Tuesday, 10 August 2010

Body image and disability article on the DiVine site

I finished the body image article that I mentioned on my blog a couple of months back. It's been published on DiVine and you can read it here.

Love the skin you're in

I am really pleased with how it turned out - it was interesting to write and research it, and an issue close to my heart.

Thanks to all who helped me by providing responses to my email interview.

And thanks for reading.

Saturday, 31 July 2010

I did a forward roll to prove I could do one. And I did!

Yesterday I did a forward roll (somersault) on the floor at work in front of my colleagues.

It was to prove that I could do one. Because my Mum was once a gymnast and now a coach. And somehow it should be in my genes to do gymnastics too. (Note - a forward roll is the only gymnastic move I can do.)

I had a rather tight pencil skirt on, so the challenge was to do it gracefully. No, the challenge was to do it at all.

I got down on the floor, took a deep breath, put my head on the floor and then felt a bit nauseous. I wondered whether it was a good idea. I had not done a forward roll for about 15 years. Maybe more. I used to do them all the time when I was a kid.

The forward roll was successful. It was graceful but not without pain. My neck and shoulders hurt. I am not as agile as I was aged 13. I wondered if in the warmer weather, when I resume body balance, it will be easier to do a forward roll?

I was so pleased I could do a forward roll - and so were my colleagues - they clapped and cheered me on.

Even this morning, my upper body is still sore from this one forward roll. Maybe it's the countless frangelicos and moscatos and champagnes and red wines of last night, though? Nah. Probably not.

The forward roll got me thinking - I often do things to prove my worth to the world. Not things I don't want to do, but things that I am good at, to prove that I am good at them. And a lot of the time I'm constantly proving I'm more than a red face. Because there have been people I've met who just can't get past that issue.

I currently have about six projects on the go. Full time work, freelance writing, TV, volunteer work at ChIPS, my masters thesis and belly dancing. Somewhere in there is socialising, shopping and seeing bands, maintaining this blog, and the everyday stuff like cooking (love it) and cleaning (hate it). Plus keeping my health (pretty good most of the time).

I take on a lot. And I think it's to prove myself. That I can do these things. That I am good at them. That I am successful and articulate and committed. I need to clarify though, I do enjoy these things I do, and wouldn't take them on if I didn't enjoy them. Doing them gives me a sense of purpose and fulfillment too.

For me, a distinction at university is never good enough. I've written about this before. Even though I say I aim to achieve 70%, and I work full time and do so many other things, as above, I know I want more. And when I got 78% last semester, it wasn't good enough for me. I wanted more. And then wondered whether if I achieved 88%, would that be good enough?

I wonder whether if I didn't have a chronic illness if I'd be as eager to prove myself. Probably not. I'm sure I'd be a high achiever, but I think I'd feel a sense of permission to be lazier.

There have been many times where people I have met have expected less of me because of my illness.

I have been spoken to loudly and slowly: 'So... What... Do... You... Do...?' As though because I am red I can't understand them, or hear them.

I have been underestimated by strangers: 'It's so good someone like you is working and not locked away somewhere.' Because they may have put me in the same category as the disabled people who were institutionalised. Or they didn't expect me to have the capability to work in a department store, or anywhere else. Or they didn't expect me to be able to brave the public. Or all three.

I have been underestimated by people I went to school with: 'So you're doing your Masters? Wow. I only thought you were at TAFE.' Not that there's anything wrong with TAFE - I have considered doing some short courses, but yes, I have the ability, perseverance and the intelligence to study at a post graduate level.

And sometimes, they've asked others to speak on my behalf: 'What's wrong with her face?' Because maybe they thought even though I was just talking to my friend/parent a second ago, my illness means I don't have the ability to speak to the public.

I guess these assumptions made about me have ensured I strive higher than even anyone I know expects me to. To prove to the people I don't know that I am not just a red face.

It's strange because even though I am always being myself, and I know those I work with and am friends with and who love me know my worth.

But the sense of self success and the need to prove myself to others is always so prevalent.

Maybe I'm doing a metaphorical forward roll every day. To prove that I can do. To prove that I'm more than how I look. And to break down the assumptions people make about me and others with chronic illnesses and disabilities.

I think I need to ease off on the actual forward rolls though!

(Originally posted at Tune into Radio Carly)

Sunday, 4 July 2010

Message to parents

If you have seven children and they're all peering out of a car window at a person who looks different, do something about it.

Especially if they've got their faces smooshed against the window, poking their tongues out and shouting taunts.

A bit like this...

...but five more monkeys, like stacks on, all trying to get a look at that person who looks different.

Don't just sit there oblivious to it all.

Discipline them. If you believe in giving them a light smack, do so. If you discipline them in other ways, like taking their toy away from them, do that.

Teach them at an early age about diversity and acceptance.

Teach them about illness and disability. And about compassion.

Teach them that someone who looks different to them and that doesn't fit the beautiful mould isn't something to be ridiculed.

And don't just say that they're young children and don't understand their actions.

Thank you.

This blog entry was originally published at Tune into Radio Carly.

Thursday, 24 June 2010

Taxi driver abuse

I recently went on a trip to Sydney for work.

The thing that brought down the experience of the trip was catching a taxi on Monday night after an amazing dinner and a few wines. I've been debating writing about this experience, because it is just another shitty thing I've encountered. And then I wonder whether people will think that I am overreacting about things, or worse, making things up. I know I shouldn't worry what others think, but I don't want to make peoples' eyes glaze over by incessant talking about my skin and the shitty situations I encounter.

My colleagues saw me off to the taxi rank at about 9:30 pm. It was dark, and I was in an unknown suburb of Sydney. I'm confident catching public transport and taxis alone - I do it all the time in Melbourne. I always try to be aware and alert when alone at night.

I knocked on the window of the first taxi in the queue. His door was locked. He wound down the window. He was a man of African descent, with poor English. I asked him to take me to my hotel.

Instead of saying yes or no, he said 'what happened to your face?' (And, no, his tone of voice didn't indicate he was concerned for me, he was not welcoming to take me either.)

Tired from being up at 4:10 am, really sore, and not feeling at ease with this driver, I didn't answer, and walked to the next taxi in the queue. I didn't want to ride with this driver. I figured, if he put me that offside on first encounter, and I'm so tired, then things might get tense, or much worse, on the taxi ride.

The second driver didn't speak much English either. He asked me why I didn't go with the first driver. I told him I didn't feel comfortable with the first driver. I don't think he understood what I said.

He flashed his lights at the first driver, told me he's not taking me either.

Then he got out of his taxi, went to the window of the first driver and demanded to know why he wouldn't take me.

There was some sort of argument, I heard the first driver say he wanted to know why I looked the way I did.

The second driver came back to his taxi, pointed his finger to the first driver's taxi and told me I have to go with him.

I said 'no, I don't feel safe' and walked off. Unfortunately I didn't get either driver's taxi licence or car registration numbers.

I felt shaken, a little frightened and disoriented at that stage. My colleagues were no longer at the cafe we were at. I called my manager and she and my colleagues came back for me, and to see me off to a new taxi. I thank them greatly for this.

This next taxi driver was very nice. I told him what had happened earlier, and he told me I was a beautiful, smart girl and not to worry what others think about my appearance, even though it's difficult. It was a positive trip, at least.

As I've said before, sometimes I just want to get on with my day instead of being questioned about my appearance. It's such a hassle.

First published at Tune into Radio Carly

Wednesday, 2 June 2010

The cost of having a chronic illness - where's the support for the employed?

I was born with my chronic illness - a skin condition called ichythosis form erythroderma. It means scaly red skin. It's not just a bit of eczema on the back of the knee. It will never go away. And nor will the cost of it.

When I was at the disability conference last week, I asked a question to Graeme Innes AO (Australian Discrimination Commissioner) and Dr Rhonda Galbally AO (Chair of the National People with Disabilities and Carer Council) in response to their reference to the National Disability Insurance Scheme.

My question was:

'I'm all for enabling people with disabilities and chronic illnesses to enter to workforce. But what about financial support for people like me who are already in the workforce? Although I earn a good wage and am independent, the cost of having this chronic illness does not disappear just because I am employed'.

My question was heard.

I didn't say this at the conference, but I don't want a fortnightly pension. I don't need one at this time. All I ask for is a health care card, and perhaps a medical support plan to ease the financial burden.

There is the PBS Safety Net where you are entitled to prescriptions at a reduced rate after you spend over $1200 but I never reach it because I only ever get the essentials for survival.

I get medications that are both covered by the PBS and over the counter. I need creams and tablets such as antibiotics and painkillers (prescribed/PBS) on a daily basis, plus special shampoos, bath/shower creams and lotions, eyedrops, ventolin, antihisthamines and painkillers (not prescribed/non PBS). I estimate I spend $200 - $300 a month on maintaining my health. And that doesn't even include things like cough mixture or other medications when I have a general illness!

I admit, maybe if I limited my spending to only rent, utilities, bills and food, plus savings, and used the money I spend on going out, bands and clothes for medications and treatment, I may be able to afford everything that's prescribed or recommended to me. But I need some quality of life.

I know there are people out there spending far more than me on medication and treatments. I want to fight for them too.

The proposed National Disability Insurance Scheme is currently being discussed in the media and in community groups across Australia. I don't know if there will be a solution to my question with my scheme. I have looked at the key features () of the scheme and found the following:


- Principal beneficiaries would be people with profound and severe disabilities (in Australia, approximately 700,000 people) who need assistance with daily living tasks (self care, communication and mobility) while people with more moderate disabilities could also be eligible for some assistance based on their lesser needs.
- People with permanent disabilities acquired before age 65 would be eligible for life, without reference to cause and treated equally based on needs.
- People born with a disability or who acquire a permanent disability through an accident, injury or as a result of a medical condition, including mental illness, would be eligible.
- No fault; the provision of support and care for people with disabilities would be separated from legal action for negligence/culpable behaviour.

Benefits for people with disabilities

- Care, support, therapy, access (although not income support or housing), based on functional impairment.
- Person-centred services and support based on the needs and choices of each person with a disability and their family.
- Case management to facilitate independence, maximise potential and plan transitions over the life course, when required.
- Early intervention a top priority.
- Aids, equipment and home modification needs met on a timely basis.
Training, development and access to work to build self-esteem and reduce long term costs.
- New competitive market place for service provision likely to develop, helping to drive efficiency and innovation.

From these points, I cannot determine whether eligibility is means tested. And for my situation, is a chronic illness the same as a disability, thus covered by these key features?

I appreciate that many of those key points do not relate to my current situation. I am mobile (most of the time, apart from when I have severe infection). I do not need ongoing care (I do need some detailed care when I have severe infection to the point of hospitalisation). I do not need home modification. I don't know what my health will be like when I age. I can't predict the time that my skin condition may not allow me to work.

Right now I find it difficult to get into the public hospital dental system. I cannot get health insurance because of my life-long illness. So I can't really afford dental surgery if the need arises.

While my dermatologists can connect me with branches of specialists for me, I do not have a regular social worker of therapist should I need one. My dermatologists are looking into a health care plan for me, to connect me to a range of allied health specialists, but I suspect I won't be eligible because I work full time.

To receive financial assistance from Centrelink if you have a disability, you need to meet the following eligibility conditions:

- aged 16 or over and under age pension age[1] at the time of claiming, and
- not able to work for 15 hours or more per week at or above the relevant minimum wage or be reskilled for such work for at least the next 2 years because of your illness, injury or disability, or
- be working under the Supported Wage System (SWS)[2], or
permanently blind.

I understand that our taxes need to spread across the needy, and that there are people who simply cannot work because of illnesses and disabilities. There is compensation and support for workplace and traffic related illness and disabilities. People with lifestyle diseases get financial assistance. But why can't there be some sort of assistance for people like me who have a chronic illness and choose to, want to, and enjoy work? I didn't choose to have my illness. I did nothing to cause it. But I do choose to work. Work gives me a great quality of life.

I truly hope the National Disability Insurance Scheme can assist people in my situation who earn a good wage but need financial support to purchase medications and medical treatment.

I put the question out there again.

I'm all for enabling people with disabilities and chronic illnesses to enter to workforce. But what about financial support for people like me who are already in the workforce? Although I earn a good wage and am independent, the cost of having this chronic illness does not disappear just because I am employed.

I hate asking this question. I feel like because I have a chronic illness, and able to work, I should be content.

I can hear people think 'you've got a job, you earn a wage, why are you asking for more?'

I feel like I am asking too much.

Please can you spread the word about this blog entry. Tweet about it. Facebook it. Email it to the media. To Australian Parliament if you want. I'm not asking for more blog followers, but I am asking you, my blog followers to show some support to this issue that I feel so strongly about. You doing so may help someone out.

This was originally posted on Tune into Radio Carly.