Tag Archives: disability

And in the blue corner

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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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Book review: The Girls by Lori Lansens

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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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Season of bookishness

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It’s a season of books for me with a couple of reviews in the works. Book shops are my friend – soothing and friendly. Without the need to buy, although now I am. Books I haven’t been able to find in one bookshop have been there to envelop me in another.

I discovered a gift voucher from three years ago that miracle of miracles was still valid, by virtue of the sheer age of the card — they have upgraded their cards so the newer ones — more recent than one year have an expiry. How strange. With it from Borders I ordered a book I’ve heard as an audiobook but now want to hold. called The Trusted Advisor (seeing as that seems to be what I’m doing now…). The audio was good but it refers to lists and tables and maybe I’m just old-fashioned! I want to hold the book. I’ve also bought a book on running a consultancy )again seeing as that seems to be what I’m doing now.

It was a lovely bookshop, well-lit, wide enough aisles to park and not feel like a blockage, clean but cosy enough that there were more than a couple of folks very much asleep on couches which no-one minded and teenagers reading children’s picture books in discussion groups but with the mild awe of a library. Fellow book lovers and accessible. This last point re-inforced by several other folks with apparent impairments floating just as seamlessly and buying.

I’m just saying, again. If you build it ……. they will come and spend.

If you don’t build or create to disable ……. everyone will be more comfortable.

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the cost of a vote

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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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a handicap on language

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Update 7:15 pm Since linking to the news piece it has been updated to include comments of a similar nature to mine regarding Mr Peacock’s comments from another disability organisation here in Australia

This election has been scareingly un-inspiring this time around. There doesn’t seem to be a good place for a thinker more interested in the long debate than the sound bite to be.

Then we get this from a former leader;

“You’d need to be pretty handicapped not to appreciate this Government is dissolving before your eyes daily,” he said.

Yes indeed unfortunate. However Bill Shorten who as Parliamentary Secretary responded in two ways one worked one didn’t. Yes Mr Secretary you are right it wasn’t the most appropriate choice of words. But neither sir was your response.

He doesn’t have to attack and use the intellectual disability of thousands of people and say that that is the distinguishing factor of whether or not you know what’s going on in this country or not.

We need to claim language back. The definition of handicap includes

a circumstance that makes progress or success difficult .

But more on that at a later point.

Even in the more unfortunate interpretation of the word handicapped can refer to other impairment types than those with intellectual disability even when referencing the general public’s “appreciation” of the current situation. My perception of the current state of affairs is impacted because I live with an impairment. It’s not intellectual one, but it does impact the choices I make and will make in 12 days time. Just as you picked up on the intellectual disability angle of the quote, you missed the reference to sight loss. But maybe the votes aren’t there with the vision impaired community as with the carers lobby eh?

Don’t play favourites please Mr Shorten. Some of us are noticing.

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Tuesday Tiny: old faithful

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I’m in the slow process of retiring my 7 year old wheelchair. This is the seed of a much bigger blog post soon, but in the meantime here is the old chair at the autumn of its service.

my current soon to be retired wheelchair

my current soon to be retired wheelchair has travelled literally with me since 2003

Well done good and faithful servant.

This is a hard process for me and incredibly personal, but today as i floundered a bit in a way too big hire chair I’ve been forced to hire as an interim measure because Paulette can’t get me to the corner store,it sstruck me how personal we get with our mobility devices. Indeed part of disability awareness training is “don’t touch the back of wheelchairs as they are an extension of the individual using them.

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A vision or not

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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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learning new tricks

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This might be an old series of videos, but they look like they are a good idea.

I never really had rehabilitation as such, because my primary disability has been a part of my life forever. I certainly wasn’t neglected by the medical and paramedical professions but my starting base was certainly different and I think expectations were as well, not least of which my own. I had physio and occupational therapy and several surgeries to try and get the most of my lopsided form, but never intensive rehab. I don’t think I was ready to be a good student either.

My strength and energy levels are different now. I certainly seem to myself to be weaker with more general soreness from over 30 years of utter dependence of very few muscle groups and no real direction on how or which muscles to add to my arsenal. Others with more stubbornness, foresight and/or courage developed transfer techniques, wheelchair management processes and various other routines and physical strength to get on with “it” independently. I have to, but mine are a lot less physical, a lot more mental, and a lot more dependent on a set way of being.

So in a sparkle of interest to see what equipment or ideas were out there led me to google “getting dressed in a wheelchair” as a starting point. A series of videos demonstrating his way of doing various transfers appeared best relevant perhaps to c6 Quad males but encouraging if nothing else. This video describes him and why he’s done them.

No I’m not going to do any such demos not yet anyway. But I like the logic. Information is power, but only when you know you want it and know the questions to ask (or even that you can ask!). The rest of his videos are here.

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An open letter — rant, long — updated

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Updated today with the letter that I actually sent this am
An open letter to the
Minister for Transport
the Honourable Mr David Campbell MP
GPO Box 5341
SYDNEY NSW 2001

Dear Sir,

I’m told I tell a great story whether fiction or fact. My education and experiences over many years has reinforced that telling stories is a good way to understand a new topic, or a differing point of view.

So I’m going to tell you a story. It’s a story starring me and the accessible bus network.

By way of background to this story; I use an electric wheelchair to get around and have done in one form or another all my life.  I’m in my 30’s and have worked in public policy development my entire career. Currently, I’ve also got other health issues that affect my ability to sit for long periods without pain as well as fatigue. These last two are new developments which require a fair amount of planning, often taking a cumulative approach.

I’ve been using the accessible buses on the network since they were first put on at the depot in Ryde some 15 or so years ago. While I do hold a license, I have elected not to drive in Sydney as I’ve held the belief for 20 years that there is too much congestion here and an unhealthy reliance on private vehicles for a world-class city. I do use taxis but try to avoid doing so for direct routes.

Last Friday I had lunch plans in South Newtown a straight 4.4 kms from where I live. Lunch was set for 12:30pm. I got to the bus stop early for the scheduled 11:05 service which was the latest one I could catch that would get me there on time. I have learnt to arrive early because of the flow of traffic close to the Tempe depot. I have also learnt to expect anything. When an un-timetabled accessible arrived at the stop at 10:40 I decided to grab it in case this was the 11:05 arriving early, or otherwise affecting the scheduled service. The bus ride was pleasant and by soon after 11am I was sitting in the shadiest spot I could find across the road from my destination reading. It was as you may recall rather warm.

Lunch was pleasant. There was a fight happening at the bus stop directly outside our venue, so just before 2 pm I accompanied my friend south towards his car and a safer bus stop than the one at the cafe. I waited at the next one and after 5 minutes saw an almost empty 422 with a ramp came up. I stuck my hand out and it went straight past me.

Reasoning that my visibility must be poor, I went straight back to the bus stop near the cafe which is more of an interchange but directly in the heat.

I waited expecting to wait an hour. People queued behind me and looked a tad guilty when they got on buses (4 inaccessible 422’s, three or four 352s and half a dozen 370’s mostly accessible). Over the course of that hour four of those waiting were mothers with prams, one of whom gave up and headed towards the train station, while another escaped into a 370 for the air-conditioned comfort, given her child was just asleep.

As the time approached for the 3:05 service. I watched every bus that arrived, my breath catching in my throat with bursts of excitement then disappointment as each service passed. I looked at my phone only to check the time. I did not dare read lest I miss its arrival and the chance to get out of the heat. I felt embarrassed and humiliated to have been sitting there watching people arrive to go to the gym or the supermarket and then leave all fit or with a full load of groceries. I was sure it would arrive soon.

School children released just before 3pm literally flooded out of school overtaking the already crowded footpath. They  boarded buses without hassle. I stood my ground. My bladder was under increasing pressure because even if I had left the stop there was no easily wheelchair accessible public toilet anywhere nearby. I have had to train my bladder to assume that for one reason or another toileting in this area is hard and to hold on, dehydrate and rehydrate where you know there is an appropriate toilet.  Though stressed and uncomfortable, after an hour and a half of waiting, I lost the battle of the bladder about 3:30pm further adding to my discomfort and embarrassment.

Long before this time I had been sitting up for too long and was in severe pain as well as spasm. I had considered booking a cab, but given the time of day and the shortness of the journey as well as the awkward pickup location, decided against it. I began to feel like I should cancel all my commitments, my work, my social and civic, my recreational, even the practical things like shopping and medical. While I don’t consider myself house bound and feel I have a lot to contribute, days like last Friday make me feel quite hopeless. Some of the bus drivers assured me it was coming and I got a few apologetic glances from drivers of  Route 370, for which I’m grateful.

Sir, the 3:05 422 bus scheduled to be accessible never arrived. It wasn’t that it was too full. It never arrived.

The next one I could catch was one soon after 4 pm and I was home at 4:30pm It had taken me 6 hours to have an hour and a half lunch 4.4 kms from home. The bus trip home was as pleasant as it could be, the driver kind and efficient given my obvious heat and sunburn but oblivious to the delay.

I lodged a complaint by phone with 131500 that afternoon and am awaiting a response. (Ed note Heard from depot at 1:55 pm today apology included)

In writing to you I’m trying to give you a sense of my experience. While perhaps more dramatic than most times, this is not uncommon. In order to travel from South Newtown to the CBD for work for example if I have to be at a meeting at 10am the latest bus I can catch is the 7:34am (assuming it’s ramp is working and its not full). I tend to organise my life around the bus timetable and have to build in a large buffer every time that my contemporaries without disabilities do not have to include, both in time and in money (when I cannot afford the time buffer). I must point out that these long delays do not happen every time. But as with my forward journey last Friday, it happens consistently enough that it must be built into planning my day, often leaving me embarrassingly early.

I congratulate you and the Ministry on the progress towards the Transport Standards with which I am very familiar.  Statistically NSW is doing quite well. However those numbers do not reflect my regular experience locally.

While I understand that all times given on timetables are approximate, given the infrequency of some timetabled accessible services, is there any way we can assure that these ones turn up?

If we only let women or another minority on at best one bus every hour (and expected them to build their lives around it and be grateful), there would be an almighty outcry. Why must it in 2010 be any different for those with disabilities, trying to get on with life in an ecological way?

Sincerely yours,

Joanna Nicol

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pavement wars part 1

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It is perhaps unwise to get me started on this ….. but well you can skip this entry!

From this post on both scooters and pedestrians and their respective relationships with those in wheelchairs as well as retail space design.

It may be that there are incompetent scooter-users driving into market stalls and store aisles. Or it could be that having no consideration for people with mobility-impairments, market traders and store workers have piled displays and produce up in walkways, leaving only narrow gaps for people to walk through and insufficient room for a wheelchair, scooter, anyone with crutches or an otherwise wide gait. My wheelchair is not nearly so bulky as a scooter, but even in a supermarket I bump into things because there isn’t enough room. <emphesis belongs to original author– but heartily agreed with>

Here here. And then there is this:

I rarely bump into people, but it is hard work not to. Some pedestrians can be extremely absent-minded, expecting to be able to move about at terrific speeds and suddenly stop or change direction without collision. Quite apart from the fact that such people put themselves at risk, they are a genuine menace to those ambulant disabled people who walk slowly and are vulnerable to being knocked down. They should have to pass a test! If a pedestrian is involved in three accidents, they should have all their shoes and socks confiscated!

Unfortunately I don’t think removal of footwear is nearly as drastic as the removal of a car, but I like the sentiments. The mere removal of footwear would simply leave a lot of bare feet which would in turn lead to more angry/nervous/panicky/ people glaring at anyone in a mobility device. Perhaps amputation for careless bipedal?

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