Euthanasia or Assisted Dying

Euthanasia or Assisted Dying

As a child I was issued with more than one death sentence.  The most memorable and traumatic came at the age of six.  Not having seen my parents for many months, as visitors were not allowed in those days, the Ward Sister stood at the end of my bed and pronounced. 'You are going to die.  Your Mummy and Daddy are coming to see you but you mustn't tell them because you will upset them.  They're coming at 2 o'clock.'  I was all too aware of the ward clock and the time I had to try and digest what she had said before they arrived.  On arrival, Sister produced two chairs for my visitors.   Before she sat down, Mother leaned over me, kissed me and put a colouring book and box of pencils on the sheet.  I clearly remember thinking, 'I should tell her to take them home because I won't be able to use them.' but I kept that thought to myself because I didn't want to upset her and Sister would be angry with me.  She was a formidable force to be reckoned with as I had learned on other occasions. 

Belgium has just passed a law that enables children aged twelve and over, together with parents and professional individuals to take the decision to terminate life.  'Euthanasia'' or the more familiar phrase 'assisted dying,' means that children deemed terminally ill and/or disabled and perceived as having little chance of an acceptable quality of life can be killed.  Anybody seeing me in the condition I was in between the ages of four and eighteen years might also have come to that conclusion. 

Despite a growing number of countries debating the pros and cons of the issue, there is public inertia when it comes to refuting the passing of these laws and, in some countries extending criteria to cover children. Instead of being front page news euthanasia is buried deep inside the national newspapers.  Maybe people feel threatened by the fact they are continually confronted with news of diminishing resources so people who are able, currently support themselves by operating in survival mode. There may be an underlying fear that the more people who need health and social care services the greater will be the added strain on what may be perceived as a dwindling economy and thus further diminish the quality of their lives.  Could this be the cause of the inertia or disinterest?

I am well into my seventies.  I have had a quality later life having worked, travelled, enjoyed family and Church life and life in general.  I thank God that those people around me in my early years saw fit to try and give me a reasonable quality of life, despite serious illness and impairment.  Not all felt I had a life worth living and that l learned second-hand in medical settings, but some did, and I am grateful that they took that approach even in  those earlier and often darker times.  Members of the public have said to me on occasions, 'I don't know how you can live like that, I couldn't stand it,' or words to that effect.  Maybe I had less of the struggle that some youngsters have today through advanced medical and surgical treatments, but mistakes are made. Decisions that take a life cannot be retracted. While it is a highly emotive issue, and I in no way wish to minimise or underestimate the complex and confusing circumstances in which families are situated and the often agonising decisions to be made by them and those in health and social care settings, killing is not the answer.  Irrespective of all the wrestling and soul-searching, a life terminated cannot be reversed. 

Life-threatening decisions are often taken because people experience extreme pain. It is not the only issue, but there are many settings in which the knowledge, skills, and equipment to deal with pain are lacking or missing.  I do have considerable experience of intractable pain levels and I have been fortunate to eventually meet with the people who do have the knowledge, skills and experience.

  
While people have the right to make choices and decisions, many decisions are made and taken without the relevant knowledge and information, with people available who have the lived and professional experience.  There is a history of taking the lives of ill and disabled children and adults whom others have deemed fit only for experiment and ultimately untimely death. The life deemed not worth living might turn out to be a life very much worth living.  I, and others, have lived to prove it.

Ann Macfarlane
February 2014

Waiting at Waterloo Station

Sitting in a cafe on Waterloo Station watching the people and pondering on each of their final destinations is like a miracle for me but probably not for the rush hour crowd.  I still marvel that I am a part of this daily scene, made somewhat busier because of a tube strike. 
I owe it to disabled people, some known to me, others strangers and yet united as one by those things that all disabled people have experienced. Discrimination, oppression and unequal treatment all of which continue and persist brings to the fore an emotional thankfulness and gratitude towards those who fought for disabled peoples' freedom to move around on public transport.   Legislation that disabled people worked on, together with policies which we helped to create and the resulting access, were achieved and have improved the lives of all people.  Public transport is not perfect but it is a far cry from little or no access to buses, limited access to mini-cabs and taxis, and wheelchair users travelling in guards vans with chickens, fish and various unsavoury objects.  Airlines, too, have improved access for disabled people.

To experience lying in NHS beds and receiving their 'hospitality' for almost a quarter of a century can leave one 'flattened' and feeling worthless, but to be sitting here on a freezing cold February morning is a far cry from those days.. 
As I wait for the half-mile queue for taxis to subside and before I venture out again to assess if the queue has receded or lengthened, I know that when I reach the front of the queue I will have access and be able to get to my work destination like hundreds of other taxi-users today.  I would not have come to London on a tube strike day for a 'jolly.'  But still I am glad to be here because all those years ago as I lay waiting for the next surgical procedure It never occurred to me that I would be part of the ordinariness of life.  

What a gift!

Ann Macfarlane
February 2014

End of Life Care and People with Long Term Conditions

Cancer, as an illness, may result in an illness and an impairment or, as it is more readily referred to, a disability.    It may be the case that a person who has been disabled for years acquires a diagnosis of cancer that manifests itself as an illness.  Many disabled people who have lived with impairment over many years, may require additional support at the end of life.  Professional people, particularly doctors, nurses and para-medics, must be able to differentiate between the two.  A disabled person, nearing the end of their life, needs people to understand those differences so that when they are dying they know they will still have as much control as they wish to retain. People who have lived with impairment have usually taken control of their situation. They will have been in a position where they have made choices and taken varying degrees of responsibility as any other human being. They have lived life, had dreams, ambitions, made decisions and achieved their potential just as anybody hopes to do.  When illness takes hold their situation changes yet again; they may find that they are spending time at their surgery or local hospital as illness leads to deterioration in health but not in impairment.  That is where life can then be compromised for a disabled person as they may wish to continue taking control while being supported by another group of people who are trained to take control.  

Doctors and nurses, trained in end of life care, may provide positive support in a disabled persons’ life but, equally, it may be a hugely negative challenge for a disabled person when they least need that challenge.  It is an area that requires attention in terms of facilities and services if a disabled person is to have a good death.  As an example of the kind of understanding required, it can be an anathema for a disabled person who wants to die at home to take delivery of a hospital designed bed.  Many disabled people have negative memories of being labelled a patient , admitted to a hospital ward and into a hospital bed.    At this stressful time there may also be a relative in the picture who needs support and who wants to provide support but if they,  too, are a person who likes to take control, illness can compound the situation for the disabled person.  If disabled people have personal assistants who have worked with them, they can often be an ally.  An independent advocate may provide support so that a disabled person in this position can have their wishes carried through.  

Training for professional people, appropriate to the issue of end of life care for people with long term conditions experiencing a terminal diagnosis, needs to be addressed.  Ideally this type of training will be delivered by disabled trainers who are fully conversant with end of life issues. 

Too Slow, Too Old and a Burden

Too Slow, Too Old and a Burden 

The blog below was written after a day of smiling at people in the street and either the response was one of people staring back with a deadpan look or people were in their 'island' state:  earphones in, iPod in pocket, texting with one hand and trying to take a photo on their iPad either of themselves or somebody or something else.  If only they could take stock of what they are doing.  Taking this ‘picture’ and writing down the experience was a way of forming another ‘picture!’

The title reflects an image full of negativity, of people intellectually, emotionally and physically challenged often feeling useless and worthless.  This image is how it appears the world views older people against a fast-moving, younger, more energetic people pushed to their limits with ever-changing, ever more complex electrical and technological advancements.  It is a world where all ages from cradle to grave are expected to compete and overtake so that those who are slower and older become overtaken, and labelled a burden.  Older people are classed as economically demanding and a drain on ever-decreasing resources, mainly related to professional, voluntary and financial services. Those slower, older and burdensome individuals are shown by governments, media outlets, and by service commissioners and providers as a massive homogenous 'problem.'  It is not surprising that those slower, older and burdensome people become seen as 'objects' to be taken control of and kept waiting or moved about in the hope that while decisions are being made that somehow those 'objects' will be shelved, lost sight of or disappear in transit. 

As not so slow older people struggle to support much slower, much older people, often intellectually, emotionally and physically slower, technology continues to advance.    New road and rail initiatives are being designed to take ever greater numbers of people faster through our countryside so that they can work longer hours with supposedly higher and faster through-puts and outcomes.  Perhaps they will not survive long enough to become older , slower people. 

Yet, slower, older and so-called 'burdensome' people take the strain in grand parenting responsibilities, remain in work teaching younger people the intricacies of their profession, use their retirement years to contribute to voluntary sector initiatives and add spending power to the economic life of this country.  So much for being slower, older and a burden.  'Older' doesn't necessarily mean slower and a burden and even those who are slower can, when actively listened to, valued, have self-esteem and basic needs adequately met, experience wellbeing, and enjoy fulfilling and productive lives.  I know because I come into that group of slower, older people but no-one is allowed to call me a burden!

Ann Macfarlane
November 2013

Poem - "Support as me"

Support me as ‘Me’

Please tell me I'm wrong, that's not how it is,
I'll not be abused, patronised or called 'dear,'
Be put to bed after tea with nothing to do,
Please tell me right now there is nothing to fear.

My room will have en suite with sockets galore
I'll have privacy, dignity, choices, a key,
Staff who are trained, who listen, respond
Leave me in control and support me as ‘me.’

Ann Macfarlane
November 2013

Transforming the crumbling built environment. Part Two.

This blog follows on from the one written on subtle abuse and difficulties that exist in the environment for all people, but are a barrier for disabled people.  In order to improve facilities and services, the minimum action is for councils to appoint well-trained access officers.  Access officers have diminished or become non-existent as councils struggle to balance their books. This is a false economy as councils now lack professional expertise in this area; with no-one experienced in giving advice to councillors around the barriers that cause many disabled people to remain marooned in their home environment.  

 

Barriers in the home greatly affect wellbeing.  Access officers understand planning applications in terms of the law and regulations.  Their advice is critical if errors are to be eradicated at the design stage.  When applications go through that fail to address access issues, it results in discrimination, violation of people’s human rights, and involve councils and health authorities in further financial expenditure.  Worst of all is that some mistakes cannot be rectified and they mean that disabled people may have no access to facilities and services that they are entitled to - and dependent upon. 

Apart from the appointment of access officers, there is a need for access groups to be independently managed and controlled by well-trained disabled people.   Access groups provide advice and expertise to access officers, councillors and senior health professionals.  In this way access for all people will be free from the barriers that currently exist and that are deteriorating because of the lack of this input to their commissioning programmes. 

Disabled peoples’ lives should not be totally reliant on health and social care but must cover access issues that arise in all statutory and voluntary organisations.  In this way people who work in these sectors will be far more knowledgeable and start to take responsibility for their day-to-day working practices and policies. 

In 1981, International Year of Disabled People, there was a shift in thinking within local councils and, slowly, environmental access was improved.  Now time has passed, and many older disabled people who worked tirelessly to progress access, no longer have the energy and resources to start all over again.  Younger disabled people have greatly benefited from improved access and they now need to get involved.   Younger disabled people can work, shop, visit refreshment outlets, and enjoy leisure pursuits, albeit not in entirely accessible environments.

Now economic pressure is building, environment access is crumbling, buildings need repair, potholes and cracks in our roads and pavements appear daily, bushes and trees overhang and make it even more difficult for people with visual impairments and learning difficulties to move freely.  Younger disabled people, with support from those with experience, must come together to discuss and take action.  Councils must see it as a civil right for its citizens to have access to facilities and services.

One group of young disabled people from an Organisation called Young, Disabled and Positively Artistic (YADAPA), who have had opportunities to engage in dance, drama, art and craft discuss their environment and how it affect them.  After six years of pleasure and learning, they are becoming ‘political.’   Many in early adulthood want their opinions heard.   The initial idea was for them to have a voice and now the time has come for them to take responsibility, and with improved confidence, speak out in whatever way they can manage to.  Stephen Hawkins has made his ‘voice’ heard, so can they!  

Ann Macfarlane

October 2013

The subtle and not so subtle abuse that exists when out and about in the built environment

My last blog was about subtle abuse that focused on people’s values and behaviour and the enormous difficulties in trying to make positive changes.  Now, now I want to write about the abuse, sometimes subtle, and at other times not so subtle, that exists in the built environment.  An accessible environment is important for everybody but the issues become much more complex when disabled people are trying to get about. 
 
What disabled people fought for in improving environmental infrastructure in the 1980’s continues to need pressure both locally and nationally just to maintain the existing access.  You may remember a time when campaigns by disabled people centred on public transport and there were people who applauded the efforts being made, and others who thought disabled people selfish.  Most people, today, take for granted that they can access all forms of transport and the main issue is usually the cost of travelling. 

The huge cost to disabled people, both physically and emotionally, and the gains that were made, are quickly deteriorating, being neglected or not being addressed at the design stage.  Two major developments local to me, one a major health centre and the other a road improvement scheme, have both made headline news in the last few weeks because disabled people’s voices, knowledge, expertise and concerns have been ignored. 
 
Professional people in the statutory authorities are finding the criticism hard to believe and feel that these new schemes are flagships in the local community.  Both have fundamental flaws and it will now take huge additional resources to make the necessary changes and of course, some will be impossible to make as the schemes are far advanced.

In these and other instances non-disabled professional experts in their field chose not to engage with disabled people from the concept through to completion.  There are many who cannot understand how disabled people can be expert in a particular field when they need ‘caring for’ and ‘protecting.’  For them, the two are a mismatch!  This means disabled people continue to be abused by an environment that falls short of meeting their needs, and the needs of the public as a whole.  Next time you leave home, check how many heavy glass doors you struggle to open, taps in public toilets that you cannot turn on, signage with print illegible or that has two small a font and with no pictures for those who cannot read or understand them
In the next blog I will write about what would improve the downturn in environmental access.
 
Ann Macfarlane
September 2013