Tag Archives: respect

Disability is not a Time Capsule

I interrupt this ignorant transmission to deliver an important public service announcement: I realise I have a disability but I’m not Peter Pan, I have grown up!

  

Ok, I am the height of an average ten-year-old so possibly that has thrown you but let me make this very clear.

 

My life as a disabled child was very confusing.  Most of my extended family refuse to acknowledge the fact that I had a disability, (apparently this was just too embarrassing). 

 

I remember one day sitting on the floor watching TV when suddenly my uncle appeared in front of me angry that I had ignored him. Apparently, he had been trying to get my attention, but as he was standing on my left (aka deaf) side and I was facing the TV, I didn’t notice him.  When I told him this, adding that this was part of my disability I was subjected to a lengthy telling off.   Actually, I was not disabled, just very rude.

 

Sadly, this is just the tip of the iceberg. I was never allowed to admit that I had a disability. But, I was never allowed to do what the other kids did because, “don’t you realise you can’t?”  Not surprisingly I developed an identity crisis and severe depression.

 

As I got older, this did not improve. In my late teens and early 20s (even though I was almost completely self-sufficient) I was still being treated like a toddler.

 

On one family occasion, I remember we were all eating roasted chestnuts. A different uncle was feeding said chestnuts to his toddler grandsons by inserting them directly into each child’s mouth one after the other.  Then next thing I know the same slobber-laden fingers were in my mouth too.  EWWWWW! 

 

I pulled away and told him I didn’t want any. But he could not understand why what he had done was inappropriate (I was 24). I struggled with this issue for many years. In the end, I realised that you can’t argue with stupid, and in order to preserve any remnants of my self-confidence I cut all ties with this side of the family.

 

A lot of people (myself included) suffered because of this decision and I felt a lot of guilt. But I have no regrets. I did what was the best for me for once. I know this was my family, and in their eyes, they were helping.  But this is not a good enough reason as it made me feel belittled and inadequate.

 

The problem wasn’t so much what they were doing but rather their disregard and lack of respect for me as a person. My dignity was never taken into account.

 

No one has the right to make you feel bad no matter what relationship they are to you. Your self-esteem and sense of self-worth are precious.  Guard them with your life. 

 

It is a big thing to cut ties with someone though, especially if they are family.  So, if possible, try and explain to them why what they are doing is causing you so much anguish. Sometimes, it will help and the problem will resolve itself. 

 

But if it doesn’t, know that you are not alone. I understand.

 

XOXO 

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Are You Advocating to Me?

I once wrote an article for a nationally syndicated publication. It addressed how intrusive and presumptuous the general public can be when inquiring about the intimate details of elements of the life of someone with a disability. It was the first article that I had ever had published and I was chuffed to receive a number of messages from people  relating to the examples I had posed.  It was thrilling to note that so many people got me.

 Then I received a message from a reader to tell me that the first line of my bio, which read: “Nina Butler is a disabled writer from Perth, Western Australia” was incorrect. Now, I didn’t know this person and as far as I knew, they didn’t know me either, so I was baffled as to how they would know where I was from. As it turned out though that wasn’t where I had gone wrong.

 

My mistake it seemed, lay within the statement that I was a disabled person. Am I not disabled? I wish someone had brought this to my attention earlier. It would’ve saved me a lot of money on mobility aides. Apparently, I should have described myself as “a person with a disability” and not a disabled person.  This is “person first” language and by not using it, my bio (which I wrote) was very offensive. To who? Me? Quite apart from the irony of presuming to tell me how I should describe myself given the topic of the article they were responding to, the message really infuriated me because it came from someone who did not have a disability themselves (which they went to great lengths to point out).  That’s not to say that they are not entitled to an opinion but if the statement does not relate to you why should you be offended? It really irks  me when people advocate for a group they do not represent. 

 

I don’t really buy into the whole political correctness thing. You’ll never hear me wish someone a “happy holiday” unless of course they are actually going on holiday. In which case, (because I’m so cultured) I would actually wish them a “Von voyage”.  It is my belief that everyone has the right to identify in what ever way makes them the most comfortable. I have heard of disabled people referring to themselves; as specials, Crips, Mutants, or most ingeniously of all, by actual given name. And good on them. Whatever makes them happy.

 

My point is, in telling me that I am a person first or by being offended at the way I, as someone with a disability, identify myself , it actually tells me that you do not see me as a person at all.  But rather, something in need of a label so that it can be pigeon-holed and you can feel more at peace with yourself. Sorry, that’s not my job!

 

I’d rather you take heed of how you speak to me, not of me. A person with a disability is not hard of hearing unless they are actually hard of hearing. So there’s no need to shout or slow your rate of speech unless you are asked to.

 

Also, a disabled person is not necessarily intellectually impaired  so there is no need to speak to me in the shrill voice you would use when speaking to your dog, cat or pet iguana. Even if I was intellectually impaired, still talk to me just as you would speak to anyone else. It’s called respect people!

 

Speaking of speaking to me.  If I approach the counter, sit in front of you when you call for the next in line or into your establishment with a clear purpose, don’t look through me in an effort to find someone else to address. Even when I am with someone else.  I am always looking for an excuse to re-enact that famous scene from “Pretty Woman”. Don’t give me the chance.

 

Most of all,  if you see me out please don’t come and congratulate me. Or feel the need to give me encouragement. If I was as uncomfortable with my disability as you seem to be I wouldn’t be out in the first place.  .

 

This year, I have learnt that is better to be happy than it is to be liked by everyone.  I have learnt the difference between those who genuinely want to spend time with me and those who do it as a public service. I have learnt that I don’t need to allow myself to be the butt of jokes just so that I can fit in.  And I have learnt that I am allowed to pull someone up if I am not being treated justly.   I realise that in standing up for myself I may come across as  rude.  But I also realise that my feelings matter too. 

 

 

XOXO