space

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.

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.

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.

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.

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?

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

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

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

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

‘Astronauts cannot be in wheelchairs’, he said.

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

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

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

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

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

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

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

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

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

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

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

‘To infinity, and beyond!’

Son Stories by Jessica Moxham

Stories about our son Ben, his siblings and our family. Ben is 12, loves stories and is disabled. I am learning to be his ally.

How to wee in space, or South Kensington

A space rocket for Ben