Love shows up: past, present, future

“Love is a central feature of family life and yet remains invisible in health and social care services, practice and research. Where is the love? And why is this word erased in the professional arena?”

Sara Ryan [1]

“It was love’s absence that let me know how much love mattered.”

bell hooks [2]

Last Friday I took part in ‘Love shows up’ – a love and hope fuelled event at Camden Council organised by the brilliant Becca Dove and Tim Fisher, exploring and celebrating the role of love in public services.

I was part of a conversation circle on the theme of ‘past, present, future’. It was a real privilege to be invited to share the space, and it gave me an opportunity to reflect on how our language and attitudes have evolved over time, and what our words reveal about the presence – and absence – of love and relationships in our legislation and our practice.

This blog post was prompted by that day.

And this day ❤️

Past

‘On the towpath we met & had to pass a long line of imbeciles. The first was a very tall man, just queer enough to look at twice, but no more; the second shuffled, & looked aside; and then one realised that everyone in that long line was a miserable ineffective shuffling idiotic creature with no forehead, or no chin, & an imbecile grin, or a wild suspicious stare. It was perfectly horrible. They should certainly be killed.’

Virginia Woolf [3]

Just over a century ago, the new Mental Deficiency Act 1913 aimed ‘to make further and better provision for the care of Feeble-minded and other Mentally Defective Persons.’ The Act – which replaced the Idiots Act 1886 – included a ‘definition of defectives’, listing classifications of ‘idiots’, ‘imbeciles’, ‘feeble-minded persons’ and ‘moral imbeciles’.[4]

The Mental Deficiency Act stated that “a person who is a defective may be dealt with under this Act by being sent to or placed in an institution for defectives or placed under guardianship…” [5]

Dealt with. Sent to. Placed.

Separated.

Removed from public life.

‘They’ don’t belong here, with ‘us’.

Indeed, the term ‘idiot’ derives from the Greek idiōtēs meaning “a person not in the public eye” and ‘imbecile’ is borrowed from the Latin imbēcillus, meaning “deficient in power”. [6]

Two years later, Virginia Woolf wrote in her diary of the ‘long line of imbeciles’ who ‘should certainly be killed’. And around the same time, the Eugenics Education Society was founded. “The Society’s records show an overriding concern to prevent those people who were deemed ‘feeble-minded’, ‘degenerate’ or ‘mentally defective’ not just from ‘overbreeding’ but from reproducing at all. Such disparaging terms for people with chromosomal disorders and learning disabilities were then used routinely by scientists, health professionals, educators and social workers, who grouped them with other ‘problem’ people”. [7]

Then, 75 years ago, “in the same year as the NHS began to great fanfare, its sister legislation, the National Assistance Act quietly slid onto the statute book.” [8] The National Assistance Act 1948 gave local authorities the power to make “welfare arrangements for blind, deaf, dumb and crippled persons” [9] – “which was to underpin the core definition of disability for the purposes of community care law for the next 66 years”. [10]

The Act introduced a “duty of every local authority… to provide residential accommodation for persons who by reason of age, infirmity or any other circumstances are in need of care and attention which is not otherwise available to them” [11], and “also placed a legal duty on councils to recover payments from a person provided with residential accommodation and to assess their ability to pay if they were unable to pay the full cost.” [12]

And so, the classification of ‘others’ was written into law, legitimising and perpetuating the associated notions of ‘helplessness’ and ‘dependency’. “Rather than being seen as individuals, people were categorised into groups and given labels that enshrined their dependent status: ‘unemployed’, ‘single parent’, ‘handicapped’.” [13]

Not only that, but the language and regime of assessment and means-testing and segregation was also established – firmly embedding judgements about ‘eligibility’ and ‘entitlement’ into practice and locating power and control over people’s lives and people’s futures in the hands of ‘professionals’ and institutions.

Who’s in, who’s out? Who qualifies, who doesn’t? Who stays, who goes?

Who do we not save?

And yet as early as 1946, Sir William Beveridge – architect of the Welfare State – had become concerned “that he had both missed and limited the power of the citizen and of communities… he was increasingly aware that communities rather than distant, cold and hierarchical institutions, are often much better at identifying needs and designing solutions. Beveridge had designed people and their relationships out of the welfare state. He realised too late that he had made a mistake.” [14]

Present

“I’ve been constantly fascinated by the ability of social care to reinvent it’s language but never its values”.

Mark Neary [15]

Language evolves. There are words that undoubtedly belong in the past, and – largely, though not entirely – remain in the past. Words like ‘cripple’. ‘Handicapped’. ‘Retarded’. ‘Feeble-minded’. ‘Lunatic’. ‘Spastic’. ‘Moron’. ‘Idiot’.

Language evolves, but many of those attitudes and practices of the past still pervade. The labelling and classification of people remains a “constant drag that means we never get beyond consideration of ‘them’ and ‘us’”.[16]

We’ve merely replaced old labels with new ones.

‘The vulnerable’.

‘Those with care and support needs.’

‘The cared for’.

‘Cases’.

Them, not us.

And the gatekeeping regime and associated power dynamics also remain firmly in place.

“Systems that exclude by design or default are extremely expensive… As resources have declined and the costs of fixing have risen, our welfare systems have responded with the design of ever more labyrinthine pathways and ‘personalised’ assessment measures as they try to ration their resources and displace the costs elsewhere. The result is an ever faster, more dispiriting version of pass-the-parcel.”

Hilary Cottam [17]

“Pass-the-parcel” tasks and transactions define and dominate our practice. Our vocabulary demonstrates our obsession with process: ‘screen’, ‘triage’, ‘assess’, ‘refer’, ‘place’, ‘review’. “The welfare state has been reshaped as a service industry.” [18] So, in addition to the ‘othering’ labels we attach, we view people as consumers (‘customers’, ‘clients’, ‘service users’) and, despite the shift in the Care Act to ‘meeting needs’, our business is still one of service provision.

And we focus obsessively on ‘independence’, and on ‘reabling’ people to “regain or retain skills to enable them to manage with minimal or no support” [19]. This ableist narrative overlooks the overall aims of ‘independent living’ – equal rights, choice and control, inclusion, participation. It perpetuates instead notions of self-sufficiency and individualism that deny the vital role of relationships and community, and the reality of inter-dependency and reciprocity, that characterise genuinely flourishing lives.

As such, people’s basic human needs and desires for love and connection are largely ignored in care and support plans and ‘packages’ that focus on meeting ‘personal care needs’ and keeping people alive – not offering or sustaining reasons to live.

And exhausted, frustrated families driven by “love, overwhelming love” [20] are labelled ‘angry’ and ‘difficult’ for fighting to be listened to. Fighting to be heard and understood. Fighting for the right support for the people they love – and for themselves.

Indeed, battles and fights dominate our practice, and the language of war is ever present. We work on the ‘front line’. We have ‘duty’ teams. We are ‘officers’. We are ‘armies’. We are ‘heroes’.

Our language is defensive. We’re quick to blame. ‘Vulnerable’. ‘Challenging’. ‘Complex’. ‘Hard to reach’. ‘Refuses to engage’.

‘We’ fight ‘them’.

Relationships are still largely absent. Designed out, not in.

We still build too many walls, and not enough bridges.

Future

“Awakening to love can only happen as we let go of our obsession with power and domination.”

bell hooks [21]

Our future vocabulary should be brimming with love.

A narrative with no labels. Devoid of jargon. Without blame.

A language of hope. Connection. Belonging. Opportunity. Possibility. Of ‘gloriously ordinary lives’. Of ‘flourishing’. Of ‘communities where we look out for one another’.

This language was delightfully abundant in Camden last Friday. And of course, it is the language of the recent House of Lords Adult Social Care Committee report [22], the Archbishops’ Commission on Reimaging Care report [23], and the Social Care Future vision [24].

Love is starting to show up.

But.

(And apologies for throwing in an element of caution – but it matters).

There is a danger that a focus on love and relationships without associated funding – and devolution of power – shifts ever more unsustainable responsibility towards individuals and families and communities.

“Intentions to put “love for children and families at the heart of our care system” are well meant. But the sector doesn’t need more empty promises of “love” (which, when used in isolation, seems to be a euphemism for “cheap”). It needs urgent investment, in all areas, from children with special educational needs and disabilities to mental health services.”

Rebekah Pierre [25]

It’s no use if love features in our language but doesn’t translate into action.

No one needs more empty promises.

And so, to genuinely ensure that love shows up in our social care future, we need to make sure that relationships are embedded at every level. And this means a radical shift in policy and in practice.

Instead of separation and blame, we need to promote inclusion and belonging.

Instead of independence and self-sufficiency, we need to promote interdependence and reciprocity.

Instead of ‘entitlement’ and ‘eligibility’, we need to promote human rights and social justice.

“Love is at the heart of care. It is why we care… But to speak of ‘love’ can be a loose concept; the Christian approach to ‘love’ is rooted deeply in the Jewish idea of ‘loving kindness’, or hesed. It is about an attitude that is oriented towards the good and flourishing of the other. It is a primarily relational concept. It is not simply used as a one-off act of kindness. Loving kindness is therefore not simply a choice but an obligation to act with justice and kindness towards others over time… Loving kindness is a call to wider society to be organised for the long term flourishing of every person.”

Archbishops’ Commission on Reimaging Care [26]

It’s never just about words.

To love is to act.

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References

[1] Love, learning disabilities and pockets of brilliance, Sara Ryan, Jessica Kingsley Publishers, 2021

[2] All About Love: New Visions – Love Song to the Nation 1, bell hooks, Harper Collins, 2016

[3] Need, not diagnosis: Towards a more realistic language and understanding. The Michael Lewis Inaugural Lecture, Stephen Unwin, 2 July 2022

[4] Mental Deficiency Act 1913

[5] Mental Deficiency Act 1913

[6] Idiot, Merriam-Webster.com Dictionary
Imbecile Merriam-Webster.com Dictionary

[7] Eugenics in Britain, English Heritage

[8] Ending the social care crisis: a new road to reform, Richard Humphries, Policy Press, 2022

[9] National Assistance Act 1948

[10] Ending the social care crisis: a new road to reform, Richard Humphries, Policy Press, 2022

[11] National Assistance Act 1948

[12] Ending the social care crisis: a new road to reform, Richard Humphries, Policy Press, 2022

[13] John Moore, Minister for Health and Social Services, 1988 – quoted in ‘The politics of disablement’, Michael Oliver, Macmillan, 1990

[14] Radical help, Hilary Cottam, Virago, 2018

[15] The words on the tin Mark Neary, 2 December 2018

[16] Love, learning disabilities and pockets of brilliance, Sara Ryan, Jessica Kingsley Publishers, 2021

[17] Welfare 5.0: Why we need a social revolution and how to make it happen, Hilary Cottam, UCL Institute for Innovation and Public Purpose, September 2020

[18] Radical help, Hilary Cottam, Virago, 2018

[19] Reablement: a guide for carers and family, Social Care Institute for Excellence (SCIE)

[20] Need, not diagnosis: Towards a more realistic language and understanding. The Michael Lewis Inaugural Lecture, Stephen Unwin, 2 July 2022

[21] All About Love: New Visions – Love Song to the Nation 1, bell hooks, Harper Collins, 2016

[22] House of Lords – A “gloriously ordinary life’’: spotlight on adult social care, Adult Social Care Committee, 8 December 2022

[23] Care and Support Reimagined: a National Care Covenant For England, Archbishops’ Commission on Reimaging Care, January 2023

[24] Social Care Future

[25] You can’t raise children on the cheap, so why is this government set on doing so?, Rebekah Pierre, The Guardian, 2 February 2023

[26] Care and Support Reimagined: a National Care Covenant For England, Archbishops’ Commission on Reimaging Care, January 2023