Positives not negatives « Terrible Palsy

Positives not negatives

October 24, 2006 at 8:20 am | In The things people say | 5 Comments

Wheelchair Princess has kindly answered 10 questions on her blog that you may have always wanted to know but never dared ask. It’s well worth a read as I myself have wondered about some things (particularly about questions 5 and 6).

I have noticed over the past couple of years that there is a certain snobbiness/competitiveness that enters the world of being a parent of a child with a disability. In fairness, it isn’t just limited to the disability world, there has always been the competitive world of being a parent anyway. The snobbiness relates to how disabled your child is. I’ve had more than one mum of a child with a severe disability tell me that my opinion doesn’t count as I couldn’t possibly understand what they go through each day.

The truth is, those parents are right – I don’t understand what it is to be a parent of a child with a severe disability. Moo wasn’t the youngest, the smallest, nor the sickest prem in the nursery. Save for a couple of incidents, he had a pretty good run through ICN and Special Care. His CMV diagnosis really hasn’t meant much to us long term save for the initial shock of diagnosis (and the continuous hand washing after handling him). His ROP resolved, as did his deafness and reflux. His constipation is manageable. I didn’t run off and buy a communication device when I was told to by his speechie, which is a good thing too because I don’t think he needs one. His swallowing is such that I can now give him small pieces of steak without fear that he will choke. He is seizure free (touch wood) and has great head control. His right arm is better than his left but still has good function. Although his legs are particularly tight, it’s mainly his adductors, hamstrings and quadriceps that are the problem. His calves are fine and his feet – perfect.

It’s not a competition as to whose child has the worse disability and even if it was, I’m quite happy for others to win. If my child misses out on funding for his equipment because another child has been deemed to have more need, then I am quite accepting of this decision. I don’t have the need to over-emphasise our situation to get funding. I don’t want to go to the media to publish how bad our lives are to get donations – simply because it’s not bad. I don’t want anybody’s pity and I also don’t want to focus on the negatives. We have a great life and are really really lucky.

But even if my child isn’t as disabled as other children, please accept my help in changing this world by encouraging acceptance of people with differences by focusing on the positives. Little by little we can do this together.

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What you mean the “I’m more disabled then you are” point scoring game?! Yeah we have people who play that here too and I HATE IT. Particularly when people who never need to use a wheelchair moan about not getting funding for one “just in case” I would agree with pretty much everything you said in this post too. I would also take it one step further and say that no two people with identical CP dx (i.e both me and Moo are dx with Spastic Diplegia CP) can understand what the other goes through because it is different in both of us – e.g i have issue w/ my feet which you’ve said Moo does not. But I think that might be where you were headed in this entry anyway.

Comment by Emma (WheelchairPrincess) — October 25, 2006 #

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I agree that even the same type of CP has different presentation in different people. When we started conductive ed, Moo’s teachers would come over to me and remark how particularly tight his legs are and I would be thinking, well isn’t everybody’s. Apparently not. ( I think I should have added a touch wood to my post about Moo’s feet as the physio thinks that this could change if he actually gets up on them)

I met a lovely lady called Sass who has quad CP one day at the shopping centre – I was helping her get her groceries to her taxi as she had run out of room on her power chair. Anyway, she was approached by a woman while I was helping her who basically accused her of taking the woman’s funding for a power chair as she had been on the waiting list for over a year (and Sass’s power chair was brand new and nice and shiny). It was really one of those “what the?” situations. This woman could obviously walk where Sass could obviously not and yet, she thought she was more entitled than Sass.

But my main moan at the moment relates to the articles I read every week in the local community paper. There is article after article by families of children with disabilities saying basically “our life is cr#p” in order to get donations. To me, by doing this, you are reinforcing negatives stereotypes and saying that the person with a disability’s life is less valued than others. That the family should be pitied by “normal” people. I understand the need to try and get money from whatever source you can, but just wish they would do it with positives, not negatives.

And don’t get me started on the family here that basically hi-jacked the government into giving them respite services by saying without it, they would put their child into foster care. I could go on all day.

Comment by terriblepalsy — October 25, 2006 #

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[...] Positives not Negatives, Jacqui from Terrible Palsy shares her frustrations at the point scoring people with disabilities [...]

Pingback by The Life and Times of Emma — January 12, 2007 #

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Ok, I have three deaf and hard of hearing kids. Where’s my trophy?

Comment by Karen — January 13, 2007 #

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[...] negatives when it comes to speaking about people with disabilities. I have ranted about this before here. Actually, I’ve ranted about it quite a lot of times before. Like [...]

Pingback by Here we go again « Terrible Palsy — June 29, 2007 #

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