News

Politics unusual: I interviewed the disability spokespeople for each of the four main parties, including the Minister of State for Disabled People Mark Harper

This is the first post in a five part series. The next post will be an interview with Cllr Star Etheridge who is the Disability Spokesman* for UKIP and  next Monday’s will be an interview with Stephen Lloyd, MP for Eastbourne and Willingdon representing the liberal democrats.  On that Wednesday, we’ll have Kate Green, MP for Stretford and Urmston and Shadow Minister for Disabilities and finally on the following Monday we’ll have an interview with Minister of State for Disabled People Mark Harper.

Today we have a little bit of background, a graph, and a couple of comedy moments with UKIP. 

This blog has never been party political.  If you wish to see the world in terms of right and left then you can see posts you might class as extremely right wing interventionist, free market, and extremely left wing among a general ‘let’s all help each other, open-data-will-save-us’ theme.  

This makes it pretty unusual.  Particularly as the larger UK disability blogs (see for example the list of the  Top 60 disability blogs)  regularly straddle the line between ‘Party activist blogging about disability’ and ‘disability activist blogging about politics’ (Sue Marsh being an excellent example). 

This is partly because of the things I write about – data, technology, open information, social issues, innovation and Things That Are Cool And New.  

However, 2015 is an election year in the UK (sorry US readers) and I think it would be good to be doing a certain amount of work putting out data, particularly disability relevant data, that can help people reason about the choices they should be making.

One of the advantages of being fairly widely read and being politically neutral is that you can get a certain amount of trust from all parties when you contact them.   So I contacted the four major parties, and requested an interview with their disability spokesperson.  These turned out to be: 

Arranging the UKIP interview was one of my more comedy moments, entirely because of my own biases…  You see the phone call went like this…

Operator: (A sensible sounding woman with a pleasantly patient telephone manner): Hello, UK independence party. 
Me: Hello, my name is Joe Reddington and I run a disability blog, I’m interviewing the disability spokespeople from each of the main parties and I’d wondered if you could put me in touch with your spokesperson?
Operator: Certainly, I know just who you need,  have you got a pen? 
Me: Yes
Operator: Now hang on, because it’s a little bit of a funny name… 

At this point I panicked.  I had a terrible thought that the name was going to be, ‘Pedro’, or ‘Siobian’,  possibly ‘Petra’.  I was horrifically aware of the possibility that the operator was going to be mildly racist over the phone and we’d have to have an argument. 

Me: “Ah…” 
Operator:  “It’s Star” 
Me: “Star. Wh-   Star?” 
Operator: “Yes Star Etheridge, her email address is…” 

I was unaccountably relieved, and I’d like to publicly apologise to the UKIP office staff for making a bit of a snap judgement based on this sort of thing

More to the point, Star was easily the most efficient of the people I corresponded with.  I had her interview entirely completed with in a couple of hours. The total time I was in the UKIP system (as in, the amount of time between first contact and interview, less the amount of time that emails were sitting in my inbox) was only 185 minutes. 

By comparison, this is the figures for the other three interviewees.

  • UKIP: 185 minutes.
  • Lib:  15 days
  • Labour: 11 days
  • Conservatives: 169 days

In defence of the Conservative Minister, I originally got permission to interview Mike Penning, and most of this delay was while he was Minister.  Plus there are difficulties co-ordinating the DWP and Mark Harper’s constituency office, and I imagine they had a little less free time and a bit more hoops to jump though than the others…. so we should definitely take that into account.  If you’d like to visualise this, here’s the graph:

graph
Time each political party took to answer interview questions….

For each interview I asked some questions unique to the candidate – and some that were largely the same across all interviews – I invited you to judge each of them on their answers. Some are more ‘political’ than others, and some more radical… 

Of course, if you’d like to receive the interviews a little earlier than everyone else, then by all means subscribe for updates 🙂

*I understand ‘Spokesman’ is the title used by UKIP and Cllr  Etheridge

 

Talkitt

Today’s guest post is from Nicole Caron, talking about a somewhat underreported part of communication disability – that of taking the ‘un’ about of ‘unintelligible’. If you like what you read I strongly recommend you visit their crowdfunding page…  Nicole was very patient with me on the back and forth of this guest post…  “No, my readers know all about that”, “No, my readers are much more technical than that…” and we had lots of fun haggling over the words.

Prof Pic

As regular readers of this blog will know, being unable to express and communicate your thoughts and feelings is an everyday reality for millions of people (1.5% of the Western World’s population) who suffer from speech disabilities.  This is very hard and frustrating for them and affects much larger circles in society such as families, caregivers, friends and society as a whole.
 
Until now the approach taken by developers of assistive technology for people with speech disabilities has completely bypassed voice, opting to use other modes of communication including communication boards that replace speech with symbols and images, head-tracking, eye-tracking, and switches. These solutions are often expensive, awkward and unnatural to use and degrade natural speech.  There are no products on the market today that allow people with speech disabilities to communicate using their voice.

At Voiceitt, we are trying to fill this gap.  Voiceitt is developing Talkitt, an innovative speech technology which is able recognize unintelligible language and translate it into understandable speech.  Ultimately, Talkitt is giving individuals with speech impairments their voice back!  Talkitt’s slogan is “This is my voice”.

voiceittkids
 
TalkItt is a voice to voice application that will translate distorted pronunciation into understandable speech. For example, a person can say “o-ko-la” and software will translate it to “chocolate”. Our software is in the development stage but we’ve had excellent results so far.  

Talkitt is speaker dependent and requires the user to create and maintain a dictionary of utterances and associated text and/or icons. The creation of the dictionary is the calibration phase. Once a dictionary is ready, a recognition stage may begin the application will perform pattern matching with enhancement of intonation features. If the user puts a word into the dictionary then the application will be able to recall that word at a later date and relay what the person is trying to say. The user will be able to access the application without help because during the recognition phase it is fully voice activated. The dictionary can be categorized so as to reduce mistakes by the machine. 

Our approach is based on simultaneous exploitation of both the content and the intonation of a speaker voice. Today’s speech recognition solutions are based on detection on the ‘word’ level and the ‘phenome’ level which are statistical based. When speech is non-standard, these approaches no longer work. Talkitt works in a different way. It is user dependent and language independent. The user builds a personal dictionary that contains their speech patterns and their meanings, and by using pattern matching, we look for the highest similarity between what the user just said and what exists in the dictionary.voiceittiloveyou

An example for one of VoiceItt’s innovative approaches is adaptive framing – an approach based on speech events that enables the division of speech to homogenic frames – this approach results in frames that contain the same vocal information but with varying durations. This duration is determined by the vocal information itself, thus allowing a much more accurate modelling and classification steps.
 
Talkitt does not require specialised hardware and can run on any computerized device (PC, tablet or smartphone) and can be integrated in Apps (browsers, games, communication boards) and assistive devices (smart phone, wheelchairs, emergency calls).  This software-based solution gained enthusiasm from field experts worldwide and has the potential to dramatically improve the quality of life of millions of people.

Designing the S’up Spoon

You may have noticed the S’up Spoon getting a certain amount of media attention in the last week or so.  It’s a Kickstarter project about assistive technology, and immediately interested me.  Eating is one of those things that should have long ago been solved for people with mobility issues and yet it hasn’t – so I’m inclined to support projects to redress the balance.  At the time of writing the S’up Spoon is at about £10,000 of the £33,000 needed to develop it further.  I asked Mark of 4c Design to talk us thought the design process in today’s guest blog. 

Mark Penver

I started as an intern at 4c Design shortly after graduating. At the start of the internship I was introduced to the intern project; the objective to work in a charitable capacity to meet the needs of a real life client. Past intern Hannah Jenkins worked with a young boy named Lenny with a rare lung disease to develop an ergonomic backpack to carry his oxygen supply.

 

I was introduced to Grant Douglas, who has cerebral palsy. Grant wanted a spoon that could hold contents more securely. Our first meeting was at Grant’s flat in Edinburgh as we felt it would be crucial to see his living environment. In all honesty, I was a little thrown. I’d grown up in a bit of a bubble in my home city of York. I was amazed with Grant’s attitude and his determination to improve things and make them work better for himself and others.

Grant demonstrated the problems he faced with eating and explained what his concept was: a spoon with a lid. The benchmark for success was allowing Grant to eat cornflakes!Screen Shot 2014-09-13 at 14.57.24

This is where the project started for us.

Back in Glasgow with a clear direction and lots of ideas, I began by understanding the problems by looking at video footage we took of Grant. I found that spoons just don’t allow for erratic arm movements; no matter how much you try to counterbalance the spoon it would never hold the contents securely. I became frustrated, as Grant is, with products currently available that claim to solve the problem but in some cases make it worse.

Grant_workshop

I hosted a brainstorming session with the 4c team where we looked at issues surrounding the spoon’s durability, social element and function. These are three key areas we needed to focus on for the product to work for Grant. The guys get a little excited with the idea of using mechanisms or clever materials, but it didn’t take long before we realised that the best route would be to have a simple form. The spoon would be a product Grant could keep forever, so the easier to clean and maintain the product the better.

I then presented Grant with first stage concept prototypes and sketches. These varied from an ice-cream scoop with a lid to a large plastic bulb!

Plastic bulb

Grant was really excited trying out the giant bulb prototype. It’s crude, it looks rather odd but it enabled him to eat liquids.

Spoon heads

Building on this idea, I developed different spoon heads and used 3D printing to prototype them due to their complex form. Coupling these with solid foam handles allowed Grant to mix and match the heads and bodies until he found some options that worked for him. When he was happy we gave two of the prototypes a better grip and presented them to him for Christmas.

Spoon heads 2

The feedback we got was fantastic. These prototypes have allowed him to eat foods that were previously impossible and also improved his social experience in restaurants. Recognising the spoon’s potential, myself and the team at 4c decided to develop the spoon further to assist anyone who was frustrated eating due to shaky hands.

Spoon

Piece by piece I changed the spoon to make it work for a wider audience. This was done by making it ambidextrous, refining the cavity and tweaking the handle for different hand shapes. The original concept aesthetics were quite angular so this was made much softer with a universal appeal.

 

The form has directed the design throughout the process. It was important for this product to look cool, have people question its purpose and not immediately associate it with a disability. By removing oversized grips and tubular forms I think it’s done just that. The final spoon may at first appear a little over engineered for some potential users. However it is designed so that it suits a wider range of abilities – even people with small tremors should see benefits.

S'up_prototypes

One thing that has proved a bit of a battle was Grant’s goal to eat cornflakes: they stick to anything and were difficult to get out of the cavity! For weeks I spent time in the workshop playing with materials and coatings to try and get a cornflake to slide off a surface – to no avail. Now, after lots of research, the spoons will be manufactured in Tritan, which is a bit like a non-stick pan. This means most food will slip out of the cavity when the spoon is turned upside down.

We are using Kickstarter, a crowdfunding platform, to fundraise for its production. This is new ground for assistive products: if we can get enough people pledging to buy a spoon before 2nd October, the project is funded. If the campaign isn’t successful no one loses any money.

The hard work of designing has been done; now it’s spreading the word far and wide. Please visit the Kickstarter page and share with family and friends – this little product has the potential to make a big impact and transform the experience of eating for many. Not just for those with cerebral palsy but those with Parkinson’s disease, essential tremor and other people with unsteady hands.

splitline

 

SpecialEffect

markweb(1)

Today’s guest post is from Mark Saville of the very wonderful SpecialEffect, a UK based charity which uses video games and technology to enhance the quality of life of people with disabilities. Regular readers will remember SpecialEffect as the charity that benefited from our Flowers For Turing Project, and today I’m really impressed with the thought and dedication that’s gone into this guest post. I suspect we’ll be inviting Mark back for more…

A real honour to benefit from Joe’s Brilliant Flowers for Turing idea last month, and huge and sincere thanks to Joe and everyone who donated.

The money you raised will go directly towards helping people with physical disabilities experience a better quality of life through activities like video games. It’s work that involves a range of approaches, including modifying or creating gaming setups that we can loan and support. As there’s no one-size-fits-all way of doing this, we visit people across the UK to find out exactly what they want to play, what they need to play it, and then put together setups around their individual abilities.

There are a few companies creating controllers for disabled gamers, and we’ve often found that specialist support from our team makes the difference between them being successful or not. We’re also often able to link up such equipment with other hardware and software to get the most out of it.

When we need to mod further we’ve got a couple of members of staff who are handy with a soldering iron. Many of the mods they do are repositioned controller buttons or joysticks, or breakout interfaces for people who can’t hold or use a games controller effectively. And sometimes others step in with a helping hand. Here’s a PlayStation controller with a breakout box that was kindly made for us by the engineering department of a local company.

Screen Shot 2014-07-07 at 18.36.30

 

Getting an effective setup is all about the details really, and it’s amazing what a small modification to a controller can make, though. I posted this story the other day about a mod we did for a guy called James (http://www.specialeffect.org.uk/specialeffect-news/two-small-buttons) that illustrates just this point. Two small remapped buttons in the right place and he’s away.

Below: James and his adapted controller:

Screen Shot 2014-07-07 at 18.36.47

Another example is the Razer Onza game controllers with the dial-in resistance on the analogue switches. For some of the people we see with very sensitive finger movements, having that adjustment available is incredibly useful.

Sometimes technology doesn’t always provide the complete solution though. We visited Martin, a 27 year-old gamer with a spinal injury who can’t move his fingers or thumbs. He uses an Xbox controller with a strategically-placed water bottle in his lap to hold it in place. He has really good arm movement and he’s great with the analog sticks and the face buttons, but when he wanted to aim and shoot he had to brace the controller with one arm and use his other forearm to hit both the left and right triggers. This delay meant that he would often get shot while he was moving his arms.

We positioned switches that act like the trigger buttons to the side of the controller where Martin could rock his hand onto them, and put an extension on the right stick to give him more accurate control over his aim. But the vital stabilizing component in all this was the water bottle, so we kept that. We could have used some expensive mounting equipment to keep the controller in position, but the bottle was doing the job just fine, and Martin was used to it.

Below: Martin:

Screen Shot 2014-07-07 at 18.36.57

 

 

No matter how advanced the tech, success is still dependent on the small print. We’ve begun working with a man with locked-in syndrome who has no movement except an upward movement of his eyes, so last week we were chewing the cud with the guys from g.tec to see if we could use their biosignal system to harness the electrical impulses from the muscles controlling the eyeball. The other alternative we’re looking at is a Kinect running on a PC with the Kinesic mouse software. Both options might provide a way forward, but it’s a case of sitting down and working intensively with the individual to find the best solution.

 

Below: Testing an eye muscle setup with the g.tec biosignal system

Screen Shot 2014-07-07 at 18.37.08

 

 

Our occupational therapists play a massive role in everything. They bring a huge amount to the process, including making sure that the mounting and positioning of the equipment is safe, and often spotting and coaxing extra tiny finger or hand movements – movements which can make the difference between being able to play games or having to sit and watch. They’ve got a whole bunch of wonderful stuff in their boxes – padded garden twine, heat-mouldable resin, different types of Velcro… all useful in some way.

There’s a surprising variety of disabilities to overcome as well. As well as helping people who have accessing issues as a result of conditions including cerebral palsy, stroke, combat injury and muscular dystrophy, we’re constantly learning about the subtle ways that disability keeps people from enjoying video games.

Take Rossanne, for example. She has Fibromyalgia, where the pain is concentrated in her hands and arms. It’s almost like heightened sensitivity in these areas caused by all movement; she especially has problems with repetitive pushing of buttons, and she can feel pain by even the slightest touch.

We visited her and set up a head mouse for navigating the screen, switches on the floor to move her character and for the left mouse click, voice control for keyboard presses and macros, and used her voice recognition software to convert her speech into text, so she can reply to people texting her in-game. It’s given her a setup that lets her play her games without needing to use her hands or arms at all.

 

Below: Rossanne trying out her gaming setup:

Screen Shot 2014-07-07 at 18.37.23

 

 

All in all, it’s pretty intensive and diverse work and the demand for our help is growing all the time. If you’d like to know more about the difference we’re making there’s some case studies and how-to videos on our YouTube channel at https://www.youtube.com/user/GameOnForEVERYONE.

All our help is given without charge, so the donations from the flowers is extremely valuable and very, very welcome. Thank you again!!

 

http://www.specialeffect.org.uk

 

Interview Paul Woodgate from the Wellcome Trust

Paul Woodgate July 2014

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: Liat Ben-Moshe, Disability Incarcerated

Interview time!

 

Screen Shot 2014-07-01 at 20.57.01
Liat (right) with Angela, who wrote the foreword

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).Screen Shot 2014-07-01 at 20.58.31

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.

TooManyCooks At Croydon College

Screen Shot 2014-06-18 at 10.28.56

Hi all, this week I’m writing a book with a wonderful group of kids in Croydon College, and one of the teachers has very kindly agreed to guest blog for us a teachers-eye view of the process. Jim is the man behind @Yayeahyeah and he’s also live-tweeting the whole novel process as @TooManyCooksCC so please find out what’s going on there!

Hi all,

Jim from Croydon College here, guest blogging about our involvement in the TooManyCooks project, which sees 10 of our students team together to write a novel over the course of 5 days.

By day, I’m a maths teacher, but by night/early-morning/lunchtimes/holidays, I’m a voracious reader of books, including a large amount of YA novels. So when my boss Chantal asked me if I’d like to be involved in the Too Many Cooks project, I jumped at the chance! (Apart from anything else, I’m able to spend the day on Twitter giving progress on our updates, and the thought of a job in social media – this definitely counts! – was too good to turn down.)

Up until last Friday, my attention has been devoted to teaching GCSE Mathematics (last exam was Friday morning), so I’ve very much come into this ‘cold’. This has been incredibly interesting because I’ve been having to pick things up in the same way as the students have. They were given a one page brief on Monday, spent the day mind-mapping and planning, and then were so far ahead of schedule that they started actually writing the novel on Monday afternoon rather than Tuesday morning as planned. The planning phase was simultaneously really fascinating and incredibly depressing – I believe we started off with 7 deaths (and we’ve only got 8 characters, I think), an abortion, drug abuse, and various other tragedies. Thankfully, the students have cut back on some of the darker, more depressing parts. (You may not believe this if you read it, but trust me, it’s true!)

It’s been particularly interesting to get to know students I haven’t taught before – the overall enthusiasm level here is fantastic! The project is certainly pushing them out of their comfort zone, with one student, K, being fairly vocal in her belief that this might be ‘cheating’ and that novels are generally written by one person. (Although as Joe’s pointed out, they’re also NOT generally written in 5 days) Despite this, she’s playing a full and active part in the writing, as are all of the rest, most of whom seem a little happier with the concept.

Seeing the students gain in their confidence as they get through the week and write more has been a highlight for me, as has listening to them discuss what will happen in particular scenes. (Each is responsible for a particular character and scenes involving several of them need there to be a consensus between the people responsible – it seems a weird way to write when you hear about it, but it’s working surprisingly well!)

What do you think of the idea of Too Many Cooks? Would you read a novel written by 10 people, or do you agree with K that it’s ‘cheating’? Follow us on Twitter for more live updates!

 

Interview: Anna Angus-Smyth on Assistive Sandpits

Image from: http://commons.wikimedia.org/wiki/File:Sand_sculpture_Burgas11.JPG
Image from: http://commons.wikimedia.org/wiki/File:Sand_sculpture_Burgas11.JPG

 

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.

Fiona Jarvis: Shades of Grey

Fiona Jarvis Headshot

 

Today’s guest post is from Fiona Jarvis,  who  established Blue Badge Style  in 2007.  I’ve been an admirer of BBS’s blog for some time – they do a very good line in showcasing beautiful assistive design, and I encourage everyone to take a look, but it’s definitely not BBS’s main focus. I’ll let Fiona herself take you through that…

 

 

Nothing in life is black or white, everything is full of shades of grey.

I’m not talking about the smutastic bestselling novel with fifty of them, but about the way we look at life. Things are never as clear cut as you may want them to be; things aren’t necessary right or wrong, good or bad. This is true for everyone but it’s pertinent, in more ways than one, for people, such as myself, with mobility impairments. Consider it in the most literal of terms and take a look at the majority of disability equipment: you’ll find grey crutches, grey wheelchairs, grey rollators and more – everything in boring shades of grey.  You might call it NHS grey.

According to the Disabled Living Foundation statistics for 2008, the disability equipment market is worth £1.46Bn and growing at an estimated 9% pa. In my opinion this a market that is being completely under-served and treated as patients rather than the discerning customers that we are. There may be many shades of grey – charcoal, chrome, battleship and apparently forty seven others – but they all look pretty much the same to me. Drab, clinical and unimaginatively designed.

One of the reasons that I set up Blue Badge Style was to bring together likeminded people who don’t want to put up with these dull and unfashionably designed, but essential, items. Things are improving and there are now more stylish mobility aids than there used to be. Take a look at websites like Designed 2 Enable, Glamsticks and The German Crutch Company and you’ll see that there are some fashionable options out there. We highlight these on the Blue Badge Style website to let others discover them, but there’s still a long way to go before a stylish lifestyle is equally accessible for all.

In essence Blue Badge Style is an accessible lifestyle guide for the discerning less able. Our basic ethos is that style and disability are not mutually exclusive and our aim is to ensure that wherever you go or whatever you do it is a positive, cool, fashionable and elegant experience. We track down those stylish mobility aids, we find out about the accessibility and disabled facilities at cool venues and we try to highlight – in a positive way – where the ‘equal provisions of goods and services are unreasonably deficient’.

There are so many people out there who have a disability, visible or otherwise, who want to have better access to style. I know this because I am one of them. I first realised I might have MS over twenty years ago, when I kept falling off my high-heels. People thought I was drunk – and that was the confusing thing, as I could well have been. All these years later, a lot has changed but a lot has stayed the same too. I may use a wheelchair these days but I still want to go out, eat somewhere stylish and get drunk again every now and then (nobody’s perfect). I’m not alone in this, but the problem tends to be finding somewhere accessible to go.

Up to 19% of the UK population is disabled and as we see more shades of grey as the population ages, this number is only going to rise. At the moment, we can’t just book online like everyone else, we have to do a lot of questioning on the telephone. You can end up speaking to four different people and even then you can’t rely on what they say. You just have to take a chance and hope the access is OK. Often friends or family will book on behalf of me, they’ll ask all the right questions and when we get there and find an obstacle they feel terrible. I wanted to find ways to stop this from happening.

It’s all about trying to get information to the people who need it. If you’ll forgive a brief stat attack, in 2013 AccessChamp research, featuring 276 members of Disabled Motoring UK, found that 92.1% of less able visitors seek information about access online, but only 16.8% felt that they can always get enough information. Since the facilities are often already there, the key thing is getting the information out to potential customers. Little things make big differences.

We have created Pictorial Access Descriptions (or PADs) which individual venues can put on their websites as the perfect way to present access information. PADs assess a stylish venue from the point of view of the less-physically-able customer, giving them a high-quality, pictorial journey through a venue, which highlights the disabled facilities in public areas and rooms, as well as any potential obstacles. When it comes to finding out about access a picture’s worth a thousand words – that’s why PADs work better than access statements (which are rarely available anyway) and it’s also why the easiest way to explain them is to see them for yourself. So here’s a picture of how the PAD works.

Screen Shot 2014-03-22 at 15.51.48

Already used at the trendy Hoxton Hotel (check out their full PAD here), the PADs will enable venues to reveal their facilities and access in style, showing that they can offer guests cool comfort, not just access statement compliance. It’s about letting people know what to expect. We less able people can cope with a lot; we just need to know what’s coming.

After all, it comes back to those pesky shades of grey I mentioned at the top. Issues of accessibility aren’t black and white. Something that one person may consider to be, for instance, “a small step at the entrance of the restaurant” may be quite a difficult obstacle for somebody else to navigate. We wanted to get rid of these shades of grey and lay out venues’ accessibility in black and white with the PADs. We’re saying no to NHS grey, no to grey areas in accessing access information and yes to Blue Badge Style at Blue Badge Style.

Claudia Romero: CAPR Style

Claudia Romero and family

 

Today’s guest post is from Claudia Romero, who runs the startup company CAPR Style, which produces specially modified clothing for children with additional needs. She has been kind enough to tell us her story in this guest post.

 

Nobody can predict how life is going to turn out.  You make thousands of plans. Some of them go smoothly, as you’d imagined, but then life throws something unexpected at you.

Nobody wants bad things happen but, when they do, it’s how you respond that matters. Do you sink or swim?

I decided to swim.

As a young woman, I dreamt that my life would unfold in the typical way.  I would become a professional, work for a while then get married and start a family.  After babies, I would return to work until retirement. Well everything was fine until I got married…no one told me that I would leave everything behind – my family and friends – to move to a completely different country and culture. However, I embraced the change, imagining that in a few years I would go back to my country. So I began to live in Scotland and to know this amazing place.  Sure, I hated the weather but the warmth of the people made up for all the cold and the rain.

 

Then the kids started to come, everything was going fine and according to my well- laid plans.  Then, when my third boy arrived the world that we had known suddenly fell apart. It was like a huge earthquake that shattered every aspect of our lives. He has a rare syndrome that makes him 100% dependant on others. Thanks to him I have learnt how to resuscitate someone. Learnt nursing skills and medical terms and how to deal with doctors, nurses, medical professionals and all sorts of people involved in his care. I learnt how to fight to get things that my son deserves.  I learnt how to travel and to keep doing things with a severely disabled person and to let the world know that just because he is disabled doesn’t mean he has to stay at home or be in a hospice.  We as a family fight for his rights.

 

Then he started to grow and dressing and changing him become difficult.  I started to look for special clothing for him and for me as I was struggling with the everyday demands of changing a disabled child. However, I couldn’t find anything appealing so I asked a friend to modify some clothing for him. The feedback that I got from the nurses and school staff was amazing and many of them told me that I should brand it. So here we are and with the support of Entrepreneurial-SPARK this dream is coming true. The idea of solving a very real problem facing parents and carers and changing their kids’ lives gives me a huge sense of joy. We are going to bring style and dignity to all disabled kids in the UK – something that they absolutely deserve.

It has been a great adventure sometimes difficult but as any adventure I have decided to stand up, look forward and go do!