Sunday, 13 September 2009

Thoughts from the week.

From a youth group leader "I'm all for integration, but..." But it's complicated, but she'll scare the others, but she won't be able to do all the things the others can do, but she's poorly, but we do quizzes and she can't join in, but the others will be upset, but none of the others have their mums stay with them.

We start on Tuesday.

From a training on safeguarding children with disabilities. "These children do not have disabilities, they have impairments. It is society which is disabling; remove the disabling environment and the child will not be disabled any more'"

Hmm, so my child can't hold her head up; can we switch gravity off please?

I get the social model of disability; I really do. I'm all for removing barriers to facilitate integration. Absolutely ramp those steps, lower those light switches, raise those tables, adopt inclusive games and switch that light to a non-glare one. My daughter is still blind though; however you adapt things, she's still not going to be able to see them. And ramps are great, but pushing a wheelchair still takes more effort than walking, just being upright takes more energy; the ramps don't cause the disability to disappear, they just mean it's less of an inconvenience than it might otherwise be.

It's dishonest to pretend the only barriers are those imposed by others, or by the physical environment. Learn the child's communication in order to understand what they are saying, give them a voice to protect them from abuse. Marvellous. But what about those children still functioning on a newborn level? How about those children for him alert newborn would be progress? All behaviour may well be communication; but it's not exactly on a par with "That man hurt me" . Of course we should be listening to non-verbal communication, we should be giving children who have something to say a means to say it. But we should not be brushing off those children who are still pre-intentional communicators. It's dishonest too to pretend that giving a child a single switch is giving that child a voice. It's giving that child a means to interact with their environment surely, and it's not a bad thing, but it isn't going to magically protect that child from abuse.

"We need to teach children no one has the right to hurt them". "Children must have the right to consent to medical treatments". "Children should be taught about good and bad touching" Fine - but what about the child who needs either painful daily physiotherapy treatments or else will have to go far more painful complex surgery? Perhaps that child can make an informed decision; I've certainly seen an intelligent 7 year old make such a decision for themselves - and not the decision the parents wanted them to make. But how about when that child is 2? How about when that child has an extremely limited understanding of the world around them? Are babies with congenital hip dysplasia consulted before being put into hip spicas for six months? And good and bad touching - how intimate is the giving of a catheter or a suppository or a pessary? If that's what you're used to, what's a bad touch? Daily injections? "Children should not be restrained." Car seats? Straps to prevent the child from falling out of a wheelchair? Helmets to prevent head injury during a seizure?

Where along this route does acceptable end and abuse begin? Arm gaiters to stop the child punching themselves in the face? Arm gaiters to stop the child punching someone else in the face? straps on a wheelchair to prevent the child from falling out? Straps to hold the child in a good position? Straps to prevent the child from getting up and walking around? Cot sides to prevent the child falling out of bed? Cot sides to prevent the child crawling out of bed? Cot sides to prevent the child escaping? Medication to control seizures which has a heavily sedating side effect? Medication to control pain? Medication to sedate? Medication to knock the child out? Who decides?

Whatever your feelings on the acceptability or otherwise of any of these things, someone somewhere is making those decisions all the time. It isn't enough simply to say that society's barriers can be changed and removed and that if everything is made fully accessible there is no disability. Glasses don't give a blind child perfect vision. Hearing aids don't give a Deaf child perfect hearing. Wheelchairs are not the same as a functional pair of legs - and the legs/wheels/ramp scenario overlooks the fact that a physical disability often doesn't simply involve the legs.

It places a huge burden on the disabled child/child with disabilities/child with an assortment of impairments/child with special needs/whatever the correct term is this week to be expected to conform. There's a ramp, allergens have been removed, there's a loo with a changing bench and there's a table big enough for your wheelchair to fit under. Bingo! Now you're not disabled, you're just the same as all the other girls and boys in your class. What do you mean it's tiring holding a pencil and the other kids look at you funny if you use a keyboard? You have a helper, how can it possibly be a problem to ask her to pick up the things you've dropped rather than kneeling down to pick them up yourself like the other children do? We've told you it doesn't matter that your feet don't fit into the school shoes, no one minds you coming to school in slippers. And of course the other children are interested; they want to know why you need that wheelchair; answer their questions and they'll get used to you. Yes I suppose it is rude to stare but it's rude to point it out too; and you need to get used to it. You just have to put up with that, of course they'll want to have a go at pushing you round; it's fun. Come on, who wants to be the special helper today?

Which wasn't exactly where I intended to go with this post. But I'm listening to Mog cry, and cry, and cry. She's seven. Most seven year olds do not cry and cry like this. Most babies don't cry and cry like this. She's not feeling 100%, she's tired, she's sore, and if she lies on her back then she drowns in her own saliva. So she's propped up on her side but that isn't how she wants to sleep, so she's cross. And she's been upset so long her evening meds have lost their sedating effect, and she hasn't noticed that the painkiller should have kicked in by now. She's actually now crying in her sleep; when she gets like this there is no comforting her. I could pick her up (giving her a seizure) and snuggle her in to me but she is beyond human language at the moment; gone back to that utterly distressed place she used to live in as a baby, and where she retreats to whenever life gets horrible. And I'm sitting here chewing over more and more "We are failing our children with disabilities by assuming they are incapable" soundbites, and thinking that yet again, those children with the most complex disabilities are even more excluded from things as the world slowly becomes more inclusive of those with milder or less global disabilities. I am angry; how dare someone tell me my child is not disabled. I wish Mog had been there; if she'd been alert then she'd have given them the stink-eye, and if she hadn't, well then I'd have challenged them to find a way of including her in any meaningful way in what was going on.

A pause; Mog has just had a heavy duty dose of sedative; it, some gentle music and a light show have achieved what my voice and touch could not, and she is settling to sleep. I wonder how most seven year olds fall asleep? This may not last; the kittens are intrigued by the lights slowing on the ceiling and are attempting to catch them.

And a happier thought. Communion.

Let us give thanks to the Lord our God.
It is right to give thanks and praise.
It is indeed right,
it is our duty and our joy,
at all times and in all places,
to give you thanks and praise,
holy Father, heavenly king,
almighty and eternal God,
through Jesus Christ our Lord.

Therefore with angels and archangels
and all the company of heaven,
we proclaim your great and glorious name,
forever praising you and saying

Holy, holy , holy Lord,
God of power and might.
Heaven and earth are full of your glory.
Hosanna in the highest.

Standing in a church, with the company of the church, and The Church, and the full company of heaven. Centuries of tradition, a real "When we've been here ten thousand years, bright shining as the sun, we've no less days to sing God's praise than when we first begun" time. Ageless; a glimpse of infinity. Comfort in the well-known words, tweaked though they get from time to time but still central to the service. A glimpse of eternity; visions of seried rows of angels, something out of Revelation perhaps.

And comfort outside church too; the words carrying beyond communion, beyond the moments it takes to share bread and wine, carrying the weight of two thousand years and more, The full company of heaven; all those who have gone before, all joining with the praise and the worship, all being in Communion far more than we can ever hope to be here.

It is our duty and our joy; at all times and in all places. It's easy to praise God for a beautiful sunset, the day ending in a blaze of heaven's reflected glory, autumnal leaves glowing golden brown, the scent of apples and cinnamon rising from the oven. And how can I not join in that praise?

It's harder in a spiritual winter. Coldness, loss, death, separation, suffering, loneliness, isolation, fears and worries all crowd in. But praising, I join not just with the angels and archangels (and I'm not sure that I have much experience with angels), but with the full company of heaven. Everyone who is, and who will be, in heaven. That full company of believers, dead, alive, not yet brn. Friends, family, heroes, the full works. It's an awesome thought. Not my own effort, but joining in unity, in harmony, in complete understanding and perfect love.

Forget the pearly gates, forget the floaty nighties and the harps, forget the image of Father God looking like some Greek Ancient, and forgetting all the imperfections - joining in with praise and worship is to make that heavenly connection here on earth, even if only for a minute. It must be an interesting sight. All the different denominations, so many people convinced theirs is the only right way, charismatics, evangelicals, reformed, orthodox, roman...those whospeak in tongues and those who are convinced glossolalia is demonic, and somehow through all the imperfections a glimpse of the Truth.

Stepping out of church, bringing that Truth home for the week. It's harder. But it makes everything else so much easier. It makes me realise the pettiness of the earlier part of this post, and makes me consider deleting it, before deciding to leave it up there in the interests of being real, not a polished version of myself. And it's a Truth which helps me see things not just through my own eyes. But I still don't enjoy scrubbing poo out of the carpet.



Tina said...

Amen, one Lasting long Amen
Blest anthem of eternal days
The fulness of the rapturous song
To Christ the Saviours endless praise.

Amen, Amen it rolls along
Re-echoing from the throne again.
Be ours to mingle with the throng
In that eternal loud Amen

I was just giing to write Amen to your post but the words of the Hymn just kept flowing.

Doorless said...

Amen, Again I say amen!
I echo your sentiment about hiding under the carpet so to speak the disabilities. It galls me that the Elf will be pushed out of grade school into middle school next year where she will spend most of the day in a room at the far end of the building and supposedly be taught how to care for herself and life skills! She functions on a 3-6 month level and does not identify with older children! I double that she will even leave for music or art! So sad!
I hate it that when they have musicals they make a big deal out of someone holding the noise maker and pretending the Elf knows what and when to make it work. I refuse to participate in this charade!
She will even be made to go to high school where she will be learning? more life skills? Sure! They are going to cure her!
I am so glad for church where they do not pretend my girls are not disabled and still love on the for who they are.
Today the Princess threw a full blown crying jag because we were leaving church! I think she thought they would have ice cream again! It amazes me she never gives any grief getting up early for church. Any other day she cry's and carries on if you try and get her up before 11:00am
Sorry I didn't meant to go off like that.

Doorless said...

I am so sorry to have taken over the last post. But after I got off I thought how selfish I was. I do hope Mog is better soon and know how helpless one feels when you have no way to reach in and even be able to give comfort. There are times our children just cannot accept it and nothing makes a mum feel worse than those times. I will be praying more for Mog.
Hugs, you are a good mum. I see it in your words and how much LF is allowed to be herself.

Elinor said...

All the well-meaning blah in the world about disabilities seems to ignore also the expertise of the parent. I'm glad you didn't delete anything.

Riven said...

well said. For everything.

Becca said...

The social model is a way of talking about a person's experience of the world - nothing to do with impairment, really. For instance:
My ability to speak is slowly but surely leaving me. Some mornings when I wake up I think it's already gone, until some minutes later it sidles back, trying to pretend it never went anywhere. This is my impairment (one of many!) and it is not changed by anything other than my neurology. The disability that I experience, though: that's about to what degree I can exert influence over my world and can be amplified hugely by the nurse who just won't listen, the OT who literally runs out of the room rather than listen, watch and wait for what I have to say.

The social model makes no claim that every experience of disability is avoidable - far from it - merely that what we experience is a product of our environment and cannot be typified by describing the ways in which we differ from that elusive, mythical ‘norm’.

Tia said...

Thanks Becca. Don't suppose you'd be interested in replacing our trainer would you? I get so tired of oversimplifications, the whole "Social Role Vaolorisation means Normalisation which means making them more normal, more like us" type thing.

Am going to play with the fuzzy furballs before I get all worked up again.

Becca said...

I'd be delighted! Will just need a couple of hundred miles worth of diesel money and space for me, profiling bed, hoist, toilet chair, two personal assistants and a timeshare in a nurse or three. Easy!

Semi-seriously I might be visiting a friend in Cottenham early next year, if there was any possibility of it being helpful I'd be happy to talk to whoever.


Blog Widget by LinkWithin