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

Friday, September 29, 2006

ISN’T HE CUTE?

I have done well for yesterday’s presentation. Perhaps I should rewrite that last sentence. As usual, I prepared what I had to say. As my luck would have it, I could tell them of a fresh experience that had happened to me just that same day to show them how my physical difference may bring out reactions in people I hardly knew. Yes, disability is a daily job!

My tale follows … (spooky music advised)

As I was being pushed by one of my friends, a lady stopped her and asked where a certain person’s office was located. Obviously, I would not be the one to be asked this information. Why you rightfully ask…
Apparently, disabled people are usually expected to be seen and not heard (especially when accompanied by someone else). But in any case, neither my friend nor myself knew where the person was stationed let alone that she even existed. At that point, I was sighted!

I could tell that she looked at me as she proceeded to tap me on my shoulder … and asked me in a motherly fashion… “Are you alright lovely?” I was caught unaware and must have given her a puzzled expression. It happens that to me sometimes when I’m lost for words. Later on, when my friend and me were at a safe distance from this lady, I burst out laughing.

Now back to the lecture room.

When I was describing how awkward this felt to my audience of students. Being called ‘lovely’ by a lady I barely knew I could hear someone exclaimed from the back, “he’s so cute!” She was obviously referring to moi, which makes me really wonder whether I actually got the message across!

My intention was obviously to highlight the fact that if I were a non-disabled 24 year old, this behavior in my regard would have been uncalled for or downright insulting. However, as I appeared to be ‘vulnerable’, perhaps tired, and thus docile, as I sat on my wheelchair people think that it’s something that I would appreciate. Not that I don’t like to be complemented, but I prefer it when it’s a sincere and honest remark.

I still can’t make out what to think of such a reaction by one of the students. But hopefully some of them got my point, but I suspect others still looked at me as if I was some curious mannequin. And despite the fact that I may appear ‘cute’, I
think what I am goes much deeper and beyond that.

Now off for another conference ...

Thursday, September 28, 2006

THE ORDINARY OF THE UNIQUE

I’ll soon be off for a presentation which I was invited to give. Now that winter is soon drawing in, the lecture season kicks off with me having to go round the island talking about what disabled people mean when we say that disability is a political issue. You’ll see more of that as I get into the routine as the days roll by.

But today I was struck by the fact that we are all unique as individual human beings. Not that it is anything new but if everyone is unique, then it follows that being ‘unique’ is not such a special thing. In fact, some even say that everyone is ‘special’. But I get stuck here. If we are all unique and special, what is so wonderful about these qualities?

And it’s not a matter of stating the obvious but it’s more of recognising that there is value in the ordinary experience of our uniqueness. Because even if uniqueness may be common, the experience that it captures cannot be further than being ‘ordinary’.

Can you imagine if you had not experienced something, be it good or bad? Or that you had never met a particular friend or relation? Or even considered going back that your parents would have never met? That last one is really taken from “Back to the Future” but the answer to all those may be simple.

We just are who we are because the situation and the choices we made have kept us alive till this day. And luckily for you, you’re reading this blog… but seriously, don’t you wonder how a person like you is irreplaceable and can only offer an insight into the human experience that no one else does.

And yet, some of us want to be like an actor or a hero they admire when the truth is that you are killing that uniqueness by trying to clone yourself into someone else. Not that I am totally out of that temptation but as far as I’m concerned, I try to follow example rather than lifestyle or personality. In truth, I still want to discover who I truly am.

As I try to interpret my experience and feeling of the world I live in, I realise how stupid I may have been when I thought I wasn’t good enough or like the others. Although such feelings return once in a while, the fact is that being unique is not just an ordinary fact of life but it also is something that links us all.

And when you love the unique qualities in a friend, you can also connect with the experience of knowing that there is value in both of you essentially because there is a mutual feeling of love and respect. People who see me and who think that they know me just because they have worked with a wheelchair user always miss the point. And the point is simply that my impairment, even if part of my unique experience, is but only a facet of who I am. That said, it is often the case that because people tend to like to simplify the world into good or bad, black and white, healthy and unhealthy, normal or ‘abnormal’, etc. they miss the opportunity to value the common humanity of our uniqueness.

Which in the end of the day means that anything or anyone that opens up the possibility of change is crushed and destroyed for the sake of conformity or uniformity. Which is a pity really because then we’ll really have stasis. And the only thing that stops to change or adapt simply dies. And if you believe in love, then you should recognise that it values the changing form of our uniqueness.

I hope this piece makes sense but it had to get out! Hear from me again...

Tuesday, September 26, 2006

REBEL WITH A CAUSE

I am just settling down after another day of new experiences. It’s sort of funny that you get to know yourself much better once you start talking to someone else. And that doesn’t include computers or any inanimate objects that may or may not talk back. In my case, my computer and mobile phone do talk back to me but that opens another story. And I really should get to my subject here!!!

Well, I have been quite cross yesterday when I was reading about a man in Italy who has a physical impairment pleading to be given the right to die.

Plea from muscular dystrophy victim to Italian president sparks debate in Italy



Anyway, I don’t like it when our lives are depicted as being some sort of endless tragedy of suffering and sadness. And I feel worse off because people do not ask themselves whether there may be other factors involved in this man’s wish to die. I mean I can find many things in my life that cause me great sadness such as:

ACCESS PROBLEMS

ATTITUDINAL BARRIERS

PREJUDICE

DISEMPOWERING LANGUAGE

But I’ll stop there. I admit there were also times when I thought about the possibility of ending it all.

But then I never actually did. Do you want to know why? Precisely because I realise that people assume my difference to be somewhat wrong and giving in to that belief would be their win not mine. If you think about it, this man is probably not getting emotional support or even choice in making decisions in his own life.

Yet that doesn’t mean that people with impairments hate their life and are living a sad and tragic existence. That argument would be good for utilitarianists who only seek what is best in economic terms. Choosing euthanasia against proper support and assistance, or of providing equal rights, may look as a cheaper solution but it depletes us from our humanity and is only short term. Unless of course you don’t want to rid yourself of other groups of people that are deemed ‘undesirables’ as I sometimes feel disabled people like myself are perceived.

I’m no hunk I admit but I’ve learned to love my body as it is. After all, I think that being a man takes more than simple physicality and that again is a contested fact. For I believe that it’s the person inside that needs to be reckoned with. That’s why I really shudder when I hear people talking of me as if I was some kind of strange and fascinating object. They may be genuinely interested, yes, but when they do not go beyond that I really want to grab my wheels and run!!

When I was discussing some issues, someone pointed out to me that I was a kind of rebel. And I guess I am in fact a kind of rebel. And even if that’s not all of what I am all about (obviously otherwise I’ll be writing gibberish)... I think that it captures large part of who I am.

My rebellion is not against impairment or other people but is perhaps against a far greater beast. And that beast we may call our tendency to judge, categorise and exclude people who are different from ourselves. People who we may label different things ranging from the ‘deviant’ to the ‘subnormal’.

But alas it’s always the same result isn’t it? More of the same, nothing new and dismal mediocrity. Would you really like a world where an order was imposed from the start?? A world of no different(s)? A world where everyone believed, spoke, talked, wrote, etc. etc. as you do?

Unless you’re a narcissist, the answer would be no. Then why would you want a world without people with impairments? Why is there a silent consent to euthanasia and abortion when it comes to our life as disabled people? Isn’t there anything to learn from each other?

Indeed, I rebelled and still rebel against the voices who try to make me into something that might appease them or make their life simpler by avoiding me completely. And this exclusion from recognising my worth as a man might be at the core of my rebellion.

I think that I vented that off. Now I think my keyboard deserves a break after some really bad finger assault!

Sunday, September 24, 2006

IN-DEPENDENCE

Before anyone corrects my heading, that’s the correct title of the blog. Why? Because I’ve come to realise how important technology has become in our lives. And I’m not talking here simply s a disabled person...

Let’s face it… we have become accustomed to having electricity and water straight from the tap or bottle. But what if we don’t have any one of those things? The answer is simple – many of us would be lost and have to think about their life all over again. Things they had taken for granted become luxury. Which puts everything into perspective really.

Tribes that still know where the water supply is and who can collect or grow their own food may be ‘primitive’ by our standards. But are they actually? What would you do in a forest if you were lost for a month, a year or more? Probably we would raise our hopes up and only prepare enough things and resources for some days because we know we will be rescued… Or really we hope that this will happen. And that is an ‘advanced’ reaction to the situation.

A ‘primitive’ reaction would be to take stock of the resources present and make the best of the supplies at hand. Shelter and other essentials would be on the top priority list. We need not mention that this reaction would literally mean survival and a new meaning to life.

I do not wish to judge either reactions as the former one would probably be my choice as I cannot delude myself into believing I can match the experience of people who have been living such a life. But what this shows is that we may be really kidding ourselves if we think we can speak of u being independent. Unless of course you can say with pride that:

I have built my own house, including fitting electric cables, water supply, etc.

I also built and manage the power station and water department.

I am in charge of agriculture and can produce my own food.

I can cook for me and my own family with my own products.

Need I add more? The truth is that we are all in some way or another dependent on others for our livelihoods. And if I were to be cheeky, is not expecting to have water run out of your tap or your waste disposed daily a ‘special need’? Or cheekier still, isn’t it funny that some people say they are the ‘breadwinners’ of the family when they don’t have any idea how to make bread, or by extension what it takes to raise animals and produce green products?

Aren’t we dependent on others on a daily basis then? So can someone please tell me why because I use a wheelchair and assistive technology, I am usually singled out as a dependent guy? When most of the people doing the labelling would be lost if they just had a fault in their cars. But on second thoughts, they could walk across the island on foot couldn’t they? I’m the one who has to slave my way on wheels am I?

Saturday, September 23, 2006

WRITER’S BLOCKED

This morning I woke up feeling rather good about myself and after having a shower in my accessible cubicle, I proceeded to check whether I could write something for the blog. As Thursday was the day we had to move back to our winter residence, I thought that I should give some time before I could settle down. But of course, given that I still don’t have my usual internet connection ready I realised that I had to make do with dialup… So things are pretty disordered over here and I should have about a week to deal with my old environment again. And really there’s nothing that pretty about my state of order. Right now.

And disorder isn’t only out there in my physical world... that’s because I realised more and more how I have felt rather let down by something I read. But first a little background.

When I was in my teens, I was particularly interested in the rise of the black civil rights movements in the us, whilst following with interest the development in gender inequalities. True, I might have known at the time but perhaps I was seeking an answer to the question of my own exclusion. What these movements had in common was that they opposed the tradition that upheld the white man as the centre of the universe. And of course, ‘man’ here refers to the male of the species only. I won’t pretend to have been in any way a feminist or spokesperson for black power, but I felt that the message of these social movements touched me in some way.

Although my family and friends (and some other people of course) treated me as any brother/friend/acquaintance, there was a problem when someone outside that circle met me. Admittedly, it was easy to make new friends as I’m usually good company (should put a disclaimer there) but when it came to people, especially from traditional backgrounds (i.e., Christian/medical/charity), things got rather ugly …

Things that would make it to the top five things I hated as a child:

1. Being talked down to as if I had been promoted four classes – ahead of my friends.

2. Being talked to as if I’m kind of a shadow to my friends, not unlike an imaginary friend...

3. Being showered with praise and flattery as if I had been awarded the Nobel Peace Prize.

4. Being told that I was a ‘special’ kid.

5. Being asked awkward questions about my 'condition' and personal life.

As I was saying, I felt that my reality was not quite like that of the other kids not because I was different but because people perceived me differently. The thing is these ways of viewing people with impairments persist and I am still embarrassed to have to say that I am at still at risk of receiving money to buy myself an ice cream cone.

What upset me however was the more I read about these social movements, the more I realise how ‘disability’ has been totally removed from their agenda. Indeed, in an article I link to above, not only was proof that one was non-disabled part of the lobby to gain equal civil rights but ‘disability’ in other social movements, remains intrinsically a personal problem. To illustrate:

1. Suffragettes (early feminists) did not want to be thrown in the same category of “lunatics, feeble-minded people, crippled, etc” as they argued that being a ‘woman’ was a ‘normal’ thing.

2. The justification for slavery and abolition of black civil rights was traditionally linked to the argument that blacks were intellectually ‘inferior’. This meant that one of the tasks was to disassociate oneself with disabled people.

This is quite a simple sketch of the arguments but you get the idea. Disability was not a political issue but it was indeed bad luck and reasonable cause to deny civil rights.

I now firmly believe that disability is a socio-political issue meaning that my impairment is not a tragedy that justifies my exclusion from the world. Indeed, give me access and what I require and you’ll see me get on with it. But when you are constantly categorised, analysed, scrutinised and largely misunderstood, you start asking yourself whether they are right or not after all. But in truth, when I find myself with friends I cherish and doing the things that I am good at, I realise that it’s not me who they are talking about. But people still scare themselves by saying the most awful of things. These I heard being said about myself and some of my friends:

- It’s a dull life being blind.

- It must be so sad being unable to hear.

- It’s terrible not being able to walk isn’t it?

- Those people cannot speak for themselves (referring to intellectually disabled people)

- He should be locked up somewhere (mental health system users)

All I want to say is that despite whom I really am what I have achieved, or what is to come; the fact remains I am still judged by my impairments. And it is in that I feel strongly attached to other people with impairments. Not because we are all similar or alike but rather because as far as society is concerned, we are all equally excluded.

To read more about the bias in social movement history visit:

DISABILITY AND THE SOCIAL MOVEMENT

Wednesday, September 20, 2006

A QUEST OF PASSION

The last two days have been rather intensive and exhaustive for me as I engaged in a conference and had to attend some meetings. I’m not about to talk about the content of these events but rather want to share with you some realisations that came to me in the past 24 hours.

When I speak of passion I’m not of course referring to any ‘passion’ that people assume I should go through as a person with impairments. I feel terrible when people think of me in terms of ‘suffering’ and tragedy. But needless to say, my passion is related to the experience of disability.

In fact, as I engaged into the debates and discussions I noted that this was not an issue that I simply had taken as a practical solution. The issue of being recognised as a person and as an individual was a personal matter. That said, being constantly denied that rightful position in life for a long time has meant that it’s also something that connects me with every disabled person on the planet. But I would go farther than that.

I have come to realise more strongly how my problems as a disabled person are not that different from that of other groups who suffer at the hands of society. We tend to think of ethnic or religious minorities, gays and lesbians, people coming from different races and so on as separate from us. But indeed, the common elements that bind us together are obvious and perhaps too upsetting for a general public to admit to. The institutions that we live in, the attitudes that we encounter and the way we are treated are all symptomatic of the failure of society to accept difference. And it is precisely this implicit or explicit exclusion that fuels my passion.

The passion to live, to be free from the chains of prejudice or misconception, the passion of being accepted on my own terms, and the passion of being whatever I wish to be. But of course, this passion fights constantly against a world that does not stop and think of its judgement or of its obligations.

I don’t mean to preach or anything here but I feel that I must pursue something more than ever before. I have hidden away from recognising the value of my differences, both in terms of physiology and ideology. Although I cannot say I have come to attain my life’s targets at present, what I can say is that I am hopeful in the future.

Not that I can forget that this world of ours is passing through periods of extremism and radical realities – be it from the rise of the far right, to the threat of terrorism and finally to the conflict of ideas... but that it may be for these same reasons the right time to express who I am inside because even if I may not be able to prevent my own death, it’s better to die in battle than in defeat.

I’m not talking of any real war and battle here but rather the inner struggle that is in each of us to discover who we really are and the passion that should truly motivate our life. Ultimately, this passion as I see it is tied to the attainment of our value as friends, lovers and as humans.

Passion is such a difficult think to describe and to me it extends to what I believe in and to those I love. That said, passion must co-exist with love in order for it to bear its fruits. For a passion robbed of love may quickly turn to a fanaticism or even false ideas that drive us to seek out and destroy what is different to us, including others we deem ‘inferior’ or ‘evil’. This dangerous turn of events is not without its consequences. Perhaps the greatest being the impoverishment of humanity and of our diversity.

Monday, September 18, 2006

KYRIE ELEISON: A LOVE POEM

I am posting a poem I wrote a long time ago today for a very special person. The ideas and feelings it explores sometimes return here and now – especially when I find myself alone after a long day of exertion. Don’t be misled by the Greek title meaning “God have mercy” as it’s strictly speaking not a religious poem. By the way, did I mention I am single? But enough of that hope you enjoy!

“KYRIE ELEISON”

I wonder at the night sky,

Lost in strange feeling.

I thought that I could die,

Until I sensed your essence,

In the midst of this desert.

Like a fortress I stood alone.

Wholly empty and trapped.

I do not know myself why or how,

But your voice fills me with life and joy.

It’s strange but it seems to me,

Your heart is noble and so pure.

I cannot see properly your features,

But I discern a quality,

Far beyond my comprehension.
For now it seems all is won.

I am confused and perplexed, yes.

For I have loved before. And lost so much...

It may come to pass and laugh I will at this verse.

But I dream of you, your beauty within.

Yet I cannot reveal my secret to you,

As in silence I cannot hurt no one,

My blazing love and untold longing.

A seemingly impossible love. But alas it is there!

I need to better know myself.

I do not like to be hidden,

For my heart does call,

For a life that is forbidden.

I know you will remain forever,

Distant and unknowable to me.

But I sense you are special.

And in you I feel love.

My night is never dark since you appeared,

And in you the universe resides. As it does in me.

And never should it come to call you mine,

For you cannot or never should be owned.

Inasmuch as the universe is uncontainable and free.

You are wonderful but mysterious.

You illuminate my night with the colours of the rainbow.

And in God I know this.

You stir my soul.

And fill me with happiness.

Even in my solitude,

I am complete,

And all is one.

Sunday, September 17, 2006

ON THE WILD SIDE

I was quite unsure what to write about today, but as my luck would have it I stumbled on some information regarding what are called ‘feral children’, or children brought up by animals and who usually are identified as such once they have the fortune (or misfortune) to be found by their own kind (that’s me and us).

Although I was familiar with the reality of these children, each time I read about their story, I wonder and question things that I had taken for granted, or as givens.

For starters, I am particularly amazed that some of these children are adopted by animals that we often fear or demonise, such as wolves and bears. Not only that, but these animals offer them a home and a sense of belonging – even if it is only as part of the wolf pack or the bear family (for instance). That said, the other option they could have chosen would be to kill or even eat them. This didn’t happen and it’s quite fascinating if you consider it.

But what really sets me thinking is that these children challenge the distinction we may wish to make between what we call ‘human’ and ‘non-human’. Because, at the end of the day, we are exposed to language, a value system, a culture, an identity and a sense of whom we are. But what if all this is not there? Or never was?

I was troubled with that question before because it’s is not that different from thinking about death. For like death, it forces us to place ourselves into thinking which involves things we cannot understand but only observe from a safe distance. That is why it might be upsetting for us to get to know of these children because their existence upsets our idea of who we think we are and the ‘pride’ (recognised or not) that we have of calling ourselves human.

Then again, I read many articles here and there on feral children but it’s sad to note that most of them take a clinical approach to the matter. As if what is being witnessed to is simply a specimen or an interesting object of research. And this is not just the fault of science but also of the media which also exploits not only feral children but anything that simply goes beyond the ‘ordinary’ or arouses public curiosity.

The fact is that even in our apparent tolerant culture, there is an inconsistency in what we understand as being human. The power of language in the way it shapes our identity is quite scary. Imagine being referred in terms of your medical condition or impairment. Does make you feel a little uneasy and more of an inanimate thing. But what are our alternatives to language?

Here I must admit that language and meaning have played a significant part of my life because without them I would feel lost. But perhaps this is what draws me to ask myself questions when I’m exposed to the reality of feral children. Or indeed that even if these children might appear so very different from me, the truth is that they are a reflection of who I am and who we are if stripped of our clothing, customs and social order. This is not to say that these children are either negative or inferior people as some moralists may be tempted to conclude.

Far from it, these children actually invite me to examine what it means to be myself and perhaps examine once again what is truly my purpose and mission here. That is to say not what others tell me to do or who I should be... But really what I am living for.

Strangely enough, the story of feral children gets repeated all over again with different types of people. Especially those who fall out of our view of being human. That is perhaps another reason why I have to ask myself what is right or not... Take this scenario:

After I rob a boy or girl from his/her group – usually by killing the adoptive family, I go on and try to eradicate the child’s past. I start using psychological terms that have no meaning to the child or words that are really meaningless sounds. And then, to add insult to injury, I declare myself as some kind of benefactor to the child because I am attempting to make him/her more acceptable and ‘normal’.

When we are faced by difference, we often wish to make it suit our world view. But what about the other? Do we ever consider that we have to recognise it in order to move forward? Those are some thoughts. But the ultimate questions, who are we if we did not know our name?

Would we have a soul?

Would we know we were individuals?

Would we know how to express what is inside?

Disturbing as it might be, the fact remains that we must be very careful when speaking in terms of absolute truths and generalisations about personhood. That I have learned myself because I have been so judged. But then aren’t we always judging and being judged? The point is where should we go to know ourselves?

I do not mean to condemn anyone here, but what I have been trying to say perhaps is that nobody has the exclusive right to define what is human.

TO READ SOME RESOURCES ON FERAL CHILDREN:

WIKIPEDIA ARTICLE ON FERAL CHILDREN

INTERVIEW WITH AUTHOR ON FERAL CHILDREN BOOK

INTERESTING DISCUSSION OF THE MEANING OF BEING HUMAN

Saturday, September 16, 2006

GOING HOME

It’s almost the end of another Saturday and I’m blogging again. Sorry for stating the obvious, but I realised just today how blogging is a strange phenomenon. Not only are my friends and family capable of reading this stuff but really anyone with the resources to access the internet and to have the luck of stumbling on this part of the blogosphere.

Today I am compelled to write about my search for home. A place that physically seems quite clearly defined … a building where you live and do the most mundane of tasks before going out to face a hostile and violent world … ok my neighbourhood is not that bad!


But the home I’m referring to is more a place that I feel I need to find, or a state in which I belong and can fully express who I am as a person. Naturally, I sometimes worry about things that are beyond my control. I have been to places where children cannot afford to buy adequate clothing and begged the streets (Turkey: 1988). And the fact that most of the injustice and suffering I’ve seen was being inflicted on children my own age, I questioned my position in the world. And to be honest, my experience of poverty was the stuff of nightmares.

I have even looked at the stars for answers before I realised that I had to search inside of me for that answer. But where is my home? I mean if I knew the answer I wanted be writing this… but I know what did not work for me.

Simply put, growing up with an impairment meant that I could be in society whilst in the same time feeling an ‘outsider’. Thus, I never felt really inclined to become a patriot, or even a religious fervent (Malta has a majority of Roman Catholic).

I could also have identified myself as some and of walking, talking medical marvel or closed myself to self-pity and receive false praise and artificial consolation for my ‘condition’. And not to forget the countless attempts or suggestions to get me fixed or ‘cured’ through divine intervention. If that was home for me, then home was hell!

That said, I was close to death in 1999 after experiencing a significant loss of blood after a kidney haemorrhage. My little kid is ok now (couldn’t resist that) but I have been left with a much greater resolve to find home. Although as my philosophy class should teach me, home is already where you are…

Yes, that point is true but it’s not easy getting to realise and believe that you are there. Especially when the world tries to put you down or change you for its own ends:

1. Charity fund-raising.

2. Medical research or even social work assignment.

3. Holy wheelchair man with great powers of foresight and wisdom.

4. Holy sufferer image of God. Help me or touch me and you’ll be saved…

The sad fact is that everyone knows that home cannot be reduced to some neat formula dictated by some code/law/ethics. Not that these do not have a value for me but what I’m saying is that if you live for the rules with your identity inflexible to changes, then if you experience like I did, the touch of the angel of death you will have to learn everything from scratch.

More painful still is when you start having feelings and emotions that any human being has and having those same human qualities analysed and reduced to data. And when that happens or if every action is determined in relation to how you appear to others, and then you not only lose the hope of finding home but must admit that life is not worth it.

Not because you are at fault or in any way ‘alien’ but because others think so. And do I need to spell it out… that is no H-O-M-E of mine!



POST SCRIPTUM

Your comments are appreciated. Leave your comments below or if you want to contact me directly:

send me an e-mail now!

Thursday, September 14, 2006

THE BEAUTY OF BEING NORMAL

Before I start today’s blog entry, I take this opportunity to thank my friend Michael and all other disabled and non-disabled friends who are helping to broaden the audience of this blog. But now back to blogginess …


There are only some issues that make me rather angry and get me passionate. One of those is when people tell me things like...

“Let’s face it, whatever you wish to believe you’re not ‘normal’ …”

I have struggled personally with my own view of ‘normality’ when I was a kid. I remember denouncing anything that tried to define me in terms other than my birth name. And one of those labels that I particularly disliked was the word ‘normal’. This is because, for all intents and purposes, to medical professionals and people who should know better, I was ‘abnormal’. My legs were different and although I developed arthritis only later, I deemed myself quite an active and smart kid.

Now, at the time I also despised the term ‘disabled’ as well because I thought that it signified that I lacked ability. But today, I have come to understand that this term reflects rather the way society excludes persons like me in the sense that it ‘disables’ or restricts our participation and choices in society. Moreover, ‘disability’ also reflects the negative attitude that I often face as a person having an impairment.

In other words, I have joined in the ranks of other disabled people who think that it is not my impairment that limits my opportunities but it is rather the way society is organised that disables me. You are now thinking… but sure great theory, but you can’t walk or see properly … well, you may be right there. But who has said that walking and seeing are what makes you ‘normal’?

Let’s be honest, would a ‘normal’ person glare at a computer screen reading this? A person living in the 19th century would have thought you were nuts… more so if he or she was illiterate… And who says that being able to walk is essentially a good thing?
The fact is that we often never consider that what we call ‘normality’ is limited to a particular person. This person is usually a male, heterosexual, having middle-class values, white and of course Christian and non-disabled. Anyone who also literally falls short of these standards may be consider, err…, ‘abnormal’. The reasons we have a ‘norm’ and the ‘normal’ words may be more due to the increasing number of assessment tests needed to fill our factories and work places in the past.
That is why to this day, our structures exclude the needs of women and disabled people alike. These people just wouldn’t be working anyway to a person living at the start of the industrial revolution, so why bother with flexible hours or maternity leaf and child care facilities? Or accessible facilities and environments? And what about our ‘normality’? If I travel to Japan, I wouldn’t have such an aching neck trying to speak to some of my non-disabled acquaintances and the people I meet. I would also get a better deal on accessible as most of the population is an aging one… but of course growing old is not normal is it?

Jokes apart, standardised tests are also often biased as they give high ranking to people who can afford to get an education. For more on this issue go to:

PROBLEMS WITH TESTS


The danger of talking about ‘normality’ is that it always assumes that there is such a thing as a ‘normal person’. But I haven’t met Mr Norm in the street so far. But he should be quite an ordinary and uninteresting person because if you think about it it’s our differences that make our world well, wonderful. And let’s not kid myself, we often do not think how much our talk of ‘normality;’ is terribly biased and socially based. Take reading for example. The inability to Read is regarded to be a disability, and in fact is one of the disabilities covered by the WHO or the World Health Organisation. In fact in this health article, the gravity of having a ‘reading disability’ is discussed:
READING DISABILITY HEALTH ARTICLE


You might also be surprised to know that even baldness was once considered a 'disability' by the WORLD HEALTH ORGANISATION (WHO) ... don't believe me? Then...

READ THE 1970s WHO CHARTER


But if we go back to the 19th century guy who is now with his jaw dropping as he sees you using your mouse or keyboard right now and wondering whether to call the minister or local exorcist… what do you think would he think of your ‘magic’ of reading. In truth, he would not regard reading magical as such but it would be rather strange for him to conceive of how a monitor works or in my case how a speech engine works... The truth is at the time when illiteracy was the ‘norm’; reading was only the tool of the elite ruling classes. People who couldn’t read or write were not only accepted but people we now ‘diagnose’ with dyslexia were non-existent. This is because, whether we like it or not, writing and reading are products of society.
In short, what is normal for me is being who I am. It was normal for me to have walking difficulties, now it’s normal for me to use a wheelchair. It’s also normal for me to use a screen reader to write and read.

My body may be different than yours, and I think it’s a good thing… but for many I’m the one who should be sorry for myself. Sad because I cannot climb stairs when I go some new place. Angry because I can’t read a printed book. Sobbing because people think my life’s shit… blah blah blah... But ask yourself:

Who build the stairs or designed the building?

Who invented print and forgot to provide alternative formats?

- Who decided my life was not worth it just because I just do things differently?

It’s surely not Mother Nature’s fault, and that’s why to misquote John Lennon… disability if you ask me...is all social construction! I think society must adapt to accommodate this difference within it. As for a long time it has denied that not every one is Mr Norm...
‘Nuff said!

Wednesday, September 13, 2006

ECNEREFFID

I hope that you weren’t scared off by the title of today’s blog. That’s because it will be quite a special blog, as I talk about some of my current preoccupations with the things ways are going.

Today was another day in which I end up after a day’s work asking myself what the heck I’m doing here? But the fact is that inasmuch as I hate to admit it, I’m bombarded by voices and on a lesser degree ‘images’ of what people expect of me as a disabled adult. And I mean in the world where I find myself surrounded by compassionate adults who are out there to give a helping hand to a poor ‘handicapped’ boy like me.

And although there are many more terms that I’ve been indirectly called by the media, the fact remains that this doesn’t help people understand that impairment is not my life. The media, unfortunately, often dismisses its responsibility in creating more and more people who are but mere cardboard characters of people with impairments. But they are the ones who get screened and air time, especially when Christmas is coming.

I know, I know, they all mean well. But I consider myself rather lucky than those people who cannot get it into their head that they cannot assume that because I cannot walk or see properly I have to be very sad indeed. That life is the tragic one.

Yet, if I think about it what would be of Gordon who is non-disabled… would he be involved in the things I’m currently working on or experienced diverse realities through my interaction with others?

I guess a series on my parallel universe brother would make good television (directors take note please) .. the fact remains that I am here as I am. And people who can’t understand that I have a life of my own and want to make my own choices are kidding themselves. And yet, it is painful to think that a bias inherent in some of our institutions would rather have it that we are prevented from existing in the first place.

Although disabled people are seldom considered when making changes in buildings or services, the greatest exclusion and the most clear one can be seen in the developing field of genetic engineering.

Clearly, those people who once took the Hippocratic Oath and vowing not to kill life are now taking the matters in their own hands by choosing what is or what is not worth saving. And of course, to prevent people who are apparently different.

I don’t want to be pessimistic about the outlook, but the return to the chase for a more ‘perfect’ world is still part and parcel of many attempts of pushing for genetic screening. This interesting article may give an idea of the beast that we may be dealing with:

http://www.boundless.org/2002_2003/features/a0000685.html

THE TRAGEDY

There are lots of things that bother me when I hear someone start off his or her sentence with:

‘”But people like you ..

Or questions that obviously set you apart or get you off guard:

- “What’s your condition?”

- “How do you occupy your time?”

- “Do you go for therapy/practice crafts?”
-

And being a famous person I am often asked:

“Do you know Ms. Y, she had condition J just like you.. And used to go for rehabilitation… do you go there too?”

And then I’m expected to keep dignified in face of such blunt assumptions. What is the tragedy then? The way I see it that oftentimes we are only given a chance to ‘live’ through other people’s eyes, thus denying our individuality and undermining the whole idea that we should aspire to have rights.

Unfortunately, religion also has a role to play in removing claims to my individuality. A feeling that grew stronger and stronger as I grew up in the community. I made a decision to leave. I’m not saying that institutional religion does not work but the idea that my life is some sort of vehicle for other’s salvation or that I’m sort of a sign from God to the world lets me down because:

1. It views me simply superficially, when religion should be looking within.


2. It does not put into question the structures that limit my participation but rather emphasizes my ‘weakness’ and ‘lesser status’.


3. Perhaps more seriously, it tends to place ‘disabled people’ into one neat category describing us as ‘candles of hope’, ‘angels’ or ‘messages’.

With all due respect, who decides whether my life is worth it? Who decides that my life is a sign or message.. What exactly are other people’s lives, readers of my life?

And to be honest, being called ‘instruments of God’ just because we happen to be disabled only makes me a means to an end. This is exactly what I got when reading of the sentimental account of a father who has a boy with learning disabilities called Shay:


http://www.keepingapace.com/blogarchives/culture/divine_plan.php


The account by the parent, however moving and touching, only renders his boy into an instrument to get out the ‘divine perfection’ in those around him. We are made to accept the fact that not only is Shay not an image of God’s perfection, but that he only serves a purpose for others.

And there’s no excuse in saying that the boy has a learning disability. I have friends who have intellectual impairments but they are all different and have their own characters. But from experience, I have passed through times when I realised that for some I’m just some sort of holy angel that is here for the ‘salvation’ of others.

I once remember being drawn into a crowd and cheered by an old lady who told me to ‘be brave!’ and to keep in high spirits. Why? Perhaps because I will have to face many more people who cannot get the point that I’m not a saintly sufferer on wheels..

OK, before I forget, the title of this blog is strange simply because you should reading it from the back. Try it and see what I’ve been on about all the time. But how many of you did discard that line as some sort of tragic spelling mistake? By the way, writing backwards or inverting regular words has been an interest, perhaps a strange interest, of mine when I was young. Yojne Or should that be enjoy!??!!

Monday, September 11, 2006

SEPTEMBER 11

Five years ago, I remember watching on TV the terrifying attacks on the Twin Towers and I remembered when I had visited them myself in 1994. Everyone has been shaken by the attack and the realities that these attacks open up are not just frightening but concern us all. I do not think that we often stop and think about how easily we can lose everything or deal with a crisis. But then, can we afford to stop and think too much?

There have been many reasons put forward why the September 11 attacks had to happen. Some have blamed Al Qaeda, Osama bin Laden, the Taliban, Islamic fundamentalism, Jihad, etc. etc.
But although the organisation of terrorism has indeed a key role to play in the recruitment of willing suicide bombers, the question is why do these people choose to become "martyrs" and for what purpose?

I think that one of the reasons is that when we create categories between what is and what is not valid, right or true we are necessarily making judgements on people and not simply concepts. Simply put, we cannot speak of "women" or "disabled people" without being entrapped into believing that "women" or "disabled people" (for instance) act in the same way.


The danger I see in current international politics is in the overuse or oversimplification of these categories or labels. Take "arabs" for instance, how many people know that Arabs are not necessarily Muslim. And if they are Arab Muslims we can find differences as varied as the Catholic Church and the Protestant church?

I feel that the other problem is that it is religious fundamentalists who make most noise and are covered by media because it, well, sells. But this is but a distortion of the far complex reality that cannot be reduced to argumentations based on 'bad' governments or 'good' governments. The point is whether the government is giving people the opportunity or the will to make their own choices, moral judgements for state assessment are only political ploys I'm afraid.

And no body mentions that when we are declaring a war on a particular country we are declaring death to children, and other members of the community that are not part of the issue. But then, it's far easy for us to speak from the comfort of our homes. The reality is that:

1. children are still dying of hunger.
2. AIDS and other diseases are still claiming lives in the majority world (ex. Africa)
3. resources are exploited by Western powers in the majority world
4. political motivation and economic gain are mutually influential

That said, I feel that the war on terrorism can only fail if there is not a sincere effort on the powers involved to look into global solutions to our problems. A good thing perhaps that emerged out of 9/11 was that we realised that we are not living in our own private worlds unaffected by what others do.

Thus, I worry when we speak of each other as people that are apparently not deserving of being called 'human' or of being given proper recognition just because we may be different. I felt it as a kid growing up with an impairment and also as an adult when in certain situations. Being labelled, put into a box, or even being judged just because my biological truth does not agree with you deem to be normal or acceptable is not only hurtful but dehumanising.

What if one day you will have to face the same reality, what then will you hate yourself because you have gone out of your standards for 'personhood'? And what does this relate to 9/11?

The relationship is simply that we must be very careful when speaking of 'terrorists' or even 'Islam' without acknowledging the context in which these realities emerge and how if we are taken out of our comfortable sofas into war torn or hunger stricken areas we would react. For if you think about it, we have a responsibility to others when we are denying those we deem 'unworthy' of living their life.

The tragedy of 9/11 is indeed a tragedy. But it would an even greater tragedy if we do not wake up to the fact that we can no longer ignore the connection there is between each one of us. And this is not simply a matter of naming and blaming.

Thursday, September 07, 2006

THE NAKED TRUTH: A POEM

I sometimes feel that poetry can say some things best. After a rather long tiring day, I could not get myself to rest but felt I had to get out this poem that was in me. And here I present it to you. Hopefully, by tomorrow I will have regained my strength. zzzz...

Enjoy:






"THE NAKED TRUTH"

I have known such sweet joy and peace,

When I could but be

Of words and language free.



The touch of a warm person,

The smell of uncultivated flowers,

The sight of a blue sky,

The sound of a silent voice,

The taste of an unconditioned love.


And I dare say I was a baby

Free from clothing, naked to the world

Unstamped, unlabelled, free of judgement.


A child of heaven,

In love with all there was to love,

And free to the God above.



But tender nature spoilt as things became words,

As clothes covered my now shameful parts,

As words restored an order that was not

And chained me to a falsity of coded love.



But then, I return to what was that love,

As I witness to my self, my body and my mind.

Free of what stood to define me, free of the slavery of clothing,

Free of the masquerades of lies.



I do not touch you, you tenderly touch my heart.

I don’t see you, but sense your gentle loving gaze.

I do not smell you but know that there is a forgotten bond,

We share in the taste of our love,

And in the melody of our quiet music..


there is a present, a now.

I want to love, and love I will.

Beyond the reasons of this verse I rebel for love is one.

That rules and regulations shuns

And renders our words to mere puns.


For you are here, I am here,

We are here. Love is here.

I just have to will to see it.


I must Distrust my senses or my inner voice,

To render noise into a silence

That stops all violence.

And erases meanings and words to rejoin

That naked babe in the contemplation of eternity,

When love just was. Now. Forever.

Wednesday, September 06, 2006

Special needs

With a great sense of duty and absolute bravery, today I undertake a favourite topic of the non-disabled community when talking about us. Indeed, following reading the very enlightening guide on how to make disabled friends written for kids, available at:


http://www.kidshealth.org/kid/feeling/friend/special_needs.html


Before I start, however, I want to come clean. As every disabled person knows, we do have very ‘special needs’. As poor unfortunate and tragic individuals, we are happy to be made to enjoy the little moments that make us more joyful and cheerful. For the benefit of our non-disabled contemporaries, here is my brief guide to some of our ‘special needs’ that sets us apart from the non-disabled people. Or as we might refer to them, the ‘non-specials’.

There are of course an endless number of these needs, but I’ve decided to shrink them down to some of the most important to us ‘special’ people.


1. GETTING AROUND.

This special need of ours encompasses a wide range of issues. Of course, non-disabled people seem very happy to stay at home watching the latest soap or series. But we have this need to go about our own business, going out with friends, and doing the things that are considerably important to us. One reason being is that this special need permits us to access other ‘special needs’, such as ‘special’ education, employment and leisure (or should that be therapy?)

As a wheelchair user, I do get comments and sometimes wonder when exerting this special need. Obviously, I am flattered by all the feedback I receive from the streets and from people I do not know. They need cheering up most of the time I see them, I wonder why. And no, a pat on the back or worse a pat on the head won’t make a ramp or lift magically appear. And please, I’m not planning to risk my life on the roads to get somewhere far – so make public transport accessible.

But I digress …



2. ACQUIRING INFORMATION

Before I became visually impaired, I took print for granted. Now, I have realised that I have discovered that I have this special need now. Non-disabled people do not seem to appreciate how information is important to us special people but I figure they might have developed some power to read minds. Basically, for those unfamiliar with what I’m on about, this special need ranges from being able to know what is on the news to surfing the net and reading books.

And to aid me in my attempt to do this I have assisting me... not a personal secretary (although I wouldn’t mind one)... but a screen reader or a software that converts electronic text into speech. Cool isn’t it? And I can’t forget that some of us who are deaf would need to have some form of sub-titling or real time sign language interpretation during broadcasts. Not only that, but some of us even require this information to be available in a simpler format for them to understand.


3. COMMUNICATION

What am I doing here? Communicating of course… But this is another of our special needs of course. Take those special people among us who use sign language... they have their own language if you don’t get that. And of course non-disabled do not need to communicate anything in particular, so that’s why communicators used by certain physically disabled people become ‘special’ tools for indeed a very touching gesture.

Underlying all these (and which should have been first) is the number 4 special need:

SOCIAL AND POLITICAL RIGHTS

Non-special people might want to have their rights taken away from them as they seem to take them for granted. But we special people have been denied basic rights and rights to have control over our own life for a long, long time. And our need is really a need to be regarded as:

Humans. The way some look upon us and the questions they ask makes me wonder whether we’re truly regarded as such. Listening to dialogues on us and them is a case in point.

Persons. In medical wards, especially, I get the impression we’re the top exhibit for a case study of junior doctors.

Citizens. I once asked a class of ‘carers’ and some of them told me that disabled people shouldn’t have the right to marry or have children. So much for breathing … do I need permission for that too?


If you consider yourself as needing needs one to four, you may be a special person too!!! Before you go off to register for benefits, I am out to disappoint you. As you can see, the needs that many non-disabled people call ‘special’ are really well ordinary… The only difference is that as a wheelchair user I have the luxury of using wheels instead of dragging my feet along everywhere. Moreover, I can close my eyes and relax listening to “War and Peace” if I wanted to – although sleeping there is high risk.

Don’t get me wrong, I have non-disabled and disabled friends. But think carefully when using words such as ‘special’ which sound nice on the surface but are really no different than calling me an alien, or not part of us (humans?).


To modify slightly the credo of the animals of “Animal Farm”, although we state that every person is unique and special, it seems that disabled people are ‘more special than others’. Which invariably means that we must be provided for separately in spite of the fact that our needs, in whatever means they are fulfilled, are the same as the person next to you (ignore this if you're on your own).


Off for my special lunch ...!

Tuesday, September 05, 2006

NOTHING IS LONELY

I am reading through the book by Douglas Adams “The Hitchhiker’s Guide to the Galaxy”. I have enjoyed the story and it does put into perspective many things that as human beings we take far too seriously. But then, part of the opening involves the destruction of planet Earth which opens up an important question. Or the one that asks whether what we have now or today will one day disappear or be forgotten. And on a far more personal note, this idea of becoming ‘nothing’ reminds me of the actuality of death – an event scheduled in our future.

I don’t mean to be negative or morbid here. The fact is as a child I was preoccupied by the question of death and was aware of my own mortality when I was told that my eldest brother David had died a month after I was born. The questions relating to who he was, and the fact that I had a brother I had never known, prompted me to question everything and everyone.

And even if I would joke about things, I knew that the possibility of becoming ‘nothing’ or just a trace was not merely a potential but it was a fact of life. There would be times when I was close to giving up on life, especially in my late teens, but the unknown that stood beyond life was a frightening. And as a kid who was not a foreigner to hospitals, I was also aware of the realities of disease and thus uncertainty.

All these memories and thoughts were triggered during my best friend’s birthday... which is really not a nice thing to think about on such an occasion. Or is it? If I look at my life right now, I know that I miss that something that I may call ‘companionship’. But no friendship or mate, I realized, can ever remove me from facing death. As the philosopher Jacques Derrida states in his work “The Gift of Death”, death is a trip we must take ourselves. Nobody can die in my place!

And even if we may wish to escape it, death will find us in the end. The fable recounting a merchant’s attempt to escape death called “The Appointment at Samarra” makes this point clear. Inasmuch as we may wish to avoid the issue, neither death chooses us or we choose death. It is something that must and will happen.

TO READ THE FABLE ABOUT THE APPOINTMENT IN SAMARRA:

http://www.k-state.edu/english/baker/english320/Maugham-AS.htm


But besides that deep thought, I still feel the need to be connected with others. And many of us, many of us in secret, wish that we had a significant other in our life to share in the experience. This loneliness that I personally feel sometimes is partly because I realize that we are unaware of who we are until someone points it out to us.

A POEM ON LONELINESS:

http://www.netpoets.com/poems/life/1113001.htm


The very idea of ‘reflection’ does not simply imply looking at something from a distance but it implies looking at it from another angle. And perhaps the point in my life when I feel lonely I the point I feel nothing. I don’t know whether this can be explained but it seems to me the possibility of a significant other offers the hope in something beyond me. Hence, a person who is eternal and capable of extending beyond me.

Of course, I may play with words as much as I can and people may be nodding off here. But as death is just a point in a continuum, so is nothing another point. And where does this lead me?

REMEMBERING MYSELF

I feel that the truth must be in fearing ‘nothing’, I am perhaps fearing being forgotten. Or rather, forgetting myself. Now I can try different things and describe myself in different ways but the identity society ascribes to me – first as a man and second as a disabled person – is problematic. But it remains present. I can only say that a consolation is that death may be terrifying and ugly but at least it does not discriminate.

We do not often talk about the reality of loneliness or the fear of our mortality, but we persist in repressing them. In so doing, we create divisions between ourselves that are based on differences that we think are negative or inconvenient. Thus, we speak of ‘mercy killing’, the tragedy of impairment, the global ‘problem’ of poverty, etc.

Yet, we fail to see each time that the problem may not be so much in the world or in us but in the way we relate to each other. As I type the last few paragraphs of this blog, I notice that the feeling that I started with originally have taken a life of their own. But putting these words in the context of the universe, what will they mean? Can words of love and poetry ever replace the words touch of another human being? Can they ever really describe the person named Gordon writing this? How much is it the product of my time and of myself? And more pressingly, will it change my world for the better? Or is it that what I seek is really already out there for me to embrace?

Sunday, September 03, 2006

CRIME AND PUNISHMENT?

I didn't get the time to write a blog yesterday mainly because I was caught up in other things ... This morning I woke up with feelings I thought overcome. But feelings sometimes catch up with us especially when I read and hear about:

- The list of murders in Iraq
The never ending Israeli-Palestinian conflict
The post-recovery of Lebanon

Read more about these at:
http://news.bbc.co.uk/1/hi/world/middle_east/default.stm

Besides these events mainly staged in the Middle East, there are things that anger me over here as well. As the title suggests, I am thinking of crime and punishment. Although I am not referring to the Dostoevsky novel (still need to read that), I feel that some of us are not necessarily convicted legally, but are nevertheless punished for being who we are. Let me elaborate...


I have always grown up with other kids, who were non-disabled, and essentially believed that I could attain the same things as all my other friends did. But when I started studying and slowly entering into the public sphere, I noticed that this was not that easy. Aside from the prejudice people have against people with impairments (especially those that cannot be hidden away like mine) - you get the social exclusion as a bonus that helps to enforce these prejudices.
As a child I didn't use a wheelchair but still had a mobility impairment and looked different from my other peers. And at the time I did notice that people talked to me differently than they did the others. And I'm talking about people I didn't know here of course. But if that was the only problem, it would be alright (well sort of). But the fact is our structures do not help me now as a visually impaired wheelchair user to get around as much as I'd like.

Things that could and should change include:

1. Public transport (currently inaccessible)

2. Buildings (unless I can find a way to fly over some steps)

3. Information and communication services (not many bodies believe that disabled people are capable of making their own choices and living independently)

4. More resources polled into personal assistant schemes (these will help many disabled people really gain more independence - forget investing in miracle cures or aggressive rehabilitation practice)



As you can tell, not being able to go where I want and when I want is sort of house arrest or being given restriction to go places. And the crime? Being different ... or here having an impairment.

I still dream of one day settling down with the woman I love and someday having children. And one reason for starting this blog was to explore what others think of disability and impairment ... or actually to gauge into what I think or feel about many things. But indeed, I do have aspirations of someday becoming a husband and a father. And I believe, with proper support, I will get there. But then why do people still regard people with impairments with pity verging on mistrust?


With all the good intentions some people treat me either as a child, or else pity me, or well try to convince me to get 'fixed', or to pray to be 'cured', etc. etc. But I think that the problem is not me but them. Yet, again, these stereotypes wouldn't matter that much if they did not impact negatively:


- Education

- Employment

Future relationships

Socio-political rights

- Access to services

- Access to buildings

- Access to information and communications


I took these things for granted when I could manage more distances on foot. But believe me, once you look at the list below you realize that you've got a branding that might not make you one of the top ten wanted people on the FBI list but it sure makes you less of a citizen, or worse, less of a human being.


EUGENICS AND THE ULTIMATE SOLUTION




Ok, I started off Sunday with a gloomy outlook. But here I'll disappoint people again. I've been reading an article on the rise of the eugenic movement in the 1920s in Europe and the US and it makes chilling reading. Of course, you might say, the Nazi genocide started with an irrational Nazism spearheaded by the fanatic Adolph Hitler... wrong!


The seeds of eugenics actually were sown in the US and Europe with the adoption of the theory of evolution as a basis of the social policy ... to eradicate people deemed 'defectives', criminals, the 'feeble minded', people who were 'epileptics', having 'abnormalities', etc. In short all those who did not fit the ideal of a decent white middle class European or American citizen. Not only were these 'defectives' deemed a threat to the 'purity' of the race but they were also systematically sterilized in many US states and European countries. This gloomy history might be, well, past history, but the fact is that these sterilization laws resulted in the final solution. Or the clinical elimination of people that were considered to be not good for the population. The ultimate solution of the holocaust actually started with the T-4 programmed of euthanasia which gave Nazi scientists experimental material to improve on their killing tactics. The 'inferior' people could then be slaughtered more efficiently ... and the first to go were people with impairments.

More on the T-4 programme:

http://www.bbc.co.uk/ouch/closeup/holocaust/faq.shtml



Although that bit of history is sort of over, the laws that limit the rights of disabled people in the US were never removed from the constitution. And one law in particular has never been overturned... that of sterilization.


This not so known side of America is scary because apart from these laws, despite having the American with Disabilities Act, a state, parent or guardian may still call upon the law to bar a disabled person from having children, marrying, or even adopting.

To read more about this embedded discrimination go to:


http://www.independentliving.org/docs1/pfeiffe1.html



And to be honest, with people stating that 'disability' could be removed through genetic technology is not saying anything different than what the eugenic movement was saying in the early turn of the 20th century. I cite the views expressed relatively recently by Hughes:

“While the biological factors in most forms of inequality are probably slight, genetic technology does promise to create a more equal society in a very basic way: by eliminating congenital sources of illness and disability that create the most intractable forms of inequality in society. We can go to great lengths to give the ill and disabled full access to society, but their disabilities place basic limits on how equal their social participation and power can be. Our ability to ameliorate these sources of congenital inequality may even impose obligations on us to do so, at least for those who are cognitively impaired and incompetent.” (cf. HUGHES 1996, PP. 94-101)
Taken from:

http://www.changesurfer.com/Hlth/Genetech.html


But then such views of doctors and people who are considered competent to make decisions about our life are not that uncommon. Believe me, it's the primary reason why I've entered into disability activism. Because I feel that I have a life like anybody else, yet the voices that I constantly hear and are exposed to persist in distorting the facts about my life. And please, do not think that genetic engineering holds the promise of a 'cure' or a 'solution' in the long term. The same reasoning led Nazism to commit the most grievous offences against humanity. Yet, unborn children with impairments now have a higher risk of being aborted or killed shortly at birth because many believe our life is not worth living.

Which leads me again to question the very nature of crime and punishment. Because after all, considering everything, I do believe that I can exert my will like anybody else. But if the structures that are present prevent me from doing so, I must work to change them. It is for that reason that I feel I'm here after all.


I'll take two deep breaths and calm down. It was quite an intense morning. And I need some air... if I find the ramp... just kidding... This ends my Sunday sermon :) Sorry for the long blog!!!

Friday, September 01, 2006

IT'S A MIRACLE!

Of course, today was an unusual day because I had to go for a regular checkup at the hospital. I thought I would report my remarkable adventure here but what has happened is nothing short of a miracle.

I didn't get drawn into conversations discussing my 'difficulties' or my pain at being physically and visually impaired. The staff at the radiology department where I had my x-ray taken were very nice and let me guide them in the way they should help me. And no old lady offered me sweets or money to buy myself something good.

And to top it all, I have been given a clean bill of health which means I'm ready for my eye operation - which is still hanging in the distance.

WEEKEND BLUES

At midnight today, another weekend will commence. And it's somewhat an occasion I tend to feel blue all over. The nature of my work does slow down in summer and because over here (as in many other EU states), accessibility is still a problem I tend to have a 80 percent chance of staying in.

More time to read and study perhaps, who knows? I'm satisfied today because I've fixed the things in this blog that bugged me. Ah! It's not very pleasant being a perfectionist sometimes. And I'm not like that all the time. Otherwise I wouldn't finish my sentences.