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

Sunday, November 25, 2012

The Akwarell Speech: A Message on Independence, Hope and Thanksgiving



Opening Statements

A photo of me taken by one of my brothers, Daniel,  during the inaugaration of Akwarell.

Welcome your excellencies, members of parliament, distinguished guests, family and friends and all those of you who came to celebrate this occasion.

An occasion so important in my life and in the life of my other friends who will be joining me in this new experience...

Today, we are here to celebrate the official opening of our new home, Akwarell*.

To mark this occasion, I wish to share some of my thoughts about what this means to me.

About Community...


At present, Akwarell is just a building. But, I hope, together with my friends, we will turn this building into a home, in the best senses of the word. I think that the name we have chosen for this house: 'Akwarell', expresses how we want this home to be a place to express who we are both as individuals and as a community.

Indeed, in the same way an artist would paint the akwarel, we hope this building will serve us to express our best colours but, at the same time, create something that we could only create with one another. A community of friends.

About independence


However, what Akwarell means goes even beyond that. Akwarell is a place where we can be more independent. Here, it's important to explain what I mean by independence.

Independence does NOT mean we will do everything on our own. Independence does NOT mean we don't need anybody any longer. Independence means being able to make our own choices. Independence means having the necessary help and support to fulfil our full potential. And, in truth, no one in society can live on his/her own. We all need each other in life.


Concluding Remarks


There are many people whom we must thank for making all this possible, each in our different way.

For my part I must thank my parents and all my family, my friends and my work-mates at KNPD. If it hadn't been for all of you, I would not be here today.

However, today was only possible because of the work carried out by pioneers such as Mons Azzopardi who wanted to give us, disabled people, back our life and dignity. Mons Azzopardi who also helped change the Church's approach to disability from a question of false charity to one of social responsibility. I must also thank those who followed in his footsteps at Id-Dar tal-Providenza, Mons. Gatt and Fr Martin Micallef.

I think that my friends who will be moving in Akwarell in the coming days will agree with me when I say that we are indebted to all those of you who continue to help and support us to achieve the best possible quality of life.
I trust in your continued support.

Thank you all!

Have a good day...

Footnotes

As explained in my last entry Meditations in Watercolor, last Thursday, I participated in an activity to inaugurate the official opening of our new home at Qawra. I explained how I was asked to be one of the speakers for the occasion - especially since I‚ll be one of the ones who will be living there for the forthcoming future. Since some have expressed the wish to get an idea of what my speech was about, I have decided to share the text I used as a guide in document for my speech. Incidentally, I would later discover that November 22 was also Thanksgiving in the US, so it‚Äôs a speech appropriate to mark such a day - which was, in a sense, an occasion of expressing my thanks and gratitude for the opportunity to live more independently.

*The word "Akwarell" is the Maltese word meaning "water-colour painting".

Thursday, November 22, 2012

A Post on Watercolours?

Today, I participated in the official opening of a new building which I hope will be my new home for the coming future. This house, which is supported by the Church with some help from the state, will offer me to live more independently and share my experience with two other disabled mates. I hope that this will help me express who I am and my potential to its fullest. However, I have already written a post on my other blog at ZoneMind entitled Meditations in Watercolours… 

 

I hope, of course, to be able to contribute more to the D-ZONE but these last few days have been a bit emotional and I’ve still got to make the last plans as I spend my last weekend at my childhood home.

 

I’m sure that, even if it’ll be hard for me to leave Paola, where there’s my childhood home, I trust that my new place at Qawra will help me grow and make new experiences and friends. 

 

I’ll be posting the entry to ZoneMind  later next week. But, if you can’t wait and want to read some personal reflections on my mve, just visit the post Meditations in Watercolours… now!

 

Enjoy!

Friday, November 02, 2012

My Vote: No Secret!

Voting trends around the world seem to indicate a decline in the voting rate of citizens. Even if one cannot generalise, EU countries appear to show a consistent decline in voting rates, especially amongst younger voters. Concurrently, rise in unemployment and the decrease in standard of living has increased the support of far right extremists.

Here, I won’t go into detail about what may be causing this disenchantment with the political system. While in Malta (where I live), voting trends remain relatively high, I expect that the next general election will show a decrease in the number of voters - probably from younger voters, I don’t expect any radical changes in local voting trends.

However, it is the very fact that people are less confident in politics to achieve social change that should be worrying politicians. For, even if the modern democratic system is far from perfect, a vote is a way that a citizen can have his/her say in the running of the country. This isn’t saying that the democratic process cannot lead to horrendous results but, at least, it should give everyone a chance to participate in the operation of the state.

The importance of participating in the electoral process cannot be emphasised enough. Especially if you consider how this democratic process has evolved from a right only available to elite men in ancient Greece and eventually extending to all citizens under the law. Thus, when I hear that someone is either going to waste his vote or not bother to vote in the first place, I realise how much we have taken the right to vote for granted as people around the world are still denied this important right and even dying for it.

For, in spite of its limitations, the democratic process may be the only chance for many to make a statement about who they wish to be governed by. The act of voting provides you with the opportunity to do something to change the things you don’t like, or else, to express your trust and confidence in the current administration. Perhaps, more importantly, it is an agreement between you and the state, and, thus, there are situations when it can be denied you. More importantly, as history reveals, the vote is not a given and the wrong` government may revoke this right. This isn’t implying that this would be fair or just but that it has happened before in other countries.

I really started appreciating my right to vote around nine years ago, when due to my vision loss, I realised that I was having problems reading the ballot paper. Back then, a magnifying lens did help me but now I don’t risk to invalidate my vote by attempting to fill in the ballot paper. Since Malta has ratified the UN Convention Rights of Disabled Persons (UNCHRPD), I hope that the state of affairs changes by the next election or, at least, the very next.

To this day, a good number of disabled people having different impairments who cannot use the conventional means of pencil and paper to vote are forced to choose voting in front of an electoral commission composed of representatives from every party contesting the given election.

I was forced to go through the electoral commission for these past elections with a certain sense of hesitation. For, even if the four or five overseeing commissioners are bound by an oath of confidentiality, they know how I voted back then.

And if the state doesn’t change the electoral process in such a way that people in my situation can really have a secret vote, then I remain unequal and my vote an open secret - if there is such a thing.

I don’t find any problems with making my position heard. I only fear those who may use it against me. I want, at the end of the day, have the same right to privacy.



For, apart from being my constitutional right as a Maltese citizen to have a secret vote, it is also forms part of my duties as a citizen.

Sunday, October 14, 2012

Hurray! Malta ratifies the UN Convention Rights of Persons with Disabilities (UNCRPD)!

 

This morning, I was pleased to read a press release confirming that the Maltese cabinet had approved the ratification of the UN Convention Rights of Persons with Disabilities (UNCRPD). As explained in this press release issued by the National Commission Persons with Disability (KNPD).
 
The ratification doesn’t mean that we should pat ourselves on the back (if we can) but does augur well for all Maltese disabled people and all those who acquire an impairment during their life or because of old age. In this sense, while this IS a moment to celebrate this occasion, we must work together as disabled and non-disabled people to ensure that all of us have equal access to the same human rights.
 
For, at the end of the day, the UNCRPD isn’t as some may interpret it, a ‘Convention for Disabled People’ that entitles us to any privileges or ‘special rights’. Rather it provides our governments and all of us with a set of guidelines that ensure we actually have equal access to the same  human rights which every human being should be entitled to. Rights, I believe, have been denied us out of inconsideration, exclusion or outright prejudice.
 
It’s certainly positive that, as Maltese citizens, we can - once the UN approves Malta’s ratification - we can lay claims to human rights as any other person without the risk of being marginalised or denied the right to make our voices heard. However, I appeal to every disabled Maltese citizen and to our allies across our society to be ready to help in implementing these rights in time. This should never be a dialogue based and ‘we’ and ‘them’ but rather a dialogue based on an understanding that ‘we’ are all together in this journey in securing our own futures and that of future generations.
 
My appeal is thus to everyone in our society to join in the spirit of human rights as these affect all of us - irrespective of any differences we might have amongst ourselves. 
I also appeal to all disabled people and allies NOT to take the rights affirmed in the UNCRPD for granted or to abuse them or, worse still, abusing them to make unreasonable demands or make claims to benefits or services that are unjustified and which go against the principles set out in the UN Convention Rights with Disabilities (UNCRPD)).
 
Yes, in some countries, our human rights have been forgotten for far too long. Yet, we must keep in mind that rights come with a degree of responsibility. Thus, we should never use the tools provided us by the UNCRPD capriciously as that would be an insult to all the disabled people and our organisations, to  our allies and all the stakeholders, who made this groundbreaking Convention possible in the first place!
 
 It is also true that Malta's ratification of the UNCRPD -binds the government to honour the UNCRPD and we should hold it accountable for its implementation and progressive realisation. On the other hand, as disabled people, or allies to disabled people, we should not expect the government to do all the work while we stay passive observers who only intervening when we]re personally affected by some form of discrimination or are subject to unequal treatment. Indeed, we should take ownership of this Convention and appreciate the fact that apart from affirming our individual human rights, it is also emphasising that we should seek unity in our struggle in being accepted as equals irrespective of any differences we may have which, in truth, should be celebratedd as part of our human diversity and universal heritage!

Tuesday, October 02, 2012

The Myths of independence and the Self-Made Person

As I try to figure out what is the matter with my laptop, I realise how much I have become dependent on technology in my daily life. Indeed, one may say that I might be more dependent than other people on technology, especially information technology due to my physical and visual impairments. I realise that if I had just been born just 40 years ago, much of what I have today would have been unthinkable. 

It’s sad but true, but I would probably be staring at the wall waiting for the time to pass, forgotten perhaps, in some institution with no hope of release. And, yes, today I would be 71 today. OK, given that medical treatment to treat my condition were only just being experimented, I would probably be dead. Six feet under. Caput! Finis. Indeed, if it hadn’t been for technological progress (here I’m including medical discoveries) and reform in the socio-political landscape, my current life wouldn’t just be impossible but inconceivable.

I used to believe once in the fairy tale of the self-made individual. A person who goes from being a pauper to a prince, from rags to riches… You get the picture. But even the great “geniuses” of history that we, including self, have thought to have achieved what they have out of sheer will or determination had lots and lots of help and opportunities that allowed them to reach their peak.

However, we tend to mythologise the lives of these so-called “geniuses” and, perhaps conveniently, forget that they had access to opportunities that improved their chances of success.

Don’t get me wrong, I am not denying that such individuals did nothing. In fact, they have developed extraordinary skills and abilities. But to assume that they were born with special abilities would be stuff of fantasy and Hollywood movies. Yes, people may be born with a predisposition to excel in music, science or the arts, for example, if they are not exposed to the right stimuli or in an environment that cultivates their minds, they would not manifest anything.

What if Mozart had been born in a poor family where children had to work the hard way and there was simply no place for music as this wouldn’t contribute to thee livelihood of the family? What if Einstein was born in a part of India where the poverty was so pervasive that the only maths and physics necessary were to calculate how much money you can spend and whether you can balance your food or water to reach home - if you have one that is.


My point is simply that it would be false to believe that individuals can make it on their own. There were many factors, often omitted from biographies, that contributed if not made it possible for people to maximise their potential. This myth of independence and independent actualisation is particularly dangerous when applied to disabled people. I don’t know how many times I was praised for my resolve and determination to go on with life. While my choices had a certain influence on my current position, I would be pretentious and ‘full of it’ if I declared I did it all on my own. Indeed, people with impairments, like myself, may need more help and support to maximise their potential. Will and determination have only a little part to play in all this. If you have a choice but do not know you have one in the first place, it is unlikely that you will take it.


That’s why I believe that we should recognise that the idea of complete independence is but a myth. No one can make it on his or her own in modern society. I also think that we must refrain from mythifying the lives of others just because we think they “have beaten all odds”. Instead, we should be asking why haven’t more people experiencing the same conditions and situations failed to improve on their lives. Is the myth of independent autonomy, as we may call it, a way to rationalise the injustices of poverty and inequality? Are these our way to deny responsibility for the welfare of the whole of society not just those we deem ‘deserving’.

And, I believe, we shouldn’t start pointing at our leaders, our politicians, or those in authority, but first ask ourselves what we are doing ourselves. And, many times, this means distancing ourselves from our own affiliations, biases, prejudices and assumptions and start to treat each other with equal respect and dignity as any other human being.


Yes, I should start with my own life.

Saturday, September 29, 2012

Disability & Work: A Few Concerns

I’m sorry if I neglected to update this blog for some time. The truth is that I am currently doing much of my blog writing on my other blogs. And, besides a number of things that are happening in my life, there’s of course that four-letter word: work.

Don’t get me wrong, I like to work. It gives me a degree of financial independence and sense of dignity. And, in case any of my employers are reading this entry, thank you very much… But, enough of that. As I’m enjoying this pleasant day, I thought to type a few thoughts about work. More specifically, I’ve asked myself whether there’s a contradiction that today disabled people, like myself, are working.

Yet, even if it’s true that I’m currently employed, the fact is with the economic recession still affecting the job market, having a job isn’t always guarantee. In fact, with the employment rate falling across the globe, work is becoming more precious. And there’s when I start to reflect and find, at the end, that there;s a sense of fear. A fear that there’ll come one day when we return to a society where only a select few are deemed entitled to work.

And I know that I shudder when I think whom society might choose to form part of this elite group. I fear that we might return to a time when our decisions are based on prejudice rather than reasoned argument. Let us not forget that women, for instance, have for much time since the industrial revolution been excluded from many occupations for the simple fact that they were female and deemed incapable of doing nothing more than care, teach, nurture or be mothers.

However, different factors have been instrumental in excluding people like me, who have impairments but, indeed, have been denied access to work because the very structure and organisation of the work place only accommodate a a subjective ‘norm’ of physical, sensory, psychological and intellectual abilities. One can’t deny that work itself, with its emphasis on productivity and efficiency, has to remain - to an extent exclusive. However, back then we were never given a chance to prove ourselves as the very nature of work was designed without us in mind.

Then, there is that demon of xenophobia which manifests in nationalism, racism, and any form of human living that fails to conform with the accepted social norm or national/religious/cultural identity. Difference becomes a threat. First, by becoming simply a threat to our jobs and our livelihood and then becoming a threat to our whole nation. Unfortunately, fear of strangers becomes imbued with hate, intolerance and injustice leading, of course, to violence.

Yes, I am employed. I have gained a degree of independence and find a sense of worth in my life. Yet, a looming global recession keeps gnawing at the job market leading to more people finding they have no jobs. And, in a sense, as we tend to wrongly define in terms of work, some end up without a purpose to live. And, they commit suicide. And, then, how can I guarantee that my work will be secure in the coming years?

When they are saying that people who are black and who may be coming from other cultural backgrounds should be returned back and should certainly as some have put it ‘take away our jobs’?

When some employers still perceive people like me as a burden that they are only being forced to bear?

When some have become so convinced they’re the only ones entitled to work that they’re ready to do anything to eradicate difference?

When we don’t appear to find more humane solutions to the plight of refugees and persist in confining them to detention centres which are not that different than concentration camps?

When disabled people across Europe are still being institutionalised and forgotten from the rest of society?

These are some of the questions we need to ask ourselves today. We cannot risk to a society which denies the possibility our differences can offer. We must make the best use of our human potential in all its diversity.

Tuesday, September 04, 2012

ZoneMind: The Wisdom of Pearls

ZoneMind: The Wisdom of Pearls: Pearls remain one of the most valued objects today with the smallest costing from a few hundred dollars to ones costing up to thousands. The...

Monday, August 27, 2012

6 Years of Blogging on the D-Zone...

I am compelled to write a post today because during this time around six years ago, I started blogging in earnest The other reason, of course, is that I’ll be working at the office tomorrow… 

 

But I digress... 

 

The fact is that Gordon’s D-Zone, the name I would agree on, came to be on that Tuesday 28th August of 2006! Eventually, this blog would form part of other blogs ranging from the more expressive such as Zyhil which I shut down and ones where I showcase my attempt at a book at Cosmos Online

 

The blogging experience for me has made it possible to express myself using the medium I am more comfortable with, writing. I have also tried my hand at recording podcasts and short clips for YouTube, but I know there’s still much to improve there. Blogging is a way of reaching out to the world in a way that wouldn’t have been possible just 20 years ago. Yes, the fact that over the years I acquired a visual impairment in addition to my physical impairment did further motivate me to expand and eventually set up gordonGD.com where people can easily access all of my blogs.

 

However, over the last year, I have   been forced to take a fresh look at my life and return to the basic questions about life and death I’ve been asking as a child which I tried to answer by working on the book Cosmos. This ‘search for meaning’, if you may, compelled me to re-examine Buddhism which I had briefly explored as a teenager. In effect, my current engagement with Buddhist thought and practice has changed me on a deeper level. Needless to say, as you may have realised, this new outlook on life has also affected my approach to disability activism.

 

Having said that, even if my outlook on life has significantly changed since embracing a Buddhist perspective, I wanted Gordon’s D-Zone to remain more specific and here I will continue to focus on issues that are directly or indirectly related to disability issues. Therefore, that is the reason I created the blog ZoneMind where I recently finished my 100th entry and that is why I decided to replace my previous literary blog Zyhil with one containing poetry written in the Japanese haiku, HaikuFlow

 

I will end this lengthy entry by hoping that I’ll continue to contribute to this blog with the same motivation I had when writing that first entry I entitled ‘A New Blog is Born…’ which, I learn, isn’t a very original way to start a new blog. But there, you’ve read to the end of this entry….

Monday, July 30, 2012

Inclusion: Child's Play?

Yesterday, I had the opportunity to meet my nephews after a long time. Since my sister lives abroad, I don't get to see my nephews that often and it's usually during the holidays and festive occasions that I catch up with their progress. Its always a pleasure to see how they have grown. I may notice the changes more because there would be a long time gap since I last saw them.

However, I like to know what they've been up to and learn of their progress in school and life in general. While they're ware that, on a physical level, I am different, the fact that I'm a wheelchair user doesn't bother them at all. In this sense, they accept the fact they have a disabled uncle. This relieves me from having to show them that I can still live a fulfilling life. It spares me of that awkwardness I feel when I meet some people who remain convinced that I must have a miserable life!!!



Indeed, every time we meet, I can trust that adults especially and children who were never exposed to disability tend to be ill at ease when they encounter a disabled people. It appears as if they perceived a reality dominated by misconceptions that relegate our lives as constant suffering.

Another thing that I sort of enjoyed the fact that my nephews fought to drive my power chair as I prefer to use an office chair indoors. I must say that they got the hang of manoeuvring my power chair fairly quickly. Yes, as an uncle, I advised them to be careful and keep the speed on the lowest setting. On the other hand, I didn't want to be too strict and prohibit them from using it. Of course, a wheelchair isn't, strictly speaking, a toy but it's neither untouchable or lacking fun in its use!

Rather, it's a source of empowerment and a means of achieving greater independent mobility. And while some may find a wheelchair to be oppressive, to me and other wheelchair users, it can be a means to claim our autonomy.

While laws may indeed help to address the injustice of disability, often inclusion and early exposure to difference can go a long way to address prejudice and misconceptions that exist about us - disabled people!!!

Sunday, July 15, 2012

Assisted living - not assisting dying (Newspaper Article)

In this article, I wish to share my concerns about a growing movement abroad advocating for the ‘right-to-die” since I am aware that this movement is also gaining support in Malta. I feel that, as a disabled person, the popular tendency has been to speak on such a delicate matter in highly emotional terms. This is perfectly understandable considering that it concerns people’s lives. Having said that, I feel that it is also important to be aware of the implications of making assisted suicide legal.

I confess that during particular periods in my life, when I felt excruciating pain coupled with a deep feeling of isolation, I did consider suicide. Indeed, had I had the choice to end my life during those trying times, I am not really sure whether I would have chosen to die there and then if I had the legal right to request assistance to die. After all, my wishes to die would have appeared justifiable, considering that I had become more dependent on my family for support and my quality of life had deteriorated. Shouldn’t I have the right to decide on how I live or die?

It is this point that lies at the heart of those who argue for the right to die. A right, they claim, that provides people with empowerment and is based on the principles of free will and self-determination. Even if they admit that such a right may be abused by close relatives to be freed from hardship, they insist that if this right is carefully regulated, it empowers people to be in full control of their lives. But is the choice to end one’s life really a free choice? Supporters of the right-to-die would argue in favour of assisted suicide by contrasting it with euthanasia where it is an imposed decision whereas assisted suicide is a voluntary choice.

However, I contest the belief that a decision to end one’s life can be truly a free one considering the various factors that influence us to take such a drastic and irreversible decision. Indeed, there may be many factors that lead people to conclude that their life is not worth living any more. In my case, the intense physical pain was unbearable at times. I was also aware that I was making the life of my family and those who supported me difficult. My quality of life had been reduced as well. I perceived my very existence to be a burden on society. Yet, I did find the continued support of my family and local agencies (such as KNPD, FITA and Agenzija Sapport) that provided me with alternatives to go on living and my value as a person. My life had to change as well. Today, I use a power wheelchair to get around. I use a screen reader to work on my computer and to access the Internet. I have a personal assistant when I need one. In this sense, even though I had given up the dream of coming first in the New York marathon (smile), I found that I could do things I had done before – only differently. I dare say that I am doing much, much more than I ever imagined I could previously do.

Yet, contrary to popular belief, I don’t have any extraordinary courage or determination to continue living. The fact of the matter is that I am able to say that I enjoy a relatively good standard of living because I found support and assistance of others in society who valued me as a person. In other words, I discovered there are alternative ways to live a fulfilling life. With a society that tends to portray people like me as ‘less fortunate’ or even ‘tragic’, I shudder to think what people in my position who are unaware of the possibilities would do if they were given the option of choosing to die when they could find no value in their life as it was. Thus, I fear that an ethic based on a right to die risks denying us from exploring alternative solutions and possibilities even when all appears hopeless. Indeed, our right to live might be sacrificed because our need to continue living may indeed become seen as a ‘selfish’ decision because we would be imposing a burden not just on our families but on society if we demand to go on living.

One might think that I am painting a bleak picture of a future where the right-to-die becomes legal. However, in the light of the global economic recession, I am painfully aware that people are increasingly reducing human life to their economic value. A case in point is our perception of illegal immigrants entering our country as being an economic burden. While it is not the scope of this article to tackle the issues related to illegal immigration, it is worthwhile considering that some perceive people who come from foreign places as being an unnecessary strain on our economy. However, one must admit that people may interpret the flux of immigrants as a threat to our national and cultural identity. They appear to be stealing our jobs and sucking up our taxes.

While the factors that influence how society perceives disabled people operate on different levels, with disabled people often misrepresented as passive and more dependent than others, some have gone as far as perceiving our right to work and to a good quality of life as too demanding and our call for equality as a direct threat to their own livelihood. Besides all that, the way we are often depicted in the media is less than flattering and our lives are often put across as a life full of constant suffering. Indeed, one man once told me to my face that he would rather die than live with my impairments.

It’s this kind of attitude towards life that worries me when I consider the legalisation of assisted suicide. If I had never known that there were other ways to live or that I felt devalued as a human being because of my physical and sensory differences, would have I gone on living? Unfortunately, mainstream society can reinforce negative ideas relating to a life with impairments. I have heard and seen, on many occasions, our life as disabled people reduced to an experience that mainly consisted of pain and disappointment. As a young boy, this was the very reason I didn’t want to be associated with those so-called ‘disabled’.

In this sense, the way popular media speaks of disability is often life denying and, by implication, those who carry on living with their impairment must be extraordinary or even saintly individuals. Indeed, a life with an impairment is depicted as a life less worth living and you have to be super-human to live such a life. So, it’s not surprising that the cause of the assisted suicide movement is not without its sympathisers. As long as people still define our lives from their own misconceptions, the legalisation of assisted suicide will further discourage society to invest in alternatives.

But what about pain? This is the second and last issue that is central to the argument in favour of assisted suicide. Undeniably, physical pain can significantly reduce one’s enjoyment of life. My own experience has shown me that in moments when physical pain was excruciating, only death seemed to offer me hope of relief. However, I had access to pain medication and the periods of intense pain were eventually reduced. Granted, there are some conditions where any pain medication or palliative care proves to have little effect in the long term. Yet, I believe that providing people with a means to end their life is not a solution. Indeed, such an attitude would not only mean that research aimed to improve pain management will become a less important priority, but that people who are made to feel unwanted and burdens on society, will be more inclined to choose dying rather than living.

This is no denying that physical pain can’t be limiting and isolating. However, giving up on people is not the wise way forward. Instead of addressing the challenges faced by people, we are simply choosing to eliminate the person. In the process, we stop searching for alternative solutions to permit people to live with dignity and we would be closing the door to innovative medical research that can potentially improve the life of everyone.

I concede that my position against assisted suicide is based on my personal experience. I am also aware that those who support the right to die abroad come from various walks of life − professionals, relatives, people who have chronic health conditions, care givers, and, yes, some disabled people as well! However, before even considering whether people should have the legal right to die or be helped to do so, we should first focus on improving the lives of those who are going through hard times today. Indeed, instead of assisting people to die, we should first assist people to live!

 

REFERENCE:

 

This article was published on the Sunday edition of the Malta Independent, a local newspaper on the 15th July. The full reference to the online version is:

Cardona, G. C. (2012) "Assisted living - not assisting dying", The Malta Independent on Sunday, 15 July 2012. Available from: http://www.independent.com.mt/news.asp?newsitemid=147526 (Accessed: 15 July 2012)

Tuesday, July 03, 2012

Taking a Stand Against Xenophobia (in Malta)

I'm deeply concerned about the increasing xenophobia in Malta - my home country. As a Maltese citizen and I ashamed of the racist and xenophobic comments by people following an incident involving so-called 'illegal immigrants', , refugees and asylum seekers. The suspicious death of one such person from Nigeria while in the custody of the Maltese armed forces being the most recent incident and since an inquiry is underway, it would be irresponsible for me to comment at this or, indeed, any case for that matter.

indeed, I understand how people who have never worked with or even met a person from a foreign country where there may be significant cultural, religious differences night react to people s/he might consider a threat. However, it appears that one's skin colour is still a source of contempt and hostility by some Maltese people. While the 'threat' of illegal immigration is framed in terns of both economic terns or as a threat to our national identity, there is also a racist element involved.

I am pained to see ny fellow Maltese people reduce other Hunan beings to burdens, unwanted junk or beasts. I regret that we are ready to give up or even break our values regarding others who are different just because we feel threatened or scared. I am saddened when ny brothers and sisters from far away become objects and dehumanised or demonised until we kill their humanity - perhaps to justify our injustice and bigotry.

I feel that even if I'm not a refugee or illegal immigrant or asylum seeker or suffered from the unjust prejudice that is inflicted on people based on skin colour, I can relate to the experience of being judged or reduced as a person because of my physical impairments. Indeed, I can't really explain how painful it can be to find yourself being put within a closed box were your own value as a person is dictated by others and which is often based on prejudice and misconceptions.

I appeal to every Maltese person to be aware of the risk our fear and ignorance can have on our brothers and sisters and how an unquestioned adoption of a xenophobic outlook can do more to destroy our culture that is supposedly based on human values of justice, respect for human life and social solidarity. While we do have economic problems associated with the influx of people from foreign places, we should ve prepared to look beyond our own preconceptions and be prepared to take a stand against racist and xenophobia.

While as a disabled person having to deal with my own struggles against disabling barriers and attitudes, I can only do so much, if more people are ready to take a stand against xenophobia, we can really make a difference and preserve our true values as a nation!

Tuesday, June 19, 2012

Painful Memories of a Prize for 'Kindness'

Listen to a recent boo I submitted on my AudioBoo Channel about my experience by clicking this link to my AudioBoo Channel. Thanks!

I'm reluctant to write this entry but I feel compelled to do it just the same. Another child has been awarded the so-called 'Prize for Kindness' for assisting his disabled friend. The award which is awarded in tribute of the late Pope John XXIII has, as far as I know, always given to non-disabled children who befriend another disabled child.

I can understand how mainstream society may feel the need to reward acts of solidarity which promote the value of friendship. But, as a disabled child who learned that his best friend had received the prize for being a friend to him seemed to destroy the trust he once had. Inevitably, this made me more cautious of any later friendships and feared that I was always an inferior and could never truly be equal. It took years to repair the friendship I had with my friend and we never got close to repairing it as the memories are still there.

I don't want to open these wounds again for I've already written about it in this post. I'm afraid that in spite of all the good intentions of the organisers of this initiative, they fail to consider that the very need to reward some children for being friends whom society still considers as less fortunate is enforcing ideas of difference and separation as helping a friend becomes an act of charity just because he or she happens to be disabled-. So, in a sense, it also suggests that such friendships are, really, a sacrifice that must be carried exclusively by the non-disabled friend while suggesting that the disabled party brings no real value to the friendship!

As a person who has been on the 'other side' of the prize, I sincerely appeal to organisers of the award to rethink the philosophy behind this award. For, even if it might have been valid in an earlier Malta, it is not consistent to the principle of inclusion.

I believe that we are duty-bound to include everyone in society not just because we have the right to be included and treated equally - disabled or not, but rather this is what ensures the maintenance of a society dependent on the values of social justice and human co-existence.

Monday, June 18, 2012

Don't Politicise Disability (Newspaper Letter)


Below I am reproducing a letter published on yesterday’s edition of a local newspaper The Malta Independent on Sunday which can be also accessed online at Independent Online. The full reference for the online source can be found following the letter.

Don’t Politicise Disability

I wish to make an appeal to all those who really have the interests of disabled people at heart. I appeal to them to make sure that disability is not reduced to a partisan and political issue. I believe that would be dangerous since disability is perhaps one of the few issues that cuts across class, gender, race, faith and political belief.

Indeed, this issue has enjoyed political support from both our political parties. 
While there is still work to be done to ensure that disabled people enjoy full inclusion in society and independent living, I think that we have made significant progress in this area while plans to increase community-based services to allow them to be more independent are also underway. This is not to say that we are already there, but we cannot deny that the lives of disabled people are far better than they have ever been before. For, to be honest, I am a disabled person myself!

Thus, I make this appeal first as a disabled person, and second, as a disability activist because I fear that by turning disability into a matter for party politics, we would be doing a disservice to disabled people like myself and to the whole disability sector.

I propose that instead of engaging in dialogue based on confrontation and division, the disability issue needs an environment that fosters cooperation and solidarity. 

Gordon C. Cardona
PAOLA, Malta

Reference

Cardona, G. C. (17 June 2012) Letter: “Don’t Politicise Disability”, Malta Independent on Sunday. Available from: http://www.independent.com.mt/news.asp?newsitemid=146054
(Accessed: 18 June 2012)

Thursday, June 14, 2012

LET’S NOT TURN DISABILITY INTO A DIVISIVE POLITICAL ISSUE

In Malta, the interests of disabled people received support from all political parties - irrespective of their political ideologies. In fact, the first act to pass with the full backing of the Maltese parliament was the first comprehensive anti-discrimination act protecting disabled people from being discriminated on the basis of disability - the Equal Opportunities (Persons with Disability) Act of 2000. I find that the unanimous support for the cause of disabled people by the political parties has made it possible for many of us who are disabled people ourselves to be included more and more in society.

As a disabled person, I believe that while one can speak of a ‘disability politics’ based on a social model understanding of disability which roots the main problems we face as disabled people in the way society is organised in such a way that it takes little or no account of our impairments, I believe that the issue of disability should never become the toy of politicians to win votes from those who find themselves in already difficult situations. Indeed, such political expediency is nothing else than exploitation of those who feel marginalised and may be willing to cling to any electoral promise which may, in truth, never be realised by an approach based on confrontation and enmity.

Let us not forget that disability is an issue that cuts across age, gender, race, faith or belief, sexual orientation and political conviction. I feel it would be too dangerous if this issue becomes politicised to the extent of creating unnecessary tension which, I assure you, will make it even more difficult for us, disabled people, to continue progress in inclusion and in achieving greater independence. Indeed, rather than attempting to reinvent the wheel or wasting our precious time and energy in endless political debate, our political parties should focus on improving on what has already been achieved by all Maltese citizens. I, myself, feel that some politicians are more prone to make empty promises and make claims that are not evidence based just to gain political points from those who still feel marginalised or unaware of what Malta has achieved in the disability sector.

I appeal to Maltese people and to politicians NOT to be tempted to turn disability into a political game. For, if disability issues become the stuff of party division and controversy, no one will be a winner.

I make this appeal to you on three grounds:

First, as a disabled person, I have seen a lot of progress happening in Malta thanks to political goodwill to increase inclusion and improve on our quality of life as disabled persons.

Second, as a disability activist, I believe that the political unity so far expressed by the political class has been pivotal in ensuring that we are treated equally as other Maltese citizens. Needless division on disability issue will only lead to disaster, or even to a regression in terms of what we have achieved so far.

Third, as another Maltese citizen, I caution politicians or others who are involved in the disability sector, not to use us disabled people, to attain political advantage or to increase your votes. We have been exploited too much already.

So, let’s be politically united on the issue of disability , shall we?

Sunday, June 10, 2012

More than the sum of my parts

I don’t know what happened since I turned 30. The way I view the world and, I dare say, who I am, has undergone profound changes. I could try to explain what I’m feeling right now but I have noticed the change. I seem to have found something that was long lost. It’s like I have met an old friend. It feels as if I ham back home. I don’t even know where you’re reading this. I guess I posted this it on my two main blogs. But, then, these blogs only reflect an aspect of my identity. Or, really, my ideas about who I am. For while in ZoneMind, I express my discovery of the richness of the Buddhist tradition and try to capture my experience as I embark on a lifelong journey of self-discovery and on my practice of meditation.. And, on my other blog, the D-Zone, I express my point of view as a disabled activist. 

But, now, I wonder about whether people reading just one blog will get a whole picture of who I am. Indeed, we tend to know people in terms of the positions they hold, the jobs they perform, their income, their religion or in terms of the group they represent. The risk is that by seeing people in terms of categories and concepts,we miss the whole picture. We miss to acknowledge their humanity and their dignity. By setting them in a language of difference, we have the tendency to stereotype them and by doing so, defile their dignity.

Until now, I presented who I am to the world in many ways. To my friends, I don’t behave the same way I would do with my family or with my parents for that matter. But, am I being less authentic when I take up these different, sometimes inconsistent, identities? 

Yes and no. For, I believe that we must adapt to the particular audience or person we are relating to. You wouldn’t speak to your boss in the same way you would talk to your ten year old nephew. 

But, at the same time, I believe that there’s a certain authenticity that you need to respect and cultivate. I have come to a hard time in my life where I’m at the crossroads. 

I am happy with my discovery of a forgotten sense of belonging to a wider humanity. Yet, I recognise that I have chosen to define myself in definite terms - even if my intention was to claim my belonging to the world, I realise that I built more walls and barriers. 

Truly, I am confused because I am not sure what to do next. Yet, I have a clarity of purpose. 

I have the location but no map to guide me. 

I am lost but feel found. I ask myself questions about my current purpose and whether I can ever find the completeness I feel inside fully present on the outside. 

I continue to meditate. I try to cultivate compassion and genuine love. I also fail and fail. But I want to keep trying. I don’t feel that any other choice would be as fulfilling as that. I know that I will never achieve a state of uninterrupted happiness in this life but happiness I will strive for. I have defined myself as a ‘disabled person’ here and elsewhere. I remain disabled in the sense that society still raises barriers of structure and attitude that shout at me: Keep Out! Yet, I confess, I did erect my own barriers by using my difference as a weapon to emphasise my separateness. 

When, in truth, my aim was the opposite. I wanted to belong. But, in the process, I sought to belong for the wrong reasons. I spent part of my childhood with a need to define myself in terms of intelligence and IQ. Perhaps I wanted to escape my disappointment for being labelled as different, as other, because a mobility problem. Because I walked differently. Because I looked, in some way, strange. Yes, I wanted to belong. But I thought I could feel special if I set myself apart, better and higher than all the rest! 

Have I committed the same mistake when I grew attached to a new identity, however positive? Am I today, by remaining in the social position I held before, being inauthentic to my core being? Is it time for a change? I think that if I want to be completely honest with myself, I have to say yes… 

Yes!

Indeed, I might Have , unknowingly, fragmented my identity in neatly separate boxes, wen I felt inside that I was, as I had discovered in Gestalt and Buddhism, more than the sum of my parts? Is change necessary? I feel I have a commitment to who I am. I need to reclaim my full humanity. I need to manifest my humanity. 

I need to reach out to the world, because we are interconnected to each other. We are separate but united. We are divided yet joined. We are unique yet the same. We remain human. 

Born of a mother, prone to illness and old age. We can die at any moment. 

I have to be what I was always meant to be. 

This might be the most important purpose of my life. 

To be authentic to my being. 

To be fully human. 

To be open to the world. 

To be who I am!

Monday, May 28, 2012

Towards a Discourse of Cooperation - not Confrontation!

MY ACTIVISM


I admit that I have distanced myself from engaging in disability activism for some time now. I also have neglected writing post entries here. I think it’s because there are changes in my private life which are radically changing my lifestyle and the way I look at things. Indeed, it’s also redefining my identity as a disabled person and activist. I do feel that the cause of disability activism remains important to me on both a personal level and in relation to those who are disabled by a society that can still exclude and reject people on account of their physical, sensory, intellectual or psychological difference.

In the past, when I started involving myself in disability activism, I was quick to adopt a disabled identity as a political statement affirming that biology (or genetics) wasn’t destiny but that much of the problems we encounter as disabled people are largely caused by an interplay between wrong attitude and disabling barriers. This still holds true because the social and environmental structures do have a major part to play in our exclusion and the quality of life we enjoy.

However, in my enthusiasm on adopting a new positive identity, I tended to start looking at issues in terms of ‘us’ (disabled people) and ‘them’ (non-disabled people) which became a barrier to develop my understanding of what I wanted to achieve. Even if I didn’t adopt a radical approach that excludes non-disabled people from talking on matters that concerns us, I felt (and still feel) that much of our history as a disabled people which started in the early days of industrialisation, was characterised by exclusion, segregation and medicalisation.

Even if one may argue that disabled people are more included in society today, this isn’t the same for every person born with an impairment in the rest of the world while the Western idea of our lives as people with impairment is still influenced by the idea that death is preferable to a life with impairment and this medical view is resulting in late term abortions of foetuses pre-diagnosed as having an impairment and a lobby for the legalisation of the right-to-die. We’re still considered “lives not worth living” by some - even if this is never stated openly.

A PERSONAL MATTER


I was well aware of all this when I decided I had to do something to change things. However, I was inclined to favour a discourse of confrontation. It was ‘them’ against ‘us’. After all, “they” had exploited “us” and took away our dignity for far too long. Then, it was our time to take over what was, finally, ours! But this also conflicted with a reality that could be at odds with this line of thought. This was the fact that, unlike other differences such as race or gender, you aren’t born in a family where all members are disabled from birth as I was.

So, you have to live with a certain feeling of unease because the “them” may be your family, your friends or even your partner! But, yes, there are ways to resolve the conflict. That is by looking at the struggle against disability as one that is about claiming your right to be included and the right to be different. Inasmuch as this argument is valid, it is still based on the distinction between “disabled” and “non-disabled” people which may easily become one based on confrontation rather than cooperation.

Today, as I’m seeking answers to deep questions of life, I realise more and more that impairment is part of human existence. It can develop during everyone’s lifetime and not all disabled people are born with impairments but they acquire them due to circumstances they encounter over the course of life, such as diseases, accidents and wars. As people grow older, the chance of acquiring one form or another of impairment increases as well. Perhaps that’s why I always felt physically like an old man…

HOPELESS HOPING


This is something that, as an activist, I have been thinking about. The realisation is that everyone, at some point in life, is affected by impairment and that while one can claim to be disabled - which is true, one might experience disability when s/he tries to do what s/he used to do before. But the person hasn’t changed radically. On the other hand, his/her body has changed. And it’s a society that rejects that such change is inevitable that rejects people like me and considers us to be almost a species separate from the rest of humanity. Yes, that is what creates the greatest barriers and the deepest wound and the worse of suffering in our lives.

It’s good to continue with medical research and in finding solutions to problems that afflict the body or mind. I’m not against research as such. My problem is when we are given unrealistic expectations and hopes that we could somewhat become “normal” when we could improve our lives today if society and the way it’s structured takes more account of our differences. Then, many disabled people, would continue living a life that can be rich and a source of fulfilment

I did spend a year or two when I acquired my visual impairment) where I spend long periods of time hoping in a future where things would return to the way they were before. This never happened but what if I remained hoping in a miraculous cure or medical breakthrough?

Would I be still lingering in self-pity and in a state of stasis, wishing to end it all?

THE NEED FOR DIALOGUE AND COOPERATION


Fortunately, I did find support to find other ways to live a better life. Indeed, I dare say that my life has been enriched by all the friends (old and new) that have supported me during this dark period. The support of my family and many others. I know that my willpower and determination on their own would have been useless if I didn't find the support of sincere people who genuinely wanted to help me out without expecting a return. And, I was a risky investment... Of course, I'm not denying that I had a part to play. What I'm saying is that today I realise that I could have never achieved this much if I was dismissed and rejected there and then because I was considered a hopeless case because I had impairments..

Thus, instead of a dialogue based on confrontation, I propose one of cooperation because, in truth, the issue of disability is one that concerns everyone alive today - beyond race, age, gender, faith an belief or sexual orientation. Indeed, it goes beyond class, occupation and many others more. Instead of turning each other to enemies, we should recognise that disability is an issue concerning all of us. At the same time, society should give us the opportunity to speak for ourselves because we are living the experience of disability on a daily basis. An experience of being excluded because society has forgotten that we are a part of it and that our differences don’t make us inferior human beings.

Indeed, we must cooperate and listen to both sides of the issue. For, in truth, we need each other to break down the barriers of disability. We cannot achieve inclusion on our own.

There are no “us” or “them”...

There’s only “us”!

Sunday, May 13, 2012

Remembering Mgr Michael Azzopardi: Pioneer in the Maltese Disability Sector

I wanted to share some of my thoughts on Mgr Michael Azzopardi, who is the founder of the first institution catering for the needs of Maltese disabled people. I won’t provide any extensive information on the man because you can read his biography at the website of the residence he founded in the town of Siggiewi at Id-Dar tal-Providenza. This is, in fact, the first residence of in a time when people like me would be often hidden away in their own houses and often in undignified conditions.

 

While I remain against the practice of institutionalisation, I have to recognise that the services provided by the House of Providence (a translation of the Maltese name) have become more person-centred while encouraging residents to return to live in their own community or in supported living accommodation. Indeed, I hope to be soon one of those who will benefit from supported living services provided by the House of Providenza.To be faithful to history, the main reason why Michael Azzopardi had to settle in what once was the remote town of Siggiewi was because people just didn’t want to be living anywhere near disabled people. In fact, we were often considered to be less than humans, if not products of sin and evil. Which also highlights the fact that Mgr Azzopardi was also challenging in some way the Church by affirming the right of disabled people to a dignified life.

 

True, he would call us “angels” but, again, we should keep in mind that people tended to look at us as demonic manifestations, the term “angel” was preferable in the context of those times. Granted, that the term is still in use but slowly our humanity is recognised as we finally have more rights an greater inclusion in Malta. I was a little bit perhaps to critical of the work carried out by Mgr Azzopardi because I knew the word “angel” was one which diminished my humanity. I also knew that the work of the House of Residence has often been used to reduce our lives as disabled people to a less unfortunate one that requires the charity of others.

 

But now as we mark the 25th year since his death, I realise that far from creating an institutional residence for disabled people, Mgr Azzopardi wanted us to remain in our own communities and close to other people who were, like us, human beings.

 

This, I think that Mgr Michael Azzopardi was a pioneer!

Monday, April 23, 2012

Disability: The Real Suffering

During the period leading up to Easter, Christians around the world are encouraged to reflect on “suffering”. In the light of this, I wish to share my thoughts and reflections on the subject of suffering and, hopefully, provide readers with some food for thought without causing them to have indigestion. Joking apart, I write this piece with a degree of caution and hesitation, due to the fact that, as a disabled person, my life is often portrayed as consisting primarily of pain and suffering. I will argue that this view is a misconception of our lives as people with impairments and is, in effect, the real cause of our suffering.
Before writing this article, I asked myself why people assume that, because I have a visual and a physical impairment, my life is a tragic one, characterised by pain and suffering. While I admit that there have been times when I have felt intense pain and my life has felt so pointless and unbearable, I would not wish to define myself solely in those terms. Indeed, I have learned to live with my impairments to the extent that they have become an intrinsic part of who I am and part of my daily experience. I do not consider my life to be dominated by pain or suffering. At least, my experience of suffering is not extraordinary and, as I see it, such suffering is part of a common human experience.
At this point, it is important to say that up to now I have been talking about the suffering caused by physical pain. Unfortunately, society cannot legislate or take other measures to end these moments when, yes, we are in pain, except perhaps to ensure that people who may be in that situation have access to proper medical and palliative care and support. Having said that, even if physical pain is a characteristic of certain (and definitely not all) impairments and medical conditions, it does not define us as people. In this sense, we are not “sufferers”, we are not “afflicted” by our impairment and we certainly do not have “special needs”. Indeed, who we are extends beyond our impairments. At the same time, our impairments are also part of who we are and if we want true inclusion, we must acknowledge that we may have physical, sensory, intellectual or psychological impairments but our needs remain the same as those of other members of society.
In this sense, the only difference is that we fulfil those needs by different means. In my case, I use a wheelchair to travel around and a screen reader to access information. A deaf person may use Maltese Sign Language (MSL) to communicate, a person with an intellectual impairment may require information in an easy-to-read format, but the need is to understand that information. People with mental health issues might require support and, in some cases, medical treatment, but we all have the need to belong. However, in all cases, the needs I have listed here are common to each of us. In this sense, our impairments are not the main cause of our “suffering”. Rather, it is often society that creates conditions when we are made to suffer.
Granted, our impairments may cause their particular problems, but the real cause of our suffering is our disability. Here, it is crucial for me to make an important distinction between impairment and disability. On the one hand, impairment is related to the ascribed functional limitations of the mind or body while, on the other, disability is caused by society being organised in such a way that it takes little or no account of our impairments. In the case of the former, society can do little but, in the case of disability, society can do a lot.
I must say that Malta has made considerable progress in terms of ensuring disabled people have equal opportunities in society. Indeed, the Equal Opportunities Act (2000) is one of the most comprehensive examples of disability anti-discrimination legislation in the world. I note progress in the field of education, employment, physical access, access to information communication technology (ICT). Perhaps access to public transport is the most recent development. It would be naïve of me to say that there are no more problems. But we need to give credit to all those who are making inclusion a reality and reducing the barriers giving rise to our disability.
Here I return to the subject of suffering and disability. In this article, I have argued that the real cause of our suffering as disabled people is not our impairments but rather the result of society failing to acknowledge that, with all our differences, we are part of the community. At the same time, as a society we need to ensure that we do not exclude disabled people from being part of society simply because we fail to relate to people with impairments as whole human beings.
We are made to “suffer” when society forgets we exist or when we are misunderstood and misjudged simply because we happen to be different. Indeed, this is, I feel, our real suffering – and it is a form of suffering that all of us can reduce if we work together as disabled and non-disabled people. However, if we really want an inclusive society, we are the ones who must start the change!
Post Script
Versions of this article I wrote during Easter week also appeared on the local Maltese newspapers The Malta Independent on Sunday, of Sunday, 8 April 2012 and on an edition of The Sunday Times of Malta of the 22 April, 2012.

Saturday, April 07, 2012

A Disabled Activist and Buddhist at Heart

When I started blogging on the D-Zone, I intended this blog to deal with  the issue of disability as I developed my understanding of disability from a social model perspective. I retain my commitment to the cause of disabled people worldwide. I do so both as an activist and as a disabled person myself. I don't think that I will retire from this struggle for inclusion and equality until society acknowledges JJKKFthat people with impairment, like myself, are part of society and takes our differences into account.

Having said that, my life has led me to appreciate different things and over time I have explored various areas and developed new interests. However, my involvement in disability activism is motivated by a desire to be included as a person and as an equal to others. I want to see, for example, a philosophy that celebrates human diversity rather than one attached to certain ideals of bodily perfection. Or else, a science which doesn't assume that impairment necessarily causes a drop in one's quality off life or tries to psychologically scrutinise our minds making claims that dealing with  impairment and bereavement are, in any way, similar. I also wish that I was included as a person in religion and spirituality which sometimes have used our impaired bodies as a metaphor for sin or evil.

I have recently been admitted to hospital and, to be honest, I am still facing health issues lately. I thought it wasn't appropriate to write about this on this blog given the tendency for impairment to be associated with suffering. But, I admit, the hospital experiences I had over the last six months have led me to ask a lot of questions and delve deeper into my spiritual side. Indeed, I have been questioning the purpose of life for some months and I confess I found solace in Buddhism. Indeed, I feel that I can relate to the Buddhist outlook on life. I can't really explain it, but I feel connected to Buddhism more than I ever felt before with any world view or philosophy. I am now confident enough to be more open about it and, finally, I thought that I needed to express it on this blog - which was where my blogging all started.

It may not be   the best time to express my Buddhist confession - given it's Easter and I was brought up as a Roman Catholic. However, my embracing of a Buddhist mindset isn't a declaration where I reject all I have learned as a Roman Catholic. Indeed, I have come to appreciate the richness of both Christianity and Buddhism. This "awakening" so to speak is a personal one. I don't want anyone to follow any path that they feel goes against their religious (or other) convictions. Indeed, I will surely discover more aspects to who I am as the years pass., Life is a process and not a closed book.

Tomorrow, Christians around the world celebrate the resurrection of Jesus Christ from the dead. In some respects, this is also an awakening. It's a renewal. Yet, the miracle of this event is, I think, that it offers hope to all of us as it illustrates that even death hasn't got the final say. Some of you might doubt whether there is an after-life or claim to be non-believers. Yes, no one has concrete proof that there's life after death or if there's anything beyond this life. The Buddha teaches us to be aware of the present moment because, in reality, our pasts are but a memory and the future is yet to be. At least, that's my interpretation. In the Buddha's outlook on life, the only thing that we can change is the present and the only person we can truly manage is ourselves. Our suffering is caused by our clinging to things that are really temporary. Well, there's my Buddhist thoughts flowing.

If you're interested to read about my journey into Buddhism, please refer to my "Buddhist" blog at ZoneMind. I assure you that I'll continue writing here from the perspective of  a disability activist.

However, at this stage, I wanted to be
open about my realisation because a Buddhist understanding is now part of who I am.

Monday, April 02, 2012

ASSISTED LIVING NOT ASSISTED SUICIDE!

Recently, on a discussion list I’m following, the topic of whether assisted suicide should be legaliZed or not and whether the idea that all disabled people are opposed to it is correct or not were discussed. Below, I’m including an adapted version of my response following:

1. Claims that assisted suicide’ is a matter of personal choice and self-determination while “euthanasia” is an imposed decision.
2. Claims that a decision to end one’s life are truly free and not influenced by other factors.
3. The discussion itself - should we be discussing whether to make assisted suicide legal before asking ourselves why people get to the point of wanting to take the irreversible decision to end their life?

To be honest, I’ve been reluctant to get involved in this discussion on end of life issues. However, as a disabled person, I feel I can’t afford to remain silent about an issue which may have direct implications on my future and on the future of other disabled people.

Is there a real difference between assisted suicide and euthanasia?

First, I would contest the distinction made between “assisted suicide” and “euthanasia”. While it is argued that the former is a request made by the person him/herself, it would be naïve for us to forget that there are social forces influencing such a decision - let alone family pressure. Indeed, if assisted suicide is legalized, a decision to continue living might be deemed as “selfish” and “irresponsible” as it would pose an unnecessary burden on one’s family or on society. We also need to factor in the economic situation that often determines the funds allocated to proper health care and independent living services.

Is assisted suicide truly a free choice?

Second, I think that before debating whether assisted suicide should be made legal, we have to ask ourselves why people are choosing to end their life in the first place,. Of course, physical pain is one reason that is often cited. However, are we ready to take an easy way out and encourage people living in already hard conditions to give up hope? Should we perhaps invest in  pain management  and in helping people to improve on their quality of life? Are we supporting people facing, in our case, terminal conditions, enough or are we reducing on their options?

Have we asked ourselves why people may choose to end their life in the first place?

Third, I understand that the end of life debate is a highly controversial and emotional one. I have been through moments in my life when I was experiencing excruciating pain and felt isolated. I admit that during these moments, I would have considered to die if that option would have been available or if I felt that any decision to prolong my life was proving to be a burden on others. I am afraid that there were occasions in life when I felt my life as a disabled person was being devalued when I hear people telling me that they would prefer to die rather than live like me. In this sense, wouldn’t assisted suicide promote this kind of attitude that you have to prove you’re worthy of living?

Conclusion: Considering assisted living - not assisted suicide...

I don’t claim that my views represent the views of all disabled people. However, what I know is that if we insist on legalizing for assisted suicide, we risk to reduce any effort to make the life of people with terminal conditions better. And, in the long run, assisted suicide will be presented as a “free choice” to people who are deemed by society to be “undesirable” and it will extend to include disabled people, minorities and so on. DespiteDespite any claims that this process of providing this right will be regulated, if people find that their choices have been limited or that they see no other ways to solve their situation, then the choice to end their lives isn’t rally free at all.

I apologize for this  long post entry . However, today we’re discussing whether people should be given the right to be assisted in ending their life. Tomorrow we will be arguing that people who are facing difficult conditions have the responsibility to end their lives for the benefit of the many. instead of focusing on assisted living, or ways we could improve independent living and pain management (where needed), we are instead focusing on how to get rid of what we perceive as the problem. And that I cannot ever agree to.
Note:
If you’re interested, the discussion list I referred to is the Disability Research Discussion List managed by the University of Leeds.

Saturday, March 10, 2012

My Vote: An OPEN secret...

I woke up to a cold and wet day. The sun was covered by grey clouds and the air felt so humid that I was tempted to stay in bed for the whole day. Or, at least the morning. Yesterday, there was very bad weather in Malta and this morning is was still raining heavily. But, today, I remembered half of Malta was having its local council elections. And, yes, my council happened to be part of that half!

I don’t usually like to wake up early on a weekend but there I was after finishing my breakfast, wondering whether I should spare 30 minutes of my morning to exercise my civic right. My arthritis begged me to stay put and, for a few moments, I was going to give in to the call of the soft pillow, the warm feeling of being under my quilt with an electric heater warming up the room. But, after a lot of hesitation, on one hand, and the resistance of my stiff joints, I got up and dressed.

I waited for my father who was offering to take me there and mounted on my manual wheelchair. It was cold and when you’re sitting down and have the wind hitting you as you are pushed on the pavements and streets. Ok, given the poor design of the pavements on my locality, we travelled mostly on the sides of streets. Yes, we may be hit by a passing car but, on second thoughts, on some pavements I would surely fall on one side as they’re too narrow for a wheelchair!

I arrive at the polling station which was a school and I was dismayed to learn that there were some steps leading to… wait for this… very steep ramps. My father and a policeman had to carry me to the first steps as if I was some Roman emperor of times past. But I was even less amused when I am faced by an series of steep ramps to the voting room. But, at least, I survived so far.

Then, I came to the voting part. Unfortunately, my vision hasn’t been very stable lately and although I got my magnifying lens, my sight hadn’t yet stabilised. So, I had to ask to declare my choice of candidates to what is known as an electoral commission made up of representatives from every party in Malta. Now, Anyone who has a basic knowledge of the democratic process knows that a vote should be secret. Although the system has been somewhat modified to accommodate a segment of the Maltese population through to the introduction of a tactile ‘template’, people, like me who have a visual impairment or don’t know Braille together with those who, for some reason or another cannot use their hands, and other people with impairments that that are not able to fulfil the requirements of the process as it is, simply cannot vote in secret!!!

As I relax at home in front of the heater, I am a bit frustrated that I have to go through so much hassle to perform my civic duty. When today, thanks to the internet and technology, electronic voting is both a possibility and a reality in certain countries. Yet, it appears that Malta’s turbulent past political history when elections were rigged and votes tampered with still haunts our nation. I’m not saying that the concerns that this might happen again are not justified. Elections, and especially the upcoming general elections, are a serious matter. Yet, I feel that I am being denied my basic right of the free vote. Now, at least three people know how I voted. Is this political equality? I think not.

Monday, February 06, 2012

Disabled People, : An Economic Problem?


Europe hasn’t still recovered from the economic crisis and as world governments attempt to deal with the crisis brought about by irresponsible banking companies, the poor and socially excluded risk to fall into further poverty and social isolation. And, as more and more people find themselves unemployed and unable to maintain their former standard of living, there’s a danger that they start questioning whether those groups receiving financial benefits truly deserve to be assisted in the first place. 

I can’t deny that I’m concerned because one of the groups that are facing the threat of losing much needed benefits are disabled people. Being a disabled person myself means that even if in Malta (where I live), the recession hasn’t had a negative impact on the level of financial support disabled people get. Having said that, the financial assistance provided by our disability pension still doesn’t meet the demands of the present society and, indeed, was never meant to provide enough financial assistance to live more independently. However, even if I have a right to a decent quality of life and a right to self-determination, for some non-disabled people, we should be grateful for being left to live and shouldn’t expect too much - let alone have a chance to exert our free choices and autonomy..

But, honestly, why do people find it hard to accept that disabled people have an equal right to freedom and autonomy? There are many possible reasons for such attitudes towards disabled people. One of these is the fact that disabled people have been segregated and excluded from society for a long time. Sadly, such exclusion still exists within Europe. The second reason is that given our historical exclusion from society brought forward by industrialization, disabled people (then unable to contribute in a machine operated economy) became more like mythical or fairy tale monsters. This moment when disabled people were dehumanized led to the creation of various misconceptions, such as those which judge our life as “unfortunate”, our economic value as “unproductive burdens” and so on.

I grew up in a society which was slowly moving into accepting the idea that we had the right to be included and treated equally. However, we’re sometimes still expected to make all the effort to conform to a non-disabled world. And while many of us have spent some of our life believing there is something wrong with our minds and bodies, believing that we should become more “normal” to be truly happy and fulfilled. We were never told that, if society accepted us for who we are, then our lives would have been better then. And, whether people accept it or not, our minds and bodies are part of who we are and it had an important role to play in ensuring our true inclusion.. 

Unfortunately, when people tell me that they consider me non-disabled like them, I don’t know whether to be happy or sad. Because, in a way by forgetting my mind and body, aren’t they  really rejecting me? After all, isn’t our mind and body our only means to reach out to the external world? What I want is to be treated equally to others and that doesn’t mean that I want to receive the same treatment. Because, as long as the world is still created for a non-disabled “normal”, we still have to lobby for lifts, information in accessible format, provision of communication in forms such as  sign language or augmentative communication and so on. In this sense, treating me equally doesn’t imply treating me the same.

Treating me the same would mean inviting me to a party where the venue is only accessible by a stairs. Treating me the same would mean giving me a book in printed format when you know I have a visual impairment. Treating me the same would mean expecting me to participate in a discussion when I can’t hear what you’re saying because you failed to provide me with a sign language interpreter. Treating me the same would mean expecting me to understand what you’re telling me if you only use difficult words and fail to adapt to my level of understanding which is different than yours. Treating me equally means taking into account of my physical, sensory and intellectual differences and providing me with the means and support to maximize my potential.

Regrettably, I’m concerned that in spite of the progress made to promote inclusion, we risk regressing to a society which would prefer we were locked up in an institution. Even worse, with the cost of maintaining an institutional complex now being financially prohibitive, we may find ourselves earmarked for elimination as we are seen more as “economic burdens” than human beings.. 

This is not the product of some nightmare I had. The systematic extermination of disabled people  did take place in our recent past when the world was also experiencing a recession following the 1st World War when a European country was facing an economic crisis after its defeat in the war.. The country elected a leader who they thought would restore their former glory. The leader? Adolph Hitler. The country? Post-World War 1 Germany. And part of Hitler’s “final solution”? The systematic mass elimination of those considered unproductive, useless and “unworthy of life”. And, slowly but surely, people having an impairment were the first guinea pigs for the gas chambers. But this part of history is hardly mentioned or remembered. The first victims of the final solution.

I wish to believe that history won’t repeat itself. But some countries, such as the UK, are already cutting on disability benefits. Thankfully, here in Malta, we're still unaffected. by austerity measures But, even so, we can’t afford to remain indifferent to thee situation currently facing disabled people across Europe and the rest of the world. We can’t afford to remain silent and retreat to the comfort of our own homes. Otherwise, we can’t say that we didn’t know when we’re find ourselves in a situation where our quality of life deteriorates to a point where even our choices are dictated by others. 

And that would be the real tragedy.

Saturday, January 28, 2012

Disabled, Not Sick...

Before I start this post, I wish to apologise for my long absence. The truth of the matter is that I haven’t been well for a long while and so, I wasn’t up to writing on here- - although I’ve been regularly updating my blog, ZoneMind. I admit that these were difficult times and I needed time to think about my life and to reflect on the future ahead. Not that this is a process that will ever finish and I feel the need to explore my life through a different perspective, in this case from the point of view of Buddhism. I have said many times that I respect the fact that everyone has a right to believe what he or she wishes - as long as this doesn’t cause harm to others.

It’s here that I come to the topic of my post, which is the misconception that disabled people are sick people. I realised that this idea is still prevalent after a disabled friend of mine received an invitation to attend a mass for “the sick” on the occasion of the events that happened in Lourdes, France where it’s claimed that the virgin Mary appeared to a young girl and where many claim that they have been healed. Putting it in those words might give you the impression that I am a non-believer. But the truth of the matter, I have a healthy scepticism about miracles. While I can’t rule out the possibility of miracles, I don’t think that living hoping for a miracle is a good way to live a life. But then I ask, why did my friend receive an invitation intended for these so-called “sick people”.

The simple answer is that, more often than not, disability is associated with sickness or disease. To be exact, impairment is associated with sickness and not disability. This is because disability is the disadvantage imposed on us as people with impairment in refusing to include us as other members of society. In this sense, the link between impairment and sickness implies that disabled people lack an aspect of being human and that they need to attain the approval of the non-disabled world to be accepted and, even then, on non-disabled terms. While disabled people, like anyone else, can get sick, this doesn’t imply we are sick, broken or unfortunate. Even those who are sick most of the time and would be considered “sick people” shouldn’t be defined just but that situation.

Unfortunately, this idea that disabled people are sick is not limited to particular religious outlooks but are also endemic to the medical profession. The consequences can be disastrous for the person who is defined over and over as faulty and as not fully human. We’re not sick people. We’re not special people either. We’re only different and these labels only serve to disable us further.