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?

My Friend's Disability Pisses Me Off

One of my greatest friends is named Rebecca. She and I get along for many reasons; for example, we just spent Valentine's Day watching Despicable Me together - and neither of us could really imagine anything better. Rebecca is a wonderfully supportive human being, and we tend to agree a lot on a lot of things - but there is one thing we will never agree on.

Rebecca uses a GPS to navigate everywhere. I never, ever use them. I am an old fashioned lady.

(Yep. Pretty close approximation to what I see in the mirror).

I would much rather look up on a map (Google maps, I'm not THAT old fashioned), and know where I am going whereas Rebecca can blindly trust the talking machine. I can rely on my sense of direction fairly accurately whereas Rebecca would end up in outer Mongolia if she attempted to try to rely on hers. We will never agree on the use of the GPS.

And that is okay.

A wise blogger by the name of Mary Evelyn over at What Do You Do, Dear? recently wrote about her son getting his new wheelchair and in the post she said that "[he] only needed the right tools. Just like you and me". Of course, Mary Evelyn with her wise words has caused me to think. Well done, M.E.

We do all need different tools. For Rebecca, it is the GPS. For me, I'd rather a proper map. 

I have other friends as well as Rebecca. One of my other friends is named Heidi. Heidi and me have been friends since high school. Throughout life, I was a dancer and Heidi was a musician. Then fate dealt a cruel hand.

Within twenty-four hours of each other, I lost function of the left side of my body and never properly regained it. Heidi lost hearing in her left ear. She has never regained it.

I am angry at my friend's disability. 

I think it is unfair. I also think it could've possibly been reversed with hyperbaric treatment. My mum is a hyperbaric specialist and has successfully reverse multiple cases of sudden onset hearing loss. I think it would've been at least worth a try. My mum was very keen to try. But by the time Heidi was properly diagnosed, it was too late. I am angry and frustrated that my mum and I didn't fight harder; we didn't talk to her parents; we didn't really believe what was happening... 

She wears a hearing aid now. She only got it recently.

We only need the right tools.

I still make sure I go outside and dance in the rain. Heidi can still play music, she adapted. We learn to adapt: it's the name of the game.

What tools especially help you get through life? (Red wine is an acceptable answer...)

My Family Fails at Inclusion

As I write this, I am sitting on the couch at my grandparent's apartment. Well, maybe I should start calling it my grandmama's apartment. It is grandfather's 89th birthday, and next Tuesday he is moving to a nursing home.

It's not exactly a sad occasion. In fact, things have almost worked out as well as expected. Grandfather had a stroke two years ago, and if it hadn't been for one geriatrician who, though extremely doubtful, gave him a chance at rehab, he would have been in a nursing home since then. 

It took him months, but he came home. He has been home ever since. My grandmama has been his primary caregiver, with a lot of assistance from my mother and my aunt. 

Now things are changing. Sadly, my aunt - a wonderful woman, a doctor, and a lifelong non-smoker - has been diagnosed with lung cancer and the surgery has been difficult. My mother has been torn in different directions: trying to assist with her ill sister, as well as her father. Grandfather is declining. I can see it. 

He is not going to the nursing home because he is 89. He is going to the nursing home because he has chosen to. The nursing home is in the same complex as Grandmama's apartment, so she can walk there. She can visit any time. He can come home any time. But it is less work for her. Honestly? I think this will be happier for everyone. I hope that doesn't make me a horrible person. I think Grandfather will be happier. I think Grandmama will be happier. I hope so, at least. They can spend quality time together, instead of focusing so much on care.

And the truth is, I think my family fails at inclusion.  Maybe we are in denial, but as Grandfather sits in his chair, everyone else gets up it seems. Grandmama, Aunt and Mum go to the kitchen and they are generally just talking. The men go somewhere else as well. I am the only one who sits with Grandfather. I don't often have much to say. My life is not overly interesting. We both have aphasia as well, and seem to take it in turns as to has it worse. I try to talk about medicine Grandfather after all is a doctor (I will never say he was. He still deserves the title).

My family are great at caring for Grandfather. But when it comes down to the social side of inclusion, the fact is they downright fail: and I don't really know why. Maybe they don't understand how it feels. Maybe they want to talk about him, but the weird thing is that although Grandfather is now in a high care facility... I think we might do a better job on the inclusion than ever before...

What do you think?

I have a crush (I am disabled, not dead)

Today was an absolutely awesome day, it honestly was. Today, I got my geek on and went to a Red Dwarf Convention. I know, I know. I was amongst all the other people rattling off their sci-fi knowledge and I felt like a bit of an imposter...

The truth is... the only sci-fi show I even watch is Red Dwarf.

It was an expensive day, and getting photographs was expensive too. I had to choose wisely who I wanted to have my photograph taken with as it was 40 dollars a pop and I had already spent a lot to get into the convention. I am not sure I can admit how much I spent to get into the convention: I justify it with the fact that my brother has just gotten back from six months overseas and it was a good way for us to spend some time together...

I chose to have my photo taken with Hattie Hayridge. Although it is a tough call, I think she is ultimately my favourite from Red Dwarf and I was very excited to meet her. I asked her "May I please hug you?" when I first met her, then we had a chat. She admired my glasses, I in return told her how much I admired her comedic style. I was very glad that my aphasia was not so bad today.

Meeting an idol: my favourite comedian, Hattie Hayridge.

 

This really overshadowed everything else that happened today. The fact that I walked down the stairs independently, without a stair rail or another person - something I have not been able to do for a long time - seemed pointless. Don't get me wrong; I was thrilled, it's a massive achievement. But Hattie Hayridge comes once in a lifetime. I'm going to try the stairs again tomorrow. I was texting a friend about it all and the conversation went like this:

Friend: "I am in agony from the high heels last night"

Me: "I know, my feet hurt too. I can't even feel my left toes. But it doesn't even matter. I walked down the stairs independently and - wait for it - I JUST MET HATTIE HAYRIDGE"

Friend: "What? You don't have feeling in your left foot?"

Me: "Yeah. From the shoes. It's not important. I met Hattie Hayridge"

Friend: "You can't walk down the stairs? Go back to that part"

Me: "No I said I can. Without person or rail. But it doesn't matter, I just met Hattie Hayridge"

And then she got the idea and proceeded to ask me appropriate questions about Hattie Hayridge.
It's not that I don't appreciate that I have concerned friends, but guys, I'm normal too. Hattie Hayridge comes once in a lifetime. My left foot hurts because I wore pretty shoes last night, and my left foot is a size bigger than my right. It's not a medical issue. Guys - I met Hattie Hayridge today.

The first conclusion for why something is wrong is not always disability related. Recently, when feeling sad, it has not been all because of coming to terms with things related to disability. It has been because of something far more typical 20 year old related.

I like someone. I have a crush on someone. Fairly sure they don't/can't/won't/shouldn't/couldn't/allthenegative like me back. #unrequitedlove

I don't want to say too much on it - mostly because I'm worried they read this blog. But I'm not so disabled that I don't get crushes on people. I'm not so disabled that I don't get upset when people I like don't like me back.

I'm human.

And this Valentines day I will be enjoying being human - by eating chocolate, all by myself, and not feeling guilty about it. Some of us have companion, some of us have chocolate. Between you and me, I have no problem with my end of the deal.

Fail, Fail, Win: Beginning to Accept Disability (complete with stickers!)

Some days, I am not good at being a grown up. This is shocking, I realize. Today seems to be one of those days.

As the Australian school year starts back, many of my jobs  swing back into full steam and this was the case today. I think the fail began when I forgot to wear my butterfly hair clips. I definitely failed worse when I had already started driving to work and realized I had forgotten the classroom keys. Then - there was the ultimate moment of failure. 

Dear internet, nobody can be an effective educator unless they employ the use of stickers. 

I had, of course, left my stickers at home. 

Fail. 

I considered for a brief moment explaining to the five year olds that they couldn't get stickers this week, but I would have them next week. The image was not peaceful. I might as well have said I killed the Easter bunny. So, I did the grown-up thing, and stopped at the overpriced news stand and bought some sheets of stickers. 

These suckers cost me almost 15 dollars. 

You've done something like this before. Don't lie to me. Particularly if you are a parent, you have done something like this before and sort of kicked yourself for not being more organized. Maybe you have run out of nappies/diapers and had to pay a million dollars and your left arm for ones at the all-night pharmacy. Maybe you have had to buy formula, like Pediasure, because you have left yours at home and you can just see it; in your mind's eye -  sitting in bulk - at home, and there is nothing you can do about it. Or maybe, just maybe, you've even forked out the money to go to the cinema and you are paying for snacks at the snack bar - just to see your kids happy. (Or to shut them up and stop them whining). (Or because you actually really wanted the popcorn). 

We do things like this for lots of reasons. Occasionally we fail at life and being a grown up. Sometimes we fail for good reasons. Today? I think I was distracted. Recently, I wrote "Dear Internet - I am an Idiot", and (excuse my German) but things have really been scheisse lately. That's the truth of it - there's no way to make it rainbow and bubbly.  There's no need to sugar coat it because what is the point in being dishonest? It has sucked. But, I have learned something I knew all along.

People do want to help you with your load. Think about this: when you see someone struggling with a heavy bag, or carrying lots of groceries, or struggling to push the pram while carrying the nappy bag, the other toddler and all the other paraphanelia - do you want to sit there and just watch? Or do you want to help? Even if you are unable to help, do you not want to do something to help?
 

(Please tell me the answer is you want to help...else we may need to have some more chats... I do have a background in psychology after all...)
 

Once people agree to share the load, very rarely do they pass you over the whole load. More often, we just give over something small - the lightest bag. It's like the grocery bag with the bread and the tissues in it. 

And it's a start. Maybe it just makes your load more manageable - even if your load is heavy, it might be less awkward; more balanced. Soon, they may insist on taking another bag. Or someone might even push the child's pram. Sometimes, when you are tired, people are sneaky - they take some of the load... and you don't even realize they have done it. It's okay for some others to even take the whole load for a little while - between even just a few people the load is so much more lighter and more manageable. Rome wasn't built in a day and it was not built by one single person.
 

So, now, I am feeling better. Genuinely and truthfully, I am feeling better than when I wrote the other week. Because do you know what I have realized? There is a lot that is going on right now that really sucks.

I have also realized something else.

I have a disabling illness.

And -

It's not my fault.

And -

I am also very able.

And -

I am really, really loved.

And for that: I am winning.

Sometimes you need to re-learn things you have known all along.

So I will reward myself. Not all stickers are for 5 year olds.

 

These ones? These are all mine, baby. If loving Scooby-Doo stickers counts as failing as a grown up, then I'm not sure why you would want to be winning.

 

Tell me: go on, tell me, you know you want to. When have you had a "grown up" fail?

 

Never forget to share the load.