Barriers

/ jess / 4 Comments

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 Ben 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 Ben 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 Ben and I bring him up in conversation less often. For a multitude of reasons, Ben 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). Ben 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– disabled children/people aren’t as visible or as involved in their local communities as they should be so they become withdrawn and isolated.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 Ben since Max 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. Ben 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 Ben.’

We had a brief chat about what Ben was watching, how he was, what his brother was up to, and they said they had seen Ben 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 Max a free chocolate bar to distract him from shouting in my ear while I was trying to pay for some milk. I then let Max 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.

Circles/Bananas

/ jess / 7 Comments

I’ve been on a training course for the last year or so, learning to be an ally to Ben. I’ll come back to what ‘ally’ really means in this context, but one of the things we looked at is Circles of Friends (sometimes called Circles of Support).

My (superficial) understanding of this idea is that it is a process to intentionally help people make friends – for people who are finding it difficult to make and keep friends on their own, who are feeling isolated. The key principles are that no-one is paid to be in the Circle and it is based on asking the focus person what they want (not what other, even well-meaning, people think they want). It’s mainly used for teenagers and adults. In practice, it means a group of people who agree to meet regularly and assist someone to fulfill their dreams and ambitions.

It’s a way of concentrating attention on the ‘focus person’ and trying to look at what that person would like from their life and help make that happen within their local community – it could be ‘going to the pub’, or ‘moving house’ or anything inbetween. There’s an example in action here.

I found it fascinating but not that relevant to us right now. Ben is 4, surrounded by friendly people at school, nursery and home; we’re not at that stage yet.

Last week it was half term and Ben and I went to buy some avocados. I went in to pay, leaving Ben in his wheelchair just outside, and as I handed over the money I glanced at him and he gave me a massive grin. As I looked away, I thought I saw him smiling at a man who works in the shop who was organising the fruit. When I came out again, the man said hello to both of us, smiled at Ben and offered him a banana. We all smiled a bit more, said thank you, and off we went to return home.

We have history with Banana Man (as I’ve just decided to call him). Last month, Ben and I went to the same shop. It was after school and Ben was tired. As we arrived, I put Ben’s wheelchair near the fruit outside the shop and at that exact moment a dog, which was also being left outside while it’s companion did some shopping, started barking. Loudly and insistently. Ben has trouble managing his swallow with his breathing and if things take him by surprise he can lose control for a bit, which throws everything out of kilter. In this case, the shock of the dog barking (and barking, and barking) meant he started choking. I quickly wheeled him away from the shiny ripe fruit by which time he was vomiting. So I take him out of his wheelchair and we’re both hunched on the pavement, when soon-to-be Banana Man comes up with loads of tissues and a concerned expression, asking if he can help. Actually there’s nothing to be done – I clean up Ben with the donated tissues and we head home (without any milk). It was an unfortunate incident for both Ben and my tea addiction.

We have a 2 year old, Max, who is a bold, bolshy boy. He’s loud and cute and we rarely take him anywhere without someone commenting (in a nice way) on him, what he’s doing, what he’s good at, how funny he is. Small children are fantastic social conduits and people who normally wouldn’t interact become chatty with Max around. You can bet your house that if you walk to the shop with Max, someone will acknowledge him at some point. That happens a lot less with Ben – he’s physically passive, he doesn’t talk and interrupts people less. Maybe people notice his wheelchair more than him, or they’re too busy thinking about bananas to notice how beautiful he is.

The banana thing made me think that tiny incidents like this are our small, less formalised version of a Circle of Friends for Ben. He can’t currently make friendships easily so these small connections are important to us – Banana Man knows who Ben is, smiles and interacts with him, and makes us feel like we belong in our little community. He smiled, and Ben smiled back, and that’s where a sense of connection begins. Mr Banana might not realise it yet, but I’m now rather fond of him.

Ben held the banana all the way home (no mean feat for a boy with a tricky relationship with his hands) and was very pleased with the whole trip. I am thrilled that the cheapest shop in our local parade is the one Ben is forging links with – if he’d picked the shop next door we’d be bankrupted buying £5 loaves of sourdough in an effort to encourage friendship.