Re-read the labels

Welfare categories, such as “learning disabilities” and “learning
difficulties”, have always better served the bureaucratic systems
that created them rather than the people they label. Anyone who has
ever had difficulties at school can empathise with an idea like
“learning difficulties”. But this is not the main meaning attached
to the term. Instead, it has just become the latest expression for
much older, grimmer poor-law categories, such as “imbecile”,
“idiot” and “moron”.

Welfare bureaucracies have difficulties with people they cannot fit
tidily into one of their pigeonholes but who instead cross over
into others. Whether it is a disabled person with experience of
mental health services or where “child protection issues” are
coupled with disability or mental distress, people can expect
problems.

Social services, which have seen reorganisation as the solution to
everything, do not yet seem to have learned that wholesale changes
redistribute people between services rather than overcome the
problems that bureaucratic categories create.

More problems are introduced when children and young people are
concerned because childhood has been recast as an additional
administrative category and because there are few equivalents of
“spent offences” in welfare. Segregations and stigma established in
childhood are likely to do lifelong damage to service users – and
indeed to the rest of us.

The high proportion of children and young people with learning
difficulties who have been diagnosed with mental health problems is
now recognised as a problem. It is worrying, though, that the wrong
problem may be identified and that the resulting remedy – the
increasing use of psychiatric services for people with learning
difficulties – will make things worse rather than better.

Complex hierarchies operate in health and social care according to
who you are and what is seen to be wrong with you. These
hierarchies rarely privilege people perceived as having learning
difficulties – they tend to come bottom of the service pile. We
have to ask serious questions about the merits of attaching
additional labels to them.

Services are too ready to interpret the behaviour of people with
learning difficulties as part of their problem. A child who is
lonely or has family problems or has suffered a bereavement may be
thought of by service workers as having mental health needs rather
than needing someone to talk to. Behaviour of people with learning
difficulties, particularly around adolescence, may come to be seen
as “challenging” and part of their “syndrome”, rather than as part
of growing up. More people with learning difficulties are being
sent to psychiatric services, which often don’t welcome them, and
routinely being prescribed drugs. Ask members of the psychiatric
system survivor movement what they think: few would recommend
setting any child on this path.

But there is also another emerging issue: the blurring of the
helpful distinction between mental health and learning difficulties
established over recent years. This has been happening with the
increasing identification of children with “non-specific learning
difficulties” and of “developmental delay”, who are also diagnosed
as “autistic”. Categories such as “the autistic spectrum”,
“Asperger’s syndrome” and “high functioning autistics” are taking
people into the psychiatric domain.

The system pushes people into thinking that accepting additional
labelling will help them obtain what they want, as service users
and supporters. But what about the stigma and separation that
result? Why should we expect pushing people into the psychiatric
system will help?

Kathy Boxall, of Manchester University’s learning disabilities
studies course, poses a key question: “Learning difficulty services
are getting better at recognising that labelling people as having a
‘learning difficulty’ is not necessarily advantageous. There is an
increasing trend towards people using mainstream services rather
than specialist learning difficulties services or facilities. Why
do we want to shunt people off to specialist psychiatric services
rather than support them in the mainstream?”

People First’s long-standing slogan, “Label Jars Not People”, still
holds true. So long as people are included in welfare categories,
we must work to make sense of them. We should not confine ourselves
to attaching less oppressive labels to them. One of the crucial
tasks every effective movement has embarked upon is to challenge
and reclaim outsiders’ definitions of their identities. This is a
key task for which people identified as having “learning
difficulties” have a right to expect support.

Peter Beresford is professor of social policy, Brunel
University, and is involved in the psychiatric system survivor
movement.