Clara with Abrams at Postmodern Jukebox in 2016.
I suffer invisible dis/Abilities and most of the time I could probably pass by undetected in the population who don’t count their days by the humble spoon; though in Australia, 1 in 5 people are termed “disabled”. Like many people with disabilities, I was born with some but acquired others as I got older. In the Western world, most people with disabilities don’t actually get diagnosed until they are in their teens and early twenties, the probability increasing with age. And accidents happen all the time, it could happen to you and I consider you to take the position before you dismiss the following.
Most people are civilised enough to make way for someone with obvious impairments to mobility and sight or accomodations for a condition like asthma, but if you are like me living with invisible dis/Abilities, you often see the very best and the very worst of human behaviour. Like a rip tide just because you can’t see it, doesn’t mean it’s not there and it’s not devastating to live with the consequences of it.
This week, I was at Flinders University doing an intensive archaeology course in human osteology, and while I can state without hesitation that we absolutely without a doubt have the best support at university in the country from our Disability Officers and academic staff, in my experience, the rest of the university population were simply the worst and exams doesn’t excuse it.
So instead of complaining about what I suffered, I’m going to make a few suggestions about how you can make a few simple changes to your behaviour that don’t ask anything too onerous of you and enable people like me to get by without having the soul crushing experience of having to disclose or ask you to change:
• Situational awareness – be aware of what is going on around you. Someone like me who suffers chronic pain and has bandaged hands really appreciates it if you hold the door a second longer so it doesn’t slam in our face. It’s just good manners…
• Give people on elevators and escalators room to alight. You can’t get on when the occupants of the previous journey haven’t departed and also make room once your on the lift to accomodate other people. I’ve never met someone who is as big as the lifts at university!
• Respect my personal space in crowded situations. There are many ways to be a good citizen in cramped peak hour public transport – it won’t kill you to put your bag on the floor or give me a better handhold if I ask for it because saying I’m clumsy is easier than explaining living with chronic pain to complete strangers who have read on the internet that fibromyalgia isn’t really pain because pain is sensed in the brain so I’m not really in pain I just think I am. Yes, this happened…
• Believe my condition is real. I’ve actually been to several specialists with years of experience before receiving my diagnosis and I have only started on medication this year that doesn’t provide complete relief from my neuropathic pain despite what you’ve read off a science feed on Facebook.
• Also don’t offer me cures you’ve read about or know helped if I mention the diagnostic label of my dis/Ability. You’re not a doctor and more importantly even if you have a medical degree, you’re not my doctor.
• Understand if I mention I’m low on spoons in any conversation, I’m talking about spoon theory. I’m not obsessed about cutlery, I’m not feeling well, I’m unable to fully function or I don’t have the energy to do everything I need to do today or let alone do in a day. It’s not an opportunity to discuss spooning on Facebook messenger which might be the only contact I have with people that day (true story).
•Know I’m doing the best I can and don’t diminish the effort I’m trying to participate in society. Know that undertaking a masters degree is my primary occupation and I’m paying fees to do it. Understand that I have limited functionality and to me my time is precious so I’m going to prioritise it above everything else including my laundry but I’m not going to miss out on showering and eating because I’m volunteered and ran out of energy. If I haven’t done something, it’s not that I’ve forgotten or I don’t feel guilty but that something is preventing me from doing it. Like the choice between basic maintenance or intellectual labour.
• If I talk about my disabilities, I’m only human and need to vent, so just listen and don’t try to fix it. Especially with politically correct bandaid solutions. The world for me with my bandages under my clothes is like being a cyclist in a world whose default status is designed for cars. I am at a genuine disadvantage a lot of the time and you can try to change what you can in your own sphere of influence, but I’m allowed to call society out on it until I’m equal. Equality and accessibility for someone in society is making accomodations for the least abled as your basic line of inclusion.
• If I ask you for your seat or I’m sitting in a disabled space, assume I need it and believe me when I ask for it. Ask me if you think I’m being too polite to ask you as I’m swaying and I’m facing the choice of asking you and your kid or the elderly woman at the bus stop because I’ll sit anywhere right now including the gutter because I haven’t got a choice. It is not easy to pull yourself out of the gutter when there is no where else to sit and one person is dominating the space…
• Give me the tools to participate as fully as possible. You’ll be surprised what we can achieve together, enabling me isn’t giving me an unfair advantage. All it proves is if you give anyone the right toolkit to succeed, they tend to succeed.
• When presented with an opportunity to make a better choice, take the better choice. I try to be the person I need in society and it’s not natural at first and it can feel like you’re stretching but eventually you fill that personal vaccum with the actions you made in changing the small bit of world around you.
Clara Santilli, 4th November, 2017.