The Positivity Myth

I’ve been thinking about the inspirational effect of people with disabilities for a while now. It’s an odd topic really, and probably quite a controversial one. But the idea that I’m inspirational when going through a grocery store in my wheelchair confuses me, and don’t even get me started on how inspirational a puppy using a walker is.

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I was recently speaking with someone who was meeting me for the first time. Along the usual process of getting to know one another, they asked me about myself.

“I’m a part-time law student at UQ, and spend a lot of my other time volunteering.” That pretty much sums it up, right?

“Oh that’s great!” they say, “What else?”

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This is what I would have looked like at this moment if I was a bunch of adorable puppies.

“Well I also have a casual job at an optometrist.”

“Mhm,” comes the response. “And what else?”

“I also run a blog with some advocacy articles when I have the time.”

“Mhm,” comes the response. “And what else?”

“Um…” I’m not quite sure what to say at this point to be honest. I’m honestly not sure if I’m actually talking to a recording. “I actually have a chronic illness, so aside from that other stuff I’m basically a full time medical patient.”

An awkward silence fills the conversation, and I crack under the pressure. “So I’m usually attending at least three medical appointments in any given week,” I stall. The silence continues.

“Oh…wow…That’s so inspirational!”

Is it?

Being a law student, active volunteer, working part time, and running a blog is not interesting. But being sick? Here comes the feature film.Animated gif

Now don’t get me wrong. There have been plenty of times when all I can manage is being a patient, and even that not very well. Sometimes eating a bit of food with your medication is all you can manage in a day. There is a lot of strength in making it through that. But sickness is not inspirational, and telling me that my struggle to be normal inspires you just feels condescending.

People with chronic illnesses and disabilities can be incredibly strong, brave, and tenacious. But categorising us as inspirational is such a dangerous trap to set.

The problem is the positivity myth, and the idea that all people with disabilities can be ‘fixed’. Focusing on peoples’ positive traits is great. Perpetuating the idea that if someone with a disability just wants something enough they will be able to achieve it, is downright dangerous. Because whether you realise it or not, that leaves another glaring implication for people who don’t achieve that dream.

“If you don’t succeed, you mustn’t have exercised sufficient faith and determination”.

Don’t tell me that I would be cured if I put enough effort into my diet, or tried this new yoga class your aunt’s friend’s cat did once. For one, I’ve already tried it, and two, it’s none of your business. Don’t bring out the “If you don’t try, you’ve already failed” line. Don’t be another person who tells me to quit medication and exercise more so that one day I’ll be able to climb Everest. I had no interest in climbing Everest when I was relatively healthy, and that hasn’t changed just because I now use a wheelchair.

Constant suggestions as to how to ‘fix’ disabled and chronically ill people aren’t always helpful. Some of us do cool stuff. Some of us do boring stuff. Most of us do a mixture of the two. I could be wrong, but it seems to me that that makes us pretty similar to you.

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

Undiagnosed is not Unimportant

“What’s wrong with you?”

This kind of questions bring a few problems. It can be pretty hurtful to be defined by a perceived fault in yourself. It is exhausting when every stranger you meet acts out a right to a full recount of your medical history. It is frequently a precursor to well meant but usually useless suggestions for a cure.

It also brings a whole separate kind of pain to a huge number of people with chronic illnesses. Why?tumblr_nztnb9v6Xl1urn718o1_500

We don’t know.

That is, despite many appointments, tests, and specialists, we don’t know what is making us sick.

For me, that is six specialists over the last year, aside from my regular visits with my GP, physiotherapist, and exercise physiologists. This week alone I will be seeing at least seven medical professionals. I’ve been sick enough to need accommodations for over five years now, but we still don’t really know why.

There’s a few diagnosis that we’re pretty sure of: hypermobility, chronic fatigue, fibromyalgia. We’ve gone through a few others, like post-viral fatigue, heavy metal toxicity, and mixed connective tissue disease. And there are still others that doctors have suggested but it’s not quite clear whether I have a diagnosis or if I have to see yet more specialists for that.tumblr_n33z1w5VVo1s0my1wo1_250

So asking what is wrong with me is a pretty loaded question.

And it’s not just the frustration of being sick for five years without an explanation that is upsetting.

When I decided to look for help at the start of this year, I learnt a hard lesson. Most government support services are designed to discourage people from accessing them. Especially people who do not have complete explanations for their disability.

So when I finally let go of my part-time job on the advice of multiple doctors, I found myself on the Department of Human Services website. From the eligibility basics it seemed pretty simple. There was no way I could work for more than 15 hours a week at or above the minimum wage, and since I’ve been on the decline for five years, little hope that I will be able to in the next two years.

But then I came across this:tumblr_nl2rspFdiS1r40oaro1_500

“Your medical condition must be fully diagnosed, treated and stabilised to be assessed for Disability Support Pension.”

Treated? Yeah, we’ve tried every widely accepted treatment and a few less so. And quite a few have just made things worse.

Stabilised? I think I would describe it as an acutely fluctuating symptomology on a stable decline. Does that count?

Lack of clear diagnosis is isolating in many ways, but this kind of official obsession with naming things is incredibly harmful in a world where diagnostics just isn’t that simple. For most conditions there isn’t a magic test that will say what is going wrong. Animated gif

House MD doesn’t exist for people with complex illnesses in the real world. In the real world, you get shuffled from doctor to doctor because none of them are quite the right specialty, or you are simply placed in the too hard basket. It’s not even because the doctors are bad – a lot of them are incredible! It’s that our system simply doesn’t know how to cope with complexity.

Around half of Australians have a chronic disease, whether depression, asthma, cancer, or any number of other things. And 1 in 5 Australians have multiple chronic diseases.12512645_476069139256620_8924674519984002444_n

For most chronic illnesses, symptoms are in a constant state of flux. Medications introduce new side effects which frequently change the longer you are taking it, and then withdrawal brings its own set of symptoms. Then there is the fact that many chronic illnesses leave you more likely to develop subsequent chronic conditions. That means that your new symptoms might not be symptoms of the original condition, or even anything more than side-effects of one of your treatments.

Many individuals spend years waiting for a diagnosis. Even for something as common as endometriosis (1 in 10 women have it) the delay in diagnosis is upwards of seven years.

Clearly the expectation that someone who is too unwell for mainstream employment either know “what’s wrong with them” or be “bludging” is flawed.

So happy Undiagnosed Disease Day. And remember that a person doesn’t need a diagnosis (or need to share it with you) in order for their experiences to be valid.

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!

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.

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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.

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