Celyn

This is Celyn.

I don't often use my blog as a place to make personal or political comments but this is important. I believe it is the same as organ donation - we need people to talk about it. The more people talk about it, the less taboo it is.

The fact is Celyn is disabled. The fact is thousands and thousands of children are disabled.

Please, if you have time, listen to this youtube clip. If you don't have time to listen to all of it then please skip to around 25/26 minutes and listen for a couple of minutes. Listen for the caller called Claire.

She asks this, "What are the benefits for the tax payer in continuing to support the burdens of an unproductive existence of Celyn who will never lead a normal productive life and who is also ruining the childhoods of her healthy and normal brothers and sister?"

Really Claire? Really? You say you think this is the question on everyone's mind. I have never once thought the same thing, I don't know anyone who has ever questioned whether we should "smother" (quote from Claire's blog, "I would hope the midwife would do this to save me the trouble") a disabled child because they may never be a productive member of society able to work and pay taxes. Is anyone reading this now and thinking, "Hmmm, yes, I wonder whether we should smother babies if they may not grow up to be productive?" What is productive? Do I have to have a job to be productive? Can I be productive if I am on benefits? Am I productive if I am severely disabled and need a carer but have a job? Isn't that more productive that a healthy person on benefits who doesn't intend to work? Should we smother adults who don't want to work in case they don't fit the productive mould?

Riven, Celyn's mum, is amazing. How she kept her calm after being presented with that question is beyond me. Here's what she said,

"Well I kind of hope we live in a civilised society where we take care of our vunerable members whether elderly or disabled people. Celyn is actually quite bright so she is one of those disabled people who should she live to 18 there's no reason why she shouldn't get a job."

Claire, "But you said she can't even move!"

Riven, "No, Stephen Hawkins can't move either, he's doing quite well."

Claire, "Well does she goes to school?"

Riven, "Yes she goes to school, she's in a mainstream school."

Claire, "And she can talk?"

Riven, "She talks using a computer just like Stephen Hawkins does."

Cue a long pause where Claire seems to be lost for words having the wind taken out of her sails as she wasn't expecting to find that Celyn is already so 'productive'!

Then, and I quote Claire, "Well it seems unlikely, that erm... erm... you know, she will... I mean... the... the, the trouble with these things is... is, you know, the more you support these things the more it happens and the more people will be asking for money and the more burdened the tax payer will be and... you know, we know the coffers are empty, this country is in debt and... you know... and, and people will always want, you know, money for their stuff as long as it's other people's money."

Claire was asked, "Does this lady think that maybe disabled people should be put down?"

Claire, "It depends on the degree of the disability."

They talk about 'putting babies down at birth' and Claire was asked, "Are you going to put Stephen Hawkins down? He cost the taxpayer a great deal of money with his 24 hour care?"

Claire, "Well... I can't see... what... erm...I don't see that any of his theories help humanity... much..."

Claire is asked, "Claire what do you do to help humanity?"

Claire, "I like to point out these anomilies, ridiculous situations where... where tax payers money is wasted day after day and you have cowardly politicians saying 'Yes, yes, I'll give you anything, just give me your vote, I'll continue to waste tax payers money'."

Claire is asked, "What do you do to justify your existence on this earth?"

Claire, "I... write and I point out these things that are wrong. I have compassion for the over burdened tax payer. That's what I'm about."


Wow, just wow. So your belief is that if we acknowledge these disabled people it will cause more to be created? ("the more you support these things the more it happens") Are disabled people made in a lab and each time we admit one exists they produce another batch?? Her beliefs are so extreme but I understand she has a voice that is being heard. She is a member of the BNP and has a blog where she has written further about this. Funnily enough, her writing (in my opinion) on her blog is vicious in a way that she didn't dare speak on the radio. Funnily enough, she can't be quizzed on her blog so she is free to say what she wants.

Bethany has cost the tax payer thousands and thousands of pounds. Her transplant alone cost thousands. We are not in Riven and Celyn's situation, Bethany doesn't have a profound disability, but she will continue to cost the tax payer money. She is a valuable member of society. She has made firm bonds with friends who wouldn't have come into our lives if it weren't for her health. She has inspired many people to sign the organ donor register. Hopefully one day Bethany's existence will cause other people's lives to be saved. But her existence isn't measured by her liver disease. She is a person in her own right. A brilliant story teller, a wonderful carer, a singer and dancer with a strong sense of humour. She is bright and talented and has the potential to go a long way. Celyn has that potential too but because it isn't packaged in the same way as society expects it's overlooked. That is society's disability, not Celyn's.

On the other side of the coin from the 'over burdened tax payer' there is another story. When Tony and I met we both worked in full time jobs. When Bethany was born we both had full time jobs. We both intended to continue to work and juggle childcare between us, therefore paying oodles of tax and not costing the lovely tax payer very much at all. We didn't chose to have a sick child, we didn't chose to be stuck in a house that is too small because our circumstances dictate that we have a much smaller income than planned. We didn't chose to put ourselves in circumstaces where we couldn't afford to take the children on holiday or buy trendy clothes. We didn't chose to be here. It's been one hell of a rollercoaster ride but it's who we are. I'd really like to know if, in Claire's opinion, it's ok that Bethany wasn't smothered at birth because maybe she'll be able to pay back her debt to the tax payers by working ridiculous hours as an adult? Is it ok if she becomes a productive adult?

And the most important thing is that whilst this woman is ringing up radio shows and diverting the point to whether special children should be allowed to exist and cause a burden, we are losing sight of the original point. What is happening to services for the vunerable? What is happening to the respite centres that are being closed down? How much more will is cost the tax payer if the parents of children with extra needs can no longer cope and feel forced to put their children into care? Where's the budget for the fall out from removing such important services? And where is the soul in a society that can let a family fall apart and cause unfixable damage because it costs too much?

One final thought for Claire... Eloise is Bethany's 'healthy and normal' sister. Eloise has been taken from appointment to appointment for Bethany and had to sit quietly. Eloise has seen Bethany earn lollipops for blood tests and wished she had a poorly liver too because it feels like Bethany gets everything. Eloise has had to tip toe around the house on bad days. Eloise has moved into the parent's accommodation more than once because we to prioritise Bethany at that moment. Eloise has seen Bethany in lots of pain, seen her in PICU, seen her bleed, have procedures and feel very ill. Eloise has held her hand and they have got through it together. Eloise has a deep compassion that it is hard to find in a child so young. She is kind and caring, she has many friends who all want her attention. She loves animals and is a great mum to her dolls. She goes to dancing class and loves to perform on stage. She is a talented story teller and a wonderful hug-giver. She loves pink and all things Hello Kitty! She's a beautiful bouncy child who would be completely lost without her big sister. Bethany is a part of who she is. Bethany is the person she whispers with at night when she can't sleep. Bethany is the person she reads to and snuggles up with when she's had a nightmare. Bethany is the person who would stand in front of the school bully and say, "Hands off my sister!" Bethany is the person who has opened Eloise's world to many extra friends and experiences that have enriched her life. Bethany means she is a sibling and not an only child. Eloise is part of a team and the other part of that team is Bethany.

I had so many things to say when I started this post. I haven't said even half of them. But I think I've said enough. Now please talk to your friends about this (and don't forget to tell them you are an organ donor too!). The more we talk about it the less taboo it is; the more we learn, the less it's scary. The more we realise that everyone has a place in society.

*puts soap box away for another day* :)