Adult Siblings – on Lateline

Adult siblings are still overlooked in national policy and programs.

You may have seen the recent segment on Lateline about adult siblings of people with disability. It gave some insight into the experience of three sisters, me included, of someone with disability. I have been talking about my experience for many years now, through books, workshops, radio and TV. I am very used to it but would rather not have to do it over and over. However, I have several messages I am continually trying to get out there and so this seemed like an ideal opportunity – THEY asked me to contribute instead of me seeking media coverage, and it was a well-respected current affairs program with definite political focus. And the deal always includes some personal perspective.

Our main aim with this piece was to raise awareness of the challenges for siblings, from childhood through to adulthood. I think we did that, in a limited way. It certainly didn’t cover the full gamut of sib experience, but hopefully it helped people understand a little more.

However, I had another agenda, that didn’t really get any attention – unfortunately most of what we each said in our individual interviews was edited out so I am following up with this blog to fill in some of the gaps.

The reality is that ALL family members are affected when one has a disability. Some take mainly positive things from their experience; others can be traumatised. Many develop their own mental health problems. I wanted to talk about what could and should be done to support siblings, not just for their own benefit but for the benefit of their brother or sister with disability. Siblings will have the longest relationship of anyone with the person with disability. They can play a crucial role in the social and emotional wellbeing of the person with disability, regardless of any direct caring role they may or may not play. Regrettably, governments and the community still don’t recognise the contributions of siblings and their needs over a lifetime.

The NDIS has repeatedly highlighted the importance of developing and strengthening ‘informal supports’. However, there is little interest in the different roles that siblings might play, and why some move away from their family and others stay involved. What are the barriers and enablers of siblings remaining involved? I fail to see how anyone can have an interest in people with disability and NOT have an interest in siblings. Many people with disability, especially those with intellectual disability, become isolated as time goes on. It seems a huge tragedy that many siblings move away from the family because the stress is too great and they have never been given support to manage their feelings and experiences.

Siblings are rarely given a voice. And when they do it is very difficult to give the full reality. They are not good self-advocates. They may have been told all their lives that they should feel ‘lucky’ that they don’t have a disability. They can feel guilty when talking of their own needs when the needs of their brother or sister can seem so much greater. It can feel disloyal to parents and the person with disability to talk about their own challenges. And certainly there are plenty of people quick to jump in, when sibs do start to open up, with the response that they are just having a ‘pity party’. There is little active listening.

Of course, siblings who had a more positive experience find it much easier to express themselves but all siblings must be given a voice to tell it like it is – without the sense that they are whingeing or being disloyal. Most want a good life for their brother or sister, but they need help to be good advocates for both their brother or sister and themselves.

They need help to connect with others who understand. Every sibling has a very unique experience, which depends on a myriad of factors. As I always say, “if you have met one sibling you have met one sibling”. However, there is always a huge connection when siblings meet; an unspoken understanding, no matter the differences. No-one understands a sibling like another sibling. Peer support for siblings is a crucial part of any support approach. And it needs to start early and continue over the lifespan.

Ultimately we need a national initiative, like Siblings Australia, to ensure best practice approaches in sibling support, to co-ordinate and encourage collaboration between sibling programs. It is a disgrace that Siblings Australia, the only national organisation to focus on siblings cannot get any support from government, in spite of a national and international reputation for its work. Siblings are nowhere in government policy or programs and they should be. We are told siblings can access carer or mainstream services, which shows a complete lack of understanding. Certainly some siblings end up taking on a more direct caring role but they have needs regardless of any caring role they play. And their needs can be quite different to other family carers. They need sib-focused services. Equally disgraceful is the view that siblings can access mainstream services. No, they need specialised services from people who have the relevant training and understanding. Some mainstream services have put out questionable information and others have responded poorly to sibling needs.

Most siblings love and care deeply about their brothers and sisters and want a good life for them. But they need their own support. There must be some national conversation around where and how siblings fit, both in policy and programs.