Blog One
Focus Article: ABC Analysis
‘Why do women make up half the disability population but just over a third of NDIS recipients?’
By Sophie Yates, Eleanor Malbon, Gemma Carey and Jen Hargrave
This article (and the research it cites) provides such a valuable and relatable gender lens on disability, and how women like me l, with conditions like chronic fatigue syndrome or migraines or endometriosis, that don't neatly fit within definitions of disability, perceive themselves and are perceived by others.
According to the article "While men and women experience disability at similar rates, men are more likely to be diagnosed with disabilities that are more straightforward to gain access to the NDIS for". They found that while 49% of people living with a disability are women, only 37% of people getting formal support through the NDIS are women.
I am one of the missing 12% of women living with disability but not formally recognized or being supported for it. One of the millions of women with "painful and socially disabling disorders" (such as chronic fatigue syndrome, fibromyalgia, arthritis, etc) which are more common in women but difficult to get support for through the NDIS.
I have several of these disorders. My mother has several of these disorders. My niece has several of these disorders. My daughter is too young to know yet if she will have to live with one or more of these disorders, but she has other (dis)abilities and wonders what else may lay in wait for her.
According to the research, "Of those providing primary care to children with disability, nearly 90 per cent are female. And 35 per cent of female primary carers have a disability themselves".
My mother was a carer (for me) while managing her own cluster of "painful and socially disabling disorders". And I am a carer for my daughter. None of us - not my mother, not me and not my daughter- have received support under the NDIS.
This is because we have never applied for the NDIS - partly because of what the article refers to as the "administrative burden" of applying for the NDIS and the uncertainty of meeting the criteria with these types of disorders; and partly because, until very recently, we wouldn't have thought of ourselves as having a disability.
For so long disabled people were 'othered' and occupied a such a different space in our society (special schools, wheel chairs, sheltered workshops) that I never thought I was disabled. I managed to finish school and go to university. I got a PhD. I worked. I lived independently. I wasn't disabled.
But I did none of those things in the way a healthy, able bodied person did. I spent two years of high school mostly in my bedroom, trying to study via correspondence. We had to borrow a shower chair from an elderly relative. My older brother had to carry me to the toilet at times. I lost most of my friends.
I have never been able to work full time for longer than 6 months. For most of my working life I have lied to myself (and employers) about my limitations. I repeatedly took on full time jobs, had my health collapse after 6-months, and either resign or negotiate part-time hours. This was well before flexible work arrangements were a thing so I basically did the same workload, just some of it from bed, when I should have been looking after my health. Even now that working from home and zoom meetings are ubiquitous, I still can't easily manage my health and work. In fact, I am writing this from bed after just resigning from my job at the University of Melbourne, which was part-time and (because of the pandemic) flexible in terms of working from home.
The article goes on to say that "Support needs are supposed to be assessed according to the person's level of functioning..." but that when applying for the NDIS, "Seemingly simple questions like "does the person require assistance with self-management because of their disability?" can be difficult to answer if you have fluctuating support needs, as is often the case with disabilities more common in women."
This is the crux of my issue. And it's such a relief to have it articulated. Some days I can work and actively parent and ride my horse all in the same day. Other days I am bed ridden, having lost the ability to walk, talk and remain fully conscious.
I have been the primary carer for my now 12yo daughter and until recently, I lived with a constant, low-level anxiety of being alone with her. When she was 3 (too young to properly remember but the exact age that it would imprint on her subconscious) I collapsed in the local supermarket and couldn't tell her what was happening - that I would be ok and she was safe. It's a terrifying feeling of being "locked in" your own body - conscious and able to see the distress you are causing but completely unable to communicate with the outside world. A staff member kindly thought to grab my daughter and giver her a fruit squeezie from my shopping basket as a distraction until the ambulance and my husband could arrive. My way of thanking them was to not go into their supermarket again for several years due to the shame. And my daughter remains an only child because I couldn't face having a second human whose basic needs I couldn't consistently meet.
But some days, most days, I can parent and work and ride horses. So I am not disabled. I don't need support.
But I do need support. Lots of it. From my husband. From friends. From my daughter.
Mine is the hidden, gendered, fluctuating form of disability that has no place in the tick-the-box forms of the NDIS, but is no less impactful on me and those around me. It is the 'millions missing' from education, from contributing economically, from being seen socially.
For me, it's not about the money the NDIS may provide. It's how we as a society include and support people with different abilities. We live in an increasingly fast, stressful world that can easily leave behind those that are even just a little slower than the average person. They say we can't manage what we don't measure. Measuring and recognising the gendered and more fluctuating forms of functional disability is vital for people that are currently hidden, living with the shame of not keeping up with the able bodied expectations they and those around them hold, and lacking the support they need to succeed at life.
3 February 2022