Labels

Let’s talk labels. At this time of year, there are lots around. Labels glued to boxes containing purchases made online. Labels taped to packages and sent off in the post. Labels tied to presents underneath the tree. Labels attached to jars of mincemeat and chutneys and jams. Labels fixed to suitcases as people travel home, or away, for Christmas.

And so it should be. Labels are for parcels and gifts. Jars and suitcases. They describe a destination, explain what’s inside. They are attached. They stick.

But in social care, our labels are for people. Service user. Case. Customer. Client. Self-funder. Full-fee payer. Carer. Cared-for. Expert by experience. Referral. Inappropriate referral. Challenging. Difficult. Complex. Vulnerable. Frail. LD. PD. Eligible. Not eligible. Non-compliant. Resistant. Avoidable admission. Bed-blocker. Frequent flyer. Optimized. Activated.

And like labels on parcels and gifts and jars and suitcases, our social care labels also describe a destination and explain what’s inside. We attach them. And they stick.

Labels open doors

“The search for an accurate diagnosis takes over your life, ultimately knowing that if you have a name for what is wrong, this will give you the passport to the support and services that you need.”

Caroline Tomlinson [1]

People usually require a label (eligible, vulnerable, at risk…) to enter our social care world. And once they’re in, our labels define their ‘journey’. We rely on these labels. Indeed we use them to structure our services and to name our teams (Older Adults, Learning Disability Team, Complex Needs Team..). Without them we’re not quite sure which pathway to direct people down, or where to refer them next.

Labels help us process people quickly. They’re a handle (literally) we use to pick people (cases) up and move them around our system. Sometimes we add a priority label too – sending people off down a pre-determined pathway, or on to the next stage in a workflow with a rating, a flag, a red/amber/green or a high/medium/low attached.

Individuals and families seeking support learn to adopt our labels too – fully aware that certain terms guarantee entry to ‘the system’. A mum (‘carer’) recently described using the phrase ‘complex needs’ in relation to her son because she recognised it as a  “gateway term” and a “magic word”. A way in.

 “if you don’t use ‘their language’ on those meetings it makes it more difficult to get support. I regularly use/d language I hate because it has a sort of hyper-functionality.”

Katherine Runswick-Cole [2]

Labels close minds

While labels may open doors, they also close minds.

Often we see, and even apply, a label before we’ve even met the person. And in doing so we attach all our associations and assumptions, and have our standard set of service solutions (4 calls a day, respite, day services, resi) at the ready to fix the problem and meet the need. Then we attach yet another label, describing the person (‘referral’) as the next stage in our workflow or as the service we’re about to prescribe: a safeguarding, a res care, a DOLS, a DST.

When people are given multiple labels, we refer them to multiple teams or organisations. And each of those teams and organisations see the part of the person with the label that matches the name above their door: the need, the problem, the risk, the diagnosis, the condition. Each service screens and assesses according to their entry criteria, and the person gives the same answers to the same questions over and over again. Each team or organisation fixes, treats, manages or maintains a part. Few, if any, see the whole.

“Each service may spend large amounts on ‘supporting’ the individual, but each is focused on a single set of needs, none able to see all the needs, let alone the whole person.”

Alex Fox [3]

And if we struggle to find the right label(s), inevitably we can’t quite fit people into an obvious box, so we attach some alternative labels to excuse our failings. Complex. Difficult. Inappropriate referral.

Labels shape identity

“All of these words, all of the nos, all of the labels – the boxes I was put in – became a part of what I believed about myself, what I believed I was capable of, what I believed I could and couldn’t do. I became those labels, those words, those NOs. I became small and weak and frail as I withdrew inward, into the shell of my former self.”

Joletta Belton [4]

In her book ‘Radical help’, Hilary Cottam mentions Olive. She suggests that Olive originally gained the label ‘housebound’ from a visiting social worker “whose job it is to assess the allocation of services”. The social worker applied the label to ensure Olive received some support rather than none, and “Olive felt she must describe herself this way to keep the help she genuinely needed”.

While we may talk more and more about personalised, ‘strengths-based’ approaches, the generic labels that emphasise what people can’t do and what’s wrong remain the ones we apply and the ones that guarantee support.

“What you can’t know unless you have #disability is how all the paperwork chips away at your soul. Every box you tick, every sentence about your “impairment” and “needs” becomes part of the narrative of your identity…”

Gill Loomas [5]

Labels also shape the identity of those who attach them. Assessor. Case coordinator. Care manager. Care navigator. Key worker. These ‘professional’ labels all suggest ‘doing to’ – reinforcing a power dynamic and leaving no doubt about who really makes the decisions and who is really in control.

Labels dehumanise

As well as shaping identity, labels also deny identity.

By attaching labels like service user, customer and case, we’re identifying people not by any of the elements that makes them unique (and human), but by a single factor that makes them the same (and just a little less than human).

These labels also add that bit of distance. Suggest that bit of difference. Dehumanise.

Some time ago, following my suggestion that we describe people as – well – people, a colleague told me that first she’d been told to refer to service users not clients, and now I was asking her to say people instead of service users, and in a few years’ time we’d probably find some other term to use instead of people. At the time I was a bit stunned by this. But reflecting on it now, I think it’s an indication of that innate desire to separate and group and distance. The assessor and the assessed. The provider and the consumer. The carer and the cared for. ‘Us’ and ‘them’.

We don’t just dehumanise people, we dehumanise what people do too. In social care, people don’t live in homes, they live in accommodation. Schemes. Settings. Placements. Beds. Units. They don’t have a wash, brush their teeth and get dressed – they have personal care. Going to the toilet becomes toileting. Eating is maintaining nutrition. Walking is mobilising. Going out is accessing the community. Going to work is accessing employment. Meeting your mates becomes maintaining relationships. Going swimming is engaging in physical activity.

In the real world we’d describe all of these things as just getting on with our lives, but in social care service land, these ‘activities of daily living’ demonstrate that people are ‘maintaining their independence’ and ‘achieving their outcomes’.

Labels blame

You over there. You’re not just different, separate, not quite human. You’re wrong. You’ve failed. It’s your fault. Nothing to do with us.

You didn’t meet our entry criteria (we chose not to let you in). You weren’t in when we called round (at the time that suited us). You didn’t reply to our letter (that we assumed you received, and could read and understand). You wouldn’t answer our questions (about what’s wrong with you). You wouldn’t listen (to our solutions). You didn’t read our leaflet (about what will happen next on your customer journey). You failed to follow our rules (about your direct payment). You didn’t tell us you weren’t happy with our service (we didn’t ask you if you were).

Not responding. Not engaging. Not complying. Not communicating in a way we can understand. Not behaving in an appropriate way. Not vulnerable enough. Too vulnerable. Not ticking the right box. Ticking too many boxes. Not fitting neatly in to any service. Not doing what we want you to do.

Not eligible. Non-compliant. Hard to reach. Challenging. Difficult. Inappropriate.

How quickly we apportion blame in the labels we use. How quickly we walk away. Nothing to do with us.

Seeing, and being, the person, not the label

As this very small snapshot of all the academic literature on the subject shows, the search for the perfect ‘label’ has spanned both decades and continents. There have been numerous surveys and much speculation and debate about the “preferred terms for labelling individuals” in health and social care, and “what do we call ‘them’?” remains an unresolved question.

But it’s the wrong question.

We don’t need to change the labels. We need to remove them. But we can only do that by radically rewriting social care.

Like sorting offices and baggage handling systems, we rely on labels – precisely because we operate a similar system of screening and sorting and prioritising and processing. We use labels to decide on eligibility, determine pathways and prescribe services. We use labels to distance ourselves from the reality of people’s lives, to help us justify the way we ‘deal with’ people like parcels and suitcases. And we use labels to blame, to shield us from the reality of our collective, institutional failures.

So let’s think back to those labels on Christmas gifts. We don’t write vulnerable, or user, or challenging, or complex, or case. We write people’s names. Or mum. Dad. Granny. Uncle. We attach labels to presents for our daughters, sons, sisters, aunties, grandpas, nephews, granddaughters, friends, neighbours, colleagues… People who matter. People we care about. People we love.

People.

These labels reflect our relationships. How we identify the people close to us. Too often in social care we apply, see and become labels because we’re too far removed – physically, emotionally, usually both – from people in the context of their families and their communities and their whole lives.

 “Because that’s what we’re talking about. People. Relationships. Families. Normal stuff. Any other label distances and sets up a “different from the rest of us” dynamic that is not useful.”

Mark Neary [6]

For too long in adult social care we’ve focused on what people can’t do: what they struggle with; the challenges they face; the needs they have; the boxes they tick. If we’re serious about achieving a better, brighter social care future, we need to stop focusing on labels, and concentrate instead on gifts. On seeing and valuing gifts: who people are, and want to be. What they can do, could do, want to do next. What matters. And on giving our own gifts. Time. Compassion. Dignity. Respect. Honesty. Trust. Humility. Humanity.

By shifting our conversations to focus on what matters, and on thriving and not just surviving, we see humans not widgets. Unique individuals with passions and desires and aspirations. We reclaim our identity as humans not robots. And ultimately we reframe social care: removing the labels of crisis and cost and problems and vulnerable ‘others’, and telling a very different story. A story of hope. A story about people. A story about all of us.


 ‘I am not a client, a customer, nor a service user. I am not a shirker, a scrounger, a beggar nor a thief.

I’m not a National Insurance number, nor a blip on a screen. I paid my dues, never a penny short, and was proud to do so. I don’t tug the forelock but look my neighbour in the eye and help him if I can. I don’t accept or seek charity.

My name is Daniel Blake, I am a man, not a dog. As such, I demand my rights. I demand you treat me with respect.

I, Daniel Blake, am a citizen, nothing more and nothing less. Thank you.’

Daniel Blake [7]

References

[1] Quoted in A new health and care system, Alex Fox, 2018

[2] If you don’t use their language…, Katherine Runswick-Cole, Twitter, 2019

[3] A new health and care system, Alex Fox, 2018

[4] It’s words that I remember – language matters, Joletta Belton, 2018

[5] What you can’t know…, Gill Loomes, Twitter, 2018

[6] Paraphrasing Princess Di, Mark Neary, Love, Belief and Balls, 2015

[7] ‘I, Daniel Blake’ [Film], Ken Loach, 2016

2 thoughts on “Labels

  1. For 42 years myself and my late husband have refused to use labels to identify people. Particularly the medical label Downs Syndrome.
    On co founding Wigan Link 30 years ago to give people a choice in where they lived , who they lived with and what support they needed we insisted on removing labels. We were constantly asked – but what do you call them?
    Our reply – their names , people
    It works
    My husband always said
    “Inclusion is not a model it’s a right” Norman Welch
    And “ acceptance is the answer”
    It is heartening to read this piece this morning but it just confirms that there are others who agree with our long held philosophy.
    Thank you

    Liked by 1 person

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