Thursday, 15 November 2007

Pass The Bucket

My son has been asked by his school to wear his clothes back-to-front or inside out for Children In Need. As I write, I really wish I'd had a T-shirt printed with some choice words emblazoned on it. But that would be wrong. Using my child as a vehicle for a message I want to put out, well it's not on is it?

A while back David posted this on Jerry Lewis and the MDA Telethon. I love all his observations on the destructiveness of pity. Especially these:

Pity promotes the view of charity rather than the view of inclusion.

Inclusion encourages respectful dialogue to discuss ways to adapt to the obstacles of society.

Pity towards people with disabilities gives society the false impression that disability and happiness cannot coexist.

I have come out against charity events before, and Children In Need and Comic Relief are in my opinion guilty of falling into the pity trap. Well, actually they don't fall into the trap so much as set it. They positively encourage pity. And the people who watch this tripe are generally the ones who can be found humiliating themselves in some cringeworthy charity stunt with a big cheque at the end of it. The rest? I really can't understand why they watch it. But in between telethons, these very same people are the people who will give you a certain look when you are out in your wheelchair, who will say things like "Oh, but you're so young." And other such nonsense.

Of course Children In Need does not just focus on children with disabilities. No, you'll find plenty of Young Carers featured, in need of pity because of their plight. They are generally to be found near a window, gazing out of it wistfully. Children imprisoned by their duty to their disabled parent. Children deprived of laughter, happiness, childhood.

I will say only this. My son and I have experienced far more laughs and happiness since we created an environment where my disability is accepted, talked about, respected and increasingly forgotten as we find things to do that we just enjoy, regardless of my impairments.

The environment we have created is called home. It couldn't flourish within the confines of a relationship that was unaccepting of my disability. So I left and home flourished.

Yet we are frequently on the receiving end of unwelcome pity. Being a single disabled mother, well it must be just bloody awful mustn't it? Hard, yes. But I don't want pity and neither does my son, who has flatly refused to be called a Young Carer. If people locally and on a wider scale could be a fly on the wall, they might be surprised to find that my son is happy here and I am not a freak. I'd like Children In No Need Whatsoever to come and do a film at our house. They may catch us cooking, watching Top Gear, doing homework, having one of his friends over for tea or...laughing, yes that's laughing. Because we do have a laugh. Just like normal people.


Cusp said...

I know just what you mean about the Children in Need day. Like all these ''thons' they are a mixed blessing. The various charities are crying out for funding and, for some, CiN will be the way they get some of it ( having worked for charities and in the Voluntary Sector I know how hard the funding lark can be) but on the other hand it seems dreadful that such charities and the needs of disabled and disadvantaged people have to be mnet through such a tawdry affair that plays on images of pity.

The other point is that I'm never really sure of the motivation of the celeb participants. For instance, isn't it odd how the Spice Girls have such a high profile involvement this year just as they are about to try and relaunch themselves on the world. If monied celebs want to give money to charity why don't they just do it and keep schtumm ? I feel a similar 'yukiness' when my son, who is disabled has to go on the school minibus which is emblazoned with 'Variety Club' or 'Sunshine Coach'. Why can't it just be another minibus ? Why can't the Variety Club keep their generosity to themsleves and leave a bit more dignity for those they want to help ?

The other part of your post leaves me in a quandry, if I'm honest. I can tell that you and your son are very happy together and I've absolutely no doubt that you have made the best decision for you and him. However, there are children who are the main carers of their parents and sometimes of siblings as well and there really isn't enough support for them, so almost anything that makes other people aware of that and their needs is valuable --- even if it has to be some old newsreader demeaning herself by prancing round in her skimpies !!

seahorse said...

Cusp: absolutely spot on re celebs, and totally agree about the minibus emblazonment too. I've written before on the true nature of philanthropy, and how it really should be inconspicuous.

Re Young Carers. It's the label thing. He was never comfortable with it and his experience of the couple of outings he went on with the local group was to be bullied by older kids. This, and the fact that I had to watch him being interviewed by a patronising social worker when he was only seven, turned my stomach. He wasn't and isn't my main carer. Social services are supposed to be ensuring that by providing funds for a PA. In the meantime I am ensuring it by wearing myself into the ground. I know some children have to do a lot for their relatives with disabilities. It isn't their 'plight' that should be filmed but the ineptitude of agencies that are supposed to be helping. By filming a family 'in need' it implies they are to be pitied, their situation is sad, etc. Should we be raising awareness by drawing on pity, by being crass? Young Carers came to talk to my son's school. He told me he felt really embarrassed because their talk made him feel uncomfortable. If it had been handled sensitively, in the spirit of inclusion, wouldn't the opposite have happened?

Cusp said...

No I absolutely agree it's the ineptitude of the agencies that should be highlighted and no it's not right that a kind of Dickensian attitude of pity should be encouraged. It's dreadful that your little chap felt so bad at school too. If he needed to speak to someone then they should have done it one to one in a more secure environment. I know too how patronising some 'professionals'can be -- just the tone of voice and body language can make you want to throw up.

All the same, many people in the general population just don't realise how much is left up to the kids because of SS's ineptitude and many people don't (sometimes won't) have a PA. They either don't know such an option exists, it's not available to them or they throw out the very idea in order to 'keep it in the family'. Not all parents are as enlightened as you or think about their kid's welfare like you. There are some very complicated realtionships around the 'cared for' and the 'carer'. Sometimes a kind of weird co-dependence develops. If you could come here I could take you to a house a few doors up where it's happening now. They're lovely people but just don't see how much their kids are doing to hold their situation together. Do they not see or not care ? Is their pride too great or is it ignorance ?

The cutbacks in SS's services are frightful. We asked for some respite care for our son at one point in order to give us all a break and leave us more time with our daughter ... all set up .... and then SS turn round and say there have been cuts and we can no longer offer you this service because your son isn't 'disabled enough'. We don't want pity either but, at that point, we really needed support and practical help. We don't have relatives to help --- they're either dead or miles away.

Please don't take any of my views as criticism of you. It's just that, because I've been 'on the other side' -- working with Social Services, offering possibilities to disabled people and their relatives etc. I know that in many ways the way you are dealing with your situation is exemplary and there are many people in similar situations to you or I who don't know as much as we do about what's available, or don't want to know or know and refuse it all for whatever reasons.

seahorse said...

cusp: I didn't take it as criticism at all, and it's good to hear a point of view from 'the other side'. Plus responding to comments helps me cement my train of thought. I sympathise with you re cutbacks. My department is so cutback they employ someone just to answer the phone and tell people they are too cutback to take calls. Like that makes sense...
Thank you for your encouragement, as always it is much appreciated :-)

David said...

Thanks so much Seahorse. Great post! Hope you're doing well.

seahorse said...

Hi David, no thanks to you really as your post got me thinking and contained some very brilliant and spot-on statements. Not doing too bad, thanks. Must get over to yours more often to find out how you're doing too :-)

Robert Weetman said...

I like your comments on the label 'young carer' and I've added a link to your post from here:
I hope you approve. Obviously, let me know if you don't.

I'd really like a full article on the site about this issue. Would you or your son be interested in submitting something? The website is just a voluntary enterprise & hobby so you don't gain anything but a small audience and my gratitude.

If I might add: I think that cusp is making some important points, but they don't undermine what you said. The fact that some people are in difficulty (etc) doesn't change the fact that the labeling and victim imagery around 'young carer' are issues.

Thanks for an interesting post.

seahorse said...

Robert: thanks for your feedback and the link. I'll have a think (though getting my brain to think at present is proving difficult). I'd like to write something but it'll have to be when I'm able to do the subject justice. But I do appreciate your interest.

Robert Weetman said...

Great. And if you feel like speaking more about this issue I'd very much be up for a conversation. I'm doing some work with some organisations in the new year - which might touch on these issues. No pressure though - life's probably busy enough.
Thanks for the thanks.