The right to make decisions for ourselves

Grace Kennedy and her mother Phil

“All of us need protection under the law, I have no problem with that. But Grace is not being protected, she is being excluded. She is being discriminated against because she has Down syndrome.”

That’s a quote from Phil Kennedy, mum of Grace, from an article in today’s Times Online by Sarah McInerney. The ever watchful Suzy Byrne tweeted it. Thank you, Suzy.

In essence, there’s an archaic hole in our laws and it makes life needlessly difficult for our people by not allowing them to open a bank account, write a will or buy a house. By ‘our people’  I mean of course people with Down syndrome, autism, Alzheimer’s, intellectual or learning difficulties, mental illness, older people and anyone really that ‘might look or sound a bit funny.’

Grace here was prevented from buying a house beside her mum and dad because of her diminished responsibility. Now I can think of whole heaps of people on the house-buying conveyor belt, from rezone-happy politicians to high and mighty developers to financially irresponsible bankers, who could show the beautiful Grace just exactly what people with ‘diminished responsibility’ look like. The list sure as little apples does not include her.

Nor does it include the Kildare group People First, which was refused permission to open a bank account for the same reason. The bank in question wasn’t named in the report, more’s the pity, nor was the individual who told the group’s treasurer Anne Finlay that legal advice had been given to the bank not to open accounts for “people like her”.

So there you have it. A bank, in Ireland, in 2010, that doesn’t want money.

Explain to me again what constitutes an idiot please, for I am a bear of very little brain.

I have promised myself that I won’t get worked up by this. It’s just an anachronism in the law, and this is how massive legal systems, built up over centuries, reveal their inadequacies and need to be updated. Apparently, if you believe the lore, a London taxi driver is legally allowed to have a poo wherever the need should strike him or her. They’re also required by law to carry a bale of straw with them at all times. It’s the law, see?

Anyway, there is a fix. It’s the Mental Capacity Bill 2008, and it’s due to be published. Except we’re still waiting, a year and a half since it was introduced. Not many votes in it, a cynic might say.

When (I refuse to think If) it’s finally enacted in law the act will change things in that it will have to be presumed that a person has capacity, unless it could be proven otherwise. Here’s what Inclusion Ireland  have to say:

On March 30 2007, Ireland was among the first countries to sign the UN Convention on the Rights of Persons with Disabilities.

One of the central areas of the Convention is Article 12, Equal Recognition and Capacity on an equal basis with others. Adults have the right to make decisions about their lives – for example to accept or refuse medical treatment, to deal with their property and money and to have consenting sexual relationships. People with an intellectual disability have the same rights to self-determination and autonomy as everybody else.

Under the Lunacy Regulations (Ireland) Act 1871 a person who is unable to manage his or her own affairs can be made a Ward of Court. The impact of being made a Ward of Court on a person’s life is monumental: a person cannot have a bank account, cannot marry, cannot defend or initiate legal proceedings and cannot transfer residence (for example from a disability service), without the permission of the High Court.

The lunacy would be in not having the Mental Capacity Bill enacted into law. There’s a petition on the Inclusion Ireland website which I’d urge you to sign, to even up the score a tiny fraction. It’s here.

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On the use and power of the word retard

Had I the heavens’ embroidered cloths,
Enwrought with golden and silver light,
The blue and the dim and the dark cloths
Of night and light and the half-light,
I would spread the cloths under your feet:
But I, being poor, have only my dreams;
I have spread my dreams under your feet,
Tread softly because you tread on my dreams

He Wishes for the Cloths of Heaven, W.B. Yeats

 

I want to try to explain what happens when I hear people throw the word retard, or retarded, around. I’ll draw on my special powers. I won’t try to judge or harangue or cajole, just explain as best I can.

When people I know use the word, it’s usually the put-down that signals the end of argument, heated or otherwise.

Can’t take it any further with you, retard.

What are you, retarded or something?

You’re such a retard.

In 99.9% of cases they’re not thinking of my son, who actually is retarded, judging by certain societal and medical barometers. (Hmmm.) In fact they’d most likely be horrified to take their words to that conclusion.

I don’t have that luxury. My mind instantly goes there, because I already know that that is the only logical conclusion. The absolute, only one. Where else could it possibly go? Think about the word. Your intended context is only one facet of it, but who your utterance may attach to, once it’s made, is entirely beyond your control. I didn’t, once upon a time, need to consider that, but those words, whether you mean them or not, whether you’re furious with someone or are just being flip with your friend, will always lead back to my son Jacob. And because he is retarded (by some standards, as we all are by some standards), he will not be as well able to defend himself from the accusation of being so, whether through someone’s careless word, or someone’s hate-filled one.

I mention this to you because it is important to me, and so are many of you. I need you to know that you can hurt me this way, and I know that you will not mean to. Some time back I didn’t think it would, but now with each mention in my ear, retard tears a piece of me. I want to grab people, connect and have my feeling flood their bodies. It does not matter that you did not mean it or you cannot feel it or want to counter me with your no doubt well meant points about political correctness. Those who know me know that I am politically incorrect, whatever the fuck that means. Because words have power. I have no idea how powerful this word will be to Jacob, and as yet, from the safety of cute two year old-ness, he’s relatively untouched. But that is changing a little bit every day, as the defences of cuteness give way to coarser features, to imperfect speech and a lack of social fine tuning. The world, with its retarded ways, is moving in.

I know I won’t turn the tide. It will not stop. It’s much more ingrained as an idiom in the US than on this side of the Atlantic, possibly because we have so many rich Irish put-downs, but nevertheless it has a place in the lexicon here too and it won’t be shifting any time soon, I believe. And I’m not addressing the hate use of the word. All of those folks stopped by when we had our heated debate about Tropic Thunder last year. And most of them were binned because they were reta- oops! Close one.

No, I’m talking about the simply careless use of it by people I respect. I’m not going to pull any of you up on it individually. It’s actually not my place. I hope you see it here and, if I’ve managed to explain myself, maybe you’ll think about it. Not just for Jacob’s sake, but for his Dad’s, and his Mum’s, and his brothers’ too.

It hurts. That’s just the way it is.

 

There’s a petition here if you’re the petition-inclined type.

The Almond Tree

All the way to the hospital
The lights were green as peppermints.
Trees of black iron broke into leaf
ahead of me, as if
I were the lucky prince
in an enchanted wood
summoning summer with my whistle,
banishing winter with a nod.

Swung by the road from bend to bend,
I was aware that blood was running
down through the delta of my wrist
and under arches
of bright bone. Centuries,
continents it had crossed;
from an undisclosed beginning
spiralling to an unmapped end.
II

Crossing (at sixty) Magdalen Bridge
Let it be a son, a son, said
the man in the driving mirror,
Let it be a son. The tower
held up its hand: the college
bells shook their blessings on his head.
III

I parked in an almond’s
shadow blossom, for the tree
was waving, waving at me
upstairs with a child’s hands.
IV

Up
the spinal stair
and at the top
along
a bone-white corridor
the blood tide swung
me swung me to a room
whose walls shuddered
with the shuddering womb.
Under the sheet
wave after wave, wave
after wave beat
on the bone coast,
bringing ashore – whom?
New-
minted, my bright farthing!
Coined by our love, stamped
With our images, how you
Enrich us! Both
you make one. Welcome
to your white sheet,
my best poem.
V

At seven-thirty
the visitors’ bell
scissored the calm
of the corridors.
The doctor walked with
to the slicing doors.
His hand is upon my arm,
his voice – I have to tell
you – set another bell
beating in my head:
your son is a mongol
the doctor said.
VI

How easily the word went in –
clean as a bullet
leaving no mark on the skin,
stopping the heart within it.

This was my first death.
The ‘I ‘ ascending on a slow
Last thermal breath
studied the man below

as a pilot treading air might
the buckled shell of his plane –
boot, glove and helmet
feeling no pain

from the snapped wires’ radiant ends.
Looking down from a thousand feet
I held four walls in the lens
of an eye; wall, window, the street

a torrent of windscreens, my own
car under its almond tree,
and the almond waving me down.
I wrestled against gravity,

but light was melting and the gulf
cracked open. Unfamiliar
the body of my late self
I carried to the car.
VII

The hospital – its heavy freight
lashed down ship-shape ward over ward –
steamed into night with some on board
soon to be lost if the desperate

charts were known. Others would come
altered to land or find the land
altered. At their voyage’s end
some would be added to, some

diminished. In a numbered cot
my son sailed from me; never to come
ashore into my kingdom
speaking my language. Better not

look that way. The almond tree
was beautiful in labour. Blood-
dark, quickening, bud after bud
split, flower after flower shook free.

On the darkening wind a pale
face floated. Out of reach. Only when
the buds, all the buds were broken
would the tree be in full sail.

In labour the tree was becoming
itself. I, too, rooted in earth
and ringed by darkness, from the death
of myself saw myself blossoming,

wrenched from the caul of my thirty
years’ growing, fathered by my son,
unkindly in a kind season
by love shattered and set free.

Thanks to Iwona Duma for sending me the link to this poem by Jon Stallworthy. It’s incredibly moving and very much of its time. It’s so very layered that I can’t seem to stay too long. But hopefully I’ll visit it often.

Self help parent power: a truly remarkable force

When Jacob landed among us we scattered like pigeons at the arrival of a fairly tame looking kitten. Confusion, fear blah blah, you know all the rest of it. One of the corners I ran to was Rollercoaster.ie. Their Special Needs forum kept me sane and gave us comfort from some kind people who were further down the line from us and not nearly so freaked out. It’s Irish oriented, but it’s helpful for anyone who speaks English. It was my first real introduction to online forums, and more importantly it was my first meeting with Hammie.

She has become someone important to me, and to a lot of other people with special needs kids. She’s direct, driven relentlessly to help her kids (both have autism), clever, blunt, foul mouthed with delightful frequency and always, always willing to have a go at it. ‘It’ can be absolutely anything at all. Hammie, in other words, is the most clichéd Australian you could hope to imagine if you were asked to invent an Aussie based on every stereotype you’ve ever heard. Ok, I’ve never even heard her talk about barbies, but she does have a troop of kangaroos and a pet croc at home. Would I lie? To you of all people?

The point I’m successfully avoiding here is that H has done it on a big scale this time, by grabbing technology by the throat and putting a team together to invent a new means of communication for non-verbal children. That’s all. No biggie. It involves iPhone technology and is a potential lifeline in communications for a whole stratum of kids in Ireland and worldwide. Kids whose development is essentially mothballed through an ineffective, unwilling or non-comprehending health service.

I’d encourage you to see some recent posts on the issue here at Hammie’s blog, and below is a national news feature on the development of the application. If you think you know someone who might benefit from this fantastic new communications tool, then talk to Hammie. I’ve no doubt she’ll tell you something you don’t know. She’ll probably offer you a few shrimp before taking you surfing too.

Our Jacob: powernapper

So I’m in the office at home, working away, and after oh I dunno, ten minutes the repetitive sound finally manages to get my attention. ‘Hello, puppy calling do you want to play with me?’ Another Vtech chart topper in the endless hit parade of drives-you-demented ditties that they have.

There are two standard voices that come with Vtech toys, the English one and the American one. Both of them are unhinged. The English one comes with an absolutely impossible pertness from a cheerful school of elocution that has NEVER existed outside of the minds of directors of pertly cheerful British war movies from the forties. You wonder how many fluffy woodland creatures had to suffer to counterbalance this sheer evil naiceness.

The American one sounds like it’s been sleep deprived and force fed pure sugar for days and is GOING TO MAKE YOU CHEERFUL IF IT’S THE LAST THING I DO! Smile with me!!

But I’m going mildly off topic. I’d been at my desk, remember. And after ten minutes of the insanely happy ‘Hello, puppy calling do you want to play with me?’ I wondered why Jacob was being so quiet. This was what I saw outside the office door.

Move round to the side and you see where the insane jollity was coming from.

He slept that way for ages! Hard pillow, crap soundtrack, he didn’t care! And if you look close, you can see the marks on his face from pushing the big Vtech button.  We all got scarred by Vtech, although I think they’re mostly disappeared.

Course, the mental anguish you go through never really leaves you, does it? Fellow sufferers know the insane stare. They’d sympathise if they weren’t already driven to distraction. All it might take to push them over the edge is to whistle a tune from the First Steps Baby Walker.

That Vtech will mess you up. Kids, I know what I’m talking about. That Vtech will mess you up. I think I might be even repeating myself over and over. I know for sure Jacob’s mother does. Watch out, that Vtech will mess you up.

I’ve seen the unwitting mums, pushing it on their kids. It tears families up, maan. And woe betide you if you mix it with alcohol. It might seem funny at midnight, but at seven a.m. Satan’s sour refrain (You know it. It goes ‘Hello, puppy calling do you want to play with me?’ over and over and over again) will steal your very soul. (Now alternatively that could be a Christmas party hangover, I will say. The results aren’t all back from the lab.)

Have a Vtech Christmas everyone!!! 😦

A Dishwasher Service Engineer calls

‘I’ll tell you what kids, I wasn’t crazy about the rinse cycle
but the drying programme works like gangbusters.’

‘I’m going again. I’m going again!
Now where’d I leave the damn keys of this deathtrap?’

* Do not try this at home. Who needs mopping up two gallons of soapy water from the kitchen floor? That’s what neighbours’ kitchens are for.

Summer sports camp in Laois/Kildare

Image by Dru Bloomfield

Found this over on Irish Autism Action.

Summer Sports Camps are running in conjunction with the Laois, Kilkenny, Carlow and Kildare Local Sports Partnerships and Special Olympics Leinster.

It’s for any child with an intellectual disability between 6 and 16 years of age. Siblings welcome. If it sounds like you then check out the details at the Autism Action site.

Oh, and a quick apology for the lack of everything round here. A Jacob update is on the way when I can get him off the stairs and in front of the keyboard. 🙂