To laugh or cry

Today is significant for more than one reason:

My boys are going to the summer fair at their new school, where I suspect they might buy something for their Grandad Michael’s birthday, which is today.  Happy Birthday!!

Also today, in 1994, my younger brother, who was 17, died of leukaemia.

Paul Guy



Today also marks the day Connor Sparrowhawk died, in completely different circumstances.  Connor (aka LB) drowned in an NHS hospital because he had a seizure and was having a bath unsupervised.      From Connor’s death, a few campaigns have been born, which have resulted in increased awareness of the injustice dished out to learning disabled people and their families, and the lack of importance placed on the voices of both the learning disabled person and their family.  Please read and watch the film about Connor here #107days . So funny but sad.

Sara, Connor’s mum reckons it’s a wild dream to imagine a day when learning disabled people are just seen as the same as anyone else, so much so that we wouldn’t need to refer to people as learning disabled.  At this moment in time, I agree.  I think we are crazy to think that our ‘learning disabled’ people are close to being respected and valued equally, and this feeling is partly to do with the despondency I am feeling right now.  A despondency which is overshadowing a brand new chapter for my son, in a school which is refreshingly transparent and down to earth, with staff who call a spade a spade, and above all show compassion and a reluctance to fit my square son into a round hole.

I attended my sons disability discrimination hearing a few weeks ago, and the decision from the panel was heartbreaking to say the least.  My son’s treatment by staff at his previous school was not discriminatory, according to the panel.  The school has an outstanding rating for goodness sake.  How can an outstanding school possibly use discriminatory practices??? (They also said in so many words)

When I read the decision, I wasn’t heartbroken because I’d ‘lost’ the appeal.  I was heartbroken because it was clear from reading what I did that the panel do not consider my son to be human, and there are two particular points which make me think this.

1. The panel say my son wasn’t discriminated against when his TAs chat, in his presence, about whether it’s been ‘hard to entertain him’.  The reason the panel give, is that my son showed no distress at this comment. (Here is the audio clip entertaining a disabled child)

So, if a person being discriminated against cannot, by virtue of their learning disabilities, recognise that they are being discriminated against, show distress about it, and/or voice their concerns, is it ok to just allow it to continue???!!! Where would this end? This says to me “as long as someone doesn’t know, or can’t protest, it’s ok to do it” and I don’t need to say any more about that.

2. The panel say I have exaggerated the distress my son was experiencing when he was forced to go outside for 20 minutes, against his wishes, and without a coat on a day with a recorded temperature of 9 degrees.  (Here is the audio clip Playtime distress ) .  Bear in mind this is only 6 minutes of the full 20 minutes of distress.

I presume the panel listened to the same recording as everyone else, so it follows that they do not believe my son was in distress, or the level of distress isn’t serious enough to take action.

I can’t help thinking that if a non learning disabled child had been in that level of distress, he or she would have been able to do something about it and each and every adult who witnessed it would have been extremely concerned at the level of distress the child was in.  But what’s more, going off what the panel think in point one, that my son wasn’t distressed by the way he was spoken about, and conversely, how distraught he was in this point, what does it take for a child with my son’s level of need to be treated like a human being??  There is only one thing that can explain these 2 perverse views, and that is my son is somehow considered incapable of feeling, therefore cannot be human.

What does it take for people to stop defending the actions and protecting the reputations of large organisations?  In my experience, they are more than capable of doing it for themselves, so why not concentrate efforts on protecting the child?

I think we can achieve the goal of removing the gulf that currently divides learning and non-learning disabled people, but it needs us all to realise that the kind of treatment my son has experienced, and the neglect that caused Connor’s death is just the tip of the iceberg.

Parents and families are still seen as ‘amateurs’, ‘trouble makers’, ‘complainers’, but I tell you something, you’d have a far bigger mess on your hands without us.


for Paul Guy and Connor Sparrowhawk who both died on 4th July.

Paul Guy in his Iron Maiden phase.

Paul Guy in his Iron Maiden phase.










Categories: Uncategorized | Tags: , , , | 1 Comment

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One thought on “To laugh or cry

  1. Incomprehensible. My uncle had a very similar cry to your son, a cry he ever used when in real distress. It was a signal to all of us to run and help as fast as we could.

    These people must view the world so differently to us that they can’t possibly be human. Not like us and like your son.


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