I had the privilege to be invited by British Stammering Association to the Stammering Network at Speaker’s House at House of Commons last week.
My connection with speech and language is both professional and personal. As the parent of a young person with significant literacy and communication needs the role and importance of speech and language therapy is personally close to my heart. As Founder of The Communication Trust the importance of speech, language and communication skills for all children remains a cause of great importance to me.
Stammering is so often the butt of jokes. But it can be a debilitating impairment for the 1% of the population who stammer. A stammer can impact on all aspects of life and, in a society that values speech, hurdles and barriers are placed at every turn. Often described as an ‘iceberg’ the real impacts of stammering lay beneath the surface – avoiding speaking out, missing social occasions, not making phone calls, refusing to answer questions in class. As BSA say “the hidden aspects of the stammer include avoidances, fear and anticipation of stammering, and other difficult - often strong - feelings about stammering such as frustration, anger, sadness, embarrassment, and shame”.
The event was part of a wider awareness raising campaign leading up to #isad2016 to which we will return in a separate blog.
But I want to focus on the event which was – after 20 years of attending similar events – one of best examples of advocacy and creating a positive voice that I have come across. There is learning here for all of us attempting to raise the profile of a cause and affect positive change.
Why did it have such an impact? And what can other causes learn from this.
The power of together
One of NotDeadFish’s underlying principles is that collaborations and coalitions are essential for a thriving social mission sector. We are specialists in creating and supporting partnerships – working together is easily said and not often so easily done! The Stammering Network is a coalition of organisations advocating for better support for children and adults who stammer: Action for Stammering Children, the British Stammering Association, City Lit Speech Therapy, the Clinical Excellent Network for SLTs with a special interest in stammering, the Employers Stammering Network, the Michael Palin Centre for Stammering Children and the Royal College of Speech and Language Therapists. Together they are a powerful advocacy group of service users, parents and professionals.
Too often charities go it alone and campaigning can become more about charity brand than cause. Collaboration raises both profile but also increases the chance of developing system wide solutions that stick.
The importance of champions
Networks are important but these are amplified by the power of political patronage. Mr Speaker – John Bercow MP – was and remains a champion of speech, language and communication. Similarly, Ed Balls – fresh from Strictly – provided powerful testimony on the impact of his own stammer and on his work as Secretary of State implementing the recommendations of the Bercow Review.
On celebrating success
There is much to do. But much is right – the work of speech and language therapists is changing lives. Children and adult speakers outlined the positive impact of not just specialist help but also of supportive teachers, employers and colleagues.
All too often campaigns focus on the deficit model – the long lists of what isn’t working. There is a place for this but sharing and celebrating what works helps good practice spread.
Being realistic about challenges ahead
In too many areas of the UK children and young people cannot access specialist services and many adults cannot access any support at all. There is some excellent inclusive practice in schools but some still fail to make simple adjustments – like the school that forgot to tell the Modern Foreign Languages assessors that the GCSE students stammered. The pauses in their otherwise textbook French were marked down as lacking fluency.
The event last week highlighted these challenges with sense of urgency and importance, but not despair. During the day many attendees had also fed into the Bercow Review 10 Years On and this provided an important sense that the work was building on the successful campaigning that came before, while recognising the challenges of contemporary context.
The beneficiary at the centre
Without doubt the speeches by people who stammer were the strongest part of the evening. Brilliant guidance from Haben Girma on writing about disabilities is giving us at NotDeadFish pause on how we write about disabilities and other barriers to a full engagement in society. When reflecting on why the Stammering Network event had such an impact it was because they – consciously or otherwise – had used this guidance, these principles, to underpin their cause.
Their testimony of people who stammer – of the personal impact of stammering and of how they had been helped to progress – struck the perfect balance of highlighting need and showing the potential if we get services and support right. They were powerful advocates and their stories showed their strength, personalities and humour. They presented, with real clarity, what they need society to do to help them – exampled by the Employers Stammering Network, championed by employers including the Ministry of Defence and Ernst Young.
For the British Stammering Association the event – along with the impact of #isad2016 – has done more than raise awareness of stammering. It has created a network of powerful advocates for change and signposted even more people to the services and support that the charity offers. The challenge over months and years ahead is to ensure that even more of the 1% have their voices heard.