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?

 

 

 

 

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