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.
Strikes a chord…. actually it’s a whole symphony. So so true.
Ha ha, thanks, it’s one of my major bug bears!!
Exactly. Seems a new phenomenon.
not sure I think it’s always been there or maybe we’re just noticing it more x
Interesting one. I totally agree with you as a disabled person & parent of disabled children. I also work for a disabled people’s organisation campaigning for rights and equality etc. and this does make me think if we are guilty of colluding with this. For a long time disabled people have argued to be treated as individuals and to have the right to go to the pub, shops, cinema, college, swimming pool, clubs, restaurants etc etc as everyone else and that to do this certain aspects of the environment would need be changed as well as changes in attitudes and expectations of many people and the changing of systems such as social care and benefits etc. I guess over the years in order for people to move towards the object of considering people as individuals who have a right to choose what they want to do and how and when they get the right support to do it we have used terms such as ‘inclusion’, ‘accessing the community’ and ‘personalisation’ because we have had to use some form of general language as, by the very nature of what we all want, all these things are different for different people in different circumstances. I do agree that most of this language is dreadful when used in the context of talking about an individual and their family. I hope I have made some sense and not waffled too much. I think it’s really important issue that should receive much more attention and debate
I think we do it without thinking and all get sucked into it. We voice the values of inclusion then use non inclusive language that segregates. i.e. the intention is good and the thoughts behind it right but language still alienates
Indeed, but definitely food for thought. Thanks for raising the issue.
you are very welcome x
You’re right – but gradually we get better at the lingo than the professionals and then we feel we have a chance of winning!
Mmm! I guess so but maybe by becoming better we reinforce it. I’d rather we all lost it altogether, then maybe our kids would win!
Loved this – my son is only 20 months so we haven’t had such a plethora of terms yet – the current fave amoungst our professionals is high functioning – which makes my son sound rather like a stereo system!!!
thanks, yes I’d forgotten about that one…never used for G. we used to get “developmentally delayed” Delayed always sounded as though he’d eventually “get there” and “low incidence, high support” was often a term used!?! It’s so easy to get sucked into service speak but, we shouldn’t lose sight of the real person in all the labels.as your son’s only 20 mths hopefully things will have changed by the time he becomes an adult…or maybe they’ll have come up with new ones!! x
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