Advocacy is about justice and the fundamental human needs, rights and interests of everyone, but particularly people with a disability. It can involve getting someone to speak on your behalf, or self-advocacy where you speak for yourself.
Advocacy is important because you are important. Despite society’s progress in the way it supports people with a disability, there is still a lot of unfairness, exclusion and general misunderstanding within the community. People with a disability frequently still don’t have access to various buildings, services and community associations.
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When is advocacy needed?
Advocacy is often needed when supports and services in the disability sector can be minimal, or when:
Other people or organizations aren’t meeting their obligations to you
Your rights are being ignored or violated
You have a responsibility that is difficult for you to carry out
You are misunderstood or are having trouble understanding others.
Advocacy within the hospital system
The best interests of patients and their families are easily overlooked during the stress of the hospital phase. This can occur unintentionally as a result of a lack of necessary resources, work overload or poor communication. The good news is that the role of the social worker is to support families during the hospital phase, and they can advocate for you within the system if you encounter problems.
Finding an advocacy service
Many welfare organisations engage in systemic advocacy – influencing and changing the ‘system’ in general such as legislation, policy, practices and community attitudes to benefit people with a particular disability. Unfortunately advocating for one person or family is so time-consuming that most disability organizations do not take on this role with their already scarce resources.
See if your Brain Injury Association can advocate on your behalf, or can put you in touch with advocacy services who can assist you.
Given the lack of funding in the disability sector, advocating for yourself is a common outcome. Here are some basic steps for self-advocacy.
What is the issue? You may have more than one goal but they will all need to be relevant to the main issue. Gather as much information about the issue as possible (this may be paperwork, notes, receipts, or other general documents). Make sure you always keep a record of everything as you progress.
Develop a strategy through a list of steps needed to reach your goal. Don’t forget to check off each goal as you complete it.
Who do you need to speak to?Contact the organization first to start a resolution process – you must always give the organization a reasonable opportunity to resolve the issue. Read about the organization’s complaint or grievance process. Keep a full record of all contacts and discussions.
What do I say? What you say or write may influence how long the advocacy process takes. Focus on your goal and be specific. Make it clear that you are giving the organization a chance to resolve the issue. Remain polite and calm no matter how upset you feel. Always ask questions if you are unsure about anything.
What if I need help? Sometimes you may need a professional to communicate your views e.g. a doctor may write a letter or speak with someone directly. Consider asking a family member or close friend to assist – they often know your situation well and are highly motivated.
How do I make contact?There are several different methods you can use to self-advocate; phone, email, letter, fax, or the media. Choose the method that best suits you, or the one you feel most comfortable with. Remember that the way you raise your issue will be different from place to place. Some organizations will only accept letters.
Important points for advocacy
Keep emotional control. While passion and emotions may be high due to negative circumstances, this won’t be helpful when attempting to negotiate. Logical and evidential information will always help to influence change more effectively than anger, tears or threats. If you feel too upset, state calmly that you would prefer to continue talking at another time and leave.
Pick your battles wisely. Decide which issues are most important and must be addressed first. You cannot fix everything at once. You shouldn’t forget about other concerns, but it is wiser to prioritize what can be solved, or must be fixed urgently, and only move on once resolved.
Know your rights, entitlements & responsibilities. Thoroughly read about the organization’s policy, legislation, best practice, service standards and objectives. An informed perspective will gain you respect in negotiations and reduce any feelings of vulnerability or dependency on others.
Come with suggestions for resolution, not just complaints. This shows the organization that resolution is possible. It is far more productive to be a willing part of the solution than to simply judge, point out fault, or criticize the efforts of others. Grievances may be justified but anger and resentment rarely lead to a resolution.
Create a win-win situation and be prepared to compromise. Prioritize your needs and rights, but show equal consideration and awareness for the needs of others. This demonstrates you do not hold a selfish disregard or are dismissive of the impacts of these actions. A small gain is far better than no gain at all.
References and further information
Explore these links for useful services and information: