‘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

A Breath of Fresh Air – Post viral O2

There is nothing like influenza to boost catch up reading.

Ironically the book I chose to read was called ‘The Revelation of the Breath’ by Sharon G. Mijares Editor.

This collection of short essays on breathing did at least serve the purpose of ramming home to me why I was sick in the first place (unhealthy breathing patterns). It is a fabulous introduction to many breathing techniques from east to west, religious, spiritual and medical.

What I particularly liked about it was an article on breathing for Aikido by Darrell Bluhm Shihan.

I really like aikido but have never read up on it in particular because my teacher who is a bit of a traditionalist, put the emphasis on ‘doing’ not ‘reading’.

When I asked if there were any books he recommended he told me in no uncertain terms that it was practice not reading I should be concentrating on.

Fair point really.

But this book is really good  at explaining breathing techniques, their purposes and the philosophy, physiology and psychology behind them.

I was particularly taken by Buteyko for asthma, sleep and apnoea, and Rebirthing completely reframed birth trauma. The section on Freediving was quite revealing. Personally holding my breath is not an area I have ever explored (one of the diving instructors I met said that underwater diving and epilepsy aren’t a good gas and air mix).

Maybe I’ll just have to practice pausing between air intake and exhale for now. There are lots of rhythms to use after all.

Breath can be energising or relaxing, exciting or tranquil. Huffing and puffing can be quite good fun 🙂

I like that someone took the time to write about how breathing can be a revelation.

Make of it what you will I hope you enjoy this book as much as I am.

Here is a link to view it, also available from Amazon.

http://www.sunypress.edu/p-4912-the-revelation-of-the-breath.aspx

‘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

Pushing The Boundaries – Epilepsy and Karate part 1

Wearing a Gi (karate suit) is a bit like going on camera because you gain a few pounds.
What on earth was I doing?
My first brush with a Dojo (Japanese martial training hall) was when I was 12. It was my good friend (or fiend depending on how you look at her) who thought it would be a good idea to go and train with or local karate club under Sensi Roger Sayce.
Roger was well loved by everybody who he taught and to this day I will never forget how every time he saw me he would ask when I was going to start training again.
So it didn’t last long.
Roger never gave up on me, if only he were alive today I would be able to tell him how much I now appreciate this and thank him.
There were a couple of reasons training came to an end. One was the distance and effort required to get to town for after school training (a mile to a milk stand outside a farm, 12 miles to town with my neighbour who was going training and her very kind dad who offered me lifts), Seizures and medication and also the grading examiner who was a bit scary. As a 12 year old I think I started shaking when he started shouting and shook all through the examinations – just two of them in two years. I was not brimming with confidence as a child and so I was quite happy to go and train without re-visiting grading’s (where you get a shiny new belt).
Mum and Dad were not enthused by my new found hobby and steadfastly refused to support me in my pursuit of ‘violence’. Unfortunately they missed the bit about fitness, discipline, confidence, self -defence, spirit, etc.
Eventually after a couple of years I stopped training at the level of temporary red belt or 8th Kyu.
Years passed and I declared I would start karate again ‘over my dead body’.
Time passed and my good friend married someone who also eat, slept and breathed karate. She and everyone else I started training with reached dizzying heights of ninja skills and I just got more and more sick.
And so, years later, I started karate training once more for a large number of reasons.
After being described by my friend’s husband as a ‘tai chi tree hugging hippie’ I thought I should check out the local club once more (pride in NO way played a part).
In all seriousness there are good reasons to train with people who seem to have turned out confident, self -assured, independent, assertive individuals. When faced with life’s problems they all seem to stand firmly in the face of adversity.

What did I have to loose?