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.

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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.

The Tampon Tax

Ladies out there know that we face quite a few economic battles for equality, but what people don’t realize is that most vagina-owners across the world are literally being taxed for it.

Merida from the movie 'Brave' expressing exasperation and hitting her head against the table.

Most countries have a consumption tax, a tax on the purchase price. Most countries also exclude certain ‘essentials’ from this tax, as a way to ensure that people can access necessities at the lowest possible cost.

In Australia we have a 10% Goods and Services Tax on sanitary products (same as the standard tax on pretty much all goods), while items considered ‘essential’ are exempt. That list of exemptions doesn’t just include fresh food, education and healthcare. It also includes exemptions for condoms, lube, sunscreen and nicotine patches. The logic for these additional exemptions? They prevent illness and disease, and therefore shouldn’t be taxed because their use should be promoted. They are essential products, not luxury items.

So why aren’t menstrual products included?

When the application of the tax to sanitary products was protested during the introduction of the GST in 2000, (then) Prime Minister John Howard said that any weakening on the issue of the GST on menstrual products would just open the door to all interest groups seeking an exemption.

Nope
Look at all those interest groups…

His example was that a tax on menstrual products was no less justifiable than one on new clothes. Other government ministers compared sanitary products to shaving cream.

It feels more like politicians were just confident that women would pick paying extra on (already expensive) items such as pads, tampons, and moon cups. Avoiding the inconvenience, the embarrassment of visible bleeding, and the risk of infections is a pretty big incentive after all.

Meanwhile in the UK, women have been paying VAT on their sanitary products since 1973, then at a rate of 17.5%, which later dropped to 5% when they were moved to the ‘reduced rated’ category. That’s right, while items such as cakes, magazines and cocoa are essential enough to be zero rated, sanitary products and maternity pads don’t make the cut.

Supernatural

The United States doesn’t have a national sales tax, but the same problem shines through there, with Food Stamps not covering sanitary products, and women in prison not having access to them.

And none of this even begins to cover the struggles faced by women in less economically developed countries.

Check out google for plenty of petitions to change taxation of sanitary products in your county!

I think we all know who I feel like in this scenario, and it's not Phelps.
I think we all know who I feel like in this scenario, and it’s not Phelps.

Medical ID

I have a ridiculous number of friends with First Aid Training. It probably has something to do with the fact that most of them volunteer with a youth organisation where we have to make sure everyone stays safe and healthy. But that’s not the point. Pretty much all of my friends (first aid trained or not) know that if someone collapses you should look for a medical alert bracelet. Realistically though, these bracelets rarely have enough space that people with serious medical conditions can actually fit the relevant information on them.

What pretty much none of my friends know (and neither have any of my first aid instructors), is that most smart phones have a system for providing a convenient Medical ID (for FREE!). You’re probably aware that when you open a locked smart phone, there is a choice to make an emergency call without needing to enter the passcode.

If you select the ‘Emergency’ icon in the bottom left corner, a keypad to call an emergency number will appear (112 is the international number, and it will link you in to the local number if you don’t know it). But the really cool thing here is that you can go down to the bottom left corner again, and click on ‘Medical ID’.

Welcome to my iPhone's lock screen. See that little 'Emergency' button in the bottom left corner? Press it.
Welcome to my iPhone’s lock screen. See that little ‘Emergency’ button in the bottom left corner? Press it.
Here's what the emergency call option looks like. And down in the bottom left corner is the mystical 'Medical ID'.
Here’s what the emergency call option looks like. And down in the bottom left corner is the mystical ‘Medical ID’.
Probably not for the first time, this is easier on Android. No weird process for you guys. The message is just sitting there on your lock screen.
Probably not for the first time, this is easier on Android. The message is just sitting there on your lock screen.
Look at all this medical information. So handy!
Look at all this medical information. So handy! For added usefulness, include information about yourself instead of ‘List here’.
Meet the Apple 'Health' app. It the white box with a little heart in the top right corner. Cuuuute.
Meet the Apple ‘Health’ application. It’s at the top left of this folder (the white box with a little heart in the top right corner). Cuuuute.

Once you’ve done that, you’ll end up with details about whoever it is. Things like their age, height, weight, medical history, allergies, any medication they’re on, blood type, organ donor status, even handy tips like where they keep their epipen. In short, pretty much everything that a first responder might want to know.

You can also add emergency contacts, so your next of kin (or friendly neighbourhood specialist) can be easily contacted. And all of that information is available in the little heart icon ‘Health’ app that is automatically stored on your iPhone if you have iOS 6 or later. You can even plug it in to other health-type apps on your phone, and do things like tracking your exercise (if that’s your thing). If you have an Android you have to go and download an app of your choice. I’d recommend Medical ID, which is free, and seems to work pretty well.

Moral of the story: if you have any weird medical things happening in your life, set one of these up. And if you don’t, remember how to access it, share the fact that it exists, and check for important information if me or someone else in your life goes and gets themselves into a medical emergency around you.

Prescription Prohibition

As most of you are probably aware, a big part of my life is dealing with chronic illness and disability. If you’re curious about what that means on a day to day level, I’d love for you to google ‘the spoon theory’ or chat to me any time.

There are lots of frustrating things about being a spoonie. After five years of constant pain and fatigue, and lots of fun names for significantly less fun symptoms, my doctors and I are still wondering about what exactly I actually have. Sometimes I wonder if I spend more time hanging out with doctors than I do with my friends. I wonder if I will ever be able to fulfill society’s idea of what a ‘productive’ and ‘independent’ ‘adult’ should be.

Amongst all this, there is one thing I don’t have to wonder about: the thing I find most frustrating about being sick. It’s the idea that there are treatments that could change my life, and allow me to participate in the usual diversions of a university student, that I can’t access. Not because I’m allergic to them. Not because their side effects are too risky. Not even because they’re too expensive to be made widely available.

These treatments are illegal.

Compare that to the 100% legal medications I am currently on. Their side effects include: unusual weight gain or loss, unusual bleeding or bruising, mood changes, hair loss, vision problems, difficulty hearing, seizures, depression, vomiting, difficulty breathing, irregular heartbeat, and plenty more. They increase my chances of bacterial, viral, fungal, and parasitic infections, heart attack, stroke, peptic ulcer disease, osteoporosis, vertebral compression fractures, diabetes, and the list goes on. But don’t worry. These are safe medications.

And this answer didn't even win...
And this answer didn’t even win…

Thousands of Australians are cut off from one of the most promising new medical treatments in the world. People with chronic, debilitating, and sometimes terminal illnesses don’t have the right to access medical cannabis, simply because of a misguided notion that it is somehow equivalent to recreationally smoking pot. Worse, for the most part, people with chronic, debilitating pain, are frequently left out of the conversation entirely.

People often commiserate that it’s not fair that I’m sick. Complete strangers stop me on the street and tell me I’m too young for this, that life isn’t fair. Well this prohibition and restriction isn’t fair. And this is something that we can change.

Please sign this petition asking Tony Abbott to decriminalise the use of medical cannabis for people with chronic pain, epilepsy, cancer, and other related conditions.

To read about the incredible impact that cannabis oil can have on the life of someone with chronic illness causing constant pain, check out this article.

To read the report that the petition mentions, go here.