Why PWDs are fed up with asking for the inclusion you take for granted

In our modern world building so large around us, to many it may seem like all this disability inclusion and access requirements “stuff” is quite new. The slogan for this year’s Disability Action Week is about Inclusion (due to it being the year of the Paralympics the focus is on inclusion in sport mostly). For those, even as new to the game of advocacy as myself, promoting Inclusion of people with disabilities can seem as new as teaching grandma how to use a smartphone. Truth is, we should, as a whole society, be ashamed of the fact that we are still having to be reminded, educated or told, to be inclusive.

It’s 2016 and we are STILL asking for people with disabilities to be included in every day activities in the community that everyone else takes for granted. Things as simple as travelling the footpath to go to the local shop.

Inclusion won’t happen until it starts happening without us having to ask for it. It certainly won’t happen until attitudes change to stop thinking that inclusion is a burden.

The Disability Access to Premises Standards might only be 6 years old but it was a long time coming even back in 2010 and we still have a long way to go in getting it right. The Disability Discrimination Act 1992 is not 24 years old in Australia and STILL, we have cases every day of discrimination against people with disabilities in such common setting.

Just last week a large chain supermarket manager in Fern Tree Gully Victoria was approached by a member of the community about the blocking of the shared space beside a disability parking bay. The manager’s response was that they have always used that space for their fundraising stalls and if the shared space was an issue, he would have it removed.

Photo shows a marquee and tables in the shared space beside a disability parking bay. This space allows people to get their wheelchair or other devices beside the car. The shared space is marked with diagonal yellow lines. It is not a parking space. Under Australian Road Rule legislation it is classed as a painted island.
Photo shows a marquee and tables in the shared space beside a disability parking bay. This space allows people to get their wheelchair or other devices beside the car.
The shared space is marked with diagonal yellow lines. It is not a parking space. Under Australian Road Rule legislation it is classed as a painted island.

Not only will the car park no longer comply to the Access to Premises Standards 2010 but he has effectively just told every person with a disability that he doesn’t care if you want to shop at that store, he’s not going to make it possible for you. In fact, he’s intending on doing the opposite. There was no possible way he could have utilised any of the other 90 or so regular parking spaces, it had to be in the disability parking area so hence people with disabilities have to go.

All the great legal minds in the country will tell me (what I already know) that it’s a case of indirect discrimination. There is a legal process in which we can deal with this. It is also long, arduous and can be quite costly. Naturally as you’d expect, Head Office management of this large supermarket chain dealt with the complaint accordingly and the issue has been rectified (so we are told). When there isn’t a higher power at that level to deal with the complaint we’re left with nothing but the legal process and quite frankly I think that’s a bit shit.

We’re not asking for special treatment here. We’re asking for something quite simple. Inclusion.

To be included we sometimes require alteration, adjustment or addition to something that is existing. In this case, it is access to the building via parking.

For someone with out a mobility impairment, they will just drive on in, hop out of their car and go do their shopping. For the rest of us with disability parking permits who rely on those very well set out spaced marked for disability permit holders so that we may then hop out of the car into our wheeled devices or whatever assistive device we may use and THEN we go do our shopping. For many of use our adjustments don’t stop there but that’s the basic. We asked for an anti discrimination act and finally got it in 1992. We asked for minimum standards for access to premises and finally got it in 2010. Why are we still having to then ask for these things that have already been legislated?

Before my time as a person with a disability, there were many others like me. Some of them still advocating today, some, worn out from the years of repetition are happy to let people like me continue the campaign and I can assure you after only 4 years of this crap it does wear you out.

We get tired of asking you not to park your car on the footpath because gutters are not designed for wheelchairs to travel across. We’re tired of asking you to install eftpos facilities that can be used at wheelchair height. We’re tired of asking for ramps to be placed near the access. Most of all we’re tired of having to ask to be included.

I write this article today with great disappointment. I was promised so many things this year for Disability Action Week by various sectors, agencies and businesses. Nothing happened. It seems that unless I am still there driving it, constantly annoying the people in charge to make sure these things happen, it just doesn’t happen.

Just do a search for Disability Action Week events here in Queensland and I challenge you to find an event or promotion run by the private sector. Find me something that isn’t by people with disabilities, a government agency or non profit organisation so that I can thank them for being considerate enough to act on inclusion without having to be asked or have it driven by us.

If you ever find yourself wondering why someone with a disability is cranky it’s probably because they’re tired. Tired of having to ask to be included in what everyone else just takes for granted. Life.

Please stop telling me how I’m going to die.

Imagine if every time you spoke about an event in your life, someone told you how you were going to die? They can totally relate to your situation because they know someone or knew someone in that exact a similar situation, so they feel the need to detail how your demise will be.

You got your first car? My uncle had a car once. He died in a fiery crash when he was hit by a speeding driver on the highway. Terrible terrible thing to happen. Horrible way to die.

You’re pregnant? My great great grandmother had three kids but she died in childbirth on the fourth. Dreadful thing to happen. So tragic.

You got the flu? I watched my sister go through the flu. Slowly and painfully it ate away at her. She was a brilliant teacher with a great career until the suffered for years with the flu and then she finally died. It was so hard to watch.

This is pretty much what happens when people who have just met me, even complete strangers, discover I have Parkinson’s Disease.

I may reveal it because it is relevant to the meeting, or because I feel the need to explain my symptoms. I may reveal it because I’m asked why I’m on a mobility scooter when I’m only 40, or because for the 57th time this week I’ve been asked if I’ve hurt my leg because I walk funny. I try to keep it to a pretty simple I have Parkinson’s Disease. Sometimes, depending on the situation I may need to elaborate…. “which affects my balance” or “it makes my muscles rigid and so it’s difficult to walk at times”.

It’s met with a variance of responses:
But you’re so young!
How long have you had it?
Isn’t that what that actor from Back To The Future had?

Lately though I seem to be coming into contact with more people who knew someone who had it and they have their story to tell about it. It’s not a story that ends well though and it’s a rather awkward conversation for me to have. They basically detail their pain, the person’s pain and how I’m going to die.

On the most recent account of it, I ended up cutting the conversation short because quite frankly I was annoyed that in that particular situation I was forcing myself to nod in an understanding way and listen to someone recount something that was completely irrelevant to me and served me no purpose what so ever.

It was at my own front door. A charity collector (and my haven’t they changed from the old days where someone knocked on your door with a bucket and you scrounged around the house for change to drop in and they wished you a good day and left). He was collecting for a generic cancer charity and had his best friendly personality on trying to engage me with what a lovely complex I lived in before he launched into his well rehearsed speech about how many people are diagnosed each year blah blah rely on services not provided by government blah blah my important donation blah blah yeah look dude I’ll save you some energy and stop you right there.

At that very moment I was using all my energy just to stand at the door and stopping my over excited affection hungry dog from trying to get past. I am broke. Like when my pension lands in my bank it’s about two hours before I’m back to a bank balance of $2.11 kind of broke. No I’m not signing up with my credit card details to donate every month. If you had a bucket for coins I’d probably scrounge some together to throw in but since you don’t I promise you I buy daffodils and pink ribbons and cancer council sunscreen every year but I just don’t have the capacity to sign up to monthly contributions when I can barely pay my own rent.

He understands. He tells me it’s great that I support all the causes cos blah blah blah cancer bad blah blah blah have you known someone affected by cancer? Uh.. yeah. Yeah I have. Who, what type (why why must he know all these details… why am I still standing here being so damn polite when I could just slam the door and go take the planned nap he interrupted – damn me and my polite values). Mate, there’s a list. I know many many people who’ve both survived and died from many many cancers. It’s sad. Very sad.

Perhaps he felt like he hadn’t related to me enough to reach that KPI and commission he so very much needed. He just had to drag more out of me. He proceeded to detail the kinds of services those people would have used and how without said charity they’d have very little or no support. Mate, I know what it’s like. I have Parkinson’s Disease, believe me there’s stuff all support for people like me!

Crap. I wanted to kick myself. I wanted to kick the dog. I wanted to crawl into a ball on the lounge and die right there.

Oh! You have Parkinson’s! My grandfather had that. He was a brilliant man. He did blah blah blah for a living, designed blah blah….. it stole so much from him. He was just a mess in the end. I hated seeing him like that. Shaking so much he couldn’t even drink from a glass, not even able to walk himself to the bathroom. It dragged on for years before he finally died from it.

Well we don’t die FROM Parkinson’s but yeah, the complications from it can cause death.

It killed me to watch him like that. To see a man who was so brilliant deteriorate the way he did. Such a cruel and horrible disease. I have no doubt the expression on my face spoke volumes. OH!, but you you’re so young I’m sure you’ve got plenty of years ahead of you, ummmm, how is it affecting you? Are you doing okay?

Whah? I assured him I was fine but I wouldn’t be if I didn’t get myself down for my nap before the kids came home from school, wished him good luck in his endeavours and promptly closed the door. Which I should have done when I initially cut him off. I really didn’t need to be reminded of how my life will (most likely) end. How Parkinson’s Disease is going to already is, stealing away my life from me. My independence, my freedom, my fun, my youth, my dignity.

Yes, We are very aware that Parkinson’s is a cruel, relentless disease and that it will take away so much from us and yes we are well aware that our loved ones will have to watch this while it’s all happening to us, breaking their precious hearts while our courage, our stride, our resolve and eventually our bodies.

You don’t need to remind me.

If the only way you can relate to my situation is to tell me the bad stuff, it’s probably best to keep it to yourself. I don’t need you to detail how I’m going to die. I need support. I need to be able to access my community. I need to be allowed to be on disability support pension without being labelled a welfare burden. I need to know that I can still be bulk billed for the medical services that I depend on to survive. Most of all, I need to keep up the fight.

After all, when someone reveals their cancer diagnosis, that’s the first thing you tell them isn’t it? You can fight this. Not, you’re going to die crippled in palliative care with no hair on a morphine drip.

IMG_20160330_151258

Please stop telling me how I’m going to die.

I’m still young enough to go out and get hit by a bus tomorrow. Parkinson’s is not my death sentence. It’s my life sentence.

dead fairy friday

Mobility Scooters – To Regulate is not to Restrict

I knew when I shared the news article with the No Permit No Park crowd it would stir them up. I did it because I wanted to see what solutions people suggested to the issues of safety. Not much was offered other than people need to watch where they’re walking. Which I totally agree with, but there’s a whole lot more to community safety than just personal responsibility.

The issue was raised by a NSW Senator when his wife was bowled over by a large mobility scooter as she stepped out of a shop doorway. She was injured, he was angry and rightly so. The person who hit the woman was travelling far too close to the doorways to be safe. However this wasn’t what the Senator seemed to have issue with. It was the speed. At most on a flat surface it would have been below 12kms per hour depending on the model of the scooter, it’s age and the weight of the person riding on it. The Senator posed the argument that 12kms per hour is too fast and they need to be restricted. He’s right. If we’re talking about scooters being in crowds of pedestrians. What the Senator doesn’t understand is that mobility scooters are designed with adjustable speeds for a number of reasons and should the Senator ever find himself in the situation where he does have a mobility impairment and decides to acquire himself the independence of a mobility scooter then I’m certain he will appreciate this design feature. Until he tries it though he can’t speak for us.

Mobility aides whether powered or not need to meet Australian Standards to be saleable in Australia. The regulation on use however varies from state to state and this is where the biggest problems lie.

Registered Mobility Scooter
Registered Mobility Scooter

In Queensland for example, just like getting a disability parking permit, to have your powered mobility device registered for outdoor use in public areas, you need proof of mobility impairment from your treating physician. If you have a genuine need then you have no issue with this. You only need it once only if your disability is permanent. To legally use a powered mobility device on footpaths or roads in Qld it must be registered. Why? Well, just as disability accessible parking and disability accessible toilets are inviting to people because they’re “convenient”, it was found that mobility scooters in particular were a convenient way to get around without needing a licence to drive. This seemed to be especially appealing to certain members of society who had issues with retaining a driver’s licence, in particular for drink driving. After all how many mobility scooter riders do you ever see pulled over for an RBT? To keep the numbers regulated to the percentage of population with real mobility disabilities it was decided to regulate the use of these devices. Oh, did I mention registration is free? And comes with free CTP insurance?

That’s not to say that the regulation is optimal. As well as mobility scooters, Queensland law also requires powered wheelchairs to be registered for use outdoors also. I’ve had conversations with a number of users over the years and while I personally thought since registration is free and comes with free CTP why the hell would you not register it? However after comparing the differences between the two I completely understand their reasons for not complying with the registration requirement of their powered wheelchair and I totally support them. When you compare mobility scooters and powered wheelchairs there is a significant difference between the two. One is to make life easier and the other is to make life possible. If you ride a mobility scooter but do not use a wheelchair, chances are you can still walk enough to open a door or take yourself to the non accessible toilet and for that you should consider yourself pretty damn well blessed and you should absolutely not group wheelchair users into the same category.

Mobility Scooters are designed generally for outdoor use and have handle bars on a pillar for steering. Powered wheelchairs are designed for both indoor and outdoor use and are steered with one hand using a joystick. Power chairs are very manoeuvrable and easy to use indoors. Mobility scooters are often faced with difficulty manoeuvring in small areas. While modern designs of mobility scooters see them getting smaller and more convenient to use indoors they’re still not the option for those who need continual use of a wheeled device both inside and out. They’re in lesser numbers on our footpaths and even lesser seen on the road, the method of control is significantly different to that of a mobility scooter and just for that reason alone, shouldn’t be included in the requirement to register.

A shop front showing different styles of mobility scooters
A shop front showing different styles of mobility scooters

Mobility scooters on the other hand need regulation and I doubt it will be long before we see other states following Queensland’s lead.

On the subject of restriction though, well, how much more restricted do you want them to be?

There are size restrictions for using them on public transport. This is why I chose a mobility scooter that is smaller than the size of an average wheelchair. Many shopping centres and other indoor public environments also restrict sizes to ensure the comfort of all patrons. I know when I’m walking (shuffling) around, being surrounded by groups of large mobility scooters makes walking around safely somewhat difficult. I avoid walking around in car parks, so I’m not about to rush into an enclosed space with a bunch of kamikaze scooter riders.

Restricting use to driver’s licence holders though is just outrageously ridiculous. Being unfit to drive because my legs don’t work well enough and my upper limb use is restricted does not mean I am incapable of managing a mobility scooter. Two levers, back and forth make it pretty simple. If you can walk or cycle around the neighbourhood then you can manage a mobility scooter. When you apply for registration of your scooter one of the requirements are that your doctor needs to be of the belief that you’re capable of controlling one. The downside to this is that there is no updating of this once you’ve registered like there is with your licence once your doctor has diagnosed you with any illness that may affect your ability to drive (if they’re a decent doctor). Once you’re registered you’re registered. You just keep renewing it. Although I’d like to believe that if I reach the stage when I don’t have the capacity to realise I’m no longer safe on a scooter my family will be the first to act on it.

Speed restrictions are another question. Should the speed be restricted further than it is already. While most are limited in Australia to a brisk stroll to a jog, or 8 to 10kph some are sold that go up to 12kph. The design of mobility scooters is different do that of a powered wheelchair in that a scooter will pick up speed in excess of what it is powered to do if going down hill (isn’t gravity amazing!), while powered chairs (for the most) do not. The average walking speed is around 5kph. All motorised mobility devices have adjustable speed controls however very few have a monitor that allows you to see how fast you are going. While my CTM scooter is restricted to 8kph I’ve used my mobile phone GPS to detect the speed and hit just over 9kms going downhill. I know right! Speed demon I am. Point is I couldn’t tell how fast I was going. Luckily for me (and the people around me) I’m able to judge what is a safe speed around other people. Although I am known to become frustrated in shopping centres and speed on around people who shop in herds and use up the entire corridor.

The problem with speed restriction on these devices is that the terrain we travel on isn’t always forgiving and the motors being electric have no regulator to adapt for more power required like gears or a turbo booster on motor vehicles. Steep hills, ramps and soft ground such as grass or dirt (there isn’t always a footpath) all affect the optimum power of the device.

There’s no accounting for weight and I am sure that there has to be a difference even if small, in the power used when a person of 110kgs is travelling on the same device as someone of 50kgs. Nonetheless that’s not the main reason these devices are designed with enough power to reach these speeds. Crossing roads is one of our biggest challenges. I am eternally grateful to those who stop on the highway off ramp at North Lakes when I’m trying to cross because cars rarely see me and they just as rarely do the 40km speed limit on that section having just left a 100km stretch of road. When crossing the road is like playing a game of Frogger (you Sega kids from the 80’s will remember that one) you want to know you have a little bit of power behind you.

A mobility scooter is lying on it's side under the front bumper of a car after being in a collision.
A mobility scooter is lying on it’s side under the front bumper of a car after being in a collision.

There’s nothing to be gained by the disability community by restricting our inclusion and access any further than it already is. Even though the non disabled might not care all that much about it now, well, there’s every chance they could end up joining us one day. Then they may regret those restrictions they put on their future lives.

Regulation however needs to be carefully managed so as not to over regulate something that doesn’t need to be, just creating more red tape and paperwork and of course, cost to the government. The most important thing about designing regulation is that it should be based on input and feedback from those who will be regulated; the disability community. It doesn’t need to be a 258 page document. Just basic commonsense and benefit for those under the regulation.

  • Free CTP with the Free registration is a great upside for mobility scooter users but as the incidences for powered wheelchairs are 1 to 100 for mobility scooters the inclusion of them in compulsory registration is just not feasible.
  • If speeds are going to be limited then all devices should be fitted with a speedometer. This needs to be included in the Australian Standards so that the devices aren’t sold without them or at least an after market accessory is available.
  • Better access to Occupational Therapists for those seeking to acquire the use of a powered mobility device, for professional advice not just sales advice.
  • Better access to learning support for those new to the device. It’s great to get a flyer with information but practical demonstration, tricks and tips from those with experience makes learning far easier and gives the user confidence.
  • Most of all… better damn footpaths. If paths were clear, wide and undamaged then perhaps riders wouldn’t be forced to ride so close to doorways.

If you think mobility scooter riders are a danger you’ve clearly never been to a Boxing Day Sale.

A row of mobility scooter riders one riding behind the other
A row of mobility scooter riders one riding behind the other

Epilogue:
Australian Road Rules
The Australian Road Rules state that a person using a mobility scooter is classed as a pedestrian if the maximum speed on level ground cannot exceed 10 km/h. As such the rider:
must observe the same road rules that apply to pedestrians
must not obstruct the path of any driver or other road user
must not travel along a road if there is a footpath or nature strip adjacent to the road, unless it is impracticable to travel on the footpath or nature strip
if travelling along a road must:
– keep as far to the side of the road as possible
– travel facing the approaching traffic unless it is not practicable to do so
can use shared paths, off-road bike paths and shopping malls
does not need to have a driver’s licence.

Since #Census2016 has everyone concerned about privacy…

I’ve just completed my #Census2016 with great satisfaction. I’m a community service provider’s dream on the census. I am all the needs for services in an area. They wish there were more of me to quantify their funding desires. I have a disability, I’m of Aboriginal and foreign decent. I’m the child of a refugee. I have a low income. I require assistance due to a permanent disability and health condition. I don’t work but I do volunteer. I rely on public transport. I have children. I am all the needs dependent on the community for assistance. Do I get all that I need? Shit no. I make do with what I have and I’m often pushing shit up hill trying to get anything more than the minimum, but I’m good with that. I’m a fighter these days. Lets face it I have nothing better to do with my time right? Pft

I’ve been following the whole privacy concerns about the Census this year and I still for the life of me can’t see anything different about the last time I did it other than it was online and for the first time I can put no religion as an option for religion.

I’m not worried about putting the information in an online form since now that’s what Centrelink, Child Support, ATO, Medicare and a bunch of other government departments now force me to do and they know way more about me than the Census asked. I can’t lie to any of them since they’re all connected. Centrelink tells the ATO how much money I earn. The ATO tell Centrelink if I tell them about any additional money or if an employer tells them they paid me and I didn’t report it. Child Support tells Centrelink how much money my kid’s father gives me. Centrelink tells Medicare what kind of concession I’m entitled to and Medicare tells my doctor. Medicare tells my kid’s dentist how much money they’ve given them to spend on dental work and the dentist tells medicare how horrid my kid’s teeth are. The ATO even tells me how much interest I earned from my bank accounts. Thanks to this amazing capability I found two bank accounts I had forgotten about. Nothing in my life is a secret.

When it comes to questions that are an invasion of privacy, applying for Disability Support Pension was the most invasive process I’ve ever had to go through. Some might say you don’t get a choice with the Census… well… I didn’t really have a choice about DSP either. It was that or die starving and cold in a park somewhere.

When it comes to the collection of your private information and the sharing of it there’s no guarantee it won’t be shared somewhere. It was harder for me to get my medical records from the hospital than it was for my doctor. Go figure. Whether or not you have a choice is a matter of perspective. I have a choice whether or not I want to have a Facebook account. I had no choice whether I wanted to be treated in a mental health facility. I have a choice if I want Facebook to show my email, date of birth or relationship status. I didn’t have a choice that things about my treatment in a mental health facility were recorded without my consent or knowledge.

We have a choice to sign up for a rewards program that tracks your spending habits. We don’t have a choice about our pay provider tracking our spending habits… oh… wait… that’s only for “welfare bludgers”.

Ok, let me elaborate.

The federal government are very concerned about what people who “receive taxpayers money” are spending it on. See, some people have problems that are considered of an anti social nature. Some of those people, whether it be because of those problems or not, receive welfare benefits from the Department of Human Services, formerly known as Centrelink, formerly known as Social Security. We actually have a social security Act in Australia so that we don’t end up with a (ahem) poverty problem in what is a first world country. Any one who meets the eligibility requirements has the right to apply for welfare assistance in Australia. Some (particularly in government) don’t refer to it as a right though. They call it entitlement and apparently entitlement is a dirty word in 2016. The federal government are so concerned that all the people of antisocial nature are all getting hardworking taxpayer’s money for nothing that they want to restrict it even more than it already is. I don’t know about most people but the $470 odd dollars a fortnight I use to get on Newstart Allowance didn’t exactly get me a full fortnight’s party worth of drugs, alcohol and gambling, let alone keep a roof over my head, run a car and clothe and feed my kid but the federal government are so concerned that I might spend the money of hardworking tax payers on something self indulgent that they are now seeking a method to not only prevent it from happening but also track what I might spend “their” money on.

Okay Okay, let’s ignore the fact that I was prior to acquiring an incurable, progressively debilitating and degenerative disease through no fault of my own other than the stars I stood under, I was a hard working tax payer person. I worked so hard I had two taxpayer jobs for many moons. In fact, just because I had a second job, the great southern land laws meant I would be taxed MORE at that second job just because I chose to work harder. None of that matters when you stop doing it. You’re no longer considered by these people as a contributing member of society anymore and you’re suddenly beneath them. Never mind the fact that these said people are also paid by the taxpayer and when they STOP working for it still get paid by the taxpaying peoples. Now just don’t you worry about that.

Back to the elaboration part… So concerned about what welfare bludging peoples might be spending a taxpaying person’s money on, they are trying to introduce a method of controlling and tracking what we do with the “gift” we are given every fortnight.

Healthy welfare card - how it affects payments

It’s marketed as “The Healthy Welfare Card” but there isn’t much very healthy about it. It has been outsourced to a third party to do it (the first step toward privatisation) which is a company by the name of Indue. Indue are a company that provides payment management systems. What they’re doing for our government is providing a payment management system for people on Centrelink. It supposedly works just like a VISA card only you are limited to the amount you can withdraw in cash and you can’t use it at any venue that sells alcohol or gambling products or services. You will no longer use your traditional bank account for your payment to go into. Your payment will only go on this card and this card is your only access to your (their – the taxpayers) money. Of course this invites a whole conversation about the insurmountable amounts of issues this will cause people (oh but they have answers for everything apparently) but that isn’t my most significant concern.

Since we’ve been talking about information privacy, imagine your employer said from now on your pay will only go onto a card that we provide you with and we will track every transaction you use this card for. There’d be uproar. The civil libertarians, the unions, the Privacy and Data Security Commissioner, gosh even Get Up! would be all over that shit. No, you can’t do that to people right? Well that is exactly what Indue are currently doing to people on Centrelink. No, not all of us. Yet.

There are two trial sites. East Kimberly in WA and Ceduna in SA. Both are remote communities that have issues that many remote communities face and differ from more metropolitan communities. One of the biggest issues being lack of access to support services. So naturally the results of the trial are going to translate to every area in Australia right? Cos all of us welfare bludgers are the same.

Again back to focusing on the privacy issue… when you read through Indue’s privacy policy it’s quite frightening. I can’t help but question not only why is it necessary for Indue, a third party that is NOT a government department to have so much information about me but also why it’s necessary for them to share this information with OTHER third parties.

Healthy welfare card - indue privacy mother's maiden name

My mother’s maiden name? Seriously dude why don’t you ask me for my Netflix password too? What difference does it make to me being stigmatised by being identified by a one size fits all card, which benefit I get? My own bank didn’t even ask what country I was born in. Or my marital status. And they damn well don’t need my concession card details. What business is it of theirs if I have other bank accounts? I won’t have any freaking money going into them anyway.

Worse still… why is it necessary for Indue to track our transactions? And reading between the lines of the privacy policy suggests they may provide this data collected on me back to Centrelink (I’m guessing for a fee, also paid for with money from the taxpaying peoples). Why is it necessary for Indue OR Centrelink to know when and where I get my hair cut and how much it costs? Why do they need to know I had a donut with my coffee today? Do they really need to know about that Adult Shop purchase that was a gag gift for a friend? (Hey that’s the story I’m sticking with). They already know how much medication I take and where I buy it! Why do they want to know about my multivitamins?

Most of all… why does Indue get to profit from welfare? (Interest earned from money stored in bank accounts – cos lets face it if the national welfare bill is $240M per year then that’s some nice freaking interest earned even on a standard savings account). AND – if this is a service that at the end of the day MUST be privatised…. why was this never put out to tender? (Unless I totally missed that story, and if so, I want details.)

You think the Census was an invasion of your privacy? Please. Just pray you don’t end up on this card as a welfare recipient. They’ll know where you are, when you’re there and how much it cost you. Them. Oh, you know what I mean.

 

My Bleeding Heart

It’s been a while since I’ve written. It happens from time to time. It’s either because I’m so busy, or too sick or I just haven’t had anything stir my passion enough that justified writing here. It’s been a bit of all of that of late but the past week has really stirred me.

When I was a kid I didn’t know that we were different to other families. I didn’t know there were different classes of people and that you were treated accordingly. I just treated everyone the same. I was the kind of kid who brought all the strays home. I was the kid who cried when we saw a dead animal on the side of the road. All I ever wanted was to be happy and to be included.

I was excluded from very early on though. My father left when I was very young and we had a step father. I wanted so much to be accepted I would forgive his crimes and abuse. Every time we were referred to as the step children or my mother’s children in that family I would feel myself hanging onto a rope trying to climb my way up. He only ever taught me exclusion. He was a racist bastard, always belittling us for the clothes we wore or the friends we chose or the music we listened to. He would call it n*gger music. I hate that word. I hated him.

I wasn’t the cool kid in school. I was a lot of things but not cool. I think I experienced almost every kind of exclusion there is throughout my life. Social exclusion, racial exclusion, even in my life as it is today, disability exclusion. I wanted a different life for my children and the last thing I wanted was for them to be anything like the people who excluded me in my lifetime just because of who I was, the colour of my skin, the country my parents were born in or that I use wheels instead of legs sometimes. I want my boys to grow up into the kind of men who will be great community leaders and embrace the differences in their community.

So when my child is excluded I teach him to stand up for his rights. I do that by standing up for him. Even when it means I will be shunned by the community I am fighting for him to be included in.

There have been a few occasions in different environments but none that stunned me more than the sporting club we’d been members of for over a year. He’s 11. He’s got his father’s genes and he is a bigger kid. I don’t want him to be fighting the same chronic illnesses his father is that can be prevented by managing his weight. So as well as trying to manage his diet and teach him good food habits (a battle and a half when his father teaches him bad habits), I wanted to ensure he has regular exercise. In the summer we swim. In the winter we tended to hibernate, so I went looking for a sport that would suit him.

Mr11 has already experienced exclusion on a social level mostly because of his learning disabilities and behaviour disorders, but no one knows more than I do how hard he works at trying to “fit in” and how much it hurts him that he doesn’t. He’s a great kid. Very compassionate and so witty. He has his struggles though and I was worried about finding a sport that would be understanding to his needs.

I was introduced to a club in the Queensland Christian Soccer Association. I liked their values and thought it would fit well with his needs but most of all they promoted inclusion of kids with disabilities. So it seemed, since he had voiced an interest in soccer, this was worth a try. For the first year it was brilliant. He had his moments of struggle but it seemed that the coach and the team really tried to ensure all the kids felt included. It had a very inclusive feel about it and he loved going to training every week and playing games. They were a strong team. Went through the whole season undefeated. For the first time in his life he felt like he was good at something. He knew he wasn’t the strongest member of the team. Many of the other kids had been playing for several years but he enjoyed it and he was active. The following year something changed and I know he doesn’t cope well with change, but he seemed to be handling it. The team had been boosted from a division three level to a division one. The competition was much more difficult. For the first time he experienced loss and even though other team parents feel differently than myself, I was glad to see them lose. It broke down the cockiness they had developed from not losing. Mr 11 needed to experience being a good loser as well as being a good winner. He did pretty well.

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About half way through the season, he came home from training one night, visibly upset saying he hated soccer and he was never going back again. When he calmed I managed to find out that another team member had said to him, “You’re not even a good player I don’t know why you’re on the team.” He no longer felt included. Instead he felt blamed. He saw this as meaning it was his fault they lost.

It took me a good four days to convince him he was not to blame. They played as a team, they won as a team and they lost as a team. It was no one person’s fault if they lost and certainly in no way was it any one person’s doing alone if they won. That he had strengths and weaknesses just like any other member of the team. I convinced him to play that weekend but he did so begrudgingly. I could see his heart wasn’t in it. Until they won and he was singled out by the coach for playing well. I had hoped this was proof enough to him that the other kid was wrong.

Even when they didn’t win I hoped that he enjoyed himself on the field. That he saw it as fun as much as competition. After all it was one of the key values the club and the association promoted and we all know if kids don’t enjoy it, they won’t exercise. Many of the clubs had struggled to maintain a steady membership. So what happened next was so shocking to me I had no choice but to speak up.

We had made our way to an away game. A field with no toilets, no food, no coffee and the weather turned. On arrival it began to rain. We sat there in the cold wet only to have our child along with three other subs benched for the whole game. This had never happened before. I was so disappointed for him. For them all. I could see how disappointed they were that they didn’t get a play. Most of all I was disappointed with the coach’s reasoning. He wanted to put a scoring team on the field and his language suggested that to win this was required and if this was required it “might be the way it has to be.” So effectively he was telling those four kids they weren’t good enough to play on the team.

I am not a religious person. I followed the club’s code of conduct and values out of respect. I didn’t feel that respect was mutual. The club’s values were not being shown to these kids. So I complained. My complaint was met with a that’s the way it is response, so being the kind of person that I am, I took the complaint further with club management.

I was reassured that this wasn’t the kind of practice they supported and that it would be resolved. I have to say I was really pleased with the club’s response and handling of the issue. They needed to handle it and be aware of it because if this kind of behaviour infiltrated the club it would destroy the very values and ethics the association was based on. Most of all it would drive members away. Many of us were there because other competitions and sports were too competitive for our kids’ needs. It wasn’t a selection based on skill kind of competition. It was to get more kids involved in sport.

The coach was not happy with my complaint, nor that the club reinforced this practice was against their values and wouldn’t be allowed. The next thing that happened, I can’t guarantee was accidental, but nonetheless I can’t help thinking it was fate. We received an SMS that was about us and not intended for us.

I was referred to as a “bleeding heart parent” with a “cotton wool kid”.

I was disappointed. Shocked. Most of all, I was angry. It couldn’t have been further from the truth. If I was really wrapping my kid in cotton wool then I wouldn’t have pushed him to play sport in the first place. I’d let him lay in bed playing Xbox all day. I wouldn’t be trying to protect him from losing by telling him it’s okay to be a cheerleader on the bench. I wanted my child to feel what it’s like to lose in competition. We can’t always win. We can’t always be the best at everything. Most of all, as a team, we have to support each other’s weaknesses and build on them. No, my kid was the one with the bruises and grazes. My kid has no idea what cotton wool is. He’s also the kid who has a parent who stands up for him and teaches him to stand up for himself. To stand up for what’s right.

I’m kind of fed up with this bleeding heart bullshit. If I stand up for disability rights I’m a bleeding heart. If I care about what happens to others I’m a bleeding heart. If I do whatever is in my power to stop injustice from happening I’m a bleeding heart. If I stand up for human rights I’m a bleeding heart. Until those rights are yours and then you want me on your side.

I’m pleased to say Mr11 is back to playing. He might only be a sub (when everyone else decides to turn up of course, when they don’t then he’s good enough to play the whole game), but he plays. He gets on that field when he’s sick, when he’s scared and when he’s indifferent. He faces his challenges and faces his fears. No cotton wool required. I’m so damn proud of that kid. Most of all, I can sleep at night knowing he’s proud of me. Because even though I feared I would be ostracised by the parent clique of win or die sideline parents (and some have made it pretty clear that’s how it is), I still stood up for him and what was right.

My bleeding heart beats just fine. How’s yours?

Me and My boy
Me and My boy

Cooking with no appetite

They say you should never go shopping when you’re hungry. In all honesty that’s the only time I ever do the shopping well. If I’m not hungry I come home with bare essentials that usually consist of cleaning products and regular stuff like milk bread and butter.

Since the progression of Parkinson’s Disease took away what use to be a superior sense of smell, my cooking skills deteriorated. I could no longer smell what I was cooking and naturally when you can’t smell it, your sense of taste also deteriorates. Everyone complained of burnt food bland taste and weird textures. When all you get is complaints you don’t really feel like cooking.

Lack of energy and difficulty managing motor skills just frustrate you. Eventually you reach a stage where you’re happy enough with a cuppa soup or a microwave meal to suit your needs. Which is fine when you live on your own, but no good for a growing family.

Everyone in the house now picks up the slack with cooking and cleaning and they all need to take a turn at cooking. The down side is that boys are the messiest cooks ever and I get to clean up after them, but at least they’re learning skills and have a good home cooked meal most nights.

I’m finding it really hard to come up with creative ideas or even the motivation to make anything more exciting than steak and salad for them.

I don’t feel hungry by their usual dinner time most nights. I often eat late afternoon so I just have no desire at all to cook.

 

While you were complaining about roads…

While you’re complaining about roads and being stuck in traffic Eleanor and I are trying to maintain some kind of independence in disability life on the footpaths of Moreton Bay Region. There are days I’d love to be stuck in traffic for a while knowing that eventually I will move again in a forward direction. Sometimes, the footpaths are blocked with no chance of moving any time soon and sometimes, the footpaths just end, leaving me with no other option but to go back.

The Responsibility of Inclusion

Not so long ago I posted a photo on my disability access campaign Facebook Page, No Permit No Park of a very poorly placed disability accessible parking bay at my local soccer ground. We already had one that is fabulously placed and incredibly effective. Being a very large park someone in council rightly decided another had to be added to the marked street parking area, but in doing so kind of slapped the disability community in the face. While the size and marking of the space complies to the On Street Parking Standards of 19-goodness-knows-how-long-its-been-since-it-was-updated-96, that’s where the compliance and accessibility ends. Access from the space is incredibly difficult for many wheeled mobility users. As the permit holder has to enter or exit the vehicle, well you can’t even use it as a viewing spot.
Photo of a parking space marked with the international symbol of access. There is no safe direct access from the parking space to the path.

Typical unintentional ableism, slap the international symbol of access on it and call it accessible, job done right? No. Just no.

Why should I care so much anyway? It’s not like I’m about to run out there to play a game of soccer right? No, my reason is far more self indulgent.
 
See as well as a person with a disability, future crazy cat lady and incredibly cynical and sarcastic bitch, I am also a soccer mum. Ok not in the traditional sense but I have a kid who plays soccer and I love going to watch him. I’m pretty sure he likes that I come to watch him. Most of the time. When I’m not embarrassing him.
 
So today wasn’t at our most awesome local soccer field that is for the most, reasonably accessible. It was an away game. We drove from Murrumba Downs to Mansfield to arrive at a soccer field where my estimate is that with teams and club officials there’d be maybe 70 to 100 people in attendance at any given time from 8am through to 1pm. There was parking for 11 cars in the car park. Street parking was very restricted due to clearways and no stopping zones allowing parking for maybe another 20 cars max.
 
THERE WAS NO DISABILITY ACCESSIBLE PARKING. Or paths.
 
Imagine my inner GRRAAAARRGGGHHHH when I heard the registration number of my car (that someone else drives for me since I’m not currently allowed to drive) being called to move because they’d parked in the car park but too close to the emergency exit. I was still desperately seeking coffee! Meanwhile chaos had been created by the club not notifying our team that they were not in fact playing on that field but on another one they use way over the road behind the school.
 
I tried to politely explain to the grumpy old man impatiently waiting for my driver to come and move my car because he didn’t see the NO PARKING HERE ANYTIME sign that had fallen over, that they really needed to consider that there was no disability parking available and my driver was doing the best he could to ensure I was able to safely access the field. Wait it gets better I promise you…….
See the issue wasn’t that the sign was badly placed and not clearly visible apparently, nor that there was no reasonable disability access. It was that it’s not the club’s responsibility. True story. The grumpy old man told me to “take it up with council, they’re the ones who haven’t done it.”
Sure, this may be true. It is council property. It is council responsibility. Are council aware of what is needed at this particular park? Who knows. Clearly no one thinks it’s their problem so no one has bothered to raise the issue with council.
Here’s the thing Sports Clubs…. if you want to be inclusive, you need to take on some responsibility for inclusion. I’ve been to sports fields all over South East Queensland and you just can’t pick it when it comes to disability access. The ones you least expect to be accessible way out in whoop whoop country backwinds of some outer region are often the ones best equipped! Yet here in the big bad city with all the bling I turn up to find myself having two choices. Watch from a distance through the telescopic lens of my camera or allow my dignity to be lost to having someone carry me the distance, or hope that if I do decide to use the inaccessible toilet facilities I am able to get up by myself and not have to call out and ask some random to go fetch someone I know well enough to help me up out of the seat and pull up my pants.
Most of the time I can manage on my own…. for now. As I deteriorate I am well aware that those days are numbered. Regardless, I am also well aware that if I can’t manage, then many other people with disabilities would be even more excluded than I am.
The kids on your teams may not have disabilities. Your club may not have a specific program for kids with disabilities, but these kids playing, they have parents and sometimes, those parents are people just like me. People with disabilities. Clubs often wonder why they can’t get more kids involved in their club. More kids more fees, more fees more money to spend. On upgrading the club facilities. You make it impossible for some kids to get involved when their parents cannot access you.
 
It doesn’t take much to get some action on disability access though, when you’re leasing a council asset. If you’re prepared to ask council to mow fields and install toilets, if you’re prepared to pay the fees for the lights for training of an evening, then be prepared to assume responsibility for disability access and demand that council provide it since after all, you’re the one paying the rent.
The only assistance we were offered was being told there was parking over the road at the school. Looking across the road I saw a driveway with a locked boom gate. Our team hustled across and down the boom gate blocked road toward the soccer field they were required to be at while I shuffled along behind carrying my bag, blanket and coffee and trying in vain to not fall on my face. I was stopped by a soccer dad who very kindly gave me directions on how to get my car through the school using another driveway further down the road and driving around the school to a car park that was closer to the field we needed to be at.

Very grateful for his assistance I got my driver to drive me around following kind soccer dad’s directions and low and behold there was this magnificent parking lot fully equipped with disability accessible parking, parking for buses, parking for you, me and pretty much the entire club all just a few 100 metres walk away had they put out some signage giving people directions on where to park. Totally oblivious to the fact that the reason they are there to play is because other teams who are not familiar with their facilities are driving miles out of their comfort zones to be there.
Meanwhile, across the road, parents with disabilities are not signing their kids up to the soccer club because no one cares that on appearance it looks like there is no disability access.
Photo of the international symbol of access with a NO symbol painted over the top of it showing that this path is not accessible
Photo of the international symbol of access with a NO symbol painted over the top of it showing that this path is not accessible
I had another rather heatede public discussion with a football club once, after someone had posted a photo of a coffee van parked in their one and only disability space in the car park on instruction by the club manager. The club manager did not appreciate it when I made a very polite attempt to educate them about discrimination. They told me since THEY and not council were the ones who put in the disability parking space when it had been brought to their attention that there wasn’t one then THEY could do whatever the hell THEY wanted with it and if that meant putting the coffee van in it then so be it. Besides, there was plenty of other parking and THEY didn’t see anyone needing to park in it. True story. This actually happened. On the Facebook Page. It just so happened that the reason the photo was posted in the first place was because a grandparent wanted to watch their grandson play football and were, in fact, told they’d have to struggle on with whatever was available because the coffee van had permission to be there and the disability parking permit holder, well, didn’t.
I know I know. Please someone stab me in the eye with a blunt object so I don’t have to keep writing this crap.
Come on sports fans. Get onto your clubs. Ask them if they have a disability inclusion plan. If they don’t, strongly recommend they should consider it. They just might get more people signing up.

Sugar Soaped Sex-Ed

When I was young and my head was filled with fanciful, romantic ideas of my first time and how wonderful losing my virginity was going to be, television was still a pretty highly censored domain. That was mostly how it had been depicted to us through movies and television soaps. If only I’d seen Puberty Blues when it was first released in 1981 and not years after losing my virginity. Which was so not the fanciful romantic ideal in my head.

My parents’ idea of sex education was handing me “The Little Red School Book” circa 1970s (this was in 1986) and telling me to read it and ask any questions if I had any. My step father also referred to the first boy I ever had a crush on as a wog and asked what was wrong with the Aussie kids and “accidentally” put on a porn cartoon in front of my younger siblings and me when I was 11. From the start sex in our house was treated as something that was shameful. Talking about sex was even more shameful than the act itself. So I read the book wide eyed and fearful but I never asked any questions.

I spent my teenage life waiting for Prince Charming to turn up on his white steed and whisk me away from the wicked witch and her mangy toad and we’d flee to the castle and live happily ever after. I’m one of the few girls from my low socio economic suburb and disadvantaged high school of a single parent family living in public housing, to graduate from high school with her virginity in tact. However after 6 months of dating Prince Charming I decided it was time but there was nothing fancy about it. Maybe a tad of romance until I stated my surprise that there was no blood like I had been told there would and he looked at me weird and I said I’d been told girls bleed a little when they lose their virginity and he freaked out cos he thought I wasn’t a virgin even though I thought we had a clear conversation when I said I was a virgin and he said it was okay cos he was too.

No time for shattered dreams for this Princess though cos the second time I not only did bleed but it hurt so much I couldn’t walk properly for three days.

I hated it. I seriously could not understand what all the fuss was about because it was not enjoyable. Whether or not it was curiosity or my own damn lack of confidence at the time that if I didn’t give him sex the relationship was over but yeah eventually it got better. And then worse. And then better. You know. Life’s like that.

All of this was a distant memory hidden in the dark past I rarely resurrect until I was watching an episode of Home & Away (the kids like it, don’t judge me), with my son who turns 12 in a few months.

One of the female teenage characters, Skye, sits down with excitement to tell her friend Olivia all about how she’d just had sex for the first time. She’s all giddy and cheery and describes it as wonderful and how he was so caring and gentle.

I watched the blank face of my preteen and realised this right here was the same sex education I had as a kid and I needed him to know the truth. The ad break came and I turned to him and said, “Don’t let this show give you any delusions about sex and relationships buddy. I can’t tell you what losing your virginity is like for boys, cos I’m not a boy. You will have to have that discussion with your Dad.” (Preteen made a face indicating that would just be gross but I continued). “I can tell you from a girl’s perspective though, that we do not walk away skipping and starry eyed and tell everyone how wonderful it was. We probably sit on the floor of the shower for an hour and then go back to bed with a hot water bottle. It’s not really all that nice. It can be awkward and painful.”

Naturally Mr preteen wanted to hear none of this! “MUM! I DO NOT want to hear about your sex life. At all. Ever.”

I tried so hard not to laugh. “Well I don’t really want to share it with you but I want you to know the honest truth. It’s important. You need to know these things even as a boy, because one day a girl may lose her virginity with you. I want you to understand that it might be weird and awkward and she may not be filled with delight about the whole event. I don’t want you to feel like you did something wrong. Cos it’s just the way it is. I also want you to understand that it’s just another reason NOT to pressure a girl to have sex with you. Cos even when we think we’re ready, it’s still not an entirely positive experience. So if a girl isn’t really ready, it could be even worse. Do you understand?”

The ad break was over, he nodded and said, “Ok mum, can we please stop talking about sex. I don’t even want to think about it.”

I know that will change. I know that I will eventually sit him down and we’ll watch Puberty Blues – or maybe the more updated TV series – and I hope that somewhere along the line I will give him the opportunities to learn the realities of sex and not just the Sugar Soaped versions that romance sells to us.

Please script writers…. if you want to know how to express real life situations in your soap dramas about teenagers… maybe you need to get in touch with your teenage self again. It’s two thousand and sixteen. We’ve come of age now and it’s perfectly okay to talk about sex.