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Gordon's D-Zone Arcive (2006-2014)

Sunday, July 29, 2007

DISABILITY CONFLICT

I sometimes wonder if I sound too passionate about the cause of disabled people that non-disabled people think I've got something against them. This was the feeling I got on last Friday's session (the last one) I had with bank employees. Indeed, I was surprised at the anger that I felt vibrating in the room as I explained why the need for access to the built environment, for example, was not 'special' or even 'particular' but ensured that our right (in this case, access to buildings) was given to us. But some of those who spoke the loudest were of a different opinion. I even got the impression that 'we' as disabled people should be grateful for it.

It seems that the people had encountered disabled people who abused the system by being arrogant and demanding rights they were not entitled to - thus expecting 'preferential treatment'. This behaviour, I must say, I cannot defend. And it really frustrates me. Whilst disabled people who are actively working for inclusion are doing their best to promote our rights, other disabled people who do not give a toss about other disabled people have the power to destroy all this. I know it has happened for other groups, but I think some of us should know better. But on to another note ...

Indeed, there were other things that hurt me during that session. Things that, I believe, shouldn't feature here. It's only because I don't want to hurt people (or people I thought were friends). But I must say that on that day as well, I was made to feel ashamed that I went on with my education and that I'm still studying. It's unfair to be belittled because you had been lucky in life at least in one area. It's not a question of any extraordinary 'gifts' I have to get on with my education but it has much to do with the good support I had from family and friends through the years.

And when you're made unwelcome by some disabled people because of the choices you have made, or rather the choices that were made available to you, it's the hardest kind of exclusion I guess. But back to the negative vibes of the crowd ... This is would I wanted to say, if they had let me do it...

"The issue of disability, I firmly believe, is not about taking sides but about claiming rights. Rights that have been denied to us for a long time - and still are!"

This is the reason I started this blog and my activism. I have other interests of course. But that's a post for the future ...
ANOTHER BRICK IN THE WALL?

I’m not the type of person who likes to go oning you about how I made it to university and how life was like there. It wasn’t easy, especially as those years were characterised by high fevers and generally bad health. It wasn’t easy because you get to meet all sort of people – some who are openly hostile to ‘your like’ being at university. I surrounded myself with close friends who did not care about whether I used a wheelchair or not.


I cannot say that this was problem free. There were many times I had to opt out from events just because I knew that I couldn’t possibly make it to the place. Or I knew that given my health at the time, I was practically exhausting my resources. There were occasions, indeed, I felt a burden. This I knew. At the time, the university did not have the canteen accessible from the common entrance.


So every time I needed to go there (which became fewer and fewer), I had to use the service lift. The canteen staff was kind, I admit, but I still felt bad odd having to use this lift. Even though, on second thoughts, people used to call us ‘cabbages’, so I might still qualify as a food stuff… hem…


But the point is this. I have been lucky enough to receive a good education. And with the support of others I did make it and still trying. But then it can be also a source of shame. Especially if you get the sharp end of both the disabled and non-disabled community.


On one hand, the non-disabled community tends to assume you’re unable to keep a job – let alone reason – because of your impairment. On the other, some members of the disabled community (it happens) will tell you that you cannot understand them because you’re really not like them. You got your education didn’t you?


So there’s nothing you can really do but remain silent. In your mind you know you did what you thought was best, but in your heart you feel that you’re at fault because you did so. I still don’t know what to answer here. But I guess it is one of the prices I must pay. Thankfully, local university programmes are gearing disabled people who hadn’t had the chance to further their studies.


Yet, the reality is that I cannot understand why I have been upset by a comment a disabled friend of mine made recently. It’s discouraging to feel that you’re being labelled because of your past or current commitments.

Sunday, July 22, 2007

STRANGE EVENTS …?

The weather over here is overpowering. With temperatures around 40C, I’m sometimes left without energy to lift myself off my bed in the mornings. And that’s bad when it’s during a week, as I need to wake up early (that’s at 6am!)... However, although I expected the summer routine to be slow, I still got to visit places during work hours doing Disability Equality Training. These are basically talks aimed at providing non-disabled people with accurate info about the disabling barriers we encounter on a daily basis and, more importantly,that we have rights that need to be respected without feeling as if you're doing us a favour. Mmmmm...

In fact, from the feedback I sometimes receive, I come to think that my life seems quite different than it actually is. Or rather that people think my impairment gives me the power to look into a parallel reality to the one they’re living in. In this parallel world, I become greater than myself, almost a warrior fighting my ‘sorry’ state and obviously akin to a compassionate god. The downside, of course, is that here I am not really human. I don’t need to enter buildings, or to use the toilet – for instance. And before I forget, I cannot be a mortal man either. And I never seem to age, or get ugly…

Uh, not old or get ugly? I have tested this over and over again. I got greeted last Friday before a talk and a woman my age remarked – “Hey good looking, how may I help you?” The reason I am more convinced that I do not age is that this has happened many times before. And what’s remarkable is that it has happened last morning as well. I still need to have conclusive evidence but it seems that I don’t seem to age or get ugly. I’m not willing to share my secret with anyone, because in truth I think you’ve got to have an impairment or use a wheelchair apparently to have this special gift. There …

The second strange thing I’ve noticed recently is that when I’m eating outside (which is happening often as we go eating out every week in summer), the table next to ours seems to notice I’m a wheelchair user (or simply a wheelchair) and hey presto… they start talking to amongst each other about disabled people they’ve met. Because this has happened only two times this year, I cannot say whether I’m influencing people’s thoughts with my mysterious power of influence or persuasion. Or perhaps not…

The parallel reality that other people may believe I inhabit does not exist. And as far as I’m concerned, I do make people talk about disability but that’s not because of any peculiar force within me. At least I hope not. As for my good looks, well, what can I say, having complete strangers (including doctors, nurses, the janitor, the younger girl, etc.) saying it in the same way and with similar tones is suspicious, don't you think? In truth, for most instances this has happened, it is a remark aimed at ‘consoling’ me, presumably because of my ‘impairment’. Other than the fact it’s insincere, it is also an insult to me as an individual.

So anyone who meets me in the lift next time, please don’t pat my head and call me ‘good looking’. Or even teach me how to manoeuvre my wheelchair. Just keep your strange ideas to yourself. I’m not about to beg either. No way! On the other hand, if you mean it... well, don't hesitate - I like a compliment once in a while. But, and and I can't emphasize this enough:

TRY TO KEEP YOUR HANDS TO YOURSELF!!!

Thanks.

Sunday, July 15, 2007

SENTENCED TO NORMALITY

I’ve been caught up in work and in sorting out some things in my private life. Thankfully, much of what was on my mind is now being taken care of. I’m now settled in my temporary house and everything is going well. I’ve also got some positive news about the progress of my dissertation – although there’s a lot of work that still needs to be done… there… which means I will be absent at regular intervals from posting here…

Perhaps I could say that my life is, like any other, and a ‘normal’ one at that. Yes, life cannot be better… or is it? Last Friday, I was in the company of a disabled friend who insisted that he wanted to be treated as a ‘normal’ person. No way had he wanted to use any walking aids which would make him more independent. No way did he want to be called ‘disabled’. So I might have offended him by introducing him earlier as ‘disabled’.

But what is this fear that makes disabled people reject their ‘impairment’ or status as ‘disabled’. What makes some of us want to bear the burden of ‘change’ on ourselves? Confessions are perhaps in order. I know what it was like when I didn’t want to be called ‘disabled’. I thought it was, more than anything else, an insult to everything I thought I was. I wrongly assumed that it meant that calling myself ‘disabled’ removed the claims to my worth as an individual. I also thought that it would not get me forward in life if I included my ‘impairment’ into the way I saw myself.

Needless to say, like my disabled/’normal’ (?) friend, I persisted in denying my impairment. I would do everything not to appear with other disabled people, or be associated with them. I would exert myself at the point of pain in standing up and walking for distances that literally took my breath away.

There were, of course, some benefits. I was able to act the part so well – when I didn’t use a wheelchair fulltime – which nobody would realise as long as I sat down which meant that I didn’t get the pat on the head right away. I also felt that I was doing the right thing, and that I should aspire to achieve ‘physical normality’ at all costs. Literally.

Nobody contradicted my disillusionment. Doctors, priests and even family members thought that walking ‘normally’ was the only ‘sane’ path that I should undertake. Even if I should fail, the struggle to reach this impossible goal was sanctioned – if not blessed – by everyone I knew. When I made an effort to walk longer, I was praised. My academic success or my achievements in my personal life were somewhat overshadowed by this hopeless struggle.


The road to ‘normality’ leads to … the sea! you either sink or swim. But if you get to swim, remember it will always be against the mainstream current. (Note: This is one of the slipways at the village where my summer house is located. The slipway is leading to a rather calm and murky sea.)


But what did this pursuit of a ‘normal’ body do to me? I can’t really say that my life centred on achieving ‘normality’. For I had many interests, and still have. I enjoy writing, listening to music and discovering new ideas and facts. But it did leave a scar on the ways I looked at myself. For whatever I did, I was not ‘normal’ enough. If I should do even the simplest thing, their would be a lingering thought that I am still ‘lacking’ or ‘failing’ to reach this goal people so much desired that I attained. I was practically living for others, not myself.

And what about me? I denied part of me. Indeed, I was so ashamed of my ‘impairment’ that I would describe myself using any title except the bad ‘d…’ word. Consequently, I felt always a failure at everything I did. I pitied other ‘disabled’ people who I thought worse off than me. I hated my ‘impairment’. Indeed, I hated even my own body for being what it was. Again, my life was not in my own control.

And yet, last Friday brought back the realisation that others have not grasped the self-destructiveness of denying their difference … or the fact that something can be done about it … that they should not be the ones to sacrifice their very identity to be accepted …

Indeed, the tragic thing is that arguing that one is really ‘normal’ means that you’re not only denying your own version of ‘normality’ – whatever it is, but it is also affirming that your position in society is rightfully ‘inferior’ because your body ‘does not work’. It pains me to recall how many nights I have hoped to wake up ‘normal’ in the past. And I am aware that some may still cling desperately to a dream that only leads, if any, to a fragile happiness based on other people’s opinions of what is right and wrong … of what is healthy or sick and ultimately to what is true or false.

Saturday, July 07, 2007

THE NAME I CALL MYSELF

No, I’m not bursting into song right now, or am I listening to “The Sound of Music”. I’ve been thinking a lot lately over the issue of where I exactly do I belong in society in the present. Following the last post, I have received questions and feedback that have set me thinking once again on the path ahead. And to me, the name I call myself – or the group I would like to be identified with – is important as it says a lot about me.

Left: A picture of a white swan trying to touch its own reflection with its beak. I drew this one using my computer. And granted I’m no artist… There will be more of these coming up… as well as photos!


And yes, there was a time when I didn’t want to be called ‘disabled’ r having anyone suggest that. Why? Because I felt ashamed to be identified as not ‘normal’, as for me ‘disability’ was synonymous with ‘abnormality’ and pathetic existences. But now, I find that far from shameful or 'defeatist', calling myself ‘disabled’ implies that I recognise that the problems I face in being part of society are not justified by my ‘impairment’ but that society should take into account who I am and accept my difference.

However, calling me ‘disabled’ does not simply mean I am making a statement to society. It means that I am saying that I share with other disabled people in their exclusion and in the distortion of our life. The story about disabled people, as I speak, is being mostly written by non-disabled people who interpret our experiences unrealistically and interpret every choice we make based on our impairment. By defining myself as ‘disabled’, I am writing my own story.

But isn’t the word ‘disabled’ divisive? Doesn’t it distinguish between non-disabled people and disabled people in such a way that puts them at opposite ends of the debate?

I’ve thought about those questions and think that the fact is that non-disabled people have separated us from the community for centuries. We have been and still are institutionalised, our life stories have been analysed. Our voices have seldom been heard except to be used to evoke pity and a false sense of charity. By naming ourselves, we are claiming who we are.

We are saying that we are not a blob of individuals without our own opinions. We are saying that the standards by which ‘normalcy’ is assessed are flawed and incorrect as we are not part of that measure. In human terms, we are also saying that dismissing our realities is denying that we are human. Dismissing our humanity can happen by pathologising our experience or even by making moral judgements about our life because of our ‘impairments’.

Dismissing our humanity is also saying that we do not belong here. That if we are accepted it is only because non-disabled people are ‘kind’ enough to allow us to participate. It is contradicting the reality that we have emotions, thoughts and feelings that arise out of our humanity. And yet, we must call ourselves ‘disabled’ first because we are still not proud of who we are. We must be aware of that. No sooner do we turn on radio, TV or read a book that when disability surfaces, our humanity is sacrificed by either becoming superhuman or by becoming subhuman and dismal.

And that is one of the names I choose to call myself. Not because I have anything against non-disabled people. Or because I want to distance myself from others (well, I applied to become a hermit but was turned down because of health reasons) … it is because I want to be part of human society on my own terms and with my impairments included in the deal.

To read more about how we may be perceived by non-disabled others and to find out about the oppression caused by ‘pity’ visit a blog by Andrea, an ‘insect psychologist’:
Games People Play (off and on the court)

From: Andrea’s Buzzing About


PS: Things here at the summer place have finally settled down. And yes, that means I've got my old internet connection here once again. But it was a hell of a week!!!

Sunday, July 01, 2007

THE PITFALLS OF PITY

The month of June, which has just finished yesterday, brings back some painful memories I thought overcome. However, I guess that it’s in our nature to remember episodes of pain and pleasure. At least for me, such events are intrinsically linked to who I am today… But I digress… So why is the month of June painful to me?

If I am to answer this question, I need to take you back when I was about 10ears old. I was a boy like any other boy who enjoyed the company of friends and wanted to know as much as I wanted about the world I lived in. But something happened that would change all that. Something that would change my understanding of my society and world for the rest of my life.

And no, it wasn’t an accident or a strange disease which left me with a mobility impairment… thank you very much.

It was when on the local newspapers and media I get to know that my best friend had received a prize for ‘helping his poor crippled friend’ (me that is). I was speechless and betrayed. At first I blamed my friend for it and said I wouldn’t trust him any more. But then I knew that it was all about the way society viewed people ‘like me’ that was the cause of it all.

I suddenly felt inferior and felt betrayed by my teachers, my schools and all the institutions that supported this prize. Sadly, this prize goes on every year and guess what? Non-disabled boys and girls still receive this prize for ‘being friends’ to their disabled ‘less fortunate’ friends.

Whilst I don’t want to doubt the intentions of the children awarded this prize, I feel that this prize still sends across a message that disabled people are less worthy and if someone should befriend them it’s not because that particular disabled boy or girl has something to offer in a friendship but because the non-disabled boy/girl is indeed ‘generous’ and ‘kind’ for being with these children.

It took years and years for my friend and me to rebuild our friendship. Our relationship since then had received a hard blow. And yet, blaming him was the wrong thing to do. It was society that was to blame. The fact that I had suddenly been robbed of my individuality… of whatever made me the boy I was by reducing me to a ‘crippled’ boy… with nothing to offer or give jolted me into a reality I had tried to avoid dealing with.

I then turned to my impairment… was it really to blame?

Thus I came to dislike my body for a long time, whilst I felt slightly suspicious of others’ words and actions for some years after. And even if I’ve changed since then (hopefully y for the better), people don’t still get why it should hurt…
Isn’t awarding a prize for being my non-disabled friend implying that I should be thankful for you because I don’t deserve friendship in the first place?

Isn’t it also saying that I have no value because I’m disabled and so those non-disabled friends who spent their life with me are but sacrificing their time?

Finally, isn’t this also exalting the value of the non-disabled friend whilst debasing the disabled friend?

I am angry that so-called ‘adults’ always seek to impose their values and preconceptions on children whilst discriminating between the value of one over another by rewarding the non-disabled child at the expense of the disabled child. I think this is a thwarted interpretation of ‘kindness’ but it’s a good example of ‘pity’ at work. At the end of the day, both children become ‘puppets’ in the hands of those who want to appear holy and good.

PS: I have to say that there have been a lot of things keeping me busy right now which have prevented from blogging for a while. I’m at a crucial point in my studies when I need to focus more. Besides that, as every summer we move to the summer house I still got to get everything in order… including my internet connection...