Self-advocacy Is One Of The Most Important Ways In Which

Self-advocacy is one of the most important ways in which people with intellectual disabilities have a voice of their own. The words of Jackie Downer, a self-advocate, encapsulate all that self-advocacy has the potential to be. Her words emphasise that having a voice of your own is immensely personal and therefore is important to different people for different reasons. Through her words, the importance of people with intellectual disabilities having a voice of their own, is emphasised. In explaining self-advocacy, Jackie says, "Broken down it means 'speaking for yourself', 'communicating in other ways', but it's personal. For me it means that I can speak for myself. It means I've got a voice and even without a voice I can communicate in other ways. It means yes and no- most important- 'No, I don't want tea, I want coffee, I don't want sugar'- all the things we take for granted. It means people must listen to me, I can take a risk, I can have a relationship, that can be hard. I can think for myself, I can go to the shop with support and if I need help, people can help me…." (Jackie Downer in Goodley 2000:81). 'Speaking for yourself' Self-advocacy, or having a voice of your own, is fundamental to both asserting yourself and exploring yourself. This is important because it is directly linked to building confidence and self-esteem. It is important to have the possibility of talking about your life and your experiences so that who you are can be validated by others. In this way having a voice of your own has the power to construct your identity. 'I've got a voice and even without a voice I can communicate in other ways' It is important to emphasize that having a voice of your own does not necessarily mean having a literal voice. People who are non-verbal are able to communicate themselves, their likes and dislikes, their wants and needs, in ways other than words. For example, taking a person by the hand to show them where they want to go, pointing to pictures, symbols or photographs. This is important because self-advocacy is sometimes criticized for only being relevant to people who have mild to moderate intellectual disabilities. It is necessary to acknowledge that all people, even those with severe intellectual disabilities, can communicate and express themselves. 'It means Yes and No' Having a voice is important as a means by which you can communicate to others who you are, what you like, what you don't like, etc. It is important because it means you can make choices about your life and about what is important to you. As Jackie's words express, it can be about seemingly small things, like whether you take sugar in your tea, or about bigger things, like where you want to live. If you have your own voice then other people are less able to make assumptions about you and your life. This is especially important for people with intellectual disabilities who have traditionally been seen as incapable, as not having their own opinions, desires and wishes, and as being

1

dependent on those who look after them. In this way having a voice of your own gives you power. 'People must listen to me' Self-advocacy is important because people can speak out publicly. If people have a voice of their own they can comment on the services they use, can define how they want to be known- as people with intellectual disabilities rather than 'handicapped', can campaign for issues which are important to them, for example the closure of institutions or how money is spent in day services, can advise on the creation of new policies and services, etc. 'I can take a risk, I can have a relationship' Self-advocacy is partly about knowing your rights as a human being. This is vitally important in a society which still discriminates against people, who have the label of intellectual disability, owning their own home, falling in love, getting married, having children and working in ordinary workplaces. If you have a voice of your own you can assert the right to take a risk, to choose again and to learn from your mistakes. 'I can think for myself' One of the most important consequences of having a voice of your own is that it has the power to challenge how people with intellectual disabilities are thought about in society. They have traditionally been seen as a group who were incapable of thought, of action, of being able to live their lives as others do. This has led to their discrimination, segregation and isolation. If this perception is challenged, then people with intellectual disabilities will be nearer to being included and treated as equals in our society. 'I can go to the shop with support and if I need help, people can help me' Finally, having a voice of your own is important because people with intellectual disabilities have traditionally been dependant on carers, professionals, and parents, for knowing what was best for them. If people have a voice of their own then the power relationship is significantly altered. It does not deny that people with intellectual disabilities need help and support, but emphasizes that they can define what kind of help they need, when they need it and for how long. It is thus acknowledged that all people have strengths and weaknesses and that no one individual can be either totally 'capable' or 'incapable'. Through Jackie's words it can be seen why it is important for people with intellectual disabilities to have a voice of their own. Having a voice is important for everyone, but for people with intellectual disabilities it is crucial due to their segregated, isolated and discriminated against, position in society.

Many people with intellectual disabilities are not

listened to, experience little control over their lives

2

and feel they are not treated with respect. This is often the result of under-estimating their abilities. Many family members and professionals still see people with intellectual disabilities as children and do not allow them the freedom to take decisions, make mistakes and exercise some control over their lives. Inclusion Europe believes that family members and professionals have a crucial role to play in giving persons with intellectual disabilities opportunities to express what they want and to take their own decisions. This will help them to build their own identity and thus people with intellectual disabilities can start to live a life of their own. They will become less dependent on parents, brothers, sisters, or professionals. Inclusion Europe also believes that most people with intellectual disabilities have the ability to participate and make a contribution to society. It is in everyone's interest to develop their abilities in order not to miss their positive contributions to the diversity of our societies. Among people with intellectual disabilities and their supporters, these efforts to speak up for oneself are called “self-advocacy”.

of People with Intellectual Disabilities and their Families, supports it in its work. The European Platform of Self-Advocates is lead by a Steering Group of five persons with intellectual disabilities. The platform: helps people with intellectual disabilities to decide more by themselves; tells other people about the abilities of people with intellectual disabilities; supports groups of self-advocates at local and national level; works for more accessible information and websites. 







To help persons with intellectual disabilities to become self-advocates, you should:

1. Ask them about their opinions Persons with intellectual disabilities can have a different opinion than you would expect. Often, people have ideas about what is best for another person that this person does not share. Therefore you should always ask the persons first what they want.

2. Learn to listen to people with intellectual disabilities In the course of their lives many people with intellectual disabilities have learned that their opinions did not count. Therefore, they are often careful in expressing themselves. They may also not have a clear idea about what they want or find it difficult to express it. Therefore, learning to listen carefully to what is said and how it is said is most crucial for family members and professionals who want to support self-advocacy.

Self-advocacy groups of persons with intellectual disabilities exist today in almost all countries in Europe. The last years have seen the emergence of a new profession of supporters and facilitators who have developed the approaches and skills to assist the autonomous development of selfadvocates. This shows how important the movement of selfadvocacy has become in recent years. Many national or local self-advocacy groups have joined the European Platform of SelfAdvocates (EPSA). Inclusion Europe, the European Association

3. Provide appropriate information and opportunities for expression People with intellectual disabilities often lack appropriate information to take a real decision. They may not be able to read or may need a clear personal

3

explanation of difficult concepts. The provision of information in an appropriate and understandable form is often one of the biggest challenges for self-advocacy.

their self-esteem may be low. All activities to strengthen their self-esteem as equal members of society are therefore important.

7. Ensure contacts with positive role models Peers with intellectual disabilities who already have developed more independence and decisionmaking abilities are the best role models for other people with intellectual disabilities. It is important to facilitate contacts with such people.

4. Do not over-protect It is natural and positive to protect other people from harm or from the negative consequences of bad decisions. But on the other side, people do not learn if they cannot make mistakes and feel the consequences. For family members and professionals it is important to treat people with intellectual disabilities with respect and neither overprotect them nor expose them to serious consequences of decisions which they could not anticipate.

8. Facilitate self-advocacy groups Self-advocacy groups play an important role as places where people with intellectual disabilities can exchange their views and develop positions regarding issues that affect them as a group. Family members and professionals should support the creation and work of these groups, but be very careful not to influence the contents of their work. Selfadvocacy groups are the most effective way in which people with intellectual disabilities can influence policy. They should exist in each service and at local, regional and national level.

5. Provide the necessary training To assert one's self takes time and support. Training may be necessary to help people to develop this skill. Training in different skills and in inclusive settings is crucial for the development of a person throughout their lives.

6. Help to develop self-esteem People with intellectual disabilities have often experienced many years of disrespect. As a consequence,

4

Advocacy is speaking up for, or acting on behalf of, yourself or another person. The other person is often receiving a service from a statutory or voluntary organisation and is referred to throughout this handbook as the service user. Advocacy can help service users to: make clear their own views and wishes; express and present their views effectively and faithfully; obtaining independent advice and accurate information; negotiate and resolve of conflict. Some people aren’t clear about of their rights as citizens, or have difficulty in fully understanding these rights. Others may find it hard to speak up for themselves. Advocacy can enable people to take more responsibility and control for the decisions which affect their lives. 1. What the person says and wants is the most important thing. 2. Advocacy enables individuals to do more for themselves and lessens their dependency on other people. 3. Advocacy should help people to make informed choices. An advocate must ensure the service user is making real choices based on good quality information. 4. Advocates should not have a conflict of interest. So that they can speak up for someone effectively, there must be no other pressures on the advocate. This is why the advocate needs to be independent of the service provider. 5. People must have choice about the type of advocacy they use. Service users should be able to choose the type of advocacy that suits them best (see Chapter 4 on Advocacy Models). Some service users feel that they need one person who is willing to act on their behalf whereas others will prefer the support of a group. Others will want to advocate for themselves, as far as is possible, with only the minimum of support. The choice of advocacy model will vary according to the person's needs. CODE OF PRACTICE FOR ADVOCATES 1. An independent advocate will not be a member of staff of the organisation providing the service to the service user. 2. The role of the advocate is to represent the views and wishes of the service user accurately and effectively. 3. Before agreeing to act as an advocate, an advocate will always check that the role of advocacy is fully understood and this is what the service user really wants. This may involve setting out expectations from both sides 4. An advocacy relationship will last for as long as both parties agree. 5. An advocate will agree in advance with the service user how contact will be made, how often and in what form it will take. 6. An advocate has a right to raise any issue on behalf of the service user. 7. An advocate does not need to agree with the service user, only to respect their view and express it accurately. 8. An advocate will not take on someone else's responsibilities but they may encourage someone to do their job more effectively. 9. An advocate will always respect the service user's right to privacy and confidentiality. 10. If an advocate is unsure about what to do because of a conflict of interest, they should contact their advocacy group or manager for support and advice. The service user's interests should not suffer because of pressure placed upon an advocate. 11. Advocates will demonstrate respect for equal opportunities in all that they do. 5

12. The advocate's first loyalty is always to the service user they work with. 13. Advocates must demonstrate that they are there to encourage and help the service user manage their own affairs wherever possible. 14. An advocate must be prepared to undertake appropriate training and accept guidance. Advocacy Organisations should have available copies of their Code of Practice for the public.

6