Articles

A social model of stammering - Issue 13, Spring 2000
by Sam Simpson and Carolyn Cheasman
One of the us (Carolyn) has worked in the field of stammering within adult education ever since qualifying, while the other (Sam), works predominantly in neurology-rehabilitation within the NHS (while running groups for adults who stammer at the City Lit in addition). In our opinion there are areas of similarity between these clinical areas - notably the hidden nature of the impairment. However, interestingly there is little cross-fertilisation regarding developments in either field. In this article we will consider how developments within the disability movement and sociology are influencing aphasia therapy in important ways while in contrast they have not had an impact on stammering therapy.
  This fact was confirmed for us at the 1999 Oxford Dysfluency Conference during the talks we heard and also through conversations with other therapists. It was one such conversation that prompted us to write this article. Also, increasing awareness of disability issues through the staged phasing in of the Disability Discrimination Act is starting to impact on work in both the NHS and adult education.
  We are in the early stages of thinking about these issues and this article is a collection of our current thoughts and reflections. This is the first time we have committed these ideas to paper. Our intention is to share them and open up a debate.
Developments in the disability movement
Discussing stammering in the context of disability remains highly controversial (while this is now much more commonplace in the field of acquired neurological disorders). However, we believe it is productive to explore key developments in the disability discourse in relation to stammering, without necessarily taking a definitive view on whether stammering is a disability. In line with the 'International Classification of Impairments, Activities and Participation' (1999), we define 'impairment' as 'a loss or abnormality of a body part (i.e. structure) or body function (i.e. physiological or psychological function)'. However, with regard to the term disability,  there are a number of alternative definitions.
Models of disability
Our understanding of disability is influenced by a number of prevailing models which are based on widely differing assumptions. Recent developments in the disability discourse have brought to light new ways of thinking about the causes and nature of disability. The most recent and radical of these is the 'social model' which contrasts with the 'personal tragedy' and 'medical/therapeutic' models. The personal tragedy model suggests that disability is some terrible chance event that occurs at random to 'unfortunate', 'helpless' individuals. It is the model that many charities initially employed as a means of invoking public support. In contrast, the medical model views disability in terms of the individual's inability to function normally and to thus carry out everyday activities. The social model is radical in that it moves away from viewing disability in terms of individual limitations and inabilities, instead placing its main emphasis on the different barriers and obstacles that prevent people with impairments from participating fully in society. These barriers are largely external (e.g. attitudinal, physical and organisational obstacles created by society). However, there are also internal barriers such as internal attitudes and beliefs. There is a reinforcing interplay between these external and internal barriers.
  One of the main tenets of the social model is the concept of a personal and a political disabled identity (Peters, 1996). The initial quest for a predominantly political identity (i.e. disability viewed through the lenses of social injustice and societal oppression) has been followed by a recognition of the 'need for disabled people to re-define themselves as individuals and validate their personal biographies of unique lived experiences in multiple communities' (Peters, 1996). This is important as it leads to a re-definition of 'disabled' and 'non-disabled' as being equal but different - with a need to embrace these differences positively. Thus, the social model of disability has precipitated a shift towards the empowerment of disabled people through the development of a robust disabled identity and self-advocacy.
The influence of sociology
Current trends in the sociology of illness have highlighted the importance of using evidence-based research in order to explore 'insider' accounts of living with a disability. 'It is no longer good enough for researchers to look within their own narrow understandings in their attempts to predict the outcomes of others. Before we can even begin to predict what people do, we need to gain a better understanding about why people do what they do, based upon their understandings of their actions' (Stainton Rogers, 1991). Furthermore, it has been shown that in order to study the experience of disability we must focus on the meaning people attribute to their experience and how they make sense of what is happening to them and their bodies (Conrad, 1990). The concept of 'narrative' has gained increasing importance within sociology as a means of understanding people's attempts to deal with their life situations and above all, with the changes in identity brought about by disability. According to Kleinman (1988) the narrative is the medium through which people shape and give voice to their suffering. Frank (1995) has also shown how narratives not only articulate suffering, but also give the person a voice for articulating the illness experience.
  Whilst we do not equate stammering with illness, stammering is nevertheless not a transitory phenomenon for many people. We would stress the value  of giving people a voice to tell their personal stories, through which they can define the lived experience from within, as opposed to emphasising the professional or 'outsider' perspective. Encouraging people to tell their personal stories has therapeutic benefit in giving people an opportunity to shape their account. It also offers a means of challenging received wisdom and generating new hypotheses (Greenhalgh and Hurwitz, 1998).
Attitudinal barriers in relation to stammering
Many people who stammer report experience of society's disabling attitudes which may manifest in a variety of ways. Overtly these attitudes include lack of equality of opportunity in the workplace and teasing or bullying at school. At a more subtle level we see how stammering is portrayed in the media (e.g. it has been associated with criminal characters in 'Prime Suspect' and 'Cracker' or used as a vehicle for comedy in 'A Fish Called Wanda' and 'Open All Hours'). Barnes (1994) notes that, in addition to portrayals of disabled people as a source of amusement, historically there has been a frequent association between impairment and evil in literature and the media. He says the negative implications of these images should not be underestimated and that such portrayals would be more acceptable if they were offset against those of a more positive nature. In our attempts to be therapeutic we may encourage clients to gather evidence that not everyone does view stammering negatively (e.g. through sending people out to do street surveys on the public's attitudes to stammering). Though doing this with good and valid intentions, are we not at the same time implicitly denying an important and real aspect of our clients' experience? A consequence of clients not being given the space to voice their personal experience of discrimination is that there is no room for them to join together as a collective and challenge these prevailing negative attitudes. There is no space for the personal to become political (Peters 1996).
  Continuing the theme of discrimination, the social model of disability highlights the oppression that occurs through language which may be subtly or blatantly discriminatory. In other fields of speech and language therapy the use of labels to define clients appears to be being challenged more than in the area of stammering - where the terms 'stammerer' and 'stutterer' are still often heard. Furthermore, whilst many therapists may say 'people who stammer' there is a more subtle discriminatory use of language to be seen, such as referring to people who stammer as 'afflicted', 'brave', 'courageous' or 'unfortunate'. We recognise, as we write, that we are not exempt from using some of these descriptors. However, we are becoming aware that using such terms says more about our value judgements than the experience of stammering. There is clearly a link between such terminology and the tragic hero model of disability. At the Oxford Dysfluency Conference one of the keynote speakers described a client as having an 'appaling' stammer. We were struck by this and by how acceptable and unremarkable it seemed to be at such a prestigious conference. In the  parallel field of aphasiology it seems much less likely that someone would be referred to as having an 'appaling' or 'bad' aphasia. Without wanting to be overly PC, it  seems to us that the apparently innocuous use of such language has major implications for the way stammering itself and successful outcomes in therapy are viewed by professionals. One obvious implication here is that stammering is a 'condition' that needs to shaped, normalised or removed. This throws up the issue of just how challenging it is to really embrace and accept difference.
Conflicts and dilemmas
The above discussion highlights an interesting conflict. Whilst superficially the medical model and the search for a 'cure' has largely been rejected within the field of stammering therapy, it would appear that fundamentally we are still working within a 'normalisation' model. After all, our training has been heavily influenced by the medical model and this is what most of our clients are expecting from therapy. In Block Modification therapy there is an overt message about working towards acceptance of stammering, but does the emphasis  placed on modification not give out another implicit message -  possibly one that says it is important to sound as 'normal' as possible. Through teaching people not to stammer or to stammer less are we colluding with society's belief that difference is not OK?
  In stammering therapy,  working on acceptance of stammering can actually be a means to an end (i.e. as a person becomes more accepting of their stammer they can become more fluent). This would seem to be a further barrier to working on acceptance of stammering as an end in itself.  
  In contemplating why some of the above ideas have become more readily accepted in the field of acquired communication disability than in stammering we offer two theories.
  One relates to the fact that there is a less clear organic cause in stammering, with most therapists believing there is a large psychological component which needs to be considered. In addition there is often considerable variation in terms of the frequency and severity of stammering and this feeds the idea that it is possible to 'remediate' it. Furthermore, nearly everyone who stammers is fluent some of the time. All of these factors make it harder for clients and therapists alike to become more fully involved in the disability movement and to embrace difference positively.
  Our second theory relates to the term 'disability'. Following a neurological insult people more often come to a point of seeing themselves as having a disability. There is, of course, also the possibility of additional physical impairment which contributes to a re-definition of the self-identity. As the notion of disability has become more accepted in neurology-rehabilitation, the fields of aphasia therapy and research have begun to move towards developing alternative accounts of the experience of living with a communication disability. This re-definition of a personal disabled identity by people with aphasia is challenging traditional definitions in line with other sections of the disability movement. This has had empowering consequences for those involved (Simpson, 1999).
Closing thoughts
We end by offering some final thoughts and questions. First of all, we would like to ask two questions:
-    what would it mean to the way we work if we were to fully embrace the concept of acceptance of stammering?
-    what therapy would people who stammer want if we lived in a society that embraced and positively valued difference?
  It seems clear that society's negative attitude towards anything that does not conform to the majority serves as a barrier to people who stammer accepting their difference. Consequently, something like self-advocacy groups could offer people who stammer an opportunity to develop an alternative account of their experience. Their collective voice could then challenge commonly held discriminatory beliefs. In exploring this area it may helpful to look beyond the speech and language therapy, psychology and counselling literature and consider what is currently being written in the fields of disability and sociology.
  We are not trying to supplant traditional therapy approaches which clearly have a lot to offer. However, don't we need to offer an adjunct to these for those with experience of traditional therapy who are more interested in challenging society's values?
  Finally, in writing this article we are aware of the controversial nature of some of the points we have made. We are exploring these issues ourselves and would ask that you remain open whatever your stance on stammering and disability. We would be interested in any feedback and can be contacted at the City Lit by post or by e-mail.
  A self-advocacy group is scheduled to run at the City Lit from October 2000 - so watch this space!
References
Barnes C. 1994. Images of disability in On equal terms: Working with disabled people. French S. (ed) Butterworth-Heineman Ltd
Conrad P. 1990 Qualitative research on chronic illness: a commentary on method and conceptual design. Soc. Sci Med., 30 (11), 1257-1263
Corker M. and French S. (eds) 1999. Disability Discourse. Open University Press
Frank A. 1995. The wounded storyteller: body, illness and ethics.
The University of Chicago Press
Greenhalgh T. and Hurwitz B.    
Why study narratives? in Narrative based medicine: dialogue and discourse in clinical practice. Greenhalgh T. and Hurwitz B. (eds). BMJ Books
Kleinman A. 1988. The illness narratives: Suffering, healing and the human condition. Basic Books, Harper Collins
Peters S. 1996. The politics of disability identity in Disability and society: emerging issues and insights. Barton L. (ed). Longman
Pound C., Parr S., Linsay J. and Woolf C. 2000. Beyond aphasia: therapies for living with communication disability. Winslow Press
Simpson S. 1999. Making sense of aphasia and disability: the impact of aphasia on self and identity and factors influencing the reconstruction process. Unpublished MSc
Stainton Rogers W. 1991. Explaining health and illness: an exploration of diversity. Sage Publications Ltd
Swain J., Finkelstein V. 1993. Disabling barriers - enabling environments. French S. and Oliver M. Sage Publications Ltd