Glowing Christmas lantern cards 


​​​Instagram video link 

These cards are starting to go in my shop – and I’ll be making some in my Itsy Bitsy  range of A7 cards very soon.

These pretty lantern cards are designed with an opaque middle layer, made from parchment. When a battery powered tea light is placed behind, they have a beautiful glow. I like to use a flickering warm orange style tea light so it looks like a flame and creates some movement.

Designs will include:

  • Snowman
  • Snowflakes
  • Nativity 

and can be pre ordered on OhHowLovelyGifts on Etsy UK.

*tea light not included.

Crafting with a difference

Hello, I’m Louise and this year I wanted to show people that it’s still possible to create beautiful artwork with a progressive impairment like Muscular Dystrophy.

I have Limb Girdle 2C which is similar to Duchenne. My muscles have gradually lost their strength affecting almost every part of my body.

I’ve been crafting for for around 25 years and over this time I’ve had to adapt to losing the use of my body – but I’m still able to make hand crafted items.

Sometimes I have to shop around to buy products that are easier to use or decant media like glues and paints into different bottles. My grip is barely strong enough to hold a pen and I can’t bend my finger tips to pinch hold things well. I’ve got round this by using tweezers as prosthetic finger tips.

Other times I have to adopt a different method compared to someone with full hand use. Not being able to lift my arms up and moving my hands by crawling with my fingers across a surface, means I have to be very organised in my technique. e.g. Always painting an item or adding delicate details from the top down so I don’t drag my hands over these areas.

I work primarily in paper and mixed art media making dimensional greeting cards, pictures and gift card voucher / money holders.

These hand made items then go on sale in my Etsy UK shop (OhHowLovelyGifts) to raise funds for three charities that support adults living with MD. I’ve also set up a Facebook page to showcase my work and chat with buyers and crafters.

I get so much enjoyment from seeing them come together and the lovely comments from people who receive them. I work with my personal assistants who do a lot of the practical things for me.  They find the materials (I point to photos of my materials kept on my phone), pass me items, open bottles and feed things through my cutting machine. Describing what I need is very tiring so it can take me many days to make a greeting card – often over a few weeks. It might be slow going but it’s incredibly rewarding for both of us.

When I lost the ability to breathe properly and started using a ventilator, the nose piece kept blowing my paper and art materials across the table! It’s funny the first time round but not when your working with fine powders!! My husband adapted it for me so it blows away from my work surface. Sometimes you have to think of ways around things – do things differently through invention and modification.

I would encourage anyone to have a go at paper crafting because of all the benefits it can bring. Creating art is good for the mind, gives a sense of accomplishment and is immensely enjoyable .

The three charities I’m supporting are:

  • Muscular Dystrophy UK

http://www.musculardystrophyuk.org/

  • The Neuromuscular Centre

http://www.nmcentre.com

  • DMD Pathfinders

https://dmdpathfinders.org.uk

Dogs, Dystrophy and Charity

Harrison_s_Fund_AdvertisingYou might have seen this advert recently – and fallen victim to what many have felt is false advertising. The advert was not to save a dog as it first appears – reading on you discover it is the latest controversial advert from the charity Harrison’s Fund.

Harrison is an 8 year old boy who has Duchenne Muscular Dystrophy and his father is CEO of the charity.

 

 

His father says on their website:

“I’m sorry if some people find our tactics upsetting, but the awful truth is that my son is dying and I’m willing to do whatever it takes to save him.”

 

This particular campaign involved two digital adverts – one featuring the dog and another a picture of Harrison. The idea being to show that people are more willing to support animal charities than those for children. Not surprisingly the one with the request to save the sad looking dog received twice as many clicks.

A debate then followed after his father followed up the publicity with further articles about the reasons behind the advert like this one in the Telegraph and also in the Huffington Post (and possibly elsewhere) – generating huge publicity for the charity.

It follows a word wide debate on their previous campaign “I Wish My Son had Cancer”.

Harrison_s_Fund_2Outrage

The first campaign was a shocker – and many of my friends who have Duchenne and similar types of dystrophy were as outraged and disgusted as me.

  • Disability Hierarchy

This is basically the damaging notion that one impairment/disability is more deserving in need or ‘worse’ than another (or gains more attention or legitimacy than another).  A social pecking order developed of ‘worthiness’.  It is one of the many disability research areas which looks at the effect this has on disabled people and society as a whole. A hierarchy can be influenced by how visible the impairment is, life span expectations, ‘curability’, pain levels involved or things like culture, religion, ethnicity and even politically.

e.g. it impacts priorities and moral issues e.g. if it is worse to live paralysed than it is with depression (according to our personal hierarchy of ‘what is worse’), we should allow paralysed people to die in euthanasia legislation, but not people who can’t stand life with depression – because its ‘not as bad’ or they are mentally impaired (lower down in the order).

A pair of Deaf twins, who were going blind, were permitted to be euthanised in Belgium because the government understood ‘how unbearable’ life would be – despite many Deaf Blind people living fulfilled lived. People often make choices like agreeing to vote for assisted dying laws, because they are ignorant of the truth and have internalised a hierarchy.   All people who feel they are in an unbearable situation should have support – but sometimes a person with a mental health condition gets prioritised for therapy and medication over someone with the same feelings that are put down to inability to cope with physical problems (and often not offered mental health support).  One is offered support to prevent them from killing themselves – the other is encouraged to pursue their request to die.

Dangers

Hierarchies allow human judgement of others, and judgement of our self worth to influence our decisions and life choices – often based on inaccurate information.  This is really dangerous. E.g parents are more likely to choose abortion of a child with Downs Syndrome when given negative impressions of what their life could be like as opposed to those who have had balanced information or met someone living with that condition.

As such, comparing illness or disability, and promoting one as being worse than another can be very damaging – especially when the effects of most conditions vary considerably from individual to individual.

No comparison

Comparing one illness to another and creating a hierarchy of impairments with the ‘worst’ at the top is never helpful.  How can any parent wish their child had  cancer? Cancer might take a child’s life yet some people with Duchenne live into their 40’s with improved health and social care.   A number of people have had both cancer and dystrophy…. and that’s pretty rough too.

You can not define what is ‘worse’ unless you are perhaps comparing only life span where ultimately there might be a chance of cancer treatment to be free of that illness compared to a genetic condition with no cure.

Long life shouldn’t be the ‘goal’ – quality must count for something – yet so many charities focus purely on finding the golden ‘cure’.  I wonder, if in 10-15 years time, when Harrison might be thinking of perhaps going to University, living in his own home, dating, getting his first job … will they regret campaigning so hard for a cure that still hasn’t been found and not looking to support him in his adult life choices as well?

  • Misleading?

The charity was saying things like “no treatment, no cure, 100% fatal … certainty of a very short life, no drugs help”.

Life is 100% fatal so there is no meaning in the word other than to draw the reader to register ‘fatal’ as ‘really deadly, act now’.

Let’s look at the statement that says there is no treatment. There are physical therapies, surgeries and some medications like steroids that are beneficial and prolong life. Yes there is no ‘cure’ but there is no certainty of  short life … like I said, I know many people who are 40 + years old and still alive.

If life was so bad, how is it that people I know with Duchenne are Drs, artists, musicians, photographers, authors, web designers, managers …. not bad for a 100% fatal disease? Yes, I have friends who have died in their 20’s and 30’s but not before they gave life a great shot, some were married, a few had children, just average everyday people living life. Let their lives be the hope we look towards.

  • Hope in adults living with Duchenne

I feel charities like this can be misleading in the picture they paint of living with the condition. I also feel for Harrison, growing up in a world of ‘doom’ being at the centre of a charity which speaks little of the positive life you might have with a rare disease.  I hope as he grows older he can meet with young men and women who will inspire him to look beyond these strong words and live in the hope of the great things that are possible. I hope other children with Dystrophy don’t see these campaigns and live in fear of death before their parents have had the opportunity to talk with them about their future in a balanced way.

  • Campaign success

However, the campaign did what was intended and donations went up 300%. Effective yes, but it came with a price – the cost of disregarding the social consequences concerning how reactions to the advert might affect children and adults with dystrophy and other impairments.

And the campaign about animal charities getting more money than a ‘dying child’? 

Did they really need the excuse of ‘let’s see if animal charities would get more funding’ to run this shocking campaign? Surely, it’s common knowledge that charities representing specific types of rare diseases are not going to get nearly as much funding as those for animals (or even human charities for say cancer research)?

  • Charity giving has a hierarchy too – and animals generally trump humans with rare conditions.

IMG_4562

Yes, people care about animals, chances are, most homes have a cat, dog  … large numbers of people can relate perhaps to a distressed animal because they have them themselves.

People who don’t have children with dystrophy or a disabled child, can not relate as easily if at all.

People donate to charities which personally touch them or they feel drawn to …. whether it’s saving children, donkeys, rain forests, snow leopards … that is just the way human beings are.  You can imagine your £5 buying a pet toy or dog food …. but sending £5 to a charity that funds research is hard to visualise exactly what you are paying for. E.g it feels psychologically better to know you have paid for one meal for a dog or even one vaccination for a child in Africa  … compared to contributing to a small part of the hourly wage of a research scientist.  Many people give to feel better and giving to research looking at a single medical condition like Duchenne (or even a single genetic type of Duchenne) is simply not as gratifying as ‘buying a vaccine’ that will definitely save an African child’s life.

  • The dangers of focusing only on research

It’s also a sad fact that people will choose to ‘save a child’ over ‘save an adult’ with the same condition. Only one charity I am aware of supports adults specifically with Duchenne (and is run by people with Duchenne) – a forgotten generation because people were so sure they would die before adulthood or a cure would have been found by now.

Does that mean that charities should pull out the pity slogans, be dishonest or use shock tactics to get your money? Do we like to feel duped? No we don’t.  I think charities should be responsible in how they portray dystrophy or any other condition they are using money for – and engage with the public in a decent and honest way.

I would not like to ‘take a cure’ if it was funded through lies, manipulation and campaigns which were socially and morally questionable – but maybe others are ok with it?

 

 

 

 

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.

 

 

 

Unaware of Awareness Days

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Yesterday was International Wheelchair user Day (IWD). First I’d heard of it – which is strange considering I’ve used a wheelchair for donkey’s years and have a degree in Disability Studies, years working in disability advocacy/campaigning/social care etc etc.  I would have thought I’d have come across it somewhere lol. Apparently not.

The fact is – it’s a made up thing i.e it’s not one of the United Nations Days or something linked particularly to a charity – someone in the North East of England decided there was a need for such a day and chose March 1st. This then was promoted as a day to celebrate our wheely liberation which I think is in its fifth year.

People don’t seem to celebrate walking on legs day (anyone want to set that one up…? ) so I pondered over why I should be excited about celebrating wheeling around. Quite possibly because there is still a lot of stigma and misunderstanding about life as a wheelchair user – which is begging to be challenged etc.  Attitudes to users, quality of access to places, lack of innovation in chair design and function etc. We are still in an era where people pat you on the head or think that carrying you up a flight of stairs is ‘reasonable adjustment’.

I can see the potential in such a day.

It reminded me the other day of another group of people – who have chosen one of those awareness colours (green ‘because it’s the colour of  March’) and a date (March 21st) and called it Limb Girdle Muscular Dystrophy (LGMD) day.

That’s what I have (of which there are many genetic types) but my first thoughts were ‘what’s the point’. Lot’s of people I know have liked the FaceBook group. In my line of thinking, unless you ‘do’ something like have some kind of national campaign, media coverage, advertising or do some kind of events then what will be gained?

I suppose if someone made up some ribbons and got friends or family to wear them at work or something they might attract a bit of attention – but if I see someone wearing a ribbon I can’t say I ever really know what all the colours represent or ever ask why the person is wearing one. I’m no more aware than if they didn’t wear it.

I remember the red one is for AIDS, pink is usually breast cancer but I really don’t know what the other colours are.  As for people wearing green clothes – are they perhaps celebrating St Patrick’s Day or just like the colour green?

One of the things I do know is that Teal is the colour for Ovarian Cancer. I know this because my friend Dodie (who incidentally has LGMD) has OC. I have understood about this type of cancer through her life and friendship and the things she shares.

I think there is no better awareness then to live your life and let people learn along the way. Maybe, then, they can be motivated to help others, raise money or support the national charities like the Muscular Dystrophy Campaign who are really do make a difference to jo blogs like me!

Going on a bear hunt

Pudsey, Golf Balls and how accepting charity as one of those children in need made me feel.


Since Children in Need began, disabled people have embarked on a yearly bear hunt.

What is it that makes some disabled people hate it so much that they light bonfires adorned with Pudsey bears to mark the occasion?  

Of course the charity is not just about disabled children – but children who are in need for many reasons both in the UK and elsewhere. However, it is the disability related elements that have caused great concern and protestors are rearing their heads again in times when children’s services are being slashed in government cuts.

Since Children in Need began, disabled people have embarked on a yearly bear hunt.

What is it that makes some disabled people hate it so much that they light bonfires adorned with Pudsey bears to mark the occasion?  

Of course the charity is not just about disabled children – but children who are in need for many reasons both in the UK and elsewhere. However, it is the disability related elements that have caused great concern and protestors are rearing their heads again in times when children’s services are being slashed in government cuts.

Are charity events like this actually causing harm by the way they portray disabled children? Is it right to use pitying ‘pull at your heart strings’ pledge commercials? Certainly in the early days the life of a disabled child was shown as tragic, sorrowful and full of pain and sickness to get people to donate more money. (Think sad looking child with no hair, tube fed, cute dress, immobile against a background of slow, tear jerking music).

Then there is another angle. Think about a child who needs a wheelchair to get around or communication equipment – incredibly important for their development and overall independence. Yet many children are dependent, immobile or unable to have a voice because they can’t get the equipment.

Is Children in Need a way of using the kindness of people to support services and equipment that our underfunded NHS and social care services should be providing for EVERY child?

People won’t pay increased taxes so that more money can go into vital services – yet they give to charity so that a few lucky children might get support whilst the rest go without. I am not against supporting a charity – but that shouldn’t be the only way a child or family (or adult) can get support.

Read about a different perspective on Children in Need

Some disabled people will be campaigning today on Twitter and Facebook via the #CIN hashtag. Hear them out before you decide if you want to take part.

Here are some links to articles that relate to how disabled people feel about Children in Need and similar concepts.

• Transcript from Able Radio – Why hate Pudsey (2011)
Confessions of a Pudsey Kid (2009) – hear from Crimson Crip about being one of those children in need and the media portrayal of disabled people.
• Guardian (2006) – Pudsey’s time is up
• Disability Now – Don’t just grin and bear it – a disabled activists perspective

How accepting charity has made me feel.

I was about 12 before I got my first electric wheelchair. Before then I sat in a bright blue adult pram that people pushed if I needed to move outside the house. It was un-comfy, humiliating and I had no control over where I went or where I was parked. An application for an electric wheelchair was made to the local Golf Club who had been raising money to buy wheelchairs for disabled children.

One night we were invited to attend an evening where we would be awarded these ‘gifts’ by a sports personality. We had to sit in our chairs and pose for the obligatory ‘ thank you for changing my life’ photo that would feature in the next charity fundraiser and appear on the club house wall of good deeds. I felt like some kind of dog in a parade as we were posed in different places, congratulated and smiled on probably by some mayor or councillor. It was exciting yet at the same time I appreciated how a monkey might feel being gawped at in a zoo. I didn’t care much for all the attention and felt a bit like a performing dog but with less tricks. I couldn’t even steer it straight. Still, I had to go through the ordeal to get a chair so I smiled and pretended to enjoy it.

golf

I was hugely grateful for my first set of wheels – but not the way I had to go cap in hand and beg for it in the first place and go through the whole presentation thing.

No one asked us, the children in need, how we felt about this. We were just expected to smile a lot and travel round forever after promoting their golf course with the giant sticker they had welded onto the back of our chairs. We also had to put up with a golf ball for a joystick (yes a real ball with a hole in it [see picture] ). I felt used and abused as a piece of free advertising. I might have been young but I wasn’t stupid.

I wanted to hit the countless number of strangers who stopped me in the street to ask ‘oh is that a real golf ball?’.

I really hope things have moved on …