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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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.