Abloid Guilt

I don’t quite get it… 

I don’t think I have ever looked at someone else’s child and truly wished they were mine.  

So why do people feel guilty because they have neurotypical children and we don’t?  
Why would they think that I wanted their kids for myself or wanted their life for my own? 

I remember friends talking to me about this not long after our baby girl died.  They were worried about inviting us round to dinner for our regular Friday night get together in case their kids made us feel bad.  I explained they wouldn’t, we love their kids, but they are not our kids, they don’t make us long for our daughter, our daughter’s absence makes us long for her – nothing else.  

They got it, they are smart people and told us after talking about this issue they realised how ‘arrogant’ their notion was… as I said, they are smart people.  

I know we have exacerbated the situation for our ‘non-coping’ family and friends with the outcome of our subsequent child ending up with a severe brain injury… but I just can’t get my head around this ‘guilt issue’? 

It’s a ‘Catch 22’ situation.  You are guilty at the concept or connotations you have of how the parents of the child with the disability are living so you stay away.  

You don’t get to know the child, you don’t get to see or experience the joy they bring, you don’t get to lend a hand if the parents need it, you deny the parents (your friends) your friendship, you deny them their former life and then, because you are no longer involved in their life, you think their life must be really bad – it’s not.

I don’t feel I should make those struggling with their ‘guilt’ feel OK about their shortcomings.  They disappoint me and it is not because I covet what they have – mostly I am sad for what they don’t and who they’re not.  

They are missing out on a whole world of good stuff and so are their children.   

I think ‘Abloid Guilt’ keeps you stupid – they need to get over themselves, over their ‘arrogance’. 

The sooner we can get rid of the current charity based mindset in Australia for those with a disability the better.  

That way those “poor kiddies with the brain ‘owies’ and their charity claiming parents” can simply be “a family”.

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5 Comments

Filed under Access Warrior

5 responses to “Abloid Guilt

  1. Buena Judson

    OH crud! i just typed a nice comment and as soon as i submitted it it come up blank! Please tell me it worked properly? I do not want to sumit it again if i do not have to! Either the blog bugged out or i am just stuipd :), the latter doesnt surprise me lol

  2. Gina

    Beuna
    Sorry to say it didn’t make it – I do hate it when that happens. I have started to copy my posts before lodging them these days.
    Cheers
    AW

  3. I’m very glad to hear that you don’t wish you had another child instead of your own. However, I have read many autobiographical accounts by parents who *do* in fact feel that way, so it’s not unrealistic for them to worry about that. Sad to say, you’re probably more unusual for not wishing to have a different child, at least some of the time. Just one random example – Robert Rummel-Hudson said in the book Schuyler’s Monstwer that in the early years, when he first realized his daughter had severe speech problems, he felt extremely jealous when he saw other children her age speaking. It’s not that he didn’t love his daughter, but that he found disability had a terrifying and ominous meaning to him. (The later parts of the book are much happier, by the way.)

    • Gina @ http://inkyed.wordpress.com

      Ettina. Thanks for your insights. I did a response last week but it never appeared. This probably has a slightly different focus as I am just off the back of speaking/discussing and being interviewed about grief & loss around disability for some students studying it.

 I am slowly learning that I am more the exception than the rule as I progress along this journey. I do wonder if it is the fact our daughter died and therefore we understand that grief and comparatively Mac surviving with a significant disability doesn’t even relate or compare in the grief stakes. I also think we truly understand that Mac’s outcome was not that he would survive unscathed… his possible outcomes were were surviving with significant collateral damage or not surviving at all. I don’t think there’s many people who can actually comprehend those options – I don’t think we could have without our experiences in losing our baby girl, Meg.
      I also do wonder if there’s a sense of confusion or perhaps arrogance (maybe not the right word) around it all. For example, how do we parents on one hand declare disability is natural and want the rest of society to accept and embrace their kids… but at the same time then grieve that disability. Is it only natural if it happens to someone else? Am I so arrogant that I don’t think it’s ok to happen to me or my kids? Are there some folk out there that have been programmed to think things like this ‘happen for a reason’ courtesy of religions etc and therefore it’s a punishment? Or who get a pay off buying into the ‘guilt thing’ – rarely anyone has so much control that they can change an outcome so the guilt thing might just be a little bit indulgent IMO.
      I am not sure the grieving a disability isn’t a social construct… we are told we are “meant” to feel that way, and we have been “hammered socially and financially” to make sure we “stay that way”.
      I do sometimes think parents of kids with milder disabilities might actually have a harder time not wanting to ‘wish away’ the disability – they are often sooo close and dealing with invisible disabilities. Don’t get me wrong, if I could make Mac’s life easier I would… but I don’t think he needs to be “fixed” or “swapped” LOL.
      After all… he says he loves his life – who am I to grieve it or wish it was different.
      Mac shouldn’t have got his brain injury… it could have been avoided with better medical support… but as we know courtesy of my fave latin phrase Stercus accidit! (aka shit happens) 😉 so why not to us. I am mindful that everyone’s worst experience is their own worst… so while I would love parents to feel as ‘lucky as we do’ I also don’t wish the path of losing a child to feel this lucky on anyone either. Ten years on since Meg died it still hurts (not as often or as hard) but it still hurts.

      • Grieving disability is a social construct Gina. And Ableism is the thing that we should be feeling guilty about in the same way as sexism or racism. No one need give me a little smile as they pass me in the street or feel guilty because they think that my life is terrible or worse than theirs.

        I am fine with my disability no one need feel guilty that I am disabled and they are not. People should feel guilty if they treat me differently or avoid me or feel sorry for me or shut me out their lives and their community by lack of access and their crappy attitudes.

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