‘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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A House for Sam

We are adapting our house to make sure it works for Sam. We have moved out and have so far paid builders thousands of pounds to rip things apart and make a perfectly good house look like it’s been hit by a natural disaster.

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(Photo – what will be the lift, lift lobby and therapy/play room)

It’s a big, disruptive, expensive construction project of the kind we (hopefully) will only do once. We plan to move back in to the house next year and then never move again. Or at least not until the house doesn’t suit Sam any more, which we hope won’t be for an extremely long time.

This kind of project throws up a host of issues on every level from extremely detailed (what kind of sockets?) to big questions about the way we want to live our lives. Decisions about designing your family house go to the core of who you are and how you live (or want to live). I’m an architect and these are the issues that first drew me to architecture: how do buildings reflect who we are as people, what we care about and what we do day-to-day. This stuff is deeply personal and others in the same situation would make different decisions. We are extremely privileged to be in a position to be able to craft our house so carefully.

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(Photo – hole for the lift in what was the kitchen)

Most buildings in the world are inaccessible to Sam but we can create a little island of utopian level access, where he can go (almost) everywhere and everything is designed to make all of our lives as easy as possible.

But how do you adapt a house for a disabled person who is currently six years old but will hopefully still be living there when they are twenty six?

How to you make a house perfect for the disabled child, whilst not compromising the personality of the property and making it a house for our whole family?

Should we compromise on the kind of house we want to live in to make it disability-friendly? Is it possible to have have a house that works perfectly for a wheelchair user but that isn’t the first thing you notice?

There are two principles that we have had from the beginning: the house needs to feel like a family house, specifically OUR family house with all of the characteristics it would have had if Sam wasn’t disabled; and the house needs to work perfectly for Sam and enable social connections for him – between family and with visitors. We are currently hyper-aware of some of the downsides of being in a house that hasn’t been specifically adapted. It’s getting harder to give Sam a bath, and even small changes in level get harder to get his wheelchair over as he gets heavier. Because it’s less easy to carry him, Sam rarely comes upstairs to our bedroom or to Eli’s room.

If you go to as many adapted or accessible properties as I do, you’ll realise that ‘experts’ are often expert in how to make a house work for a wheelchair user and that isn’t the same thing as making a home for all of the members of the family in it. The cheapest and easiest way to adapt houses is often to tack an extension on to the back. This makes lots of sense, except it often involves siblings and parents sleeping upstairs and the disabled child never going to their bedrooms. If, like Sam, the child has carers then you can end up with unofficial zones within the house where the disabled person and carers spend most time in particular parts of the house and there’s not enough crossover with other members of the family.

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(Photo – widened doorway)

Sam will be at the centre of our house, literally. There are three floors, and his bedroom will remain on the first floor. We will all pop in and out, or wander past, his room all the time. It also means we, as parents, remain totally involved in every aspect of his life. Even if there are days when carers are spending most time with him, we are there in the background interfering and suggesting, as is the prerogative of a parent. This will be facilitated by a through-floor lift that will take Sam up to his bedroom, but also further up to our bedroom and Eli and Stella’s.

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(Photo – Sam’s bedroom)

Downstairs we will have normal reception rooms (one for family-only since we so often have carers in our house now) with wide doorways, a lift lobby big enough to turn a massive wheelchair and level (or near level) floor finishes. Not a single step on the ground floor. One should not underestimate what a feat this will be involving much chat about thresholds, demolishing a conservatory and building a new dining room. We will have a patio on the same level as the kitchen and dining room, which will ramp down to the garden. Sam will use the same doors as all of us and it should be a mere matter of pushing him where he wants to go, without bumping over ledges and going through alternative doors. The rooms are big enough that when Sam is in even bigger wheelchairs we will still be able to get round him. There will be enough room around the dining table that he should be able to sit anywhere, not just in the one spot that means we can still walk past.

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(Photos – demolished conservatory, building new dining room)

The house will have pieces of specialist equipment, at vast expense, though actually these aren’t as numerous as I anticipated. You don’t need that much stuff if the whole design of the house is built around the idea of a wheelchair being able to get everywhere. The lift is a massive thing (physically and in expense) but a simple idea. There will be track hoists mounted on the ceilings of four rooms (which will mean Sam can be lifted in a sling between wheelchair and bed, for example, rather than being lifted by us). There will be changing facilities on two floors. And there will be a bath.

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(Photo – what will be Sam’s bathroom)

The bath has the subject of much conversation. It is, apparently, easier to shower people in wheelchairs. Easier for carers that is. But we generally operate on the basis of what Sam likes and needs, rather than what suits others. The boy loves baths, so we need a bath. And if that’s a whacking great big thing that goes up and down, needs the floor to be strengthened and a new heating system to produce sufficient hot water, so be it. It will be in a bathroom with two doors – one straight in to Sam’s room so he can go bath-to-bed in one carer-friendly straight line, and one on to the landing that leads to his brothers and sisters bedroom. Because the bath is essentially just a really expensive bath and so it will be the bathroom for all the kids.

We are lucky to be able to ask ourselves how we want our family to work, and therefore how we want our house to facilitate that, and to have the opportunity to alter the fabric of the building accordingly. It is all very exciting but it feels like a huge responsibility – like all construction projects, we’ll only get to do this once and we need to get it right.

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(Photo – looking up three stories of the house through the hole made for the lift)

A friend of mine joked that once we have adapted our houses our kids will be able to visit each other, if not anywhere else. It’s not really a joke – as Sam gets bigger and his wheelchair gets heavier it is becoming harder for us to go to other people’s houses with him and we can’t visit places that don’t have disabled access. So the political becomes personal – we want to compensate for the world remaining inaccessible by making our house a truly welcoming place for Sam and his friends.