Archive for March, 2013

9 Movement and a tribute to PALS

March 2, 2013

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?

March 2, 2013

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?

March 2, 2013

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

March 2, 2013

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

March 2, 2013

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.