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opinion

How inclusive is the learning disability community?

Could self-advocates do more to include people with profound
and multiple learning disabilities and be more realistic about
what they can achieve? ask Clare Palmer and Virginia Bovell

he self-advocacy movement, with too often been seen as an obstacle to
its aims of promoting independence rather than a critical cog in
Tindependence and choice, inclusion the wheel of belonging.”
and better opportunities for people with
learning disabilities, is hugely valuable. Greeted with suspicion
We applaud its achievements There is a long history of family advocacy
wholeheartedly. However, major that has led to progressive developments.
challenges must be addressed if it is to Yet we are still often met with suspicion. Some people can make healthy choices – but
include people with profound and For example, we recently found Virginia Bovell’s son Danny likes food that would
multiple learning disabilities (PMLD). ourselves in the uncomfortable position of harm him so is not allowed to decide what to eat
For example, the language of campaigns being criticised publicly for failing people
often appears to be directed exclusively at with learning disabilities. We were what can ever be achieved in the lives of
self-advocates who “can talk and work campaigning for a supported housing many people with PMLD, and may set
together”, who will “speak up for development of 11 flats in our borough. people up for disappointment or cynicism.
themselves” and who are “helped to talk For example, one of the standards states:
about what is happening”. “I choose how to be healthy and safe.”
This seems to rule out people who do “ We were being Our personal experience is very different.
not use words – people who struggle to criticised publicly for Because of a complex range of
understand or express themselves except gastrointestinal problems, Virginia’s son
through behaviour. Alternatives to words, failing people with Danny has to have a severely restricted
such as pictures and symbols, can be learning disabilities “ diet. He will seize every opportunity to eat
helpful for some – but not all. They are no forbidden foods, without understanding
substitute for the understanding that comes the potentially disastrous consequences.
with knowing someone extremely well. The scheme’s opponents (and potential This means he has to be closely supervised
It is usually family members or long- neighbours) cited the oft-quoted “ordinary and deprived of his liberty around food.
term support workers who understand houses in ordinary streets” and “a He chooses none of this – but it is
the nuances of behaviour, gestures and maximum of six people under one roof” necessary for him to stay alive. The above
facial expressions of a person with PMLD. to object. They persuaded prominent statement not only puts words into his
Lifelong knowledge of someone and their learning disability advocates from outside mouth (Danny does not use words) but
experiences can be vital to making choices the borough to speak against it. also is simply untrue. It can never be true.
and reaching good decisions. Without knowing the facts nor In similar vein, standards 1 and 2 –
Yet, as Simon Jarrett said in the winter appreciating that a very committed local “I choose who I live with” and “I choose
2020 issue (We must be honest about self-advocacy group also supported the where I live” – belie our own experience.
including people with profound disability, project, they judged family carers’ When Clare’s daughter Elinor needed to
page 3): “The very people who often knowledge and perspective as wrong. move out of the family home, there was
dedicate their lives to ensuring their sons The reality in our London borough is that only one possible vacancy locally, a shared
and daughters belong in some way have the most ordinary home is a flat in a house with three others, also with PMLD,
converted house or a block – buildings that where the intensive 1:1 support she
hold far more than six people. Without this requires was offered.
project, 11 people would miss out on their The only choice was to accept or refuse
own flat or have to move far away. and, because Elinor could not understand
An ordinary house in an ordinary street the situation, it was her parents who had to
is beyond the income of all but a few, and decide. The people living there were also
would be inappropriate for wheelchair reliant on others to make the judgment.
users and those with additional needs. This is the challenge: if people with
PMLD and their families are to belong
Unrealistic ideals within the learning disability community,
Another area of potential exclusion of we need to work in partnership towards a
people with PMLD and their families is the good life for all, whatever the disability. n
adoption of “I” statements – for example Seán Kelly/www.seankellyphotos.com
the Reach standards for supported living. Virginia Bovell is the mother of Danny;
Clare Palmer’s daughter Elinor relied on her The statements are aspirational and well Clare Palmer is the mother of Elinor.
parents to make the right choice for her when it intentioned, but give little room for context Both Danny and Elinor have profound
was time to leave home or modification. They are far removed from learning disabilities
12 Vol 33 No 3 | Spring 2020 Community Living www.cl-initiatives.co.uk