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Viewing entries tagged with 'unique experience'

Unique pair to fly pink to Mardi Gras

Posted by Philip Patston on 21 February 2010, 11:37 am in , , ,

Shaun and Anna

Sometimes all it takes is a common experience to realise that you are not as unique as you think.

Shaun McKinney and Anna Nelson met in April 2009, at the first design forum to establish Diversityworks Trust's Peer Support Network. Both share the experience of disability, though they prefer to think of it as unique function.

Shaun (24), a member of Rainbow Youth, is openly gay and Anna (30) is exploring her sexual preference. She also co-ordinates the Peer Support Network. read more...

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Negative slogan gives negative outcome?

Posted by Philip Patston on 6 February 2010, 8:24 am in , , , ,

The slogan, "Nothing about us without us" has been bandied around the international "disability" community for years and it has just been heralded, at the Disability Intergroup of the European Parliament and the European Disability Forum (EDF) in Brussels, as "the motto ... calling for a full participation of disabled people in all policies." It was described by the President of the EDF as "an historic day for the 65 million persons with disabilities" where inclusion "is becoming a reality."

Really? I think the only reality this motto is creating is exclusion. In terms of genuine participation in political change, disabled people still get "nothing" about us, and that nothing happens "without" us.

When are disabled people going to get it? Why do we keep putting negative ideas into the quantum field by using negative language? When we think "disabled", we get disabled. When we think, "nothing" and "without", bingo! We get it.

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Context is everything

Posted by Philip Patston on 11 January 2010, 12:00 am in , ,

Recently, my personal support PA (whom I legally employ) cut my fingernails. In order to stabilise my hand, I put my hand on her knee. Then, she filed my nails and, again to stabilise it, she put my hand on her thigh.

Now, of course this made for an interesting experience, unique even, and we laughed at the implications. She now has me over a barrel and, if I ever displease her, she'll have me in the employment tribunal on harassment charges.

All jokes aside, the situation is an interesting case study in the difference between behaviour (or experience) and context. It is a distinction that I think we could benefit from being more alert to. At the extreme end of the behaviour spectrum – killing another human being – we attempt get to grips with it by distinguishing between murder and manslaughter. We don't always get it right, though, because we only consider intent and we don't have a legal category in which to properly take into account the context of the killing, for example, in cases of extreme domestic violence where an abused woman kills her abuser.

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Ministry of Health funding: so close and yet so far

Posted by Philip Patston on 7 December 2009, 5:52 pm in , ,

Recently (well, over 12 months ago actually) I applied for Ministry of Health funding for an "innovative lightweight power add-on system for manual wheelchairs", called e-Fix, and a hoist to be able to get my chair independently in and out of my car. In November my application for the e-Fix was assessed at Priority 1 (and funding was released), but the hoist was assessed at Priority 2 (without a funding release date), which leaves me in a rather untenable situation.

With the e-Fix attached to the chair I am unable to get the wheelchair in and out of the car without the hoist because of the weight. This means I am unable to access work independently, which involves running workshops, speaking about diversity, entertaining and attending meetings throughout Auckland and often Northland and Waikato.

I am unable to propel a manual wheelchair, so am unable to engage in work in public without the assistance of a support worker, which leaves me dependant and unable to be autonomous.

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This sent wee shivers down my spine...

Posted by Philip Patston on 25 November 2009, 9:23 pm in , , ,


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Malcolm Gladwell on how we are all prone to autism

Posted by Philip Patston on 15 November 2009, 1:28 pm in , ,

In this 15 minute clip from the audio version of his book, "Blink", Malcolm Gladwell describes a fascinating experiment into the nature of autism and suggests, as I've always suspected, that we can all be a little bit autistic every once in a while...

Click here to listen »

(choose "Tiny" setting for quicker loading)

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Music video embraces diversity

Posted by Philip Patston on 5 November 2009, 8:44 am in , , ,

Kiwi Band Minuit has included over a thousand photos sent in by New Zealanders in their new single's video.

"Aotearoa", with the catchy chorus, "You and Me, we are a New Zealand", also features footage from NZ's national libraries and film archives.

I sent in a snap of me on the beach in Ahipara and it features at 3:16 on the YouTube clip. Click the pic to see the whole video.

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NZ Govt compensates for circumstance over experience

Posted by Philip Patston on 15 October 2009, 8:32 am in , , ,

Once again our government has opted to compensate common circumstance over common experience. By wiping suicide from ACC's responsibilities, putting it in the "sickness" rather than "accident" bucket, our leaders refuse to value the fact that grief is the experience common to people who lose loved ones, no matter the cause. They choose instead to recognise the more common grief-causing circumstances of car crashes and work accidents and ignore the more unique circumstance of suicide.

This is no different to the distinction made between the circumstances of birth- or illness-related and accident-related dysfunction (disability). People who experience disability due to birth trauma (like me) do not get the same level of financial recognition as people who have a similar experience of disability due to, say, a brain injury during adulthood. Again, birth trauma goes in the "sickness" bucket and is compensated at a lower level than accidental trauma, through Health and Social Welfare funding rather than ACC.

I think it is important to acknowledge the subtle fear of dysfunction (dysfunctionphobia) at work here. Accidental dysfunction is seen as more worthy of financial compensation than congenital dysfunction. Why? Because accidental dysfunction presupposes the loss of the hallowed state of normality, or common function. Accident compensation says, you poor thing, you'll spend your whole life remembering what it's like to be normal. Health/welfare funding says, you never got the privilege - get over it. Another unstated belief is, I proffer, that somehow birth- or illness-related events could somehow be avoided, whereas accidents just happen.

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Defining complex ideas simply

Posted by Philip Patston on 3 October 2009, 3:13 pm in , ,

Complex emotions and concepts like fear, love, diversity and wisdom can be hard to understand and are often misunderstood. Here are some of my own simple definitions, that I use in my coaching work with individuals and team building with groups, to explain these complex ideas in a straight-forward and creative way. 

Fear: Experience with the absence of love
Anger: Fear of loss of control (for self or others)
Sadness: Fear of being alone (for self or others)
Depression: Unexpressed fear (or love)
Hatred: Fear with perceived threat
Love: Experience with the absence of fear
Joy: Fully-expressed love
Diversity: Synergy of similarity (commonness) and difference (uniqueness)
Wisdom (1): Realised Experience, Attributes and Learning (REAL)

Wisdom (2): Realised Expression After Love (REAL)



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Dear Journalist...

Posted by Philip Patston on 7 September 2009, 10:28 am in , , , , ,

Thanks for your email and for taking the time to engage in this discussion about language and disability. I take the view that language and words are symbols of thought - as and of themselves, they mean nothing. But, wonderful as we are as human beings, we bring alive these strings of letters by assigning sound and - more importantly - meaning. I am proposing new language because I think the meaning we attach to words like "disabled" and "disability" is, at worst, inaccurately negative and comparative and, at best, out-of-date.

The new terms I am proposing may, as you say, sound woolly, I agree. In some contexts they sound downright strange and, as I say in my post, I'm not saying they are the right terms. But I think changing these words is no different to changing words like "negro" to "African American" or "homosexual" to "gay" (I mean, how woolly is "gay"?!) These changes reflected a change in consciousness driven by the civil and gay rights movements and indeed, changes in the self-perception of the people described/symbolised by the words. I think this change is happening for disabled people.

Change feels uncomfortable until it becomes usual. I'm sure there were many in the media who resisted the change of pronunciation and more liberal usage of Maori words, saying they were difficult to pronounce and even that people would not understand. But media people and their audiences learned to pronounce and understand the new language and now it is hard to remember otherwise. In no way am I advocating coyness, but I am questioning the emotive melodrama the media like to associate with unique function and experience. I am happy with words like Deaf and blind, and describing people's use of hearing aids or wheelchairs. But I would contest words like "problem", suffering", "afflicted" – they are judgements. I'm happy to say I use a wheelchair – because I do – but I'm not confined, bound or otherwise limited by it. I just use it.

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