Two weeks ago, I was asked what I did for a living. I answered that I was on the Disability Support Pension, and that my husband was on the Carer’s Payment. It was humiliating. I felt as though I had no worth. He did not ask what volunteer work I did, or how I spent my days, or what my hobbies are. And I do not buy into the idea that he wanted to know where I got the money to pay for my groceries. He wanted to know who I am, and we do that in our society by first asking what someone does for a living.
Employment (or the lack thereof), can be quite a contentious issue at the best of times. It becomes even more so when it comes to the subject of people with a disability and employment.
“Sitting on my arse, stealing taxpayers money in the form of the disability pension” is usually what people seem to hear when I say “I’m on the Disability Support Pension”. Either that, or they start speaking really slowly. It is quite annoying. And depressing. And humiliating.
We’re Not Here For Your Inspiration by Stella Young was an excellent article that I think is relevant to employment as well as one’s general attitude:
The statement “the only disability in life is a bad attitude” puts the responsibility for our oppression squarely at the feet, prosthetic or otherwise, of people with disabilities. It’s victim blaming. It says that we have complete control of the way disability impacts our lives. To that, I have one thing to say. Get stuffed.
People see one person with a disability and assume that if they can do it, then all people with a disability should be able to. People see one person with a disability be gainfully employed, and assume that if they can do it, then all people with a disability should be able to. And this assumption is incorrect. Some people with a disability cannot work because they are simply incapable of doing something (or anything) for a minimum of two hours (the minimum hours allowed as a casual).
Most people with a disability are incapable of working because the specific conditions they individually need in order to be able to work are considered “too great” by the wider community. It is “easier” and “cheaper” to pay them a pension, keep them at home, and tell them to shut the fuck up and stop complaining.
That doesn’t sit too well with me. Mainly because while it may have been true that when I was working, I would have loved a full-time holiday, the reality is that so much of our identity is wound up in our “profession” (whatever that may be), that for some of us at least, the idea of not being employed does our head in. I want to be employed, and I do not feel that it is too bold to ask society to make a few concessions in order to facilitate this.
It also doesn’t sit well with me because of society’s attitude that people with a disability should be working, while at the same time, society refuses to employ people with a disability. Take these comments:
Its [welfare, particularly, the disability pension] theft, pure and simple, if you prefer, its socialism, pure and simple. The number with their hand out will continue to grow, taxes will have to follow, its a no brainer. Just to be clear, I am not responsible for you and yours, YOU ARE, you want me to be responsible because you cant afford to be. (Silken, 2012)
I earn reasonable income working 5 days. But its hard go, end of friday feel like a squezzed lemon. But I think I am stupid to sweat out 5 days- 50 hours a week. At this rate I will end up with disability (already with fatigue, pains and aches) might as well cut down to 3 days and some how manage with reduced income and enjoy a bit of life receiving all these goodies.. Low income tax, NDIS etc all well paid by others.
This what will ordinary people driven into. Oh well socialist nanny state it will be! (John, 2012)
the title says it all, everyone has a sence of entitlement
what happened to the world not owing anyone a living? (Poiter, 2012)
Quite clearly, these people do not believe that society should be responsible for people with a disability – that people with a disability should be responsible for themselves (or that “burden” should fall to their family, assuming they have any who are willing and capable to take it on).
This is fine in theory, however disability employment rates are lower for people with a disability (54.3%) than they are for people without a disability (82.8%). Do people really believe that this is because people with a disability are lazier in nature?
In order to be employed, I need the following:
1 Transport to and from work. There is only one taxi in town that takes wheelchairs, so I may not always make it to work on time.
2 Some help at work. I will not be able to push my wheelchair up any inclines due to the probability that I will dislocate my shoulders, wrists, and/or fingers. I will not be able to reach anything high some days (though some days I will be able to stand and walk at times). As I will most likely not be eligible for a paid carer to help me out, I will need my co-workers to pitch in.
3 I will need an accessible workplace. Ramps, enough room to manoeuvre a wheelchair and an accessible toilet.
4 Understanding. I need the people I work for, and with, to understand that just because I could write with a pen at 10am does not mean I will be able to do so at 2pm. My work hours will need to be continually flexible. And I will need more breaks than most people in order to “warm up” my joints, or rest my joints.
5 Part-time employment. I simply require more time off on a regular basis than is reasonable to expect of a full-time position.
It has been explained to me by disability employment services that there are simply no employers in town that can provide these concessions.
Although I have had Ehlers Danlos Syndrome all my life (it is a genetic condition), I was only diagnosed this year. Thus, before this year, even as I deteriorated, I held out hope that I would one day “get better”. All I needed was to find out what was wrong and fix it. Instead, I found out what was wrong and realised that there is no cure, and that it is condition that usually deteriorates. I am still hopeful of at least getting to the stage where my condition stagnates however, with the right help from physiotherapists, nutritionists, occupational therapists and the like.
It is this resilience to giving up that led me to decide last night that this whole idea of “being employed” may well be a pipe dream, however that does not mean that earning a living is.
I love to write. I love to talk. Surely, I can pave my own way in the world by imparting my wisdom to others who want to hear it by writing and talking, and who are prepared to pay me for my time and expertise?
(For an excellent video on why people with Autism (though it is relevant for all disabilities) should be paid to give presentations, and why they are the most expert of all the experts, see this by Rudy Simone, author of Aspergirls)
I do not feel that it is too bold to ask society to give people with a disability the concessions they require to work. I do feel however, that we are a long way from achieving this attitude in the wider community, and until such time as society catches up with the idea of a “fair go for ALL”, then we will just have to think outside the square and do our own thing.
Perhaps my idea will work, and perhaps it fizzle along with what little is left of my dream to be a self-funded retiree. Until all hope is lost however, I shall start to answer “what do you do for a living?” with “I’m a writer and speaker”. Because they don’t really care where the money comes from to pay for my groceries – they want to know who I am – and I am exactly that, a writer and a speaker, whether I am currently being paid for it or not.