Recently, my nephews Matthew (who is 4 years old) and Chris (just 18 months old) came for a short visit in Malta. The experience was a positive one because it brought about aspects of myself that I rarely see. A good side of me of course – my inner child. Before saying that this should come naturally to me … given that I’m an ‘eternal child’, I can assure you that that’s a myth. But that deserves another post altogether …
This post is really about the resourcefulness of children in new situations… and how an adaptive device can turn into a lethal weapon...
Four-year-old nephew Matthew decided that my walking stick was a shotgun. Whilst I don’t condone any form of violence and aggression… the game was simple. He practiced target practice. And the target… me of course! I’m lucky to be alive after that but I managed to disarm the little bandit.
Well, the second instance involves my office chair, which I like to use indoors. My nephews were literally fighting to hitch a ride on it across the room. Obviously, at the time I was sitting elsewhere and not crawling on the floor…
And these demonstrate that it’s not true that kids won’t relate to disabled people. And whilst my eighteen-month-old nephew Chris still eyes me with suspicion when on my wheelchair, I think I have bonded well with Matthew. He does make fun of me, yes, but so far he has never mentioned my non-walking lifestyle. Yet.
I know that my nephews know that I’m somewhat different from my other brothers and sister. But the thing is … he doesn’t make it a point to treat me any differently. For Matthew, especially, I think that having a disabled uncle is not such a big deal. But I know that there will be a point in the future when one of them will ask about it.
So when one of them approaches me and asks:
”Why can’t you walk?”
I hope to be prepared with an answer. Without shame or fear that my nephew will suddenly become afraid of me … besides, at least he’d ask me for an answer…
And yes, until the next time they’ll be coming, I’ll be missing them a lot!!!
Sunday, June 24, 2007
Saturday, June 16, 2007
I was sick with a persistent fever the past three days … so I had no energy to think about anything, including my studies (!) It felt like I was dying. Really … But this post is not about uncovering the mysteries behind the fever, and it’s certainly not a post (you might find elsewhere) that usually ends with a message along the lines of:
“Thank God you’re healthy (etc. etc.)”
For it’s not my intention to push away some of my unhealthy readers. And yet, as I write this I remember two newspaper articles I recently read on a local newspaper which implicitly or explicitly reinforced the idea that being impaired is a very sad state of affairs (like a disease) and you should do whatever it takes to become ‘normal’ or get better ...
The stories were about two disabled people with different backgrounds. A woman who acquired her mobility impairment after a disease and another who had it from birth. Although the time they got their impairments varied, they were quoted as saying that all they wanted was to be ‘normal’… which is really bad news for me as I have given up on trying to be ‘normal’ a long time ago.
This is not saying that sometimes I don’t take a nostalgic trip back to when, with my mobility impairment, I could still manage to cover long distances and even rode a bike and would go places on two wheels … yes, those were great days but I cannot live in the past… or hope that some day I’ll walk again as I did before. Otherwise I’ll just lie on the sofa watching TV or on my computer (may be writing a post every hour).
I also had to make some important choices.
I chose to stop doing physio around 10 and get more of a life. After my arthritis kicked in when I was 18, I had to use a wheelchair but life had to go on. My impairment rarely disappointed me! It’s the people who insisted I be more ‘normal’ that crushed the view I had of myself as a child and as an adult. It was this which was my real enemy. And the unfairness of it all is that by accepting that ‘normality’ or as it is understood by people as being:
“The ability to walk, speak, hear, see, think and reason”
Is a better life (or an ideal we should strive for), might force people with similar impairments to hate their life or even themselves. I know I did. And whilst the definition above is very generous to non-disabled people, it is largely based on prejudice which judges our impaired bodies as inferior, if not worthless.
This is what is called ‘internalised oppression’ and it may be one of the toughest form of oppressions because it is self-directed. Indeed, impairment is always described in tragic and negative terms and it is accepted by many (including some people who have impairments themselves) that having a child with no impairments is better than having one who has an impairment.
And whilst it doesn’t really make me feel better about myself, if you think about it it’s not different from saying that having a boy is better than having a girl. The only difference is that people are ready to sympathise with arguments against giving birth to a baby with impairments because they think that we’ll always be less than others whilst the idea fills people with fear and horrible images for the future. A future they think they can change by controlling a physical feature.
And what about my disabled existence?
We cannot turn back to a place where we think everything was perfect, or to a time when we think things will be perfect. If I believed for one minute like some do, that if I got to walk I’d be the happiest man on Earth, than I’ll never be happy with myself because there will always be something else that bothers me. Despite my choice to stop physio aimed at straightening me a bit, I don’t regret it. But it might not be a good choice for everyone of course I’m just saying it was for me.
Sometimes it’s not us who need to change but it is the world we live in that needs to do the changing. I am not saying that I’m perfect or even always right (though I sometimes want to think so) … I’m saying that it’s not always right that we should sacrifice ourselves to reach the impossible dram of some ‘normality’. For if we did that, we’ll be just accepting that we are faulty and inferior human beings because we have impairments. Then life becomes once again a desperate attempt to recapture a time in our past, or to hunt down a future which will never be. Or arrest a past that never was.
It’s not our impairments who make us lonely or excluded. It’s not our impairments which make us unhappy and depressed. And no, it’s not our impairments which make us happy and cheerful either. It’s who we are. The real tragedy is if we believe that if our impairments went away we’ll be better off.
Tuesday, June 12, 2007
If you are a EU citizen, you can help too!
SUPPORTING THE RIGHTS OF DISABLED PEOPLE IN EUROPE
The Maltese Council of Disabled Persons (McoDP) urges disabled people in Malta and their families to back up the European Disability Forum’s campaign to collect One Million Signatures to stop discrimination against disabled people in the European Union in all sectors of life in European society.
You can easily make your contribution by accessing the link:
We encourage all disabled and non-disabled people in Malta to support our rights as citizens of Europe.
Gordon C. Cardona
Maltese Council of Disabled Persons (McoDP)
Although I like to keep my role as a disability activist apart from my blog writing, I can't simply avoid passing this on. So, here's something from our organisation - the Maltese Council of Disabled Persons (MCoDP). Yes, I'm also the president... eh!
Sunday, June 10, 2007
I can’t say that I haven’t had my fair share of fears as I grew up. There were terrible monsters and ‘creatures’ out there to get me when I was asleep. I would like to think that I have outgrown most of these fears now and that I don’t need to hold my furry soft toy for me to sleep...
Left: cartoon of an odd looking ball with fangs and an open mouth. Courtesy of Jangeltun from StockXpert
Yet, these monsters that we are made to fear may still haunt us. Or rather what they represent to us that are the stuff of fear … it’s not that we would have a problem with a goblin visiting us or even an alien coming to say ‘hi!’ that gives us sleepless nights but the things that they might do to us that sends shivers down our spine ... after all, they could Torture us or even kill us, can’t they
But then again, what about the ‘monsters’ we are made to fear? Aren’t they almost always physically different, than the rest? Or even have different ways of living their life? Indeed, excepting for modern stories like Shrek, the ugly and ‘deformed’ (how I hate that word), is synonymous with evil and with curses. And it doesn’t take a lot of logic, as a boy, to think you’re also some kind of odd ‘creature’… well, your legs that only bend at approx. 90 degrees and well your hands not exactly straight … you start wondering… perhaps… I am sinister after all… The fear I had wasn’t s much as of the ‘monsters’ outside but the ‘monster’ that might be within me.
I was particularly struck by the tale of Rumpelstiltzkin – I don’t know why – perhaps it’s because it was one of the fairy tales that had the most colourful illustrations. The fact remained that there were things that physically I thought I had in common with the creature. I grew out of it eventually but I guess part of me was marked by the message that I was receiving implicitly through these tales. That good and evil are not simply based on actions but on physical appearance. That it’s not really what people say that matters but whether they are beautiful or smart.
The shape of fear is projected into people, who are to be feared to some extent. Whether it’s for what they represent, or who we think they are, fear takes a shape which distances us from who they really are. So, I become, as a well intentioned man once described me, ‘someone who us burdened by my cross’. I am tempted to ask the whereabouts of the cross, but I know he meant the fact that I was not fully mobile… and because I’m burdened by my ‘cross’, other people should think me brae… or even very brave. Yes, I have had my fair share of situations where my life was on the line. But I only did my best to go on because I knew that I didn’t have much choice.
After all, I always forget to bring my magic potions in emergencies. No, seriously, I don’t use magic powers any more… it got me in this mess of a world after all. There it goes again. My impish writing hand! But then, people have thought stranger things of me. But I’ll keep that for future posts…
Thursday, June 07, 2007
Yesterday I’ve been watching a documentary on cosmology or the ‘study of the universe’. Well, other than bringing back memories of when I was an avid astronomer, it also made me wonder about the vastness of the universe and how tiny, if not insignificant, our planet is. Indeed, the universe has been there for billions of years… and yet I wonder…
Left: A picture of me at about 10 years of age, with my telescope when I dabbled in astronomy.
It is at these times that I am struck by a combination of awe and fear. This emptiness that surrounds us, what about us? What about the grand designs we may have had in our life… it could disappear into nothingness. And there is where our fears reside. The great unknown that we must all face, or the eventuality of death. Nor others’ but our own.
Perhaps it’s the same feeling of awe and impending loss that many soldiers would feel during D-Day. Perhaps not. What is sure, that if we had to compare the brief history of humanity, it is quite absurd that we take ourselves so seriously. But then again, this world is all we have… and yet, again… I wonder how many before me have been driven to an early death.
Or else, they have been denied to be acknowledged as persons and robbed of their dignity just because they didn’t conform to the expectations of some ideal – however alluring. I do sometimes wonder what will become of me in a couple of years time. Whether I will be happy with how I lived my life. Or whether things will get better or worse.
Well, this life of ours will be always a step towards the unknown. Whether we like it or not will not change this fact a single bit. But there is a source of hope, and even if it’s simply the recognition that we’re doing our best, it may still get us through to tomorrow. The unknown.
Friday, June 01, 2007
I don't like watching programmes when people decide that they need to change something physically about themselves and feel that if they don't, their life would remain err... miserable. I'm not judging these people of course because there have been times when I did want to be taller, or simply walk straight - something I could never do.
But what if tomorrow I could rid myself of my mobility impairment? Well, I'd probably be running like mad over the place and that includes bumping into people... into things... etc. etc. Until I get really really exhausted. And sit on a chair.
And then when I want to go somewhere I'll probably be using a car... well, let's think about it... what about when I grow older? With all probability I'll be needing a wheelchair after all those years of running here and there and bumping into things.
So after fifty odd years of crazy commuting, I'll be back where I am now. And given that by the time I'll have forgotten probably all about my current situation, I would be very very sad for being unable to walk as much as I did when I was younger.
Nope, that looks like a full circle to me. Besides, the probability of me walking is indeed almost impossible whilst I'll have to learn to live a new life - being this way since birth! So, I'd rather be left like I am now without anyone coming up with any strange ideas about how to best 'fix' me. Unless of course you don't want to send me a million Euros... just kidding of course...