BADD 2010: Building Bridges

We all know how we feel about being disabled, right? And how it feels to be on the receiving end of disablism. But what happens when we encounter people with whom we both share so much and understand so little?
I met up with two friends recently who have a young son with a learning disability. And their experiences opened my eyes to my own views about being disabled and left me with all sorts of questions.
The thing we most definitely agreed on was how dealing with disability on a daily basis would be a whole lot easier were it not for ‘other people’. As my friend observed: “What I hate most of all is the pity factor. The looks. The crass remarks like: “Oh what a shame,” which I find a truly awful way of looking at my son’s life.”
I got a sense that both of them were thoroughly worn down by the reactions of those around them, which had led to a magnification of very complex feelings around their two-year-old having a disability. I could see that even as they loved and accepted their child, other people kept messing it up for them.
As Lily Allen (and countless before her) said: “It’s not me, it’s everybody else,” and this is perhaps never more true than when you are disabled and on the receiving end of at best ill-conceived notions and at worst downright prejudice.
We sat in a sunny park and swapped stories about being ostracised, rejected and misunderstood as my son took their son off for a walk on the grass. Oh to be a kid and just get on with getting on, as my son seemed able to do with effortless ease. Meanwhile, whilst it was good to talk, I found I was checking myself before speaking, and very heightened to the possibility that I may at any point make an enormous gaffe.
Because whilst I am 100 per cent conversant with my own condition and the experience of being an adult with a disability, I am not the parent of a child with a learning disability. I have no idea what it feels like to be ignored by other mums and dads because my child is ‘different’ (though I can have a guess) or pitied by friends and family. I don’t do the pity thing myself when encountering anyone with a disability. I also understand the additional emotional exhaustion that comes with fending off the tide of crap that society dumps on people with disabilities in a myriad of small ways each and every day. But I have no idea how it feels to be a mother, or a father, burning with anger for a child we so desperately love and want people to understand and accept.
“I feel I have to advocate for him. All the time.” My friend said. And I felt sad that she wasn’t really getting the chance to just go out there and be a Mum, doing Mum things with other Mums because the other Mums have rejected them both.
And I found myself talking too much, taking refuge in my well-formed social model observations and perhaps pontificating a little. It was comfortable ground, more comfortable than asking about their son, asking what he likes or doesn’t like, what makes him laugh or, well, really anything that would help me ‘relate’ and not cause offence, like so many other people do with their thoughtless actions.
He doesn’t speak, so he gets ignored. He is developmentally delayed so he doesn’t run about with kids his age. I was aghast at my own lack of imagination, sitting there in the park on a sunny day and feeling totally inadequate. And what shocked me the most was my realisation that just because I have a disability it doesn’t by any stretch of the imagination make me able to ‘cope’ with someone else’s. The common ground was in being reminded of how very angry I was for the first couple of years of being disabled myself. I saw their exhaustion and defiance and totally related. And in seeing it in someone else, a warning bell sounded.
Exhaustion and defiance are understandable reactions, but could the anger, the chippiness be a little counterproductive? It’s easy to see how after constant rejections at playgroup, in cafes, in the park, at family events even, the resentment would set in.
But, and I was so totally reminded of myself in this, the disablism radar can malfunction as a result. If we are too primed for bad reactions, are we at risk of putting people in the dock before they’ve committed an offence?
True, I felt I didn’t cope brilliantly with meeting their son for the first time and I beat myself up afterwards about not making any sort of meaningful connection with him. And my retrospective thinking became little non-disabled for a second as I chewed it over. “Why should I know how to react? Did they do anything to make the situation easier? I was never great with small kids anyway...”
Gah! I couldn’t believe I was thinking this way. But I was. And it also struck me that just as I was trying to get a measure of the situation, I had potentially been quietly sized up myself. My ‘disability credentials’ were not in question. But my first, and very important, reaction to their son most definitely was. And knowing they were potentially sitting back with their arms folded thinking “Well, let’s see what she does...” I felt the most able-bodied I had for years. Inadequate, slightly uncomfortable, and desperately trying not to say the wrong thing.
And for a lot of people out there who are not disabled, this is what it all boils down to. I’m not saying that ill-treatment and prejudice don’t exist...just that lesser forms of disablism that we could potentially help with are out there. Of course any sort of discomfort with disability needs to be addressed. But perhaps if we could go into more exchanges in the spirit of sharing information and fostering understanding, we would achieve more than we ever will by getting angry and defensive. God knows, it’s taken me years to get rid of the chip on my shoulder. Realising that some people will never understand, some can be helped to understand, and some positively want to understand ultimately means that you don’t stay angry with everyone. And it also means you can focus your energy on people who can, and most probably will, make a difference.

Park III

Through the railings...

Park II

Winter structures... working in harmony

New Year's Day

A walk in the park on New Year's Day...

What Am I?

Living in a twilight world between the well and the ill I feel not entirely comfortable in either sphere.

Words like recovery, improvement and cure don't sit easily with me. There is no such thing as recovery as we can never recover what we were before illness struck. Illness changes us and it is to be welcomed for doing so. We grow and gain insights that we never had before. Improvement suggests that what went before was in need of enhancement in some way. I don't know. It's certainly an improvement to be using my wheelchair less and driving more in one respect. But was my status as a wheelchair user and public transport regular something that needed 'improving'? I suppose I'll settle for the fact that my health is improved, in some respects. Cure? No such thing. Not with what I've got. I prefer to talk in terms of windows, space, phases, cycles. It makes more sense. Ups and downs. Plateaus, peaks and troughs.

So why am I moaning about improvement, progress, whatever you want to call it? I don't feel so connected with my blogging buddies, because I have been too busy being 'better' to blog regularly. I got a first in a recent OU course and am very proud of the fact that I acheived 92 per cent in the exam. I have pretty much launched a small preserving sideline for friends, family and neighbours and am thinking of doing it on a larger scale. And I've been more involved with my son, making sure we have adventurous excursions and fun together. And in doing all this I've let a world that was supportive, engaging and fun slip through my fingers. Facebook, with all those past acquaintances (only a handful of them actual friends) is dull in comparison. Plus I feel very much in crip corner on there.

Put me in a group setting for people with my condition though (at our specialist NHS clinic) and things are very different. I was told I have superceded the point at which people normally join the group. So I'm now too well. And boy do I know it. No one seems pleased that I can do more than them. People actually seem wary, suspicious, unfriendly and irritated each time I pipe up with some pearl of wisdom or other. The therapist seems to love the fact that she has someone there who is living proof of the pacing therapy they teach actually working (even though it was only a part of me 'improving'). I suspect some people in the group have become so attached to their toxic 'friend' (as I sometimes call long-term ill health) that they are not quite willing to contemplate life outside its clutches. How else do you explain the reticence, the sideways glances?

Of course, if anyone had suggested that I was too attached to my illness a couple of years back I'd have flipped. But was I? I stopped calling it my illness for a start. And these days I try and disassociate myself from any niggling symptoms like pain, noise sensitivity etc. with mixed success. I kind of feel I am doing to get better, rather than waiting to do.

All in all, it's been a very reformative year. And I am hugely different. Even tea with old friends yesterday felt different. Everyone sensed it. No one quite knows where to place me. All I know is I'm in a place that suits for now, and I'm happy to build on it. Tentatively.

Still Here

It may seem as though getting my wheelchair heralded the end of my blog. Nothing is further from the truth!

I may, when I look back, have experienced that sinking to the floor common at the end of a marathon (though I don't recall any turkey foil). And that may have led me to not blog for a while. But actually I haven't been on the floor all that time, I've found myself adjusting to life being radically altered.

The thing is, once you receive appropriate treatment for your condition, all manner of improvements can be noticed. So, once my arms were no longer having to reach beyond their capabilities to steer a mobility scooter, they ached less and were used more.

I have hugged and tickled my son more in the past few months that at any time in the last five years. My arms no longer need pillow support at night. I can give my hair a really good scrub in the shower and can do more potting on of plants in the greenhouse (not that there's been much gardening...that too has kind of been replaced lately).

I have cooked more, typed more (for uni...oh and I joined facebook which has been 'interesting') and indulged in brief bursts of an old passion, DIY - or DIY lite as I like to call it. And then, by accident, I found that I could drive my mother's power-assisted car. I parked it for her one day. And ever since, I've found myself borrowing it on occasion. I went on holiday with my son to Wales. It took three days to get there, and three days to get back. We had a great time. I saw the sea.



When I found a nifty tape device that hooks your ipod up to the tape deck via a cassette, well, I was in heaven. Somehow I prefer listening to music on the move. It's strange. But the fact that I can now listen to music at all is progress! Jimi Hendrix at half volume is better than not at all.
And now I feel that the happy combo of motability car (with necessary adjustments for safe and non-fatiguing driving - gear stick on steering wheel please!) and wheelchair is seriously possible.

So I am hammering my credit cards to get them paid off and next June I plan to be driving, and possibly working. Because being able to drive and not be exhausted by it extends my work options. Being able to use my arms for more than a few minutes at a time means I may have the stamina for some kind of employment. Of course, I may not. All this more of everthing could lead to less in due course.




I've been to Work Directions. They've dealt with countless people with my condition (living in a large urban connurbation has its merits). And they've told me to do some voluntary work (outside the home if at all possible). And then to come back and see them in a few months. To see how it goes. No rush.

In the meantime, I have decided against paying out what seems like a colossal amount of money for a 'life changing' treatment so many people are talking about.

Because, when I assess my life, I believe I've moved things on myself. And yet, I'm always aware that I could crash. I could be back in bed for long stretches, back, back...back. Going backwards? Going forwards? Back and forth. I wonder whether this is a factor I will just have to get used to as I move in and out of periods of differing health. And I wonder if the government departments I currently rely on will have to get used to it too...

Certainly, going 'back' will hold far less fear and disappointment if I've not been 'trained' to rebuild in haste and never, ever look back. And parted with the best part of £700 into the bargain. I wondered for a while if it was possible to get better this way. Now, I don't really care. It's not about getting better. What has struck me lately is my capacity to enjoy things in the simplest of ways, at 'face value'. Yes, being outdoors and more independent has helped that. But equally, so has being indoors and less independent. As I write I haven't been out in the sunshine today, or yesterday. Or the day before. And that's okay too. I'm sure it's lovely. I'll get there when I can.

Express Yourself

I thought I'd leave it a week or so before posting about my new NHS wheelchair. You know, the one that took three years getting to me.




Well, it works and boy has it changed things.

I confess that at first I felt a little unsure. The way you feel when you've been trapped in a really bad relationship and aren't convinced you can love again. That's how it was with my scooter. I suddenly found myself ignoring all its faults...dodgy suspension, creaks, impossibly long reach to handlebars, sluggish, poor battery life (I could go on)and found myself feeling nostalgic.

I fooled myself into believing that me and 'scoot' had had a wonderful time and, lump in throat, I found it hard to look at her (she suddenly aquired a gender too) as she sat, forlorn, in the yard. All those trips to the High Street to get compost. How would I manage that in a wheelchair? More than two bags of shopping. Now impossible.

Then a voice said: "Get real!" and my eyes opened. I was staring at a rusty heap of junk that had been impossible to manouvre in shops and had frankly done nothing for my image, being maroon, which is my most hated colour. It had only ever got me as far as the High Street, which I now confess to trying to avoid on a regular basis. Which means avoiding exhausting struggles with large amounts of shopping, and compost. I have better things to do!

So with my eyes suddenly opened, I found that leaving my scooter out in the rain was exactly what I wanted to do. Ah, revenge! (with a plastic cover, just in case I sell it on ebay).

What I love most about my wheelchair is the newfound and totally unexpected ability to express yourself. In a power chair with such minutely sensitive controls that you could almost control it with your breath I have found myself

• Having a strop. Yes, storming off even, turning on my heel and whooshing down the street

• Wandering aimlessly. My son went into a newsagents I couldn't access due to a large step. So I was left to my own devices whilst he spent the best part of 20 minutes choosing sweets. I found myself round the corner meandering in a courtyard full of bedding plants, pootling up and down puzzling over the bargain that was:
  

"Buy one for £1.49, two for £3!!!!"

• Going for walks. My son and I have taken to going on an evening stroll, and we've had ice cream in the park. This feels far more leisurely now that I have some options in between fast (ish) and sloooooow. The nuances offered by those extra little dots on the speed indicator mean everything.

• I have twirled. In delight. Round and round in the playground, because I could, and because I feel so funky these days. And the skater friends of my son were probably checking out my 900 (two 360s and a 180 for the uninitiated) and wishing they could. In your dreams.
  

My wheelchair is black and silver. It goes with everything I wear, rather than nothing. And more importantly it feels like part of me.

Gardening...Still Without Moving

Part Two

I'll be honest and admit that what I needed was something far more soulful, more engaging and rewarding. And because I don't leave the house much, I looked to my garden to provide. And this is the strange thing...why the garden? I was never into gardening before I became ill, so why now, especially now that I can't physically do anything?

I don't know. Well, perhaps I do. I think it has a lot to do with spaces. Having my own space after so many years of being stifled. Needing a space to escape the overwhelming pressure in my life. Not knowing how to acheive this, but wanting desperately to find out.

Doing up a garden when you can't lift a watering can is a challenge. It requires above all patience during the many long delays that occur when funds dry up and your health fluctuates. I can only afford to get my tattooed gardener in for heavy work about twice a year, after saving furiously. It is incredibly important to me that my son and I have a pleasant environment in a really very unpleasant neck of the woods. Yes we can hear vandals and car theives from our house, but as long as what I look at out of the window is beautiful, I can cope better.

So. Phase One was to cut the hedges down from 12 foot to about nine (across as well as high it seemed) back in May 2007 and spend the best part of a year doing nothing else, though my son did plant a herb wheel. I was recovering from my relationship breaking down and had a pretty bad relapse with my health. We got out and about looking at other gardens, but largely I saved up some money for Phase Two.

We hired a man with a mini digger for £100 and had the whole garden rotivated. It was the only way. It was choked with brambles and terrible overgrown old shrubs. Then everything stopped again for months. I saved up again and spent many hours dreaming of how I wanted the garden to be, and then we were able to put in Phase Three:

A shed and some decking. Yes, yes I know. Decking is passe. Common. Horrid. But it's also great if you can't move about much. It suppresses weeds and gives you a cheap and instant sun trap (if you do your homework and work out where the sun lies in the late afternoon).



Aaagh, it looks ghastly in this picture! And if I'd stopped here, I'd have committed a terrible crime all of my own. But that's the stage we were at for quite a while. We're now into last summer. There were no plants to look at, other than what we'd grown in handbags and filing cabinets. And no path. But we sat in the sun and I formulated Phase Four.

A path. A pond. Some paint. Raised beds. And this is where things really take off. Once the path was laid and the trellis painted and the hole dug, my graph paper design started to take on a reality.