Welcome to Holland

There is a lots of "inspirational" stuff about disabilities that I find quite frankly rather insipid, particularly the religious stuff. This piece, however, I have found doesn't; it resonates well with my own experiences of disabled children.

The thing I suppose I like is that it isn't preachy, it doesn't say, like some pretty awful stuff does, that this was intended, or still worse, what God intended - there's one about "The Special Mother" by Erma Bombeck that I absolutely dislike, it means well but is so patronising, smug and self-satisfied. The message that Bombeck gives is - you are special and saintly, and how do you know? Because you have been given the gift of a handicapped child by God. It is well meaning but totally insensitive, and the idea of God that it portrays is pretty dreadful, and a complete misreading of John 9:1-3; it is too easy an answer. As Rowan Williams said "Every single random, accidental death is something that should upset a faith bound up with comfort and ready answers", and the same can be said of disabilities.

But this piece is much, much better. This one is more akin to a myth, it tells a story, and does not belittle the pain, which so many others do.

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Welcome to Holland

By Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some bandy phrases in Italian. It's all very exciting.

"After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, 'Welcome to Holland.'

"'Holland?!' you say. 'What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.'

"But there's been a change in the flight plan. They've landed in Holland and there you must stay.

"The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

"So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

"It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

"But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, 'Yes, that's where I was supposed to go. That's what I had planned.'

"And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

"But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

A Cry for Help

A heartbreaking letter in the JEP yesterday. This letter is a cry for help.

It remains to be seen if any of our politicians will comment or look into these kinds of situations. How many young adults are there like this? What contingency plans - if any - are being put in place to help these adults when their parents are not able to cope any longer?

Obviously, politicians can delegate finding the answers to these questions to their civil servants, because after all, that is what the civil service is there for. But how well do the politicians monitor what is being done? And how much personal contact do they make with the families concerned? Do they follow individual cases up, and get reports on them? Is it so beneath them, or are they so busy that they cannot?

I would imagine the particular politicians who would be involved are, in this instance, Ben Shenton, and Jim Perchard, as being involved with Social Services, and Paul Routier regarding any help from the Employment and Social Security side. Paul Routier actually has a handicapped son, although considerably more able than Martin, the young man mentioned in the letter below.

It would be nice if they just made contact with the family concerned. Obviously help has to go through their departments, but we do not elect Senators and Deputies to be aloof rulers sitting like oriental magnates in ivory towers. Politicians should not forget to reach out, forget that it is the individual that matters, and not just the grand design. The grand design - like that of William Beveridge - only comes because someone has listened to many individuals.

Data Protection Note: The Letter is Public Domain, available on the JEP website.

http://www.thisisjersey.com/2008/07/24/what-now-for-my-autistic-son/

From Angela Tuohey.

MY son, Martin, has been a pupil at Mont à l'Abbé School for 15 years. He is leaving this month. Both Martin and the school have undergone many changes in that time since he started at the nursery in 1993.

Before going any further, I want to give heartfelt thanks to the many teachers, school assistants and other professionals who have worked so patiently and tirelessly with Martin over this time, helping our family - he has two younger brothers - through many challenging and difficult patches caused by autism and learning difficulties.

Our family now face the future with some trepidation. Following many meetings and discussions, there may be a small glimmer of hope at the end of the tunnel, although there is still no guarantee of work for our son, as he would need support in the workplace.

There has been much talk of 'tight budgets' and 'limited resources'. Even my requests for Martin to join a youth club - my son is at present non-verbal, i.e. mute - have been rebuffed. However, we have been offered daycare for Martin, for which we are grateful.

To have reached this stage, though, and to have gained help and support for this young man (19 this year) has been an ongoing battle. This, too, at a time when it would normally be possible for parents to have less stress and responsibility bearing down on them after years of caring and coping. A child leaving school should surely be a time of hope and celebration rather than fear and uncertainty.

This is not a plea for sympathy. We love our son dearly and are very proud of his achievements. He has come such a long way from a little boy unable to cope with any change or noise to a young man who wants to explore, learn, try new things. He needs support and help to do this. As his mother, I shall do all I can for him, but time is not on my side.

What happens when parents of disabled youngsters can't cope any more?

Martin and many others have the right to a fair chance. It is not their fault that they are in this situation. There is so much money being spent on roads and development while all these voices go unheard.

Medieval Note - Mental Handicap

This is possible one of the earliest and most sympathetic mentions in literature. It is interesting in that there is none of the distinction which existed elsewhere in legal documents of the 13th century between the "natural fool" and the "witless lunatic".

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Piers Plowman, c. 1377

But there are other beggars, healthy in appearance,

130

Who want their wits--men and women also.
They are lunatic lollers and leapers about the country,
And are mad as the moons grow more or less.
They are careless of winter and careless of summer;
They move with the moon, and are moneyless travellers,
With a good will, but witless, through many wide countries.
So Peter and Paul travelled, except that these preach not
And are no makers of miracles. And many times they happen
To prophesy to the people, in sport, one may imagine.

But to my sight it seems that since God is able

140

To make each one whole, and witty and wealthy,
And suffers such wanderers--it seems to my conscience
That such people are as his apostles, or as his privy disciples;
For he has sent them forth silverless, in a summer garment,
Without bag or bread, as the Book tells us:
Quando misi vos sine pane et pera.
They are barefoot and breadless, and beg of no man;
And though one meets with the mayor in the midst of the city,
He renders him no reverence, no more than to another.

Neminem salutaveris per viam.

150

Such manner of men, Saint Matthew tells us,
We should have in our houses, and help on their journey:
Et egenos vagosque induc in domum tuam.
For they are men of merry mouths, minstrels of heaven,
God's servants and God's jesters, as the Scripture teaches:
Si quis videtur sapiens, fiet stultus ut sit sapiens.

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But they're feeble-minded, men and women both,
Who are lunatic lollers and wandering tramps,
And grow more or less mad in phase with the moon.
They don't care about cold nor take account of heat

And are moving after the moon; moneyless they walk,

110

With good will, but witless, through many wide countries,
Just as Peter and Paul did, except they don't preach
Nor make any miracles but many times they happen
To prophesy about the people, playing, as it were.

And in our view, as it seems, since God has the might

115

To give each being intelligence, wealth, and health
And suffers such to go this way, it seems, in my judgment
They're like his apostles, such people, or his secret disciples
For he sent them forth silverless in a summer garment

Without bag and bread, as the book tells:

120

When I sent you without bread and bag. °
Barefoot and breadless, they beg from no man.
And though they meet the mayor in the middle of the street,
They don't revere him at all, no sooner than another.
Salute no man by the way. °
Such manner of men, Matthew teaches us,

We should bring home and help when they come.

125

And bring the needy and the harborless into thy house. °
For they are merry-mouthed men, minstrels of heaven,
And God's boys and jesters, as the book tells.
If any man among you seem to be wise, let him become a fool that he
may be wise.°