As a doctor, I believe any medical therapy should begin with an agreement between the client and therapist to proceed down a track of therapy with full awareness of the advantages and disadvantages of the approach being taken, as well as alternatives options, without coercion. This process is formerly called voluntary informed consent and it is a cornerstone of good medical practice
Recently, I have been thinking about two issues that stammering pride and the social model pose around informed consent for stammering therapy.
First, the more down-to-earth question of what the informed consent process should look like if we recognise the social model and stammering pride as valid approaches for people who stammer to take.
Second, the more philosophical question of whether ‘voluntary’ informed consent for therapy by people who stammer is possible in a society that encourages people who stammer to see their way of speaking as inferior.
I tend to only think about fluency-improving therapy for adults as once I begin to add in more complex things, like children, psychological therapies and ‘costal breathing’ programmes, my brain starts to fizzle. But please as you go, if you think I am on to something, perhaps reflect on wider issues throughout stammering therapy it may bring up. I think there are a lot and would be interested to hear what you think.
What might the informed consent process look like if we recognise the social model and stammering pride as viable approaches?
Stammering pride places positive value on stammering as a natural form of human diversity that is of benefit to society. This makes any decision to take-away or change stammering a lot more important than under the medical model, which sees stammering as a defect to be fixed. Generally, in medicine, the more significant an intervention the more formality and time is placed on the consent process. For example, a surgical amputation would require written consent and perhaps one or two appointments to talk through the procedure, whereas for the taking of blood pressure, a few words and the out-stretch of an arm would suffice.
Having accessed stammering therapy myself, my experience is stammering exists somewhere in the middle of this continuum. There is a conversation, but rarely a formal, clear discussion of pros and cons and alternatives, and very rarely is there a signed consent form documenting these. I suggest, in-keeping with the concept of stammering pride, that the negotiation of stammering therapy should perhaps sit nearer the surgical end of the spectrum, requiring written consent and more time spent on negotiating the decision-making process.
Stammering pride asks us to acknowledge that fluency-enhancing therapy involves changing the nature of how someone speaks, and thus their unique identity and personal aesthetic. As such, it asks us to acknowledge the potential invasiveness of therapy that affects how a person speaks.
It is interesting to compare the negotiation of stammering therapy with the informed consent process for cochlear implantation that can provide a ‘cure for deafness’. The consent process for this has undergone much more scrutiny. This is in part due to the prominence of social model thinking within Deaf communities and ‘Deaf culture’. There have been calls for the informed consent process to involve discussion of the linguistic and cultural characteristics of Deaf people, and access to the testimony of Deaf individuals, to highlight the viability of a ‘Deaf life’ (1,2). The major decision to move away from one way of life to another without a disabled identity is given appropriate weight.
If stammering therapists genuinely want to give value to the stammering pride movement then, like the decision for cochlear implants, I believe they should discuss concepts of stammering ‘identity’ and ‘pride’ before consenting a person who stammers to therapy that changes how they speak (3). The decision to change a speech pattern should have real weight. The option of living life as a person who stammers I think should be put forward as a valid alternative. People who stammer should be counselled on the potential side-effects of fluency-enhancing therapy, in particular the loss or reduction of ‘stammering gain’ (4). Furthermore, people who stammer perhaps could be given a chance to meet or interact with a person who has declined or no longer uses fluency-enhancing techniques to provide a real-life example of this approach.
I recognise this idealised ‘informed consent’ is much easier written down than provided in a busy clinical setting. And that my use of surgery is in some ways a poor analogy: you can’t put a leg back on once it is off, but a person who stammers can change their mind and go back to how they previously spoke. There is much nuance to stammering therapy.
Nevertheless, the central point stands. I believe if we value the social model and stammering pride, we need to approach the decision to have therapy with more gravity and ensure we do not provide a token informed consent process in favour of having therapy.
Indeed, a more open and thorough consent process for therapy which involves discussion of stammering pride and social model principles canin itself be therapeutic, or at least eye opening, to the person who stammers. This way of thinking about stammering is rarely considered in daily life: its introduction may begin to arouse new insights and understandings of stammering.
Is voluntary consent possible in a society stigmatised against stammering?
Valid informed consent is given freely and not under any duress or outside influence. It could be argued that people who stammer often make the decision to have stammering therapy under duress, because society penalises their way of speaking.
Societies throughout the world have been shown to stigmatise people who stammer. People who stammer can be held back in education and the workplace because of how they speak (5,6). Research has shown this stigma can be internalised by people who stammer so they come to see their own way of speaking as inferior (7) . It is, therefore, no surprise that there is a drive in many people who stammer to have therapy, but is this really a ‘voluntary’ decision?
Who is making the decision to have therapy: the person who stammers or society? Can people who stammer ever give valid consent for treatment of their stammer in these societal circumstances?
These are just two of the genuine and difficult questions the social model and stammering pride movement raise about the current process of informed consent. They represent the tip of an iceberg; for example, what about the consent process for children who stammer or those who lack the capacity to make their own decisions? Should private stammering therapy programmes, such as those run for costal-breathing approaches, also look to obtain more thorough informed consent before accepting people on to their program?
There is much I think we need to start thinking, talking and writing about.
Patrick Campbell
Acknowledgements
I would like to thank Kathryn Bond, Sam Simpson and Christopher Constantino for their feedback on this blog post.
References
- Hyde M, Power D. Some ethical dimensions of cochlear implantation for deaf children and their families. J Deaf Stud Deaf Educ. 2006 Winter; 11(1):102–11.
- Pass L, Graber AD. Informed Consent, Deaf Culture, and Cochlear Implants. J Clin Ethics. 2015 Autumn; 26(3):219–30.
- St Pierre J, Schick E, Richter Z. Did I Stutter [Internet]. [cited 2018]. Available from: https://www.didistutter.org
- Constantino C. Stuttering Gain. International Stuttering Association Online Conference 2016; Available from: http://isad.isastutter.org/isad-2016/papers-presented-by-2016/stories-and-experiences-with-stuttering-by-pws/stuttering-gain-christopher-constantino/
- Butler C. “University?… hell no!”: Stammering through education. Int J Educ Res. 2013; 59:57–65.
- Butler C. Wanted – straight talkers: stammering and aesthetic labour. Work Employ Soc. 2014; 28(5):718–34.
- Boyle MP. Identifying correlates of self-stigma in adults who stutter: Further establishing the construct validity of the Self-Stigma of Stuttering Scale (4S). J Fluency Disord. 2015 Mar; 43:17–27.