Co-creating a Research Toolkit

Greenacre School logoOn Tuesday 7th May, Living Life to the Fullest researcher Kirsty Liddiard visited Greenacre School, Barnsley, to begin planning the Living Life to the Fullest Co-Production Toolkit. Greenacre is a local school educating children and young people aged 3 – 19 with severe and complex needs. 

Living Life to the Fullest, and its Co-Researcher Collective of disabled young people, are collaborating with Greenacre School – specifically Harry Gordon, SEN Teacher, and six Greenacre students – to co-design and create a “research toolkit”.

The Co-Production Toolkit aims to record and disseminate with others our ways of working in co-production with disabled young people in the research process. In the last decade, ‘public bodies — from non-governmental organisations (NGOs) to national charitable organisations — have begun to produce their own guidance as to how to research with children and young people’ (Liddiard et al. 2018: 2). But we have been left wondering: where are the voices and expertise of disabled children and young people?

Our ‘preliminary read of such guidance reveals disability as present primarily only through concerns about safeguarding, accessibility and gatekeeping, and as that which demands extra time, resources, and planning on the part of the academic researcher (see Bailey and others, 2014). Seldom is there any explicit focus towards disability as a worthwhile life experience and valuable lived perspective from which to contribute — a positionality readily adopted in Living Life to the Fullest’ (Liddiard et al. 2018: 3).

Kirsty spent the day at Greenacre, meeting staff and students, and sitting in on some classes. In the afternoon, Harry and Kirsty met with the student collaborators and through exploring the invention of the fingerprint, (and finger printing each other!), we had conversations about the meanings of exploration and investigation. All of our student collaborators were excited and ready to jump aboard the project!

Through the Toolkit, we want to diversify our methods and practices of co-production to a broader demographic of young people: including young people with the labels of learning disability and autism, who are routinely omitted from research process. We want to take an online and offline approach – with downloadable resources such as short films, podcasts, animations and templates co-created by our co-researchers and student-collaborators. We also want to explore the possibilities of research as a learning practice for SEND pedagogy and politics. Ultimately, we want the Toolkit to be used by youth workers, teachers, social work practitioners, academics, researchers, charities… the list is endless!

As ever, we will keep you up-to-date as we go!

To learn more about Living Life to the Fullest, or if you have any questions, please email k.liddiard@sheffield.ac.uk

References

Liddiard, K., Runswick-Cole, K, Goodley, D., Whitney, S., Vogelmann, E. and Watts, L. (2018) ‘“I was excited by the idea of a project that focuses on those unasked questions”: Co-Producing Disability Research with Disabled Young People‘, Children and Society, 33: 2, 154-167

 

Youth, disability and employment

Quote screen: I think when you are disabled it's much more difficult to turn up and just do a week working in the office because you cant...

Participant Quote

In this brief blog post we want to share a short film made recently by the Living Life to the Fullest project.

It focuses on youth, disability and employment and draws upon the stories of disabled young people collected by our Co-Researcher Collective. In their interviews, co-researchers asked disabled young people how they felt about work and life, and what they wanted for their futures.

Please take a look at our film here and share on social media! Visit us on Twitter at @FullLivesESRC

If you have any questions about Living Life to the Fullest, please email k.liddiard@sheffield.ac.uk

“I’m me, and that’s all that matters”: Co-creating poetry with disabled children and young people

Sipho Ndlovu

Sipho Ndlovu

On 21st and 22nd February 2019, Living Life to the Fullest researcher Kirsty Liddiard, from the School of Education and iHuman, University of Sheffield, collaborated with Georgina Barney from the Attenborough Arts Centre, Stacey Curzon from Rainbows Children’s Hospice and professional poet and artist Sipho Ndlovu, University of Sheffield, to host two poetry workshops with disabled children and young people. The workshops were part of the ESRC-funded Living Life to the Fullest project, co-led by Kirsty with Dan Goodley and Katherine Runswick-Cole (both of School of Education and iHuman) and the Co-Researcher Collective.

The Living Life to the Fullest project is a research project which seeks to forge new understandings of the lives, hopes, desires and contributions of children and young people with ‘life-limiting’ or ‘life-threatening’ impairments (hereby LL/LTIs). With children and young people alongside as our co-researchers, the project is a space where disabled children and young people can tell new stories of disability – their own stories.

The first workshop was held at the Attenborough Arts Centre in Leicester, an arts centre that prides itself on being accessible and inclusive. The second was at Rainbows Children’s Hospice, which provides care and support for children and young people with life-limiting health conditions and disabilities, and their families. The aim of the workshops was to enable disabled children and young people to tell new stories of their experiences of disability through poetry and spoken word arts.

Sipho Ndopu, a spoken word artist and poet whose work explores disability, dyslexia and difference, led the workshops. Check out his brilliant work Re-Code by Man Made Youth here and For the City’s Young here. In the workshops, Sipho worked in inclusive ways to co-create poetry with disabled children and young people based on their own lived experiences. The workshops offered quality arts engagement with inclusivity at its core. Workshops acknowledged the ways in which mainstream arts activities and spaces can routinely exclude disabled children and young people, with the aim of building bridges between accessible arts and young people who aren’t always afforded opportunities to participate.

Following some fun warm up activities, young participants were invited to explore creative responses to questions such as: How do you see yourself? What do you like doing? What brings you joy? Colourful responses were offered through drawing, poetry, dancing, iPad play, and performing for others.

Rupert age 10

Rupert*, age 10

Rachel age 10

Rachel*, age 10

Sakiya age 9

Sakiya*, age 9

Below is a poem, written in one of the workshops, by Natasha age 9,

My eyes are blue.

I’m pretty.

I’ve got long blonde hair.

I’m kind and happy.

I like myself.

Half of me is German.

It’s blurry because my eyes move.

I’m interesting.

I look like Mummy.

I look a bit like Daddy.

E is for Eggs.

Natasha, 9

 Similarly, Alex, aged 13 wrote the following poem in response to the question, How do you see yourself?

I can be funny, kind and caring

I’m crazy at times but inside I love my friends and family.

I’m grumpy sometimes but I get over it.

I can also be annoying at times but then I’m happy later on.

Like I said, I love and appreciate every minute with friends.

Alex, 13

And Sam, aged 13, wrote about the importance of intimacies with friends and family:

Sometimes I’m happy, sometimes I’m sad

I can be lazy but I do my best.

I think of others before myself, as I love my friends dearly.

 

I’m not the best at everything, but that’s fine,

I don’t need to be loved by everyone because I’m happy with who I do have.

I’m limited to what I can do because of my disability, but I keep my head high…

 

… Because I’m me, and that’s all that matters.

Sam, 13

These poems, and the many pieces of artwork created in the workshops, are powerful because disabled children and young people are rarely given space to express their thoughts, opinions and feelings, especially within the context of the arts. For us, the arts can generate a diversity of stories, countering the ‘single story’ of disability that routinely centres tragedy, particularly in the context of childhood. Thus, the arts can ‘voice another storyline’ of disability (Golden 1996: 330) – one of joy, self-esteem and creativity – centring the lives of young people with life-limiting and life-threatening impairments in this exclusion.

Moreover, in Living Life to the Fullest we consider disability arts as activism – creative storytelling with radical potential for disability rights and justice (Mingus 2010). As we found in our first Arts Retreat for young people living with life-limiting and life-threatening impairments, art making can provide a way to critically and sensitively re-imagine the future as vital, desirable and pleasurable. We’ve found through young people’s stories, that many of those living with life-limiting and life-threatening impairments are routinely denied opportunities to hope and dream ‘future’, despite the unremitting necessity to plan imposed upon them through the transition between child and adult care. The arts, when accessible and inclusive, can make space for this to happen.

Parents also came along to the workshops. At the Attenborough Arts Centre, parents commented how special the centre is as a key resource for the family – a place to come for family time “without being stared at”. Another parent said that she regularly brought her disabled child to the centre’s coffee shop because it was a rare space in which they were welcomed, relaxed, and included. These experiences emphasise just how difficult and hostile some public spaces can be for disabled children and their families – something our parent participants, who have been interviewed as part of Living Life to the Fullest, are readily emphasising in their own stories.

Excitingly, participants’ poems and artwork will now be featured in a national exhibition, Visible Liveable Lives, held at the end of the project in Sheffield City Centre. The exhibition will also be hosted online, coming soon!

To keep up with the Living Life to the Fullest project, please follow this blog! For any other questions, please email Kirsty: k.liddiard@sheffield.ac.uk

* Participant names have been changed.

References

Golden, J. (1996) “Critical Imagination: Serious Play with Narrative and Gender.” Gender and Education, 8: 3, 323–336.

 

 

Thinking through Critical Disability Studies

We are pleased to say that we have had another article published that is based on our ESRC project, Living Life to the Fullest.

Provocations for Critical Disability Studies, published in the academic journal Disability and Society, has been co-authored by Living Life to the Fullest researchers Dan Goodley, Katherine Runswick-Cole and Kirsty Liddiard along with Rebecca Lawthom from Manchester Metropolitan University.

The article explains and questions some of the theoretical principles underpinning Living Life to the Fullest as a project rooted in Critical Disability Studies. The article is open access – meaning it is free for everyone to read – and can be accessed here.

Below, you can read our abstract, our accessible Points of Interest, and an Easy Read version we have produced.

Abstract

This article posits a number of provocations for scholars and researchers engaged with Critical Disability Studies. We summarise some of the analytical twists and turns occurring over the last few years that create a number of questions and concerns. We begin by introducing Critical Disability Studies; describing it as an interdisciplinary field of scholarship building on foundational disability studies theories. Critical Disability Studies scholarship is being produced at an exponential rate and we assert that we need to take pause for thought. We lay out five provocations to encourage reflection and debate: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability? We conclude by making a case for a reflexive and politicised Critical Disability Studies.

Points of interest

  • This article introduces and discusses the field of Critical Disability Studies.
  • Critical Disability Studies thinking has developed in some controversial and complex ways over the years.
  • We review some of these developments and pose five questions that we think are urgently needed to be addressed by Critical Disability Studies researchers.
  • Our questions are: what is the purpose of Critical Disability Studies; how inclusive is Critical Disability Studies; is disability the object or subject of studies; what matters or gets said about disability; and how can we attend to disability and ability?

Easy Read

Please email k.liddiard@sheffield.ac.uk for our Easy Read version in Microsoft Word of PDF.

Easy Read JPG of our article (a PDF is available)

 

 

Co-Researchers in the media

Sally's article in the Brighton Argus newspaperOn  March 1st 2019, Living Life to the Fullest co-researcher Sally Whitney was featured in the Brighton Argus. The article, entitled How my dog changed my life for the better (McAllister, 2019), told Sally’s story of her experience of being partnered with her assistance dog, Canine Partner, Ethan.

Sally said, “Ethan does more for me than just tasks, he is a constant comfort – his unconditional love and constant desire for cuddles is a treatment in itself.”

“The tasks that Ethan does can be done by my carers, but being able to achieve them on our own, between me and Ethan, brings a fabulous sense of freedom.”

We reported in a blog post last week about Living Life to the Fullest’s new project with Canine Partners, a registered charity that partners specially trained assistance dogs with disabled people. The impact project, being led by Sally on behalf of Living Life to the Fullest, will evidence and quantify the benefits of assistance dogs for disabled young people. Living Life to the Fullest will then share this with multiple audiences: disabled young people and their parents, carers, families and allies; policy makers; commissioners; local authorities; and health, education and social care professionals. We are also hoping to make a short animated film with the support of our Community Research Partner, Purple Patch Arts, to narrate and animate young people’s stories about why their assistance dogs are so important to them, their lives and their futures.

Sally said, “Ethan has transformed my life so much. He’s shown me that I no longer need to reject the notion of my own disability. By accepting my illnesses and embracing my weaknesses, new realms of life have opened up. [Ethan] has bought so much happiness and so much colour to my life. I would have an incredibly hard time imagining my world without him.”

 

Strong young disabled women making waves in research

International Women's Day logoThis International Women’s Day (#IWD2019) we want to celebrate our co-researchers in our Co-Researcher Collective, all of whom are proud disabled young women.

International Women’s Day (March 8) is a global day celebrating the social, economic, cultural and political achievements of women. The day also marks a call to action for accelerating gender parity.

International Women’s Day (IWD) has occurred for well over a century, with the first IWD gathering in 1911 supported by over a million people in Austria, Denmark, Germany and Switzerland. Prior to this the Socialist Party of America, United Kingdom’s Suffragists and Suffragettes, and further groups campaigned for women’s equality.

The International Women’s Day 2019 campaign theme of #BalanceforBetter is a call-to-action for driving gender balance across the world.

As an ESRC-funded project, Living Life to the Fullest is really proud to be creating research opportunities for disabled young women. Disabled young people with life limiting and/or life threatening impairments are typically excluded from academic research, particularly in regards to its leadership (Liddiard et al. 2018). We are proud to say that The Co-Researcher Collective is radically impacting the way research is typically carried out. Collectively, co-researchers are co-leading the project, undertaking fieldwork (collecting data), collaborating in data analysis, and writing, sharing and promoting the research and its findings (Liddiard et al. 2018; Whitney et al. in press).

Co-Researcher Sally Whitney said, “Joining the co-researcher collective has benefitted me personally in addition to being a group doing fab quality research into the lives of young, disabled people. This is because it a group formed of amazing, strong, young disabled women who are making waves in and outside the spheres of disability studies and activism. They have challenged me to believe in myself more, value and trust my own experience and allowed me the space to grow in the field of research. Not only that but they are bold, powerful women who have taught me that I am far more capable than I realise and inspired me to push the limits of my own and society’s expectations.”

Co-Researcher Emma Vogelmann said, “Being in an all female research group has been an amazing experience. We work together so well, particularly as some of us have never met in person! We have become great friends who empower each other and support each other everyday. When I see an article about smashing the patriarchy or about an amazing disabled role model, I instantly want to share it with the co-researcher collective!” 

Keep up to date with our fab project by following our new Twitter account: @FullLivesESRC

Rethinking Care & Support: Listening to disabled young people

A picture of a woman in a wheelchair (Sally) with her assistance dog, Ethan.

Sally Whitney, Co-Researcher, Living Life to the Fullest

This week has been a big week for the Living Life to the Fullest project. We are very proud to announce a small impact project we are undertaking, led by our Co-Researcher Sally Whitney in collaboration with Canine Partners, a registered charity that partners specially trained assistance dogs with disabled people. 

For almost a year, our co-researchers have been collecting the stories of fellow disabled young people through multimedia interviewing, for example through Skype and Facebook.

Preliminary project findings have emphasised the benefits of assistance dogs for disabled young people living with life limiting and life threatening impairments (hereby LL/LTIs). Specifically, our focus in Living Life to the Fullest has developed from hearing young people’s stories about their relationships with their assistance animals, and the meaning this form of care and support has in their lives. For example, young people’s stories have emphasised (i) the positive emotional impacts of this form of support; (ii) the emergence of new intimacies between humans and animals; (iii) the ways in which assistance animals contribute to the building of positive identities and futures; and (iv) how they can transform the social lives and experiences of disabled young people with LL/LTIs.

“Around the university campus I had gone from being the girl in the wheelchair to being the girl with the amazing dog and that was a very liberating feeling”

– Living Life to the Fullest Participant

This is something we have written about before in Living Life to the Fullest. In 2018, co-researcher Lucy Watts MBE MUniv and Kirsty Liddiard co-authored a short article about human and animal intimacies, based on Lucy’s experience with her assistance dog, Molly – you can read this here.

“Making sure she’s ok is a reason for me to make sure I am ok – I look after myself better so that I can look after her as she deserves. People treat me differently too, they ask about the dog rather than asking why I’m in a wheelchair.”

– Living Life to the Fullest Participant

In collaboration with Canine Partners, then, in this small impact project we will evidence and quantify the benefits of assistance dogs for disabled young people with LL/LTIs. Nik Bakalov of the University of Sheffield will support this work. A key aim is to produce a quantitative analysis of the impact of an assistance dog on young people and communities. Living Life to the Fullest will share this with multiple audiences: disabled young people and their parents, carers, families and allies; policy makers; commissioners; local authorities; and health, education and social care professionals. We are also hoping to make a short animated film with the support of our Community Research Partner, Purple Patch Arts, to narrate and animate young people’s stories about why their assistance dogs are so important to them, their lives and their futures.

“Rover [assistance dog] is also great fun to have around and he keeps me motivated. He also makes me laugh a lot as he can be quite cheeky – he sometimes brings me the house phone or remote control even if I don’t need them just so he can get a treat.”

– Living Life to the Fullest Participant

We are really proud that this project is being led by Sally. Sally has lots of experience and is supported by her Canine Partner, Ethan.

Sally says, “Our research [Living Life to the Fullest] shows the power of a partnership between young disabled people and assistance dogs that goes far beyond the physical tasks they can do. We can’t wait to share the transformative effect of canine support in our upcoming film and quantitative analysis, that we hope will truly show how these amazing dogs change lives and empower and enable their humans to live even more fully.”

As always, we will keep you updated as this brilliant project progresses.

Sally Whitney and Kirsty Liddiard

 

Photographs courtesy of Woman’s Own (2018)