Assistance Dogs 101

My Assistance Dog is medical equipment
If you wouldn’t freak out when someone went past you in a wheelchair, don’t freak out when I go past you with my dog. He may be the only dog you see that day, but you won’t be the only person who makes a scene over him. Every time you call out to a Service Dog, they get distracted from the job they’re doing. Depending on what service the dog provides, that distraction is at best an inconvenience, and at worst deadly.

Speak to the handler not the dog 
If you encounter a service dog team, please speak to the handler not the dog! Basically, treat the handler as you would any other person – if you wouldn’t interrupt someone without a dog in that situation, don’t do it just because they have a service dog with them. Sometimes I just want to get a coffee without having twenty people ask me what breed he is. Animated gif

Not speaking to an Assistance Dog includes things like making kissing noises or anything else like that at them. My dog is trained to perform a lot of tasks and behaviours in response to both verbal and physical cues. That can be as small as me clicking my tongue to let him know that we’re working, or as big as gesturing that it’s playtime. That means that when you make noises or gesture at him, he thinks you’re asking him to do something and starts focusing on you instead of his job.

There’s nothing quite as distracting when I’m trying to get to work as my dog suddenly playing dead because he thinks that’s what the person next to him in the elevator is asking for.

Don’t ask what assistance the dog provides
If my Assistance Dog and I are entering your venue, you have the right to ask us to identify ourselves, but that does not include any information about my medical conditions or what services my dog provides. We are obliged to show my identity card, and my dog has to be wearing an identifying coat/harness, but that’s it. It is incredibly invasive to ask what my dog does for me, and even beyond that, it is really inconvenient when people are constantly stopping me to talk about my dog.

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Save the touching for dogs who aren’t wearing vests please! And always ask before touching a strange dog.

My Assistance Dog is a no-touch zone
My Assistance Dog is an extension of me in many ways, so just like you shouldn’t go around touching strangers, you shouldn’t touch my Assistance Dog. He gets lots of time to be a regular dog, and make friends with both humans and other dogs, but the time for that is not when he is in his vest. Just like speaking to them, touching an Assistance Dog is a huge distraction. I might be on my way to a meeting when I need my dog to lie quietly next to me, but if you make him think it is playtime neither he nor I will be able to sit through that meeting.

Please don’t ask if you can have a pat or cuddle, because it is exhausting to have to reject these requests. If it is time for him to have cuddles with my friends, family, or strangers on the street, I will take his vest off (just like when he goes to the dog off leash area!). Animated gif 

Don’t feed the gremlin after midnight
Actually, just don’t feed an Assistance Dog ever, no matter how much cuter than a gremlin it may be. Food is just about the biggest distraction you could offer my Assistance Dog, so please don’t. He’s like a toddler with candy, and already gets plenty of food at home!

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I just really wish I was cute enough to get away with napping on the job like this little guy.

A napping dog is not necessarily off duty
One of the first and most important tasks an Assistance Dog will learn is to relax next to its handler. If I could nap at work and still do my job I totally would, so why shouldn’t my Assistance Dog? He is still ready to respond as soon as he hears one of his cues, so if you take his nap as an opportunity to interact with him, we run into all of those same problems from earlier.

Inform the handler if the dog approaches you
An essential pre-requisite of any Assistance Dog is that it enjoys human companionship. While some prefer the company of their handler, many are intensely social creatures. That means that sometimes, even when you are doing everything right, they might get distracted and approach you. If that happens, please alert their handler if they have not already noticed, as they will usually need to ask their dog to focus back on them and the task at hand.Animated gif

Every Assistance Dog is different 
Just like every person is unique, no two Assistance Dogs are the same. Each one has its own personality, tasks, and relationship with its handler. My Assistance Dog wakes me up by 7am every morning because he wants to watch the birds from the front deck before it gets too hot. I know another Assistance Dog that loves sleep so much his handler has to wake him up three stops before theirs so that he’s ready to lead her off the bus. Neither of those behaviours makes them any less capable of doing their jobs extremely well.

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Every dog is…different. So why not every Assistance Dog?

I’d rather not need a service dog but having one increases my independence, and means that I can now do things that I couldn’t do without him. He’s so much more than just a pet that I happen to take to work with me, and it’s so important that he is allowed to do his job to the best of his ability. By following this advice, you’re helping to make that possible.

Author’s note: Assistance Dog laws (and even terminology!) vary from state to state in Australia – especially ID requirements – but the basic etiquette for being around Assistance Dogs is generally the same. To find out more about the legal differences from state to state, you can check out more information here: www.humanrights.gov.au/our-work/disability-rights/projects/assistance-animals-and-disability-discrimination-act-1992-cth

Dear Parking Referees

You see a person walking away from parking their car in a disabled parking space. They look perfectly healthy. What do you do?

Generally, it seems like people take up one of three options. It’s like a choose-your-own-adventure flashes before their eyes.

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People, presumably. Hint: the answer is at the end of this post.
  1. Confront them – it’s outrageous that a healthy person is taking up that car space!
  2. Loudly  comment on their selfishness – you don’t want to get into an argument but at least they’ll know that they’re in the wrong, and hopefully they’ll think twice before doing that again. What would their grandmother think??
  3. Say nothing – it’s none of your business.

On a purely anecdotal front I feel like most people choose one of the first two, even if realistically I know that I don’t notice the people who notice me but don’t do anything. But I do have cause to feel this way. Mostly because I am harassed frequently enough that my mother doesn’t like me leaving the car without a mobility aid. Not because she is worried about people’s perception of me. She is scared for me. And for good reason.

Most people just have a few sharp comments for me and calm down once I explain that I have a genetic condition that effects my heart and joints, or see my wheelchair. But it doesn’t stop there.

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Times when I wish I had my dog to back me up: always.

I have been verbally assaulted so aggressively that I was too afraid to get out of the car and had to drive away. It wasn’t until I got home and was asked whether I called the police that I realised that was even an option. I could not stop shaking for hours. I cried unexpectedly for days. And this tirade was from someone who acknowledged that I had a wheelchair and crutches in the back of my car, and that I was trying to attend an important medical appointment, and still thought I didn’t have the right to use that car space.

I didn’t want to write about this issue, because it has been talked about so much in disability advocacy circles that I felt like it was tired. I thought that I was over it, but it turns out I am not.

Animated gif from 'Easy A' with Olive saying "I'm not judging you or anything but oh my god"
Literally what strangers do.

I am used to walking through the judgemental looks and sharp whispers on my way to pull my wheelchair out of the boot of my car. I am used to calmly providing strangers with more information about my medical history than they have a right to (hint: they don’t have a right to any of it). I am used to people assuming a lot about me.

But every now and again something happens that throws me, that brings me back to the world that the people who love me live in. The one where people are scared or outraged by the way that people behave towards me. Things that push me beyond being able to just laugh it off.

Today it was a group of teenage boys calling out about whether I was a fake cripple. But there is no telling what it will be tomorrow, or next week, or next year.

It is not okay. And I shouldn’t feel like it is already talked about enough because it is still happening. By definition, that means we are not talking about it enough.

If you can’t see a Disabled Parking Permit on display, don’t freak out. A simple “Hey mate, sorry to interrupt you, I was just wondering if you have a disabled parking permit?” is the way to go.

If you can see a permit on display, it’s even easier. Leave them alone.

 

An Open Letter to the Department of Transport and Main Roads…Part 2

Australian Disability Parking Permit

 

A scroll through the Queensland government website would inform you that after applying for an Australian Disability Parking Permit, “You will receive notification by post of approval or refusal of an Australian permit within approximately 28 days from when your application is received”. But don’t be deceived.

Having waited 56 days and multiple phone calls before receiving it last year (more on that experience in part one of this letter), I planned ahead this year.

With my permit set to expire on 20 March, I went to the Chermside Department of Main Roads and Transport customer service centre, and applied for a renewal of my permit on 1 February 2016. On 10 February I received a letter (curiously dated 25 January 2016) stating that although the application had been received, it could not be processed as it should have been accompanied by a processing fee. I returned to the Chermside centre on 12 February, processed the payment, and was assured that my application would now be processed.
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(Interestingly, your website says that when renewing a permit you don’t have to pay the processing fee again, but I have since been informed that only applies to five year permits. Your words on why I wasn’t charged the fee when I went to the customer centre and my application was ‘processed’? It is a confusing system and staff don’t always know what the rules are. How reassuring.)

Having heard nothing further, I phoned the department on 30 March, and was told that processing had not begun as they hadn’t realised that payment had been received. The supervisor had already left for the day, but would call me the next day to discuss it more. Said supervisor phoned on 31 March to confirm that processing had been completed and the permit sent to the printers, and I would receive the permit in 7-10 days.
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Now 60 days after lodging my application, with my permit having expired eleven days ago, I was starting to feel a little desperate, and asked whether there was any interim system that would mean I could leave the house independently while I waited for the permit. The only advice he could offer me was that next year I ensure my doctor writes “five years/permanent” instead of “1-2 years”, so I would not have to navigate this process annually.
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I did not expect my doctor’s optimism that the last five years of chronic illness and disability would not stretch into a seventh to be such a barrier to my right to access society.

With my permit expired and university mid-semester break over, I am left with the unfortunate reality that I will not be physically able to attend my classes at university without use of the disabled car spaces I usually rely on throughout the campus. With such a comprehensive system as the Australian Disability Parking Permits in place, UQ no longer offers its own short term permits.

I don’t know what makes one month the period of time which it is appropriate for someone to be deprived access to society. Maybe it’s how long it takes for taxi money to run out? Or for our friends and relatives to become sick of ferrying us from doorstep to doorstep? Maybe it really does take a whole 28 days to ensure the doctor that said the permit was required is a real and qualified person and pack a piece of paper into an envelope?

Maybe it’s just that 28 days is the longest they think they can set while still sounding reasonable. But there is no point in setting a timeframe if people can’t rely on it. Last year it was 56 days. This year it is 65 days and counting.
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In just the last 14 months, I’ve spent a third of a year waiting for the department to get their act together. I’ve nearly collapsed twice because you called me, my crutches, and my numbered ticket to discuss a disability parking permit, up to a standing-only desk, and then having to crane up from my wheelchair at that same desk a third time.

It’s time to take responsibility and treat the people with disabilities who come to you with respect and consideration. Be upfront about your waiting periods, train your staff on the correct procedures, and put mechanisms in place to track and follow up the process of applications to ensure you meet the 28 day waiting period.

Telling me I’m simply unlucky and will just have to be patient isn’t good enough.


 

Have you or someone you know had a bad experience applying for you permit? Get in touch!

Choosing Mobility Aids

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I’ve had a few questions about how to chose a mobility aid or how to know when it is time to get one (or a new one), so I thought I’d put a summary of my experience here.

Before I say any of this, there are a few obvious caveats – maintaining muscle tone and mobilising regularly is really important for ongoing maintenance of health. Advice from a medical professional who understands your condition and its ongoing management is definitely worthwhile. As with any treatment option, you make the decision, but it’s worth at least getting their perspective first if possible. It might even come with some assistance getting funding for whatever aid you go for.

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There’s a lot to choose from, and it’s confusing.

In my experience, and talking to others who have gone through this process, if you are thinking about a new mobility aid, it’s probably because you need it. The thing about aids is that our society is so inaccessible that if you find it easier to get around with whatever aid you use than without it, you probably need it.

The main argument against my getting mobility aids was definitely loss of muscle tone caused by relying on them instead of exercising normally. The thing is, I wasn’t leaving the house because I literally couldn’t do that ‘normal’ walking. So I wasn’t getting that exercise and muscle tone anyway.

Cane/Walking Stick

These are definitely the easiest and cheapest mobility aid to try out. We’re talking a collapsable cane with a fun pattern for less than $30.

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This could be you!

Pros:

  • They’re pretty good if your problems mostly occur in one leg at a time, or are usually worse in one leg at a time;
  • Can help with balance;
  • Can help with using stairs;
  • Provides a visible reason that you need a seat in public (e.g. on public transport) or when you’re about to have an unscheduled floor meeting.

Cons:

  • They’re not super helpful if you are having bad problems with both legs, or when you can’t weight bear at all on one leg for a long period of time;
  • They put a lot of pressure on your wrist, even if you get one with an ergonomic grip to help your hands.

Crutches

There are three main types of crutches: axillary, forearm, and gutter.

  1. Axillary crutches are the ones you get if you have a sympathetic doctor when you sprain your ankle – most of your weight is borne on your underarms, which can cause some serious problems particularly in the long term.
  2. Forearm crutches are used for more chronic conditions or longer term rehabilitation – the idea is similar to a walking stick, but with a loose plastic band around your forearm for extra stability.
  3. Gutter crutches are the most uncommon of these three because they’re super inconvenient, so they’re really only used when pressure on hands/wrists is just as detrimental as pressure on the legs. The forearm is strapped to a panel on the crutch rests at a right angle to the shaft of the crutch, and to the upper arm.

I use a brand of crutches called Smart Crutches, which are basically a cross between forearm and gutter crutches. They’re more expensive than regular crutches, but are also a lot more comfortable. Most importantly for me, the angle can be adjusted from 15-90 degrees to provide extra support to your wrist.

Pros:

  • Can be used when both legs need support, or when one leg cannot weight bear at all;
  • Help with balance;
  • Can still be used getting up and down stairs and navigating public transport etc with relative convenience.

Cons:

  • You can’t carry anything, even a meal or drink from counter to table, and other things like shoulder bags are also a no-go;
  • More expensive than a cane – absolute minimum is $40 for a pair, but it’s easy to spend $100-$200 for a nice/comfortable pair.

Walker/Rollator

I haven’t actually used these outside of showrooms, because unfortunately using them there and my research showed that they weren’t the right aid for me, at least at the moment. But that doesn’t mean they aren’t the right one for you!

Pros:

  • More stability and help with balance than crutches or a cane can provide because they have more than two points of contact with the ground at set and stable angles;
  • Generally speaking, they are more easily collapsable and lightweight than a wheelchair;
  • Can carry things like a dinner tray or small amount of groceries on an attached tray/trolly feature;
  • You can get forearm walkers to take the pressure off your wrists.

Cons:

  • They don’t work if you can’t bear weight on one of your legs;
  • You can’t use them on stairs, which may block you from accessing some building, public transport, etc.;
  • They can be really expensive – you’re looking at $50-$1,000 or even more depending on features and quality.

Wheelchair

These come with such a wide range of features that one can provide a completely different experience from the next. You can go fully manual, fully electric, power assist wheel rims, power assist units with joysticks, even stuff like this.

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Me, every time I go down a ramp.

Pros:

  • They are so good for balance – seriously the decrease in unscheduled floor visits is incredible;
  • Good for travelling long distances, particularly when you have an electric chair or a friend to help push your manual one;
  • If you can sit, you can find a wheelchair that will work for you (although they also come in the standing variety)
  • You can get them pretty collapsable with wheels popping off, everything else can fold in (some of them get down to 10kg and possible to fit in overhead airline luggage space);
  • You can get extra features like trays, wheelchair backpacks, cupholders – basically depending on your funding options you can find a way to do most things with a wheelchair that you could do without (including going to the beach or swimming).

Cons:

  • They are not designed for chronic pain, they are designed for mobility – that means that if sitting upright is painful to you, particularly with a lot of back issues, the longer you stay in the chair the more pain you will be in;
  • If you have issues with fatigue or grip pushing a manual wheelchair will be a serious struggle, particularly up ramps and hills;
  • You can’t go anywhere with stairs, which will lock you out of a lot of buildings and public transport, and will mean that sometimes you have to go a very very very long way around to get where you’re going;
  • They are so expensive. Oh my goodness. Pretty much a $400 minimum, going up to well over $10,000.

There it is, my attempt at summarising a vast multitude of facts with all the bias and inaccuracies that a single person’s perspective will bring. Comment with your experiences and recommendations!

 

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.

Pain Scale

ECard on pain.

Pain is really weird. It is subjective, not objective, but it is still frequently necessary to categorise it in a simple system. Hence the “rate your pain from 1-10.” I’ve always found that scale really difficult to use, as I’ve never been sure if I am over-estimating, or under-estimating, how I am feeling. 

Samantha from Sex and the City at an auction.
When doctors ask you to rate your pain out of ten…

Some people might feel a broken arm as a 4 that another person may experience as a 7, but that broken arm is still only a 4 for that person (whether due to pain management techniques/coping mechanisms, their brain just being naturally better at dealing with pain, etc.), and to categorise it otherwise only makes it difficult to achieve an accurate diagnosis, as you don’t have enough numbers at the top end of the scale when you need them.

Having said all that, I find the scale below helps me to step back and evaluate what level my pain is – even when I don’t have the mental capacity to compare and contrast to previous pain experiences. That’s super helpful when you consider that severe pain kills concentration.

So here it is, an objective system for discussing a subjective experience.

0 – Pain free. Obviously. This is (much to my surprise) what most people experience most of the time.

Mild Pain – This pain doesn’t really interfere with your daily life, but it is annoying and will nag at the back of your mind.

Penny from Big Bang Theory

1 – Very mild pain. This pain is barely noticeable, and you don’t think about it most of the time.

2 – Minor pain. This pain is annoying, and might has the occasional strong twinge, but for the most part it’s only there when you are thinking about it.

3 – Distracting pain. This is the point at which your pain becomes consistently noticeable and distracting, however at this stage you are still able to adapt to it and continue your regular activities.

Moderate Pain – This is where your pain Interferes significantly with your daily activities.

Leslie Knope from Parks and Recreation.

4 – Moderate pain. You can ignore this level of pain for a period of time when you are immersed in an activity, but it is still distracting.

5 – Moderately strong pain. You are still able to work or socialise to some extent with effort, but you can’t ignore this pain for more than a few minutes.

6 – Strong pain. You have serious difficulty concentrating at this stage, and your pain interferes with your normal activities. You’re thinking about the pain all the time, even if you can focus on something else for a little while.

Severe Pain – This is where pain becomes disabling, and leaves you unable to perform basic daily tasks. 

Santana Lopez from Glee.

7 – Severe pain. Your ability to complete daily activities and socialise is significantly limited, and the pain affects your sleep. Your senses are dominated by pain.

8 – Intense pain. Your ability to be physically active is severely limited, and it is difficult to converse. It is difficult to think of anything but the pain.

9 – Excruciating pain. You are likely crying out or making other noises of distress such as uncontrollable moaning. At this point you are unable to converse. Pain is all you can think about.

10 – Unspeakable pain. You are possibly delirious at this point, and certainly bedridden. Most people, thankfully, will never experience this level of pain. If someone is in this much pain, they need you to take them to the emergency room.


Thoughts? Feelings? Other ways to rate your pain? Post them in the comments below!

Elusive Elevator

Lift is unavailable

Last week I was supposed to attend a tutorial. Instead I wrote this. Not because I’m a bad student (although that is a separate argument we can have later). It’s because I couldn’t get to my tutorial.

This sign is proudly displayed next to most of the elevators at UQ, as part of the
This sign is proudly displayed next to most of the elevators at UQ, as part of the “Take the Stairs” campaign. Unfortunately I am more concerned with my ability to attend class than walk up stairs for 2 minutes a day to prevent weight gain…

Now it’s no surprise that UQ doesn’t really understand that elevators are a necessity, not just a luxury, for many people. After all, they have signs telling us to “Burn calories not electricity” by taking the stairs. And they are not the only ones.

I have resigned myself to the fact that it would be unreasonable for me to ask that all classrooms are accessible. I planned ahead. At sign-on I structured my timetable so that all my classes were on the ground floor or accessible by lift. I ended up with one class up a single flight of stairs because I wasn’t quick enough, but I can live with that. Apparently that wasn’t enough.

I didn’t sleep well on Monday night, thanks to a combination of crippling pain, nausea, and dizziness (but my side-effects are old news). So Tuesday morning I seriously considered the relative value of trying for an hour nap instead of attending my first class. I decided that there was simply no way I could afford to miss it, so I hustled myself off to St Lucia.

I parked in one of the disabled carparks out the front of Forgan Smith (conveniently located right next to some lovely stairs) and made the short trek to the law library to catch the elevator to my first class of the day. But that was not to be.

I entered the lobby to find the elevator doors open, which for one brief moment I thought was a huge burst of luck, as I wouldn’t have to wait for what any UQ law student could tell you is probably the slowest elevator any of us have ever been in. (But seriously: One friend who recently got back from exchange had forgotten how slow it was, and so started to worry that she had become stuck in a broken elevator.) It wasn’t luck though, because beside the open doors was a sign. “The lift is currently unavailable. We apologise for any inconvenience.”Lift is unavailable

Being forced to walk up four levels with at least a laptop and probably some textbooks too may be nothing more than an inconvenience for most people. But there is simply no way that I would be able to make it up stairs that leave fit long distance runners panting. Unfortunately, UQ does not have any system in place through which notice can be provided in advance, or alternative arrangements for class attendance can be made.

To be honest, this is probably a very small issue. Just under 20% of Australians have a disability. Add on to that the people with chronic illnesses (but not disabled) that make climbing that many stairs anywhere between difficult and dangerous, and you’re still left with a minority. It is entirely possible that I am the only person at UQ who gave this broken elevator a second thought.

I’m not trying to draw some audacious conclusion like ‘UQ is saying that I don’t have the right to an education’. That obviously isn’t the case. UQ simply doesn’t perceive accessibility to be as important as architectural design. This was just a reminder that I am an inconvenience, and it is my responsibility to find a way to participate in university.

You see the problem right?
Surely it isn’t just me who sees a problem here?

Resigned to missing my class, I headed through the lobby to sit down on the ground floor of the library to at least try to get some study done.

You're joking right?
Please don’t do this.

With irony almost too good to be true, as I sat writing this on the ground floor, a couple of people sat down next to me, discussing how outrageous it is that “taxpayer dollars are being wasted because every new building is required to be accessible to disabled people”. I listened to how “the disabled” are asking too much. Aside from their presence in a university library, these individuals further demonstrated their level of education by casually listing four key forms of equality in their discussion: civil, political, social, and economic. Educated enough to elucidate exactly why they thought that “the disabled” only deserved some of those, because it was their own fault that they never achieve the others.

I nearly sat by silently, knowing that both eavesdropping (unintentional though it might be) and interrupting are very rude. Instead I leant over and said “Excuse me, I’m so sorry to interrupt but I just thought I might add another perspective.” They pair looked slightly surprised, but comfortable enough with the intrusion. After all, it’s not unusual for someone to lean over and start participating in a debate in the law library.

“I have a physical disability, and because that lift out there is broken I can’t go to one of my classes today.”

“That’s awful,” the girl said. I nodded in reply, and apologised again for interrupting. The boy’s response was slightly less productive, and included an assertion that while that was unfortunate for me, it wasn’t what he was talking about. He still considers my story to be the exception, not the rule. The idea of people ‘claiming’ to have disabilities actually being bludgers is pervasive, especially when young people are considered.awkwarddd

Despite what he, and many others, may think, people with disabilities are not seeking to inconvenience or disadvantage others. We are simply seeking the opportunity to participate in society as fully as possible. And it is in the interest of society to promote that, because increasing accessibility for people with disabilities makes life easier for everyone. It’s called the Curb Cut Effect. Basically, the curb cut which allows people using wheelchairs to access the sidewalk also make life easier for people with strollers, grocery trollies, cyclists, and plenty more. Side opening ovens don’t just help people who can’t bend and lift things, they reduce the strain on one’s back, allow kids to more safely assist with baking, and make it easier to avoid an accidental burn. There are plenty more examples. You would be astounded how many of your regular kitchen utensils were actually developed for easier use by people with a variety of disabilities. Making society accessible to everyone isn’t doing them a favour; it’s being a decent person.

I have tried and failed to think of an accommodation which has been made for people with disabilities which was not to the advantage of society at large. Failing that, I’ll throw in names of a few of many famous people with disabilities: Beethoven, Stephen Hawking, Helen Keller, Stevie Wonder, Franklin Roosevelt, and plenty more. That’s not even counting the huge number of people who you would never know have a disability (96% of people with chronic medical conditions show no outward signs of their illness).

But you don't look sick

Luckily for me, when I emailed my tutor/course coordinator asking if I could meet with her to talk over what I had missed, she kindly offered to email another tutor requesting they allow me to attend another tutorial this week. I did that, and only half the class laughed loudly when I explained to the tutor that I was in a tutorial I was not registered for because the lift was broken. The laughter stopped quite abruptly in favour of an awkward silence when I moved my cane.

I’m very glad for the fact that this course coordinator was so understanding, as others have been in the past when I share my particular set of circumstances, or at least upon seeing my official UQ Student Access Plan. I just hope that we’re moving towards a time where these exceptions don’t have to be made haphazardly, because we place priority on the accessibility of all areas of society to everyone.

Six Tips for Talking to Someone with a Mobility Aid

Not all disabilities look the same.

There are a lot of things that I wish people knew about medical aids. To be honest it’s not even that their knowledge would make my life easier, because I don’t think it would really change much for me. I think it would just make them so much more comfortable around people with disabilities when they use aids.

My funniest encounter with a person who didn’t know as much about aids as they thought they did happened one Saturday afternoon, a few months after I first started using a cane. I was walking to my car after work, and despite my entirely illogical dislike of using my cane while in uniform, I was in enough pain that there wasn’t much of a choice in the matter. But it’s okay, because this lady was here to help me out.

She was probably just over 50 years old, and clearly used to being the authority on every topic she chose to speak on. Upon spotting me, she beelined across the aisle towards me, while I awkwardly tried to dodge her, assuming that she was aiming for one of the shops I was walking past. But then she let out a little “Ahem”, and said “Excuse me young lady”.

If you ignore it, it will go away
My wishful thinking…

To be honest I had a little panicked moment where I thought maybe my skirt had got hooked up under my bag and she was about to let me know that I was flashing everyone around me. But no, my skirt was safe. Maybe she wanted directions?

“You know you are using that stick incorrectly don’t you?” She enquired with a patient smile.

“Uhh…” I didn’t even know what to say. The fact that I was using the cane exactly as my physiotherapist recommended was beside the point.

“You should be holding it in the other hand.” Oh good, she understood my confusion and was filling the silence for me. “Haven’t you ever seen someone use a cane before?” There was now a little bit of disgust intermingled with her condescension. My face was just confusion intermingled with confusion.

I didn't know that. Tell me more.

“I…uh…have to go.” Wow. All the speed, wit, and insight that one might expect from a student of one of the top law schools in the country.

The strangest thing was, as I walked away I began to question how I was using my cane. Whether this stranger with no knowledge of my medical history, illnesses, or injuries somehow had an insight that none of my many specialists and allied health professionals had shared with me. It took me the full drive home to realize, no, that wasn’t the case.

What this lady had was not insight, but it is quite common. And before you say it, what she had wasn’t stupidity either. It was internalized ableism.

Our society has a very strange tendency to assume that people with disabilities have less intelligence, capacity, and autonomy.

Now don’t get me wrong, I would be the first to say that my capacity, intelligence, and autonomy have all decreased since becoming unwell. Chronic pain and fatigue bring a host of psychological symptoms with them, including aphasia, decreased attention span, and a generally ‘foggy’ brain. My capacity and autonomy have also plummeted, resulting in things like shower chairs, and not being able to have a bath without someone else at home, because at best I won’t be able to get out by myself, and at worst, I’ll pass out before I can get someone to help.

But don’t you dare tell me that I cannot make decisions for myself, or that I am not a legitimate authority on my health. You have no right to make that judgement for another person. Even if you can’t get your head around the fact that someone does not need to fit into your idea of a successful and productive member of society (which you should, no matter how hard it might be for you), I am still perfectly capable within that model.

Beyonce saying

I was accepted into, and now receive distinctions at, one of the top law schools in Australia. I have been on the Board of Directors of a statewide not-for-profit organization, and am now on the Chief Human Resources Officer of one of Australia’s largest youth-led organizations.

But when people walk past me and my cane, all they see is my cane. When they see me in a wheelchair, they start wondering if I’ve always been in it, if I was in a car crash, if I got drunk and did something inadvisable. I can understand that to a point. Humans have a morbid curiosity, and as a society we class disability as disgusting and fascinating. It follows then, that people with disabilities are less than, or at least lesser, humans. That is the premise of freak shows.

It is the same premise that has historically been applied to other disadvantaged groups to justify society’s oppression of them. Just like other minority groups, people with disabilities are not represented proportionally in our media. Just like other minority groups, when people with disabilities are included in our media, they are not portrayed by people with disabilities.

As Matt Fraser, a British comedian who held a starring role in ‘American Horror Story: Freak Showsaid:

“There’s no excuse really for not casting a regular wheelchair-using actor in a wheelchair-using part. People call it cripping up. It’s akin to blacking up or black-facing in America. I always say: if you’re worried about whether it’s OK or not, just replace the world disabled with black. And if it still seems OK, carry on.”

(Please note, I am not saying that there is no issue with the way racial minorities are represented in our media. There clearly is. But the practice of hiring able-bodied people to play people with physical disabilities is just as disturbing as the practice of hiring white actors to fill non-white parts.) But that is an issue far too large and complex to be dealt with as a side-note in this post.

So here’s a few tips on how to behave around people with disabilities who may be using aids to make their lives easier. That could be a wheelchair, a cane, a wrist brace, a service dog, a walker, anything.

1. Don’t Act

Not don’t act weird. Just don’t act. Be yourself. You are a person. They are a person. Behave with respect, empathy, and consideration, in the same way that I hope you would with anyone you come across.

2. Don’t ManipulateWell actually...That's none of your business

You probably don’t realize that this would be a problem, and certainly don’t think that you are manipulating them when doing this. But don’t ask someone about their health in a situation where they can’t tell you it is none of your business. For example, a service environment, where it is their job it is to smile and make you happy, is not a situation in which they are likely to feel that they can politely (or not) tell you to bugger off. Instead, be a nice person interacting with another person who happens to work in customer service.

3. Don’t Interrogate

When you’re really curious about what it is that makes someone use the aid, don’t ask someone “what have you done to yourself” or “what’s wrong with you” (It’s not their fault, and someone’s body being different to ‘normal’ (whatever that is) does not mean it is “wrong” or broken). Instead, feel free to google and educate yourself on how accessible society is to people who use that aid.

4. Don’t QuestionThere are many reasons to need a wheelchair

If they use the aid some days but not others, or even for part of a day, don’t comment or joke (whether to them or anyone else) about how they are faking it, or putting on a show for sympathy. Instead, try googling the term ‘flare’ or ‘ableism’, because it’s not your job to police how that person is feeling, and it is very common for people’s physical condition to fluctuate, and it does not mean that they are faking it.

5. Don’t Taunt

Don’t make jokes about them being a cripple (even if they do about themselves). When they use those words, they are reclaiming them. When you do it, however much you may think you are an ally, you are using a position of power to perpetuate a historically derogatory and inflammatory vocabulary that dehumanizes a huge portion of society. Instead, ask how they’re going and if there’s anything you can do to help (unless of course they’ve asked you not to).

On the topic of vocabulary, don’t say things like ‘confined to a wheelchair’. Most people who use wheelchairs are very grateful to them, because their wheelchair/s allow them to access areas and opportunities that would otherwise be closed to them. Using a wheelchair actually gives a lot of people a whole lot of freedom. So please don’t talk about how negative our experience must be just because you can’t imagine yourself in it.

6. Don’t ControlThat's not funny

Once again, there is a difference between wanting to help, or lighten the mood, and reducing a person’s autonomy. Don’t start pushing someone’s wheelchair unless they have asked you to. Don’t take someone’s cane and play with it, or do a funny dance. You’re taking control of something that is crucial to their ability to participate in society to the extent that they can, and you are turning it into a joke. You are also, in many cases, literally taking away their ability to walk away while you make this joke.

Instead, try asking if there is anything you can do to help. If you can see they are struggling, but they have declined help, don’t push them. If you know them well enough, it might be appropriate to ask something along the lines of “Do you not want help because you want to do this for yourself, or because you don’t want to inconvenience anyone?”


Any other tips on how people can be people around people? Comment below and I’ll try to update this as I think of more!

Please note that all the advise above is general, and you should always be alert to and follow the requests of an individual whose preferences on this matter may be different.

An Open Letter to the Department of Transport and Main Roads

Australian Disability Parking Permit

I don’t expect reasonable waiting times for services from you. I accept that in the world of government a reasonable time period for me to pay my toll is three days, but the reasonable time to process my application for a Disability Parking Permit (something designed to significantly increase quality of life and participation in society of a vulnerable minority group) is 28 days. I understand that efficiency is not the name of this game.

What I do expect you to do is be honest about what you are doing, and the relevant waiting period for that action.

Being called up to a standing-only desk at your Chermside office to apply for a Disabled Parking Permit was a clear sign that you don’t really care about the people seeking assistance from you. But I’m used to my limited mobility and ability to stand being something that should only ever inconvenience me.

The first hint I had of your blasé attitude towards the truth was your phone line assuring me that “the current wait time to speak to an operator is less than five minutes” on multiple occasions while I sat on hold for over ten. While it’s great to hear the recorded line “we recognise your time is valuable”, you should understand that most people would prefer you to be upfront about the fact that they should expect to wait fifteen minutes. That way they will be thrilled when your hold music ends three minutes earlier than anticipated.

I would never have discovered the wonders of your hold music if you hadn’t failed to notify me of the outcome of my application within the 28 days you note on your website. Not wanting to be a bother (and concerned I would spend twenty minutes on the phone only to be told that your website says “approximately” 28 days), I waited 40 days after applying to contact you and check if everything was okay. Turns out, everything was not okay. Your Chermside office had failed to process any part of my application other than the unrefundable processing fee for it.

Now I will admit this was not necessarily an institutional failure, and so I was feeling quite forgiving when you told me that you would print and post my permit that day, 18 March, and that it would be with me in a few days.

I called again March 26, (luckily I had time to sit on hold as I was already going to miss a lecture due to being unable to walk from the carpark to the theatre), to find that you didn’t even send my application to the printers until 24 March. But you informed me the good news was that I might receive it by the end of the next week, 56 days after lodging my application.

I don’t know if you are aware of this, but Queensland’s motto is “Bold but Faithful”. Maybe in the future you should focus a little bit more on the second half of that, and be honest rather then “optimistic” with your waiting times.

As it turns out, I finally did receive my permit 56 days after lodging my application. After two months of barely leaving the house because even if I could work up the energy to do something, that would be used up by the walk between my car and my destination.

Four months later, I don’t know how I would get out of the house without my permit. Except I suppose I do, because I’ve been in that position, and the answer is that I simply wouldn’t. So I am incredibly grateful that disabled parking permits are available to increase the ability of people with disabilities to participate in their community. I am incredibly grateful that Queensland has some of the best concessions for people with disabilities parking of any states and territories in Australia. But I dread my permit expiring on 20 March 2016, and how I will have the energy to go through all of this again.