Limping through lockdown

It has now been over four and a half weeks of us being at home – at first in self-isolation because Molly was ill, then in the typical lockdown that everyone is doing. It has been over five weeks since I slipped on a small hill in a kids’ playground and broke three bones in my ankle. Tomorrow will mark exactly five weeks since I was wheeled into surgery, telling James I would see him in two hours, only to return five hours later with three metal plates and ten screws in my very swollen ankle.

I was discharged from hospital two days before Molly got ill and so our lockdown is inextricably linked with my ankle injury and my often clumsy attempts to manoeuvre myself around on crutches, bearing no weight on my left leg. Having a leg in a cast was not ideal preparation for having three children at home, all the time. Yet, when I was first in hospital the thing that upset me the most was being separated from my family. I was so lonely and all I wanted was to be in my own house with my children. So in some ways all my dreams came true!

Once I could leave my bed, my inability to move, carry or help has been difficult and it has felt like the worst timing because what we could do with now, more than anything, is two adults who can both look after our children. My incapacity meant James doing everything, for all of us, for weeks and it was a lot for him. More than once when I tried to be helpful and independent, I fell over. I have found it incredibly frustrating. I am unused to dependency and have found it hard to rely on nurses, my husband and my children for the most basic of my needs.

But in some ways I injured myself at the best possible moment. We had bumped into a friend in the playground just before I fell and so she distracted Max and Molly while I worked out how to get myself to A&E. I had delivered a massive work project the day before I injured myself so it has been okay that I haven’t worked for a month. James had returned from a work trip to Canada two days before I was admitted to hospital. I was discharged from hospital just before the pandemic took full hold, and my limited mobility is less of an issue since I’m barely allowed to leave my house.

We have bought me a one-legged scooter and so I can now prop my healing leg on it and potter around the house. I can cook, and carry things from one place to another without needing to pack them into my rucksack. I have made it out to the garden and have played an extremely amateur, ridiculous, game of seated volleyball with Max. I have been reaping all of the benefits of a house without steps, with doorways wide enough for a scooter, and a lift that takes me to my bedroom. I have been so grateful for the mobility aids that have allowed me to move around and increasingly parent my children. And yet I am so resentful that I can’t use my legs like I am used to. It’s been a surprise to find myself dependent on crutches and a scooter and I struggle to reconcile my long-standing belief that mobility aids are freeing, not confining, with feeling incredibly constrained, all of the time. I hope this is more a process of change management in my own mind than latent prejudice against disability, but it’s hard to fathom my own thoughts when I have only left the house twice in a month and we’re in the midst of a pandemic.

Because obviously the pandemic weighs heavily. When Molly was ill, we attempted to self-isolate her and Max from Ben, so after years of encouraging our children to touch, kiss and cuddle each other we had to stop Molly going near Ben in the house. It felt necessarily but wrong. Max stopped sleeping in the same room as Ben. We still had some carers coming to spend time with Ben, and we had to tell Molly and Max not to go downstairs when they were here. After years of encouraging an ease around Ben and his carers, we had to police everyone’s exposure to each other, spraying cleaning fluid in their wake. It was heart-breaking. I’m not sure how long it will take for us to undo our policing of touch.

As Molly entered her second full week of illness, it seemed like Ben was in a vulnerable category and we tried to work out what we would do if he got ill. We spoke to Ben’s lead consultant and he suggested a plan which made us feel reassured, but we were on tenterhooks every time Ben coughed or grimaced. Somehow he has so far remained unaffected, and now we are all healthy, touch wood. It now seems like Ben no longer officially counts as vulnerable, though who knows, and there is only so much we can do to keep him safe. We remain vigilant, nervous and concerned.

In the midst of all of this, I scoured the internet for guidance about how we should manage carers coming into the house. Not having carers was not an option given my inability to look after Ben and James needing to look after all five of us. I cannot push Ben’s wheelchair or move him between his chair and his bed. I can barely change him without wobbling perilously and can’t get to him in the night in any kind of timely fashion. So we came up with our own version of guidelines for how we would manage the risk, long before the government produced anything helpful.

I noticed news reports that told us, with a tone of reassurance, that many of the people who died had underlying health conditions. I knew that is how Ben would be described. I was relieved that children did not seem to be among the worst affected, but then there were reports of child deaths, and plenty of other people to still be worried about. When NICE published guidance setting out how access to critical care would be managed, I noticed that it was on the basis of frailty, and that according to their criteria Ben would be frail. I realised these criteria didn’t apply to children, and I was both relieved and still stricken, because Ben will one day be a disabled (apparently frail) adult, and we have friends who are disabled adults. I am still shocked that a formal, public document set out the ways in which a disabled person’s access to life-saving treatment would be considered rather than assumed. It was later edited to say the guidance should not be used with younger disabled people, but why did it take outrage to prompt that clarification? Of the many things I never imagined before COVID-19 appeared, I didn’t think I would ever worry whether my child would have to compete for medical attention and whether his disability would count against him if he did. 

I’ve barely articulated any of these thoughts because I am mainly aware of our luck. We are currently healthy, in a large house with a garden where we have time to appreciate the tulips. We have offers of supplies and the money to buy them. I have a husband to help, and subscriptions to streaming services. We have as much hope as anyone else does of home-schooling our children, albeit with the colossal pressure of being not only Ben’s teacher but also his physiotherapist, occupational therapist, speech and language therapist and support system. 

We could be in a much more difficult situation, and I know many are. We are okay – letting our kids watch marginally inappropriate films, making and eating too many cakes and wondering how to get any work done. We are more fortunate than many, yet each morning I remember that this crisis has laid bare an assumption that Ben’s life might be, if not now then in the future, a little bit less valuable than someone else’s and I just hope that we are going to weather this storm and then come out fighting, with strong ankles perhaps.

How to wee in space, or South Kensington

Do you know about Changing Places? Ben can’t use a standard accessible toilet so when are we are away from our house we need a Changing Place which is a room with a changing bench, a hoist and room for us and his wheelchair. Without a room like this, our options for visiting places are limited.

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Many of our favourite places to visit in London have taken it upon themselves to install Changing Places: Tate Modern, Barbican, Royal Festival Hall. They have just opened a new one at City Hall, and there’s one in Queen Elizabeth Olympic Park.

Yet other places have so far been apparently incapable of finding the space, funding or enthusiasm to install one. Between the Science Museum, the Natural History Museum and the Victoria and Albert Museum there are no facilities to cater to any of their more disabled visitors despite the thousands that must visit every year. The museums are next to each other in Kensington – it would be easy for disabled visitors to move from one museum to the other to find the facilities they need but according to the Changing Places map it is a barren wasteland.

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This means that when we visit one of these museums, which we do often, our day is determined by how long it is reasonable to stay out before we need to return home. It doesn’t matter how much fun we are having, how interested Ben is in nocturnal creatures or how much Max doesn’t want to leave Wonderlab. We have to leave and drive home because there is no toilet within two miles for Ben to use.

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Let’s just think for a second about using the loo, or rather not being able to use the loo. I’m a woman so I’m used to queueing, but I know there’s going to somewhere I can use pretty much everywhere. I drink a lot of tea and water, I’ve had three kids, I wee a lot. Just imagine not being able to go to the loo, restricting fluids and organising your whole day, life, around where there might be a loo. People like Ben have to tolerate a certain amount of discomfort to get to see more of a museum.

During the recent anniversary of the moon landings I read a fascinating Twitter thread about peeing in space. The author, a science fiction writer, points out that it is a common misconception that women couldn’t go into space initially because they lacked the technology for them to pee. Actually, the technology for anyone to pee in space was untested and initial space flights involved a lot of men weeing in their spacesuits and capsules smelling of poo. By the time women were going into space, NASA developed a solution for launch and spacewalks called the Maximum Absorbency Garment (MAG) which was, essentially, a large nappy or pad. Men used them too because they were more comfortable and involved less pee floating around the cabin.

It is super cool that the Science Museum is giving it’s disabled visitors a genuine space experience by leaving them to sit in a MAG while admiring a lunar module, but it would be better to have proper facilities. At the cutting edge of human endeavour, forty years ago, it seemed reasonable for astronauts to wear pads for long periods of time. On a Tuesday morning in the school holidays, in 2019, it does not seem reasonable. It appears that public institutions in central London don’t care enough about their disabled visitors to provide for them.

Presumably at the heart of this is people’s incapacity to imagine what they have not experienced. As a Continence Nurse said to me recently, ‘If I could persuade NHS managers to experience what my patients do, they might provide more for my patients and install Changing Places in hospitals’. Imagine the results we might have if MPs or Museum Directors got the full MAG experience.

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Over the last few months I contacted the South Kensington museums about this issue. The V&A and Natural History Museums told me they have hopeful plans to install Changing Places in 2020. In the meantime the Natural History Museum says it can provide a mobile Changing Place on request. That doesn’t allow for a great deal of spontaneity, as it means we need to plan trips sufficiently in advance, but it is a good interim solution. The Science Museum hasn’t yet responded.

The Changing Places campaign estimates there are quarter of a million people in the UK who have some kind of disability and cannot use a standard accessible toilet. Yet there is no requirement for public buildings, old or new, to install Changing Places.

Thousands of people are living their lives constrained or in discomfort due to a lack of loos they can use. Surely if we can get people into space we could provide a few more specialised loos on earth?

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‘This is Ben. He’s playing the iPad.’

About five years ago I did a BBC Radio 5 Live interview, which was indeed live, about Ben’s nativity play which we had been to the day before at his then school. The BBC had been filming the rehearsals for the play and interviewing parents before the final performance, and a lovely film featured on their website. It was also picked up by 5 Live and Ben’s school asked if I could be interviewed on air. I said I’d think about it and spoke to my husband, James, who said obviously I should do it – why wouldn’t I? And he was, of course, right.

Before talking directly to the presenter on air I had a conversation with the producer of the show who asked about nativity play. He was friendly, but it was clear the story they were looking or hoping for (similar to the website headline: ‘The parents who never expected to see their child in a nativity play’) was one of my surprise that my disabled child had taken part in a nativity play. Ideally I would talk about how amazed I was, that I had never expected this to happen because my child was, you know, disabled.

I gently pushed back and said the play had been amazing but not beyond what I had dreamt for my son, because the school was great so it was entirely within expectations that they’d do a Christmas performance. Then I tried to give them an alternative story (encouraged by James who has done substantially more media interviews) which worked. When I was put on air and talking to the presenter she asked about Ben’s progress at school and I told everyone that he’d read new words the week before which was a much better, feelgood, story. I wrote a blog about it at the time here.

I had never thought about nativity plays and been sad that Ben would never get to be in one. I’d never really thought about nativity plays at all – for either (at the time I had two) of my children. I don’t spend much time thinking about whether they will or won’t take part in these rites of passage. But if I had then I would have presumed that Ben’s excellent schools would make some version of it happen, and they have – we’ve been to a Christmas play every year since Ben started school. I wouldn’t say he has always enjoyed them, but they have happened.

Over the years Ben has got better at being able to take part in these kinds of performances without finding it all too overwhelmingly bright, loud, unexpected and unpredictable. His current school has an Awards Night every year where all of the pupils’ achievements are celebrated. There are some speeches and performances and each child goes up onto the stage to accept a certificate. The first time we went Ben hated most of it, but particularly the moment when he had to go up to the stage, and we wheeled him off the stage in tears straight to the car to drive home, leaving six members of our extended family clapping for children they were not related to. He gets overstimulated by the cacophony of music, clapping, lights, people and being the centre of attention. This kind of event doesn’t happen every day and therefore is hard to handle for him.

We didn’t go to the second awards night. We gave the third a try and didn’t invite other family; Ben’s crying that year wasn’t quite as loud but still heartfelt. This year we tried again and prepped thoroughly. We talked Ben through it for days before, agreed with him who would go onto the stage with him. As the ceremony started James read furiously from a poetry book and Ben allowed himself to be occasionally distracted. When it came to his class’s turn, James and Max wheeled him up to the side of the stage and delivered joke after joke to Ben.

I watched nervously from the audience as they came up to the stage and the headteacher handed Ben his certificate. I could see Ben was tense, already sweating from the stress of it all, but HE WAS NOT CRYING. He even managed a small hint of a smile. And then they wheeled off. Max appeared a few moment later demanding more sweets and when James and Ben returned to our seats we agreed we shouldn’t push our luck and beat a jubilant retreat to the car.

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So when, a week later, the school asked us whether Ben should take part in an evening music performance we were unsure. They reminded us that we had said no the year before. But now, fresh from the success of awards night, maybe we should give it a go? It’s a delicate balance with these things between it feeling wrong to force Ben to take part in events he hates and making him stretch his comfort zone so that he can discover that it’s broader than he thought. We said yes.

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On the day Ben’s teacher said they would take the kids to a rehearsal between the end of school and the performance so we just needed to turn up at the venue at 7pm. We had sent in his dinner that morning and they got him ready to go. We were so nervous we left home early and had time for an unusual Monday evening drink – just two parents having a semi-relaxed glass of wine before going to watch their son in a concert. It felt like a Thing that we hadn’t been involved in any of the preparation for this – we weren’t the ones getting him fed and changed and ready – we would just be spectators.

The performance was in a converted church and we took our seats looking down on the large area of floor which was the stage, where once there would have been an altar. Ben and his gang (five kids, five teachers/assistants because that’s how special needs schools roll) were at the side of the stage and Ben looked more relaxed than we had expected. The concert began and it was a mixture of folksongs played by professional musicians and pieces with children from other, mainstream, schools. We could see Ben getting more tense but his teacher was sitting right next to him and talked him through it.

When it came to Ben’s school’s turn they wheeled the children onto the stage as the compere/conductor explained that musicians from the London Symphony Orchestra had been visiting the school and had composed a piece with the pupils. He introduced each of the children and their instrument: ‘This is Ben. He is playing the ipad’. Ben had a trumpeter standing directly in front of him and when he touched the ipad with his hand the notes changed according to the pressure and direction of his touch. The trumpeter then played each phrase back, mimicking his ipad music, like a freeform duet. Other pupils played drums and buttons linked to recorded music. It was glorious.

Ben sat patiently at the side of the stage for the rest of the concert, listening to beautiful children’s choirs and enthusiastic drumming. At the end we collected him, thanking his teacher for the utterly brilliant way she had helped steward Ben’s emotions through the evening, and saying hello to the trumpeter who was chatting to Ben. We paused outside the church to collect ourselves and our belongings and people came up to Ben to say hello, to say well done. One lady bent down to his level and stage whispered, ‘Ben. That. Was. Fabulous.’ As we walked away, the evening warm and still light, a family coming the other way said, ‘Bye Ben, well done.’ We don’t know any of these people. None of them knew his name before his performance. It was amazing.

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I hadn’t imagined Ben would perform with LSO musicians, not because I’d thought he wouldn’t be able to do it because he’s disabled and would be sitting at home excluded from normal childhood opportunities (see BBC headline above), but because I didn’t know my children would have the opportunity to perform with LSO musicians at all. I would have been proud of any of them taking part in a ‘proper’ concert like this.

But particularly for Ben – it’s not that I’m amazed that he took part in these performances despite his disability; it’s that I’m so proud of him taking part in these performances because he’s disabled. Because he’s worked (working) hard to overcome all the reasons why things like this are sometimes overwhelming for him. I think it’s amazing that he has got to the point of being able to enjoy these opportunities despite finding it hard to cope with the noise, stress, unfamiliarity they involve. I love that the iPad was treated equally to the trumpet, and his disability incorporated, and that all the other parents and children remembered his name and came to say hello. It was one of THOSE moments which I’ll talk about when I’m old and dotty and reminiscing about how much joy my children brought me.

What to expect from grown-ups

I recently took Ben to a new place, for a new thing, which involved us swimming in a pool. It was a brilliant morning – the kind of pinch-me event that makes me so grateful that Ben has these opportunities, that I get to do this stuff with him.

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But accompanying the #blessed vibe, there was the cold, hard reality of needing to get Ben and me into our swimming costumes. We were at an unfamiliar school and there was a teaching assistant on hand to help get Ben and another child ready. As I got Ben onto the changing plinth, she said she would get Ben undressed while I got changed. This seemed sensible since I couldn’t really get naked in room full of strangers, so I left her to take Ben’s jumper and tshirt off while I popped next door. When I came back, I took over and continued to undress Ben. As I was putting some of his clothing in our bag, she started to undress Ben’s bottom half. I said I would do it but as I did, she continued to help. I repeated that I could do it.

She was being helpful. But it felt uncomfortable. I was there and happy to do all of it. We didn’t need help. Ben didn’t know her, and there is an intimacy to undressing which feels odd with someone who he has just met, who he had been cursorily introduced to, and who he is now expected to be on intimate, but unequal, terms.

Ben will always require assistance, he will need people (mostly able-bodied) to help him access the world. There is likely to be an imbalance in power and a dynamic in these relationships where Ben is more dependent, and this be interpreted as weakness. The solution isn’t for me or James to do everything for him, and for us to reduce his dependence on other people by increasing his dependence on us as parents. I am thinking about how to frame these interactions in an age-appropriate way – all children are dependent on adults in some way, but for Ben that means help to be changed and fed as well as taught and entertained.

Some of this is basic – it’s reasonable for Ben to expect people to introduce themselves and explain or ask him about what’s going to happen next before they start to undress him. Some of it is more nuanced. There are people whom Ben immediately likes and trusts, but we can’t expect that this magical energy will materialise in every interaction. Maybe sometimes Ben’s immediate need to be changed, fed, moved or assisted overrides his lack of immediate warmth to the person doing the changing, feeding or moving. Children don’t get to choose all of the adults who they interact with, but I think they should have a sense of what is okay and what is not, and should always feel safe and respected.

Last year we had a carer at home who was mainly assisting and entertaining Ben with us at the weekend. We weren’t convinced she was hugely enriching Ben’s life but with a full family life including two other kids, she helped ensure Ben had what he needed and was read some books. I felt guilty that he was spending time with her (albeit only a few hours), but that’s the bread and butter of being a mother to three kids.

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One afternoon I went upstairs to see how Ben was getting on and as I walked into his room she was hoisting him out of his chair in a way that was wrong, despite having been shown how we do this to make sure Ben is safe and comfortable. I then realised that she hadn’t moved him all afternoon and he was wet and uncomfortable from being in the same chair for hours. I was shocked and explained to her why all of this was unacceptable in front of Ben before asking her to leave the room and having a further chat with her on our landing. I felt protective, like a lioness who needed to corral her cubs and keep them close forever, and I asked her to leave. I bathed Ben carefully and put him in dry, clean clothes and we all watched TV together.

I had reacted in the moment. We generally try to have conversations with Ben’s carers away from the children as we don’t want our house to be a constant management exercise witnessed by them, and they need to have relationships with the carers we employ independently of us. But as I calmed down, I thought it was totally fine for Ben to have witnessed my shock and to know that I thought it was unacceptable.

It is not right for Ben to feel unsafe in his own house. It is not okay for him to be dependent on others for his personal care and for those people to not give it the thought and attention that they should. He shouldn’t have to put up with mediocre communication and monosyllabic conversation. He needs to be able to trust people with intimate moments of access.

I think it’s appropriate for him to see us calling out moments where people do this wrong. We need to make explicit what our expectations are, and to hopefully build in him a sense of what he can expect from adults, how much he has to put up with and when he’s allowed to protest. Later that night Molly, then age two, asked what the carer had done that was ‘naughty’ because she had heard my conversation with her on the landing and had (correctly) interpreted it as a telling off. I told her that the carer had done something wrong to Ben and she had gone home.

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As I put Ben to bed, I explained that it wasn’t okay for the carer to have moved him in a way that was risky, to have left him in his wheelchair for so long. I don’t know for sure how much of this he understood, but I hope Ben – and Max and Molly – know that he has a right to feel safe and comfortable, and grown-ups aren’t always right.

Clicking in the gallery

We took the kids to Tate Britain at the weekend. It’s a good thing to do first thing on a Sunday morning – we can drive there easily, it’s not busy, and we can get coffee and pastries in the café which incentivises the whole trip for all of us.

It was the last day of the Turner Prize exhibition so I had a chat with a guy at the front desk about whether it was suitable for children. I mentioned nudity, and he started talking through whether there were naked people in any of the pieces. I had to clarify that nudity wasn’t the problem, it was what the potentially nude people were doing, since I’d accidentally once walked Ben into a room of Gilbert & George works which were utterly inappropriate. Oh, no, no sex, he said.

And he was right, no sex. But the four nominees for the Turner Prize had all presented video works, two of which were about people who were being or had been killed. Of the other two, we all enjoyed some of a film about the legacy of colonialism in Tripoli. Yes, really. It was beautiful and interesting, and Molly only asked to leave four times.

Video art is perfect for Ben. He is drawn to screens, and these screens were huge. Each artist’s room had just one bench and people came and went so it was easy to manoeuvre Ben’s wheelchair in and out.

James took Ben into a film about queerness and Scotland which seemed safe for kids. For most of the time it was silent, with sweeping footage of ancient standing stones in remote Scottish islands. The other visitors were sitting silently and Ben was engrossed. The only noise was the rhythmical clicks of Ben’s tongue.

Ben has dystonia, which means he has involuntary movements in his muscles. It makes it very hard for him to control his own movements which affects his ability to sit, walk and talk. It also affects the way his tongue works, in that it moves a lot but not in a way that makes eating possible. This means Ben doesn’t control his saliva, and he makes a clicking noise sometimes as he moves his tongue within his mouth.

When he was first at nursery the staff would call him “Dolphin Boy”, for the little clicks he would make throughout the day, like he was trying to communicate on some level unintelligible to mere humans. He would make the sound when he was relaxed or interested in something – never when he was stressed or uncomfortable, when his mouth would be tense. He would often click when he was lying in bed, or when we were hanging out at home and he was content. Over the years he has done it less.

When Ben was younger we were self-conscious about him making noises, particularly in very quiet places. For a child who doesn’t talk, Ben can be quite noisy. He often kicks which makes his wheelchair squeak, or makes noises to complain, or shrieks if he is excited. It doesn’t matter if you’re in open, noisy areas but in silent galleries (or cinemas, restaurants, planetariums, theatres) the noises can seem loud and potentially disruptive. I would hate the idea of other people being bothered by the noise. I’m the kind of person who would rather not eat sweets than risk making loud crackles with a packet of fruit pastilles in a cinema.

Over the years we have come to notice or care about this less and less. If Ben is making a lot of noise he is often not enjoying himself, and we will take him somewhere else, out of the theatre. But if he’s making noise while enjoying something, then so be it. Ben is often the one laughing loudest and longest at something funny at the cinema, but he may also be making some noise in the quiet bits. If someone else is bothered by a disabled child making some noise, then I don’t really care. Odds are they could visit again, whereas outings for us are logistical challenges. I think expecting one mode of behaviour from all humans in every public space is, when you start to think about it, ridiculous. And actually, much of my anxiety about disrupting other people with our family’s noise is (was) presumptive – I imagine people are annoyed, when the vast majority of people either haven’t heard it, or have but are relaxed about it. We meet lots of people who are friendly to us in these situations, even when we’re blocking their exit from the row with Ben’s wheelchair and the four hundred bags we like to carry with us at any one time.

Still, it’s one thing to intellectually decide that it’s okay for Ben to make his noises in places where they might draw attention, but it can be another to not feel a twinge of anxiety about it. Over time, I’ve come to marry the two. I hear the noises themselves less, I’m less likely to see whether other people have noticed, and I care less about all of it.

In the dark room at Tate, James said no-one turned towards the noise as he, Ben and a group of strangers watched sweeping Scottish scenery accompanied by the rhythmical clicks of Ben being content. I think that’s kind of wonderful.

We then rewarded ourselves with croissants and cappuccinos, and then wandered through the main galleries of Tate looking at art back through the centuries. Somewhere towards the sixteenth century Molly took her shoes off and tried to jump off the benches, before shouting that she wanted to run. I tried to tame her while James talked to the boys about paintings of men on horses, and paintings of men fighting.

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Molly’s just turned three, and it’s an ‘interesting’ age. During our trip to Tate our disabled child was at no point the one that we were self-conscious about, that we were noticing people’s reactions to, or worrying whether his behaviour was appropriate for the space. Partly because I think the noises Ben makes are largely appropriate to all spaces, but also because no-one notices him when a small but furious girl is careering towards art of national importance, tripping people up as she goes. There’s a moral in there somewhere, beyond the immediate lesson that one way to distract yourself from overthinking your disabled child is to take a three year old whirlwind with you wherever you go.

‘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 Perils of the Internet

Like practically everyone in the developed world, I am trying to be more thoughtful about how much time I spend on my phone and on social media. I try, with mixed success, to not spend time on my phone around the kids, and to avoid disappearing into a blackhole of news about people I don’t know. Every once in a while I think about deleting the apps. Sometimes I actually do it, but I can’t quite resist because those clever engineers know what they’re doing and I enjoy the pretty pictures and surreptitious snooping.

But it’s also because I get genuinely useful information and a sense of solidarity from the social media I use. It’s brilliant to be able to make connections with disabled people, to learn more about their experiences and their politics. It’s great to be able to talk to other parents of disabled children. I find out about events, equipment and approaches, from organisations and individuals. I think there is huge value in sharing experiences, hence this blog!

But once you find yourself in this little corner of the internet, there are many stories written by parents of disabled children, and it can be uncertain ground. There is a fine line between sharing experiences and oversharing information about a child who may not be able to consent.

I question myself a lot about what it is okay to write about and what is not, particularly when I read things which I think are inappropriate – perhaps because they show photos which I wouldn’t want to see of me as a child on the internet, or because they dwell on how difficult their life is because they have a disabled child.

I worry that when that child is an adult they will be sad to read what was written about them. I am sometimes concerned that the parent’s account is disrespectful to disabled adults with the same impairments as their child. I am by no means beyond reproach – I am sure I have shared things that I thought were okay at the time, but would now not. Sometimes I think that maybe I shouldn’t be sharing anything at all, but I keep coming back to my conviction that as long as disabled children and adults are perceived as ‘other’ by much of society, there is value in attempting to puncture ignorance with our stories. I try my best to respect all of my children by carefully editing what I share (and perhaps I should share more photos of myself…).

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What I am particularly drawn to are stories about disabled children overcoming communication difficulties, and adults that use Alternative and Augmentative Communication (AAC). It is inspiring to see people who have found the communication system that works for them, and are able to say what they want to say. It’s encouraging to see that methodical, consistent use of AAC can pay off – that children who were unable to communicate have a viable way to do so.

If there’s one thing these kinds of internet stories are good at, it’s celebrating the role of the parent, most likely the mother, in facilitating their disabled child’s access to AAC. Often the mother has fought for the right device, has pushed those surrounding the child to presume competence, has homeschooled the kids when the schools weren’t good enough, has modelled AAC language to their child consistently. The kid is therefore doing really well (possibly writing messages saying how grateful they are to their mother).

And, obviously, these stories are amazing. I want Ben to be the subject of these stories – celebratory, happy stories featuring quotes from a child that found it tricky to use expressive language.

So, does Ben have the right AAC system? Is he getting the right education? Is he getting enough specialist input? Should I be homeschooling him? Am I, personally, doing enough to encourage literacy? Are we modelling enough? Are we doing it every day, in every place, at every opportunity? Because if Ben doesn’t become expressively literate, will it be my fault?

These are the kind of myopic, self-obsessed thoughts I have as I peruse Facebook and it’s not that relaxing. I know I don’t want to homeschool any of my kids – I taught an English camp for Spanish kids when I was younger and I learnt from that summer that I am a terrible teacher. I shouted a lot, particularly when it looked like the kids were enjoying themselves too much. I think there are all sorts of advantages to going to school beyond literacy. But still. The pressure. My god, the pressure.

(Sidenote: if crafting expertise was crucial to teaching literacy, I’d be all over it. Gratuitous World Book Day photo:   )

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And then, occasionally I get a moment of thinking we’re not failing. We’re doing our best, and maybe we’re actually doing okay.

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Today Ben was home from school because he has yet another cold (don’t get me started on the sickness count in this house this winter, it is beyond tedious). Molly was with us, and I was pottering around trying to get stuff done between the nose wiping and Calpol distribution. Molly had pulled Ben’s YES and NO symbols off the velcro on the back of his chair, and she was standing next to him holding them up, saying ‘Yes, Ben. No, Sam’.

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This is how Ben answers questions – he looks at yes and no symbols. She is doing this because two year olds copy what they see around them. She has noticed our modelling and she is using AAC with her brother. It’s a little bit magical. We must be doing something right.

The temptation to interrupt

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If you have a child who doesn’t follow the typical path it’s difficult to have a sense of where they will end up. I don’t mind this too much; I don’t find it that useful to have conversations about what Ben may, or may not, be doing in ten years time.

But everyone looks for role models for themselves or their kids, and some sense of where the path might be going. Disabled adults are rarely found in mainstream media, so I was lucky recently to be at a study day where a panel of five Alternative and Augmentative Communication (AAC) users answered questions from the audience using high tech devices. Three of the five used eyegaze, exactly like Ben is learning to. There is a video here.

It is important, and inspiring (not in an inspiration-porn kind of way) to see people using AAC to talk so eloquently. THAT is where we want to aim for.

But I was really struck by something that one of the panellists – Kate Caryer – said at the event: she pointed out that people sometimes think of a communication aid as a gift or a toy, that users should feel grateful their local authorities have provided. Whereas it is in fact a human right.

Respecting Ben’s right to communicate means his device needs to be there, in front of him, as much as possible, not just when we decide we can fit it into his daily life. We need to make sure the batteries are charged, and the mounting arm is ready when it is needed. We need to force ourselves to fit it even when it feels like a bit too much effort on a busy day.

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But more profoundly, we have to be ready to hear what is being communicated. We have to alter our own culturally-constructed notion of how conversations work.

I find it uncomfortable to leave gaps in conversation – I feel I have to fill them. I first realised this when we lived in the Middle East and would spend time with Syrian friends who were happy to sit companionably with long pauses in conversation. I had to teach myself to enjoy this time and not fill the gaps with mindless waffle. This was made easier by my rudimentary Arabic.

Someone using a communication aid to talk is probably going to take longer, more time than a typical talking person. At the study day, it took time for the five individuals there to answer questions from the audience: they need to hear the question, navigate (with eyes or fingers) around their communication device to find the vocabulary for what they want to say, and then speak it.

This often makes conversation with an AAC user slower than we are used to, and I for one need to force myself to accept that rhythm of speech. This means waiting the extra 30 seconds to see what your conversational partner wants to say, and not interrupting. Ben isn’t able to shout immediately, in the way that Max does frequently, ‘Mummy, I was actually in the middle of talking when you interrupted me!’

I frequently screw up even when I am trying my best. I realised recently that after a conversation with a woman who uses a communication aid, I had said goodbye and walked away. I hadn’t waited to see if she wanted to say goodbye, or even if she had anything else to say. I felt a little sting of shame when I later realised. We can all have good intentions, but we don’t always behave as well as we’d like.

If you manage to fully embrace the alternative pace, there are rich rewards. A few years ago when Ben was just learning to look at Yes and No symbols on the armrests of his wheelchair to answer questions, we went to a local park and met some friends. One of them, who happens to be a nurse, crouched down in front of Ben so she was at his level, asked Ben if he was enjoying his new school, and then waited.

Ben slowly and deliberately looked down at the Yes symbol. It was the first time he had totally independently answered a question from a stranger, and it happened because she asked the question in the right way for him.

If we accept that people with communication difficulties have a right to talk – and therefore to be given the support, equipment and training they need – then they also have the right to be heard. And we, the people taking our communication skills for granted, have to learn how to listen. Not make assumptions about what is being said, or interrup, or fill the gaps in conversation with inconsequential waffle, but actually listen.

I mean it’s a good tip for life generally – many marriages could benefit from partners actually listening to what each other are saying. But rather than forcing the AAC user to navigate their way through their devices to say ‘Stop interrupting me’, maybe we should just take it upon ourselves to get our own houses in order.

 

A New Standing Frame

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Ben needs a new standing frame. He stands most days – he is unable to stand on his own so the standing frame provides enough support to keep him upright.

On a busy day Ben can spend up to 10 hours a day in his wheelchair. He ‘tolerates’ sitting in a chair really well, He’s happy being able to see around him and his chairs are comfortable and supportive enough for him to be content to spend hours in them, but it’s a long time for his body to be in one position and over a lifetime sitting this much can lead to all sorts of problems.

There are lots of advantages to standing. Human bodies are designed to be upright and although Ben spends about 12 hours a night lying flat, it’s not the same stretch as standing straight. Bodies should ideally experience a variety of positions, and the digestive system benefits from him being upright. Also kids like Ben are at huge risk of their hips migrating out of their sockets and in the absence of daily walking, standing is a good way to bear weight on bones and joints.

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Ben first had a standing frame when he was almost one year old. At that stage he often hated it, and it felt more like a torture instrument than a helpful aid. These days Ben will happily spend an hour standing as long as he has good enough entertainment. The standing frame isn’t particularly elegant, and takes up a lot of room, but the benefits to Ben are worth having it available to him.

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A rep visited recently with a new kind of standing frame for Ben to try. There was normal amount of fiddling and adjusting, but once Ben was in the new standing frame he was happy and his physio was able to see that it worked.

At the end of the session we were asked what colour we wanted the new standing frame to be. Bear in mind that this is a standing frame that lives in Ben’s room, the room that was finished and decorated earlier this year. The room that I am desperately trying to keep as a boys bedroom rather than an equipment storage room.

Ben’s physio said we could have it in black, pink, orange or blue. Blue, I said. That will be best.

Then James said, ‘Um, shouldn’t Ben choose what colour he wants his standing frame to be?’.

Of course he bloody should! What was I thinking? I spend a reasonable amount of my time glowering at people who don’t talk to Ben directly, reminding everyone that just because he can’t talk doesn’t mean he doesn’t understand what people are saying. I tell people that he is a boy with views and preferences. What kind of ally am I?

Except… I have a history of manipulating my children’s choices. When Max is choosing between two tshirts and one is really ugly, I will unashamedly steer him towards the one that I don’t dislike. I haven’t allowed some things in Max and Molly’s bedroom because I don’t like them (e.g. massive garish posters).

I had a strong suspicion that given the choice Ben would choose to have an orange standing frame. Orange is his favourite colour. Let me explain that I have a mixed relationship with orange. It’s a hard colour to get right in my view. And the orange of this standing frame was more sickly, pasty colouring paper than cool, vibrant citrus fruit.

Fortunately for Ben he has hugely improved his ability to clearly communicate Yes and No over the last year. Last year it was often difficult to tell whether Ben was answering a question and we estimated that we clearly understood his yes and no maybe fifty percent of the time which is a bit tricky with a binary outcome. Now we would say that we get a clear yes/no about eighty percent of the time.

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So using his latest communication book I talked Ben through the options and asked him what colour he would like his standing frame to be:

Would you like a new blue standing frame, Ben?

No.

Would you like a black standing frame?

No.

Would you like a pink standing frame?

No.

Would you like your new standing frame to be orange?

Yes.

Obviously.

Totally cocking up my interior design aspirations.

Thanks Ben.

Having a laugh in Trafalgar Square

We have recently been printing photos – mainly for a wall in our house where we have an ever expanding, slightly chaotic collection of family photos. There is currently not a single photo of Molly on the wall. She is almost two years old. We need to rectify this quickly, before she’s tall enough to see the photos and old enough to mind.

As I go through the photos on our computer, I get distracted by loads that will never make the cut for the wall. I like to think I am a decent photographer, but almost all our recent pictures are badly composed phone photos of non-compliant kids. So I force myself to focus more on the memory and emotion of when the photo was taken, than on the quality of the composition. Kids don’t care if the background is full of mugs and syringes, they just love a photo of them with their dad.

But this photo, I love:

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It is technically flawed, badly composed. But look how happy Ben is! And look at all the tourists wandering around behind him, oblivious!

This was taken during the summer holidays, just off Trafalgar Square. James, Ben, Max and I had just been to the theatre to see Horrible Histories at the Garrick Theatre. We had brilliant seats. Ben’s space was just off the foyer, at the back of the circle, so quite a long way from the stage but with a brilliant view. This is everything we look for in a theatre seat for Ben: wheelchair spaces in theatres are often right by the stage which he finds a bit much. There have been numerous times when we have had to leave a theatre early because Ben isn’t enjoying the performance. (His other pet hate is unexpected, roaming musicians in theatrical performances. He likes people to stay on the stage, not appear behind him playing a trumpet.)

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The rest of us had seats either side of Ben, and we all enjoyed the brilliant performance. The boys have watched almost every episode of the TV programme so we knew what to expect. It was genuinely amusing for all of us, with poo jokes interspersed with historical facts, and loads of songs. Who doesn’t like a rap about Henry VIII?

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After the performance we went to a café just off Trafalgar Square for lunch. We sat outside, with the pigeons, and put Ben’s ipod on while we were eating. Understandably, Ben gets bored if he’s just sitting around while being fed, and it’s not possible to talk to him or read him a book while eating a sandwich, so we always have a bluetooth speaker attached to his wheelchair (the pink circle by his head) which is connected to an ipod full of audiobooks. I think he’s listening to a David Walliams story in this picture.

I love the photo because how could you not love a kid laughing this much? But also in this photo I see all of the other ways in which I have changed over the seven years I have been his mother. At the beginning going on a trip like this to central London could be a bit daunting – how would we get there? Could we get Ben’s wheelchair in? Had we packed everything? Would Ben enjoy it? When Ben was very small I sometimes felt self-conscious about feeding him in public. I was really aware of how much noise we were making, and would have felt a bit anxious about playing an audiobook in a public place. I might have noticed whether people were looking at Ben, not because I was ashamed of him but because I was worried about him noticing them looking. Sometimes it felt like the logistics involved in getting us somewhere weren’t worth the risk that Ben wouldn’t enjoy it.

This trip was lovely. We packed what we needed (takes time, but we’ve done it hundreds of times) and drove in to the West End. We were a bit early so we had a coffee in Leicester Square. Went to the theatre, had lunch at Pret. Admittedly we had left Molly at home, as she would have added an unnecessary level of unpredictability to the whole outing.

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Not only do we now not care if people see Ben being fed through his gastrostomy tube, we don’t even notice if people are looking. If he laughs hysterically, loudly, we are chuckling with him rather than being self-conscious about other people noticing. If Ben needs to listen to an audiobook in order to not get bored, that’s more important than whether someone doesn’t want to listen to David Walliams in their lunchbreak.

And what this photo shows is that Ben has a brilliant time on these kinds of trips. We all do. He hugely enjoyed Horrible Histories, and now knows more about the naming of Saxon villages than he did previously. He is able to take advantage of us living in London.

And the general public in Trafalgar Square are largely too busy going about their business, admiring Nelson’s Column or grabbing a turmeric latte, to notice whether our son is disabled, or tube-fed, or listening to The World’s Worst Children.

This is the kind of photo I wish I’d had in a crystal ball when Ben was little and not enjoying life. I might laminate it and show it to anyone who gives us the pity-look and talks about how sorry they feel for him. Don’t feel sorry for him or us, he’s having the time of his life!