I was out with a good girlfriend musician who after a child-bearing hiatus is thinking of going back to performance. We talked a little of fame after going to Adriano Zumbo’s bakery and talking to the man himself who has been on tv here in recent years. My girlfriend went all starstruck and girly which was lovely to see. One of the topics we talked of was being on public display, something I know a bit about.

One of the things I have noticed again of late is the fact that I seem to be or feel I need to be always ready to be on public display. It’s not fame or even notoriety for anything more notable than I get around in a wheelchair.

The basis for the attention ranges from nosiness such as these comments to me in the last week from grownup meant I met for the first time on the train system.

• “How does the chair work?”
• When do you charge it?
• ” I think you’re rear tyre is falling off.” (it wasn’t and no he wasn’t trying to be helpful)
• “you need a pouch on the side of the chair like this (gestures with hands)”
• “Can you sleep in a normal umm bed?”

It goes from the benign to the ridiculous. From nosy (above) to rude and curious or companionable (“I have a friend/sister/third cousin 6 times removed who broke her legs, so I know what its like”, “Do you know a guy named Bill (since you both are like that)?)

I feel I have a responsibility to be the most generous positive version of myself I can be. For all sorts of reasons. One of these reasons is the sense that I want to give the public especially children a positive experience of disability, if I am the first part of their education in that area. Sometimes that onus gets a wee bit too heavy, but it’s a hard one to shake.

Children of a particular height/age can be very funny; trying to work out how I’m moving myself, or why my “pram” is so different or why I’m such a big baby. I usually try to smile and say hello if I’m close enough. I do try hard not to laugh too hard when the child is staring so hard they walk into a wall (on more than occasion). I’m a little impressed when a restless or upset child can be suddenly quieted merely by being dumbfounded at the sight of me rolling about doing my business.

The attention is by no means constant; at least the comments and the wish to stroke my hair or pat me aren’t. The readiness must be. Especially when I don’t have a normal looking person with me it seems.

By the way, as someone who doesn’t like macaroons the one’s at Adriano’s were sublime. Go there! There’s even a ramp!

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Photo courtesy the voice Australia website.

Here’s the performance.

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I’m waiting for a space with a new specialist. Looks like I’ll be waiting till May, which kind of means that I can’t really start the rebuilding project that I committed to before Christmas.

A home care service has started; personal care and house work. It’s interesting having my time managed by somebody else to the extent that it has happened. I think they have the impression that because I don’t work I don’t really have a life. I hope these are just teething problems.

After watching previous seasons of The Biggest Loser over the last couple of weeks I’ve been thinking more about my body and fitness. I wasn’t really given a lot of information about or options as a child and teenager about what to expect from my body or even a clear sense of fitness options beyond standing frames. I wasn’t involved in sport (even wheelchair sports). This is no one’s fault, but I do feel like I’m missing out on getting the most out of my body in terms of the strength that it has and weight loss options. Yes I do have a belly! Fitness is also a good distraction and stress management tool.

So I did a bit of digging and found this. I am ashamed to admit that I don’t even remember being told what sort of cerebral palsy I have, so I guess I need to start there. I could make a guess but given I’m going back to see the GP on Friday I’ll ask.

For example, I’ve realised as I written this using voice recognition software again, how much of a tactile person I really am. I’m impressed with how quickly I can get things “down on paper”, I do miss typing. So I think exercise will be good for my head as much as anything else. It might also help me reconnect with my form and stop feeling like a head on a stick.

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I’m sending this out on a personal note.

In simple terms this email is a thank you. It is international Day of People with Disability. I refuse to deal with Christmas till after today every year!

Regardless of how stage managed events around it need to become to raise the profile, IDPwD is intensely personal and profound for me.This year it is quite emotional for me. For me it is an opportunity to take a big breathe and acknowledge the journey, the wins, the losses and the inevitable work arounds. This starts with looking at my own life and using that reflection to look outwards. It involves giving thanks to all the powers that might be and to those in my circle who give me strength and courage and other resources to make “it” happen. You are each getting this because you have personally helped me “run that gauntlet”

Interestingly, looking out for a minute I see a big disconnect between parts of the messages that are being sent out this year. Domestically we are being told to celebrate the successes and the achievements and while fighting for the NDIS, keep it light and fluffy and a-political, This is even though there are enough people with disability to fill Victoria and we are under-utilised and more likely to be in all sorts of other not-nice minorities as a result .

On the other hand, the United Nations who proclaimed the annual observance in 1992 still tell us that:

“Persons with disabilities make up an estimated 15 per cent of the world’s population. Almost one-fifth of the estimated global total of persons living with disabilities, or between 110-190 million, encounter significant difficulties. Furthermore, a quarter of the global population is directly affected by disability, as care-givers or family members.
Persons with disabilities encounter many disadvantages in their societies and are often subjected to stigma and discrimination. They remain largely marginalized, disproportionately poorer, frequently unemployed and have higher rates of mortality. Furthermore, they are largely excluded from civil and political processes and are overwhelmingly voiceless in matters that affect them and their society”

I think this is a call to action if ever I heard one!

I think the truth lies somewhere in the middle and that for those of us who are “active participants” have the balancing act ongoing. It is because of people like you that I find the strength “to run the race before me”, even if we never talk about disability! Thank you from the bottom of my heart. . It takes courage to be sit on the margins. The marginalisation may have have changed but it is still present and I still feel it so thanks for the gifts of courage I am given in the big and small ways..

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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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This includes closer inspection of overseas models of disability. I wonder if people living with a disability here in Australia and perhaps elsewhere have had a mixed blessing in our “early adoption” of the social model of disability stuff. I wonder if, by watching our friends and colleagues in other countries and “getting” their learnings relatively easily, we have in fact had something of a double edged sword handed to us

I am only just starting to get my thinking lined up on this again, but for anyone’s interest here’s what I have so far.

It feels and looks to me that we have missed out on some of the community building/political advocacy/mainstreamesque protest movement stuff. Please please don’t misunderstand me here. I’m not saying that we in Australia don’t have advocacy movements. We do. They are very committed and many are good at fighting for the rights of their group. What I fear is that the conversations didn’t start far enough back in our own journeys. We jumped (or wobbled, poked or whatever) our way straight past our own stories and finding friendship and companionship with each other at a very deep and personal level to “fighting for our rights” which is great, but perhaps a little premature. The image that just landed for me of a builder putting up walls before pouring the foundation for the footings to sit in. We forgot the personal in the political.

Before we go fighting for the rest of society to see disability as being a societal construct, maybe we need to really be good with talking about what it is in our daily lives and what it really is with us, and within us; firstly with each other and find some form of respite in the common-ness in our humanity at the very least if not also the experiences of living with these types of physical and social exclusions, and their management; regardless of how they physically manifest in our lives.

Disability regardless of the labels or the physicality is a solo sport. It doesn’t really even matter what labels we have and how similar or not my label or it’s “outputs” appear to be to yours or how much I can learn from you. That comradeship can, does and has helped. But like writers end up ultimately being alone with the blank page in front of them, our own “systems” are very much our own, based on circumstances that are entirely our own.

With all that said bottom of the barrel life experiences are the ones I’ve seen other minorities start with. However exposed we might end up feeling. We must talk to ourselves first of the struggles. We must self identify if only to ourselves.Not just to have our rights acknowledged and get the right carer or transport. But first the struggle that we all face to rolll over in the morning and wonder how long before we trip over our own impairment today, to deal with the physical unknown of spasm or pain or medication or whatever. The pain of the mental gymnastics. Of the daily meeting with the strangers; inside and outside our skin.

As painful as that will be we must start there with ourselves and then we will have choice of reaction. Then we can find the courage to build a community around each of us and there we will find true friends to have common ground with; level that ground and pour the foundations and find a voice in our commoness to build the walls and start the next part of the fight.

But first things I’m afraid must come first.

Perhaps for me the most valuable thing that will come out of the development of the National Disability Insurence Scheme won’t in the final analysis be the streamlining, or the dollars and sense or even the recognition. All these are indeed key and great and important, The thing that I think will in the long term be so much valuable is that fact that we have proven ourselves capable of being a solid cross impairement community who were prepared to talk, personally and then collectively. It brought us together and then we added the communal allies. It was only a part of the picture, but it was a part.

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They covered (but didn’t really demonstrate) the in built features within the iPad and the operating system in general. Then they had a discussion about the use of the terms “special needs” and accessible. Unfortunately, although agreeing that the term accessible was preferable and more inclusive the younger Sarah Lane persisted with using the “special needs” terminology. They also make the point that these apps for people with a disability tend to cost a lot and a lot more than your average application. This will hardly been news to anyone that has a disability, but I’m grateful that they noticed and commented.

The focus then seemed to be on Autism spectrum education apps– which is great and applaudable but these I would see as education apps even though they are for people with disabilities. I understand they got a lot of input but share the love across impairment types

My best pick for an accessibility app on the iDevices — dragon dictate for iDevice. Not quite as precise as the desktop version (which is trained specifically for an individual user, but still very accurate.

The first 20 mins of the podcast by Leo and Sarah is still great though and worth the listen, even if the terminology might grate. I appreciate the fact they did it.

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Before I knew it she had thrust a rolled up $10 in my left hand. I looked up and I think the first word out of my mouth was “What?” Not all that polite I get that. But I was embarrassed and nervous about how I must look to elicit such generosity.

I looked up at the kind stranger — putting on my most “I’ve got it together” face and smiled. I was ready for pity. I was ready to go in to education mode and reassure her that I am a woman of means despite the cracks in the upholstery of my rented chair. But I saw none of that. If anything I just saw respect, or genuine good will.

Ok. But $10?

” I’m really fine, promise. Thank you, I don’t need this”.
“I know that” she was not alarmed that I had made the protest, nor was she swayed by my lack of need. She didn’t seem to be donating as much as gifting.

“go buy yourself a chocolate”. This was a gift of indulgence. Of acknowledgement not pity or need.

At that point I smiled. Was my weakness for thinking and coping with an intensely difficult month by sitting with a dark hot chocolate all over my face! The wiring in the chair would not have given me the option in that late afternoon. But still I prepared to try again to refuse.

But she was gone. The blue note looked up at me now in the top of the bag just inside enough to keep it safe. I wasn’t ready to put it in securely with my other notes. It wasn’t mine.

Later when the Disability Discrimination Legal Centre called for membership dues of $10 my blue note was the first on the table. Not chocolate maybe but a good way to go.

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Coming out to oneself as a disabled person is a huge step towards self acceptance and a giant step in confronting societies attitudes and prejudices. Adopting a ‘yeah, I’m a crip, deal with it or get the fuck out of my way’ attitude is hugely beneficial for a successful life as real live living human example of diversity. I know this I am plus sized diversity … got multiple fronts to face prejudice … and I warn you it gets tiring.

But no where near as tiring as keeping up pretense. Living a lie is no life to live. This, right now, this time, this body, this way of movement, it’s what you got. Well, get it. Take it.

Stevie Wonder in an interview was having trouble getting his point across to an interviewer who just wanted to talk about his music. With every question the interviewer brought up the issue that he was blind. He wasn’t in blind denial, he just wanted to talk about and maybe even sell some discs. Finally she asked him what advice he’d give to those who were blind. By now he was frustrated and he blurted out: ‘My advice? Be Blind, Just Be Blind, That’s What You Are, So … Be Blind.’

Tht’s brilliant advice.

And that’s my advice to you.

‘Be disabled. Just Be Disabled. That What You are So … Be Disabled.’

I would add that I don’t think that “Just Be Disabled” means that that’s all you get to be but it is what is, so take it and add to it. I am disabled. I am woman (yes hear me roar). I am a writer. I am a thinker. I’m a social change agent. I’m a daughter. I’m a friend. All of these inform the others.

He is also right in calling the process a coming out to oneself. It is a slow evolutionary process of knowing and can be with other forms of coming out quite painful and joyous all at once. Our experiences of disability may well change over time, as our own situations change as well as the built and social environment. But it is a necessary process, and in the end, worth it

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