Transcript Essay of Podcast
A Little Tension
by Hello Little Lady
This A Little Tension artwork and essay has been commissioned by DISCONSORTIA as part of the "A Place at the Table 2020" commissions, funded by Arts Council England.
Initially, the piece set out to look at the often fraught symbiotic relationship between Dwarf People while interacting with society in the U.K., though the artistic process has grown to reflect issues that many disabled people experience too.
“We’re awarding you another three years, as there may be a cure for your medical condition within that time”.
This statement, given at the end of a gruelling, and at times, somewhat surreal tribunal hearing, wasn’t part of the austerity-led regime that we disabled people have come to shudder at the mere mention of.
No, this process was part of a newly elected New Labour party in the late 1990s. Other disabled children from my school, now as young adults, found our eligibility for Disability Living Allowance (DLA), a state benefit our parents had claimed for us since childhood to help with additional support costs, either drastically reduced or stopped altogether.
While the assessors in the tribunal room bickered about how far a distance was on a high street I could walk, when they had asked me how far, the DWP representative and our party stole glances of incredulity at each other.
The experience in that room, professionals on one side of the table, me on the other, and the reason why they decided to award the DLA payment back for that period of time, still baffles and angers me in equal measure.
The CAB advisor who was sitting in the waiting room, on our departure, exclaimed forcefully “fiddlesticks”, which made me jolt. A dawning realisation of what I could not articulate at that age, the absurdity and ableist view of what had been said about my disability. The spoken and the unspoken.
Unbeknownst to me at that time, in that faceless office building, was one of the defining moments in my young life. While my peers were worrying about their A-Levels, university, finding first jobs and their way in the world - I was having to prove how far I could, or more to the point, couldn’t walk. Having to deal with the prejudice and societal expectation that the rare form Dwarfism I was born with, was expected to be ‘cured’.
This experience would take me another two decades to be able to fully comprehend. I realise now, that that tribunal meeting politicised and made me very aware of the impact of political will, public policy and who a person votes for, has on our daily lives.
I’d like to be able to say that this was the only instance of political ideology playing political football in my life. Yet the cumulation of significant and not so significant incidents, in finding others with similar experiences, has enabled me to find the language to be able to process, talk and make artwork about the trauma and oppression faced.
The Wider Context - Many Layers, Many Players
Over the past 20 years, or so, in the U.K., this ideologically-driven ‘work first’ of New Labour or ‘work pays’ of the Conservatives - mantras from both of these political parties - has accelerated welfare reform.
For over 20 years, us disabled people are well aware of our place in society. The devastating impact of the past 10 years of Conservative austerity that has led to 650,000 disabled people either losing or having disability benefits reduced by the end of 2019. (1)
Did you know that corporations are awarded millions from the government? Who then subcontracts the recruitment of healthcare professionals who carry out assessments on the disabled?
A system whereby the government hires the corporation, the corporate organisation then subcontracts out elements of the process, then the employee enacts the policy in a faceless, usually difficult to access office block.
A system that appears to be designed to be of sustenance for the non-disabled rather than the human being sat across the table, despite the “shocking performance figures and outcomes'' (2) by those who have been charged with the responsibility of assessing the disabled.
How as a society have we come to treat disabled people as a commodity?
There is little, to no consideration of the traumatic and emotional impact, such reforms have had on the disability community. Multi-million-pound contracts (3) tendered out to corporations that provide ‘innovative’ healthcare solutions’ are big business. A web of intermeshed tech and health companies providing cost-efficient ‘solutions’ for government back office procedures to reduce the public purse, along with £29-£35k a year to disability assessors to be able to place food on their own tables.(4)
Shameless benefit scrounger
Yet this commodification of disability does not only flourish within its own vacuum. The march of innovation and political ideology, consciously or not, has also been aided and abetted with a complicit media that screams from its daily capitalised front-page headlines about supposed ‘benefit scroungers’.
Whether it’s TV programmes that pits the deserving against the fraudsters - the political rhetoric is fed to the population - on screen and in print, that positions the disabled as either ‘playing the system’ or pity figures from the get-go. Remaining (unsurprisingly) quiet in questioning, for instance, why a claimant had to pull their 17-stone mobility scooter up five steps to get it back inside their home in the first place due to a lack of accessible housing… (5) or why x number of people have died while waiting for their disability benefits to be processed in the last 10 years.
Horrifically for the disabled person, we're now all too aware of how hardened society views us. Living in a fear-based culture that actively encourages its society, or more to the point, our next-door neighbours to report us if they think we are ‘swindling the system’. Left wondering why the population isn’t questioning structural inequalities that disabled people are faced with, day-to-day in the management of our disabilities, rather than being blamed for them.
It seems everyone else is deserving of their claim to the economic and moral compass of how disabled people should be supported and live. Whether that is a politician in a grand chamber, a tech company, a newspaper columnist or an employee. Making decisions for disabled people, or if one was particularly cynical, making a profit out the circumstances a person is born with or will experience at some point in their lives.
But - You Can Walk!
You’re not disabled!
You can walk!
You’re not a Dwarf!
You’re just little!
These statements aren't much use to me when I'm sat staring at the middle of the steering wheel of a car - or the eye-watering costs of adaptations that will enable me to drive safely and gain that all so precious independence.
You’ll be fined if you do not tell us about your medical condition
And the tensions (and additional expense) don’t stop there. As the Department of Work and Pensions (DWP) invests taxpayers time and resources into questioning the validity of a person’s disability, there is another department who will also actively pursue you because of it.
Not because they think you’re pulling a fast one, but because they recognise certain medical conditions may actually pose a threat to the overall safety to society, as well as recognising that your disability does impact on you moving around. The DVLA will fine you £1000 if you fail to inform them of your ‘medical condition’ if you sit in front of the driver’s wheel.
On the one hand, you have to prove your disability for one government department, pleading your case to a stranger who probably has no experience of your particular disability. Or risk incurring a fine if you don’t declare your disability with another.
Talk about confusing… and exhausting.
In 2016, a report by the UN Convention on the Rights of Persons with Disabilities (CRPD) found austerity policies introduced by the UK government amounted to ‘systematic violations” of the rights of people with disabilities, including cuts to disability benefits. (6)
In 2019 - after the general election - it was found 46% of people who had moved from DLA to PIP had lost out financially. (7)
I wonder what historians will make of this particular era?
Will they be sympathetic, will the countless deaths serve to ensure and enshrine disabled people’s rights to live with dignity and respect?
Or will, as it is now, brushed aside as a blip in our history against a backdrop of environmental and economic pressures? With the scapegoating techniques employed so liberally by those charged with looking after society and those who are responsible for what content we consume - ever be brought to task?
You should be grateful
It’s a bitter pill to swallow when we challenge entrenched structural inequality, attempt to make our voices heard, only to be told we should be grateful for what support we are given, especially when set against the backdrop of austerity of the past 10 years.
These reactions - whether seen in print or a disability assessment room, highlight the dependence and reliance by the non-disabled, organisations, and public policy on the medical model, impairment first, notion of disability. Or to put it simply, where society views the problem being the disabled person.
This medical model, so favoured, contrasts and clashes, quite spectacularly at times, with the social model of disability that states that society is disabling.
While I have certain health issues relating to my condition, being unable to access a building fully because there is no lift inside or there is no accessible parking nearby has far more of an impact on me being able to engage and interact with services, to work and build friendships.
Or how the stares and the laughing caused me to adopt social distancing measures before there was even sniff of the word ‘lockdown’ because of the way people react and mock my body on the street.
Are you going to let your disability define you?
This was said to me by a well-meaning career’s advisor in my early twenties. I would go on and still hear this statement in various guises throughout the next twenty years. This, seemingly innocuous comment, along with some other very unpleasant experiences related to my Dwarfism, would send me into a dark place from having to face the conflicting demands of society.
I’ve learnt over the years that, on the one hand, I’m inspirational for getting out of bed in the morning and feel the call earnestly to reject my lived experiences and identity.
On the other, I have to prove these things to gain the support and assistance I need to be able to live an independent life. All dependent on the narrative of a particular part of society I am expected to bend to for existing in any given situation and at any given time.
If you complain - you’re ungrateful. We never said we were. If you refuse to ‘just get on with it’ - it forces the disabled person to reject their lived experiences for a quieter life. The delicate balance of having to ask for help, yet all too aware of the personal cost to one’s mental health, boundaries and life experiences doing so, it comes with.
And then there are the laughs and stares, the camera phones used to objectify and bully, the comedians who continue to mock people with Dwarfism. Then I’m told I’m being too sensitive and that I can’t take a joke. That being born this way was due to something bad that I must have done in a past life… and my head spins, with the prejudice, the structural inequalities, the demands to prove my worth and existence, from a starting line way back.
It’s through this maze of oppressive experiences that the disabled person finds themselves having to navigate living life.
I write this piece being fundamentally tired of pushing. Of attempting to prove, explain, inform, educate - to be continuously met with a wall of gaslighting, indignation and indifference… a little tension, hey...!?!
My experiences don’t always offer me the opportunity to define myself on my terms… think about that for a moment.
With Us, Not For Us
Society's portrayal of a disabled person as someone who cannot walk needs to be, and is thankfully, being fundamentally challenged as we enter a new decade.
Thinking back to that time in the tribunal room, I remember ruminating afterwards, that I had stopped growing several years earlier.
I wasn't particularly taken with the idea of having my legs broken to gain a couple of extra inches either. That that painful procedure would be ‘the cure’ that would stop the stares, inaccessible fashion or the need for adaptations to be able to drive.
Realising, as I researched disability history for this piece, that as a society, and each generation of disabled people have barriers to break down.
To have a say in how we live our lives. To be part of the political decisions that influence so readily our daily lives To be able to walk down the street with dignity and respect. To be listened to and have our experiences validated. To be proud of our identities and what enrichment these bring to the world.
We’re not asking for new world orders. We want the opportunity- to not live in fear, judgement, bullying or harassment. Or to feel sick at the sight of a brown envelope on landing on our doormats. To live with dignity, mutual respect and a society that asks first “how can we help?” Because we don’t want things done for us - we need you to do them with us.
We need a place at the table.
- DWP reveals than 650,000 disabled people have benefits stopped or cut due to Tory changes - The Chronicle - D.Bloom - 16th December 2019
- Quote from Stephen Lloyd, the disabled Liberal Democrat shadow work and pensions spokesman in article Atos and Capita win PIP contract extension - ‘because DWP is chained to a corpse’ - Disability News Service - J.Pring - 7th June 2018
- Discredited firms poised to rake in more than £1 billion from new PIP contracts - Disability News Service - J.Pring on 12th March 2020
- Disability Assessor - OLDHAM - Example of job - sbj medical - as of 12th September 2020 / I was an Atos PIP Disability Advisor - WOWVoices.co.uk - 12th February 2019
- Shameless benefits scrounger who says he is too disabled to work is caught lifting 17-STONE mobility scooter up the stairs to his flat - The Daily Mail - T.Payne - 12th July 2015
- UK austerity policies 'amount to violations of disabled people's rights' - The Guardian - P.Butler - 7th November 2016