A Carers Tale

imageWhen I post stuff about disability, people who don’t know me will ask if I have a disability. People who know me don’t ask, but probably wonder quietly.

The answer is no, and then yes. I have narcolepsy with cataplexy (google them if you like the details are not critical here). I was diagnosed around ten years ago. I didn’t think I was disabled, but it was kind of like being prescribed with glasses, putting them on, and going “oooohhhh that’s what everybody else sees? Wow, I AM short sighted.” Medication generally works like glasses, it just adjusts things, and functionality is restored. A

ll good.

I care for someone with a disability. And I mean that in the sense of take care of, not care about. Even “take care of” is patronising, but I don’t know another phrase that would work. (Once again not critical for the moment). She also managed pretty well, although that fluctuated, over the years.

The time came when, after twenty years working, mostly full time, and as a single parent, I had to stop. Many little things, but the last straw was the local bus. It ran from near her school to near our house. It was wheelchair accessible, at least about half of them were. Problem was, at the times she needed them, the accessible ones were often full. A few walking passengers could squeeze on, but not someone in a wheelchair.

So she would wait, and wait, and wait, accessible and full, inaccessible, and etc. An hour, maybe more. In the rain, in the cold, her broken spine freezing and sending muscles into spasm. She tried taxis, but they would not necessarily show up, and the outcome was often the same.

So I had to stop working. It seemed like the least I could do, and it would only be for a bit, till she finished her VCE, and then we would work out a plan, and things would return to normal. Thing is, all those years, we had been buying our way out of the disability nightmare. Need something that has a waiting list of twelve months? Buy it. No surgical solution that will prevent her being bed bound for the rest of her life? Fly to Hong Kong to consult with a surgeon who can provide new insights to the team here. And so on.

Ok, so despite a professional job, we never had any money that way, but the wheels kept turning. Sure, there was the time when we were made homeless for five months because there were no wheelchair accessible rental properties near any of the things that were important – her school, transport etc. But money would not have changed that. (Ok, correction, it would have if I could have saved the money spent buying our way out of it and purchased a house, but besides that.)

Then the rods holding her spine together snapped. The waiting list for surgery was long, but worse than that, the prospects for rehabilitation were zero. A wait of at least eight months, during which she would need to remain in hospital, doing nothing, and getting worse, and then no promises. And so on.

Twelve months for this, fifteen for that. We fundraised for the wheelchair she needed, and have been waiting five months for an appointment for an OT to fit the cushion and backrest. Got the OT, another 3 weeks for the supplier to even make an appointment to trial them.

So during this time I became disabled. For the first time. A narcoleptic requires routine. Activity. Daylight. Sleep patterns. Exercise. Mental and social stimulation. This narcoleptic was at home on the couch with a person more disabled than she ever was, and who needed the opposite. Sleep when pain permitted. Someone to provide assistance day or night. Quiet. Often darkness.

So I became more disabled than I need to be. We both did. And this is what I hear echoed by everyone who experiences disability in this country. The disability itself is what it is. The inability to access basic services, like a bus, or rehab, or an education, disables even more. Lives put on hold for months, years, decades while one thing after another creates further barriers.

There was a disability discrimination commissioner. His job was to hear complaints from people being discriminated against because of their disability. People who, for example, could not get on a bus and go to school. Could not get their university to do the things they said, like providing materials electronically. The outcomes of such complaints are not always great, the Act does not provide a huge amount of protection, and a lot of wiggle room for the community to say “that’s too hard, I can’t do it” and leave people with a disability behind.

So it was really important to have a commissioner who actually understood that. While it may seem a small thing to most people that a particular bus is only accessible half the time, for the people affected it can mean the difference between being able to get to school and not. Come 1 July there will be no dedicated disability discrimination commissioner, and no commissioner with a disability.

There was a forum on the ABC website devoted to discussing disability issues. Sharing information, discussing relevant topics. For the first time, a significant media outlet covered disability at all. Come 1 July, that’s gone too. And so on. And so on.

Of course we are not alone in this. Our indigenous peers know exactly what we are talking about, and many young people who are unemployed experience similar issues. The minute you don’t have the same resources, connections, finances, accessibility as others, you fall behind, and you do it at a rate of knots

Do I have a disability? No, and yes.

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