“Advocacy means speak or acting on behalf of oneself or others, or on behalf of a particular issue, with self-sacrificing vigour and vehemence.”
William & Shoultz
In some cases, advocacy is taken for the satisfaction of seeing justice done. In other cases, advocacy is chosen because it concerns the individual engaged in it. Self-advocacy falls in the latter cases.
2. TYPES OF ADVOCACY
Broadly, there are two types of advocacy – citizen and self.
Citizen advocacy is where other people speak on the behalf of persons with learning disability. They take the interests of persons with learning disability as their own and speak for these persons. Citizen advocates comprise family support groups (family members), bodies concerned with persons with learning difficulty or the general public.
Self-advocacy is where persons with learning disability speak for themselves. They tell us their needs and interests. They speak to us.
3. LEARNING DISABILITY AND ADVOCACY
Although learning disability happens, it is not easily received or accepted by society. As a result, persons with learning disability are often neglected and abused. In this light, advocacy concerns change. It seeks to remedy injustices faced by people with learning disability. For instance, these persons are often put last on priority lists. Advocacy seeks to correct the unjust imbalance. It stresses on the rights and interests of these persons as co-members of the human family.
4. PERSONS WITH LEARNING DISABILITY AND SELF-ADVOCACY
Given the right, many persons with learning disabilities can and will self-advocate. A person with mild learning disability self advocates by voicing out his or her views. A person with severe learning disability self-advocates by his or her presence in a public meeting. Their inherent right to be in and part of society must be seen and upheld by us.
Self-advocacy is based on the belief that people are their own best advocates. Thus persons with learning disability are their own best advocates to tell us what they want. On our part, we need to listen to them.
6. TYPES OF SELF-ADVOCACY
There are two types of self-advocacy personal and group.
Personal means a person with learning disability represents himself or herself. He or she speaks as a single person.
Group means group representation. As a group, persons with learning disability speak with one voice.
Personal and group self-advocacy are equally important. In personal self-advocacy, a person with learning disability is given his or her right to choose between a red or white shirt. In group self-advocacy, persons with learning disability collectively write a protest letter to the newspaper or organize a seminar!
7. CHARACTERISTICS OF SELF-ADVOCACY
Some characteristics of self-advocacy are:
The person or group has a goal.
The person or group has an identity.
The person or group has free will to decide.
The person or group is keen.
The person or group has control.
These characteristics suggest that self-advocacy is distinctive. It is something other people do not produce or find a replacement for. It does not compete with other groups or bodies concerned with learning disabilities but rather it complements them. It exists on the principle that all persons have their right of identity and self-representation.
Naturally, the areas for self-advocacy are linked to daily living. Some examples (for personal and group self advocacy) are listed below. The list is not exhaustive.
The areas include:
The chance to have and mix with friends.
The opportunity to make decisions and mistakes.
Awareness of one’s merits and limitations.
The right to learn for oneself.
The areas include:
Access to classes and trained teachers.
Access to job placements.
Access to public or own transport.
Access to personal bank account.
The chance to live on one’s own or in group homes.
The right to marriage.
Affordable health and dental care.
Access to protection of life and property.
The right to legal safeguards.
The right to vote.
In a local (Malaysian) context, self-advocacy, particularly group self-advocacy, is at its formation stage. In this light, personal self-advocacy is vital beginning that can develop into group self-advocacy.
9. GOALS IN SELF-ADVOCACY
Some goals in self-advocacy are:
To enable persons with learning disability to develop to their maximum potential.
To instill in society the human value and dignity of persons with learning disability.
To integrate and involve persons with learning disability in the community.
To bring about proper legislation that rights and interests of persons with learning disability.
Obviously, these goals are not attained overnight or without effort. It takes a strong voice for society to change deep-seated beliefs. Self-advocacy can bring about a change of beliefs.
10. VOLUNTEERS FOR SELF-ADVOCACY
Not many persons with learning disability are ready to speak for themselves. The role of volunteers is to help them towards this end. These persons need opportunities to share ideas and gain new skills. Until they have acquired these skills, they will need guidance and help.
Volunteers can provide such help. Volunteers should normally be independent persons (who are not related to persons with learning disability either through family or work connections) who have a deep empathy for persons with learning disability.
11. DIFFICULTIES IN SELF-ADVOCACY
Some difficulties in self-advocacy are:
Non-disabled people tend to take control of persons with learning disability.
The views and feeling of persons with learning disability may not be respected.
Persons with learning disability may be too shy to speak.
Lack of consistent support from other people.
Negative social environment which oppresses persons with learning disability.
A slow process before results are seen causing success to be doubted.
Although difficulties in self-advocacy are present and sometimes overwhelming, self-advocacy must start and take root. By so doing, self-advocacy can progress and develop into a strong movement in the near future.
12. STARTING A SELF-ADVOCACY GROUP
Here, it is assumed that the volunteer is making his or her first attempt to form a group. The following steps may be considered:
i. See persons with learning disability as persons first.
ii. Think of ways to promote self-advocacy.
iii. Seek advice.
iv. Have combined meetings with these persons and other people.
It is possible that a group may not be keen on self-advocacy. Also, one may notice potential in other persons with learning disability who by mistake have been overlooked. The point is to include as many persons with learning disability as possible in one’s selection and merits. Over time, the strong and weak points of each of these persons are known.
Self-advocacy is not an isolated entity but part of a whole that undergoes constant change. Thus, the volunteer needs to deal with these changes.
13. STAGES IN SELF-ADVOCACY
Here, I shall concentrate on group self-advocacy.
There are three stages in group self-advocacy. They are preliminary, teething and progressive.
Preliminary The preliminary stages are where a few persons with learning disability (a core group) from, for example, a social club, are called to start a self-advocacy group. Activities for self-advocacy can be discussed and organised by these persons. Some examples of activities these persons can plan for themselves are:
Games at social clubs.
Visit to the museum.
Train or bus ride.
Initially, these persons can be unsettled and disorderly. The idea of sharing ideas and learning new skills can seem alien. Also they would be unsure of what to do.
Teething The teething stage is where these persons are more settled and meeting regularly. Here, they have accepted the idea of self-advocacy. They are conscious of their identity and role. They start to speak up.
Apart from speaking up, these persons are also seeking other persons with learning disability (eg. their friends) to join them in activities. A problem they may face is getting other people with learning disability to join them. Just like them, other persons with learning disability have also been dependent on non-disabled persons or service workers and have been told what to do or not to do. Therefore, it is unlikely that other persons with learning disability will easily join them.
Volunteers need to remember their roles. Volunteers merely assist and stay in the background. They must allow persons with learning disability to work together to form their own identity. As volunteers, they inform others with learning disability about the core group.
Progressive The progressive stage is where the core group is able to communicate satisfactorily. At this stage, the core group can arrange for a committee to be chosen. The committee will organise activities such as annual party, seminars or workshops or overnight camping trip.
At this advanced stage, the core group and their new friends become a self-advocacy movement.
Self-advocacy in Malaysia will be different in style from self-advocacy in another country. This is because self-advocacy evolves from within the community and each community is different. Malaysian society is different from say British or American society. So self-advocacy in Malaysia will develop differently.
However, the characteristics of self-advocacy, irrespective of its country of origin, is essentially the same. Self-advocacy whether in Malaysian, UK or USA has similar goals. The point is not that self-advocacy which is common and active in the west is inapplicable in Malaysia. Rather self-advocacy centres on the interests and well being of persons with learning disability as significant persons in the community. This makes self-advocacy vital in Malaysia.
15. SUCCESS IN SELF-ADVOCACY
Success in self advocacy centres on persons with learning disability speaking up.
Sure success depends on the education and awareness of non-disabled people, service workers and the general public.
Often, non-disabled persons and services workers instruct these persons on what they are to do or not to do. Over time, these persons develop undue dependence on other people and doubt their own abilities.
Non-disabled persons and services workers need to consider better ways of communication with these persons. Self-advocacy can be encouraged via constructive education and social interaction. Opportunities for self-representation are needed. Also, public attitude towards persons with learning disability must change. When the general public has been educated to accept these persons as people first, success in self-advocacy is possible.
The idea of self-advocacy in Malaysia is vital. The need for persons with learning disability to have a strong voice of their own is important to their well being and interest. Persons with learning disability are their own best advocates. Through public education, self-advocacy is possible. It is hoped that our caring society will promote its movements.
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