An update from Utting Wolff Spouts. We are working hard to complete a book project, Transitioning into Adulthood with a Chronic Disease, which started in early 2015 when we published our first call for participation, looking for adults who were willing to share their life stories with us about becoming ill as children or teenagers and never recovering (see A proposal )  Why is the book still not completed let alone published?

It has been a time of transition for us too, since that first call. Poorly ourselves, we have sailed the stormy waters of teenage angst/parenting, staying sane through mind-boggling assessments by ATOS and Maximus, alongside attempts at participation in the able-bodied world in order to insert our knowledge and experience into contexts where disability does not officially exist or is thought to affect imagined others. Contexts where ‘normal’ is celebrated as if it were perfectly acceptable not to include anybody in need of accommodation, in fact, where the norm is to describe to the disabled academic (Claudia in this case) what their problem is, or even what causes their illness. Such treatment occurred during the writing of a chapter for a Swedish academic anthology (). When students and lecturers open the anthology and hopefully read and discuss my chapter, they will be oblivious to my scholarly competence being questioned, not on the basis of my research, but because I was writing from the position of a sick and disabled academic on exclusion of the sick and disabled rather than writing from a position of an able-bodied academic writing about the identical topic, implicitly questioning my competence in the field. Had I been able-bodied I would not have had to contend with a proof-reader scribbling ableist questions concerning disease definitions, and ‘advice’ in the margins of my proofs (while she happily admitted ‘I don’t really know anything about this’, also in the margins). During work-in-progress, I remained quiet, my hands tied by responsibility to the research collective, with my colleagues, by stark contrast, enjoying nothing but respect from the publisher.

Suffering in silence will not lead to change. Achievements, humble as they may seem, can be significant on a professional, educational, academic and, to an extent, societal and political level, so I refuse to pretend that the process was a smooth ride. Alas, trying to smash disability prejudice when working with and within a group of able-bodied academics on the one hand and a mainstream academic but uninformed publisher and their staff on the other, is to some extent unsafe for the disabled academic, and that, too, must be acknowledged. Since almost any process that ends in completion of a work is going to be fraught with ableism unless the people involved have personal experience of exclusion due to disability there will be circumstances requiring energy and time-consuming discussions which able-bodieds escape altogether. Sometimes contested expressions and whole lines will have to be fought over to avoid perpetuating myths and preconceived notions about already heavily stigmatised groups. These battles are easy to lose when ill. The hours of unpaid work required to pave the way for the actual work is daunting and dangerously erodes the possibility of being an agent for change.

One of the most surprising aspects of working on this book together with old colleagues was the realisation how vulnerable I had become. My self-confidence evaporated after encounters with the publisher and the proof-reader, I became dry mouthed whenever I saw an email from the editors. Sometimes I felt so exposed that I didn’t dare open missives for days. By speaking out about these experiences, hopefully other academics can take comfort from there being those who, on occasion, stagger out of the echo chamber, an act that can be challenging in itself as there is a disease to cope with at the same time as we are trying to break through the complacency of the ableist workplace or whatever context it is we insert ourselves in out of a longing for change and solidarity for those with even less agency.

This first blog post of 2017 (how is it July already?), then, is a sign of life, signalling a belief in the future amidst the detritus of moving house – dozens of cardboard boxes and bin bags filled to bursting. It is also a pledge to our participants that the book on Transitions into Adulthood will be completed with the utmost respect for each participant’s valued contribution. In the meantime, our love and heartfelt best wishes and thanks to the participants in the book project as well as a big thumbs up to Simon Duffy of the Centre for Welfare Reform through which the book will be published.

Claudia & Geoff

©ClaudiaGillberg&GeoffreyJones2017

NB: Your work doesn’t become less valuable when correctly quoting ours and others’, so please try to take on board our point about the importance of mutual acknowledgment and respect. 

For more background information on the book

Education and Independent Living

For more reading on Academia and Disability

Collaboration and unwanted knowledge: revisiting feminist pragmatism