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

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!