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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As the dust settles

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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A rolling Moss

I’ve been listening to podcasts of Late Night Live. Philip Adams and I would probably not agree on much, but I do find him fascinating as a thinker and as an exposure to other good thinkers.

The other day, I was listening to him talking to Bill Moss, who has a rare dystrophy, who runs his own financial consulting business in order to fund research into his condition.

I found the interview fascinating, in that his approach as I think being similar to mine, just get on with it. We have a few interesting connections but I don’t know him at all.

There was quite a bit in the interview about government funding for research, which you would expect and his history with his disability. However, I noticed that quite beautifully Philip did not talk about his current level of impairment or dwell on the question of prognosis, which piqued my curiosity but no more.

They talked about the foundation; It’s work, it’s funding. Interestingly they also talked about stem cell research and the fact that ultimately it won’t make a lot of difference to him. I got a different perspective on the purpose of research and a longer term approach.

Phillip tended to want to turn the conversation into built environment and government discrimination, which was great but you can hear the struggle between interviewer and interviewee to direct the conversation between positive future looking and reminiscing with the lessons that are still relevant

It was interesting that they talked too about the glass ceiling around disability issues and the extra effort required to crack it with a disability.

There was a lot more;

  • Lime taxis — including a history lesson in how long it used to take to wait for a cab
  • Built form experience - including the fact that personal experience including embarrassment breeds understanding and passion
  • The experience of retiring young and the change in how you are received.
  • Aboriginal employment using tourism and cottage industry and taxation to reduce the costs of unemployment benefits
  • Hope, politics and disability.
  • Cost of disability

and more

If I fell over in China, I’d have 20 people rush to help within a couple of seconds. If I fell over in Pitt St Mall (in Sydney), it’d take a 3-4 minutes for someone to come and help.

I think Bill is right while the compassion and empathy might be better– I think the attitude and built form is lagging behind.

He’s realistic, refreshing and worth a listen.

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And in the blue corner

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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the cost of a vote

I perhaps should have warned folks not to get me started on election equity issues, but a good mate of mine added this to a comment on this post

Still distrubing to see so many polling booths inaccessable, though at least in the Marrickville LGA it’s better that it was at he last local government election.

Yes well — it might indeed be *better* but really that’s not saying much now is it? I know people from the last Federal election who had to get excused from their democratic right and responsibility to vote (it’s compulsory here in Australia) because they had assumed there would be at least one they could get into in their electorate( of say 20 polling centres), so it was too late to pre-poll or postal vote. Different electorate than the one refered to in the comment mind you.

As for me — I have to drive or be driven to cast my vote despite voting in an area where there are booths much closer than the one I will be forced to use.

How does even having to think this hard about how one is going to do what one is democratically entitled and legally required to do (quite apart from deciding who gets your vote), reflective of Australia signing the UN Convention on the Rights of People with a Disability 2 years ago.

Accessible buses are unreliable in this area on Saturday and a cab will cost me $20 from within the electorate to go vote even with my discount. How exactly is that fair? Almost less hassle to not bother voting and pay the fine that ensues. Very good for democracy. Not.

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identity matters

This is a good post about identification as a person with a disability, for a women with a mental health issue.

It brings up some interesting thoughts for me about “what actually is disability?” That’s medical vs social model stuff, but its not just that. Its about the labels we as people with impairments use to define and describe ourselves. What boxes we put ourselves in and how easily or not we communicate with those in the other boxes of disability.

I find myself now straddling two of those boxes more often these days. So now the whole question is “to tell or not to tell” is a live question where before I did not really understand it; except as I defended theoretically an individuals right to non-disclosure. I could not understand, untill recently how people could choose not to “give details” and yet still want to use the political, social and practical elements that come with the tag. i fought for the right to non-disclosure  because it is an option and I’m all for individual choice. I have many friends with non-aparent and often non disclosed disabilities whose choice I respected. As is often the case though it is not until one is given the choice that one is aware one has a choice….

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