C O M M E N T A R Y

Making sense of moving on

Val Williams, Norah Fry Research Centre, Bristol, UK and Neil Palmer and Tiffany England,

Bristol Self-advocacy Research Group, Bristol, UK

Val Williams writes:

Kenneth, Malcolm and their supporters have written a

very important article. When I was first asked to review

it, I sent some comments back to the authors, including

some directly to Ken and Malcolm. They then suggested

that I could write a commentary to be added to it, and I

turned to the Bristol self-advocacy research group, who

work with me regularly. I have helped them with the

writing, but the views and comments that follow are

their own. Neil and Tiffany speak from their own pers-

pective, as people who have also at times had to move on

and to make sense of it.

This article is about two people who were getting ready to

moveon.Wethoughtthat itwasgreattheyhadsupport, tomake

sure they saw some new places to go to, and to talk about what

was important to them. It is often frightening to speak up.

When we were reading this article, we found it a little bit

confusing at times. People should have the right to live in a

normal house but in this article, they call it a unit. They have

got a lot of people living there, like a hospital. We thought

people should only be in hospitals for a short time, but Ken

Banham says that he has lived there for 4 years. Living in a

hospital or unit, they have got lots of people looking at them

and their lives. But, it would be good if they had an inde-

pendent person to help them, like an advocate.

Ken and Malcolm talk about living with people they do not

like. They have got five people in the same bungalow, and

they may well get fed up with each other. They may want to

live on their own. The problem is that they want support.

That is a problem for a lot of people like us, not just people in

hospital units. People often do not get the choice, and they

get pushed in. We feel that we should all get a choice,

including Ken and Malcolm.

It is important for people to go out and to get support so

that they do not get into trouble. It sounds like Malcolm and

Ken needed support, like all of us. We all need good back-up.

We know that a lot of people get anxiety. If they have anxiety,

then it is good if the psychiatrist can support them through

their fears. So, they were lucky to have a psychiatrist working

with them.

When they were moving, Malcolm and Kenneth talked

about the things they wanted in their new place. A lot of this

was about rules and things they may not be allowed to do. It

can be a bit upsetting when people have all these rules, and

people might not like what is said to them. We did not

understand at first why a TV should be bolted down, and

we thought this was silly and upsetting. It is according to

what needs people have, and we know that some things like

lighters may be dangerous. We talked for a long time about

this and what would happen if there was an accident. Who

would be responsible? In the end, we thought that people

need to be able to take some risks. We should be able to tackle

things for ourselves. It is not always about other people

taking responsibility for you. We would not like to live with

all those rules.

It is true that you have to do things for other people when

you live with them and put yourself out for them. You might

have to get up early, for instance, because your partner needs

to get to work. So, that is not unusual. But, staff are supposed

to be there to support you, not to make rules.

If we were moving into a place, we would want to make it

our own. We would want to choose things and buy new

things for ourselves. Something like a circle of friends would

help because they could give advice and help us to bend the

rules a bit. Malcolm and Kenneth might find that too. We

also wondered about why these two men should have

moved to other parts of the country. Has Ken chosen to live

in Devon? Was it because it is cheaper and someone is trying

to save money? We think it is not right for people to get moved

around unless they want to. People should have the choice.

Reading this article made us think about people’s rights.

We all have rights, and we need to make these clear when we

are making important decisions, for instance decisions about

moving. We have the rights to:

� have a choice,

� make our own decision,

� stick up for ourselves,

� choose where to live,

� invite who we want to stay, without people telling us

what to do and what not to do,

� get the support staff that we want, and sack them if we do

not like them and

� have a circle of friends or an advocate.

We are glad that Ken and Malcolm wrote this article, and

that they enjoyed their group. We also hope they both have

now moved, and are living somewhere they really like. We

wish them the best of luck for the future.

74 # 2003 BILD Publications, British Journal of Learning Disabilities, 31, 74