UKDHM 2015: In discussion with Disability rights pioneer Lorraine Gradwell, MBE

UKDHM
As today marks the start of UKDHM (UK Disability History Month from 22 November to 22 December), I sum up and reflect on my interview with Lorraine Gradwell, MBE.

Known to many as a leading disability rights ‘veteran campaigner’, she has worked within the disabled people’s movement for over 35 years.

BackgrounD

Lorraine, now in her 60s, came to disability politics through her involvement in paraplegic sports – particularly the Manchester Disabled Athletes club in the 1980s.

It was here that she met the highly influential disabled activist, Neville Strowger. She and Neville became close friends and, with others, worked together to set up GMCDP (Greater Manchester Coalition of Disabled People) – one of the first organisations of disabled people in the UK. In its heyday,

GMCDP was instrumental in creating positive change for disabled people both in Manchester and throughout the UK. Lorraine was their Deputy chair, then Chair, then development worker and eventually their first team leader in 1987. She was later CEO of Breakthrough UK (1997 – 2013). Though now semi-retired Lorraine is a Member of the co-production group at Coalition for Collaborative Care.

Trailblazers and Cabbies

In her role as GMCDP’s team leader, Lorraine campaigned around a number of issues – the Disability Discrimination Act, the role of big charities, independent living and accessible transport. She also helped to set up the Equalities Unit in Manchester City Council.

Lorraine and her team’s lobbying made Manchester the first city with Black Cabs that were accessible to disabled people. Campaingers persuaded Manchester City Council that one hundred new licenses were to be issued to Black Cab licenses on the condition that the cabs were made accessible.

Access statement for black cabs

“We used to get cab drivers coming in and talking to us about the campaign .   Some drivers got the new license but didn’t make their cab accessible which ended up going to the court of appeal in London – to uphold Manchester’s stipulation”

independent living

She also worked with Greater Manchester Housing Disability Group and the academic June Maeltzer, to set up the first informal independent living scheme. 

June worked with the Irwell Family Housing Association to get an agreement that the funding for ‘local authority carers’ would go into a trust that was managed jointly between her and the Irwell HA.  At that time, it wasn’t legal for a local authority to give funding directly to an individual, whether they were disabled or not. June was one of the first users of direct payments – before the legislation was even in place.

With pioneers like Lorraine, Neville and June, Manchester was building a strong reputation as good place to live if you were a young disabled activist.

Baroness Jane Campbell (left) Lorraine Gradwell, MBE (right)

“The slogan ‘nothing about us without us’ was never as well established as was in Manchester where Lorraine’s insight and campaigning methodology was embraced wholeheartedly.” – Baroness Jane Campbell

The current climate

Lorraine and I discussed the contrast between the ‘rights based’ campaigning of last twenty years, and the current ‘benefits based’ campaigning.

Lorraine can see why campaigns around benefits and austerity are needed, but feels they need to focus more on societal structures, rather than disabled peoples perceived vulnerabilities.

She doesn’t think that it’s helpful for a movement to be making their ‘vulnerability’ a central plank of their campaign – it’s better to talk about our fundamental rights and the need for those to be addressed.

For me this has a particular resonance as my current photography project, Hanging in the Balance, is about being made vulnerable due to the current austerity measures. – in this context is it OK to embrace and focus on our vulnerability?

Like me, she welcomes the push that DPAC (Disabled People Against the Cuts) have made towards getting a UN investigation into the governments sanctions. She says, “All the rights based issues have gone on the back burner a bit … six, seven years ago it was very much about rights …it was about inclusion, barrier free work, independent living, etc. All that has gone by the wayside in just a short period of time, and it alarms me how quickly it can get unrolled.”

In the area of employment, for example, she says the perceptions around disabled people have taken a massive turn for the worst. During her role as Chief Executive of Breakthrough she sat on the Disability Employment Advisory Committee – a government body that focused on matters to do with disability and employment.

The ConDem Coalition immediately disbanded those types of committees, with no real replacement.  This represented a change in ideology, and the shrinking of the public sector – which has had a massive knock on effect on disabled peoples’ organisations.

DISABILITY AND WORK

Lorraine points out that Breakthrough’s ethos was very much around providing the support to disabled people who could work, not about forcing ill people into work.

The current government doesn’t seem to understand the relationship between being disabled and work. She feels that the way disabled people get portrayed as being either a burden or a scrounger is nothing more than a big scapegoating exercise.

This, she feels, is very dangerous particularly alongside the whole push towards assisted suicide and the creeping privatization of the NHS.   Assisted suicide fundamentally changes the relationship between doctor and patient overturning two thousand years of the Hippocratic Oath – do no harm.

She recalls reading about a woman in Oregon being refused cancer treatment by her insurance company because it was expensive, but they said she could have assisted suicide because that was cheaper. A health service driven by financial decisions and what would be cheaper is not about helping people at all.

“It’s not being sensationalist to describe it as state sanctioned killing, and once you’ve got state sanctioned killing, where’s it going to go? In Belgium assisted suicide applies to children. There’s no stopping it once it’s on the statute books.”

KEEPING DISABILITY RIGHTS ON THE AGENDA

From NHS provided health to access to work schemes, disabled people are once again fighting at the front line. Though the recent cuts may have had a direct impact on the capacity of both Breakthrough UK and GMCDP, they both continue to campaign, and provide much needed support for disabled people.

I am aware of criticisms levelled at veteran campaigners from younger disability rights activists, but perhaps rather than blaming them for perceived failings within their campaigns, we should champion them for their drive and continued commitment to ongoing change and to keeping discussions about disability rights on the political agenda.DPAC

Lorraine Gradwell’s book of collected works ‘A Life Raft in a Stormy Sea’ is available to purchase online.


Original post written in 2015.

Sadly, Lorraine Gradwell died on the 3rd September 2017.

On Saturday 3rd March 2018, Jackie Driver, Chief Executive of Breakthrough UK, and Jenny Gradwell, Daughter of the late Lorraine Gradwell, launched the Trust Lorraine Foundation. The Foundation is a joint project between the Greater Manchester Coalition of Disabled People (GMCDP) and Breakthrough UK to increase local disabled people’s representation in elected office.

 

Who needs welfare cheques when you have Tory kisses? mwah mwah

Disabled People with protest bannerLast month I took part in a series of protests against the harshness of current austerity measures, including the largest march I’ve ever known to take place in Manchester. Organised by the People’s Assembly, there were representatives from; TUC, PCS, CND, Junior doctors, Bread and Roses Choir, Green Party, National Assembly of Women, Stop the War Coalition, Unison, NUT, GMB, RMT and FBU.

I bumped into numerous people I knew during the protests – including previous social worker(s), my daughter’s schoolteacher, friends who are lecturers, nurses and so forth. All a far cry from Boris Johnson’s, ‘mob of assorted crusties with nose-rings’.

The volume and diversity of people attending was staggering – many times during the march I felt emotionally overwhelmed by the breadth of those affected by current austerity measures.

Predictably the press coverage of the protest focused on the behaviour of a minority of aforementioned ‘nose-ringed crusties’. And whilst this kind of sensationalist reporting is commonplace, it’s interesting that the hateful taunts of a few Conservative party members were not considered so newsworthy. Perhaps because they were delivered in a more controlled way than the cliché egg throwers, or perhaps for other reasons.

The majority of protesters were very well behaved. And whilst I’m not justifying physical threats or the use of foul language from the minority, I find it incredibly hypocritical that politicians complained about GMP’s handling of ‘hate crimes’ against the Tories.

Seriously? Hate crimes … what are hate crimes?

I overheard one politician aggressively bellow “good” in the face of a protester’s outcry that her disabled friend had died after his ESA had been cut. The protester was neither swearing nor physically threatening; she was however very upset by this shocking response. I also witnessed a young Conservative disdainfully blowing kisses at significantly disabled protesters whilst also making snide comments about ‘paying for their benefits’. (Hence the title and mockumentary below)

The politicians in question may not be taunting with physical actions, or using bad language, however there is something inexplicably disturbing about a person of privilege and wealth mocking protesters in this way. Disabled people, for example, were demonstrating about cuts that enable them to carry out the most rudimental tasks – reacting to their cry by blowing kisses is vile.

Even worse is to tell protesters that it is ‘good’ that a disabled person has died because his or her benefit has been cut. To my mind this is a despicable and unjustified verbal insult, encouraging the worse type of hatred against disabled people.

There is something inexplicably disturbing about a person of privilege and wealth mocking protesters in this way. Disabled people, for example, were demonstrating about cuts that enable them to carry out the most rudimental tasks – reacting to their cry by blowing kisses is vile.

 

Chris Hughes, DPAC member
Chris Hughes, DPAC member

Hanging in the Balance – Nash and Selway

In the summer of 2015,  I collaborated with contemporary and historical photographer, Michele Selway, to produce ‘Hanging in the Balance’.

Made in association with Forge Woodland Residency in the Whirligig Woods, ‘Hanging in the Balance’  symbolised the devastating impact austerity is having on disabled people in the UK.

Using wet plate processes in the remote woodland area, we photographed disability related paraphernalia (such as wheelchairs and walking sticks) hanging ominously in the trees. The emptiness of these images, along with the antique process used, creates a haunting double negative.

Suggesting a post apocalyptic scenario, these images depict the deep sense of threat and despair many disabled people feel about their future: A future that hangs in the balance.

On tour…

‘Hanging in the Balance’ toured across Wales in association with Disability Arts Cymru between October 2015 and June 2016.

Wet Plate, 1 of 5
Wet Plate, 1 of 5

 

 

 

 

 

 

 

 

 

 

 

Follow Gemma’s board #hanginginthebalance on Pinterest.

Follow the project at #hanginginthebalance

Artistic technical support –
Cheryl Marney,  Jana Kennedy and Kris Gjerstad

 

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.”


Care in the Condemmunity – assisted suicide against a backdrop of cuts

Recently there has been a resurgence in the campaign for the right to die, with Margo MacDonald pushing forward the assisted suicide bill in Scotland.

As a disability rights campaigner, I have always sat on the fence with regards to the assisted suicide debate. I have no idea what it is like to live with a terminal illness, be in constant agonising pain or to suddenly lose a significant amount of functioning ability. Nevertheless, I do know what it’s like to live with a significant physical impairment – I know what it’s like to receive good support and to be part of my community and I also know what it’s like to cope with inadequate support, and the negative impact that has.

Against the backdrop of  cuts to welfare, particularly palliative and social care, should we be pushing forward the right to die?  The harsh facts are that cuts to care are going to increase in the next couple of years.  Nearly 30% of hospices have already had their statutory funding cut and since 2007 there has been a 25% reduction in people receiving care at home.  Many of us have already had our care packages dramatically reduced or withdrawn completely.

Across the UK, Councils are limiting home care visits to just 15 minutes, and up to 220,000 care workers receive less than the minimum wage – flouting employment law and compromising quality.  A small glimmer of hope has been the introduction of £3.8b Better Care Fund,  an integrated social and health fund to fill the gap.  However there is concern that this fund will be insufficient and inappropriately used by councils.

Care in the Condemmunity (C) 2013
Care in the Condemmunity (C) 2013

Until we can offer people appropriate care and “right to life”, how can we ethically offer them “the right to death”?

There is an assumption that impairment makes people suicidal because it compromises quality of life.  This is particularly assumed in the cases where people have impairments which are considered “severe”, such as locked in syndrome.  But according to this survey published in the BMJ, three-quarters of people with locked in syndrome were “happy” and only 7% had suicidal thoughts.

The most common reason people commit suicide is depression, and the biggest contributors to depression are social isolation and lack of choice and control.  To put it bluntly if you can’t choose when to get up, what underwear to put on in the morning, and who helps you put them on, you will probably feel disempowered and fed up.  Fair enough, you may still feel thoroughly fed up even with all the support, but you will DEFINITELY feel utterly miserable without it.  And this is my point.

This blog is not necessarily a supporter of the Not Dead Yet campaign, however reports show that there is a direct correlation between welfare cuts and assisted suicide.  Disability rights academics, such as Paul Longmore, argue that in the US assisted suicide rates have a reciprocal relationship with welfare cuts.

Will this legislation be pushing people the Government considers too inconvenient to support into an early grave?  Can we, as a society, morally live with this?

 

draft hanging wheelchzir

Image from Nash & Selway’s latest photography project about the impact of welfare cuts on disabled people in the UK. – Hanging in the Balance. #hanginginthebalance