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

Saturday, February 24, 2007

FACING INNER DEMONS

PART 2

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

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

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

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

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

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

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

Thursday, February 22, 2007

FACING INNER DEMONS

PART 1

Sometimes it’s strange how the past comes beck to haunt you and opens up memories and thoughts you thought lost. Since regaining my vision, many memories and things I did not remember even existed were once again into my awareness.

But the fact is that although we must bury the past in order to move on, emotions might lead us to wander into places that we had forsaken. I was reading a short book I wrote whilst in my early teens. Although I knew that there was injustice in the world, my own views about disabled people were still not developed.

Ironically, amongst the short essays I wrote, the first one dealt with ‘abnormality’ and I was already questioning whether people, I then called ‘handicapped’, were really ‘abnormal’ considering the diversity within humanity. Little did I know that such labels and certain ideas associated with such constructs applied to me. But I would deny that I was different from any other boy my age. An excerpt from chapter 1 illustrates some of my early ideas:

((LEFT) 'LIVING & SOCIETY' COVERS

““Here lies a very deep philosophical question: What is normality? This question might be answered by saying in the universe, under every form everything has its degree of singularity and abnormality. In the case of handicaps, we tag them as being with special needs but in my absolute opinion, if they are really normal to us why then grows the need to tag them.” (Living and Society, p. 1)

I was obviously unaware of the significance of what I was writing and – in spite of some words I would not use today – the passage reflects some of my preoccupations that did haunt me when I was younger. The fear was of course being denied my individuality, or even my status of being a human being.

The fears I had and never shared with my friends were ones that dealt with a fear of being singled out because of my impairment. And as often happens, these views I had learned about people who I considered outside of me, whom I talked about before were really ideas people might have had about myself. And yet, I never admitted the fact that I was different because this implied I was somewhat undeserving of being with others of my own age.

Monday, February 19, 2007

ONLINE PETITION ON THE 'ASHLEY TREATMENT'

Following my blog entry on Ashley, I have received a link to an online petition that protest against this dangerous precedent to directly interfere with this girl’s development for reasons of utility.


A Statement of Solidarity for the Dignity of People With Disabilities: A Reaction to the "Ashley Treatment"

'We, the undersigned individuals and organizations, are in agreement that the growth attenuation therapy administered to the little girl known as Ashley is an affrontto her human dignity, and to that of all people with disabilities. Despite the goodintentions of both her parents and the doctors who have treated her in accordance with their wishes, we condemn these medical procedures and declare that it is neverethically acceptable to medically alter a human being for the benefit of caregivers.Such unnecessary medical procedures without therapeutic indications demean the essential humanity of the person undergoing them and of all people with similar disabilities.Whether disabled or not, people must be given the opportunity to grow and develop according to their own capacity, whatever that may be. It is the duty of both caregiversand the hallmark of a progressive, civilized society to provide the means by which all of us can reach our full human potential.

Ashley is impaired by an unknown brain disorder. Our hearts go out to her parents,and we recognize that they love Ashley and are trying their best in very trying circumstances to care for their daughter. But these unnecessary medical procedures with no demonstrated therapeutic purpose, in which doctors have surgically and hormonally altered Ashley to remain small and childlike, are misguided. While it is true that none of us can walk in her parents' shoes, we believe that this approach to easing the hardshipof caring for a child with disabilities makes the child the problem, and by doing so, makes it acceptable for well-meaning people to deny the essential humanity of people with disabilities in the course of caring for them. People with disabilitiesare not the problem. The real issue is the lack of support, care, and help from oursocial, medical, and civil establishments for Ashley's parents and for all those who care for people with disabilities. Yes, it is expensive. But the alternativeis morally and ethically unacceptable in a society that honors life and human dignity.We call on our fellow citizens, our government, and our medical establishment to treat people with disabilities as people, not as problems. We stand together and demand that doctors and social service agencies never again use medicine to strip someone of their humanity through medical procedures like the "Ashley Treatment,"and call on our legislators to pass laws that codify the right of people with disabilities to their integrity as people.'

GO TO PETITION

Thanks to Susan Fitzmaurice for passing on this info and starting the petition.


Post Scriptum:

I encourage you to sign it! My original post can be found at: THE RIGHT TO GROW UP

Saturday, February 17, 2007

PONDERING
SAINT VALENTINE

I was unsure of posting on Saint Valentine’s Day – the day often associated with lovers and romanticism. As I grew up, I did wonder what will happen when I started work or even after I finished from school. And tied to some fantasies I had as a teenager was hope that one day I would find a companion to join me in life's path.


CAPTION: Cupid sculpture ravaged by the elements (courtesy of http://www.sxc.hu/index.phtml)


LESSON 1: PITY IS NOT SYNONYMOUS WITH LOVE

I recall how once I was left alone during a local disco only to be ‘rescued’ by a friend’s sister who accepted to dance with me mainly because she probably pitied me. So, despite any talk of the power of love and the ideals of true love, the facts taught me that how I was perceived by others had much to do with the kind of relationships people like me should aspire to. And believe me, any relationship based on pity is headed for disaster!!

I made friends and have consequently passed through the awkward first crushes as well as being infatuated at times (better stop there). But I would rather be with people who respected me and treated me as an equal rather than look down at me as if I was some sort of misfortunate person. But back to the lessons I have learned …

LESSON 2: ROMANCE IS NOT FOR DISABLED PEOPLE

Moreover, There are as usual extreme perceptions surrounding disabled people, from one saying we are ‘asexual’ or virtually sexless, to the other which is equally damaging labelling us as ‘hypersexual’ or with extreme sexual appetites. True, we cannot equate sex with love but such images and preconceptions only help disable us in the pursuit of any meaningful relationship.

Besides this, I can recount how difficult it is for me as a wheelchair user to navigate the built environment. And there are also difficulties in finding transportation and services that are accessible. Not romantic stuff to think about really, but these are extra things on my checklist to consider if I were to write – say a romantic novel …

LESSON 3: IGNORE LESSON 2

Having an impairment should not, in an ideal world, be a statement bout my moral conduct, my preferences, or even my circle of friends and interests. It should be an interesting attribute that sets me aside from the rest of other men. I could say that I don’t walk but can wheel around. Or that being pushed around is a pleasure … that sounded kind of awful really… anyway you get the point…

A (BELATED) VALENTINE POEM

I do dabble in poetry, often romantic (depressing?) verse that echoes some of my preoccupations and even hopes… here’s a short excerpt from a recent poem I wrote on St Valentine itself:

{…}
I know she dreams and wants to know,
The meaning carved deep within her soul.
And yet I wonder why I write this now.

I might be seeking what cannot be done,
To capture what I can never truly know.
As if I could ever stop the river of my destiny,
Or put on hold the motions of the cosmos.
{…}



For more on St. Valentine’s day visit:
http://www.history.com/minisites/valentine/

Sunday, February 11, 2007

QUESTIONING THE ANSWER

The weekend usually is a time when I can think about the past week and my life in general. And sometimes there are events and people who make you think again about the questions you are seeking to answer, or about the answers you think you have.

I have been in such a position for a number of times, especially when I was growing up and started wondering whether there was anything ‘wrong’ with me…

I could understand that I was different from the rest of my peers … But then why was I different? For most of my childhood, I couldn't accept that my impairment was part of me and I did deny that it existed. After all, I knew that the evil guys in movies or books were usually ‘cursed’ by their impairments…

And believe me, the idea that my difference – however slight – was perhaps a sign of a fault within me could either mean it was:

1. A clear manifestation of original sin perhaps?

2. An ‘abnormality’, meaning I was a freak?

Undoubtedly, it was a shocking ‘discovery’ for a 7 year old at which time I began to become more aware of how others outside my immediate family viewed me.

This truth was simply that I had an imperfect body, something that I should hide or masquerade. A part of me that I should try my utmost to hide or masquerade if not repair for good.

But then were these things true? Was the Answer about me a true one ... Had my life really to be less or even inferior just because my body was different? I still feel the pain when I am reduced to my impairments, when people strip me of my dignity and describe me as if I am something which fell from the sky. As if I was an alien or an exotic object.

I had come to believe I was not human being. Yet, I knew I was not an alien, not anything who fell from the sky. Not even an angel from heaven.

But now the truth as I see it is rather different…

I am human. I am capable of good as well as evil. I have loved, and learned to hate. I committed mistakes but also did good things. I have loved and lusted. I said word and did things I am proud of, and others I now regret. There is nothing sinister or divine that distances me from the world so much. I am, once again, human – with all my faults…

The ‘fault’ people judge me by … well it’s not my own doing. Yet, it’s part of me inasmuch as people might secretly loathe it or frightened of it, it is part of me. For it’s not a problem to be different. The problem is when this difference is regarded as undesirable or s misfortune. And implicitly, it makes you feel as if you’re undesirable or less fortunate.

But does it have to be that way? Martin Luther King Junior., in his famous speech I have a dream against the discrimination Black Americans faced before they were granted their civil rights had this to say:

“I have a dream that my four little children will one day live in a nation where they Will not be judged by the color of their skin but by the content of their character. I have a dream today! I have a dream that one day, down in Alabama, with its vicious racists, with its governor having his lips dripping with the words of "interposition" and "nullification" -- one day right there in Alabama little black boys and black girls will be able to join hands with little white boys and white girls as sisters and brothers. I have a dream today!”

Full text available from:
great American Speeches

The situation has improved for Black Americans today but there still needs much to be done. But this message also applies to me as a disabled person…

Am I not judged by my impairment?

Don’t I wish to be included with others in the running of the country and in my social life without having to struggle?

Can the answer about my life be simply a tragic novel, or worse, a case history that is stacked in some hospital ward? Is my body the answer to whom and why I am? Is it not just part of me, as valid as skin color or gender? Should not I be then searching for new answers?

Friday, February 09, 2007

THE RIGHT TO GROW UP

I’ve changed a lot since this photo was taken of course but the experiences I went through at that age still affect me today. Undoubtedly, childhood is one of the best times of our life, as we don’t stop to worry about life, the future or even our reputations.


CAPTION: A younger version of me with a cheeky smile. Taken during one of my visits to London, UK.

Of course, I was a quiet child who never got into trouble… err… ok that’s not quite true … but my point is that we take it for granted that we should one day lead our own life and take our own decisions. Yet, as an adult who is a wheelchair user, the tendency is that in a public setting I may be regarded as a child and it’s not the first time I’m treated as one.

Believe me, it’s not nice at all. And the worse thing is that you’re expected to remain calm as the waiter asks your friend what you’ll be having and then having to foot the bill yourself … aaaah!

Now, on a serious note, the fact is that disabled people are often treated as children. This is particularly true of people with an intellectual impairment who are regarded by many to be incapable of speaking for themselves. Granted, you may find people who may find it difficult to express who they are but that doesn’t mean they’re not persons.

Thus, it came a shock to me to read about Ashley, who was given treatment to stop her growing. Whilst I cannot judge the parents for taking such a decision, I shiver at the implications of such an action. For in crude terms, they have not only engineered their daughter by altering her growth but they also stopped her from becoming a woman.

Both interventions, to my view, reduced Ashley to a means to an end. The end being of course ease of portability and so that she will not be difficult for any staff to handle. So, instead of tackling the social and structural obstacles to people like her, the simple solution was to change her!!!

If this had not been Ashley, but some other girl, there would have been outrage and protests. But given that she’s not considered as a child but as a ‘pillow angel’, the interventions were not only justifiable but also apparently commendable. Inasmuch as parents should not abuse or violate their children, such medical action should not have gone ahead.

Who has represented Ashley all this time? Nobody it seems. We should be asking ourselves why this happened. Why have the ethical boards that agreed with such a provision that is for all intents and purposes, a violation of her body and her right as a human being, accepted that this was the only sensible choice for her?

And what does this say about the value we give to people with impairments? Does it not indicate that as long as we behave or are manageable, we may just survive if we become children ... in every way?

I’m no longer that cute little boy in the picture. And although childhood was a fun time it was also the time when I knew that certain people wouldn’t accept that I was like any other boy. But that doesn’t mean that because of that the problems I face today are my doing and that it’s my fault for being born this way. But then, I think that I couldn’t choose what I look like but I can choose what I do with my life.

And people who must take decisions on others should never forget their responsibilities to protecting the rights of thei r people, especially if they are children. And their judgments should never be based on preconceptions or misguided good intentions.

If you've missed the story go to:
ASHLEY'S STORY

Wednesday, February 07, 2007

STORYTELLING

A basic need that we share across cultures and geographical locations is our need to communicate. I've been reading an audio book by a Native American Indian Joseph Marshall III.

Native Americans have had a long oral tradition, which means that knowledge, and wisdom was passed down the generations through word of mouth. And that sets me thinking about our need to communicate something, to someone.

I cannot explain my preference for writing but this is perhaps due to the fact that I grew up with books and was simultaneously hooked on TV for a long time during my childhood (strangely as it may sound). The magic in writing was that it extended beyond myself and captured a moment of my life in time.

I have come to appreciate different means of communication. Perhaps more so now I’m aware that communication presents us with an opportunity to tell our story and to be – at least for a time – in someone else’s awareness.

And whether you communicate using:

Sign language (a symbolic, visual mode of communication I am appreciating now)


communicators (devices used to facilitate speechdue to impairment) )


Blinking or movement (these can be used to control various different devices and assist many people with severe physical impairments)

Art - visual or auditory. Anything that others can derive meaning from.

Here I am writing my experience and views on life. This is indeed my story. But with the explosion of blogging, I find myself presented with an overwhelming number of people telling their story. However, despite all the diverse views and even at times ‘junk’ content, this conflagration of words on the net represent a need to express who we are: To express our individuality, our self as autonomous of space and time. Even to achieve immortality and fame.

Interestingly, the web has enabled some disabled people to express their own stories as I discovered when following some comments. A good example of such a blog err about blogs is:

THE GIMP PARADE
http://thegimpparade.blogspot.com/
And yes, my blog gets a listing there…

And I must state that these stories are important. As through them, we learn of the people who are often misrepresented in terms of labels or stereotypes. My affinity for people who are different and are proud of their difference has been with me since I can remember. Unfortunately, our voices and images may be obscured by the way we are viewed and by the way we are judged.

I am not ashamed of the fact I am a wheelchair user. Or that I have been blind for 3 years of my life. Yet, it is still difficult for me to just go out in the world (provided access) without the knowledge that there will always be a hanging cloud over me that marks me as very different from the rest. And perhaps it’s even more difficult when it comes to reckoning with the most beautiful expression of ourselves.

Or expressing love for another person.

Not knowing. But still needing to express it in some way or another. Because, I suppose, can there be a storyteller without an audience? Can there be love, emotion, or humanity without another human being to acknowledge it?

Joseph Marshall III’s site can be found at:
http://www.thunderdreamers.com/

Info on sign language:
http://www.thefreedictionary.com/sign+language

Monday, February 05, 2007

SILVER STALLIONS AND OLD AGE

There are so many things going on in my life that it does get difficult to keep blogging day in day out. Although to be honest, it shouldn’t be much of a hassle given it’s not being graded or anything. However, one realization that got me thinking last Friday was that I’m not getting younger. In fact, that should be obvious… but I am feeling old. Much older in fact than I previously thought.

It all started on Wednesday when I ended up speaking to an intelligent young man who is currently representing the interests of children as appointed by the Commission for Children. I had the opportunity to explain what disabled people understand by disability and some of the issues that we deem important. As inclusion is happening in schools over here, it was a pleasant surprise that he got the hang of these issues in the short time we talked. Well, that’s not the reason I felt old but I had to say that there is still hope in the world if future generations learn to appreciate difference.

Anyway, I found myself giving a short talk to disabled people who are currently gearing for a course designed to prepare them for university education as the educational system has for a long time (as in other countries) failed disabled people in Malta before the introduction of integration and later inclusive policy. It has now been about four years since I graduated in English over there and even though I do lectures there once in a while being there once again made me recall all the things I did over there. Yes, besides studying …

Another thing I started doing since my eye operation was to use my electric scooter, which is well … fun! I have affectionately called it my ‘silver stallion’ although it does sound as if it’s some Arabian horse of some kind. No, it doesn’t feed on grass but uses a battery. But it’s strange how people once again keep asking me the same old same old questions… such as:

How much does it cost?

Where did you get it?

Etc. etc.

These are really – in most cases – innocent questions. But please, if I had wanted to become sales representative for the Scooter Corp. (not real brand), I would have advertised it on my blog, wouldn’t I? I forget … how many people I meet on the street know of this blog?

Whoops…

And about my feeling of getting old … well, it’s a fact. I’ll just have to live with it I guess. One thing is for sure, I’d better wrap it up for today.