Getting around in the 21st century

Who’d think a broken finger could lead to so many changes and reframing of viewpoints (mostly mine)?

No using crutches or manual wheelchair for one then two then 6 weeks.

Two months can cultivate a firm reliance upon a motorised wheelchair, that I continually reframe in my head as such when people refer to it as my ‘electric chair’. It uses electricity to power it, yes, but I am not being frizzled to death folks.

Kerbs are simple to mount and hills easier to climb. Remembering to clip my safety belt in the MPT was tricky at first. One taxi ride and feeling unsafe quickly reminded me that footrests and belts are there for a reason. Strapped in by the van’s belt I may have been, but safe I did not feel. Yoda says, “belt put on shall you, always in van.’ Yes sir. I no longer feel concerned backing out of the multi purpose taxi wobbling side to side at a snail or hare pace fearing I will fall off the edge onto the pavement. Weekly visits to physiotherapy and doctor have cultivated a sedate, but steady, pace entering and later backing out onto the hoist. Vertigo is a thing of the past. Fears can be conquered.

An extendable stick aides in the picking up of so many bits and pieces dropped here and there. The redecorating of walls and doors is less of a concern now that the backwards operated joystick is under control. Missing paint. Wood. Ah what’s wrong with adding the odd new hue to the decor. 🙂 Why must I move the joystick left if I want to go right when moving backwards? My brain is confused. Cars work differently.

This chair not only saves me from being stuck in one place for months. It is supporting Lucy to lose the odd extra kilo from unexpected but ever so gratefully received treats that find their way to her when kitchen benches are further away than expected. The ever hungry bichon is starting to enjoy more jogs than walks since the wheelchair moves at a grand pace along the Booragoon Lake, now the pavement refurbishment has concluded. As long as the pavement looks relatively smooth and uncracked. She doesn’t necessarily feel the so pleased when we slow down quickly at unexpected cracks or rises in other footpaths that give me the jitters, not to mention when a driveway is uneven to the adjoining pathway on a trip to the local shopping centre or someone has parked over the walkway and I am uneven on grass and path. Nor do I feel so much joy when shops insist on placing their wares in displays in the midst of access pathways between the main carpeted displays. Seriously, why do so many aisles end up in dead ends, blocked by hangers of more wares. How is a person meant to turn around in a tight spot even using the most fantastic of tiny circumference motorised wheelchair. Don’t you want my business Mr/Ms Shop Owner? What about my husband’s.

Once was enough for me to offer to play ‘trains’ with my husband going up a steep hill. When his manual wheelchair stopped abruptly on our first and only trip to/from to local shopping centre neither of us expected my wheelchair had a rather huge hiccup motoring him along intent on saving his shoulders. It’s a somewhat unique feeling when a heavy chair tries to do a mono/wheely on its back tiny wheels while a lighter chair wants to throw it’s occupant out front ways, having stopped abruptly at a most unexpected uneven rise in concrete. Heart palpitations. Lesson #657. I go on ahead, or hang back, while he travels at his own pace.

But all in all the past months have been fine. The first option of trying to work a manual wheelchair and not go around in a circle whilst pushing with one arm on two rims, one designed to steer me left and the other right, could have driven me barmy. So would have staying seated before the tv, appealing as it sounds for a tiny time. And yes I’ve read some excellent novels.

Mobility is much underrated. And can be achieved in so many different ways. Society has certainly advanced a long way from the days when I was two years old and relied on a piece of wood with castors fashioned by my dad so I could scoop myself around the house and garden. But that’s a story for another day.

Disability and Diversity Training

Kerrie has experience in speaking to small and large community groups both locally and overseas. She addresses private and public organisations and offers disability awareness training to local, state and national government.

As a member of the City of Melville Access Advisory Committee Kerrie has helped train and inform local community government staff and has also spoken to other Town’s advisory groups and councils.

Previously in paid and voluntary capacities she addressed Rotary and Lions groups for fundraising and awareness raising purposes.

Kerrie has expertise in human rights issues such as disability rights; gender and development; cultural awareness; systemic and individual advocacy. She is also well versed in policy development, governance and administration.

Kerrie has a passion for seeing future generations become inclusive and accepting of diversity and speaks to school students on a range of issues.

To find out more about how Kerrie Duff Consulting can assist you take a look at the Facebook page or contact Kerrie via Linked In or Twitter.

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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