SPEAKING UP

Reviewed by Valerie Mary Ross and Damien Brennan, School of Nursing and Midwifery, Trinity College Dublin & Paul Alford, Dublin

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This is a series of four short books for people with disabilities, looking at advocacy and the things needed to start out as a self-advocate. The reviews here of three of the books should encourage many people to investigate the full series, both for individuals and for self-advocacy groups.

INTRODUCING ADVOCACY (Book One)

The word advocacy is a term that is being used ever more increasingly within the social services and civil and human rights circles in the context of working with children, people with disabilities and people with mental health problems. Advocacy is described as ‘speaking on behalf of a person or empowering that
person to speak for him or herself’ (Citizens Information Board). In a time where the emphasis is on promoting people’s rights, Tufail and Lyon have recently produced an excellent and timely publication Introducing advocacy, which aims to promote self-advocacy to disabled individuals who want to learn to speak up for themselves.

This book is a manual for promoting self-advocacy and equal partnerships between advocate and user. Authors Tufail and Lyon, directors of People’s Advocacy Network in New Zealand, are well experienced in the field of advocacy. The book is clearly written and is consistent in style and presentation. The contents are set out over ten chapters which outline the different models of advocacy. The text is pitched at a level for the reader to gain a basic understanding of each model and each chapter provides the reader with a range of questions to help them recap on the content and raise questions of their own for discussion. The authors cleverly capture the reader’s attention with colour illustrations that provide visual stimulation throughout each chapter. The use of such illustrations could allow the reader time to reflect on the content of the text and also help engage those readers who require extra assistance with their literacy skills. As the book is intended to serve ‘as a training aid to expand the life skills of the individual with learning difficulties’, perhaps the encouragement of the use of drawing and art could have been promoted and built upon in the questions section of each chapter, as a means of getting readers to express and communicate their views on the topic area.

Advocacy draws attention to the need for the individual’s views to be expressed, communicated and understood by those around them and that advocacy is not what other people think the individual wants. Tufail and Lyons clearly and consistently reinforce this message throughout the book and illustrate this through the use of well-devised case studies to which most people can relate. The case studies presented in relation to the different types of advocacy (whether citizen advocacy, crisis or intervention advocacy or health-complaints advocacy) generate and trigger thoughts in the reader which can help them to reflect and identify situations in which they may have found themselves. The reader is prompted by the information presented to begin to think of ways in which such difficulties could be resolved and addressed in their own case. The central argument of the book is that advocacy must be individualised and it offers a clear approach highlighting the advantages and disadvantages in engaging and working with an advocate.

Many people who require advocacy services often need to be initially informed that such services exist for them. Often healthcare professionals and voluntary agencies are best placed to provide this information, but one must pose the question ‘does this happen?’, and if not, why not? In reading this book and through consultation with others, one realises that perhaps professionals may not be as knowledgeable and as informed about the subject area as we would like. This book is the ideal tool to equip and inform the professional in promoting advocacy for their clients. The role of the advocate, the range of advocacy services and their aim and functions are clearly set out, as well as what should and should not be expected of an advocate. Each chapter can be read or referenced individually or as part of the integrated manual. The overall view of the book is that it is factual and provides a good and comprehensible guide to the range of advocacy services and models available to the vulnerable person living in general society, residential and community settings. Advantages and disadvantages of the various advocacy models are highlighted, which is helpful to the person seeking an appropriate service to address their needs. Although the authors state that the book is aimed at promoting advocacy and self-determination for people with learning difficulties, the content is transferable and adaptable to promoting advocacy for any member of the community. It is a good read, informative, and an excellent training package.

LISTEN UP! SPEAK UP! (Book Three)

I was very excited to see the title of this book I thought it would be something to help me to am not there, and I want to shout out I have a view. I am always too nervous and afraid to make a fool of myself by saying
something stupid. This book gave me great hope. At first look it had bright pictures and lots of signs which were easy to follow. The book is made up of six parts. 1 Be strong for yourself 2 Roy’s story 3 Listening 4 Points of view 5 Speak up at meetings 6 Why don’t you practise? I liked Roy’s story the best, as it was very true of lots of things which happens to anybody with a disability when nobody listens to us. I was given great hope when Roy won out and his life changed, thanks to him speaking out and not taking ‘no’ for an answer.
Part 5 was also great. It was about meetings and will be of help to self-advocates, but it would take some strength to stop a meetings or to let the people attending the meetings know that you cannot understand what they are talking about. I know I get bored at meetings as people talk too fast and I lose track.

I think all self-advocates should have a copy of this book to bring along to meetings to help them get more out them. The only thing I didn’t like about the book was that some of the words were hard for me to read and understand, but still it is a very good book to help someone like myself to speak up. The book will also be very helpful to people dealing with self-advocates as well as the advocates themselves.
Deirdre Spain, Dublin

ADVOCACY IN ACTION (Book Four)

I’ve read the book about Advocacy In Action. The story was about a girl called Dilly. She medication, a lot of it. Dilly found it hard to understand things or work things out. Other people had to make decisions for her and I think that Dilly should have made her own decisions, because everyone has the right to make their own decisions.

People in the house with Dilly said she had a bad temper and they took her to the doctor to see what he could do. The doctor put her on medicine three times a day and I think her medicine made her worse. When she was bad tempered she used to shout, throw things around the house and people used to complain about her a lot.

The staff had to call her father in for a meeting to see what they could do to help Dilly with her problem. The meeting went on, but Dilly was not at it. I think it was wrong not to ask her to their meeting and it was her right to be there because the meeting was about her.

The staff and her father said they could speak for her, but she should be able to speak for herself- Later on Dilly was able to speak for herself and I think that was great, because self-advocacy people should be able to speak for themselves and people who can’t could ask people to speak on their behalf.
Dilly improved a lot and had a support worker. She went out a lot and did exercise and played music. That is important that she could go out and do her own thing, isn’t that great now?

Advocacy is about helping people and speaking up for themselves. It is good when people do that. Communication is about understanding. Everyone can communicate, someone who can’t talk at all can communicate, but most people don’t think about it because it is too hard. It is important that you communicate with people and help them, and not to get lazy and blame people when they cannot understand.

Advocates can communicate by phone, also by letter or email or fax. They can set up a computer conference or use Braille or signing. It is great for self-advocacy people to do that sort of work.

Self-advocates who communicate at a self-advocacy meeting should be careful what they say, but what they say should stay where the meeting was. That is very important. Self-Advocacy people have the right to say what they want to say. That’s another good thing about going to advocacy meetings. Self-advocacy people can go to their organisation if they want help with their problem and sort it out.

Self-advocacy people can live independently, do their own thing and get support and help and advice if they need it. Rights are very important for everyone, not only self-advocates, but everyone else too.
In the story in the book, Mandy did not have a wheelchair and the advocacy group helped her to get it. They had to write lots of letters to get it. Eventually she got her wheelchair- It was right she got it and that, then, she could get around and about.
Paul Alford, Dublin

SPEAKING UP: A plain text guide to advocacy, by John Tufail and Kate Lyon. London, Jessica Kingsley Publishers (2007). Individual volumes £13.99/14.99; 4-volume set, £45.00- Introducing advocacy: ISBN 978 1 84310 475 9 Rules and standards: ISBN 978 1 84310 476 6 Listen up! Speak up!: ISBN 978 1 84310 477 3 Advocacy in action: ISBN 978 1 84310 478 0 4-volume set ISBN: 978 1 84310 474 2

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