Tag: ndis

steps to a community

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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five 2.0

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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Five years. People talk about five years like it’s a long time. It is, and it isn’t.

Five years ago today I started work back in Australia after what can loosely be described as “time away”. I re-entered the disability sector. I re-entered the Church (which in my case eventually included becoming a Catholic). Five years ago, I was single, and hurting.

I can remember waking up at stupid o’clock on the morning of 8 May. I have known for some three weeks then I would be starting in this job. I had in fact already been to a quarterly meeting the Thursday prior with one of my colleagues who I had known previously leaning back watching a slideshow demonstrating some of the problems that I would be dealing with. I suspect part of him was relieved that among his busy roles, someone else would be dealing with access–whatever that term means. However, it was still my first day in that role.

Anyway, all suited up, I arrived at work, on the early bus and was sitting outside a nearby church a little after eight o’clock. I had been asked not to start before 9:30 AM on that occasion. I remember feeling nervous.  I remember the sunshine. I remember trying to empty my head so that I could focus on the day. I also remember feeling powerful and having a real sense of the possible. As it turned out, a lot was possible. But I was still very naive in some ways as to what I was taking on. Who knows what a bit of extra knowledge would have done.

I’ve been thinking a lot about time lately. The wasting of it. The good use of it. The goals we set and forget. The goals we remember. The visions we have for which we have some responsibility, and those that are more esoteric.

Matt’s post on creating time for your life, was good for me. I started thinking about the passage of time. Then, at the conference, five articulate advocates were asked to share five ways that they hoped the disability sector would be different in five years. Ramp Up’s editor very articulately made the case that there was a lot more than five things that she wanted. It was the only time at the conference that I was close to tears (well no, but the only presentation that brought me close to tears).

In another part of my life–blogging  Danimezza shares powerfully and intimately the journey she has taken through time, including importantly the stuff we choose not to speak about on our blogs. You go girl! I’m proud to be a lurker on your blog. Blogging can be hard if you can’t be (or don’t want to be) classified as a particular “type” of blogger. I’m often just an “other”–a position I’m fairly used to.

I didn’t think today would be a review day. But I’m glad it is. In case you are interested tomorrow I will do my five things. But I want today to think about it.


What’s on your agenda for the next five years?



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Because every Australian does count

With apologies to my international readers this is about a very important political movement happening here in Australia to help people with disabilities cover the living costs of having a disability in an enabling way I would really appreciate it if you are happy to refer this post to any Australian that you know. Thanks. Joanna


Part of the reason that I was in Melbourne this week was to attend the National Disability and Carers Congress.


It was an interesting exercise in people watching, as well is a great deal more. Most of the people attending were service providers who, it has to be said were unsure what to do with me. I was one of about 25 people who use wheelchairs, and have made a business or, like me, represent a service that seeks to improve the lives of people with disabilities and their carers. This was among 1000.

The Disability and Carers Alliance is not something that I was aware of. I’m not sure how long it’s been around. But it struck me to some degree that the alliance, however old or long is a tenuous one established to get everybody on the same page and fighting towards the National Disability Insurance Scheme. This is something that although it smells a little bit like the latest silver bullet, in a similar way to the development of the now endorsed Disability (Access to Premises–Buildings) Standards, I think this might well have a very good and profound impact on the living standards of people with disabilities.

That is of course if like all things we can get the balance right. The balance between individual freedom and flexibility to choose and the unavoidable budgetary constraints, which means that it is unrealistic, unworkable and unfair to expect a blank cheque to be given out to every individual who has a disability.

The biggest thing that impressed me was the business case and the fact that the  Productivity Commission could see the business case. Without compassion to human rights, social conscience, “well we’re really should because it’s the right thing to do” type arguments,  these people who in one case had nothing to do with disability, could see the usefulness of including people with disabilities and increasing both their participation and comfort for a mere 12 ½ billion dollars.

That isn’t a lot of money really when you consider that the current cost most of 6 ½ billion doesn’t include the people with disabilities in the country get no government assistance with the costs of their mobility, communication and self-care needs and are being simultaneously vastly underutilised.

I was pleased that after the rallying cry, the first real order of business was, to examine the cold hard facts and actively for the time being avoid  using the soft fluffy arguments, which aren’t always the most useful, although they are often the first to be drawn on.

I will no doubt have more to say about the Congress and the NDIS in coming days, and onward in the lead up to government response which is due by the end of the year after the Productivity Commission gives the government its report in July. the government then have until November to respond.

In the meantime, if you believe that people with disabilities have the right and responsibility to make a contribution, and then every Australian counts, could you please go to this website and with your three quick clicks say so?

For another argument ABC Ramp Up has a guest post from one of the conveners of the Congress

This is the first time since the  International Year Of Disabled People in 1981,  that I have seen such an opportunity to get the community of people with disabilities in whatever form and our friends families and supporters politically and socially mobilised to make a difference. Whatever happens at the end of the year, that much I am proud of.

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Cross-post: Gittins and the National Disability Insurance Scheme

The Productivity Commission recently released its draft report on Disability Care and Support. I haven’t read it yet. It’s on the list, along with half a dozen other books, several readings for university and a partridge in a pear tree. It’s bad anyway, it is on the list.

The Australian journalist for the Sydney Morning Herald Ross Gittins has quite rightly beaten me to it. And he likes it. This is encouraging especially given that he speaks from an economic viewpoint. The business case for more individualised funding and says some sort of no fault payment to enable participation in the case that I have been arguing needed to be put together. The Productivity Commission has done just that.

The statistics that Gittins quotes are accurate if not conservative;

“It’s estimated that about 680,000 people under 65 suffer a severe or profound limitation in their ability to engage in core human activities. Just under half of these have at least a daily need for help with mobility, self-care or communicating with others. But only about 170,000 are using disability services.”
The definitions of “severe” and “profound” might well need some clarification. As I said, these numbers may well be conservative. However, it is a place to start if nothing else.

Much like my earlier piece looking at quotas in Egypt, I appreciate the fact that the discussion seems to be around enabling meaningful participation. News coverage on television and radio on the Insurence scheme here have profiled wheelchair users in the workforce and are using whatever little funding of money they have to pay for the care they need to work and pay their taxes (unclear sentence). The ordinary people argument.

Gittins and others are right. It’s not a topic that we want to talk about or even think about. It’s scary to think about bad things happening to good people, especially those we love. Politically it is difficult to score points opposing it as well, so you don’t tend to get traction in the media unless you’re the Business Council perhaps. Especially given that the topic of disability is just a little too uncomfortable to be a warm fluffy human interest story.

But Australia needs to start having discussions about bigger issues that may not get solved in a week, a year or even an election cycle. Perhaps some will take a generation but this can be the start. Embracing humanity and the “fair go” principle for which we are (or were) known worldwide.

I do think there are some issues with the content of the report. For example I get nervous about another assessment and which box I might or might not fit into. However seeing disability as a productivity issue for the entire country and not an individualised problem deserving of sympathy only is a big step in the right direction. The locus of responsibility on all of us to contribute (and let each other do so) is reassuring and the tone of the discussions by those over whom this is not usually a core issue is comforting.

I am starting to feel like my country actually wants my contribution and is prepared to enable me to participate. Nice.

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