I was born with AMC (Arthrogrophosis Multiplex Congenita) which pretty much means my legs didn’t grow enough muscles and my bones became crooked, backward and extremely gnarly in utero. For a good part of my life I managed walking with two long calipers and a walking stick.

I would take to the wheelchair for long journeys only when it was impossible for me to keep up with or have the energy to walk for miles with the ableds. As time when on and as I inevitability aged my wheelchair using became more prevalent. It could be said the occasionally wheelchair using on a recreational basis indeed become a gateway to full time wheelchair use.

I actually didn’t know I need a wheelchair until one particular shopping trip where I lagged behind my sister and mother so slowly that my sister said ‘right let’s go and get you a wheelchair, this is just torture’.

So our next stop was McCleans health care in Launceston and my mum paid $600 for a Karma lite for me.

I will never get over the name Karma. It’s like who in their right mind of marketing thought calling a wheelchair Karma was a good idea?

I do have to digress though and admit I had on quite a few occasion prior this hired wheelchairs when we went to Melbourne or other larger cities. My daughter at first would ride on my lap with my husband pushing us both over the cobbled streets of Melbourne to get to his favourite Italian restaurant in Lygon Street.

Later my daughter would take on the duties pushing around the big department store and all the shops she wanted to visit whist my husband would decline the invitation to join us and say he would meet us back in a couple of hours. I remember fondly sitting in a stationery shop for what seems like days while she choose the pencils and rubbers she most wanted.

On one particular shopping adventure I remember seeing a teacher that I worked with at home. The shock on her face to see me in a wheelchair was very much in evidence. I concluded from this: 1. She thought that I didn’t need the wheelchair? 2. How could I make my daughter push my lazy bum in said wheelchair? 3. Only people who use a wheelchair permanently should use a wheelchair.

I also remember at a conference I was in my wheelchair but I needed to go to the loo so I got up and walked on calipers and stick the 15 metres to the loo. The faces on some of the other conference attendees was priceless. Like hallelujah a miracle she can walk or the opposite, bloody faker.

Interesting fact not all wheelchair users can walk but a great many of us can walk a bit. Its not likely that any of us can walk more that 50 metres without requiring rest and a good sit down or in many cases a good couple of days lie-down or more extreme a visit to the hospital for some pain meds and oxygen.

So now the story really begins on my wheelchair journey and the interactions of chairs that I have had.

As I said before my first that I owned was the Karma lite and it was decided on because of its weight of 7 kilograms. It was so light and easy to fold that it fitted in small hatch-backs and could go any where. It had a rough life I’m afraid.

It was once used as a carry seat with four strapping young lads carrying me through native forest to attend a concert, over logs and up hills and down into a nature amphitheatre, all in the dark.

Terrifying for me but also exhilarating; my chair with some extra helpers could go anywhere it seemed. I was Cleopatra for a night.

But alas there are places that it cant go, well it can but not for long term and taking it into the sea one too many times saw Karma succumb to karma and eventually rust and make its final journey to its resting place at the tip.

Karma was great but with a young family and other financial pressures and the fact that I had to pay for a wheelchair myself no government support or NDIS back then I bought The Red Devil or Old Red from eBay for $289 with free postage. Cheap and nasty comes to mind now looking back at Old Red. You know the saying ‘you get what you pay for’? Well in this case it was so true.

Old Red was a wonky donkey, a bit unstable and prone to undulate internally on unstable ground which gave me the sea sick feeling and my backside the feeling it was rocking on the high seas. Thankfully Old Red didn’t get a lot of use as at this time I have found that an electric scooter gave me much more freedom. I didn’t have to rely on someone else to push and my range was increase to 20 kilometres from home. I could hop on my scooter and off I’d go for the day. I even used scooter in the classroom when I went back to work for a 6 months.  I still love my scooter and in most instance it is my first choice. She goes on buses and tram and planes and is well travelled.

Old Red was relegated to beach duty, and alas the fame fate as karma befell Red, the rust. This summer was Red’s last big swim. As I bobbed around metres from shore with my daughter and our friend we looked back to see Red trying to drown himself in the surf, being pushed and pummelled around in the foam, being dragged further and further out.

We did rescue him as I need to be transported back to the car but this was his final journey and soon after he followed Karma to the final resting place, the tip.

This left me down a mode of transport for the beach and it was now with NDIS funding I could reach for my dreams and purchased a purpose-built wheelchair for the beach from the USA. This wheelchair – Beach Bertha as I call her – has big bulbous wheels and is a nightmare to steer on land more like a unwieldy fat elephant on a mission to bulldoze anything in its way. Beach Bertha has issues!

She cost like $2500 and where on land she is a bulldozing elephant in the sea she’s like a bucking bronco, trying to fling me out at any opportunity as the sea swirls around us. She takes some taming this one and I’m not sure our time together will be long. But she serves a propose at this time and so until something better come along bucking Beach Bertha will have to stay.

So I had the beach sorted with Beach Bertha. I have long escapes into town and beyond covered with scooter. However there are times when I just want to go to a restaurant or play and sit in a comfy wheelchair that is self-propelled and light. That’s where finding the right fit becomes tricky.

Now that I am on NDIS. I can buy something that’s not cheap and nasty so my expectations are higher and so I set about finding the perfect chair for me. But guess what, I didn’t have an occupational therapist (OT) or a script. Most wheelchairs (the real ones) need an OT to measure and script the occupant for size and particular needs. That take time and in Tasmania at the moment you are more likely to win keno than find a OT within 6 months.

I didn’t want to wait that long so I used my research skills and did a lot of scrolling and measuring of myself and finally found a place that would sell me an Otto Bock from eBay but they seemed a bit resistant without proper measurements and in the end the sale fell through.

I was devastated but not undeterred and continued my search. I found – drum roll please – … Big Blue. Big Blue cost $1980.00, is lightweight, self-propelled and has pump up tires. I am currently in Hobart and Big Blue has been used continuously to transport me to the loo and back to bed hundreds of times with such ease I cant believe I didn’t have Blue in my life earlier.

I usually crawl to the loo and it’s hard work! All you ableds out there should try it.

Get on your bum and sort of bum shuffle using your arms to scoot around or alternatively like I do get on your fragile little legs and teeter along on all fours, its not glamorous and sort of drains the dignity and the energy out of you after doing it for years but hey, whatever gets the job done!

But now I have Blue and Blue I do love you (for now until my next love comes along).

Many people with disabilities use multiple devices for mobility: shower chairs (which I didn’t mention but yes I have one of those too from Bunnings of course), electric scooters, electric wheelchairs, self-propelled wheelchairs with handles for those who need an extra shove and self-propelled without handles for the more independent or belligerent amongst us.

I’ve got it all and so do many others and our homes look like mobility showrooms, a bit like rich old men with car collections but instead of choosing a different car to go out and impress the punters we choose a mode of transport for the type of activity we are getting up to.

So I guess the moral of this story is layered.

1. You get what you pay for but really I think Karma is a bit much and the name is really a bit unsavoury for the job they do. Disability is not a karmic experience.

2. The journey is never over as you can see from the interactions of modes of transport I have used over the years to simply do the job of transorting me in the most comfortable, speedy and dignifying way possible.

3. Don’t judge a wheelchair or a wheelchair user. If you don’t use one you don’t need to have an opinion.

4. And I guess that last message is that the speed in which one person can purchase and utilise their mobility needs in a timely fashion speaks to the void in services and the need for services. NDIS protocols and Occupational Therapist delays means that people like me have to be inventive and resourceful in getting our needs met expeditiously.

Tammy Milne is a deaf interpreter, a community activist in various fields and a person living with Arthrogrophosis Multipex congenita.