Jack Oldacres - Netherton's Syndrome

I read this article this morning. It's about a little boy with Netherton's Syndrome (the same variant of ichthyosis I have).

Jack Oldacres is 21 months old and lives in the UK. His parents, Daniel and Julie, are on a mission to educate people about Netherton's Syndrome, to get Jack the recognition he deserves. Isn't Jack beautiful?



It's one of the better news articles I've seen about ichthyosis. I am so pleased of the sensitivity shown in telling Jack's story.

There were two parts of this article that brought tears to my eyes:

Daniel, 32, says: “I want him to walk through town and people to think 'There’s Jack', not 'What’s wrong with that red baby?'”

“We went to Twycross Zoo and a coachload of school kids – teenagers who were old enough to know better – started shouting and pointing.

“They were more interested in Jack than the animals. We were stuck there for 40 minutes and by the end Julie was in floods of tears. It ruined our day.”

And

Daniel admits with a grimace that he is even planning to joke about Jack’s condition to prepare him for other children’s cruel taunts.

“That way he’ll be able to say, my dad says worse than that, and carry on with what he’s doing,” he explains with stoney-faced resolution.

Jack's story resonated with me because of my own experiences.

It saddened me to read of the heartlessness of the teens taunting Jack at the zoo. How's that for cruelty - a little boy at the zoo, doing what he loves, and having a busload of teens take more interest in him than the animals. It would have been heartbreaking for his parents. Jack's Dad is right - they are old enough to know better.

As for toughening Jack up, preparing him for the teasing that may come - it breaks my heart that this is the reality of Jack's life. His parents are doing an amazing job in raising Jack, and I think he's going to grow up robust and compassionate.

But we shouldn't have to prepare for teasing or have our days ruined by stares, taunts and questions. I wish people could just accept diversity.

Jack's parents are doing amazing things in raising awareness about Netherton's Syndrome - they just took part in a charity walk, and held a party to raise funds for research.

I encourage you to read more about Jack and educate people you know about the impacts of making assumptions about others' appearances.

Jack's website
The Mirror article

Wise words from Faux Fuschia

The lovely, stylish blogger Faux Fuschia wrote the following on her blog today, after the sad passing of her grandmother.

'Life can be so difficult. Stay focused-Let's grab what happiness we can. With Both hands. Starting Now.
You've been told.'

I agree. Take every piece of happiness and all the opportunities you can.

Thanks for your assertion, FF. I believe in it strongly.

Music I've been missing - Genevieve Maynard

The thing I like about driving on a long trip is the chance to listen to music. I mean, really listen to it. I have music on so often, but much of the time I don't listen to it with care because I'm doing something else or there's not much time to listen to a whole album. My train trip to and from work is 10 minutes. By the time I've unfolded my headphones and cued the song I want to listen to, I'm one stop away from where I need to be.

Today on my trip back to Melbourne I set my iPod playlist to feature Australian music. I had some Bob Evans, Angus and Julia Stone, The Getaway Plan, Cold Chisel, Clare Bowditch, Darren Hayes, Bertie Blackman and Genevieve Maynard. I set my iPod to shuffle, excited about what song may come next, but as usual, hoping to hear a song I really adored.

Genevieve Maynard's Don't Come Morning came one somewhere before Wangaratta and it was then I knew, hers was the music I've been missing.

I've known Genevieve Maynard's music for about 10 years now. She used to play guitar, sing backing vocals and produce for a band called Stella One Eleven. I first heard Stella One Eleven on the Looking for Alibrandi soundtrack and then saw them play at the Termo Hotel in Albury in 2000. I saw them play live about four times in total.

Genevieve went solo (with a band) and I saw her play a few times in Albury and also in Melbourne at The Rob Roy, The Empress and The Cornish Arms. Sydney people - look out for when she plays next and go and see her - you will not be disappointed. I long for the day she plays in Melbourne again, but I may have to make the trip to Sydney to see her.

She has released five solo (with band) CDs so far, all excellent. Her CDs are hard to come by, but I'm sure if you visit this website, you can arrange to buy them. Her current album is The Hollow Way by Genevieve Maynard and The Tallboys.

You may have heard some of Genevieve's music featured on Neighbours and The Secret Life of Us.

I'm not much good at comparing musicians, but I believe her voice is incomparable to anything you would hear on mainststream radio today. I did read that some say she has the best voice in Australia. Her songs are lush - I love the clarity and depth of her voice. She sings with such warmth and kindness. She has a mix of guitar-heavy and acoustic songs. She sings with such honesty. When I listen to her music, I feel like I am taken away from the world for a while.

The songs I most love are Pillar of Salt, Crash and Burn, Steer Clear, Johnny Lee, Come By, The Albatross and the gorgeous version of The Angels' Am I Ever Gonna See Your Face Again?.

Here is a video clip of The Albatross by Genevieve Maynard and the Tallboys.



I found an interview that I really enjoyed - it's by Tim Dunlop on Crikey.

Genevieve Maynard interview part one
Genevieve Maynard interview part two

I was sad to read the struggles she has in getting her brilliant music heard by a wide audience. To think there is so much awful music infiltrating our world, and Genevieve, with an authentic sound, can't get radio airplay. She sings about this issue in a song called Earthbound, alluding to the quick recognition the Idol contestants receive. I'm really impressed she keeps on making her own music because she loves it. It's a true indication that sometimes you need to follow your heart and do what you love.

She also mentions the power of social networking. It's because of social networking she and I are in contact. Genevieve and I tweet each other on Twitter. She is a funny tweeter. It made my day when she wished me a happy birthday last year!

I was also very excited to be able to purchase her latest album directly from her. It makes me feel good knowing my money is going straight to one of my favourite artists ever.

From earth to table

I had a wonderful weekend away at my parents' house in country NSW. Going home is always a relaxing and nurturing time - Mum's a great cook, and Dad looks after me by seeing to my car (thanks to both!).

This weekend was spent eating great food and drinking wine. That's it really. Friends came over on Saturday night. Mum and I went to a farm on Sunday (stay tuned for a blog entry about that one soon). We watched Mao's Last Dancer on DVD while eating dinner on Sunday night.

It was difficult without Toby. Last time I went home Toby was there, but no Jazz. I kept on expecting to hear the pattering of dog paws on the concrete, and the need step over a dog on the door mat. I miss the dogs so much.

Here is Toby's kennel. As Dad said, no one lives there anymore. It's so sad.


My bedroom has slowly been taken over by Mum's stuff. Parts of my bedroom are just as they were in 1999. Savage Garden Mania.

This is some of my collection of Savage Garden CDs. In December last year, when the bushfires were two km away from my parents' house, Mum asked me what I wanted her to save. I said my Savage Garden CDs.

Here is I Want You. It is very rare. It has been autographed. A penpal of mine gave it to me because her friend didn't want it anymore. It would be worth a lot in fan circles.

This is a clock. My first boyfriend bought it for me for Christmas in 1999. I laugh when I think about him buying it - he was NOT the Savage Garden type.

Here is a picture of Darren Hayes in Vogue magazine. It's laminated, just like most of my other Savage Garden posters.

And this is an introduced species. iPod with Darren Hayes on it.

Here is Baby. She is older than I am. I had her when I was born, and for some reason, she was on my (single) bed when I arrived home. As you can see, she has been repaired. She has many stitches. She has a button with berries on for her nose. I got a replacement Baby because this one got too much of my cream on it.

On Saturday when I arrived, I went out to the garden with Mum to pick some vegies for dinner. The temperature was freezing and I don't go outside much, but this was great!

These are snowpeas.

They are growing up the fence of the dog run. If Jazzy was alive, the snow pea vines would be tangled around her!

This is one part of the garden. We are facing west.

I love the greeny purple here.

Coles Showgrounds Village, I love you, but your vegies lack chlorophyll compared to home growns.


Here is Mum picking vegies.

This is a giant daikon radish. It was THIS big.

This is an eggshell. It has eyes on it, drawn on with texta. Dad said that the eyes scare the butterflies.

This is me with Nigel the ram. I am standing well away from Nigel because he's a bit scary.

This is a pregnant sheep.

See the black sheep with the curly hair? Its name is Mohwak.

Here is Nigel scratching himself on the fence. Sometimes I get so itchy I do this too.

Here are some flowers.


I like the old fashioned style of this woodfire.

Cheese. You know how I feel about cheese.

This is our dinner on Saturday night. I am so pleased that almost all that we ate came from Mum and Dad's garden (the vegies), their paddock (the lamb) or their kitchen aid (the sausage).

I had never stopped to value the goodness of homegrown produce until recently. It tastes so much better when you know where the food is from.

This is fennel salad.

These pork sausages were made by Mum and Dad. No preservatives, just pork mince, herbs and spices. The lamb is Mum and Dad's too.

A delicious lemon tart with King Island cream.

It was a feast!

This is Sunday night's pie. All the vegies on the plate are home grown. And the pie bowls were made locally (near to Albury) by a potter.



Here is Dad rolling the pastry for the spare pie.


I feel really refreshed - thanks Mum and Dad! I truly appreciated seeing the food go from earth to table.

Music I've been missing – Lily Allen + Bob Evans

As I was driving to the shopping mall today, Lily Allen came on the radio. And though she's a singer from recent times, I realised, it's her music I've been missing.

I like a few Lily Allen songs and own both her albums. I first heard her song LDN on Triple J in 2006, but have preferred her more recent songs from It's Not Me It's You. I wouldn't call myself a huge fan of hers, but I admit to enjoying and singing along with her songs on the radio.

I like how she's a bit cheeky and her lyrics are so direct.

I didn't like how radio turned her song Fuck You into circus music.

The song I heard today was The Fear. The Fear is my favourite Lily Allen song. I like how it's a piss take about wanting fame and prioritising beauty and image over worldly issues.



'And that's what makes my life so fucking fantastic' is the line I like the best.

I have admired her style of recent times as well. Especially the lady-like outfits, sans sneakers. I think she's one of my girl crushes. She is stunning, and this new style has certainly brought out the best in her. (Click on images for sources.)


(Source)
I adore the dusky pinks on her.



(Source)



Interestingly, the other Lily Allen song that I rate highly is Not Fair. But covered by one of my all time favourite singer/songwriters Bob Evans (Kevin Mitchell). I do believe it surpasses the original version.



I saw him play this live a few times, and I was lucky enough to get the prompting notes (featuring the Not Fair lyrics) and his set list from the Corner Hotel gig in May 2009.

Like Lily, he injects a bit of cheek into this song. It's got a country twang to it, similar to the country style of Lily's video clip.

I love how Bob Evans sings the original lyrics, and doesn't change the reference from 'him' to 'her' to suit a heterosexual male singer. My year 12 English lessons have taught me he may sing it with some irony. It amuses me that he sings the lyrics so straight, without managing to laugh.

How awesome is this version!

Music I've been missing – Placebo, You Don't Care About Us

One of my favourite bands is Placebo.

I first took note of Placebo when I saw the Taste in Men video clip on Channel [v] in 2000. I was enchanted by how attractive I found Brian Molko, and that he looked more feminine than the woman in the clip.



I received Black Market Music for Christmas that year. I played it a lot. They were a darker band than I was used to. I was intrigued by the band's alleged debaucherous lifestyle - so far removed from my own - sex, drugs and well, rock n roll. I enjoyed the moody, introspective, sometimes repetitive lyrics and Brian Molko's whiny voice. So many people dislike Placebo for these features.

Back then, and sometimes still, I was drawn to effeminate looking men with long hair. Brian Molko was right up my alley.


In January 2001, two friends (including Lucy) and I went to the Big Day Out where Placebo played. The day before the BDO, we met Placebo at the now (sadly) defunct Gaslight Records in Bourke Street Melbourne. We queued in the 35 degree heat for around four hours to meet them. It amused me that the goth-types were wearing long PVC coats and Doc Marten boots in that heat. There was a wedding photoshoot happening across the road at the famous Italian cafe Pellegrini's. I expect the photos have some of the queue for the Placebo signing in the background!

Placebo signed my Slave to the Wage CD. I was very excited. We saw them play at the Big Day Out the next day, right before Powderfinger.

After the Big Day Out I decided to get serious about Placebo. I bought Without You I'm Nothing and their first self-titled CD. I bought all of their back catalogue of singles from Ebay. I loved the artwork on each single.

My favourite song of theirs is You Don't Care About Us.



I love the beat of this song. The speed of it makes me drum my hands. And I'm no way near musical. I also love when the band are forced to swim with the shark in the clip.

Other favourite songs are Soulmates, This Picture, Without You I'm Nothing, Meds, Infra Red, Commercial for Levi and the cover of Robert Palmer's Johnny and Mary. I have their video clip collection and really enjoy the stories each clip tells.

I have seen Placebo play live twice since the Big Day Out in 2001.

The second time I saw them was at The Palace (also defunct) in St Kilda in 2003. My friends and I queued for ages to get a spot near the stage. The crowd was rough, drunk and smoking (cigarettes, not smoking as in 'stylish'). This concert was the scariest concert I've been to. I remember going to the bar to get water between the support band and Placebo, and some girls wouldn't let me back into my spot at the front. My friend picked me up and put me back at the front! There was a lot of moshing. I held on for dear life at the front – sometimes to the barrier, and sometimes to a guy I didn't know – and hoped that I wouldn't faint from heat exhaustion. I had a bottle of water placed vertically down my jacket so my boobs wouldn't get hit. The security guards were worried about me so they gave me a lot of free water, so that was a bonus of being so red! The crowd moved so much that my friends ended up at the back of the venue. I rate it 60 percent terrifying and 40 percent exhilarating.

The other time was at Festival Hall in 2006. So-so. The security were heavy handed, confiscating a guy in our row's camera. We were sitting so far back that I doubt the photos would even be evidence that he saw Placebo. I got really sick after the gig, and I put it down to being in that closely confined venue. They've toured twice since, but I chose not to go because both subsequent times was at Festival Hall and once was mid February.

I am driving 300 km tomorrow and so I think I'll be revisiting the music I've been missing – Placebo.

I like Placebo's old stuff better than their new stuff, though.

Sex and the City 2 movie = yawn, Sex and the City fashions = :)

Last Tuesday night I went to see Sex and the City two with three girlfriends and one guy friend. (I summarised Sex and the City to my guy friend as 'Four ageing/airbrushed women on the prowl, wearing designer clothes except when they're having sex'.)

I have nothing to say about Sex and the City 2 except I think it was the most unnecessary movie ever. The plot was vacuous, the acting wooden, and in many parts it was culturally offensive. I think Sarah Jessica and friends should have stopped on a good thing. At the end of season 6.

The ONLY positives I found in the movie was that Carrie did not wear a beige bra as outerwear (I think she's read this blog and heeded my comments about that issue) and some of the fashions were amazing.

I'd prefer to use this blog entry to concentrate on the Sex and the City (movies 1 and 2) fashions that I love. I adore Carrie's style the most (but I did see something on Charlotte that I'd wear myself, perhaps in purple or grey though). I like how she does classic and timeless with frivolous and whimsical. (Click on pictures for sources.)

I love, love, LOVE this green clashing print ensemble Carrie wears in the SATC1.

And here's an example of Carrie doing timeless with frivolous.


When I saw Carrie in this dress, I wanted it. Apparently it's available to buy, it's by a brand called Halston Heritage.


This is my other favourite style from the SATC2 movie.

This is Sarah Jessica Parker on the red carpet premiere of SATC2 in Tokyo. More pics of this beautiful Vivienne Westwood dress can be found here.

I went to the hairdresser and didn't hate it!

I haven't blogged for ages, I know. So much has been happening, but nothing really worthy of going into detail about. I've gone to work, done volunteer work, been to see Sex and the City 2 (more about that soon), been to dermatology clinic, eaten dumplings and drank wine with friends.

Today is the start of my five day weekend. I went to the doctor to get some forms filled out, had my tyres checked, bought some tracksuit pants, took my car through the carwash. Yep, mundane. But nice to catch up on things I don't get to do on workdays. I patted three guide dog puppies in training. Adorable! They were so cute, and gave me lots of licks. I loved patting them as much as they loved being fussed over. They made me nostalgic over Toby and Jazz, but I felt so much better for stopping to talk to the volunteer puppy walkers and having a pat.

I also got a haircut. My hair has grown surprisingly quickly since my haircut on the March long weekend. As I've mentioned I've struggled finding a great hairdresser. Since that blog entry, I have made contact with a few hairdressers that sound compassionate and understanding about my condition, but honestly, I need to save up to afford to go to them.

Today I went to one in my local shopping mall. I have been there a few times, and they've been fairly satisfactory. But today's experience blew me away. I was there for an hour, and I didn't hate it! It was a relaxing experience where I didn't grit my teeth or have to tell the hairdresser they wouldn't catch ichthyosis. I also enjoyed sitting reading fashion mags and watching Triple J's hottest 100 (2008/2009) on DVD in the salon.

I had the world's nicest hairdresser. She told me how she works in the salon two days a week and the other two days, she visits the elderly to cut their hair and nails and donates her wages to charity. She told me that she recently gave a haircut to a man who hadn't had his hair cut for 40 years. She was the only hairdresser who would cut his matted, tough hair. The man was so happy to have his hair cut, and it was literally a weight off his head.

She was so gentle with cutting my hair and I felt comfortable asking her to recommend some colour highlights (foils that didn't touch my scalp). She did the highlights and they look fantastic. She recommended three shades lighter than my natural colour. My natural colour is a very dark brown, almost black. The highlights are a warm copper. I told this hairdresser I want her to cut my hair from now on. And she's agreed, giving me her card. Yay! I walked out there grinning so much that if I wore lipstick, it would be on my ears.

This is me with my new cut and colour. You can't see the highlights or the fantastic rounded shape, but I hope to take a few more pictures on the weekend that catch my hair glowing.



I am channeling Faux Fuschia and copying Sydney Shop Girl (she has the exact same jacket) in my new Target faux-fur jacklet (it's a bolero style, so I call it a 'jacklet').

Yesterday I wore it the jacklet with a lady-like woolen caramel coloured pencil skirt and a silky black top tucked in, and today I wore it with the same silky top and jeans. So many people have complimented me these past two days I've worn it and they want to pat my jacklet like I want to pat a guide dog puppy.

DiVine article - belly dance

There's a new article that I wrote for DiVine.

You can read it here.

Music I've been missing - Dave Grohl, Tiny Dancer

Like with Nirvana, I am a late-comer to the Foo Fighters. Dave Grohl is the constant there, I know. I think, back in the late 80s and 90s, I was a bit of a goody-two-shoes when it came to music. It's like I didn't want to listen to anything that may have been considered too offensive, or maybe that my parents wouldn't approve of. I played it safe. This meant I overlooked a whole heaps of great bands.

I read a Kurt Cobain biography in 2001. 10 years after Nevermind was released. It was then I decided to listen to some Nirvana. Well, more than just About a Girl. I grew a fascination with all things Kurt and now have all the albums, singles and about five biographies.

I am not sure when I started to like the Foo Fighters. Maybe when The Best of You was released? I regret not being aware of their music at the time Learn to Fly, Next Year, Everlong and Walking After You were released. These are all great songs and I love listening to them now.

I downloaded a heap of Foo Fighters songs about four years ago. This song was one of them.

Dave Grohl covering Elton John' Tiny Dancer. That very specific song is the music I've been missing.



I thought of this song today when I saw a movie trailer to some 3D dance movie. A crummy remix of Tiny Dancer was playing. I like the the Tori Amos and Ben Folds covers of Tiny Dancer, but the Dave Grohl version is by far my favourite. (I actually love a heap of song covers more than the original, and might just tell you about them someday.)

I first heard Tiny Dancer about 30 years too late, when I watched Almost Famous in 2000. I am so glad I heard it, because the lyrics are beautiful.

I love, love, LOVE the movie Almost Famous, and often dreamed of being a music journalist like William Miller. I think it's a movie that every wannabe rockstar or music journalist or 'band-aid' can relate to.

This scene with Stillwater, William Miller and Penny Lane on the bus is amazing.



I love Penny Lane's line 'you are home'. William was in his element singing on that bus with the band he admired and the girl he loved.

Dave Grohl's version takes me back to this wonderful movie. I enjoy the way he recounts the scenes in Almost Famous. He definitely 'recreates that magic' that he speaks of.

I think Dave Grohl's Tiny Dancer is amazing. Sigh.

What song covers do you enjoy, even more than the original?

Music I've been missing - Darren Hayes, Darkness

Lately I've been listening to Darren Hayes. He's the music I've been missing.

Those who know me probably think I ALWAYS listen to Darren Hayes. This is a fallacy. I don't listen to him as much as you think.

It is true that I spent from 1997 - 1999 listening to the Savage Garden debut album on repeat, pretty much all the time I was at home or had my Discman (anti-shock, 20 second delay, $300 thank you - oh the technology!), so much so that sometimes I'd feel seasick. I don't do that now.

In the past month I've listened to Darren a lot on my iPod - mostly his solo stuff. I think what spurred it on was the short film making. My iPod was one of my props. To keep it real, I actually listened to Darren when they filmed me (Darren, if you are reading this, which you probably aren't, the cover of your album on my iPod may or my not be featured in a short film!).

The song I listened to was Darkness.



Darren looks so sad, so restless, yet still so beautiful in this video clip. This clip, and lyrics, shows his vulnerability.

There are so many Savage Garden and Darren Hayes songs that I rate as my favourite songs of all time. Dublin Sky. To the Moon and Back. Mine. The Lover After Me. Santa Monica. Casey. Who Would Have Thought? Walk Away. Like it or Not. So Beautiful.

But there's something about Darkness that means so much to me, enough to yearn for it and write about it here.

Darkness is from The Tension and the Spark, his second solo album. I adore this album. Listening to it when it was released gave me the same feelings as when I first heard Savage Garden's debut.

I saw Darren perform this at his album launch in 2004. Some of the props in the Darkness clip, and on the cover of The Tension and the Spark were on stage at the launch. He kissed and hugged me from the stage. Maybe that's why Darkness means so much to me. Here is a photo I took at the launch.



I remember being at that launch, in the front row, standing in awe for most of the concert. Mouthing the words to his songs. (And it's not often I am silenced at a Darren Hayes concert, or anywhere around him for that matter - he brings out the screamer in me!) I was in absolute awe. I can't articulate how amazed I was.

Darkness has such, well, dark lyrics. Hearing The Tension and the Spark was confronting as it was the first time I heard Darren sing with such direct reference to his emotional state. He has always been an honest and emotional lyricist, but there was something raw about this album. Songs like Unlovable and Setting Sun were so blunt. I loved this album for this reason. It felt like Darren had made a transition with his music.

I like to start my iPod with Darkness. I often walk through the city listening to it, hands in pockets, head down. It's like an escape. It's got a great pace for walking. When I listen to it, I only feel aware of the song.

This song gets into my veins and becomes a part of me in a way that probably seems unbelievable to some.

What is the song that gets into your veins?

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:

Eligibility

- 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 or 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.