A global movement

Self-advocacy is seen by many people with learning difficulties
as the cornerstone of their movement for civil rights. In the UK
there have been great strides, but questions remain over how to
ensure self-advocacy continues to go from strength to strength.
Janet Snell reports.

When more than 1,100 people from 64 countries gathered in
Melbourne, Australia, for the 13th World Congress of the disability
lobby Inclusion International, one of the key themes of the event
was self-advocacy.

The vast majority of those attending the conference this
September were people with learning difficulties. Many of them gave
presentations and their message to the conference was that
self-advocacy is one of their main routes to achieving equality and
self-determination.

The self-advocacy movement first gained strength in the US and
Sweden, finding its way to the UK in the early 1980s. Its path has
been a rocky one and, as with any civil rights movement, there have
been internal tensions. But there have been great strides too and
when the government launched Valuing People last year it was made
clear that self-advocacy was seen as one of the key building blocks
for delivering change.

Values Into Action is the national charity charged with
distributing the £1.3m of government money to be spent on
promoting self-advocacy for the three years up to 2004. But VIA
project manager Peter Dawson says a mention in the white paper was
just the start. People are already concerned over what was going to
happen when the current money runs out.

“Are all the new self-advocacy groups going to be left
high and dry?” he asks. “There have been some
indications from the Department of Health that they don’t
want that to happen but there are no guarantees yet and
that’s unsettling.” There is also anecdotal evidence
that in some places councils are pulling the plug on funding for
self-advocacy groups involved with the partnership boards on the
grounds that the DoH is making cash available.

Eve Rank, a member of the National Forum of people with learning
difficulties which advises government on the implementation of the
Valuing People white paper, says the question of funding is one
that needs to be addressed urgently.

“It’s no good government documents mentioning
self-advocacy in every other paragraph if the cash is not available
to enable groups to meet the increasing demands made of them.
Valuing People talks about self-advocacy, citizens advocacy and
formal advocacy, but there’s not enough money for any of
them.

“Self-advocacy should be a legal right and adequate
funding should be made compulsory. If local authorities were made
to spend a set amount of their money on self-advocacy then we could
really help bring about change.”

But Rob Grieg, director of the government’s learning
disability support team, stresses that the DoH does not see the
long-term funding of self-advocacy as part of its role. “We
accept that self-advocacy is the future – it’s got to
be. It’s also central for delivering Valuing People. But the
cash we have put up so far should be viewed as pump-priming
money”.

He added that one director of social services had told him that
he spent £16m a year on learning difficulties services but
only £26,000 on self-advocacy, which the director said could
not be right if social services were serious about empowering
people.

Grieg says: “He’s quite right. We can encourage and
support but if managers are not changing their behaviour and
organisations aren’t changing their culture, people with
learning difficulties will not be able to participate and
that’s no good.”

There are a growing number of self-advocacy organisations though
some have struggled to maintain momentum after their initial
launch. The DoH is planning to work more closely with self-advocacy
groups and others to come up with a framework on how strong and
effective advocacy can be developed locally.

Already established is the People First movement. In the past it
has not made the impact it might because of the disparate nature of
its many groups. In an attempt to address this, London People First
has secured a £200,000 lottery fund grant to set up an
independent national voice.

Andrew Lee, its director, says the new national People First
will attempt to build bridges and draw together the different local
groups which are at varying stages of development. “In the
self-advocacy movement people are not going to agree with each
other all the time. But if you say to them ‘who do you want
to make the choices – you or somebody else’, they would
say ‘me’. So we’re starting from that point and
trying to move forward.”

He added that in the past People First had been accused of being
too user-led. “That’s because we believe in people with
learning difficulties making their own decisions and sometimes that
means making their own mistakes.

“The bottom line is we want to speak independently. We
don’t want support staff making decisions for us, we
don’t want Mencap making our decisions, and we don’t
want professionals making decisions for us. We can do it
ourselves.”

The self-advocacy movement in the UK has diverged from those in
other countries in its somewhat “anti-parents” stance.
Parent-led organisations such as Rescare, which describes itself as
the National Society for Mentally Handicapped People in Residential
Care, initially campaigned to keep long-stay hospitals open. Now it
has changed tack and is calling for the hospital sites to be turned
into “village communities” for people with learning
difficulties, prompting vigorous opposition from self-advocacy
groups.

John Hersov, a consultant who supported the development of one
of the early self-advocacy groups, Camden People First, said some
parents groups felt marginalised by the move towards self-advocacy.
“They used to call the shots but now the pendulum has swung
the other way. The whole drive now is about letting people with
learning difficulties set their own agenda. They are the experts
and they are the people who should be running things.”

So self-advocacy is firmly on the agenda, the movement appears
to be going from strength to strength and people with learning
difficulties have a seat at the table, both nationally and locally,
where policies are made.

But there are still issues to be resolved about how to ensure
they can play a full part in the decision-making process says
Andrew Holman, who supports self-advocates on the National Forum.
“We need to look at how we reach groups such as people with
high support needs or those from ethnic minorities as they are
currently often left out of the loop. We need to be a bit more
imaginative over communication, cultural issues and how we make
information more accessible.

“But overall there are exciting changes afoot and people
with learning difficulties are taking control of their own
organisations in a user-led and campaigning way. The Melbourne
conference demonstrated this on a wide scale. The fact that so many
countries were represented by self-advocates is a huge shift and
shows that the international movement is finally coming of
age.”

What is self-advocacy?

Mark Brookes, a paid project worker for the charity Values Into
Action, is responsible for helping to promote self-advocacy
nationally. “Self-advocacy has been around for a while now
but you still get a lot of people asking what it is. It’s a
mixture of national campaigning and helping people on an individual
basis. Some people with learning difficulties are not given choice
over even the most basic areas of life like where they want to
live.

“Self-advocacy is about speaking up for yourself and
letting people know what you want in life rather than other people
speaking up for you. “But different people are at different
stages and some people with learning difficulties don’t know
how to speak up yet and that’s where citizen advocacy comes
in. They can speak on behalf of people with high support needs but
it’s important that they are sensitive and good listeners
otherwise it just won’t work. But even people with high
support needs are starting to say ‘I have my own views and I
have the right to express them’.”

“Safe havens where people can develop
confidence”

Andrew Lee, director of the new organisation People First
Self-Advocacy recalls a breakthrough for self-advocacy in
Hertfordshire.

When I first got involved in self-advocacy in 1994 I went along
to a meeting of North Hertfordshire People First. A group of people
with learning difficulties had been told they could not have their
own bank accounts. The banks would only deal with support
workers.

“So we wrote letters to all the banks asking about their
policy. The local newspaper ran an article about it and in the end
we got a formal apology from the bank. They backed down and allowed
people to have their own accounts.

“Self-advocacy groups are a safe haven which allow people
to develop their confidence. They allow people to confront issues
in their lives and provide an opportunity to join together and
campaign for change.”

“Such a lot to offer”

Lou Townson of Carlisle People First is a member of the
government’s task force and the National Forum of people with
learning difficulties that advises government on the implementation
of Valuing People.

“People with learning difficulties have been treated badly
over the years but we think self-advocacy has changed a lot of
people’s lives. It takes time for people to speak out. Some
are frightened to and keep their feelings to themselves. But once
you start you don’t look back.

“Some people are scared of change and they don’t
want it because they don’t know how to go about it. It helps
if you are involved in People First because then there are other
people that can support you.

“Self-advocacy groups like People First have made things
go a long way. Twenty or 30 years ago learning difficulties was a
phrase and it was a case of put them in hospital and forget about
them.

“We think everybody with learning difficulties has such a
lot to offer and can live the same life, and have just as fulfilled
a life as anyone who has not got a learning difficulty.”