People who know me well will know I have a big issue with the language used by services when referring to disabled people. I could rant forever about the terms used to describe people like my son, I’ve heard them all but maybe I’ll leave this for another time.
For me this issue goes beyond the usual labels and is more about the day to day language, i.e. the jargon used by services, providers and in turn by families.
Here’s what I mean…
When my eldest daughter was younger she went to rainbows (pre Brownies) and when we spoke about where she went on a Wednesday evening we said “T’s going to Rainbows”. When G went to Beavers (pre Cubs) the reports about him stated “G is accessing mainstream play and leisure opportunities”... okay, so it took a lot more organising and we had to make sure he had support but there we were thinking he’d just gone to Beavers like all the other kids his age.
G went to a special school for kids with severe learning disabilities (don’t get me started on the term “special”) it was co-located school on a site with a local primary and then later secondary school (or “mainstream school”). Rather than just join in with all the other kids he “went for integration” (like it was a lesson) or had “inclusion opportunities” instead of just playing in the playground.
When T was older she moved from University halls to a house she shared with two others. No one said she was living in a “group home”.
Later she moved into a new flat and everyone said “T’s moved into a new flat”. At the same time her disabled brother was moving into his new house and people asked me “has G got a new residential placement? Or… is he in supported living? My response was “no, he’s moved into his new house!”
Then there’s transition. Young non-disabled people grow up and they make their choices, go to university, go to work and move on to live their lives as adults. Disabled young people “go through transition” ( although thinking about it maybe “going through” is more accurate as they often go through transition without doing any of the above!)
As parents we find ourselves, often without being aware we’re doing it, using the same language when we talk about our disabled kids. At a workshop I ran for parents who had kids “in transition” I’d asked what their hopes and dreams and fears and nightmares were for the future. One parent wrote…” to be able to find an appropriate placement” another said “the fear we won’t find suitable premises”
Who talks like this in the real world? We don’t use these terms to talk about the things we or our other children do so why do we do this with our disabled kids. My theory is that as parents we work with so many professionals we start using their language. We do this so they treat us as equals, so they don’t think we are stupid…we’ve learnt the lingo and so we know what you’re talking about…or maybe it just becomes a habit that we all get into without thinking!
Yes, our disabled children all have additional needs that mean they need additional support but the language we use instantly sets them apart from non disabled people. People like G get “placed” instead of moving to or attending somewhere, they “access” things instead of just going… they become “service users” instead of people who use services, they have to “access universal services” instead of just going to the local hospital, clinic doctors surgery… it drives me crazy!!
The one that’s really getting my goat at the moment is “accessing the community” what the hell does this mean? Who uses this term in any other walk of life? What do we mean by “the community” and don’t we all live in some kind of community or other anyway so why do we need to access it if we are already living in it? What is meant by this is join in with local groups or clubs, go to the pub, go swimming, go to the park, go shopping etc etc. So why can’t we just say this?
Now there’s new jargon that’s ironically been introduced to make us look at people like G as individuals. It’s called “Personalisation” I’m a big fan of personalisation and live and breathe its principles. I strongly believe that person centred approaches are the only way forward, the tools are simple and effective and doing it originally was what made me question my own language. I guess I know deep down why Personalisation and person centred planning need labels at this stage, but I hope we lose them soon. As with “inclusion” services appear to have grasped onto the jargon of personalisation but not really the concept and it feels like it’s just becoming another thing we do to people or they have to access.
Well rant over… It’s Friday, It’s been a long week and I’m looking forward to some inclusive leisure opportunities. I think I’ll access the community. Hopefully I’ll be able to access some refreshments too and have positive interactions with my peers. I’ll need to be supported to ensure my fluid intake isn’t too excessive or my behaviour may become challenging! …
Err, that’s go to the pub and have a drink with my friends to you and me.