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

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.