Arts Retreat 2018!

Excitingly, the Living Life to the Fullest project is gearing up to host its second Arts Retreat for young disabled people in May 2018. Our first one took place in October 2017 – it was featured on BBC Breakfast, which you can see here! Please check out our blurb below!

Are you a young person aged 8-18? Do you live with a life-limiting or life-threatening impairment (LL/LTI)? Would you like to take part in a two-day Arts Retreat where you can explore your experiences of disability and try and learn different art forms? 

If so, we at the Living Life to the Fullest project, in association with Purple Patch Arts, are hosting our next Arts Retreat on 29th and 30th May 2018, 10.00am – 3.00pm, at the Hillside Enterprise Centre, Leeds. Your lunch and any travel expenses will be paid for by the project; this goes for parents and carers too. If you would like a place, or have any questions, please contact Kirsty on k.liddiard@sheffield.ac.uk

Access: Accessible Blue badge parking; Changing Places accessible toilet; PA support. Please get in touch if you have any questions about access.

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Co-Researcher Voices: Speaking Out

Excitingly, co-researcher Emma Vogelmann has just had an article published in Huffpost about the Cambridge Analytica privacy scandal and the meaning of social media to disabled people. Emma offers a reflexive account of her own decision to leave Facebook in protest to Facebook’s actions. It’s a really insightful read that you can check out here!

  • Emma works as an Employability Officer at Muscular Dystrophy UK and is a rights activist.

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Exploring the world side by side

By Lucy Watts MBE and Kirsty Liddiard 

Lucy Watts MBE

Lucy Watts MBE and Molly

In this blog post, we share a revised/shortened version of  a conference paper given at a symposium hosted by the Institute for the Study of the Human (iHuman), Animal-Machine-Human: The place of disability, held on 10th October 2017 at the University of Sheffield. We originally co-wrote the paper through conversation. If you would like a copy of the full paper, please email k.liddiard@sheffield.ac.uk

Introducing Lucy and Molly…

We’d like to introduce you to Molly. Molly is a 5-year-old Dog A.I.D accredited assistance dog. Molly is also an Internet star, blogger (see her Facebook page, Molly, Dog with a Blog), friend and comrade to Lucy, and part-time Cocker Spaniel. In 2016, she was awarded an animal version of an MBE, an Order of Merit awarded medal that is ‘awarded to recognise animals that have shown outstanding acts of devotion and that symbolise the special relationship between animals and humans’ (PDSA 2016).

Lucy is a 24-year-old woman: an activist, campaigner, writer, and charity worker. In 2016, Lucy was awarded an MBE for her services to young disabled people. Lucy is also Lead Co-Researcher in our ESRC project, Living Life to the Fullest which, through the arts, is exploring the lives, hopes, desires and contributions of children and young people who live with impairments that are categorised as ‘life-limiting’ or ‘life-threatening’ (LL/LTI).

Day-to-day, Molly carries out a range of practical tasks with and for Lucy. Things like ‘picking up dropped items, undressing her, grabbing the post, loading and unloading the washing machine, pressing lift buttons, carrying items, and paying cashiers’ (Watts, 2017) – you name it and Molly and Lucy collaborate to make it happen. Past these seemingly mundane tasks, however, Molly also performs medical alerts. Through smell, Molly warns Lucy of body temperature changes, which for Lucy are an indication of life-threatening infections. Incredibly, Lucy says Molly will alert her 3-4 hours before her temperature spikes, by ‘incessantly licking my hands and arms’ (Watts, 2017). Molly also alerts Lucy when her blood pressure is dropping. In Lucy’s words, [Molly] ‘will do this by sitting or standing in my eye line, and staring at me, trying to make eye contact, or she may put her paws up on the arm of my wheelchair and stare straight into my eyes’ (Watts, 2017) – these are critical efforts that enable Lucy’s survival.

Outside of these practical and life-giving labours, for which both Molly and Lucy have been relentlessly trained – together, side-by-side: a partnership so carefully crafted – our focus in this post is to think about the intimacies that disability makes possible between animals and humans. We think that disability can bring animals and humans together into rare and intimate interdependencies not shared by many others. Through taking a look at Molly and Lucy’s world, and their relationships with and to disability, we suggest that their rare and unique bond shapes Lucy’s experiences of care and caring, social inclusion and access to the outside world.

 Rethinking Intimacy

In his book, The Two-in-One: Walking with Smokie, Walking with Blindness (1999: 9; you can read the introduction for free here) author Rod Michalko says of his relationship with his guide dog Smokie: ‘We are “person” and “dog” sharing a life together. We are human and animal living in the world and moving through it together’. Like Michalko and Smokie (1999), Lucy and Molly’s relationship is more than pragmatics and practicality (although we don’t deny that these are very important; see above). Instead, the two share a deep trust and bond that has sustained Lucy through the tumultuousness of her own life-limiting illness and uncertainty towards the future:

‘There are a few things I always think about when it comes to Molly and her love. One of these is that, to Molly, I am not disabled or sick, I am just ‘mum’. She loves me regardless. She loves me regardless of what mood I am in, how awful I look, and how much I lean on her for support – love is truly unconditional. It’s a powerful kind of love. And the thing is, they love you for who you are. Not disabled vs. non-disabled, not sick vs. healthy, not tall vs. short – they won’t care about all of that. They love you for who you are, all of you, without judgement, without exclusion. Molly sees past what a person would see when they look at me, and sees who I really am. That is so powerful’ (Watts, 2017).

‘…asking for help from a human carer I am forever apologising for what I need help with – to Molly, helping is a fun and rewarding game and she’s there in an instant (she never truly switches off), tail wagging, smile on her face and to Molly, the more help I need, the better the game! So I feel less of a burden asking help from my ever-faithful Molly than I do people’ (Watts, 2017).

While Lucy and Molly’s relationship is largely characterised by labour – e.g. they work together – Lucy’s latter account above reveals their relationship as a form of care very different to that which she experiences from humans. Lucy and Molly are able to understand and respond to each other’s needs in ways that alleviates Lucy from the emotional labours that can be part of receiving care as a disabled person – the being eternally grateful, the apologising, and the worrying about others, especially if our carer is also someone we love (e.g. a parent or family member).

‘Molly and I are enjoying exploring the world side by side’: Considering Public Space

 To move from the private to the public, then, Rod Michalko highlights the everyday reactions of (typically non-disabled) others as he and Smokie move through the social world together. While Michalko liked to play with inquirers – “Man on the street: is that one of those blind dogs?” Michalko: “Jeez, I hope not” – he identifies such curiosity as others trying to understand their identities as blind man and guide dog in a human sighted world.

Similarly, if we look to Lucy’s experiences, we can see that Molly’s presence mediates Lucy’s encounters with others in public – together they become a social subject. We don’t say this to position Lucy as less-than-human, of course, but to recognise the ways in which Lucy and Molly come together in public and how this togetherness is recognised by others – enabling particular kinds of social interactions, as Lucy stresses:

‘Prior to Molly, people were too scared to talk to me in fear of saying the wrong thing. I felt invisible, because people didn’t acknowledge my existence, except from staring at me from a distance. With Molly, however, people were coming up to me and instigating conversation. They’d ask me about my beautiful dog, and I quickly gained in confidence. Suddenly I was being stopped all the time by people; and I, too, found the confidence to strike up conversations with others. From the extremely shy girl I was, I was blossoming into someone who felt able to talk to others, to hold conversations with people I’d never met. I felt a part of society again, and that was all down to Molly’ (Watts, 2017).

While we must always trouble the idea of disabled people being humanised in the eyes of (non-disabled) others by animals, what is striking in Lucy’s account is the way Molly’s very presence enables a visibility and social inclusion that is deeply important to her. Molly mitigates much of the discrimination typically encountered by disabled people in public spaces – stuff like hostility, stares, rejection, and patronising attitudes’ that can make disabled people feel worthless, hassled, ignored or scared. Molly makes very meaningful the little time Lucy gets out in her local community due to illness. As Lucy said, ‘the four walls of my bedroom had become my prison; but my dog had set me free’.

We want to end this short piece by sharing that, following discussion with our Co-Researcher Collective of young disabled people, we have decided to ask young disabled people about their relationships with their assistance animals (or other animals) through the project. We are left wondering how the intimacies between disabled people and (assistance) animals might be especially valuable for children and young people with life-limiting and/or life-threatening impairments (LL/LTI), where there may be increasing needs for care, forms of support, and feeling safe and included. Fittingly, we end with Lucy’s words:

I owe her [Molly] an awful lot. My happiness, my purpose, my positivity, my zest for life, my fulfilment, my work, my life; I’d go so far as saying my existence. She’s changed my life beyond all recognition, but she’s saved it too – in more ways than one (Watts, 2017).

References

  • Liddiard, K (2018) The Intimate Lives of Disabled People.  Abingdon: Routledge
  • Michalko, R. (1999) The Two in One: Walking with Smokie, Walking with Blindness. Philadelphia: Temple University Press
  • Watts, L. (2017) A blog about life, illness and overcoming obstacles. Available from: http://www.lucy-watts.co.uk [Accessed 1/10/2017]

 

 

#ARTSRETREAT2017 DAY TWO…

Day Two, of course, was equally action-packed. We started off the day making masks to think about what we want from our futures – careers, families, travel, and the rest. Excitingly, we had BBC Breakfast come to film and report on #ArtsRetreat2017 which brought no end of fun. Everyone was interviewed by Graham Satchell, the reporter, and filmed by the wonderful cameraman (who let us play with his camera).

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You can see the report in full here. We are really pleased with the sensitive and thoughtful tone – please feel free to share the link.

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#ArtsRetreat2017 Day One…

The first day of our two-day Arts Retreat led by Purple Patch Arts has been action-packed. We are working with a brilliant group of young disabled people who are throwing themselves into the action without a second thought. So far, we’ve talked about what experiences and feelings we both hide and put on display through making lava lamps; we’ve made postcards of our happiest times and places; we’ve considered our heroes and what kinds of qualities are important through a wall of words; we’ve thought about what’s important in our lives – our relationships, aspirations for the future and what we enjoy – through making sand-mugs; and we’ve explored what we think of ourselves, but also the words and assumptions that get imposed upon us, through body-mapping.

This latter activity was really interesting because it revealed that it’s far easier to focus on the things we don’t like about ourselves than it is the good. We know that this isn’t just the case for young disabled people, but a whole host of groups: it’s also endemic in a culture that proffers perfection and success as the only valuable ways to live. How might we change this? How might we celebrate each other and ourselves, and in ways that run counter to typical discourses of disability that only denote deficit, lack and burden?

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Most importantly, we have been documenting all of this with our Polaroid cameras (which are utterly awesome).

It’s been lovely to spend time with families, too. The Retreat being residential means that there’s lots of time to have dinner together, play board games and chat into the evenings. Not surprisingly, families have similar stories about access, resources, services and provision, which reveal just how much fighting for what you and your family need has become the norm for many.

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Tomorrow we head into Day 2, so this entry is to be continued… In the meantime, check out our hashtag #ArtsRetreat2017 and follow @iHumanSheff.

 

Last few spaces… #ArtsRetreat

Are you, or do you know, a young person aged 13+ living with a life-limiting or life-threatening condition (LL/LTC)?

If so, the Living Life to the Fullest Project (livinglifetothefullest.org) is seeking young disabled people (13+) to attend a residential Arts Retreat at Treloar’s School and College this October half term. We have just a few spaces left that we really want to fill.

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 young people with ‘life-limiting’ or ‘life-threatening’ impairments.

The Arts Retreat will encompass a range of art-making techniques, led by the brilliant Purple Patch Arts, and is taking place on 24th and 25th of October 2017 (with full board available from 23rd – 26th). Attendance at the Arts Retreat is fully funded by the project for the young person and up to 3 family members, who can accompany them if required.

If you are interested or have any questions please email k.liddiard@sheffield.ac.uk asap!