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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On his OWN: Zach Anner

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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More than tolerence

Stella’s editorial on Ramp Up is spot on. We tolerate being just tolerated. We talk about respect, we might ask for it. We don’t expect equality . Therefore logically we don’t get it as often as we tell ourselves privately we should.

We tolerate really bad weather. We tolerate that annoying person who sits next to us in an exam clicking their pen incessantly. We tolerate a cold, a sore throat, that strange outbreak of warts on our left foot. When asking people to be tolerant of disability in our society, are we asking them to put up with us, to endure our existence?

Our unwillingness to expect more than mere tolerence might in fact have something to do with our individual situations and the individualness of our situations. I know that there are many days when I for one merely tolerate my impairment quite apart from any disabling effect that leaving my house might produce. This might as others are starting to argue, be the main weakness of the Social Model of Disability, that we don’t take enough notice of the individual effects of our impairments.

But regardless of why we have tolerated mere tolerance this is a vital call, and a timely one. We all seem to be getting less tolerate of each other. So the time to make do with tolerance of people with disabilities is over. We need full acceptance and incorporation.  Is it too much to ask that we be um … er…. citizens?

We can expect to get bruised and battered, but we’ve been there done that, haven’t we? We need to do that again, as individuals and agencies. Together. United. For ourselves.

Last word to Stella:

The time has come for disabled people show zero tolerance for discrimination, for transport we can’t use, for information that’s not accessible to us. We need to show zero tolerance for the restriction and denial of our human rights.

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the Social model of disability — a basic discription

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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oh what a beautiful Sunday — Inclusion 101

It was indeed a beautiful Sunday.

After staying up late watching any movie made in a parent trap theme, Parent Trap I, Parent Trap II, and the 1980s remake of the Parent Trap (don’t you just love what you can get on YouTube?) I slept really late, which was lovely and incredibly needed. I finally feel like I’m getting over the exhausted feeling I’ve had for about a month.

I woke up feeling a little medication hangover still lingering, but decided with a little help from my friends then it was too nice a day to stay home for long.

I  responded to an invitation to go to a blogger meet up in Coogee today, hosted by a blogger I started following about six months ago but had never spoken to; Chally. I knew I’d know at least one person from my off-line life, Mary, but that was going to be it.

But the appeal ran deeper than that. The accessibility information about the venue was posted for all to see on the original post. It wasn’t because they are expecting me, it was just inclusive, good practice and I guess, just the way it’s done in her head at least. I didn’t need to lift a finger, save my energy, disclose ahead of time, stand on my head, be forgiving/tolerant/accepting of compromise, prepare for embarrassment, carriage  or anything. I just had to decide to turn up and I did. One of the more active members of the community even created a Google map, explaining the accessible route. Again, this was all done before I even expressed an interest in attending. Wow. Thank you tigtog. Even the wet weather plan (which thankfully wasn’t needed) was fully accessible and the accessibility was discussed as part of the mainstream discussion, not as a “oh yes and”.

It was great to put faces to names and be reminded that we’re all just people. Great job Chally.

But it does beg the question; why in 2010 is it still such a surprise to me to be included automatically and so effortlessly by a small group of people that outwardly at least seem to have no obligation. There was not a Disability Discrimination Act lawsuit in the pipeline if they didn’t. There was no real obligation on them as my friend. That in the expected thanks congratulations or medal of martyrdom for their efforts. They just did it, presumably because they wanted to be inclusive and/or they felt it was the right thing to do. It still isn’t clear to me that they were even doing it for me, which feels wonderful. If those that claim to love me could demonstrate that so clearly, by just making choices. Social model of disability right here and working.

I did learn something though–don’t take a book, that you’re not sure you’re enjoying reading even if it is your current read. I’m not quite sure what it said about me.

I’m so sorry I had to leave so early. They are a great bunch of women people.

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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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This is hardly surprising ….

First UK Survey in 13 Years Reveals Significant Barriers to Participation in Society for Disabled Persons.

Based on the post from FWD, this report is hardly surprising, but S E Smith makes some interesting points firstly around the social model of disability.

Many of the obstacles encountered by people with disabilities are created by society, yet disability is framed as a personal failing, and we are told that it’s our responsibility to get the inclusion and access we need, even when this is functionally impossible.

and on a topic that goes hand in hand with getting around with a disability;

The survey also found that stress is a significant contributor in the lives of many people with disabilities, and when you are disabled, you are much more likely to be living on the edge.

No surprise there.

This reminds me isn’t it time we took a updated and realistic survey of real people with disabilities her in Australia, all of us who are willing to be identify as such, not just those who might currently get government help. There is more to looking after people with disabilities than budgeting for care packages and tea and scones money.

If we are really into inclusion we need to benchmark, realisticly.

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A lesson from Survivor

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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Book review: The Girls by Lori Lansens

Historically I could divide this blog into two topics: the “disability” stuff and the “book” stuff. This book is a novel about disability, so I’m covered both ways.

While it was at times a challenge to get through the book. pacing more than content, I find myself with the book now finished and paid forward I miss Ruby and Rose Darlen: known to all as The Girls.

The Girls is a novel written as the autobiography of both halves of a set of conjoined craniopagus twins who turn 30 during the course of the book. As with real autobiographies, it is a review of their lives – mishap or miracle – in light of an uncertain future.It is a desire to leave a legacy that is each of their own making, and in whatever way possible a private one.  Each sister has her own distinct voice and story to tell. In turns I found myself want to slap each of them especially when one is mean to the other.

It is a cleverly written book. I forgot more than once that it was a novel. The medicalness and the physical aspects are described up front and then left alone as fact — very realistic. The characters – even the sketchy ones are very well drawn being evolved at a variable pace as you would meet  people in any town.

Pacing varies but is largely good and at one point as one sister gets bogged in her own self indulgence crawls. But that made it real. There is good continuity.

It was sad, without being morbid and at least from my perspective very funny. It isn’t a book about their disability but about their lives, loves, losses and fun.

So that’s what I’ve been reading,

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Uprights behaving badly: Footpaths

I’m going to do a series of posts on things I wish those without apparent disability understood or did differently. It is from my perspective as a person who uses a wheelchair, but hope it can be useful more broadly. So to start with:

Footpaths: their use and misuses

My top 5 things six things I wish uprights got about using the footpath:

  1. Don’t just stand there – move something. Standing still at the top of kerb ramps instead of moving off it to allow people crossing to safely and legally get off the road. This is not the place to start a meaning of life conversation or adjust your wardrobe. I, like others need a clear metre at the top of the incline to safely complete the crossing process without tipping myself up or collecting your shins. For many of us who have different mobility issues we need to pick a direction of travel and keep moving as much for safety as energy or anything else so abrupt stopping is never polite. It’s like a car slamming on the brakes every 50 metres instead of going say 30 kph with on-coming traffic coming at you on either side. Also if I am obeying the rules of the road and waiting on the kerb ramp with you jay-walking in the opposite direction please don’t climb over my chair to get off the road.. My footplates are part of my personal space.
  2. While talking of footpaths they are not the place to mingle with five or six of your friends all looking and talking  inwards. Given I am waist high to most of you it can be very hard to attract your attention to keep moving (see above) and am often stuck yelling at people’s belt loops for some minutes waiting for one of the party to look down. Not everyone can sidle past or tap you somewhere that my grandmother would consider polite. I can’t tap you on the shoulder if I’m three foot tall.
  3. Footpaths are still first and foremost designed built and paid for to enable the safe pedestrian movement of all of us. They are not designed to act as a parking lot for prams cars or bikes, a community ashtray, a junk storage zone, a dining room or an extension of your business. While these uses are able to be incorporated in parts and more modern footpathing have integrated these uses, please remember that the narrow footpaths still need to fulfil the movement thing as their primary role.
  4. If you are over 12 do as our parents and the law teaches: please walk your pushbike on footpaths. It’s polite, non aggressive and saves kerb ramps for those of us who have need them to get anywhere not just get somewhere quickly. I know you are doing a good thing for the planet and all that, but polite is still polite. You are still a vehicle. You saving carbon by not using your car is great and something I very much support but the energy flow needed to incorporate your riding on the footpath for me is higher I suspect than for most other people (see point regarding committing to a direction of travel) in the other direction in a need for higher concentration, and the kind of stopping and starting of a machine that you are trying to avoid.
  5. While we are on a roll here can smokers please refrain from lowering your cigarette and it’s  plume to get me right in the face. Just as you don’t want it right near your eyes when your not smoking it – neither do I. I have even been ashed in my lap or on my hand or chest more than once. It might also be worth noting that this behaviour is not going to be good for any children in the area either.
  6. This same idea applies to the swinging of handbags and backpacks in the vicinity  of my head shoulders or back or failing to look in all directions (up/down as well as forward and back when exiting a shop to re-enter a flow on the footpath. Its like entering a flow of car traffic without checking your mirrors. Bumping the back of a wheelchair isn’t like bumping a chair leg.. I can feel it. If checking in all directions before you move seems exhausting my only solace for you is; if we all did it more we’d probably all have to do it less.

The main things I wish that “uprights” understood about footpath/sidewalk  issues are:

  • everyone is trying to get somewhere to be with those we love. I know all the stuff about vibrant footpath culture, but we need to be able to get places to enjoy the culture.
  • everyone comes in different sizes so please look down as well as behind. It can be humiliating talking to belt loops for 5 minutes.

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