just saying (and please excuse the hash tags)

Can I just make a minor point regarding the debate in #australianpolitics at the moment on #gaymarriage . While the debate is vitally important, this alone will not be the silver bullet for the #equity and #inclusion of all #Australians as some seem to be claiming.

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Friday fashion: the first question

Recently, I volunteered to be part of a media or research project on disability and fashion. The co-ordination was done by a Dr Jill Bamforth a social research academic from Melbourne with an eye for fashion and an awareness that there must be challenges finding clothes that work on any number of levels for people with disabilities. She was also aware that there would be an unmet market that wasn’t necessarily being served currently.

After at least two brief phone calls that had technically or timing issues in which we established among other things, that; I didn’t like centre-back zips, can’t wear pantyhose, but can do thigh highs but don’t like the limited range (even now when there is a decent range in pantyhose as there has been recently in Australia). She then sent me 11 insightful questions, inviting me to answer without the pressure to answer them all. After that was an equally insightful hour-long phone call.

As with most well-written surveys on topics you have at least a passing interest in, the process of thinking that went into the preparation of my answers was fascinating.

Here was the first Q and A

1. You say (as others do) that it is important to dress in a professional way in order to be taken seriously at work. What does this kind of dressing entail – a suit/make up/ heels/hair cuts and colour, for instance?

How long have you got…. It involves all of those things above and balancing them out for an overall effect, based not only on the event you are planning for and the impact you want to make (same for everyone I guess) but how physically you are feeling (energy) and what parts of your body are working and what sort of movement you are anticipating — transfers etc.

For example I have two pairs of very different work shoes, that from the top(the way most people will see my feet) look very similar. This is deliberate. However, if I wear the higher heels (which are more comfy on my footplate) and my foot goes into spasm, my ankle gets twisted and it becomes a painful and visual distraction tht can last hours.

In addition as a wheelchair user I am viewed as sitting even when I’m moving which changes the parts of my outfits and body that are visually apparent.My breasts and my shins are more visible than my waist or whether I’m a pear or apple. So traditional fashion advice or mannequins are only so useful.

Also the wheelchair in one way is a fashion accessory and frames me so I dress to either not clash with it, or to complement it. Trying to igbnore it has not worked in the past. Keep in mind though that you want to be distinguishable from the chair at all times.

In the more traditional version of your question, yes all these things you mention contribute. I always tend to up dress because I get judged already on the fact I sit. I don’t wear a tracksuit at all except in bed. I always wear foundation. It might be vanity but the logic is to come over as a grown up, let alone a professional. I’m in my 30’s.

She was interested in the wheelchair as accessory bit, which I might go into on another occasion.

 

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Quote: may I be

To love someone deeply gives you strength. Being loved by someone deeply gives you courage.

Lao Tzu

I am blessed. I have needed heavy doses of strength and courage in my life. I have had those that loved me “just when I needed it most”.

The courage I have needed in the last few days might well surprise some folks. In fact I know it has. In ways that has damaged at least two friendships.

But the courage I needed was not physical. It was of integrity. I needed to own my truth and recognize that for me at least loyalty to a broader cause was not my highest calling. It was to a principle, this time one of inclusion. I assessed each woman on her merits as I was asked and on the issues I was asked about I spoke as I saw.

IT was worth it all.

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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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Changes at the Commission and a point on making arguments

Having separate Commissioners for each portfolio, at the Australian Human Rights Commission seems much more logical. It also looks like the Commission is getting some fresh resources and that is always good. The issues and debates covered by each arm of the Commission and the groups they talk to, with and advocate for are similar but diverse and need a full time specialist with the time and resources to move the agenda forward. In my mind though it doesn’t follow that the advocate must always be one of that community.

I’m not surprised that Commissioner Innes is taking on the full time role for disability. I like him a lot and he is great in the role. Articulate and observant, with an ability to get those who don’t have a direct experience to “get it”. He also commands enough respect among those of us who do have the experience to be a leader among us. Not an easy job.

I follow him on various social media platforms and my eye is drawn to his updates regardless of whether they are on race or disability. I have heard him speak on race issues too. I have read his words. I get “it” too now at least a lot more than I did. Part of the power in his arguing for racial tolerance is the fact that while he clearly understands marginalisation, he is white. Yet he is passionate. There was value for me in that I found myself listening more closely I think because it changed the way I valued the argument.

I understand the whole argument of nothing about us, without us. I know the value of direct representation. We need to be at the table, front centre and visible. All the time. We must be there.

All I’m saying; there is power when someone outside the obvious circle makes our arguments powerfully too. We value add. Different voices, especially perhaps unexpected voices, bring a different power and different people to the table to listen and learn.

Maybe that’s a sign of true inclusion.

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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 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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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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A vision or not

I did some googling and searching on YouTube for videos from Australia by people with disabilities. I came up sadly very short. Nothing really from a sense of community of disability here in Australia. I don’t think we have made the leap between sector and community; between political and social.  Both are necessary, but I fear that we are too busy fighting with both the politicians and sadly ourselves to share just thoughts.

So here are my “just thoughts”  on a recent trip to Melbourne, on seeing 18 people with apparent impairments, on inclusive process (ok I got a bit political) and on “drop jaw”.

The lighting is bad and my voice was not ideal, but this is my offering. It goes for 18 minutes (which means it is split on YouTube but in one piece here.

My thoughts on inclusion and access in Melbourne Australia from Joanna Nicol on Vimeo.

There may be others, if I can find the charger for the camera!  

Blogged with the Flock Browser

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