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Disability

Stella, oh Stella

Today, I'm in a bit of pain. My heart aches. Stella Young is gone.She died on Saturday. “They” are now saying it was an aneurysm.
 
In many ways it wasn't as if we spent a whole lot of time together. I was not close. We knew each other, in person a few times, but mostly through the writing we did, to each other and her public stuff.. We laughed. We rolled our eyes at the same patronising behaviour we both received – especially notable at a conference about the national disability insurance scheme. We both wrote. We talked. She kept encouraging me to submit to RampUp but I never did. I was simply lacking in confidence. As I am now, writing this. She and I didn't agree on everything. Unlike her, for example, I can't self identify as a “crip”; much much less a “super-crip”
Yes, I'm sad that's she gone. For her own presence in the lives of those she more directly leaves behind. Those who will miss the daughter and sister and lover and drinking buddy that she was. I will miss my friend and as much as she would hate it the inspiration that she was for me. Mostly without even knowing it. She was more than that. She was like reinforcements for me. She provided me with the mental space to breathe laugh and reboot in my self advocacy. In my sense of being different. I got courage. I got space to regroup and be me and not feel so alone, regardless of whether I agreed with the specifics of what she said.
Listening to interviews she did yesterday filled me with a slightly more global sadness though. I said in an email to friends that:

So close to my bone. It actually stings. We don't have that many good ones left. Really we don't.

That's the thing. More that the individual herself, but partly because of her values and her actions, we have lost both a curator and participant in the debates and discussion about and around disability, those internal and external moments when even we needed to kick ourselves up our own ass. She could do that, like her or not. She wanted us to have enough self respect as humans to have some self expectations and a place to safely debate and build without patronising overtones

I confess the first couple of times we spoke I was awe struck with how articulate and ballsy she was. But also how funny.

Vale Stella. Well done.

 

 

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stewed ant

Edited repost from elsewhere written by me.

willowdove blog appears to be looking strange and has done for a while. Another reason I’m scared of it. (now fixed — the blog, not the fear)

But who knows. Writing though might be (was) the boost I need.

I know, there is something of a contradiction of private blogging.

I’m reading more. That was the idea behind going back to uni, even if I don’t finish. Give my life and my brain more structure. It is certainly doing that. It is nice that the topics are generally outside my work area, but inside a long-held area of interest. I’m keeping up with the readings on top of everything else which is good. I am not sure how well I’m retaining information though and for this week it all seemed to go quite quickly and easily into my head. Therefore, I’m worried that I’m missing something huge and am really quite dumb. But it is giving me permission and the space to think which is what I wanted.

Philosophy of the Human Person is one of the subjects. Last week was on the right or not to have a post birth abortion if the child has a severe disability! Ouch. Bit early in my relationships with this new self, these new classmates to go there for me, although I gave an opinion. I struggled not to as, real or imagined it felt like the elephant in the room was a whopping great wheelchair in the room, with me in it and the preconception, again real or simply in my head, that I would have an opinion.

The content and its implications was scary enough without the social baggage and memories of my own.

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Raw, mild updates

I have been writing lately, just not posting. After losing a post this morning I wrote the following on 750words as a head empty. Step gently as you read this but to prevent me from losing the nerve to post I will post unedited, typos, mis-capitalisations and all. The idea at the time  was that my fingers didn’t leave the keyboard and that I didn’t pay any attention to how it looked .Hence the raw title. There are probably the germination of three posts here. I won’t promise, but if you see me repeating myself in future posts, forgive.  

The only thing I did edit was I turned a few specifics that I won’t name into “various reasons”.

A bit frustrated. After months of avoiding the blogging thing because of various reasons I woke up this morning and, after listening to the 3d audio thing, decided i’d start working on the post to introduce the new wheelchair that actually and finally arrived yesterday. Then I had the whole “which writing tool do I want to use here?” internal debate, which led me to reading the article about Obama’s decision minimising (to avoid decision fatigue) which in my own mind led to a blog on its own about that whole process as a phenomena linking to the fast company piece. So i wrote it it was casual, without being too draft-y, explained that now seemed a good time to reboot the whole blogging thing again, and was just saving the post from the draft screen to be able to add the link and was sure I had saved it but something went wrong and I think I’ve lost it. I was in the zone, it wasn’t my best piece of work but I was definitately doing something and re-vitalising. I was useful.

But interesting, i’m not really that far off that feeling now and maybe the previous post,  this decision making tree stuff isn’t that valuable on the blog especially as an re-intro but might it has served its purpose as a free write or something. I’m still writing now aren’t I? I have overcome the whole question of which program to use and maybe just use this as a cut and paste starting point. I like the fact that I seem to be able to see the resistance ok, even yes feel it and work through itr even here. I’ve always noticed when the various self-help gurus would talk about letting thoughts go, float away and thought that meant ignoring them or just being disciplined. I’m sure that helped. I think it was better than nothing and certainly better than sinking into the feelings, but it wasn’t quite the same as the thing I’m talking about. Choosing different without the denial but in spite of feelings and perhaps better before the feelings can have an inpact because it will feel better each time I choose won’t it? So if I want to be a writer, yes I should do it because I enjoy it. Because I feel time and even words fly by but I can’t afford quite literally to wait till I feel like writing, or not just then. I should fill my time with the activities that improve or could improve my writing regardless of how I feel at the time, and pear back on the other stuff. seeing myself as a writer is more than a romantic gesture here. As that muscle of deciding gets stronger I will feel the flow more likely I’m guessing. I’ve slowed down a bit in the last two hundred words I’ve noticed distracted by leg cramp, noise and word count and grabbing too hard onto sentences that now are long gone, but i do think the flow is actually better and so yes I’m getting some reward for sticking with it.I must write more regularly anyway to capture thoughts like some of the people moving stuff i noticed yesterday driving around in the new chair, how people saw me just a little bit differently i think as being a person not a point of pity, how I was struggling to find a speed that felt right. How I felt like more of a person and strangely more part of the action and more visible. People were a bit more anxious. I was more anxious. How I’m over how torn up the footpaths are and what that does to the camber, and how everybody seems to want to use the flattest bit for themselves be they pram, shopper trolleys, street furniture, slow walking couples meandering right down the middle, the footpaths can’t handle all of it and leave enough space for me to apply the breaks when I need to because every time there is a gap that is a safe gap to leave it is intercepted. this means going out is painful as people don’t like me to inter up their flow or look like I’m going to hit them but I need to assume that the camber will throw me into someones shins! I should go out for a long roll to help condition the battery but I’m not sure given pre-existing decision fatigue and the prospect of the above or thinking where to go will keep me in bed and the chair today unused.

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Tuesday tidbit: wish I’d known

Wish I’d known about below the line last week. And had electoral commission staff patient enough to let me decide between above and below the line myself (as I have every other election) without pressure and with a proper privacy screen.

For those wondering about my broader reaction to the election and/or my voting experience, I’m working on an email to a disability org so a post or two will no doubt come out of that. In short: could be better, could be worse.

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1/12

So Redfern station is to get a partial solution to access eh?

I understand the government wants to get people to Australian technology park, but what then? And it doesn’t really address what I see as Redfern’s main role in the system -that as hub.

I agree with REDwatch it’s a step in the right direction. My worry is that Redfern will as a result go to the bottom of the to-do list for future upgrades.

I also wonder what it says about the government’s lack of expectation of us as full citizens with full contributions that one platform is meant to be enough

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A cautionary tale aka: of Picolo, cake and dodos

First off, this is a rant and a very long and personal rant. I’m sorry to my new readers. But it might mean I start posting more regularly :-). That said

I am a woman with a personal history of faith in God dating back to my early teens and a background in the Christian Church from birth. I went through a brief but intense period where I was a bit more literal than I am now in my interpretation of the Bible and its teachings. I have had various periods of doubt and wilderness walking, more around the Church than God, though,  as the common denominator between the Church and me, and the all great “omni-everything” God has been given due responsibility and we have had many emotional “rounds in the ring”. I’ve been through rounds in the ring a range of things including over my disability and whether God would have me walking with two good arms this side of whatever the next life is. Our hard-fought for conclusion on that issue ended up being that God would give me strength to endure and; in the words of a hymn; “”Do every day, what I have to do”. I’m intentionally not evangelistic, believing each person has to find a path (plus the evangelists tend to scare me; see below.)

I’m fairly private about my faith. believing  as role models have before me in Mathew 6:1. In addition, my faith and theology have both been a bit unconventional and certainly well wrestled with so tougher (maybe) to encapsulate

As would seem logical, my disability has featured in my deliberations about faith, though it is far from the only factor that has impacted on my faith. However strangers who are Christians, have, at various points in my life, worn their religious convictions on their sleeves and sought to pray, loudly and uninvited that by their prayers (because mine are never enough?) the devil would leave my body, my “excess sin” would be removed and I would, in the middle of — insert main street here, get up and do cartwheels. Un ramped/uneven  Churches in my past have had mixed reactions when being asked about a ramp. They have either told me they don’t need access because they will pray for me and therefore I will just amble in, or they have built one, like a human rights issue!

With all this as long-winded background I invite the brave amongst you dear readers to review the following online discussion held today, two weeks after I had a batch of three such public healing “moments” in the space of 7 days. I’m reporting the first and “worst” of these to NNNNN and reproducing with minor edits and their permission here.

Me:You at your computer?

NNNNN: Yes

Me:Ok. How about I tell you the worst of the three healing events? I’ll tell you line by line to keep the flow going and will let you know when done.

NNNNN:Shoot!

Me::-) Head or lung or back?

NNNNN:Any.

Me:Ok, remember last time I was there and got ready for a function….?

NNNNN:Yes.

Me:As it turned out the function was a lot of fuss over nothing and only went for an hour …

So I rolled up to town hall from circular quay…

NNNNN:Yup.

Me:And decided to sit at jet cafe outside by myself have a silent fume at the event and a coffee…

NNNNN:I remember Jet Cafe.

Me:I had my headphones in and was half way through my coffee when a woman (50 year old professional traveling solo) sat facing me at the next table

We smiled at each other a couple of times

Small talk as she ate ensued.

NNNNN:Then?

Me:Jobs

Traveling

Married/not married

Coffee and shopping in Melbourne

Disability access Sydney versus Melbourne

Etc

I happened to say “goodness knows” to something she said Jesus would know

NNNNN: mmmmmh

Me:My first red flag. We agreed we were both Christians and I explained that my faith helps me cope

She asked me how I came to a relationship with Jesus

I gave her my spiel

I asked her her story – safer to get her off the subject of me and keep her talking of her

She was born again at 24

Jesus had told her she was going to marry a pastor and pointed him out to her personally.

She has brought many people to Jesus including whilst being hospitalised in Europe with a dvt by Jesus just to bring the woman in the next bed to Jesus.

Me:All this time I keep saying god gives me the strength to live with the CP

NNNNN:Yes?

Me:She goes inside to ( I thought) pay but instead orders a round for us of coffee and cake

I had prepaid my first coffee

She sits opposite me

The waiters remove the other outside tables (packing up)

We eat the cake

She talks about Jesus and how many times she has seen great healings

You have never seen me eat cake so fast but my upbringing said I couldn’t leave though I made noises and moves to do so

NNNNN: Ahhhahh!

Me:She asks if she can pray for me

NNNNN:Ouch!

Me:I say thank you that’s kind and if she wants to add me to her private prayer list I would be humbled but I don’t believe in public prayer nor in the laying on of hands

NNNNN:Yes?

Me:I quote Matthew 6 ” do in secret” at her

NNNNN:Yes?

Me:No good

She wants to cast the devil out of me and restore my body and my faith.

Jesus is telling her to do it and do it now

NNNNN:Ouch!

Youch!

Me:So she bounds out of her seat stands next to me with her feet positioned so if I was to reverse I would’ve hurt her- though I don’t think that was her thinking.

So there are no other tables nearby now and I couldn’t go back or forward

NNNNN:You are trapped.

Me:And she had one hand on my “evil chair” and one on the front of my head

I ask her three times again not to

NNNNN:

And she’s not listening.

Me:I say it is unwelcome and cruel

She says its the devil resisting

I quote scripture.

She says the devil quoted scripture when Jesus was tempted. She was right of course he did.

So I decide to let her get on with it and not make a scene

Well…

NNNNN:Yes?

Me:She goes on and on and on for 25 minutes

NNNNN:Ow!

Me:Casting the devil out of my body

My head

Heart

Slapping me lightly on the back of the head

Telling god that I am scum in his sight because if I was forgiven I’d walk away from the cafe

You name it …. I got it …

NNNNN::-(

Me:It went on and on and on

The worst version I have ever got.

Seriously.

NNNNN:I see.

Me:Meanwhile. My prayer was something like. God if you want to have me walking and with a normal arm I would be grateful but if not if you’re there please move this woman’s heart away from doing this.

NNNNN:At least just to move this woman away.

Me:God didn’t do either.

She finished her prayer. She believed god would work the miracle as she slept. Or I was a devil sent to test her. It was one or the other.

Left me her business card and walked away

NNNNN:Whew!

Me:And I was left shaking but not walking

NNNNN:Shaking indeed.

Me:God let us both down that night. It started to happen two other times that week. There was no sanctuary. I’m over it. I’m over being the means by which other people get to feel better and get their heavenly brownie points.

Scared you off?

NNNNN:No. Just taking it all in.

I’m just sorry you have had to endure these unpleasant experiences.

Me:I think my faith is officially gone the way of the dodo. It happens too often and I don’t see a lot of the God I believe/d in in practise.

NNNNN:God will not intervene?

Me:I don’t expect an interventionist god. I want a sense he can and will protect me and work on people’s hearts.

NNNNN:God doesn’t act in the same way that woman wants to.

Me:What I’m left with is either he’s passive or he doesn’t give a s@@t about me.

NNNNN:An uncaring God? Could be that there are too many who don’t let God care through them? Could there not be a few, though, who do?

Me:I don’t know. Honestly. But right now I need to go to a meeting.

Love

Joanna

NNNNN:OK. Thanks for sharing the story.  May my hugs go with you. Love. NNNNN

To a selection of my Christian friends after my third such moment I sent:

Why do all the religious cocoos come out at once and try me for size? Just got caught briefly by another one. My third in a week or so. Over feeling like I’m up for everybody else to earn their brownie points just because I sit. ;-(“

The silence from some of those friends, some of whom I’ve known for over 20 years and through other really black holes was deafening. One such trusted friend quipped later (admittedly without the above event background, but with I thought a good knowledge of the value I placed on my faith) that my doubts were because the Pope had resigned.

Although I get that these stupid healing actions are the actions of some fallible Christians, not God (and I’ve had other good Christians, like NNNNN who are also fallible members of the broader Church try and help me process this since), I do blame God for this one. For not protecting me . For making me go through this largely alone. AGAIN . For not shutting these people up. For not sending a stone tablet down as an appendix to the Bible telling folks that physical illness and disability are not evil. (There would be other stone tablets of course).

I can’t shake this one. It has been devastating. Usually my admission of faith and my explaining that Jesus helps me cope are enough to prevent these full-blown attacks, not this time.

It leaves me exhausted and lonely (my non Christian friends don’t get the grief either, almost “what took you so long”), sad and feeling like I will always be suspicious of people that say they love Jesus, whether I ever believe again or not. I fear I’ve wasted 23 years of life in the boxing ring of my faith and while I know that there have been bigger things that God’s done well (apparently), my relationship with God through faith in the Christ has been my link into the mystery of it all..

I just don’t know where to go with it now, but thanks for listening

 

 

 

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A big moment yesterday Newtown station works

An SMS I sent yesterday

“After waiting for 17 years for accessibility I’m waiting to board my first train to NEWTOWN train station”.

Yes after what seems a long slow build and a lot of behind the scenes work the station is operational.

I was quite emotional. I tried to engage the station staff at central station in the joy which wasn’t that apparent, but to no avail.

I weeped and giggled from central. I sheepishly explained to the sole occupant of the level bit of the carriage that I had waited a long time. She said they had done a good job. I noticed that very soon she will be pushing a pram and using the very lifts that I am lording.

I have done two single trips arriving at Newtown station. I have shared the lift with 3 mums with prams, 2 small children, one young man who is on crutches for 10 weeks and an older gentleman with walking sticks.

Clearly well needed

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Friday fashion 2: the second question

I know I’ve been a bit slack here. Lots going on and not. Sorry. J

 

What it is about achieving a professional effect which causes problems for you (such as the stockings/tights issue we talked about)?

  • Clothes that are easy to get on and manage eg pull up from a sitting position, tops that allow enough shoulder movement to operate the electric wheelchair are often not the right size for my body. So in the right size clothes I risk looking less dressed after going to the bathroom at lunch than I did before.The clothes that work best practically are bigger which means they don’t sit as well. If they are the right size they tend to get caught in the wrong places. Knee length skirts ride up when you sit, but the alternative length is a less professional cut and looks dowdy as do elastic waisted slacks. It’s a balancing act and a greater game of compromise than for the average bear.
  • Centre back zips are great for the shape of the clothes and for keeping things in place but rotten to get on by myself, Part of the 10% we talked about. (we talked on the phone call about the fact that in most cases I feel like I can do 90% of my own dressing/styling, but that the 10% i can’t do myself is pivotal to the rest of the process). 
  • Jewellery is another example. The stuff that looks better on me tends to be smaller and posts with backs rather than hook in earrings. I also only have only good use of one hand so this falls into the 10%.
  • I wear a bra because it improves the way clothes sit but being one-handed this falls into the “sleep in it after you get help with a shower the night before category”

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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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What Dave said he needed to say

He said best. Thank you Dave.

 

No more needs to be said. Today at least.

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