“Children are not a distraction from more important work. They are the most important work.” – C.S. Lewis.

Parents of people with disabilities hold the same aspirations for them, as they would any son or daughter- there hopes are not pipeline dreams, however it takes a extra effort for these dreams to come true. Being realistic about these achievements, parents know that it takes an enormous about of time and effort for their son or daughter to live an ordinary life.

This deceptively simple aim of people with disabilities living valued lives comparable to those on offer to most other citizens is, in fact, very complex to achieve. Many of the systems that support people with disabilities, although having admirable jargon and good intent, actually work against these aims. Through their values and practices, especially those that put resources together, people with disabilities are grouped and taken out out of ordinary life.

Changing these systems takes a long time, often meeting brick walls which require creativity and influence to dismantle. However while progress has been slow, parent organisations such as Queensland Parents for People with Disability and Parent to Parent have made significant progress in some areas which have improved the lifestyles of people with disabilities. Despite this, while the gates to an ordinary life have open for some, many still remain excluded behind them.

Parents will always have a role to play in being vigilant and in bettering the lives of people with disabilities. A lesson that can be taken from history is that there will always be injustice in the world, this is why advocacy will always be needed – to protect our most vulnerable.

Parents and families are the ones that know their family member the best, therefore it is important that they have a strong voice, when it come to advocating for people with disabilities. While one family can advocate for the best outcome for their family member, collectively, parents of people with disabilities can achieve far greater systematic change for all people with disabilities.

It is a belief that that in order to keep people safe, and for them to have a decent life comparable to other citizens, we need strong support of advocacy for individuals, done by family and loved ones, by paid advocates and by citizen advocates. Yet individual advocacy is not enough. Many issues faced by people with disabilities and their families are common and are inherent in the wider beliefs, structures and practices of our society and in the actions of our governments.

Systemic advocacy addresses these concerns in two ways by supporting people to come together to advocate on issues of commonality, as well as by having paid advocates who continue to address the injustice and complacency of the broader societal systems, so the needs of people with disabilities are met.

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.

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.