SUFFERING?? Nah. Journal #8

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This week I entered my first week of Law and Communications – I am loving it so far and managing to do it entirely independently.

 

From getting up and dressed in the morning, to getting back home – I’m able to do it, but it’s something I have to work at and every day I do have to put myself out there and ask for help.

My first week at Uni, It has not been smooth, I think I’ve crashed into about 2 dozen lift doors this week, had to answer more than a few weird questions – and deal with many odd looks, most of which come from bus drivers or perfect strangers outside of the University.

So when I say, I can do it myself, I don’t mean that it’s easy, but it doesn’t need to be.

I have a set of goals, I have changes I want to make and dreams I want to pursue – and I will achieve all I am setting out too, even if it’s not always smooth. 

 

 

 

I focus on the end goal, when things do get to be too much and one of the best lessons I have learned, ever since I was young is that achievements multiply.

For example, when I learned how to adapt in order to dress and shower myself, I knew that achievement would multiply and would allow me to one day (soon hopefully) move out, live alone.

Although I have not yet learned to cook over elements, so if I did live alone – I might live on a Noodle diet, give me a year I’ll sort cooking out.

My point is that, in my life each small achievement has allowed me to believe in my capacity for more and this has meant that the future hasn’t scared me as much as it could do.

 

 

Instead of me saying to myself “HOW THE HECK AM I GOING TO DO THAT?” I have been able to say

 

“OKAY I KNOW I CAN DO X, SO I WILL BE ABLE TO DO Y. I JUST NEED TO WORK OUT HOW, BY APPLYING SIMILAR PRINCIPALS I HAD TO WHEN I DID X”

 

That being said sometimes, certain things do really get you down and you wonder if all the effort you’re putting in is worth your time.

 

I want to talk about one of them:

 

Last week shared on my Facebook Feed I saw an article, about people – mostly parents of children with CP (my condition.) The article was about, the parents (I say the parents, because for the most part the children are young so their medical choices fall under the responsibility) of these children with CP wanting them to have a surgery overseas, the surgery costs thousands of dollars – the surgery essentially markets itself as something which fixes CP.

 

The article reinforced the age-old idea that disability, CP was something which people suffer from, something which needed fixing, in order for its “sufferers” to live full lives.

 

The choices of parents, medically, about their children is there own and everyone has the right to do what they see fit to help their child, so for the most part I am going to put my personal thoughts on the actual surgery aside.

 

But the point I want to make is this, I know those people weren’t talking about me personally, but it felt like they were – because when you say things like “people with CP are suffering” which is what the caption to this video said, although the wording may be structured differently.

 

That groups me in with them.

 

And that means, that every person who I encounter, who is only educated about disability through very little media discussion, will look at me and think that I suffer – or think that I need to be fixed.

What that means for me, is I have to spend more of my day explaining to people, that I am content, full, happy. The work that I do, is to try to shift the conversation, make people proud of who they are – but it seems we’re still in this cycle of believing that being normal, is what we should aim for.

 

“Normal” however is nothing, it’s a social construction, built out of no fact. Our obedience to it does nothing to better who we are, or the world.

Every time I learn to do something new, like make eggs (in a microwave haha) I am assured that one day I will be at  Oxford doing my graduate study. I got the idea to do this in 2017, when a lady at a conference suggested that I go to Oxford one day, when she suggested this I was still figuring out how I would take transport into University – each step, is a step toward my future – which I want and I want other people to know that their futures are also in their hands, which is why I honestly document things.

 

We don’t suffer, we work hard like you do – sometimes harder, because we want a life that we love, and a full life – I object whole heartedly to the use of words like suffering, when we talk about disability – and I hate, that the stereotype of needing to be fixed, or disabled people having something “missing” is still a large part of our mainstream discussion.

Perhaps parents don’t want their child to be like me, perhaps they’d rather them walk, perhaps the child themselves would rather walk.

 

I don’t take it personally if you hate the idea of someone who you love, or you yourself, using a wheelchair, but you should know, that no part of me, wants to walk.

I am here, I am valid and I am making moves. We all are, because at the end of the day, my disability has never limited me, I have learned adaption.

Perhaps adaption is a word we should focus on, instead of suffering.

 

 

PEOPLE WORTH LOOKING AT IF YOU WANT TO SEE ADAPTION IN ACTION:

 

MOLLY BURKE

RHEED McCRACKEN

JORDAN BONE

 

 

 

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1 Comment

  1. Fiona
    May 9, 2018 / 12:18 pm

    I love this piece Grace – you’re such a great writer and so empowering. Another inspirational Grammer to add to your list is @mamacaxx 🙂

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