Wreck-It Ralph: The Parallels of Disability

Wreck-It Ralph is a movie by Disney Pixar, released in 2012. It's a really great film for the whole family: there is arcade nostalgia stirred up for the oldies and all the joys of Disney Pixar for the young'uns (or oldies, let's be honest...). I'm not going to lie... It is one of my favourite movies.

The story line of the movie is about a sad, "bad guy" Ralph who, after 30 years of being the bad guy, is lonely and ready for change.He leaves his own game, 'Fix it Felix, Jr' in search of a medal - to prove to the others that he is a good guy. This task proves not to be straightforward, of course. He "game jumps" to a game called "Hero's Duty" and gets his medal without too much difficulty, but from there causes havoc and ends up in a game called "Sugar Rush". From there, more adventure begins. Ralph meets a girl called Vanellope Von Schweetz. Vanellope lives in Sugar Rush, a racing game, but she is an outcast. She is not a racer and simply referred to as "the glitch", due to her tendency to, well, glitch.
I really enjoy the rest of the plot, but I will skip ahead to the ending where Vanellope does become a racer. However, her glitch doesn't go away - she learns to live with it and use it to her advantage. That's the point I really want to make.

I love this movie. I have watched it too many times. I recorded it on TV, and watched it many times and then my friend Luke gifted it to me on iTunes. It is on my iPad and iPhone, and I watch it whenever I want. I enjoy watching it whenever I feel sad, down, nervous or any general negative feeling.

The above is a picture (an old one) of my AAC. I use PogoBoards, and will talk more about it at a later date. But as you can see, Wreck-It Ralph has the prime position.

The reason I love the movie is nothing to do with how much I would love to live in a world made of lollies like Sugar Rush. It is nothing to do with the awesomeness of the character voice by Jane Lynch. It is to do with Vanellope, her friend and her glitch. It's true: I see myself in a Disney Pixar character, I see who I want to be: and this is why -

1. Vanellope has a disability. People believe that this means she cannot do much and that she will never be a racer, her dream. Her dream is so strong and she makes it. She proves to everyone that she can do it.

2. Vanellope's disability doesn't go away. There is no fairy godmother. There is no magic potion. At the end of the day, she still has a glitch but instead of seeing it as a problem she sees it as a superpower. Okay, relating that to disability is possibly the cheesiest thing I could ever do, but you know...

3. Ralph is Vanellope's friend, and at first he is a bit confused by her glitch but soon after, he doesn't care. He sees her as a person - as much more than a glitch. I often tell my friends that they are Ralph, and I am Vanellope. I have some of the best friends. I have one friend who does transfers with me the best, one friend who can position me when I am sitting the best and one friend who cooks the best food. I have the best friends. All of them are Wreck-It Ralph.

4. I like Vanellope's style. I want to be able to pull that off.

You can always find parallels to disability in a lot of things - in books, in movies, in almost anything. People have been talking about seeing it in the song "Let it Go" in Frozen (I see other parallels for that, for my own personal experience). But this is what I see in Wreck-It Ralph. If you haven't seen Wreck-It Ralph, you should.

And Wicked, the Broadway play. That's another one. But that's a post for another day, too.

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When Political Correctness Turned Ugly

In Australia, I feel like the entire Special VS Inclusive Education issue seems to be less of an issue. I don't say that to sound at all "better than America" because I don't think that's true. We don't have special education classes within mainstream schools, so I think that is why it is less of an issue. You have mainstream classes (with additional support, if required) or you have special schools. You also always have the option to homeschool your child.

Shock horror: it is completely possible to fully support mainstream, inclusive education AND special schools at the same time. I definitely do. Every case is unique, and some children are going to benefit most from being in mainstream schools and some are going to benefit most from being in special schools. There are lots of factors that need to be considered, but having the option for both is something I consider very important.

I support them both, much in the same way I support mothers who breastfeed and/or bottle feed - as well as I support mother's who tube feed and use TPN! Sometimes, I see people get so hung up over the breast feeding VS bottle feeding issue and I simply think: shouldn't we a) be grateful that your child has a swallow reflex and muscles strong enough to take the breast or bottle and b) congratulations! you are giving your child nutrition! you are succeeding as mother! But I digress.

Recently, I got a very angry and very rushed email from one of my employers. It is from a vacation care that I work at, based at a special school and classed as a disability service. It is only for children with a disability. The email was sent to the entire staff and it was from the two supervisors.

They quit. They had been told their contracts may not be renewed.
It sounds like new people had come in and want to dissolve the vacation care program, and hand back the funding. They gave various reasons as to why, which I will tell you now and tell you every reason why I think those reasons are wrong:

"Services that only cater to children with a disability are not inclusive and will not be supported by the company"
1. This is the children's school, and it is their vacation care program. No other schools open their arms wide for children outside their school to attend their vacation care program, so how are those programs inclusive? We already accept children from other special schools as well as mainstream schools, with a diagnosed disability - so in many ways we are doing inclusive.
2. There are heaps of programs for adults with disabilities, heaps of services for them. This is one of the few times when adults with special needs probably get more available to them than children. Nobody ever accuses those services of not being inclusive. Children need these services too! They were created because the children need a high level of care that not average-Joe could provide to them, and parents need to work.

"Services for children with a disability which are based at special schools mean that children never leave that environment and won't be supported by the company"
1. In mainstream schools, children who go to before-school care, after-school care and vacation-care don't get this much concern. Why is suddenly an issue for the company?
2. You have no idea what we do in school. We go on a lot of excursions - definitely more than mainstream schools - we experience multiple environments, so don't you dare say that is the only environment they experience.
3. The children do go home on the weekends you know...
4. The children are in vacation care because they need to be. Their parents work. Not every child from the school is there at all, and rarely are the children in everyday of the week.
5. Some of the children come from different schools anyway, so they are experiencing a different environment.
6. We spend all our time during vacation care in the playground, gym and multi-purpose area, and area that we never get to spend enough time in during school time. We don't even go near the classrooms.

"Services for children with a disability which employ their teachers as staff mean that children never get to experience anything else and won't be supported by the company"
1. In our program, I was the only person who had anything to do with the special school who worked there. I am not a teacher, and I am only in school generally one day a week. There was only one student who I worked with on a regular basis. This student actively sought me out everyday, I was able to stop other workers one time when the student was in a situation they should not have been and if the student did not want to be with me, they had multiple other staff members to go and play with.
2. How awful for someone who knows your child very well to be working with them. What a shame that you feel safe and comfortable leaving your child at a service.
3. Again, we didn't even have any teachers at our program...
4. The chances of the child's specific teacher working there are probably quite slim. And then there are other children there too, so they will be busy with them.

The company has refused to have a forum with parents. I think my supervisors sent out this email to everyone to get them to rally with them.

My problem is: the children really have nowhere else to go. No mainstream school vacation will take them because a) they don't take kids from outside their own school, and b) they are not set up for it. It's not an issue of being inclusive, it's that they don't have a hoist or change tables or training or the staff ratio.
We have the facilities. We have the soft play rooms. We have the accessible playgrounds. We have the training.

What is the real problem???? TELL US.

A Belated Post: "End the Word"

Very recently, many blogs I follow were alight with their point of view and their support for the campaign "End the Word". I have been too sick to post much, or even to read much. I have been whiling away my time watching far too many episodes of ER and shamelessly re-watching the movie Chicken Run repeatedly. But now, I have found new strength. I have just now eaten half a mug of gluten-free, MSG-free noodle soup. That is currently a big achievement compared to custard and water.

But on this topic, I definitely feel a "better late than never" approach is warranted. Fair warning, I will be spelling the word out several times so if you do not like to even read the word, I suggest you stop reading now. 

Words are one of our most powerful tools.  An arrangement of letters can be one of the most beautiful blessings or suddenly a terrible curse and the word "retard" has been poisoned over the years to fall into the category of curse. It is now an offensive label. I definitely don't support the use of it, much like I don't support the use of calling someone "autistic" instead I say that they "have autism". 

But, I am around a lot of people who use the word "retard", "retarded" and "retardation" frequently. They don't use it with a trace of intended offence, they use it in a medical or psychological setting. My lecturers and tutors use it a lot (I am studying a bachelor of Psychological Science). Not just in terms of mental capacity, but also terms such as "psychomotor retardation" meaning what the word was originally intended to mean - a deficiency. 

But, sadly, although in that safe setting we use it in the original meaning - it's been so twisted and changed to an offensive term that it isn't okay to use. I am thankful for lecturers who say things like: "the old term is 'mental retardation', but now we use the term 'intellectual impairment'". But who knows... One day the term intellectual impairment will probably become offensive. It probably already is offending someone. We can't get it perfect. 

The problem with older lecturers using the term is that it then passes on to younger teachers and so on. The new DSM-V, which is the Diagnostic and Statistical Manual of Mental Illness was recently released - and the words "mental retardation" are not found in it. We are making progress.

I also find when working people from different countries and different cultures that they use the word more easily too. Am I in a position to be annoyed at them? Should I be trying to force them to conform to my culture for the brief period they are here? Why is my culture necessarily the correct one? Of course I should tell them that the word is considered offensive (I think it would be mean of me not to - especially when English is their second language), but here we hit an issue of cultural sensitivity. What if we go into another culture and a word we use easily here is offensive there? What if the word "disability" is dirty, and they have a different word? Then we are just getting into areas that are confusing...

I want it known that I support ending the word. It's not as simple sometimes as we would like it to be, I don't think. Sometimes the more we don't want a word to be used, the more power we give to it.

Just an example of how something gets a lot of power when it is forbidden. It is one of those psychological facts.

But: I don't use the word myself.

And that's where the change starts: with me.
And with you.

One person at a time, change will come. It mightn't be easy but in the wise words of Albus Dumbledore:

Soon, we must face the choice between what is right and what is easy.

The Paralympics

Tonight was a warm night in sub-tropical Australia. I lay outside with my brother and mother sitting nearby, and my dog off exploring the great land known as our backyard. I was lying down, feeling sick but still managing to look at photos of food. My brother was sipping a beer and also sitting on his iPhone and my mum flicking through the TV guide. 

Mum starts telling us about shows on and squeals to my brother that Downton Abby is on tonight. Then she says:

"The Paralympics is on, did we all know that?"

My brother answered quickly: "yes, but only for about half an hour a day"

Mum: "you're right!"

We went on to say how shocked we were. And, I am. 

For weeks leading up to the Olympics, we had to put up with thousands of ads and hype about it. Free to air and cable tv both bought certain rights to the Olympics and, any time of the day you were guaranteed to have something to watch. 

I don't mind this as such. I remember the Sydney 2000 Olympics with great fondness even though I was only 6 years old. We watched them everyday after school but we also watched the Paralympics and loved it. The Paralympics had their own Australian mascot too. 

So what's happened?

My mum and brother said they would prefer watching the Paralympics. So would I. 

What an excellent chance for disability advocacy and acceptance...

For half an hour a day. 

Am I the only one who has a major problem with this?

I Make My Own Arm Brace

Fun fact about me: I am a university student, I am 20 years old, and while I do work very hard - I have very little money to show for my work. Between trying to enjoy going out for dinner with friends and paying for my car that broke down yesterday, I don't have much money left.

Like a lot of people with disabilities I have plenty of things I want and need. I prioritize. I make sure I buy my meds every month. I try to have money spare in case I need to go to the hospital. I pay for my subscription to my AAC (PogoBoards). I am saving up money to buy a medic alert bracelet. AFOs are in the future. One thing that I started to need, but was not in my budget, was an arm brace for my left arm.

My left arm prefers to be in a bent position, to the point where it is now causing other problems. To make things more complicated, I am left-handed. I need to keep my strength and function in my left hand and arm.

But an arm brace wasn't in my budget. I genuinely live pay cheque to pay cheque.

But I build a lot of things. I have built tools for special school in the past, and now I have built an arm brace for myself using only: plaster wrap, faux fur, cotton, velcro. Only about 10dollars worth of material, and it took me less than a week to make.

That photo shows how it start: a piece of faux fur, with some plaster of paris on top. The faux fur is to stop it from rubbing.

I then covered it with cotton, so that I would not get overly sweaty when wearing the brace. As you can see, there are two braces here - I did it in a clamshell style design.

And this is the final product. Is it neat and tidy? Definitely not, Does it look professional? Nope.

But it was cheap, it was easy and it works. I also personally like the pink and blue with white stars. 

I try to wear the brace everyday. It's not enjoyable wearing it, but it is for a better purpose.

Disability: inspiring creativity.