Scrapheap Adventure Ride returns for the eighth year - the biggest and best ride yet!

The Scrapheap Adventure Ride is a unique fundraising event which involves motorcycle enthusiasts from all over the country purchasing a bike for no more than $1000 and doing it up for an adventure ride through the Aussie outback, all while raising money for people with Down syndrome.

Last year we had a blast at Four Corners Farm Stay in Nymagee. We had 101 riders and together we raised over $97,000! This year we are aiming to top that and raise a new record of over $100,000 with100 plus riders.

Our destination for 2017 is Green Valley Farm near Tingha, which in turn is near Inverell in Northern NSW. We will be camping and Scrapping on the weekend of September 29 to October 1.

We will have the Adventure Moto Ride departing Wisemans Ferry at 8am on Thursday September 28. Warren Sakey, once again, has a great ride planned and we will be overnighting at Quirindi. More details to follow.

As always, there will be an Adventure ride loop on the Saturday where we are sure there will be thrills and possibly a few spills. On Saturday evening, there will be plenty of fun and entertainment for the whole family, including open mic music during our celebratory dinner auction and awards ceremony.

Of course, the best part of any Scrapheap is catching up with your mates and the friendly competition between teams and raising money for Down Syndrome Australia/NSW. However raising money is not our only objective as I am sure there will be a few drinks raised over the weekend as well.

Remember it is a family weekend and Green Valley farm also offers a wealth of activities for everyone including the kids, so why not bring the whole support crew!

Catering packages and accommodation options info will be provided shortly.

The registration this year is $100 for all bikes (Scrapper or non-scrapper), Please help us make this the most successful and fun year ever.

If you can't join us, we hope you will be able to sponsor one of this year's riders or teams. Make sure you connect with other Scrappers on Facebook by joining the Scrapheap group.

www.scrapheapadventureride.com.au

2016 Don't DIS my ABILITY: I can, I am campaign

Monday 21, November to Sunday, 11 December 2016

International Day of People with Disability (IDPWD) is celebrated annually in NSW with the Don't DIS my ABILITY campaign. It encourages communities in NSW to think and act inclusively, in all aspects of life.

This year’s Don’t DIS My ABILITY Campaign, ‘I Can, I Am’ celebrates people with disability who have overcome barriers to reach meaningful jobs. 

Don’t DIS My ABILITY seeks to inspire and build confidence in people with disability to find employment, but also challenges the public to re-evaluate their attitudes around the employment of people with disability. 

The campaign runs in conjunction with The International Day of People with Disability celebrated annually on 3 December. Join the conversation on Facebook @dontdismyability and watch the employment stories of Heidi, Iz and Nathan in film - all of the videos are also on the Don't DIS my ABILITY home page.

• Nathan Basha's I can, Iam ... an office assistant video on You Tube

World Down Syndrome Day 2017: theme announced

From Down Syndrome International:

The theme for World Down Syndrome Day 2017 has been announced: #MyVoiceMyCommunity – Enabling people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community.
Tuesday 21 March 2017 marks the 12th anniversary of World Down Syndrome Day.

Each year the voice of people with Down syndrome, and those who live and work with them, grows louder.

In 2017, we will focus on enabling people with Down syndrome (and those who advocate for them) to speak up, be heard and influence government policy and action, to ensure that they can be included, on a full and equal basis with others, in all aspects of society.

Working with our global network, the campaign will:

• Explain why it is important for people with Down syndrome and their advocates to speak up and influence local, national, regional and international policy makers. 
• Explain what the key policies are which affect the lives of people with Down syndrome and how they can ensure full society inclusion if implemented. 
• Explain how advocates can get involved – from media campaigns to direct political advocacy. 
• Explain how to empower people with Down syndrome (and those supporting them) to advocate for themselves and provide accessible tools to facilitate this. 

We will be encouraging people with Down syndrome to say #MyVoiceMyCommunity and we will ask everyone to respond to our call by sharing and showing the world how people with Down syndrome participate in the community alongside everyone else. You can take part simply by sharing details of WDSD activities or by photos, messages, quotes or in any way you choose, using the hash tag #MyVoiceMyCommunity as well as #WDSD17.

Our WDSD Global Video Event and WDSD Conference will both explore this important area of focus.

Down Syndrome International encourages our friends all over the world to choose your own activities and events to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.

We can share your WDSD World Events before 21 March and your WDSD Stories after 21 March on our dedicated WDSD website in a single global meeting place.

World Down Syndrome Day AwardsDown Syndrome International (DSi) announces awards in voluntary, professional and scientific categories to coincide with World Down Syndrome Day on 21 March. Going forward, the WDSD Awards will be presented every 3 years, with the next announcement on 21 March 2017.

Please email wdsd@ds-int.org to receive nomination forms and criteria.

Scrapheap Adventure Ride: Wrap Up, thanks ... and congratulations

A huge hats off to Perry Gilsenan himself who founded the Scrapheap Adventure Ride. He has sustained it very successfully for 7 years (and is working on the 8th already), tapped into his hugely supportive adventure biking community, and raised more than $500,000 for the work Down Syndrome NSW!

Here is his 'Wrap Up' of the 2016 event held last weekend, posted to the Scrapheap Adventure Ride Facebook page yesterday:

Well as the ‘mud’ settles after Scrapheap 7 its time to reflect on this year's great event.

• We had 102 bikes registered – our biggest year 
• We have over 150 including kids for dinner on Saturday night!! 
• We have raised $95,535 for Down Syndrome NSW (bringing the total raised by Scrapheap Adventure Rides to over $500,000!) 
• This is our biggest Scrapheap Adventure Ride yet!!

Firstly, thank you to all who participated including those who were unable to come due to unforeseen circumstances. You are all part of this success!!!

The fundraising effort for 2016 is very, very close to its target
 of $100,000 and has taken the 7 year Scrapheap Adventure
Ride total over half a million dollars!
 Scrapheap Adventure Ride 2016 My Cause page

Big thank you to Anita, Ken and team at Four Corners Farm Stay!! Given the extremely wet weather leading up to the event, Anita bravely put her hand up to be our Plan B. Their generosity and hospitality was remarkable!!! So many Scrappers have commented to that effect. If anyone is looking for a ride destination, we can highly recommend them!!!

We feel for Justin and Julie of Kallara Station – Tilpa, who made the difficult and correct call to defer to Nymagee. They were really looking forward to the Scrapheap being there. We will try again in the coming years!

To have to relocate Scrapheap Adventure Ride in less than 3 weeks was a massive undertaking. Scott Bridges and Claire from Down Syndrome NSW were totally committed to this task and worked so well as a team to make it a success.

The UP ClubThe welcome team from the Up Club manned the welcome tent in rain and then sunny and windy Friday afternoon and provided a Noisy Happy welcome to the riders. Thank you all for being part of the Scrapheap Crew!!

Scrapheap Adventure Ride 8
We have locked in our dates for 2017 but have yet to finalise the location. Keep an eye on Facebook and our web page.

I am humbled by the support and continual growth of Scrapheap Adventure Ride each year. It’s an absolute honour to organise and attend an event with such an awesome group of generous people!!

Perry

Founder, Scrapheap Adventure Ride

Scrapheap Adventure Ride Facebook page - check in here for the complete list of teams and the many sponsors of the event, many more fabulous photos and videos.

On representation ...

Putting kids with special needs in ads isn't just about making moms feel good

Maureen Wallace, She Knows, 19 September 2016

... My son has Down syndrome, and seeing diversity in advertising fills my heart as much as it empties my wallet. But while companies that practice diversity in advertising may be driven by sales, the social benefits are life-changing.

My child needs to see himself reflected in the world, and the world needs to see my son and people who share his differences reflected in the barrage of images hitting us daily ...

Diversity, difference and disability and how nine-year-old Knox Gibson is helping change media portrayals

Meanie Pearce and Julie Clift, ABC Central West, 15 September 2016

... That gave me a platform to raise this issue of underrepresentation in the media, which is really important. It ties into how people perceive disability and whether they're in or out ...

Disabled people don’t want to be your inspiration, but if they are it’s no surprise
Tom Shakespeare, The Conversation, 15 September 2016
Should we be inspired by Paralympian achievement? Commentator Frances Ryan recently counselled Guardian readers to be careful to think through their reactions to disabled “superhuman” athletes and academic poster boys like Professor Stephen Hawking. Treat people with disabilities just like everyone else, is the argument. Don’t see us as special. If we have overcome anything, it’s more relevant to highlight the barriers that a disabling world sets in our way, not our medical problems ...

Step Up! for Down Syndrome 2016: NSW

Step UP! for Down syndrome is an annual event that recognises the abilities and achievements of people living with Down syndrome. You are invited to join us and help celebrate Down syndrome awareness month.  You can help us support people with Down syndrome and their families by making a donation or by joining us at one of our Step UP! events and walking with family and friends.  The annual event brings people together to celebrate, connect and raise funds to support people living with Down syndrome.  There will be a barbecue, stalls, raffles and entertainment provided on the day. Register online and/or donate - links to each event If you cannot attend an event we encourage you to support those participating in the walk by making a tax deductible donation. Links to Step Up events nationally

Scrapheap Adventure Ride 7: 30 September - 2 October

Scrapheap is back for it's roughest toughest year yet!

The Scrapheap Adventure Ride is back for it's seventh great journey through the Aussie outback.

To the many people who supported scrapheap in the past we wanted to say a huge 

Thank You!

We would love your support again this year.

Help us reach our target of $100,000, to enable people with 

Down Syndrome reach their full potential.

  Sponsor a Scrapper  

Make a Donation

This year that destination is Kallara Station, Tilpa, in western New South Wales, where all ‘Scrappers’ plus family, friends and supporters will meet for a weekend of fun and entertainment at a campsite from 30 September 30 to 2 October .

That's over 900km from Sydney!

We have 60 riders registered and have raised of $15,000 so far! The aim is to raise $100,000!

Over the past 6 years Scrapheap has raised over $400,000 for 

Down Syndrome NSW which has had a huge impact on people 

with Down syndrome and their families.

'I'm your fan'

Some years ago, Special Olympics produced one of the best short promotional videos ever, just before a World Games. And now they have done it again:

I'm Your Fan
Central Films for Special Olympics, on Vimeo,  May 2016

• The earlier video is here (it was re-issued for the 2014 European Summer Games, but was originally released several years previously).

Swallowing difficulties: awareness and information

Yesterday (11 May) was the first Swallowing Awareness Day organised by Speech Pathology Australia.

Swallowing difficulties are common for people with intellectual disability, including those with Down syndrome of all ages. Assoc Prof Bronwyn Helmsley from the University of NSW has written about swallowing difficulties for the NSW Council for Intellectual Disability:

• It's a lot to swallow! Swallowing Difficulties
• Swallowing - 5 Facts for People with Intellectual Disability
• Swallowing Difficulty and People with Intellectual Disability

You can also listen to the articles from the link on the page.

Speech pathologists are one of the main health professionals working with people who have swallowing difficulties.

Swallowing difficulties are also called “dysphagia” (pronounced dis-fay-gia) as this means ‘disorder of swallowing’.

You can find out more about the awareness day here

Register now for the ride of the year

Registrations are now open for Scrapheap Adventure Ride 2016

Visit  the Scrapheap Adventure Ride 2016 website here and click on 'Join The Ride'

Scrapheap Adventure Ride 2016: fund raising for Down Syndrome NSW

The Scrapheap Adventure Ride 2016 (the seventh Scrapheap event) destination has been announced - Kallara Station, Tilpa NSW:

The Scrapheap Adventure Ride is a unique fundraising event which involves motorcycle enthusiasts from all over the country purchasing a bike for no more than $1000 and doing it up for an adventure ride through the Aussie outback, all while raising money for people with Down syndrome. 

In just six years the event has raised nearly $400,000 for Down Syndrome NSW.
Riders begin their journey at home or wherever they like but arrive at the same destination. 

This year that destination is Kallara Station, Tilpa, in Western NSW, where all ‘Scrappers’ plus family and friends will meet for a weekend of fun and entertainment at a campsite from September 30 to October 2.

Our target for 2016 is 100 riders raising $100,000 for Down Syndrome NSW.

• Scrapheap Adventure Ride 2016 website
• Scrapheap Adventure Ride 2016 on Facebook 

21 people with Down syndrome at work - 21 different jobs (21)

Day 21
After a long and fulfilling working life, comes retirement - a relatively new stage for many people with Down syndrome, and steps are being taken to support them to manage the transition from work. We wish Shelli Fanning and others retiring soon, a happy time doing more things that they enjoy as they grow older.

Woman with Down syndrome retires after fulfilling career

Scott Hewitt, The Columbian, 11 January 2014

Shelli Fanning, 46, worked as housekeeper at Red Lion at the Quay for 23 years ...  It took some time and on-the-job testing to figure out what was easy for Shelli and what required more training and practice, and to set a reasonable number of work hours (not quite 20) per week. But to say that Shelli was coddled or that her work wasn’t valuable is absolutely untrue, according to Red Lion General Manager Paul Thornton ...

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The 21 people with Down syndrome at work - 21 different jobs posts have been compiled into a single page, linked in the list just under the banner at the top of this screen. 

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It was remarkably easy to find 21 different people with Down syndrome doing 21 different jobs, most of them highlighted in the mainstream media - that might not seem to be such a big deal, given the enormous number of jobs in existence, and the ubiquity of social media that allows us to share them, but it is a very significant change in the space of just two generations. 

And we know of people working in many different fields - farming, all areas of hospitality, as teachers' assistants, in many retail settings, in factories, in different clerical roles, all aspects of the arts to name a few. Some people have had several jobs, others have worked for long periods in one job, some work at several jobs at the same time, stitching together a full-tme working life.

Few of them are working without support, but we started with the concept of the We can work with the right support campaign and close this current series with the same thought. It can be seen from these twenty one examples, that tapping into each person's interests and talents and providing support where needed can lead to very satisfactory employment experiences for employes with Down syndrome and their employers.

There is still a long way to go for many people with Down syndrome who want to work, those who can employ them and those who can support them, but they are showing us how it's done.

21 people with Down syndrome at work - 21 different jobs (20)

Day 20

A great deal of progress has been made over the last couple of years, with increasing inclusion of people with disabilities in all forms of advertising. And none is more prominent than Australian model, Madeline Stuart, as you probably know.

Her recognition in the media is largely about her successfully emerging career as one of very few professional models in the world with Down syndrome, and she has been ready to capitalise on her access to media to advocate for others with Down syndrome too.

Lately, Madeline has worked for a second time at New York Fashion Week in February, and the most recent media coverage has been for a wedding venue promotion in which she  models a number of bridal gowns:

...  ‘If she gets a lot of attention, it’s amazing because we can speak to the world about inclusion and diversity. In a way, if she doesn’t get as much attention it means it’s becoming the norm. It’s a win either way.’

Madeline's own website will lead you to her presence on other social media platforms.

Added 21/03/2016:  Madeline Stuart, Supermodel With Down Syndrome Wants You To Dream Big, Julia Naughton, HuffPost Australia

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The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 

21 people with Down syndrome at work - 21 different jobs (19)

Day 19

We all work for many reasons, and you can see by his reaction to his first pay day  that for 23 year old office worker Tim, that is an important one. He has more to say about his job here:

About Down's Syndrome : Tim

Down's Syndrome Association (UK)
... I got my first pay cheque this week. It was great. I now have my own bank account and card. I can save money and spend money. The first thing I did was take some money out using my card and brought a round of drinks for my family and friends! ...

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The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 

You contributions are welcome, if you would like to highlight your own job, or someone with Down syndrome who is working - email the editor at downsyndromenswblogs@gmail.com

21 people with Down syndrome at work - 21 different jobs (18)

Day 18

Working with cars is an attractive proposition for many people, including Nick Jones:

Teen with Down syndrome makes big impact at part-time job

Melissa Cutler, Fox4 News, 11th February 2015

A Highland Park high school student is making an impact at his part-time job. Nick Jones' task is to make sure every car on his dealership's lot is perfect, and his work is making a bigger impression than he may realize. One thing that sets 18-year-old Nick apart from many is how happy he is to go to work ...

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The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 

You contributions are welcome, if you would like to highlight your own job, or someone with Down syndrome who is working - email the editor at downsyndromenswblogs@gmail.com

21 people with Down syndrome at work - 21 different jobs (17)

Day 17

Work experience an excellent way for senior high school students to get to know something about what different jobs involve. Mater Dei School, a Catholic special school at Camden (NSW) organises work experience for Year 10 - 12 students, with a weekly commitment for 15 week rotations. More than 30 local business, offering a range of services and products offer places.

Ethan Campbell is currently doing at work experience at Mt Annan Vet, where the staff are very supportive and impressed with his hard work - in the operating theatre, X-ray room, clipping dogs and dental cleaning. He is loving every minute, including a surprise visit from his own dog, Henry.

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The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 

You contributions are welcome, if you would like to highlight your own job, or someone with Down syndrome who is working - email the editor at downsyndromenswblogs@gmail.com

21 people with Down syndrome at work - 21 different jobs (16)

Day 16

Jasmine Prince is taking the path of creating/finding a job based on a particular person's interests and talents to a new level by providing jobs for others with Down syndrome ...

Woman with Down syndrome launches her own business

Evelien Sleutjes Happiness Wave, 8 October 2015

Jasmine Prince, a beautiful young woman with Down Syndrome just launched her first business, a sewing company. She inspires others to follow their dream and work by her side. With a little bit of help of her mom Laura Prince, who owes a a company called “Sew Inspired Stitch Lounge”, an after-school sewing program. Jasmine showed natural talent when she started sewing at a young age, and now she’s create job opportunities for people with Down Syndrome herself ...

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The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 

You contributions are welcome, if you would like to highlight your own job, or someone with Down syndrome who is working - email the editor at downsyndromenswblogs@gmail.com

21 people with Down syndrome at work - 21 different jobs (15)

Day 15

Potter Max McAuley's story illustrates another path to creating a job using your particular talents, and looking broadly for financial support.

Pottery to the Max - Shouting out loud about Max’s talent

Alex McAuley, The Life That Max Built, 30 September 2016
... Max and I applied for a grant from My Choice Matters, a NSW state government initiative to assist people with disabilities to achieve a specific goal. We applied for funding for Max to start his own business ‘Pottery to the Max’ with a view to him selling his work in order to fund his continuing ceramics classes ...

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The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 

You contributions are welcome, if you would like to highlight your own job, or someone with Down syndrome who is working - email the editor at downsyndromenswblogs@gmail.com

21 people with Down syndrome at work - 21 different jobs (14)

Day 14

Laura Green - UK entrepeneur in fashion

The business owner with Down's Syndrome (video 3m 21s)

Kate Monaghan, BBC News, 10th July 2015

"I didn't want to work in Asda. I wanted to run my own business," says 28-year-old Laura Green. The young entrepreneur from Runcorn, Cheshire, says that because she has Down's Syndrome people didn't think it was even worth talking to her about her future ...

"There was no career planning at school for me. I was just killing time until I was moved onto the next step in the system. After three years I said 'no more' and I left." With that, Green spent time with family and friends trying to work out what it was she wanted to do with her life. 

"I decided that I wanted to work in fashion. Not for someone else but I wanted to set up my own business selling fashion accessories. So that's what I did."

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The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 

You contributions are welcome, if you would like to highlight your own job, or someone with Down syndrome who is working - email the editor at downsyndromenswblogs@gmail.com

21 people with Down syndrome at work - 21 different jobs (13)

Day 13

Any writer will tell you how difficult it can be to make a living by writing, but getting a book published is a great start, and Marcus Sikora is already finding ways to expand the possibilities:

This 25-Year-Old With Down Syndrome Just Published His First Book

Rachel Kassenbrock, The Mighty, 27th July 2015

Marcus Sikora has a flare for the creative. The 25-year-old from Omaha, Nebraska, has acted in school productions and wrote and produced a one-act stage performance in cooperation with a local high school.

Sikora also has Down syndrome, but that hasn’t stopped him from achieving something that would be impressive for any 25-year-old. As of June 2015, he can add “published author” to his list of accomplishments ...

See also Why does Marcus have first billing on the book Black Day - the Monster Rock Band?

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The 21 people with Down syndrome at work - 21 different jobs posts are being compiled into a single page, linked in the list just under the banner at the top of this screen. 

You contributions are welcome, if you would like to highlight your own job, or someone with Down syndrome who is working - email the editor at downsyndromenswblogs@gmail.com