Today is not a good day, foggy head and all

Yet the debate continues about how people live with Dementia continues

The 1 stage model vs the 3 stage model

Continually being spoken about, put down when we speak

What would happen if peoples diagnosis of Cancer in stage 1 to 3 were questioned

The Hippocratic Oath is one of the oldest binding documents in history and although not contained in the oath, “Do No Harm” has been accepted since around 1860.

The negative narrative of the media and comments by others Does Do Harm

Frankly, I am sick and tired of it all

Sick and tired of being negatively affected by these comments

The daily struggles to retain something of me and my abilities is challenging enough

When you lose Mental Capacity you do not lose your rights.

When you lose Mental Capacity you retain Legal Capacity and your rights

The rights myself and everyone with Dementia have are universal, they cannot be taken away, cannot be legislated against, cannot be abused, must be respected and upheld by all.

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I know the end stage will not be pleasant for my family or myself

I know my family suffer at times

I know my family do not see or understand all the daily struggles I face

I know I suffer at times

I know I am not suffering yet, stop saying I should by your words

I know that by perpetuating the negative narrative around Dementia, people are being abused because they feel they should go home and prepare to die after a diagnosis, not continue living their lives within the reducing limits of their diagnosis

I know it is possible for people to continue to do some of the things they did  before their diagnosis.

I know I may be subjected to BPSD in the future, which is recognised by some professionals and people living with Dementia as an abusive pathway to Chemical/Physical restraint, Involuntary care and sectioning/safeguarding

I know I…

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I am sick and tired of being spoken for

I am sick and tired of being told I don’t look like I have Dementia

I am sick and tired of the professional competency of the 7 professionals that have diagnosed my Dementia twice in the last 2 years being questioned.

I am sick and tired of having decisions being made for me

I am sick and tired of being abused by a healthcare system that ignores my rights

I am sick and tired of having my rights ignored under International Law

I am sick and tired of people being told at diagnosis to basically prepare to die

I am sick and tired of people being left to fend for themselves after diagnosis

I am sick and tired of professionals only seeing the end stage of Dementia

I am sick and tired of being told to sit in the corner and deteriorate quietly

I am sick and tired of…

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I have the right to be heard

I have the right to take risks, to make mistakes, even if they have negative consequences

I have the right not to be treated cruelly or inhumanely by Government, Society, or by treatment or comment

I have the right to try to live my life within the reducing limits of my diagnosis for as long as I can

I have the right to challenge abusive practices and comments

I have the right to right to respect for my physical and mental integrity on an equal basis with others.

I have the right to take part on an equal basis with others in cultural life, recreation, leisure and sport

I have the right to choose where I live

I have the right to take part in my community

I have the right to take part in public and political life

I have the right to be treated equally with other chronic terminal conditions

I have the right to these rights and others under the United Nations Conventions which are recognised by the UK Government as International Law

I have the right to uphold those rights not just for myself but for other persons living with a disability

I have the right to…

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I am now calling for the Organisations that claim to represent us and or protect us to step up and bring this all to an end.

There needs to be a meeting organised by the UN, involving the WHO, the UK Government, EU, and organisations that represent us along with the various groups of people living with Dementia and professionals:

A meeting that must happen now to fully respect our rights under International Law and to stop the harm that the negative narrative causes

To move from the 1930’s to the 21st Century

To stop the questioning of our diagnosis

To reinforce the 3 stages of Dementia

To recognise that there are different challenges and abilities in each stage

To remove the negative narrative

To move to an enabling healthcare system, society and media

To uphold our rights

To remove the disabling effect that the comments on social media, the media and in life generally have

To have access to support, services and assessments from the point of diagnosis

To allow us all to live our lives in peace, to deal with the increasing daily challenges

To…

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I am living with Dementia

I am not living well with Dementia

I am living within the reducing limits of my diagnosis

I am not suffering but I suffer at times

I am trying to be positive and appear ok for my family

I am fighting challenges everyday

I am not the same as I was 5 years ago or even a month ago

I am dreading the Palliative stage of Dementia

I am trying to live my life fighting the challenges before me, BUT

I am still me

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The monster that is the questioning of people’s disabilities has reared it’s ugly head again.

Time and again, people that should know better question our disabilities.

Yet, until they have walked in our shoes, they are not qualified to question our disabilities.

Professionals learn about the mechanics of a disease from textbooks and day to day contact with people with disabilities.

People generally only see the media perceptions of Dementia and experiences of the Palliative stage of Dementia.

They cannot learn the lived experience, they have to live that experience.

They cannot see hidden disabilities but we live and experience them everyday.

With all the stigma around disabilities, no one chooses to have a diagnosis of Dementia or any other chronic terminal disease or disability.

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Examples of where the United Nations Convention on the Rights of Persons with Disabilities gives us a platform to advocate without our rights being abused.

Our rights under the United Nations Convention on the Rights of Persons with Disabilities include:

Article 1 says why there is a Convention on the Rights of Persons with Disabilities – to make sure disabled people get all their human rights and to encourage everyone to respect the dignity of disabled people.

 Respecting the dignity of a person is recognising them as a person of equal worth to others. This means showing real respect for their feelings, views and privacy, and always treating them as an individual. This is the absolute starting point for human rights – for everyone.

Article 2 explains what different terms mean, like “communication”, “language” and “universal design”.

Article 3 sets out 8 general principles of the Convention. These are:

a)    Respect for each person’s dignity and personhood – like other human beings, disabled people are not the property of other people. You have your own thoughts, feelings, ideas and plans which other people should respect;

b)   All the rights in this Convention belong to every disabled person;

c)    Disabled people are full and equal members of society;

d)   Everyone must be respected. That people are different is a good thing that helps make a better society and world;

e)    Every person must have equal chances in life;

f)    There should be equality between males and females; and

g)   Children usually gain more understanding and ability to do things and make decisions as they get older. There is no fixed age for this: it all depends on the individual child and what you want to do or decide. Countries that agree to this Convention agree to make sure everyone understands that children are usually able to make more decisions over time.

Article 4 of the Convention places a massive duty on governments to do everything they can to make a reality of all the rights for all disabled people living in their country.

Article 25 gives disabled people the right to the best possible health without discrimination. Governments should make sure health services understand the needs and rights of males and females. They must also:

(a) Give disabled people the same range, quality and standard of free or affordable health services as other people get, including services related to sexual and reproductive health

(b) Provide services that specifically meet the needs of disabled people, including children. This includes services that minimise and prevent further disabilities

(c) Provide services as close as possible to where people live, including in rural areas

(d) Make sure professionals give disabled people the same quality of care as non-disabled people, and that they understand and raise awareness of human rights

(e) Make sure it is against the law to discriminate against disabled people in health or life insurance

(f)  Make sure it is against the law to deny food or fluids from people on the basis of their disability.

Article 26 is about the right to be independent and to be fully included in society. It sets out the things that government must do. This includes supporting participation and inclusion in all parts of society and making sure professionals get training to help them uphold the rights in the Convention.

Article 29 gives us the right to be active politically and to take an active role in society.  It includes the right to be a member of a non-governmental organisation and political party.

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Conclusion

Shouldn’t professionals be aware of the emotional and psychological damage that their inane comments cause?

Could they be bringing their profession into disrepute?

Should their professional bodies be doing more?

One thing is sure reader, Dementia is no longer a silent disease and people with a diagnosis will not be silenced by the ignorance and the negative narrative of others.

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I’m in Brighton for the UK Dementia Congress for 3 days this week and as writing and things generally have been  challenging over the last week or so, for this week, I’ll let the media do the ranting.

Six stories that make you wonder where the Civil Society Government’s are fond of talking about, have gone.

My Dad was taken off in the back of a squad car. His crime? Dementia

‘I go without food’: Struggling pensioners reveal what retirement is like

DWP ignores concerns from disabled people who shun activity over benefit fraud fears

Autistic woman ‘left sick and broken’ by two-year universal credit delay

Atos threatens to call police after claimant questions PIP assessor’s mental health training

Welsh government’s independent living decision ‘threatens support of hundreds’

Hopefully the sea air will put me back on form.

Here we go again, it’s Invisible Disabilities Week in the US, however, in the UK “I” newspaper yesterday Julia Buckley writes about her invisible disability and being verbally abused by train staff because she doesn’t look ill.

How do you treat someone with an invisible disability ?

“One of the last times I got the train home to Cornwall, I was bullied by one of the platform staff at my destination, who then gleefully dared me to report her. I wouldn’t, she implied, because I was gaming the system. My crime? I’d booked assistance to help lift my small case and shopping bag – and I didn’t look ill.”

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But You LOOK Good! is a book that gives those living with chronic illness and pain a voice. It expresses how they feel, what they need and how others can be an encouragement to them. Read an excerpt here

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On Twitter the hashtag #InvisibleDisabilitiesWeek showcases people comments and experiences this week, there are also tweets from @InvDisabilities, and it’s also worth taking a look at the Invisible Disabilities Project

Even in the UK Parliament, this article from 2015 shows that MPs with invisible disabilities can be abused.

People of all ages face stigma and abuse because of their invisible disabilities even the young.

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People with genuine invisible disabilities do not game the system, they will be abused by being unable to access things that should be available to them because they have an invisible disability.

When they do access things, they can be taken away because they begin to live with their invisible disability even though they are things that enable them.

Do we have to have a tattoo on our foreheads to stop the abuse?

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Recently, it was the centenary of women getting the vote in the UK, Emmeline Pankhurst was a British political activist and leader of the British suffragette movement who helped women win the right to vote, who with others in the movement were abused and vilified.

The 1930’s, where society and the media, turned on the disabled, Gypsies and the Jewish Community, blaming them for the ills of society, which lead to the Holocaust.

It is also easy to forget that through Hungerhauser and T4, the disabled were the first victims of the Holocaust.

In the 1950’s and 60’s, Martin Luther King Jr. who was an American Baptist minister and activist, who became the most visible spokesperson and leader in the civil rights movement from 1954 until his death in 1968, challenged segregation, inequality and human rights abuses, although they are still prevalent in the US today.

Nelson Mandela, who was imprisoned for 27 years but who campaigned against Apartheid and following his release in 1990, became President of South Africa in 1994, marking the end of “White Rule” and the end of the rights abuses of that regime, again there has been little real change.

Looking back over the last 100 years, as Jayne Goodrick has said previously “Everything has changed, but nothing has changed”.

We have gone full circle, women are still fighting for equality, society and the media continues to blame the disabled for the ills of today’s world.

The proposed Liberty Protection Safeguard and the new BMA guidance, which may or may not come into force, could be compared to a modern day Hungerhauser or Aktion T4 Programme.

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In Death by deliberate dehydration and starvation: Silent echoes of the Hungerhauser, John M Dolan writes:

“During the final days of his life, Oscar Wilde, aware that death was imminent, lost interest in food but drank whenever one of his visitors brought him a bottle. In reply to a friend’s warning that his drinking was self-destructive, Wilde said: “You are qualifying for a doctor. When you can refuse bread to the hungry, and drink to the thirsty, you may apply for your Diploma.” 

Wilde was a master of hyperbole. He was, after all, the playwright who assured us that “nothing succeeds like excess”  and who is reported to have declared, while sipping champagne on his deathbed: “I am dying as I have lived: beyond my means.”  His deathbed quip about the ability to refuse bread to the hungry was a preposterous characterization of the qualifications of a nineteenth-century physician; but, incredibly enough, as our own century draws to a close, we have among us individuals prepared to take seriously Oscar Wilde’s specifications of the requirements for a physician’s diploma.

It is a remarkable circumstance that, in a nation whose wealth and resources are so vast as nearly to defeat the imagination, scholarly conferences, articles in learned journals, and courts ponder the question whether we can be justified in deliberately causing death by withholding food and water.

Dostoevsky remarks that one may judge the degree of civilisation in a society by entering its prisons. He measures a society’s civilisation by gauging the fate it accords some of its most wretched members. In the same spirit, others argue that the correct measure of the degree of justice in a society is the lot it accords its least fortunate citizens. Rawls’s theory of justice holds that a just society is one which, in addition to according each of its citizens the largest amount of political liberty compatible with each enjoying the same liberty, also allocates all other goods that arise from social cooperation (wealth, income, privileges, and so on) in accordance with a scheme designed to maximise the welfare of the least advantaged representative persons. And Christ’s teaching was: “Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.” (6)

The present task is one of casuistry. In the case proposed for analysis, certain family members are asking the officers of a nursing home to stop supplying nourishment and fluids to a relative who resides in the home administered by those officers. The relative in question is an unconscious man who has been diagnosed as being in a “persistent vegetative state.” Thus, we have before us someone wholly defenceless and vulnerable. If any one fits the biblical description, surely Mr. Stevens, the defenceless disabled man whose nutrition may be cut off, counts as “one of the least of [our] brethren.” Our assignment is to state principles that should be applied in the case at hand and to recommend a course of action. The next section of this article articulates three principles that bear on the case and draws the conclusions they dictate. The sections that follow examine some of the details involved in the case and express some reflections on the moral climate of a society in which cases such as the present one are viewed as presenting a serious challenge to moral intelligence.

The thesis defended here is that the central question raised by the case under discussion is whether it is every permissible to arrange deliberately for a disabled person who is not terminally ill to die of thirst and starvation. It is worth recalling that the Phoenicians, who devised the method of execution known as crucifixion, originally employed the technique as a method of killing by deliberate dehydration and starvation.

The earliest ‘cross’ was actually just a vertical stake to which the condemned was tied and left to expire from thirst and starvation.

It is remarkable that physicians and laymen are now seriously contemplating adoption of a method of killing that was regarded as particularly cruel and degrading in the ancient world and was, among the Romans, who inherited the technique from the Phoenicians, “reserved for slaves and the worst of criminals. …”

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Antisemitism is still prevalent and the LBGTI and BAME communities are still fighting for equality.

They say history repeats itself, surely a civilised society should learn from history and the mistakes of our forefathers.

My references to the 20th century aren’t meant to offend, rather to illustrate that nothing has changed and the lessons of those times have yet to been learnt.

We get told “you don’t look like you have Dementia” or “that happens to me” etc by the naysayers.

No one chooses to be abused by a system that on diagnosis, sends you home to die, a diagnosis which means that you have to fight and pay for your support (when you can find it) and a system that leaves you depressed and abandoned and subjected to the medical model of healthcare.

A system that stigmatises you following that diagnosis, that leads you to be abused by the medical model of BPSD (Behavioural and Psychological Symptoms of Dementia) and dehumanised with the lack of a rights based approach to you care, which discriminates against a person because of lack of capacity or advancing age.

In “Behaviour Change Ahead” on Saturday, I will refer to behaviours as emotions and BPSD (The Behavioural and Psychological Symptoms of Dementia) as ERD (The Emotional Responses of Dementia) until someone comes up with a better term.

These articles are not aimed at any one individual but rather a commentary on the negative narrative and the written, verbal and systematic abuses of people living with Dementia, their families, other disabilities and professionals that promote good practice in our care.

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Resources

Why Dementia Must Be seen as a Disability

The Suffragette Movement

Lessons from History

Aktion T4 programme

T4 Programme

Martin Luther King Jr

Nelson Mandela

LGBTI rights, where do we stand

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Sadly, the perceptions of our diagnosis has reared it’s ugly head over the last few weeks.

The old chestnut “you don’t look like you have Dementia”

The questioning of our diagnosis.

The media misinformation about cures, how to stop/reverse Dementia 

and advertising campaigns that abuse us by portraying someone with Dementia, hunched over, drooling with wrinkly hands, oh the fear, the dread, the suffering.

With all the negativity that surrounds a younger persons diagnosis of Dementia, the benefit system doesn’t throw bags of £50 notes at us from day one ( I do not receive anything), we do not want your pity, nor do we choose to bring the negativity of a diagnosis to our families.

In 7 Elements of a Proper Diagnosis , Teepa Snow describes what is required to get an accurate diagnosis.

It should also be remembered that there are stages of Dementia, early, middle and late stages for want of a better description.

Each stage has it’s own unique challenges and everyone’s experiences are different.

At diagnosis, we receive

In the so called end stage, where we become unable to express our needs and subjected to the medical model of BPSD (the Behavioural and Psychological Symptoms of Dementia) which leads to the pathway of chemical/physical restraint, sectioning/safeguarding and involuntary care.

The “medical model”, treats the symptoms of our changes and we become institutionalised into for profit organisations, where we become segregated from our families and society.

Recently “exclusive society” comments have been that:

The young shouldn’t pay for the old

At 40, you should pay more taxes to pay for social care 

A drain on resources

The cause of all the ills of society.

In that case, the counter argument could be that at 40 you shouldn’t:

contribute to education and maternity/child services

contribute to reduced fares and admissions etc

In an “inclusive society” it should be that:

Everyone contributes to everything

Through a fair taxation system, based on the ability to pay

Where everyone is treated equally and given the same opportunities and support

Society contributing inclusively to the needs of everyone:

Regardless of age, religion, ancestry.

Whether they are Heterosexual, LBGTI or BAME

Abled or DisAbled

The “social model” leads us to a pathway of inclusive state funded (via taxation), not for profit, support, services, rehabilitation and financial support, which treat the causes and enables us to live with the decreasing limits of our diagnosis.

People with other chronic terminal diseases are portrayed as fighters and admired.

People with a diagnosis of Dementia are pitied and portrayed as sufferers.

People speak for us and say we are self promoting. 

We speak not for ourselves, but for those that do not have a voice.

People make decisions for us.

We can and should help to make those decisions.

Hold on, you might say reader:

A person with Dementia speaking and campaigning for change, that’s ridiculous.

They are incapable of doing things for themselves let alone be involved in developing the services they need and campaigning for a change in the perception of Dementia.

That’s also the arrogance of some medical professionals, who question our abilities when in fact they are questioning the professional competency of our Neurologists and Neuropsychologists.

In my case, they are not questioning me, they are questioning the competency of 7 professionals involved in my diagnosis.

My GP, the Doctor that evaluated my MRI, the Doctor that evaluated my SPECT Scan, then a Professor and 2 Consultant Neuropsychologists that undertook a total of 7.5 hours of testing over 14 months and finally my Neurologist who gave me the diagnosis.

Then there is also big Pharma and the media, who perpetuate the negative narrative for their own gains, promoting the search for a cure and using the negative narrative of fear and dread.

This might surprise you reader, but we do not choose to have a diagnosis of Dementia.

These articles are not aimed at any one individual but rather a commentary on the negative narrative and the written, verbal and systematic abuses of people living with Dementia, their families, other disabilities and professionals that promote good practice in our care.

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Resources

How to spot and challenge negative language in the media

Patient engagement in Dementia: extra support leads to informed contributions

Too tired to blog but too angry and despairing not to

A Few Odd Moments

Human rights do not depend on funding, they are fundamental

Munchhausen by Dementia

Clearly we have much still to do…