Why enhancing, not diminishing the value accorded to people with learning disabilities must be our starting point

Unemployment amongst people with learning disabilities is far from inevitable.

In the State of Vermont USA, almost 40 per cent of adults with learning disabilities are in employment, paid at least the minimum wage, in the open labour market.   The backstory to this success involves the state closing down its sheltered workshops, where people were paid below the minimum wage, and redirecting the savings and other resources towards support to participate in the community, via direct payments, placing people with learning disabilities and their advocates in the driving seat, to spend on employment, training and other community support.  The minimum wage has proved no impediment to significantly increasing employment opportunities for people with learning disabilities.   Arguably it is central to this story of success, for it signals the equal worth attached to people with learning disabilities, without which real inclusion cannot hope to prosper.

In Britain, fewer than 2 in 10 adults with a learning disability are in paid employment. Among people receiving long term support from their council the figure is an appalling 5.8%.  There is zero evidence that this is a consequence of the national minimum wage, or its recent increase.   There is plenty of evidence that it is a product of low expectations, barriers experienced during common recruitment practices and a lack of often basic and cost free workplace adjustments. More appallingly, there is also evidence that these factors can be overcome through effective, personalised employment support of a sort that both local councils and the DWP continue to fail to invest in.  The recent Work, Health and Disability Green Paper holds little promise.

Of course the size of the learning disability employment gap, coupled with chronic under-investment in effective support has not stalled benefits reform, with ever increasing numbers of people with learning disabilities forced to survive on incomes that the European Committee on Social Rights has described as ‘manifestly inadequate’, while subject to ever more draconian, yet entirely unproductive conditionality and sanctions.   This is a system that robs people of agency and hope; where despondency sets in and becomes ever more difficult to escape.

I sense that the challenge of living on benefits, or for that matter on an income below the national minimum wage, was not front of mind when Rosa Monkton and Libby Purves wrote their respective articles. In response to criticism on Twitter Purves replied:

‘The problem you furious people have is thinking “worth” only means money. ‪@MoncktonR is talking of lives, happiness, reality.’

Of course it’s so much easier to say ‘worth’ doesn’t only mean money when your reality is one where you rarely if ever worry about having it.  Money might not bring happliness, but not having enough money to eat or pay the bills, let alone live any sort of life, certainly has a habit of getting in the way. Most people’s reality is day-to-day survival.   Lives, happiness and reality’ are ‘free to those who can afford it….very expensive to those who can’t.’*

One senses Monkton and Purves’ reality is somewhat removed from the majority. They argue that people with ‘serious’ learning disabilities need not be paid the minimum wage because ‘Most people involved, will be living with parents or in sheltered communities and have benefits help.’ That is to say, in their view, most people already lead a comfortable life, with all the money and support that need. Nothwithstanding the huge inaccuracy of this statement, it also shows utter disregard for people’s desire for financial independence, their own home, social status, a relationship and family of their own, a job that rewards them fairly….for, err, ‘lives, happiness…’  But then, the fact that Purves prays in aid the views on disabled peoples rights of Tory MP Philip Davies, presently to be found filibustering legislation to improve protection for women from domestic violence, reveals how devoid her outlook is of any commitment to equality and inclusion for people with learning disabilities.  

Monckton and Purves argue that demanding the minimum wage is ‘denying them (people with learning disabilities) the fulfilment of work by making them unaffordable.’ This is an astonishing statement for many reasons, not least that there is not a shred of evidence to support it, but particularly because it perpetuates the very foundations of prejudice and discrimination that lock people with learning disabilities out of the labour market and society more generally: low expectations. The act of employing a person with a learning disability is reduced to one of charity. They should not expect the minimum wage because they are worth even less than the minimum. They will be alright financially because their parents will look after them (until they die) and if not they can be looked after in ‘sheltered communities’ and live off £73 a week, which they don’t need anyway. In fact, according to Purves money doesn’t matter because ‘Some — not all — don’t quite understand money’ (translated: they lack the wherewithal to enjoy equal rights).

This ‘soft bigotry of low expectations’ often masquerades as care and compassion and through doing so masks the causes of injustice and inequality. We live in a country where the recently bereaved parents of adults with learning disabilities who have died are told by medical professionals that their death was ‘probably for the best,’ where local councils have no idea as to the employment status of a third of people with learning disabilities that they support, where a prime-time BBC programme shows people with learning disabilities being tortured in institutions and yet five years on just as many people are stuck in them.

This soft bigotry also clouds our judgment of the parents of people with learning disabilities. In her article Purves decried how ‘the voice of close experience gets shouted down by formulaic pieties.’ Yet accepting without question the views of parents about their adult children’s best interests is itself a manifestation of prejudice and inequality. Society sees only sacrifice and presumes only good intentions, even when parents are calling for their adult children to be legally regarded as worth less than everyone else.

In truth all parents are fallible and all parents are capable of prejudice about their own children’s capabilities and potential, whether disabled or not. As parents we can also project our own fears and insecurities onto our children in ways that limit them now and in the future. And as parents we are not isolated from the prevailing social attitudes around us, whether in relation to disability, gender or homosexuality for example.

Many parents are strong advocates of their adult children’s rights to equality and full participation, yet are often frustrated by a lack of resources, choice and opportunities. Others respond to these constraints by striving to replicate what they consider to be the protective shield of family life via a ‘custodian model’ of care. This has historically often involved people with learning disabilities being denied the right to self-determination, to live independently, to have relationships and a family and so on under the rubric of protecting their ‘best interests.’ In the past, many parents opted for the institutionalisation of their adult children with learning disabilities, sometimes for want of any other support but also sometimes out of shame and to evade stigma.   Monckton herself has been an opponent of moves from institutional care to community-based living, albeit under the banner of promoting ‘choice.’

Monckton is of course absolutely correct to identify the isolation, loneliness and lack of identity and purpose many people with learning disabilities continue to experience. In a seemingly hostile society, manufacturing alternatives to full inclusion can seem like the kindest response. But the successes in Vermont show that there is another path to overcoming these realities if we really want to take it.  Institutionalising inequality and low expectations will set us in the wrong direction.  According people with learning disabilities equal value, and raising our expectations, has to be the starting point.

*courtesy of Bruce Robinson, from ‘Withnail and I’

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