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Online seminar – Disabled Young People’s experience of Personal Support: Intimacies, identities and embodiments in Personal Assistance Relationships

Wed, 25 May 2022, 15:30 – 17:00 BST

Sign up here: https://www.eventbrite.co.uk/e/disabled-young-peoples-experience-of-personal-support-tickets-327938732577

Ned Coleman-Fountain University of Northumbria

Harvey Humphrey University of Strathclyde

Alex Toft Nottingham Centre for Children

This presentation will explore some themes from an ongoing project looking at young disabled adults’ experiences of getting support from Personal Assistants (PAs). PAs are social care workers employed directly by disabled people. They provide important support that enable disabled people to live independent lives. This project has asked young people with a range of different genders and sexualities about their experiences of choosing and working with PAs. This presentation will explore how gender and sexuality, understood in relation to identities and embodiments, matter for the decisions young LGBT people make to ensure they get the right support.

Ned Coleman-Fountain  (he/him) 

Senior lecturer in Sociology at the University of Northumbria, where he is currently EDI lead in the Department of Social Sciences. His current research focuses on the intersections of disability, gender, and sexuality in the contexts of adult social care

Alex Toft

Research Fellow in the Nottingham Centre for Children, Young People and Families at Nottingham Trent University. His research focuses upon sexuality, gender, disability, spirituality and identity. He currently works with a Young Disabled LGBT+ Researchers Group exploring the lived experiences of young people who are autistic and LGBT+.

Harvey Humphrey

(they/them/their)

really likes poetry

creative flair

A poststructuralist sociologist

they really like language, discourse and bodies

they’re just a bit interdisciplinary

and into creative methodologies

On an ESRC postdoc fellowship

at the University of Strathclyde

making a play out of scholarship

writing poems on the side

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Last Chance to get tickets! DRF Event 7! May 17th join Emma Pullen and Laura Mora alongside Lucia Amber for their talks “Cripvertising: Paralympians’ gendered representations of disability on Instagram” and “Reimagining rehabilitative futurism using the social model and other ingredients”

Time: Noon – 2pm

To register: https://www.eventbrite.co.uk/e/copy-of-drf-seminar-series-20212022-event-7-tickets-328135300517

Talk 1, Title: Cripvertising: Paralympians’ gendered representations of disability on Instagram

Talk 1, Abstract: Paralympic athletes increasingly turn to social media platforms to promote the Games, brand the self and raise disability awareness. In doing so, Paralympians create images that challenge dominant stereotypes around disability, particularly at the intersection of gender and sexuality. Through a visual media analysis, we examine the self-representations of the 22 most popular female UK Paralympians on Instagram and the ways in which they use postfeminist discourse to rebrand and popularise disability. Our paper marks the introduction of crip theory to this area of scholarship to critically examine the role of biopolitical discourses in shaping the conditions under which disability is granted visibility in the attention economy. By coining the term ‘cripvertising’, we develop a feminist account of newly emerging archetypes of disabled femininity that are underpinned by a hierarchy of heteronormative attractiveness and marketability. In highlighting this new normativity, we interrogate these images’ emancipatory potential for wider disability communities.

Talk 2, Title: Reimagining rehabilitative futurism using the social model and other ingredients

Talk 2, Abstract:

I want to take you with me to create something new. I’m not sure what it is yet, but I do have some ingredients that I have encountered along my academic journey. Whilst each element exists on its own, when blended together they will hopefully transform each other, either by complimenting or clashing for something unknown to emerge.

These are the ingredients:

Rehabilitative futurism is a concept I first heard at DRF some years ago, thanks to Harriet Cooper. It imagines a future world where illness is eradicated from the body through medical intervention. This is a process that disabled children endure in the name of normalisation and improved futures. 

The well known social model, that separates disability and impairment, states that it is not bodies that are in need of change, but society. It advocates for adapting environments and changing attitudes to include different bodies, without those bodies changing.

The personal recovery model of mental illness is a user-led concept that rejects the idea that recovery has to equal a medicalised cure. Recovery is all about living well with mental illness however it is apparent. It advocates for social inclusion and other ways of valuing people’s worth out of the norms of economic worth. 

This discussion will go into more detail about each ingredient and then blend them together, asking the questions: what if we transformed rehabilitative futurism with the social model? How about we add the recovery model too? What would that look like?  

Whilst I may go some way to offering answers, my hope is that you will join in and create something new with me!

I am Lucia Amber (Was Radcliffe and Coello-Lage in previous incarnations). I studied a Ba in Education and Disability Studies at Sheffield Hallam University, graduating in 2013. I have since become settled on the Msc in Mental health recovery and social inclusion, an online-only course run by the University of Hertfordshire. The course mixes people living with mental ill-health and those who surround us, professionally and personally, and works from a similar lens as disability studies.  I am interested in the power of language and words, as well as creating new lenses to see the world.

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DRF Event 7! May 17th join Emma Pullen and Laura Mora alongside Lucia Amber for their talks “Cripvertising: Paralympians’ gendered representations of disability on Instagram” and “Reimagining rehabilitative futurism using the social model and other ingredients”

Time: Noon – 2pm

To register: https://www.eventbrite.co.uk/e/copy-of-drf-seminar-series-20212022-event-7-tickets-328135300517

Talk 1, Title: Cripvertising: Paralympians’ gendered representations of disability on Instagram

Talk 1, Abstract: Paralympic athletes increasingly turn to social media platforms to promote the Games, brand the self and raise disability awareness. In doing so, Paralympians create images that challenge dominant stereotypes around disability, particularly at the intersection of gender and sexuality. Through a visual media analysis, we examine the self-representations of the 22 most popular female UK Paralympians on Instagram and the ways in which they use postfeminist discourse to rebrand and popularise disability. Our paper marks the introduction of crip theory to this area of scholarship to critically examine the role of biopolitical discourses in shaping the conditions under which disability is granted visibility in the attention economy. By coining the term ‘cripvertising’, we develop a feminist account of newly emerging archetypes of disabled femininity that are underpinned by a hierarchy of heteronormative attractiveness and marketability. In highlighting this new normativity, we interrogate these images’ emancipatory potential for wider disability communities.

Talk 2, Title: Reimagining rehabilitative futurism using the social model and other ingredients

Talk 2, Abstract:

I want to take you with me to create something new. I’m not sure what it is yet, but I do have some ingredients that I have encountered along my academic journey. Whilst each element exists on its own, when blended together they will hopefully transform each other, either by complimenting or clashing for something unknown to emerge.

These are the ingredients:

Rehabilitative futurism is a concept I first heard at DRF some years ago, thanks to Harriet Cooper. It imagines a future world where illness is eradicated from the body through medical intervention. This is a process that disabled children endure in the name of normalisation and improved futures. 

The well known social model, that separates disability and impairment, states that it is not bodies that are in need of change, but society. It advocates for adapting environments and changing attitudes to include different bodies, without those bodies changing.

The personal recovery model of mental illness is a user-led concept that rejects the idea that recovery has to equal a medicalised cure. Recovery is all about living well with mental illness however it is apparent. It advocates for social inclusion and other ways of valuing people’s worth out of the norms of economic worth. 

This discussion will go into more detail about each ingredient and then blend them together, asking the questions: what if we transformed rehabilitative futurism with the social model? How about we add the recovery model too? What would that look like?  

Whilst I may go some way to offering answers, my hope is that you will join in and create something new with me!

I am Lucia Amber (Was Radcliffe and Coello-Lage in previous incarnations). I studied a Ba in Education and Disability Studies at Sheffield Hallam University, graduating in 2013. I have since become settled on the Msc in Mental health recovery and social inclusion, an online-only course run by the University of Hertfordshire. The course mixes people living with mental ill-health and those who surround us, professionally and personally, and works from a similar lens as disability studies.  I am interested in the power of language and words, as well as creating new lenses to see the world.

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One week to go! DRF Event 6! May 9th join Toni Paxford and Shahd Alshammari for their talks on “Crip time and disability” and “Writing Disability and Narrating Pain: A Middle Eastern Perspective”

Time: 2-4pm

Presenter 1, Name: Toni Paxford

Presenter 2, Name: Shahd Alshammari

To register: https://www.eventbrite.co.uk/e/drf-seminar-series-20212022-event-6-tickets-306289378777

Talk 1, Title: Crip time and Disability

Talk 1, Abstract:

In this talk I will share the findings of my undergraduate research which examined how youth and community work practitioners in a small organisation understand the concept of crip time.

The research focused on the three research questions: What do practitioners understand about crip time theory; How does crip time theory effect practitioners’ practice; and how can practitioners use crip time theory to inform their practices with young people with invisible illnesses. The data was collected through using insider, action, qualitative research methods, whilst the literature utilised a plethora of different sources including disability studies and youth and community work literature.

In this talk I will discuss my methods, findings, and recommendations in order to continue the conversation around crip time and youth work as well as devise a tangible way forward to encourage and promote positive change in practices.

Talk 2, Title: Writing Disability and Narrating Pain: A Middle Eastern Perspective

Talk 2, Abstract: In this talk, I discuss Disability Studies from a non-Western model. Disability Studies is almost unheard of in the MENA region. As a scholar living with disability, I have paved the way throughout exploring how disability features in literature, Middle Eastern television and pop culture, and I have also written the first memoir from the MENA region about disability and academic ableism. I share the process of writing disability and discuss how Western publishers received the work. I will examine some of these responses critically to explore how disability from a non-western perspective is received both in the West and the MENA region. A personal perspective is offered to navigate this complex terrain and I conclude my talk with an excerpt from Head Above Water: Reflections on Illness (Neem Tree Press, London, 2022).

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Virtual Workshop: “Meeting the screenwriting skills gap: Evolving innovation in the British film industry through mental health and disability equality”

*Posted on behalf of Jason Lee (CJP Lee), Professor of Film, Media and Culture and Chartered Psychologist*

When: Wednesday May 18th. 1-2.30pm

If you want to sign up to this event please visit the eventbrite page

This workshop is relevant to everyone who is interested in teaching and researching film and TV, PG students, and those working in the film and TV industries. We hope those who attend will become involved in the films we are going to make. Held on MS Teams, the first workshop is suitable for anyone who is interested in the film and TV industry and employability, featuring guest speaker Dr Christine Parker, feature film screenwriter, director, and academic expert on neurodiversity.

Jason Lee (CJP Lee), Professor of Film, Media and Culture and Chartered Psychologist, has been awarded a British Academy Innovation Fellowship (£153,000), to work with the Hollywood, UK, Bollywood film company James Bamber Productions on this project.

This higher education (HE) and industry collaboration tackles a dual need through meeting the UK film industry’s screenwriting skills gap by enabling those with mental ill-health and/or disabilities to join the field. The industry struggles to find employees who have the necessary skills in screenwriting.

This project analyses this opportunity through expanding the knowledge of mental health and disability in HE and the film industry advancing screenwriting quality and employment. Statistically, those with disabilities are the most discriminated against group in the industry. The reasons for this are addressed with solutions implemented through critical and creative outputs meeting this urgent two-fold need for equality and skills.

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New Book! Head Above Water – Shahd Alshammari

Book cover for Head above Water by Shahd Alshammari

Those who survive know that there is a story to tell.

“Shahd’s…sensuous prose explores the manipulation of memory, the question of time, and gender politics…intricacies of love, …body, motherhood, the pervasive power of language, the power of women’s education, and synergy between Professor and student. It is a brave book.” – Jokha Alharthi, Author of Celestial Bodies, winner of the International Man Booker Prize

“An important piece of life writing – Shahd Alshammari’s memoir breaks new ground in representing the lives of disabled Arab women.” – Dr. Roxanne Douglas, University of Warwick

#MultipleSclerosis #womensbodies #health #nonfiction #memoir #coping #healing #survival #family #friendship #MiddleEasternCulture #disability

Head Above Water takes us into a space of intimate conversations on illness and society’s stigmatization of disabled bodies. We are invited in to ask the big questions about life, loss, and the place of the other. The narrative builds a bridge that reminds us of our common humanity and weaves the threads that tie us all together. Through conversations about women’s identities, bodies, and our journeys through life, we arrive at a politics of love, survival, and hope.Author: Shahd Alshammari has Multiple Sclerosis. After gaining her PhD in the UK, Alshammari became an Assistant Professor of Literature in Kuwait. Her research interests focus on women with mental illness in literature. Alshammari is especially interested in the concept of hybridity, having been born to a Bedouin father and a Palestinian mother. She is also interested in Disability Studies and the correlation of disability studies with identity in the Arab world, having been diagnosed with Multiple Sclerosis at the age of 18.

  • Engaging and enriching understanding of illness and disability
  • Provides a greater understanding of the Arab world and illness in the Middle East
  • Author lives with Multiple Sclerosis and has experienced living with disability herself
  • The book deals with relationships and discrimination in the context of disability
  • Deals with topical issues like women’s bodies, women’s health issues, identities, family, friendships, cultural taboos; misogyny; Middle Eastern culture
  • Emphasizes the importance of human connection and each of our personal stories

Hardback/ Paperback

978-1-911107-39-2 /978-1911107-40-8

30 May 2022

£24.99 / £10.99

EBook / Audiobook

978-1-911107-41-5/ 978-1-911107-42-2

30 May 2022

£9.99 / £24.99

Market General/Trade

Subject: Memoir, Disability, Medical Humanities

All Worldwide Rights, Excluding Arabic Rights Are Available.

@neemtreepress @neemtreepress

neemtreepresswww.neemtreepress.com

Foreign rights contact Wampe de Veer at b.lit.agency@gmail.com   For US & Canada and select translation rights contact: Emily Randle at emily@randleeditorial.co.uk   Orders to:   UK,      Europe,      and      Rest      of      World:      Casemate      UK Tel: +44 (0)1865 241249 Email: trade@casematepublishers.co.uk
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DRF Event 6! May 9th join Toni Paxford and Shahd Alshammari for their talks on “Crip time and disability” and “Writing Disability and Narrating Pain: A Middle Eastern Perspective”

Time: 2-4pm

Presenter 1, Name: Toni Paxford

Presenter 2, Name: Shahd Alshammari

To register: https://www.eventbrite.co.uk/e/drf-seminar-series-20212022-event-6-tickets-306289378777

Talk 1, Title: Crip time and Disability

Talk 1, Abstract:

In this talk I will share the findings of my undergraduate research which examined how youth and community work practitioners in a small organisation understand the concept of crip time.

The research focused on the three research questions: What do practitioners understand about crip time theory; How does crip time theory effect practitioners’ practice; and how can practitioners use crip time theory to inform their practices with young people with invisible illnesses. The data was collected through using insider, action, qualitative research methods, whilst the literature utilised a plethora of different sources including disability studies and youth and community work literature.

In this talk I will discuss my methods, findings, and recommendations in order to continue the conversation around crip time and youth work as well as devise a tangible way forward to encourage and promote positive change in practices.

Talk 2, Title: Writing Disability and Narrating Pain: A Middle Eastern Perspective

Talk 2, Abstract: In this talk, I discuss Disability Studies from a non-Western model. Disability Studies is almost unheard of in the MENA region. As a scholar living with disability, I have paved the way throughout exploring how disability features in literature, Middle Eastern television and pop culture, and I have also written the first memoir from the MENA region about disability and academic ableism. I share the process of writing disability and discuss how Western publishers received the work. I will examine some of these responses critically to explore how disability from a non-western perspective is received both in the West and the MENA region. A personal perspective is offered to navigate this complex terrain and I conclude my talk with an excerpt from Head Above Water: Reflections on Illness (Neem Tree Press, London, 2022).

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Last Chance to get Tickets! DRF Event 5! April 22nd, 2-4pm. Join Anna Slebioda and Tekla Babyak for their talks on “Edith Stein`s philosophy as a new framework for disability studies” and “Authoring Access: Navigating Scholarly Publishing with Disabilities”

Date: April 22nd 2022

Time: 2-4pm

Presenter 1, Name: Anna Slebioda

Presenter 2, Name: Tekla Babyak

To register: https://www.eventbrite.co.uk/e/drf-seminar-series-20212022-event-5-tickets-306284815127

Talk 1, Title: Edith Stein`s philosophy as a new framework for disability studies

Talk 1, Abstract:

Edith Stein was a Jewish woman – philosopher who converted into Catholic and became a nun. However, she died in a concentration camp along with other Jewish people. This indicates her faithfulness to primary identity. –

This as well as her academic work, for instance on woman and her place in the society provide a new framework for analysing femininity in disability.

The presentation covers biographical facts as well as summary of Edith Stein`s philosophy. These elements are next linked to analyses from disability studies area so that at the end a novel analytical framework is presented.

Talk 2, Title: Authoring Access: Navigating Scholarly Publishing with Disabilities

Talk 2, Abstract:

Disability accommodations for academic authors are unauthorized. Submission guidelines for book proposals and journal articles never offer any way to request accommodations. Indeed, disabled authors have no legal right to receive accommodations. Academic writing falls outside the capitalist purview of the ADA, which only covers paid work.

How, then, might disabled authors advocate for accessibility? What strategies could be used to communicate access needs when submitting work to peer-reviewed academic venues? These questions are large, even overwhelming, in the face of the ableist rigidity of the scholarly publishing industry. I will approach these questions through a personal case study: my self-advocacy for disability accommodations when submitting my work for academic publication.

In this case study, I theorize my positionality as an academic writer who has multiple sclerosis. One of my MS symptoms is an anxiety disorder caused by neurological damage to the fear centers in my brain. The disability accommodation that I need is for the editors and the peer reviewers to be encouraging and supportive when giving me feedback. My current strategy is to contact editors about my access needs before submitting my work to them. I do not send them my work unless they commit to honoring my access needs.

These interactions subvert power hierarchies in a potentially liberatory way. I disrupt (and “crip”) the standard script for author-editor interactions, for my initial exchanges with editors are about my access needs rather than my manuscript. Thus, during these initial exchanges, editors end up hearing more about my disability than about my academic research. Some editors have responded well to this dynamic, while others have refused to take my access needs seriously. What emerges from these interactions is the difficulty, but also the hopeful potential, of author(iz)ing one’s own disability accommodations as an academic writer.

Biographical information

Tekla Babyak (PhD, Musicology, Cornell, 2014) is an independent musicologist with multiple sclerosis. The ableist workforce has prevented her from finding any form of stable employment. Currently based in Davis, CA, she is an advocate for the inclusion of disabled independent scholars in academia.

Her work falls broadly into two categories: disability activism in musicology, and research on 19th-century musical aesthetics. As discussed in her Current Musicology article “My Intersecting Quests as a Disabled Independent Scholar,” her activist work combines practical and philosophical ideas about how to uplift disabled voices in music studies. Her musicological research interests include hermeneutics, disability studies, and German and French aesthetics. Recent and forthcoming publications include chapters in Historians Without Borders (Routledge) and Rethinking Brahms (Oxford University Press).