Changing Places

As Sam 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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Sam 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 Sam, 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 Sam’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 Eli 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 Sam. I am going to attempt to talk about this clearly, without compromising Sam’s right to privacy.

Sam 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 Sam 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 Sam 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. Sam 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 Sam 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 Sam has appointments at least four times a year, often more, has nowhere for Sam to be changed – awkward when waiting times mean we are there for two hours, and then will have an hour journey to take Sam 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 Sam 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 Sam’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 Sam, 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.

 

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Cuddling and carrying

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Recently I have found myself talking about good things that have resulted from Sam’s birth and life. It’s now less eight weeks until the birth of a new baby so a good time to focus on the positive.

One of these conversations was about carrying Sam. Sam is almost 18kg which is very light for an almost-six year old but quite heavy for someone who can’t support any of their own bodyweight. He has various pieces of equipment to sit or stand in but every day there are dozens of transfers to be done: from bed to changing table, downstairs to specialist chair, out of chair to changing table, back in to chair, in to wheelchair, out of wheelchair, changing table, upstairs, in and out of standing frame, in and out of bath, etc etc. This is just the basics – if we spend the day doing things away from home there will probably be more lifting – so Sam can sit on top of the sculpture in the park like Eli, or to be lifted so he can see animals over the fence, or in order to sneak up on people in the woods.

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We are just on the cusp of getting a hoist to help us with some of these transfers. A hoist is a machine which attaches to a sling underneath Sam and lifts him up. We have known this is coming for a while and I find myself surprisingly philosophical. I strongly suspect Sam won’t mind – he loves swings and hammocks (and zipwires) so I don’t think he will mind repeated suspensions throughout the day. I know there is only so long we can ask others to lift him and we have a responsibility to provide an option that doesn’t endanger back muscles.

It’s the mediation of my relationship with my son through equipment that I resent. At the moment I often lift Sam like (for want of a better description) a baby, with one arm cradled under his neck and the other under his legs. He always looks up when I do this and I can look down at his beautiful little face, and he often has an expression of pure joy and comfort. Should anyone else infantilise Sam I will hate them forever (or close), but I am allowed. I have been carrying him this way for almost six years. One of the joys of early motherhood is the physicality of it – small boys who know your body better than you do and want their skin on yours. It is sad that these moments will be slowly replaced by the attachment of a sling to a hook, the pressing of some buttons and the whirr of a machine. I must find a way to keep the physical connection, for us to both remember the joy of him being on my lap.

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James does most of the outdoor carrying – he is the one helping him climb trees – but I do my fair share of the lifting, including carrying Sam up and down stairs at home. Earlier this year, before I was pregnant, we realised that if I was going to continue doing this I needed to be strong so in addition to running a bit I started seeing a personal trainer who focused on weights and strength. No-one should get the wrong idea about this – my default position is inactivity and I didn’t voluntarily run outside until I was 32. I am no gym bunny. My relationship with the trainer involves him encouraging and/or forcing me to stop being so pathetic while I deny eating a loaf of sourdough bread every week. I do not look like someone who spends a lot of time exercising (because I don’t).

But what began as a way to continue lifting Sam has been a revelation. Partly because it’s time spent doing something completely different to wiping small children, but mainly because I didn’t realise how empowering it would be to feel strong.

Then I got pregnant and as my bump has grown I have carried on lifting Sam and training at the gym. Nothing feels more satisfying than lifting (admittedly small) weights, surrounded by grunting men in vests, in the male-dominated section of the gym. Or continuing to be able to do all of the things I would normally do with Sam while 31 weeks pregnant. Sam is very accommodating of being literally pushed aside by a growing bump. I get a bit out of breath as we get to the top of the stairs when I’m carrying him, but I can do it and I will carry on for as long as I am able. There will inevitably be a month or so post-birth when I can’t lift him and even holding him might be tricky, so I’m making the most of it while I can. I am extremely appreciative of having this body, which is making its third baby and still able to carry its first.

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I have been going through a phase of obsession with the author Kate Atkinson and came to re-read a book of hers recently. I had forgotten how utterly unsuited the storyline is to me right now; I had to abandon it after a scene about a mother being murdered in front of her children precipitated some particularly heartfelt weeping. But just before that I read this passage:

‘ Their mother was wearing Joanna’s favourite dress, blue with a pattern of red strawberries. Their mother said it was old and next summer she would cut it up and make something for Joanna out of it if she liked. Joanna could see the muscles on her mother’s tanned legs moving as she pushed the buggy up the hill. She was strong. Their father said she was ‘fierce’. Joanna liked that word. Jessica was fierce too.’

Kate Atkinson, When Will There Be Good News?

I want to be strong. And when it comes to caring for my kids, I want to be fierce.