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.

 

 

 

Advertisements

No Sh*t Sherlock – Researching the obvious.

Four months ago I participated in the following research…

“A questionnaire study examining how psychological factors impact on quality of life and mood in people with muscle conditions”

Firstly, it’s about time that people stopped focusing on the physical part of living with dystrophy and looked at the emotional impact. Mental well being is terribly overlooked. I thought to myself, this was finally being taken seriously.

However, a number of participants have been less than impressed by this research and fear it may turn into a report that merely states the obvious.

Your_mood_and_life_satisfaction

 

Here was one particular ridiculous question.

1) Let me think – is my life ideal? Yes is probably as good as it can be given the extent that MD affects me. However, is my life ideal? No, because it would be far better without MD!

2) Same as the above – define ‘excellent’ life conditions. If I wake up alive I consider it a good day and a most excellent start. Generally though, having MD does not make any day ‘excellent’ – I wouldn’t recommend it.

3) Am I satisfied with life? Ehm, in what sense? What does it mean to be satisfied? I’m warm, happy, content, not in continuous pain, loved, live in a nice place, fed and watered and in communication with the world around me – that’s pretty good?

4) I wouldn’t change anything about life if I could do it again?

This is a huge philosophical question. Would the said replaying of life still mean I had MD – or can I change my life starting from when I inherited MD at the point of conception? If I had to live it again with MD – would my life still be in the same country, to the same family, with the same education, forming the same friendships etc?

I can think of people I’d rather not have known, who have been a bad influence – but without future vision, I wouldn’t know it at the time and might still be acquainted with them – or do I get to delete them from my second life?

If I knew the NHS was going to be crap …. I could have started saving earlier for private treatment or equipment. I would have started applying for a wheelchair and profiling bed 3 years before I needed one so it arrived on time.

Are we talking more about a parallel universe with infinite combinations of my life?

Surely we could all think of some things to change if we started again and see if it was any better (not that you’d know unless your remembered life number 1)? A lot of how good life is depends on luck, chance, random influences – or maybe even faith in a path already planned to some extent? Ground Hog Day is proof of what can happen with just one day slightly tweaked!  Opportunities might be worse the second time around? Life is full of ‘should have, could have’ …. change one thing and everything after it could be altered for better or worse.

The fact is, I have the life I have. There is no option to live it again … so why bother even thinking about it! In fact, thinking about it only wastes the time I do have.

So, I’m probably thinking too deeply about this – but that’s just me. I couldn’t pick an answer.

I came to the conclusion that I would change ‘having MD’ to ‘not having MD’ for my second attempt at life – if only to avoid filling out stupid questionnaires like this one!