Advocacy Matters / Know our rights

Why disability advocacy matters

Persons with disabilities continue to face barriers in society that requires significant systemic and societal changes, such as barriers to education, employment, healthcare, poverty, safety, social protection, housing, and accessibility in built environment.

Disability advocacy is important to:

• Ensure that the voices of persons with disabilities are heard.
• Ensure that the rights of persons with disabilities are upheld or protected.
• Ensure participation and representation of persons with disabilities in decision-making spaces and processes.
• Combat against discrimination and exploitation of person with disabilities.
• Support collaborative work that strive to realise barrier-free solutions.

How can I advocate for disability rights?

As a person with disability

Your voice and your choices matter. You are the most important person in the process. Your needs, wants, goals, and aspirations matter.
Know your rights. Understand the local legislation and policies. You have the right to provisions stated in the legislations and policies. You have the right to know why you are being denied a service or why services are being reduced or terminated. You have the right to question a decision. You have the right to know what the process is for challenging a decision and ask for it in writing.
Ask questions. If you do not understand what is being said to you or what was given to you in writing, ask questions. You have the right to ask as many questions as you need to clearly understand what is happening.
It is OK to say no. If the solution offered is not reasonable or helpful, you have the right to say no. Also, you do not owe other people the responsibility to always tell your story or to offer your insights and expertise. Self-care is of utmost importance (please read about The Spoon Theory in explaining daily limitations). Advocacy is a marathon, not a sprint. It is your right to take breaks for self-care.
Prepare and plan. Prepare well by looking over the documents and resources that you need ahead of a meeting, which you can request for in advance if you do not already have them. Plan out your strategy by specifying the issues and having supporting statements, examples or stories. List down specific goals or asks, possible solutions and alternative options that are acceptable to you if your first choice is denied. It is good to talk to others or seek help to assist with your preparation.
Collaborate. Work together with advocacy groups, other disability activists and allies. They have the resources and network to help you navigate different agencies or channel your issue to people who may have the authority to help make things happen. Power in unity. Also, work together with agencies and be willing to listen to their perspectives and ideas. Sometimes, they need support to make changes and move forward.
Be assertive. Be clear about what you want. Talk firmly and with kindness. It is okay to disagree and express your disagreement, and follow that by explaining why you disagreed. Practise assertive communication and negotiation skills if needed.
Follow up. Often, advocacy does not provide immediate results. Persistence and continuous effort are often needed to achieve success or resolve issues. The key is not to give up hope. You may need to regroup your strategy, or reach out to other people who may be able to help you. However, there are also times when your efforts are not successful no matter how hard you try. When that happens, you might need to reconsider your priorities, or things that you are willing to compromise, to work out an acceptable solution for the time being.
Keep records. Keep copies of written documents, including assessments, letters, notices, and email exchanges. These are important especially if you might need them in the future. If you talked with someone, keep notes of the person’s name, contact information and title or position. These information may be helpful to you if follow-up is needed, or if your issue is channelled to someone who is of a higher rank in decision making within the agency.

As a person supporting individuals with disability

Same strategies and tips as the section above: ‘As a person with disability’, points (b) to (i). However, with an important distinction – focus on the individual with disability and collaborative decision-making with the person.

Focus on the individual. Find out what the individual’s needs, wants, goals and aspirations are and support her/his choices. Your role is supporting the individual with disability to obtain the services or provisions that they need to achieve their goals. Ask for what the individual with disability needs — not what you need as a parent, carer, or support person, and not what you think the individual with disability needs.
Collaborative decision-making. Support the individual with disability throughout the whole process by helping her/him to understand what was being discussed and to communicate what she/he thinks about what was being said. Explain clearly and in the communication mode that the individual understands, i.e. Braille, sign language interpretation (Bahasa Isyarat Malaysia – BIM), plain language in their primary language (especially Orang Asal/Asli languages), or visual communication. Help the individual with disability to make informed decisions by clarifying what she/he can expect to happen from the solution(s) that is being offered.

As a person without formal connection with disability

Listen to people with disabilities. Understand the lived experiences of persons with disabilities, our rights, needs, hopes and dreams, joy and pain. Listen carefully to us and with kindness. People with disabilities know best the barriers we face in everyday situations and the solutions that we need to remove those barriers.
Amplify the voices of people with disabilities. Share the words of people with disabilities to your family, your friends, your colleagues, your neighbours, your healthcare providers, your housing management board, your local authorities, your MPs (member of parliament), and civil service agencies. Start having conversations about disability as part of our normal lives. Disability is not a taboo and should not be treated as ‘special’ discussion behind closed doors.
Support the advocacy of people with disabilities. Support disability advocacy to remove the barriers and discrimination we face in everyday situations, and to challenge systemic discrimination in all aspects of living. Assist in efforts that people with disabilities initiated for better quality of living.
Hire people with disabilities. People with disabilities have valuable contribution to the workplace. It does not end with ticking the diversity box. The experiences and perspectives of persons with disabilities not only nurtures greater understanding and acceptance of individual differences, they also improve workplace interaction, work culture, and work systems. No matter if you are hiring a person with disability as an employee or engaging the person as a consultant, pay them fairly because it is their right.
Include people with disabilities in decision-making processes. Before you plan any programme or event, design a product or service, or enact any policy, invite and include people with disabilities every step of the way. Honour and implement action steps that people with disabilities mention that are crucial to our participation and quality of life, especially in making the environment accessible for all diverse needs (physical, emotional or sensory) to enable full and meaningful participation.

Knowing Our Rights

Policy and legislation: Malaysia

FAQ to obtain rights to Inclusive Education in Malaysian mainstream schools (pdf) by the National Family Support Group for Children & People with Special Needs.

Advocacy Matters / Know Our Rights