Extraordinary Bodies

Of the many things that change when you have kids, evening socialising is one of the most dramatic. James and I went from a pretty healthy social life to much rarer escapades, partly because it’s difficult finding people who we can train and trust to look after Ben, partly because babysitters are expensive. Going out is relatively unusual and totally lacking in any spontaneity.

I was therefore excited as we headed to Dulwich Park last Saturday night, for an open-air circus performance called Weighting organised by our local council. I knew it would involve disabled and non-disabled actors and performers, and we would sit on a blanket, and it wasn’t raining. I had high hopes.

I was not disappointed. In a week when the election result had not been what I had hoped for and I’d read a report about Ben that had been unusually pessimistic, this was the antidote to any and all negativity.

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The performance centred around a bridge which separated worlds, and upon which incredible acrobatics were performed. There was brilliant music, and a storyline about a father’s fear of letting his daughters out in to the world. The performers were lit by the sun setting behind us, and the audience was full of every (dis/)ability, race, age and gender. I was loving it.

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And then the Father in the show, who had a physical disability which made it difficult for him to walk and who I suspected might have cerebral palsy, started making his way on to the bridge amidst a storyline of him accepting his family must go out in to the world. He got most of the way up the bridge, slowly and carefully, and then leapt off the edge. Attached to a harness, he swung up and down suspended metres from the ground and looked so completely free, and it was so clear that he was enjoying himself, and IT WAS AMAZING. I did a lot of crying.

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Then the community choir started, signing along with the lyrics they were singing, and a children’s choir joined them. This did not help my tears dry up.

Both in its preparation and its storyline, this was a show about people, some of whom happen to have disabilities. About the part of London we live in which is diverse in every way. It was about hope, and not letting fear take over, and love, and joy.

The theatre company Extraordinary Bodies celebrates every body, disabled or not, and turns the very fact of its inclusiveness in to its greatest asset. From the sign language interpreter dancing while signing, to the council subsidising such an inspirational piece of theatre so it was free to all, it was an extraordinary performance.

At a time when it feels like disabled people are taking the brunt of austerity in countless ways, Weighting tells us what we need to remember. Let’s regard everyone as extraordinary, help each other, come together and find joy where we can.

Sending Ben down a zipwire

Over the Easter holidays we took Ben away for an activity weekend. We went to Istanbul for a long weekend with Max in March, so now it was Ben’s turn to get uninterrupted time with his parents.

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I did not grow up with activity holidays. My family holidays involved weeks in the British countryside going on long walks, or staying on a smallholding in Spain and swimming in a pond full of frogs. Our dad would occasionally take us to the local swimming pool but we were more likely to be taken round Ronda bullring for the twentieth time than to be put in a canoe. Our meals involved omelettes and family arguments. Not once did we stay anywhere fully catered.

The Calvert Trust Exmoor enables people with various disabilities to experience outdoor activities that might be complicated or impossible otherwise. We had heard great things about it, but I was a bit nervous. Mainly about how Ben would feel about it all, but also because activity centres remind me of school trips. All of the schedules and rules and mealtimes make me feel like I’m 11 years old again, and when we arrived I actually felt a bit homesick, even though I was there with my husband and child, and I’m an adult with a car that I can drive away if I really want to. I had a small weep about leaving Max behind, and then cracked in to the red wine.

We were there for a long weekend. And what a weekend it was – undoubtedly one of the most intense of recent memory.

It’s quite hard to summarise how it went. It could be written one of two ways:

  1. Brilliant adventure! New experiences!

We were told our timetable when we arrived. We were worried about how Ben would deal with any of the activities, but particularly the canoe trip – it would clearly mean an extended period of time with no ipad or books or distraction beyond calm water. And he wouldn’t be able to sit in a supportive chair like normal. What were we going to do when he flipped out, in the middle of a lake on a boat we were sharing with other people?

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In fact, Ben was great. He was patient as we got ready for the trip, sat perfectly cross-legged in the boat and lasted almost and hour and a half before he got bored.

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The next day he was attached to the ceiling of a sports hall in a harness and swung around. As far as we are aware that was the first time he’d done that too.

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Then in the afternoon, we pushed him down a zipwire at high speed. Twice. He reacted to this extreme sport by closing his eyes for the entire thing and giving us a wry smile. He looked more relaxed than ever.

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On both days he went swimming and hung out in the Jacuzzi, where he was relaxed and happy. We walked round a lake, sat by a fire, and read a lot of stories.

Our instructor was friendly and accommodating. He was skilled and experienced so knew how Ben could be supported to do each activity, and quickly worked out if Ben was getting impatient so made sure he went first when possible. He fits in to the category of people we come across pretty often who specialise in maximising the lives of disabled children and do it really well.

In the two days of activities, Ben took part in AND ENJOYED canoeing, swinging from a ceiling and zooming down a zipwire. He had never done any of these things before. If we achieved just one of those things in a normal weekend we would be inordinately pleased with ourselves. We’d spend the rest of the day watching the Paddington Bear film and congratulating ourselves on going canoeing. Canoeing!

  1. Really, extraordinarily hard work

Between all of these amazing activities which Ben enjoyed, we were working incredibly hard to keep the show on the road. Ben was a bit tense almost all the time in such an unfamiliar environment. We were in a group for each activity so there was inevitably some waiting around for our turn. As the weekend went on, we found we couldn’t wait for longer than a couple of minutes before he was getting grumpy. It also became apparent that Ben hates wearing a helmet.

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James and I were working overtime to keep Ben chirpy in between the action. Our timetable was packed with way more stuff that we would usually do with him on one day. Through a combination of fractiousness and tiredness, he didn’t enjoy a forest walk, or a challenge course, or crate stacking. He cried often and whinged a lot. We didn’t even try abseiling – we just stayed in our room listening to audiobooks and napped.

Ben was almost the youngest child there (most of the visitors are adults) so it’s not surprising that he was a bit overwhelmed. I was a bit thrown at times!

Meanwhile, all of our meals were provided but that didn’t include Ben’s gastrostomy feeds, and we didn’t have a kitchen. So we were washing syringes and cleaning the blender in our en-suite bathroom, storing his food in a mini-fridge, preparing medicines on a windowsill. It worked, but nothing makes you appreciate your own kitchen like not being in it.

When I was thinking about visiting The Calvert Trust, a friend told me it was the only place she had ever been where disabled and able-bodied people were viewed equally. She said, if only the rest of the world were like The Calvert Trust it would be a much better place. And she is totally right – we have never been anywhere where people (including James and I) assume Ben will be able to take part in every activity, and someone will have thought carefully about exactly how to achieve that. It is inclusive – both in terms of people participating in activities, and because it brings together a group of disabled and non-disabled people to get to know each other, talk to one another and eat together.

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But… I didn’t anticipate that being in a place with lots of disabled people, would make me see Ben as more disabled, rather than less. Even in a group of disabled people, Ben is noticeably less able than most. That is what it is – he’s brilliant, and cute, and clever, but his body just doesn’t work very well.

So by the time we got back to London, James and I needed a holiday to recover from the holiday. But instead James went back to work that afternoon, we decided to move house next month, and embarked on a series of hospital appointments with Ben. We are glad we went, and will definitely go back, but let’s be under no illusions that it will be a restorative holiday!

Swimming (with update)

There aren’t that many activities that we can do with Ben where he is really participating, rather than spectating. Swimming is one of them.

It’s taken a while for Ben to warm up to swimming. Our local leisure centre, Peckham Pulse, has a brilliant hydrotherapy pool which we can use but at first he found the loud, echoey acoustics of the pool overwhelming (tears). Splashing was also stressful for him (tears). And all of the fuss of changing and unchanging on uncomfortable wooden benches (tears).

I wondered if it was a family thing – around the same time I was taking Max to eye-wateringly expensive baby swimming lessons where he’d scream every time the instructor came close, hated being put under the water, and tried to climb out every time we approached the side. I persevered because I thought it was important that he learnt some water survival skills. When James pointed out that hating being underwater and trying to escape from the swimming pool at every opportunity probably indicated Max had understood the basics, I stopped going.

We kept taking Ben swimming occasionally and if we could minimise all of the other factors, he enjoyed actually being in the water. We went to a few hydrotherapy sessions to get ideas about what we could do with him, and it turned out he loved being bounced up and down, and being spun round, and being held in the bubbles when the jets were turned on. On holiday, Ben discovered the joy of the hot tub.

The secret to enjoyable swimming for Ben is to try to avoid the noise and splashing of other swimmers, which essentially means avoiding too many neuro-typical kids. Taking Ben to Rafts & Rascals is not how anyone would voluntarily spend a Saturday morning. Since it’s a bit hard to monopolise the hydrotherapy pool at a huge leisure centre, we were thrilled to discover the Family Disability Swim Session at 11am on a Sunday morning. We didn’t make it as often as we would like, but when we did it was fantastic and something we could all enjoy as a family: the holy grail of weekend activities.

On a rainy bank holiday Monday in May we didn’t have anything planned so we thought about swimming. On the pool timetable it said there was a Disability Swim session 12-1.30pm. Perfect! I phoned to check that we can take kids to this… and was told, ‘Yes, that’s fine for your disabled child to swim’.

‘Oh, great, we’ll have our other child with us too. He’s 2.’

‘No, non-disabled children aren’t allowed in the pool at this time.’

I then had a conversation where the lady suggested that one of us could go in the pool with Ben from 12-1.30pm while the others waited outside. Then Max could go in the pool after 1.30pm while Ben waited outside. This was her ingenious solution to the problem of Ben not liking swimming with boisterous kids, and Max having the misfortune of not being disabled.

When I complained I was sent the following email:

Hi Jess

Hope your well

Just to let you know the group that hired our hydro pool at 11am on Sunday have pulled out due to low number so we have put the Family disabled swim back on (11am-12pm)

This session will start again on Sunday 8th June 11am to 12pm

Thanks in advance

Most of my points were ignored but good news that the Family Disability Swim Session, when disabled and non-disabled children are allowed to swim together, was reinstated on a Sunday! Except I just looked at the pool timetable and the session has now been moved to 8-9am on a Saturday morning. How incredibly convenient! Thanks! Apart from it taking superhuman organisation to get anyone out of the house at 7.30am on a Saturday, it takes over an hour to feed Ben so no family swimming for us.

Luckily Ben has been getting plenty of opportunity to swim at weekly pool sessions with his school. We were nervous about this when he approached the first afternoon last September – he had never been in a swimming pool without me or my husband, and we were hypervigilant of the handling/noise/splash/discomfort/tears issues. We were proved wrong; Ben took the whole thing in his stride and has loved every swim lesson since.

Or, mostly loved it.

No-one had anticipated Ben’s love for Rick, a teacher who accompanied them to swimming (and often taught Ben in the classroom). Rick would help get the kids changed and then leave to get changed himself, at which point Ben would burst in to heartrending sobs which could only be alleviated by Rick returning. The boy’s got favourites.

We’re going on holiday to a house with a hot tub in August so Ben will be able to get his fix of water. Maybe by September the clumsy officialdom at Peckham Pulse will have realised that disabled kids have non-disabled siblings and they might like to go swimming together.

UPDATE

The Family Disability swim session at Peckham Pulse has been reinstated on Sundays at 11am and we all went last weekend. It was brilliant – Ben was relaxed and totally in the zone. Meanwhile Max tolerated his armbands and learnt to float! There were at least four other families in the pool and it was a glorious mixture of disabled kids, their non-disabled siblings, mums and dads and we all loved it.

The downside is that Max has asked to go swimming ever since so I took him this week and he spent a considerable amount of time shouting at me:

Max: I want to be a fish.’

Me: ‘You can swim like a fish’

Max: ‘No. I WANT TO BE A FISH.’

Repeat. Repeat. Etc.

Barriers

In the early 1980s disabled people came together and redefined what they meant by disability:

‘Disability is the loss or limitation of the ability to take part in the normal life of the community, due to physical and social barriers’ (adopted by Disabled People’s International, Vancouver 1921)

They basically turned the whole thing on its head – rather than being defined by what they were told they were unable to do and what was wrong with them, they self-defined as being disabled by the fact that the world around them wouldn’t let them participate and be included in the way they would like, whether through, for example, physically inaccessible buildings or prejudiced attitudes.

This was a revelation to me and made me think differently about Ben and what he can do, and how we deal with it. It is connected to the theories of medical and social models of disability of which more here.

The problem with inaccessibility (of all kinds, physical and social) is that you become conditioned to it. Buildings are difficult to get Ben in to and so we start thinking it’s easier to stay at home, or only go to places we’ve been to before. People say insensitive things to me about Ben and I bring him up in conversation less often. For a multitude of reasons, Ben doesn’t make friendships with peers and doesn’t get invited to birthday parties so we get used to basing his birthdays around family (adults). Ben can’t go to the local school because the building doesn’t have a lift and they have no experience of physically disabled kids. So it goes on in tiny and massive ways until disabled people aren’t taking part in life around them in the way they could be if everyone made a little more effort.

The most frustrating thing about all of this is that it’s a predictably vicious circle – disabled children/people aren’t as visible or as involved in their local communities as they should be so they become withdrawn and isolated. They are then not visible so people think of them as different, and so it becomes harder for them to be involved, all the time being labelled as being dependent when integration would be the first step to them become less dependent. It’s a bit depressing.

It is important that the disability rights movement continues to fight for better access, more inclusion, more acceptance of difference, but I think the world also gets better by individual people doing kind things and being welcoming and understanding. It is impossible to overstate the significance of small acts of friendship.

In the middle of a long drive to Cornwall in April we stopped at a service station to give everyone some food and a break. I was sitting in the over-lit buffet restaurant on my own with Ben since Max had broken free to play on a massive plastic train, and was feeding him through his gastrostomy tube. I had noticed out of the corner of my eye an older couple looking at us – not in a mean way, just a curious glance, and thought nothing of it. I am totally used to looks, but have an amazing ability to filter them out (aside: a skill honed by being the only female architect on building sites in the Middle East). Before I spent every day putting liquids down a gastrostomy tube, I would have been mightily intrigued by a woman getting out a load of syringes and fiddling with her child’s tummy in the middle of a cafe. Ben was watching his ipad and happily oblivious.

The couple got up to leave and as they walked past us, the man said ‘Could we say hello?’.

‘Of course’, I said, ‘Hello! This is Sam.’

We had a brief chat about what Ben was watching, how he was, what his brother was up to, and they said they had seen Ben smiling from across the restaurant. Then we all wished each other a happy Easter, and said goodbye.

I would bet my new clogs that they have some personal experience of disability, but they didn’t mention it. They just made us both feel welcome and happy. I’ve thought about that couple at least once a week ever since because those kind of interactions are rare, and the world would be a better place if there were more of them.

P.S. Banana Man (as he was christened in my previous post) continues to earn his place in my heaven. Last week he gave Max a free chocolate bar to distract him from shouting in my ear while I was trying to pay for some milk. I then let Max eat the chocolate bar in the car because I’m a weak parent, which resulted in him bathing his entire car seat in melted chocolate, and me spending an evening dismantling the whole bloody thing to clean it. I preferred it when he stuck to bananas. And also I am a bit worried about his profit margin.

Circles/Bananas

I’ve been on a training course for the last year or so, learning to be an ally to Ben. I’ll come back to what ‘ally’ really means in this context, but one of the things we looked at is Circles of Friends (sometimes called Circles of Support).

My (superficial) understanding of this idea is that it is a process to intentionally help people make friends – for people who are finding it difficult to make and keep friends on their own, who are feeling isolated. The key principles are that no-one is paid to be in the Circle and it is based on asking the focus person what they want (not what other, even well-meaning, people think they want). It’s mainly used for teenagers and adults. In practice, it means a group of people who agree to meet regularly and assist someone to fulfill their dreams and ambitions.

It’s a way of concentrating attention on the ‘focus person’ and trying to look at what that person would like from their life and help make that happen within their local community – it could be ‘going to the pub’, or ‘moving house’ or anything inbetween. There’s an example in action here.

I found it fascinating but not that relevant to us right now. Ben is 4, surrounded by friendly people at school, nursery and home; we’re not at that stage yet.

Last week it was half term and Ben and I went to buy some avocados. I went in to pay, leaving Ben in his wheelchair just outside, and as I handed over the money I glanced at him and he gave me a massive grin. As I looked away, I thought I saw him smiling at a man who works in the shop who was organising the fruit. When I came out again, the man said hello to both of us, smiled at Ben and offered him a banana. We all smiled a bit more, said thank you, and off we went to return home.

We have history with Banana Man (as I’ve just decided to call him). Last month, Ben and I went to the same shop. It was after school and Ben was tired. As we arrived, I put Ben’s wheelchair near the fruit outside the shop and at that exact moment a dog, which was also being left outside while it’s companion did some shopping, started barking. Loudly and insistently. Ben has trouble managing his swallow with his breathing and if things take him by surprise he can lose control for a bit, which throws everything out of kilter. In this case, the shock of the dog barking (and barking, and barking) meant he started choking. I quickly wheeled him away from the shiny ripe fruit by which time he was vomiting. So I take him out of his wheelchair and we’re both hunched on the pavement, when soon-to-be Banana Man comes up with loads of tissues and a concerned expression, asking if he can help. Actually there’s nothing to be done – I clean up Ben with the donated tissues and we head home (without any milk). It was an unfortunate incident for both Ben and my tea addiction.

We have a 2 year old, Max, who is a bold, bolshy boy. He’s loud and cute and we rarely take him anywhere without someone commenting (in a nice way) on him, what he’s doing, what he’s good at, how funny he is. Small children are fantastic social conduits and people who normally wouldn’t interact become chatty with Max around. You can bet your house that if you walk to the shop with Max, someone will acknowledge him at some point. That happens a lot less with Ben – he’s physically passive, he doesn’t talk and interrupts people less. Maybe people notice his wheelchair more than him, or they’re too busy thinking about bananas to notice how beautiful he is.

The banana thing made me think that tiny incidents like this are our small, less formalised version of a Circle of Friends for Ben. He can’t currently make friendships easily so these small connections are important to us – Banana Man knows who Ben is, smiles and interacts with him, and makes us feel like we belong in our little community. He smiled, and Ben smiled back, and that’s where a sense of connection begins. Mr Banana might not realise it yet, but I’m now rather fond of him.

Ben held the banana all the way home (no mean feat for a boy with a tricky relationship with his hands) and was very pleased with the whole trip. I am thrilled that the cheapest shop in our local parade is the one Ben is forging links with – if he’d picked the shop next door we’d be bankrupted buying £5 loaves of sourdough in an effort to encourage friendship.