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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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.