Participants wanted for ‘Hanging in the Balance’ arts-activism

As disabled people, we have a deep sense of threat and despair about our future: a future that ‘hangs in the balance’.

Are you a disabled person who feels like your life is currently hanging in the balance?

 

Draft wet plate version 15.8.15
Draft wet plate ‘Hanging in the Balance’ image        M.Selway 15.8.15.  Follow the project at #hanginginthebalance

To symbolise the regressive affects of welfare reform and fragility of our existence, I am working with historical photographer Michele Selway to produce ‘Hanging in the Balance’.

‘Hanging in the Balance’ is an ethereal set of wet plate photographs of disability related paraphernalia hanging ominously in the trees.

Inspired by Liz Crow’s ‘Figures’ this project will carry on highlighting the deeply troubling effect of austerity through art activism.

Follow Gemma’s board #hanginginthebalance on Pinterest.

 

I would like to accompany these plates with statements from disabled people highlighting how their lives are hanging in the balance.

If you would like to contribute, please email info@gemmanashartist.com with your statement by 1st November 2015, and let me know whether you are happy for your name to be used with your quote.

 

Thank you,

Gemma Nash

#hanginginthebalance

“Austerity exists in other countries, but no other countries to my knowledge has targeted disabled people in the way that the UK government has.” 
– Simon J Duffy, director of The Centre of Welfare Reform.

 

“My life is hanging in the balance because the fragile security I felt I had built up over the years has gone completely …. all the practical arrangements I have been able to rely on are uncertain.” – Liz Crow, Artist

 

Technology: to augment or not to augment … that is the question?

As a digital artist who uses both assistive and mainstream technology, I am disturbed and excited by the idea of augmentations that provide an alternative way of experiencing the world, and for me, assist me to make my work. I currently work in a variety of digital mediums and recently took part in the D2art project for disabled visual artists (funded by the Arts and Humanities Research Council and led by the University of Birmingham – in partnership with DASH).

D2art…

The aim of D2art is to explore the use of technologies to remove barriers experienced by some disabled visual artists.  The project focused on software and computer based graphic design and editing programs, such as Photoshop. I use programs like Photoshop on standard computer equipment with a specialist trackball instead of a mouse for editing. Using my trackball for prolonged periods of time has caused RSI problems, and existing dictate software is impossible to use because of my speech impairment. So I was keen to explore a few possible alternatives to both my trackball and dictate programs.

 

Tobii EyeX
Tobii EyeX

During my session I used Tobii EyeX (left), Enable Viacam, Finger Mouse, Leap Motion, Oculus Rift and Steady Mouse. The most useful software for me was the Tobii EyeX – a fairly reasonably priced eye tracking software. Although I found it was too fast for fine control, I could see the potential use it has for screen jumping and scrolling in conjunction with my existing trackball.

 

Dr Chris Creed, leading the research, explained that other participants had experienced similar problems. He discussed the need to develop a whole new photo editing software that is made specifically for use with assistive technologies, such as eye tracking. Exciting stuff!

When it comes to assistive technology for producing art there are revolutionary ways of making music, including using your brainwaves, in real-time. D2Art did make me wonder whether there will ever be a similar programme for visual artists? Will future disabled artists be able to operate graphic design software, or even a camera, using mind control? lf so, would this type of augmentation end up making disabled artists ‘more enhanced’?

 

Enhanced Artists …

The prospect of technology that enables disabled artists to be more enhanced than their non-disabled counterparts might seem farfetched. But since the 2012 Paralympics this phenomenon has come into mainstream discourse for disabled athletes. Sportsperson’s prosthetic limbs, such as those used by Oscar Pistorius, surpass the capabilities of biological limbs – making these athletes ‘enhanced’ rather than ‘disabled’.

Augmented Eye - Bionic Eyes
Bionic Eye

Bioethicist, Andy Miah, refers to the prospect of these types of enhancements as becoming the optimal for “faster, stronger, further and more accurate performances”. Guardian journalist, Jemima Kiss, recently wrote an article about the climber Hugh Herr and his bionic legs. She explores the idea of bionics becoming so appealing that some people may choose to amputate just so that they can augment their bodies – creating a far more profound human digital divide: the augmented, and the unaugmented.

 

This divide not only questions who exactly is disabled, but also raises questions about our relationship with technology and what it means to be human in the twenty first century. Using my eyes to operate the curser did make me feel like I was almost becoming as one with the computer or more alarmingly functioning ‘under its control’. In this context, are contemporary philosophers such as Braidotti right – is the human an out-dated phenomenon? Critiques of the technological society often seem obsessed by a fear that what is happening is profoundly unnatural, that we are becoming post-human, entering what Professor Sherry Turkle has called “the robotic moment”.  I certainly found eye-gaze software slightly disconcerting in this way, but perhaps this is no different from early anxieties about the telephone. Lets not forget we were once fearful of the telephone’s unnatural ability to separate the voice from the body.

 

Appropriate use of technology…

I really do support initiatives in new technologies, particularly ones that focus on removing disabling barriers and improving quality of life. But I also feel that we sometimes need to question when it is appropriate to use technology. Sometimes I find it helpful to take part in more kinaesthetic ways of learning or creating work even though these methods are physically difficult. Research by Pam Mueller and Daniel Oppenheimer demonstrates that students who write out their notes on paper actually learn more:

hand writingMueller and Oppenheimer had students take notes in a classroom setting and then tested students on their memory … and their ability to synthesize and generalize the information.  Half of the students were instructed to take notes with a laptop, and the other half were instructed to write the notes out by hand…who used laptops took more notes.  In each study, however, those who wrote out their notes by hand had a stronger conceptual understanding and were more successful in applying and integrating the material than those who used laptops.

Certainly the module I did the best at during University was one that happened to be in a classroom with wide enough desk space for me to handwrite notes, where I would normally have taken notes using a laptop. Of course it needs to be recognised that using technologies is crucial to some people who may have little or no alternative.

And if there is one thing I did take with me from three years at university it is this; always finish an essay with the opening ‘title’.

‘To augment or not to augment … that is the question?’

“Will future disabled artists be able to operate graphic design software, or even a camera, using mind control? lf so, would this type of augmentation end up making disabled artists ‘more enhanced’?”

Gemma testing Tobii EyeX

 

“Using my eyes to operate the curser did make me feel like I was almost becoming as one with the computer or more alarmingly functioning ‘under its control’.”

 

Disbanners – creative activism with Full Circle Arts

bannerAs part of Full Circle Arts creative activism season, I attended their Disbanners project, which is happening in collaboration with the People’s History Museum in Manchester, and designer Ed Hall.

Disbanners is a fantastic project working with disabled people across the North West to design large scale banners addressing issues of disability and austerity. The project is a great way to give a voice to those most affected by the cuts to services and benefits that help Disabled and Deaf people to have independence.

As Chris Hammond, Chief executive of Full Circle arts is quoted as saying: “It’s not my impairments that make me vulnerable, it’s this Government

Designer Ed Hall lead the workshop at the People’s History Museum on Thursday. Hall is Britain’s leading designer of marching banners for trade unions and other campaign groups, and is, by his own admission, an odd sort of career into which he stumbled more than 30 years ago (by training, he is an architect). He has worked closely with Turner prize-winning artist Jeremy Deller to create banners for his show ‘Folk Archive’. Thanks to this on-going collaboration Hall ‘s work has been exhibited worldwide, including being shown at the Venice Biennale.

During Thursdays workshop, the group were able to visit the Textile Conservation Room at the People’s History Museum. It was a rare treat to have a closer look behind the scenes and see the expert conservators at work. Their main role is to clean, support and help banners survive through a variety of intricate methods in an environmentally controlled studio.

Since industrialisation, banners have been a popular way of carrying a symbol, logo, slogan or any custom message. The word banner is derived from a Latin name “bandum”, a cloth used to make flags, and they have made a revival in modern times. From the Swing Riots of the 1840s to the Goth movement of the 2000s, banners often carry pictures of hope, love, change and the value of sticking together. It was a pleasure to work with Hall, and learn more about the ancient craft of banner making.

tagsLots of group discussion took place about the regressive effects welfare cuts will have on disabled people, with prominent disabled activists warning of disabled people falling into destitution and being subjected to humiliation.   In an earlier blog, I talk about the benefit system in Britain and the frightening prospect of returning to an era of handouts and poverty: “It wasn’t until the early 1970s that state funding was also given to help disabled people with the extra cost they incurred because of their impairment. These new benefits revolutionised the way disabled people participated and contributed to society”

The final outcome of the Disbanners project will be a large-scale banner designed by the group and put together by Ed Hall. The focus of the banner will definitely be around disabled people coming together and fighting back. This will be a useful resource for disabled activists and lobbying groups such as Disabled People Against the Cuts. As the American actor Morgan Freeman states: “Attacking disabled people is the lowest display of power I can think of.”

As the American actor Morgan Freeman states: “Attacking disabled people is the lowest display of power I can think of.”

 

 

 

From the Swing Riots of the 1840s to the Goth movement of the 2000s, banners often carry pictures of hope, love, change and the value of sticking together. It was a pleasure to work with Hall, and learn more about the ancient craft of banner making.

Beware the Beginning – Interview with disabled artist and anti austerity activist, Liz Crow

Last month I was fortunate enough to interview disabled artist and anti austerity activist, Liz Crow.   I first met Liz twenty years ago through disability activism, and have been following her artistic career spanning the last fifteen years. My own recent work ‘Hanging in the balance’ is somewhat influenced by Liz – bringing the effects of austerity on disabled people visual representation through art.

Background

Specialising in film and live performance art, she is probably best known for her hour on Antony Gormley’s fourth plinth in Trafalgar Square dressed in full Nazi Uniform.   Her hour of brilliance took place at 10pm on a Saturday night, and was something she describes as being ‘one of the most terrifying’ live performance pieces she’s ever done. This controversial performance earned her eighth place in the Guardian newspaper’s top ten plinth contributions in 2009, and accompanied her Resistance project – a powerful film about the Aktion-T4 programme of murder.

Liz Crow

As a disabled artist myself, I was curious to find out more about her journey, and discuss her views on the current austerity situation in the UK.

Liz has been a disabled person since she was ten years old, but it wasn’t until she experienced discrimination at university that she began to question her identity and rights as a disabled person. As a medical student, with an undiagnosed impairment, she faced layers of institutionalised discrimination and was eventually forced to leave. This situation led her to attend a disability equality session run by two disabled women where she discovered the social model of disability. Liz states “in about 20 seconds flat everything changed for me, absolutely the course of my life changed that rapidly because I could suddenly make sense of the last ten years”.

Following this moment of political epiphany, she got involved in disability equality training, and joined a variety of disability rights networks, including London Disability Arts Forum.

Liz describes herself as being quite artistic as a child, interested in drama and performance. However, she says, “that kind of got knocked out of me in teenage years, probably quite a lot to do with impairment and discrimination”. In the late 1990’s, her passion for arts resurfaced after she read a book about female anti militarists. One of the women featured in the book was Helen Keller, and Liz couldn’t quite believe that this was the same Helen Keller she had learnt about at school.   The Keller she had learnt about, and subsequently loathed, was famous for being a tragic but brave figurehead.   But it was clear from this book that Keller wasn’t just this all American icon, but a radical socialist who was way ahead of her time, tracked by the FBI and supporter of women’s rights.   Liz knew she wanted to get that story out to people, so she approached a film maker; Anne Pugh, and together they made a film about the real Helen Keller.

From making ‘The Real Helen Keller’ Liz has gone from strength to strength, producing hard hitting and thought provoking work about a range of difficult subjects. Much of her latest work has been in response to the austerity narrative and the scapegoating of disabled people.

“I think one of the effects of austerity is a kind of unleashing of petty cruelty, though I am not sure it is even petty.”

“I wanted a really strong distribution across the different experiences of austerity. I wanted it to be a range of things; from zero hour contracts to NHS rationing, you name it. “

Recent Work

Her most recent work Figures was a mass-sculptural performance creating a visual representation of the human cost of austerity. For Liz ‘Figures’ was a particularly challenging, as well as interesting, piece because it involved working with natural elements and lots of physical labour.   A lot of the time she worked on her own and was quite isolated, invoking austerity symbolism, however Liz also worked with a team of people to help her get on and off the foreshore: “I really liked working with natural elements and natural materials. There are all sorts of creation mythology, globally, about human beings coming out of the mud and returning to the mud. I like the idea of the isolation, the idea of working with the tides and natural features, the contrast with that and the social structures that are doing so much damage.”

figures

During this process, the team needed to work in absolute harmony, which in many ways depicted the values the project was trying to put forward. She suggests this is something that society should be moving towards; cooperation, and interdependence, all those sorts of values that we need if we are to move beyond the austerity and the damage that austerity does.

Alongside the sculptures are a collection of online narratives of those adversely affected by austerity.   These narratives tell a chilling story from different viewpoints: “I wanted a really strong distribution across the different experiences of austerity. I wanted it to be a range of things; from zero hour contracts to NHS rationing, you name it”

At the most extreme there are people who have died, for example David Clapson in Oxford, who starved to death due to benefit cuts. However, for the most part these narratives show the emotionally draining fear about insecure futures.

One narrative that really stayed with Liz was about a man who was required by the Job Centre to go on a training course despite his son being in surgery on the same day.   Liz recalls him saying the course trainer said she couldn’t understand why he was really resistant to switching off his mobile phone.   Fortunately she asked him why and he told her his child was in hospital having surgery that day, about to go under anesthetic, and the Job Centre had told him if he didn’t attend the training he would be sanctioned. Although in this instance the trainer took pity on this man and made sure he got to the hospital, the situation represents an alarming shift in the type of inhumane behaviour that is now considered acceptable.

 

“I really liked working with natural elements and natural materials. There are all sorts of creation mythology, globally, about human beings coming out of the mud and returning to the mud. I like the idea of the isolation, the idea of working with the tides and natural features, the contrast with that and the social structures that are doing so much damage.”

 

“If you look back at history in Nazi Germany, it started at stage 1 and worked it’s way through to the absolute extreme. So when people are dismissive of somebody drawing those parallels… it is foolish to be so complacent.”

Beware the Beginning

Liz and I discussed whether she felt there were links between current austerity measures and the experience of disabled people during Nazi Germany.   She said that although there was a danger in making absolute comparisons, if you look at the values that permitted the beginning of those events – they are very similar. Quoting an expression, ‘Beware the Beginning’, and highlighting plenty of evidence about the 8 point scale of genocide she suggests the pattern is there. The 8 point scale starts off with the kind of insults that you might get in in the street (we have seen those escalate in the last few years) and then it builds up from there. It builds up through physical violence, it becomes increasingly institutionalised and early on ‘jokes’ made about certain groups. Liz argues that “if you look back at history in Nazi Germany, it started at stage 1 and worked it’s way through to the absolute extreme. So when people are dismissive of somebody drawing those parallels… it is foolish to be so complacent”. Continuing the link Liz suggests: “I think one of the effects of austerity is a kind of unleashing of petty cruelty, though I am not sure it is even petty.”

One of the most profound moments of the ‘Resistance’ project was visiting the cremation ovens of the death centres. There were portrait photos of all the people who had been killed there.   Liz says, “You look at them and they are all of us. All ages, different ethnicities, different classes, women and men. They are all there, and if you are there with other disabled people you see them in these portraits. The mannerisms, or facial expressions or characteristics of a person. For me it felt very profound that I was able to connect it to now. Looking around the group I was able to think ‘wow how many of us would have been here”.

Indeed, how many of us would have been there – Beware the Beginning.  Liz’s work continues to be at the forefront of disability arts in the UK, and with austerity becoming increasingly severe, her work serves a greater and more meaningful purpose, viewed by many of us as a necessary visual representation.

“There were portrait photos of all the people who had been killed there. You look at them and they are all of us. All ages, different ethnicities, different classes, women and men. They are all there, and if you are there with other disabled people you see them in these portraits. The mannerisms, or facial expressions or characteristics of a person.”


A Womb With A View – documentary sound installation

In response to recent cases of growth attenuation and forced sterilisation of disabled people, I composed a unique documentary sound installation – ‘A Womb With A View’.  My installation is a journey into the complexities of ‘womanhood’ and our reproductive rights.

The documentary is both funny, hopeful and at times heart wrenching.  In 2016 I worked in collaboration with visual and textile artist Jennifer Bryant, to present the piece in a physical form.  Their installation piece was showcased at the Shoddy exhibition in Leeds, Spring 2016.

Quotes from ‘A Womb With A View‘:

“Fundamentally it means that I am female, it has dictated the shape of my body and the sound of my voice…. my hormones, so my emotions.”

“It’s holding a little baby.”

“I didn’t start my periods till i was 17 and what it did was heralded the beginning of puberty, and for me that meant I got a lot stronger.”

“Women with epilepsy were routinely sterilised  in this country until quite recently.”

“My sex education came from behind bomb shelters and walls and things.”

“It’s the one thing you can’t give a man who wants to become a woman, the essence of being a woman is having a womb.”

“One of society’s concepts is that to be a real woman you need to have a womb amongst other things like breasts,  and dress a certain way and behave a certain way,  but a womb is an important part of womanhood for a lot of people.”

“Womanhood is about the inner self and not the superficial exterior.”

“Protecting her from pain or distress by cutting into her body and slicing through skin and muscle and membrane and taking organs out, seems a really brutal overreaction.”

“Part of the notion that you should sterilise somebody with an intellectual impairment comes from a deeply discriminatory position tied to a kind of sense of gothic horror that some people might be sexual.”

“I certainly don’t think that people who don’t have wombs, I don’t think they’re not women because they don’t have that, I don’t think you need breasts to be a woman, I fundamentally don’t believe in that tie.”

Weighing up the undeserving cripple

A few weeks ago, recovering from a sickness bug, I lay on the sofa and dozed in front of the TV all afternoon. Feeling moderately guilty, and somewhat ironically, I woke up to Loose Women discussing the The Sun newspaper headline ‘Tum and Dumb’ about lazy obese people watching TV all day whilst living on benefits. I’m sure that there were more worthy items that both The Sun and Loose Women could be discussing, in fact this was the same day as the Boko Haram atrocities in Nigeria, and record sales of the Charlie Hebdo newspaper.

fat1It would appear that “Fat and on benefits” is a currently popular cry from social commenters, mainly those calling for reforms regarding the benefits system. And now David Cameron is jumping on the “fat shaming” bandwagon by suggesting that we remove benefits to obese people who refuse ‘treatment’.  Interestingly, he’s not said what treatment he is referring to, and how compatible that is with our fundamental freedom to refuse treatment.

Social commentators have also been inferring that all overweight people will now be entitled to disability related benefits. This simply isn’t the case. Obesity may now be considered a ‘disability’ under employment law, but that doesn’t mean all obese people will qualify for disability related benefits.   These benefits are based on a person’s ability to complete normal day-to-day activities because of an underlying medical condition. In this particular example from The Sun, the mother has diabetes and angina – both of these health conditions can impair ones ability to complete normal day-to-day activities. Her health problems have been attributed to weight problems, but both angina and diabetes can also be caused by other complications, although whether they are in this case is unknown.

The overall tone of the article in The Sun blames the two women for their own predicament and questions whether they should be receiving benefits (described as ‘Hand outs’) at all – they are ‘undeserving’ because they have ‘self inflicted’ medical conditions.

This attitude is problematic because it supports the idea that society should deny benefits to people with impairments that are perceived to be self-inflicted, however such a suggestion would not be particularly fair or easy to establish. By this logic, we would end up denying benefits to physically impaired people who had acquired a head injury during a drunken night of stupidity, or people with significant bone disease caused in part by a history of anorexia. Both seem unnecessarily harsh and ridiculously stringent. Interestingly, my Google search for “anorexic /thin/underweight people on benefits” didn’t prove as fruitful as my search for “fat/overweight/ people on benefits” – both are weight related conditions that can cause both permanent or semi permanent impairment and sometimes a reliance on benefits.

Screen Shot 2015-02-24 at 11.41.38

Articles that portray fat people as self-inflicted lazy scroungers ignore the intricacies of an endemic modern day health problem. Victimizing disabled people who are obese, or obese people who become disabled through their weight gain, is not a solution.

So what is the solution? Statistically 80% to 95% of people who voluntarily undergo weight loss programs return to their original weight after a few months. So, it is highly unlikely that we can prevent obesity by imposing benefit sanctions that enforce treatment, even if they were legal! Such proposed punitive measures would be far more likely to exacerbate the mental health problems that cause many people to overeat in the first place. As Johann Hari suggests in his article about addiction, causing addicts more stress increases addiction, whereas a less stressful environment decreases addiction.  I don’t think it’s a coincidence that the mother featured in The Sun newspaper had experienced a series of stressful events in her life – divorce, the loss of a long-term job and relentless verbal abuse because of her weight.

Many scientists believe the problem of obesity requires collective action on a global scale, and that “the size of the impact of unhealthy food on consumer health is comparable to the impact of cigarettes.” If we as a ‘big society’ are really concerned with the health of our nation, we need to adopt a more holistic approach to encouraging weight loss and the promotion of healthier lifestyles. For example, tackling the corporate interests of businesses who promote cheap highly addictive, fatty and sugary foods.

One thing is for certain; harassing and finger pointing at individuals will not resolve this issue.

 

The Woodlawners Exhibition

« 1 of 18 »

 

Last Friday fellow artist, Michele Selway and myself launched ‘The Woodlawners’, a photographic exhibition and oral history of the lives and living arrangements of the residents of Woodlawn Court, Manchester.Built in the 1930’s, Woodlawn Court comprises of 78 flats and is situated in the leafy suburban area of Whalley Range. A few of the older residents have lived there since it was first built, and still refer to the housing development as Whalley House – home of local entrepreneur Samuel Brooks. Whalley House was demolished to make way for the flats, but within the spacious grounds you can still find a few traces of the original structure.Produced in August 2012, inspiration for the project came from Daniel Meadow’s and Martin Parr’s exhibition ‘June Street’. Originally the work was presented on a cloud based virtual canvas, with an aim to create a similar digital story with a more contemporary feel. Because we wanted to provide the audience with an insight into the history of the area and relationships between neighbours, we recorded residents speaking about their experience of living in the area, and how it has changed. Both the photographs and oral archive touch on issues of diversity, isolation and community spirit.

 

 

 

The photographic exhibition will be up until Sunday 22nd November at BBQ Arts, 486 Wilbraham Road, Chorlton, Manchester.

Thanks to Drake Music, Furtherfield and Stockport University for the initial funding and technical support.

I have cerebral palsy and I support Jack Monroe

Last week food writer Jack Monroe was heavily criticised in social media for her tweet about David Cameron: “:Because he uses stories about his dead son as misty-eyed rhetoric to legitimise selling our NHS to his friends: #CameronMustGo”

Perhaps Twitter may have not been the best platform for Monroe to raise this subject – but she is not alone in questioning his behaviour. Both disabled people, and parents of disabled children, have been complaining about this issue for a number of years. Some disabled activists have been so incensed that they’ve posted several online satirical virals about it. One viral showed a picture of David Cameron sitting on the settee with his son lying beside him with the caption “Yes, I did claim disability living allowance for my son. But I’m stopping it for everyone else, now I have no use for it”. Personally I found this particular viral below the line of acceptable political satire, but it does demonstrate the level of anger people feel about this issue.

The criticisms levied against Monroe’s somewhat milder comment were harsh, perhaps because she is such a prominent figure who doesn’t have a disability, or perhaps for other reasons. Sarah Vine, for example, wrote a homophobic and unsubstantiated article questioning Monroe’s mothering abilities because she is a lesbian. Monroe has also received some vile hate tweets wishing ill of her own son, all because she has voiced an opinion.

David Cameron with his son Ivan at their country home, Britain  - 16 May 2004

But was she wrong to have tweeted what she did? Like many of my disabled friends I truly sympathise with Mr Cameron’s loss of a child, and as a parent I can’t imagine anything worse. Many of us within the disabled community have lost lifelong friends, children or partners to impairments such as cerebral palsy. And I have no problem with Mr Cameron talking about his son when it is salient to political debates or general discussions. Politicians do occasionally draw on their own personal experiences to highlight a particular point or to show empathy. Recently, former minister Norman Tebbit spoke about caring for his disabled wife during a debate about the Assisted Suicide Bill. The trouble is that Mr Cameron often brings up his son at times when it is not relevant, or even worse, to avoid awkward questions about the damaging effects his draconian welfare reforms will have on poor people. And for me this is not okay.

There is a fine line between personal comments that are relevant in the political sphere, and ones that are there to create a political shield nobody dares to break. I appreciate that the Camerons understand the universal struggles of parenting a significantly disabled child, but they are wealthy and very removed from the average parent or family caring for such a child. They have never been a family dependent upon DLA (Disability Living Allowance) to ensure their child’s extra needs are being met. They didn’t have to cope with reductions in specialist care for their child because of local budget cuts. They haven’t required additional housing benefit to pay for an “extra” room to store essential medical equipment. And while they may have experienced filling in a DLA form, I doubt they have seriously worried about the loss of independence their child might suffer if that claim was rejected. Therefore, why does Cameron continue to bring up his son when these issues are being discussed?

Imagine if Nicky Morgan kept making immaterial remarks about her son’s educational development during debates about the national curriculum. People would quite rightly question her integrity and abilities as a politician – so why then is it okay for Mr Cameron to talk irrelevantly about his son whenever there is a debate about disability benefits or the NHS? I find the repeated use of his son’s deeply sad premature death unacceptable. Many politicians have lost children, partners and loved ones, however they do not drag it up to escape challenging questions or prove their leadership credentials. And as someone with cerebral palsy I feel particularly uncomfortable with this “misty-eyed rhetoric” because it comes across as if he is using his son as a ‘political ragdoll’. And I don’t like that.

So before condemning Monroe for being a loony, lefty, callous bitch, perhaps those who have publicly attacked her opinion should reconsider – disabled people, including many of us with the same impairments as Mr Cameron’s son, also find his constant referrals to his child distasteful.

I have cerebral palsy and I support Jack Monroe.

#CameronMustGo #IsupportJackMonroe

 

There is a fine line between personal comments that are relevant in the political sphere, and ones that are there to create a political shield nobody dares to break. I appreciate that the Camerons understand the universal struggles of parenting a significantly disabled child, but they are wealthy and very removed from the average parent or family caring for such a child.

 

 

141124jackmonroetweet1

 

 

.

Augmented Me – Technology for Generation Z

Daisywheel Brother TypewriterThroughout my life I have used a range of assistive and/or mainstream technology to break down the disabling barriers I experience. My initial introduction to assistive technology was the daisywheel electronic typewriter. Heavy and cumbersome by today’s standards, in the 1980s this machine transformed the way that I was able to keep up with my non-disabled peers at school. A LED display allowed me to edit two lines of text on the fly without the mess of correction fluid.

Modern day digital technology has continued to support my ability to study, work and, most importantly, to be creative. The deejay software I used in my twenties, for instance, turned my laptop into a set of virtual decks, enabling me to deejay with precision and ease.

 

I like to think that I was Computer deejaying long before the likes of Professor Jam or Daft Punk, but that might be a slight exaggeration!   First developed in the late 1990s, this software has evolved over time and with today’s Ipad version it has even greater scope for breaking down a range of disabling barriers.

Technology has moved on in unimaginable ways since either my school days or deejaying twenties, and last month I attended a conference showcasing some mind blowing new and developing assistive technologies. The IIC (Independence, Inclusion, Choice) show was a large-scale celebratory event with various seminars, displays and interactive zones including a Multi Sensory and Learning Zone, Adaptive Sports Zone, Super Sized Mobility Car Showroom and Family Fun inclusive Activity Space.

Whilst there I attended a brilliant seminar run by Abilitynet, who have been providing disabled people with IT support for over 30 years -Stephen Hawkins was one of their earliest customers in the 1980s.

 

assistiveRobin Christopherson, Head of Digital Inclusion at AbilityNet, took us on an intriguing tour of robotic limbs, driverless cars and brain-controlled computers. I found the technology he demonstrated both illuminating and sinister in equal measures.

One of the latest devices he talked about was Google Glass – a wearable computer with an optical head-mounted display. Recent apps, developed for Google Glass, have the capability of reading human emotions, recognising faces and whether that face has a criminal record.

For people with limited dexterity, Google Glass does provide a good alternative to physically holding a smartphone.   It may also be useful for people who have difficulty recognising facial expressions or remembering names. However, I’m not convinced it would help people who are vulnerable by providing information about whether someone has a criminal record. I find the thought of having access to this information quite unnerving.

Whilst some people may feel that this technology would make us safer, I think it would lead to vigilantism and extreme paranoia. Arguably it may also dull people’s natural capabilities to accurately discriminate and use their own instincts. And what happens to people with a conviction that is wrong? Unsurprisingly, there has been a backlash against Google Glass and the unstoppable pace of augmentative technology.

Another amazing but controversial development Christopherson talked about was ‘personal assistance robots’ and medical robotics. Undoubtedly it was quite extraordinary to see a paralyzed woman feeding herself by controlling a robotic arm using just her mind. This robotic arm is still currently lab-based because it is so bulky – but the long-term goal is to make the technology smaller and wireless, so that it can be used at home.

Just as astonishing is the progress of the humanoid robot that now has enough AI (artificial intelligence) to respond to emotions, make basic conversation and carry out simple tasks.

Really incredible cutting edge life changing technology – so what is the ethical dilemma?

It is true that these robotic devices would improve the dignity of disabled or elderly people to perform basic everyday tasks (e.g., cooking, eating or self-cleaning tasks) without having to rely on human assistance. Robotic assistants would also be much easier to manage – with just a turn off / turn on button! Some time ago, actor Liz Carr wrote a great blog illustrating the complexities of employing human PAs (personal assistants). Like Liz, I have employed human PAs for a number of years and in many ways the thought of a robotic version does have some appeal – particularly as my Google calendar has just reminded me that I need to arrange PA holiday cover for next week!

However, robotic assistants would inevitably reduce good old-fashioned human contact, which is particularly important for people who are isolated. Numerous studies have demonstrated the importance of human interactions on our health and well-being. Humans are inherently social creatures and need each other – I’m not convinced that AI will ever fulfil that need. Moreover, will we be able to control AI once it achieves human-level intelligence?

Somewhat less space age, but just as interesting was the seminar about Clicker 6 speech supported literacy software.  Designed by Crick, Clicker helps learners find and correct errors, follow the text and review what they have written. It has automatic speech feedback, intelligent word prediction (which can suggests words that fit the context of the pupil’s writing), and over 2500 curriculum pictures. Clicker 6 can be used with switch technology and runs on a PC and Ipad. It also works with a webcam, onscreen keyboard and can act as a communication tool for people without speech.

As well as school children Clicker 6 also could be helpful for University students, particularly those who have dyslexia. Clicker has the potential to create sophisticated wordbanks using text from most web pages, or online documents – this kind of resource could be invaluable for essay writing (hopefully without upsetting Turnitin!) A far cry from my electronic typewriter.

What struck me about many of the exhibits was that the marvellous new technologies showcased often come with a super-duper price tag. I couldn’t help cynically thinking that only the few will benefit from the life changing products on offer – most disabled people these days can barely afford the basics, and funding for such items is getting ever harder to secure.

 

Google Glass is a wearable computer with an optical head-mounted display. Recent apps, developed for Google Glass, have the capability of reading human emotions, recognising faces and whether that face has a criminal record.

 

 

 

 

 

robot personal assistant CM

Robotic assistants would inevitably reduce good old-fashioned human contact, which is particularly important for people who are isolated. Numerous studies have demonstrated the importance of human interactions on our health and well-being. Humans are inherently social creatures and need each other – I’m not convinced that AI will ever fulfil that need.

 

 

 

Help for the handicapped – turning back the equality clock

please help spastics

The handicapped; the deaf and dumb; the feeble minded; the blind; the imbecile and the cretin – these are all terms used to describe disabled people during the Victorian era in which many were usually reliant upon charity, and often hidden away in institutions.   Recently journalists have warned that the increase in food banks marks a “return of a problem some might have thought we banished after the Depression, if not the Victorian age”.   Guardian journalist, Jonathan Freedland writes “This was why Britons sought to put the Victorian era of charity behind us, why we decided that sometimes a state service is better: because there is less shame in claiming a nationally mandated benefit than in going to a church hall, being handed a food parcel and having to nod your head and say thank you.”

The prospect of welfare provision being based upon the Victorian era of ‘charity’ is a gruesome thought for disabled people. But we wouldn’t actually have to ‘time travel’ that far back to experience a considerable reduction in our quality of life. The recent WOW (War on Welfare) campaign, championed by disabled actress and comedienne Francesca Martinez, also raises concerns around the regressive effects welfare cuts will have on disabled people. Martinez warns of disabled people falling into destitution and being subjected to humiliation.  With 105,000 signatures, the WOW petition has successfully pressurised parliament into agreeing to an independent cumulative assessment of the impact of changes in the welfare system on sick and disabled people, their families and carers. I mentioned some of these cuts in an earlier blog.

Quite rightly there has been a lot of focus on the cuts to income replacement benefits for those who either cannot find work or are too sick to work. But it’s worth remembering that it wasn’t until the early 1970s that state funding was also given to help disabled people with the extra cost they incurred because of their impairment. These new benefits didn’t hold the same stigma as the income replacement benefits and as such revolutionised the way disabled people participated and contributed to society – Mobility Allowance assisted with the costs in getting around; and Attendance Allowance helped to pay for the additional costs related to living in a disabling society. They were often used to pay for life changing specialist equipment, such as “invalid carriages”, now mobility scooters. Twenty years after their introduction these two benefits merged to form DLA (Disability Living Allowance). DLA, like its two predecessors, is based on perceived need and is not, and never has been, an ‘out of work’ benefit.

invacarSimultaneously, the 1970s also brought about greater provision of community care and rights for disabled people through the 1970 Chronically Sick & Disabled Persons Act – a ground-breaking piece of legislation described at the time as ‘a Magna Carta for the disabled’. Local authorities were responsible for providing welfare services and practical support for people in their own homes. A code of practice was introduced to increase the general accessibility of public buildings, requiring local authorities to provide parking and accessible toilets for disabled people.   Disabled badges for cars were introduced with exemptions for parking and other access. Provision was also made for “invalid carriages” to be used on public roads, footpaths and pavements. The 1970 Act also encouraged the representation of people with knowledge and experience of disability on local authority committees and other public bodies.

In the years since, further rights based legislation has extended the provisions of the 1970 Act. These include: The Mental Health Act (1983), The Disabled Persons Act (1986), Disability Discrimination Act (1995), The Community Care Direct Payments Act (1996) and The Equality Act (2010).

Last year the current Government attempted to remove the legal duties established by the aforementioned Acts – including the Chronically Sick and Disabled Persons Act – describing a council’s duty to care for disabled people as a ‘burden’. Although this was unsuccessful (for now), local authorities are still struggling to meet these legal duties because they are facing the biggest cuts in living memory.   These cuts are particularly alarming following the Government’s decision to close the Independent Living Fund – a national pot of money ring-fenced to provide care for the most severely disabled people. The government are also replacing Disability Living Allowance with a new benefit – PIP (Personal Independence Payment). Whereas the move from the 1970s Attendance and Mobility Allowances to DLA widened the scope of people eligible for the benefit, PIP will drastically reduce the range.

Meaning these crucial pillars underpinning our ability to be independent are under serious threat. Lyn Levett’s story below explains what life was like for disabled people before these pillars were put in place.

The government have repeatedly claimed that because disabled people now face fewer disabling barriers, they need less support. Whilst it may be true that access to public services has improved, the fact remains that many of us still cannot access these services without additional support. The DLA mobility component, for example, has never been a financial substitution for ramps or lifts to public transport services. This component has been awarded for a range of impairment related needs, most notably one’s ability to get to these services in the first place. The new, rather ridiculous, criteria for being awarded the equivalent PIP could potentially result in the repossession of an estimated 90,000 motability cars and scooters. This is a far cry from the allowances introduced in 1970s, which enabled people to buy “invalid carriages” to gain access to their local community.

The government have also made similar unfounded statements to justify other welfare reforms that reduce support for disabled people – and of course other marginalised groups in society. I really do hope the WOW campaign is successful because the thought of turning the disability equality clock back 40 years is a frightening enough prospect, let alone back to the Victorian era.

 


 lynnLyn Levett’s Story

Lyn was born in 1960 and has a significant physical impairment (cerebral palsy). She is a musician, music producer and regularly performs with the world renowned British Paraorchestra. Launched in 2011 the British Paraorchestra played alongside Coldplay at the 2012 Paralympic ceremony. They have also performed the National Anthem at Buckingham Palace. As a solo artist, Lyn has recently been commissioned to produce a score for a documentary about the Spanish paracyclists. Paraorchastra Conductor, Charles Hazlewood describes her compositions as the “most dizzyingly brilliant electronic music”.

 

Lyn is a credit to our nation – but her achievements wouldn’t have been possible without the community care support she received later on in her life.  Despite her music talent and intellect, Lyn left school without any qualifications and had little hope of an independent life.    She attended a special needs boarding school during her formative years, and subsequently ‘lived’ in a number of different residential homes as a young adult.   The homes, run by the charity Scope, were very structured – The smaller sheltered accommodation training places, also run by Scope, were not much of an improvement.   In one training place, Lyn recalls that the managers were using the paid staff to do their own domestic jobs instead of providing residents with care.

 

During the early 1990s Lyn managed to escape from these institutions and moved into her own home. This was made possible with the help of improvements in community care – improvements the current government want to reverse. It was during this period that she had the opportunity to explore and develop her musical talents. Lyn is terrified the welfare reforms are going to push disabled people back to a time where they were shut away in institutions with very little choice and control. And she knows only too well what that is like.

 

“It wasn’t until the early 1970s that state funding was also given to help disabled people with the extra cost they incurred because of their impairment. These new benefits revolutionised the way disabled people participated and contributed to society”

 

 

 

 

“Before the 1990s people like me had no choice about who provided us with personal care, when we got up or when we ate. There was even a ‘bath list’. We were conditioned not to think for ourselves and when we did we were often penalised for making suggestions”    Lyn Levett, Musician – British Paraorchestra