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

Wednesday, January 30, 2008

CONFESSIONS OF A SHAPE SHIFTER


I have to confess something. It’s a secret that I’ve been holding back for a time now. It may change forever the way you view me, or my blog. It may cause you to question reality, the present and your assumptions about who I am. Here I go...


I am not really Gordon all the time. Indeed, I don’t live stuck to a computer screen fighting the keyboard. I am more than a blogger. You’ve guessed it, I am a super-hero at other times. Indeed, my power is that of transmutation. I change myself in people’s minds.


To my friends, I am perhaps funny, witty, smart (hopefully) and wise (pushing it a bit here) and a lot more.


To my family, I am a son, a brother and a relative. Yes, that’s when I’m not in my altered state of being. I am also a blogger then.


However, the transformation occurs when I get to places where nobody knows me… then the magic occurs … Of course, I am taking great risks in revealing my true identity here. However, I am so confident in my gifts of transmutation that even if I reveal to you my … let’s call them ‘’forms’ … you will not spot me. Not a chance…


v First, I like to transform myself to the ‘poor tragic cripple’ who is \’wheelchair bound’ and who looks forward to some cheering up with a cold ice cream. OK, it’s not really my favorite … Perhaps the next one is …


v I transform myself into the hero proper, who ‘survives’ life in spite of his impairments … I get people asking – how does he do it … I would kill myself if I was in his place!


v Then there’s the inspirer … I become a symbol of hope and encouragement for the many others who are suffering. I am an example of virtue and of sainthood. They ask when they see my manifestation … you think you’ve got problems, look at him!


v One time I even succeeded in transforming myself to a non-disabled person. So much so, that one kind person asked me are you really disabled? Alas, I have not been able to replicate that for a time now.


v Then, of course, people see me as no different than any other wheelchair user. If the person they know likes sport … then I have to like sport … if the person they know likes to go to practice table tennis … well I should too … got the picture. Eh, and I trick them to believe that being a wheelchair user I know that person he or she is referring to. That’s part of the illusion of course …


There are other forms I adopt. However, these forms suffice to explain how great my abilities are. It’s sometimes counterproductive to be honest. You get the attention, yes, the hero’s perks – fame, mention, and recognition – but then when you find that you are so ‘special’ … so heroic … that you realize that the world has not accounted for your existence.


Hence, you have to point out that your needs are like any others. That even if you are a superman, you need to get to that floor without using the stairs. And flying is not an option. That you want to work, even if you get tired by the end of the day. You need relationships – even if you’re regarded as a symbol to others. Indeed, to wrap it all up, it’s not that I chose to be a super-hero, or that I want to be a changing form in people’s minds. The Gordon that I know suits me just fine. Yes, impairments and all that. So, please.


To the person who told me I am an example to others. Get a life… and if you want a piece of advice here it is. For extra authority, I even put it in quotation marks (it works for academic papers):


“I’m just trying to get through the day … there’s no need to analyze, speculate, or label what I am doing just because you think you know who I am. Don’t judge a book by its cover; you’ve got to read it first to know what it’s about. And no, even if I tried turning into a book once, I didn’t quite succeed … …”


Back to the real life, now!

Sunday, January 27, 2008

GENECIDE


I do get rather mixed feelings when I watch one of those science programs on the Discovery channel where you have new scientific developments being described as 'life changing' for disabled people. Progress, it is claimed, that will give 'sight' to the blind, or even 'movement' to those who had paralysis. Don't get me wrong, I can understand how people who were once without impairments might feel about their new life with an impairment. And to be honest, my eye operation has opened me up again to my old habits of doodling and playing with visual images. However, at every point when I hear that science is m
aking assertions to the effect that it may 'cure' impairment, I fear that what it is actually saying is that if there was a choice, it would rather not have me living today.

Indeed, I fear that this scientific bias we find today has repercussions on the fate of millions of people who have impairments that can be detected before birth. As I read about the hailed genetic ‘breakthrough’ of the ‘autism’ gene, I was a bit concerned about the obvious implications. The genetic marker for autism, we are told, will introduce new treatments for this ‘condition’ which as almost unquestionably described as a tragic affliction. But wait a minute … does a genetic marker determine every aspect of a person with autism? And, on the other hand, is ‘autism’ and people living with it, something that terrible or something which devalues the person thus labelled?


However, more worrisome is that in light of so much misinformation existing about autism, many parents will take the easy way out. That is, elimination on detection. I’m not being alarmist here. In fact, when the gene responsible for Down syndrome was detected, whole generations of children with DS could be now destroyed. Such a trend persists and is now extended to others who are ‘diagnosed’ with other impairments. Unfortunately, unlike other atrocities committed against other ethnic minorities or groups, these mass murders on the basis of genetic characteristics is not recognised as genocide, or as it should be called ‘genecide’ – elimination on the basis of genetic markers. We should be reminded here of the horrific implications of what was believed to be a science, or ‘eugenics’.

Left: The NAZI swastika: symbol of Aryan superiority, oppression and death to millions who were killed because they were deemed ‘defective’, ‘inferior’ and ‘unworthy of life’.

I do not intend to end this post with a message of doom and gloom. I’m not suggesting that apocalypse is at hand. What I am saying is that if we deny that the elimination of people based purely on a genetic bias constitutes genocide, similar to that perpetrated on other human beings throughout history. However, what is more shocking perhaps is that we do not hear anyone openly and on a global level (such as in the UN world assembly) to condemn such practices. Or, at least, recognising that they are no less heinous than the atrocities committed in human history. This silence, to me, is acceptance that a life with impairment is not worth living.


POSTSCRIPT

As you can see, I have been busy during the weekend renovating my blog. I hope you like the changes I’ve made. I’d appreciate any feedback or comments so that I can further improve the blog. Yes, I am indulging in it as I need to take a break from work at least during the weekend…

Tell me …

Tell me the truth and I shall follow,

Give me the answer and I will stop asking.

Provide me with a sign so that I will know.

The truth is yours to find in the tomorrow.

If you stop asking, your life will be unbearable.

The signs are everywhere if your mind is open.

The dream of a better future. Of a world.

A world, where everyone can be oneself,

Can never be. For we live in others

And others live in us.

The love within is lost on those who close

Their minds to the touch of another life.

The ones who only judge the true, the good,

And the divine by the illusion of the mind.

Friday, January 25, 2008

Alone

I stood as days went by without a thought,

My dreams and passions I blindly sought.

No fear or worry about the past,

Or future that would be ahead of me cast.

No words of love and hate were there.

No vanity or shame I knew.

There was just me and the sea.

Me and the stars.

I was the world,

And the world was me.

No good or evil shook this paradise.

I never knew then.

I was alone. In the Now.

Tuesday, January 22, 2008

INFERNAL INSTITUTIONS


I haven’t been following much of what was happening in the world lately. So, it was to my horror that I read about the inhumane treatment children and teenagers are receiving at the Judge Rotenberg Center (JRC). It seems that no one really finds a problem with having children being administered shock therapy. And the claims made by the institution that this treatment is essential to ‘control’ these children’s behavior smacks of a thwarted sense of ethics. Of course, to make things worse, I read that a prankster called the JRC to order the staff to administer electric shocks to two teenagers. The staff, without questioning this order, proceeded to do as instructed.


It’s when I read about these things that I realize that disabled people are still valued less than other people in society. Not only are the treatments going on at JRC unethical and immoral but they are an outright breach of human rights. Had the children been without impairments, would have there been no protests? In addition, I am struck by the fact that if I hadn’t been searching the net, I would have never heard of the appalling treatment the children and young adults sent to JRC are receiving. I believe that support and proper assistance to the children’s families was the only option that should have been considered. I am reminded of Ashley X once again here.


I really wonder how we can call ourselves ‘civilized’ if our children are submitted to torture
because they have impairments we are not able to provide support for. But perhaps, we are really as ‘civilized’ as the ancient Romans or the ancient Spartans who left their ‘unfit’ offspring to die by drowning them in the Tiber or on the foothills of Sparta. Then that would explain a lot. However, the terrible news goes on in Europe as I read a report of another institution – this time in the Czech republic – where disabled children (and adults) are kept for their whole life in ‘caged beds’. Literally, like caged animals – they are fed and seldom receive human contact … and all this in the heart of the European Union! This treatment, at least on paper, is now illegal – but regardless it is still practiced as evidenced by BBC undercover reports.


I haven’t seen anything on Euronews regarding these events. If they had featured on the news they may have done for a short while. I don’t want to belittle other news stories. Undeniably, news stories about the present state of Pakistan or Iraq merit news coverage. But to gloss over these serious breaches of human rights within the EU – with preference to what the latest Hollywood star is doing or whatever – is to me a display of silent approval – or at least passive acceptance of such a conduct.


I tend to see myself as belonging to the human race. I’m not patriotic or allied to a particular culture as such. But it hurts to see others who call themselves ‘civil’ or ‘democratic’ when these crimes against our children continue unchallenged and in silence.

Sunday, January 20, 2008

RIGID FLUX


Things seem to be changing fast over here. Well, those who visit this site often will notice that I’ve changed my photo and details re my profile. OK, so I don’t wear a tie and look that serious in this one … in fact it can be said that it’s almost the anti-thesis of the other photo. But that doesn’t mean that the purpose of my blog has changed … only that I want to explore other possibilities over here.


Ironically, after I was writing about my new job, I am notified that I have got my MA. Although I can’t hide the fact that I’m happy (and relieved), it’s business as usual over here. Perhaps even more work. However, I am now thinking of starting my PhD once I get my official printed certificate in the coming months…


And perhaps these sudden changes in my life – witch I knew would happen make me think about other changes that have happened in the past. I can list many of these changes, some personal and some everyone knows about. However, sometimes it is surprising that when you are transformed you sometimes get to lose the company of those around you.

Photo: my first day of school – little, smart, and cute – until I realised the meaning of ‘school’ that is … well, then it was tears, and tantrums for a few days (or so I’m told). It was the first step into the adult world …

And I admit that it was hard, for instance, to realise that you lose ‘friends’ because you become a full time wheelchair user. Or that you may lose others because you lose your vision… and strange as it seems, you can even lose others when you regain your sight – at least in one eye. Of course, it would be false to say that I didn’t change myself during these transitions. Gradually, true – I’m not a werewolf after all – but noticeably.


However, it is also true that I made some good friends and true ones at that. I’ve changed the old ideas I had myself about whom disabled people were (closed as I was in a view of disability based on tragedy and inferiority). I’ve met all kinds of people, disabled or not, who proved to be true friends because they didn’t abandon me when they realised what ‘had happened to me’. My experience, I must say, wasn’t that bad. To put it this way, the fact that the people around me stick around in spite of the negative ideas that still exist about disability or disabled people is great.


Now I’ve also been able to reach out to old friends through the miracles of Facebook(cough!) but then I am somewhat unsure of those who I lost contact with since university for there is so much that has changed in my life. Ideas, beliefs, and values that are now surpassed. And I’ve also grown in many ways on the way I perceive reality and on what kind of future I want. Still, even if my body and mind has changed I’ve got to admit that there is part of me that has survived intact from the past. But that’s for another post …

Thursday, January 17, 2008

WAR OF THE WORDS


Is it 'disabled people' or 'persons with a disability'? This is one of the questions that I have struggled with before I got involved in the disability field. However, I have to make an important announcement.


OK, no need for that drum roll! The truth is that I've found a part-time job as 'research assistant' - which involves amongst others, research and public relations.Besides that, I hope to keep doing disability equality training and tackling disability issues as I did before. So that's one thing sorted out!


Sadly, despite any title/position/quality I may have or will have, I do get talked down to or even talked about as if I was never present in a room. It is happening less often, I admit, but I have the habit of remaining yours truly a 'wheelchair case' ... aah, with 'special needs' I forget ...
Yes, I admit that I've been lost in deep thought in my older posts. And therefore, this humour (yes, it should be funny) means that I'm in a better frame of mind. I admit that I'm realising that, after all, I will miss fulfilling my role as uncle but then I must go on with my life... until next time of course.


I have started off this post with a question really. And I need to answer it now. I guess that on looking back at my recent experiences of finding a job, being an uncle for my nephews' short visit, for instance, I can state that I still call myself a 'disabled' person. Not because the phrase itself is important but because it describes how I see my position in society.


After all, if I was a person 'with a disability', would not I who had the problem? And, at that, is not there no distinction between my biological reality and the social barriers I face in this term? Is it the fact that I have an impairment that creates most of my problems when in society? And I don't buy, with all due respect, the 'person first' thought behind 'person with a disability' ... In fact, when you add the words 'with a disability', I feel, you are actually emphasising that you are somehow 'not fully a person'.


Obviously, I've come a long way in my thought since the days I was content with being a person 'with special needs'. However, I believe that the term 'person with a disability' rather than freeing of us from being discriminated against, tends to suggest that we are the people with the problem. In other words, society has no fault and is fine as it is.
I recognise that it's often the case that there are translation issues that make it difficult to capture the political element inherent in the statement 'disabled people'. In fact, in Malta, I sometimes have to use the phrase 'person with a disability' when explaining 'disability' in Maltese, since we say "persuni b'dizabilita" since the alternative would effectively sound like you're saying "the disabled" in English.


Having said that, I think it's important not to forget that my position as a physically impaired person does not negate, in any way, my position of a student, worker, family member, uncle, and in the future that of lover, husband or father. However, it is a reality that the way society views me and organises itself will impact on the level of access I have to services, rights and choices which are at the basis of my independence. There's no way round it. It's not an issue of having a disability, but it's an issue of being disabled by society.


So it's rather disappointing that the UN has changed the name of the day formerly known as the day of 'disabled persons' to naming it the day of 'persons with a disability'. For it misses the point behind disability rights!

Friday, January 11, 2008

To be or not to be: that is the problem
(apologies to WilliamShakespeare)

I think I've reached a point in my life when I need to find some answers to important questions about my life. You may call it an existential crisis if you wish. Perhaps I've been here before... which means I'm turning around in circles...

Of course, the questions are not simple and straightforward. It's not the case of taking measures, assessing my skills or the like. It's about the value of my life as a person. To myself. And to others,... Who am I really?

Apparently, the answers should be on my profile but then is that really all there is? Have I tried too hard in fighting for the right to be identified as a human being that I forgot what being human actually means? Have I overcome the prejudices of many 'professional' people who have chosen to weigh my personality against what they perceive as the 'problem' of impairment?
As I said in countkless lectures to various students, disability is socially constructed... Indeed, perceptions of impairment have resulted in:

Artists to exploit our differences for comic, tragic or allegoric purposes...
Moralists to speculate about the ills of the world they see manifested through us...
Faith healers to pray for us and perhaps 'heal' us...
Scientists to emphasize our 'defects' and attempt to find a 'cure'...

Indeed, can I fully detach myself from these views of impairment that I have grown to learn and even believe. Views that seem to throw at me a single conclusion:

YOU ARE NOT FULLY HUMAN! NOT NORMAL! NOT GOOD! NOT BEAUTIFUL! NOT CAPABLE OF FINDING HAPPINESS!
And, of course, the 'disadvantage' of my 'problem' - I am told - are complimented by my character and 'determination to prevail'.

But do I want to be dishonest and claim that impairment has contributed nothing to my life. Has it really been 'bad news', a 'tragedy'? Have I regretted the moment I realised I was the same person people talked about on the papers when I was 9 or 10? On the other hand, can I be thought of as a person without referring to my impairment?

Can I be a mind without a body? And that is my dilemma... for how can I be myself without my body? But, on the other hand, why is my body sometimes only understood as 'faulty' at best, or 'useless' at worst? Do I have to choose between agreeing with the professionals who claim they know me more than I know myself as theyforce their own assumptions... and influence others in the process? Or can I just choose to be myself? But then, how much of what I have learned about myself is truly my own?

Tuesday, January 08, 2008

NOTHING SPECIAL


If I had to write my autobiography today, I would probably call it 'Nothing Special' or something along those lines. OK, it's not exactly the case that I am humble or anything. But, if I had the choice, I'd rather stand out for who I am rather than for what people think I am. Of course, this revelation came to me after I look back at the way I have resisted being labelled as 'special' ... a thing that I was rather ambivalent to when I was a pre-teen. I won't go there now but there are many reasons why I seem to have risen against any word that represents me, whether intentional or otherwise, as someone 'apart from others'.


My recent experience has proven time and time again that my impairments do NOT change who I am as a person. And let's face it, I have never known a life without impairment. What I never understood perhaps was why did the fact I was different bothered people more than it did me. And, of course, now that I have regained sight in my right eye (at least), I am aware that my body is in constant change... as is yours!But, then, should it really matter - at least when it comes to being valued - whether you have an impairment or not. Unfortunately, it does... try to imagine discovering that most buildings you could access with a wheelchair are fairly limited, that media often disregards its blind or deaf audiences, or that your opinion doesn't count much if you have an intellectual impairment


So it is sometimes refreshing to be in a position where you are made feel comfortable being yourself (impairment included) without the chains of misguided attitudes and decisions in the way. That is perhaps what I will miss most of my nephew's short visit. The feeling that you are not questioned or scrutinised as if you were some kind of fairy tale creature (not that I am really). And you also start to think about the possibilities if society worked in such a way when it relates to you. I've had my fair share of people who try to analyse my experience relating it to the fact I have an impairment. It's not always the fault of people but it is rather the fault of something higher. No, not God. But the way we think about society. Yes, even our values placed on what is perceived as 'healthy', 'normal' and 'beautiful' are based on such a limited view of the world.


And no, I am well aware that I have my own pre-conceived notions about what is 'beautiful' (at least) ... so I am not free of biases and of ideas that naturally exclude certain people from falling in that category. I cannot call them 'ugly' either. What I'm trying to say, perhaps, is that inasmuch as I want to free myself of being perceived in terms of someone 'alien', I cannot escape the fact that I am - at least in terms of social status - 'lower' than other people my age and background.


And that is why, I am disabled today. I have always wanted to share the experiences of being in a relationship, and dreamed of having a family of my own in the future. I don't say this to invoke sympathy or that purple-eyed monster ( pity) but am just stating facts. It's difficult really to express this in simple language but it's like I am realising that I don't need to justify my existence, or try to explain to others why I'm nothing special. And that's not a negative thing to say. For I remain, like other members of the human race, someone searching for my purpose and doing the best to keep going. That's not heroic in my books. And neither is my life as a man once told me 'a cross that I have to carry' ... And even if I would have not achieved my dreams in life, or really equity with others, I can say that I have fought to dismantle the falsehoods that artificially separate me, and disabled people, from the rest of the world.

Wednesday, January 02, 2008

ETERNAL CHILDHOOD

I will not brag about the fact I survived another charity open season. I only wish to put it aside. For a time at least. I have to say that one of the things that I will surely miss is playing with my nephews as they only come over for the holidays (from abroad). I have particularly enjoyed playing with Matthew and I'll miss him very much until our next meeting. Anyone who spends time with children realises how much we have grown to take things for granted and how much we thrive on preconceived assumptions. Or rather that we risk of not thinking about what are socially upheld truths.

And no, it doesn't mean that I'm saying that everything is relative and that we should discard all that has social value. But we must be more careful about the implications of what we think. I have experienced the sharp end of such fabricated reality. Ironically, it is tied to the idea that I can never be an adult. Being treated like a child when you're a child is one thing, but being treated like a child when I am 26 is another matter. But, yes, it happens. And I've come to laugh it off really. Yet, sometimes it gets me. And, I've noticed, it particularly affects adults having an intellectual impairment. Just two days ago, in a fund raiser event, I heard a presenter describing intellectually disabled adults as 'being essentially children'.

Not that there's anything wrong with childhood - indeed, it is a beautiful time - but people move on ... our bodies grow and choices we want to make change too. And even adults, who for mainnstream society appear as 'afflicted' (not my words) with the most tragic of impairments, it is our lack of understanding and prejudice which is the greatest of afflictions. and disability for these individuals. True, it happens to many disabled people to be talked down to... So there... it does happen to all of us. But unfortunately, I've seen negative attitudes against people with an intellectual impairment amongst disabled people too which is worrying to be honest.

While I tried to get my mind off this charity business I also followed the news regarding the assassination of Benazir Bhutto. I will not go into any depth on the possible reasons, or even repercussions, of her assassination. However, I guess that her return to Pakistan might have resurrected the fanatical opponents of change. Or even those who opposed difference. For, to be totally honest, there have not been many women in top political positions - not even in Western politics... so having a woman in a social system that has generally favoured men can be, for some, the modern equivalent of heresy.

Of course, we can defend the old tradition which establishes rigid definitions of what is acceptable or not in society... on the other hand,we may allow individuals to express their differences within a supporting society. I'd opt for the last one. Bhutto was definitely a strong leader. However, I sometimes go back and reflect on how history might change if things were different. After all, I sometimes think about whether thingds would be different if I had been non-disabled.

How many leaders who had an impairment do you know? I only knew of Roosevelt really. (although we are told he tried to hide it as much as possible) But I was surprised when I started studying to discover Helen Keller as one of the greatest leaders of our times. Perceived as a threat even by the FBI. But I guess this returns us to the question of eternal childhood. The image I have been raised with of Helen Keller were of an extraordinary girl who 'bravely overcame' her impairments (see this for a glimpse into how children might see her). I knew nothing about her radical opinions on women's rights, civil rights but only of her childhood. I wonder why we are never shown this side of Helen Keller. Perhaps this image threatens the traditional image of disabled people?

And yet, I know that as I am seen in the streets or in public life, there will be those who will not see beyond what they have been taught to see. And that is tragic indeed. However, I wonnder what the reaction of a non-disabled stranger when faced with the task of asking me a question when in the company of my nephew... who will he ask the question to?