Welcome to my first ever blog. Having just had our 2nd National Conference, Creating Connections in Adelaide, it seemed a good time to start. It was a wonderful event with a number of highlights for me.
Of course it was a celebration of the work being done for siblings around Australia, and also in the US. It was also an opportunity to connect with other family members, providers, researchers and policy makers, share current research and think about future directions in sibling support. The adult sibling sessions provided a unique opportunity for siblings aged from 17-73 to come together and share perspectives and future needs.
Through this blog I will reflect on a number of issues related to siblings of people with a disability. Hopefully the posts will encourage some discussion around these topics.
This first one will focus on the link between siblings and the term ‘carer’
For some time now I have had some concerns around the use of the word ‘carer’ and ‘young carer’ in relation to siblings. The conference strategy session reinforced this view, and gave a very clear message that siblings needed to be considered separately from the terms ‘carer’ and ‘young carer’.
Let me state from the beginning that I am aware of the tremendous work done by carer and young carer programs around Australia and this reflection is in no way a criticism of that work. I am just highlighting some difficulties around the use of the words in reference to siblings of people with disabilities. So what ARE some of the concerns? In no particular order:
• Often siblings, especially when young, take on a ‘secondary carer’ role, to the parent's 'primary carer' role and so can be overlooked by carer groups
• Siblings do not relate to the term ‘carer’ – they see what they do is an extension of being a brother or sister. They are less likely to respond to ‘carer’ programs than sibling ones
• There is some overlap between the issues for carers and for siblings but there are also some very big differences
• Siblings can have some difficulty developing their own identity. If we start to identify them as ‘young carers’, this process can become even more difficult. Also the label is likely to last a lifetime, of course changing to ‘carer’ as they age.
• There need to be choices in any caring role – young people find it much more difficult to make those choices
• Maybe the term ‘carer’ can be more acceptable as siblings age and parents are no longer around to provide care but it still seems that both the sibling and the person with a disability do not like the term ‘carer’
• We just conducted an online survey of adult siblings and had over 90 responses. Overwhelmingly sibs said they did not want to be seen as a carer to their brother or sister with a disability – they saw themselves as brothers and sisters first
• They believed that their brother or sister with a disability preferred them not being seen as their carer. It is understandable, from a dignity point of view, that people with disabilities would prefer their brothers and sisters to be just that, and not their ‘carers’
• Using the term ‘carer’ or ‘young carer’ legitimises the roles that carers play, which in some ways is a good thing, but on the other hand it also makes it easier for governments to not take responsibility for the lack of services. Does the government expect siblings to take over the caring role? Some would argue this is not reasonable of governments. However, if this is the expectation, surely there should be some open discussion about this. Siblings need to be supported in whatever role they choose to play. And of course that may change markedly over a lifetime.
Of course it was a celebration of the work being done for siblings around Australia, and also in the US. It was also an opportunity to connect with other family members, providers, researchers and policy makers, share current research and think about future directions in sibling support. The adult sibling sessions provided a unique opportunity for siblings aged from 17-73 to come together and share perspectives and future needs.
Through this blog I will reflect on a number of issues related to siblings of people with a disability. Hopefully the posts will encourage some discussion around these topics.
This first one will focus on the link between siblings and the term ‘carer’
For some time now I have had some concerns around the use of the word ‘carer’ and ‘young carer’ in relation to siblings. The conference strategy session reinforced this view, and gave a very clear message that siblings needed to be considered separately from the terms ‘carer’ and ‘young carer’.
Let me state from the beginning that I am aware of the tremendous work done by carer and young carer programs around Australia and this reflection is in no way a criticism of that work. I am just highlighting some difficulties around the use of the words in reference to siblings of people with disabilities. So what ARE some of the concerns? In no particular order:
• Often siblings, especially when young, take on a ‘secondary carer’ role, to the parent's 'primary carer' role and so can be overlooked by carer groups
• Siblings do not relate to the term ‘carer’ – they see what they do is an extension of being a brother or sister. They are less likely to respond to ‘carer’ programs than sibling ones
• There is some overlap between the issues for carers and for siblings but there are also some very big differences
• Siblings can have some difficulty developing their own identity. If we start to identify them as ‘young carers’, this process can become even more difficult. Also the label is likely to last a lifetime, of course changing to ‘carer’ as they age.
• There need to be choices in any caring role – young people find it much more difficult to make those choices
• Maybe the term ‘carer’ can be more acceptable as siblings age and parents are no longer around to provide care but it still seems that both the sibling and the person with a disability do not like the term ‘carer’
• We just conducted an online survey of adult siblings and had over 90 responses. Overwhelmingly sibs said they did not want to be seen as a carer to their brother or sister with a disability – they saw themselves as brothers and sisters first
• They believed that their brother or sister with a disability preferred them not being seen as their carer. It is understandable, from a dignity point of view, that people with disabilities would prefer their brothers and sisters to be just that, and not their ‘carers’
• Using the term ‘carer’ or ‘young carer’ legitimises the roles that carers play, which in some ways is a good thing, but on the other hand it also makes it easier for governments to not take responsibility for the lack of services. Does the government expect siblings to take over the caring role? Some would argue this is not reasonable of governments. However, if this is the expectation, surely there should be some open discussion about this. Siblings need to be supported in whatever role they choose to play. And of course that may change markedly over a lifetime.
Ultimately we need to be mindful of sibling issues being lost under the ‘carer’ umbrella. I look forward to your thoughts.
Posts
As the 28yo sister of a 20yo Rett Syndrome girl, I have been looking after my sister in some shape or form since she was born. This care has always been given as part and parcel of being a big sister, not a carer. I think parents would see it the same way, and would not be comfortable with the title of carer thrust on their other children. Particularly at a younger age, it implies the care is required as a matter of duty with no regard to sibling bond - which I've no doubt is the most significant motivation. This doesn't undervalue the care given, but certainly presents justification for unique support and resource programs.
ReplyDelete