In some way’s it's never been easier to have a disability than in 2023. In most ways of course, there is never a good time to have a disability, but when technology and equipment are made available for the use of people with disability, we have equitable choices to help us live life the way we want.

We can sleep on beds that make sure we are refreshed as much as possible for the day ahead, and we can comfortably socialise and enjoy …

Eventually, I realised that I wasn’t sharing everyday experiences in the same way as I used to with my friends and family. Hobbies and interests such as photography, gardening, baking and sewing became less autonomous and spontaneous and more reliant on assistance from others. Conversations regarding new methods in cooking became increasingly irrelevant. Despite equipment adaptations including a lighter camera, photography and all its artistic embodiments was not available without significant compromise, including having another person programming the settings and shooting. Sewing and quilting have followed a very similar path for me. Socialising involves considerations regarding toileting, resting beforehand, ensuring accessibility and not feeling self-conscious having your food cut up for you - and significantly adapted ( let’s say improved) dance moves.

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).

Everyone loves it when the mailman arrives – sometimes more than others

There was a time when If I cried “catch me, I’m falling”, it was not because my company had induced a swoon. This isn’t a pass; it is the unfortunate effect of having LGMD. While my ambulatory skills were diminishing, getting up from the ground was one of the first abilities to disappear along with my butt, hip and thigh muscles.

Back in 2015 I’m sure a local Aussie Post delivery worker was happy to know I wasn’t trying out the damsel in distress routine to gain his attentions when he found me soaking up the rays on my friends front lawn one fine sunny day.

As a newbie to this wheelchair game, I was feeling a little reticent and self-conscious about using a beach wheelchair during our recent visit to Noosa in beautiful Queensland. It really had been ages since feeling sand and water under my feet and why else would we be at this Aussie iconic beach destination (apart from food and champagne of course, but I can get that in Melbourne)?.

We tracked the wheelchair down at a nearby hotel, and for a mere gold coin donation this rubber-wheeled jalopy was ours and I was on the pathway to salty watery freedom with a small dose of terror.

When is it time to decide that walking everywhere is no longer a viable option and using a wheelchair is?