It has being very much a limbo time for me. December was a hard month. January is looking brighter; but I am waiting for some dots to connect.

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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Dear All,

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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Faith is belief in things we can not see. Indeed. It is also I think a belief in things we have seen, remotely in other places or historically in my own life but can’t find currently.

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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I’ve been catching up on my podcast listening while laying low and I came across this from the folks at the the TWIT Network — a partial review of some of the apps that are used to enable usage and assist people with disabilities on the iPad.

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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So I was sitting at an inner city bus stop waiting for a bus. I was dressed well enough. In other words this time I was wearing shoes not uggboots — yes been guilty of that too. I was in slacks, jumper and trench. I’d even applied makeup. On my lap was my Oroton with much too much evidence that I’m addicted to stationary shops. I was reading my latest purchase; The Hitchhiker’s Guide to the Galaxy. Others were around. Standard day really. A woman (50 ish, nice face, unremarkable) walked past. I noticed her legs over the edge of my book. She then doubled back without going very far.

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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From Dave Hinsburger – good advice on the trap of self labeling, often more toxic than other people’s labeling:

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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No not me. Sydney. Lady Gaga came to town. She came, kids screamed. Otherwise serious “news magazine” tv hosts swooned. And GaGa (whose name is apparently Stefani Joanne) sat in a wheelchair during one of her performances.

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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Happens daily to me.. note the eye-roll.

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Ok so a few days ago I promised that I’d give you my top five things I want to be different for people with disability in 5 years time. There are of course more than 5, but here’s my five.

• I want the assumption that I (or anyone) needs a carer with them to stop. I may or may not have a carer, but it is amazing how may people especially from non-disability focused organisations (like airlines, it seems) assume that I must. If I don’t have a carer with me at the point where you see me, and you don’t know me, then lets assume for argument’s sake that I don’t have one or need one. In fact if I look like I know what I’m doing with a particular situation, lets treat me like I do. It’s quite hurtful as a grown woman who has lived with this level of difference my entire life, to have complete strangers look around me for someone, anyone that stands up so that they can breathe a sigh of relief, start talking over my head, and  tell me how lucky I am to have a friend like whoever the standing person is. I’m not taking anything away from those that have either formal or informal carer arrangements, but I don’t. I’m trying to get a best fit here in a world that i at best 90% there in some areas (but it’s often a crucial piece that is missing).
• I want to really be a person, not a product/program or a problem. With the integration of some provision of accommodation of people with disability in the mainstream activities of life, I’ve noticed an increase in bad references. Variations on”There’s a wheelchair coming to 16″, said  to me is a twice or even three times daily reference. I know its shorthand and  know its said so you can ultimately help, but its rude to ignore the person in these references. My chair didn’t ask for help. I did. There may well be processes that need to be incorporated, but that’s not going to change if you add a personal descriptor into the mix. My wheelchair is not going to drive itself. While I’m here, would it hurt you to realise that I didn’t appear on your radar as a problem as much as a person trying to get on with it in a world that wasn’t built with weakness in mind? Smile.
• Borrowing from Stella:

In five years time I want to be living in a world where disability doesn’t automatically mean disadvantage. I want to be living in a world where I don’t spend every spare cent of my salary, from a job I work hard at, on maintaining my participation in the world. I’d like to be able to entertain the possibility of being a home owner or going overseas, like my non-disabled peers.

These things are do-able but really a lot harder than they need to be.

• I want it to really truly be illegal to build a building, or run a business that does not provide access to all of us, and I want that enforced legally and socially. I want it to get more than sympathetic/guilty glances when others can use a service like transport without thinking twice
• I want to be a proud included member of any number of communities and cultures — not just based on lack.

There’s a start…. Thoughts?

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