Travelling Toilet Tales

Nobody thinks of toilets when they talk about utopias and yet the landscape of public toilets is far from ideal for many people.

 

 

Accessible family room at Gloucester Services. Photographer — Imogen May 2016

The Around the Toilet project has recently been awarded two funding grants by the Arts and Humanities Research Council (AHRC). This will allow us to continue the work we started in 2015, carry out new research over the next four months, and participate in the 2016 Connected Communities Research Festival Utopia Fair in London in June, where the outputs of our research will be exhibited.

Our first project, ‘Travelling Toilet Tales’ (led by Jenny Slater) will be an exploration into the ways in which everyday journeys are planned around the un/availability of a suitable toilet. We will be making an animated film based upon people’s experiences of these ‘toilet journeys’: journeys that can’t be taken due to a lack of a suitable toilet, journeys that are re-planned due to a lack of a toilet, imagined journeys based on an ideal world with the best possible toilets… or something else entirely!

Door for an accessible bathroom found here: http://www.gloucesterservices.com/. Photographer — Imogen May 2016

This project is a collaboration with Gemma Nash from Drake Music, an organisation working in music, disability and technology, and Sarah Smizz, the graphic artist who drew the stories told in the Around the Toilet workshops we facilitated last year. Our collaborators will transform the toilet tales provided by our storytellers into a soundscape overlaid with animation. This will be presented as a film exploring toilets, place and utopian imaginings to be shown at events and exhibitions, and available online. Details about where you can view the film will be announced in the forthcoming months.

We are also very pleased to be working with Morag Rose of the Loiterers’ Resistance Movement, who will be facilitating a city walk in Manchester around the theme of public toilets and urban space.

Servicing Utopia

Our second project, running in parallel with the first, is ‘Servicing Utopia’ (led by Lisa Procter). Working alongside MA Architect students, Niki Sole and Suki Sehmbi, we will be facilitating workshops which ask attendees to engage with and construct a digital ‘Toilet Toolkit’ (the main project output). The digital/visual toolkit will be aimed at architects to promote the accessible design of toilet spaces.

We will also be making an animated film over the course of the project, documenting insights from the project workshops with architects to illustrate key themes relating to toilet and accessibility.

The films, toilet toolkit and other outputs from both projects will be previewed on 24th-26th June at the Utopia Fair, Somerset House, London, a public event showcasing a range of academic and artistic projects that engage with the subject of ‘utopia’. This year’s theme takes inspiration from the 500th anniversary of the publication in 1516 in Latin of Thomas More’sUtopia. From March to June 2016 the Festival is supporting activities across the UK bringing together researchers and communities to creatively explore diverse perspectives on community futures and what ‘utopia’ means for communities in the 21st Century.

We’re very excited to get started — please keep an eye on our progress by checking the blog and twitter, as usual!

Jen, Lisa, Emily and Charlotte

@cctoilettalk
#cctoilettalk

Originally published ataroundthetoilet.wordpress.com on March 15, 2016.

 

 

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, adaptations of the cabs and so on which led to work being done. Some cab drivers got the new licenses but didn’t make the cabs accessible which ended up going to the appeal court in London to uphold Manchester’s stipulation – Manchester was a real trailblazer in that respect”.

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.

These initiatives certainly influenced my decision to move to Manchester in the mid 1990s.

The current climate…

Lorraine and I discussed the contrast between the ‘rights based’ campaigning of last twenty years, and the current ‘benefits based’ campaigning. We also discussed the idiosyncrasies of Manchester’s current independent living policies and the alarming shrinkage of the public sector both locally and nationally.

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.

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. Here I would argue we must have the right to live, before we have the right to die.

“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.

“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.”

Lorraine Gradwell, MBE
Lorraine Gradwell, MBE

“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

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

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

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

 

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