Minette Marrin, please shut up.

Special needs is a loaded term. It brings some fluffy connotations of cute, lovable and unchallenging kids, but for the most part it is an incredibly broad definition that encompasses pain, anxiety and uncertainty. And that’s just for carers. Those with special needs have a full spectrum of health issues that fate has cherrypicked for them to deal with. Then there are the ongoing social issues ranging from being ignored to being targetted for abuse.

But we band together as we can. The internet provides us with some wonderful connectivity and allows us, mostly the carers, to compare notes and feel part of a wider community. What doesn’t help is when somebody who’s technically inside the camp, someone with quite powerful influence through her high-profile newspaper column, ends up pissing all over us.

I have written about you before, Ms Marrin, but last year I had the time and patience to have a little fun. Twelve months on and I have neither the luxury nor the inclination for gentle ribbing. Your oppositional stances on this issue of intellectual disability are confusing and downright dangerous to a minority of people who need advocacy, not mixed signals.

You can write beautifully, and with touching insight. I wonder if this is because your younger sister was born with a mental handicap. Having a son with Ds certainly gives me an insight I would never be able to buy, and when you wrote this piece about the gifted singer Susan Boyle appearing on X Factor or whatever show it was, and the feeble-minded audience reaction to her, I sensed understanding in your DNA.

…the jeering audience of vain young people trying to catch the camera’s eye and the preening judges of this contest are the nasty boys and girls of fairy stories who mock the poor old lady because she is not young and beautiful, only to be punished when her real self is revealed. And their punishment is to be revealed as they truly are – heartless, thoughtless and superficial. They will grow old too, to be ignored in their turn, and then they will understand that appearances are not everything. And those who despise people who are not thin, not young, not beautiful and not cool will one day find themselves despised in exactly the same way, by people just like their younger selves.

But then you swing to some unforgiving default position as is your way, seen here in last week’s article in The Times. As if your special needs insight gives you the right to choose for all, you have decided that it all boils down to the cost of care workers, and what becomes of a child born to intellectually disabled parents. I’m not about to dismiss these as insignificant factors. They are not. But nor am I about to let them decide whether people we don’t know should be prevented from ever living. While you ponder the grubby cost, from the cosiness of Britain’s unimaginable wealth in the eyes of four fifths of the world’s population, let me direct you to the case of Kelly Fitzgerald, from New Zealand.

Go tell Kelly that a) costs; and b) a future that only your crystal ball seems capable of divining are the two reasons that you have for slamming the door on any idea of her being a parent. Have you seen the way that her mother gently ensures that Kelly doesn’t get any more credit than her siblings? Have you? She’s a stunning tower of virtuous equality, that woman, proud of all her children in an unfussed way, and you and I could both learn from her. Mostly you, though.

Another avenue you could learn from, Minette, is closer to home. Learn from the person who said that ‘Susan Boyle managed to rise above [the bullying and belittling sneers of the studio audience]. She found herself in church choirs and karaoke, restored and triumphant in music; it’s a story of the undefeated spirit.’ Learn from yourself. If you can sort out your own Jeckyl and Hyde handicap, Minette, and use that column of yours to advance the cause of life with the altruism you can sometimes show, you too can help to ‘break the grip of this sneering world’.

Otherwise find a more worthy opponent for your bias. Intellectually disabled people have enough to deal with.

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Aimee Mullins has 24 legs: Now what disability would that be?

First of all, go to college online by visiting the TED talks. Riveting talks by remarkable people, free to the world. Their words. All sorts of topics, all types of people, all walks of life, all corners of the globe. Ideas worth spreading, they call the concept. Hell yes. And when you see Aimee Mullins you better bet they’re worth spreading. She actually pushed me that bit further when I saw this vid, into the Am I actually a bit envious category. Watch, and listen for the ‘That’s not fair’ bit. I love this.

Thanks to my very good friend Karen Ardiff for bringing this to my attention. 🙂

And one more thing! If by chance you are in the Leinster region, are free this Saturday 21st, and can help with some focus group research to help newbie Ds parents, then Down Syndrome Centre could do with your help. Get in touch with Sheila.

On Saturday 21st November Down Syndrome Centre, with the generous support of Price Waterhouse Coopers, will be organising a focus group to establish recommendations/guidelines that parents of children with Down syndrome will make to support new parents with their child’s development in their first year. This will take place in PWC’s new offices on Spencer Dock in the IFSC from 9.30am to 1.00pm.

We hope this information will form a ‘roadmap’ of sorts which will greatly assist new parents in knowing what they should be doing/feeling etc in the first months of their new baby’s life.

Using blogs and social media to spread positive news

I mentioned that I was meeting the staff from Special Olympics Ireland recently. I had a talk with them about the benefits of using social media – such as this very blog – to help causes like themselves. There are a lot of online ways to talk to people, get their attention, give them your message, fundraise and so on.
The presentation I made to Special Olympics dealt with just three of these: Facebook, Twitter and blogging. People who blog, like many of you, are more often than not up to speed on just how useful tools like blogs are, but it’s easy to forget that not everyone is aware of how powerful online communications can be. My friend Hammie, for instance, uses her Facebook page as a fantastic outreach point for parents or guardians of children with autism, and it is a shining example of how to maximise new communications. Still, there’s a leap to be made for a lot of people, and very often a fear of launching into the unknown.
This is the presentation I put together to try to give the gang at Special Olympics Ireland a perspective on the many benefits of social media. If some of it makes no sense (seeing as I’m not actually standing there in front of you boring the arse off you) then just ask and I’ll try to fill in any gaps.