fire in the blood.

Make Wealth History

This week has seen some excitement over the possibility of the first case of someone being ‘cured’ of HIV, generating a lot of hope and expectation for future treatments. This week has also seen a little attention on the story of HIV drugs in Africa, which is a much darker story. It’s been told for the first time in a new documentary, Fire in the Blood, which is currently screening in Britain.

It’s the work of Indian-Irish historian and filmmaker Dylan Mohan Gray, and it tells the story of how the pharmaceutical companies blocked the sale of cheap anti-retroviral drugs in Africa. It protected their profits, but caused an estimated 10 million unnecessary deaths. That’s a crazy number of deaths that could have been avoided. You would need to add the Holocaust and Stalin’s gulags together to match it. It’s little wonder Gray refers to it as ‘the…

View original post 49 more words

‘Disability is a crushed spirit’ as defined by Aimee Mullins –‘Ability’ or ’Disability’ what is it all about?

For me disability is about education and empowerment. Of myself and others.

Not talking about disability, in my case epilepsy, leads to fear and ignorance, it creates taboo and prejudice.

Not embracing epilepsy or disability as a part of me would be to deny my whole self. Until it sits alongside me as my reflected other half I am not whole.

Treating disability with a ‘Fight Club’ mentality (The first rule of Fight Club is: you do not talk about Fight Club) (1) will not lead to health (you only have to watch the film to see how destructive this type of thinking can be! (2)).

Disability for me is about acceptance of myself, but in the wider social context to be accepted by society would be the ideal.

Not accepting our differences leads to disharmony within the self and society.

There is a fine line between ‘accepting’ and ‘labelling’ disability. It is about how we see ourselves as much as how others see us.

http://www.drfranklipman.com/aimee-mullins-redefines-the-word-disabled/

Frank Lipman’s blog about Aimee Mullins is one of my favourite posts from 2012. In it she talks about all the disempowering negative language that is associated with the word ‘disability’, and gives her new definition.

One of the most frustrating things about having epilepsy is people who tell me I’m sick. Actually, they often never get as far as the word disability, I am ‘sick’.

Disability its self is a big label to be handing out, but sickness!

Normally, I might add, my personal experience of the word ‘sickness’ is that it is banded about in the context of work!

I am NOT sick, I am not DEAF, I am epileptic, but I am capable, I am intelligent and I can use my voice and prove everyone who ever said I can’t do something that they are wrong about me! I don’t define myself by my disability but it really did help to make me who I am today.

‘Disable’, (verb)

To crush a spirit, to withdraw hope, to deflate curiosity, to promote an inability to see beauty, to deprive of imagination, to make abject.

Ant.  To make poss-able

Aimee Mullins 2009 new (and better!) Thesaurus  2009 Edition

Here she is in her TED talk, which is titled ‘The Opportunity of Adversity’.

She’s my heroine.

1)      http://uk.imdb.com/title/tt0137523/quotes

2)      http://en.wikipedia.org/wiki/Fight_Club

some of you may be interested in making a contribution to this post about ‘abiltiy’ or ‘disability’. I know I am.

The Autistic Voice

Hi Readers

Playing devil’s advocate today…

I recently gave a session on autoethnography and reflexive writing at Sheffield Hallam and I included several examples of autoethnography of my own.  One example was some reflexion I had done during the Paralympics.  Someone suggested I put it in a blog to encourage debate:

‘So the past month has been about planning, and watching the olympics and paralympics, which have really got me thinking about disabilities – in fact it is not about disability but all about ability.  Even the language used is interesting – political correctness talks about people of restricted height for example, but paralympics talk about dwarfism.  Language is much more direct, honest and matter of fact.  Is PC for the benefit of the ‘inflicted’ or is it to make the public feel more empathetic to individuals’ feelings?  Do we worry too much about upsetting people?

One amputee…

View original post 165 more words

Invalid and Invalid – A walk on the dark side of health

One word I hear mentioned a lot in relation to health is invalid.

Not so much as a description of a sick person, but from the mouths of the sick I hear a lot of;

‘My feelings aren’t valid’

‘I feel invalidated’

‘No one listens’

‘I need an advocate’(1)(2)

From the vulnerable I hear it crying out like an echo, coming up again, and again, and again.

It’s like a sound that isn’t heard.

Why do sick people feel invalid? Why do we need advocates to speak for the sick? Does being sick mean that you can’t speak?

Or does it mean that others don’t hear what is being said?

There are lots of situations where having another person or ‘advocate’ to fight for someone else’s corner is necessary, not just in legal situations but in health settings as well.

I decided to look at where the words invalid and invalid come from.

One word two different meanings. (3)

One is ‘invalid’ in relation to sickness, one means ‘invalid’ in relation to having no cogency or legal force.

How does suffering from disability, illness or injury lead to invalidation?

How did sickness become to invalidate? (4)

As I read around the subject I came across this article http://eqi.org/invalid.htm it defined invalidation in the following terms;

‘Invalidation is to reject, ignore, mock, tease, judge, or diminish someone’s feelings. It is an attempt to control how they feel and for how long they feel it.’

‘Psychiatrist R.D. Laing said that when we invalidate people or deny their perceptions and personal experiences, we make mental invalids of them. He found that when one’s feelings are denied a person can be made to feel crazy even they are perfectly mentally healthy’.

‘Invalidation goes beyond mere rejection by implying not only that our feelings are disapproved of, but that we are fundamentally abnormal. This implies that there is something wrong with us because we aren’t like everyone else; we are strange; we are different; we are weird.’

‘Psychological invalidation is one of the most lethal forms of emotional abuse. It kills confidence, creativity and individuality.’

The article ends with;‘I still remember many years ago when I was driving my car thinking about how people in my family would so often argue and debate about everything. I stopped the car, opened my laptop and wrote in a large font ‘

‘Feelings Are Not Debatable’

I found this article very sobering,

Not only can people feel invalidated when they are unwell, but by actually invalidating people’s emotions healthy people can become sick.

The article actually links this type of invalidation to personality disorder. (5)

This made me think about another area of invalidity.

In Britain there has been a welfare state (6), which has supported the vulnerable and provided subsistence level state benefits to live off.

In 2008 a new benefit called ‘Employment and Support Allowance’ was introduced to replace the old ‘Incapacity Benefit’.

As part of ‘Employment and Support Allowance’ sick people have to complete a questionnaire and sit a medical assessment.

‘Charities and disabled groups say the assessment is “not fit for purpose”, with appeals against 40% of claims that are turned down. They cite cases of suicide where the coroner has said denial of benefits was a contributory factor. The BBC’s Panorama this year found a case of a man who died of heart failure just 39 days after being found fit for work’ (7)(8) Randeep Ramesh Social Affairs Editor The Guardian Thursday 13 December 2012

So, invalids who don’t have their health needs validated and recognised by the state are actually dying because of the lack of recognition or validation of their health needs for benefit purposes.

In terms of health I would argue that validation of health needs, experiences and emotions would lead to a healthier society.

If invalidation leads to sickness I would argue that currently our society is heading in the wrong direction, people can only be well when they are valid.(9)(10)

1)      http://www.mind.org.uk/help/rights_and_legislation/mind_guide_to_advocacy

2)      http://en.wikipedia.org/wiki/Advocacy

3)      http://www.thefreedictionary.com/invalid

4)      http://www.thefreedictionary.com/invalidate

5)      http://en.wikipedia.org/wiki/Personality_disorders

6)      http://en.wikipedia.org/wiki/Welfare_State

7)      http://www.guardian.co.uk/society/2012/dec/13/disabled-man-government-court-benefit-test

8)      http://www.citizensadvice.org.uk/not_working.htm

9)      http://www.thefreedictionary.com/valid

10)   http://ahmritanaturalmentalhealth.wordpress.com/2012/12/10/recovery-living-the-experience-of-hope/

Health Problems and Emotional Wellbeing – Prevention Not Cure

In his forward to Chinese Medical Qigong page 1 (1) Marc S. Micozzi M.D. PHD states “current political debates in the US about healthcare “reform” amount only to “rearranging the deck chairs on the SS Titanic”.

Personally I would extend this description of healthcare to Britain as well, because in my experience current welfare and NHS “reform” amounts to the same superficial, short sighted rearrangement. (2)

In global economic recession poverty and therefore health problems are on the rise.

In the book ‘Violence, inequality and human freedom’ by Peter Iadicola and Anson Shupe; ‘structural violence’ is described as ‘violence of institutions’, ‘for example, violence can be an outcome of how we have organised society in terms of access to basic necessities of survival’ (3). The implications of which are limited access to medical care and education for the poor.

In the wake of the economic sinking ship there is the question; how to tackle health problems when poverty is on the rise?

The NICE Guidelines for clinical excellence (4) lay out the ‘stepped approach’ for mental health problems and recommend therapies such as Cognitive Behavioural Therapy, counselling and access to health care services which should be available to combat common mental health disorders. NICE lays out all guidelines for healthcare in Britain.

It is unfortunate that the resources to provide for these guidelines are being cut, or in some cases are simply not there at all (5). Additionally changes to the benefit system are being made which negatively impact upon the emotional health of the sick and disabled (6).

The situation is not helped by competition for the little work that is available. It is easier to manage health with an income and something to occupy the mind such as a job, in my experience.

What possible solutions are there to these problems?

Could the application of systems theory (7) be the beginning of change in bringing information about health to the masses?

In her book ‘Your Health is Your Wealth’, Jacqueline Harvey appears to be supporting the view that self-education and self-care and responsibility are the way forward in terms of a long term solutions to integrative health. (8)

I support this whole heartedly, as in my experience holistic health practices such as yoga (9) and tai chi (10) are very beneficial for health and promote self-care and self-education. They encourage the exploration of body, nutrition/diet and psychological personal development.

It would be nice to think that children have the opportunity to access these types of exercises and mindfulness practices, as well as physical education and sports so that in the future they did not need to access Dialectical Behavioural Therapy (11) for health conditions like personality disorder. DBT has some basis in Buddhist mindfulness practice. Would it therefore be cost effective to build mindfully based approaches to health into the education and health system from an early age?

In the circumstances the building of networks, social or otherwise, and communities on a local, national and worldwide scale; made up of existing established resources, practices and health resources seem like the way forward in tipping the balance towards preventing health problems and managing conditions.

I think I am a little bit ‘evangelical’ about promoting personal health care exploration.

God bless the World Wide Web.

And finally:http://www.drfranklipman.com/motivation-and-personality/ an after thought but very relevent.

References

(1) Chinese Medical Qigong – Editor in Chief: Tianjun Liu, OMD Associate Editor in Chief: Kevin W Chen, Ph.D.

(2) http://www.huffingtonpost.co.uk/vincent-brogan/private-healthcare-and-th_b_1909057.html?utm_hp_ref=health-and-social-care-bill

(3) Violence, Inequality and Human Freedom by Peter Iadicola and Anson Shupe ISBN:0-7425-1923-6 Rowman and Littlefield Publishers, Inc

(4) http://www.nice.org.uk/nicemedia/live/13476/54520/54520.pdf

(5) http://www.guardian.co.uk/society/2012/jul/11/benefit-reforms-penalise-disabled-people

(6) http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Benefits/FailedByTheSystemReport.pdf

(7) http://en.wikipedia.org/wiki/Systems_theory

(8) http://www.amazon.co.uk/Your-Health-Is-Wealth/dp/1401916287

mine came free with http://www.ommagazine.com/ October 2012

(9) http://littlewindmillyoga.com/2012/10/21/yoga-the-ultimate-freedom-trailer/

(10)                    http://www.taichimaster.com/tai-chi/the-tai-chi-tipping-point/

(11)                    http://www.priory.com/dbt.htm

‘It’s character building’ – Epilepsy and Karate part 2

I read an article written by one Sensei analysing how she felt following a car accident where she injured her back quite badly and found her-self lying in hospital thinking ‘none of this is as bad as a training session with our Sensei’.

Under the firm conviction that ‘it’s a man’s world a girl’s got to be able to look after herself’ I put aside my reservations about Karate and joint care to have a go as an adult.

As a child I struggled to hit people with conviction. Not being the slightest bit athletic I was happier doing kata as it meant remembering patterns or dancing around as I saw it (all wannabe ballerina’s do!). I only learnt 3 kata because I didn’t stay long enough to learn any more.

As an adult, thankfully, like ‘Cat- woman’ in the latest Batman film ‘The Dark Night Rises’; I don’t feel quite so strongly about not hitting people. Preferring the approach of ‘varying degrees of massage’ I did feel strongly that it is important to be able to defend myself.

I went to see the film ‘Lawless’ last night (based on a true story) (1). The story of 3 brothers, the youngest of whom is Jack Bondurant (played by Shia Lebouf) who wouldn’t hurt a fly.

The film is interesting from the point of view that we see the events that change Jack.

How violence and injustice cause people to behave and the outcome at the end make for a gripping movie. What is more interesting is that the final straw is not violence inflicted on Jack, but against those he loves that is the emotional turning point.

The film is a study of fear and survival at a time of great hardship.

Physical and psychological attack is something that happens in life. No-one wants a big sign over their head saying ‘kick me’.

Sickness and disability in particular make people vulnerable to harassment, discrimination and abuse.

The way sick and disabled people are viewed in Britain currently is a whole new Dickensian novel. (2)

The Paralympics have just been hosted In Britain and while this has brought much discussion and debate in our country about ability in the context of disability; society has a long way to go before everyone is treated as equal. (3)

My own personal ‘fight back’ campaign began with Karate as a child and somehow stayed in my head as a ‘Nemesis’.

If I could draw a line pinpointing where it all started to go pear-shaped at 12 years old after falling down the stairs from having a seizure then Karate was the defining event.

Ultimately to beat epilepsy it felt like I had to do karate.

If I were a computer it would be like going in and re-writing the programming. Who doesnt need a copy of ‘Toumb Raider’ amongst the microsoft office software?

Is this going towards the ‘Dark side’ or facing up to my own demons?

Personally to me it felt like I was addressing something within myself.

I wake up every day and look at myself in the mirror. I see my best friend and my worst enemy. That is before I even have to deal with anybody else.

When I first started training I was very ill. I purchased a t-shirt with a superman ‘S’ on the front. It was like I needed to create my own personal alter ego to make me superhuman and to protect me.

Nearly 5 years down the line I can honestly say that karate training has helped me keep a job (despite discrimination), keep my home and given me the help I need without having to resort to violence.

I think that everybody can find their inner ‘grit’. For me I just needed to find the people who could show me the way.

There is no such thing as superheros who can protect us.

If we are lucky we have friends who care enought to look out for us.

It would be nice to think that there is someone out there that would fight for you when your screaming but no-one can hear you.

1)      http://en.wikipedia.org/wiki/Lawless_(film)

2)      http://www.ukuncut.org.uk/blog/press-release-former-paralympian-joins-activists-to-target-atos#.UDaRnwwg0j0.facebook

1)      http://apps.facebook.com/theguardian/commentisfree/2012/aug/23/paralympians-state-help-disabled-benefits-cut