On the Platform with Melanie Hawkes

Platform stories showcases and represents women with disabilities who live real, diverse, and everyday lives, achieving so many things… so much more than the often-lower expectations placed upon them by a society that sees disability as “less than”.
Society until very recently, has most often portrayed people with disabilities as living their lives struggling every day, and as being inspirational for achieving everyday tasks.  It is this ableism, this lack of expectation and understanding that perpetuates these outdated stereotypes and myths.
It is through our actions; we create and shape our reality – and our latest storyteller on the Platform does just that.  Melanie does not accept or fulfill the stereotype of disability expectation.
She has taken action, expanded her horizons across cultures and proves that people with disabilities, when provided with supports to do so, are capable of fulfilling their passions and achieving so much more.

Mel shares her story here with us on the Platform.

Tell us about yourself
I am 41, live in Riverton, WA with my retired assistance dog Upton.

What has been your journey of disability?
I got a virus called Transverse Myelitis (which is a rare neurological disorder caused by inflammation of the spinal cord) when I was 23 months old. It is quite rare, and we don’t know what caused it. I only know of three other people with it, and we are all affected differently. I got my first power wheelchair when I was 3!

“Stand up for yourself. If you don’t or can’t, find someone who can. Don’t give up the fight to be right.”

What do you do with yourself?
I work 2 days a week for the WA Department of Fire and Emergency Services. I do video editing, captioning and issue public information during emergencies. I got my job in 2004 through my Disability Employment Service, and learnt all my skills on the job as I had never done any video editing before!

I also work for Web Key IT, testing apps and websites with my assistive technology on my phone. DFES sent me on a course run by WKIT to learn more about making websites and documents accessible, and they invited me to join their team of usability analysts!   I wouldn’t be able to do this job if I didn’t have my disability.

I am also on several committees, including the Perth Festival’s Access and Inclusion Advisory Committee (a paid position), Physical Disability Australia board as an Associate Director for WA, Advisory Committee of Tenants for Housing Choices WA (who manage my property), and do various consultation work for the NDIS and Consumer and Community Involvement Program.

In my free time I like to write and do arts and crafts. I make art from bottle tops and other recycled materials. And look after Upton!

What would you say is your greatest strength?
I have determination. Tell me I can’t do something and I will prove you wrong!

Are there things about you that people misunderstand because of your disability?
I guess people underestimate the amount of time I take to get ready; and I hate when I am freezing but people walk in with short sleeves on! I take ages to warm up (and no, a hot shower doesn’t warm me up) as I don’t move around to get warm.

“Everyone’s needs are different. Ask me what I need help with, don’t assume you know.”

Which three words would you use to describe yourself?
Creative, Adventurous, and Busy!

 

What is one thing, experience or person you have had that completely changed your life?
Studying Japanese. A physio I had in primary school suggested I be an interpreter, as I loved to talk! So I did Italian for a term through PEAC, but didn’t like it much. The next term I switched to Japanese and loved it. So then I did it at high school for 5 years then got into Murdoch University and studied Japanese for another 4 years, including 10 months at Himeji Dokkyo University in Japan in 1999. I finally qualified as an interpreter in 2008 and did it casually for three years. Since coming home from Japan I have lived out of home with visiting support, something I never thought I would do!

“I have lived out of home with visiting support, something I never thought I would do!”

Studying Japanese , has given me a love of everything Japanese. I do bonsai and ikebana, I love Japanese food, watch Japanese movies and have lots of Japanese friends. My year on exchange also left me with a love of travel, and since then I’ve travelled to Singapore, New Zealand and every capital city in Australia except Darwin. (One day soon, hopefully! )

Is there a  single piece (or more!) of technology that makes your life easier? Why?
It would have to be my power wheelchair because I would be stuck in bed without it. But there are so many others. I’m known as Gadget Girl!  I love my Assistive Technology and even have names for my different items, including Pete the pet food or treat dispenser that I control with my phone through Bluetooth and Jill- who is a wifi camera that also dispenses dog treats! Due to my disability, I have low lung capacity and weak muscles so I find it hard to cough. I have a cough assist machine named Cam. It has a tube that I put in my mouth (you can also attach a face mask) and it blows air into my lungs, then sucks it out of me again. It sounds awful, but feels good. You can read more about my AT on the Physical Disability Australia website.


Mel with Upton and her AT device “Tom”

What’s something about you that surprises people?
That I can speak Japanese, and that I taught my dog to do many tasks to help me, including filling the washing machine and taking off my hat, shoes and socks!

For what are you most grateful today?
My good support workers. Without them, I would still be in bed!

   

Knowing what you know now, what advice would you give your 18-year-old self?
Don’t get a dog: they can be hard work.  Upton has fear anxiety, so he reacts to lots of different things. That’s why he failed as a service dog. He was retired after only 6 months with me which means he’s been retired 5.5 years now. He stays home when I go out, I kept him, however his behaviour makes him hard to live with some days, but I’d struggle without his assistance.
I think it’s important to make people aware that assistance dogs aren’t perfect and people need to know what they’re getting in to before getting one.

Is there something that you would like people to know about you or about people with disability that they might not know?
Everyone’s needs are different. Ask me what I need help with, don’t assume you know.

Best advice that you would like to share with other women with disabilities?
Stand up for yourself. If you don’t or can’t, find someone who can. Don’t give up the fight to be right.

Do you have a way for people to connect or follow you that you would like me to share? (insta handle etc)
Yes, at  meljhawkes on Facebook   or read my blogpost https://www.pda.org.au/2021/04/27/my-assistive-technology/

6 Comments

  1. Owen O`Donnell

    Hi Mel this is OWEN from our ACT group thank you for sharing your story you are an inspiration to the world your enthusiasm to achieve is overwhelming i can see the love that the support workers have for you smiling and enjoying the help that they give you and i hope to see you at our next ACT meeting,
    Cheers Owen

  2. Joan Glengarry

    Thank you for sharing your amazing story of finding your multi level facets. You are truly inspirational. I so enjoy your contributions to our connection reminding me to listen, seek understanding and show compassion. We can not know the path others have endured until willing to open our hearts and acknowledge the depth of souls hidden in “warped” structure.
    I truly value all those who assist in my growth. Bless you Melanie for your strength to be fully you.

  3. Pauline Culshaw

    Such an inspiring woman & a pleasure to meet. So enjoy conversing with you at our Meetings. Great ideas woman. Keep up the fantastic work you do.

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