This was published in September 2019 at Inform online.
Thanks to editor Kirby Fenwick for the opportunity.
There are a few things in here I wish I’d known decades ago, especially about other people’s ableism.
Liz Hall-Downs has learnt a lot from disability advocates. Here, she shares her experiences with online disability advocacy communities and what they taught her.
Those us living with disabilities, both visible and invisible, know it’s not easy being different. Society has a vision of what ‘normal’ is, and when you don’t conform it can be hard to move confidently through the world.
I have Rheumatoid Arthritis, an autoimmune disease that has impacted every area of my life since my diagnosis at age twenty.
The first few years were very challenging as the disease rampaged through my body, taking functional joints with it. Pain became my constant companion. Having good doctors who listened to me was the difference between adequate treatment and being a pain-wracked cripple. I had to learn advocacy, and fast.
We all like to think we are ‘nice’ and that we treat others kindly. But the truth is that other people can be very harsh judges of things they know nothing about. Having a disease that frequently hits young women, and that is essentially ‘invisible’ till the damage to the body has been done, was hard for other people – even those close to me – to comprehend. ‘But you’re so young!’, they’d say, as if youth and poor health couldn’t possibly coexist. It was isolating to be in such severe pain and surrounded by people who just didn’t understand.
I’d been sick for over a decade when the internet happened, and I finally found a support group for people with my condition. I hung out there for several years and learned a lot from other members. Not just about the disease, and its manifestations and treatments, but also advocacy.
With active Rheumatoid Arthritis, as with all chronic conditions, a good quality of life is not possible without adequate treatment and pain relief, so being able to clearly communicate our needs is really important. As is having a doctor who knows our case and is sympathetic to our suffering. A willingness of both doctor and patient to collaborate on managing the disease is also critical. You need to be able to really honestly communicate.
My online support group friends taught me many things:
- If you’re not happy with your doctor, find another. You wouldn’t tolerate poor service from a plumber, you’d shop around. Don’t be afraid to apply the same logic to your own medical care.
- It’s okay to ask for pain relief, it doesn’t make you an addict. And needing treatment doesn’t make you lazy or a burden. Sick or well, you are a human being and you have intrinsic value.
- Depression is a normal part of chronic illness. So is financial stress, worry about the future, uncertainty, and feeling useless. But we can’t just wish the illness away, so we need to find ways to live well with it.
- You could be on your deathbed and some people will still claim you’re just ‘lazy’. Some people simply lack empathy; it’s best to avoid such people.
Diversity is strength
I follow various disability advocates online, such as Carly Findlay, Imani Barbarin, and Rheumatoid Arthritis Guy. They report from the frontlines on how they ‘do life while disabled’ and remind me that bodies are diverse, and so are the ways we live in them. They remind me that diversity is strength, and that there are times when you need to be tough and stand up for yourself, even if it makes you unpopular.
In those moments when I feel tired of being pitied or held up as ’inspiring’, I watch the late Stella Young’s viral TED talk about inspiration porn and laugh along with her.
Because we are not just our conditions and physical limitations. Stella was a lawyer, comedian and radio host, as well as a wheelchair user. Imani is an academic and writer. Carly works in arts administration and as a public speaker. RA Guy has used his PR skills to create a warm and friendly information hub for people with RA. Dylan Alcott’s rise to national prominence has been on the back of his skills as an athlete and his impressive media savvy; his wheelchair really is the least interesting thing about him.
For myself, I have assumed multiple identities, as a blogger, as a poet and performer, as a musician, and as a parrot keeper. My RA is part of me, but it doesn’t define me.
Out, loud and proud
It’s time for society to ditch the pity model and see people with disabilities as we really are. But for this to happen, we need to be visible in our communities, to be out, loud and proud. Yes, we may have disabilities, but we also have ABILITIES, and these need to be used.
We’re here, we have much to offer, and now, with technology, we can advocate more effectively, for ourselves and for others. And hopefully this will eventually lead to less discrimination and more mainstream jobs for people with disabilities.
Liz Hall-Downs is a writer, poet, musician, and parrot lover, who has lived with disabling Rheumatoid Arthritis since her youth. She lives on an island in Queensland’s beautiful Moreton Bay. Her published books, articles and blogs can be viewed on her website, at www.lizhalldowns.com