Legitimacy And The Value Of The Parent Voice In Advocacy

One of the best safeguards of our hopes is to be able to mark off the areas of hopelessness, to face them directly, not with despair but with creative intent of keeping them from polluting all areas of possibility.” – William Lynch.

Sometimes the role of the parent voice on behalf of people with disabilities is questioned by those who do not understand why people who have disabilities need strong advocacy. Yet most parents know that the effects of a person’s impairment can be overwhelming, especially when it is coupled with complex support needs and the negative attitudes of others. On top of these, systems and services can make life-defining decisions that effect people’s well being and human rights.

It is believed that parents do have a recognised natural authority in the lives of their sons and daughters in our society. When the person is a child, their parents are their legal guardians. In adulthood the natural authority of parents can continue, especially when something goes amiss or when their son or daughter has ongoing support needs as a result of having a disability.

It is typical that parents:

Have commitment and take great responsibility for the well being of their son or daughter.

Know their son or daughter the most from long term observation and insight.

Are attributed decision making especially when the person has difficulty in doing so.

Have a stake in the outcomes and live with the consequences.

Bear witness to the performance of services.

Are there for the long haul and are more free of vested interests.

Bring talents, knowledge and experience.

Know the real life stories.

Are well positioned to see how life adds up.

Are well positioned to take action on their son or daughters behalf.

Not only does the parent voice have a legitimate role, but also we are stronger when we come together to share our experiences and wisdom about what needs to happen on behalf of people with disabilities. We recognise that we are not alone and affirm that our knowledge, expertise and dreams are real. We hold the stories of lived experience through our sons and daughters and we gain greater understanding and strength in uniting for justice and decent lives.

Collective advocacy gives us opportunity to dream, to be inspired, to have information, to learn, to network, to have hope and to take action for a better future. Our advocacy enables creative thinking about what a better future might look like, as it inspires long term vision and action and re-energises us to continue to be there for the long haul. It helps us to keep hold of the bigger picture, and to be proactive and not focus on reactive, simplistic solutions that are of little value.

Knowledge is power!

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