disability

#thisgirlcan

A friend of mine recently posted this youtube clip.

I jiggle therefore I am.

Feeling like a fox,

I kick balls,

Deal with it.

Damn right I look hot.

 

I was stoked. He does such great work (for his take on ethical fashion check out ishivest). He’s a great guy, working on community engagement and participatory democracy in Chicago. He’s also pretty good looking. It made me happy that someone of such calibre was posting a clip about women’s body image. It’s not just any clip mind you; it’s great.

This Girl Can is a women’s health campaign from the UK and I can’t think of a healthier message. It taps into one of the issues described in Emma Watson’s He for She speech at the UN: women and girls opting out of sport because they don’t want to look muscly, are embarrassed about sweat, or the other things that go with being active. But it’s not just that. It’s not about being thin, being good, or winning. It’s about moving and relishing what that does to your body.

I’ve never really felt the fear of sweat or muscle that I hear those women talk about. I’ve never been thin, but I’ve always liked working up a sweat. I jiggle. I sweat. When I’m rocking on the dance floor I feel like a fox. I love to kick a soccer ball; I do it with attitude, even if I’m not very good at it. I enjoy it. Damn right I look hot, I am hot; that’s kind of the point isn’t it, to get the heart pumping?

I’ve never been sporty, but I’ve been a relatively active person most of my life. I loved swimming from an early age: it was my thing, the sport I did as a kid. I didn’t learn to ride a bike till late in primary school, but when I bought my own, I loved to ride it to school. I was a Girl Guide and loved to hike. I loved orienteering. I joined the Army, and served for many years. I used to love running. I tried combatting my fear of heights by taking up rock climbing in the Grampians. I travelled to Africa and climbed a live volcano; that was hard work.

I climbed an active volcano and camped the night on the rim of the crater.

I climbed an active volcano and camped the night on the rim of the crater.

But what I really love about the This Girl Can video is the diversity of subjects. There are women of colour, women with disabilities, skinny women, bigger women, young women, old women. The campaign isn’t about a goal, or a competition, it’s just about moving what you have as best you can. For me, that’s a very empowering message.

A couple of years ago, I had a minor surgery and got a major infection which left me with a chronic, disabling illness. Now, I get auditory overload. I get cognitive fatigue, and physical fatigue. When I fatigue, I have trouble walking, talking and even thinking.

I can’t be around loud noises. So there’s no more dancing in clubs for me. Oh how I miss dancing. I can’t be in a place where lots of people are talking at once, so even backyard parties are a problem. Soccer is out of the question. If I go swimming, I need to be careful that I have enough energy left to climb the three flights of stairs to my apartment. I live alone so I need to leave myself enough energy to be safe and self sufficient. Yes, sex is a problem.

It’s been hard not to resent my body; not to be angry at being trapped in such an unhelpful place. It’s scary. It’s disempowering. It’s upsetting. It’s frustrating.

Sometimes people say, ‘you should keep positive.’ But as our beloved Stella Young used to say “no amount of smiling at a flight of stairs has ever made it turn into a ramp.”

 

Part of maintaining my quality of life and good mental health is re-imagining a positive future for myself, within the confines of my current condition. It’s not healthy to go on falsely expecting everything to go back to the way it was before, if it won’t. No amount of smiling at the Hip Hop club will make me able to go in and dance the night away; or even have one dance without collapsing in the corner, a spastic bundle unable to control my limbs. So I am on a journey; learning to love my body for what this girl, and this body, can do.

There are a whole range of bonus This Girl Can clips. There’s one about a busy mum, one about losing inhibitions. But I really like the one called Grace Vs Pace. Grace rides a bike. She doesn’t wear lycra and she doesn’t go fast, but she goes and I think that’s great.

 

These days, I’m managing my health well enough that I can ride my bike from home to my office at uni. I ride my bike, and I do yoga.  I can’t afford lessons or anything; I have an app on my phone. I just have a little town bike, with three gears. I dawdle my way down the bike path, letting the men in lycra zoom past me. I love it. I love the physical act of cycling, I love the quiet bike path, I love that I’m doing something active, and I love that I don’t need to take the bus. When I get to uni, I open my window onto the oak filled courtyard and do a simple yoga routine. It calms me, it gives me the time to be mindful of my body, and to work it gently, kindly, beneficially.

There is no inspiration porn here, but someone trying to figure out what #thisgirlcan and I love that I’m able to do something good for, and with, my body.

Letter to Stella Young

Today I am grieving the loss of a great Australian. Many of us are. It was with great sadness that I heard of the unexpected death of Stella Young. In a tribute piece published today, Stella’s friend and one of my favourite writers, Clementine Ford said with perfect eloquence “she spearheaded a conversation in this country about the dignity and autonomy of disabled people, whom she always maintained were truly disadvantaged not by their bodies or conditions but by a society which insisted on marginalising them.”

I kind of knew Stella in high school. I spent some time at Stawell Secondary College while she was there. I was a few years behind Stella, but I saw her around, and chatted to her a few times. I was mostly too scared to say much, I’d gone through some tough times and was pretty reserved during that time of my life. But she stood out from the crowd, with a personality that demanded to be noticed. We had friends in common. I was very glad to see her rise in prominence for her opinion, comedy and advocacy. I think she was Stawell’s greatest daughter. In 2012, when I first got sick, I wanted to tell her what her advocacy meant to me. So I wrote her a letter. Today, I find myself wanting to share that letter with you all.

 

19 May 2012

Dear Stella,

I have always been in favour of a National Disability Insurance Scheme. But recently, I have gained a new insight into its importance.

As a child, I always had people around me with some kind of disability. The family I grew up with included a young boy with Down syndrome, my primary school was fully integrated and my Girl Guide unit included young people with disabilities. In primary school, I grew up with friends who were deaf, had learning disabilities, and one who was in a wheel chair. I knew and loved them for who they were, and (within the bounds of my young but curious understanding) always tried to be supportive and understanding of their needs and aspirations. When I moved away from Melbourne in my mid teens, I spent six months at school in country Victoria. In Stawell, along with the rest of the community, I was struck by your determination, positivity and productivity in any endeavour you undertook. I have been joyed to see you clearly articulate issues around disability rights and the NDIS in the national media.

Recently, I began suffering neurological symptoms that have been very frightening. The first of these came on very suddenly and left me totally immobile. I was struggling to maintain consciousness and communication was very difficult. Admitted to hospital, I was glad to see my immobility begin to leave, but weakness in my legs remained. This has continued to occur to me intermittently. It is not only a terrifying experience, to become so vulnerable, but I also struggled a great deal with my own dignity. I remember struggling with a bed pan two times in one night, till the nurses said they would put a catheter in me. I was so angry and frustrated, thinking I would soon improve, and be able to use the toilet, if I only I were given the chance. Eventually, I got the hang of it. But found the whole experience terribly undignified, being left alone with urine all over my butt cheeks. I recognise and understand the amount of work a nurse has to do, and mean to pass no judgement there, but mean to merely articulate the importance of supporting those less able in the most dignified manner possible. On one occasion I was able to inform the nurse that I was losing the ability to move and was then left totally alone for three hours with no one to even check if I had choked on my tongue, let alone offer a simple reassurance of another’s company. I was once told to simply walk down the hallway to the nurses station. On another occasion, I was told to swallow my pills, despite the fact that I wasn’t able to move. I remember being stranded in the toilet, with nothing but the smell of my own faeces for 20 minutes awaiting help to get up, flush, and return to my bed. Or having a nurse call a wardsman to help me to the toilet, despite the fact that I needed help pulling my underpants down.

Put simply, while I have always understood the truly basic notion of the dignity of people with a disability, and have supported dignified constructive and tailored support for people with disabilities, I have a new found appreciation. I want to thank you for your longstanding contributions to advocacy and support for young people and people with disabilities. I look forward to those moments when such work pays off.

Thank you kindly.

Sincerely

Susan