In any public place, it may surprise you to look around and consider that one in five people have a disability. Many engage less with society than they would like
Too many of my friends have told me of being abused by strangers when using an accessible (or “disabled”) parking space. Sometimes there is a note left under the windscreen wiper – “you should be ashamed of yourself, I saw you and there’s nothing wrong with you. I’ve taken your license plate and will report you”. Other times it’s a verbal aggression on getting in or out of the car.
These are friends who have a disability parking permit clearly displayed on the windscreen, but what they fail to display is a disability that is immediately apparent to others. Some of my friends tell me they respond angrily, others are fearful, many feel shaken. They tell me that they feel their privacy is being violated – the accusation of wrongdoing has the disabled person often feeling pressured to explain their incapacity to justify their behaviour.
I’ve never been personally approached or verbally abused, but on days when I feel I don’t need my walking aid, I’ve sometimes endured long judgmental stares. As much as I hate to admit this, but struck by an irrational, undeserved feeling of shame, and the desire not to be verbally challenged, I have occasionally “put on” a limp and a slower-than-normal walk in an attempt to “justify” my parking. Then I feel not only silly and dishonest, but that I’ve “let the team down”, ashamed of perpetuating the myth that in order to justifiably use an accessible facility, I must outwardly display my disability.
You know, that middle-aged woman going up just one floor in a packed lift, inconveniencing everyone else – that’s me. I can’t climb stairs. That twenty-something fit-looking bloke slipping into the disabled toilets instead of waiting in the queue – that look on his face isn’t guilt, it’s fear of being judged because he doesn’t look disabled. He has a full colostomy bag, or is having a anxiety attack, or needs a hand rail to rise from a seat.
People with disabilities are not always easy to spot. The Australian Network on Disability places the number of people who use a wheelchair at 4.4%, while the number of people with a disability is reported at around 18%. Between a quarter of men and a third of women who identified as disabled have avoided situations because of their disability.
In any public place, it may surprise you to look around and consider that one in five people have a disability. Where are they? Some are physically unable to access the community because of their health problems, including advanced age. But there is a significant number of people who choose to engage far less with society than they would like.
In my last few years of nursing practice before I retired in my late thirties, cruel synchronicity saw me working with people who were slowly losing their physical abilities and needing to take up daily living aids like accessible parking stickers, walking aids etc, while my own autoimmune disease was stripping me one by one of my ability to perform basic personal activities.
I had already spent years doing this work, and admittedly I had at times been frustrated by clients who declined the offer of aids because it made them feel embarrassed, ashamed, or it confronted them with their perceived loss of independence.
“A parking sticker and a wheely-walker don’t take away your independence”, I would opine in a sing-song nursey voice, “they help you maintain your independence and mean you can keep going out ”.
Poetic justice was dished out in spades as my disease progressed and I slowly lost abilities. Time has passed and I’ve emotionally adapted to a great extent but accepting aids is a rough ride, even without the outward judgment of others. I held back tears when I got an accessible parking sticker, but I could not control my emotions when the day came for me to buy a walking stick and a wheely-walker. I had an unstoppable teary meltdown while trialling different walkers in the shop.
Most difficult of all was acquiescing to the need to be pushed in a borrowed wheelchair for longer trips or bad days. Because I use the wheelchair only occasionally, I’m still not accustomed to “woman in wheelchair” being part of my public identity and I still feel self-conscious, but I do it because I want to spend the afternoon, for example, at the zoo with my nieces and nephews.
Losing physical ability means having your identity, control of your destiny, your self-esteem, productivity, your ability to help others stripped away. It’s a difficult enough internal process adapting to living aids at home. Taking the trappings of disability out in public means advertising to the wider world you’re a person with disability, and nothing represents disability more literally than the stylised wheelchair symbol on the accessible parking sticker.
Perhaps you are one of those, who, regardless of your age or the amount of difficulty you experience, have declined the offer of an accessible parking sticker because of the stigma that comes with lost abilities. Perhaps it is your rheumatoid arthritis getting worse by the month, or the side effects of chemotherapy making it a mission to get to the shops and back. Maybe you are fighting an internal battle to maintain your sense of identity, self-worth and value to society by declining the accessible parking sticker, the walking stick, the help with the housework.
How we see ourselves and how we are perceived by others is very closely linked. Awareness of the impacts of invisible illness is growing, and much is being written on the topic by those who endure it and by health professionals. But we have a long way to go before our community understands that we are surrounded by people with invisible illnesses and disabilities.
• Nia Sims has a disabling autoimmune disease called scleroderma. She lives in Melbourne with her mother