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The Don’t DIS my ABILITY blog has moved. Please come and check us out at our new home on the Don’t DIS my ABILITY website. New posts and some of the 2013 posts have been relocated there. Older blog posts will remain on this site for the moment.

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Looking back, looking forward

As the year draws to a close, Lucy Reynhout reflects on the highlights of her final year of school and what the future may hold.

By Don’t DIS my ABILITY ambassador Lucy Reynhout

I am leaving school this year and I am not very happy about this. I have been at St Edmund’s School since year 9 and I love going to school. My teacher’s always help me and my friends are there. My best friends at school are Paddy, Dom, Steve, Alex, Catlin, Sarah, Laura and Stephanie. They are all my best friends.

I’ve been to my year 12 formal with the year 12 students. We all went in a Hummer, which took us to the formal and our parents and our school staff came with us. We had some fun and danced and chatted to our friends. I am school captain of my school and I had to go and say grace.

My last work experience was working at Phil McCarroll’s, a place where they sell cars to their customers. I met with the customers and asked if they needed help or if they wanted to talk to one of the staff members. I did some paper shredding, filing and working on the computers at the front desk with the receptionist. Her name was Sandra and she was a very kind and helpful lady to me and I liked working there and meeting new people that come in and out of the office.

Photograph of Lucy at Southern Cross Residential Care

This term, I am working at the Southern Cross nursing home. I love working there with old people. They give me such joy. Once when I worked there, I helped a old lady drink and that made me cry and my heart had tears and butterflies flying around me.

I am having lots of fun in my life at the moment. Like me, my friends are all turning 18 this year. I have been to so many birthday parties with my school friends and we all have such a great time together.

Photograph of Lucy with her friends on a cruise on Sydney Harbour

Last month, I went on a cruise ship for my friend James’ 18th and we went around the Sydney Harbour. My school friends and I had a great time on that boat. We had breakfast on the boat and the food was so good. We had a birthday cake and my friend’s dad made a speech about James. We all listened to that and then we had a group photo of the year 12s on the front of the boat. We all had a great time together and we laughed and talked to our teachers and our friends that were on the boat. It was like a dream being on that boat with my friends!

Photograph of Lucy with her sister Anna

I am looking forward to the future ahead of me. I am going to do transition to work next year and I do not feel happy about doing this transition work program because I am scared about leaving school. I really wish that I could be a teacher but I cannot go to university. I cannot go to that because I have a disability and I am not quite smart enough to do that. My sister Anna goes to ANU in Canberra she is doing a double degree in law and psychology and she is working in a law office. She is a very smart and clever sister to have and I really wish that I could do the same thing as her. I love her very much.

I am really happy to be a ambassador of Don’t DIS my ABILITY and I am proud to have this opportunity and my whole life will change and my school and my family will be very proud of me. My life is very happy and proud and I am very clever to do this. I want to change the world some day.

Photograph of Lucy ReynhoutLucy Reynhout has Soto syndrome and a moderate intellectual impairment. Lucy attends St Edmund’s School in Wahroonga, where she is School Captain. Currently finishing her HSC Lifeskills course and approaching the end of her school years, Lucy looks to the future with excitement. She recently learned to travel independently and relishes the freedom that comes with it. Lucy is currently doing work experience in the finance department of a large automotive business. Like any teenager, Lucy loves music, dancing and hanging out with friends. She also enjoys swimming and golf, having been named last year’s Upper North Shore Sydney Region Golf Athlete of the Year.


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Giving inclusion a sporting chance

In 1983, George Ayoub established the Push and Power Sports Association of NSW, providing the opportunity for people with and without disability to come together for the love of the game.

By Don’t DIS my ABILITY ambassador George Ayoub

Push and Power Sports Association of NSW was founded on the desire of young people with disabilities to play modified rugby league on a weekly basis like mainstream sports. The sport of wheelchair rugby league was developed between two special purpose schools in western Sydney; one from a school in Penrith and the other in Campbelltown. However, the official weekend competition began in Mt Druitt in 1982.

The establishment of such a competition was going to face many barriers that included no money, no accessible transport, no accessible venue and most of all not enough participants with disabilities. The game was designed to have participants in both push and power driven wheelchairs.

This sport was unique in NSW as, for the first time, people with disability were able to participate in an active sport in their electric wheelchairs in combination with those who used push wheelchairs. And not only people with disability were participating: able-bodied individuals were able to participate from a push wheelchair as well, providing truly inclusive community participation totally built on mateship.

The involvement of able-bodied people provided opportunity to resolve transport issues – fortunately, one of the mates had a van that was used to transport wheelchairs, while other mates had vehicles to transport the individuals.

The sports program attracted many people and many others volunteered with the service, including of the old Mt Druitt roller skating rink, where the manager provided storage for old donated wheelchairs that were used by able-bodied participants, and freely donated the venue to play Wheelchair Rugby League.

From its beginnings in 1983 and the passionate drive within the organization known as Western Suburbs Wheelchair Sports Club, it began to reach out and to spread the sport to other areas. With the aid of a disability service provider, the game was spread to other locations and in 1984 the first Sydney round robin tournament was staged with 164 athletes participating representing the locality.

In 1985 the first Sydney metropolitan completion was run over five months, and on a weekly basis over 140 athletes would represent the teams.

The organisation received its first major recognition in 1988 by the former NSW Sports Council for PWD. This organisation is still providing weekly events in 2013 and hopefully beyond.

Yet without the involvement of the community and good mates around Mt Druitt, this sport may never have given the opportunity for people with disability to experience completion and the benefits associated to it.

The highlight was the passion and community coming together in the development of Push & Power, enabling people with disability with varying levels of physical disabilities to participate in customised popular sports.

Today, there are many other sporting groups that provide such sporting opportunities in NSW. Where today many sporting bodies are providing opportunities to specific target groups, Push and Power led the way by focusing on integration and participation.

Photograph of George AyoubGeorge Ayoub is 49 years old, and has been a quadriplegic for 47 of those years. He came from Lebanon with his family in 1967 and attended a special school in Kingswood. George established the Push and Power Sports Association in 1983, an organisation that provides specially modified mainstream support for people with disability. Joining the Physical Disability Council in 1995, George worked as a consultant to help establish Physical Disability Councils in five other states and territories. In 2001, he began work at the Multicultural Disability Advocacy Association of NSW as an advocate and IT support worker. George taught at TAFE for four years, specialising in disability studies. He is passionate about creating socially inclusive communities as well as addressing issues faced by people with disability who are from culturally diverse backgrounds.

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You live and you learn

Education has played an important and ongoing role in the life of Prue McCarthy.

By Don’t DIS my ABILITY ambassador Prue McCarthy

Before moving to Orange in 1982 I attended a school for people with a disability. When my family and myself moved to Orange there was no current school available for people with a physical disability. As a result, I was one of the first people with a physical disability to enter into the mainstream education.

Since then I have received my HSC, TAFE welfare certificates, Bachelor of Social Science (Social Welfare) and am currently undertaking the law degree through UNE, Armidale.

I have been involved in number of local board committees such as the Orange Access Committee, Wangarang Industries and Central Tablelands Housing. As well as sitting on a number of interviewing panels for Orange City Council. I won the Orange Junior Citizen of the year in 1987.

I have my driver’s licence, drive my own car and have purchased my own home, where I care for my 87-year-old grandmother.

I love to travel and have travelled to places such as Europe, the UK, Malaysia, Indonesia and a large part of Australia.

I am currently working for the Cerebral Palsy Alliance, co-ordinating a disability awareness program call ‘Just Like You’. The program allows me to enter into our local schools, and educate young students about what it is like to live with a disability and that people with a disability desire the same things that any other able-bodied person does.

I love that not only does the program educate our children, but it also educates the general community on the issues that are faced by people with disabilities.

I see this proven when I’m in a local supermarket, and I have past student come up to me and say, ‘Hi Prue, you were at our school last week.’ The person they are with will say ‘Who is that, and how do you know her?’ and the ex-student will say ‘Oh, that’s Prue and she has Cerebral Palsy’.

That’s why I love my job.

Photograph of Prue McCarthyPrue McCarthy was born with cerebral palsy and became one of the first people with disability to enter mainstream education within the Orange area by attending Clare Public School. She went on to attend Orange High School, finishing her HSC in 1992, and receiving the School Principal’s Award. In 1999, Prue has a degree in Social Science and is currently undertaking a law degree. Prue has bought her own house, in which she lives and cares for her 87-year-old grandmother. In 1987 she won the Australia Day Young Citizen of the year award. With a zest for travel, Prue has been to the UK, Ireland, Europe, Malaysia, Indonesia as well as exploring a large chunk of Australia. Next year, she plans to take on Africa. Prue works part-time at the Cerebral Palsy Alliance.

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The trip of a lifetime

Jake Briggs charts the journey that led from the Aboriginal Disability Network of NSW to an elopement in Italy – via the United Nations in Geneva.

By Don’t DIS my ABILITY ambassador Jake Briggs

Being the chairman of the Aboriginal Disability Network of NSW (ADN) brings a great feeling of pride and honour to represent on this level with my other colleagues as a collective voice on behalf of indigenous Australians with a disability.

One opportunity that arose through the ADN was a portrait photo session with Belinda Mason, an Australian world renowned photographer to be in her exhibition of indigenous Australians with a disability titled Unfinished Business. This led to me getting a call to represent the exhibition on its first stop in the United Nations in Geneva, Switzerland for a week with my wife Amy, and Luke O’Connell, an ADN representative.

When I told Amy, my fiancée at the time, she was ecstatic with joy and suggested we drop our wedding plans for the 30 November this year and elope overseas. So we planned to extend the trip for a further two weeks, one in Florence, Italy and another in Paris, France.

Before the trip, the whole idea of how we were going to deal with being on a plane for 20-odd hours, using foreign disability hire equipment, the functionality of our hotel rooms, my wheelchair coping in thousand-year-old cities with cobblestones and general access, etc.

We hadn’t really done anything like this in Australia – let alone overseas – since I’ve been in a wheelchair, but it all worked out in the end and I wouldn’t have changed a thing. I could count on one hand the amount of times where access was an issue (generally out on the streets), but don’t get me wrong – it was a bit bumpy here and there and a lot of restaurants in all three countries have outside dining if you can’t get in.

The United Nations was an eye-opener, seeing all the people from different walks of life in there for various reasons. For example, the US Secretary of State John Kerry was there handling the Syria issues.

The exhibition itself was an awesome display with the lit-up 3D lenticular prints and so many powerful stories accompanying the portraits. I ran into Ellen Walker from the International Disability Alliance and we sat down and wrote down a resolution together on indigenous peoples with a disability, which will hopefully that pass the next council.

Florence, Italy was the highlight because I got to marry Amy my partner of 12 years up on Piazzale Michelangelo, overlooking the whole city of Florence. It was magic. The city, food, people, hospitality, architecture and art set the bar. The grotto on the back of our hotel was where Michelangelo studied as a nine-year-old boy in the first school of arts in the world.

Paris, France was amazing – so flat and smooth. We would walk/roll to a destination then all throughout Paris they have bike port stations, so we ride back to the hotel. The look on some people’s faces with me zooming through Paris with my lights on and Amy tailing behind was funny. At most destinations, like the Louvre or Eiffel Tower, I would get shown to the front of the line, which was great, especially to see the Mona Lisa painting where being in a wheelchair you have your own viewing section right up close.

It was a great experience and we are already conjuring up our next trip.

You can see Belinda Mason’s portrait of Jake on the Unfinished Business website.

Photograph of Jake BriggsJake Briggs is a 28-year-old Aboriginal man from the Central Coast. He became a quadriplegic after a diving accident in 2010. Jake is an assistant contracts administrator for Brookfield Multiplex construction company and a qualified carpenter. He says he has a lot of career goals ahead of him in the building industry even if he’s not swinging a hammer anymore. Jake is also the chairman of the Aboriginal Disability Network of NSW, which he is very proud to be a part of, as a Wonnarua/Kamilaroi man. He says it is really rewarding trying to build better outcomes for Aboriginal people with a disability.

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Preparing for life in the fast lane

As he approaches his final years of high school, Liam Luff looks to the future with one eye on a career in business and the other on the athletics track.

By Don’t DIS my ABILITY ambassador Liam Luff

It feels funny sitting down to write this blog. This experience isn’t exactly something I’d ever imagined doing, nor really intended upon, but when offered, I had no reason not to. I’m frankly quite excited about the experience, yet anxious and nervous at the same time.
Having gone through almost 11 years of school already, I’ve had more than enough opportunities to enhance my public speaking and presentation skills, but being honest, I’m not sure I’ve developed too much since year 1. I’m currently wrapping up year 10 now, looking forward to year 11.

Quite a percentage of the other Don’t DIS my ABILITY ambassador have amazing achievements, whether it be personal overcoming, sporting, educational or be taking part in various groups or efforts of equality and fairness for others with a disability, whilst I, myself, can’t really imagine myself with a future quite as remarkable, but it’s one I’m more than excited for.

My main future goal is one that would seemingly bore a lot of people. The future I’ve been working towards for years is primarily a simple job. My perfect career would be in the financial sector, working as an accountant, stock broker, or pretty much anything within the financial region, I’m young enough to not be certain yet, I think. But I’ve always been fascinated and enthralled by the economy and the business sector, whilst admittedly, as of now, I know quite little, I really aspire to know all about it. I really want to learn and know as much as possible about all those kind of things.

For five or six years now, I’ve been playing wheelchair basketball with the Sutherland Sharks under the guidance of Tom Walsh. He helped put the group together in about 2007, and over the years we’ve adopted many new members and everybody’s skills have massively increased, with a large percentage of members from our team being able to play on the NSW Juniors team at one time or another (I played with them on one tournament, but I had to sacrifice further participation as it would become too crowded and hectic with too many sports, school and prior engagements).

About 16 months ago, I tried my hand at track athletics and was evidently, and very fortunately, taken under the wing of Rosemary Little, Angie Ballard and the legendary Louise Sauvage, all three of whom I’ll forever be endlessly thankful. Over the next 10 to 12 months, my times kept becoming faster and faster, reaching pretty good times for my classification (T34).

At the start of this year, I went to the Summer Down Under, and had the luck of rooming with a definite up and comer, Luke Bailey, the multiple Paralympic medal winner, at only 16, Rheed McCracken (who shares my classification of T34) and the charming Kurt Fearnley. I recall when I first arrived at our apartment/room, I came in and put my things away, just to leave to room to find Kurt sitting opposite. I remember my immediate thought was something along the lines of ‘No…. way.’

My mind was metaphorically blown. I felt like at only six months into the whole racing field, there must be something wrong. They wouldn’t put a rookie in the same room as a living legend, would they? Fortunately they did.

The next week was one of the most amazing in my life. Every night watching the tennis or whatever movie was on, talking with Kurt, Rheed and Luke. Admittedly, the first few nights I sat in my room alone reading, out of fear of talking to one of the greatest disabled athletes of all time, and one of the fastest in my classification. But once I grew to feel comfortable(r), it was an amazing experience.

At that time, I imagined myself possibly, and hopefully going to the Paralympic Games in Rio in 2016. But over the next few months, I struggled to fit in extra training sessions, due to the pressure and extra time I needed to spend with my homework, assignments and school work in general. Two years ago, I had surgery on my legs, and my surgeon placed two metal plates in both of my hips. Over the last few months, they have been seemingly rubbing against the bone, and causing me severe agony when I sit in my track chair. My doctor has booked me in to have the plates removed, but as of now the appointment isn’t until June 24, next year.

I participated in the All Schools Open a month ago, coming third place in the AWD’s in all of my races, and unfortunately after that event, I had traumatic pain in my legs for the next week without any relief. Unfortunately, it seems I’ve had to prematurely retire from serious competition for a while, at least until the plates are removed. I am still intending on competing in the Australia Day 10 kilometre race, but it will certainly be quite a trial for me, I have a feeling.

In a way, I am saddened by it, but it may be a strange hint of serendipity, as throughout the next few years, I will embarking into the senior school years, where I really must get more serious and dedicated to my school work to achieve the marks and goals I want to in the future. So over 2014 to 2016, my main goal will be completing high school and getting as good of a HSC as possible. I will most likely take a gap year, and possibly attempt to return to racing and increase my fitness before I embark onto many years more of university for my career goal.

I feel like in a way, I hope for what a lot of those with disabilities hope for. To be normal.

Photograph of Liam LuffLiam Luff is a 15-year-old wheelchair track and road athlete. Although he’s only been training since July 2012, he recently made first place in the national championships in the 100m, 200m, and 400m for the T34 category. Currently in year 10 at Port Hacking High School, Liam wants to study finance after he graduates. He likes playing basketball, hanging out with friends and watching movies. At the moment he is enjoying making his way through George RR Martin’s Game of Thrones novels. Liam has had hereditary spastic paraplegia since birth, which affects his legs.

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Stiff what? Life with a rare condition…

Three years ago, David Napier had never heard of Stiff Person Syndrome. That all changed in December 2010, when David literally became one in a million – that’s how rare Stiff Person Syndrome is.

By Don’t DIS my ABILITY ambassador David Napier

For over 10 years, I suffered from short term paralysis. I first noticed it while lying on the floor. I was frozen to the spot, could move my neck and head and that was it. Then while I was driving my legs they felt like lead; often, I would have to move them onto the pedals by lifting them with my hands.

In 2003, while lying in bed, I found I was unable to move my legs. I ended up being hospitalised for eight days. The opinion at that time was that I had a severe B12 deficiency which meant having regular injections and that was that.

Then the paralysis began in my arms and hands. Eating a meal was so much fun, and the medical fraternity could offer no insights into my increasing symptoms: “We have done all we can do, thank you and goodbye.”

I lived with that response for seven years, and during this time my condition continued to deteriorate. I would fall over, my legs became lumps of steel, they became very swollen, and the pain was horrendous, that’s it became, “Enough’s enough! You can’t go on like this.”

So I went looking for a neurologist myself using the internet. I found her through Sydney University School of Medicine’s web page. She is a consultant neurologist at St Vincent’s Private Clinic. She did not get my email for some time as she was overseas, so imagine my surprise when she did contact me. Finally, I had some hope.

We met in her rooms in December 2010, and after the normal examination, she advised me that she thought I had Stiff Person Syndrome, plus some other neurological deficits. She thought it was only a mild case, so medication was prescribed and I started to get on with my life.

Then in 2012, the wheels fell off. Very severe uncontrollable spasms my legs and feet started to invert from vertical to almost horizontal, and I started having seizures. Things became so bad that I was admitted to St Vincent’s Hospital, the first person in 12 years to present with a similar condition. I spent three weeks there having test after test and receiving medication to relieve the spasms. My hands and arms began to invert, I had paralysis, and became a bit of a show pony with my ability to throw things without even trying: mobile phones, cups, you name it, I involuntary threw it.

When I was stable, I was transferred to Camden Hospital Rehabilitation Unit to begin the task of learning to walk again. I had no idea just how hard that was. After five weeks, I was allowed to go home but it took a further six months before I could walk without thinking about it, but only in the house.

The consensus is I have Stiff Person Syndrome/Isaac’s Syndrome, but my life is back on track and my faith and determination – plus the unflinching support of my wife – has seen me through. Some of the bricks on the road had become boulders, but I still climbed over them.

The internet has become my way of sharing with people all over the world who have this condition. Many have become true friends and without them, the journey would have been impossible.

Photograph of David NapierDavid Napier says, ‘disability does not confine nor define me’ and that in many ways, his disability has been a blessing. He has been able to meet some of the most amazing and inspirational people on the planet and become a significant person in his grandchildren’s lives. David has a rare combination of Stiff Person Syndrome and Isaac’s Syndrome. He has a chin-controlled wheelchair he calls ‘The Beast’. He is the treasurer of the Camden Stroke Recovery Club, which he started with friends over seven years ago. He has also been a member of the Camden Council Access Advisory Group since its inception. David is the instigator behind Access Friendly, a grants program recently adopted by Camden Council to fund local businesses to install ramps in their entryways to make them accessible.

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