Necessity has driven humankind to strategise, design, create and innovate (some of these humans are featured in the ‘Australian Of The Year’ monument pillars along Lake Burley-Griffin. See featured pic). This need has resulted in contributions, both beneficial, and at times detrimental because we have always strived for ways to fulfil a real or perceived need.

We live in an ableist world that is slowly recognising that people of all abilities have very similar needs when it comes to the desire for other experiences. People with physical, intellectual and emotional disabilities move around the globe, and this has resulted in significant advancements in the acknowledgement of, and adaptations required to facilitate every traveller.

I didn’t always fly, drive and travel with a disability.

Hobart airport tarmac, disembarking, May 2012. My first, most visceral disability travel moment. I pictured my forward plunging body lying, bleeding from every point of bitumen-contact with each step down the horrifyingly vertical, thin, metal, waiting-for-an-accident-to-happen-to-anyone-stair-mountain. Each step down seemed to bring me no closer to the bottom – until it did, of course.

This was, yet another, characteristically abrupt development in my Limb-Girdle Muscular Dystrophy (LGMD) journey. And so my travelling, including flying with a disability, life began.

Enjoying an outing today are we? This was a question I was asked when at my local garden centre recently. One small comment but one huge indictment on society’s perceptions of disability. The guy seemed nice enough, displaying well-maintained teeth in his wide, jovial smile, just another customer like me. Unlike me, he wasn’t in a wheelchair, and neither was my companion, who didn’t get asked if she was enjoying a nice day out.

On a ranking of awful things to say to someone this barely makes a mark in the thoughtful-to-heinous greetings scale but two things bothered me about this question:

For better, for worse. For richer, for poorer, in sickness and in health…

I said this to Leanne more than 30 years ago; I meant it then and I mean it now. Plenty of us have said these words, and I bet few of us really thought about what they meant. Few of us really could.

Leanne asked me to write an article for her, providing some insights and perspectives from a carers point of view, so here it is, with the facts, the feelings; the dark and the light.

Caring for someone in a physically or mentally vulnerable situation can at times be a more draining, compromising and lonely experience than their afflicted charges bear. Our disabled are marginalised, and our carers are seriously overlooked. I discuss how we can all help the support people around us.

My life would be so unimaginably 'less than' without my wonderful, supportive, unpaid carer AKA my husband, Gaz. And like millions of unpaid and loving carers around the world he doesn't question his role because he's that kinda guy and we have always been a team. This caring role has ramped up in significance quite rapidly over the last few years in particular and has unquestionably come with compromises, some of which I have mentioned previously.

An experienced wheelchair retailer once told me he believed the older you acquire your disability, the more difficult it is for you to accept the changes that come with it. I saw buying my new wheels as a pragmatic choice, thinking of my safety, the convenience of those around me and my quality of life; but looking back now, I was not in touch with my true emotions and was harbouring a generous amount of resentment and sadness towards my situation.

Revelatory experiences come in all shapes and sizes and mine came in the form of a five-day stay on one of Australia’s tropical treasures - Hamilton Island. The peaceful, palm-filled hilly mound is a tiny part of the island enclave known as the Whitsundays in North Queensland.

My epiphany was:

‘I am – undeniably – physically disabled.’

In the Winter of 2016 Gaz and I became the owners of a Kia Carnival. Not our empty ester vehicle of choice but you can’t have everything.

In Spring of that year I became the wheelchair-using passenger in the newly accessibly modified Kia Carnival.

As you may know from my previous post, the need for a modified vehicle came about due to my inability to drive safely as the symptoms of LGMD worsened. The world of modifications is getting bigger every day and knowing which options to take can be quite daunting. The task of deciding what size and type of car you need and the appropriate modifications together with your budget can’t be taken lightly.

Accessible modifications can be as small as a remote control to open sliding doors to a fully automatic ramp allowing a wheelchair user to enter the car as a passenger or as a driver.

The independence brought by being in the driver’s seat is generally unspoken and blanketed by the layers of the very real and conscious logistics related stuff: purpose, traffic conditions, time limits, car repairs, kids tantrums, toll costs, car parking and more.

So what happens when the ability to drive is no longer or has never been available to you?

Acquiring the symptoms of a progressive condition takes some getting used to but why do so many of us feel the need to cloak these changes in an ugly cape of lies (to ourselves and others), excuses and denial? Why do we cling to the old normalcy so frantically? And what harm are we doing to ourselves in the process?.

If you have had the time to run over my previous musings you will know that I have a condition called Limb-Girdle Muscular Dystrophy. LGMD is the preferred acronym for those of us (ok most of us) that enjoy brevity in our writing (unlike what is shown in this sentence) and does not enjoy the challenge of verbalising each sound as we plonk away at the keyboard attempting to spell really long and complicated medical words correctly; and/or really don't quite understand what each word means as it's such a new concept and therefore hard to recall the full name.

When I talk to people about my condition the most common questions that I receive are related to confusion between other neurological disorders that symptomatically seem to present similarly, their acronym is very similar and the conditions are, generally, more familiar to more people. The most popular being Multiple Sclerosis (MS) and Motor Neurone Disease (MND).