Grassroots charity promoting the right for people with learning disabilities to have a choice about how they live their lives

Labels for people with learning disabilities

12
Jun
2017

This was going to be an article I wanted to write about the use of labels for people with learning disabilities and how we are part of the movement of people who want to lose (and challenge) de-humanising terms.

Since my previous article about the importance of writing things in the diary (and how this brought Heavy Load’s re-union plans crashing down) I’ve had a good number of supportive comments from people sadly experiencing the same issues. It’s like going back to the days when the Stay Up Late campaign started. Wondering if we were alone in this and then finding there was a terrible endemic problem.

I also had one negative comment from someone who took issue with the tone of my piece and commented.

“It all boils down to listening to clients, even if they say no!”

I’d tried to make it clear in my post that I always try and respect and individuals’ choice, that’s what our charity’s overall mission in life is afterall, but that you can’t uphold someone’s choice if you don't support them to manage their lives and give them the information needed to manage their friendships and relationships.

I also thought the comment was interesting in the use of the word ‘client’. It's an often used word in social care but if you look at the definition it seems that we’ve really turned the meaning on it’s head:

“Client – a person using the services of a lawyer, architect, social worker or other professional person”

This definition implies that the client has engaged the services of that person and therefore presumably would have power in deciding what service they wanted or needed.

This got me thinking that a post about our use of language and labels could be useful and I started doing a bit of research on the Facebook Group to find out what terms you all liked and loathed.

Then the lovely Jo Giles, also a Gig Buddies volunteer, offered this article on the subject which is fantastic. Not only does she hit the nail on the head for me, but she’s also saved me a load of work! Take it away Jo...!

Labels for people with learning disabilities

Thoughts on labels for people with learning disabilities

Okay I might need to rant here as this is something I feel very passionately about.

This post is needed. Much needed. We use words sometimes and we don’t really think through their impact. Sometimes this is because we haven’t opened our eyes, our brains to think of the impact and sometimes it is because we have become part of a system in which we forget to think for ourselves and question- where we accept what is used because, well, ….. that must be right?! We forget to really consider about how words touch people, how they make people feel and how they make people act. They can give people power or they can take it away - sometimes dramatically for all to see; sometimes subtly and silently.

People use words like ‘customers’, ‘service users’, ’them, ‘members’, ’the guys’, PLD, and PWS. I don’t like these. Other sectors use some of these words too. That still doesn’t make it okay for me. I think when we use the words ‘the guys’, ‘service users’ etc, it creates a separation, or somehow a patronising feel with even a dehumanising aspect.

We need to flip this on its head whenever we can to stop this happening. The words we use are an opportunity to do this. Why not use the person’s name or, next best, ‘person/people I support’ (in full) and if needed, in certain contexts, people with learning disabilities (if that additional description is required).

We need to use the words that remind us and others that we are all equal and we have equal rights to Gr8 support, and good lives.

We work in a sector where sometimes, horrendously and very sadly, people are dehumanised in the support they get and the way they are treated - where there is a history of horrendous de-humanisation and treatment. And this still goes on. (See the latest awful account of the abuses by The Atlas Project Team in Devon).

The recent documentaries on ‘St Andrews’ and on ‘Winterbourne’ and the reports ‘Death By Indifference’ and then the follow up ’74 Deaths and Counting’ are the horrendous high profile stories but this dehumanisation happens on a daily basis. On buses in public, with school children, in assessment and treatment ‘hospitals’ and from support workers who shouldn’t be support workers.

Open our eyes and question

We need to open our eyes and question. We need to be careful with our language and how it empowers and disempowers and make sure that we are using the right language. We shouldn’t create more of ‘us and them’ because actually we are all in this world together and all equal. The only difference is in this situation is that someone is being supported and someone is giving support- but even within this, things are two way….it’s not so simple.

We need to, I believe, at every given opportunity use the person’s name or say something like ‘person I support’ so it is respectful and reminds us and others that we are ALL people and ALL equal. Whether you are John, Ije, Sarah, Jo, Olive or Ahmed. We are all equal and we all deserve and want to be treated with respected and equal.

We need to be the ones who lead the way in this, not wait for others to catch on but remind, challenge and lead by example. Lead by our own actions and strong beliefs…..if we don’t we create a space and vacuum for bad treatment and support- and a value system that isn’t what it could be and one that I don’t want to be part of.

This is about power

Words are powerful and we need to make sure we choose the right power – positive, empowering, respectful power.

“But if thought corrupts language, language can also corrupt thought.” ― George Orwell1984

 

 

“There is something about words. In expert hands, manipulated deftly, they take you prisoner. Wind themselves around your limbs like spider silk, and when you are so enthralled you cannot move, they pierce your skin, enter your blood, numb your thoughts. Inside you they work their magic.”
― Diane SetterfieldThe Thirteenth Tale

 

And don’t get me started on the use of the words ‘Oh that’s just pc/political correctness!' It's not, that is just an excuse to be unempathetic, judgemental and remain ‘blinkered’ to impact of your/others’ words.

Thoughts from the Stay Up Late team

Thanks to Jo for taking the time to write this much needed article and to hopefully get some more debate going about our use of language, and the control it can have over people, and the way we think.

This morning at our team meeting we had a good discussion about the way we refer to the people we work with.

Commonly we use the term ‘participants’ or ‘our participants’. As a result we’re committing to try and just use ‘Gig Buddy’ and ‘The People We Work With’. But we’re also going to ask The Storm and Thunder Team what they like, and how these words make them feel too.

And a final comment on acronymns

We don’t think there’s any place for acronyms in our work at all. Terms such as ‘LD’, ‘PMLD’, ‘PWS’, ‘SUs’ etc just serve to de-humanise and create a clinical approach.

And let’s not blame Twitter’s 140 characters either.

Let’s be disciplined about this and let’s not reduce peoples’ humanity to a label, term or acronym.

Your thoughts?

Do you have different views on the use of labels for people with learning disabilities?

Perhaps you feel that the use of labels is helpful in enabling you to make sense of the world that you're working in. We'd love to hear your thoughts.

  • Jo Clare

    Hi Jo and Paul and everyone at Staying Up Late. Agree with lots of what you say and admire the good intentions behind it. In my work, I try to match names, roles and relationships to go with different contexts and situations. Ahmed might be referred to as Ahmed, a flatmate, a tenant, an employee, a customer, a fellow Arsenal fan, an award winner, a citizen, a voter, a Trustee – depending on what context I am talking to or about Ahmed. For me, it is about using ordinary language, acknowledging a diversity of roles, using language that is both valorising, valuing and honest. But there are times I use some of the terms on your bad list, which I agree are imperfect – but you have not convinced me yet that you have found better alternatives. For example, I don’t buy that saying people we work with is automatically better than saying people we support. It depends entirely on the context. At my organisation, we work with people sometimes (they get paid or volunteer, and we work together) and we sometimes support people (to organise, make friends, get a job). So we might say people we work with or people we support, depending entirely on the context. I don’t see any virtue in masking support and passing it off as working with, if it’s not. As someone who both gives and gets support myself, the word ‘support’ is not automatically charged with negative or unequal ions. I agree though that referring to people WE support is possessive, clumsy and we could do better. The hunt continues…! Well done ‘yous lot’ for starting the debate off again…

    • MrBassMan43

      Hi Jo – I totally agree and didn’t explain why we at Stay Up Late opted for ‘people we work with’ – and that’s simply because we don’t actually support anyone in an official supporting way, so we felt that reflected our role best. But do totally agree with what you say and the problem is that as soon as we find a word/words that works it can easily become corrupted through clumsy use. (Or acronymised!). As I always say, I’m not sure we have many answers but we’ve always got questions!!

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