What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Monday, 19 November 2007

Reverse Competition?

If you read the comments on my posts, you may have noted that Anonymous didn’t really like the letter Mister Determined’s school wrote to the Council to get a disabled parking spot outside the school gate. I’ve been thinking about it all day, mulling it over. Then, suddenly, I think I “saw” the issue.

The problem lies not in the school’s letter. It’s the fact that, as the letter states, Mister D. “refuses to be treated differently or to use a wheelchair”. Anonymous feels that this line is written “as if those lazy kids in their wheelchairs just aren't trying enough”.

That got me thinking. I’ve been mulling this over all day today. Anonymous was getting to something here.

My first reaction was to defend the school. But I think that might not be at the heart of this issue.

It’s a fact that Mister Determined now refuses to use his wheelchair. He has learned how to walk independently, albeit in a wonky and wobbly way. At the moment, he has a deep cut under one toe, is missing a piece of skin the size of a fifty cents coin under the ball of his other foot, and has a grazed knee and elbow. His legs and knees are full of bruises. These minor injuries are all due to the way he walks. It’s not as if walking comes to him easily. But can I blame him for wanting to?

Somehow, I just don’t think the kid is making a value-judgement by choosing to walk over using his wheels. I think he’s just doing the best he can to fit in, like any 7 year old would do. Surely no one would suggest that I get him to use a wheelchair to be on even par with those kids born with CP who do? He’s able to walk because he worked hard on this skill for many years and, because he’s lucky because he has, as he puts it “only a little bit of CP.” I don’t think he thinks any less of other kids who use wheelchairs. He still uses his for longer outings (like a recent school trip to the zoo) and knows the wheels are a tool to get you places (it’s people’s reaction to it that is the problem).

I don’t know who Anonymous is, nor do I think that he or she is judging my kid in any way. But Anonymous has hit a sore point here for that I have often struggled with to put into words.

Why is there this “reverse competition” amongst parents of disabled kids. You know the “mine is worse than yours” kind of competition.

I guess this “reverse bragging” is nothing unusual, it happens in many playgroups and mothers groups. You remember, competing about whom had the worst birth, the most interrupted nights, the sorest boobs, or the biggest puker. Most of the time, it’s some harmless and good natured fun. But do we - parent/carers and our kids - really need this? We get judged so much as it is. Do we need to judge each other as well?

I regularly get that “Oh, but your kid is really mild” reaction from other parents. I never know how to react to that.

I know there are many kids out there far more severely affected by CP. Does that invalidate my experience, my story? Does that invalidate the struggle my kids face? Should not talk about our daily issues, because they are insignificant compared to those that others face? Should I just shut up?

Sometimes people tell me in no uncertain terms that I’ve got nothing to complain about. Sometimes people stop up when they realise I’ve got two – that somehow seems to bring me on even par with a mother of one severely disabled kid. How does that work?

Mister Determined finds walking very difficult. He falls on a daily basis. He falls on grass, on our wooden floors, on asphalt and concrete. He bumps against walls and furniture. He is a walking talking bruise. He was terribly upset today, because the open skin on his foot meant he couldn’t join his classmates in their weekly swimming lesson, the highlight of his week.

These are minor issues compared to those some of the kids with CP have to deal with each day. I would not want to de-value them. And it’s about high time society changes it’s attitude towards people with disabilities – and can I recommend a wonderful
UK add posted on Terrible Palsy that is a must see.

But I can only tell our story.

This blog is about my personal experience, my journey, as determined by my kids and their lives. I enjoy writing it. I think it has a right to exist.

9 comments:

Anonymous said...

Heike, I absolutely agree that your blog has a right to exist and I for one really appreciate that you take/make the time to write it.

I also agree that some parents seem to approach comparing notes over issues & frustrations as a kind of "pissing competition" to see who has it tougher. UGH!

Then there are the parents who seem to wear their child's additional needs like a badge of honour... I suppose, like our children, we are all different.

And I guess I shouldn't really judge unless I have walked in their shoes. People sure do find many different ways to cope with difficult circumstances, many of which I wouldn't use myself.

You are right, you can only tell your own story - and the challenges you and each of your children face are very real. You can only 'walk' the road that is at your feet.

Thank you for sharing your journey.

Susan, Mum to Molly
(I have to be 'anonymous' too because I don't have a web address to enter!)

Jacqui said...

Saw your link coming into my blog - thank you.

I've read your previous post and I've got to admit that I thought similar things to your anon poster (by the way - I also really hate "suffers"). As you know, Moo uses a wheelchair. That doesn't mean that he doesn't want to fit in - he does. He tells us often that he is going to walk to the shops. And in his mind, he is definitely going to ride a motorbike - preferably the one we buy him for Xmas (not).

But perhaps the reason why your anon commenter was so sensitive to this is that it is an attitude that you often come across when you have a kid in a wheelchair - is that people think he is ambulatory the majority of the time and s/he is just being lazy (heaven forbid if the kid is using a power chair). Dave Hinsburger (Chewing the Fat) has talked about this on his blog.

I'm sure that Mister Determined does find walking very hard indeed, particularly on rough surfaces. And he is someone that you should be incredibly proud of. Of course you should be sharing your lives.

And last but not least - the great thing about blogging is that when you get a comment that you don't like - you can delete it. I once had someone take exception to the name Terrible Palsy, but didn't do it in a very positive way - so I accidentally hit delete. Ooops.

Jacqui said...

Saw your link coming into my blog - thank you.

I've read your previous post and I've got to admit that I thought similar things to your anon poster (by the way - I also really hate "suffers"). As you know, Moo uses a wheelchair. That doesn't mean that he doesn't want to fit in - he does. He tells us often that he is going to walk to the shops. And in his mind, he is definitely going to ride a motorbike - preferably the one we buy him for Xmas (not).

But perhaps the reason why your anon commenter was so sensitive to this is that it is an attitude that you often come across when you have a kid in a wheelchair - is that people think he is ambulatory the majority of the time and s/he is just being lazy (heaven forbid if the kid is using a power chair). Dave Hinsburger (Chewing the Fat) has talked about this on his blog.

I'm sure that Mister Determined does find walking very hard indeed, particularly on rough surfaces. And he is someone that you should be incredibly proud of. Of course you should be sharing your lives.

And last but not least - the great thing about blogging is that when you get a comment that you don't like - you can delete it. I once had someone take exception to the name Terrible Palsy, but didn't do it in a very positive way - so I accidentally hit delete. Ooops.

Jacqui said...

sorry for the double post.

Heike said...

Hi Jacqui - like your way of accidentally on purpose dealing with a comment you don't like ;-)

I so know what you mean. We got lots of comments and stares in the days that Mister D. used his wheelchair for longer distances, say in a shopping centre and then got up and walked over to a chair in a cafe. People would say things like, no wonder he can't walk properly, he doesn't get to practice when sitting in that things. Once or twice i got so fed up that i did the "ohmygod, it's a miracle" thing...

No one in their right mind would think someone with specs is just to lazy to look properly, or someone who needs reading glasses just needs to practice harder. Why do people feel the need to judge when we're dealing with things like walking? All our kids want to do is get around and live life, and people should just keep their judgemental *#@&$ to themselves and let our kids get on with it.

And for the record, i love Terrible Palsy - it sums it up so nicely - and am very envious of the brilliant blog name.

Rob said...

You know I was just about to comment and use the 'glasses' comparison that you just used - its a good one.

This whole thread has been a bit of an eye opener for me.. and it comes back down to the fact that the road I am traveling down is very different to the road that your life (and some of your commenter's) has given you.

Put simply.. I was amazed to read here that there are people in the world that would suggest that someone in a wheel chair is simply being lazy. What gives? Am I out of touch with the world? Heck I hope not. But then again I still get appalled by the level of racism that I witness in this country. And I guess that its the same virus that is breeding both of these things - it still confuses me as to why it occurs though.

Rob said...

PS: I wouldn't delete someones comment.. everyone is entitled to their views no matter how wrong it is :)

Shannon said...

This is your story. Your have every right to express your joys and your heart breaks. It is interesting that in a community that so longs for support (I was looking for it when I found your blog) some get wrapped up in the relative tragity of the child and seem to discount the effort of both child and parent. I would never say that my son works harder because he walks with a walker instead of using a wheel chair. It is just the way he is progressing. I would also never say that any one mothers heart break is worse than another when she sees her child struggle.

Thank you for sharing your story and your strength!

Shannon said...

This is your story. Your have every right to express your joys and your heart breaks. It is interesting that in a community that so longs for support (I was looking for it when I found your blog) some get wrapped up in the relative tragity of the child and seem to discount the effort of both child and parent. I would never say that my son works harder because he walks with a walker instead of using a wheel chair. It is just the way he is progressing. I would also never say that any one mothers heart break is worse than another when she sees her child struggle.

Thank you for sharing your story and your strength!