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Media | The view from down here

Category: media

Language matters: offspring

“The Home Truths report focuses on the experiences of three groups of women in the housing market: single mothers, women over 50 and elderly carers of disabled offspring”

I’m convinced the report is right and makes a valid case for “housing first” but calling any group of people, offspring? Please SMH, you know how to do better. We really don’t need even little things to dehumanize our experience any further. We are none of us part of a breading program.

How would I have done it? Put the same sentence together ..

“The Home Truths report focuses on the experiences of three groups of women in the housing market: single mothers, women over 50 and elderly carers of people (living) with disability.

If you want to make sure we know that the carers are, in fact also the parents say elderly parents of people with disability.

People come first, as people. Then the impairment. Subtle yes, but dignified. Therefore vital when you have the responsibility of being a national voice

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Morning brew

I like good coffee. I kind of like to claim I’m a coffee snob. I’m not really hooked but I think its something of a claim to be hooked, so it was a bad morning on Wednesday and I started to imagine a traumatic headache that was vastly over-stated in reality.

Those of you that follow me on Facebook, (yes I know I said I was leaving Liz), know that last Wednesday my coffee machine died (a short I think probably user error). After doing a bit of telephone trouble shooting with me via phone, Jasmin from Nespresso determined that yes indeed it was time to send it in for a repair, covered thankfully by warranty with an interim “stand in” machine to be delivered to allow safe return of my rather sad machine for repair. It will take at least another 3 days for the interim machine to arrive. Wish me luck.

As I trundled up the road to start my day without sight of my first brew. I stuck podcasts on to play and the next in the queue was ironic indeed.

It was All in the Mind an Australian radio program on Psychology. This episode was one of their series on cultural chemistry; an entertaining look at coffee and how much is too much (audio here, with good jazz music early on).

I got my fix in the end, ironically. I’m doing ok without it handy too. Says she with an empty coffee cup from McCafe at her elbow!

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growing my leaves

It’s been a difficult week again. A few things that will I know only seem significant to me. At the beginning of the week I had lots of writing ideas. Now I don’t. But I cane say the Willows leaves are growing again.

By Friday I had “crashed”out and was shattered so after coffee with a friend who had a dream about me, I went home determined to finish some work so long overdue. Only to discover that my other server was down and will be back today. I wasn’t feeling well enough to go out. So I googled. Within minutes I found myself watching of all things youtube videos of the American TV shows, the Bachelor and the Bachelorette. Back to back. Sad? Yes possibly. Distraction? Yes. More importantly although I am well aware it is contrived, it made me smile and hope. I almost believe now that manners are not dead, at least not yet.

I started with the London Calling season. Despite the english angle, I couldn’t attach to the women or the catyness. After having difficulty finding other seasons to watch on YouTube I found season 14 Jake Pavelka “on the Wings of Love”, and it predecessor with Gillian. A nice guy with faith and manners and some good women. Google brings up some gossip and the sad news that they are over. But as I said in the note I left on his website; it was nice to see someone who believes in manners of my generation without prudishness.

It wasn’t that I needed to renew my faith in only men per se, but humanity. It did.

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A vision or not

I did some googling and searching on YouTube for videos from Australia by people with disabilities. I came up sadly very short. Nothing really from a sense of community of disability here in Australia. I don’t think we have made the leap between sector and community; between political and social.  Both are necessary, but I fear that we are too busy fighting with both the politicians and sadly ourselves to share just thoughts.

So here are my “just thoughts”  on a recent trip to Melbourne, on seeing 18 people with apparent impairments, on inclusive process (ok I got a bit political) and on “drop jaw”.

The lighting is bad and my voice was not ideal, but this is my offering. It goes for 18 minutes (which means it is split on YouTube but in one piece here.

My thoughts on inclusion and access in Melbourne Australia from Joanna Nicol on Vimeo.

There may be others, if I can find the charger for the camera!  

Blogged with the Flock Browser

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Singer a different tune

In response to this segment from Q and A from Monday night(full video here)

To Peter Garrett MP
Re- Q and A
As a woaen with what Singer would probably at some point term a severe disability I want to say thank you for respecting my right to life without turning it into a “sacred” comment.

I scored a 3 out of 10 on the first Apgar test after birth (less than a minute). It increased but I still have at best a “moderate” disability by many standards. Yet, now in my 30′s I have been a career woman with strong community, social and intellectual roles my entire life. While my parents may or may not have found raising me rewarding, I believe I’ve earned my spot here.

Without meaning to sound too conservative, I worry about the slippery slope of these topics. I know that Peter Singer was talking about severely disabled kids but I worry about decisions based on subjective words. At what point does a 3/10 Apgar score become “too low?”

Anyway, thanks,

J

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learning new tricks

This might be an old series of videos, but they look like they are a good idea.

I never really had rehabilitation as such, because my primary disability has been a part of my life forever. I certainly wasn’t neglected by the medical and paramedical professions but my starting base was certainly different and I think expectations were as well, not least of which my own. I had physio and occupational therapy and several surgeries to try and get the most of my lopsided form, but never intensive rehab. I don’t think I was ready to be a good student either.

My strength and energy levels are different now. I certainly seem to myself to be weaker with more general soreness from over 30 years of utter dependence of very few muscle groups and no real direction on how or which muscles to add to my arsenal. Others with more stubbornness, foresight and/or courage developed transfer techniques, wheelchair management processes and various other routines and physical strength to get on with “it” independently. I have to, but mine are a lot less physical, a lot more mental, and a lot more dependent on a set way of being.

So in a sparkle of interest to see what equipment or ideas were out there led me to google “getting dressed in a wheelchair” as a starting point. A series of videos demonstrating his way of doing various transfers appeared best relevant perhaps to c6 Quad males but encouraging if nothing else. This video describes him and why he’s done them.

No I’m not going to do any such demos not yet anyway. But I like the logic. Information is power, but only when you know you want it and know the questions to ask (or even that you can ask!). The rest of his videos are here.

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values added

Interesting take on “assisted suicide” as a care prevention option.

This couple were apparently in good health but precisely because they were in good health now was the time of their choosing;

“Mr and Mrs Milner’s daughter Chrissy said her parents had been in good health but did not want to get to a stage where they would be too ill to care for themselves. She said they felt they had to pre-empt any possible serious deterioration in their health.”

And this from the letter signed by both Mr and Mrs Milner;

“I have made many visits to friends and relatives in care homes. They cannot wash, dress, feed or toilet themselves. They cannot get out of the chair or walk. This can go on for a long time – years.

Long before we reach this stage of degeneration the quality of life for us would be unacceptable, cruel and inhumane.”

This is probably the main area of public commentary and thought where I come over as, dare I suggest, my most conservative. My biggest issue is the Milners objection to living a less than perfect life.The danger seems to be in leaving people with the impression that unless everything is just the way it always was, or the way you want it  life is “not good enough” to live. That may or may not be appropriate for the Milners’ or the late Christopher Reeves who made similar comments following his injury. But as  someone who occasionally needs help with all the things that letter listed, I’d like to think I contribute and have added value even at those times my health was at a low point and I needed to adapt.

Advocates of this position have told me that it isn’t personal: that they make no judgement about those of us who choose to live and hopefully contribute in spite of our challenges. They often heroise us; collectively for living.

If I had a dollar for every time someone told me they couldn’t live with my disability…. And there have been times when I thought they were right.

Each person will make their own decisions about end of life. I have no issue with the decision they have taken. I take issue with the publicity they sought by seeking to have the letter published.

He said his first letter was published 60 years ago and asked that this, his last letter, would also be published.

My quams are about the social responsibility of turning your choice into a headline and the impact that has on the rest of us

At the point that you write to the newspaper, or post to a blog claiming that you want to get out while you’re ahead  you add to the debate and the value of choice that you advocate is compromised. You are in a position to place value and the associated judgment on all life, not just your own. On the recent paraplegic who is trying to piece it together on his way to physiotherapy; on the teenager whose parents have just divorced for whom just the way it was seems a long way away. Either of these folks could be flicking through the paper and read your assertions about maintaining control and “the good life”

Inclusion of the rest of us who just get on with it also gets much harder. The fact is none of us know what we will be capable of till we are there. To publisize a decision like this either way makes it harder for the rest of us to make our own choices.

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now published

It was a strange day earlier this week when one evening PB teased me with the dreaded “surprise”.

Buried in the caboose was a copy of the October issue of Link magazine. Published five times a year Link is “Australia’s leading national cross-disability magazine.” Lo and behold an edited version of the organic fruit blog post was on a two page spread with a bright shiny red apple smiling back at me. Wow. It was a strange feeling seeing my name as a byline. A small part of a dream and an ability bourne out of my own self acceptance as an educator and as a former colleague once discribed it a good “translator”.

So the original post is no longer protected (as per agreement with the magazine editor) so enjoy. yes there are more pieces in draft form.

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The Michael Jackson thing

Despite the fact that I am of the right generation, Michael Jackson’s music never really grabbed me. I knew and liked one or two of the more popular songs, though, at the risk of sounding like an old woman as a teenager most of his music was too fast for me. Although, once reviewed, his music, generally had very nice and meaningful lyrics.

As a result, most of my exposure to him throughout my life has been through the media and regarding his huge fan base, his somewhat strange behaviour when walking around, reports about Neverland, and of course the various controversies involving children including his own.

I wouldn’t say that I was tied to the television when his passing was announced but I have been interested, not so much in the controversy surrounding his death, but more in observing the reaction to his passing and the various critiques of his life and work. The public display of affection has been fascinating, both in  very tangible ways and online;  the intermediate, and the slow burning.

This video   sums up quite nicely quite a few of my views on this whole phenomena. With thanks  to Rebecca’s pocket.

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