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Interview time! We got some nice feedback about the interview we did with the with EPSRC Assistive Sandpit organiser Anna Angus-Smyth – it turns out that my PhD and postdoc readers quite enjoy finding out what makes funders tick.  So today we have an interview with Paul Woodgate from the Wellcome Trust- who I’m interviewing about the Bioethics work that the Wellcome Trust funds.  Enjoy!

Me: So The Wellcome Trust have funded a wide range of projects from the classically medical ‘ Coma, Consciousness and Serious Brain Injury: medical humanities and decision making’, to the much more social and immediate ‘Interpreting the Mental Capacity Act (2005) in mental health care.’, however there does appear to be a slant in the projects towards clinically-focused research rather than looking at existing bioethical issues in the general population, is this the result of the trust’s general focus or is it more that such applications tend to be much bigger, longer-term and more naturally suited to larger funders like the Wellcome Trust?

Paul: There is certainly no clinical preference, in fact one of our motivations in recently expanding the remit/parameters of this funding stream to support research that ‘seeks to consider social, economic and cultural factors that influence health, biomedical or health research, the development and implementation of healthcare practices, and health interventions’ is with population level issues in mind.  One example of a research that has recently been support that might fit into this category is David Stuckler’s Social welfare and public health: analysing quasi-natural experiments from the 2007 recession.  Aside from setting out these broad parameters, we are mainly a response mode funder.  That is to say researchers are invited to apply around any theme they wish (so long as it is health or wellbeing related); our Committees judge what the best proposals are.

Me: One of the problems of scientific reporting is that flashy graphics and (interesting) toys like 3d-printing tend to get all of the media coverage, while some areas such as Bioethics are inherently ‘unsexy’ from a media perspective – with that in mind, what’s the project that you’ve been involved with that you think the public should really know about?

Paul: Professor Theresa Marteau’s Centre for the study of incentives in health is a large award we funded in 2008 and an excellent example of interdisciplinary working.  The three main partners on this programme, a psychologist, a philosopher and an economist took as a starting point that Governments increasingly use financial and ‘payment in kind’ incentives to encourage people to act in individually and socially beneficial ways, particularly in the context of health policy. Yet even when effective in changing behaviour, such approaches have attracted strong criticism for being coercive and undermining autonomy, personal responsibility and equity.  The integrated programme of research at the Centre for the Study of Incentives in Health (CSI Health) examined these criticisms from a range of disciplinary perspectives, in order to address the central question: when is it right to use financial incentives to improve health?  One particularly well reported case study/experiment they investigated/undertook was about whether it is right and indeed whether it is effective to incentivise pregnant women not to smoke by giving them food vouchers.  This type of research covers issues which the public would find engaging and could inform future policy making in public health.

Me: A common criticism of long-term academic projects is that there is comparatively little oversight and evaluation of how effectively universities are spending their money – with a surprising number coming nowhere near the grand plans of their original outline. I wonder if we could put a more positive spin on this – can you tell me about a Wellcome Trust project that wildly exceeded it’s initial ambitions?

Paul: There is always risk involved when we fund a research project.  One benefit of being a well resourced independent charity is that we can take maybe greater risks than public or smaller funders.  Our Committees still need to be convinced that proposals are feasible but will consciously take risks.  Of course a consequence of funding ambitious and innovative projects is that sometimes the outputs do fall short.  Two examples of people who’ve exceeded:

Madeleine Campbell Bioethical decision making in the clinical practice of assisted reproductive techniques in non-human mammals.  Dr Campbell has a particular interest in equine reproduction (where bioethical analyses have been surprisingly rare) and the uses of animals in entertainment.  The detail of what this grantholder initially proposed is confidential but if you take a look at her Royal Veterinary College homepage you’ll see an array of activities in which she is involved which have certainly exceeded expectations. You could say Madeleine was a good horse to back.

Tom Douglas The Dual-Use Dilemma in Biomedical Science: An Ethical Analysis.  With this fellowship the Wellcome Trust undoubtedly backed one of the world’s leading early career bioethicists.  Dr Douglas found in favour of a qualified position on the dual use dilemma (that scientists should take into account the potential for misuse of their work); against many of the objections to the use of synthetic biology; and qualified support for the voluntary use of neuroenhancements.  He published about of these findings and not exclusively with colleagues from his own centre.  He actually generated sixteen peer reviewed articles and five book chapters in three years which is a very high level of productivity.  He has since obtained a larger, early-mid career targeted grant (a New Investigator Award) to support a project entitled Neurointerventions in Crime Prevention: An Ethical Analysis.

Me: Many of my readers are early (and some not quite so early) stage researchers who are well aware of how competitive your application process is – what’s the one thing that you see in funding applications that you really wish applicants would avoid?

Paul: How long have you got?  Seriously, you’ve asked for one thing to avoid so I’ll offer one rather than a long list of dos and don’ts.  Please ensure that when you submit a proposal (even if it is just an outline) that you avoid a situation where someone reviewing it has to keep re-reading it in order to understand what it is that you are trying to do.  In other words please do not assume any knowledge on behalf of the reader!  One way of avoiding this pitfall is to ensure that you share your project description with people who do not work in your field before you submit it to us.

Interview time!

Liat Ben-Moshe is Assistant Professor of Disability Studies at the University of Toledo. She holds a PhD in Sociology with concentrations in Gender Studies and Disability Studies from Syracuse University. Her recent work examines the connections between prison abolition and deinstitutionalization in the fields of intellectual disabilities and mental health in the United States.

She’s also one of the editors of the newly released Disability Incarcerated: Imprisonment and Disability in the United States and Canada which ‘offers an outstanding collection of interdisciplinary scholarship examining the incarceration and segregation of people with disabilities’. Liat very graciously agreed to make time to be interviewed about the book, and left me wanting to find out so much more about the topic.  I hope you feel the same way.

You’ve been working on this area for a while, indeed your PhD tackled related subjects –  with the publication of  Disability Incarcerated, do you feel that this particular disability research area is starting to get more traction with the wider community or is it a natural update of the field?

One of reasons this book came about was because we felt there was a lacuna in the field, in multiple fields actually.

I write a little about this lacuna in my piece in Critical Sociology (the article is called Disabling Incarceration). When I started doing this research about the connections between prison abolition and imprisonment to deinstitutionalization (through the lens of disability studies) I didn’t find very many sources to draw on. People that did really important work in researching and trying to put an end to the Prison-Industrial-Complex were not very good at incorporating disability justice or disability studies framework into their analysis or activism. If disability was mentioned, it was only in the sense that there are many people with disabilities in prisons, especially those who are categorized as ‘mentally ill’. But disability wasn’t used as an analytic to discuss processes like criminalization or incarceration more broadly, which is exactly what we set out to do in this anthology. On the other hand, people who did organizing or research in disability studies were not very well versed in understanding the ways in which incarceration had been a part of the disability experience for a few centuries now but had become neutralized and unmarked in many ways. So this collection is also a way to ameliorate that.

When we, Chris Chapman and I, (and later Allison Carey as well) first began thinking of this book we were trying to come up with as many people as possible who do this work, especially from an intersectional lens. What I mean are people who examine both disability and incarceration or decarceration from a critical stance that takes into account other forms of privilege and oppression in relation to race, gender, settler status, sexuality, nationality etc. and although I don’t think each individual chapter does all of these things, I think the collection achieves this as a whole. So we hope that this book becomes a conversation starter (as opposed to the definitive word on the topic) and that it generates more interest in this area because there is definitely a dire need for it, in terms of intersectional scholarship but also in terms of (as the ADAPT’s motto states) ‘freeing our people’.

To choose an example at random from the book – you make the case that we should view group homes as incarceration – this can be a little difficult for laypeople to get their heads around, particularly when many care home users may flourish in the new environment – can you give us a short overview of your perspective?

In order to answer this question properly, let me quote a few paragraphs from our editor’s introduction to the book, where we introduce our framework (with its caveats):

Regarding group homes for example, we state on page 12:

“The large-scale institutionalization of disabled people, where it is rationalized as necessary specifically because of a disability, has declined since the 1970s in the United States and Canada. And as institutions declined, community-based services emerged. But these have not offered the panacea that was desired. Like Ferguson noted regarding the similarities between the almshouse and the institution, so too are there similarities between community-based services and medical institutions. Community-based services are often run with a similar medical model and an asymmetry of power between staff and consumers (Drinkwater 2005; Rothman and Rothman 1984). They at times demand that people earn what should be basic rights to movement, privacy, and choice (Taylor 1988). They often create artificial homes and relationships without the true qualities (McKnight 1995).”

We also discuss what we mean by ‘institutionalization’ (on page 14):

“Taking into account the wide range of sites that have evolved from the earliest undifferentiated confinements, today we need to ask: What is an institution? What is institutionalization? What is its relationship with imprisonment and other forms of physical confinement? Among what he called total institutions, Goffman (1961) included sites that featured no locked doors or bars on the windows. And yet his work may not adequately address the diverse mish-mash of institutional sites in our communities today. Centering these sites’ relations to penal imprisonment, Foucault termed this mish-mash “the carceral archipelago” (1995). We are nuancing this slightly to call it an “institutional archipelago,” made up of diverse services and spaces that all trace back to undifferentiated confinement and its ongoing reform— – in which penalty is no more or less central than medical care or the right to education. However diverse, these sites also share something in common. It is not stated purpose, and it is not degrees of freedom of movement. These would have one separating the penal from the medical from the educational, or separating closed sites from community services, none of which honor the shared genealogy of the institutional archipelago or the resonances still felt across its diverse sites today”.

Lastly, we discuss what we mean by ‘interlocking analysis’ by explaining that:

“To propose a more thoroughly interlocking history is to suggest that the similarities and the distinctions across sites are important to consider, in terms of rationality, practice, and the effects on people who are incarcerated in diverse sites of confinement. For example, at least on paper the penal system offers certain protections to the accused and the prisoner, such as due process during the trial and sentencing procedures, a sentence of a specified duration, and protection against cruel and unusual punishment, medical institutions allow the compulsory admittance of patients against their will based only on a medical diagnosis, an indefinite time of commitment, and ‘treatments’ that can be painful and harmful, such as extended isolation, physical restraints, and electric shock ‘therapy’ (Conrad and Schneider 1992; Goffman 1961; Snyder and Mitchell 2006; Szasz 2009).

Broadening the historical and institutional lens also enables innovative readings of historical changes. We do not wish to diminish the gains of the closure of many institutions. This has taken place, however, at roughly the same time as an unprecedented rate of American prison expansion beginning in the 1980s—and we want to encourage disability and prison activists alike to attend more closely to what this means and what can be done about it.” (page 15-16).

Love it! I’m normally on other end of the ‘as I wrote before’ response Now, the book has been described as ‘activist scholarship’ (frankly I’m annoyed that I don’t get described that way), is that a label you identify with, or do you believe that academics and researchers should stay detached from their field?

I wholeheartedly endorse the label of scholar/activist or activist scholarship. I came to the field of Disability Studies as someone who identifies both as a disabled person and also as an activist. I came to undertaking this research on the intersections between prison abolition (the demand to abolish the current system of incarceration as well as the carceral logics that sustain it) and deinstitutionalization (the demand to close down institutions for people labeled as intellectually and psychiatrically disabled) as someone who has a stake in these movements, thinking that they could learn a lot from each other. For instance, deinstitutionalization shows us that decarceration is possible and already happened and demonstrates some ways by which we can do it again, but also some of the pitfalls of doing it in certain ways and not others. So I regard this research as not just being about activism, but as being activism. It is meant to make us think, to question, but also to incite change.

Interview time!

I’ve been hearing a lot about the EPSRC Assistive, Adaptive and Rehabilitative Technologies Sandpit – a research event that is attempting to get rising stars of assistive technology all into the same place for a week in September to see what ideas spring up. More than one of you mailed in to tell me about it (largely, I suspect, because it sounds like a cross between TooManyCooks and the Hacker Model of Disability) so I got in contact with one of the organisers, Anna Angus-Smyth, to find out a little bit more about it.

JR: So I’ve had more people email the blog about this sandpit than any other issue (which I suspect says much more about my readers than anything else), it’s clearly been of interest to the assistive technology community. Did you know that there was such a broad range of interest and potential expertise when you put the call together or were you responding to the identified need? I guess the question really is: is this call because you recognised there were great people waiting to do work, or because you saw that there was great work that needed to be done?

AAS: I think the answer is a combination of the two, we think there are great people out there, and great clinical needs to be solved, but we rarely see new and innovative solutions in the form of research proposals. It seems that often researchers in this field are driven by clinical pull or by technological push, but it seems that there is a gap where the two could be joined together to give innovative research solutions to real clinical problems. A sandpit was motivated by the idea that we could bring together people who understood both sides in order to identify both real challenges where Engineers and Physical Scientists could make a difference, but also potential new and exciting solutions to these challenges.

JR: The call mentions that it’s trying “to engender a radical change in the research undertaken in this field”. Many of us agree that a radical change is needed – but we tend to disagree on the specifics of the new direction – does the ESPRC have a roadmap for how it sees researchers in this field fitting into the overall social or research context?

AAS: A sandpit by nature is an activity without a pre-defined outcome, the intention is to challenge researchers to think about new and exciting research which could meet social and medical needs. As a consequence, we have no prescriptive ‘roadmap’ to describe the outputs we expect. Saying that, we are funders of new engineering and physical sciences (within which which I also include ICT, maths, and manufacturing research) research, and hope that the sandpit will produce a range of novel technologies and ideas which are informed by the medical context, but not necessarily ready for clinical use.

In order to for the sandpit attendees to truly identify and think of new solutions to clinical challenges they will need to be a diverse group, who perhaps inherently do not have a common ‘roadmap’ for the field, and this will be one of the key challenges of the event. As a consequence, it is important that any applicant, regardless of their background is willing to come into this with an open mind, understanding that they may need to think differently, and consider different questions to those within their usual frame of reference. However, we hope that together the attendees will be able to begin to think about common goals for the future of research in this area, and to understand how researchers from different disciplines can come together to tackle key issues.

JR: Assistive technology is a many-headed beast, would you say you particularly welcome applications from the researchers who see themselves with soldering irons and arc-welders, the researchers who see themselves as designers with whiteboards and artistic insight or the researchers who ground themselves in relationship of people and technology?

I think the key to your question is that research funded by this sandpit will need to be predominantly in the EPSRC remit. This does not mean that we only want applications from those ‘with soldering irons and arc-welders’, we really need to have attendees who understand the clinical need along with the design and manufacturing challenges involved, as I think that without finding a way to integrate these elements and researchers we cannot truly take the step forward that this area needs. This is exactly the reason why a sandpit was chosen as a mechanism to fund new research in this field! I also think that your question about those with ‘soldering irons and arc-welders’ deliberately mis-portrays the work of many engineers who work in, or could contribute to this field! Instead we need to think about how we can integrate those who research at the technological frontiers of robotics control and electrical engineering, materials engineering, manufacturing processes, HCI, machine learning, biomechanics, and wider medical engineering with those who understand the contribution these fields can make in the fields of assistive, adaptive and rehabilitative technologies.

For those of you interested in applying, and I suggest you do, the deadline is: 5th June and the application site is here.