There's been a lot of talk about the 'social model of disability' recently, with some saying it should replace the 'medical model' for stammering therapy. In this article, speech & language therapist Stephanie Burgess argues that adherence to one over the other is damaging.
I was inspired to write this piece after seeing a tweet by disability journalist Laura Elliott, which said, "...I see we're discussing medical vs. social model of disability again, & imo (in my opinion) the absolutist adherence to either is what's damaging" (link to full thread here, shared with the author's permission.)
The debate about the medical versus social model of disability (see here for descriptions of both) has been going on for a while within the world of stammering therapy and this tweet really chimed with me, as I do feel there has been an unhelpful shift towards a 'social model good – medical model bad' scenario, which leads to the suggestion that speech & language therapists (SLTs) may be causing damage through an unhealthy adherence to the medical model.
Most stammering therapists are already acutely aware of the potential for causing damage with the people they work with, and I think it's why a lot of SLTs steer well clear of working in the area!
I do feel there has been an unhelpful shift towards a 'social model good – medical model bad' scenario.
Laura writes, "You have to figure out which bit of your suffering is internal, and caused by your impairment itself, and which suffering is external, and caused by an unequal society." Although she's not referring specifically to stammering, I feel that the same thought process allows people who stammer to make informed choices about the direction they choose to take with their therapy.
Twitter trolldom & raising awareness
There is no doubt whatsoever that many of the problems faced by people who stammer are societal. This was brought home to me only too well when I recently dipped my toe into the murky waters of Twitter trolldom. A polite request on my part to someone with 40,000 followers not to use the word stammering as an insult because of the potential for reinforcing the stigma around stammering was met with a barrage of abuse. The bile, disrespect and mansplaining I experienced were alarming (if predictable, since this is Twitter), but what really concerned me was the lack of understanding and, more disturbingly, lack of tolerance towards stammering shown by many of those expressing their views, which just reinforced my determination to continue speaking out.
I am not alone in this among SLTs. Most therapists working in the area of stammering see it as their role to provide education about stammering and to support their clients to develop their self-advocacy skills and take on that educator role as well. I work with an amazing group of specialist therapists across the Yorkshire and Humber region, and members of our group have done all kinds of incredible activities to get the word out and raise awareness about stammering in a positive way. Here are some examples:
- Writing plays, such as Unspoken
- Producing animations like My Stammering Tap
- Organising art events, eg Hear in Hull
- Speaking on Radio 4's The Listening Project
- Providing training to NHS reception staff.
These are on top of things many of us do as part of our everyday clinical practice, such as training teachers, presenting school assemblies, facilitating self-help groups, providing information for people to share with employers and colleagues and encouraging clients to share their stories at school, at work and in the media.
When the social model is not enough
SLTs have been doing similar things for many years to provide education and promote societal acceptance of stammering. However, and here we come back to Laura's tweet, sometimes the problem of stammering is caused by the stammer itself. I believe there are times when applying the social model of disability to our decision-making in therapy is not enough. I'd like to share the story of a young child I've been seeing over the last year as one example of why I think that. Imogen's mum, Kate, has given permission to share her story.
Imogen attended our drop-in clinic in January 2019, aged 2 years 7 months. She started stammering a couple of months earlier, and was occasionally withdrawing from communication and saying, "I can't talk."
Imogen's parents and grandparents attended information sessions and I visited her nursery and provided training to nursery staff in how to support Imogen. In all of these sessions, the main message we reinforce is that it's OK to stammer. We talk about how important it is not to inadvertently give the child negative messages about the stammer, e.g. by saying, "Their stammer is really bad today."
Sometimes the problem of stammering IS caused by the stammer itself.
Kate told me she was acknowledging the stammer when it happened, rather than just ignoring it, and felt this was helping. We agreed to keep in touch by phone to monitor progress. With many of the children we work with, this 'hands off' approach would be all that's needed.
However, that November Kate rang to say they had seen a noticeable decline in Imogen's fluency, but more importantly, her frustration had increased and her talking had reduced. Imogen would sometimes say, "Mummy, I can't say it", or "You say it." Kate told me she tried to talk with her about it, but Imogen didn't really want to. We agreed it would be appropriate to meet again with Imogen to see if there were any strategies which would help to reduce her frustration. Kate told me that at one point she was talking more slowly and that definitely seemed to help.
In December, I saw Imogen in clinic. We played with some toy animals, and Imogen helped me to sort them into fast and slow animals. We had some fun together talking like the toys, and I showed Imogen how she could try and talk slowly and smoothly, eg like the slug, so that her words don't bump. I didn't feel that Imogen engaged very well with the activity, but Kate agreed to talk through it with her again at home.
Next February I called Kate to see how things were going. She told me that over Christmas the stammer was barely noticeable. She felt that Imogen had definitely learnt to control her speech. When she started to stammer, she stopped and took a moment and then said it more slowly. She and Kate had been talking about the slow animals, and Imogen said it helps when she thinks about them. The best news is that Kate told me that she is very, very chatty at the moment! We will continue to keep in touch until Imogen's parents are happy they no longer need our support.
No 'one-size-fits-all' approach
Proponents of the social model might argue that Imogen's frustration around talking came from her having internalised society's attitudes towards stammering or from being treated or judged differently because of stammering, but I simply don't believe that was the case with this articulate little girl. She knew her words were getting stuck and she wasn't able to say what she wanted. That was what was causing her frustration. Having supportive and understanding people around her will help Imogen in the long term if she continues to stammer, but using a more medical model approach of helping her to 'fix' the problem herself is definitely also one of the things which is helping her right now. So she can get on with the important business of being a three-year-old – playing, making friends and learning.
This is one of the reasons stammering therapy is so difficult and requires specialist therapists with expertise in the area, because there is no 'one size fits all approach, and getting it wrong is a scary possibility.
I believe we also need to get away from this polarising debate...we have to let ourselves be guided by the situation of each family we work with.
One of the hardest things to manage when working with children who stammer is how to validate the completely understandable anxieties of parents who are hoping for the 'fix' which a medical model would provide (and sometimes it does), at the same time as transmitting the message that what will help their child the most in the long term is for them to accept the stammering. It's a real dilemma which I don’t claim to have the answer to, but I believe we have to let ourselves be guided by the situation of each family we work with.
It's been hugely important that we have this debate within the profession, and I applaud those people who have been making the argument that we need to move away from a 'stammering is something to be fixed' standpoint. However, I believe we also need to get away from this polarising social versus medical model debate. The suggestion that the medical model is the wrong one to use when working with stammering could be interpreted as a suggestion that we shouldn't be 'treating' individuals at all, thus denying their right to choose what their own therapy journey should look like, whether that entails accepting their stammer (social model) or trying to control their stammer (medical model) or a mixture of both depending on the situation – one does not preclude the other.
As therapists, I believe the only framework we should be working within is the one in which the individual we're working with lives. Their unique experience, expert knowledge and goals and wishes should be what inform our decisions and practice.
Stephanie is a speech & language therapist, with a specialist in stammering, at Airedale NHS Foundation Trust. This is an abridged version of Stephanie's article 'Medical vs. social model of disability — the absolutist adherence to either is what's damaging', which you can read in full here.
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