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

Wednesday, December 26, 2007

CHRISTMAS SEASON BLUES


I always tell myself to avoid at all costs watching some programmes on TV during the holiday season. But, alas, I end up having to watch (or endure) another broadcast that should make us feel good as people for this season of good will and cheer. Not, perhaps, if you're disabled.


Apart from surrendering to my curiosity to watch part of 'A Christmas Carol' featuring Patrick Stewart, with the 'brave' and 'patient' Tiny Tim ending with his message of courage 'God bless us all' ... Which wouldn't be a problem if it wasn't that the fact he was a 'cripple' meant that his life was unbearable ... So the fact he was good nature made him look saintly or even the embodiment of virtue - not a real boy with sad and happy moments. Unfortunately, we are also made to feel - not love - but pity to the young Tim which is what some people still feel when they see disabled people. Perhaps we could hope that since Patrick Stewart starred in Star Trek in the past, his role of Scrooge might imply that the characters are coming out of yet another science fiction film. At least, give me Tiny Tim as an alien ... Please?


Anyhow, I was upset by a story aired on the news on a man who after getting out of a coma had to learn how to move again after his 'paralysis'. Well, he is now on his way to a full recovery after receiving therapy at a named institution. So, we're told ... 'he has now overcome his disability' ... We are told that we should draw courage from his fight against his tragic circumstance... Well, an appeal is finally made for someone to employ him... Of course, I don't have anything against the guy but the damage such reporting can make on our disabled life cannot be underestimated.


First, I find the man being described as having been 'paralysed' as misleading... After all, he is shown walking and exercising ... Unless I am not mistaken, paralysis is so far irreversible. However, the most serious and dangerous claim is that we can - with the right attitude or therapy - overcome our impairment. So, this implies that all of us - blind, deaf, intellectually impaired, with mental health problems or physically impaired should end our pretence and start working to 'normality'. Yeah, right!


This is what I was led to believe when I was young. Cannot walk that much ... My fault! I'm not trying enough ... Cannot straighten my knees ... My fault too!!! Etc. So, I was faced with a choice of either giving up on accepting a lower status I believed was tied to impairment or to fight a hopeless battle to fix my body.


I'm not saying that therapy or medical intervention are evil here. I'm just saying that not all impairments can be ameliorated and also that we do not seek to be normal. And, to answer a woman who suggested - during a charity marathon - our life is NOT a 'life of constant suffering' ... Well, at least, when we're not compared to Tiny Tim or else hopeless burdens.


I was doubtful whether I was on the right track when I chose to commit myself to disability activism. Witnessing this false readings of our experiences, where we are made to feel guilty for not trying enough to 'normalise' our bodies while society is not expected to change ... Or when we're made to feel less than other people because we are different ... Has compelled me to renew my passion to the change for my life and for the life of other disabled people. We cannot keep looking at disability as a personal problem because until the barriers in our environment aren't overcome, our disability can never be overcome!


I wish that this Christmas was better but then, there should be more of this disabling reporting and speeches yet to come. Yes, if you switch on TV or radio during these times, you could be pardoned for ending feeling self-pity or being made feel guilty for not showing enough courage and shake off your impairment. But we all know that the greatest injustices in the world are made by human beings... Not by nature or even God.


However, to be totally honest, another reason why I think that opposing disabling tendencies in our society is of crucial importance, is that I want to be witness to a new generation of young children - disabled or not - who are open to diversity and to difference. After spending the best part of the afternoon playing with my nephew Matthew, I realised that in another time this just wouldn't have been conceivable. True, he is learning that I'm different as he asked me for the first time about my bent fingers. But I explained to him about arthritis in a matter of fact way. With no melodrama or sad faces.


For it is a fact isn't it? Why should I be ashamed of something that I didn't choose and yet that I learned to adapt to. Why are we bombarded with images that put us down as less fortunate? Why cannot we simply look at ways we can dismantle the forces that are dividing us? Or go beyond the falsehoods about a life with impairment that abound?


After talking to Matthew, we continued playing, and then when he had to go ... He hugged and kissed me goodbye. Yes, I was close to tears I admit. And that's because I knew those signs of affection are not motivated by pity but were sincere. Truly, I'm also proud of my 5 year old nephew Matthew...

Wednesday, December 19, 2007

IDENTITY AND DISABILITY


During the time I read for my course in Disability Studies, I often asked myself whether it mattered to me if I was disabled or not. At face value, the answer was simple. Yes, of course it mattered. But, on the other hand, if I had not been disabled, would it matter as much? This question, I think, is an important one the more I get to know different people in society - ranging from the van drivers to educators, from doctors to managers. After all, I have never lived a life without impairments and I can never position myself in a non-disabled set of mind... or can I?

But then again, I realise that nobody can be in my place. My individuality, my personal likes and dislikes, (etc etc) are not bound to my physicality. Before you snooze and press a wrong button, I'm only saying that my identity as a person should not be tied to who I am, so to speak, as a 'body'.

And then again, is that really true? Our bodies, whether we want it or not, are the means by which we present ourselves to the world. But our bodies are still not who we truly are. In the past, I have enjoyed going online and meeting people through the virtual world of the internet. Nobody would know who I was, or whether I had an impairment or not. But it still mattered to people if I got to tell them this fact. The usual replies ranged from pity to admiration.

At first it seemed fun to pretend to be someone else. But, in truth, the fact was that some people who I met through these virtual communities (I no longer frequent) would have probably treated me differently had we met personally. Even if my first realisation of my disabled status came earlier on, such online experiences made me understand deeper the cultural roots of disability.

Tuesday, December 18, 2007

IT'S TIME TO CELEBRATE ....

This year I've got a special reason to celebrate Christmas. Well, after two years of working on my Masters degree, I can finallly say that the waiting is almost over... as I receive preliminary feedback on these years of work. However, I am well aware that now that these two years of my life are coming to their natural end, I have to think about the career I'll be pursuing. I've already started the process, mind you, but now it's definite. I've got a future to forge ahead.

As I contemplated my 'final days' awaiting my (provisional) results, I have been struggling to discover what I want to do next. Surely, I need a more secure source of income but, apart from that, I want more. Indeed, as the holiday season approaches, I know that what I want cannot be realised in a day, a month or a year. It's a metter of years, or even decades.

Just yesterday, for instance, a well-meaning health care professional commented that she always saw me with a smile on my face. Such a comment could be interpreted as a compliment, and indeed it was meant that way... but I fear that such absolute statements such as 'always' or, on the other extreme 'never', seem to condemn me to a particular character. As if I'm always happy... or smiling for that matter!

And if I'm totally honest about it, it's this naive judgements about who I am because I appear different that make me angry. And I know that I'll be exposed to many images that talk about people with different impairments in the coming days. For charity fund raisers, most probably, we'll be served the image of the 'less fortunate', the 'poor thing' or brave people 'fighting adversity'.

What do I want then? I just want to be whatever I can be, not socially bound by prejudice and assumptions. Not excluded from my society just because I'm forgotten. I don't want money if I can earn it, pity if I can have respect, or concessions if I can have rights. Finally, I don't expect others to tolerate or accept my body for what it is. But please, do not impose your own preconceived notions of disability on me. Ever! And that's not just for the Christmas season ...

Tuesday, December 11, 2007

DISLIKE THIS LIKE


(right) Little Man Pissing

Statue of a young boy err... pissing

and a famous monument of Brussels.

Photo taken by N J Cardona
(my older brother)

Unfortunately, I haven’t found much time to update my blog. After I finished my research project for my studies, I found myself torn between different priorities. First I had to start thinking about my future career and second I was invited to a conference in Brussels. Besides all this, I haven’t been feeling that well about myself. Or more precisely about my impairment.And about how you can get pissed off because of what people think of it...

It all began when I decided to go through the process of finding work as everyone does. And since we’ve all gone high tech here, the process now involves fingerprint recognition system. Good if your fingers are straight and all that. But bad if you have arthritis. I tried it once, twice or thrice but then the machine tells me that I’m not do ing it right. And forgive the machine… some people (who should know better) tell me that my fingers are not, well adapted for the machine.

So, if I got this right… the machine is ok but I must change my body –indeed my whole physiology – for the process to work. What’s wrong with that picture? It fits to the story of many of the experiences I’ve had growing up. My walking is bad, not the fact that the world around me rejects different (perhaps more artistic) ways of walking… Then my wheelchair is badly designed … because it doesn’t fit a lift designed to hold two persons … what else? Yes, I might be consoled by the fact that after assessing my medical history, a doctor sighed and said – wait for it – at least “I got brains!” So it would be pathetically tragic if I had an intellectual impairment as well, would n’t it? As if one could ever measure intelligence with some pieces of paper labelled 'IQ' tests ...

I was particularly struck by a note a speaker made during the last Friday’s Brussels conference on media and disability. He wanted the media to ‘normalise’ our experiences. Of course, I know what he meant … putting us across as part of society, occupying any other jobs or roles in society, having families of our own… etc. That’s my dream too. Yet, I don’t like the word ‘normalise’ or its derivative ‘normalisation’. I remember when I was a pre-teen, praying God to have this ‘burden’ of an impairment taken away from me.

The nights spent crying because no girl would look at me or even consider me as a man in my late adolescence. Pretty personal stuff, yes, but factual. I don’t want that children who have impairments today go through the same issues I faced when I grew up. Because on going through assessments that I’ve been through in these two weeks has reminded me that, irrespective of what I wish to believe, parts of society still would have preferred me physically different. And see me differently simply because I ‘walk’ on four wheels and because I am too gorgeous for them to approach me (I’m being particularly generous with the term here as beauty is in the ‘I’ of the beholder).

And for no reason other than the fact that you are judged by your physical characteristics and largely socially-imposed limitations, you sometimes wonder whether you should dislike who you are or your body and strive for a better body and mind. Then, without realising it, you end up hating what is, in essence, someone unique and irreplaceable. And I’m not speaking about just me. I’ve heard many disabled people who wish to be physically ’normal’. I was one and sometimes become one.

But then, is it a solution for black people who are subject to racism to become white? Is it a solution for women to reject themselves and transform themselves to males to fight sexism? Is it an option for people of minority faiths or beliefs to reject their traditions to become ‘one’? Is becoming ‘one’ meaning we lose all of our diversity, all of our differences, and be ‘normalised’? Would that be a better world? It would be a hellish place I think.

Hope to be able to defrost since it’s getting rather cold over here. I needed to get this out of my system. I hope to compensate by writing a livelier blog in the future. Hopefully after I’ve sorted out the things that need sorting out. Try saying that five times without stumbling in your repetition.

Tuesday, December 04, 2007

5 reasons why life CAN suck if you're disabled ...

Yes, I've finished my dissertation and hope to recover from the sudden void that's in my life. No, seriously, I'm now on a mission to do something with my life. However, in spite of it all, I hooe to start blogging again...

But, on second thoughts, after a number of public appearances I discover that it can sometimes beat you down being disabled. Here's why:

1. Whatever your achievements in private or public life, you are pitied.

2. Complete strangers feel that they are better than you because you use a wheelchair, or cannot walk.

3.You get talked to as if you were from Mars, or Venus...

4. You get unwanted affections from people you'd rather not (no need to go further on this one)

5. You get complimented on your speech/words, but you quickly realise that they weren't paying attention to what you were saying in the first place.

But then, they think you're cute!

This Thursday I'll be off to Brussels fo r a media conference...

Bye for now (unless I figure out how to blog from far, far away ...

Friday, November 02, 2007

BLOG ON HOLD

Unfortunately, due to my academic work I was unable to contribute anything to my blog since its first birthday…I am currently in the final stages of writing my 14,000 word dissertation, which is why I am particularly, tense. And to be honest, even if I’m six days before my 26th birthday I am in NO mood to celebrate.

The blog should be in operation by the end of November, or latest 1 December 2007. No, not 2008 but that depends on many factors. In the meantime be assured that I am still alive and have not fallen into a manhole. Yet…

Tuesday, August 28, 2007

I’M ONE YEAR OLD!!!





Right: Logo from my old site, which sadly celebrated no first birthday (sobs)
Can you believe it? I had to write something as I’ve been trying to figure out how to start wrapping up my MA dissertation and, to say the truth; blogging is really not top of the agenda right now. No offence. But I have a life don’t I?

And this week should be really exhausting. This Sunday I’ve been invited to be what they call a ‘living book’ in which I present myself as a “Disabled Book”. I don’t like to be put on a shelf so I hope people will want to ‘read’ me or get to know more about what it means to be disabled really. A lesson that a doctor examined me today needs to learn.

True, I catalogued the list of things that doctors thought were ‘wrong’ with me. And I was really flattered to a point when he stopped and in a solemn voice informed me…

“No wonder medical students are asked to examine you. You’re a case that is very rare…”

I was really comfortable yesterday being referred to, like the other ‘living books’ – the ‘Marxist book’, the ‘Gay Book’, etc. – that I really did not notice it until… let me say later than usual…

But what upset me most when I think about it is the fact that after talking about why I was there, he seemed so discouraged by my apparent ‘misfortunes’ that he assured me – rather unconvincingly… wait for it:

“Let’s hope one thing will turn out well this time…”

And in my half-alive state – given I’d been up late evening – I didn’t really notice what he was on about. But now I have the right to scream on this blogday…

“Whhhhaaaaaaaaaatttttt?!!?!!?”

But I guess that’s what you get if you read about the ‘sufferings’, ‘afflictions’ and God knows what other terms doctors are using these days to describe my medical state. And believe me, I am pissed off with myself as well. I should be quicker in the uptake. Well, it was 9am and I had been in the sun for some time before. But, seriously now, I think it’s very easy for words to become reality and language to lead us to think things about other people that aren’t the whole truth.

However, as the song goes… it’s words are all I have… to communicate what I feel on this blog. And this online diatribe of mine, beyond my expectations is ready to be potty trained. Hope it survives for years to come. On the other hand, hope I survive for years to come… you’ll hear from me in the coming days. Now let me have a well deserved rest, ok?

zzzzzzz.....

Monday, August 20, 2007

AFTER SHOCK

Left: a phoro of a thunder bolt striking somewhere in Romania. Courtesy of pinkfloyd from stock.xng


About two weeks ago, I had a terrible experience that seemed to have left its mark on me in ways I still have to figure out. As I was running a shower, I feel a jolt of electricity running through my back. I am taken aback as I didn’t really know what had happened. Apparently, a wire had given up on hanging on to the lights (it’s an unused house).

I made it alive mainly because I always use rubber shoes in the bath – as I’ve slipped once in the past and it was a long time before I could feel whole again. But here I was, dripping with water which was still running… struggling to avoid the wire and at the same time get out of there.

But what upset me was that all of a sudden I realised that everything I was or had been could be erased by a single spark of AC power. And a filling bath would have been a sure death trap for me. Perhaps my quick thinking arose out of the many times I had impairment-related problems. Such as when I cannot open a sealed bottle and use a spoon to let some air in the watertight container. Believe me, it has resolved many food crises in my lifetime.

But then, there are more deep questions. About what will come of me after I die. And what will people remember. Not that would be really important to me if I’m dead. And yet, on seeing so many features on local television on young people who have died, you start wondering.

Will I be remembered as always loving? A fighter? Or even a hero amongst the physically impaired? And even if there’s nothing really wrong with praising the dead, I fear that I cannot stand the hypocrisy sometimes. Of course I made mistakes. Of course I was bad. Of course … I am human.

As I write this, I am in the last stages of my degree. This experience has struck me with an important question about my life. About whom I want to be. On one hand I am driven by a passion to remove misinformation and barriers that have limited me and still do. But on the other hand, I wish to be doing what I like and love doing without having to justify myself to people. Or be disturbed in my daily life unless I require assistance of one form of another.

Perhaps I am fighting those who insist that disabled people ‘must prove’ their worth to be included in society. For, I know already, that this is an unfair double standard applied on the basis of ‘impairment’. Indeed, I we have proven that despite our exclusion, we want change. But aside from the collective struggle we have, I want to tell others that I don’t have to prove anything to the world to be in the world. And if it weren’t for the people who abuse the system, the process of change would be quicker.

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...

Sunday, June 24, 2007

CHILD’S PLAY!!!

Recently, my nephews Matthew (who is 4 years old) and Chris (just 18 months old) came for a short visit in Malta. The experience was a positive one because it brought about aspects of myself that I rarely see. A good side of me of course – my inner child. Before saying that this should come naturally to me … given that I’m an ‘eternal child’, I can assure you that that’s a myth. But that deserves another post altogether …

This post is really about the resourcefulness of children in new situations… and how an adaptive device can turn into a lethal weapon...

Two examples:

Four-year-old nephew Matthew decided that my walking stick was a shotgun. Whilst I don’t condone any form of violence and aggression… the game was simple. He practiced target practice. And the target… me of course! I’m lucky to be alive after that but I managed to disarm the little bandit.

Well, the second instance involves my office chair, which I like to use indoors. My nephews were literally fighting to hitch a ride on it across the room. Obviously, at the time I was sitting elsewhere and not crawling on the floor…

And these demonstrate that it’s not true that kids won’t relate to disabled people. And whilst my eighteen-month-old nephew Chris still eyes me with suspicion when on my wheelchair, I think I have bonded well with Matthew. He does make fun of me, yes, but so far he has never mentioned my non-walking lifestyle. Yet.

I know that my nephews know that I’m somewhat different from my other brothers and sister. But the thing is … he doesn’t make it a point to treat me any differently. For Matthew, especially, I think that having a disabled uncle is not such a big deal. But I know that there will be a point in the future when one of them will ask about it.

So when one of them approaches me and asks:

”Why can’t you walk?”

I hope to be prepared with an answer. Without shame or fear that my nephew will suddenly become afraid of me … besides, at least he’d ask me for an answer…

And yes, until the next time they’ll be coming, I’ll be missing them a lot!!!

Saturday, June 16, 2007

TURNING BACK TIME

Left: Photo of a clock with red hour and minute hands. The sky is reflected in the clock's face. Picture by Didi90 from StockXpert.

I was sick with a persistent fever the past three days … so I had no energy to think about anything, including my studies (!) It felt like I was dying. Really … But this post is not about uncovering the mysteries behind the fever, and it’s certainly not a post (you might find elsewhere) that usually ends with a message along the lines of:

“Thank God you’re healthy (etc. etc.)”

For it’s not my intention to push away some of my unhealthy readers. And yet, as I write this I remember two newspaper articles I recently read on a local newspaper which implicitly or explicitly reinforced the idea that being impaired is a very sad state of affairs (like a disease) and you should do whatever it takes to become ‘normal’ or get better ...

The stories were about two disabled people with different backgrounds. A woman who acquired her mobility impairment after a disease and another who had it from birth. Although the time they got their impairments varied, they were quoted as saying that all they wanted was to be ‘normal’… which is really bad news for me as I have given up on trying to be ‘normal’ a long time ago.

This is not saying that sometimes I don’t take a nostalgic trip back to when, with my mobility impairment, I could still manage to cover long distances and even rode a bike and would go places on two wheels … yes, those were great days but I cannot live in the past… or hope that some day I’ll walk again as I did before. Otherwise I’ll just lie on the sofa watching TV or on my computer (may be writing a post every hour).

I also had to make some important choices.

I chose to stop doing physio around 10 and get more of a life. After my arthritis kicked in when I was 18, I had to use a wheelchair but life had to go on. My impairment rarely disappointed me! It’s the people who insisted I be more ‘normal’ that crushed the view I had of myself as a child and as an adult. It was this which was my real enemy. And the unfairness of it all is that by accepting that ‘normality’ or as it is understood by people as being:

“The ability to walk, speak, hear, see, think and reason”

Is a better life (or an ideal we should strive for), might force people with similar impairments to hate their life or even themselves. I know I did. And whilst the definition above is very generous to non-disabled people, it is largely based on prejudice which judges our impaired bodies as inferior, if not worthless.

This is what is called ‘internalised oppression’ and it may be one of the toughest form of oppressions because it is self-directed. Indeed, impairment is always described in tragic and negative terms and it is accepted by many (including some people who have impairments themselves) that having a child with no impairments is better than having one who has an impairment.

And whilst it doesn’t really make me feel better about myself, if you think about it it’s not different from saying that having a boy is better than having a girl. The only difference is that people are ready to sympathise with arguments against giving birth to a baby with impairments because they think that we’ll always be less than others whilst the idea fills people with fear and horrible images for the future. A future they think they can change by controlling a physical feature.

And what about my disabled existence?

We cannot turn back to a place where we think everything was perfect, or to a time when we think things will be perfect. If I believed for one minute like some do, that if I got to walk I’d be the happiest man on Earth, than I’ll never be happy with myself because there will always be something else that bothers me. Despite my choice to stop physio aimed at straightening me a bit, I don’t regret it. But it might not be a good choice for everyone of course I’m just saying it was for me.

Sometimes it’s not us who need to change but it is the world we live in that needs to do the changing. I am not saying that I’m perfect or even always right (though I sometimes want to think so) … I’m saying that it’s not always right that we should sacrifice ourselves to reach the impossible dram of some ‘normality’. For if we did that, we’ll be just accepting that we are faulty and inferior human beings because we have impairments. Then life becomes once again a desperate attempt to recapture a time in our past, or to hunt down a future which will never be. Or arrest a past that never was.

It’s not our impairments who make us lonely or excluded. It’s not our impairments which make us unhappy and depressed. And no, it’s not our impairments which make us happy and cheerful either. It’s who we are. The real tragedy is if we believe that if our impairments went away we’ll be better off.

Tuesday, June 12, 2007

ONE MILLION SIGNATURES

If you are a EU citizen, you can help too!

SUPPORTING THE RIGHTS OF DISABLED PEOPLE IN EUROPE

The Maltese Council of Disabled Persons (McoDP) urges disabled people in Malta and their families to back up the European Disability Forum’s campaign to collect One Million Signatures to stop discrimination against disabled people in the European Union in all sectors of life in European society.

You can easily make your contribution by accessing the link:

http://www.1million4disability.eu/

We encourage all disabled and non-disabled people in Malta to support our rights as citizens of Europe.

Gordon C. Cardona
PRESIDENT
Maltese Council of Disabled Persons (McoDP)

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BLOG SCRIPTUM

Although I like to keep my role as a disability activist apart from my blog writing, I can't simply avoid passing this on. So, here's something from our organisation - the Maltese Council of Disabled Persons (MCoDP). Yes, I'm also the president... eh!

Sunday, June 10, 2007

THE SHAPE OF FEAR

I can’t say that I haven’t had my fair share of fears as I grew up. There were terrible monsters and ‘creatures’ out there to get me when I was asleep. I would like to think that I have outgrown most of these fears now and that I don’t need to hold my furry soft toy for me to sleep...

Left: cartoon of an odd looking ball with fangs and an open mouth. Courtesy of Jangeltun from StockXpert


Yet, these monsters that we are made to fear may still haunt us. Or rather what they represent to us that are the stuff of fear … it’s not that we would have a problem with a goblin visiting us or even an alien coming to say ‘hi!’ that gives us sleepless nights but the things that they might do to us that sends shivers down our spine ... after all, they could Torture us or even kill us, can’t they

But then again, what about the ‘monsters’ we are made to fear? Aren’t they almost always physically different, than the rest? Or even have different ways of living their life? Indeed, excepting for modern stories like Shrek, the ugly and ‘deformed’ (how I hate that word), is synonymous with evil and with curses. And it doesn’t take a lot of logic, as a boy, to think you’re also some kind of odd ‘creature’… well, your legs that only bend at approx. 90 degrees and well your hands not exactly straight … you start wondering… perhaps… I am sinister after all… The fear I had wasn’t s much as of the ‘monsters’ outside but the ‘monster’ that might be within me.

I was particularly struck by the tale of Rumpelstiltzkin – I don’t know why – perhaps it’s because it was one of the fairy tales that had the most colourful illustrations. The fact remained that there were things that physically I thought I had in common with the creature. I grew out of it eventually but I guess part of me was marked by the message that I was receiving implicitly through these tales. That good and evil are not simply based on actions but on physical appearance. That it’s not really what people say that matters but whether they are beautiful or smart.


The shape of fear is projected into people, who are to be feared to some extent. Whether it’s for what they represent, or who we think they are, fear takes a shape which distances us from who they really are. So, I become, as a well intentioned man once described me, ‘someone who us burdened by my cross’. I am tempted to ask the whereabouts of the cross, but I know he meant the fact that I was not fully mobile… and because I’m burdened by my ‘cross’, other people should think me brae… or even very brave. Yes, I have had my fair share of situations where my life was on the line. But I only did my best to go on because I knew that I didn’t have much choice.

After all, I always forget to bring my magic potions in emergencies. No, seriously, I don’t use magic powers any more… it got me in this mess of a world after all. There it goes again. My impish writing hand! But then, people have thought stranger things of me. But I’ll keep that for future posts…




Thursday, June 07, 2007

ON THE UNKNOWN

Yesterday I’ve been watching a documentary on cosmology or the ‘study of the universe’. Well, other than bringing back memories of when I was an avid astronomer, it also made me wonder about the vastness of the universe and how tiny, if not insignificant, our planet is. Indeed, the universe has been there for billions of years… and yet I wonder…

Left: A picture of me at about 10 years of age, with my telescope when I dabbled in astronomy.


It is at these times that I am struck by a combination of awe and fear. This emptiness that surrounds us, what about us? What about the grand designs we may have had in our life… it could disappear into nothingness. And there is where our fears reside. The great unknown that we must all face, or the eventuality of death. Nor others’ but our own.

Perhaps it’s the same feeling of awe and impending loss that many soldiers would feel during D-Day. Perhaps not. What is sure, that if we had to compare the brief history of humanity, it is quite absurd that we take ourselves so seriously. But then again, this world is all we have… and yet, again… I wonder how many before me have been driven to an early death.

Or else, they have been denied to be acknowledged as persons and robbed of their dignity just because they didn’t conform to the expectations of some ideal – however alluring. I do sometimes wonder what will become of me in a couple of years time. Whether I will be happy with how I lived my life. Or whether things will get better or worse.

Well, this life of ours will be always a step towards the unknown. Whether we like it or not will not change this fact a single bit. But there is a source of hope, and even if it’s simply the recognition that we’re doing our best, it may still get us through to tomorrow. The unknown.

Friday, June 01, 2007

EXTREME MAKEOVERS

I don't like watching programmes when people decide that they need to change something physically about themselves and feel that if they don't, their life would remain err... miserable. I'm not judging these people of course because there have been times when I did want to be taller, or simply walk straight - something I could never do.

But what if tomorrow I could rid myself of my mobility impairment? Well, I'd probably be running like mad over the place and that includes bumping into people... into things... etc. etc. Until I get really really exhausted. And sit on a chair.

And then when I want to go somewhere I'll probably be using a car... well, let's think about it... what about when I grow older? With all probability I'll be needing a wheelchair after all those years of running here and there and bumping into things.

So after fifty odd years of crazy commuting, I'll be back where I am now. And given that by the time I'll have forgotten probably all about my current situation, I would be very very sad for being unable to walk as much as I did when I was younger.

Nope, that looks like a full circle to me. Besides, the probability of me walking is indeed almost impossible whilst I'll have to learn to live a new life - being this way since birth! So, I'd rather be left like I am now without anyone coming up with any strange ideas about how to best 'fix' me. Unless of course you don't want to send me a million Euros... just kidding of course...

Monday, May 28, 2007

THIS IS THE TRUTH

How many times I have found myself saying this after someone has told me something about myself. Or else read an article. Or even watched a TV programmed. What truth?

Well, I cannot but say that I was a confused child, and was even more so when I started off hitting the age of 13. I won’t reveal anything that is private, secret or intimate here of course. I have my standards. But then, what am I all on about?

I have grown to believe that I am a unique person with things that no other person can give to the world. So far so good… but then if I should for a minute mention my impairment … well… hey presto…

“I You must be quite brave to go on living given your condition, not to mention you are unable to walk properly…”

Intended to make me feel good about myself, or:

“Your cross is an inspiration to all of us…”

Uttered by a member of the church. If only he knew what went through my mind… but a classic one is of course:

“WHAT A SWEET CHILD…” (Pat on the head)

How’s that for my self-esteem? How will I ever recover from such a persistent traumatic experience… can this ever stop? Nope. I guess.

But as every self-respecting disabled person can tell you, all this doesn’t help you a single bit when you’re out making friends. Or even making contact via Internet. I sometimes wonder whether it’s foolish of me to state in my profile that I’m a disabled person. I could be so many people. Yes, really.

But it’ll be fun for a while. Until I’ll have to return back to be myself. And then what… I do not know how to describe myself. I change so rapidly. Err… if I relied on others to make their minds up about who I am. I’ll blame my impairment of course. For confusing other people.

Tuesday, May 22, 2007

THE DISABLED SELF

As I progress with my writing on my MA, it seems that certain questions keep surfacing over and over again. My research topic has changed from my interest in the inclusive educational experience to a more radical (and controversial) – relationships and sexuality.

I must say that this area may be considered a more personal and private affair than others (pardon the pun). However, I am all too familiar with the many times that I felt excluded from the discourse of relationships and I found there are many reasons for that.

At the core of it all, however, remains the reluctance to admit that disabled people are sexual or even that they should be sexual. I have noted resources that chronicle the forced sterilization of disabled people, especially people with an intellectual impairment, who were considered a threat to public health and even social order.

We may not go that far in realizing that this trend of asexualisation of our experience is still with us today. I was very disappointed in the fact that the Ashley treatment was not met with outright condemnation and outrage. I have tried to answer why.

I think the fact that disabled people’s humanity is sometimes doubted or downright put into question plays a crucial role here. But apart from that, as who we are as disabled people is often shaped by our society – and even when we face the fact that much of what they say about us is based on myth and fantasy – it’s difficult to get out and admit that we have a rightful place here.

That right even extends to the matters of sexuality because it’s there where our humanity is perhaps more put into question. Questions such as:

Can we ever be responsible parents?

How are we going to cope in a relationship?

Disabled people should not bring more of their kind into the world.

\Are all examples of things people think and sometimes talk about in secret perhaps or openly in extreme right wing factions. And yet, our humanity includes within it a right to be identified as male or female, and by extension our reclamation of our sexual identity should be recognized as part of our struggle, together with our barriers to other areas of life.

Impairment is not saying that we are not sexual in any way. It’s not saying that we are, for all intents and purposes, eternal children. It is not saying that we do not need friends, companionships and why not, sex…

Impairment is saying that we are different, that we may do things in an original way, and that our normality is err ‘rare’. I have been single for as long as I remember. And it gets lonely sometimes. But I’d rather find someone who values me as a man rather than people who have treated me like a child or like I was some sort of guy with ‘special needs’. I am not that guy.

“I am who I am!” were the words God instructed Moses to tell the Israelites. As people are still being killed in the Holy Land, I can say that those words are still misunderstood and used for war or oppression. I am who I am. And my impairments have made me who I am today as well. Denying them would be denying all the experiences and values I have acquired through them.

However, forces that rob me of my individuality, my character and my sexuality have often disabled my identity. This is the time to ask myself who I am to what and myself I can do to be that man…

Monday, May 07, 2007

REMEMBERING...
THE CHILDREN OF THE HOLOCAUST

I have been interested in the history of the holocaust since my teenage years. Not because I have a morbid fascination with death or mass extermination, but because I wanted to understand why… why did it all happen? How and for what reason?

I know that it was the eugenic idea that some races were better than others… that some physical characteristics are more desirable… that some people should be sacrificed for the achievement of an ideal. An ideal of human perfection.

Yes, that’s all history… The extermination of people with impairments through the T-4 programmed … Jews, Gypsies, gays… political opponents of the NAZI party… yellow stars… ghettoes… swastikas and gas chambers. History.

Yet, the question still remains… why? And of all those human beings who have been silenced, why the children? And once again I am dumbstruck and cannot explain it away. Children stripped of their dignity, of their identities and killed en masse because they were not part of the ‘accepted’ kind.

Children used for experiments, for slave labor and for testing new methods of murder. And yet I shiver, as I know that in our liberal world children are still the victims. Children frozen in clinical settings for later use. Children aborted at will.

And yet, we are ready to argue that these are not persons because they cannot speak or talk or even defend themselves. They are not persons because they are not capable of talking about who they are. Not children because they might have an impairment. Not children because they are unwanted.

Yet, the silenced children of the holocaust are still here. They are killed daily in the streets of Israel, of Sudan, of wherever there is conflict … they were there during the Armenian genocides or during Pol Pot’s reign … I may forget where else. But they are also in our ‘civilized’ Europe and in our sterile hospital buildings.

But their destruction is not meaningless. Only why they were destroyed was. But then, we will never know who they were. Ever.

Thursday, May 03, 2007

MEMORIES

I recall a time when what I am doing now would have been unimportant or even irrelevant. Last week I met a woman who knew me as a 5-year-old boy as I attended her same school until I was nine or so. It was funny to realize that things would change so much from that time till today.

I am now doing lots of work, including school session and this week I had to attend a conference, which was later, broadcast on TV. Cool? Not really as I find it difficult to watch myself on TV. But it is clear that this time of unwritten posts is one in which I had time to think about life and of course do some good writing for my dissertation… But what is the purpose of it all?

I said that I might not have placed so much importance on what I’m doing now… and that’s really working to affirm my position as a society both because I believe that my impairment is part of who I am whatever they might say and that I sincerely believe that disability is not simply an outcome of my impairment.

And yet, as children we do not yet know why we are separated from each other. If not physically, then by means of language. A language that describes the ‘us’ as ‘deformed’, ‘abnormal’ and ‘special’. And ‘them’ as ‘healthy’, ‘normal’ and ‘mainstream’. And even if we are made to believe that we are not different from others, we are talked to and treated as if we were not really human.

But children do not distinguish until they are older. They do not create classes; define others in terms of acceptability or desirability. There is no word for that. I am indebted to language for teaching me about the world of course. But then, it has also been used in history to destroy rather than build bridges between people.

The memories of my first years at school are blurred but pleasant. I wonder why. Perhaps it was because I did not know what grown ups could get up to. Or because I did not really know the implications of who I was to others or how knowledge could change my world forever.

But then, is not the struggle against exclusion a wish to return to that state in which diversity was interesting, not threatening? To a state when everyone mattered and not those in power? I do not know. But they are memories that drives me on and perhaps will push me on till the end.

Thursday, April 19, 2007

TRANSFORMATIONS

I’ve made a lot of transitions in my life that are too personal to blog about. Right now, life has been occupied by my studies and work of course which means I find that I’ve got a little time for myself. However, I know that there are things that are part of my life that I sometimes wished were not part of it. And I’m speaking of my impairment if you haven’t got that by now.

I often wondered what my life would be like if things were not like they are now. Would I have had less tough experiences? Would people have liked me more? Would people like me more if I were not disabled? Would I have my own TV show and fan club?

Perhaps not the last one but I cannot deny that people might be reluctant to approach a wheelchair user without having thought about it twice or three times. And this is not just about me, it’s about them really. If I were to put it bluntly, do they think I am going to bite them? Or that I am harboring a contagious virus? Or even that by relating to me they risk of becoming like me?

I have gone a long way since I started out this blog. I underwent a series of transformations even before that. The greatest one, however, is one, which hasn’t happened before. This transformation does not involve changing myself or making myself more attractive to others. It will take a shift of culture and of society, which will not deny me the status I have as a human being.

And believe me, this is not simply about rights to employment or education. Not just those at least. It means being outside with people doing what other people do, expressing what I want like other people do and being free to do whatever other people are allowed to do without the risk of being patted on the head or talked down to.

That is my dear blog followers, the ultimate transformation. Then, perhaps, I would be saved a lot of embarrassment to waiters when they discover I can speak my mind.

Wednesday, April 11, 2007

MY X-FILE X-LIFE ...
(Left: Intro graphic of The X-Files series)

I have considered myself a fan of this science fiction series for most of my late teens but now I’m really not finding it much to my liking. Not that the many murders and unsolved cases do not intrigue or interest me but as I re-watch some of the episodes I had viewed as a young adult I am rather disappointed err in myself…

I should have seen it long time coming. But I couldn’t really put my finger on it. I mean how many times have wheelchair users got a bad reputation … a Hindu with no limbs who kills people by playing with their minds, a wheelchair user who kills people by telepathy, a blind girl who is the reincarnated soul of a man who kills those who have killed ‘him’ in the past, a janitor with learning disabilities who kills people for sports, some people with mental health issues on murderous frenzies, etc. etc. Those are some of the episodes I can recall right now.

I might have been more open to artistic licenses in the past but it’s always the one who is different, or who has an impairment, or of course aliens, mutants and whatever your creepy nightmares might conjure are there. But what makes me different from aliens or other imaginary beings is that my life is difficult enough as it is without people getting funny ideas about my sinister life.

And no I don’t have a sinister life if I may add. But often, as with the fascination people might have with aliens or the supernatural, disabled people are often examined and scrutinized from outside and judged from outside. And my impairment may become my blessing or my curse, depending on who is judging.

Yep, the truth was out there but if you’re searching for answers to the questions surrounding impairment, you won’t find them in The X-Files. But perhaps I should take it with a pinch of salt. But with many people only looking at our lives from such sources, I am afraid that they are still wondering about whether I am really an alien trying to blog way to world conquest.

Wednesday, March 14, 2007

ANGEL OF THE FLESH

I suppose that I need to explain that title a little bit. As I’ve been working on the last stage of my studies – my dissertation to be precise – I was unsure about what subject I should look into. And the more I read and thought about it, other more pressing concerns seemed to pop into my mind. The fact is that the ranting of the last posts have been more concerned with the past and the ways I dealt with my reality as a boy with a mobility impairment.


The fact is that at this stage of my life, my main preoccupation was one concerning more and
more the way other people saw me. More specifically, the way people my own age viewed me. And I guess, even though my early insecurities might have been resolved, at some point in my life there are questions that concern me as a disabled individual… questions such as:


Am I still regarded as a child or as dependent person?


Am I to content myself with being regarded as asexual, or as essentially having no sexual or emotional feelings?


Will there be ever a woman (in my case) that looks beyond what the culture and system implicitly or explicitly says about disabled people?


I know that these concerns are shared by many people with impairments but that doesn’t mean that they are not valid, unfounded or even isolating. So now my aim is to bring to the fore these concerns, and more important, the obstacles that we find in our societies that render it more difficult for me to express who I am even in places we as disabled people were traditionally excluded. Or the areas of love and intimacy…


A disabling cultural image I find in Maltese society is of course the idea that disabled people are ‘angels’ which implies that we are only uniform and all the same. More than that, such an image has implied that our relationships with others will have to remain detached or that we may share only with others within clearly set parameters. This view that we are ‘angels’ has changed of course but it still restricts the freedoms of some disabled people, perhaps most notably people with intellectual impairments.


I also know that structural changes will not dismantle these social and cultural assumptions about who I am, or about who we are. But I recognize that one of the greatest barriers to my inclusion is, I feel, the one that denies me my right to be sexual or to be a man, or for disabled women, to be women and even mothers.


The unveiling of the statue of a pregnant Alison Lapper in Trafalgar Square is, in my opinion, was a direct challenge to established norms of body image and beauty. And this is perhaps another issue that I have grappled with as I grew up… whether I was desirable or even remotely attractive. Although the case is still open in that department, the fact is that no role models exist on the media then and now for disabled people to emulate. Unless you want to follow in the footsteps of some witch, evil creature or bad guy in some Batman movie… although witches are now more popular it
seems (!)

Seriously now … talking about love and intimacy is not an easy topic. Indeed, it is a very personal issue to talk about. But to deny that these are important things in my life, or that I do not feel or think like a man, would be false and misleading. Treating me as asexual may be convenient or even nice but it’s also a form of alienation and dehumanization. For in truth, we’re not angels. Not even angels of the flesh….
Left: The sculpture of pregnant Alison Lapper, which was received with mixed reactions by the people as it challenged the notions of normality and desirability. Alison Lapper, who has no legs and no arms, has now given birth to a baby boy. For more on this, go to: http://www.bbc.co.uk/ouch/news/btn/vlucas_plinth4.shtml



Friday, March 09, 2007

WOMEN'S DAY – A DAY ON…
Left: The symbol of the planet Venus, often used to represent women

It’s become a habit of mine apparently to write about events after they happen or in this case, after an international day has passed. Indeed March 8 has been recognized as the international day for women since 1909 – at least officially…

But what can I write about women without falling into the trap of speaking of women as if they are just one group? For in truth, I have met many different kinds of women in the 25 years I have been alive. Indeed, if it hadn’t been for a woman I wouldn’t be here would I? So it’s perhaps surprising to note that in spite of the vital role women have to play in our society, they are still under-represented in leadership roles. Besides that the jobs they are given are underpaid in some countries – if not undervalued.

Of course, you may say that I am writing this to win some points with my friends, who for most part are women. Although that would be partly true, it’s also true that I’ve always felt that both men and women should grow up with a respect for each other and recognition of the importance of our diversity.

But then, I believe that we should also recognize the differences there are in this vast group who share the quality of being female. And that is that there is not ‘one’ women but many various people who are women. And perhaps I must also mention that it’s also a fact not often recognized that disabled women are also women. But because of the prejudice and assumptions still made in dealing with disabled people, the barriers and hurtful attitudes they come across are seldom mentioned.

There is also a history that is common with the struggle of women and disabled people. And that is one in which the environment and attitude has been constructed in such a way to cater for white, non-disabled, men who are of a certain age, strength and intelligence. Besides that, there are the stereotypes that rob both women and disabled people of their individuality or even their dignity. So I can only describe, not feel, what the experience of disabled women must be – not to mention the high risk they face of domestic violence and abuse… issues that may be sidelined on occasions by non-disabled women.

Here I take the occasion to wish belated greetings to every woman. the mothers, my sisters, my colleagues and many of my best friends …

For more info on issues facing disabled girls and women, visit:
http://www.infouse.com/disabilitydata/womendisability/7.php


For more info on women’s day, visit:
http://www.un.org/ecosocdev/geninfo/women/womday97.htm

Sunday, March 04, 2007

ACCESS DENIED

When this message flashes across your screen, it usually means that you’re in sort of trouble. And yet, in real life, I have faced this message many times in my life. The moment I fully understood what it meant for society to be impaired was the time I could answer the many doubts I had about some events of my life.

As I am currently doing sessions with schoolchildren, I am even more convinced of the values I believe in. That my impairment, and the different ways I do things, shouldn’t be a reason for my exclusion. We often underestimate children when we ‘grown-ups’ discuss issues. But I really wonder why it’s so easy for children to understand that I’m not that different from other people and yet I must prove it all over again to people who are older and err… more mature (?).

Only last week, I was greeted by an educated man who assisted me to find where I had to be. The first thing I am asked, of course, is not about my purpose there or a question about my work but the number one question I, and any other self-respecting disabled person, hates to be asked…

What do you suffer from?

I answered that I mostly suffer from exclusion and from being labelled by my impairment. Unsurprisingly, he looked at me blankly not realising that this is not his darn business! And in fact that it’s not anyone’s business strictly speaking…

Well, apparently, my life should be available for public consumption. On the other hand, my rights to participate in society and to access services is not an option I should be given. For all I want is really the choice to make my own decisions. That’s after all what I understand by independence.

Instead, I am notified that some things in my life are denied from me – not because I don’t need them but because other people think that having an impairment disqualifies me from even thinking I need them. So we are made to believe that it’s our problem, or that it’s something we should ‘accept’ (hate that word).

As the UN finished its convention on the rights of disabled people, I am perhaps more optimistic. Hopefully, this convention is ratified and its protocol adopted by many member countries – including Malta (my own). Perhaps we’ll be seeing ‘access denied’ less and less as time goes on. But I would be na├»ve to ignore the fact that we are still seen to be so ‘special’ and so ‘defective’ (in the same time) that many who have impairments are even denied life and access to proper education and employment – to name just a few.

Worse still, the possibilities of forming any intimate relationships is often forfeited by a society which still regards us as ‘inferior’ or as somehow ‘deviant’. I am encouraged by the children I have been talking to over the last week (I’m not counting but I’ve talked to over 400 children for sure so far). I am hopeful that what I have tried to explain through engaging them in a discussion will leave a mark on some of them at least.

The iron curtain that separated the communist world from the western world might have crumbled and old enmities resolved. But the barriers we face as disabled people will not fall that easily. It’s not just a matter of changing the physical environment or the ways we exchange information. That’s because we need to change the way we look at each other.

Right: Picture of what remains of the Berlin wall

Picture taken by Vincitrice from: http://www.sxc.hu/index.phtml.



For this to happen, as disabled people, we should embrace our differences and impairments as equally valid and significant. Non-disabled people, on their part, should be conscious of the fact that impairment is not something that concerns only us but involves every member of the human society. But more than that, it’s also a very subjective label that can change with time…

Left: UN emblem
click here to read the UN Convention

Saturday, February 24, 2007

FACING INNER DEMONS

PART 2

Last post I was talking about my concerns and experiences as a child who did not really recognize that I was different, or rather hated to admit it. Today I can say that I’ve moved on to accept who I am as a person and recognize my difference as a valid part of who I am. In spite of this, however, it sometimes happens that you are faced with a past image of yourself and wonder what that younger you was trying to say. And from my writing, when I was about 15 demonstrates that I sought to be like the rest of my friends – like any other kid I guess. Hidden within me, however, where doubts about whether my future would be like theirs since I knew that ‘other people’ regarded me rather differently than those close to me.

This hidden enemy, I believe, is the one I fought in my childhood and will continue to battle until the end. For the pain of being told off or ignored or avoided is somewhat greater than any physical pain I have ever endured. For the worst kind of thing that can ever happen to anyone is to be described as if he or she were some statistic or abstract character – as if this life was not real and as if we should not dream of the same things as others.

Caption: Photo used on my book. This younger me has obviously changed a lot (hopefully for the better)

The nightmares I had when I was in my teenage years did not just revolve around monsters, aliens or other scary constructs. My greatest fear, in fact, was that I was carted off and scrutinized as a mere object. That my friends would treat me like I was ‘special’ and not very human really. That my life would be judged by how I was perceived by others. And that whatever I thought or did mean nothing. Or at least it didn’t have much Importance.

I have faced these inner demons since I discovered the way people referred to me. In the way I am sometimes made to realize that I was not welcome. Or that my behavior was not what was generally expected of disabled people. These demons every person who is somewhat different from the mainstream of society must face, thoughts that cast doubt on your humanity, your validity and on your personhood.

There were times when I came to believe I was a problem, that I was a burden. That I need fixing. Unfortunately, these were not simply caused by figments of my imagination. They were things I heard in hospital wards, in public places, and even in places where everyone should be welcome. They were uttered in looks, in gestures, behind my back, or in my face. Willingly or not, some of these interpretations of who ‘I’’ was became part of me, and part of my past.

I may have chosen to avoid dealing with these subtle destructive agents. But I knew that I had to face them. Not because I was brave or resilient but because it was the only way to survive from social death. And it’s still a lifelong promise. To one day overcome the enemy within. For in truth, the seeds of these demons, or internalized oppression, may be defeated within but they will never truly die. As long as there is someone out there who still judges me, or others for that matter, by the way we might appear. By our impairments. By our differences.
END OF POST