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By Mollie Purvis
Since I was five years old I’ve been in an electric wheelchair. I was born with spinal muscular atrophy type 2 (SMA2), which is a rare genetic disorder characterised by weakness and wasting of muscles.
I can honestly say the hardest part of having a disability is not the disability itself, but the world around you that does not always cater to your differences. When you live with a high care disability you’re accustomed to adapting to difficult surroundings.
Unfortunately, this causes many of us not to speak up when we need to.
As a wheelchair user growing up in rural Victoria, I always expected the bare minimum when it came to disabled access. From my experience, such access considerations usually only included the occasional precarious lift. You can imagine my surprise when I moved to Melbourne and found I was within my rights to expect simple amenities, such as a public place where I could use the bathroom.
I adapt as best I can. My chair can rise to the height of a bar (useful I know), and my chair can recline to make going to the hairdressers and the dentist much easier. I also carry a telescopic stick in my handbag in case of any inaccessibly high lift buttons.
However much I prepare myself, it is almost certain that a brick wall may arise at the most inconvenient time. One that might restrict me from staying out an extra hour, or going to a music festival with friends.
One thing I am sure of is that people genuinely want to help – they just don’t always know how.
As someone who cannot weight-bear at all and has limited strength, the phrase ‘accessible bathroom’ has never brought me much joy. Theatre attendants are always so chuffed to tell me they have an accessible bathroom, only to look confused when I explain I’m unable to use their facilities. I require a hoist and an adult sized changing table to be able to go to the toilet.
When I first discovered Changing Places toilets, I felt that all my Christmases had come at once! Changing Places provide suitable bathroom facilities for people who cannot use standard accessible toilets because of severe disabilities. In fact, they specialise in toilets that require a hoist for transfers – just the kind I need. This includes a height adjustable and adult sized change table, a ceiling track hoist system, a centrally located peninsula toilet, and adequate circulation space.
Once I knew about Changing Places, I couldn’t go back to my old reality – I wanted this to become my new normal.
Before a Changing Places toilet was installed at my campus in RMIT, I had to travel four blocks to the Carlton Dental Hospital to use their one. It wasn’t ideal, especially on a cold winter day or when I just wanted to enjoy a relaxed lunch break with friends.
Once my university installed Changing Places facilities, my whole experience changed and was much more accessible – and enjoyable. Today, RMIT has four Changing Places toilets throughout their city campus in the Melbourne CBD. I’m glad that others who previously experienced the same challenges I did can benefit from the introduction of these facilities on campus.
But RMIT isn’t the only institution leading the charge when it comes to increased accessibility. The Australian Open has also installed Changing Places facilities at Melbourne Park. Once they did, I could more easily attend the tennis with friends. I could even enjoy as many Aperol Spritzes as I liked without worrying about how long it would be before I could use the bathroom. I’ve heard terrible stories about people dehydrating themselves, just so they can enjoy the simple experiences most of us take for granted.
While these are very welcomed changes, there’s still a lot of opportunity for other places and organisations to improve their accessible facilities and access points. It’s all about listening to what people need and all of us doing our best to make it happen.
Considering my lived experience, I suggest the most beneficial location for Changing Places would be heavy foot traffic areas, especially those that are accessible 24/7. These would be locations such as train stations, hospitals, libraries, and shopping centres.
As a society, we need to understand that living with a high care disability means adapting to tough realities. We are so used to adapting that we often don’t get the chance to speak up about it. It might seem like there isn’t enough of us for people to notice, but many people would use Changing Places facilities if they did exist.
If you build it, they will come.
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