‘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 Sam. 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 Sam’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 Sam’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 Sam 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 Sam 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 Sam 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.

 

 

 

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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.

 

Barriers

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In the early 1980s disabled people came together and redefined what they meant by disability:

‘Disability is the loss or limitation of the ability to take part in the normal life of the community, due to physical and social barriers’ (adopted by Disabled People’s International, Vancouver 1921)

They basically turned the whole thing on its head – rather than being defined by what they were told they were unable to do and what was wrong with them, they self-defined as being disabled by the fact that the world around them wouldn’t let them participate and be included in the way they would like, whether through, for example, physically inaccessible buildings or prejudiced attitudes.

This was a revelation to me and made me think differently about Sam and what he can do, and how we deal with it. It is connected to the theories of medical and social models of disability of which more here.

The problem with inaccessibility (of all kinds, physical and social) is that you become conditioned to it. Buildings are difficult to get Sam in to and so we start thinking it’s easier to stay at home, or only go to places we’ve been to before. People say insensitive things to me about Sam and I bring him up in conversation less often. For a multitude of reasons, Sam doesn’t make friendships with peers and doesn’t get invited to birthday parties so we get used to basing his birthdays around family (adults). Sam can’t go to the local school because the building doesn’t have a lift and they have no experience of physically disabled kids. So it goes on in tiny and massive ways until disabled people aren’t taking part in life around them in the way they could be if everyone made a little more effort.

The most frustrating thing about all of this is that it’s a predictably vicious circle – disabled children/people aren’t as visible or as involved in their local communities as they should be so they become withdrawn and isolated. They are then not visible so people think of them as different, and so it becomes harder for them to be involved, all the time being labelled as being dependent when integration would be the first step to them become less dependent. It’s a bit depressing.

It is important that the disability rights movement continues to fight for better access, more inclusion, more acceptance of difference, but I think the world also gets better by individual people doing kind things and being welcoming and understanding. It is impossible to overstate the significance of small acts of friendship.

In the middle of a long drive to Cornwall in April we stopped at a service station to give everyone some food and a break. I was sitting in the over-lit buffet restaurant on my own with Sam since Eli had broken free to play on a massive plastic train, and was feeding him through his gastrostomy tube. I had noticed out of the corner of my eye an older couple looking at us – not in a mean way, just a curious glance, and thought nothing of it. I am totally used to looks, but have an amazing ability to filter them out (aside: a skill honed by being the only female architect on building sites in the Middle East). Before I spent every day putting liquids down a gastrostomy tube, I would have been mightily intrigued by a woman getting out a load of syringes and fiddling with her child’s tummy in the middle of a cafe. Sam was watching his ipad and happily oblivious.

The couple got up to leave and as they walked past us, the man said ‘Could we say hello?’.

‘Of course’, I said, ‘Hello! This is Sam.’

We had a brief chat about what Sam was watching, how he was, what his brother was up to, and they said they had seen Sam smiling from across the restaurant. Then we all wished each other a happy Easter, and said goodbye.

I would bet my new clogs that they have some personal experience of disability, but they didn’t mention it. They just made us both feel welcome and happy. I’ve thought about that couple at least once a week ever since because those kind of interactions are rare, and the world would be a better place if there were more of them.

P.S. Banana Man (as he was christened in my previous post) continues to earn his place in my heaven. Last week he gave Eli a free chocolate bar to distract him from shouting in my ear while I was trying to pay for some milk. I then let Eli eat the chocolate bar in the car because I’m a weak parent, which resulted in him bathing his entire car seat in melted chocolate, and me spending an evening dismantling the whole bloody thing to clean it. I preferred it when he stuck to bananas. And also I am a bit worried about his profit margin.