Would you speak up?

A friend linked to this video on Facebook. I watched it, and it got me thinking.

I thought about my own experiences - both with questions, comments, bullying and stares I receive, and whether I have spoken up for someone else on the receiving end of nastiness.

It's interesting because I believe in speaking up against this behavior. Abusive people need to be told that their behaviour and insults towards people with disabilities is not acceptable.

But, from experience, I often find that when friends and family defend me in similar situations, it can be almost as outspoken as those who are giving me a hard time. Then when a stranger speaks up for me when I'm alone, it's a relief, and so very rare. 

As I wrote on Ramp Up, 'There are those who gather a group of friends to point, laugh at and ridicule the 'girl who got stupidly sunburnt'. These ones usually receive a mouthful from my well-intentioned but defensive friends, making me more self-conscious than the stares themselves.'

I remember my first boyfriend almost started a fight with someone who stared at me, and my second boyfriend was so intent on setting the record straight that he was 'proud to have a pink girlfriend' that I ended up walking ahead of him while he gave the commenter a whatfor!

So many times though, I am left to fend for myself when abuse occurs. People usually do not step up and defend.

In 2003 I was told I am ugly and should be dead by a woman with spider tattoos on her face, on the 86 tram to Collingwood. She carried a bottle of alcohol and may have been a prostitute. She ranted at me for two minutes, it was awful. And scary. No one spoke up. And a similar thing happened with a group of five dwarfs in 2008 - pretty much the same words, but near a supermarket. Passers by didn't stop to tell them their abuse was wrong. I was left yelling at them like a madwoman. And then I cried in a heap in the office of my real estate agent (they didn't know what to do), got really drunk on $8 wine and called the boy I loved and cried like a girl (he didn't know what to do either).

When the guy on the train defended me against four boys taking photos of me on their phones, it made me feel really proud. There are some kindhearted, strong people out there.

I wondered whether I had seen the situations that have happened to me whether I'd speak up? Probably, given my experiences, but also, probably not if my safety is compromised. 

I was trying to think about when I've stood up against this kind of behaviour, and I can't pin point it. Of course I am highly protective of my friends with disabilities - I see stares, hear comments and am appalled, but I am also mindful of causing a scene, for my friends' sakes. One thing I'm considerate of is letting the person receiving abuse speak for themselves, if they're in a state to. I hate people asking friends and family what's wrong with me, assuming I can't speak.

There was a time recently when a friend made a derogatory comment about disabled people, and I told them not to talk like that. When asked why, I said it's rude, inappropriate and I have many friends with disabilities and this sort of attitude sickens me. I think my friend was shocked at my warranted lecture.

This video came by at an appropriate time. On Monday after work, an intellectually disabled girl got on my train and kept repeating that she wanted a seat. Her Mum wouldn't let her move to a seat, but no one offered her a seat. She was nearly in tears. School kids were sniggering. I was half a carriage away from her and really wanted to call out 'can someone give that girl a seat?'. But I didn't speak up. And I felt like I should have. I left the train feeling guilty. I'm sorry, and next time I will speak up. 


Would you speak up?

New ABC Ramp Up article written by me!!

So I have been away without bare essentials (mobile phone and internet access) for three days. While I was away, my second ABC Ramp Up article was published. Hurrah! The picture above shows my article on the front page. And the one below is a preview.

Go read it. You'll laugh. You might cry. And you'll think twice about commenting on someone's appearance.

Read Did You Just Say That on ABC Ramp Up.

I still can't believe I'm writing for The ABC!

While you're at it, check out Stella Young's editorial.

Enough about me, let's talk about YOU for a minute: Just the Messenger

This is a guest blog from my lovely friend Pauline Vetuna, who writes at Just the Messenger. 

I met Pauline through writing for DiVine. Here are her articles.  She also writes for the ABC's Ramp Up. She is a brilliant writer, I am proud to call her my colleague in writing. And in a short time, has become a brilliant friend to me.

Here is her guest blog:

Thank you, sweet irony. 

Pauline Vetuna 

My disability is so ironic.

 

In some parts of my body that I can move, the sensation is dulled. Some areas where I have sensation, don’t move so well. When I was walking, and seemingly ‘able-bodied’, I was miserable, frustrated, with mild damage to my spinal cord in the “incomplete quadriplegic” category. Now in a wheelchair, after suffering a second spinal cord injury in the “incomplete paraplegic” category, I am, oddly enough, the happiest I have ever been since aged six (now that was a stellar year). 

This ironic state of affairs has augmented for me one of the biggest lessons of my life thus far: that happiness, and freedom, starts in your head. It’s all about your state of mind.  

Back in my walking days I suffered from serious depression. Not clinical, but serious. It was initially triggered by medication, but sustained through repeated trauma. My mind went to some very, very dark places. I’ve heard it said about people who attempt to take their own lives, that “if they only knew how much they were loved, they wouldn’t have done that”. But my experience of depression has taught me that it cuts you off from EVERYTHING. Although, on some level, I knew there were people around me who cared a great deal about me, I couldn’t feel any of it. What I felt instead was a constant homesickness, combined with an impenetrable grief and complete mental isolation. Every day felt like a funeral. My thought processes cut me off and alienated me from LOVE. And that is, to me, the very definition of hell. 

And I hated my body. HATED it. I recall once having an argument with an ex-boyfriend, about a compliment he gave about me being tall and lean that I, wrapped up in self-loathing, took to be facetious. I resented my illness profoundly, and found the amount of energy it took to keep up with my able-bodied friends, who were clueless about my physical needs, was both physically and emotionally taxing. Rather than call attention to my vulnerability though, and risk being seen as sick or, worse, disabled (a word that absolutely terrified me), I pretended I was fine. Normal.  

I was a closeted sick/disabled person. 

But my goodness, things have changed. For four years now I have been comfortably and conspicuously sailing around in my cute, hot orange Quickie wheelchair, and my mental outlook and, indeed, the people in my universe, are completely different. I feel comfortable talking about my disability, communicate my needs unapologetically, and know that all the difficulties I’ve experienced have made me a more empathic human being. Everyday, despite physical pain or whatever else is going on, beneath it all lays a peaceful, uncomplicated sense of contentment.  

So what brought about the change?

 

Somewhere between losing all hope and making peace with myself and my disability, something that had been my biggest fear since the age of 12 (the year I was diagnosed with the illness that has lead to this ironic predicament), I developed a superpower: the ability to be present, to let go, and to appreciate EVERYTHING.  I discovered on my own what studies have shown to be true: that practicing seeing and giving thanks for the things in your life today, big and, especially, small, that make it better and give you joy, is conducive to good emotional health and a full, abundant experience of life.  

So, in the spirit of good emotional health, abundant life and all that jazz, I’d like to take a moment here to give props to some people (and inanimate objects) that make my universe wonderful to live in: 

Thank you to my mother, who cared for a disturbed teenager through the toughest years of her life, and still cooks meals for this 26-year-old princess because the kitchen isn’t modified to accommodate my disability. 

Thank you to my father, who goes to work everyday but looks forward, longingly, to the day he doesn’t have to anymore. Thanks to you, I know what integrity at work looks like. Hope I can live up to that model some day. 

Thank you to the vending machine that gave me $6 change for a $5 note two days ago. I was in a great mood after that! 

Thank you to the man who picked off a flower from the bouquet he was carrying in an elevator at a train station on the weekend and gave it to me. 

Thank you to all the friends, family and acquaintances who make me LAUGH, bring me JOY, and encourage me to keep pursuing my goals, my way, against overwhelming (but, I now know, not insurmountable) odds … even though the interim poverty is tough to live with. 

Thank you to my body, that has survived illness, damage, intense surgeries, extreme pain, sleep deprivation, and all manner of abuse I have subjected it to over a decade. And still, it goes on. You champion. You shaky, chronically painful, bane-of-my-existence champion! 

And thank you, Carly Findlay, for allowing me to write a guest blog for you. And for embodying in so many ways what it means to have a healthy, beautiful outlook on life. 

Read more of Pauline's writing at Just the Messenger.

If you want to write a guest blog for Tune into Radio Carly, let me know!

Dinner with Stella, and more food and clothes too. What's new?

Firstly a huge thank you for all of your kind words and support in response to my previous entry about the teens on the train taking photos of me. I was saddened to read that similar things have happened to some of you, but am glad we can empathise with each other. Your messages on this blog, Facebook and Twitter mean a lot, and make me feel so valued. Thank you!

A funny thing happened on the way to dinner tonight. Well, it's another one of those 'sunburn' moments, but funny in light of what happened last night.

I crossed the road near Federation Square in Melbourne while the man was red. No, he was not sunburnt. (Hahah that wasn't the funny bit.)

Suddenly there was a rush of oncoming traffic coming from around the corner. I quickly ran back across the road to avoid getting hit by a mass of cars.

When I reached the median section of the road, a lady looked at me and said 'what happened to you?'

'Nothing', I replied.

She 'mmm-ed' and then I added 'well, I was just nearly hit by a lot of cars'.

She wasn't impressed with my joking way of not explaining why I am red.

She looked at me disapprovingly then took a step away from me and told me to be careful!

Stella Young, editor of Ramp Up and former host of No Limits, thought this was hilarious! So did I.

I had dinner with Stella tonight at Chocolate Budda in Fed Square.

This is what we ate:

Grilled eggplant skewers (my favourite of the night)

Gyoza dumplings

Inside out pumpkin and tempura nori rolls

We also had tempura vegetables which I failed to photograph as Stella and I were talking enough to generate energy to power a small country. I am surprised we actually had time to eat given our level of conversation. I am so glad we became friends - we have a lot in common - not just disability but our love of music, fashion and writing. She is awesome. And great hair and make up.

I ordered a drink - lychee liquer with lemonade - delicious. The bottle was so tiny, Stella called it 'Stella sized'. See.

I loved the bottle so much I kept it. I couldn't keep Stella though but I will see her again.

This is what I wore to work and dinner today. A colleague asked me whether I feel pressure to wear something cool to work every day. I said no, but photographing outfits for my blog does make me become more creative.

Today I epitomise chainstore chic. Or chainstore Carly. I am wearing a cardi by Cotton On, skirt by Valley Girl, leggings by Kmart, shoes by Diana Ferrari (I have three pairs of the same style in different colours - I love them! All $15 from the outlet!), necklace by Wiyomu at Etsy, headband by Witchery and top by Target. Carrying an Olga Berg purse.

This was my main meal yesterday. Breakfast at 2.00 pm.

Pancakes filled with blueberries and topped with icecream, strawberries and maple syrup. It was sort of delicious if it the pancakes didn't taste like scrambled eggs. Looks much better in the picture.

I also ate a slice of citrus tart and had a glass of wine. Some chocolate mousse topped yoghurt by Yalla - my favourite brand of dairy. And that's about it. I'm definitely not weight conscious on a Sunday.

Oh yeah, this is what I wore on Friday. You can't really see the detail of the dress, but it is very pretty - floral and lace, pink and purple. I am such a girl.

Just in case you want to rush off to the shops to mimic my outfit - I was wearing a dress by Temt, top by Sussan, shoes by Diana Ferrari (as above but in a different colour), headband by Mimco and bangle by Diva. I also had stockings on. I never get around in bare legs. Ever.

Happy Tuesday everyone!

ABC online's Ramp Up launch + International Day of People with Disability

It is quite fitting on this International Day of People with Disability that my own chronic illness has somewhat disabled me. I am writing this from under the covers (even if you imagine really hard, it's not a sexy situation I am in). I am sore, finding it hard and very painful to walk, a little bit miserable, and unable to go to work. The chemist gave me a doctor's certificate, and suggested home-based treatments. I am now on a second dose of antibiotics and nauseating pain killers. If I am not better by Sunday I will take myself to the emergency ward for a consult with the dermatologist, to receive IV antibiotics rather than a hospital stay. And I'm concerned that I'll be too unwell to go to my own birthday party tomorrow night. It sucks.

I had a shower at my friend's house this morning. As I mentioned, I never look my best first thing in the morning, so to have kisses blown to me and smiles from her beautiful one year old daughter made me feel good about myself. There's nothing like the unconditional love from a baby to cheer you up when you're feeling your worst.

Something else that's put a smile on my face today, and made me very proud is the launch of the ABC's disability portal, Ramp Up.

Ramp Up is a website dedicated to news, opinion, broadcasts and discussion about disability.

My introductory article has been published.

You can read it here.

My online friend Todd has also written an article which I recommend reading. And check out my real-life friend Pauline's article too.

I've not had a lot to do with International Day of People with Disability until very recently. I never thought it applied to me. But it does, and even if I didn't have a chronic illness, it should apply to me. This day is very important to raise awareness about disabilities and chronic illnesses, and to celebrate ability.

For the past three years I've had greater involvement in International Day of People with Disability. I coordinate events for it in my workplace. I've spoken at some of these events in 2008 and 2009. This week I have coordinated and assisted with two events at work - giving the opportunity to young staff and friends to share their stories about their disabilities. Hearing their stories - some struggles but mostly triumphs - moves me to tears.

In her editorial welcome on Ramp Up, Stella Young writes 'In a lot of ways, International Day still doesn't mean a great deal to me. It's just a day. I'm proud of who I am every day, and I know dozens of other disabled people who feel exactly the same way.'

I feel a bit the same. But this year International Day of People with Disability feels more special for me because I am now a contributor to Ramp Up, in the company of many other talented writers.

I am going to rest up now, under the covers. Read the newspaper and sleep. And hope that my infection heals soon.

The rainy days ain't so bad when you're the king

I am really sore. On my legs. Like hospital sore. I went home from work early, sick. My manager asked if there is anything she could to to help me. 'Stand for me', I suggested. So, so sore. It's thumping and stinging and burning all at once. I've also had to postpone a catch up dinner with a friend tonight so I can have a salt and oil bath and rest up. I want and need to be well for U2 and my birthday party on the weekend.

My shower needs replacing. I may be without a shower for two weeks. It is a medical need that I have a shower at least twice a day. A bath in the morning doesn't cut it. If I don't have a shower there is a risk of infection. Plus I don't wake up looking like you usually see me on this blog and in person.

I literally have to put my face on. I have to wash off the old skin to make way for the new. On a bad day, I wake up looking a like Freddy Kruger. On a good day, I wake up dry, scaly and scrunchy-eyed/faced. I don't let many people see me before my shower in the morning - I have to really love and trust them. So it's imperative I have a shower to start the day. Fortunately I have a very good friend nearby who is kindly letting me use her shower as much as I need to while mine is out of order. I hate to be a burden though. I think the thought of the shower situation is stressing me out and making my skin sore. Ironically, this sore skin on my legs requires a bath.

Glum, glum, glum.

On the upside, and there is always an upside...

The shower and tiles have been pulled out today. It's actually not as bad as I imagined.

I really love the outfit I wore today, despite how sore I am. This humidity is making my hair nicely curled too.

The photo was taken in the chemist when I picked up my cream (Vaseline) and some much needed Panadol. The girls in my chemist always make me laugh no matter how sore I am. There is three kilos of Vaseline in this box. I lather myself in it. It's not as sexy as it sounds. But come hither, boys...

I wrote an article on surviving the party season. It was published on DiVine. You can read it here. I think it's one of my more fun pieces.

I'll be featured on 3CR radio tomorrow talking about dating.

Tomorrow the ABC's Ramp Up website is launched. It will feature one of my articles. To see my writing in print on the ABC will be one of my proudest moments. Like their (previous?) slogan 'it's your ABC', a small part of it is now my ABC.

I got a standing room ticket to the Kings of Leon concert for March 2011 too. Hurrah!

(source)

And Rush is on tonight. These boys will be nice to look at.

(source)

As Kings of Leon sing, 'the rainy days ain't so bad when you're the king'. Today is a rainy day for me, literally (it's been raining sideways in Melbourne!) and metaphorically. But there continues to be good things happening which outshine the bad.