Advocacy, Brain Injury & self-advocacy
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.
Why is advocacy important?
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.
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
- Your rights are being ignored or violated
- You have a responsibility that is difficult for you to carry
- You are misunderstood or are having trouble understanding
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
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
Given the lack of funding in the disability sector, advocating
for yourself is a common outcome. Here are some basic steps for
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
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
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
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
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
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: