Get back to work....or....just get a job!

So word on the streets, and around, and about.....well, everywhere really is that our esteemed government is bringing in hefty changes to our welfare system so that they can reduce the national deficit.

That's the way I understand it anyway. I'm not going to pretend I'm au fait with all things political but I do know that the Australian Welfare System is under heavy scrutiny and the fallout is not going to be pretty. From where I stand it looks as though the rich are pretty much going to stay rich and the poor, the battlers and the disabled are going to have to be the people who suck it in and bear the brunt of these cuts.

It's most certainly not going to be in your favour if you're young, unemployed, seeking work, disabled or elderly that's for sure.

The two areas that raises concern for my loved ones are the reviews of the Disability Support Pension and Newstart Allowance. Every time I hear these mentioned in the news these days my ears prick up and my heart drops. None of the news I hear is positive and the demonising language that is being used in the media to describe recipients of DSP in particular is extremely hurtful.

The President of People With Disabilities, Mr Craig Wallace stated:

“Headlines like this one talking about people with disabilities as rorters, bludgers, slackers, slouchers, that kind of language that we have seen over the past couple of months, reduces and trashes and destroys the brand of people with disabilities to employers. I say right here, we are not rorters, we are not slackers,” (Source)

I couldn't agree with him more.

In short though, from what I understand from the review into welfare, the government simply wants people with a disability to get out there and get a job. If you have some capacity to work, then you should be working. Plain and simple, right?

Wrong! It's all well and good to talk about getting people on DSP out into the workplace...but is there going to be an accompanying change in attitude from businesses in regards to actually employing people with disabilities? There are people with disabilities out there who want to work and try long and hard to find suitable employment to no avail. They actively comply with their Participation Agreement with Centrelink with no rewards.

This issue is particularly close to me because recently, someone I love finally got word via their Job Support Agency that a large, national company had agreed to employ them for fifteen hours a week according to the stipulations Centrelink had set. This person was so eager and happy to finally gain employment. They worked hard and stated that they enjoyed the work they were given. Most of all, they were thrilled to be out there in the community, earning a living, interacting with fellow employees and the general public. They came home fulfilled and satisfied.

Then the Budget happened.....and along with it came the cuts to support funding for companies who employed people with disabilities. Two days later, the young person was told that the large, national company could no longer employ them due to the cessation of the employment support funding. To say that the young person was devastated would be an understatement. They said to me that they would even work for FREE if the company would let them - just to be DOING something, contributing to something bigger than themselves, being amongst people, was enough.

Don't tell me that people on DSP are rorters, bludgers, slackers and slouchers. How many politicians in Canberra would say that they'd be happy to work for free just so that they could feel as though they were contributing something to the community?

I have never known an Australian government so out of touch with reality, so uncaring of it's people.

So we sit and wait to see what is to become of us...and while we wait the chasm between the rich and the poor stretches wider and wider. I worry about the future of our country and it's people. I really do.

Independence Machine

Yesterday the kids and I returned from a nine day trip to Los Angeles, California. Anaheim to be exact. Anaheim, as everyone knows, means Disneyland and that was our reason for going. Chloe determined on her 23rd birthday in 2013 that she wanted to celebrate her 24th Birthday in the Happiest Place on Earth so she set about planning for it to happen. She researched everything and found accessible accommodation close to the Park, the flights she needed to take, how to take a motorised wheelchair on a plane, how to get from LAX to the motel. She even researched tipping etiquette. All of us saved for a year to make it happen.

Her sister Sarah had already gone over to the USA with her wheelchair and had no problems charging it with the power point adaptors provided. A friend of hers who was familiar with electronics had warned her that she would need some kind of a transformer to convert the power to the appropriate amps for the chargers, however when she got there she found that the transformer wasn't needed and the chair charged without any issue.

So, when it came time for us to trip over to California this time we thought everything would be the same and we left the transformer in the shed at home...

The thought that there may be a problem never entered our heads. On getting to our hotel we were alarmed to discover that the adaptors we had only delivered 10 amps. The chargers needed 24 amps. The chairs weren't charging. 

The one thing we hadn't planned for was happening. The girls had no means of getting around. Unless we hired push wheelchairs we were going to be confined to the motel for eight days.

Luckily the ever-helpful and cheery Andrew from the Menage Hotel in Anaheim saved the day and hired some chairs for us. Bright and early the next morning he delivered them to our door. Sure they were costing us $20 per chair per day but at least we had transportation!

It was the best option we had. No, the girls didn't have their independence and had to rely on Tim and myself to push them everywhere they needed to be, but we were out and about, and that was the main thing. We still had fun...just a different kind of fun than we had planned for.

But see that little white box on the bottom left hand corner of the picture? Oh how we longed for that little white box sitting uselessly in the shed hundreds of thousands of kilometres away!

I've never understood the mindset of those who view wheelchairs as a more "inferior" way of getting around - as though by having one and using one is a second rate option to walking. Do people not realise that not having one when you need one is actually the factor that "makes" you disabled? In their chairs the girls can do anything, go anywhere, be totally independent. They can plan their own days, catch up with friends, sightsee, explore, make their own purchases and take their own sweet time doing so. They can separate from a group and say, "I'll meet you *here* at *this* time." They can access everything they need to and more.

The week without their chairs meant that none of the above happened - for ALL of us. Don't get me wrong, we had the most amazing, wonderful, adventurous holiday and we'd do it all again in a heartbeat, but there were more considerations to make. None of us could be totally free and independent if we wanted to be. The girls had to consider the energy levels and stamina of the two people who were assisting them. The two people assisting them had to consider the needs and wants of the girls, ensuring that they too got the most out of their holiday experience. Sometimes communicating all this was difficult....but we all tried as best we could. Each of us were acutely aware of the feelings, needs and wants of each other. We relaxed, but not as much as we planned.

We're home now and the electric wheelchairs are on charge; sucking up as many amps as they need. We learned a valuable lesson these holidays - plan as best you can but expect the totally unexpected. Have a back up plan. 

But whatever happens, suck the most fun as you can out of every single moment!

Joining the Flock

Over the past two weeks I have had the wonderful experience of being involved with Weave Movement Theatre's latest production - Flock. My colleague and friend, Simone, asked if I'd like a go at being Assistant Stage Manager and Front of House Coordinator during their season in the Melbourne Fringe Festival. Eager to expand my horizons I happily said "YES!" Assistant Stage Manager and FOH Coordinator (along with Volunteer Coordinator) was going to look good on a resume which made another reason for saying yes.

Little did I know how much this gig was going to mean to me.

Isn't that the way life goes sometimes? You agree to something because you want to help out;  to contribute to something bigger than yourself and to learn a new skill so that one day you might pick up more work in that particular field and you end up being a part of something that touches you in such a profound way that you know your life will never be the same. 

I didn't know what to expect. I'd never done stage management before so I didn't know exactly what was expected of me but I soon learned that stage management is everything I love doing - fetching, carrying, helping, setting up, prompting cast members, making sure things are in the right place at the right time and generally being a go-for and go-getter.

The biggest bonus though was being introduced to the loveliest bunch of people you could ever hope to meet. They are enthusiastic, they are creative, they think outside the box. They communicate beauty in ways I have never seen before. I am captured and mesmerised by each performance.

I love being further educated about disability just by being there.

I love having my misconceptions confronted, my ideas challenged. 

My favorite scene of the production is one of the last. It's a movement piece - the most beautiful and moving piece I have witnessed in a long time. So expressive and gentle, yet powerful. The two women move me to tears each time I see it. It confronts every notion I had about dance and motion, beauty and expression. 

The more I am involved with Weave the more I want to be involved, the more I want to explore my creative side. If I continue to be involved behind the scenes then I will be happy, but I would be thrilled to be able to explore my creative side and join the ensemble of performers. I have always loved to dance and move but have long despaired that my physicality is not one that people want to see on stage other than in roles that are more suited for comedy  as a token imp or elf or fantasy creature. Weave opens up an opportunity to explore movement that involves beauty, sensuality and actually celebrating that one has a body.

This weekend Flock is showing at the Brunswick Mechanics Institute.

Details about the show and how to purchase tickets can be found HERE. 

I hope to see you there!

Life Goes On

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When I first started this blog I wanted it to be a chronicle of what it was like living as a person with dwarfism. I wanted to get my voice out there so that the general public would be educated and that if a parent with a newborn diagnosed with a dwarfing condition stumbled across this little place in cyberspace they would read about someone who was living a normal life, that this diagnosis is not a terrible thing and their beloved baby had every hope of having a great life.

But I've found I don't really talk about my dwarfism much. I just talk about daily life, my journey towards mental and physical wellness, the thoughts I think, the observations I make, my hopes and wishes and dreams.

It was then that I realised that this IS life with dwarfism. It's just life...and hopefully it's showing everyone who comes here that life for me, for us, is not different, or strange, or terrible, or magical. We don't live in little houses and sleep in little beds (believe me, I had a person in my life who actually thought that!). We're not relegated to jobs that entail making people laugh by making fools of ourselves (although I know of people with dwarfism who make a living of doing just that....but then again, I know average statured people who do the same thing too!). My life is actually pretty ordinary every day, but I choose to see the magical in the ordinary - the precious moments that make life worth living for everyone that transcends whatever human condition we may have been blessed with.

So, I'm handing this over to you, the reader. What do YOU want to know about? Are there questions you have for me? And my personal philosophy is that there is NO SUCH THING AS A SILLY QUESTION, so ask away!

Literal vs Figurative

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Have you ever thought about how much of the way we listen, speak and understand comes from implied language?

No?

I didn't either, until I started working with someone on the Autism Spectrum. (AS) I work with Akash, who identifies as "an Aspie" or "someone with autism". He is very high functioning - I'd call him a brainiac. He'll talk your ear off, he knows how to get your computer working better, stronger and faster (like the Six Million Dollar Man), he knows about film and photography, he writes music and lyrics....basically he's super smart!

We have struck up a friendship through a project Akash dragged me into. And I do mean dragged. He just came to me one day and said, "Come with me! I need you to interview *this person* for our new e-magazine!"  and Take 5 with Leisa was born! Akash just throws me into these interviews. I know nothing about the person, nothing about what they do, up until I interviewed Samuel Johnson from Love Your Sister two weeks ago.

I learn a lot from Akash, possibly because he is so vocal and up front about his disability. If he doesn't understand something he will say so....and because of that I have realised how much of our spoken language also includes unspoken inferences.

For example, one of our colleagues walked past Akash's office yesterday with a plate of food and announced, "I have food!"

Now those of us who have no problems processing language and the inferred meaning behind it know that the meaning of the sentence, "I have food!" is, "I have food left over from the catering for the meeting we just had. You are all welcome to share it if you would like!"

But Akash doesn't know that. He furrowed his brow and said to me, "So....she has a plate of food? What does that mean? I can see she has a plate of food!" So I had to explain to him the implied meaning behind the sentence. Although he understood that the food was now there to share he thought that announcing that, "I have a plate of food!" was silly and akin to just randomly announcing, "I am wearing shoes!"

So I've been thinking a lot about that since yesterday and realised that most of us understand what each other is talking about because we understand inference and implication whereas someone on the AS might not. It's like speaking a different language to them....or it is to Akash anyway.

Now I know to be very literal with Akash and to say what I mean. When we are filming another episode of Take 5 I can't say to him, "Darn it Akash! I didn't put my face on today!" He won't understand it. I need to say, "Akash, I am really concerned because I haven't got my make up on and I wish I did because the lights make me look like a ghost. I need to wear makeup!"

But then again....that confuses him too.....because he can't understand the concept of makeup. He thinks that's silly and a waste of time too.

And honestly, he possibly has a point. Why do we feel the need to cover our faces?

Akash opens up a whole new way of thinking I'd never considered before.

Being inspirational/encouraging/heroic - take your pick.

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I find living on the fringes of the disabled community confusing.

There seems to be so many rules to navigate, political correctness to adhere to. Some are fine with "this" wording, some are not. Some believe it's good to see the person and not the disability, some seem to want their disability to be seen right out there loud and proud. Fundraising for the disabled can be seen as good, but on the other hand some see it as condescending and a message that the disabled need to be helped to get by. Like me as the person I am but for God's sake, don't call me inspirational because that's condescending...apparently.

See what I mean?  If I'm confused and I'm kind of "in the club" I imagine that the "non-disabled" would be walking around on eggshells constantly. I imagine the internal questions would run as follows:

"Do I look at them or not?"
"Is it okay to ask them about their disability or not?"
"Do I offer help?"
"Is it okay to tell them that they inspire me or will that offend?"

Apparently, to some, it does offend and I am at a loss to work out why.

When someone tells me that I inspire them I am touched and humbled. Humbled because, on the surface, I don't feel as though I am doing anything great to warrant such esteem. I carry on a regular life, work a job, pay my bills and taxes, love my kids, get annoyed with my kids, do my shopping, drive my car. I work on my physical fitness, I try and better myself through reading and introspective soul searching. Nothing more than any human being would do on a regular basis.

But maybe these kind people see what I choose not to - and note that I said CHOOSE not to, for to dwell too much on these things would possibly send me down to a place I don't want to go. I'll admit that. Our specialist once told me that one child with a difference/disability/medical problem in a family puts an extraordinary amount of pressure on a parent and within the family. Multiply that by four and you have super-extraordinary  pressure. I never wanted to look at that. I never wanted to admit that, for fear that I would give my amazing children the message that it was all too much - and it was NEVER too much because my whole attitude has been that I must be strong enough to be their parent because otherwise this challenge would not have been appointed to me.

But it is a super-extraordinary amount of pressure, and work to be done, and hurdles to get over...and we do. Together. And maybe that's what people see and are inspired by it. And we do it despite and in spite of what gets thrown our way. Yes there are times where getting out of the car and entering a crowded shopping mall is a challenge. But what's the alternative? Think about it for a minute.... What's the alternative? Sit at home and watch DVD's all day? Hide away and not get out and about? Online shopping?

Stuff that.

So we face the challenge and we get out there and participate in life. I lift motorized scooters into the boot of my car, I carry people across sand so they can enjoy a day at the beach, we hang heavy shopping bags on the back of wheelchairs, we put up with rude people on occasion......actually more than on occasion. We put ourselves out there because life is ours and it is there to be enjoyed - every single wonderful second of it.

And while we're putting ourselves out there we are also "inspiring" people - and that's a good thing. A really good thing. "You inspire me" is not a dirty phrase in my book. If we have encouraged others to get out there and live your life just by the fact that we get out there among "you all" and live our ordinary lives then I am happy. Deliriously so.

So, contrary to the political correctness that seems so important with "my mob", I'm not going to jump down your throat and accuse you of being "so condescending". I'll probably thank you....and go away and feel inspired by you, knowing that the world really is made up of mostly nice people who just let us get out there and be ordinary.

The Public Face

Do you have a Public Face?

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I feel the constant need to put on my Public Face. All. The. Time. This is the face that smiles and says, "Yes, I'm fine. Sure I've seen each one of my four children through extensive, life-changing surgeries. Sure I wrestle every day with access issues. Sure I try and ignore people being insenstive and downright rude and ignorant every day. But I'M OK.

I find I am very aware that I am on display simply by stepping out my front door every day. I attract attention. I attract attention because I look different. I know this. I understand this. I know that if I wasn't short statured and I had never encountered difference I would possibly be curious too. With the upbringing I had I would like to think I would be politely curious. I hope I would. I guess I'll never know because I am the one who looks different so when I encounter another person with a difference I've never seen before I treat them exactly the way I'd like to be treated - with respect. I note their difference and then move on, letting them be just another face in the crowd just as I wish to be.

So, being a person living with a difference I learned from a very young age to put on the Public Face. The face that appears not to notice that people are looking, and staring, and giggling, and digging their mates in the ribs to make sure they notice me too, and getting out their mobile phones to take a picture or make a video to upload on YouTube or their Facebook or just to share with their friends. But I do notice...and I pretend it doesn't matter but it does. I like my privacy. I can make a joke with myself that they're only taking photos and videos because I am so damn hot or so damn famous that they can't believe they've seen me. It doesn't work though