20 May Tales of Disability and Success
We speak to three young adults with different disabilities about their challenges, achievements, goals and the role their parents played in shaping them.
Sara, 18 is a university student who lives with Cone dystrophy, a condition that manifests through involuntary and continuous eye movements, which cause her eyes to be out of alignment. Sara’s vision is rated 6/21 meaning she can only see six metres ahead. As a child, she spent time living in Indonesia and that inspired her to become a human rights lawyer. She is also passionate about helping migrants and refugees and does so by teaching them English.
Growing up I really wanted to be a postman or a policewoman because you get to travel on a motorbike. I also wanted to be a vet.
I need to carry a magnifier or my phone to take a photo of a page to enlarge it. Luckily, my students are very supportive. I am most proud and humbled when I’m able to help people.
I can’t imagine where I might be now if my parents had not been so supportive and pushed me to do my best. Two of my siblings have a similar condition and so my mum has always been busy driving us around to appointments. My mum is truly an amazing woman. Parents, never believe your children are not able to do something.
Teach them how to be independent but not to fear asking for help.
To anybody who has this condition, you may find it difficult to do certain things because of your vision, but difficult does not mean impossible! Believe it or not, you are able to do as much as anyone. Try and surround yourself with supportive friends at school who know of your eye condition and embrace it just as much as you do. Also, don’t forget to take your sunnies everywhere!
Stephanie, 22 is a Corporate Support Officer who has been diagnosed with an intellectual disability. She attended a high school that offered classes designed to teach her life skills. She is passionate about her dog and her work.
I was born with an intellectual disability. Basically, this means that often I do not process more complicated information such as tricky maths-type things and difficult problem-solving things. I have been told, however, that I have very good reading and writing skills.
My parents gave me the opportunity to go to a great school. I am really proud that I got to complete my Life Skills HSC Course at Danebank Anglican School For Girls. I am also proud of my achievement at work last year when I was awarded Employee Of The Month.
My parents also give me support and direction to help me achieve my goals. They teach me to tackle things bit by bit and to try to be patient. They have always told me to do the best I can do at whatever task I am doing.
My advice to parents would be looking for the positive qualities in your child and build on those good qualities. When you have learning difficulties, sometimes it can be very frustrating and patience is a really important thing for parents to remember.
To children with the same condition, work hard, have a positive attitude and always give your best. Keep trying and don’t give up.
Since we spoke to Marlena, 26 in our August 2008 issue, she has become a small business owner, freelance journalist, author and public speaker. She has Cerebral Palsy Athetosis meaning she is non-verbal and unable to walk. She is a self-titled average person with bigger than average dreams who has travelled to 34 countries and is passionate about music.
When I was a kid, my mother embraced my dreams and despite what might have seemed impossible, she knew I was going to be something. She allowed me to be a regular kid in regular schooling.
My childhood was fairly typical. Behind the scenes, she ensured I was part of my school. I like writing and music is my life, so music journalism was an obvious career choice for me. I’ve interviewed some amazing people such as the Dalai Lama, Robbie Williams, Ed Sheeran and Andrea Bocelli.
Being non-verbal, I had a few speed bumps at school and uni.
Without being too negative, there are some people who will have the perception that I have an intellectual disability because of my physical one. High school was tough but university was a lot easier as I had a team of supporters. It took a little longer to complete my degree but we got there. Graduating was a relief as it wasn’t easy at times.
I would tell parents of children with similar conditions, tough times do not last but tough people do. Embrace the successes no matter how insignificant, and don’t compare your child to others. You are the best professional in your child’s life. Your best shot at a ‘good life’ is for your kids to be known by many. My best supports and opportunities come from my friendships, not people that are paid to be in my life.
Marlena’s top three wheelchair-friendly travelling tips
While I would love to ‘wing’ it, sometimes it’s not possible. For tours, I touch base with the company personally. I don’t leave this up to travel agents as they do not know my specific needs.
2. Get a doctor’s certificate for keeping your wheelchair with you for as long as possible
This is VERY important when transferring airplanes as many will try to make you sit in their chairs. When I’ve checked my chair in at the gate, it will often get damaged. The less time they have with your chair, the better the chance it won’t get damaged. Have a specific doctor’s certificate stating you must remain in your chair at boarding and at the door when landing will ensure the wheelchair is placed in its own compartment, minimising the risk of damage.
3. Accept things may not be like they are at home
In Singapore, I took an hour-long taxi ride in the middle of nowhere to fix my chair. I got to know my taxi driver’s brother and share a meal with him. In Thailand, we strapped my manual chair to a tuk-tuk and drove the wrong way up one-way streets. In Malaysia, I’m the first in the world with CP to base jump (421m off the KL Tower). Crazy? I was more fearful of my friend pushing my chair down an eight-lane highway so he could sight-see.
Image by: Ian Schneider