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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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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A card carrying bone fide

Yippee I think! I’m officially still a disabled person again as far as an airline is concerned. The wheelchair or the fact that they have loaded it or me before is apparently not enough evidence. I need to have the right “card” telling them and me that yes I am in fact disabled. All the proof I need that I was neither imagining nor dreaming this life long pain arrived in the pobox today!! ;) next time I express any pride on having been a bureaucrat bop me one.

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Doing the limbo

It has being very much a limbo time for me. December was a hard month. January is looking brighter; but I am waiting for some dots to connect.

I’m waiting for a space with a new specialist. Looks like I’ll be waiting till May, which kind of means that I can’t really start the rebuilding project that I committed to before Christmas.

A home care service has started; personal care and house work. It’s interesting having my time managed by somebody else to the extent that it has happened. I think they have the impression that because I don’t work I don’t really have a life. I hope these are just teething problems.

2 stick figures doing exercises

After watching previous seasons of The Biggest Loser over the last couple of weeks I’ve been thinking more about my body and fitness. I wasn’t really given a lot of information about or options as a child and teenager about what to expect from my body or even a clear sense of fitness options beyond standing frames. I wasn’t involved in sport (even wheelchair sports). This is no one’s fault, but I do feel like I’m missing out on getting the most out of my body in terms of the strength that it has and weight loss options. Yes I do have a belly! Fitness is also a good distraction and stress management tool.

So I did a bit of digging and found this. I am ashamed to admit that I don’t even remember being told what sort of cerebral palsy I have, so I guess I need to start there. I could make a guess but given I’m going back to see the GP on Friday I’ll ask.

For example, I’ve realised as I written this using voice recognition software again, how much of a tactile person I really am. I’m impressed with how quickly I can get things “down on paper”, I do miss typing. So I think exercise will be good for my head as much as anything else. It might also help me reconnect with my form and stop feeling like a head on a stick.

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five 2.0

Ok so a few days ago I promised that I’d give you my top five things I want to be different for people with disability in 5 years time. There are of course more than 5, but here’s my five.

  • I want the assumption that I (or anyone) needs a carer with them to stop. I may or may not have a carer, but it is amazing how may people especially from non-disability focused organisations (like airlines, it seems) assume that I must. If I don’t have a carer with me at the point where you see me, and you don’t know me, then lets assume for argument’s sake that I don’t have one or need one. In fact if I look like I know what I’m doing with a particular situation, lets treat me like I do. It’s quite hurtful as a grown woman who has lived with this level of difference my entire life, to have complete strangers look around me for someone, anyone that stands up so that they can breathe a sigh of relief, start talking over my head, and  tell me how lucky I am to have a friend like whoever the standing person is. I’m not taking anything away from those that have either formal or informal carer arrangements, but I don’t. I’m trying to get a best fit here in a world that i at best 90% there in some areas (but it’s often a crucial piece that is missing).
  • I want to really be a person, not a product/program or a problem. With the integration of some provision of accommodation of people with disability in the mainstream activities of life, I’ve noticed an increase in bad references. Variations on”There’s a wheelchair coming to 16″, said  to me is a twice or even three times daily reference. I know its shorthand and  know its said so you can ultimately help, but its rude to ignore the person in these references. My chair didn’t ask for help. I did. There may well be processes that need to be incorporated, but that’s not going to change if you add a personal descriptor into the mix. My wheelchair is not going to drive itself. While I’m here, would it hurt you to realise that I didn’t appear on your radar as a problem as much as a person trying to get on with it in a world that wasn’t built with weakness in mind? Smile.
  • Borrowing from Stella:

In five years time I want to be living in a world where disability doesn’t automatically mean disadvantage. I want to be living in a world where I don’t spend every spare cent of my salary, from a job I work hard at, on maintaining my participation in the world. I’d like to be able to entertain the possibility of being a home owner or going overseas, like my non-disabled peers.

These things are do-able but really a lot harder than they need to be.

  • I want it to really truly be illegal to build a building, or run a business that does not provide access to all of us, and I want that enforced legally and socially. I want it to get more than sympathetic/guilty glances when others can use a service like transport without thinking twice
  • I want to be a proud included member of any number of communities and cultures — not just based on lack.

 

There’s a start…. Thoughts?


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As the dust settles

Yesterday NSW had an election. It was a landslide. that many others will no doubt talk of for many days to come.

Picking up on a post from Mary over at HAT, yes I think she might be right. From what I saw in the literature, there was a higher number of “baseline” accessible venues.

But I never left the house to vote.

I iVoted. At home. On my own laptop. More privately than I did more than once at a polling place.

Designed for people with vision impairment who use screen readers and various other disabilities – they broadened it out to allow travelling folks to feel included too.

The information on the iVote website read:

You can vote before Polling Day using iVote if:

  • your vision is so impaired, or you are otherwise so physically incapacitated or so illiterate, that you are unable to vote without assistance,
  • you are unable to vote without assistance or have difficulty voting at a polling place because you have a disability (within the meaning of the Anti-Discrimination Act 1977),
  • your real place of living is not within 20 kilometres, by the nearest practicable route, of a polling place; or
  • you will not be in New South Wales throughout the hours of polling on polling day

.

The process was painless enough for the fact it was hard to see the bigger Legislative Council in its entirety, and I had to do this sequentially as opposed to top and tailing it as I normally do.

Yes I would do it again. But my question is; is this going to simply be a work around so the various electoral commissions don’t need to improve the distances to and percentages of accessible venues. I hope not. But sadly I fear so

 

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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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Good ol’ Brits

BBC News – One in ten ‘cannot use London Tube or buses’.

The study claimed:

  • Only 10 of London’s 270 Tube stations are completely step-free all the way from street level to train.
  • Just one third of London’s 300 rail stations have step-free access from street to platform.
  • While all London’s buses now have ramps, only half of London’s 17,476 bus stops meet the criteria for full accessibility.

Despite this I still found it easier to use transport in London when I was there 7 years ago, then I did until very recently here. Why with all the claims to history and tradition in the UK was I able to use transport and buildings like I was supposed to be there?a train

Two London transport moments stick in my memory as defining life moments, catching my first cab right out of St Pancras station – with taxi driver almost traumatised — not because he had to pick me up; but rather because he (the very next cab that came along) had picked me up – I cried for joy for 10 pounds worth, and couldn’t tell him why or where I was going! The second moment was when I could even then catch a bus, any bus I wanted before I had caught one as easily in my homeland. I was floored that nobody looked askance.

I accept that the London tube was then and seems now to be all but useless to a be-wheeled being and am glad to see they are doing something about it as it would’ve useful then, but I get the sense they are working from a rights based mentality, not a “she’ll be right”s based one and that will make all the difference, then, now and in the future.

Why do I get a lovely buzz in my tummy (because it’s so rare) when, even now, here in Australia, the right bus is the first bus that comes along and it’s accessible? After a couple of weeks in London all those years ago, I simple assumed it would work and it did!

The other thing that occurs to me as positive is that the Pommes seem willing through their mainstream media to have the discussion about access based on a report, not based on the case of some poor brave headline making person with impairment. Based on a report on the topic, transport, not the minority, disability.

The Governments here in contrast would if I’m not wrong be claiming that 90% was good enough and such a report would never have elicited this response:

Val Shawcross AM, chairwoman of the transport committee, called the situation “simply unacceptable”.

It isn’t perfect but it’s a start. The right start.

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The 2010 Don’t DIS My ABILITY Campaign Has Kicked Off!

The 2010 Don’t DIS My ABILITY Campaign Has Kicked Off!.

Enjoy! I’ll probably write more about this as the month moves forward.

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both disappointing and good

While the announcement itself is good, I’m personally a little bit disappointed that this is the first comment I have heard from Jan Mclucas; our newly minted Federal Parliamentary Secretary for Disabilitiesty and Carers.

a couple of things to notice;
Despite the wording of the United Nations Convention on the Rights of catalogue on People with Disability and the fact that carers are given a title case and personhood in her ministerial title, those with disabilities are not acknowledged as people. Secondly, as soon as she gives her title she then launches into howp roud she used to support all the carers. I really am glad she’s proud of that, but you need to be proud of both parts of the full portfolio and be clear on the different needs of both parts. Because although there are indeed similarities in the needs of carers and people with disabilities, there are differences too.

it really does go to show that once the group gets organised to advocate for itself in a cohesive manner politicians do listen.

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