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.

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...

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 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?

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?