, Caring for a severely disabled child. London, HMSO.
Bjarnason, D.S. (2002). New voices in Iceland. Parents and adult children: juggling supports and choices in time and space. Disability & Society, 17, 307–326.
Contact a Family (2009) Our family, our future. London: Author. Available via tinyurl.com/3efaonw
Daggett, P. (2010). The experiences of parents of children who have impairments – A multi–perspective analysis. Unpublished master's dissertation, University of York St John.
Dowling, M. & Dolan, L. (2001). Families with children with disabilities – Inequalities and the social model. Disability & Society, 16, 21–35.
Goffman, E. (1968). Stigma. London: Penguin.
Marks, D. (1999). Disability, controversial debates and psychological perspectives. London: Routledge.
Moran, D. (2000). Introduction to phenomenology. London: Routledge.
Oliver, M. (1992). Changing the social relations of research production. Disability, Handicap and Society, 7, 101–114.
Ottawa Hospital Research Institute (2011). The health of families of children with disabilities: Report from a national roundtable. Ottawa: Author. Available at tinyurl.com/3u3bsdy
Reeve, D. (2002) Oppression within the counselling room. Counselling and Psychotherapy Research, 2(1) 11–19.
Rogers, C.R. (1961). On becoming a person. London: Constable.
Ryan, S. & Runswick-Cole, K. (2008). Repositioning mothers: Mothers, disabled children and disability studies. Disability & Society, 23, 199–210.
Schuengel, C., Rentinck, I.C.M., Stolk, J. et al. (2009). Parents' reactions to the diagnosis of cerebral palsy. Child: Health, Care and Development, 35, 673–680.
Sinason, V. (1992). Mental handicap and the human condition. London: Free Association Press.
Watermeyer, B.P. (2009). Disability, discrimination and subjectivity. Unpublished doctoral thesis, University of Stellenbosch, S.A.
Watermeyer, B. & Swartz L. (2008). Conceptualising the psycho-emotional aspects of disability and impairment. Disability & Society, 23, 599–661.