29 April, 2013 18:40

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

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.

10 Schwanning on

10 Schwanning on
Wednesday April 3, 2013:
It’s not lost on me that today is the 41st anniversary of going blind! 41 years ago, I woke up and looked across at Bob Dylan on the wall. His face had melted into softly grading greys. I’m thinking about the appointment with the brain surgeon today and wondering how to have the conversation about “will it be worse after you’ve finished”, which I never had when the eye surgeon was talking over my head to my mother about what he was proposing to do 41 years ago.
It’s not that I particularly regret what happened back then – well not now, not now I’ve got used to it. I’ve learned that it’s not my fault the world puts up barriers to stop me participating. I can and do reach into that place of inspiration about my aesthetic experience of being a blind person and it is full of immense riches which bring me joy. But brain surgery … well – there’s a struggle and a half to face and I don’t mind telling you, I’m a bit scared.

Morning comes cruelly to my frail body. Three days of a stomach bug is more than a little challenging. I totter baby-legged to the loo, noticing some crashing around going on in the kitchen. Ms Harrison is up and offering me a cuppa. I retreat to my bed to snatch some purposeful oblivion for I don’t want today to be here right now.

Today, I have an appointment with the Neuro surgeon. Today, we will discuss what to do with the pesky Schwannoma sitting merrily upon the base of my Trigeminal nerve.

Idly, I notice my use of capitals, and wonder if this is about some kind of ownership like when some people with returning cancer say “my cancer has returned”. But this fortunately is not cancer and is only on its first and hopefully last visit. Hmm, an interesting form of institutionalisation perhaps?

The combination of anti-emetics, electrolyte replacers and evil drugs to paralyse the bowel leave me feeling like I’ve been out on the razz. But I’m too old for the razz and am not appreciating the mobility of formerly solid walls and doors. Notwithstanding this discombobulation -n, somehow I force my body to dress, attempt breakfast and then eventually, towed by the ever obliging Ms Harrison, to leave the house.

It’s one of those promisingly bright days. My rubber legs take me down the road. We are early. We are in the wrong hospital! Ah they’ve moved base of scull neurosurgery over to what was the homeopathic hospital.

The waiting room is empty. I’m first in. Two blokes, no, three since a third wanders in late, greet me. I describe the experience of the intermittent pins and needles in my face, like sitting on a foot then trying to walk on it.

The chief geezer says the tumour is in a very awkward place and would be a bugger to remove. Attempting to do so might make things worse. There’s no point doing anything until it does. Its slow growing and nowhere near anything else. If it gets much bigger and begins to hurt, he could probably do radiotherapy. The Gamma knife. At this moment in time, he doesn’t propose doing anything will order another scan for nine months time and will see me then.

The sun is out. My toes inside my boots are wriggling with delight. I could dance a jig. As soon as I am out of the room, that is exactly what I do.

No surgery! No painful intrusive interventions that might irrevocably rearrange my brain! I’m free.

Down in the garden in Queen’s Square, I solemnly circumnavigate a nice tall plane tree in secret thanksgiving.

So I now live with a Schwannoma, currently a harmless Schwannoma, but one to be checked in on to make sure it’s not up to something unhelpful. Ok. I think I can live with that for now.
Later, cup of tea in hand, I walk in my garden. So I’m standing on a see-saw dancing with relief. No immediate prospect of dangerous Neuro surgery, balanced with living with uncomfortable symptoms and uncertain whether or when these might change for the worse. What the Neuro surgeon has to weigh up is the risk and difficulty of removal against the likely outcome of that removal. He says it could be made worse. His judgement is therefore that it’s not worth doing, leaving aside just how difficult it will be to do.

What *I* have to live with is the discomfort of the Schwannoma and its future potential to further damage the nerve. At the moment, intermittent pins and needles are uncomfortable, especially at night. Sometimes when they begin, I wonder if they will ever stop, although they always do after about a minute or so. Still there is a fear that, one day, they might not or will morph into something even less palatable.

So I think about the concept of doing nothing. How interesting that the default is always for intervention when this might not be in ones best interest. . And how strange for me – someone whose life purpose is about making change for the better, to sit with this and to be reminded that taking action or doing nothing is never beneficial unless done purposefully.

Guest Blog: In Defence of “Crippled and Queer”

Guest Blog: In Defence of “Crippled and Queer”
Can you reclaim hate words? Asks Maxi Token.
There has been controversial use of a range of derogatory words in art and in campaigns which have provoked ferocious discussion amongst many marginalised communities. Disapproval often hides behind hate words designed to spread lies about and to wound at the very level of identity. A series of “Slut” walks across the world recently caused huge debate not only for using the word “slut” but because some women on the marches chose to wear clothing that others felt were too provocative or portrayed women as sex objects. The women walked to protest against the objectification of women and against sexual violence against women. They used the words and images used against women to express their anger about this hate. The recent death of Mrs Thatcher provoked a revisiting of misogynist words such as “bitch”, and “witch” to express disapproval of her policies. Discussions around the possibility of reclaiming the “n” word have caused similar controversy. My experience has been as a disabled lesbian and in this space I explore the use of words targeting the LGBT community or Disabled People.
Singing and signing in chorus is revolutionary. It unites and inspires people. As a songwriter and poet I use words and tunes to drive the message home, in workshops, on the streets and even in police cells.

! “Crippled and queer” is more than 20 years old. It was inspired by Ian Dury’s “Spasticus Autisticus”, his answer to the ablist patronising rubbish that was the International Year of Disabled People (1981) and all that rode along with it.
Written at a time before being disabled or LGBT was protected in any way in law, “Crippled and queer” attempted to take the words of hate and use them to unite Deaf and disabled LGBT people, as a shield of protection, a banner of courage and a rallying call for action. . The chant asserts who we are, our right to be here and our defiance of those who would hate us. “We are crippled and queer.
We’ve always been here.
There’s nothing to fear.”

In the late 80s and early 90s, through the Disability Arts Movement, deaf and disabled artists were exploring the origin of oppression, taking the words of hate and using them proudly to describe who we were, provoking others to think carefully about the roots of discrimination and stigma. Like all marginalised communities, we scrutinised identity through examination of formerly taboo issues. Pushing at the boundaries, we offended, but we also changed minds, empowered Deaf and Disabled people to feel we did belong and had a purpose in life. We found our power in reclaiming some of the words that had been formerly used against us.
The Disabled People’s movement reclaimed the word “disabled” from its previously common interpretation of describing someone as incapacitated as a result of a mental or physical condition. This disempowering belief was directly challenged by the Social Model of Disability which states that it is the world that creates barriers to stop disabled people being equal rather than as a result of impairment. The creation of the social model made positive the experiences of people with impairments and medical labels who chose to identify themselves as being disabled by society and therefore disabled people. Similarly, the Deaf Community reclaimed the word “Deaf” from a place of abuse to a place of pride. The Cultural Model of Deafness described the experiences of a linguistic minority who faced oppression and exclusion on the basis of their cultural and linguistic difference from hearing people who mainly used spoken language.
Language as a tool of hate was being challenged. Disabled People even explored using the Cockney riming slang for “cripple” – “Raspberry Ripple”. Events called “Pink Ripples” and “Lavender Ripples” created space for Disabled LGB people and Disabled lesbians.
“But was this too obscure, or too fluffy?” we wondered. After all, everyone knew what “cripple” meant. Raspberry or being raspberried didn’t have the same tough impact. Could I sing “We are Raspberried and queer”? Meanwhile, in theLGBT community, we were catching and discarding labels, furiously rowing about whether to add “lesbian” to “gay” or “bisexual to either. No one mentioned Tran’s people and pretty much everyone hated the term! Queer”. We described LGBT motivated hate crimes as “Queer Bashing” and in time the word began to be reclaimed initially just as another word for LGBT people, later to describe a celebration of difference, a rejection of “hetero-normative aping LGBT relationships. Now “queer” is used without apology in many, many LGBT environments and no one “bats an eyelid”.

In singing the chant “Crippled and Queer”, I do not advocate that official language should embrace either “crippled” or “queer”. These are words we use inside our communities, not to apologise for who we are but in opposition to the continued ablism and homophobia still rife in society. We brandish these words defiantly in the faces of those who would beat us with them as they so often strive to do in the playgrounds, on the streets, and in the gutter press. When they are used against us in those places, we rise up in rage and quite rightly demand they are banned because we know that hate starts with a word and ends in death.
By taking the words of hate that have so long been the soundtrack of abuse, we use them as a shield of protection against internalised oppression., Like a bright banner of courage, they declare proudly who we are. So if I sing this on a march, I am singing it as a challenge to the haters. I’m not calling other people “crippled” or “queer”; I’m referring to me and anyone who is singing with me. If haters wield “cripple” or “queer” and mean harm, this is an offense.

The act of sharing our stories, challenging the barriers and finding solutions change us at the core of our identity. The first time we find someone else whose story echoes ours, it shifts us from a place of the outsider to that of belonging. In a safe Deaf and Disabled LGBT positive environment, where purpose is shared and solidarity and unity has been created, performing Crippled and queer” can seal that pact of commitment and action.

Maxi Token
Maxi Token is a revolting blind dyke, mistress of doggerel and mobility-impaired meter and, fall off the step rime, with not much reason at all who likes to sing and make a noise, whether caged, chained up or roaming at large.

“They can lock me away but they cannot stop me singing.”

This Woman’s Not for Mourning

This Woman’s Not for Mourning
You know, I’m thankful for the fact that I am blind and have been blind for 41 years now. I went blind before Mrs. Thatcher really came into any kind of prominance. I can’t see what she looks like, have never seen a picture of her, although her image is vivid to me even as I reflect on the reaction to her death.
I imagine a stiffly coiffure blond woman with headscarf and shopping bag, elbowing her way through crowds, one hand dipping into the pocket of an old person hobbling frailly along, an unpleasant leer on her face. Stereotypes abound – that’s often the nature of the unconscious, my own personal internal bigot! Shuddering, I force the image from my mind and think of daffodils, cakes, anything, even rubbish tips.
For a few days now since Thatcher’s death, I’ve been quietly reflecting whilst listening to music so as to avoid eulogizing radio programs (thank the goddess I don’t have a telly!). It’s been quite nice actually. My blood pressure is down and I feel calm and grounded. Maybe I should give up the Today Programme altogether, for health reasons of course, you know. The Government plan to lavish millions on the send off. The police plan to foil protesters. There is talk of rounding up activists just in case. There are parties going on right now and others planned for the weekend and the day of her funeral. An enterprising activist of my acquaintance is compiling an MP3 of appropriate music to play whilst her funeral is going on. Thatcher was not funny. What she did to the world was not funny. Yet I am amused by some of the ingenuity and flamboyance of the protests. I am bemused by the po-faced objections to celebrating her death. She’s dead! Nothing is being said about her now which wasn’t said when she was alive. The capacity of some people who I thought were quite sensible, to be fooled by her image is really astonishing. They say she is a) a feminist, b) a role model and c) good for women! What planet are these folks on or is it me who has been somewhere else since 1979? It’s right weirded me out! To all concerned about the celebrating and triumphalism I say, the dead are dead. Their families live on. Mrs. Thatcher was not an ordinary member of the public; she chose leadership and high position. AS such, she remains accountable to public opinion. Most ordinary people don’t get huge public funerals costing squillions. With fame comes comment and sometimes that’s rather negative. Me, I think you can’t have one without the other. Get over it!
For all those raising their voices in condemnation of her contribution, there are many more lionizing and praising her – all those who disapprove her and celebrate her demise are doing is ensuring a bit of balance here. I would also say let’s not gloat – although I am not sure exactly what that means in the minds of those who say this. Rather, let’s put our energy into action. Listening to music commentating on Thatcher’s impact and legacy serves to remind us of the battle ground and call us to rise up. Enumerating her deeds and connecting them with what is happening now, is another way. If we’ve forgotten what Thatcherism is, her death reminds us to remember just what she did and how she changed society for the worse and just who suffered because of her policies and practices. Let me remind you of a few of the things she did.
1 Allowed council houses to be sold off, depleting the national public housing stock, leading to ugly xenophobic fights over what’s left which has fuelled the intensions of the far right.
2 Decimated the mining and steel industries, blighting communities across the UK.
3 Supported reactionary and repressive regimes like Apartheid South Africa and Pinochet.
4 Sold off the utilities to the highest bidder trapping consumers into fuel poverty.
5 War-mongered Britain into The Falklands War and propped up the arms industry including supporting nuclear proliferation.
6 Ripped the union’s apart and weakened workers rights.
7 Promoted an individualistic me, me, me society through wage inflation for bosses, wider share ownership and a swollen and greedy banking industry.
8 Presided over the invention and implementation of Section 28, condemning a generation of LGBT young people to terrible bullying, harassment and discrimination.
Did we on the left fight hard enough against her actions and her legacy. How much of it got incorporated into New Labour policies? How much of her individualists charter crept into how women like me approached leadership and influence?
Let’s not fight over what any of us took on, shaped for ourselves and tried to use as we tried to bring socialism and feminism into what we were doing. I continue to maintain that it is better that feminists and socialists gain positions of leadership and attempt to make a difference from the top of the organisation, from its middle management as well as from the front line. Let’s not sink ourselves in sectarian finger pointing either about who on the left was less than perfect in their actions following Thatcher. I believe we have to touch back in on values that underpin what we want our world to be like and to use our energy to fight to create the world in which we can live in freedom and equality with everyone else.
There is a smattering of misogyny to some of the rantings against Thatcher. Witch, bitch, cow, slag, C*nt and so on, with their gender associations, are not appropriate terms to use. We must show clear water between we who hated everything Thatcher stood for and those who also were made uneasy because of her sex. Woman hating is still alive and kicking everywhere in public life. Thatcher did nothing to stop that and indeed colluded with the sexism of politics and world leadership to reinforce gender bias and misogyny. We should not collude with this.
I’ve loathed all Thatcher stood for when she was alive. I’ve blamed her for so much that is wrong and getting worse in our society. So no, this Woman’s not for mourning.

9 Movement and a tribute to PALS

9 Movement and a tribute to PALS
Friday March 1, 2013:

I say it again, hurrah for UCHL PALS! The phone rings at lunchtime today. A cheery soul chirrups. I am reminded of how my mum used to greet a friend from the other side of the housing estate; you know, a real “ooo-ooo”, loud, tunefully, on two descending notes. Well the PALS lady doesn’t exactly coo, but I bet she would, given half the chance.
Anyway, now where was I? Oh yes – She tells me that she’s managed to get me an appointment to see the Neuro-surgeon. Worrying that I will not think it soon enough, she hastily explains what she has done. She got the surgeon’s secretary to put the referral letter (which has finally arrived) in front of the surgeon. He reviewed the details and offered an appointment at the beginning of April.

I’m quite happy about this. Yes, its five weeks away, but the surgeon has obviously made a judgment that a month’s delay will not materially affect my condition. I find this very comforting.

It feels like the sun might come out. I know that the appointment when it comes will decide agreeing a treatment plan which may involve some frightening and potentially life effecting surgery. But, at last, I now know when that conversation will begin. I have a month in which to do other things. That is such a relief!

I ask if the cheery lady will do something else for me. I’ve got to have a spinal scan, can she find out if a referral has been made? She says, that’s another computer programme, and after a few more clicks, she’s into my files!

There are two more letters awaiting sign off. She can’t see what they say until they are signed off, but they look like referrals.

I know I am unbelievably impatient. I’m also annoyingly anxious. But now I know that things are moving, I feel a whole heap better. Phew!

I am also deeply thankful to encounter someone for whom saying “yes” appears to be her default. Now if everyone with the power to affect the minutiae of ordinary people’s lives, like receptionists, housing officers, social workers and the like could have their default set to “yes”, what would the world be like. “Just say * yes * and feel what it is like to positively affect another person’s day!

Pink-washing City Hall or bringing Pride home?

Pink-washing City Hall or bringing Pride home?
Friday March 1, 2013:

Between 2000 and 2008, I for one did my best to Red-wash Pride and levered in a lot of support for it from City Hall. I find it very interesting and slightly distasteful having anything to do with the current City Hall crew, but if I want to effect what they are doing, I just have to hold my nose and get on with it.
We can abandon Pride because City Hall has funded it (well a bit) and will use it to pink wash themselves. We could argue that supporting the equal marriage campaign and getting Cameron et al to come on board, gives another opportunity for this vile government to be pink-washed. But, though it is distasteful to me to have anything to do with something that some Tories like, , I would rather have one more go to try to get a London Pride event that celebrates the diversity of LGBT community because of the positive impact it has on our community when we get it right.
There is another thing, and perhaps this is the most important thing of all for me. I won’t allow homophobes to drive me off the street. I won’t allow fears of being politically manipulated by Boris and the like to stop me marching. LGBT Pride is about showing my pride in who I am in all my identities as a dyke, a woman and a crip. I march in solidarity with all those who can’t be or are afraid to be out, like I have the privilege to be.

In 1987, I went on my first Gay Pride march. At the park, I persuaded some big strong dykes to help me move crash barriers so that we could create a safe viewing place in front of the stage, for disabled people. In the years to come, a range of good and not so good access arrangements would be made. Access at Pride became an exemplar for music festivals to be more inclusive.

What we sometimes do in the LGBT community, changes the world for so many others, and that is also why I continue to do this work. That is why I* am putting energy into trying to make Pride in London more inclusive this year.

Can we heal the community through an inclusive community Pride?

Can we heal the community through an inclusive community Pride? February 28, 2013:

Pretending not to be present, I sneak into the inaugural meeting of the London LGBT Community Pride CIC Community Advisory Board meeting. Following in the slip-stream of Kath Gilesbie Sells, I am only really there to give her moral support. They don’t seem to mind me opening my mouth and speaking, from time to time, which is most tolerent of them as I really have no right to be here at all. . And you know, I am very pleasantly surprised by their desire to be inclusive, and the need to thoroughly examine all plans made by the LLCP to make sure they delivered inclusivity.

The CAB is made up of a number of individuals representing community interests, half of whom are women, with representation from all the protected strands, as we rather euphemistically say in the equalities world. The Disabled Peoples place is being shared by Kath Gilesbie Sells and the newly elected Male Co-Chair of REGARD, the National Organisation of Disabled LGBT people.

Whilst pretending not to be there I do suggest that whoever leads on managing risk on the board should also include equality impact in that risk scoping. There are many things that might put Pride at risk such as lack of money, unsafe practice, failure to get the right permissions and licenses etc. However it is equally important to work to mitigate the risk of Pride failing to be inclusive of all our LGBT + communities. Each of these risks would be disastrous for the organisation’s reputation, not to mention their effect on the community and are every bit as serious as a health and safety failing.

Kath and I also ram a gemmy in place strategically by offering to run Disability Equality Training for the Board, the Cab and volunteers. We say that this is our gift this year but that next year, we expect them to pay for it. If we find that they are not delivering on their inclusion promises, we will withdraw the offer.

So London Pride is on Saturday June 29, and there are a lot of committed community activist working hard to make it inclusive. If we get this right, London Pride 2013 could mark the beginning of a healing process that brings all LGBT people together, united to fight heterosexism and homophobia, instead of each other. Ah me, I can dream can’t I?

8 Impatient Schwanning

8 Impatient Schwanning
Tuesday February 26, 2013:

I’m waiting for a phone call. I’m waiting for a letter. I’m waiting for an email. I resist sitting by the phone. I try to carry on my everyday life, but it is so hard, not knowing what will happen next with the trigeminal Schwannoma schwanning around my brain!
Patience is not a virtue I have much acquaintance with. I’m full of, “I want to know now!” I know what I’ve got is not life threatening, but yet I imagine I feel it furring up the nerve, like a woolly leg-warmer that won’t stop growing.
So, there’s no further news friends. I will wait another day then contact the nice PALS woman to see what more to do.
I’ve been reading up on the Neuro-surgeon I’ve been referred to. He has an impressive CV. I’m glad to see he’s a bit of an expert on guided imaging, which I think is doing micro-surgery whilst using some kind of MRI scanner. Given the scanner is really a rather large magnet (well a magnetic field really), what I want to know is, how come his scalpel and forceps thingies don’t get magnetisedg and stick to each other? Immediately, I picture dancing mini surgical tools chasing each other around my brain in a helpless game of tag – well it makes me laugh at any rate.
So I wait, and try not to feel impatient. Maybe I should take my own advice and give thanks for every breath I draw as proof that right now, at this very moment in time, I’m alive. And if I’m breathing, it means that I’m not crying, so that’s one moment when I’m not desolate, so that’s good isn’t it?

Being a little bit kidnapped

Being a little bit kidnapped
Monday February 25, 2013:
Today, I am temporarily kidnapped by a minicab driver! He does not have enough command of English to understand where I want to go, despite me spelling it out. He can’t even follow simple instructions such as, “go to the end of the road and turn left”, (accompanied by appropriate gestures). Retreating into stubbornness, he refuses to call back to his controller at the office to get help.
I find myself speaking loudly to the geezer. I hear my voice growing posher and hate myself for it. The thing is, I’m on the way to the dentist and my dental phobia is making me retreat behind my articulate Englishness, just as the driver has hidden himself in silence – presumably in the hope that I will either shut up or go away or something – Who knows!
AS we begin to drive rather jerkily away, I get the distinct impression that his silence is about his distrust of my capacity to know where I’m going or my ability to direct him, because I am blind. Outrage fuels my agitation. How dare he assume that I don’t know where I am going!
He says something incomprehensible and my heart begins to race. “Oh my goddess, I can’t communicate with him,” I think, panic sets in. Now I’m used to using my silver-tongued abilities to get me around. I am persuasive, cogent and always clear – I am notorious for clarity and getting to the point. But this facility is lost on him, as he drives dangerously and randomly or so it seems, about the place.
“Where are we?” I keep saying. His response is invariably lost in English so fractured that it might as well have been Martian. We weave our way around the side roads of Crouch End. I have a very accurate mental map of my locality, but he has definitely scrambled it with his erratic swerving. Once or twice I understand the words to say “Crouch End”, but I know we’re not there and the bastard is lying!
I don’t see a way out. He’s driving so fast there is no way I can just get out of the car – anyway, that would be so dangerous. I am imprisoned and I can’t communicate with my captor.
He suddenly stops with a violent slamming on of breaks, flings open his door and runs away! Stunned, I sit waiting; listening to the sounds I can hear on the street outside. I hear footsteps passing. I get out and call out to those invisible feet.
“Where am I,” I ask, tears storming down my face. I am barely articulate as I stand sobbing helplessly, drenched in terror and shame, a grown woman lost and helpless on a street she walks regularly.
The woman who stops is kind. She tells me where we are and I realize that the driver must have stopped outside the cab office. He’s gone to get someone else.
I am already twenty minutes late for an appointment that I have dreaded going to. The driver comes out again followed closely by another driver that I know. This second driver is roundly abusing the first one as “an idiot who shouldn’t be on the road”. Well we agree there. I trail after the second driver and am delivered to the dentist, too late to have my appointment though.
I’m shaking. I sit in the hygienist chair and sob. I’m not a scared cat, but as I relive the incident in my mind, I feel again that sensation of being totally lost, unable to communicate with someone who refuses to listen and who I cannot influence in any way. I am reminded once more that my being blind is no protection from the nastiness of ignorant humanity, no matter how complacent I am about the progress towards disability rights that we have made in the last forty years or so since I became blind.