The Right To Ride

December 1, 2013

The Right to Ride
Why disabled people’s direct action was good for all transport users. I’m going to name check some significant players in the struggle for accessible transport. Well it is DHM!
I’ll start by quoting a song: with grateful thanks to Elaine Kolb who wrote “We Will Ride “which I then mangled to be relevant to a British Disability Rights scene.
“Far too many people have been locked away too long.
We won’t accept excuses, right is right and wrong is wrong. Still the state believes that we should live on charity.
But we’re not going to take this anymore, we will be free.

And we will ride, we will ride.
We have strength and truth and justice on our side.
For united we will fight, defending human rights,
we will ride we will ride.”

Defending human rights: The right to ride, the freedom of movement is a fundamental human right. It is also the key to wider participation and inclusion. If we can’t ride, we can’t take up education, employment, training, health treatments. We can’t exercise our democratic rights, we can’t build and maintain a family and social network, we can’t in truth be part of this world.

A functioning, affordable accessible transport system is the life blood of our country. It’s effectiveness governs our prosperity, amongst other things. I’m a Londoner, who travelled daily since I was five, on inaccessible and dangerous route masters, and from the age of 11, on overland trains and the underground too. As a partially sighted child, my biggest challenges were knowing which bus or train was arriving and knowing where to get off. Some people would say I still don’t know where to get off!

Maybe 1 in 4 of the population is disabled, many more are also older. It’s quite “normal” to travel with children in buggies or with heavy luggage. for All these people, using our transport systems can be a significant barrier, if not impossible.

In 1982 disabled people sat down in the road outside Stoke Mandoville Hospital. We were protesting against the participation in the Paralympics games of South Africa. Alongside me on the tarmac were Keith Armstrong, and the late Vic finklestein South African born disabled activists. I quite liked sitting in the road. about that time, I did it again and again as a woman at Greenham Common, protesting against nuclear proliferation. There was something about putting my body in harm’s way for a cause that mattered to me that made me feel like I was doing something. It was a visceral antidote to the feeling of hopelessness I felt over the hostility of the world towards disabled people, women, lesbians and all other marginalised groups. For I had recently discovered that being disabled wasn’t the problem, it was the way the world is designed.

Another comrade in struggle, the late wonderful Bryan Heiser responded to transport accessibility by developing a parallel transport system. Dial-A-Ride freed many people to ride who had never done so before. But free our people was one of the disabled people’s movement’s demands. We wanted to travel like ordinary people rather than witness the world, second hand through the window of a special bus. For us, this smacked of further segregation.

Keith Armstrong went to Denver and went on an accessible bus. He joined disability rights activists in further protests about accessible transport, meeting Elaine Kolb, who originally wrote “we Will Ride” as an anthem of that movement.

“The world is inconvenienced by disability.
But we have human rights and we are aiming to be free. Riding public transport is one way to get around.
So minister of transport hear us now, we’re freedom bound.”

Inspired by this, Ruth bashall, a transport campaigner, disabled dyke and mother, along with Tracey Proudlock (then Tracey Boothe) and the late Steve Crib decided enough was enough. This apartheid transport system had to go. They organised the campaign for accessible transport, and, getting bored of meetings went out onto the street.

I’d recently acquired a temporary mobility impairment. A badly broken leg left me having difficulty in walking any distance. Buses, tubes and trains were no longer accessible to me. But I was also fired by the justice of the matter. I joined Cat and we sat down in the road.
We didn’t just sit down in the road, we caught buses and held them captive. We bought central London to a standstill.

After a while, the authorities could not ignore what was going on. They nicked us. They carried us up steps into inaccessible police stations, and then inaccessible courts. This made for fantastic pictures on the evening news. charges were dropped but the transport planners were in a bit of a flurry. Our activity spurred on the legitimate crips with their campaigning who lobbied and agitated for fairer treatment.

Spinning on ten years. In 2000, Ken Livingstone was elected Mayor of London. Dealing with London’s transport system was high on his agenda. Initially waxing sentimentally about the iconicness of the route master, he was soon persuade to change his mind by his newly appointed transport advisor Bryan Heiser, his newly appointed board member me, and the vice chair of the transport for London board, another transport activist, Dave Wetzel. We suggested that the bus contracts should be changed and a commitment to an accessible bus fleet be a criteria for choosing the successful contractor.
In a matter of years, London had the largest accessible low floor fleet in the world. At last, Londoners had the right to ride. We altered contracts further to require that the buses talked and had real-time audio visual travel info on them. We also put in place a programme of accessibility to the tube and the over ground and worked with rail track and the train operating companies, via Alice Maynard and others to influence accessible train development. Anbd then Boris came along … and slashed the tube accessibility programme.

We’ve since had the buggy wars. Accessible buses helped those with small children ride too. But the ruling that wheelchair users have priority, for you can bold up a baby but you can’t fold up a wheelchair user has prevailed.
“We are here to tell you just exactly what we’ll do.
We’re fighting for the right to move in freedom just like you. Let every kind of people have the power to be free.
To live and learn, and move and work and love, and vote with dignity. Kirsten hearn November 23, 2013 for Mmoving On MOAT13 DHM event

A brief history of activism

December 1, 2013

A brief history of activism
Disabled People have always advocated nothing about us without us. It’s been central to the fight to end our oppression that we are able to speak for ourselves and to be heard, no matter how we deliver our message or how hard other people find to understand us. So nothing about us without us is one of my themes tonight.

Darkness fell upon me at the age of sixteen! In those days, way back in the early seventies, disability rights were unheard of. It was definitely something about us without us.

The streets were paved with charity dolls with holes in their heads, “plastic Spastics” as we came to call them. Jimmy Savile was hyodling nd dying his hair stupid colours to help us poor benighted handicapped young people. Now we know what else he was doing at the same time. But it didn’t matter, those disabled kids, at least they were getting something?

I ended up in a special school where I got a sort of education. Torn away from my partying sisters, all in the sixth form of the school I had to leave, this was very dislocating. I was an instant convert to Inclusive education, even though my mainstream school’s inability to meet my access needs put me in the special school in the first place.
At this special school, we had five choices of career. We could be social workers, teachers, physiotherapists, secretaries or telephonists. Oh and the lucky ones amongst us could be wives! I didn’t do any of those things! After school, I became a student activist, which exposed me to the women’s movement and then I noticed I was a disabled person! The special school had worked hard to erase this fact from my identity.
I joined the Liberation Network of People with disabilities. Yes I know, doesn’t sound like the social model does it, but you know, we worked on the principle that the personal is political. Like our feminist sisters, we got angry and began to organise!
There was something so liberating about realising that it wasn’t me that was the problem, it was the world. It made it possible to look at barriers and campaign to remove them.

As a blind person of a radical bent, I realised that information was being censored. Through The Alternative Talking Newspapers Collective, we organised to put socialist and feminist information into accessible format. The Campaign for Braille, an access Trade union info campaign worked in the unions to make change and was instrumental in creating self-organised groups within unions that bought disability issues further up the agenda.

In the eighties, nothing about us without us became a lynch pin of how disabled people organised. We formed our own organisations and began representing ourselves. Rights not charity, became our slogan. We fought for the removal of barriers that disabled us being seen as a rights issue. At the same time, we had to bite the hand that fed us, and turn on the charities that had until now, been the only voice on disability.

Logically, having decided that being disabled isn’t the problem, it’s more the way the world is designed, we began to think that actually celebrating who we are as disabled people would be cool. It would challenge the negative stereotypes and make us feel a whole lot better about ourselves to boot. The disability Cabaret scene challenged discrimination, negative stereotypes and much more through poetry, music, film, drama, comedy etc.

But something else was also going on. Most radical movements reflect the wider society’s power structures. Disabled women, disabled lesbians and gays and later on disabled BME began to organise, celebrating our differences arguing for inclusion as people from marginalised communities within the disabled people’s movement; challenging discrimination within and without.

Some of us worked for law reform, some of us chained ourselves to buses. Some did both.
So spin on 20 years. This is a different world. Yes we have some protection in the law, but every day, a hostile government is dismantling all that makes it possible for us to survive. We battle things out in the courts & on the street, on social networks and where they allow us, in the media. And some we win and some we lose.

The social model of disability itself is under attack. So we have to fight back. The UK disabled people’s manifesto is a blue print for doing that. We have to unite to fight to stop the rot that will leave us caged and bound, prisoners of an ideology which would have us silenced, because we cost too much.

The concept of the useless eater is alive and kicking today. We have to fight back.
Kirsten Hearn, 19th November 2013 for Disability History Month Launch.

A life less valid

December 1, 2013

My comrade in struggle Anne Novis has asked me to post the below on my blog. Well said, Anne.
Kirsten A life less valid – When is a hate crime not a hate crime? By Anne Novis MBE

It seems that a hate crime is now not defined by the perception of the victim, his or her family or communities, as it should be in law. No matter how many times a victim has reported each and every time they are harassed, abused and attacked due to race and disability, or being perceived as ‘different’.

As has been highlighted by the case of Mr Bijan Ebrahimi, murdered by one man (assisted by one more), following years of abuse and hostility by many others who lived near him in various homes.

Let me list what we know happened to Bijan, a disabled Iranian man with mental health and physical impairments, bear in mind there is much we do not know yet;

Between 2008 and 2011 he reported harassment 14 times to police Verbally racially abuse
Physically assaulted by people in a shared house
House broken into
Hot water thrown on his chest and feet
Threatened with hostility and death
Property and possessions vandalised
Driven out of his previous home by an arson attack
Mobbed by up to twenty people hurling abuse, threats and calling him names Arrested when he called police for help
Falsely accused of being a paedophile
Beaten to death
His body doused with white spirit and set alight.

His family believe he was picked on as he lived alone, was disabled, vulnerable, and because “he was different”.
In a statement, the family said in one “callous act of unimaginable hatred” its entire world had been taken. …we are gravely concerned that the actions of those men may have been made possible by the failures of the police and others to protect Bijan.
So as a disability campaigner and activist on disability hate crime for nearly two decades, knowing how hard myself and others have worked to raise awareness, improve reporting to police, changing the way police and legislation promotes justice for disabled people myself and others expected the Police, Crown Prosecution Service and the courts to recognise this case as hate crime from the outset.

Why? First because the police have already admitted they let this man down by their actions and poor responses to his experiences, the family had made it clear they saw this murder linked to all the other hate crime Bijan had experienced, and lastly because we have evidenced that many disabled men get falsely accused as being paedophiles as part of a campaign of hate and horror against their victims.

As Katharine Quarmby, a journalist, friend and coordinator of the Disability Hate crime Network stated in one of her blogs:

‘In just over one year, in fact, I found five such killings related to false sexual offence charges, including paedophilia. These included that of Sean Miles, who was stripped, stabbed and drowned after being accused of being a paedophile. Steven Hoskin was similarly accused, tortured, targeted and murdered by so-called friends, who dragged him around on a dog leash before pulling him to a railway viaduct and pushing him off. Now Bijan Ebrahimi takes his place on that sad list of murders – a grim pattern of disabled men falsely accused of sexual crimes they didn’t commit, and then killed with overwhelming cruelty by a lynch mob.’

Katherine and I had worked together on a groundbreaking report called ‘Getting away with Murder: disabled peoples’ experiences of hate crime’, we had also worked with others, advising the Equality and Human Rights Commission on its inquiry into disability related hostility.

Its report ‘Hidden in Plain Sight’, published in 2011, had stated that the false allegation of pedophilia against disabled people was a clear and present danger to their lives.

I have also produced reports cataloging over 70 murders of disabled people and hundred of attacks as evidence for this inquiry.

Through my own experience, work with victims of disability hate crime, and disabled peoples organisations I know any excuse is used to validate abusing, attacking and murdering a disabled person just because they are perceived as different.

From before birth, the abortion of disabled a foetus up to 40 weeks of pregnancy, to segregated education, euthanasia, assisted suicide, so called ‘Mercy killings’, the killing and segregation of disabled people has been justified for centuries and contributes to the attitudes disabled people face these days in society.

Add to this the current political and media stances about disabled people being a burden on the state, unsustainable, fraudsters and non tax payers we are facing vitriol and scapegoating for all the problems at this time.

In the media and in interviews about the murder of Bijan Ebrahimi interviewers have asked ‘Is it reasonable to expect at this time of financial cuts to be able to support and protect disabled people?’

My answer is absolutely Yes! for if we cannot support those in society who need support and protection what does that say about us as individuals and as a nation?

How much money does it take to do your job properly as a police officer, housing officer, MP, or judge?

No extra money at all for in this case, as in many others, it’s the poor responses to reports of hostility by disabled people to these agencies that can lead to deaths and a life of fear and abuse.

So the term used by the Nazi’s about disabled people having ‘ a life less valid’ echoes down the years as we face yet again the lack of justice for a disabled person who faced years of harassment, abuse and hostility before he was brutally murdered.

As for hate crime, I ask as many must do at this time, if Bijan’s experiences and murder cannot be recognized as a result of hate crime by the CPS and court, what can?

How much more evidence does anyone need to understand the lived experience of victims of hate crimes?

Shame on all the people who let this man down, who abused, harassed and murdered him, shame on the UK justice system for allowing such an injustice to occur and shame on those who try to ‘excuse’ such crimes by stating he was partially at fault due to making so many complaints which is what the prosecution used as a defence and shame on those who think it is unreasonable to expect such a victim to be protected.

So now across the country the question has to be asked: when is a hate crime not a hate crime

A B C

October 17, 2013

A, B, C or D?
Speech for Disability Wales Conference, Thursday October 17, 2013. I’m going to talk about Activism and the revolution and what comes after a and b? Heres a bit of a rant!
Nothing I say today makes sense unless we understand this: The concept of the useless eater is alive and kicking in Britain today. 70 years ago, Nazi Germany experimented upon and then exterminated thousands of disabled people in the name of economics. Fuelled by fear and hatred of difference, they sought to expunge the world of disabled people.
The EHRC report, Hidden in plain Sight, exposed the institutional failure to take disability motivated hate incidents seriously. A failure that is systematic and embedded in our institutions today. Now where have we heard of Institutional failure like this before? Yes, in the initial Police response to the racist murder of Stephen Lawrence.
Disabled people come from all communities. We experience discrimination on all aspects of our identity whether that is because we are women, BME, LGBT, younger or older. Whoever we are, discrimination and exclusion make the same pattern. It spells out the same word. It spells out hate! Inclusion London’s Bad News for Disabled People” report revealed the extent of media fuelled hatred of disabled people. Benefit scroungers, malingerers, they call us, and the hate crimes rise as we are insulted, attacked and sometimes killed. The gutter press screams in frenzy. `beat the cheats” they froth, egging on their readers to grass up their fraudulent-disabled-lazy-welfare lifestyle-living” neighbors. They dress up the reasonable adjustments our society makes which help disabled people to live in the community, as perks rather than as services which are vital to our well-being and independence.
And so forever it seems, disabled people have been blamed for existing. We are shunned, excluded and our right to exist challenged; challenged by attitudes that sees us as less, inferior or even unaffordable. The government says that there’s no choice, that there’s no money theyve made squillions of pounds of public spending cuts, carved great chunks off the welfare benefit budget, half of which are disability related benefit cuts.
We cost too much, they say and in a time of austerity, it is we, disabled people, who are expendable.
But the truth is this; it’s the world in which we live that puts up barriers to stop disabled people being equal, not our impairments. Being disabled isn’t the problem; it’s more the way the world is designed. . Medical labels package us for non-disabled convenience and we are denied a right to exist.
Discrimination, inaccessible work places, inaccessible transport, inflexible work conditions are some of the barriers that stop deaf and disabled people getting jobs. If we want full equality in society, we must remove the barriers that deny inclusion and not attack disabled people for existing. Lets see how much money that saves.
Government ideology majors on fairness but fails to see that for fairness to work, the playing field has to be leveled. Through the politics of envy, they divide and rule us. “It’s not fair) screams the right wing press! Fascist movements, EDL, the BNP and the like, pounce upon this notion ride it home, tearing working-class communities apart as they do so. Allegedly, there are green shoots. Oh yeah? Not if you’re disabled and on benefits or live anywhere but the south East. The government offers people who want to buy houses, some financial support to do so. But isn’t that just like the sub-prime mortgage racket which caused the recession in the first place? Most people want to have enough money to feed their family, to keep a roof over their head and enjoy a few humble creature comforts like a week’s holiday once a year, a telly, to buy school uniform for the kids, to pay to replace the fridge if it dies, and the occasional pint of beer down the pub. Safety of tenure and reasonableness of rents is more important than who owns the bricks and mortar surrounding us. Research launched recently revealed that it costs roughly £140k to bring up a child today. How much extra does it cost if that child is disabled? Poverty is a reality for many more disabled people now in Cameron’s Britain. The bedroom tax, the Work Capability Assessment, the attack on independent living, the molestation and ripping apart of vital services that support people to live in the community thanks to cuts forced by the government austerity measures, alongside a still shrunken jobs front plunges more and more disabled people into poverty every day.
The Welfare state has until now kept many disabled people alive and out of institutions. It has help many of us live fulfilling lives, including going to work and being involved in community life. WELFARE Reform will force thousands of disabled people from the community, imprisoning us in residential care, unable to work, denied the right to family life. Our lives will become impossible and some of us will die as a result. And some others of us will take our own lives. Rightly, we condemn repressive regimes abroad, which imprison, maim and kill their citizens. . BUT that is exactly what the Westminster government cuts are doing to disabled people!

The welfare bill is believed by those who don’t support it, to be a bottomless pit into which public money is poured unendingly. Disability Living Allowance is made out to be an unfair perk because it is not available to non-disabled people. But DLA is not a means tested, employment or skills based benefit. Like Child Benefit contributes towards the cost of bringing up children, its there to meet the additional costs of being a disabled person in an ablest world.
This society, aided and abetted by an anti-rules government in Westminster, continues to resists making reasonable adjustments, portraying these as over-zealous regulatory attacks. Society values individual freedom, celebrity, and a “do what you want mentality as long as you make money and don’t want support from anyone else.
But tell me this, why can’t we think of what we spend on Social care, health and welfare as economic stimulators not drains on the public purse? What would that do to change negative attitudes towards those who provide and those who receive care and support? If we give everyone the support they need to live full lives, we open the door to a huge amount of consumer and economic activity. WE also save lots of money because this good care leads to better health and well-being and reduces the numbers of people needing expensive health care. How many beds could we free up in hospitals if when their in-patient treatment is complete, people could go back to their homes with the right support to help them live and thrive?
When we free our people from imprisonment in their homes or institutions, we help them become active members of the community. With the right support, many are able to work (if there are the jobs and their impairment issues can be addressed through reasonable adjustments and access to work). The additional costs of being a disabled person can be met by a Disabled Citizens Income. If the tax system supports those who can’t work full time to have enough to live on, this can also help. But you know, at the end of the day, if there are people in our communities who need additional support to live in some kind of dignity amongst us, shouldn’t the state reach out to help? This, I believe is an indication of a civilised society. We need a non-means tested user led choice way of meeting these additional costs.
Seeing social care, health and welfare as economic stimulants rebrands these areas as positive things to be involved in. Caring and support are important jobs in our society. If we paid carers, support workers, health workers and others, a decent living wage, with good working conditions where they are respected for the important work they do, surely more people will want to do this work?
If we provide the support disabled people need to live as equals in our society, we will generate many more jobs for people to do. Disabled people are able to do these jobs too.

I get Access to Work and DLA. I have the equivalent probably of about 25 hours a week support at £15 an hour before tax. When I was a very senior officer in local government, I had a full time support worker, and along with the DLA could afford to buy additional support for daily living which I funded out of my salary. Many disabled people with more complex or higher care needs could probably employ more than 1 or 2 full time equivalent workers. Workers on a Living Wage are more likely to spend their money in local shops, stimulating neighbourhood economies. Unlike rich bankers and the high-paid, they are less likely to invest it in off-shore savings, cars, property and posh holidays.
We can’t solve the barriers Disabled people face in our society unless we can mirror the solutions across all impairment groups and all diverse groups within our community. The link between poverty and impairment has been well-made in recent Joseph Rowntree reports. Poverty has a deeper effect if you are also from another marginalised group as well as being a disabled person. A recent report by Equalities UK and Scope produced useful evidence about higher levels of impairment amongst BME communities and thus higher levels of poverty. There is a higher incidence of impairment amongst the LGBT community which aside from HIV status is anecdotally attributed to the effects of homophobia on health and well-being. The impact of impairment plus sex, race, sexual orientation, gender assignment, faith, age and class cannot be ignored when charting the incidence of poverty, its effects and solutions.
All marginalised and disadvantaged groups are under attack right now. concept of rights entitlement and inclusion are being dismantled. Equality and Diversity are now seen as bad words. What we need to do is unite and fight together against the attacks that face us all. Reclaiming our Futures is a manifesto drawn up by disabled people describing what needs to change to promote our human and civil rights as disabled people in Austerity BRITAIN. Our plan is to influence all political parties to adopt as much of it as we can persuade them. But mainstream political influence is clearly not enough. We have to drive the message home through our activism, via lobbying, tweeting, blogging, and direct action.
In my youth, I opened my mouth to protest, I took to the streets and I put my body in harms way to protest against discrimination. As I sit down again in the streets, aware that my late middle age knees creak as I descend to the tarmac, my fear dances with my anger. I have to do this, I tell myself, for what else can we do? How can we make them listen? I’m no economist, I’ve only got a CSE Grade 3 in Maths. But it’s clear to me, a numerically challenged disability rights activist and aspiring politician, that Plans A and B aren’t working. What about plan C for Care. Let’s invest in social care, welfare and health to build a better Britain. And maybe we might manage to convert plan C, to plan d for Dare!

Kirsten Hearn 16 10 13 Address to Disability Wales Conference, Thursday October 17, 2013:

/15 minute solidarity challenge

October 8, 2013

The 15 minute solidarity challenge
73% of local authorities still allocate 15 minute appointments, a Freedom of Information request revealed on Monday. I’m lying in bed this morning thinking about this and wondering just exactly what can be done in 15 minutes. I may be blind and live alone, but what if I needed help with daily activities associated with getting up and ready for my day? I’m calculating what I would do and what to leave out when my alarm clock shrieks urgently. Bugger, I’m going to be late, better get up!
As I struggle out of bed I reach for a timer and set it for 15 minutes. Let’s see what I can get done of my morning routine, I decide. Better get a wriggle on then.

07:00 First things first, I should clean my teeth. Can I pee at the same time? Hmm, a slightly unsavory activity, I think to myself and possibly hazardous what with my rather vigorous electric toothbrush. Ok, pee first clean teeth next.
07:03, running into the kitchen, I gulp down my morning supplements with a mug of water and fill the kettle and place it on the hob. I reckon I can shower before it boils.
07:05, “More haste less speed”, I advise myself, climbing carefully into the shower. I don’t want to break my neck.
07:10, the kettle shrieks demandingly. “Okay, okay,” I yell, clambering out of the shower. Dripping, I am at the cooker, filling a mug with hot water and dunking a teabag. I put the steaming cup of tea on the side. 07:11 I bolt into the bedroom to dry my hair… Jolly good thing its short as it only takes me 2 minutes. I’d be buggered if it was thick, long and curly.
07:13, “what’s the time? I ask myself. I grab a pair of pants and wriggle into them.
07:14, scampering into the bathroom, I seize the deodorant and having applied this, am just picking up the moisturizer when a crescendo of urgent beeps, stays my hand. Times up!
07:15, I’m knackered. “That was exhausting”, I think. If I can’t finish the job of preparing for my day without assistance, I’ll have to sachet down the road to the tube, clad only in my big black baggies and fluffy slippers, clean and shining, almost naked, thirsty and hungry. Pity anyone encountering me in such a state; grumpy would not be the word! Fortunately for me, I can complete the job without assistance. I throw on a robe and take my tea into the garden to think. It’s cool and quiet. Good thing I don’t need help to get into the garden to take that morning thinking time that really helps set me up for the day.
So that was 15 minutes to get up and dressed, watered and fed as someone so very charmingly put it yesterday. If that’s all the time I’ve got, I will need to prioritise. Is it better that I get clothes on and not have a shower? Clearly I don’t have time for both. And what about breakfast, I’ve not even started on preparing that. A cup of tea is not going to sustain me for my day. With only 15 minutes of support, if I needed help, that’s what I’d have to do.
Thousands of older and disabled people face these humiliating and life affecting choices every day. Thousands of ordinary people who don’t want to be pampered and indulged, just want to be able to start their day like everyone else. Some people think that washing or breakfast might be optional, but that’s their choice to make. ? If they want to squeeze their getting up and out of the house into a smaller space of time, then let them. They don’t need anyone else to help them get ready for the day. They can choose to give more time if they want.
There’s something inhumane about the violation of human dignity in forcing older and disabled people to have to prioritise what parts of their morning routine they do. My old mum is 87. Every other morning, she has a carer come in to help her have a shower. A bath-a-day woman for all her life, she has had to accept what she feels is a lower standard of cleanliness because she can’t afford to pay for more hours. Oh, and before you ask, she isn’t eligible for support towards her care costs because she is over the savings threshold by a few thousand.
An 83 year old woman confessed to a schocked John Humphries on the Today Programmed Yesterday that she hadn’t had a bath for 3 years. She talked of choosing between what parts of her morning routine could be done. She was also paying towards her care.

“Lib Dems should never be allowed to hold power,” I growl at the radio, stumping round the house completing my toilette. Norman Lamb, Lib Dem Minister for Care in the Coalition government bleats on about voluntary organisations befriending older and disabled people in local schemes designed to build communities. So washing, dressing, peeing and eating are optional activities to be chosen from, as and when there’s time eh? “It’s not like going round to tea with an 80 year old neighbour”, I snarl, plunging my hand into a box of earrings to brighten my all black ensemble I’ve just donned. “And who’d help someone whose hands don’t work anymore put on earrings? Would she have to not do something else? Earrings or teeth? Shoes or pants? “

How can people live in dignity, contribute meaningfully to the world if they don’t have their basic human needs met. The closing of the Independent Living Fund will incarsarate many normally active disabled people to their beds or to residential homes. Some of those in work will have to stop because they can’t be got up in the morning in time to arrive to do a day’s work.
The government has slashed local authority budgets by a third since they came into power. Forcing councils up and down the country to choose between whose care costs they can and cannot meet. Meanwhile, the gutter press howls about lazy people on benefits. The demolition of social care budgets is only going to make things worse. It is already producing an underclass of people locked away in their homes or imprisoned inn expensive institutions , living in degrading circumstances, forced to rely on benefits, hounded because they have no choice but to live off the state. Millions will be spent picking up the pieces left by Tory ideologically driven cuts and foolish Lib Dem policies
. So, if you want to know what it’s like to have to squeeze vital support into ever diminishing time, try the 15 minute solidarity challenge. Set a timer for 15 minutes and see just how much you can do of your morning routine before the time is up. Tell the world what choices you had to make and what that meant. And why not send your pics and blogs to the bleating Mr Lamb.

Political Equality

September 3, 2013

Political Equality
How the Access to Elected Office Fund is helping the fight for electoral equality for Disabled would-be politicians

Experience of injustice came early to me. As a partially sighted child I was bullied and taunted because I was different. I was enraged that it was me they objected to for all I’d done was be disabled.
As I journeyed through the Women’s, Disability and lesbian and gay liberation movements, my rage at sexism, ableism and homophobia fuelled my activism. In my work as an artist, writer and local government officer, I sought to change the world through exposing the outrageous hatred of the different.
I wrote, I ranted, I organised and I sat down. I sat down for peace, against apartheid and for disabled people’s right to ride. But I wanted mainstream politics to take up these issues so I decided to get involved in formal party politics.
My first bid was for a seat on the Greater London Authority. Proud to be selected for the London Labour List, I was unfortunately far too far down it to stand a chance of being elected. Still, I loved the fight, campaigning outside tube stations and on the street with Ken Livingstone, the underdog in the fight. But we gave Boris a run for his money and narrowed the gap hugely by the day of the vote. I couldn’t do any of the campaigning without a support worker and as the Access to Elected Office Fund had not opened, I had to foot the bill, myself.
I was amazed when I discovered that the Access to Elected Office Fund not only existed but would support would-be politicians to get nominated as well as when they had been selected as the candidate. Suddenly, a huge pile of barriers fell away. This well-kept secret needed exposing.
My next bid for office was to seek the Labour nomination for the Hornsey and Wood Green Parliamentary seat. Well blow me down if I didn’t get into the last three! This time, with the support of the Access to Elected Office Fund, I was able to pay for support workers to assist me on door to door canvassing. I believe that it was the fact that I had support workers that helped me raise my profile and get to the shortlist. I didn’t win the nomination, but thanks to the Access to Elected Office Fund, I was able to really enjoy the fight.
Now I’m on the shortlist for a Councilor nomination in Haringey. . If I get it, there will be months of hard work to bring the ward back to Labour. I have asked the Access to Elected Office fund to support me to campaign and research the issues. With their support, I will stand a greater chance of getting the nomination.
If I get the nomination, I will then need the Fund to help me pay for support to be out on the streets and the doorsteps canvassing local people. Support workers can help me produce campaign material, and undertake research about community concerns so I can fully understand what local people want of their councilors. I can’t do this without sighted help.

As a blind person, there are many barriers put up to stop me participating in society. This is reflected in how political parties organize and how would-be politicians campaign. Canvassing on the doorsteps and streets is expected of candidates, but this is not easy to do if you are disabled. In order to run a good campaign, I must keep abreast of local issues and research policy areas so I can say what I will do when I am elected. This is hard when information is very inaccessible. If I am to have an equal chance of getting nominations and participating as a candidate in elections, this is the kind of support I need.
I well remember David Blunket’s fight to get adequate support when he was elected as an MP. He had to argue for additional staff and reasonable adjustments so that he could get the huge piles of ink print information MPs are deluged with, made accessible. David has kicked open the door for blind politicians but there continue to be barriers put in the way of our participation. Government Internet Security policies as applied by different departments put more barriers in the way of anyone using adaptive technology to access information. No one has thought of the impact of such policies on disabled politicians.
Being disabled is still seen by the public as a negative thing. Voters need to be confident that we can do the job. When they see a disabled candidate campaigning well and being supported to do so, this gives confidence that we might be worth voting for. This is why the Access To elected Office Fund is so important.
Unnecessary barriers are put in the way of disabled candidates thanks also to the way political parties organize. Most will plead that they are cash strapped, but I think some fundamental ground rules about organizing in accessible venues or providing things in word documents, are central to good organizing. People wouldn’t organize a meeting and not provide any chairs or refuse to say what the meeting is about, so why organize in inaccessible venues and fail to provide accessible information? There are lots more to do in the party to change this, but I for one as a disabled would-be politician don’t want to have to spend my time arguing to get through the door, I’d rather make policy.
Most parties want to choose candidates who are involved in the work of the party in some way. Activists are expected to canvas on the doorsteps all year round, or do envelope stuffing or phone canvassing. Without support, and depending on the access barriers, some or all of these are difficult to do. Disabled party activists have to rely on the good will of colleagues to be able to do this. Yet if we don’t do it, we’re less likely to be considered when going for a political nomination.
I’m going to Labour Party Conference for the first time this year but the access barriers are daunting. I can’t afford to pay a support worker to go with me so will have to rely on the kindness of strangers if I can’t get access to the handful of enablers provided by the party. I’m negotiating over being provided with accessible information. I’m already tired just thinking about how I’ll manage. It is such a real disincentive to involvement.
What would make a difference for disabled would-be politicians? 1 Clear access and inclusion policies and minimum standards backed by funding, agreed and implemented in all political parties. AS part of this, training to run accessible campaigns and activities integrated into party campaign training. We have to do something so that being an activist isn’t such hard work just to be included.
2 The extension of Access to Work to provide reasonable adjustments for politicians as soon as they are elected, so that disabled politicians can be supported to do their jobs.
3 Mentoring and shadowing schemes targeting disabled would-be politicians and funding to meet reasonable adjustments for disabled MENTEES AND SHADOWEES.
4 The extension of the Access to Elected Office Fund AFTER 2014, to help disabled would-be politicians get onto the political ladder. 5 Most of all, that the parties themselves raise the inclusion issues and do the work to make it happen so that we would-be or current disabled politicians don’t have to keep raising it and instead can concentrate on making policy and doing our jobs of representing the people.

Reaping the benefit: Plan C for Care

August 20, 2013

Reaping the benefit: Plan C for Care.
The Joseph Rowntree Trust has asked a number of key thinkers to contemplate how to end poverty. They didnt ask me, but if they had, this is what I might have begun to say.
Allegedly, there are green shoots. Oh yeah? Not if youre disabled and on benefits or live anywhere but the south East. The government offers people who want to buy houses, some financial support to do so. But isnt that just like the sub-prime mortgage racket which caused the recession in the first place?
Most people want to have enough money to feed their family, to keep a roof over their head and enjoy a few humble creature comforts like a weeks holiday once a year, a telly, to buy school uniform for the kids, to pay to replace the fridge if it dies, and the occasional pint of beer down the pub. Research launched yesterday reveals that it costs roughly £140k to bring up a child today. How much extra does it cost if that child is disabled?
Poverty is a reality for many more disabled people now in Camerons Britain. The bedroom tax, the Work Capability Assessment, the attack on independent living, the molestation and ripping apart of vital services that support people to live in the community thanks to cuts forced by the government austerity measures, alongside a still shrunken jobs front plunges more and more disabled people into poverty every day.
Meanwhile, disabled people continue to be portrayed as scroungers and malingerers. The welfare bill is believed by those who dont support it, to be a bottomless pit into which public money is poured unendingly. Disability Living Allowance is made out to be an unfair perk not available to non-disabled people. But DLA is not a means tested, employment or skills based benefit. Like Child Benefit and the cost of bringing up children, its there to meet the additional costs of being a disabled person in an ablest world.
This society, aided and abetted by an anti-rules government, continues to resists making reasonable adjustments, portraying these as over-zealous regulatory attacks. Society values individual freedom, celebrity, and a do what you want mentality as long as you make money and dont want support from anyone else.
Why cant we think of what we spend on Social care, health and welfare as economic stimulators not drains on the public purse? What would that do to change negative attitudes towards those who provide and those who receive care and support? If we give everyone the support they need to live full lives, we open the door to a huge amount of consumer and economic activity. WE also save lots of money because this good care leads to better health and well-being and reduces the numbers of people needing expensive health care. How many beds could we free up in hospitals if when their in-patient treatment is complete, people could go back to their homes with the support to help them thrive?
When we free our people from imprisonment in their homes or institutions, we help them become active members of the community. With the right support, many are able to work (if there are the jobs and their impairment issues can be addressed through reasonable adjustments and access to work). The additional costs of being a disabled person can be met by a Disabled Citizens Income. If the tax system supports those who can’t work full time to have enough to live on, this can also help. But you know, at the end of the day, if there are people in our communities who need additional support to live in some kind of dignity amongst us, shouldnt the state reach out to help? This, I believe is an indication of a civilized society. We need a non-means tested user choice way of meeting these additional costs. Seeing social care, health and welfare as economic stimulants in them, rebrands these areas as positive things to be involved in. Caring and support are important jobs in our society. If we paid carers, support workers, health workers and others, a decent living wage, with good working conditions where they are respected for the important work they do, surely more people will want to do this work?
If we provide the support disabled people need to live as equals in our society, we will generate many more jobs for people to do. Disabled people are able to do these jobs too.
I get Access to Work and DLA. I have the equivalent probably of about 25 hours a week support at £15 an hour before tax. When I was a very senior officer in local government, I had a full time support worker, and along with the DLA could afford to buy additional support for daily living which I funded out of my salary. Many disabled people with more complex or higher care needs could probably employ more than 1 or 2 full time equivalent workers.
Workers on the London Living Wage are more likely to spend their money in local shops, stimulating neighborhood economies. Unlike rich bankers and the high-paid, they are less likely to invest it in pensions, off-shore savings, cars, property and posh holidays.
We cant solve the problems Disabled people face in our society unless we can mirror the solutions across all impairment groups and all diverse groups within our community. The link between poverty and impairment has been well-made in recent Joseph Rowntree reports. Poverty has a deeper effect if you are also from another marginalized group as well as being a disabled person. A recent report by Equalities UK and Scope produced useful evidence about higher levels of impairment amongst BME communities and thus higher levels of poverty. There is a higher incidence of impairment amongst the LGBT community which aside from HIV status is anecdotally attributed to the effects of homophobia on health and well-being. The impact of impairment plus sex, race, sexual orientation, gender assignment, faith, age and class cannot be ignored when charting the incidence of poverty, its effects and solutions.
Im no economist, Ive only got a CSE Grade 3 in Maths. Plans A and B arent working heres plan C for Care. Lets invest in social care, welfare and health to build a better Britain.

Frontiers of inclusion – the Russian Doll effect

May 25, 2013

Frontiers of inclusion – the Russian Doll effect
At last; a meeting to talk about LGBT pagan issues. This is not the first time pagans and LGBT or queer have been mentioned in the same breath, there’s a long and honourable tradition of organising as queer/LGBT pagans. Queer Pagan Camp has been going for about 16 years according to my maths. The queer faeries have also been about for many years and women’s spirituality has had a strong involvement by lesbian and bi women since the 70s at least.
The Cutting Edge Consortium, a collection of LGBT faith organisations, those with an interest in faith, humanists a supporting organisations such as the TUC and Consortium of LGBT CVOs, have called a meeting to discuss ‘LGBT Pagans – taking part in work for an inclusive society’. Here is another dedicated place to have the conversation about our inclusion. The venue, Treadwell’s a queer owned pagan bookshop in the centre of London seems a fitting place to hold it.
So why am I ambivalent about going? Simply this, Although Treadwell’s is a queer welcoming positive pagan space close to good public transport links; it is not an accessible venue. There are a couple of steps into the shop and then a flight of turning steps down to the meeting room. I put to one side the fact that it’s a bookshop, full of print that is not accessible to me as a blind person, I’m not going to the meeting to read the books, I’m going to the meeting to have a conversation. I also note with regret that Treadwell’s hosts a unique range of really interesting events in that space to which once or twice I have guiltily gone, and which are also inaccessible.

Well was it not ever thus with pagan events generally. In the “straight” pagan world, equality of any kind is hardly on the table, venues and activities are often inaccessible. Amongst more radical pagan groups such as British Reclaiming and Queer Pagan Camp, inclusion is a principle taken seriously if not always delivered. To have a meeting to discuss LGBT Pagan issues therefore which is not at least in an accessible venue is really very disappointing.
As I write this, I remember that long history of agitating for inclusion I’ve been a part of for more than 30 years. Into my mind once more come all the counter arguments which are mainly about money and opportunity. AS I replay the challenging conversations, the refusals to accommodate, the accusations of spoiling everyone’s fun, I think – oh no, not here, not here in this community that is my spiritual home, don’t make me choose again. It’s true, we’re not rolling in dosh so can’t get a swanky venue. It’s true that this excellent Queer run pagan bookshop is in an inaccessible building and I doubt that the owner has the money to do anything about that. In finding a central venue, she and the Cutting Edge Consortium meet the convenience of the majority.

But, but, but .. What about those who want to come who will have difficulty with the access? What does this say to them? They can join in the conversation as long as they can handle the stairs. Is that acceptable? Next time we’ll have it somewhere accessible? What about those other aspects of inclusion that are probably not being provided, such as sign language interpretation, induction loops, accessible information (if any is being used as part of the discussion)? What about them indeed? Well if we’re working for an inclusive society, shouldn’t that be just what we do, make sure that all who might want to be involved in this discussion can? We wouldn’t have a meeting without providing seats for people to sit on and without working lights if held in doors and in the evening. Why would we have a meeting that doesn’t provide other aspects of accessibility? Is it numbers that talk here? Is it money?
Sometimes, I feel like a Russian doll. Inside my roundness is another me, the lesbian me, inside her, the disabled me, inside her, the pagan me and so on and so on. Sometimes the outside me is the dyke, the crip or the witch and everything is in a different order, it depends where I am and who I am with. In all my identities, I have alliances, places where I belong, homes I go to where I can be celebrated and nurtured for that particular “who” I am in that identity. I can get into the meeting but in order to come to this important discussion which addresses two aspects of who I am, I will have to divorce myself from the solidarity I feel with other disabled people who can’t come because of the inaccessibility of the venue. If we truly believe we are ‘taking part in work for an inclusive society’, we should at least move this event to an accessible venue, such as ULU which is round the corner. Let’s push forward the frontiers of inclusion to a place that acknowledges disabled LGBT pagans too instead of retreating behind the fortress of forgotten about inaccessibility.

29 April, 2013 18:40

April 29, 2013

AS Disabled people fight for our lives, where are the disabled Labour Activists?
Why should benefit recipients be able to live in expensive accommodation that people with jobs cant afford? Froths a Tory minister. If you hadnt sold off all the council houses, they wouldnt have to. I snarl as another minister accuses Benefit claimants of making a lifestyle choice. 1 in 3 disabled people live in poverty. ATOs throw disabled people off benefits, expecting even those undertaking debilitating cancer treatment to look for a job. More than 30 people a week die after failing the work capability assessment.
Osborne threatens to cut welfare benefits by another £10B.
The Disability Living Allowance is being abolished and replaced by personal Independence Payments with a significantly reduced budget. Fanning the flames of tabloid fuelled disability envy; government spokespersons assert that disabled people are getting something for nothing, obscuring the fact that DLA is there to meet the additional costs of disability. Beat the cheat tabloid campaigns encourage the lie that Disability related benefit fraud is endemic. The papers scream malingerers, scroungers, benefit cheats, and Disability Hate crimes escalate.
The austerity frenzy also hits services that make disabled peoples independence possible. Cuts will imprison them in their own homes or confine them to institutions. Housing Benefit reductions will force disabled people out of their specifically adapted homes or remove the additional room needed to aid independence or which houses their carer.
Its a fight to the death say disabled people at a State of the Movement conference organised by Inclusion London and other disabled peoples organisations. We pledge to fight back!
Ive been a Labour Party member since 1994. I stood as a candidate in the last GLA lection in London and was instrumental in influencing Ken’s agenda including on disability. But I got little support as a blind candidate and had to pay sighted helpers to meet my access needs.
Trying to participate in general party activities is equally as challenging. Thanks to ongoing disability discrimination, I continually have to argue about disability access rather than policy.
But I have lots to say about policy. If Labour is to win the 2015 election, plan B must include integrating and properly funding social care, health and welfare. We must prove how this will stimulate the economy and create jobs, enabling older and disabled people to be equal productive members of society rather than be seen as the useless eaters of current government philosophy.

The Partys proud tradition of driving forward equality was led by its members via self-organised black, women or LGBT sections. Nothing about us without us, say disabled activists. The history of our oppression is peppered with non-disabled do-gooders speaking on our behalf. So where are the disabled Labour activists?
What will Labour do to stand with disabled people as we fight for our lives? How will disabled members be supported to be a part of Labours plans as we develop the 2015 manifesto?

Getting the hump about being in the cultural desert

April 23, 2013

Getting the hump about being in the cultural desert
Tuesday March 26, 2013:
“But I don’t go to museums” I whine when asked to contribute to this article about museum accessibility. I’m blind and rarely find anything accessible in museums. Mind you, I’ve not been to one for a while. The last time I went (to the Science Museum) I was faced by a mass of smooth screens and buttons. Yes there were noises but I couldn’t see the screens so it made no sense to me.
Trained as a fine artist to master’s level, the necessary frequent visits to art galleries were made boring to me by the impossibility of appreciating what was on display. Because of this, fairly early in my academic career, I set to persuade art galleries to be more accessible. I didn’t understand why sculptures could not be touched.
I petitioned the education department at the Tate Gallery and persuaded them that it would be good to have an exhibition of sculptures which could be touched. “Sculptures for the Blind”, the 1977 Touch exhibition featuring Henry Moore, Degas, Matisse and other important sculptors was the result. The conservators had hysterics but many blind people had great fun and some were even inspired to try out doing sculpture for themselves. The success of this exhibition led to a number of others. I remember curating an interesting one “Please Touch” in the early eighties at the British Museum. In 1984,My sculptures were featured in a travelling exhibition “Beyond Appearances” which included Henry More, Barry Flanagan and Elizabeth Frink which I co-curated with East Midlands Arts. In 1985, I won a Winston Churchill Scholarship to investigate access to museums and exhibitions in the United States and to talk to blind artists whilst there. Nearly thirty years on, where are we now? As museum design has lent on technology, exhibitions have become even more visually orientated and there’s now nothing to touch rather than not being allowed to touch. From time to time, a “special” exhibition opens which specifically includes touch. Extant a blind run theatre company has staged a number of shows in the dark but integration and inclusion is still something that is far from automatic.
Recently, I took part in Sisterhood and after, an oral history of the Women’s Liberation Movement in the UK. 60 women recorded on average 8 hours of contemporary commentary about life for feminists in the 60s, 70s and 80s. The British Library and Sussex University house the collection and there is a website which explores the issues.
Now I’m not a techi and I’m not very patient but I do know how to use a computer. Filled with optimism, I saunter onto the site. Well, yes it seems to be fairly accessible, but I immediately get lost! Lost – how can I get lost, you may wonder? Me, I’m often led down strange paths on websites as I can’t remember where I am and it’s not clear where I’m meant to be. If links are labelled, it’s often rather enigmatically done and in some kind of mysterious language that means little to me.
I don’t want to get too technical about this – especially as I have a very faint grasp of how speech screen readers work, but if there’s a navigation bar at the top of the page, it will be read like a list. There may be “go to content” links, but that will still probably contain more links that I might not want to wade through every time I go to a new page. It is easy to be aurally dazzled by the bewildering amount of information being chattered at me. From thence, it is but a short step to boredom, frustration and grumpiness.
Aha, I think happening upon the search facility. I’ll just search for what I want. Well no, that doesn’t work, I appear not too exist even though I spent hours talking to the interviewer. I try a few more phrases like “disabled women activists” and “sisters against disablement”, but nope, nowhere to be found. Hum – perhaps I’m not using the right words. Maybe there’s a code? Hmmm.
I’m not giving up though. On I wander, getting more and more confused. I am looking for me and I can’t find me. Suddenly I stumble on a list of participants. Ooh is that a link to the audio? Excited now, I search for me. Aha, there I am at number 17. Ooh and there’s the link. I click and wait:
“the web page cannot be displayed” says my speech screen reader laconically. This is followed by a baffling list of instructions which I don’t understand.

People talk about all the things you can find on museum websites. Interactive tours, reading documents, looking at precious objects. None of these are accessible to someone who can’t see the screen. . It’s not like the technology doesn’t exist – what would happen if there was a button to click on to get a description of an image, in the same way you can enlarge an image? What would happen if you could take an audio tour. Think of the creative capital that could be made out of doing audio descriptions of visuals.
Vocaleyes, the audio description charity who have brought theatre to life for visually impaired theatre-goers, are audio describing some exhibitions. Their work brings something to life that is incomprehensible otherwise. It’s possible to go to the theatre without having to take a sighted guide who irritates those sitting around by whispering to their blind companion. It’s possible to go to a mere handful of exhibitions but I can’t just rock up at the National Gallery and get audio descriptions of the paintings in the latest blockbuster exhibition of some famous painter. No, like many other visually impaired colleagues, I still live in what feels like a cultural desert when it comes to museums and exhibitions. And you know, the more I think about it, the more I get the hump about that! So no, I don’t go to museums.


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