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– disabled children/people aren’t as visible or as involved in their local communities as they should be so they become withdrawn and isolated.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.