Reflection on Holidays

Oops! I seem to have forgotten that Christmas, a major celebration for many and a holiday season, too, has all but passed by for another year.

I hope everyone had opportunity to mark Christmas and enjoy a break from usual activities.

Christmas, especially for those of us who are Christians, can serve as a reminder that life’s beginnings and continuation are made difficult by those who have no room for the weak or those who wish to nurture them. Much of Western culture is, sadly, like this.

The one whose birth Christians recently celebrated was destined to do something ineffably great for mankind, but the “value” or ordinary lives should not depend on having a purpose, especially one so lofty as Christ’s. Our contribution stems from becoming more like the One who began life in great need and danger, and Who thus helped others to attain their potential for radically human nurturing, protection and love.

For those of us with disabilities, even holidays are a chance to confront the culture, which says ours are always lives of suffering, without fun. Going away, travelling, can also place us in new situations in which life’s possibilities are realised and boundaries stretched.

Who’s up for some white-water rafting? Parasailing, anyone? One aim of mine is to hop on one of those Segues pretty soon and give it a go.

Perhaps, like me, you’re already back at work and it seems the time for fun is mostly over. I wish one and all a fulfilling New Year, 2012.

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Stigma Among Mental Heatlh Profession makes people with Mental Illness More Vulnerable

Many types of euthanasia law include the so-called “safeguard” that a person seeking euthanasia must see a couple of psychologists or the like, who are willing to testify that the person is of sound mind, not suffering from depression, anxiety or other illness that might impair their judgement.

These measures are a crock

A report on two surveys by the Mental Health Council of Australia recently exposed the attitudes of those in the health profession towards the people they treat, and the results are most disturbing.

Consumer and Carer Experiences of Stigma from Mental Health and Other Health Professionals says the impact of stigma is two-fold, including public and self stigma. The former is how the general population reacts to people with a mental illness; the latter refers to the prejudice, negative feelings and negative impact that discrimination has on a person with a mental illness .

Stigma impedes recovery by diminishing social status, self-esteem and social networks, and all this can lead to unemployment, isolation, delayed treatment seeking and hospitalisation. This is the very picture of what many have called a “slippery slope”, leading down and down to feelings of social isolation and exclusion for a person with a mental illness.Battling with both this and a mental illness will affect their self-esteem and level of distress, making recovery all the more difficult – and poor choices more likely, given the right circumstances.

When a health professional stigmatises a person these feelings are likely to be compounded, making treatment and recovery unlikely.  So stigma would seem to be a major factor in whether or not a mental illness might be declared “hopeless and unbearable”, or labelled something similar.

An international literature survey included in the research chillingly found many studies reporting that, although people working in the area of mental health had significant knowledge about mental illness, this did not automatically translate into better attitudes towards people with mental illness.  Health care professionals’ attitudes towards people with mental illness can influence the care provided – or withdrawn…or what may be dressed up as “care”.

The research found many people with a mental illness have experienced, seen or heard someone they care for being subjected to stigmatising attitudes and beliefs from both health professionals and others in the community. The results suggest that health professionals’ training on mental health issues may be poor, and that their views are pretty much like those of others in the community.

Specifically, over a third of those surveyed report being told to lower their expectations for accomplishments in life.

More than a quarter of respondents thought they were not afforded the same dignity and respect they observed being given to people with physical illnesses.

Asked to respond to the statement, “When talking to professional/s about my mental illness, I feel that I am an equal member of the team deciding on my treatment plan”, over a third of those surveyed disagreed. Many strongly disagreed. Given the incidence of non-concent in relation to euthanasia in Belgium and the Netherlands, this figure should ring alarm bells for legislators and consumers.

Almost a third of carers surveyed said they had seen people shunned and avoided by health professional once it was revealed those people had a mental illness. This behaviour, echoing that of the general community, could further trigger people with mental illness to take their own lives or, if laws were passed, ask for “help” to end an unbearable, intolerable situation.

Over a quarter of carers don’t believe that seeing the people they care for getting treatment for their illness made them more hopeful for that person’s future. That statement has all kinds of implications, not only for the present quality of care, but the type of options that might be suggested, and by whom, in response to hopelessness.

It would seem that unless further work is done to find out how training and professional development for mental health and other health professionals is done, and what it includes – or doesn’t – people with mental illness will remain at grave risk of shoddy treatment, even from those paid to care for them, perhaps leading to poor so-called choices.

Improving mental health professionals’ training may fix the attitudinal problem, but time, funding and real enthusiasm for the task will tell.

In the meantime, Based on this research , It would be dangerous indeed for any jurisdiction in Australia to legalise euthanasia or assisted suicide, as wide-spread stigmatic attitudes among health professionals could increase the likelihood of people being forced to make tragically wrong choices.

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Changing the Australian Culture of Death: the NDIS offers Hope

The think-tank, Price Waterhouse Coopers, has released a paper called Disability Expectations,: Investing in a Better Life, a Stronger Australia.  It rightly points out that, for the government’s proposed National Disability Insurance Scheme to work, there needs to be an holistic change  in the way people with disabilities, their families and carers are seen and supported.

As Governor-General, Ms Quentin Bryce points out in the forward, “The paper highlights the need for a cultural shift in attitudes towards Australians living with a disability; from passive empathy and understanding to actively encouraging and championing a batter quality of life”.

The question must be asked, will such a shift create a culture that is toxic to the idea that euthanasia or assisted suicide are viable alternatives to struggling to cope, especially in a context of facilitating increased individual rights?

A philosophy of normalisation, arising in the 1970’s led to people with disabilities coming out of institutions and being made aware of their rights.  Independence became the buzz-word, but this has in fact led to greater isolation.  So in the 1980s there was a push to end social injustice and discrimination against people with disabilities and move towards social inclusion and autonomy.  We were seen as having the same rights as anyone else,  but this belief has let us down.

We find if very difficult, if not impossible, to participate in life outside our homes or other accommodation, and only a fifth of us have support needs for basic self-care, mobility or accommodation met.

We have become experts at waiting – patience is our prevailing virtue – as therapy, equipment like wheelchairs and, especially, supported accommodation, take up to ten years to arrive.

Ageing carers, most often our parents, can’t wait that long to see their childrens’ or other family members’ needs met.  They believe allowing others to help us is tantamount to abandonment.

All this is a toxic mix of factors meaning that offers of easy solutions via euthanasia and assisted suicide may be taken up, especially in the context of increased individual rights.

So the paper examines in detail the cultural change that needs to occur, to make introducing the Federal Government’s proposed National Disability Insurance Scheme (NDIS) viable.  It is not merely about funding, although this is crucial, but also, more crucially, about attitudes.  Unfortunately, these cannot be legislated for, and no amount of public relations campaigns will authentically cause a change in thinking.  Only when people with disabilities are more visible, everywhere in Australian society, will our thinking start be more inclusive and accepting.

One goal of the NDIS is to allow people with disabilities greater choice of services, with timely information based on evidence.  But the Scheme will fail if one that information were to be about the state-condoned “choice” of euthanasia or assisted suicide.   As the paper states, another result of poor information provision might be that people with disabilities revert to choosing already familiar services, perpetuating the current atmosphere of hopelessness that leads to the call for death as release.

The paper includes vignettes from individual’s lives to highlight the current situation and demonstrate how an NDIS might lead to change for the good.  They should serve as encouragement for for voices to be heard.  They tell of people’s expectations, self-belief, desires and dreams, and how the current culture fails to let them be realised of fulfilled.

Recognition of the importance of “dreaming” and having a life vision is a great aspect of this paper, and it proposes ways of facilitating people to let their dreams be heard.

Resilience and problem solving are qualities of people with disabilities that are seen as capable of being nurtured and related to others.  These are not only about finding and testing various solutions to life’s problems, but also about discovering unique ways of approaching challenges, identifying and getting information, and thus acquiring wisdom.

When our unique talents, like these, are recognised, and we are empowered to hand them on to others, who gratefully accept them, then we will be viewed as a crucial human resource of skills, not people that can be easily discarded. If the introduction of the NDIS facilitates this cultural change, it will be a brilliant thing indeed.

Much more could be written about this paper – I commend it to you and  hope that readers will comment bring their own experiences to shed light on what needs to be done to help the NDIS a success.  Implementation will be too slow in the eyes of some, but in others’ it will be seen as indicating the care taken to get the new system right.

I only hope that, for all its promise, the NDIS does bring about a culture in which fewer Australians might bet tempted to choose death through euthanasia or assisted suicide,  should it be offered them.

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Portraiture: the art defending and proclaiming humanity

Australia’s National Portrait Gallery, situated here in Canberra from whence I write, is a rare and important institution. It’s collection and exhibitions, both permanent and temporary, reflect the characters and events that have been important in forming the Nation. The artwork reflects the many ways we Australians consider and present ourselves to the world.

The Gallery presents an Annual Lecture, given this year by Professor Cynthia Freeland, on the topic, “a philosopher looks at portaits”. Issues raised in Professor Freeland’s analysis of what kind of depictions – sculptures, prints, paintings etc – can be considered portraits, and which may not, cross over with those surrounding euthanasia.

For a start, the subject of a portrait must be human. From almost the very beginning, Professor Freeland referenced a recent court decision in Mississippi declaring that human embryos were not fully “human” and were therefor undeserving of protection under the State Law. This type of decision informs, to some degree,  laws on who may be euthanised and who may not, based on who is deemed worth of protection or not. Some laws only serve to establish neat groups of people considered too sick, disabled or old to deserve help, but who may be validly exterminated. Extending such thought to the art of portraiture might well imply that some people who, because of disability, old or young age, lacked an arbitrary and changing “human characteristic” making them worthy subjects for portraiture. I contend that people become more worthy to be depicted because their differences demonstrate the sheer variety of the human condition, proclaiming the persistence of humanity despite whatever suffering might befall us.  Art about such people illuminates our fragility and inherent desire to live  It is because suffering people evoke hope and empathy that they are terrific subjects for art.

In one of the Gallery’s temporary exhibitions, some photographs showed children minutes after birth, and there was one extremely moving picture a couple with their still-born child. Such works are important in any collection purporting to represent the cycle of life in a society, and its authentic development, which is movement towards the common good. Dr. Philip Nitschke’s portrait is on show. I must go and re-examine the context of other works in which it hangs. Hopefully, the dubious contribution Dr. Nitschke has made to Australian society is not dignified beyond necessity.

I digress. Back to the necessary attributes of portraiture. Now, although we attribute human characteristics to some animals, all but a few species – elephants, dolphins and chimps – lack the type of consciousness required to understand the act of having one’s picture painted. And sure, they can be instructed by rote to produce a “picture” that may appear similar to a person’s image, or their own, but this will never be spontaneously made from any desire to create or communicate a message about the one being portrayed. The potentiality of people alone to participate in life, including creativity and reproduction, regardless of any individual’s actual capacity for such, is an important topic for artists to explore, methinks.

There have been many beautiful portraits of sleeping people. Even those who have recently died have sometimes allowed images to be made of themselves. Such depictions validate the continuation of life through all its phases. Sensitively handled, they can help us come to terms with our natural end.

The subject of a portrait be human, but they must only be at least potentially capable of understanding the artistic process well enough to actively engage with the artist – and, to a point, the viewer – in order to create a desired result or effect, depict a theme. There is a a kind of reciprocity between the two parties that leads to a (hopefully) mutually satisfying depiction.  Similarly, not all of us understand medical procedures, but we do allow administrators, surgeons, doctors, nurses and so on to act in our real interest and are justly aggrieved if they fail to do so, especially if they offer us death instead of basic care.

Building on this earlier criterion is another, that they are made with the sitter’s consent. Indeed, a person may deliberately request their portrait to be made, or an artist might ask their subject whether or not they wish to be drawn, sculpted and so on. One sign that consent has been given is that the depiction is be posed, no matter how hard a “natural look” has been striven for. Another is that the setting may be deliberately chosen by those involved in creating the depiction. By the same token, we must look for and acknowledge signs that consent has been given or withdrawn for any medical procedure – especially euthanasia or assisted suicide – to be validly administered. That having been said, consent by itself can never validate or excuse any intrinsically evil act like euthanasia.

Anecdotes abound about people unhappy about how or where they’ve been depicted. After professor Freeland’s lecture, the very gracious Barbara Blackman, who has been depicted twice for the Archibald Prize, Australia’a leading award for portraiture, and who is blind, spoke eloquently about her mixed feelings on having been portrayed both with and without consent, with and without knowledge of the setting or pose to be employed. It was a pleasure meeting her after the lecture.

So now the task for artists – even those, like myself who take up pencil and brush again after long creative lapses – is to explore ways of exploring these themes of consent, personal presence and humanity to aid our appreciation of life’s beauty and inherent worthiness. Maybe works of ours will hang or sit in a National Portrait Gallery someday!

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Relatively Random Reflections on “Being One”

Almost very other ‘blogger I have read who deals with the topics of euthanasia and assisted suicide has an article or reflection on isolation.  Ironic, isn’t it, that isolation is universally sensed, a factor uniting us, our understanding of which should make us stronger?

The sense of “Being One” ebbs, flows, develops through time and space. Sometimes it is a joy, comfort or necessity, at others a painful experience accentuated by disability.

Loneliness, to me, is that sense of by oneself when one actually needs or craves company, in order to share some trouble or other. It can also be the result of being excluded from other’s joy.
“Isolation” derives from a Latin word for an island, so this connotes a spacial condition. A lack of inexpensive, accessible transport might, might, for example prevent or discourage people with disabilities from reaching out to the communities to which they should rightfully belong and thus we are set apart from the rest. Misguided attempts to be helpful by placing shops, doctors and other necessities  about us in too-easy reach or to seek after convenience, could lead to people with disabilities living so close to facilities and services that we never need to branch out and discover others in communities.
Isolation can also simply be the result of lacking the same types of experiences one’s peers have had, leading to a lack of connectedness with them, an inability to relate meaningfully to others.
Solitude, however, is a different situation. This is the type of “being one” that is purposely sought after in order to recollect one’s thoughts, rest or perhaps recover from being overwhelmed by the clamour of others’ needs or opinions. Seeking solitude may be a necessary to acknowledge one’s emotional or psychological status, celebrate or mourn that, and gain strength to carry on.
How much does our society genuinely appreciate – that is, recognise and increase the value of – each person’s uniqueness? Their attributes, talents, gifts and life experiences? Perhaps a distorted, commercialised valuation of these contributes to the radical individualism of consumerist society, constantly being marketed to, with each member needing to assert his or her difference from others in order to forge ahead.
When a person is “one” in such a society, he or becomes very vulnerable not only to exclusion, but also elimination, as people may be more and more defined as such by their ability to get ahead and conform to stereotypes of  what a person “ought to be”, not by the unique qualities which could, given encouragement, complement others’.

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Reinventing the Wheel

When I was a boy, my parents wanted me to be able to share their enjoyment of all life’s activities and opportunities. One of these was bushwalking. It would allow me to venture into the country air and appreciate the beauty of this county.
Clearly, I was unable to walk through the land as others could, so how was this to be achieved? At home, I had a favourite pine chair, and it was sacrificed to the cause, being fitted with long, wooden handles for pulling, and a pair of bicycle wheels taken from who-knows-where. Lo and behold, the chair had become a rickshaw, and my experience of the great outdoors had begun.
Beholding the landscape and its many surprises did not quickly become a pastime I was eager for, and in often the prospect of being bumped and buffeted along was not so appealing. The wooden contraption was prone to twisting, its frame rather susceptible to breaking, sometimes sending its occupant flying to the dust. Once, on a long walk, I remember sinking lower and lower in the saddle, as the beloved wooden seat had snapped and the rickshaw seemed to have wheeled its last.
Right then, group of retired and interested technical folk,calling themselves Technical Aid to the Disabled (TAD) were forming and looking for new projects. A new, improved rickshaw seemed ideal. Two men, Derek Wrigley and Richard Saberton arrived for discusions as to what was required. It must be sturdy, light, easy to assemble, portable in a station wagon (estate) and good-looking, of course.
A super new aluminium version was soon born and ready for testing, with wheels taken from identical BMX bike frames, a handle in a single piece, with the length adjustable, and a hinged, folding seat. All could be disassembled and fit into the car.

We went everywhere, from Northern New South Wales to the Beach and even, I seem to recall, the outback. A huge success. The local Canberra Times wrote an article with a photo of my mother and I in the front yard.
Now this success obviously took TAD, which was just finding its feet, by surprise, and it did not at this stage think that their designs would need copyright. Legend has it that this lack of forethought led to this:

My rickshaw had been taken and adapted by person or persons unknown, into a device now common around the streets here and, I hope, many other places too. To see mothers cycling by with bubs either enjoying the ride, or even sound asleep oblivious to the view, or the traffic, and maybe hardly aware of motion at all gives me a great pleasure. I love to know that the bumps, bruises incurred, the apprehension felt have had an effect that no-one could have anticipated. I share also in the happiness of kids as they know motion, and am satisfied that mums have the convenience of riding with their beloved off-spring. I chose “Royal Maroon” as the colour for the original metal rickshaw, but the abundance of florescent colours these trailer now come in is fantastic! Just as the thought of ending a life because of the prospect of some future suffering or other is depressing, it gladdens my heart to know that life embraced to the full, for its own sake can also lead to positive, significant, widespread change which we can not anticipate. No, we ought n’t to live life solely for the hope of benefiting others, but neither can life be “shut down” or disposed of on the basis that it helps no-one.

Groups like TAD help us to overcome the often real, but frustrating need to “re-invent the wheel”, that is, to start over and over again at discovering methods or inventions that let us do the ordinary tasks of life. I hope that ideas and so on are more easily and effectively communicated since I was a boy. Our needs and desires cry out for fulfilment as do anyone else’s, but require more Lateral thinking, inventiveness and problem solving for success. So these are all talents that we are especially well-equipped to contribute to society, which must encourage us, not deny us the opportunity to give.

 

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The story of Botox is a very interesting one indeed, especially its journey from derivative of a deadly poison, to beauty treatment, and on to be part of therapy or even a remedy for various ills.

Lately, as this story demonstrates, the lip-bulking, cheek-enhancing stuff has now been applied to healing that most unsexy of organs, the bladder.

As one who has, with a lot of help and effort, and not a little frustration, managed incontinence his whole life, I understand fully how it undermines the person’s self-control. There have been days, sometimes entire weeks, in which one pesky organ seems to have taken over and screams for attention, threatening to make life a malodorous hell. For many, that threat seems to be made good, and its effects and alleviation are subjects I hope to address as often and sensitively as possible.

Whereas a Google search of the topics “incontinence” and “euthanasia” will bring up many pages pertaining to pets and vets, the inability to control or tolerate incontinence has been cited as a partial excuse for euthanizing people.

There are many ways of managing incontinence, and although it may not be entirely alleviated, patient acceptance of some means that do not rely on the body’s own capacity can help restore peace of mind.

Perhaps Botox can be the answer in come cases of Multiple Sclerosis or Spinal Cord injury, as this story suggests. If so, it would help to remove some of the uncertainty of these conditions, freeing minds to conquer on more important fronts.

This new bladder treatment joins therapy for excessive sweating and over-active eyelids as a medical use for Botox. So, although none of these are, in and of themselves, threatening our lives or real worthiness as human beings, it does seems some folks’ dissatisfaction with what nature has provided or gradually taken from them by way of bodily beauty, has ultimately given us a good thing.

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