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.

Sunday, 10 August 2008

The cost of language

It's been an interesting weekfor me. I've been at the receiving end of a cyber-bollocking. I've not been sure how to react which is why it took me some time to write about it. I'm still not entirely sure about all this - but it's time to post. Maybe the process of writing will help to enlighten me further.

An e-mail group I belong to has been vigorously debating the post-modern idea that the personal is political and the political is personal.

You see, some issues came up on the group that have dealt with language around disability. I have been very vocal on language issues and have very strong feelings about this. I don't like it when my children get reduced to their disability. I encounter people on daily basis who refer to my kids as "the CP boy" or "the little CP girl" and to us as "the CP family". The same battle is fought by other families who try to eradicate terms such as "the Downs girl or "the autistic boy" because they reduce a person to their disability. I mean, come on, you wouldn't find it polite to refer to your colleague as "the breast cancer woman" your sister as "the bipolar girl" or your grandfather as "the Alzheimer guy". Make the analogy with race, and see if it sounds discriminatory…

I constantly have to tell people that my kids are kids, and we are a family foremost, and yes, we happen to deal with CP, but that is not who my kids are or what our family is about. Of course these tings are very real, but we can choose our words carefully.

Language is important. I think it's a vital tool in acceptance and inclusion, and the power of language cannot be underestimated.

Well, a lady on the group took exception to my political posts.

This mother has a young preschooler with complex medical needs, and spends a lot of time in hospital, trying to survive. This is increadably hard for her and her entire family (the other children have to miss their mother for long spells while she is in hospital with their sick sibling). That she's not too interested in the politics of language is obvious, she has more pressing matters to deal with.

Last Thursday I send the group a report by Access Economics on how much CP costs the nation (follow the links here to view the full media release from CP Australia ( PDF - 23 KB) or download the full report, The Economic Impact of Cerebral Palsy in Australia in 2007

The report is a good thing. It gives us better weapons to ask for better services, funding to disability programs (like PADP) and of course, better payment for Carers. I mean, compare $306 average weekly cost to the $90.45 fortnightly Carer’s Allowance. It's an interesting report and a vital lobbying tool for parents and carers We need this sort of information. We just have to be careful that it doesn’t get mis-used. Just because they are disabled doesn’t mean my kids are costly scroungers….

So I added a note to the group that "I’m not so happy with having our children analyzed only in terms of what they cost" and referred to a post by some of the group members on the Carers 2020 website where they argue that it's time to change our thinking. The money spent on disabled kids (therapies, equipment, etc) is not so much a "cost" but actually an "investment" in their future. Help them out now, and one day they may be bringing home silver medals in the Paralympics, run a business, be a father, or get a job and pay their taxes.

My comment on the "cost" language came after some other posts on language, and was one too many for her. It doesn't really matter what she said. I probably should have thought "she's havign a rough time" and let it pass, but when she claimed that the whole group was unsupportive and dragging her down, I got defensive. I felt that was unfair to the group, anyone, that includes her and me, is free to post about any issue that is relevant to their situation as parents of children with CP. So I replied, and one thing let to another, and ended in some messages that were not nice (and I am equally guilty as accused). Best not said too much about it. But one of the things she wrote to me in her anger did rather upset me.

She wrote

You know, really Heike, I just think that you just don't get it. Whilst you are so worried about every label and anything that you can twist around to take offence at, there are other people in this group who are just concentrating on meeting the needs of their children so that they survive another day or week or year.

At first I was a bit offended by the "reverse competition" of "my kid is worse than yours" in the commnent. I didn't think that was very useful in a support group, and it's not really the level I want to decsend to.

But then of course, she is right.

I am very lucky that none of our kids have any medical issues to deal with. I don't have a clue what she, and others like her, have to go through. If my kid was in hospital, or having regular seizures, or whatever, I probably couldn’t give a toss about language either.


As far as I am concerned, they are all different sides of the same coin.

There are those of us struggling very hard to keep our kids alive and in this world. There are others who are just trying to stay functional in this world. And others - with less life-threatening issues at hand - who are trying to make that same world a bit of a better place for all our kids, and all those who are "different" from the norm. And we all go through periods where different things take priority.

Language matters, for all our kids. One day, these kids will no longer be quite so medically fragile and go to school. Or the shops. Or the playground. And come home in tears over something others have said.

Language matters to me.

Where is the line between “disabled kids cost that much” and “disabled kids cost too much”?


Glee said...

Hear hear Heike!

Besides no one analyses how much abloid kids cost the general public generally.

And you keep on about the language as I know you will.


Susan, Mum to Molly said...

Aaaah, Heike.

Just for the record - I am 100% totally on your side in this. I hope you knew this already.

I have my theories on why the other mother is behaving as she is and attacking all & sundry, and I suspect it actually doesn't have much to do with you or even the issue at hand.

I suspect that she is just incredibly angry at 'life' at the moment (I know the feeling well), and is lashing out at any 'soft target' she can find.

Its certainly a lot easier to throw virtual stones at someone who you never have to actually meet/see again, than take it out on family, doctors, etc.

Please please please try not to take this too personally... WE LOVE YOU!

Susan, Mum to Molly said...

And also, just for the record, I absolutely agree that language is very important.

I really like that paper on People First Language, found here:
http://ftp.disabilityisnatural.com/documents/PFL8.pdf (can you turn this into a proper hyperlink for me??)

I also think this issue is going become an even bigger topic of discussion with the release of the movie "Tropic Thunder" here and in the US...

Jacqui said...

I've spent the weekend reading up on the Tropic Thunder and wondering if we are really making any progress. It's amazing how everything can go back ten years in one foul swoop from hollywood.

Your last line is the thought that has been going around my head since I heard of the report. I've seen cost argument as being a reason why extremely premature babies shouldn't be revived (quickly followed by the argument of high levels of resulting disability). So I'm treading carefully whilst waiting to see which direction the report goes in. Hopefully, not the way I suspect it might.

For the record, I support you completely in what happened, and I'm sorry you had to go through it. I was going to say something earlier but have had my own dramas over the weekend and couldn't write anything that didn't include copious swear words and aggression. I hope you will forgive me.

Liz (Poppy's mum) said...


I too agree with you and feel that whatever issues the other mum is facing (I think Susan's hit the nail on the head), she had no right to attack you as she did, and her heavy-handed tone towards others in the group is out of line.

By you raising awareness to the 'bigger' issues of language and perception, we parents lucky enough to share this insight gain a stronger, smarter and more united voice - which as you know can only affect all kids (and adults) with disabilities in a positive way.

Please don't be disheartened by one small voice. Keep up the great work, and thankyou.

Jodi said...

I guess I look at it this way. The other mom is probably overwhelmed with the needs of her child right now(beeen there) and so it is a really good thing that there are people like you who can fight the advocacy battles that need to be fought for all of our kids.

Nelba said...

The problem is that language matters especially in a life-and-death situation. Because language shapes how doctors and nurses think about our kids.

Cost is a valid point to raise too, because the perception is that somebody like Loren or Nathan (Carina's son, who was denied ventilation until they managed to find a different doctor and who died in the end)cost too much. In state hospitals here, which we fortunately never had to use for Loren, they would likely not have been ventilated should they have needed it.

In the end we all fight on the same side. So, I'm sorry that things turned out this way. I do think that you are right to raise the issues you do.

Dave Hingsburger said...

Language defines us, it tells the world what we think about others. Racist language defines us as racist. Sexist language defines us as sexist. Disphobic language defines us as disphobic. It's fairly simple. The only difference is that people are comfortable with their prejudices regarding disability. It's our job to ensure that they 'get' that we are listening and we are reacting to their language. You know I'm on your side and am proud to be there.