Living Full Lives 2020 – A note on the upcoming #UCU strike action

Slide which shows images from across the project - largely disabled children's artwork, our publications and a title stating the event is happening.Seventy-four UK universities will be hit with 14 days of strike action in February and March 2020.

The disputes centre on the sustainability of the Universities Superannuation Scheme (USS) and rising costs for members, and on universities’ failure to make significant improvements on pay, equality, casualisation and workloads.

The action will start on Thursday 20 February and escalate each week, culminating with a week-long walkout from Monday 9 to Friday 13 March.

As a Research Team at a University that has voted to participate in the strikes, we have decided to go ahead with our end of project event, Living Full Lives 2020, despite it now taking place on a strike day of action.

We have made this difficult decision out of acknowledgement that many of our disabled participants, their parents and families, and our disabled young co-researchers – all of who work outside of the Academy – have already booked travel, accommodation and care/PA support in order to attend the event.

We stand by our university colleagues, and will observe the digital picket on Friday 21st February, out of respect for those taking strike action. A digital picket line is an online and electronic boycott of institutions whose workers are on strike; you can read more about this here.

If you have any questions, please email k.liddiard@sheffield.ac.uk

Disabled young people & employment

Employment and disabled people: What employers need to knowThe University of Sheffield and the My Life My Choice Project share their insights with Youth Employment UK on how employers can better support young disabled people.

Recently, two of our Living Life to the Fullest Co-researchers Lucy Watts MBE and Sally Whitney have been undertaking some work with Youth Employment UK, an independent, not for profit social enterprise founded in 2012 to tackle youth unemployment. Disabled young people are far more likely to be unemployed and under-employed than non-disabled young people, and Youth Employment UK’s aim has been to explore this ‘disability employment gap’ alongside disabled young people.

Key Findings

  • Why is there a disability employment gap?
  • What does the law provide for?
  • What is the business case for employing disabled people?

In the YEUK webinar, three young people also share their experiences on the challenges of transitioning from education into employment. They explore what barriers they experienced, how they felt about their futures and what changed things for them in finding youth friendly employers and being able to see themselves as young professionals.

Check out the free webinar here to learn from disabled young people about their experiences of gaining and being in work.

Thanks to The University of Sheffield, My Life My Choice Project and Sunderland People First along with our three young interviewees, Sally, Paul and Matthew.

One sentence that transformed my life

TedXNHS logo: Beyond Our Component PartsWe are thrilled to be able to share with you the recent TEDxNHS talk of our Lead Co-Researcher, Lucy Watts MBE. Lucy is a leading advocate, activist and trailblazer in all things related to disability, youth and care. Below we share her groundbreaking talk.

Lucy Watts was told in her mid-teens that she was going to die early. Her original prognosis was that she wouldn’t see her 18th birthday. Yet she did. Then came her next prognosis: that she wouldn’t live to her early twenties. In October 2019, a few days after her 26th birthday, Lucy delivered her TEDxNHS talk. And she’s determined that she’s still got a lot of living to do. Resolving to make an impact on the world around her, Lucy has found her purpose as a prominent patient advocate and disability advocate. Through sharing her roller coaster experience of highs, lows and everything in between, Lucy speaks of the importance of talking to every patient about what quality of life means to them. Of personalising care and building it around, not just needs, but desired outcomes, goals and aspirations. We may not be able to change the end result, but together, we can improve the journey. Lucy is a young adult with a life limiting condition who has exceeded every prognosis given. She is a prominent patient advocate and disability activist. Lucy works closely with the NHS to improve patient experience as well as internationally to improve access to palliative care. She received an MBE in the 2016 New Year’s Honours at the tender age of 22 in recognition for her work. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx
Lucy Watts MBE at TEDxNHS

Living Full Lives 2020! An Invite…

Slide which shows images from across the project - largely disabled children's artwork, our publications and a title stating the event is happening.

We would like to take this opportunity to invite you to Living Full Lives 2020 – an end of project event from the Living Life to the Fullest project!

The event is taking place on 21st February 2020 from 10.00-4.00pm at the Millennium Gallery, Sheffield.

To get your free ticket/s, please register on Eventbrite here

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). Over the last three years, alongside disabled young people as our co-researchers in the Co-Researcher Collective, the project has been a space where disabled children and young people have told new stories of disability; their own stories.

We are busy working out a schedule for the day, and will update you with details in due course. The event will run from 10.00am – 4.00pm and lunch and refreshments will be provided and there will be regular breaks throughout the day.

Excitingly, on the same day we will be launching the Living Life to the Fullest Art Exhibition (title TBC), which is taking place just next door at the Winter Gardens, Sheffield. The exhibition will showcase all of the artwork produced by disabled children and young people across the project, as well as other creative endeavours that have emerged.

Access information:

Wheelchair accessible venue (Millennium Gallery and Winter Gardens). The Millennium Gallery is fully wheelchair accessible from the Winter Garden or Cadman Lane entrances, and from the Arundel Gate entrance, using the elevator to reach the upper floor.

BSL Interpretation

Accessible toilets The accessible toilet in the Millennium Gallery is via RADAR key entry – we will have one available on the day for communal use. The accessible toilet is gender neutral. The are also non-accessible gender specific toilets available. Anyone can access the communal RADAR key.

In addition, there are two Changing Places toilets nearby; one at The Crucible Theatre and one at the Town Hall. See here for more details.

Parking Due to its city centre location, there is no dedicated car parking at the Millennium Gallery. The closest is the NCP car park at the Crucible Theatre. Limited disabled parking spaces are available for blue badge holders in Surrey Street, approximately 25 metres from the Cadman Lane entrance to the Gallery.

Visual Story A Visual Story will be available prior to the event, sharing clear information about getting to the venue and what to expect from the event. Please email Kirsty (see contact below) if you would like a copy.

For more information on accessibility, please see here and email Kirsty (k.liddiard@sheffield.ac.uk) with any access requests not included above.

The Canine Care Project – An Update

Screenshot 2019-10-28 at 12.56.33

Sally and her Canine Partner, Ethan

Some time ago we told you about an impact – or ‘offshoot’ – project that has emerged out of the Living Life to the Fullest project, largely down to our co-researchers wanting to further explore an area of their life and care that is important to them. Co-researcher Sally Whitney, along with Katy Evans, and our charity partner Canine Partners, have been leading this work – The Canine Care Project – and wanted to share an update.

The Canine Care Project is a research project that explores the experiences of disabled young people who have assistance dogs. An Assistance dog is the internationally established term for a dog that provides assistance to a disabled person, and is task trained to help support them in their lives.

Early findings from the Living Life to the Fullest Project showed that assistance dogs can play a significant part in the lives of disabled young people and can transform their experiences of living with disability. For example, young people told us that an assistance dog did far more for them than practical tasks (although these are very important), but actually made them feel happier, safer and more at ease in social situations.

The Canine Care Project began with a desire to explore these findings further. In partnership with Canine Partners, we administered an online questionnaire to disabled young people (aged 18-35) who are partnered with an assistance dog.  

Our research has shown that assistance dogs provide many psychological and social benefits such as increased independence, confidence, motivation and self-esteem. For example, the majority of disabled young people said that their expectations were exceeded (84.2%) by their assistance dog. Disabled young people readily reported to us that their assistance dog has made them feel more optimistic (86.2%) and that they have taken greater joy in everyday activities (91.4%).

“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

Assistance dogs were also said to boost confidence (89.7%) and help disabled young people in various areas of motivation such as setting new goals (87.9%), giving a sense of purpose (86.2%) and trying new things (84.5%).

“Making sure she’s ok [assistance dog] 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

We are now busy writing an accessible report of these findings, and making an animated short film, to share our findings with disabled young people and their families, education, social care and health professionals, charities and policy makers. Our aim in doing this is to emphasise the incredible benefits disabled young people have said that canine care can offer to them.

Sally said, “Working on this project has been both challenging and hugely rewarding. I’ve had to get to grips with statistics and a quantitative way of working as well as coordinating with others, all with different specialisms and goals. Yet it’s all been focussed on a topic that I’m hugely passionately about!

As ever, we will share our report and animated film here on our project blog when they are ready.

Word map: At the end of the online questionnaire, respondents were asked to give one word that they feel describes their dog. A word map of the responses is given below. In this word map, the size of the word corresponds to its popularity. So, as the word map below shows, the words “amazing” and “irreplaceable” were most commonly used by disabled young people.

At the end of the online questionnaire, respondents were asked to give one word that they feel describes their dog. A word map of the responses is given above. In this word map, the size of the word corresponds to its popularity. So, as the word map shows, the words “amazing” and “irreplaceable” were most commonly used by disabled young people.

 

 

Disability, Youth and Leadership: #EveryoneBelongs

Everyone can make a difference: Image courtesy of Emerald Publishing

Image courtesy of Emerald Publishing

The Living Life to the Fullest Project is really proud to have collaborated with the publisher Emerald on its celebrations for International Day of Persons with Disabilities (IDPD) 2019. You can access this collaboration here.

Since 1992, the International Day of Persons with Disabilities (IDPD) has been annually observed on 3 December around the world. The theme for this 2019 IDPD is ‘Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda’.

The centring of disability and leadership in this year’s theme means a lot to us as a Project Team made up of disabled young co-researchers and university researchers. We distribute leadership across our project, making space for disabled young people to become leaders of the research process in ways that are important to them.

Have a watch of our film, made by our co-researchers, to learn more about this distributed model of leadership.

As part of our IDPD celebrations, Living Life to the Fullest co-researcher, Sally Whitney, has co-produced a podcast with Emerald about her experiences of researching on the project. You can listen to the podcast here, or read the transcript here.

Sally said, “…having worked on the topic of disability and researching disability and hearing from other young disabled people has helped me get more of an insight into my own disabled identity. I now consider things in a different way that I wouldn’t have before. The young people that we’ve interviewed, the papers that we’ve written and the conclusions that we’ve come to have actually reflected back on to me and onto my thinking and how I feel about myself as a disabled young person. It’s just been incredibly empowering to be working on papers with academic professionals who’ve been in the field for so long. We’ve published papers in journals. I’ve written a paper which has also been published. I’m now co-leading an impact project on the topic of how assistance dogs help transform the lives of young disabled people. It’s a topic that I feel incredibly passionate about, having had the experience of having a wonderful assistance dog in my canine partner Ethan. I’m so excited to be leading on that and to be doing more research into it. We’re now writing a book which is amazing. I can’t believe that I’m in the situation where I’m helping write a book… It’s just incredible that I have been welcomed into the team and that I’m coproducing. I’m co-producing research in the field of disability and it’s fantastic.”

The below are also available as part of Emerald’s IDPD 2019 celebrations:

  • Podcast: “The Co-researcher’s Perspective” with Sally Whitney, co-researcher on the University of Sheffield project ‘Living Life to the Fullest’
  • Podcast: “Disability, Community and Inclusion” with Wendy Uttley, Down Syndrome Training and Support Service
  • Blog: “Participatory Design with Autistic Adults” by Marc Fabri, Leeds Beckett University
  • Blog: “Chronically Angry” by Alex Franklin, UWE
  • Blog: “Independence, interdependence, and the community” by Mukta Kulkarni, Indian Institute of Management Bangalore, and Eddy Ng, Bucknell University
  • Blog: “Transforming Classroom Practices for Learners with Disabilities” by Jeffrey Bakken, Bradley University
  • Lots of free papers from a range of subjects
  • Details of our latest opportunities to publish

The Living Life to the Fullest Project Team is currently writing a book that will be published by Emerald in 2020. Follow our blog to keep up-to-date on its progress.

 

 

Working the edges of Posthuman Disability Studies in Toronto

Image of a slide of Katherine's talkDuring her recent trip to Toronto, Canada, Living Life to the Fullest researcher Professor Katherine Runswick-Cole, (of the School of Education and iHuman at the University of Sheffield), delivered a lecture at Ryerson University. 

Drawing on work with colleagues Dan Goodley and Kirsty Liddiard and the Co-Researcher Collective made up of Sally Whitney, Lucy Watts, Ruth Spurr, Carrie Aimes, Emma Vogelmann and Katy Evans, Katherine spoke about the project, Living Life to the Fullest: life, death, disability and the human.

Katherine outlined the ways in which the project has used the principles of coproduction from research design to dissemination of findings and the impact that this has had on the research project.

Katherine said: “The Co-Researcher Collective has deeply influenced the way we do research. They have taught us how to do research differently, including using different methods and pace.  The audience in Toronto was very interested in the details of how we do this.  They asked questions about the ethics and the practicalities of this kind of research, including the use of online methods. It was a real privilege to be able to present the work at The School of Disability Studies at Ryerson, which is internationally known for its disability scholarship and activism.”