Disabled always isolated (Letter to the National Post newspaper)

Re: Pandemic benefits and support


I am a Lyme disease patient who's been disabled due to the damage from this illness, especially because it took two years to be diagnosed.


My monthly gross earnings from CPP [Canada Pension Plan] is barely over $1,000, which is essentially half of the emergency response benefit. So many Canadians on disability struggle to make ends meet on such a limited income, and we also have to deal with chronic health issues, which often come with increased medical expenses. For the sake of space I won't touch on the mental-health aspects of living with chronic illness, which makes all of this harder.

Canadians living at home with disabilities are also isolated on a regular basis. When life gets back to normal for most people, we will be forgotten. We will still be at home, where we have always been.

Prior to the pandemic I reached out to my MP and MPP [Legislative Assembly of Ontario] about chronic illness and Lyme disease in our area and neither of them have even bothered to respond. I can't begin to describe how disheartening this is.

Aside from the further fear for our health and well-being that the coronavirus has inflicted among everyone, many people living with chronic illness have a higher risk of susceptibility to the virus.

It makes me incredibly sad to speak/write out loud that our disabled lives probably won't change. Things will go back to normal for everyone else and we will still be struggling: physically, emotionally, mentally and financially.

It is so upsetting to watch our prime minister come on TV every day and say "we hear you, we know you're scared. We are here for you and we're going to help you" and feel like he is talking to every Canadian except those of us at home, on disability, unable to work.

Having the government offer twice as much money—in the form of the emergency response benefit—to other Canadians, essentially makes me feel unimportant, undignified, unworthy and even more isolated.
Sara
 

Eavan Boland on Faith

“I remember driving down the Dublin roads, where the laburnum and lilac filled the verges with yellow and violet, and listening to my car radio. Something seemed to have happened that was not faith, and could not be called religion; that was short of hysteria and yet by no means rational,” wrote Eavan Boland in her January 12th, 1995 essay When the Sprit Moves. 

Boland described the summer of 1985, when a statue of the Virgin Mary appeared to move, and how an outpouring of belief challenged her preconceived notions of intellect. 

Eavan Boland died this week at age 75, a great loss to the world of poetry and letters. We’ll be sharing her essay throughout the month of May and we hope you will too.

 

Journal of Literary & Cultural Disability Studies:

Volume 14, Issue 1


Special Issue: Disability and the Emotions

JLCDS is available from Liverpool University Press, online and in print, to institutional and individual subscribers; it is also part of the Project MUSE collection to which the links below point. 

Articles

Introduction: Disability and the Emotions
David Bolt
https://muse.jhu.edu/article/748210

Chronic Pain as Emotion
Emma Sheppard
https://muse.jhu.edu/article/748211

Reconsidering the Role of Pity in Oscar Wilde's "The Star-Child"
Chris Foss
https://muse.jhu.edu/article/748212

Embracing Disorientation in the Disability Studies Classroom
Ryan C. Parrey
https://muse.jhu.edu/article/748213

Reflections on the Boom of Graphic Pathography: The Effects and Affects of Narrating Disability and Illness in Comics
Gesine Wegner
https://muse.jhu.edu/article/748214

Crip Feelings/Feeling Crip
Brady James Forrest
https://muse.jhu.edu/article/748215

Demanding Money with Menaces: Fear and Loathing in the Archipelago of Confinement
Owen Barden
https://muse.jhu.edu/article/748216

Comment from the Field

Disability and the Emotions, Seminar Series, Phase One, Centre for Culture and Disability Studies
Holly Lightburn
https://muse.jhu.edu/article/748217

Disability and the Emotions, Seminar Series, Phase Two, Centre for Culture and Disability Studies, Liverpool Hope University
Amy Redhead
https://muse.jhu.edu/article/748218

Book Reviews

Autistic Disturbances: Theorizing Autism Poetics from the DSM to Robinson Crusoe by Julia Miele Rodas (review)
Rachael Nebraska Lynch
https://muse.jhu.edu/article/748220

Cultural Disability Studies in Education: Interdisciplinary Navigations of the Normative Divide by David Bolt (review)
Lauren Beard
https://muse.jhu.edu/article/748209

The role of risk in relation to Special Educational Needs and Disability

Ms Sharon Smith, University of Birmingham

Date: 5 February 2020
Time: 2.00–3.30pm
Place: EDEN Arbour room, Liverpool Hope University, UK

Since the 1990s, there has been an increased focus within education on keeping pupils safe, and anticipating risks of problems, such as negative outcomes or future underachievement, resulting in the ‘at risk’ label being applied to some students, who then require greater observation and protection. Students with disabilities are often seen as more vulnerable than the general school population, subject to even greater monitoring and risk management than their peers. This seminar argues that the move within education towards risk management is problematic as students’ futures are calculated and managed and they are exposed to disciplinary power over their future outcomes. Yet the future of the other is not something that should be comprehended in the present, nor should there be any attempt to contain it. The future of others is not ours to control and should remain a mystery. This therefore requires the welcoming, rather than management, of risk in education.


Sharon Smith is a PhD student at the University of Birmingham, where she is researching the subjectivity of parents of children labelled with Special Educational Needs/Disability (SEND) and the impact of this subjectivity on inclusion.

This seminar is part of the Disability Futurity series organised by the CCDS in collaboration with Carleton University’s Disability Research Group, Canada:
•       27.02.19 Reading Down syndrome: past, present, future?, Helen Davies, Hope.
•       27.03.19 Art Education and Disability Futurity: Subjects on the Edge, Claire Penketh, Hope.
•       05.06.19 Disabled people and subjugated knowledges: new understandings and strategies developed by people living with chronic conditions, Ana Bê, Hope.
•       20.11.19 Living as if we already know what ‘human’ will be: exploring the anticipated futures of visual/deaf humanity and how they shape the present, Mike Gulliver, Hope.
•       22.01.20 Representations of Disability Experience in Live Theatre, seeley quest, Carleton.
•       05.02.20 The role of risk in relation to Special Educational Needs and Disability, Sharon Smith, Hope.
•       18.03.20 Exploring Duchenne Muscular Dystrophy in Time: Life, death, and futurity in rehabilitation, Thomas Abrams, Carleton.
•       08.04.20 Spectral Risk and the Future of Disability, Kelly Fritsch and Anne McGuire, Carleton.
•       22.06.20 Disability Histories and Futures of the Nation, Gildas Bregain, Beth Robertson, and Paul van Trigt, Carleton.

Disabled people and subjugated knowledges: new understandings and strategies developed by people living with chronic conditions

Dr Ana Bê, Liverpool Hope University

Date: Wednesday 5 June, 2019
Time: 2.00–3.30pm
Place: Conference Rooms 1 & 2, Liverpool Hope University, UK


This seminar provides a contribution to our understanding of the knowledges and strategies developed by people living with chronic illnesses, based on an empirical study conducted in England and Portugal. Disability studies has historically (and rightly) focused on mapping out and understanding disablism. The way disabled people relate to their bodyminds has only recently featured in the literature. Adding to this work, Dr Bê argues that disabled people constantly have to negotiate codes about the body, based on normative notions, which she terms normative corporality. The knowledges and strategies developed by disabled people are often unnoticed, or devalued, as we tend to value knowledges of the body that come from established systems of knowledge, or from the bodies our society deems normative. The concern is that the subjugated knowledges of disabled people are in danger of being unacknowledged in futurity.

Ana Bê is Lecturer in the Department of Disability and Education and a core member of the Centre for Culture and Disability Studies at Liverpool Hope University. She has published in Alter, Disability & Society, and The Routledge Handbook of Disability Studies.

This seminar is part of the Disability Futurity series organised by the CCDS in collaboration with Carleton University’s Disability Research Group, Canada.

For further information please contact Prof David Bolt: Email:boltd@hope.ac.uk

The latest evidence suggests that the DWP are stitching-up benefit claimants

Ms. Kerry-Anne Mendoza

Editor-in-Chief

The Canary

Just a short note to commend you and The Canary for your superlative work in exposing the misdeeds of the DWP in various pieces, including this particular instance (The DWP was just caught red-handed 'fiddling' benefit sanctions figures | The Canary https://www.thecanary.co/uk/2018/07/19/the-dwp-was-just-caught-red-handed-fiddling-benefit-sanctions-figures/). But I would argue that the DWP aren't merely 'fiddling' benefit sanctions figures; I contend that they are continuing the nefarious practice of egregiously stitching-up benefit claimants—accusations of this sort were first made by whistle-blowers years ago (see references below) but there's an urgent need for them to resurface now, in view of your 'fiddling' piece and this latest Disability News Service story: DWP is asked why ‘not fit for work’ universal credit claimants are being sanctioned (https://www.disabilitynewsservice.com/dwp-is-asked-why-not-fit-for-work-universal-credit-claimants-are-being-sanctioned/). In 2015, when Esther McVey was employment minister, she blamed front-line Jobcentre staff for unfair benefit sanctioning practices instead of taking responsibility for the sanctioning regime and culture at jobcentres that she had created. She claimed that sanctions targets did not exist and that sanctions were only imposed as a “last resort”. Now, as Secretary of State for Work and Pensions, she and her DWP ministers have the authority to crack down on this type of malfeasance, but have chosen not to do so because it's being committed at their behest.

Disclosure: I am a 62 year old Disability Studies specialist—from Montreal, Canada—who since 2012 has been campaigning daily on Twitter, and communicating frequently with the UN's human rights office, in Geneva, on the welfare crisis impacting U.K.'s sick and disabled.

References: Stitching-up claimants is all part of the job, says Jobcentre insider - Ros Wynne Jones - Mirror Online https://www.mirror.co.uk/news/uk-news/stitching-up-claimants-part-job-says-3537051

Sanctions: staff pressured to penalise benefit claimants, says union | Society | The Guardian https://www.theguardian.com/society/patrick-butler-cuts-blog/2015/feb/03/sanctions-staff-pressured-to-penalise-benefit-claimants-says-union

It was my job to impose cruel benefit sanctions – that the DWP can’t justify | Angela Neville | Opinion | The Guardian https://www.theguardian.com/commentisfree/2016/nov/30/cruel-benefits-sanctions-dwp-job-advisers-evidence-work

Benefit sanctions: Britain's secret penal system | Centre for Crime and Justice Studies https://www.crimeandjustice.org.uk/resources/benefit-sanctions-britains-secret-penal-system

Benefit sanctions have failed: a Comprehensive Review is needed | British Politics and Policy at LSE http://blogs.lse.ac.uk/politicsandpolicy/benefit-sanctions-have-failed-a-comprehensive-review-is-needed/

[July 19, 2018] DWP is asked why ‘not fit for work’ universal credit claimants are being sanctioned https://www.disabilitynewsservice.com/dwp-is-asked-why-not-fit-for-work-universal-credit-claimants-are-being-sanctioned/

Yours very truly,

Samuel Miller

Statement from Canadian Samuel Miller on the ESA WRAG cuts and 'wrongful' welfare reform deaths in the UK

The ESA WRAG cuts have been in effect since April 3rd; the failure of the Guardian (which publishes articles on disability on an almost daily basis) and the British press to investigate how these new chronically ill and disabled claimants are faring as they struggle to survive on a below subsistence, JSA-level benefit, is a serious dereliction of duty.

If the media blackout on the ESA WRAG cuts persists much longer, the danger is that the DWP ministers will conclude that these vulnerable claimants are adequately coping on a reduced benefit and they'll promote that false narrative in the right-wing press.

Once the complete details of the personal support package (PSP) are obtained from the DWP, I will ask the UN CRPD and the Work and Pensions Select Committee to rule on whether the PSP a) fully mitigates the ESA WRAG cuts; and b) meets the subsistence needs of sick and disabled.

I intend to hold the DWP and its ministers accountable for 'wrongful' welfare reform deaths by facilitating a crowdfunded human rights lawsuit supported by UN reports, coroners, and the testimony of the Work and Pensions Select Committee. (I am a lifelong Canadian citizen and resident; I cannot sue your government directly, but I can lend my support in helping to arrange either a crowdfunded judicial review or lawsuit against the DWP).

Since 2012, I've been reporting voluntarily to the UN on the welfare crisis impacting Britain's sick and disabled.