By Erin Stewart
When I explained to a physiotherapist one day that I had heard the tell-tale pop of my shoulder dislocating after getting up from the couch, his response was unexpected: “That didn’t happen.”
He said that dislocations only occur with a sudden impact and despite my vivid imagination, my recurrent pain was clearly a result of too much desk work.
I had the X-rays to prove that it had been dislocated. I was on holiday when it happened, and the immediate rush of cold, nauseating pain was enough to prompt me to go to an emergency clinic.
I was told to follow-up on the issue when I got home because “atraumatic” dislocations could be a sign of an underlying problem.
But it was incredibly difficult to find a doctor who believed what had happened to me.
I’ve experienced joint pain, fatigue, and strange injuries throughout my life. When I mentioned it in medical settings I was told it’d get better soon: “it’s no big deal”, “these things happen”.
Some blamed my mental health (I have bipolar disorder). The brush-offs disappointed me, but I accepted them.
But something wasn’t right
This time was different though: now I had solid evidence that something was wrong and that my body struggled to hold itself together.
As I tried to get treatment for my unknown underlying condition, I began to see that I faced a more life-limiting issue: ableism.
Ableism describes beliefs that devalue people with disabilities. I had begun to suffer more from not being heard or respected than from the physical symptoms themselves.
I’m not alone in feeling the brunt of ableism as heavily as the effects of my condition.
How awareness campaigns get it wrong
It is a dynamic I know many people with autism say they experience, and especially in April — Autism Awareness Month — when autism organisations worldwide lobby for funding into autism research, diagnosis and treatment.
It’s a time that can perversely be damaging for those with autism as the focus often becomes conceptualising autism as a problem to be “cured”, at times using inhumane “treatment” such as seclusion and restraint.
Autistic children often face seclusion or restraint. This is the view of a cage where an autistic boy was kept at an Australian school. (Supplied)
Autism Awareness Month can then become an avenue to advocate for these practices, and in doing so, promote ableism as activist Amy Sequenza has explained.
Many advocates like Sequenza have called for an Ableism Awareness Month to flip the script and encourage individuals to challenge ableist attitudes and behaviours.
Ableism labels the way disability is framed in mainstream society as a problem with the disabled person.
We overwhelmingly understand disability as an individual medical problem which makes it harder for those who experience it to participate in society, and making them harder to care for.
But there is an alternative perspective that argues our world should cater for human diversity, and disability arises where we fail to be inclusive.
For instance, if a wheelchair user can’t enter a building because there’s no access ramp, it’s not their fault; there’s a problem with the building.
If a wheelchair user can’t access a building it means there is a problem with the building. (ABC News: Tom Forbes)
The disbelievers cause as much damage as my disability
In my case, it’s not my joint issues that are an obstacle in my life, but the ableist beliefs that have denied me resources and care.
After decades of health issues, I was finally diagnosed with Ehlers-Danlos Syndrome (EDS).
It’s a genetic condition that affects the way the body produces collagen.
Collagen production is complicated, so EDS can affect people in different ways. My symptoms involve recurrent joint dislocations and related fatigue.
After being dismissed for so many years I became afraid of sticking out or asking for help in case I would be seen as an inconvenience or as someone who’s “carrying on”.
So I waited quiet in queues, even when it was painful for my joints or exacerbated my fatigue, rather than ask for priority. When I had trouble walking I chose to limp or stay at home rather than use a cane.
Able ism labels disability in mainstream society as a problem with the disabled person. (Flikr: Vanessa Blaylock
No more excuses
The most empowering thing for me has been to remember that the problem isn’t if I complain. The problem isn’t the way I produce collagen.
The problem is ableism.
Because the fact is that it is my right to seek accommodations and it’s a social failure if those accommodations aren’t provided or if I’m treated with disrespect for needing them.
So now, I skip the lines. I use accessibility devices. And ask for help when I need it.
These tiny acts of standing up for myself feel radical because they go against the ableism I’ve internalised for so long.
Really though, standing out is a way of affirming that difference is okay, that having needs is okay, and that self-care is okay.
Fighting ableism is about moulding our environments and attitudes to serve everyone.
Erin Stewart is a UK-based writer and researcher.