Page 21 - Community Living Magazine 32-3

week in the life

Diary: deciding a valuable life investments into ideas like this change
Commissioners take note – small
lives and can keep assessment and
treatment centres empty.
Simon Jarrett questions ethical values, feeds community life
along with the ducks and gives up virtue signalling Grumpy and happy
One of the people who rounds up and
restacks the trolleys at our supermarket is
recently watched a clip of actress Sarah Both of the children in his real-life case a man with a learning disability.
Gordy accepting an honorary degree at studies had Down’s syndrome, like Gordy. As well as being good at what he does,
i the University of Nottingham. I suspect she has given a little more to he is very grumpy. Over the years, I have
Gordy (Downton Abbey, Call the Midwife) the world she was born into than Peter smiled at him, only to be greeted with a
has Down’s syndrome – she has appeared Singer ever has – how strange that he scowl or utter indifference.
in this magazine. feels that people like him should have the Recently, I asked myself why I smile at
In her speech, she spoke about the right to curtail her life. him – I don’t smile at the other trolley
many people who wrote her off when she stackers. I was forced to admit I probably
was born – she would not be able to walk Food for thought do it so that I can signal to him I am “OK”
or talk and so on. She then reeled off a list visiting relatives in Alresford in with people with learning disabilities.
of achievements in TV, theatre and dance, Hampshire, I came across something He doesn’t give a damn what I think.
and mentioned a speech she gave at the intriguing. By the river Arle, a young I’ve stopped smiling at him and I think
United Nations. If she had listened to the woman called Amy, who has complex we’re both a tiny bit happier as a result.
doubters, she said, she would never have learning disabilities, has set up a duck
done any of these things. feeding station with her father. Theatre of dreams
I saw this shortly after reading Should For a small deposit into an honesty box, On a visit to the former Normansfield
the Baby Live? The Problem of you can buy a bag of duck food. Every day, Hospital in London, I saw the magnificent
Handicapped Infants by Peter Singer, a Amy and her father replenish the stocks 19th-century theatre built by John Langdon
philosopher of ethics. and collect the takings. Down so “inmates” could perform and
Singer argues, using two case studies, It struck me how much goes into this – watch as if they were at a real theatre.
that “severely handicapped infants” a dedicated family, daily food preparation, This was a humane idea – but all I could
should have their prospects considered by buying materials and making daily trips. think about were the efforts made to keep
expert panels in consultation with their The result is a young woman making a people with learning disabilities separate
parents. If the panel predicts the child will valued contribution to her community from the society the rest of us inhabit. n
live a life of pain and suffering, then he or (including the ducks – special feed is more
she should be subject to legalised nutritious and less harmful than bread). It Simon Jarrett is the editor of Community
euthanasia. costs the state not a penny. Living

a PA in a pottery workshop was asking a They have produced a fantastic
person with learning disabilities to choose communication training film based on the
what she would like to make on the research that uses their ideas, acting
pottery wheel, and helped by limiting the expertise and experience.
choice to something “round”. When The misfits say successful support is not
several options had been rejected, she did just in the hands of the PA; people with
not force the issue but recognised that learning disabilities themselves can take
the choice could be made later, and said: responsibility to ensure the relationship is
“OK, we’ll go and look at the shapes and a good match. n
see if inspiration strikes you.” l A Good Match, a film with the misfits
We were interested in when the person theatre company, can be watched at:
with learning disabilities sought out http://tinyurl.com/y68rnqx7
opportunities to reflect on their past Experts: Misfits actors Dan Bryan, Michael
decisions or plan the future. Sometimes Johnstone, Greg Tibbets and Paul Prangley Stainton T, Boyce S (2004) “I have got my life
PAs did drop everything to listen and back”: users’ experience of direct payments.
support their employer. The pressures of the role can mean Disability & Society; 19: 443-454
everyday interaction is difficult when
Conclusions fulfilling a wider objective or task, Dr Joseph Webb is
Interaction and communication are at the potentially limiting opportunities for talk research associate
heart of the PA-employer relationship. that the employer initiates. in qualitative
Being a PA means balancing competing We wanted to draw on the insights of out-of-hours
objectives, and supporting choice but also people with learning disabilities themselves primary care,
finding moments to guide or suggest. This and were fortunate in working with the Centre for
Tony Holdom employer but can be done through ways theatre group run by people with learning Care, University of
has the potential to undermine the
misfits (https://misfitstheatre.com), a
Academic Primary
Bristol
disabilities, who looked at our data and
that respect choice while keeping
opportunities to learn in the frame.
www.cl-initiatives.co.uk drew on their expertise by experience. Community Living Vol 32 No 3 | Spring 2019 21