Back when I did my undergrad in the early 2000s, I remember doing the one and only mandatory unit on inclusive education. It had a little bit on Rhett syndrome, it had a little bit on ASD, it had a lot on PC (political correctness). In my early 20s I was frustrated by the emphasis on the language. What did you really matter if it was a child with? Wasn't what was important the actual teaching? Wasn't it more important that we manage to teach the child? I fully agreed that each child should be taught as an individual I just didn't see the importance of the words. Only a few years later, still in my early 20s, I fell pregnant with my eldest daughter. 16 hours after she was born we were told that phrase 'a child with' and it changed our world.
People always have nicknames for the disability, diagnoses or label. It is
as though somehow making it a cutesy name takes the sting of it away.
That's not the case. Well it's not the case for some of us. While my
husband and I now consider ourselves very PC we know
of other parents who don't mind using cutesy names, they don't mind
cutifying their child's diagnosis. And that's okay. What's not okay is
when our language reflects an attitude that puts the disability,
diagnosis, illness, before the child.
We don't say 'that's
the hayfever student'. We don't say 'that broken arm kid'. We don't say '
over there is the asthma girl'. We don't say here we have our 'anaphylaxis
student' or the 'fallen arches boy'. So why do we say the Down syndrome child? Why do we say
the Aspergers child.? During my undergrad I didn't
understand what the difference was. Then I became a parent, and I
understood, with perfect clarity. I feel the sting every time somebody
sees my daughter and makes a generalisation. Makes a stereotype. Makes
assumptions. Lowers their expectations. All because
of a word - a label. Just like everybody else, she's an individual, a unique personality. It's important to us for people see her first
and then see that she has other things going on. Who doesn't want the
rest of the community to see their child for
they really are?
Only a few weeks ago I got to start my dream job, again. I was in a
similar role when we were living in Brisbane last year and when we moved
back to Warwick I didn't think that I would be able to find a school that
required me. But I was blessed enough to have
an offer for my dream job. You see, I work in Special Education. I wouldn't call
myself a special education teacher, because I seldom get into the
classroom. It's my role to manage the bureaucracy and red tape. I am an advocate for parents, teachers and the students. I do the
research for new strategies and technologies that
will help teachers. I organise and I conducted professional development
to help teachers improve their skills to help students within the
classroom. In many ways I now consider myself a specialist teacher.
One of the things I love about working in schools is the name badges.
And when the receptionist at my new school gave me my name badge I may
have let out a little squeal of delight. On the badge was not only my
name but my title of Special Needs Coordinator.
Now I've been a Special Education Coordinator before and I've
been a Special Needs Teacher, but never a Special Needs Cordinator.
This got me thinking about the language again. I'm not a fan of 'Special'. To me it implies that the education my two other girls will not be 'special' because they don't have a diagnosis or label. I simply don't believe this to be true. My husband and I were talking about it and the title 'Disability Support Coordinator' didn't really sit that well either. Even though our eldest daughter has a diagnosed 'disability', we don't see her as UNABLE to do anything. I know the word 'disability' upsets other people and they embrace 'special needs/education'.
Then I wondered why the language can be so upsetting, whether it's 'a child with', 'special education' or 'disability'. I think the long and short of it is that it isn't the words that are upsetting, but the preconceived notions, the generalisations, the stereotypes, the attitudes that come with each. The language itself doesn't bear these traits, it is the people who do. These traits are born from ignorance, not of the malicious variety, but simply through having not experienced the pain, loss or hurt that comes with a diagnosis.
As thus I am recommitting to my calling in life, to advocate for my daughter, for others like her, for their parents and for those who care. I am committing to being a voice, a loud one, to try and wash away the ignorance that comes from lack of experience. We all need to tell our story, and we all need to be mindful of the power of words. They can build a person up, or they can tear them down. I hope that if you are reading this, you will join me in spreading the word, because, 'unless someone like you cares a whole awful lot, nothing is going to get better. It's not.'
Please join me on my facebook pages and tell me what language works for you and your family: