Whānau hold a unique position in most people’s lives. Families know a person’s history, can help interpret their needs, and have knowledge about how to meet those needs. They know the ordinary routines of daily life, important traditions and values, as well as the expectations around the conditions of a person’s idea of a good life. This intimate knowledge gives families natural authority and puts them in a strong position to advocate for their loved ones, if this is needed.
For some families who are helping a person with disability work towards the good life, the knowledge that they have natural authority can help them feel secure that their views, wishes and concerns will be acknowledged when it comes to making important decisions.
Many family members play a big and important role in the lives of a loved one with disability, and this valuable contribution and expert knowledge should never be underestimated or devalued. It is important to remember though, that natural authority does not mean taking away someone’s rights to personal choice, expression and self-determination. A balance needs to be found between speaking on someone’s behalf, and supporting that person to have a voice of their own.
Here are some points we think are useful for family members to think about when it comes to speaking with and for a loved one with disability:
- be clear with others about what is your voice – your views, wishes, concerns, and preferences – and the voice of the person – their views, wishes, concerns and preferences
- be as clear as possible about your role and how it might influence your views
- make decisions with the person rather than for the person
- enable the person to develop their decision-making skills through small everyday choices
- support the person to gain confidence speaking up and sharing their views in a respectful manner (Kendrick 2013).