Sunday, December 10, 2006
As those of you who visit this blog can tell, I haven’t updated this space for quite a while now. Indeed, there were many things going on since my operation was successful which threw me into a rather pensive state. The fact is, even if many tried to understand, the shift I made between who I was becoming to the person I’m discovering now is pretty significant.
The answer to the question of whether being blind for three years has changed my life is an emphatic ‘yes’. And being now able to see things around me and perhaps more importantly people, has changed the way I view the world yet again. And that’s when I was finally adapting to my new life!!!
Admittedly, I am now able to do things that I never previously could do. Such as taking photos of unsuspecting people (which makes it even more fun) and so on. But the reason I do not engage in discussions that render the whole issue as me having to say that this is ‘normal’ is because it’s not entirely true.
Forgetting for a moment that I remain a wheelchair user, the ideal of ‘normality’ is so hazy and inconsistent that people who say that they lead a ‘normal’ life seem to me to have lost all ambition in life. Of course, what they mean to say is that they do not use assistive technology or require support in negotiating their environment. But then is that not something we create?
As the charity marathons are soon due, I must remind myself to keep calm and rather relaxed as I risk having a heart attack. Because at this time, we get lots of well meaning people who talk about disabled people like myself as being ‘less fortunate’ or as ‘angels’ needing love and care. And a common thread is that we, as disabled people, seek ‘normality’…
As many disability activists can attest, this is not the spirit of ‘inclusion’ but rather of integration – which seems nice and attractive (especially to some politicians) but is only placing the burden of change on the individual. It’s not different than saying to women that in order to be accepted in society, they must become more like man and give up some of their choices.
The perfect world many people – including some religious types I regret to say – is one with no impairments or disease. Whilst I would agree to a world without disease, the former … err …. Won’t have me at all! However, a world without these things is not only unattainable but has dangerous consequences. Was it not the same motivation to create a ‘perfect world’ the very same that gave rise to the practice of ‘genocide’ and mass murder?
After all, my idea of ‘perfection’ is not one that is objective or value free. The fact that I am attracted to particular features or personalities should not be saying something about the person I am judging. But for many of those who believe that impairment is a curse will normally freeze when confronted with an opposing argument – especially if submitted by one of their ‘weaker’ members of society.
The same arguments of ‘inferiority’ or ‘weaknesses has been also flown in the face of women who were fighting for their right to equal status. The bias being of course that it was not normal or even socially acceptable for women, for instance, to have a job or even vote. This state of affairs still exists in some parts of the world, mind you but the situation is slowly changing in the West.
Although chauvinism will still exist, the fact is that it’s now considered quite normal for a woman to work or do things ‘men’ were considered able to do. But there are still structures and attitudes that need working there in spite of all that! The situation facing disabled people is perhaps more complicated for the simple reason that not only do attitudes that point towards a seemingly innocent ‘return to perfection’ are bombarding us but that structures still exclude us.
What worries me further is that this bias against the life experience of disabled people, whatever the impairment, is leading prospective mothers to abort their child on the sole basis of whether impairment is detected. Yet again, this policy reflects a world view that places preference on what is considered ‘normal’ or acceptable. And in every instance, the decision on who should or should not live is made by people who are badly informed about the truth of our life as people with impairments.
No wonder that together with the ideals of love, peace and tolerance, the idea of a perfect world also contains hidden demons. For in this world, there is also a strong motivation to seek out and destroy those perceived as ‘imperfect’ or ‘abnormal’ or as failing to attain the physical, sensory or intellectual ‘norm’ of the masses. For their own good, they would say.
For a time, my idea of a perfect world was not very different than that. But when I realised the full implication of a society that praised you as log as you fitted a particular mode of behaviour or looked in some way. When I realised that despite the rhetoric of love and tolerance, people saying those words were in the same condemning and labelling others. When I learned that cure and care often meant the invalidation of the value of a person and his/her enslavement into an institution.
Then when I was blind, I started to see. I learned quickly that life was not fair not because of any ruling nature made. But it was rather in my interpretation of what was good or not, what was perfect or not, that reduced people to numbers and cardboard characters. And now I want a different world. A perfect world that embraces diversity but goes further than that. A world which gives means for everyone to make a contribution, however small.
For despite it all, we often forget that humans created society and that we are responsible for its course. If we limit our idea of perfection to some set of values and attributes we will fail to appreciate the basic to all this is our humanity. This difference is also part of that humanity.
Monday, November 27, 2006
It’s really fascinating how people have come to love calling disabled people, people with special needs… I mean where can you find such love and compassion… or such a courage to move on in life… it’s really very ‘special’ being disabled, having an impairment… and is of course always an excuse to celebrate!!! Or is it?
I am uncomfortable when people call people with impairments ‘special’ with great zeal and enthusiasm. Perhaps the novelty wore off when I realized what people really meant when they called me a a ‘special kid’ or indirectly implied it. If people regarded people with impairments as ‘special’ you would expect them to be in the forefront of public life and society isn’t it true? And you wouldn’t hear the laments of parents who have been given such a ‘terrible’ news that their child will have impairments would you?
I mean if being special was such a great thing, why would people shun it and render the life of these ‘special people’ like myself so difficult? The answer may be simpler than you might think. When people label me ‘special’ they are not doing me any favours.
In fact, ‘special’ to all sorts of people brings really bad memories. A term which can be associated with segregation, separation and even elimination. The worse thing of all is that bringing together people who are different human beings under one single label, however nice it may sound, is actually a tag that emphasizes my difference in such a way as to make it unreal and foreign.
Would you like to be introdyuced as ‘special’ during a social event? Would you like your friends to regard you as ‘special’? And would you liked to be referred to by politicians as ‘special cases’? I don’t think so and neither do I!
I use my wheelchair to get around … does that make my moving around any special?
And like some people use spectacltes to see better, other people may use screen readers to read text or communicate through the use of sign language. Unless you’re not high on some drug, as far as I’m concerned there’s really nothing special about trying to go on about life. But perhaps, there is something special about our life, but not because we have impairments but because we’re alive today and that we’re able to read this.
And it’s really because we’re living today that I can make such statements. Up to a few years ago, the assumption would have been that not only my life was plain useless but that it was also a burden on others. This negative legacy still exists today as I soon discovered when I was growing up. Being labelled a child with ‘special needs’ by others has never really happened to me within my school. But outside of my childhood circle, and also in my adulthoood, the term ‘special’ still evokes very bad memories. I think I owe it to the growing generation of both disabled and non-disabled children living today to destroy the myth of the ‘special chuild’.
For wahat’s the use of flattery and fancy labels such as ‘special’ other than further distancing me from you? And if you made it to this point you probably liked it enough to keep reading. And I don’t have ESP (otherwise I’d be somewhere else, example: Las Vegas) but it’s just common sense…
Wednesday, November 15, 2006
This will be my last post at least till next Tuesday as I will be off for a weekend to get into groups with my course in Disability Studies. It will be an occasion where I meet once again the other students on my course. It will be a hectic year and hopefully I’ll get the chance to drop in a post once in a while.
Traveling is one of the things I like doing. But now that I’ve got to plan most of it myself it becomes a logistic nightmare. Well, I’m a very brave and courageous man I know … so I’ll put on my Armour and prepare for my long, long and even longer journey than I could ever imagined.
And this time I’ll also be traveling by train on the way back. Long story… Anyway, for those wondering how a wheelchair user can make the trip to a foreign country it’s not an easy task. But I’m of course as many people say persistent, relentless and an avid risk taker.
Not really, a.
Because considering the many disabling barriers I will face, traveling can become an ordeal and drudgery. Making sure that my wheelchair gets to the destination, ensuring that my luggage gets there, ensuring that I get there in one piece.
All pretty mind boggling if not bone shaking thoughts.
But it must happen. As Trekkies (unlike myself) would put it. I’m preparing…
To boldly go where no man has gone before
Which if I think about it is rather untrue and slightly sexist. But the challenges ahead involve the same old, same old things including lack of access, the usual patronizing pests here and there and perhaps if I don’t remain that cynical I may even find some interesting travelers on my way.
I will have a good time when I’m there for sure. And if my tutors or fellow students are reading this, I’ll be meeting you soon… as well as my other friends who I’m meeting over there. So I’m off to Leeds for some time. That’s what I really wanted to say.
Monday, November 13, 2006
Ok. Last Wednesday was my 25th birthday and I should have really written something on my blog. There has been a lot of goings on in my life that it’s been quite hectic and well confusing. I had to read a lot of material to get me prepared and ready for my trip to the UK as I’m starting my Masters again.
There’s of course the new reality that I face as a blind person returning to the sighted world. But that wouldn’t be an issue if not one of adjustment to another way of viewing the world which is mostly visual and not vocal. Unfortunately, my questioning has brought me to ask myself once again who I am in the present. And one of the issues that still troubles me is the one relating to my status as a disabled person.
For as long as prejudice and structures that deny the worth of my life are rampant out there will not be an end to the reality we call ‘disability’. For despite the facts that point to other directions, my life remains dependant on the very forces that defined me in the past. And I’m not referring to classic images of dependency here. But rather the tendency for society to condition our thinking about what is true or false.
I was born in the year 1981, or the year declared by the United Nations as the International Year of Disabled Persons. It’s perhaps ironic then that I find myself 25 years on writing about the same issues that people with impairments had to face then. I’m obviously surprised to note that the bias against people like me is still ever present, if not stronger, as times go by.
I still feel it’s my responsibility to be on alert to the consequences of any negative presumption, however small, that people may harbor in relation to people they perceive as ‘deviating from the norm’. I want to express my disappointment at being labeled as ‘special’, ‘brave’ or childlike. Assumptions based simply on appearances. I want to dispel the myth that implicitly or explicitly favors one form of body over another.
This myth is a product of many hands, be it some doctors, some religious leaders, some media directors, some media producers or some news producers, etc. etc. The story of the myth has many origins but essentially they silently agree on one thing… that the life people like me live is really worse off than theirs.
And 25 years on I do laugh at these views. For these people are really limited in their perspective on my reality. And yet, these pronouncements sadly still retain the status quo. In effect, they also deny that an alternative physical, sensory or even intellectual reality is as valid or as significant as the ‘regular’ experience of life.
Now I’m still awaiting those presents… hope they are not wrapped up in packing that would take me days to unwrap!!!
Sunday, November 05, 2006
The thing that I know is that once I became ‘blind’ I must have taken on board all the things I thought I knew about blind people. I was lucky enough to have started meeting other blind people early on as I would have suddenly found myself not only left out but also totally misunderstood by others. All thanks to a culture that excludes people with impairments from being there. And as people, not as trophies or symbols!!!
As a wheelchair user, now, I deem that it would be a similarly overwhelming experience for a non-disabled person to find himself or herself with an impairment overnight. I’m not saying that there is no shock or fear involved. But it just wouldn’t be that difficult if disabled people were more visible and that means that our structures are geared towards inclusion from the start. But as all we have is geared only towards a particular view of ‘personhood’, the shift will be gradual. But it must start…
True, there are features of my body that will remain my own concern. I don’t expect otherwise… but the fact remains that for me to escape the patronising pest I mentioned earlier, I must rebuild the building with an accessible exit route… fast… because in those few minutes I cannot change his/her attitude…
And the thing is that it’s not a mere question of attitude or culture. People with impairments have been demonised, ridiculed, pathologised and even sanctified. But they have never been truly part of the ‘civilised world’. At least not on their own terms.
Both ‘culture’ and ‘environment;’ are integral to my inclusion in society. I’m not here to go through a daily test to prove my worth as some non-disabled people would have me do. I’m here to be myself. But right now, people with impairments like myself, are left at the fringes of society.
I have had many dreams as a young boy. But inasmuch as I dream, I know that no dream will become real unless I take action. And that action implies changing the way things are and fighting the status quo.
People may call me many things. And may be I’m just another voice in the wilderness. But even if I wouldn’t want to end up in the middle of the desert any time soon… we must note that the animals and plants which live there call it home… as do some nomadic people…
Is the life of ‘nomads’ any better than others? I just don’t know… but is my life of value? I know it is. But can I be witness to that fact? Not always. And why? Just because some people think that some lives are more human than others. And it’s not simply in the mind but it’s reflected everywhere I look…
End of POST
Saturday, November 04, 2006
As I relive once again experiences that I thought long gone, I notice that there’s a lot of emotions bubbling up once I get to actually ‘seeing’ what I’m doing. Yes, it’s sometimes overpowering and rather exhausting. But another line of thought crosses my mind here. And a strange one. Why is it so hard to be once again ‘sighted’ when it was part of who I was for over 20 years?
And the answer to that is perhaps that I can notice definite changes in the amount of choices I can make. Before you charity supporters start taking notes here, I feel that it’s not the change in my senses that have made this leap. True, I can now appreciate the visual more but there are many aspects of life than meet the eye (literally).
The lack of choices that I felt as a blind person were more tied to the fact that people took for granted the fact that:
People can see
People who cannot see are not part of us
The second fact is more or less implied. I remain bewildered now that as a wheelchair user I still have to face the occasional stare and comment … but what really bugs me is when I find a flight of steps to the only route of escape from such individuals…
END OF PART 1
Sunday, October 29, 2006
The world that I am now in is the same one I’ve been for the past three years. The only difference is that now I have come back to part of the world or rather regained a chance to explore the same world from another sense.
I guess that amongst the questions that I’m finding myself asking is why did this happen now… and to me. For in truth, my life as a blind wheelchair user was slowly becoming meaningful and significant. But to me. In many ways, I feel that this experience has taught me many things about myself. And about others.
I am still blind in one eye and remain a wheelchair user, so I expect that disability remains with me at least until the society that surrounds me acknowledge the value of difference. For even if there is a ‘radical’ shift in my vision (physically speaking), the barriers that I find on a daily basis still remain.
I wake up to the same world. A world that still values perfection in terms that are clinical and physiological. A world that pathologises and mythologizes people with impairments robbing them of their humanity. And I’m not just talking about our right to be regarded human beings, but the right to involve ourselves in the world around us.
The operation has offered me the chance to see again. But it’s not the complete solution to my problems. Or the problems of others. Indeed, the fact remains that my life would be better off if people did not continually have to talk about me as if I were the problem.
For we have the means to make life easier for everyone. We should be technologically advanced, shouldn’t we? But why does society strive on to seek a ‘cure’ or a short-term solution to the problem when the means to include all of us is there and available. I’m not sure about the answer to that. But I think it has much to do with our obsession with an illusion we call ‘physical perfection’.
I don’t want to live in a society that accepts me as long as I’m able to adapt or fit its structural setup. I want to live in a society that accepts me when I am much older. A society that gives a fair chance to every individual irrespective of any prejudices it might have against that person. And it’s not just a change of eyes that is required, but a change of minds…
Thursday, October 26, 2006
Almost a week has passed since I regained vision in my right eye. After recovering from the shock of watching my changed self in the mirror I now am slowly settling down in the world of the ‘sighted’. It’s surprising and unreal to find yourself back into a world that you once knew existed but being so far detached from.
It’s really like waking up from a long dream and realizing that you have got to start all over again. I admit that I have had times when I just close my eyes to do something because not only do I do it faster but also without much effort.
I can say that there are many things that I’m doing right now that I have missed doing. Such as looking at old photos and even watching some TV. And if you’re wondering, there were disappointments and surprises as I journey on this new life.
I am not sure whether this will last or not… perhaps I’m dreaming or something. Or perhaps I died? Seriously now, being able to see puts things into perspective.
For starters, it sets you thinking about the fragility of our existence. A single event, or shift in perspective can have enormous effects on our lives.
However, The greatest lesson I have learned so far is that much of the world that we take to be real has much to do with our own view of the world. I have stepped into a different reality, yes, but this reality has brought me more to understand who I am as a human being.
It’s not just a matter of appreciating the ‘gift’ of sight, but it’s really recognizing that our position in the world is often conditioned by what we deem to be a better or greater position. But is it really?
I know that I’m living in a body that is constantly changing. But the question remains nagging at the back of my mind, why is it so hard to adjust to this world of the ‘sighted’?
I was telling Charles, a blind friend of mine, how sometimes I need to shut out the dazzling world to do some things. Yes, that may be habit and a way to rest my eyes. But in truth it also means that seeing is not simply confined to the senses.
Nobody sees though his or her eyes really. I think that we experience reality through our eyes, but that’s not the whole picture. I could compare sight to a note on a musical staff, it may enrich some pieces, but it’s not the ultimate and only note to make a musical piece complete. For the reality is that what we have built, what I have built, is in the mind. And even if I can appreciate some forms of beauty now I missed before, there are different levels and conceptions of beauty. Different steps or ramps of perfection.
Tuesday, October 24, 2006
Since I have regained vision in my right eye, I realize that I’m changing considerably. It’s funny when I write about it but I feel that part of me has died, or rather slowly dying. And it’s hard for many people to understand that being blind is not the end of the world. At least, it wasn’t for me. There is of course a considerable period of recovery since I am overwhelmed by the world of lights I see around me.
Believe me, I sometimes wonder whether this is a dream after all… and I wake up to the life I had built for these past three years. And no, I am in no position to make value judgments or answer questions such as:
Aren’t you better now that you can see?
Unfortunately, I got this question thrown at me over and over again. As well as to recount my whole experience before and after surgery. But the answer to the question of whether my life is better or not now that I can see from one eye is prejudicial. Why?
A common mistake that people make is to associate blindness with the worst of things that can happen to you. Indeed, historically blindness was associated with sin or ill doing. And then again, I’m told that an advertising campaign against cigarette smoking have included the warning that smoking can kill or cause blindness.
No, I’m not saying that everyone should stop taking medications or start smoking. I’m saying that the value of blind people must go beyond the simple recognition that they cannot see. Or that there life is miserable. I even hate speaking of ‘us’ and ‘them’ here, as it seems that I’m am now setting myself apart.
I feel that I cannot even speak of a better life after having major eye surgery to rectify my situation. The idea that we still speak of the value of diversity and then in our hearts believe that being blind is tragic smacks of hypocrisy to me!
I have been blind, but now I can see. The happiness of my life, or the choices are make from now on are a different matter. But one crucial factor that can make a difference in the range of choices I can make does not depend on my range of vision or movement. Sorry to disappoint you rehab folk…
A society that still regards blindness and physical/sensory/intellectual impairments as individual problems … … implies that society has no option but to believe impairment to be a tragic ‘affliction’. And then you have all the things that seemingly enforce this verdict on our life.
When people say that my life should be better now that I can see, it only means that they thought my life, as a blind person was not. And with the same logic, my life as a wheelchair user now is in many people’s minds a source of unhappiness that remains to this day.
But still you ask me whether my three years of living in a world of lights and shadows was really a waste of life… was if I had to describe my life …
My life as a blind person was really fine…
I rather think that it’s society that needs to do some serious re-thinking about people with impairments. I remain a wheelchair user. But I was proud to be blind. And I am proud to have been welcomed and included in the local blind community.
Stating otherwise would not only be false but would mean that I am as disablist as others who judge me by my impairment,
Sunday, October 22, 2006
I've just come back after having undergone major eye surgery to my right eye (my only remaining 'good' eye) which was a complete success. Now I can see again and read for a few minutes. However, I feel that relearning to see after three years of being legally blind is not an easy task. I will have to deal with more and more visual information that I had forgotten existed.
However, I will not be talking about these things today. I will be talking about the importance of value and difference. It would be the act of a coward to put my past as a blind person under the carpet. I mean the frustration of not being able to exert my freedom and choices. True, I still remain physically impaired, and blind in one eye. But then what?
As a disability activist, I feel that I cannot truly say that my blindness or lack of mobility was ever the problem. But in a society that sees us through the lenses of hospital visitors, we may come across as pathetic and sad. And although there may be times when we had a bad day, it's not the whole story.
Yet, for people our reality remains unnatural and asocial. I don't like it when they say that the life of a person who cannot hear, cannot see, cannot walk or takes longer to understand is a sad one. Or even a waste of life or as the Nazis put 'lives not worth living'.
That said, my life will surely change now. But I want the blind friends I made to remain there. To remind me how society negates their existence by not accounting for them. And by both being very compassionate and yet denying their and our value as people.
There's a lot that is passing through my mind right now. But I think that we should start discovering that our life is not something that can be modeled on a fancy idea called perfection. Our life is of value and has value in society. But unless the structures change, it's doubtful people will change. For where will they see us most often? In hospital, for example, when we're at our worst form.
On that note, I close and rest a bit as tomorrow should be another long day. No, I'm not going off to sleep just yet but I need a rest for sure.
Wednesday, October 18, 2006
Sometimes there are times when you know something is due to happen but when it comes you are taken in by surprise. This morning, for example, seemed to be just like any other Wednesday. Until I was informed that I’ll be admitted for surgery this Friday… a great way to prepare for the weekend right…
I can’t say I’m not worried because this eye operation has been on the back of my mind for a long time. But now that it’s here … well I am unsure of what will happen. All I can say that it’s improbable that you’ll read any blog entries for the coming weekend.
Will I survive the hands of surgeons at the ophthalmic department? Will I get out of it unscarred? These are indeed compelling questions.
KEEP CHECKING THIS SPACE
Sunday, October 15, 2006
THOU ART RIGHT IS (PART 3)
As I went on writing additional parts to this post after being inspired by a medical symposium last Thursday , I was naturally exposed (intentionally or otherwise) to different ideas and experiences that set me thinking further on the way people view my impairments…
And funnily enough one story that popped up in my mind was none other than the Hans Christian Andersen story called “The Ugly Duckling”. Right, you say… is this going to become a blog where we must get our handkerchief or tissues ready for intensive use?
I can reassure you that the answer is NO! But it’s surprising how this tale touches on the points that I’ve been making on impairment and how it’s often viewed.
The main lesson children learn from this fable (to unlearn it later) is that being different doesn’t make you bad or ‘uglier’ or inferior to others. In fact, your difference should be something to be proud of as it is what makes you unique and in fact who you are. But what happened to the ‘ugly duckling’?
The alleged duckling was simply ostracised by his ‘community’, rejected even by his mother and siblings. Not only that but everywhere he went, he was considered a misfit or as not really someone of true value.
In reality, this is not that dissimilar to what happens when there is a child with an impairment in the family. Whether it be a label of ‘special’ or ‘faulty’, the child is almost always regarded as an outsider to the rest of the family. However, the exclusion of our swan-t-be doesn’t end there…
After he desperately escapes from his community, he ends up in the real world. There too, he is considered to be ‘ugly’ and of less value, or even useless. Whilst in refuge in a house, one of the resident animals (who was sharing with a hen) warned him that if he didn’t learn to purr like himself or start laying eggs like his hen friend, he should start packing. A very warm welcome indeed! But if you compare this to the voice of society when it comes to welcoming a disabled… the similarity is indeed startling
I remember as a child, the many times I have been told that if I couldn’t walk or see as well as others than that was my problem… and walking or now seeing should be my sole reason for being …
Indeed, I did want to be a duck when I was young... err... I meant I wanted to be ‘normal’ (whatever that means) … but now I think that my impairment is something that I shouldn’t be ashamed of. In fact, I have always felt an ‘ugly duckling’ among people who have always told me that I should be quite depressed or unfortunate for not being a ‘duck’ like them… err... I did it again, didn’t I? I meant non-disabled like them.
Jokes apart, I’ve been trying to convey a clear message here. Not that there should be friendly terms between species… but that non-disabled people who have lived apart from us for so long still lump us under one label. Or else make us feel inferior for being who we are.
I clearly remember how once a doctor told a family member whether there was a possibility of ‘fixing my legs’, by this he meant surgery. I was 9 at the time. But the implication was clear. I was loved, yes, but I would be even more loved if I was like the others. That is the ‘walkers’ …
Don’t get me wrong here. I have nothing against non-disabled people… However, there’s always one or two who think that my position in life just because I have impairments is of less importance or that I should hide away somewhere where they can’t see me. The truth?
I want to be respected by non-disabled and disabled people on my own terms. Not by any funny ideas they may have about me but by who I am… And here I discover the swan within …
For despite trying to ‘fit in’… and believe me I’ve tried lots of things… I realised that I couldn’t change my physiology... and why should I? At that, should I then even change my name to reflect how people view me? Wouldn’t be pretty impressive if I could list all my ‘conditions’ behind my surname? Wouldn’t D.M. (my type of arthritis), C.P. (cerebral palsy) and V. I. (visual impairment) look impressive in my future publications (fingers crossed)?
The answer is an emphatic NO even if it were possible to add those titles. People have for long hurt me by discussing me as if I was a variable in the environment or a case study... And this is perhaps why I used the ambiguous title for my post…
The post’s title can be read as meaning “Thou arthritis…”, that is: “You arthritis…” meaning that I suddenly become patient G suffering from condition 123a, please refer to the medical blah blah or really as me suddenly becoming my impairment!
However on close examination, there are actually four words not two and they are:
THOU ART RIGHT IS
Or YOUR RIGHT OF BEING IS THIS…
This is perhaps a more realistic statement of what I encounter on a daily basis: An imposition limited by how I am viewed by a particular society. But would do I want?
I want to be valued as a whole … As a person and as a human being.
And this is not simply a matter of placing me into society as you would a tree or sign post. But rather ensuring that I am given space to express who I am, voice my opinions and make my own choices. Ever tried inserting a square block into a round one? Frustrating! Besides, it’s impossible … unless there are also square holes to accommodate the ‘square’ blocks. I’m not saying that we are squares or circles, or even ducks and swans. I am saying that many only see us for our impairment without stopping to think that there may be other ways of being.
Different, yes, but equally valid. Equally human. Entitled to expressing who we are in every sphere of life we can!
END OF SERIES
Saturday, October 14, 2006
There are of course many dangers into turning my life into medical history. The greatest danger, however, remains when it comes to discussing our rights as persons. If we are regarded as ‘medical problems’, it’s not hard to see how the myth of:
Once you’ve seen one, you know them all
Persistently resurfaces in a discussion about disabled people. Instead of seeking ways to get to know us, people often focus solely on your impairment.
Imagine me entering a room…
“So you use a wheelchair?”
I nod. Then for a complete stranger, choose from:
“Where you born that way?” or
“What’s your condition?” or even,
“I’ve often worked with people like you…”
The last one happened to me very recently. There are many reasons for this interest in our impairments but it may be because people think that:
Impairment defines character.
Wait there, you’re constantly speaking of disability here, so there is something that links you people with impairments all together isn’t there?
Yes, we speak of a common heritage as disabled people. This heritage reflects a history that has constantly defined us in terms of our impairments. Thus, we are victims of pathology, curse or tragedy. In short, we were always regarded as not quite of this world:
So, we have been described as:
OBJECTS OF RIDICULE
EMBODIMENT OF EVIL
POLLUTANTS TO THE MASTER RACE
LIVES NOT WORTH LIVING
DIVINE CREATURES OR SUPERNATURAL BEINGS
OBJECTS OF CHARITY AND RELIGIOUS DEVOTION
I’d better stop there for I’ll really start to wear myself out. But how can we be all of these things at once? The answer is simple.
Until the past 40 years, disabled people have not been describing their experience but it was always the other, be it the priest or medical examiner here, who defined who we are and our purpose in life. And even if I try to be myself, I cannot avoid being just another ‘brick in the wall’ to quote Pink Floyd for strangers and the general public.
And giving us our rightful recognition goes beyond treating us with dignity or care. It means admitting that as humans we are:
Other than being simply MEDICAL or SPIRITUAL entities. The point is that too many think that simply giving me a life is enough. For what is life outside society or the community? But yet, this same society should go even further still.
And I’ll leave you with this for today:
How can I be myself if when I speak I’ll be judged in terms of my impairments and what they are perceived as being? Will I be considered part of the community or part of the environment? And that to me would be a significant difference!
TO BE CONTINUED…
Friday, October 13, 2006
Yesterday I was invited to a medical symposium on arthritis, one of the conditions that ‘afflict’ millions of ‘sufferers’ around the world. Wait there … I have arthritis myself so I’d better rephrase that last one for my sake at least … here it goes again:
I have arthritis, yes, and a particular form of arthritis from the many hundreds that exist. It’s called Dermatomyositis or DM for short. A name that on my speech synthesizer has the habit of being interpreted as the old German currency (Deutsche Mark) now obsolete. When it’s active, it can be painful but then again it can be controlled. Added to that, I was born with cerebral palsy which has affected my mobility since childhood. A bonus to all of that is a visual impairment as a side effect of medication for my DM. That’s what you get when you invest in discontinued currency right?
Why am I joking? This is serious stuff I have to say… isn’t it? Yes, living with arthritis and my other impairments has its difficulties and I admit that the doctors I have worked with have been of great assistance in providing me with adequate counsel and support. But as I read on about arthritis for my reference, I cannot but frown and get rather, err, sick… because if I take a peak at medical texts with their accounts of how my life should be there’s nothing that would give a prospective client receiving the news that he or she has arthritis the motivation to get out of bed.
True, science and particularly medicine has the duty to improve health and perhaps prolong life. But that doesn’t mean that the medical history that you find scattered all over the net should enlighten you into what living with arthritis means. And I don’t say that I ‘suffer’ from ‘arthritis’. Because I don’t … I have occasions when I do suffer pain but I don’t regard myself as a ‘sufferer’ or an ‘afflicted’ human being!
If you consider medical texts who speak in terms of our ‘suffering’ and ‘afflictions’, or the ‘burden’ of having arthritis, you may understand how dehumanizing such discourse is. And they won’t be talking about an art work here but you, and me!
To be honest, I had a bitter experience recently and I am still shocked by it. Once I went into more detail about my impairments, in this person’s head I suddenly became part of the notorious category of ‘the disabled’ (quoted directly). Which wouldn’t be that bad if being disabled didn’t mean to society as being:
A bunch of people who are faulty and generally uninteresting.
All the same, character dependent on impairment.
To be tolerated not included.
And when do you get disabled people on the media usually? To raise funds for charity or to make people feel happier about themselves… whilst businesses often become sudden benefactors. Not that those funds are not needed but they are needed most often because society has failed us big time! And yet people apparently want to consume this view of disabled people as a social burden, all happy and friendly, or like children…
Whilst thinking of us as an epitome of imperfection, they expect us to be perfect in our attitude to life and in our performance.
If that’s what people want then why argue? The whole issue is that it’s not only a disservice to disabled people to promote such negative or pathetic images of themselves, but it sends out a conflicting message to many.
For how can I be part of society if this same society regards me as a burden? How can I speak of my life without referring to my impairment if society strives to limit who I am by using it as an excuse? Why is my health such an important issue to government, whilst my civil liberties are not? Is not this a travesty of social justice?
TO BE CONTINUED …
Wednesday, October 11, 2006
I’ve often thought of people’s reaction to the claim that one can be proud to be disabled. Not only do people see this as a contradiction in terms but they tend to label you an extremist.
As a young boy, I was taught to ‘accept’ my impairment. But acceptance doesn’t mean that it’s a good thing to be impaired. On the contrary, it usually implies that you must accept your ‘loss’ or status of inferiority and dependence for good. I cannot accept that for sure. At least not any more.
When I state that I’m proud to be disabled I’m stating a politically charged assertion. Indeed, I put into question the very idea that persons who have no impairments are better than myself. I’m not saying that they’re worse off either but that our difference doesn’t necessarily imply social deviance or even evil.
Sure, we hear that disabled people are loved and should be accepted. In the same instance, we are bombarded with regimes that gear towards rehabilitation and also when all else fails, promise of a miracle cure. This can be both a well marketed medical research programme and even a visit to some holy shrine.
In all cases, however, ‘the message is that impairment’ is bad and preferably avoided. No wonder when I had been interviewed for a local newspaper I was described as a youth ‘fighting on in spite of my impairment’. But I encourage you to put into question this very fact…
I believe that impairment is not the cause of the restrictions I face on a daily basis. Granted, sometimes my impairments do give me problems but I don’t call the mayor to intervene when this happens. Like everybody else, I go to the doctor. But then there are choices that I could make if society recognised me as part of it. Taking me into account involves Things like simply ensuring that a meeting is held in an accessible venue, especially when it’s a public meeting. Or putting accessibility into building plans. Or even ensuring that there’s a solid investment in information communication technology in public places. But then I’ve heard non-disabled people speaking of themselves ...pleading their case … I sometimes forget things, or I once broke my leg, or even still I cannot eat certain foods as I’m allergic to them. That makes me disabled, right?
Wrong! Whilst some of you may encounter a mishap or need to watch what you eat, in your daily life, the restriction that people with impairments like myself encounter are constant. I’ve outlined some of these obstacles in earlier blogs, but suffice it to say that the cultural bias that pervades kills the very possibility of thinking of your impairment as a part of you.
So, we have even disabled people themselves wanting to be err... something they cannot be. And unfortunately yet, this ‘hope’ or ‘expectation’ is reinforced all over again by media journalists. We read titles such as:
BRAVE YOUNG MAN SUCCEEDS DESPITE HIS MULTIPLE IMPAIRMENTS
In a short heading, the fact that one is impaired becomes the ‘challenge’. Or something bad that I must fight against. Great! What this basically means then is that of my body about 30 percent is junk. Of course, they won’t say that out loud but what do terms like ‘dysfunctional’, ‘deformed’ or ‘cripple’ actually imply? Not very nice adjectives if you ask me.
But in truth, why cannot people understand that living with impairment wouldn’t be that bad if society accounted for us. Imagine, there’s everywhere accessible, no longer periods staring at the computer screen if you just wanted to listen to a document, no more crammed toilets, no more searching for a suitable pavement for your pram, no more taxes. Ok, the last one is a bit impossible. But you get the picture…
I am who I am because of my impairments, not in spite of them. People who think otherwise do not know anything about me. Undeniably, it gets difficult if society keeps insisting that I should be happy with whatever I am given. Until they find a way to fix me or get rid of me… Where is the fairness here? Is this justice to assume my life is worthless? Is it even true to state that my life would have been better off without my impairments? Who would I be anyway?
If we believe that racism, sexism, homophobia, xenophobia, etc. etc. are wrong, why do we take it for granted that people with impairments are the weaker members of the community? Or that we are less fortunate? A common error that people make is that they think that my impairments are my problems. Bad luck, isn’t it? And even there, what is the problem with my impairments? Are they really the problem? Why is it then so easy for me to navigate and get around at home or the office and it’s hell when I try some other place? Have I changed bodies? The only difference between here and there is that where I live I have an environment that welcomes me whilst in some other place; wheelchair users are just not welcome.
Now call me any name you want, I am proud to be disabled. My impairments are part of me. Denying them would be denying part of me. And that would really be a pity ... take my word for it!
MORE ON DISABILITY PRIDE
Monday, October 09, 2006
I am not about to embark on a sentimental journey opening the doors to my past or anything that is of no concern to the general public. Instead, I’m going to make a point here that might come as a surprise to some people. The fact is that like any other human being, I sometimes wonder about love and whether I’ll find someone that shares this love. It doesn’t really deserve the title of ‘revelation’ but it’s surprising how many people who have never met disabled people regard us as beings that are almost outside the realm of humankind.
I may blame the many fairytales here which have helped to propagate the myth of our ‘alien’ or fairy-like qualities. Elves, dwarves, creatures with weird bodies, blind seers, mutants, evil witches, hunchbacks, goblins, etc. etc.
I can go on and on. But never do we really encounter a person who has an impairment becoming the main protagonist. The hero… or even the Prince or princess in any fairytale or story. And when there is hope for the ‘beast’ to marry his ‘beauty’… what? Yes, magic! The beast cannot remain a beastly creature but is redeemed and now can become a beautiful prince. Very moving, but it doesn’t help my quest for love a single bit. (No I won’t consider major surgery thanks very much!)
I’m tempted to write a story in which it wouldn’t really matter if you were just different from the rest. In which the heroes and heroines do not come out of a dreamlike world that does not really exist but are ordinary decent folk. In which the evil may or may not be beautiful and charming. In which having an impairment didn’t mean that a spell has been cast on you and once you prove yourself (usually you’re rewarded for being a good boy or girl) you become well, perfect …
… And I’d call it a happy ending if it weren’t for the fact that year after year the story inadvertently repeats itself. The image of evil and wickedness is the ‘deformed crippled’ creature who spends his or her time planning the destruction of the beautiful world of the others. And aside from sexist tendencies in these fairytales, I can only cringe when and if a 4 year old asks me whether an evil witch cast me a spell.
Perhaps a witch did cast that spell, but not on me on the world around me. But that’s another matter. Quite spooky but too real I’m afraid! But to back my attempt at finding well, love …
The verses I write in the privacy of my own home … my essential feelings of attraction and of fondness … and my quest for love that has been at the core of human passion for centuries … all this means something for sure doesn’t it? And yet the myth persists that if you’re a wheelchair user you shouldn’t think of such things or I’ve even heard people say that blind people cannot love because they cannot see. Or that when there are differences in communication love is not possible. And perhaps most shocking … that love requires a degree of intelligence. So people with intellectual impairments are cast off as angels or eternal children.
These all myths and dangerous spells that are not the creation of a wicked witch residing in an inaccessible abode (unless she’s not society living in the world). These spells are the thoughts and prejudices that kill the very heart of our humanity by denying us one of the greatest rights of being. The right to be considered loving human beings. Not shadows of our friends, or burdens to our families. Not even puppets that need cheering up. But social beings who amongst other things have the need for love and companionship.
Now I vanish till we meet next time.
Sunday, October 08, 2006
Today I am going to talk about another important reason why we’re not special people. At least not in the way some even within professional circles refer to us. I won’t beat about the bush, we’re born to be impaired. That’s the order of things in nature and nobody can do anything about it.
I’ll track back a little. In nature you don’t usually find animals that use wheelchairs, or animals that use screen reading software. For all intents and purposes, the rule is survival of the fittest. An idea that was popularised through Charles Darwin, although not his own idea. But you get the point, unless the change benefits survival, creatures that cannot make it simply die or are killed off by predators. That’s another reason why members of a community who appear different, such as the very young or old, are usually the first to be spotted by predators.
However, although this may be part of nature, should we use this as a rule to form public policy or our society? And how far should we take it?
The eugenic movement got its ideas clear. Anyone who in any way does not conform to its ‘model’ of a human being will impact negatively the human race and the population. Solution? Either death or sterilisation.
I would calmly sip my orange juice (if only I had one) and remain impassionate at that statement. But what this social Darwinism, its correct term, is saying is that being a valid human being entails a number of physiological or intellectual criteria. And that leaves me, well, a failure on two criteria:
Whilst I don’t like failing tests, this assessment has serious implications for me as a person. In crude terms, this judgement reduces my entire life to a diagnosis based entirely on an idea of what a ‘healthy’ 24 year old should be like. Putting it like that might seem over-simplifying matters. But isn’t labelling and giving ‘objective’ names to who I am also over-simplifying matters?
Many so-called ‘professionals’ implicitly relate impairment with negative value. So we get the very flattering and positive terms like ‘dysfunctional’, ‘abnormal’, ‘deformed’ and ‘deviant’. Although I understand that to guide someone you need to name what you think may help you develop a strategy, these terms are far from neutral. By the way, these terms can be used to refer to me and some were used in my presence whilst talking about me …
So indirectly, policy discourages impairment (amongst other things) because it is perceived as undesirable. But who then does the policy that we’re talking about actually benefit? I will try to bring down the myth that making inclusion mandatory will benefit the ‘us’ or people with impairment. But first, we have to look at the policy that is built for a ‘healthy’ society, and I have to start an assessment test of course.
FOUR HOURS LATER…
Given that I used ‘health’ as my judging criteria, I can announce the people who’ve passed my test. As examiner I obviously cannot be tested. So here I go:
ADULTS BETWEEN THE AGES OF 20-50 with no history of MEDICAL CONDITIONS or who have IMPAIRMENTS or are PREGNANT have passed the test!
In other words, my results indicate that some of you reading this are not eligible to have rights because you fall out of the criteria that I have set. Sorry, please try again … better luck perhaps in another life …
I don’t mean to be overly simplistic, but in truth if you consider that babies are dependant on adults for a considerable period of time and that as a general rule adults over 50 start acquiring impairments, the reality is:
WE ARE BORN TO BE IMPAIRED …
And if it’s not an accident, or a disease, or like myself birth and medical reasons, the fact remains that impairment is something that is quite well, err…, normal really. But it’s only a fraction of our population that actually benefits from the current social structures. Unfortunately, some cling to their dream of a perfect world imbued with ideal order. And they fail to recognise that this is not only impossible but elitist. So why isn’t the truth regarding impairment as a fact in human life so eluding?
Mainly because we have institutions and bad pavements or inaccessible facilities. Added to that the idea that people with impairments or who are considered ‘unacceptable’ in the eyes of society are deemed less human.
So there! You see? The fact of human life is that we’re born to be impaired … there’s nothing essentially tragic or sad about it! It’s part of our mundane and everyday life.
Saturday, October 07, 2006
I’ve finally received my results and shall proceed to the next year of my studies. But it’ll be a tough year… but of course, I should continue blogging anyway, shouldn’t I?
I have received some email regarding my blog which is encouraging. At least people are reading!
Speaking of which, Michael McCarty has posted yesterday’s blog on his blog database… which I should say is an impressive undertaking. It contains lots of material with particular interest to blind and visually impaired persons.
FRED’S HEAD COMPANION
The site offers many resources and is managed by the American Printing House for the Blind. People may also listen to my blog there as there’s a link that might give people a rough idea of how text-to-speech works on my computer.
It’s quite exciting to realise that right at this moment millions around the world are reading this blog. Ok, I meant surfing the net… But it’s also quite an unsettling thought if you think about it. Like every invention, the internet is neutral and can be used as a weapon or as a tool. Hopefully, many of you utilise it as the latter.
I am particularly disturbed by the fact that there is no actual thing that can verify the truth of what is online. True, the net reflects our world in many ways. It gives voices to people and creates networks. But it remains essentially a world within a world.
Let’s take me writing this for an example. For all you know I may be not the person I am putting myself across as being. So there’s some trust that must go into the equation.
Think about it! A world with no obstacles, no problems of belonging, no need to struggle to get a service… etc. etc. Perfect! But then what will we be missing?
I’d miss being with the friends I have. Or just being in contact with someone else. Let’s face it, even if there are many different people on the net right now, the only way you’ll know them is from a distance or from the medium you are reading about them.
To stretch it further, aren’t scientists who check DNA of embryos just scrutinising a code that has no real grounding on the person being studied? Aren’t doing not the same thing when we lump people together as if we are understanding what it means to be that ‘other’?
Perhaps a more personal dilemma, would my impairments exist for you if I hadn’t mentioned them? I know that we say we’re living in a global village but perhaps the fact is that it may be somewhat more revealing. We may be creating a smaller world, yes, but it may be that it’s the world within us that is expanding. I guess all this puts into perspective our reality. For it should follow that the world inside that counts… so why then are certain people viewed better than others?
I shall sleep on it …
Thursday, October 05, 2006
It’s now about 3 years since I looked at myself in the mirror. But because I have now a visual impairment, I don’t know exactly how I look on the outside. I know that I have left my hair to grow long and unless I have mutated my eyes remain brown. But apart from that, I’m sure there are changes that I’m unaware of.
But what about the inside? There I notice so many changes that I sometimes really am surprised when I read things I’ve written some time ago on my computer. For instance, I know longer feel that being different or a wheelchair user with low vision is something that I shouldn’t be proud of.
After all, it’s now part of who I am. And if things should change or my eyesight improves I’m still the same person inside. But would I rather be ‘normal’? Would I wish my impairments on someone else?
These questions have troubled me since I was younger and became more pressing as I got my extra impairment. The intention people put these questions is usually to demonstrate that in reality there is an ideal human being who has all body parts in good working order and that both communication and intelligence are intact. Some years ago, I would have agreed that people who couldn’t walk were in some ways less fortunate than others. And to think that I myself had walking difficulties does make me wonder…
In truth, the reality of my impairments has served to open up a new world and was a learning experience. It still is. The sad thing is that people who do not have impairments assume that I should be really unhappy with myself for being so, well, ‘faulty’. And to confess, I do get very annoyed when these people are the first to talk on TV programmes that only aim to cause emotional reactions.
People may find it crazy if I tell them I’m proud to be disabled. Why? Because I have learned to do new things and got to explore myself in more ways than I ever thought possible. Except for the physical pain, being impaired can mean finding yourself again. For in fact, what people see on the outside is nothing more than an image.
A Deaf friend of mine recently told me how he agreed with me when I stated that other people see people with impairments as either ‘poor’ or ‘unfortunate’ creatures. None of such people considers that signing instead of talking, or wheeling around instead of walking or even hearing text instead of reading it are all different ways of expressing one’s humanity.
Would I wish my impairment on others then? I would put another question: would you have chosen to be black or white, tall or short, black or blue eyed? The answers are that this is all hypothetical stuff. I believe we should find value in who we are regardless what labels society might wish to ascribe to us. Besides, many disabled people may find themselves unhappy mainly because they are excluded from society and not because they have impairments. To me, that was a revelation to say the least.
There may come a time when my vision improves through surgery, but I feel that there is something that is inside that will continue changing and developing further. Until people realise that the life of disabled people like myself (even if it appears foreign or alien) is part of society and reality, our structures will still brand us as outcasts. True, I can no longer see my image in the mirror on the wall. But my vision of life and society is increasing and maturing.
Tuesday, October 03, 2006
I really should be upbeat today as things are improving in my life. even though my exam results have not come in yet ( so I’m a bit anxious).
LAB TO SSELL HUMAN EMBRYONIC STEM CELLS
I was reading how a lab in Scotland is selling human embryo stem cells to be used for research. The arguments brought forward is that this will ensure that research to produce cures and treatments is facilitated without the problems associated with patenting and other things usually associated with inventions. Technically, I can order a number of stem cells to do whatever I like with them.
There are of course people who argue that an embryo is a bunch of cells. I beg to differ. If it were not for that ‘bunch of cells’, all of us would not be here! And I feel that placing a price on human life is none other than a more clinical form of ‘slavery’, or even downright human experimentation.
And this is always the argument isn't it? - To build a world without disease or anything that we deem to fall out of the ‘normal’ bounds as established by the medical paradigm. But in truth, not only is the vision of a perfect world unattainable and unrealistic, but it also kills the very essence of what makes us human. Our differences and adaptability to the changing environment.
If I had to believe the many people who said I couldn’t succeed because I had an impairment, or because things had changed, I would not be here writing this. The truth is that we must look at how we are indeed creating the obstacles to the inclusion of different people and to their quality of life.
Unfortunately, economics has been the driving force behind policy and legislation over the past few years I have been following the field of policy. This trend is worrying for many reasons but mainly because it poses us with a choice between supposed material progress and human progress in the real sense. Or in other words, between an ideal society built on 'perfection' and the recognition of our life regardless of anything else. For I believe that if one life is lost for the benefit of many, we would be sacrificing far deal more than what we might have gained. If nothing, we would have lost someone who would have made a difference to other people's lives. Or the future. Or even simply changed your mood or perspective of the world.
Monday, October 02, 2006
This is not the real title of my poem but it surely grabbed your attention didn’t it? Since yesterday, I’ve been starting again my winter routine – even if it’s still autumn. And now I find that I have really changed since last year. For starters, I’m almost a year older… but some things do stay the same.
For instance, yesterday I felt I had to write a poem that is about love and desire. And of all the mythical creatures that I could equate these themes with was none other than the mythical fire bird known as the phoenix. The peculiarity of this bird is that it was thought to reproduce itself through its self-sacrifice by burning itself. And I think this is very similar to what happens to our desire for love. It burns us and is recreating us with each flame. Well, I wrote this late at night before I got to sleep. And yes, I did have a good night’s sleep if you’re wondering. I cannot get to sleep sometimes if there's unfinished business. And sometimes this means sacrificing one hour sleep… Anyway, here’s the poem:
I linger on in my silence,
As I contemplate overpowering desire.
The day is pale and my mind knows not,
What this fleeting passion will lead me to.
The heart takes over and does burn:
All past and futures…
Into mere ashes!
No time to think as life flashes like a dream,
And abruptly turns all reason.
Inverting the old order for a greater love.
And as this fiery flame rages out its energy,
Still it does not die!
For as soon as it is extinguished, a bird sets forth to fly,
To haunt me with its ever-growing longing –
But only to start its incandescent ritual. Again.
Ravaging my heart and soul leaving but ashes.
As it warms my spirit with its everlasting light.
That speaks untold desires. And changes me.
So that I burn and die repeatedly in its faceless gaze,
To be born again like a rising phoenix.
READ ABOUT THE MYTH OF THE PHOENIX
Sunday, October 01, 2006
There have been many things going on during the almost finished weekend. Most of these goings on, however, occurred in my mind. I think this is something all of us experience. Thinking of the past, of old memories or even dreaming of a future that is not yet here. And as I was surfing the net, I found a Buddhist exercise that really put things into perspective.
As I have been interested in different spiritual traditions when I was a teenager, I was surprised to get to know of this simple exercise. So here it goes…
Imagine that you knew for certain that today was your last day of life. Let’s also hope that you were lucky (or unlucky?) enough to get to know of this when you wake up. What would you do?
Would the past really matter that much any more as you know that it will soon be over?
Would the future be that important now you know it will soon end?
There are people who would go insofar as stating they would do all the things they had always wanted to do, or spend all their life savings, etc. etc. To put things into perspective, however, this day will come and death will happen. Hopefully not today or any day soon. But it will happen.
I am no stranger to death as I was very close to my rendezvous in the summer of 1999. But this is only a memory in my past and I moved on. But then again, should our past be that important? Or the future for that matter?
The answer that the Buddhist traditions would give is that for all intents and purposes, we live in the ‘now’. Although I am not advocating any following of any spiritual tradition here, it is food for thought if you consider that at the basis of every spiritual tradition there is a realisation to be aware of the present as the only moment we have real control over.
Unfortunately, for the sake of preserving some kind of ‘holy order’, the reality of the illusion of the past or future is sacrificed for the establishment of a reality that only exists in our minds.
That is why perhaps I have reacted against people who have referred to me in terms that not only reduce my humanity but also devalue me as a person. In fact, people with impairments are one group of people who ‘suffer’ from the past prejudices and are frequently promised unattainable future cures.
But many non-disabled people still believe that if one has an impairment, one cannot be happy. If you google the words ‘impairment’ or such specific terms like ‘cerebral palsy’ (one of my impairments), you’ll surely be in on for a treat if you like De Sade. There, I should be ‘afflicted by’, ‘suffering from’ or even ‘plagued by’ cerebral palsy. And medical texts are full of such allegedly objective terminology…
I’m not saying that my impairment is totally pain-free. But I’m not going through daily pain or torment. I mean I have a life! And I also made a personal decision not to spend my waking hours doing physiotherapy or even ‘art’ therapy. I work, study, and try to hang out with people.
But it’s not just a matter of being deemed a subject that worries me but it’s also when I’m perceived as an object. Here we go into the other extreme of reading my life as if it was a holy pilgrimage or my image as representing a means for other’s salvation. I shudder to wheel into a hall full of religious devotees for the simple reason that I’m something (yes something) that ‘inspires’ them and gives a purpose to their work. I don’t mean to put down any religion here but being talked about as a ‘weaker member’ of the community or as a ‘less fortunate’ person doesn’t make me feel welcome in the least. and that is if you also consider that people from the old school still regard people with impairments as ‘angels’ sends shivers down my spine.
I have to tackle all this over and over again as it’s like a silent sentence that gets repeated in my present life. But undeniably, the fact that many less fortunate people miss out is that this is who I am now. If society wishes to dream on a time when there are no more people with impairments, it’s either kidding itself or preparing for my execution.
For it is now that we can change our country or our world. The future is but not there yet and the past is but a closed book we may refer to for guidance. But yet, they are the only foundations we build upon.
Now I can really go and rest in peace. Well, at least till another day starts …
Friday, September 29, 2006
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
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
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:
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
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
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
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
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!
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
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