My new shop: Oh How Lovely Gifts is open

My new shop on Etsy and Facebook selling luxury greeting cards and gifts for special occasions – all proceeds go to charities supporting adults, like me, living with dystrophy in the UK.

Shop now on Etsy


A forgotten people HMD 2011

Archived  from my previous blog.


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]


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.



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.



Never forget.

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.



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.

Bosnian widows grieving at 11 July 2010 funeral.JPG

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.

Banana and chocolate bread


Just plain yummy. Fluffy with gooey chocolate.

Mix 200g of brown sugar with 55g of butter. Add 3 ripe bananas, half a teaspoon of salt, a pinch of nutmeg, cinnamon and mixed spice. Beat in an egg and combine 250g of self raising flour. Put as much choccy in as you like! 

Cook it in a loaf tin at 180 for 1.5 hrs.

The top should be crispy and the inside fluffy 🙂 . 


Not easy but I voted

Last general election I walked to our tin pot shed of a village hall to vote. It was a bumpy walk involving lots of crossing the road to find dropped curbs. There are about two parking spaces at the hall which is why I decided to walk but it wasn’t something I wanted to repeat again. Even worse was the 90 degree turn to get in the door from the ramp – and a door lip that my assistant had to half lift me over. 

So this year I thought I’d try the easy way and apply for a postal vote. What a faff that turned out to be. I didn’t realise the process took so long or I’d have applied sooner. My card said to phone the local helpline to register. After waiting several minutes listening to rubbish music I was told they’d printed the wrong information and I had to apply on line.

Next I had to download the form, print it, fill it in and post it! I didn’t have time to mail it so heard I could email it. It took all day to find this out. I had to email my local registration place and ask where to send it. In the end I received an address, took a photo and hit send.

I heard nothing to say they had received it. My papers came in the end – not an easy process all in all.

Wildlife web cams now up for Spring/Summer



This is my new page where I will be putting photos and web cam footage of wildlife in our garden. So far we have hedgehog cam and Boris Box (Blue tits). I record footage and post it that day or as soon as I can. I hope blog followers might like to join me!

Our garden has been home to many birds, sparrow hawk, slow worm, foxes, hedgehogs and a range of bugs and insects!

Evening out to see Ennio Morricone



On Thursday we had our first trip to the O2 arena to see My Life in Music.  Ennio Morricone took the orchestra through some of his famous movie scores. Many were done well before our time in the 1960’s but I was pleasantly surprised that I recognised about half of them. You might have heard of the most recent films to use his music  – Chi Mai, Casualties of War and The Mission. If you haven’t heard of them – then you will almost certainly know then amazing theme tune of The Good The Bad and The Ugly.  He writes very emotional scores on themes of war and slavery for example – we had to cover his work when I did GCSE music. However, I obviously paid little attention as I didn’t realise that Chi Mai which I’d been studying for 2 years was composed by him. Hmm Fail.

We had seats very close to the orchestra and didn’t really know what to expect. Morricone never spoke once – just came on and got on with it. We had no clue who the orchestra were or the soprano singing (which was apparently Susanna Rigacci – and she was amazing). The Guardian described the sound she made as a human theremin … which is rather good. I’d describe it as akin to the vocal range and sounds from Star Trek the original series theme tune.

We also had a bit of a back stage tour in the quest for the loo and to get to our accessible seating area.  The accessible seating was good – one of the few times we could actually sit next to each other to see a concert which was nice.




A step backwards in wheelchair transportation?

When I saw this I cringed: Drive away car invented

It’s basically a single person electric bubble car where wheelchair users can enter in their wheelchairs through the automatic ramp at the back, and then just drive away. How amazing is that – the inventor gave up her job to set up a company to make these cars which are steered by a motorbike-style handlebar and costing only $25.000.

WHOAAA ….. hang on a moment, I can do better than that!

I have a car, where I also stay in my wheelchair!

I also wheel straight in the back up a ramp (which could automatically fold up and the doors close if I needed it to)!

If I were medically able, I could also drive off. (I can’t drive so others drive for me).

Not only does my car pootle around the town locally – I can drive on main roads and motorways! It doesn’t end there – even more amazing is that rather than drive round as a lonely single wheelchair user – I can be in the car with friends, family – and even carry luggage to go on holiday or put my shopping in the back. All for around £7-8 thousand pounds. Match that then bubble car.

Thinking about it – handlebar steering, electric vehicle….. isn’t that called a mobility scooter?

I think I have the better deal, socially and financially with my car and power wheelchair combo. Good luck America with your new invalid carriage for single people with no friends!

Disability, Torture and Human Rights

Today is Human Rights Day and this year’s slogan, Human Rights 365, “encompasses the idea that every day is Human Rights Day’.  These are principles of equality, fairness, dignity and respect which human beings aspire to – and which nations sign up to in the various Declarations.

I love Article One

  • All human beings are born free and equal in dignity and rights.

and Article Five ‘

  • No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.

However, according to this article some of the methods of torture include things that some disable people experience:

1. Denying access to the toilet so that people who had their movement restricted were forced to urinate and defecate over themselves was described as a degrading element of torture.

But it’s ok for an immobile person to lay unable to move in a urine soaked bed or chair because they don’t have access to care or equipment?

2. Being restrained in painful positions for long periods or being forced into ‘unnatural positions for extended periods’ is a method of torture.

Having to sit in a wheelchair, because of a severe impairment,  (or lay in a bed) that forces your back or limbs out at the wrong angle to cause nerve pain, pressure sores, dislocations etc is torture – yet people are in these positions for what could be years, with no pain relief, waiting for appropriate support/equipment/assessments. You may never experience a life without pain if you live in a country that doesn’t provide equipment. A pain where the only relief is death.

When your body is already twisted and contracted and placed in a position where you are not supported – the weight of your   body pulling against other body parts that refuse to stretch from their contracted state is like being on a rack. The agony is indescribable.

3. Sleep deprivation is defined as a method of torture.

Poor pain relief, pressure relief and postural support for disabled people can cause extreme sleep deprivation that brings on cognitive problems, hallucinations, memory loss, communication loss and many problems. Carers who might only get a few hours sleep experience sleep deprivation – night after night, month after month – yet this torture is ignored.

Where are our rights?

So spare a thought for the elderly neighbour, disabled friend, the person being the closed curtains who can’t leave their home …. because torture isn’t just the experience of terrorists or prisoners … it’s happening in our streets, in the UK, every day of the year and it’s not going to stop until it’s recognised.

Welsh cheesecakes


These go back to the 1800’s and I loved them as a child but never baked them myself.

They only take 10-12 minutes to cook and despite the odd name, contain no cheese.

The pastry base is crumbly and more like shortbread.

8 oz plain flour
4 oz unsalted cold butter
1 tsp baking powder
pinch of salt
cold water to bring it to a dough texture.

I used a muffin tin to lay out the tart shapes and form a deep well. Make them at least 5mm thick.

Then you plop in a bit of raspberry jam and cover with this cake mixture – only a teaspoon in each just to cover the jam. Cook on 200 C.

2 oz plain flour
2 oz unsalted butter
2 oz caster sugar
1 egg
1/2 tsp baking powder