Amidst the global awakening to systemic racial oppression, there remains a deafening silence around the oppression of people with disabilities. Disabled people are disproportionately affected by financial difficulty at the hands of systemic inequity, accessibility (or a lack thereof), and overall discrimination in multiple aspects of their lives.
Census data has shown that for every $1 an able-bodied person earns, a disabled counterpart only earns $0.66cents. If you’re wondering how that’s possible, remember it’s not just about salary on a literal level. It’s a combination of the costs associated with living with a disability, the lack of opportunities in the job market, discrimination in managerial and C-suite positions, barriers to entering the housing market, and the distinct crapness of the disability support pension. In fact, a study in 2017 on people in the arts discovered that artists with disabilities earned 42% less than their able bodied counterparts.
I spoke to my good friend Elle Steele, who was born with a rare disability called Arthrogryposis Multiplex Congenita, alongside a hand abnormality and clubbed feet. Elle’s insights into what it’s like to live as a woman with a disability shines a light on how systems, buildings and opportunities are designed only with able-bodied people in mind.
Elle was born with her disability. All three conditions were mutually exclusive of one another, and medical professionals have been unable to find a specific cause. “If you’re born with your disability, you’re on your own,” Elle explains. “My parents paid for thousands and thousands of dollars worth of medical bills for me, but not everybody has that support, so in that sense I was really lucky.”
Arthrogryposis Multiplex Congenita is a complex condition, which means Elle has had 35 surgeries in as many years, including a triple fusion on her ankle and two separate knee replacements in the last ten years alone. Each time she had to learn to walk again, enduring painful hours of physio and rehabilitation – which, of course, means time off work. Plus, she’s now fully reliant on her wheelchair to get around in daily life. “My wheelchair cost about $21,000,” Elle said, “which is a cost that able-bodied people would never have to consider.” We all live with some level of worry of incurring an unexpected bill, be it car repairs or perhaps a burst water pipe, but people living with disabilities face the financially worry of being able to manage their pain and pay for assistive equipment, too.
Sick leave ignores people with disabilities
“When I worked at one of the Big 4 Banks, I had my ankle surgery, and it wasn’t just the surgery, it was all the appointments leading up to it and all the recovery afterwards,” Elle said. “I had to use all my sick leave and all my holiday pay, and even then it didn’t cover the whole period I needed off for that one event.”
Elle notes that what able-bodied managers and coworkers can’t relate to is the sheer physical effort and time involved in getting to and from appointments – and the exhaustion that ensues afterwards. “I have to push my wheelchair out to my car, get in and out of my car, dragging the chair into the boot with me, into the appointment, back out again, and get back to work. That in itself takes much longer than an able-bodied person, and besides that, I’m exhausted by the end.”
As able-bodied people, we’re naive to the complexities of living with a disability. When we see people in wheelchairs, our minds jump to things like stairs and going out to clubs and traveling – all the things that would become more difficult. But living with a disability adds on a whole new layer of complexity. “The chronic pain is what people don’t think about,” said Elle. “Working for someone else is so hard because of the pain.”
The reality is, traditional business structures just aren’t built for people living with disabilities and the associated chronic pain. Most able-bodied people can make 10 sick days and 20 holiday days work with a strategic mix of a wedding, perhaps a funeral, a bout of the flu and a couple of weeks in Bali. For Elle, sick leave and holiday leave is sucked up by the mental and physical exhaustion of day-to-day life with a disability. Throw in a surgery and it’s just not possible.
Accessibility of buildings is a major issue
And that’s not the only way businesses aren’t built with people with disabilities in mind. “When I was in my 20s, I got offered an interview at an amazing PR company,” explained Elle. “The hiring manager was so excited about my CV, and asked me in to chat. I hadn’t disclosed my disability because I’m not obligated to, but when I asked if the building was accessible, she said it wasn’t.”
Accessibility in the workplace – and everyday life – makes employment incredibly difficult for people with disabilities. Shrinking the job opportunity pool drastically, those who require wheelchair access or other assistive features are stuck navigating an already-tough labour market, which has a knock-on effect on their financial confidence.
Working from home: suddenly it’s all possible
Something that’s been drastically overlooked amidst the Coronavirus pandemic is that virtual working has all of a sudden been made possible – despite people with disabilities being denied such privileges for decades. “I had one employer who would always question what leave I was taking, and wouldn’t let me work from home because she wanted to keep an eye on me,” Elle said. “We’ve been asking to do meetings on Zoom and communicate remotely for years and the answer has always been no. Now that it directly affects able-bodied people, it’s possible all of a sudden. It’s a real kick in the guts,” she continued.
A tough housing market made tougher
If workplaces aren’t designed for people with disabilities, it comes as no surprise that the housing market isn’t, either. “Unless I wanted to live in an apartment block and risk the one lift breaking, it was pretty impossible to find anywhere,” Elle said. “You’re so limited in what you can buy because there’s so little available that’ll actually suit you.” People who require specific access features are not only faced with less choice in an already-inflated housing market, but may also need to face the costs of making structural modifications.
…and then there’s the insurance
Health privilege intersects with financial privilege in ways many don’t consider. How many times have you jumped online and booked travel insurance meer hours before you head off to the airport, knowing that it’ll be a clean sheet of crosses on the existing conditions questionnaire?
People living with disabilities face exorbitant premiums when it comes to health insurance, life insurance, TPD insurance and travel insurance – yet they’re not earning more. Go figure.
“My car insurance gets expensive, too, if I want to insure my wheelchair which is always in the car with me,” explains Elle.
Less income, less opportunities, higher bills and higher costs of basic needs. Seems fair, right?
But wait, don’t disabled people get loads of money from the government?
You might assume that a person with a disability who incurs thousands of dollars in medical bills would get sufficient support from the government. Surely, it’s only fair, right?
Well, not exactly. Thanks to the introduction of the NDIS in 2016, things are substantially better than they were. That said, Elle has lived with her disability for 36 years, and only received her first NDIS payment in October last year. “The NDIS has really changed my life,” she says, having explained that previously there was no support for 35 years and thousands of dollars in medical bills. “It’s given me independence that I’ve never experienced in my life.”
The NDIS is funded by the Australian Government. If you’re picturing ScoMo’s face and wondering how on earth that’s possible, this was introduced when Labour was in power. Ahh, there we go. The NDIS assesses people with disabilities each year, and gives them the opportunity to explain what funding they’d need for their lifestyle. Things like help in the home, help at appointments, medical bills, costs of modifications to the home, things like that. Then you’re given an allowance based on what you’re approved for from the things you’ve asked for.
Sounds good in theory – and it is, in many ways. The issue is that this is assessed every single year. Applicants have to go through the rigorous process of proving their disability exists year after year. Just in case, you know, they woke up one day and their disability had just vanished into thin air. I’m joking.
There is the Disability Support Pension, but much like the government’s pathetic excuse for other aspects of welfare, the DSP is “honestly barely worth bothering with.” Like other Centrelink-provided payments, access causes applicants more hassle than it’s worth – and this stress and hassle is only exacerbated for those with disabilities. Statistically, 45% of people with disabilities live below the poverty line, compared with 27% of able-bodied people.
The maximum a person with a disability can get on the DSP is $944.30, but like many aspects of welfare, it’s not as simple as that. If you have an able-bodied partner you’re often exempt, if you work full time you’re often exempt, oh, and if you take a holiday overseas for more than four weeks, your payments are cut off. Because, oh yes of course, your disability goes away when you’re overseas, remember? Cute. Oh, and while the able-bodied JobSeeker payment was doubled when COVID-19 hit, the payment to those with disabilities didn’t. That said, DSP recipients were eligible for the $750 stimulus payment.
Elle was also a victim of the recent Robodebt scandal in Australia. For anyone unfamiliar, in a nutshell, some very questionable ‘averaging’ software was used in an attempt to recover welfare overpayments due to processing errors. The result? Thousands of people issued bills for money they never overpaid. *crowd applause*
One could argue that women and people with disabilities were magically disproportionately affected by the Robodebt issuances – but we’ll never really know. Of the sample of people I know who have claimed welfare at some point in their lives, everyone who received a Robodebt notice was either female or had a disability. The men I know received no such notice. Coincidence…?
How to be an ally to people with disabilities
I asked Elle about her experiences in the workplace, and how able-bodied people could be better allies. It’s worth noting here that it’s not the job of minority groups to educate us on our ignorance, but I’ve known Elle for years and she was happy to share her thoughts.
“A lot of it is about assumptions,” she says. “People make the assumption that you can’t do things, but they’re happy for you to go above and beyond. It’s like they’ve already decided that you can’t do things or that things will be too hard.”
A rather current example of this is the US Open, who unceremoniously announced that the tournament would go ahead without wheelchair tennis. Dylan Alcott spoke out, explaining that whatever the reasonings were, nothing should replace the perspective of the people with disabilities themselves.
“Communication is really important,” Elle adds. “It’s a spectrum. The way you’d speak to someone in a wheelchair isn’t the same as the way you’d speak to someone with a mental disability. We learn to communicate with children in all different ways, even when we don’t have a clue what they’re saying – yet people don’t apply this same logic to speaking to people with disabilities.”
“Just talk to us. There doesn’t need to be a handbook or a manifesto on how to speak to someone in a wheelchair.”
When it comes to being a workplace ally to people with disabilities, affording them the flexibilities they need to be able to work in a way that’s right for them is really important. Elle explains that when she had to have time off for knee surgery, she could’ve easily worked remotely from her hospital bed, but for many, this isn’t offered.
“My disability isn’t a problem for me, so it shouldn’t be a problem for you,” Elle said, neatly articulating the need for a level playing field. When it comes to hiring, leave the communication open for the applicant to explain in their words what their disability may mean for the role. “Don’t make it a case of box ticking what they can and can’t do,” Elle said.
“In your personal life, take a hard look at your instagram feed. Are you following anyone who isn’t able-bodied?” she questioned. “Do the same at work. There’s a misconception that diversity means cultural diversity only. There needs to be a focus on diversity of all kinds, including ability diversity.”
Recommendations for creators with disabilities to follow:
Elle herself, OBVIOUSLY! @iamellesteele
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