I let myself be teased (and I tease myself!)

It's been a long time since I have written anything, but I suppose the mantra of "if you don't have anything interesting to say - then don't say anything" applies. 

But sometimes in my life I do have something that I consider interesting to say, but I still can't get the words out. I can make a lot of noise or jump around in frustration, but the words still won't happen. 

This is living with aphasia. 

I am still young, 21 years old and nobody looks at me expecting me to have a diagnosed disability. I hide my hemiparesis quite well, to those who are not trained to see it but the aphasia can be impossible to hide. As a result, I live with people teasing me. 

People might read this and feel sorry for me. Thats not my intention. I live in Australia - a culture of friendly jabs and pokes. People cannot be teasing with malicious intent when they are unaware of what they are doing, so I prefer to take wisdom from Elsa and "let it go". There was a key example of this at Charmaine's twentieth birthday. 

I had a really nice time at Charmaine's birthday. It was so nice to spend time with her, her family and friends. I was especially excited to see her sister Sam, who I don't see NEARLY enough and of course, the latest excitement, Sam's boyfriend who I had not yet met!

As soon as I met him, I liked him. Instantly. He was different from other boys she has been with in the past, but for the best reasons. I was very excited. I turned to Sam and in my excitement I tried to tell her what I though. 

"I - I - I - I" I said, struggling to get my next word out - a mix of excitement and aphasia. 

Sam was wonderful, as she knows almost better than anyone about my struggle and waited until I could find the word "approve" and tell her how much I approved of her boyfriend. 

But in the same night, there was good-natured teasing that came from her boyfriend. Having taken a liking to Sam's boyfriend, I was chatting animatedly to him when I lost my words. 

"Um, um" I said

"Yes, use your words!" He laughed playfully

There was no malice intended. How can someone be malicious without knowing what their words mean? How could he have possibly known? In the middle of the party, I wasn't about to educate him on aphasia and make him feel uncomfortable or awkward. You have to laugh at yourself sometimes. Otherwise, it'd be a never-ending pit of frustration. There is a time and a place for education and advocacy. That was not it. 

I make no excuses for myself. I do not allow aphasia to control anything for me. Often, I will lose my words and be silent for a bit and end up yelling out "UGH ENGLISH!" And then move on. I like to laugh at myself. We all should. My disability is a part of me, so yes I laugh at that too. I am not bitter or broken. 

In fact, I am achieving great things....

Hand writing - a dying art.

For those of you who read my blog regularly, you will know that I have hemiparesis on my left side. In the past 10 months, I have worked really hard at building my strength back into my left side and compensating with my right side so that it is not noticeable.

In so many ways now, it is not noticeable. My gross motor skills and strength are excellent. I am possibly the best in my job (and most humble!) at manual handling skills - and by manual handling, I am referring to human beings. Some of the boys are a bit better than me, but for quite a short girl with a slightly weird walk - I am pretty good and I own those skills. I always passed driving requirements, medically speaking.

With my fine motor skills, I am still working on them. I think I am dropping things less than I did. My arm prefers to be bent and my wrist dropped. This is still true, but it is less so than it was. I am working on putting on make up. I am doing this for two reasons.
1) Fine Motor Skills: it's an excellent way to practice my fine motor skills - and just to clarify, I am naturally left handed
2) Self-Esteem. I am not saying you need make up to look and feel good, but in my case I definitely had gotten into a bit of a rut with taking care of myself and this is an exercise that is helping - slowly but surely.

I am also doing activities like straightening my hair - but I am still doing that right handed for the moment, or getting help with them. Slowly but surely.

I had my 21st birthday the other week, and I had a party. It was fun - a clash of different parts of my life, and it was rather a strange and honouring experience. For those who saw on Facebook, I ended up wearing the sparkly silver flats over the jelly shoes - it was a good compromise that my mum and I came to.

Three Best Friends 

"Other Family" - Charmaine's Family. I had done my own make up but had needed help with my hair.

And I was showered with very generous gifts! It was overwhelming and now I am writing thank you notes to everyone for their kindness and for their attendance.

Secret fact about me: I actually have beautiful hand-writing. It isn't well known. Grandmama and Mama keep looking at shock at how neat my hand-writing is. It is taking me a very, very long time to do. It is very difficult to get them to be so neat. I can only two notes before having to take a break. I find it does not only strain my left hand, but my right hand clenches as well.

But - it's such a sense of achievement for me. I can type a blog post in the space of five minutes, but these 20 or so notes will probably take me a week.

And I am going to do it! Just watch me!

My Love for Light Up Sneakers

The other day my life changed forever (I don't think I am being overly dramatic). I discovered happiness I never knew possible (Still not overly dramatic). I was lying in bed, although it was not yet bed time. I was simply not feeling well and took the chance to have a rest, when my Mum came home. She came into my room to say hello and show me what she had bought. I never guessed she had bought something for me.

Out of a box came these gorgeous, sparkly, velcro-tabbed, purple, pink, blue and silver sneakers. I could not say a word. I only gasped and smiled, my love of these shoes knew no boundaries.
Suddenly, Mum turned off my light in my room and threw the shoes on my bed. When they landed, they flashed and lit up. I squealed and squealed. It was like Christmas, Easter and my birthday all in one.

After squealing, squeaking and thanking Mum profusely, I proceeded to text almost everyone I knew to tell them the good news. My conversation with Luke went like this...

She Types Things: LUKE!!! I GOT SNEAKERS AND THEY LIGHT UP AND THEY'RE SPARKLY AND ARE VELCRO TABBED!

Luke: Haha, that's awesome. That's like 5 year old you dream come true.

She Types Things: No. It's more like 20 year old me dream come true.

And it is true. It is a dream come true. I want to wear the shoes to work (I do sometimes, depending on the client), I want to wear them on dates (haha - what dates), and I want to wear them to my 21st birthday (Mum's disapproving look means I probably won't).

I love things like that. I love little things that make me happy. True enough, the other day I went to the shops just to buy some red cordial (I also bought a Scooby Doo toy for $5 because it was just too good not to). I have my nails painted pink. I like to laugh.

Life is too short to be grown up all the time, but that is not the only reason I love my new shoes. I think they should be a physiotherapy tool.

The sneakers light up when they have enough weight on them. They light up on most steps, but if my weight is in the wrong place then it won't. The other thing about it is that it makes me look at where I am placing my weight.

When my sneakers only light up on the right side, I know my centre of gravity is too far to the my right. This isn't uncommon for me - I don't often realize I am doing it. But now, thanks to the most awesome sneakers in the world - I do. I am able to fix my walking and bear my weight more evenly.

Therapy is most effective when it is in the form of play.... or fabulous light up sneakers.

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Disability Perks

Disability perks is a phrase that I really stole from John Green, from "The Fault in Our Stars". He talks about cancer perks in it - about the things that people give to children and young people because they have cancer. It's an interesting concept, disability perks - especially when it comes to children.

The other day I went with one of my jobs to Seaworld, with 8 children and 7 workers. Two days later, one worker and I went with two children. It was exhausting. It was great.
It certainly wasn't the place for all of our kids - one of them really had a bad day. He didn't enjoy himself. Others weren't too fussed on Seaworld, and some of them absolutely loved it.

When I talk about disability perks - I am not talking about equal rights. I am not talking about accessible parking or accessible bathrooms. These are not perks - this is equality and basic rights. I'm talking about those little things extra.

I am talking about the people who give the children an extra bag of sweets, because they're in a wheelchair.

I am talking about the people who stop the characters in dress up to take photos with our kids, and shoo away all the "able-bodied" children.

I am talking about the fact that the children with the wheelchairs got the pathways parted for them like the red sea (but not those without the visible disabilities.)

Some people think those perks are sweet and kind. Disability perks kind of get under my skin a bit. I think it is just another marker of society not knowing how to treat people with disabilities and not simply seeing them as children.

But, am I going to actually say no to them?

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Disability Does Not Discriminate

Discrimination and Disability are two words that we often hear in the same sentence. Those words are great mates and seem to go hand-in-hand with each other, like salt and pepper or bacon and eggs.

We are used to it at schools, in the workplaces, and even society in general. Places without wheelchair access or disabled toilets are a wonderful example. There is no need to make room for the seemingly "few" who need it, compared to all of "normal people". Mama Lewis can tell you a story or two about discrimination: from shopping trolleys to child care.

Because having a physical disability is also about competing in death-defying stunts to get places.
Picture

Discrimination is as ugly as prejudice, and seems to happen simply because someone is different from you and what you expect all people to be. It can be for many reasons: race, religion, sexuality, age, gender or, yes, disability.

But the weird thing is how much society discriminates against disability, when disability does not discriminate.

I am not talking about people with disabilities. They can surely discriminate, because people can suck. Having a disability is no exception to this, as I talked about in my previous post. But disability itself does not discriminate.

I have heard the expression before, but never fully understood it until recently. I work with a lot of different people who have different disabilities. Of my 5 regular clients, only one has Australian heritage. The rest have heritage from all over the world: Africa, Asia, Europe...

My clients range from children to fully-grown adults. I have male and female clients. I have clients of all different religions and faiths.

Disability does not discriminate. Disability cannot discriminate.

Nobody chooses to have a disability. Disability does not go around and choose people. There are many reasons why people have disabilities, but neither of those are true.

Why do we,as a society, discriminate against disability, when disability is discriminates against nobody?

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My Special Students are not Sweethearts

I work with a lot of different people in disability services, so in turn I see a lot of different disabilities. I am interested in all of my work really, and try not to limit myself. But I never forget where it started, and continues to this day, with one day a week at Special School.

At Special School, in my particular classroom, I have students who have severe physical impairments but who also have brains much brighter than their bodies. I sometimes classify this as the cruelest turns of fate, to be in a body and you want it to work but you know it doesn't and it won't. It is different from Autism, which I heard beautifully put as 'seeing life through a different window, not understanding what you see, and nobody understands it either' (a generalization, but holds true for many people I know). It is different from intellectual impairment.

I know my students well. They are getting older, so I like to refer to them as my friends. They are all clever - much cleverer than people give them credit for. They can be lovely, but not always. They are teenagers and I remember my moodiness as a teenager all too well.

What I cannot stand is upon a minute of meeting them, someone who says "Oh bless them, what sweethearts!"

One of my students is, I'll give you that much. She is a sweetie, and she is often happy, and she is quick to smile and laugh. She is sweet. I'll even let you say she is a sweetheart.

But one of my other students that I can think of? Sweetheart is not the first word I would think to describe her. Bright, vivacious and bitter. I know her. She is currently limited as we unlock a key for an effective communication device, and this can make her angry. Would you call any other high-school aged student a "sweetheart" moments after meeting them?

One day, a friend of mine who is studying to be a social worker wrote this on Facebook

"It never ceases to amaze me how much people with disabilities despite all the discrimination they face on a daily basis are still some of the kindest and friendliest people I know."

That's coming from a social worker. A mass generalization on all people with disabilities.

I work with many different people. Guess what? I get bitten. I get spat on - purposefully, too. I am often covered with bodily fluids (nobody's fault). I get yelled at, by other carers. I try and stop self-injurious behaviours. I listen to a lot of squealing. I sometimes have to run a lot.

Sometimes I work with sweethearts. Sometimes I work with real cool cats. Sometimes I work with a mate or a buddy, and everything in between.

It's not glamorous. There is nothing romantic about this.

My Special Students are not Sweethearts, simply because they have a disability.
I've gotten it before too. I know my friend Emily from Words I Wheel By gets it too, as does her mum.

Any assumption about a person with a disability: that they will be sweethearts or not is a massive and unfair overgeneralization. We should be seeing a person before a disability. When we judge or assume that someone will be one way or another because of their disability, no matter what the disability, we are not being person-first.

And clearly, sometimes even social workers need a reminder on that.

AAC: Pogo Boards, A Review

Lately I have made the jump to a new AAC (Augmentative and Alternative Communication speech device). Although I do not have to use my AAC to get through most days, when I do need it I definitely need one that works effectively.

It is easy to get frustrated with an AAC. When it is too complicated to use or if it does not have that things you wish to say. 

I have used several AACs. For my own personal use, I have always used AAC apps for the iPad or iPhone. One that I have used for a long period now is "Pogo Boards".

Pogo Boards was a great AAC for me. I was very fond of it, or "her". I affectionately refer to the robotic voice as "LucyPogo". There are many great parts about LucyPogo...

Some of the positives include...

It is fully customizable. You can adjust everything on the Pogo Boards app. All the grids, multiple different voices, different languages and all that. You can adjust the size, the speaking rate, the amount of buttons on the grid...

You can share the boards with friends and the world very easily by saving the folders to global folders. This can be a very useful feature.

You can use the app on multiple devices. With my subscription, I could log into 4 devices at one time. I only ever logged into my iPhone and iPad.

I love any device which uses Text-to-Speech features.Anything where speech doesn't have to be recorded is a good app in my book.

Unlike Proloquo2Go, you have the ability to display a different message from that which is being spoken This was useful particularly with pronunciation.

PogoBoards use SymbolStix and have thousands of icons available.

There are many boards that you can either start with as a basis or use as fully functional boards. Or you can go again by yourself from scratch...

The important messages best friends need to say to each other... the app would never capitalize the L in Luke for some reason...

Pogo Boards can be used for other devices not just for iPad and iPhone. You can also print out the boards you make and use it as a low-tech devices.

The staff are really friendly and quite prompt with their replies. They are also very helpful with providing you with other resources.

It's not a perfect system. If it was, I would probably still be using it. I really do like it. But I also have some problems with it...

You can only edit Pogo boards from your computer. You cannot edit it from your speech device.

It is subscription based. This was a big issue for me. The subscription is not much really, and you can pay monthly, yearly, every two years or every three years. I don't have much money. I seriously don't, I couldn't afford a yearly subscription so I had to go with a monthly subscription. Although it wasn't a lot, it just kept adding up for me and I had to say no.

It is a bit faulty. Sometimes, the system would not let me log into my iPad or iPhone. It would say I had "exceeded my amount of maximum log ins", which wasn't true. It was an easy issue to fix, with a quick email to the the staff. But it was a pain nonetheless.

My home page (an old copy from last year) as it appeared on my iPhone

My Core Page for my iPad

A copy of my "People" page from my iPad

My final thoughts on Pogo Boards? If you are an educator, this is a really good system. The more people you have using the system, the cheaper it gets. It is so customizable and I really set mine up for me. Like all AACs, it took a while to set up and I never perfected it. Unfortunately, the drawbacks of this system for me meant it was time to try something new. More on that soon...

Note: Even as I looked through my photos, I didn't have photos of my latest most customized version. For example my iPad page of people normally has the three chihuahuas from Charmaine's house on it. Because, you know... priorities...

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Being Disabled VS Having a Disability

The other night, Mama Sharon (Charmaine's mama) asked me a question and I didn't have a good answer for it. She had been reading my blog and wanted to know, "Why do you see yourself as disabled?"

And I suppose the truth is, I don't.

I think I used the words once for a blog title when speaking about unrequited love on Valentine's day and I wrote "I have a crush (I'm disabled, not dead)" because I think I am super cool when I use catchy titles like that (alliteration for the win!) but generally I don't say I'm disabled because I mostly don't think of myself as disabled.

By all medical accounts, I am disabled - I have been since I was a child and here is why:

As a child I was diagnosed with multiple chronic illnesses, forcing me to miss a lot of school. Cumulatively, I missed over a year and a half of schooling.
I am not disabled because I completed my schooling. I completed it in anyway I could, and I completed it with quite a good mark too. I got into university, and I am almost completed university.


As my neurological symptoms progressed, there is many more reasons I could list as being considered disability related:

• I fail neurological exams on my left side
• I struggle to walk down hills, particularly with uneven terrain
• If I was going into the Hunger Games, I would die (don't lie: you would probably too)
• My arm prefers to be in a bent position
• My fingers do not move fast enough on my left arm to play the piano (well there goes my chances of being the next Mozart!)
• I struggle with aphasia, some times more than others
• I have had friends have to feed me, give me meds, transfer me, and learn sign language for me
• I struggle going along the rows at the movie cinema and in auditoriums
• My left hand has a weak grip - I often drop my keys and other items (don't worry: the iPhone is still in one piece)
• You don't want me on your team for Survivor
• My gait has been documented in many different ways. I mostly refer to it as "just mildly stupid"
• My fine motor skills are lacking on my left side including my hand writing and skills like make up and nail polish. If anyone wants to look like their three-year-old did their make up for them, I have those mad-skills.
• I struggle with aspiration of thin liquids
• I can never leave the house without my AAC and my meds bag

For all intents and purposes, medical professionals would consider me as disabled or someone with a disability.

Then why don't I really think that? Because I don't, not on a daily basis. Yes, I can get pissed off when I can't walk on the sand or something like that. But I don't think "Woe is me, I am disabled." I more think "this is one of the most terrifying things I am trying to do. Left ankle now would be a great time for you to cooperate"

There is a quote by Scott Hamilton: "The only disability in life is a bad attitude"

The truth is... I can't stand that quote. I hate a lot of the pictures that go with it - "inspiration porn", as it is termed. I find that quote offensive. Try telling my friends that if they just changed their attitude their multiple and complex disabilities would disappear; they would suddenly not be mobile and verbal if they saw life a bit more positively. That quote strikes a nerve with me.

But I see what the quote means. I do see the tiny glimmer of truth.

Attitude undoubtedly helps a situation, I have never denied that. You cannot do anything in life if you do not have the will to do it and the belief that it is possible. Recently, I did change my attitude. I was in a position to decide I could improve. I had the support of close friends. Here are the ways in which I have improved:

• I can walk down stairs independently
• Not only can I walk down the stairs independently: I can assist Charmaine down the stairs with no trouble.
• I have mad typing skills. I am not even sure how I do it, but I am fairly sure I use the ring finger of my left hand a lot (whereas I used to use my pointer finger).
• I can sit on stools and chairs without backs
• I can cut my food easily using a knife and fork
• I would push you off the cliff in the Hunger Games first, so I would hopefully not be the FIRST to die
• I drive very confidently
• I have gross motor strength.
• My gait is now "mostly not stupid"
• I have an ability to communicate always, one way or another. My friends know the important signs, including all the swear words.
• Although I still prefer to sit cross-legged, I can sit comfortably in other positions
• I take Epilepsy medication and that has helped a lot
• I have CONFIDENCE to do so much more now
• When people don't treat me as though I am disabled, then I am not.

I might have a disability, in all official accounts. But the very term disability says not being able to do something. I can do everything I want to do - I always find a way. I mightn't be able to shuffle into the middle of the cinema row, but I can sit on the edge. The movie is just as good there. I use a friend's arm to help me walk on the beach - the beach is just as beautiful, potentially even more so when you are in the company of those who you love.

The disabilities don't disable me, really. Because I have my life. I do what I want and achieve a lot. I have always said I will, and I can. I recently made the active choice to not accept the motor neurological deterioration the doctors were seeing. A most beautiful friend said to me "Good. Because you still have a lot of life left to live".

She's right. I do.

I am always finding ways to improve. The other day, I carried one plate in each hand. These plates were heavy, I almost dropped them, but I didn't - well done left wrist. My friends are always fixing my left arm when they see it bend or twisted in a position it should not be in, when I don't notice it.

If my disabilities don't stop me from being able to do anything I dream of, are they really disabilities?

If I can work a way around them to live my life, am I actually disabled?

Or is that just what society says?

In other news, I am changing my AAC. More on that soon...

Charmaine Wants Tea, Please

The other night, I was over at Charmaine’s house. For those who don’t know who Charmaine is, I highly recommend you read this post before you continue. Don’t worry, I’ll wait for you until you get back...

Excellent, now that you’re all caught up we can continue.

The other night, I was over at Charmaine’s house. Her mum and her dad were there too, oh and for anyone who is wondering the chihuahua puppies have been born! 

That is one of the puppies in my hand. For a frame of reference, I can pick up the mama dog easily with one hand.

Sam, Charmaine’s oldest sister and Maria, one of the “acquired German daughters” (Charmaine’s live-in carer and OT for the year) had gone out for the night. It was quite pleasant a night. The four of us were relaxing with the television on. Dad was very tired after a long day at work, Mama was working on the computer, and my mind was elsewhere thinking about my German exam at university the next day while mindlessly stroking one of the dogs.

Then something very important happened.

I don’t even know how this happened. Charmaine and I weren't actively practicing any sign language or doing speech therapy. She wanted something, I could tell that much. She was asking her dad for a mobile phone and I knew that's what she meant, but given what she was signing, she could've been asking to phone someone.  So I turned to her and asked, using speech and sign: “Do you want one?”

She picked up on my signs and started to respond with signing for “I want”

But… suddenly we heard from her, clearly speaking: “I want”.

What was that?

Charmaine has a limited verbal vocabulary. She understands the world around her very well, and also knows what she would like to say very well but is afflicted with aphasia and apraxia of speech. Some of her words, with therapy and practice include: Charmaine, Mama, Papa, Sam, Maria, Lala (what she called her previous carer: to be fair, Claudia is a lot of phonemes), Tea, Fish, Shower, Thank You, Sorry, Oops! and a few others including my name. She also can say “How are you?” or if asked how she is she can respond with, “Fine, how are you?”. She also can say “I love you”. Her two most recent words are: why and awesome.

But suddenly, while signing, the speaking just tumbled out “I want”.

We were all silent and then Dad said: “Say it again, Charmaine”. There was almost a sense of disbelief. You could feel the anticipation hanging in the atmosphere.

“I want”

Well there was no disbelief then.
The cheers were immense; the celebration was huge.

“Charmaine say, “I want tea please” her Dad prompted

Without hesitation and clearly, Charmaine said it.
We filmed it. There was squealing. It feels like a piece of the puzzle has been put in and it has fit smoothly.
I messaged my own mother with the good news, my teacher from special school and my four closest friends. All of them appreciated this immense achievement and sent back messages ranging from "that's fantastic, Charmaine!" to "f***ing PHENOMENAL!!!!!"

Later that night, Charmaine actually wanted tea and she simply said as she always does “tea”, but after a quick reminder to say a sentence it happened again:

“I want tea, please”

It is a thrill to hear her speak.

And then she looked at me and said my name, and with a little bit of help said "want tea please", and I am never going to say no to tea!

That night, she could’ve had twenty cups of tea and nobody would’ve objected.

We talk about inchstones and we talk about milestones. This was a milestone.

Please, grab some tea and celebrate with Charmaine and me! Celebrate your own, your friend's or your children's milestones and inchstones with us! 

Charmaine and She Types Things: Charmaine, very proud of herself and Me, very, very proud of her.

"It's a miracle I look this good after everything I have been through..."

I have been trying to write this post for a while. I know it won't be the only post on this topic, but I still never knew what to write. Now, as I sit in my university common room - having left my books at home like a fool and considering that 9:30am is too early for lunch - I think I have the words figured out.

Like most people in this world, I love going to my best friends house. There are many great things at my best friends house. I have my "second family", "other mother", my favourite kind of tea, multiple best friends, all the animals I could ever want (including, any day now, chihuahua puppies) and there is always Pepsi Max. 

And whenever I go into the bathroom of this wonderful house, I see a sign that says: "It's a miracle I look this good after everything I have been through".

And do you know what? This is completely true. Dad, Mum, oldest daughter, extra German daughters and their youngest daughter, Charmaine, are all hot to trot.

....it's a miracle they all look this good after everything they have been through. 

Dear internet: I would like to introduce you to one of my best friends, Charmaine.

I honestly am not sure where to begin to describe Charmaine. The wise words of Julie Andrews say "let's start at the very beginning; a very good place to start". To be honest, I'm not even sure where that is. 

Charmaine is one of the most loving and empathetic people I know. She has a very special way of connecting with people and the world around her. I think it is a gift. She's hilarious, crazy and fun. She can be damn cheeky. In many ways she's just like me in the way that she is a young woman, we live in the same area , and we both have dreams and goals in our lives. Charmaine has a disability, too - in fact, I would say she has more than one.

Charmaine was in a traumatic car accident a little over two years ago. She was not supposed to her survive, at all. When she did survive, she was not supposed to walk, talk, understand language, recognize people or be able to swallow again. 

Charmaine has exceeded these expectations, a thousandfold. Through the love and support of her family, friends and medical team; damn hard work; and things that simply cannot be explained by medical science, which we attribute to the grace of God. Charmaine eats. Charmaine is learning to walk again, she can walk with assistance or with a walker. Charmaine understands the world around her and can respond effectively through speech or another method. Charmaine knows who others are in her life -- and she loves them. Charmaine is still always improving.

I love this entire family beyond what I can say. Though I am normally cynical and a harsh realist, I do soften for a moment and believe that special friendships like this are when one soul joins across two bodies. When I think of Charmaine, it has occurred to me that her right side does not work effectively; and my left side is deficient. Together, we work as one. Some people come into our lives for a reason and some friendships are simply meant to be. I am lucky to be accepted into such a damn good looking family. I am thankful that they take me as I am, disability and all. That is a level of acceptance that I'm still not used to, and I appreciate so much.

Recently, I wrote that "Disability is not normal" and as soon as I wrote it, I wasn't sure I really thought it was true. I have a disability. Charmaine has a disability. Yet, I feel like we are both normal.

We are both more than our disability, absolutely. I am definitely all for person-focused and person-first language and thinking. But our disability is an intrinsic part of us - Charmaine's is more than mine, and that's just the truth of it. We cannot go through a day in our life without our disability being a part of it.

 But, Charmaine is normal to me. When I am with her, I feel normal.

We are friends. That is what matters. What the rest of society thinks of our disability becomes irrelevant - in that house, in that family - we are normal. Disability is accepted so much that we are given permission to be normal. Even when we are out in public together, I don't notice people staring until I consciously look. Disability isn't normal - I stand by that. But people are. And sometimes disability can be so accepted that whether it is normal or not: it doesn't matter. When it is accepted, it is no longer an issue. It mightn't be normal, but it can be okay.

Charmaine makes me feel normal, and her sister Sam once said to me that I make Charmaine feel normal. We are friends, there are no labels.

And we are damn good looking, too.

Charmaine - I love you.

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.

Image Source

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.

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.

The Trouble With Labels

(This is a follow on from "Disability Is Not Normal, But...")

Labels is a word with many connotations. In middle school, clothes with labels as the MUST have - and if your mum shops at K-mart, you cut those tags off your jeans so nobody in the locker rooms knows about it! We label things all the times really - we label our coffee mug at work so people can keep their hands OFF it. We have many reasons for why we label different things...

The word labels is one that everyone in the world of disability is very familiar with, and the word stereotype is also one we know. But as human beings, we stereotype for a very good reason. Stereotyping is our brains way of being able to categorize the massive amounts of information that we experience in our world - information we may only experience for very brief periods of time. Our brain has no chance to get the life history on what it is that we have encountered, so we stereotype it based on our previous experiences. It's how we survive and actually, there is nothing wrong with that. Not everyone you see on the street is going to be your life long friend. It's okay for your brain not to explode by trying to process everything.

The trouble is when labels stick forever.

The trouble is when we do become friends with someone but we don't remove the original stereotype we had. It's limiting on what the relationship could be. This isn't just applicable to disability, mind you: it could be to do with someone's race, sexuality, cultural identity, religion, whether they are vegetarian and our thoughts on this, if they have split ends or not: in short, a characteristic or quality that we use to define them - and the inability to see past it.

Culture is changing. It might not feel like it, but in Western society the culture is starting to change slowly but surely to person-first language.

We are starting to refer to someone as "person with a disability" (or special needs, additional needs - whatever floats your boat. I prefer to call a spade a spade). Because they are a person. And they are with a disability. Professionals and people alike are starting to use people-first language. It is catching.

Recently, I wrote "Disability is Not Normal, But..", and I know some people took offence to it. I understand that and I am sorry, but I stand by my word. We live in a society now of political correctness - where people receive a prize for simply turning up - and these can be good things. I am all for building young people's self esteem.

But in our mad rush not to offend people and our desperate desire to make everyone happy, we also try to hurriedly remove the labels we have long put on people with disabilities.

A few years ago I worked a charity gift wrapping stall at Christmastime. In fact, I did it for a couple of years and I highly enjoyed it. I got quite an adrenaline rush as people started queuing for their presents to be wrapped. I was also high on Christmas carols and the general spirit. We all tried to wrap quickly, but neatly and we always tore the price label off quickly.

Often, we made a mess of it.

When you try quickly to take a label off, it often ends up looking different than the first thing. It also looks a lot worse. Now you have this absolute mess going on.
Feeling tongue-tied, trying to make the person with a disability feel better because you've accidentally said to a person in a wheelchair "Would you like to go for a walk with me?" and you are now feeling awkward (by the way: it's okay to say that), you quickly mutter something about supporting people who are differently-abled.

It's like getting the Sharpie out and quickly covering up the price - trying to hide the label all together.

Try as you might: that approach just does not work. We can pretend it does. We can smile, nod and pretend we don't all know what is going on underneath that. But that is not really removing a label - that is simply living a lie.

Removing a label takes time. It takes care. Sometimes, it might even take a bit of creativity. But it is not something that we can hurriedly try to do in a desperate attempt to make everyone feel okay while screaming things about equality. Of course, I believe in equality for people with disabilities. But for a label to be removed, it has to be genuine - else it might as well still be there. It's just like an organization promoting themselves as being inclusive for their image, without having a genuine heart behind it - it simply won't work.

But once the label is off: it is like it was never there in the first place. It simply is what it is, and we can accept it. It mightn't change the nature of the person (or in this case, the bowl) - but the principle of it is important to me because it gives me a chance to show you a different side of me. It gives me a chance to show you that I might be different from that other person with a disability you know, or different from that other person who is Australian that you know...
Removing labels gives us all a chance, in my opinion.


What do you think? How do you feel when you/your loved one is labelled?

4 (more) Special Moments from Special School

I have said it before, and I will say it again: I love Special School. Very few things get between me and Special School. I had a conversation with a good friend, Luke, the other day.

She Types Things: "Luke, you know I love school."

Luke: "Really, I couldn't tell..."

She Types Things: "Like if you were in hospital with only six hours left to live and it was on a school day... I am not sure what I would do... I would be very torn."

Luke: "You would go to school. I have accepted this. It is okay"

She Types Things: "Well you said it, not me"

Of course, I am not completely heartless. I would probably divide my time between school and Luke if that horrible situation did happen ;)

But I do love school, and when I am not at school I am constantly wishing I was at school. I am often thinking about my students. I care for them all, a lot. I want them all to succeed. I want them all to go beyond our expectations and exceed their wildest dreams. I think about this a lot.

I also want them to have a chance to be kids, or teenagers as the case may be. The other day my "sweet student" and "princess" were listening to music. They took it in turns to, using a switch, choose the music. They were just two girls, listening to music together as friends.

Please feel free to share in my joy of four more special moments from Special School.

#1 I have a new student in my classroom and she has been getting to know me over the past few weeks. This week when I entered the room she ran up to me as fast as she could to give me a hug. She is a beautiful child and this warmed my heart. Seeing recognition from students does make me happy: it is validation that I am doing my job.

#2 Communication is always on my mind with all of my students. I personally believe that communication is the key for thriving. One of my students, who I have now known for a year and who I refer to as "my sweet student", does not YET have an AAC or reliable system of communication that works for her. This is a lengthy issue in itself and I won't get into it now. I am able to understand her basic "yes" and "no" responses, but when she communicates something more it gives me great joy. It gives me even greater joy when it is something with typical teenage attitude and spunk. The other day, when a student was annoying her - she rolled her eyes at them and I burst out laughing, so she rolled her eyes again and smiled at me. THIS is fantastic. This is communication. This is gold.

#3 I love seeing a student improve. This can be over a long period of time, or it can be a sudden change that comes from a change of attitude, or a change of teaching method (or a combination of both). Seeing "my main mate" rock out a skill with a new attitude after doing such a poor job the week previous was such a thrill.

#4 I learn more as a volunteer at school than I ever did as a student. I have always said I wish I cared about school this much as a student. This week, as I was watching my teacher work students I was struck once again by the fact that she is an outstanding and marvellous teacher. I want to learn everything I possibly can from her.

Disability is Not Normal, But...

We live in a world of political correctness. Not long ago when I went for a job interview, I found my words more muddled than usual as I was confronted with the question to the effect of "what are some strategies you would use to handle a child with additional needs?"

Additional needs? I was applying for a job in disability services, based at a special school. The question itself didn't stump me but suddenly we have thrown in the phrase "additional needs"? Whatever happened to plain old "special needs"?

I stumbled through the question. I got the job. 

I enjoyed the job thoroughly. It was a summer job, working with a lot of the kids I know from throughout the year but with more of a focus on fun. I really enjoyed it. I met a bunch of great colleagues as well. I learned a lot and I had one really interesting conversation that stands out in my mind. 

One day, towards the end of Summer, I was talking with a colleague, Hailey. Hailey and I were talking about a little boy at the program. 

This little boy is nonverbal, has autism and could be a real sweetheart. He also could be really unpredictable and had bitten and scratched children, resulting in angry parents. 

Hailey said to me, in frustration, "I think he is such a sweet boy, I mean, if he was just normal - "

Hailey instantly looked horrified at herself "I didn't mean that, of course he is normal, I just mean - "

I just smiled at her and I shook my head "No, Hailey. I understand what you mean."

And the truth is: disability is not normal. 

Use the catch phrase you want: call it not typical, not average, developmentally off target or unique but these are just fancy or politically correct ways of saying not normal. 

Disability is not normal but it is okay. 

If disability was normal: disabled parking spots would not exist.

If disability was normal: IEPs and Special Schools would not exist. 

If disability was normal: we would all have one. (Or maybe we all do, but that is getting way too philosophical. I'm talking mainstream). 

If disability was normal this whole realm of special needs blogging would not exist. 

Disability is not normal. It is not typical. It is not mainstream. But it is okay. 

It's okay to have a disability: it is okay to be disabled. It is okay to not be normal. 

I don't want to be normal anyway. What is normal?

They laugh at me because I am different: I laugh at them because they are all the same. 

What do you think?