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