A forgotten people HMD 2011

Archived  from my previous blog.

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I have picked this Untold story to share.  T4 is well documented – yet this programme designed specifically for the killing of thousands of disabled babies, infants and adults during the WWII is often untold or forgotten.

It is about those disabled people that were taken by bus into a beautiful historical building in Hadamar, Germany. It was a hospital. A place built to ‘care for the welfare of people’.  Disabled people were thought to be incapable of productive work (i.e. hard work) and this was the message given to the public in the papers and on film.  Work incapable disabled people were one of the first to go.  The treatment was the same for others with impairments,  for this place was a euthanasia centre.

” … make a clear promise to speak out against discrimination which judges some lives to be of less value than others today.”

[HMD 2011]

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Last year I went to Liberty Park in Overloon, Holland.

How far will we go to keep or win back our freedom?

It is here where visitors can look around the National War and Resistance Museum and Marshall Museum.   The park, the site of one of the heaviest tank battles, has a message – one that is relevant to each one of us today – freedom cannot be taken for granted.  It invites us to think about war and oppression. How far will we go to keep or win back our freedom? It was hard to make it into the door without choking  up.

I wondered about my own freedom and how much my life is valued?

As I write this I ponder over the current budget cuts that take away the liberating welfare support or health care disabled people rely on to survive.  In the UK it seems society values us less than ever before. Oppression and injustice is never far away. Whatever format it takes – it still damages lives and takes lives.

I read the exhibits, I looked at the photos of death, destruction, fear, hope and survival. I sat in the quiet, reflective memorial room. Where are the disabled people of Holland and elsewhere who were tortured and gassed, who is telling their story?  How many people have sat in this place and remembered our forgotten people?

Hidden stories

On the way round we saw the graphic images and videos of genocide to present day.  In Overloon they are not afraid to show it as it is.  It’s not for the faint hearted but worse not to look.

Life size photographs of children in their mother’s arms – both slumped on the street, dead from gas attacks in recent wars.  The video of survivors  with skin blown of their bodies getting help in the years after the Atomic bomb dropped on Nagasaki.  These are the images that stick in our minds, that make us tearful.

 

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However, much injustice is out of sight.  Travelling around Holland, looking at pretty houses and out onto fields of flowers and parkland it is hard to imagine the stories that unfolded in those very buildings and fields.  It is a reminder that injustice and denial of freedoms and liberty is often disguised, going on unnoticed for far to long, in front of our eyes.

Sometimes we open our eyes and see it happening – yet people do nothing. People knew what happened in that hospital – few spoke out and fewer still did anything about it.

Do you speak out against inequality and discrimination against others?

Injustice is part of my history as a disabled person  – and relevant to my life today.

It is relevant to all of us today.

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Never forget.

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When I met genocide survivors

Meeting survivors of genocide – my blog for Holocaust Memorial Day 2012 has now moved to this page.

 

I have been reflecting again this week on why HMD is so important. I know, in a small way, how hurtful words can be. How powerful they can be – to make people live in fear or to give comfort and hope.

Please pledge to speak out against hatred and hurtful words – whether it’s cruel words on Twitter, Facebook, at work or spoken by people you work or live with.

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Visit HMD.org.uk


HMD 2012

The theme this year “asks us to think about the rights, responsibility and duty we all have to speak up when we see or hear something which we believe to be wrong. It challenges us to learn about what happens when we don’t speak out and what can happen when we do use our voice.”

First I read.

Then I watched.

After I cried.

Now in my weakness I am strong.

I am alive

I can and will speak out against the path to genocide.

When I met survivors of genocide

In 1988 I first learned about the Holocaust as a high school student. Genocide was something consigned to history, or so I thought  – but it wasn’t. The Guatemalan Civil War, the regime in Chile, the Lebanon massacre were to come.

Then came Rwanda – the second time I had heard the word genocide and the first time I had witnessed some of the most graphic news footage of the time.  About a year later Srebenica in Bosnia… and this is where my story starts.

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When I volunteered for the Red Cross, many of those fleeing Bosnia and surrounding countries were coming to the UK hidden in lorries etc. I would hear people complaining about asylum seekers and making it clear these people weren’t welcome. I was proud to be in an organisation which was world renowned for providing help based on the grounds of neutrality and in a none-judgemental way. I will never forget how my friends would be called out to set up beds and treat the wounded.

[Image, above, Bosnian women grieving]

People arrived with bullet holes in them, their families missing or dead. They arrived not knowing what would happen, fearful of whether they would be sent back to die.  They looked at my friend’s uniform bearing the Red Cross – a symbol of protection bringing the look of relief – Krissy Cross they said.  It didn’t take a translator to work out that comfort, food and some reassurance was going to be needed.

I got involved with a First Aid course for Albanian people, refugees, who were staying in the UK and spent long hours working with a translator I had to source. I went armed with all our handouts, but as it happened, they had very good English and a translator in attendance by that time and my efforts went unappreciated!  After all the terrible things, here was a sign of hope, a new life.

I feel angry that people in my community were speaking the language of hatred against these people, wanting to send them back where they came from.  It was the power of hurtful words, exclusion and stereotyping that had contributed to changing their life back home into one of terror and massacre in the first place – the first stage on the path that led to genocide.

I leave you with the following to contemplate.

*Resources from Holocaust Memorial Day Trust

“Many people consider tackling the issues of equality and fairness to be the province of anti-discrimination law, of advocacy groups, or of government, to be addressed by discrete, often marginal programmes of activity directed at particular groups. But the greatest impacts on the opportunities open to individuals are made by everyday decisions in every part of society, most of which apply equally to everyone.”

Equality and Human Rights Commission, 2010.

Rights for everyone or a cure for the select few?

Today I considered this:

People might fund research but will they support my rights for a better life with as much passion?

When it comes to charity funding, I’ve lived too long with a progressive impairment (and experienced the effects of charity) not to be clear in my mind who will benefit from any money I donate or which charities I want to support. Donating money is a personal thing. I prefer to donate to specific charities, with an ethos that fits my views on disability equality for example or because of the way the money will be used.

Anyway, a certain bucket challenge these last few months, has seen a lot of money go to one particular charity.

Today I read this article by  Andrew Pulrang who blogs with reference to the MDA telethon & ALS ice bucket challenge.

He writes:

“I don’t really object to raising money for medical research into disabling conditions. I resent the fact that the general public is consistently more excited about supporting those efforts than they ever are about supporting equal rights, equal access, and the nuts-and-bolts stuff disabled people need to live decent lives with our disabilities.”

This is a hugely important point that gets lost in big fundraisers of any kind that focus on research.

This is what my blog is about today.

 


 

 

We know that 1 in 17 people will be affected by a rare disease at some point in their life – like ALS, Huntingtons, Cystic Fibrosis or Muscular Dystrophy (4 of over 6000 recognised rare diseases in the UK). I’m explaining this because I’m looking at research from the point of view of having a rare disease.

What if the one you, a friend or loved one gets isn’t the one attached to a well funded charity? The person still has to get on with their daily life – living in a society that doesn’t seem to care if you are treated equally or not or receive the best support, medical or social care? One which isn’t bothered if you have equal (or any) access to work, education, leisure, housing, equipment to enable you to move or speak? One that might leave you below the poverty line?

People might fund research but will they support your rights for a better life with as much passion?

As the ice bucket swept across the globe in various formats – I found people’s ideas quite disturbing, especially this one.

  • A show of love – the more you give the more it shows you care?

I  read that one person (family member of someone with ALS) said ‘this (ice bucket donation) would show them they are loved’.

I don’t like the idea of equating the amount of love you have for someone with how much you give to a charity that could find a cure for them.

So, because nobody in my family or friend group has done a major fundraiser for Limb Girdle Muscular Dystrophy type 2C – does that mean they don’t love me as much and want a cure or treatment for me? You can still love someone, and want the best medical treatment for them without proving it by running every marathon known to man – or is society pressuring you into thinking you must?

Reading people’s comments about the Ice Bucket Challenge also opened my eyes to the general ignorance of what people think research means or does.

moneyFundraisers for research – when a cure or treatment isn’t what you think.

People more readily support research for ‘cures’ or major treatments – because then people won’t have terrible progressive diseases. Life will be good for them, no pain, living longer, doing ‘normal’ things again, walking, talking, eating, breathing.

  • Not all about cures – research might be for therapies to ease symptoms or detect faulty genes or understand how conditions are passed on to children.

Some types of disease can’t be detected until a person has symptoms. Other types can be detected just after conception or during pregnancy, in some cases outside the womb. This gives people a choice to make. Many families have these options already – research has allowed us to detect who might have some of these rare diseases or pass the genes onto their children.  So research isn’t all about a cure and there are a lot of other things that need to be funded along side – like balanced information for those who might be affected, emotional support and counselling.

However, it may be possible that, in the future, an infant is cured before they know they had anything wrong in the first place – this is the sort of thing people seem to think research is – full removal of the condition with no ill effects rather than just ‘gaining a genetic understanding’.

  • Back to research – is it what it’s cracked up to be?

The public generally know very little about how research works even though they pile money into it.  So many times I read comments suggesting people with ALS would now be cured because of the amount of money going into research.  I wish they had taken the time to find out how research into rare diseases works (and how treatments are given or not given if available).

  • Not a quick fix

Do people understand how many millions research costs, over many decades of trials before a therapy is available for all.  You don’t inject millions into research and expect a cure within the year!

  • Does a cure mean for the whole body or a part of?

Even if a therapy is found to ‘make right what went wrong’ – it might not be a whole body treatment, and may only work in young people or children where the disease hasn’t progressed enough.

A cure or treatment, could give people back a level of mobility, for example, – but they might still need a wheelchair  or specialist support.  Maybe they would gain the use of even just one finger – it would be a big thing for the person and worth the research effort … or would it?

  • Old and past it

Even if a cure came up for my muscles, most of them have turned to fat and just aren’t there – so adding the missing gene to give me the use back, isn’t going to help me without a full muscle transplant as well!  I.e. there will still be a whole group of ‘incurable’ people for whom research will be of little if any assistance in it’s current form – *feel free to donate to cybernetic implants – might be a better investment of your charitable donation for some people!

  • Who gets the treatment?

Also, a treatment may exist but is won’t be available on the NHS or only given to a select few people because treatments and therapies are so expensive or ‘unproven’. We have seen how treatment options affected Ahsya King and his family this week.

  • Human guinea pig

Sometimes people like myself get asked if we want to participate in research.  I have on a few occasions and I had to fund getting to and from the hospital and was never told how the results would be used – I donated my living body to funded research and didn’t hear anything about how I was going to be used (we are talking about pictures of my naked torso showing scolisosis progression and bone density scans – plus the humiliation of being photographed from every angle in hospital photography studio). I felt rather violated – maybe they ran out of money when it came to patient consent and understanding what on earth was going on! Would you be so keen to donate if you knew it could be like this? Is this the sort of research you imagined?

Before you give to research charities

Please, before you donate to charity, do some homework, at least visit the charity website and find out what sort of things you might be funding and how involved patients actually are. Read between the lines, ask questions and make sure it’s something you really want to support.

 

Be passionate for our rights and inclusion – speak out with us so we can improve our lives.

rightsWhat would be beneficial to the millions of people with severe impairments, would be if people could also stand up for us when we are struggling to access basic things in life.  Abuse and harassment (sometimes random acts of violence to visibly disabled people) is keeping people locked up in their homes out of fear, many have even taken their own lives because of hatred, bullying or threat of poverty. These things are just as important to address, but few seem to care.

Did you know that disabled children and adults are being changed on dirty toilet floors in public toilets and even hospitals – because there are no hoists or changing benches available? Basic hygiene and sanitation is being denied – in the UK!  Just one example of how improvements are needed for equality that we simply haven’t addressed. Where do you start when we haven’t even got equal access to a toilet.

People aren’t so willing to stand up for our rights to health care, social care, leisure opportunities, housing, equipment, work etc and even life itself. These things are ignored.

Cures might come one day for some people with specific conditions – but there will be millions globally who will remain severely disabled and excluded because nobody invested in making the day to day things right.

Inclusion benefits everyone – and will always be needed unless you believe in a future where there are no disabled people or those who are sick or frail from simply living longer.

 

 

 

Ending a child’s life

A report from Great Ormond Street Hospital was published yesterday in the Journal of Medical Ethics.

Doctors cited Article 3 of the Human Rights Act to support their opinion that a review was needed on the ethical guidelines around situations when parents want treatment to continue but medical staff feel the treatment is too aggressive and futile – and that their child should be allowed to die.

Article 3 is about making sure a person is not subject to torture or degrading treatment.

 

Worryingly, the doctors insist:   “Spending a lifetime attached to a mechanical ventilator, having every bodily function supervised and sanitised by a carer or relative, leaving no dignity or privacy to the child and then adult, has been argued as inhumane.”

So is it inhumane to keep me alive then as an adult in this state? Will doctors be demanding courts to end my life just as they want the courts to demand to end the life of a child with the same needs?

How is ‘torture’ and ‘dignity’ measured or viewed and at what point does Article 3 take precedent over the first Article of the Right to Life?

 

Article information via Very religious parents causing suffering to sick kids, says report – Yahoo! Lifestyle UK.

Respect and chastity

Whilst the RC church holds strong to the ban on contraception (which I personally don’t entirely agree) I totally agree with

“… Another effect that gives cause for alarm is that a man who grows accustomed to the use of contraceptive methods may forget the reverence due to a woman, and, disregarding her physical and emotional equilibrium, reduced her to being a mere instrument for the satisfaction of his own desires, no longer considering her as his partner whom he should surround with care and affection.”

[“Humanae Vitae: Encyclical of Pope Paul VI on the Regulation of Birth, July 25, 1968]

So many men at Uni boasted about conquests and how many girls they had. Keeping charts and swapping notes. Deliberately encouraging drinking or asserting emotional control to more easily add another to their list. Utterly vile.

I feel sad for the woman who woke up feeling proud to be on a list. I feel sad for women who woke up to the horror of rape.

But it was ok – they had a supply of condoms so no harm done – right?