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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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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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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I was going through my feed reader (as you do when sleep is hard)and came across  a Google beta service called Knol a searchable tool where you post essay bits on topics you have some knowledge in and can have folks collaborate  on it or not.

I searched for the social model of disability and finding nothing in the least bit useful, whipped up the following. I have left a lot out, and a lot of undefined terms, but its a start, and because its my writing to date at least I thought I’d embed it here too.

By the way, Liz Crow is here, though on a cursorary glance I can’t see reference to her quoted paper.

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BBC News – One in ten ‘cannot use London Tube or buses’.

The study claimed:

• Only 10 of London’s 270 Tube stations are completely step-free all the way from street level to train.
• Just one third of London’s 300 rail stations have step-free access from street to platform.
• While all London’s buses now have ramps, only half of London’s 17,476 bus stops meet the criteria for full accessibility.

Despite this I still found it easier to use transport in London when I was there 7 years ago, then I did until very recently here. Why with all the claims to history and tradition in the UK was I able to use transport and buildings like I was supposed to be there?

Two London transport moments stick in my memory as defining life moments, catching my first cab right out of St Pancras station – with taxi driver almost traumatised — not because he had to pick me up; but rather because he (the very next cab that came along) had picked me up – I cried for joy for 10 pounds worth, and couldn’t tell him why or where I was going! The second moment was when I could even then catch a bus, any bus I wanted before I had caught one as easily in my homeland. I was floored that nobody looked askance.

I accept that the London tube was then and seems now to be all but useless to a be-wheeled being and am glad to see they are doing something about it as it would’ve useful then, but I get the sense they are working from a rights based mentality, not a “she’ll be right”s based one and that will make all the difference, then, now and in the future.

Why do I get a lovely buzz in my tummy (because it’s so rare) when, even now, here in Australia, the right bus is the first bus that comes along and it’s accessible? After a couple of weeks in London all those years ago, I simple assumed it would work and it did!

The other thing that occurs to me as positive is that the Pommes seem willing through their mainstream media to have the discussion about access based on a report, not based on the case of some poor brave headline making person with impairment. Based on a report on the topic, transport, not the minority, disability.

The Governments here in contrast would if I’m not wrong be claiming that 90% was good enough and such a report would never have elicited this response:

Val Shawcross AM, chairwoman of the transport committee, called the situation “simply unacceptable”.

It isn’t perfect but it’s a start. The right start.

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The 2010 Don’t DIS My ABILITY Campaign Has Kicked Off!.

Enjoy! I’ll probably write more about this as the month moves forward.

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While the announcement itself is good, I’m personally a little bit disappointed that this is the first comment I have heard from Jan Mclucas; our newly minted Federal Parliamentary Secretary for Disabilitiesty and Carers.

a couple of things to notice;
Despite the wording of the United Nations Convention on the Rights of catalogue on People with Disability and the fact that carers are given a title case and personhood in her ministerial title, those with disabilities are not acknowledged as people. Secondly, as soon as she gives her title she then launches into howp roud she used to support all the carers. I really am glad she’s proud of that, but you need to be proud of both parts of the full portfolio and be clear on the different needs of both parts. Because although there are indeed similarities in the needs of carers and people with disabilities, there are differences too.

it really does go to show that once the group gets organised to advocate for itself in a cohesive manner politicians do listen.

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I’ve been watching survivor episodes on YouTube while I haven’t been particularly well. I find the show and other reality television fascinating. Originally, I thought that was because I am a self-confessed “connoisseur of human folly”. I’m now not so sure that is the reason. I like watching the dynamics between individuals; but what I think I prefer is watching people work within the rules of the shows. It seems to me that the tension between the contestants is only really tension because of the boundaries that they need to work around set by the rules.

For example, if the rules didn’t state that every three days the tribe that didn’t win immunity had to go to Tribal Council that it would not be the scrambling for votes the afternoon before Tribal Council. Nor would there be any real incentive to win the immunity challenges. The interest in bragging rights would only go so far me thinks.

Somebody vigilant also needs to be monitoring these rules with a big enough stick, or carrot and the authority to enforce the rules. In an episode I was watching yesterday, which was the final elimination before the final tribal council (so the stakes were high), a contestant shifted her foot so that for a milli–second the foot cleared the beam it was both to stand on. This was against the rules and therefore disqualified her from winning immunity.

I fear that our disability discrimination legislation here in Australia (including the access to premises standard, that was lauded for a very long time as our next big hope for inclusion) will end up being little more than a toothless tiger, especially in relation to our obligations under the UN Convention for the rights of Persons with disabilities which we championed for so long.

As hard as this might sound, we need to actually start saying no to businesses that want to exclude. We need to start saying no to businesses that want exemptions. Not in 35 years when we hope everyone is adjusted. But now. Because human nature dictates that we will not adjust until we have to. If we want people to stop driving in the city, we need to stop allowing parking in the city. Cajoling will only work so far. I think we think that we still have time–an endless amount of time. We don’t. On a whole range of issues we don’t. Disability is one of those issues, only one of those issues. Or, we think that the rules don’t apply to us, however boldly we express that. Perhaps we are the exception that proves the rule except when we all want to be exceptions.

Recently, the bus route that I travel on most became prepay–meaning that bus drivers would no longer sell individual bus tickets on the bus. Rather you need to go and buy a a bus ticket before you ride. Whatever your thoughts about the equality of that approach, it nonetheless has been a progressive implementation across the city. Yet, people keep making excuses when they board the bus as to why they haven’t bought a ticket. But worse than that (if you want people to stop buying tickets on the bus that is), is that bus drivers continue to sell tickets to these individuals. At the time of doing so they might say “remember to buy your tickets next time” or similar but they do sell the ticket.

The other day when I was travelling on a bus route that has for a longer time been prepay only, a girl started to board a bus and attempted to buy a ticket in this manner. The bus driver simply said “we are prepay until 7 PM, see you then” and closed the door. She then said to passengers standing nearby, “They have to learn”. However harsh you think this approach is it will get the message across more so then grumbling but complying with people that want to be excused from rules.

While it is true that individuals can take individual action of discrimination claims against whoever they like, it is both expensive and time-consuming and piecemeal. If we are truly serious about ending discrimination (of whatever form) surely we need to take the approach that sometimes, some things are just wrong and the answer is just no. If we are as a country serious about social inclusion, increased participation and other good things then it is government that must take a more proactive approach and at all levels start saying no. Australians apparently believe in a fair go for all Australians. Sometimes that has to mean saying no.

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The ironic thing is that according to this and the accessible bus timetable for the inner west of Sydney on a Saturday I could probably get to lunch in Melbourne some 963 km away faster than I can travel from outside a depot next door up the road to lunch 4kms away.

To the extent that I had to once again schedule my day around the bus timetable, given that I want to look after the planet too.

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I’m honoured to have my first guest post, from PB who is a fellow traveller viewing the world from waist high. This post on the changing nature of disability politics and the language that travels with it. He is much braver than I in what he says.. Enjoy! J

Excuse me but what is the ‘disability fight’? Twice this week from widely disparate sources I have heard this term and am puzzled as to its inspiration and meaning.

Who is it against and when will we know who has won?

What is at stake and what are we fighting over?

Is it a fight towards acceptance, recognition, equity and justice? Are we fighting for social inclusion?
Is it a fight against oppression, ignorance and apathy or worse, the dry rot of passive paternalism.
Will it combat that sense of lowered values and quiet disbelief that this ‘fight’ affects each of us.

It is the fight we had to have or one we have been invited to? That is, spend some time in the ring, swing some punches at a nameless opponent then go sit down in your corner and suck an orange with a towel over your head, ala stressed budgie.

Does this fight recognise it is not about us (poodlies), that is its not a factional squabble of the sector?

Will it be likened to the fight against evil, crime or ‘terror’? A war against drugs. We all know how they end up, see references above to oranges.

Is it like the fight to save the environment or planet? One where we all take a responsibility for being a part of the problem AND solution. Were we all have impact and we can ALL change the situation. Acknowledged it is up to us individually as well as communally.

Or is it the fight we have with ourselves, the internal and infernal struggle against adversity, the challenge of self pride and of rising above ourselves, or rather our disability as the rest see (sorry perceive) it. Is it the battle of the badge, the slogan, the 12 second media bite. A fight to be heard clearly and accurately in the face of an eon of stigma and fear.

This is the lonely fight, the fight of the outsider, the caller of the elephants. Does it need to involve others always? Could it be the sort of path to enlighten (or darken) meant that many aspire to and others scurry from?

What is the battlefield? Politics, law, domestic policy, entrenched institutions, systems and practices, or is it in the class room, the family home perhaps? Is it wherever a significant other, spouse, friend or family member turns their back on you because your inconvenient, difficult, hard to include.

Does it begin when they say “But its ok you’ll understand, what else could I do, what choice did I have?”  many of you been a player in that fight. What choice did they have, well they had the same hard choice we had, to be true to each other no matter what; to act with integrity for what they knew to be right.

How will we fight this? I for one am excited by the prospect of reigniting the “Society for the Chronically Inconvenienced”, forming a unit, gathering arms, battleship, squadron, whatever and taking it to them, whoever them is.

There are also different approaches. Should we fight openly in public, crawl up the steps of the Whitehouse, or psychologically invade their thoughts, dispel their beliefs and place our magnet against their moral compass.

Why is it a ‘disability fight’? Is it because we don’t actually know the answers to these questions but we figure it’s likely that someone will get hurt, either already or through active service.

I’m puzzled truly, although I am cautiously pleased it has moved on from a disability issue, and that it is no longer a problem. I’m even ok that it is no longer a movement for those of us that were there and having these debates decades ago.Puzzled but confident because at least with a fight you get to name the target and opponent/s. You know it will get dirty, you know it will be tuff but you can choose the sacrifice you make. You also know that casualties are likely but that ultimately you know the side your on, and hopefully who is there beside you.

Thank you to J for the space and opportunity to go “blah” and for thinking it worthy of your blog. PB

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