The power of story telling

Are you looking for a children’s book to explain what spina bifida is to a niece, nephew, son, daughter or neighbour etc? Or maybe want a book on diversity and acceptance to read to school students? Then check out ‘Right Under my nose’, a text I learnt of via the International Federation of Spina Bifida and Hydrocephalus.

Some of you may know I was on the IF Board for four years, another life ago. With Eli, a lass from Norway (General Manager), and Sonya, from Qld (Social Worker), I planned and facilitated the first IF workshop for adults with this condition. This was revolutionary.

Most conferences until then were a forum traditionally for parents and professionals. They focussed on medical issues, and mostly concerning children. For some families such details are needed, yes,

But the time has long gone when this was enough and appropriate.

Parents at the 2002 conference and workshop in Dar es Salaam heard how Eli, Guro, I and a few other adults grew up; about how we were active in our own local communities; the activities we participated in; our highs and lows. This is not to say our way was the only way. No, But it did give an idea of what is possible when barriers are overcome. Sharing our experiences helped bring parents together as never before. From this conference a new parents’ association formed and people would talk to each other and swap solutions while waiting at future clinics instead of being isolated and keeping to themselves.

Since then adults have played a strong role in the IF conference program and planning of most, if not all, conferences. The stories shared during those initial Oslo and Dar es Salaam workshops bore testimony to the strength of story-telling and sharing with and amongst peers.

So taking time to read a picture book might sound unimportant to some. But it can have a big impact. Right under my nose deals with some sensitive issues. It does this in a dignified manner and although I might have unapproached some of the text differently, I am glad it is out there.

As a bookworm of old, who has scoured shelves (and now kindle-land) I read of the Little Mermaid, Cinderella, The Little Prince and many other texts which helped shape my views. It is exciting to discover more and more books which children with different experiences can relate to.

Growing up I was interviewed by an author for a book in which she combined some of my traits with some of two of my friends. The result was a story of a young girl who goes to hospital during school holidays to save missing school. An older boy helps her accept this part of her life. One day I intend to take the themes in ‘Boy on Sticks by June Epstein further. Scope exists for adventures and simple daily life experiences to develop into another book. My grade 3 view of Leo’s scouting experiences and the young lass’ grief at seeing her dressing gown packed have expanded. I now know they reveal only part of the characters’ rich young lives with their varied potential.

The Genetic and Rare Disease Network speaks of us being more than the sum of our genese. This is so true.

When Eddie shares part of his story, in Right Under My Nose’ it reveals how important it is for us all to have dreams, challenges and independence. At times this is achieved by self advocacy. At other times family, peers or others may become the advocate or supporting person.

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A Weekend of Firsts – part 2

And back to the firsts –

Regular readers will know about our white fluffy Bishon frese Lucy.

White fluffy Lucy, our white bishon frise, when younger and hoarding a collection of odd shoes.
Photo of Lucy when younger and hoarding shoes. Thankfully, she now only likes Martin’s furry lambswool slippers.

Work Life Balance signpost Stock Photo - 14094848 Well, in getting myself ready to resume wheelchair basketball after many a decade of inactivity, I decided to do a few drills at the local primary school’s basketball court.

On weekends we often head to the shops ,and while Martin buys the paper and milk, or a warm treat for lunch, Lucy and I generally explore the local surroundings – meaning I learn to negotiate rough pathways and steep kerbs when people park inconsiderately across their driveways.

Traditionally we’ve walked through the local park and checked out the swings and play areas that offer a seat for the weary.  However pup moves faster and I get less exhausted when we take the wheelchair.The gradient is still a challenge for my stomach and shoulder muscles – although the ease at which this often is reduced by simply pumping up flat tires is somewhat miraculous I must say.

So of late we tend to visit the primary school’s basketball court and do suicide drills, i.e. I push fast from one end to the other and she runs. This works two fold. I get fitter and she gets tired.

Lucy the pup asleep, curled up warmly on our study chair.
Tired puppy

Exercise is good. Yes. Mobility is vital. Yes. Fitness is important. Agreed.

But back to the weekend of firsts.

Using a wheelchair, opens windows to new and varied experiences. It offers flexibility in mobility so I can explore more of Rotto and other places.

It also has new challenges to overcome. And not just people’s perceptions, which interestingly (sadly/predictably/ concernedly) do differ from time to time when I meet them at meetings or in the street – me sitting instead of standing as I generally do using crutches (or sticks as I tend to call them). But we’ll look at attitudes another time.

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A Weekend of Firsts

Thanks to a  school raffle win Martin and I experienced an amazing Red Balloon Experience flight over to Rottnest Island (known to locals as Rotto) recently.

plane

The staff at Jandalot Flight Centre were awesome. After an exploratory visit the weekend before to suss out access, we turned up bright and early to be greeted by the news the office was under construction. No problem- another front entrance led us out to the tarmac to check the suitability of a different plane which promised more space in the back for our 2 wheelchairs and hence looked a tad comfier than the expected scenario of one person in the back nursing a few wheels. Yes!

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The 4 seater meant we now had a pilot and co-pilot (building up his hours) and was far nicer to be able to sit together and enjoy the trip over in style. No need for earplugs- though they (and a sick bag) were on hand if required. And the pre-flight safety check was handled well- even if one point of take off had us wondering if the door was ever going to be closed and the pilot buckle his own seatbelt.

Embarking and disembarking the plane was relatively easy – if not quite elegant, We slid ourselves up the wing and across into the seats.  Muggins got her bottom wet being first in and then husband was treated to a towel so his derrière didn’t suffer the same fate after he offered stacking suggestions for our wheelchairs!

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What a spectacular view! Our photos often caught the plane wing but you get the gist of it I hope. Not a cap in sight. The different blues were astounding. The return journey offered sights of Perth skyline to paint another day too.  And our tiny plane was so much quieter than the 12 seater plane once taken to King Island.

10168105_10153958873160494_330066522_n       Any dreams of doing the Rotto swim one day were quelled when I saw the reality of the distance from mainland to island from the sky. 12kms doesn’t sound impossible to someone who once did 3.8 training sessions (back in the dark ages), and all those sharks (Colin…) that explore merrily up and down the coast- doesn’t worry me. They’d likely taste other swimmers before me…and if not- it is their territory anyway.  So what decided it? The idea of salt water in goggles for such a long, long time. Horrid.

A smooth landing, complete with appropriate landing message from a wacky pilot acting as pseudo air-steward with aspirations of becoming a commercial pilot.Then a slight delay while the pilot arranged one of the accessible buses into the township from the airport, and we were off, for a good 4 hours of R&R.

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The bus driver, like the pilots, was cheery and knowledgeable in what to see and do on the island. The quiet lift worked smoothly and our island holiday commenced knowing when to return to the sheltered bus stop later that day thus not rushing our relaxed day in order to push back to the airport. Excellent. Next time we’ll be sure to ring in advance and check the time table as it might have been required on the other side of the island. Serendipitous. With such advance warning the timetable can be adjusted to suit visitors’ needs.

Any trip to Rotto demands a trip to the bakery. Not only because the Duff clan knew the original baker very well, but because the cream cakes and donuts look (and taste) so scrumptious with a morning coffee.

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Wander time. Had we been staying on the island we’d have experienced an afternoon play about the history of the island when used as an internment camp during WW1. Instead a visit to the museum revealed tales told and untold. Next visit we might also explore the movie night in a hall where Martin and his family once dealt with steps. It now offers a windy ramp with good side access.2014-06-27 14.46.55             2014-06-27 13.34.08

Accessible loos are well located  around the settlement. We didn’t venture too far this trip as our destination was the pub for a belated lunch looking out over the bay after admiring the view and Mr Percy’s pelican relatives along the way. And yes, my need for quokker sightings was well met too. Such friendly little critters. Not like rats at all despite the island’s Dutch name (Rat’s nest.) More like tiny inquisitive, and very sleepy, kangaroos. Why they sleep on their head with long tail outstretched for balance defies logic unless that is how they keep warm.

And so the day passed.

 

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Down the rabbit hole

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Getting sidetracked when preparing a presentation for a group of 65 or so librarians and museum staff on issues around disability inclusion is to be expected from me, with my Myers Briggs enfp’ishness. (Check out Myers Briggs and Steven Covey if you don’t know what this means.)

Or so you all probably think.

What is not standard is the lass putting her technological skills into overdrive and creating a new fb page for her business.

So if you want to take a trip down the rabbit hole with me, do join me at Kerrie Duff Consulting on Facebook. It’s a work in progress.

Like me.

Like life.

Welcome on the journey.

Consultant and Trainer Background

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Kerrie Duff (nee Engel) is available to speak and train on human rights based issues, specialising in disability and diversity, and community awareness. She is a member of two local council access and inclusions groups and offers training in the private and public sector. She also has experience speaking to school children and service groups.

So who is Kerrie and what are her qualifications:

A quick run down – Kerrie was born with a neural tube defect called Spina Bifida. She walks with crutches and at times uses a wheelchair (for wheelchair basketball, tennis and walking her dog.)

Kerrie and Lucy seated near teh Christmas tree
With Lucy on her first Christmas as part of the family

This hasn’t stopped her living a full and varied life with lots of patchwork, reading, cooking, travel and other adventures along the way. Speaking of travel she was introduced to her husband via mutual friends from Norway, moved to Perth to join him 10 years ago ,and hasn’t looked back since.

Martin and Kerrie at their engagement party

 

 

Kerrie and Martin at their engagement party

 

 

Kerrie grew up in Melbourne , the eldest of two children, and was involved with the Spina Bifida Association Victoria (SBAV) from an early age. She has always stretched the limits of ‘what if’ and never been afraid to give something new or challenging a go. Continue reading

Dream, Design, Develop and Diversify

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Welcome to the first post from Kerrie Duff Consulting.  It seems fitting to enter the world of WordPress technology on Easter Sunday- a time of renewal, refreshment, family and friends, A time of growth and inclusion in our varied communities.

So who is Kerrie and what is her business all about?

Eli Runa and me IF plannings

Kerrie (pictured above right) grew up in Melbourne and moved to Perth in 2003. She recently graduated from Curtin University with her Masters in Human Rights and has a passion for disability, gender and indigenous issues. Before returning to study she worked at People With disabilities WA (PWdWA) as project officer for Disability First Stop, followed for a time as the senior systemic advocate.

In 2013 her Master in Human Rights internship with WA’s Individualised Services (WAiS) evolved into a part time communication’s coordinator role and her Cert IV TAE traineeship at Rocky Bay progressed into a casual role in the Training Department.

Over the years Kerrie has held various positions on boards and committees at local, national and international levels.  Recently she undertook a training course through the Australian Institute of Company Director‘s thanks to a scholarship via the Leaders for Tomorrow program which she participated in during 2013.

Kerrie puts her International Training in Communication skills (once called Toastmistresses) to good use. She speaks at school, community and service groups on a range of advocacy issues and volunteers time participating in a disability awareness consumer groups with the Town of Melville and Cockburn.

She is an active consumer representative with the Telethon Institute for Child Health Research – recently renamed Telethon Kids Institute – and has given presentations to government and non government organisations in Victoria and WA. She held the role of President for Women with Disabilities WA in 2013 and was Vice President of Spina Bifida and Hydrocephalus Association WA during 2011-2013. Currently she serves on People with Disabilities WA’s Board as Vice President and as a general committee member of the Women with Disabilities Australia (WWDA) organisations.

Kerrie’s understanding of diversity began at an early age. She went through the local brownie, guide and ranger movement experienced special school and mainstream education.

Over the years her involvement in Paralympics (winning bronze for the 400mtrs freestyle in 1984), editing a text ‘Challenge and Hope: disability, disease and trauma  in the developing world’ (looking at World Vision International (WVI) projects) have combined with her own varied life experiences to shape her ongoing ideas and beliefs.

She represented the Pacific region on the International Federation for Spina Bifida and Hydrocephalus Board for two terms between 2000-2004.  She has been a guest speaker at World Vision International Asia Pacific community workers training workshops on disability and development issues. Kerrie speaks to community groups and school students on a range of issues, and has a strong sense of doing her best to empower others to reach their potential.

You will find Kerrie on Facebook, Linked in, Skill pages, the World Cafe and in a range of other media.