What Can I Do To Make A Difference?

Author: Sam Sly

A version of this article was first published in Learning Disability Today.

Another year over and what a year it was. Austerity is starting to bite, but to what extent is still unclear, all we know is that things are not going to get better soon. The future is looking bleak for many of the most vulnerable people in society with Dr Simon Duffy quoting at the Housing & Support Alliance conference 2% of the population taking 25% of the cuts. These are the very same people we support. 

It is in these times that we all need to pull together, form partnerships and pool our resources, wealth of experience, capacity and energy for the fight ahead. Cuts cause rifts and distrust making the chasm widen between those that have and have not as everyone fights for themselves instead of together. It is only through alliances that we can remain strong and keep doing the best for people.

In November I was privileged to attend the merger conference of Housing Options and the Association for Support Living (ASL) to become the Housing & Support Alliance. Both strong member organisations with a wealth of experience looking to a future where people including those with big reputations live in ordinary housing with good quality support as set out in the ASL report ‘There is an alternative’. It is good to be part of something that looks at the future with optimism and draws strength from an alliance. 

I attended an interesting workshop at the conference facilitated by Sally Warren from Paradigm and the inspirational Nan Carle. Through a new project ‘Ensuring Ordinary Life’s for All’ Paradigm are looking at strengthening the skills of support workers to ensure they are: ‘Risk takers, adventurer, leaders, coaches, mediators, support providers, networkers and bridge builders’ moving away from the more traditional roles to create good lives for people being supported.

It made me think about the positive move this is from when I first became a ‘care’ assistant and we did ‘to’ people and the role was cook, cleaner and general bottle washer! 

As Beyond Limits have worked this year to move people out of Assessment and Treatment Units across the Country it has become even clearer that without strong alliances with others (families, people we support, commissioners, providers, Hospital providers and community professionals including psychiatrists) people will remain in these Institutions indefinitely. This year we have worked successful with a low secure Hospital team to move a person who has been stuck there for 14 years. This length of time is criminal (literally, they would have been out of a prison before this if they’d murdered someone), however the positive is the person is now home and this has only been able to happen in a way that makes sense to them through working closely with the Hospital team and forming positive alliances. 

On another note at the end of 2012 I picked up a book written 50 years ago in 1962 which, as is often the case, I’d watched the film of but never read. It was a depressing read and made me consider how far we had really come in 50 years working with people who challenge services and whether sometimes the new jargon we use for Institutionalisation and ‘sophisticated’ treatment plans that I hear talked about just cover up a continuing fundamental devaluation of the people we support. The book was set in a Mental Hospital where patients were mainly voluntary not detained but still they did not leave. We have recently supported a person who had been a voluntary patient for over 5 years unable to move due to lack of partnership working between professional agencies and an inability of them to see that she could ‘survive’ in the community. Is this any different from 50 years ago? 

There was a quote in the book regarding a man fighting the system and other patients warned him that the Hospital staff would not like it and ‘have to bust’ him, and another quote where staff could only resort to ‘taking away a privilege’ in response to non-compliance. Sadly with Winterbourne this is still a reality 50 years later and it often seems to an outsider that treatment programmes are there to mainly break spirits; someone the other day was described to me as having ‘a sense of entitlement’ to having his needs met as if this was a negative, but more alarming are the ‘sophisticated’ treatment plans so complex that they are often unachievable and so punitive that people often give up trying to reach a goal and revert back to the negative ways that they used before to get attention. Plus goals to work towards that I would see as a human right, for example spending time with your family? 

Again in the book the nurse in the book is quoted as saying ‘It is entirely for your own good that we enforce discipline and order’. Sadly I feel that people are still seen in Hospitals as ‘the problem’ and systems are set up around this way of thinking. 

You may have worked out by now that the book was One Flew Over the Cuckoo’s Nest by Ken Kesey. The question you might want to ask yourself is ‘what can I do to make a difference in 2013?’

The publisher is The Centre for Welfare Reform.

What Can I Do To Make A Difference? © Sam Sly 2013.

All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.