Photo courtesy the voice Australia website.

Here’s the performance.

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“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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The fact that it was in Sydney’s Town Hall is an irony that doesn’t escape me (for those that know me offline.

I am not a fan. I had figured that I wouldn’t be. I had judged a book by it’s cover, and I’m ready to admit I was wrong. I assumed that given her fan base of tweeny boppers (“little monsters”) and those prepared to dress in obscure costume I would find the music too harsh, among other adjectives.

I didn’t see the nightclub or town hall performances. I didn’t see the wheelchair stunt as some are calling it. But I did see her tv interview here and her performance after the interview in the glass box. I have an admission. I liked it. Based on those two events I like her. The fact that she went on to roll out on stage doesn’t (having heard her speak) change my view.

She is remarkably level headed and passionate about inclusion. I understand from the Huffington Post piece that she has offended some of her fans and overseas disability groups, but less so here. Here as long as it was done consciously it has been received ok.

I was asked 5 times yesterday how I felt. That’s my answer. Like others I was more just jealous that she could get a chair that worked for her purposes so quickly especially after my recent experiences!

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Image credit: NYMag

This guy is really funny, and smart. I know. I watched one or two of the episodes of the Oprah Winfrey “reality show” he was on. He clearly has an interest in a broader range of issues than his own Cerebral Palsy. Although quite open it seems to owning up to it — like me it might be a bit hard to miss.

I know it looks like I’m just jumping late as ever on to this bandwagon. But I was interested in this piece about him. He and I had families with similar approaches to schooling and such it seems.

A native of Buffalo, Mr. Anner said his parents insisted he attend regular schools and be treated just like other children. “My family is weird in a very good way because I was always exposed to the arts,” he said. (His mother teaches acting and playwriting at the University at Buffalo; his father is a bartender and videographer, with a passion for travel.) “Everything was always about finding creative energy and finding different ways to do things.”

I know and understand that he doesn’t want to be famous because he uses his chair, nor does it appear that it will be the focus of the show and that’s great. I know the feeling. I was the girl who declared as a teen that I would never work in disability (so much for that).

Regardless of his wishes, he will I’m afraid have the CP  label added to his unspoken CV. It is part of the appeal. We can’t get past that. What is so good to see though is that he is himself broader than that. So he will take those who see him and know him broader than that too.

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We tolerate really bad weather. We tolerate that annoying person who sits next to us in an exam clicking their pen incessantly. We tolerate a cold, a sore throat, that strange outbreak of warts on our left foot. When asking people to be tolerant of disability in our society, are we asking them to put up with us, to endure our existence?

Our unwillingness to expect more than mere tolerence might in fact have something to do with our individual situations and the individualness of our situations. I know that there are many days when I for one merely tolerate my impairment quite apart from any disabling effect that leaving my house might produce. This might as others are starting to argue, be the main weakness of the Social Model of Disability, that we don’t take enough notice of the individual effects of our impairments.

But regardless of why we have tolerated mere tolerance this is a vital call, and a timely one. We all seem to be getting less tolerate of each other. So the time to make do with tolerance of people with disabilities is over. We need full acceptance and incorporation.  Is it too much to ask that we be um … er…. citizens?

We can expect to get bruised and battered, but we’ve been there done that, haven’t we? We need to do that again, as individuals and agencies. Together. United. For ourselves.

Last word to Stella:

The time has come for disabled people show zero tolerance for discrimination, for transport we can’t use, for information that’s not accessible to us. We need to show zero tolerance for the restriction and denial of our human rights.

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There have been two simultaneous tragedies recently on the world stage. Both have caught my attention, for very different reasons. The floods. The assassination attempt of Gabby Giffords.  Both sad. Both with disability implications. I’m going to start with the one closest to home and more immediate in its implications and in this case celebrations.

Heroes big and small

Amid all the tragedy of the Queensland and northern New South Wales floods there have been many stories of heroism, and many stories of loss.

Whoever coordinated the AUSLAN (Australian sign language) interpreter service accompanying the police briefings and Premier’s  speeches every time I saw them on TV is my hero. Particularly on Channel 10 and Foxtel (who didn’t crop the interpreter out of the picture, somewhat defeating the purpose I would think). It’s the first time I’ve seen inclusion work so effortlessly upfront in the mainstream Australia media. In their press release, available here, the Australian Communications Consumer Action Network congratulated the Queensland government and I will to. Of all the many things they will be congratulated for, this won’t be remembered as broadly as it should.

As to the floods more broadly

Friends of my brother’s were affected, but otherwise it didn’t touch me personally.

We are increasingly becoming a land of extremes, the kind of extremes that Dorothea MacKellar talked about in her poem; which I did elocution lessons on as a teenager. It includes the following stanza.

I love a sunburned country;
a land of sweeping plains,
of ragged Mountain ranges;
of droughts and flooding rains.
I love her far horizons,
I love her jewel-sea,
her beauty and her terror–
the wide brown land for me!

Last year and many years it has been fire that has ripped communities to the core. Floods have been devastating for local communities and growing up in the country area I saw a few of those though thankfully never first-hand. However, they have never been so wide and broad in their scope.

I’m not sure whether it is a change in the weather pattern, the 24-hour seven day a week news and online cycles or a combination of factors but these disasters seem to be coming thicker and faster. It’s probably a combination of these factors.

Giving campaigns

What also seems to be coming thicker and faster are the appeals for help. . There have been fundraising efforts by every television network in Australia, many shopping chains, including coffee shops and high-end boutiques.

Even Naffnang are holding an online auction of some sort.

Please don’t get me wrong. I don’t think that banding together as a country to support those who need it in at the moment of crisis is a bad thing. But even this seems to now be turning into a bit of a commercial competition of one-upmanship. Who can pull at the heartstrings tightest. Lovely in sentiment. But perhaps not in the delivery.

Ultimately if the money goes where it is supposed to, to the individuals who need it the most, and not just those with the best connections, or the squeaky-ist wheel, it will be good. Or not even good, but great.

Personally I’d rather just write a bigger cheque to the one organisation, or to people I know personally who need it and stay away from feeling like I have to donate every time an organisation decides to raise money and look good.

My local television station doesn’t need my donation to choose to make a donation in its own right. they have enough money to do it without announcing it or seeking my help. My local coffee shop can too without selling me a muffin or cupcake. They don’t need to tell me how good they are. I’m reminded of a Bible verse which has nothing to do with Noah. From Matthew 6;

Be careful not to practice your righteousness in front of others to be seen by them. If you do, you will have no reward from your Father in heaven.

So when you give to the needy, do not announce it with trumpets, as the hypocrites do in the synagogues and on the streets, to be honored by others. Truly I tell you, they have received their reward in full. But when you give to the needy, do not let your left hand know what your right hand is doing, so that your giving may be in secret. Then your Father, who sees what is done in secret, will reward you.

Believe in the religiousness of it or not. My point is that surely now isn’t the time to be posturing or letting our media do it for us. Now is the time to back each other, report on the news, give us the updates if that is your job, but stop competing to be fund-raisers.

I get that some people need reminding to give. Some people need the opportunity to be right in front of them. Some of us don’t though. It feels too much. And it is starting to feel insincere. The fact is that those who will give will find a way to do it.

Perhaps a bigger change …?

It is time to start assuming that people know the right thing to do and are capable of doing it, whatever that is. It is time to raise the level of public debate. It is time to stop catering to the lowest common denominator. It is time to do the right thing, just because it is the right thing to do.

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The other day, I was listening to him talking to Bill Moss, who has a rare dystrophy, who runs his own financial consulting business in order to fund research into his condition.

I found the interview fascinating, in that his approach as I think being similar to mine, just get on with it. We have a few interesting connections but I don’t know him at all.

There was quite a bit in the interview about government funding for research, which you would expect and his history with his disability. However, I noticed that quite beautifully Philip did not talk about his current level of impairment or dwell on the question of prognosis, which piqued my curiosity but no more.

They talked about the foundation; It’s work, it’s funding. Interestingly they also talked about stem cell research and the fact that ultimately it won’t make a lot of difference to him. I got a different perspective on the purpose of research and a longer term approach.

Phillip tended to want to turn the conversation into built environment and government discrimination, which was great but you can hear the struggle between interviewer and interviewee to direct the conversation between positive future looking and reminiscing with the lessons that are still relevant

It was interesting that they talked too about the glass ceiling around disability issues and the extra effort required to crack it with a disability.

There was a lot more;

• Lime taxis — including a history lesson in how long it used to take to wait for a cab
• Built form experience - including the fact that personal experience including embarrassment breeds understanding and passion
• The experience of retiring young and the change in how you are received.
• Aboriginal employment using tourism and cottage industry and taxation to reduce the costs of unemployment benefits
• Hope, politics and disability.
• Cost of disability

and more

If I fell over in China, I’d have 20 people rush to help within a couple of seconds. If I fell over in Pitt St Mall (in Sydney), it’d take a 3-4 minutes for someone to come and help.

I think Bill is right while the compassion and empathy might be better– I think the attitude and built form is lagging behind.

He’s realistic, refreshing and worth a listen.

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A New South Wales Senator Doug Cameron from Australia’s house of review made an an interesting couple of comments in an interview in favour of what “we” are calling “equal marriage rights legislation”. I was listening tonight via podcast.

He talked of discrimination against people on the basis of sexual “preference” as legalised apartheid. I’m just saying that I think the lack of choice offered to other groups, other minorities in the country might also be seen as the same thing, but if you’ll pardon the pun it might be a little less sexy perhaps to argue on the basis of limitation or age. Remind people of weakness and the inevitable ageing process?

He argued that we shouldn’t be discriminating against gay people because they are ordinary people. “People are people”. Indeed again not the only minority with that argument.

“We don’t just live in a economy, we live in a society and society means you have to build a good society (my emphasis) and ending discrimination is one way to build a good society”

Meaning it takes moral leadership to equalise the playing field and perhaps the ability and courage to take a stand, and perhaps heaven forbid say ummm no to some things?

And key.

“I don’t think human rights are ever a fringe issues.

Good then. Fight for all human rights please

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This election has been scareingly un-inspiring this time around. There doesn’t seem to be a good place for a thinker more interested in the long debate than the sound bite to be.

Then we get this from a former leader;

“You’d need to be pretty handicapped not to appreciate this Government is dissolving before your eyes daily,” he said.

Yes indeed unfortunate. However Bill Shorten who as Parliamentary Secretary responded in two ways one worked one didn’t. Yes Mr Secretary you are right it wasn’t the most appropriate choice of words. But neither sir was your response.

He doesn’t have to attack and use the intellectual disability of thousands of people and say that that is the distinguishing factor of whether or not you know what’s going on in this country or not.

We need to claim language back. The definition of handicap includes

a circumstance that makes progress or success difficult .

But more on that at a later point.

Even in the more unfortunate interpretation of the word handicapped can refer to other impairment types than those with intellectual disability even when referencing the general public’s “appreciation” of the current situation. My perception of the current state of affairs is impacted because I live with an impairment. It’s not intellectual one, but it does impact the choices I make and will make in 12 days time. Just as you picked up on the intellectual disability angle of the quote, you missed the reference to sight loss. But maybe the votes aren’t there with the vision impaired community as with the carers lobby eh?

Don’t play favourites please Mr Shorten. Some of us are noticing.

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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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