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)

Death and dying: it’s biography not biology that matters most at the end

We Need to Talk about Death Poster

Image courtesy of the BBC

This week’s guest blog post is a review of the recent BBC Horizon documentary, We Need to Talk about Death, written by Living Life to the Fullest Co-Researcher, Sally Whitney. In the documentary, Dr Kevin Fong makes a personal journey through the moral questions about death that face not just the medical profession, but each and every one of us. Many of the themes discussed in the documentary relate to the stories of disabled children and young people living with conditions labelled as life-limiting and life-threatening, and those of their families, that we are gathering in our project, Living Life to the Fullest. You can watch We Need to Talk about Death here on BBC iPlayer.

The program touched on issues that were relevant not just to palliative care and the process of dying, but in fact seemed to me to be applicable to the whole of healthcare.

It portrayed a range of doctors and facilities (hospices and cancer centres) that clearly understood the importance of doctors taking a step back from their everyday, medical school-enforced method of treating patients. In normal practice doctors are happiest “actively doing things” to improve symptoms of pathology, “continuing treatment in a pursuit of a cure”, as this has been at the core of all their training. And this pursuit of ‘curing’ can have a negative effect on patients’ choice, with some feeling penalised for not choosing to go for the most aggressive treatment option. Some people don’t even feel they have the option – whatever the cost to them personally. One patient in the documentary commented, “you may feel duty bound to go ahead with the treatments”.

A consultant admitted; it’s “easy to slip into the conveyor belt of big treatments,‘but harder to have the conversation [about the facts of dying]. It’s easy to go to default [mode].”

Importantly, this programme highlighted the need for a change of focus. One of the palliative care doctors stated “a patient passing away isn’t a failure” and conceded that at the end of a person’s life they want to “spend (their) time doing the things that make [them] human, not things that make blood tests better”.

The comprehension that dying is a part of a person’s life, a life that holds journeys, histories and relationships, and is not just a biological event happening to a biological organism, is a breakthrough. It’s about recognising the patient as a multi-layered person, giving choice to that person and giving them back the control over their life and their body – ultimately, treating them as a whole. The doctors on the documentary described this shift and change of focus as a tool that “empowers the patient… [looking] at what’s important; the quality as well as the quantity of their lives. It’s about not letting disease control your life”. And that’s what seemed most striking, the need to give patients choice. Not just in the matter of their lives ending and how they want that to happen, but also for ALL patients under the authority of physicians. Choice and ownership of one’s own body and way of living is key. One patient stated, “it’s about what I want to do with my life not what others want me to do with my life”. Simply put, it’s a “change of focus to what’s going to make an individual’s life better, not just [bring about] change in a scan”.

The understanding that the dying process is not just a biological stage nor a failure on behalf of both patient and doctor to ‘overcome’ a disease was summarised by one of the hospice doctors when he said; “Dying isn’t about dying from a disease, it’s about dying from a life”. It was this emphasis on life that was the central theme of the documentary.

The notion of dying being a process of completing life gave a poignant and positive interpretation of death. Dying becomes a period where a person uses their energy to complete life.

More than that, the documentary highlighted some of the same themes we have drawn from our project, Living Life to the Fullest. That, regardless of the length of life or the timescale one has before it ends, each life can be lived to the full, fully completed and that every moment of that life is important no matter how long it is. In regards to the young people living with LL/LTIs that have participated in our project, it is clear that every moment up to the point of death is important, valued and lived fully. The provision of palliative care and hospices for patients allows this ‘fullness’ of living and allows them to “live the best life they can”.

However, what was clear was that this isn’t something that can be achieved without a lot of effort and energy. The programme spoke of “frank, in depth” conversations about death that are difficult to have. However, once had, “almost everyone feels better for having them”. This ability to discuss dying leads to a number of positive outcomes for an individual; it helps them to “prepare, enables them to grieve and may lead to an acceptance of something that is inevitable for all of us”. Most importantly, it returns the power to have both choice and control to the patient. They have the right to reclaim the narrative of their lives back from doctors and live their chosen, full lives to the very end.

The power of choice (not just in terms of treatment options) was strongly illustrated by the discussion about the dying process only being able to happen once the patient has permitted it. It can only happen successfully when a person “understands what is happening, engages with it” and has taken steps to allow it to happen. These steps may involve the resolution of relationships, completion of tasks, planning and decisions about the meaning a person attaches to the life they’ve lived. If we consider dying to be the concluding chapter to the story of a life then we can more clearly understand it as needing to be a greatly considered, significant stage of a person’s journey that needs to be completed. As one of the palliative care consultants stated about death “it’s about the biography, not the biology”.

Perhaps the whole of medicine can learn something from the palliative care approach? A life is only as valuable as a person attributes meaning to it. Therefore, clinicians need to consider what course of action adds the greatest value to their patient’s life, whether that life is only halfway through its journey or whether it’s coming to the end. Whatever that action may be, it is clear that it needs to be something that allows each individual to live their life to the fullest, regardless of time left.

Sally Whitney, Living Life to the Fullest Co-Researcher

 

 

 

Parliamentary debate on support for children with life-limiting & life-threatening conditions

Palace of Westminister, LondonToday (Tuesday 29 January), MPs will participate in a crucial debate on support for children with life-limiting and life-threatening conditions across England.

Why is this happening?

Late last year the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care published a report on the extent to which the government’s end of life care commitment is being met for babies, children and young people who live with life-limiting and life-threatening conditions.

The government’s ‘Our Commitment to You for End of Life Care’ sets out what ministers expect commissioners to attain for babies, children and young people with life-limiting and life-threatening conditions, including:

  • Respite care, delivered in a children’s hospice setting, by community palliative care services, or ‘hospice at home’ services.
  • Good collaboration between different clinical and non-clinical services across a variety of different settings.
  • Support around bereavement, both before and after a child dies.
  • Prioritisation of children’s palliative care in commissioners’ strategic planning so that services can work together seamlessly and advance care planning can be shared and acted upon.

(Together for Short Lives, 2019)

The APPG is a ‘cross-party group of MPs and peers which seeks to educate, inform and motivate other parliamentarians to take action to transform the lives of children and young people across the UK with life-limiting and life-threatening conditions’ (Together for Short Lives, 2019), and the secretariat is the Living Life to the Fullest Project’s critical friend, Together for Short Lives.

What is the problem?

The inquiry behind the APPG’s report concluded that, despite the government’s commitment, children and families’ access to quality palliative care is erratic and depends largely on where they live in England. This is unjust and equates to a serious health inequality for disabled babies, children and young people with LL/LTIs and their families.

Through narrative and arts-informed methods, the Living Life to the Fullest project – based at the University of Sheffield – is hearing the stories of disabled children and young people and their families across the UK. Many of these stories – particularly those of parents – have reported that critical forms of care and support are being denied to their children, making life harder for families. Other parents have told of a serious lack of bereavement support after their child has died.

What will happen next?

Importantly, the APPG has demarcated a series of clear recommendations for government ministers and officials, working with partners, in order to make attempts to overcome the barriers that are endangering the end of life care commitment.

According to Together for Short Lives (2019), ‘this debate, secured by Jim Shannon MP, Vice-Chair of the APPG, is a crucial opportunity for MPs to call upon the minister to take these actions and set out what steps the government is taking to respond to the APPG’s recommendations’.

We will update you on the outcomes of today’s debate next week. You can access and download the APPG’s inquiry report here.

 

 

Poetry as the means to tell stories

Poster of the poetry workshopsOn Monday 21st January, Living Life to the Fullest researcher Kirsty Liddiard travelled to Loughborough to meet with colleagues from the Attenborough Arts Centre and Rainbows Children’s Hospice to plan a series of poetry workshops for children and young people living with life-limiting and life-threatening impairments (LL/LTIs).

The poetry workshops are taking place on Thursday 21st February at the Attenborough Arts Centre and Friday 22nd February at Rainbows Children’s Hospice.

Living Life to the Fullest is really excited that the workshops will be facilitated by Sipho Ndlovu, a spoken word artist and poet whose work explores disability, dyslexia and difference. Check his brilliant piece Re-Code by Man Made Youth here and For the City’s Young here.

The aim of the workshops is to enable disabled children and young people to tell new stories of their experiences of disability through poetry and spoken word arts.

An image of poet Sipho Ndlovu

Sipho Ndlovu, For the City’s Young

An image of poet Sipho Ndlovu

Sipho Ndlovu, Re-Code, by Man Mad Youth

To learn more about the Living Life to the Fullest project, please see here.

Turning 30

We are lucky this week to have a special blog post written by our brilliant Living Life to the Fullest Co-Researcher Carrie Aimes. Carrie writes her own blog, Life on the Slow Lane, which you can find here

Picture of Carrie Aimes

Carrie Aimes

Though I’d rather not admit it, I have a pretty big birthday coming up. In just over a week, I turn 30! It might not seem like much of a milestone to most people. But for those of us with muscular dystrophy, 30 is a big deal.

I’ve never really considered or cared much about age. Getting older has never bothered me, and I didn’t think I’d be fazed by reaching the big 3-0. But I’ll be honest, it is getting to me…just a little.

For various reasons, I’m not a fan of my own birthday at all. I’d rather it went unacknowledged and unnoticed. I hate any form of attention and am much happier when the focus is on other people. I’m definitely more of a hide in the corner type!

Back in October, I went on a five-day cruise to Amsterdam and Bruges, to celebrate my birthday. There are no other upcoming plans (at least, none that I’m aware of).

Those closest to me know I don’t like surprises (perhaps I am a bit of a control freak). So, if anything, all that’s left to come is a small family gathering – basically Sunday roast with the folks, the brothers, my sister-in-law and baby nephew. And that suits me just fine!

Muscular Dystrophy – A Life-limiting Condition

Accept it or not, the sad fact is, muscular dystrophy is a life-limiting condition. I’m aware of others who were told by medical professionals that they shouldn’t expect to live beyond the age of 20 (if that). In contrast, my parents and I were never given any indication whatsoever of my life expectancy. At no point were we told, ‘Carrie won’t reach adulthood’. Perhaps my consultants were being overly cautious. Perhaps they were just clueless! (I suspect the latter).

In a way, this allowed me to grow up in a state of blissful ignorance. For a long time, I believed I had just as much chance of growing old and wrinkly as the next person. It wasn’t until my late teens that I realised this wasn’t the case.

Now, I don’t want to get all deep and downbeat – just trying to keep it real (on the advice of certain people. You know who you are!).

Essentially, for better or worse, life has taught me to expect nothing. Expectation often leads to disappointment. These days, I try to go with the flow, I don’t make long-term plans or look too far into the future. I prefer to focus on the here and now.

Right now, I’m going to hold on to my youth for as long as possible by continuing to laugh at silly, childish things. I’m all about laughing, playing and having fun – believe me, I’ve had more than my fair share of serious!

And to anyone who doesn’t know otherwise, I’ll soon be 25, not 30 – thank’ya muchly!

Disabled Women’s Access to Healthcare

Cervical screening saves lives poster

An NHS public health campaign emphasising the importance of women’s access to regular smear tests.

Living Life to the Fullest Co-Researcher Emma Vogelmann, who works for MDUK, is collaborating with others to campaign for better access to healthcare for disabled women. The new campaign focuses on disabled women’s rights to access to good quality sexual and reproductive healthcare. Many disabled women miss important reproductive and sexual health screenings because of simple factors such as their GP surgery doesn’t have a hoist to support accessible examinations. This is compounded by problematic ableist assumptions about disabled women’s sexual and reproductive lives – that such care is secondary in the lives of disabled women because they are presumed not to have sexual and intimate relationships with others or become mothers – neither of which is the case, of course.

The campaign began through MDUK Trailblazer Fiona Anderson calling for accessible cervical screenings. Fiona says on her petition, “I have NEVER had a smear test because my GP practice does not have a hoist and couldn’t come up with another safe solution to examine me. Home visits for Cervical Screenings aren’t covered by the medical centre’s insurance and there is no database of clinics/medical centres with hoists to refer me somewhere else.” The petition now has over 85,000 signatures. You can sign the petition here.

Emma said, “I’m really excited about this campaign. Disabled women face so many barriers, but basic healthcare and screenings should be as available to us as easily as able-bodied women”.

To find out more about this important campaign, please see here.