Category Archives: Disability

going gaga

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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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five 2.0

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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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Because every Australian does count

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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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sparkle sparkle.

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After talking myself almost horse today what with one thing and another I’m reminded of this video that I saw last night. I’m not a big fan of inspirational “disabled” motivational speakers (having said that–I watched two last night both brilliant), sent to remind the world at large how valuable and precious their own existence is, but this guy is the exception that makes the rule. It’s 19 min and it’s worth every second in my opinion.

Get a load of this guy’s eyes, and his compassion for a world that doesn’t get it.

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ANZAC Day

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My grandfather on Mum’s side was a surviver of service in World War 1, I have had various relatives on Dad’s side serve in World War 2. I look at activites in the middle East and wonder if we will face a third war of that scale. I thank the newer recruits who are fighting not just for our own safety but for the well being of others.

Lest we Forget. Lest we get lazy. Here the link to a more articulate post of mine on Anzac Day

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Before you improve my footpath; please think

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I’ve been giving some thought to pointers that I would like local councils and construction workers to consider when developing buildings or public spaces. In this case, I also include foot paths, cycleways and the like. There has been a lot of “public amenity” development going on lately meal where I’ve been spending my days. While this is probably a good thing in the long run, there are a few things I wish people took more notice of;
  • not everybody has an unlimited amount of time or energy to renegotiate around your building project.
  • Not everyone is able to see 100 m ahead of them
  • witches hats do not make a particularly good barrier, especially if it is not clear why the witches hats are being used,
  • one sign in a large park, with multiple entrances that does not have a schedule of works, an acknowledgement of inconvenience caused, and suggestions of alternative and accessible routes does not a good or adequate communications strategy make.
  • It is painful to go over rough and uneven surfaces. However, when that is expected or planned for. It is easier to manage. It is not unacceptable to simply expect all citizens to merely adapt for an unknown period of time
  • It Is your responsibility to ensure that any alternative routes are accessible, dignified and timely and can be accessed with the same level of independence as the route that you are “developing”. If this is not possible then, part of your responsibility is to construct such a route prior to deconstructing a pathway that works.
  • Please do not simply construct a barrier to accommodate your break area, a convenient parking spot for an empty vehicle or similar.
  • If your works are to be staged, your signage should include indicators of;
    • how long each stage will take
    • indications of what each stage will look like,
    • alternative routes and information about distance and approximate travel time,
    • contact information for the project manager who should be able to be on-site within half an hour if required by a member of the public.
  • I and many others still need on minimum clearance of 1 m. While I understand others you might be trying to discourage from using the pathway could also get through–this is ultimately not my problem. Adequate communicative signage should be sufficient to encourage alternative route planning for those that can.
  • While this is not directly your responsibility, please be aware that while your “development” or “improvement” might in and of itself be minor; it could well have been my 5th of sixth such adaptation for the day in short order  and the mental and physical strain is cumulative. It’s mental gymnastics that can be hard to negioate
  • If you cannot to do all the above, then frankly my dear, you can’t afford to do the job.

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On his OWN: Zach Anner

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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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As the dust settles

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Yesterday NSW had an election. It was a landslide. that many others will no doubt talk of for many days to come.

Picking up on a post from Mary over at HAT, yes I think she might be right. From what I saw in the literature, there was a higher number of “baseline” accessible venues.

But I never left the house to vote.

I iVoted. At home. On my own laptop. More privately than I did more than once at a polling place.

Designed for people with vision impairment who use screen readers and various other disabilities – they broadened it out to allow travelling folks to feel included too.

The information on the iVote website read:

You can vote before Polling Day using iVote if:

  • your vision is so impaired, or you are otherwise so physically incapacitated or so illiterate, that you are unable to vote without assistance,
  • you are unable to vote without assistance or have difficulty voting at a polling place because you have a disability (within the meaning of the Anti-Discrimination Act 1977),
  • your real place of living is not within 20 kilometres, by the nearest practicable route, of a polling place; or
  • you will not be in New South Wales throughout the hours of polling on polling day

.

The process was painless enough for the fact it was hard to see the bigger Legislative Council in its entirety, and I had to do this sequentially as opposed to top and tailing it as I normally do.

Yes I would do it again. But my question is; is this going to simply be a work around so the various electoral commissions don’t need to improve the distances to and percentages of accessible venues. I hope not. But sadly I fear so

 

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Cross-post: Gittins and the National Disability Insurance Scheme

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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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