Monday, April 30, 2012

Challenge your beliefs...

Challenge what you believe about what people who are disabled can be, do and achieve.

Meet someone who has a disability. Engage them in conversation. Ask them intelligent questions...not just 'how's it going'.

Go on... do it.

You'll be surprised.

Monday, April 23, 2012


It was while I was searching for an image of a smiling, happy person in a wheelchair, that I stumbled across this one. I laughed. This picture represents the twin things that have ruled our lives for the past several years.

My son in his wheelchair, and my daughter with her dance aspirations. It's a photo I could have taken myself to depict 'my family'.

Interestingly the content of the blog from which I sourced the photo (linked above), had a very different story attached to it.

It was a story of a face-off between a lady in a wheelchair, and the choreographer of a ballet. It's a thought provoking recount of how one's own situation, dictates how we react to various scenarios.

Certainly I have been known to be hyper-sensitive to many disability related issues.

I recall getting in to a fiery debate regarding the use of disabled rest room facilities by a plethora of 'others' who are not 'disabled', but consider themselves so. They are not 'disabled' by nature of having young children in tow, or being in a hurry to 'go'. That is 'incovenienced', not 'disabled'. Or so I said at the time.

The debate did not go well, with me leaving the discussion fairly upset.

I couldn't make them see, and clearly they felt I was being unreasonable.

The sign on Rest Rooms and Parking Spaces clearly depicts a person in a wheelchair. It does not depict a mother with a shopping trolley or a pram, or someone whose left their run to the loo too late to want to wait in a queue. People in wheelchairs can not use other facilities. Mothers with prams, and people with bladder control issues, can. It's actually a simple courtesy.

I have a big van with a ramp and a government issued Disability Parking Permit, which clearly states 'to be used only when transporting the person listed hereon'. I would no more park in a disabled parking bay without my son on board, than fly to the moon. Yet I see others do it all the time. They take exception when I say something...and I always do.

Similarly, no matter how many children or babies I've had in tow (and I have four children), I have never ever used the Disabled toilet facilities. It's wrong. There are Parent and Baby Rest Rooms in most modern shopping centres these days. Why use the very few Disabled toilet facilities when the Disabled have nowhere else to go?

I accept that 'some' Disabled facilities are dually used by customers mobilising in wheelchairs and Parents with children where signed as such. But that is not in the majority.

I've had to haul up stakes half way through shopping and go home with Mr A in his younger days, because someone decided that their needs for 'convenience' were greater than his for 'necessity'.

Please, please, please remember that it's tough enough for people in wheelchairs and their families.

Don't make it tougher by parking in their parking bays and using their Rest Rooms.


Sunday, April 15, 2012

The importance of Family...

There was a time not so long ago, when parents surrendered their disabled children to 'the authorities' for care. A disabled child was considered a burden and 'normal' folk, not considered qualified to care for them.

This resulted in enormous grief for many parents, and a terrible situation for many of the children concerned. Abuse was rife, and neglect, commonplace.

Even now, there is a culture that suggests that it's best for the family to allow 'the experts' to manage the care of their disabled loved ones.

This is of course utter nonsense, but it's out there.

Who knows better what needs to be done for their child or adult dependent, than the very people who live closely with them and have their best interests at heart? The Experts or the Family?

We have battled this for our son's entire life. We have steadfastly ignored many Expert Opinions, always being guided by what we knew to be the best course of action for Mr A.

This has been considered brave by some and foolhardy by others, but had we not dug our heels in on many an occassion, Mr A would not be the person he now is living the life he now has.

If we'd followed Expert Advice, Mr A would be trussed up like a turkey with various orthotic appliances, living at home with us and his younger sister, accessing 'Day Respite'...another term that fills me with alarm on one hand and fury on the other.

Instead, he wears orthotics for short periods of time in the privacy of his own home (note I said 'his own home'), and attends sporting events, college, and outings at whim, and generally has the same choices for an independent life that you and I enjoy.

So, who's right?

I must say though, that this would not be possible without the help of our large and extended family and the help of Mr A's very dedicated Personal Assistants. He has a team of four PA's. Each of them chosen for their specific skills or ties to Mr A and their genuine interest in supporting him in living an Equal Life to that of his able bodied peers. To them we are truly grateful.

The sense of pride and achievment that Mr A feels in living independently is greatly enhanced by his ability, through the support of his team, to arrange and participate in family events, without us being directly involved. He hosted Fathers Day last year, with the help of his Managing Assistant who preprepared a sumptuous brunch for us. He is currently planning his own 21st birthday party with assistance from the same person. He attends family gatherings with their help with transport and their sensitive and seamless support. These things all make him feel truly adult and accomplished.

We of course, see the changes in him and his stature in the eyes of his older brothers, who see him now as the adult he is, and not the 'little' (and therefore helpless) brother.

Family truly does know best.