Archive for April, 2010

The jealous Biped!

April 5, 2010

The jealous Biped!

I swear non-disabled people are really envious of the aids and adaptations used by disabled people. It bewilders me that they seem to begrudge the reasonable adjustments that help to make our lives possible.

How many times do I hear non-disabled people speak enviously of the blue badge scheme or the freedom pass. They forget that in order to take advantage of said schemes; one has to live permanently with a level of impairment and consequent discrimination that makes life difficult because the world refuses to accommodate it.

They can have my freedom pass the day the streets become obstacle-free and accessible. I’ll give it back the day I can walk from A to B without fear of breaking my neck or getting lost. They can have it when the world in which we live includes disabled people on equal terms with non-disabled people. Sure, let’s get rid of the freedom pass, the blue badge or even Disability Living Allowance, but let’s do it only when we have full equality and it is no more expensive to live as a disabled person than as a non-disabled person and everything is accessible. Until that day, I’m afraid, I’m hanging on to my so called perks of disability!

“You’re so lucky you can’t see all the ugliness in the world”, says a particularly obtuse member of the sighted public when frog-marching me across a busy road. I feel my ingratitude flare but bite back an impolite response, for we have not reached the opposite pavement and I know which side my bread is buttered!

“I’m bleeding’ glad not to have to look at your ugly mug, that’s for shore!” I mutter to myself as I stump off down the road.

I expect the likes of the daily Mail to bang on about “tear away grannies” and “the dangerous disabled”. It is unfortunate though when the government believes this tosh and decides to consult on the use of motorized scooters. I wouldn’t mind but I know the myths that abound about scooter users and powered wheel chair users too.

Some commentators have suggested that motorized scooter users should have a driving test before getting on their machines. What they forget is that scooters aid mobility on the pavement and are not a car or bicycle substitute. They wouldn’t dream of demanding that all pedestrians have lessons in proper use of the pavements would they? No, the non-disabled envy machine sees an opportunity to take granny and the crips down a peg or two and rubs its hands in anticipation.

So whilst we’re disenfranchising disabled people for their allegedly reckless use of mobility scooters, why not make all wheel chair users have wheel chair driving lessons too. We’ve got to stop them going around running over innocent upright people haven’t we?

Oh and whilst we’re at it, can we severely instruct those dangerous long cane toting blinds so they stop maiming innocent sighted folks? And you know I’m really hacked off at being bashed in the ankle by shopping trolley wielding old folks! Ban the lot, that’s what I say! Make them carry their shopping like in the good old days when they staggered about with their two big bags a-hanging, banging round their knees!

Seriously though, I think that scooter users and electric wheel chair users may have some advice and tips to give new users of said mobility aids in how to keep safe. This could include how to get the best out of the aid whilst maneuvering around the haphazardly moving bipod often to be found littering pavements and other public spaces. Sharing experiences on equal grounds as disabled people is empowering.

I’ve been run over on a number of occasions by my best mate, who drives a tank of an electric wheelchair. Half the time, it’s my fault ’cause I took no notice of her “Oi get out of the way,” the other half of the time it was her fault for not telling me she was heading in my direction. Being blind of course, although I might hear her approach, I’m not going to see her coming. We both accept we have a responsibility to be aware of each other as we support each other to get around.

The vast majority of motorized scooter users are courteous and reasonable in their use. If they run people over, it’s often ’cause they (the bipeds) were not looking where they were going or not listening to the “excuse me, can I get through” of the scooter user.

Last week, a hurrying passenger caught my long cane between his feet and went flying. I was coming round the corner, it was rush hour in a crowded tube station and I was using my long cane as I have been trained to use it, with a foreshortened sweep.

As I heard him crunch down onto the ground, momentarily I felt guilty. Then I thought about it. He was haring along at break-neck speed. He didn’t look where he was going. A moment later and he would have cannoned right into me and injured us both. As it was, the blighter’s impact bent my cane at an almost 45 degree angle which took a burly member of the underground staff a good ten minutes to unbend for me.

People often hopscotch over my long cane as I walk along. I don’t understand why they take the risk, but they sneak up on either side of me and skip across. From time to time, they miscalculate and go flying. It is even more annoying when, whilst doing this, they also bend my stick! A bent stick means I’ll go round and round and round and never get where I’m trying to get!

In my long cane mobility lessons (admittedly a long time ago as these are rarely funded now by councils), I was taught to walk with a shortened sweep to my cane in crowded places so that I wouldn’t run the risk of tripping up people close by. I still try to do this but the consequence is that it is *me* who has less warning of obstacles and dangerous places like steps. Often, when I am doing this and still being walked into by sighted folks, I feel quite resentful. Here I am, putting myself in some danger in order to be considerate to those who can bleedin’ well see where they are going, and they’re still not looking! Honestly, it makes you want to thump them with said mobility aid.

No, its sighted bipeds that need the instructions on the proper use of their legs and their senses not disabled people who use mobility aids. I can’t remember the numbers of times I’ve been behind a biped who has stopped suddenly, veered across my path even started to walk backwards and nearly got my cane up their sit-upon and then had the Gaul to turn round and cuss me for it! I mean . init! Ban the lot of ’em, that’s what I say.

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Holding Snowdrops

April 5, 2010

Holding snowdrops

March 2010

It’s been a long cold winter. On a sunny spring day, I walk in St James’s Park with a colleague. The air is coolly fragrant. I breathe deeply. At last, spring is come!

“Oh – there is a sea of snowdrops dancing in the wind” says my colleague, stopping to gaze.

March 2001

I crouch beside a bed filled with bobbing, jostling little white flowers, their heads demurely drooping. My companion this day, kneels beside me, takes my warm hand in her cool one and draws it towards one of the delicate little flowers. I hold it in my hand.

“Isn’t she beautiful? She breathes. “My favorite flower” she adds.

I stroke the silky petals. I marvel at their fragility. I wonder how they will fare should the winter wind return.

June 2001

I stand in bright sunshine, but I am shivering. I can’t get warm.

At night, I toss and turn. I see her dressed in striped pajamas, her glasses set crookedly on her pale face, eyes closed, lying still and cold. As I watch, the draw in which she lies, clangs shut.

I lean against the rough bark of the squat and whiskery grandmother olive tree. She SITS AND waits with me. In the silence I feel her stillness. It comforts me.

March 2002

It’s spring again. Her former lover and I kneel beside the dancing snowdrops, their heads demurely drooping. Amongst them she stands, little white head defiantly erect.

“Ms-Behaving, a new strain of snowdrop”, reads my companion from the label in front. Reaching forward, I gently touch the disobedient flower

“Hello”, I say. The little head nudges my palm as though to say, “I am here, I am here.”

March 2010

In St James’s Park, I climb over the metal railings. I crouch down beside the flowers. My colleague guides my hand. My palm cups the little head. It trembles in the breeze.

“Thank you for showing me beauty, Tina. I will always remember,” I say silently to the frail flower sheltering in my cupped hand.

Dignity – who’s dignity?

April 5, 2010

Dignity – who’s dignity?

It is fashionable right now to espouse the right to die. but what about the right to live?

Just bump me off when I am past it!” says a comrade.

“Beyond what?” I ask.

“Oh when I’m incontinent and gaga” they explain airily.

I am silent. I am thinking about my own experience with periodic incontinence. Sometimes I grow anxious if I don’t know where the nearest toilet is. There are times when there is no loo . and I am ashamed at my “weakness”.

I have friends who are incontinent all the time and have to wear pads. They don’t have the option to poo in private but they don’t think their lives aren’t worth living as a result.

I think of other friends who are mental health system survivors. There are times when I’ve known them be really quite ill and yes, some people might describe their state as “gaga”. One or two of them have committed suicide, but most live on, working with their different way of relating to the world, finding meaning and beauty in that experience. What they want is for society to have an understanding of how the world is for them. What helps them choose life is to have reasonable adjustments made to support them to remain in the community and *not* an opportunity to top themselves!

I think of comrades who have learning difficulties, some that need a significant amount of support to live but who do so with style and aplomb. I remember two, the friend of a friend who was a high powered head of a charity before Aids related dementia changed his life. People might call them all “gaga”, but with the right support they all live independently and they all give back to the community as much or even more than they take out.

And that’s the thing isn’t it? With the right support we can all face most things life has to throw at us. When the central heating goes wrong, we get someone in to mend it. I can’t read my post (because I am blind), so I get someone else in to do it. If we are dumped by a partner or the dog dies, we can cry on the shoulders of our friends or pay for a counselor.

The issue of course is that we think of the “problem” of impairment rather than what we can do to remove barriers to help disabled people do the things they can’t do or need help with. We all strive to live independently, whether we are disabled or not but we all need help with some aspects of our lives whether it be a heating engineer, a reader or the sympathy of a friend. In fact, what we are all really doing is living “interdependently”, yet disabled people are expected to learn to manage their own lives all by themselves or be deemed to have failed.

That notion of DIY independence then becomes a barrier to disabled people being able to be in charge of their lives. You don’t have to do everything yourself to live a satisfying life. Having support to make choices about your life is *real* independence.

I often hear people say “if I was blind/deaf/in a wheelchair/have dementia (insert your own preferred impairment) I’d want to die. When I became blind (at the age of 16), the reason why I put my head under the pillow and stopped eating, was not because darkness had descended upon me (!), but because some spotty youth I was consorting with had dumped me! At that age, relationships seemed so much the most important thing.

In the months and years to come, I had some times of frustration and anger. What brought me back to the side of willingness to live (on the two occasions I unsuccessfully tried to take my own life) was in the first instance to discover that I was loved by another human being, and in the second one to learn that someone else had a strong belief in my abilities, and actively wanted to support me to fulfill my dreams.

These days, what makes me weep with despair is exclusion and inaccessibility. I maintain independence through a mixture of access to sophisticated technology and being able to pay personal assistants. I believe in myself as a valued human being and can negotiate for my needs to be met/reasonable adjustments to be made to support my participation. If this is to work, others have to also believe that barriers can and should be removed and that I have a right to be here.

For many other disabled people the provision of personal assistants, adaptations to one’s home, adaptive technology, access to transport, peer support and the respect of their community are what make their lives worth living. All of these can be provided if society has the inclination. .

In the early eighties, a friend asked her circle of friends for help to end her life. Her decision was taken whilst she could still swallow, although that facility (practically the only one left to her then) would soon leave her.

I support her right to have chosen this way. The difference was that she was informed about her life. She knew and was friends with many other disabled people. She had lived as a disabled person since birth before acquiring an additional impairment in adulthood which led to the slow breakdown of all her body systems. She thought long and hard about it and planned how it would happen. She even wrote her own really positive funeral service.

I am concerned that others with less information and support may make a premature decision to die. I worry that some disabled people will feel obliged to make the decision in order to spare family of the “Burdon” of looking after them. I fear the rise of the rogue and unscruipulous relatives who would see the legalization of assisted suicide as an opportunity to bump off their inconveniently needy granny and get their mitts on her savings.

Hate crimes against disabled people are rising. In law, fetuses with impairment are valued less than non-disabled fetuses. You can’t open a newspaper or turn on the TV or radio without soon encountering a discussion about “bumping off the disabled”. It’s really hard to feel good about oneself whilst all this is going on.

Images of disability are still incredibly negative. State support for good independent living care is still dreadful. The fear that one will be left alone or with a family member who struggles vainly to support even ones tiniest vestige of dignity, terrorizes many disabled people. Society believes that sans various senses and body functions, our lives are not worth living.

Assisted suicide advocates believe it solves the problem of our “suffering” and is the perfect “solution”. But so-called “compassionate” or “mercy” killing is no different to the Nazi “final Solution”. Let’s ask the politicians vying for our votes in the forthcoming election, what they will do to support the right of disabled people to *live* and not die with dignity.