The Tale of the Token

We took the kids to junior parkrun on Sunday morning. It meant being up and out early, but the sense of satisfaction gained from having undertaken a family activity by 10am on a weekend morning is immense. Max likes running the 2km race, though is perhaps lacking some of the competitive edge of other participants, and since we got an all-terrain buggy for Ben one of us can jog alongside Max while pushing Ben, which they both love. Molly tolerates waiting around until she can go to the playground nearby.

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We can’t fit Ben in his normal wheelchair plus his buggy plus the rest of us in one car so we go in two cars and move Ben from the wheelchair to the buggy at the side of the road. We’ve done this a couple of times, and as usual last Sunday we were cutting it fine with timing so arrived as the group were warming up, pleased that it hadn’t started yet. Last weekend it was misty and atmospheric but not too cold. Parkrun is an amazing idea – free communal running, open to everyone, and the junior parkrun is just a slightly shortened, slightly calmer, 2km version of the 5k adult run.

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Ben was a bit grumpy as we arrived but we thought we’d carry on and see if he came around to this running idea like he has before. James did the pushing on Sunday and Molly and I waited at the start line, cheering them on as they ran past us at the halfway mark. I could see Ben had perked up. As they came towards the end Ben was smiling and we followed them as Max sprinted to the line. As with all parkruns they had set up a funnel and each runner is clicked in as they cross the finish line and then handed a token as they leave which corresponds to their race time. If you have registered online you have a barcode which you can get scanned with your token and then your time will be recorded online. You can then keep track of how many runs you have done, and what your times have been.

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As Max sprinted across the line he was clicked through and then handed a token, and James and Ben followed shortly behind but were not clicked in and so not given a token. James asked for one for Ben but by then the next runner had been clicked through and so it was too late. He continued forward to allow other runners through. As Molly and I caught up with them, James told me that Ben had high-fived one of the organisers as they’d been running, which is a big deal because Ben can’t easily control his arm, and we congratulated him while Max collapsed on a bench and demanded water.

It felt like a shame that Ben hadn’t been given a token like Max. It’s pretty hard to find activities that both boys like doing at the same time, and with the help of an all-terrain buggy and an able parent to push, this is something they can do together. When the boys do things together we try to treat the same, and Ben not being given a token did not feel like treating them equally. As James and I talked about it an organiser came up to ask if everything was okay.

I said it felt wrong that Ben hadn’t been clicked in so given a token and the organiser said that they didn’t give tokens to participants that were pushed over the finish line – children needed to run in order to be registered. He said he hoped I wasn’t disappointed, but I was incredibly disappointed – I had perceived parkrun to be inclusive and welcoming, and refusing to give a token to a disabled child who had done the full 2km run, albeit pushed, did not feel inclusive. They hadn’t come across this situation before, he told me that he’d been at lots of different junior parkruns before and had never seen a disabled child participating so they would need to ask head office for guidance. In the absence of direct instructions I suggested they could have erred on the side of inclusion, which would be to give him a token. I didn’t see how refusing to acknowledge him could be seen as anything but exclusion. I said I didn’t see what the risk was – what’s the danger in giving Ben a token and us being able to see his time? It felt like the person at the finish line had looked at Ben, saw he was disabled, and dismissed him.

It was a small thing but it slightly took the shine off an otherwise fun run. We had wondered how inclusive an event it was when we’d taken Ben previously and mentioned to an organiser that we would push him over the finish line. Their immediate response had been that no adult was allowed over the official finish line, and therefore Ben couldn’t cross it either. When James had pushed back, they had agreed he could cross it but it hadn’t been the accommodating response we have generally become accustomed to. Ben hadn’t been given a token that time but we hadn’t noticed.

I don’t want this to be about this particular organiser of this particular parkrun. In this case the organiser took my email address and contacted me later that day to say that he had found guidance which said it was fine for Ben to participate and to cross the finish line and be given a token. He asked that I register Ben online and we make ourselves known to the organiser at the beginning of the run, and that should ensure we have no problems in future. He dealt with the follow up promptly and effectively.

I do want to make this about how people respond when presented with a disabled person unexpectedly. Parkrun apparently has a policy of not letting parents push buggies over the finish lines at junior parkruns, presumably to stop overzealous keen-bean runner parents overshadowing six year olds or running them over. They don’t want adults crossing the finish line because it’s all about the kids at junior parkrun. Fair enough. But a nine year old disabled child being pushed in a specialist buggy is different. In this case, the people confronted with this difference reverted to the only similar rule they could think of which dictated that Ben should be excluded from the finish line of the run. When challenged, they said they didn’t have specific guidance and so they couldn’t, wouldn’t, give him a token because he can’t run.

This isn’t about the token – I’m not even sure Ben cared that much about the token – it’s an exemplar about what some people do when faced with an unfamiliar situation. Rather than thinking ‘oh, how can we include this person’, they think, ‘oh, he can’t run, so we won’t include him’.

We all find it difficult to be confronted with unfamiliar situations, especially under pressure, especially at 9.20am on a chilly Sunday morning. We are all raised in a society that sees kids who run as the norm. We are all influenced by a society that sees disability as difficult and we can’t help but take this message on board however much we (I) try to unlearn it. But let’s just all try to be the person who errs on the side of including, adapting and being friendly. Let’s not assume that if we don’t know what to do, the best thing is to is say no, exclude and ignore. And then try and justify it when challenged, concentrating on the really specific act of running rather than an overriding ethos of parkruns being ‘for everyone’ (see parkrun website).

Let’s all try to be the person who would just hand over a token to a nine year old boy who had just done a high five and participated in a 2km run.

Let’s keep the fun run mood cheerful and not sour the morning of a family who are really proud of themselves for making it out of the house before 9am on a Sunday morning.

Don’t treat my sons totally differently because one of them can run and the other can’t. People who can’t run can still take part in a run.

Don’t make me say the word ‘token’ ever again.

JUST BE THE PERSON WHO WOULD HAND OVER A FRICKING TOKEN.

(Photos below from the playground, post-run. Obviously it’s another playground where there’s nothing for Ben to do, but let’s not get into that now.)

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‘My Brudder is Bisabled’

This is an elaboration on an Instagram post from May. You can follow me on Instagram for cute photos of my kids and occasional thoughts @jessmox

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Molly helped me as I was putting Ben’s AFOs on one morning (AFO: ankle-foot orthosis – a custom made plastic splint to support the foot and ankle and keep them straight) by picking them up off the floor each time Ben kicked them off. As she climbed back up, she asked why Ben was kicking her in the face? We had a chat about Ben being disabled and I told her that her brain is in her head and it tells her legs how to move, and the messages between Ben’s brain and legs get confused. She’s 3. She listened and moved on.

I think so much of the cause of people feeling disability is unfortunate, bad or alien is because they don’t have the language to discuss it. If adults don’t use straightforward language to talk about disability with kids, and rather refuse to discuss it or use opaque, unfamiliar words, it reinforces the idea that there is something to be scared of or intimidated by. They get the impression there is something awkward that parents don’t want to discuss. Kids are never too young to be given the words to describe different kinds of people. These conversations can be just as cute as any others: ‘my brudder is bisabled!’

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I don’t pretend to speak for everyone on this issue. The rich variety of humans means people like to be called different things, but disabled is a descriptive term not a slur, and it is the most appropriate word to describe Ben along with boy, child, white, male and awesome. Disabled is a political term used to describe people who are disadvantaged and excluded because of their impairments.

Other people would like to be called other things, or parents would like their children to be called something else. I have friends with children with learning difficulties who would describe their children as having special needs. Some adults would not like to be described as having ‘special needs’ since they would say their needs aren’t special, they are specific.

I have read pieces by disabled people talking about how horrible it is to be stared at, and other pieces saying parents should never tell a child to look away from a disabled person – that this compounds a sense that there is something to be embarrassed about. I know that having a child who points and stares at someone, possible saying something deeply uncomfortable very loudly, is awkward. It can be embarrassing. I also know that having a child who is stared and pointed at can be painful.

But most people don’t take offence at children. Parents are often embarrassed because they realise they don’t know what the right thing to say is and they know they are unprepared for this discussion and perhaps are realising how little they have taught their children about disability and inclusion. Children are often pointing out difference and asking straightforward questions which can be quickly and easily answered.

If you have tried to educate yourself in the terminology of disability and taken time to hear disabled people’s stories you are likely to be less intimidated by getting language wrong. The best way of dealing with all of this is to ask people, or parents, what words they would like to use. You don’t need to know the correct word to describe someone to say hello to them.

I have explained to many children that Ben is disabled – that his body works differently and he cannot always control it. I have answered questions about why I am connecting a tube to his stomach and pushing water through a syringe, or why Ben is dribbling, and how his eyegaze computer works. When children ask these questions their parents often look panicked, but kids are inquisitive and I am happy to explain all of these things because none of it is problematic. It’s all really quite straightforward. A lot of it is technologically amazing.

Molly had a friend come to play today and she showed her some teddies. One of them has a gastrostomy button like Ben. ‘This teddy is disabled’, she said as she showed her friend, ‘and this one is a monkey.’

There’s nothing to be scared of. If in doubt, smile and be kind. Let’s raise our kids right.

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Playscheme

We survived the summer holidays! Nothing brings home the fact you have three children like having them all at home for six weeks . It is inevitably chaotic and puts all other meaningful activity on the backburner, but it’s also fun. We don’t all have to be up and out first thing in the morning, remembering school forms and PE kits. We can go to new places and hang around in the garden.

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The secret to communal happiness for us (me) is to have some structured activities, ideally not involving me, lined up between the museum outings and home-based craft projects. We are fortunate that Ben’s school runs a two week playscheme in the summer, and even more fortunate that we have funding for him to attend for one of those weeks. We pay for him to go for a second week.

Running a playscheme for kids like Ben is not straightforward – you need a suitable building, loads of staff with the right expertise. They are expensive because the ratio of staff to children is high, which means either schools or councils have to subsidise them or they are prohibitively expensive for parents. As a parent, it is difficult to find any holiday activities for our disabled child where we feel confident leaving him in a new place with unfamiliar people. I will only send Ben to this playscheme because it is at his school, staffed by people who work there so know him well – these are people who are used to feeding him through his tube and can communicate with him. It’s not the closest holiday scheme but it is the most appropriate.

So for the last few school holidays Ben has spent a week at this playscheme, which is exactly the kind of age appropriate, fun holiday activity I’m into. What I’m even more keen on is the typical experience of two brothers who are a couple of years apart in age being able to do the same holiday things, at the same time, and that is exactly what this playscheme offers. They welcome non-disabled siblings so this year Max went with Ben for four days.

Hurrah, we all shout! Except (and isn’t there always an ‘except’) we need to work out how to get them to and from a playscheme that is five miles from our house each day. Ben is theoretically provided with transport to do the morning journey for one week, but all of my emails to confirm this have gone unanswered and in the week before the playscheme, I still have no confirmation whether the bus is coming and if Max will be allowed on it. There are some mutterings about insurance (or lack of it) for Max. As always, I eventually call my contact, Ms A, at the private transport provider who are sub-contracted by our local council to take Ben to and from school during the term. She works her magic, and calls me back the following day to say she has confirmed the crew that usually take Ben to school will be there on Monday morning, ready to take Max and Ben.

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I cannot overplay the value of Ms A. After weeks of me emailing and calling social services and the school transport service (as I do in the weeks leading up to every playscheme) and getting precisely nowhere, she smooths the path and makes it work with a driver and escort who are familiar to Ben, and with enthusiasm for Max joining them. People like Ms A are the ones who brighten my days.

And so off they went! Ben went on his own some days, and Max joined him on others. They swam in the hydrotherapy pool and did some DJing. They made spiderman masks and puzzles.

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One day I collected them and a young woman was accompanying the boys down the corridor towards me. I could see they were relaxed and happy. She introduced herself and then, in a low voice so Max couldn’t clearly hear, said what a great brother he was. That he’d been friendly to everyone and helpful to Ben, that he’d made some funny jokes. She said her sister had gone to the school and that was how she had got into helping at playscheme. She seemed like exactly the kind of person I want my kids to hang out with.

This is unusual – it is not standard to have access to a playscheme where you feel really confident people understand and can care for your child, where they will be happy and safe. It is rare for non-disabled siblings to be allowed to join in with these kinds of activities. It is unusual to get funding for a week which includes help with transport to get them there. In fact, in a stunning display of bureaucratic madness, a classmate and friend of Ben’s went to the same playscheme each day but for some unfathomable reason was not allowed to travel on the bus with him. Ben’s bus went past the end of his road each morning without being allowed to pick him up, despite there being room. It was the same bus and crew that normally picks him up for school every morning. I despair.

After two weeks of Max and Ben spending time doing all of the fun the playscheme had to offer, we were ready to spend more time at home. I geared up to organise trips. We did loads of interesting things, but I worked hard. It takes thought and planning to find activities that work for a disabled eight year old, a six and a two year old. Holidays are fun but intense, which is exactly why a playscheme like ours is so valuable.

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There is a temptation to see such playschemes as a luxury but there is literally no other holiday scheme, club or session that Ben can go to without me or a carer. It is entirely appropriate for an eight year old to spend parts of his holiday without his mum, and to have the opportunity to do different things. It’s a crucial part of growing up.

From my perspective it’s brilliant. Ben said that he enjoyed it, and Max asked if he can go every day with Ben next year. I hope so, my boy, I hope so.

 

 

A Weekend Away

We went away for the weekend in June to the Calvert Trust, an activity centre in Devon. James, Ben, Max and I spent the weekend being the kind of people you see in adverts for happy families. We canoed, cycled, abseiled and swam.

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The Calvert Trust is fully adapted for people with disabilities to be able to do all of the activities on offer. I think of it as Centre Parcs crossed with a youth hostel in a utopian inclusive world.

James and I took Ben there three years ago. Then, we’d had a good time and Ben had had some extraordinary experiences. It was the first time he had been down a zip wire, or canoeing, and he had liked those things, but he hadn’t enjoyed everything. He’d struggled with the unfamiliarity of it all and the amount of waiting involved in being part of a group. In addition to preparing all of his meals in a bathroom, and getting up with him during the night, James and I were also trying to entertain him between and during the activities. It was a worthwhile but utterly exhausting weekend for all of us. I wrote a blog at the time which is here.

This time we took a night carer with us. And Max.  And realistic expectations.

The combination of Ben being older and Max’s boundless enthusiasm meant we had a really good time. It was still tiring, but the kind of tiring that comes of having had a fun day with kids who have enjoyed themselves. We went canoeing with Ben sitting in a special seat. We went cycling on special bikes which was marvellous (apart from the moment when Max careered off into the biggest patch of stinging nettles in Devon). We connected Ben to a rope and dropped him from a perilous height, and then sent him down a zip wire.

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As Ben gets older it becomes hard for us to help him to take risks, to really feel a sense of danger and the physical rush of being thrown or falling, which he has always enjoyed. We always tell people he likes speed – when he goes ice skating we encourage the professionals to take him round as fast as they can. When he was smaller we could easily throw him in the air or push him hard on a swing and he loved it. It feels good to give him the opportunity to be dropped from height in a terrifying way – to hear him shriek and then laugh. Just because you’re disabled doesn’t mean you should be mollycoddled, gently pushed over surfaces with small changes in gradient for the rest of your life.

It wasn’t all wholesome fun. We still had to entertain Ben and cajole him into wearing a helmet. He spent some time watching an ipad while others were doing activities he’d made clear he wasn’t interested in. He and I went abseiling which he hated and it made him cry. I took him back to the room while Max went climbing because Ben was totally over physical activities by that point in the day.

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But really, that’s fine. It was fun! It was lovely to have a weekend of just me, James and two kids (Molly was at home with family). Away from the activities, we spent more time together as four than we have done for years. The comparison to our previous trip, when Ben was younger and less happy, was stark.

It was one of those trips when Max makes everything more fun. Ben is often happier when he is around and vice versa. New experiences don’t feel as high stakes when you have two children doing them – if Ben can’t cope with it and has to bail, Max will probably still have fun so it feels worth the effort or vice versa again. And it’s hard not to enjoy yourself when you have a six year old telling you that what you are doing is fun, awesome, and brilliant repeatedly, before, during and after each thing.

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This visit it happened that ours were the only children there and the other groups were of adults with various impairments, some visibly physical, some not. Max made friends with some of the other guests, playing table football with them and asking them about their days. The kids stayed up late to watch live music, though we all refrained from the disco. I felt so strongly how idealistic a place it is – somewhere where everyone can do the same activities and eat in the same room, regardless of impairment. No-one needs to explain their disability. Conversations are about what people’s access needs are rather than what they can’t do. No-one stares. It’s how the world should be and we’re so fortunate to get to experience that if only for a weekend.

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‘More disabled’

You should all listen to a podcast called Distraction Pieces with Scroobius Pip where he interviews Jess Thom (link here). They are two thoughtful, interesting, amusing people talking about Jess’s work and life. This is in itself fascinating, but the podcast is also a glorious auditory celebration of difference, as Thom has Tourette Syndrome and Scoobius Pip has a stammer.

I found that when I first started listening I was really aware of their particular styles of speech but by the end (and it’s over an hour long) I hardly noticed. Thom talks about how her family and best friends barely notice her verbal tics – they are so familiar with them and her that they unconsciously screen them out as they listen to what she’s saying. I could feel myself doing this as I listened.

Isn’t that the way… Something new and unfamiliar draws your attention but given enough exposure and time your brain will accommodate it. One’s perception of another persons characteristics is going to depend on your familiarity with them (or with disabled people in general), and on your own preconceptions. I notice this with Ben. People meeting him for the first time can be struck by his disability, by his wheelchair, and sometimes can’t quite get past that to see a boy. We are so familiar with his body now.

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Apart from good discussions about the intersection of creativity and inclusivity, Thom also talks about the social model of disability (the idea people are disabled by society and their environment rather than their own impairments – I talk a bit about it here), making the point that she feels more or less disabled depending on the context. In an environment where she faces steps (she uses a wheelchair) or where her verbal and physical tics are not welcome, she will feel more disabled than somewhere where these needs are well accommodated.

This isn’t the first time I have heard these concepts, but each time I hear them explained eloquently I have an ‘Aha!’ moment and I hope everyone else does too. It requires a flip of mind to realise that the step is the problem, not the wheelchair. And it requires a degree of nuance to perceive disability as a constantly shifting scale that depends on the day, the activity, the environment, the level of support rather than an incontrovertible fact.

I find myself more aware of Ben’s disability when we are somewhere where he is the exception, particularly somewhere where the doors are a bit small, the spaces between the tables narrow, and we have to make an almighty fuss just to get him inside. Or in a theatre where it’s not clear that people are happy with Ben’s noises and his creaking wheelchair. In these contexts we, and the people we are squeezing past, become hyperaware of his disability.

At the other end of the spectrum, our house is where Ben is least disabled. I am so familiar with his body I largely don’t notice unpredictable movements when I look at him and will often only really notice noises that are communicative. At home he can, with help, go everywhere and do what he needs and wants to do. He can move around with his siblings, visit his parents in bed, be part of the action or somewhere quiet. He can have a bath every night. We can care for him easily and facilitate the things he enjoys doing. The house works with us, it encourages family life and visitors.

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It is possible to appreciate all of these advantages, and the privilege of having been able to make this house ours, because we have lived in many houses, visited many pools and cafes and houses that worked against us in small and big ways.

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The scale from ‘less disabled’ to ‘more disabled’ is not linear, and does not correlate with ‘better’ to ‘worse’. When I say Ben is ‘least disabled’ in our house, I do not mean that to be ‘more disabled’ is negative – because I do not believe that to be disabled is bad. “Disabled” is not a value judgement, it’s a description or an identity. When I describe Ben as least disabled in our house I mean that this is the environment in which there are least barriers to him doing what he wants to do, being who he wants to be, going where he wants to go (or where I think he should go, since I am his mother). This is thinking based on the ‘social model’ which Jess Thom refers to in the podcast.

So go and listen to the podcast. Maybe it will challenge your preconceptions about what people on podcasts should sound like. Maybe you will be inspired by Jess Thom’s creative work. Maybe it will expand your understanding of disability a little. I guarantee you’ll learn something, and laugh.

 

 

 

The legacy of the Paralympics

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Occasionally we get a glimpse into how the world could be. A world where the environment is not disabling. It’s like the social model of disability come to life. Do you know what the social model of disability is? If not, you should. It’s one of those sleights of hand, or thought, where you are told something which you immediately know to be true and you can’t believe you didn’t realise it before. The social model sets out the idea that disability itself isn’t the problem, and often isn’t itself a problem at all, but it is our society and environment which disables people; that sees disabled people as in need of fixing, and of their physical requirements as some kind of inconvenience.

Once you have your head around it, you realise disability is as much a social and environmental construct as a personal physical issue. Places are inaccessible so disabled people can’t visit them, or at least not without loads of planning and fuss. It isn’t their disability that means they can’t go to the theatre, get on the train or visit the stadium, it’s the physical environment. See?

As much as I like to go around lecturing people on the social model of disability, the reality is that day-to-day, we are forced to accept that Ben can’t go everywhere. Then occasionally we go somewhere and we realise what a total pain in the arse most big trips are for wheelchair users, and how incredibly easy and convenient these things could be once someone has given it some thought. If you too would like to spend some time in this utopian dream then get yourselves to the Queen Elizabeth Olympic Park and the stadium therein.

The Olympics and Paralympics in 2012 were a seminal moment for me. I love the Olympics at the best of times, but to have it in my home city was so exciting. Max was two months old and I was able to spend hours feeding him, sitting on the sofa, watching athletics. Ben and I went to watch kayaking. After all the predictions of doom, the Olympics were brilliant and incredibly popular. When it was then time for the Paralympics, the huge wave of enthusiasm continued and loads of parathletes became household names. There were people with various disabilities everywhere you looked, on TV and billboards. It felt like the Paralympics were an actual thing, with parity to the Olympics, rather than something tacked on the end.

So for me, as the mother of disabled two-year-old in 2012, this was hugely significant. It fed my soul: disability can be part of the main conversation, can be a thing of pride and success, rather than pitying looks and awkwardness. It was a glimpse into a world of inclusion.

And I wasn’t the only one. The legacy lives on. Max’s favourite athlete is Jonny Peacock, after his teachers showed them films of him running at school (nothing to do with us). Jonny Peacock first came to national prominence at London 2012.

The legacy of London 2012 is the Olympic Park, including the main stadium. In July it was the World Paraathletic Championships, and because my brother-in-law is way more organised than we are, we had tickets for all of us (except Molly, let’s not waste this on a one-year-old).

It was reminiscent of 2012 with hoards of cheerful volunteers everywhere around the park, offering high fives to everyone who walked past. One guy offered Ben a high five and then patiently waited while Ben slowly but surely lifted up his hand. The park is all subtle landscaping and shallow gradients, ramps down to canal paths and bridges across water.

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We enjoyed wheeling around, getting some free ice cream, and then going into the stadium where Ben’s ‘seat’ was just there, with a seat next to him for one of us (our other seats were in the row in front) and a great view. There was a Changing Places inside the stadium for us to use. We had parked nearby after being emailed a special pass by an incredibly cheerful person, and offered a lift in a wheelchair-accessible bus, but chose to walk.

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While we were watching the many sports in front of us, various other wheelchair users were sat around us with their families and friends. We all watched various paraathletes compete at the top of their field. Everyone cheered the winners, and the losers. Ben found the cheering a bit much – there’s a fine line for him between being really excited and it being too much. It was almost a bit too much for me, to be honest (weep alert). But that’s fine – we didn’t really expect him to watch three straight hours of athletics, but the stadium allowed him to give it a try. And the more we take him, the more he’ll be able to cope with the sensory explosion that is a stadium full of people cheering a British high jumper.

It was a good day for Ben (at least the bit before it got too much), but it was also a really good day for me, James and Max. It’s as important for us to see this kind of utopia where disability is not remarkable, and certainly not negative. Where it becomes clear that disability is an extremely broad spectrum, and to assume anything about someone’s level of disability, and therefore what they can achieve, is ridiculous. Where the particulars of someone’s disability are only relevant to what classification they compete in, not what needs to be fixed.

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We loved it all. It is unusual for us to go on an outing like this and not at some point discover some kind of problem with steps, or space for the wheelchair, or a lack of changing facilities. It was amazing for it all to be so easy, with so many enthusiastic volunteers, and such a feeling of inclusivity. Obviously on an average day, you might not have friendly people pointing you towards free ice cream, but you would still have the thoughtfully designed park and the stadium with easy wheelchair access. It can be done. It should be done.

 

Changing Places

As Ben gets older it seems to me that his life is a challenge of inclusion. As he get bigger and heavier, the places and buildings he can go and the types of transport he can use are restricted to those that are accessible by wheelchair. As the gap between his way of communicating and his talking peers widens, his ability to communicate with those around him becomes harder. Since he attends a special needs school, the amount of time he spends with non-disabled kids reduces.

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Ben is now pretty heavy, and quite long, and so it is becoming increasingly difficult for us to compensate for the lack of accessibility around us, a trend hastened by me injuring my back earlier this year. Where we would – without giving it a lot of thought – lift Ben, or his wheelchair, up to where he needed to be, or to see something otherwise obscured, we do so less often now. He is now often hoisted at home (a ceiling mounted hoist lifts him in a sling from, for example, his wheelchair to his bed) rather than us lifting him, something I find emotionally tricky.

Add in two other children, and the odd vomit or grumpy mood, and it can feel like it’s easier for us all to stay at home. We have to constantly nudge at the boundaries of what is expected of us and what we expect of ourselves – partly because it’s the right thing to do, partly because otherwise we all get unbelievably bored and tetchy.

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Last week we had left the car near Ben’s school in central London and so rather than one of us going to get it while the other stayed at home with kids, we went on a whole-family trip to retrieve it. Our local train station has lifts, as does a station reasonably close to his school. We looked like a small parade as we pushed a wheelchair and a buggy, carried a car seat, and Max dropped Lego on the floor. We walked through the City, past St Pauls Cathedral, got some lunch and hung out in a playground, and then drove home. It was fun! All of the kids liked being on the train, with each other. We liked doing it with all of them. We should do it more often!

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(Not possible to get a good photo of all of our kids)

But one of the things that really restricts where we can go as a family, and for how long, is whether there is a place to change Ben. I am going to attempt to talk about this clearly, without compromising Ben’s right to privacy.

Ben wears a pad which needs to be changed regularly. At home, we have ceiling hoists and two changing plinths (like a high padded bench) to do this on. We need to be able to lift him out of his wheelchair and lie him on a surface that will accommodate his full height. There is a name for places that have these facilities in public buildings: Changing Places. It’s not rocket science – they are places where people like Ben can get changed.

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(photo of one of the changing benches in our house, folded up)

Changing Places are not disabled toilets (though there are facilities that combine both functions). Disabled loos are just slightly larger-than-normal lavatories. We have used them, often, to change Ben in the absence of anywhere more suitable. This involves us laying the mat on the floor of the loo and lifting a heavy child down on to the mat. No-one wants to lie on the floor of a public toilet, so I think it’s obvious why this isn’t at all acceptable.

Changing Places are also not baby change facilities. Ben is the height of an average seven year old. He will not fit on a babychange unit (though we did this for years in the absence of anything more suitable).

Changing Places came about because a campaigning organisation with the same name has relentlessly lobbied businesses and public institutions to install appropriate facilities for disabled people. They have had some success – we can now plan our drive to Cornwall using their website, which means Ben can be changed appropriately in two service stations en route.

There are five Changing Places in central London. Clearly that’s better than none, which was the case a few years ago, but it makes it pretty unlikely that we are near one on any given outing. Which means our outings can only last a few hours. Can you imagine if you were told that, in the middle of a capital city, your nearest loo was over a mile away? I’ve had three kids and drink a lot of tea so that would spell absolute disaster for me.

And it’s not just public buildings or businesses that are failing here, it’s also hospitals. Our local hospital, where Ben has appointments at least four times a year, often more, has nowhere for Ben to be changed – awkward when waiting times mean we are there for two hours, and then will have an hour journey to take Ben to school. Nor indeed any ability to weigh him beyond me carrying him while standing on some scales and then the nurse subtracting my weight. I did this for years but it is no longer feasible. Nor do they have any way of measuring his height, and therefore calculating his BMI. This is pretty core information that would be really helpful in, say, a discussion with a gastroenterologist.

The social model of disability tells us that disabled people are disabled more by their environment than by their own condition. True inclusion means creating an environment that allows disabled people to participate in society: we took a family trip past St Pauls Cathedral because two stations have been adapted to allow Ben in his wheelchair to travel on the train. The length of our trip is then determined by whether we can change him. It’s not Ben’s disability that’s the problem – it’s the lack of appropriate facilities.

I have no particular desire to discuss the toileting habits of any of my children, but to not talk about what Ben, and kids and adults like him, need in order to be comfortable is to perpetuate the current situation which encourages exclusion. Providing appropriate facilities for disabled people is intrinsically entwined with avoiding isolation. It’s not a question of optional luxury, it’s an issue of basic dignity and social justice.

 

Where kids go to school

Max started school in September. It has made me think a lot about how we educate kids with disabilities.

Max’s school is a short walk away from home. It is a typical inner city state primary. Unremarkable for being similar to lots of other schools in London. Remarkable for being like many other schools which are also educating loads of kids with different needs, languages and backgrounds. I have been consistently impressed by how they have calmly settled thirty new kids into school and appear to be totally in control, while I struggle to keep three kids in any kind of order at home. Max has been learning at a furious pace – generally uncommunicative about his day, he’ll then slip in some comment about how to spell a word, or write something, or tell us about numbers in a way that shows he is really soaking up the things he is being taught.

One of the reasons I liked the school when we originally looked round was because it seemed to accommodate difference well – it has specialist provision for pupils with autism, it has a dyslexia centre. It has the kind of diversity of kids you would expect of an inner London school. I believe these things are important.

(Sidenote: a teaching assistant who we loved at Ben’s old school once told me she chose her non-disabled daughter’s school based on it having a lot of kids with special educational needs and being well known for inclusion. People like that make the world a bit brighter.)

Out of the classroom, and purely by chance, it turns out we live on the same road as two other kids in Max’s year and as we all troop up and down the hill every morning we have got to know each other. So within weeks of starting school Max was being invited over, and James and I were getting to know other parents. We bump into parents from the school in other local places and stop for a chat. Apart from this being really fun for Max, it has meant us being able to ask for favours; when Ben was ill, another mum collected Max for me and brought him home. This is new to us and it’s brilliantly straightforward.

I was worried about Max starting at a school where no-one knew Ben. Of course I was wrong to be concerned – within the first few weeks he had described his family with accompanying photos: ‘Me and Ben are lying in bed. Ben’s disabled and my bed isn’t that big so he sleeps downstairs’. Within the first half term the whole class had watched videos of Paralympic athletes and discussed overcoming adversity. As the teachers said at the time, the kids were too busy being impressed with Jonny Peacock’s speed to notice his lack of leg. Max has the confidence to explain Ben’s disability when he needs or wants to and he knows it isn’t negative or something to be self-conscious about, it just is.

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So far Max’s school is everything we hoped it would be. It is enabling the small ordinary interactions of living in a community. And in that respect, it is really – and unavoidably – different to Ben’s school experience.

Ben goes to school five miles away. It’s a really good school, and he’s there because we think it’s the best school for him right now. It takes about an hour each way for him to travel there and back every day. That is not that unusual – kids at Ben’s school come from all over London, in every direction.

James, a carer or I take and collect Ben two days a week. We chose to do that, so we see his classroom and his classmates, and have chats with his teachers and assistants. The other days he gets a school bus, like almost every other child in the school since. We rarely bump into other parents at the school.

Years ago, we looked at Max’s current school as a school for Ben. They were willing to consider it, but he would have been the only physically disabled child in the school and they had no track record of teaching a child like him. We decided it was better for Ben to go to school further away that had proven expertise in teaching children like Ben, in helping them to communicate and in maximising their potential.

We think this was the right decision for Ben, but it means we removed him from his local community. It is only through our efforts to engage him in local activities outside school (and my reliably local family) that he will have any sense of belonging in our little bit of south London. As I have written about before, life is all about human connections and this is more important, not less, for children with disability for whom interacting is challenging.

In some ways this is where Max comes in, as an unwitting but ever reliable social conduit. He invites his friends over, and then Ben is surrounded by boys playing with helicopters. Those boys, and their mums, dads, sisters and brothers,meet Ben and then recognise him in the street. They ask questions and get to know him. We take Ben to the Christmas Fair at Max’s school, where he meets Max’s teachers, other parents and kids, and really enjoys the Salvation Army brass band (obviously).

As ever, the path of inclusion never runs smooth, and Ben couldn’t meet Santa at the fair because the grotto was up two small flights of steps. But never mind – Max told Santa he needed a present for his brother, who is disabled, and wasn’t there, and Santa handed it over. They both got books about the Lego movie so we are all now clear about exactly why Vitruvius (not that one) is so amazing.

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There’s an argument to be made that it makes sense to group children who need specialist input together (and no-one appreciates the expertise of really specialist teachers, speech and language therapists and technologists more than me). That it makes sense to have a critical mass of similar-ish kids in a school together. It’s kind of obvious, and I have sympathy with this point of view, not least because kids like to be with their peers and for some children, perhaps being the sole physically disabled kid in a school is not necessarily that bolstering an environment. I think it works well for Ben to be somewhere with kids that communicate like him, and professionals experienced in teaching kids like him.

It’s not good enough that at 8am every morning hundreds of children with special educational needs are being bussed around the city, sitting in traffic jams while they try to get an education, driving past the local kids who could have been their friends. It’s not good enough that the families of the kids on the buses don’t get to know local parents. How otherwise are they supposed to forge the kind of friendships that are based on mutual understanding of how you feel at 9am having used the cross voice at least five times to ask your child to put on their shoes/not get run over by a motorbike/stop walking on that bit of wall, when you have run to school as you tried to keep up with your child scooting too fast down a hill, and are now wondering if someone is going to give you a medal for remembering the bookbag?

Obviously, calmly loading your older child on to a bus arriving at your house at 8.15am can sound attractive in comparison to the 9am chaos, but is it right? Is it really the right way to organise an education system? Is it fair for disabled kids? And are we really doing right by our non-disabled children?

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(Unconnected, cheerful picture)

A space rocket for Ben

In December Max and I went to Ben’s Christmas play at school. It wasn’t what you would call a traditional nativity play – each class did a segment around a theme and Ben’s bit was mainly based on the story of the three pigs and the big bad wolf! This is the second school Christmas play I have been to and they are always a triumph of logistics and imagination.

One of the older classes did a performance based on space, and were dressed as astronauts while singing ‘All About that Space’ to the tune of the Meghan Trainor song. This happens to be one of Max’s favourite songs and he was outraged, ‘It’s All About That BASS, not SPACE!’

Then, as we watched the kids Max said loudly, ‘Astronauts are not disabled.’

‘Um, right, don’t they look great?’ I said.

‘Astronauts cannot be in wheelchairs’, he said.

Luckily for me the next stage of the play involved chocolate coins being tossed in to the audience, so Max was distracted and I didn’t have to deal with the inclusion-disability-space conundrum immediately. But it stayed with me.

Max is as accepting of difference as you could hope a three year old to be. He’s a kid and they deal mainly in black and white and are hugely influenced by what they see around them. So in the same way that they might think women can’t be sea adventurers because there’s only one poxy female Octonaut on the TV programme, they think astronauts can’t be disabled because they haven’t seen one.

And of course they’re sort of right. It’s unlikely there will be a wheelchair-user visiting the International Space Station any time soon. But it’s also pretty unlikely that any of the children we know will grow up to be astronauts despite their aspirations but we don’t therefore tell them it’s impossible. Right now, they can pretend to be whoever they want to be.

The whole point of childhood is to have dreams and imagination, and the role of parents is to make the landscape of their aspirations as wide and ambitious as possible. That’s why we read fictional books. So in the same way that I don’t tell Max that he might not meet the stringent selection criteria for space travel, we also don’t tell Ben that he can’t be an astronaut because he’s disabled. In light of Max’s comments at the play, we spend quite a lot of time talking about how Max AND Ben can be astronauts. And Molly, come to that (depressingly lack of female astronaut portrayal also).

Part of this issue is about representation – kids needs to see disabled people (and girls, and women, and non-white people, etc etc) in their books and on TV, doing the same things that the able-bodied, white boy characters get to do. That’s what the Toy Like Me campaign is all about – calling on the toy industry to better represent disabled kids. There’s a lovely story about their campaign here

While we wait for the rest of the world to catch up with inclusion, I seized the opportunity for action provided by a massive pile of cardboard following delivery of a new sofa from Ikea and…

I now present to you: THE WHEELCHAIR-ACCESSIBLE ROCKET!

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My eight years of architectural education have not been wasted. It’s big enough for Ben to get in in his chair and still have room for his brother. Max has decorated it with stars and planets, it has a door to shut out the adults, and interior lighting courtesy of the pound shop. It’s a bit crude, not photogenic and an apostrophe has dropped off but the kids love it.

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James, Max and Ben have between them created an elaborate bedtime routine which involves turning all the lights off, Max climbing in to Ben’s bed, and then them playing with various light toys. For slightly obscure reasons, this is called a disco (though it involves no music). Therapists would call it Sensory Play.

We recently bought Ben a Buzz Lightyear toy to reward him for all his incredibly hard work using the eyegaze computer and along with the glow-in-the-dark stars and planets and watching clips of Tim Peake in space, the whole thing has become a bit space-themed. Now, the disco often starts with a little trip in to the rocket and a pretend voyage to the moon before the boys get in to bed.

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If the world won’t provide the imaginative horizons my kids need, we’ll have to create them ourselves.

‘To infinity, and beyond!’

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.