Jean Vanier: a mother’s perspective on vulnerability and abuse

It was May 2019 when I first encountered John Vanier. A quiet morning with Radio 4 murmuring in the background, the polished voices of media intelligentsia companionably disregarded as I swept and wiped away the debris of breakfast.

Thought For The Day was on. Not being the world’s greatest fan of organised religion, I usually find it pretty easy to close my ears when this programme pipes up. But on that day the words of historian and Telegraph writer Tim Stanley, touched me profoundly.

He spoke of the recently departed Jean Vanier, who had died aged 90, considered a living saint for his work in establishing the worldwide L’Arche charity, a network of over 140 communities where people with learning disabilities are at the heart. Where those with and without disability live side by side, in community and equality, living simply but with a crystal clear eye for what matters most in this life.

Stanley spoke eloquently of Vanier’s embodiment of ‘upside down economics’ where people are valued for who they are, for their heart, for their capacity to love and be loved.

And in these words I recognised my own experience, as a parent of a child who has intellectual disabilities. Who has taught me so much, and brought my own hazy world view into unclouded focus. Whose purity of heart, honesty of emotion and sheer joy at being surrounded by love and fun give short shrift to any pride or envy I might feel towards others with more conventional success, opportunity or money than I.

I also felt hope.

Hope that in this world of increasing violence towards people and planet, there really are living saints. Those who are motivated by good. Those who truly see what I feel privileged to see, and experience in my daily life, and have the means to make way for it in society. Who listen and learn from those who don’t speak verbal language, are not politically powerful, nor able to influence with money or action, but can show us through just being who they are, what human existence really is. That is isn’t money, or status, or belongings. That it is love.

And I felt connection.

Connection to a network of people who lived and experienced my world. And whom I could perhaps consider a safety net. If it all went deeply wrong in my world, the part of my mind that needs a plan b had decided I could retreat there, to a L’Arche community. To put all my religious stereotypes and suspicions aside, and to immerse myself in that life. As a family we would have been welcomed, I have no doubt.

It also made me feel safer about what might happen to my son after we are gone. That there might actually be people in the world who would love and value him, taking care of more than just his basic needs and helping him to flourish and find community.

Vanier spoke to me in a way that few others in public or my own life have done so.

Most people that we meet in our lives are kind. We experience very little stigma. And yet I know, I can feel, that under the surface of most people’s kindness there exists a huge gulf of understanding. Perhaps they feel sorry for us, they find my son’s disabilities sad, or find some strange inspiration in our determination to live a normal life.

And that is where the gulf lies.

Because I know they don’t really get it. They don’t value my son for who he is. Not really. They see deficit. Loss. Hardship.

Society still pushes people with intellectual disabilities to the margins, but Vanier wanted to place them at the very heart of society. He believed that this way people, and society, could find not just grace but peace.

I found Vanier inspiring. I wanted to tell everyone about him. To show them that intellectual disability isn’t the life sentence of hardship that so many believe it to be, and that here was a man of influence who could convince them. More powerful perhaps than just another (clearly deluded) mother of a disabled child boring on about how her child actually has a great life, and finds happiness and fulfilment, despite his disabilities, and brings joy to all he meets.

But this week brought terrible news. Not the galloping spectre of coronavirus, or even the verdict of the Weinstein trial. Something just as malevolent for all who are connected in some way to L’Arche, however distant and for those with vulnerable people in their families.

Jean Vanier, once considered a prophet for our troubled times, has been exposed as an abuser. A report produced for L’Arche International has shown that Vanier engaged in ‘manipulative sexual relationships’ with women who worked in his communities over a period of 35 years.

Of course, we know nothing of whether Vanier’s sexual and spiritual abuse stretched beyond those who worked for him towards the vulnerable within L’Arche communities. The charity has been keen to point out that there is no evidence to suggest this but how we can know with any certainty, is surely a discomforting impossibility.

This news has left a deep and piercing cavity of distrust among those who love and care for people with intellectual disabilities.

For it challenges everything we thought we knew about how and where abuse happens.

The narrative of late has shone a light on institutional abuse of people with autism (a neurological not an intellectual condition), and people with learning disability. We know from this narrative that when vulnerable people are in the care of people who lack knowledge or compassion, in places where safeguarding the system and the financial bottom line matters more than helping an individual to flourish, that devastating abuse happens.

We know that when love is stripped away from care, we end up with Winterbourne View, Whorlton Hall, the unforgivable mistreatment of Beth, and Connor Sparrowhawk, and the many many others that have not hit the headlines but sit hidden in Serious Case Reviews in NHS filing cabinets.

But when love and abuse sit side by side? It becomes more than a little complicated. When a shining light in our world is revealed to be nothing more than an illusion, a monster in disguise, how do we begin, or continue to trust those who seemingly love our children?

I have wrestled with this thought since the weekend when the Vanier abuse story broke. And the only conclusion I can come to is that we have to trust our guts. For when something seemingly beautiful has an ugly heart, it is usually our guts that can tell us, well before any cognitive or rational recognition can be found.

Last year when I read one of Vanier’s books, ‘A Cry is Heard’, I was inspired by his words but I also felt a tinge of discomfort. One that I brushed aside at the time but this news has shown me that I should have listened harder.

The way Vanier wrote of being brought to personal grace by being in the presence of people with intellectual disability felt usury to me. The entirety of his book centred on his own path to peace, his own redemption and finding of true meaning. The voices of the people within his communities were conspicuous by their absence.

And as I turn my thought to those who support us and care for our son, I know that I have only felt this same sense of disquiet once. A therapist slightly too entranced by my son, a warmth of welcome a touch too familiar, an approach just a little too personal. Seemingly extremely knowledgeable, and deeply compassionate, but I couldn’t shake my discomfort. I kept quiet about it, as others who saw the same therapist apparently didn’t feel as I did, crediting this person with having changed their lives. But we didn’t go back.

Maybe I was right, maybe I was wrong, but the exacting parallels of feeling I had in the presence of this therapist, and while reading Vanier’s words, have taught me that perhaps the best way I can protect my child is to keep listening to my gut.

What happens after I am gone I do not know. But for now, while I hope I never have to use it, my second brain is firmly in gear.

When is progress, progress, and what is it anyway?

When is progress, progress, and what is it anyway?

For the last 17 days I’ve been an honorary member of the V-Gang. Persuaded by the ever growing throng of vegans in my family I thought I might give it a go too, in a ‘god I am actually 40 now and should really get my act together’ attempt at improving my health, and because, well, climate change.

In that time I’ve consumed a massive amount of greenery, learnt how to cook aubergine and discovered that far from craving cheese, it now (to me) stinks like a farmyard slurry pit. I have more energy, my wobbly ankles don’t ache and creak in the mornings anymore, and my hair, skin, nails and gut flora seem to be loving the micro-nutrient injection.

I was warned there might also be some weird side effects, which I totally (silently) poo-pooed. I was told that about three weeks in, I might start to feel like my brain has been re-wired, with vivid dreams and memories sparking from distantly buried neurological quarters, freshly exhumed from a (now disintegrating) meat fog.

I thought this was totally stupid of course. Until it began happening to me too. I can only describe it as akin to reshuffling a dusty old deck of playing cards. Every card has been there the whole time but just hidden out of sight within the pack. Now, each card is being exposed to the air, its face on display, ready to be picked and matched in ranks or suits, to be made sense of in a logical way.

What has appeared for years to be a bit of a joker in the pack, an irritating mosquito of a memory that I just couldn’t swat away, or make any useful sense of, was a random visit to a palm reader I made in my late teens, at one of those rip off psychic fairs that most sensible people know to avoid.

For decades, the voice of the palm reader has rung in my ears at just about every opportunity I give myself to decide I am a total failure at life and need to do better (which is just about every day).

His words to me were: “you need to pick a path, and stick on it, otherwise you will spend your whole life bouncing around from one thing to another, and never make progress at anything”.

He may be right, he may be wrong, but I’ve never been a huge fan of the straight and narrow. Which is probably a damn good thing because life in our house is anything but linear.

The bit that I had forgotten, but that has come back to me in a fit of vegetable based clarity is that the palm reader also told me I would have two children, but that it would be ‘complicated’. He didn’t know how, or why, but there would be some uncertainty ahead.

On that front, he hit the bullseye. There is nothing straightforward or commonplace about either of my children, or the way in which they progress through the world. Back then, sitting in front of the palm reader, the old me would have decided that was a pretty terrifying prospect, but now?

Now, I am in awe of both of them. I couldn’t be prouder of their differences.

I know that most people come here to read about Lawrence. To find out what progress he has made (plenty, in his own unique ways), or whether he has a diagnosis yet (no, all medical tests still say ‘normal’).

I know you don’t come here to chew the plant-based fat with me over the merits of avocado or hummus, or to join me in rediscovering random bits of my card based memory filing system. So, here’s a little update on the boy, and the ever growing list of valuable things he’s teaching me about life.

In essence, Lawrence can now do things that for some time I stopped hoping might ever happen, like being able to communicate what he wants. But also he still can’t do things that for a long time I thought would make life unimaginably awful if he didn’t, like, say, walking or talking.

Luckily, I was wrong. Almost nine years in to raising Lawrence, life is very far from unimaginably awful. In many ways, it’s totally ordinary, and in others it’s wildly different from the every-day.

The measures of progress and happiness that I thought would be there as some kind of roadmap through parenting just aren’t present in our lives. But there are others that have shown their faces instead. The rites of passage are different but no less in value. Perhaps it’s just like occupying some kind of third dimension, or a weird dream where everything is familiar and unfamiliar in equal measure.

I won’t ever describe Lawrence by rolling out a great long list of conditions, disabilities and forboding acronyms. In parent carer circles, this seems to be a way that a lot of parents talk about their children, and I understand why, but it’s not for me.

I have also learnt that describing or measuring him by conventional milestones is not something I want to do. Because I know how it feels to be on the receiving end of that, when you can’t join in with a conversation because your child’s life experience and abilities are just so different.

Also, when I step outside of my black-and-white thinking brain for a few moments, I see that progress isn’t linear. It’s up, down, sideways and back to front. And that our arrows don’t all point in the same direction. Sometimes they change direction, too. Often, many times over.

While there have been leaps and bounds in his development in the last year, I know that this could readily change, so to commit too much value on them is, in my mind, misplaced.

I don’t believe it’s right that anyone’s contribution to the world or personal value should be measured just by a tick-list of societal-approved achievements, what they can ‘do’ or how much they have.

So, of the boy, I will say this instead.

1) He’s hilarious and gets funnier and funnier every day. He has developed the most raucous laugh that tells anyone in the room he’s a total nonsense maker, on the look out for devilry and mischief. Joining in a joke with his favourite people is Lawrence totally on top of his game. Monkey business is his middle name.

2) He’s nearly 9 and has sprouted an attitude to match. My daughter likes to tell me that it’s always the Year Fours at school who are a total pain in the neck and true to form, Lawrence seems to be following that pattern. At home, at least. He knows just how to rock this ship when he so chooses.

3) He knows how to communicate in ways that most of us forget we can do, because we have become so hyper focused on conventional language. With a look, a touch, a reach or a facial expression, Lawrence can pretty much run the show. He also simply can’t say one thing but mean another. There’s no pretence, socially complex small talk, reading between the lines or pass agg weirdness with this boy. This makes him a better communicator than most, in my mind.

We’re working on specifics, as sometimes it can take a while to figure out which particular season or episode of a show he’s asking for, or whether he hates his dinner or is just trying to sidestep to get to pudding (he’s very particular and he’s not shy of telling us when we get it wrong).

I’ve learnt that just because a person can’t talk, or write, or press buttons on a computer to say something, it doesn’t mean they can’t get their point across. And actually all we need to do is listen differently.

4) He has learned how to express love with unmistakeable clarity. With the whispery touch of his kind hands, a smile that surfaces from deep behind the eyes and lingers when it connects with your own, a contented sigh and a full body lean-in to a cuddle. Only the other day, he inch wormed into the kitchen on his belly, just to give his dad a kiss, before inch worming back to his programme on the tv.

5) He’s showing us again and again that he’s probably way more attuned than most of us to the things in life that matter. And for me, this is the big one. He’s pretty delighted with who he is and just couldn’t give a crap about what others or society expect. He wants his people around him, to enjoy each day for what it brings, to entertain and be entertained, and to be at one with the world around him. A regular re-set, taken by sitting at the water’s edge, watching the waves and listening to their rhythms, sets him up whatever comes next in his day.

6) His health is good. For really, all the value judgements and assumptions that can be made about disability and quality of life, ultimately it’s his health that can have the heaviest influence over his enjoyment and fulfilment in life. And right now, he’s on top form.

And so what of progress? Well, many of the conventional indicators of progress just don’t apply. And that’s ok. Except for one.

There’s one place where we’re stuck. On an endless loop. And by god do we need him to move on.

This time around, Lawrence embraced Christmas with gusto. He got it. So much so that he came home with a Star of the Week award from school for having a ‘very positive attitude towards his Christmas Show’.

Well the positive attitude didn’t go away when the decorations came down. Of course there are no more Christmas performances happening at school, so he’s transferred his enthusiasm to one, single, five minute long Christmas themed episode of Peppa Pig.

Mr Potato’s Christmas Show. Featuring everyone’s favourite Christmas vegetable, Little Sprout.

Where, apparently, the magic of vegetables never ends.

We really wish it would though.

Or maybe there’s a lesson in there too… hey V-Gang?

Finding new (SEND parent shaped) feet

Finding new (SEND parent shaped) feet

This too shall pass…

A parenting mantra I learnt in the early newborn bundle shaped days. Every challenge was just a phase. You find your feet, again and again. Even the most smothering days of clingy round-the-clock feeding and pop-eyed nap refusal, that felt like they would go on forever in a Groundhog style loop, faded one by one into a comfortable routine.

It gets easier! I promise… well, not easier, it just gets different. You are different…

These words from a friend with older children were cold comfort in the early confuddlement, but she was right. Far beyond the newborn chaos, parenting my eldest now she is nine is still a challenge. But I am different. I found my feet.

Common knowledge has it that your second is a breeze.

You know what you’re doing second time round. It’s so much easier…

And that’s where my fellowship with mainstream parenting consciousness came skidding abruptly off the beaten path.

Sure, second time round I knew how to breastfeed, change a nappy, bath a baby. I knew how to operate a pram, wear a sling, get a baby to sleep, choose a weather appropriate baby outfit. I knew how to make it possible to have a shower at any given point in the day with a newborn in tow. And drink a cup of tea while it was still hot. All the stuff I had no idea how to do the first time around and that felt either terrifying or impossible the first few times.

But did I know how to keep this boy safe and alive and well? What was it I could see in him in those early newborn days that seemingly no-one else could?

It was 11 months before I attended my first SEND baby group. Before that I hid in the familiar, busied myself with revolving around my toddler, relieved but privately troubled that O was a placid and easy baby. I tried to ignore the words from the screen that told me to be fearful, even though I had sought them out myself through many a night of raking the far academic corners of the web for reasons why my baby was different.

I knew he was different even if no-one could tell me why. I wanted to protect him from the world until I could fix him. Physio, sensory therapy, developmental specialists, postural equipment, the latest neuro research from across the world. I would do whatever it took. Research and learn whatever I could. Work as hard as I had to in order to fix whatever was wrong.

But at that SEND playgroup, on a grey Tuesday afternoon in January, for the first time I felt like maybe I didn’t need to fix anything at all. My baby wasn’t broken and nor were our lives. In my first glimpse of this new world I found kindness and fun. And actually, it didn’t feel all that different after all.

If I could have stayed in that little SEND playgroup shaped bubble, I should think I’d have found my feet as a SEND parent much quicker than I did. But outside of those doors the world grew slowly more unfamiliar each day that passed.

I didn’t know where we belonged. This too wasn’t ‘passing’, it wasn’t ‘getting easier’ and I had no idea what I was doing at all.

We drifted.

And then we ran away to Cornwall, caught up in the excitement of new lives far away, in a place where we could find out feet again.

But even the heady hopes of a fresh start by the sea couldn’t shield us from the difficult path ahead.

The obvious challenges of SEND schooling, healthcare & social support aside, decisions about what to do with the house, what car to buy, whether to go on holiday abroad,  – all typical family enterprises – become wrapped up with so much anxiety that years went by before we did any of them at all.

How could we renovate our tumbledown cottage when we didn’t know what O would need? Lifts? Hoists? How would we afford it?

How could we buy a new family car when we didn’t know if O would be able to get in and out of it independently or would forever need our help and two wheels.

How could we go abroad on holiday when we didn’t know when he would next have a seizure and stop breathing? Or how to sit him up in a plane seat, even.

We had drifted, and got stuck.

It is only now, five years on that I think I’m finding my new (SEND parent shaped) feet.

Last year, we went on our first holiday abroad with O. We all had such a brilliant time we are daring to do it again.

This year, we’re finally getting round to renovating and adapting the house with a lift, adapted bath suite and a hoist. And it doesn’t look like a hospital but a home. I might even stretch to say a tasteful one at that.

On Friday, I bought a wheelchair accessible vehicle. And it is seriously cool.

All these things had become huge roadblocks to us having a normal family life but suddenly they seem to be slotting into place. The desert storm dust has settled.

Perhaps my friend was right after all. It hasn’t got easier. It won’t get easier. But it is different. And I am different too.

 

 

 

 

Why do we need special schools?

Why do we need special schools?

It’s a grey, cold morning in November. The sort that really ought to be a mandatory duvet day. It’s hard to get going and the thought of sticking a limb out from the warmth of bed into the cold air is far from inviting.

But Orange is up. Chatting to his toys in his room and ready to start his day.

In this house, we are lucky. Every day Orange goes off to school smiling. He can’t wait to go. Once the uniform is on and the porridge is eaten, he’s looking out the window for his taxi and giggling all the way down in his lift.

For Orange, school is a little different than it is for most children. Unable to talk, walk or hold a pencil, sitting in a conventional classroom would see him lost and isolated. Even with 1-2-1 support, the academic curriculum and bustle of a typical school day would leave him unable to learn, or to join in with the other children.

Beyond pre-school age, mainstream education just wasn’t an option, as much as we hoped it might be.

A school day for Orange doesn’t include grammar, dictation, times tables, French or computer programming like it does for his sister. But it does teach him to access his world, to use his body, to be creative, and to be confident and social, in the very best ways he can.

Instead of learning to read, he is read to. With raucous laughter, his unadulterated joy at a ‘That’s not my…’ book, Supertato or Oh No George shows us that while he may not be able to read the words on the page, the narrative of a story is far from lost on him.

Instead of phonics, he takes part in ‘communication group’, where the children follow Makaton signing or learn to press a button to make a choice between two simple objects.

Instead of running about in the playground, he splashes in the hydrotherapy pool, the only place where he has meaningful independent movement.

Instead of PE, he has rebound therapy, where he is hoisted onto a trampoline to bounce, to feel feedback from movement in his limbs so that he recognises they are there.

Instead of computer programming, he goes to the dark room and uses ‘eye gaze’ technology to learn about cause and effect.

Instead of sitting in a classroom chair, he uses specialist seating and a standing frame to ensure his joints stay healthy, despite his inability to weight bear.

Orange can only do these things because he is in the right special school, with specialist facilities and specialist teachers to make it possible.

They also make it possible for all the children to do normal things that wouldn’t be possible in a mainstream school.

Like school plays. Every child in the school has a part, even if they have to be wheeled onto the stage on a bed because they have extreme medical or physical needs.

Like music and art. Even the children that cannot use their hands independently are helped physically to make music, to paint and do craft.

Like having lunch. Orange goes to the school canteen for his lunch just like any other child. His school provides a specialist allergy free, mashed menu for him that he is spoon fed carefully by an assistant. Some of the children are tube fed, which the onsite nursing team take charge of.

Like school trips. All the children can take part, because there is specialist transport and enough specially trained assistants to take care of the children’s needs. Orange has enjoyed trips to the theatre, to a specialist music studio, and to a sports centre to take part in team sport.

And his personal care and medical needs are catered for in a way that would be impossible in a mainstream school.

Every room is fitted with ceiling track hoists so the children can be lifted.

Every classroom has changing facilities for the children who are unable to use the loo.

Every child has the support of the on-site nurses. For us, we know that he is safe and in experienced hands if he has a seizure at school.

Without a special school like this, Orange would not be able to go to school at all. Which is the increasing reality for growing numbers of children with SEND.

There are simply not enough special school places. And it’s a smoke and mirrors bunfight of assessments, legal letters and negotiations to secure one of the few that are available.

For Orange it took 18 months.

18 months to secure a place at the one school within a 60 mile radius that could cater for his needs.

During that time we were told by various people in the local authority that ‘there were no places at the school’, that ‘they don’t take Cornish children’, that ‘we would never get a place’, and that ‘it would be impossible’.

We were told we were setting out to achieve the impossible by the very people employed to help us.

Were it not for help from the special education charity IPSEA, encouragement and support from wisened parents who have trodden this path ahead of us, legal guidance from a specialist solicitor and sheer bloody minded determination we might never have got there.

The day we got the call to say Orange had a place at the school, the three of us – me, my husband and my mum – fell into each other in tears of sheer relief.

Few families come through the experience of securing a special school place or an Education, Health and Social Care Plan for their child unscathed. There is huge financial and emotional cost.

Many of them never get there. Figures from the BBC this week show there has been a 64% increase in families in England resorting to home education because they feel so badly let down by the system they are trying to do it alone.

That’s why the BBC is running a special feature all week on SEND.

You can follow the coverage on BBC Breakfast, Radio 4 and Radio 5 Live every morning this week to hear about how the system needs to change and what you can do to help, by lobbying your MP and your local authority for change.

Follow #BBCsend on Twitter to join the conversation.