News | Stuttering Treatment and Research Trust (START)

Postponement of Looking back, going forward – START’s 25th celebration

Our START 25th celebration event on Wednesday 18 March has been postponed. Eric Allan, Board Chair, spoke of the Board’s sadness at having to make this difficult decision. He explained that the Board, with Janelle, have carefully reassessed the potential risk and on balance have decided that we would rather not proceed with the event at this time. It is a time for us all to be cautious and we want to safeguard our START community in every way that we can. We know that many of you will be greatly disappointed as is the Board and team alike.

As of now, we are unsure when we will be able to reschedule this event, but reschedule it we will! We promise you. So many of you have shown such tremendous support and enthusiasm for celebrating our great journey to date, and for looking to our future. We look forward to the time when we can come together to celebrate. Meanwhile we ask that we all remain aware of the ways that we can all keep as safe as possible as we move through this time of challenge arising from Covid-19.

Avoidance Reduction Therapy and its uses for people who stutter

Have you heard about Avoidance Reduction Therapy? In this blog, Beth Laurenson, one of our Speech Language Therapists, explains this therapy approach and how it can be used in treating people who stutter.

Avoidance Reduction Therapy for Stuttering (ARTS) is based on the idea that, although stuttering is thought to be a neurological difference, the struggle of stuttering in adulthood is a result of the fear of stuttering. ARTS helps a person to stutter in an easier way, and to embrace their identity as a person who stutters. The purpose of Avoidance Reduction Therapy is just that – to reduce avoidance behaviours, which increase physical struggle and promote negative feelings about speech.

The goal is not stutter-free speech, but for the individual to communicate in an easier way, and to freely participate in any activities they choose, whether they stutter or not. The individual takes on the role of a person who stutters, rather than hiding their stutter. Reported outcomes of ARTS include comfort and efficiency of speaking, confidence, and enjoyment of communication.

The ARTS approach is based on avoidance conflict theory created by Joseph Sheehan (Professor of Psychology) and his wife Vivian Sheehan (Speech Language Pathologist/Therapist). The desire to speak but also the desire to pull back results in additional behaviours, e.g. jaw jerks or closing eyes layered on top of stuttering. This often creates more struggle and intensifies the stuttering, creating “show stoppers” (stutters which last a long time and interrupt the flow of conversation). These often leave the person caught up thinking about the stutter afterwards, resulting in reduced enjoyment of communication. The fear of ‘showing’ stuttering often results in avoidance of words or situations.

ARTS works by removing additional behaviours from the individual’s stutter, leaving the core stuttering behaviours. By removing layers which increase avoidance and struggle, speech becomes easier and more enjoyable.

Here is an example of an individual’s stuttering iceberg, the elements which are removed during ARTS crossed out.

What does ARTS look like?

ARTS is based on each individual’s needs. Weekly assignments are created which work towards easier stuttering, and speaking freely (saying what you want when you want).

Examples of specific goals may be to:

increase eye contact
systematically reduce additional movements which occur during stuttering e.g. head/body movements
decrease word avoidance by putting the stutter where it should be
speak to a range of different people in different situations (with specific goals in mind e.g. earlier in therapy, answering the phone may be the measure of success, whereas later in therapy answering the phone and stuttering freely without word avoidance may be the measure of success).

ARTS is not a quick fix, and involves facing fears. However, the outcomes promote long term comfort and enjoyment of communication, without using tools or techniques to cover up stuttering. Many people note increases in natural fluency as a by-product of ARTS, as natural fluency often comes to those who do not value it.

Welcoming Nikki – our Grants Coordinator

This formal introduction is well overdue, as Nikki joined us in April of 2019! It has been wonderful having her join the team, taking charge of the Grants Coordinator position, previously filled by the amazing Frances.

Although Frances left big shoes to fill, we’ve been thoroughly impressed by Nikki’s enthusiasm, energy, and not the least by her impressive fashion sense.

Nikki comes from a background of marketing and fundraising for not-for-profits, Sales roles in Publishing and the Liquor Industry, plus running her own business. Nikki has a lifetime of travelling, helping others, and sharing her wisdom to bring to the role – a role that is fundamental to the very lifeblood of our organisation. As a not-for-profit, START is able to continue providing life changing services through the generous contributions of grants and trusts across Aotearoa. Our mahi is supported through the financial support we receive from these wonderful funders, and we’re able to apply for and receive these because of the hard work our Grants Coordinator puts in.

So you can see why it’s important to have someone like Nikki on our team! We feel very fortunate to have her with us, but what are her thoughts?

“START is such a wonderful organisation. The team and the board are all lovely and are all incredibly dedicated to helping people who stutter. It’s an inspiring place to work and I love to hear about all the life-changing work that the team are doing. Working at START is a lot of fun, and I count myself lucky to be here”

On behalf of our staff, the board, and most importantly our wonderful clients, welcome Nikki! We’re happy you’re here with us.

2019 in Review

This year has been one of new developments and change here at the Stuttering Treatment and Research Trust (START). Alongside that, was our ongoing work with people who stutter and with other professionals developing their practice in this area. As always, after 12 months of hard work, we like to look back and reflect on all that’s gone on at START this year.

Our ongoing work continued.

Over 200 people who stutter worked with our Speech Language Therapists (SLTs) to make a real difference in their lives. Family members accompanied many of our younger clients. Most of our clients came to see us in person, with approximately 20% of clients working with us by skype from all over Aotearoa, New Zealand. We also provided group programmes and social support to a number of people who stutter. These areas are the heart of our mahi or work. We continue to be encouraged by the progress so many people made over this year, and the way that this affected their lives and the lives of the people who love them.

We provided specialist workshops for approximately 100 SLTs working in other settings across NZ to support their work with people who stutter. Again, this work is vital, as it upskills generalist SLTs in this area.

We farewelled two long-standing team members as they embarked on new journeys.

Frances and Voon have both made significant contributions to START over the combined 20 years they’ve been with us. In June 2019, we said goodbye to Frances as she left to spend more time travelling and with family. Frances ably raised over $1,000,000 in trust and foundation grants during her 12 years as our Grants Coordinator. This funding has been key to enabling us to offer the level of service that we have provided over those years. Voon has been an invaluable addition to the START team of SLTs over the past 8 years, with his seemingly never-ending passion for working with people who stutter.

He also had a significant focus on ongoing development and learning and was a strong advocate for our group programmes. We said goodbye to Voon in August as he embarked on a journey to develop his skills in other areas. Voon has made a significant difference to the lives of the many people he has worked with and has helped to support and train a large number of SLTs working in other settings.

We welcomed some wonderful new team members as well.

Beth, Nikki, and Brittney all joined us this year and are already highly valued members of our team. It is exciting to have new energy and fresh eyes in our organisation. Beth and Brittney are both members of our SLT team, with Beth joining us in February and Brittney joining us in October. Both have taken to this specialist field eagerly. It’s been great to see their expertise grow and develop, supported by our longstanding SLTs. Nikki joined us as our new Grants Coordinator, and although Frances left big shoes to fill, she is a wonderful addition to our team and we appreciate her ability, alongside her energy and enthusiasm for START’s work.

We started to delve into the history of our organisation.

Next year marks 25 years of START helping Kiwis who stutter, and we want to celebrate that by collecting more knowledge about the history of how this unique organisation came about. We were, and still are, the only organisation in Aotearoa, that specialises in the treatment and support of people who stutter, and this in itself is worth looking back on. However, more than that, we are an organisation that was built from the ground up by people who stutter and those who love them, to fill the need for specialist treatment and support in New Zealand. This is a unique beginning for an organisation, and has meant that over the 25 years we’ve been in action, we’ve had so many dedicated people, including clients, staff, volunteers and Board members, walk through our doors and bring us to where we are today.

This year we worked with Dr Aroha Harris, Senior Lecturer in the University of Auckland’s History Department. Aroha and a number of her students have researched the history of START as a community organisation responding to community need. They have interviewed some key people in START’s history. We hope to bring all of this information together and we’ll be sure to tell you as soon as we do!

Save the Date – 25 years – looking back, going forward

As mentioned above, next year is a significant birthday for START, as we will have been providing services for people who stutter for 25 years. We have a few events planned to mark this special year, with the first of these being held on 18 March 2020 from 6:30 to 8:30pm here at The Stichbury Bidwill Centre. This will be an opportunity to celebrate what we have achieved together, catch up on what we are currently doing and look to the future. We are very excited to have Children’s Commissioner Judge Andrew Becroft as our speaker at this evening.

We started creating an interactive tree mural in our waiting area!

This year’s International Stuttering Awareness Day’s theme was ‘Growth through Stuttering’. With the help of many of you, we have created a tree mural on a wall in our waiting area, with each of the leaves featuring a quote from people who stutter about how stuttering has helped them grow. We’ve had plenty of compliments on the artwork, so we’ve decided to keep it up for the foreseeable future. People can continue contributing to it for as long as they’d like. If you have not contributed to it yet but would like to do so, send us an email or give us a call and we’ll post you out a leaf for you to write on and send back to us.

We are planning the production of a video to support kiwi children who stutter.

This is an exciting project and we will tell you more about that next year. We also have other exciting things in mind which we will tell you more about in 2020.

Happy holidays, and we look forward to seeing you in the New Year.

Janelle Irvine
On behalf of the START team and Board

Felix celebrates International Stuttering Awareness Day by educating his colleagues

Last Tuesday was International Stuttering Awareness Day and one of our clients, Felix, decided to send an email out to all his work colleagues to “put himself out there a bit more and to raise awareness”. We think this was a wonderfully proactive step on Felix’s part. He received some great feedback from his colleagues including how brave he was for sharing his story and they really appreciated his honesty. Here at START, we know that being open about stuttering can be scary but also liberating and it can also help to alleviate some of the anxiety and fear that comes with hiding stuttering. Being open about the fact you stutter is also a great opportunity to educate people about stuttering. Thanks so much for sharing your story with us Felix and allowing us to share it with the wider START community.

Kia Ora,

As most of you already know or might find out now… I am a person who stutters. I have stuttered since I can remember and have seen many Speech Language Therapists throughout my life. Being able to communicate and participate in life is easily something that most of us take for granted but can seem like a massive obstacle for a person who stutters.

Unfortunately, there is very little awareness but quite a few myths and misconceptions out there about stuttering. The best way to tackle these myths and misconceptions and consequently live a happier and fuller life as a person who stutters is to start conversations, raise awareness and communicate openly about stuttering to normalise and de-stigmatise.

So…why do we hear/know so little about stuttering? Well, stuttering is invisible until you hear
someone speak and people who stutter are masters of disguise which can leave other people in their life completely unaware of their stutter. People who stutter have learned ways/strategies or adapted to lifestyles (usually avoiding words or situations or even saying nothing at all) which allows them to hide their stutter. These behaviours can be driven by feelings of shame, embarrassment, frustration, fear of judgment, low self-esteem, anxiety, experiences of discrimination and bullying, etc. This has huge impact on the quality of a person’s life and their well-being.

Stuttering is not a physical or cognitive disability. Stuttering is not a reflection of a person’s
intelligence. Trust me, a person who stutters knows exactly what they want to say, they just find it difficult to get the words out sometimes. This goes beyond the hesitation or repetition everyone experiences sometimes when speaking. In fact, people who stutter often bring very valuable strengths and qualities to the table, such as resilience, empathy, compassion, listening skills and creativity. Some of the brainiest and most famous people in this world stutter/stuttered, e.g. Marilyn Monroe, Albert Einstein, Isaac Newton, Winston Churchill, King George VI, Bruce Willis, Elvis Presley, Ed Sheeran, Tiger Woods, etc.

Personally, I think my stutter is here to stay despite the support I have received throughout my life. I am not at peace with my stutter. It is omnipresent in my life and I am still on my journey of acceptance. But I try to look at stuttering from different perspectives. I believe stuttering has shaped me, helped me grow, formed the person I am today and has created/opened opportunities for me which might have not presented itself if I did not have a stutter.

So…I am sending this email to raise awareness and start conversations. Here are some facts about stuttering:
– Stuttering affects 1% of the entire population.
– There are more than 45,000 people in beautiful Aotearoa who stutter.
– People who stutter are no more or less intelligent than people who do not stutter.
– Stuttering affects four times as many males as females.
– There is no “cure” for stuttering but treatment to help a person who stutters to say what they want to say.
– Genetics are involved in the cause of stuttering, which means there can be more than one family member who stutters.
– People do not stutter when they sing – it is not entirely understood why.
– People who stutter often do so on the words that carry the most important meaning in a sentence or if a specific response is needed, such as saying one’s name in a meeting or phone call.

And how can you support a person who stutters? Well here are some tips:
– Be patient. Don’t finish the sentence or word, this can be very disempowering and unhelpful, especially if the listener guesses wrongly.
– Be a good listener. Focus on what the person is saying, not how they are saying it.
– Remember that stuttering varies. Don’t be surprised if a person stutters more in some situations than others, such as using the telephone, speaking in front of a group, introductions, etc.
– Remember it is OK to stutter. Don’t give advice such as “slow down” or “take a breath”. Maintain natural eye contact and wait patiently until the person has finished speaking.
– If you are not sure how to respond, ask the speaker. This might involve asking if there’s anything you can do to make it easier.

This email is only a snapshot to give a brief insight and raise awareness of a topic which is very close to my heart and affects a lot of people. Please don’t be shy if you want to find out more about stuttering. I also have some resources if wanted. I am always happy to have a chat. You know where to find me…

Happy International Stutter Awareness Day everyone!

Cheers,
Felix
#keepcalmandstutteron

*Photo featured is a stock image, not an image of Felix

Welcome Brittney – the latest addition to our Speech Language Therapist team!

Brittney is a born and bred Invercargill girl who studied Speech and Language Pathology at the University of Canterbury, graduating in 2012. She worked for the Ministry of Education in Invercargill and Wellington, before heading to the UK to work as a locum speech language therapist.

She has now returned to Aotearoa and we were delighted to have her join the START team in October. As an experienced speech language therapist, Brittney has worked with children and young people with a range of speech, language and communication needs. Over time, she has developed a special interest in working with people who stutter. She has now been with us for almost two months and we’ve already seen the passion she brings to her practice. Over this time, Brittney has dedicated many hours to developing the specialist skills required to be an SLT for people who stutter.

On her experience with us so far, Brittney says “I’ve really enjoyed my first two months here at START. I’ve learnt more about the amazing work that START does, met many people who stutter and their families, and have felt very welcomed. Deepening my knowledge about stuttering, and the varied treatment options available has been stimulating and I look forward to continuing this journey.”

Brittney’s warmth, skills, experience and commitment to people who stutter stood out when she was interviewed for the position. Janelle Irvine, our Executive Director said that when she first met Brittney she was struck by what a special person she was and how fortunate we were to have her join our team.

Brittney particularly enjoys working with people to help them build their confidence and abilities. She is also aware that for many people, but particularly younger ones, family support is so important on their journey. Brittney also has a broader interest in working with education professionals and others to make sure that people who stutter can be supported in the best possible ways.

As our SLT team grows, our organisation continues to flourish through fresh perspectives, new ideas, and the sharing of knowledge, so we are delighted to introduce Brittney to you as the latest addition to the team.

If you’re coming into START soon, make sure you say hi!

Speaking on the international stage as a person who stutters

Phyllis shares her experience speaking at International Stuttering Association’s World Congress 2019

In July 2019, Phyllis Edwards travelled to Iceland to attend the International Stuttering Association’s World Congress 2019. The theme was Embrace Your Stutter.

Phyllis lives in Paraparaumu on the Kapiti coast just outside of Wellington, and first made contact with START last year. She works for Castle Kids Kapiti and is very keen to share her story of growing up with a stutter in order to help others (particularly women) on their own stuttering journey. She has kindly offered to share with us her experience of speaking at an open microphone session at the World Congress. We hope you enjoy reading this as much as we have.

Thanks so much Phyllis for sharing so openly and honestly with us all.

Here I am sitting in the second row from the front in the Ork Hotel Conference Room feeling both excited, nervous and blessed that I got here. I am glad I hadn’t managed to talk myself out of it like part of me had tried to do.

In fact, I did quite a bit to try and prevent my being here. First, I had sent an email to Gina, our travel agent saying “Please tell me it is not possible for Donald and I to go to Iceland”. Gina, unfortunately, emailed back saying “Phyllis it is very possible”. Then, as we were going in to our annual bank review the ever-supportive Donald said “Phyllis I am going to ask to put the money for the trip on to our mortgage.” “No“ I protested. “Yes” said Donald “I believe in you.”

Try as I might to self-sabotage, I still made it to Iceland.

At least I was dressed for success. I was wearing a comfortable top given to me by our manager Tess, designer undies made with love from my trusty YouTube friend Lauren, and jeans from my friend and ex-supervisor Karen. My plan was if I wore clothes from people who believed in me, I would believe in myself too.

Then it all began.

The woman hosting the session said Anita Blom (international speaker, person who stutters, and my own mentor), would be sharing her keynote address after the open mic. Two people who I thought were amazingly brave got up and spoke. Then I heard the host offer one more chance for people to speak during this open mic session. “Who would like to speak” she asked.

My hand (that is known for having a mind of its own) shot up and I heard this voice calling out “Me, me please my turn”. The woman smiled, and held the microphone out as I rushed up. I opened my mouth and I heard this person saying “Hello, my name is Phyllis Edwards from New Zealand. Thank you for having me.” I then heard a fluent voice talking over me – I realized it was me speaking. “Oh no,” I thought, “What do I do now if my mouth won’t work?”

Suddenly I had this picture in my mind of the friends I knew were supporting me back home. I
thought of Alexis Parker, my adopted English sister who also stutters, Janelle from START, who I am proud to be affiliated with, and Anita Blom who had mentored me and suggested it was my turn to pay it forward. She mentioned this after I contacted her when returning from the British Stammering Association national Conference held in Cardiff Wales. That time I had left feeling disappointed in myself for not speaking during the open mic session. But not this time.

This time I felt strong and supported and wanted to do this for me and for others. I started sharing about my mum telling me my dad would come back if I talked properly, and about thinking I had a ‘tongue monster’ in my throat. I was able to share about being lucky enough to have been able to follow my dream of being an Early Childhood Teacher with a stutter. My story came flooding out of me.

I finished by sharing how at age 65 I realized that if I hadn’t had a stutter, my life may have gone in a completely different direction. I would not have amazing supportive close friendships, be in a job I loved where children and parents accepted me. These children have touched my heart and have taught me having a stutter didn’t matter. They have showed and taught me love, acceptance, and generosity by building these relationships with me. Also, it’s worth noting that without my stutter I might not be the interesting, quirky, prank-playing wife, mother, and friend I am today.”

And just like that, I thrust the microphone back into the host’s hand afterwards. All I wanted was to sit back down, curl up in my seat and listen to Anita’s keynote address. It seemed like it all went quiet, but then I heard what I thought was an earthquake. There was lots of noise, and I remember thinking “Oh that’s me! I have caused an earthquake or broken something!” I remember clutching the hands of the woman sitting next to me and then I slowly realized people were clapping and cheering and I saw some people standing up in my row. ‘’

It was awe-inspiring. Dropping back down into my seat, I was still quietly crying, feeling
overwhelmingly grateful for the opportunity to share my story, and overcoming my fear of standing up there with that microphone.

All at once I felt humble, lighter, healed, and relieved that I hadn’t broken anything or caused an earthquake.

If sharing my story can help just one young woman realise what I have realised at an earlier age than me, then to have a stutter may not be such a bad thing.

We couldn’t be more proud of you Phyllis, and we know the strength of your story has the power to change the lives of people who stutter.

Ricoh – Helping kids achieve their best START

In September last year, START sent out an appeal letter with the goal of raising $7,200 to help 10 Kiwi kids access treatment for stuttering. In response to this, Mike Pollok, CEO of Ricoh, and former START Board Member, reached out to us and generously offered to contribute 50% towards our goal. We are very grateful for this considerable contribution. We are delighted to share with you the story Ricoh published in their internal staff newsletter – The Ricoh Review.

In September 2018, the Stuttering Treatment and Research Trust (START) approached its supporter database with the goal to raise $7200 to provide specialist speech language therapy to ten Kiwi kids who stutter.

START was established in 1995 by a group of people who had experienced stuttering first-hand—either themselves or as parents of children who stuttered. Based in Auckland, with an office in Greenlane and a satellite clinic at Massey University in Albany, START is a registered charitable trust and the only organisation in New Zealand that specialises in the treatment of stuttering.

START changes lives by providing specialist treatment and support to
people who stutter and their parents, families and whanau. A team of specialist speech language therapists provides both one-to-one treatment sessions and a range of group treatment options. START also offers a mentoring programme for adults who stutter, as well as hosting a range of social events for people of all ages.

“Half way through our campaign, we were approached by Mike Pollok, wanting to make a meaningful contribution towards our appeal,” says START Executive Director, Janelle Irvine.

“On behalf of Ricoh, Mike generously offered to contribute 50 per cent towards our target of $7200.”

“Having been involved with START for many years as a trustee, I witnessed first-hand the transformation in young peoples’ lives when they were able to speak fluently for the first time,” says Mike.

“Ricoh is a communications company, albeit a business one, but what is more intrinsic to human communication than the ability to speak fluently—something so many of us simply take for granted.”

“With the addition of the $3600 donation from Ricoh, START raised a total of $8695, which means we are now in the position to help over 10 Kiwi Kids who stutter. We are extremely thankful to Mike and Ricoh for helping us exceed our target,” says Janelle.

Ricoh’s donation, along with the other funds raised, will go a long way to helping other children who access START’s services, such as Addison, as well as their families.

“When our son, Addison was three-and-a-half, we noticed him having problems with his speech. Over a matter of weeks, his speech deteriorated to the point where he was struggling with almost every sentence and was trying to force words out,” says Leighton Duke.

“As parents it was hugely painful watching our young son struggle in this way and we felt hopeless not knowing how to cope with the challenges he faced. Eighteen months down the track, Addison is a confident speaker thanks to the support START has provided and we are now armed with the tools to help our son. We can’t begin to thank the START team enough; to again see smiles and hear our little boy express himself and his big thoughts freely!”

“As well as the generous financial contribution, Ricoh has a long-standing history of supporting START by providing a printer/photocopier/scanner at no charge, which is a hugely generous donation and a much-appreciated support to our organisation,” says Janelle.

What is a stutter? Common myths and misunderstandings.

Debunking common myths around stuttering

Although nearly everyone knows the word, unless you are a person who stutters, there can be a number of myths and misconceptions surrounding what a stutter really is.

Before we get into what stuttering is not, why don’t we start with what stuttering is?

Stuttering is an involuntary interruption to the flow of talking. This can occur in different ways:

Repeating sounds or syllables, e.g. “B b b but it’s my turn”
Repeating words, e.g. “Can can can I be next?”
Prolongations (or stretching sounds) “That fffffffish is swimming”
Blocks “I…….I like vanilla”

The severity and type of stuttering may vary in different situations and from person to person. Interruptions to the flow of speech may be accompanied by signs of tension and struggle, as well as fear, embarrassment, and anxiety. In some cases, stuttering can dominate a person’s view of themselves and their social and work relationships.

What causes it?

We do not know exactly what causes stuttering. Stuttering is thought to be a physical disorder, most likely resulting from a problem in the neural processing area involved in speech production. It also appears that a genetic pre-disposition may be involved, as stuttering often runs in families.

Is there a cure?

There is no known ‘cure’ for stuttering. There are a variety of effective treatments available for children and adults who stutter but there is no ‘magic pill’ or cure for stuttering. The best results are achieved when the stuttering is treated early in childhood, preferably before a child starts school.

So, there are the facts. But there are also a lot of common misconceptions about stuttering. We’d like to debunk a few of these.

People who stutter do so because they are nervous, stupid, or shy

This is not true. Stuttering is not caused by anxiety but rather having a stutter may make the speaker feel more anxious as they cannot predict when they will stutter or how other people will react to their stutter. People who don’t stutter often associate stuttering with feeling nervous because most people experience ‘fluency breakdowns’ when talking to a large audience or when under time pressure. Even more important to note, is that a stutter has no relation to a person’s intelligence.

Stuttering is caused by emotional or physical trauma or stress

Stress and trauma can often make it more difficult for people who stutter to speak fluently, however they are generally not the cause of the stutter itself. Although there are some instances where physical trauma has caused a stutter (such as comedian Drew Lynch, who began to stutter after getting hit in the throat by a softball), these situations are fairly uncommon.

The reason why people stutter is still relatively unknown, but it usually develops during early childhood, and has links to genetics.

Stuttering and stammering are two different things

Although we often hear that someone has a stammer, and not a stutter, these are actually both the same thing! They are simply different words used by people who speak American English, and British English. Much the same way British English people might call this a scone, and an American English person might call it a biscuit:

We’ve actually written an entire blog post on how stammering and stuttering are different, which you can check out here.

If you’re a person who stutters, we’d love to know what the most common myth you hear is! And if you aren’t a person who stutters, did you learn something new today?

University and START combine to create an oral history of START

Last year the Board and Executive Director decided to explore the possibility of creating a history of the Stuttering Treatment and Research Trust (START) in an affordable way. We approached a number of Universities to see if any had senior students interested in doing this as part of their study. Imagine our delight when Dr Aroha Harris, Senior Lecturer in the department of History at the University of Auckland made contact almost immediately expressing her strong interest. Dr Harris teaches an Honours level paper in Oral History. We were delighted to hear of her interest and experience in creating community histories using a highly collaborative approach. Dr Harris has also worked in areas relating to government/community interface, which is very relevant to our history. It immediately became evident that this would be a very good way to advance this project.

The Board decided that it was important to get this project underway as soon as possible as the early steps which led to START’s establishment began in 1992 before the Trust was formally established in 1993. Following much hard work to bring the organisation to that point, provision of speech language therapy services began in 1995. We are keen to talk with and gather information from the people involved in those early days while they are available and accessible.

Ongoing development of the project culminated in Nigel Whiteman, Janelle Irvine and Eric Allan meeting with Dr Harris and her class in April. The areas of interest both to START and to the students were identified and a list of prospective interviewees has been developed. Since then the University has worked on its ethics approval and development of the project generally. START has approached those people we believe would be most important to interview asking if they would agree to be interviewed. Most encouragingly, but perhaps not surprisingly, all of those approached have agreed to be interviewed. Interviews will be commencing in the next few weeks. Some interviews will be as far away as Christchurch, Hawkes Bay and Tauranga.

The students will carry out the interviews and will also research START records and archives. Some will also be researching other wider aspects of societal and policy changes that were present at the time that START was developed. START came into being at a time when health and disability services were being reorganised with the reforms of the day, which included central government establishing local health organisations and stepping back from providing services in some areas, including stuttering. This led to some people in the community coming together to form START as an organisation which would respond to the needs of people who stutter and the needs of their families.

The outcomes of the project will include the interviews together with a number of essays, both relating to the interviews and also more generally to START not only coming into being at a time of change but also continuing to develop as it a vital community organisation which has touched the lives of so many people affected by stuttering. We are also hopeful that we will be able to compile the information into a single publication.

The history will also be an important part of the 25th anniversary next year of START providing services. It will have gathered up many stories and will be a useful collective story of a community organisation not only coming into being but also continuing to develop over its 25 years. A truly important history!