Licensed to advocate for change

Madeleine Sobb wears many hats, and makes them too. While diminutive in stature, her ambitions and passions are lofty indeed!

Licensed to advocate for change

"Last year I met Prince Philip, Duke of Edinburgh. He shook my hand and asked, 'Are you safe in that thing? Do you have a licence to drive it?' He was referring to my wheelchair!" recalls 22-year-old Novocastrian Madeleine Sobb.

 

After completing her Higher School Certificate  at St Francis Xavier's College Hamilton, Madeleine attended TAFE, studying Millinery, Design Fundamentals and Small Business Management.

 

"In 2009, I began a business with three of my classmates through the Renew Newcastle project called Mad Hatter Millinery. We made hats in our workshop and had a retail gallery space for people to share in our passion: browsing, trying on and buying.

 

"Growing up I dreamt of sharing my love of creating handmade things and being able to sell them. Mad Hatter Millinery was an amazing experience and gave me the chance to fulfill that dream."

 

Another long held passion led Madeleine to move to Melbourne in February 2011 to begin her Bachelor of Applied Science in Disability Studies at RMIT University, one of only two in Australia offering undergraduate degrees in disability.

 

"It prepares people to be leaders in the disability sector. Graduates work in the day to day support of people with disabilities or advocacy, case management, policy and supervision.

 

"I had always been an outspoken person with the attitude that people with a disability who are able to speak up for their rights and the rights of others, should do so because there are so many people who can't speak for themselves." 

 

Madeleine has a rare bone growth disorder called Spondlo Metaphyseal Epiphyseal Dysplasia. "In general terms that means that my bones have grown at an extremely slow rate and therefore I am of short stature. I am at my full adult height of 86cm. It also means I have scoliosis of the spine and two dislocated hips. I am an electric wheelchair user most of the time, although I can walk short distances if needed."

 

Madeleine has been a rider for nine years, competing in dressage at state level for the past four years. In 2010 she competed nationally for the first time. "My ultimate goal is to represent Australia at the Paralympic Games in Rio in 2016.

 

"I love the liberating feeling that I am in control. I'm a completely independent person on horseback. I am also three times my usual height!

 

"I love the challenge of dressage and the accuracy that is needed to do well when I compete. I think this enables me to have an outlet for my slight perfectionist tendencies!"

 

Madeleine is combining her study with professional experience in the disability sector, working two days a week for the Youth Disability Advocacy Service co-ordinating a newly established national voice for young Australians with disabilities. "Currently there is no national peak advocacy organisation working to improve the rights of young Australians between 12-25 with disabilities, so we are trying to gain government funding.

 

"This month I'll start a casual position with the City of Yarra Council as a Community Access Appraiser. This involves visiting business owners and working with them to improve access for people with disabilities: telling them what's good, what's not so good and how to fix it.

 

"Melbourne has some of Australia's most active disability rights advocates. Being surrounded by them makes me even more passionate to act on issues I feel strongly about." 

 

Last October, I read on Madeleine's Facebook page that she had been invited to meet the Queen, and I was interested in the protocol issue Madeleine faced.

 

"After much controversy over the fact that Julia Gillard did not curtsy to Her Majesty, Stella Young, my good friend and editor of Ramp Up, the ABC's portal for disability news and opinion, wrote a blog and began a Twitter conversation about how a wheelchair user greets royalty when they are unable to bow or curtsy. Wheelchair users gave suggestions. In the end, the good old handshake was used." 

 

I asked Madeleine to suggest something forAurorareaders to think about or act upon that might improve the lives of people with disabilities.

 

"A common misconception for many who haven't had any experience with disability is that it's a negative experience and that people with disabilities want to be pitied. In fact, we would rather that you have an understanding and offer assistance so that we have the same opportunities you have.

 

"People with disabilities are actually disabled by their environment. If you give us physical support, equipment, accessible buildings and transport, then we are able to have the same opportunities and make positive contributions to society just as any other Australian," Madeleine emphasises.

 

"Currently, there are many Australians with disabilities who do not have their basic needs met on a daily basis: assistance to get out of bed, shower, and other personal care. Until these needs are met, they are not able to participate in education, employment, recreational activities and so on."

 

Madeleine is inspired by others who advocate for the needs and rights of people with disabilities and hopes to be remembered for doing the same. Follow Madeleine on Twitter (@tinymads) or visit her website and blog at www.madeleinesobb.com

 

You might also like www.abc.net.au/rampup Find out about the government's proposed National Disability Insurance Scheme at www.everyaustraliancounts.com.au

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