Wheelchair Debut

I used my wheelchair for the first time at uni today, and I learnt a lot of things, some of which I expected, some of which I didn’t. Here are some of the highlights.

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This miniture horse makes me feel seriously inferior due to being significantly cuter, and significantly faster at wheeling than myself. Also that hairstyle.

9:35am – I remember why I haven’t tried to use a wheelchair at UQ until now. I emerge from the blissful cool of my car to the 30 degree heat, and fact the facts. There are stairs everywhere. Having parked in the disabled parking, I have two options: I can go 100m to my right to a ramp into the building next to the building I want to go into, or I can go 100m to my left, to a ramp which leads to a set of stairs into the building I want to go into. These big life decisions are the complex dilemmas that I always dreamed of facing when I went to university.

9:45am – I still haven’t made it to the top of the ramp. It is my Everest. The heat is making me dizzy. My arms feel like they might be about to fall off. A groundskeeper has paused under the shade of a tree to watch me with a mixture of confusion and concern.

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9:50am – I have made it into the air-conditioning. I’m still not actually in the building I want to be in, but that’s a minor detail. I might just sleep here for a while. Just a few years. Nope, turns out I’ve parked myself in front of a supplies closet and the person trying to access it is too scared or nice to ask me to move, so is just awkwardly shifting from foot to foot as if they need the bathroom. Turns out my arms are still attached and capable of rolling me to the next building over.

9:52am – A lot of people stare. By which I mean most people stare. Wheeling down the hall kind of felt like walking down a catwalk in fashion week (my outfit was pretty stunning after all). Unlike fashion week, I was allowed to smile. I’m happy to report that about 90% of them would return my smile once I noticed them staring.

I can pretend this is what is happening right?

10:30am – UQ really likes to have faulty lifts (see earlier shenanigans). The poor librarian’s face was a picture of terror as I rolled away from the blocked off lift towards him, because he already knew what I was going to ask. It’s okay. In this particular instance there was another maintenance lift that I could use. The problems would arise if I wanted to access the other tower, which didn’t have a lift available.

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Exclusive preview: UQ’s new elevator design.

10:45am – It turns out I can do a wheelie. It was unintentional. It was terrifying. I am a little surprised I didn’t fall out the back of my chair, and I have no idea how to repeat the exercise. But I did a wheelie. I don’t know that I ever want to experience that surprising am I about to fall heels over head again.

11:45am – Original doors as an architectural feature suck. It’s not just that the wood is chipped by age and the thousands of students who have crashing into it over the years. These doors are difficult with crutches, but they’re impossible with a chair. My favourite architectural decision is where they put wheelchair accessible bathrooms behind these doors.

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Me, every time I go down a ramp.

12pm – I love smooth marble tiles. Carpet is exhausting. Grass is difficult. I don’t even want to talk about pebbles. Tiles are glorious. And going down ramps is nirvana. I’m so close to the air-conditioning of my car and then the delightful pre-made lunch I have waiting for me at home, followed by a nice long nap.

12:45pm – Beeeeeeeddddddd.

Stitch sleeping gif


Seven Spoonie Study Tips

I’m not going to lie, I really enjoy trawling through #studyspo. I honestly love stationary so much that living as close to Officeworks as I do is probably a hazard. But when it comes to actually studying, my passion is a little less prolific. By which I mean that unlike the wonders I find in #paleodessert, study is not a thing that I look forward to trying out for myself.

Any number of chronic health conditions (everything from depression to IBS to multiple sclerosis) come with a symptom called Cognitive Dysfunction, more simply known as ‘brain fog’. So even aside from the stifling lack of motivation and pervasive fatigue, thinking is just damn difficult.

It’s time to study smarter, not harder. Here’s seven steps to making studying easier as a spoonie.

1. Change

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Change your clothes. This seems really basic, but hygiene is notoriously difficult to maintain when chronic fatigue, chronic pain, or mental illness are flaring up. Keep this simple, and do what you can. Brush your hair, tie it out of your way, and remember that dry shampoo is your friend. Have a shower (shower chairs are the best, I don’t know why everyone doesn’t use them). If you can’t manage a shower, baby wipes and fresh deodorant make all the difference. Regardless, change your clothes. Even if it’s just to a new set of pyjama clothes.

2. Tidy

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I think the saying is ‘a cluttered desk makes a cluttered mind’. I don’t know how true that is, because I know plenty of organised people with messy desks. But I find studying so much less overwhelming when my study space is clean and tidy. Check out my faves #studyspo and #stationary for inspiration, or at the very least go through and throw out things that are used up or useless, and tidy the rest! If you really can’t handle the tidying up – avoid the issue by studying in nature!

3. ListMy desk

Write down everything that you need to get done. This can look really overwhelming, but we’re going to get to dealing with it all soon. I find a separate list for each subject is most useful. Break up tasks into manageable pieces. For example, instead of saying ‘catch up on readings’ say, ‘read chapter 1, read chapter 2′ etc. Research shows that our brains like short term success more than long term success, and marking things of on checklists releases dopamine, which means a happier you!

4. Prioritise

There are lots of ways of doing this, but it’s now time to prioritise your checklist. I do this with three different coloured highlighters. One colour stands for ‘it needs to get done today’, one for ‘it needs to get done this week’, and another for longer term projects. Some people find timetabling their day a really effective strategy, but it doesn’t work for me because I really don’t know when I will need to block out time to nap, or when a task might take longer than usual because of brain fog. Not being able to stick to a timetable can create feeling of failure, whereas a checklist provides regular feelings of success.

5. Pace

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Not pacing the floor – figure out what pace you can work at. That means find out what time period you can continue effectively for before needing a break, and how long does that break need to be. This doesn’t actually mean study until your brain doesn’t work any more and then take a break. Research shows that for healthy students this is 50 minutes of working, and a ten minute break. More practically, a good place to start is working for 20 minutes, breaking for 10. You might find you can concentrate for longer than 20. In that case, try bumping it up slightly and seeing how you go. If you can’t last 20 minutes, try ten or fifteen instead. Working in five minute blocks is still working.

6. Rest

Different study spots
Change up where you study, or bring a friend!

Having a rest break from your study is crucial. I talked about timing in the point above, so here I’m going to talk about activities. It’s really tempting to take a break by watching something on the computer or tv, and that does work for some people. I start to struggle after I’ve been using my eyes for a while though, so I’m a big fan of grabbing my crutches and having a walk around my back yard, feeling the grass on my bare feet, or sitting out there on a picnic rug and having a snack. The vitamin D is great, the fresh air is invigorating, and there is a lot of research coming out that ‘grounding’ yourself can have all kinds of health benefits. I can’t comment on the science of all these things, but I know it makes me feel better and can go a long way to clearing my head. I don’t really care if it’s a placebo effect if it works!

7. Sleep

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Keep to your normal sleep patterns. Do not stay up late studying (or catching up on TV shows that you’ve missed while you were studying). That means that unless you’ve worked out a particular system with your doctor, you should probably be aiming to go to bed around 9pm, and wake up at 7am. This helps keep your circadian rhythm regular. Of course you may still need naps during the day to refresh, so take these in half hour doses when you feel like you need them to stay sharp!

One last thing

If you have fallen behind in classes, keep up with the current topics! Don’t focus on trying to catch up on things you’ve missed at the cost of things that are currently being discussed in class. You’re much better off keeping up with the current stuff and revising the topics you missed at the end. That way you can ask questions in class, and worst case scenario you’ll know those topics a little better than the ones that you only got to skim through after missing them the first time around.

Any spoonie study tips you want to share? Comment them here!

The “Disability Burden”

'The Australian' newspaper front page with the title "Disability a $17 Billion Burden"
'The Australian' newspaper front page with the title
The Australian newspaper’s Monday 2 November 2015 front cover.

Last week The Australian published an article under the headline “Disability a $17 Billion Burden”. The article itself is not completely problematic – it even points out that a “detailed study last year showed that much of the growth in the DSP had come from the ageing of the population, an ­increase in the retirement age for women and a major shift in other income support programs.” So I’m glad to hear that despite the offensive title, The Australian isn’t perpetuating our national conversation where disability payments are the first on the chopping block, while also being the first to be listed as underfunded social services. The assumption that because “this costs a lot it must be a burden on us, it must be something that is wrong”.

What is problematic is the blatant classification of people with disabilities as not only failing to contributing to society, but actively being of detriment to it. Even worse than that headline is the fact that the Minister for Social Services, Christian Porter, used this same phrase.

Christian Porter Tweet

The comments on the article are really where you see the problem with the headline and its encouragement of already rampant societal ableism. Some of them are pretty general dismissiveness.

“Everyone is vulnerable including tax payers asked to work harder for longer to pay for an ever increasing numbers of malingerers” – Rob.

“Time to become more self sufficient, get on with it and stop whining” – Raymond.

Some of them are downright confusing attempts to rank suffering.

“People who are born with disability’s are being forced to compete with once able bodied persons” – Rodney.

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“If you’ve got better than 50% function in all your limbs and an IQ over 75 you’re not disabled. Everything else is garbage and an invitation to malinger” – Jason.

I’m not quite sure why having a relatively normal childhood makes my current inability to do something as simple as go to the shops less valid.

I also don’t know exactly how to quantify 50% limb function, but then, I am neither a medical professional nor a legislator. In fact, I am so unaware of what is normal for the human body that I turned twenty before I learned that walking to the local shops doesn’t make most people hurt and feel like they are about to vomit and/or faint. I also thought that there was nothing wrong that a pressure bandage wouldn’t fix when I played volleyball with a recurrent partially dislocated wrist for three years. The internalised ableism of ‘just get on with it’ is pretty strong, so it’s probably not always safe to assume people are lazy and melodramatic.

If you want more quantifiable categories, the government is actually a lot more specific than 50% limb function. There is a very interesting piece of legislation that details exactly what you have to not be able to do in order to be considered sufficiently impaired. There are four categories of functional impairment: mild, moderate, severe, and extreme. The part that I find most interesting about this form of assessment is that you can have a moderate functional impairment in all fifteen categories without qualifying for the DSP. An example of a moderate impact? “The person is unable to sustain work activity or other tasks for more than 2 hours without a break due to symptoms”. Can you imagine multiplying that level of everyday difficulty by fifteen different categories, and then being told that you’re a malingerer and ineligible?

There’s also this gem of a comment, by someone who clearly has literally no idea of how the Disability Support Pension is assessed:

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This is what I imagine Gej thinks Centrelink employee do all day…

“It all began when Keating did away with the impartial Commonwealth Medical Officers of Health who adjudicated at arms length on applicants claiming a Disability Pension. Now it’s decided by non medical office dwellers at Centrelink who at first gave everyone a pension to get them off the Unemployment figures and make the Federal Government look good” – Gej.

In case you are curious, there are a lot of requirements to hurdle before you get anywhere near that pension. You don’t just need to provide evidence your condition is “fully diagnosed, treated, and stabilised”, and that you will not be able to work more than 15 hours per week in the next 2 years. You will also need to attend a Disability Medical Assessment with a government selected medical professional, and a Job Capacity Assessment with another government official. If you are under 35, you’ll also have to attend regular participation interviews (because under-35s are intrinsically less trust worthy).

As with all funding for disability, you’ll also have to wait a while. The Centrelink staff I talked to about getting help with medical expenses were incredibly helpful in going through the different options that I should apply for in the mean time, because the DSP application will take a while.

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Similarly to the Queensland Disability Services funding where you phone up, receive a call back in about a week, after which they will take a few days to send you forms. Once you have those forms and fill them out, you can expect to wait a few weeks until you hear back from them about whether you qualify for an independent assessment. All up you’re looking at a 3-4 month wait to find out whether you’re eligible for mobility aid funding. Funding that you are not allowed to apply retrospectively to any aids that you might have purchased in that time. Like, say, the wheelchair you might need in order to go shopping.

So maybe instead of talking about how people are malingerers, you should consider the fact that approximately 20% of Australians have a disability, and an additional 20% have a long term health condition. Despite that, just under 5.5% of Australians receive a Disability Support Pension, just under 25% of who are over the age of 60.

One last thing – on average in OECD countries, 22% of households containing a person receiving disability benefits live in poverty. That gap is significantly higher in five countries: Australia, the UK, the USA, Ireland, and South Korea. That doesn’t sound like the easy life.