Working hard, but hardly working

Gary Barling
When I'm asked if I work I would love to confidently answer, yes. The truth is that I do work. But like many other people with a disability, working does not always mean a paid job. Living with and managing my disability involves much work. It can take me three hours to get out of bed, shower, do some exercises and eat breakfast. A lot of my day is spent managing my care needs such as seeing doctors. All this leaves me with less time and energy to work. Work is a great thing. But it is not something everyone can do.
Posted by: 
Gary Barling on 27/08/2012
An old fashioned analog alarm clock with a white face and gold alarm bells on top.

Where does the day go?

Too right, I do mate with a beautiful Australian ocker accent is what I would love to say with absolute confidence. This would be the ideal reply to the question Do you work? However, the question is always followed up with What do you do? This is where I lose my nerve and it becomes harder to sound convincing. Well, um, I'm pretty busy anyway and I write some articles for a website I flounder.

It's a predicament felt by many people with disabilities, particularly profound physical disabilities. Their intellect or ability to think is not affected. They are driven, but may be constrained by their disability.

Beginning the day

From 8 to 11am, I am assisted getting out of bed, showering, dressing, some exercise, and getting breakfast. Some time after 11am I go to the gym for an hour, have a small lunch and have some rest in between. My disability makes gym work and exercise vital to maintaining my strength and independence.

You can see that at this stage, I have already expended a good amount of my already limited energy and it is quite late in the day. It is now about 2pm and what most people would consider a working day is only beginning for me.

Where does the day go?

Yes, everyone asks this question. But in the daily life of many people with disabilities it's more complex. In my case, as well as the morning procedures, I regularly deal with managing my care needs. This includes organising taxis, blood pathology, and appointments with doctors, speech pathologists and so on. It consumes much of the day. I have come to regard these things as work.

For many people with profound disabilities the processes needed to sustain themselves is effectively work. It really is work to get the mundane disability-related stuff out of the way in order to live a relatively normal life. Less conventional than what most people think of as work, but no less difficult and probably more tedious. I don't think that people who haven't been in this situation fully understand that. Even more importantly, can they really comprehend what it is like to have that routine every day?

On top of all this, many people with profound disabilities are trying to do real work. It's hardly a surprise that I often find my real work time creeping into the evening.

At the end of the day

People also have a right to expect some time for recreation. Time for reading, watching TV and connecting with your family. Virtually no one seems satisfied that they get enough of it. When you include time needed for personal hygiene and getting to bed, people with profound disabilities get even less recreational time.

Generally, people with all kinds of disabilities may have the desire and dedication to work but just not the time, focus and/or energy. Besides money and work satisfaction, there are other benefits to work. It has a social aspect and consequently it's a way of preventing social isolation and exclusion.

Unfortunately for many people holding down for example, a 20 hour per week part-time job is unrealistic. This is not unique to people with profound physical disabilities either. The chief point is that just living a reasonable life is work in itself. Anything else that is closer to a job, including voluntary work, is a bonus.

I suspect most people without a disability already understand that it is harder for a person with a disability to work normal work hours. A basic outline of a person's work is a regular part of conversation. While it might make me feel uncomfortable, it really is better to be asked the work question than for people to instead make narrow-minded assumptions.

Readers comments (1)

I completely understand! I don't have a case manager, so I have to liaise with all of my care agencies and everything else, organise everything else, it is organised bloodt well everything. Having a disability really is a job in itself. Fantastic article!

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