I find myself often being asked by parents and those who work in the disability sector about being a ‘sibling’. Have there been difficulties growing up? How do I get my kids involved? I don’t want my other kids to be involved because they have their own lives. What strategies can I use in my work to help parents think about their other kids? How do I even get to talk to siblings as we are always talking to parents?

Here are some of my thoughts about the whole area.

Some themes

Brothers and sisters are likely to have the longest relationship with a person with disability. Usually continuing after parents have died, they can last for 70 years or more.

I have run workshops and also observe the roles of siblings in many of the families I work with.

I’ve heard some interesting comments made and stories shared. All with some common themes it seems:

1. A desire by brothers and sisters to be involved but feeling ill-prepared and uncertain about this
2. Families are so crucial to our well-being but they are a mish-mash of power dynamics
3. All sibling relationships are ambiguous. Basically you love and hate your family at the same time but, strangely, this does not diminish love.
4. There exists a deep emotional paradox with many parents. They both want their other children to be there in the future but they also want them to lead their own lives. Even when unspoken, it remains an energy in families and is often hard to talk about
5. Many siblings appear to watching, thinking and planning in their own heads, regardless of whether it gets talked about. They sometimes have very complex and finely tuned plans worked out about where they will live, what will happen for their sibling etc.

The Orders of Love

The Orders of Love is a theory by a guy called Bert Hellinger (Get you Google fingers going) that I have found very helpful in thinking through some of these dynamics.

There is a natural order to a family that is unchangeable (even through events like divorce or death). Parents are first in line. Then there is the first born sibling, the second born and so on. Imagine it like a line of paper cut-out-dolls.

 

 

 

 

 

 

 

 

 

When siblings marry or have a long term partner, they then create their own family, their own ‘paper-cut-out’. Their primary relationship moves to their partner and then often their own children.

However, I think a social dynamic impacts many families in which there is a child with disability that can disrupt this. This dynamic is best represented by those relationship circles that Judith Snow so beautifully captured many years ago. Below is a (sort of and generalised) depiction of the layers of relationship most of us have in our lives.

 

 

 

 

 

 

 

 

 

But what is a common relationship experience for many people with disability?

 

 

 

 

 

 

 

 

 

This can often contrast hugely to other brothers and sisters whose lives and relationships expand as they grow up and they develop their own intimacy circle separate from their parents. This is actually the typical experience.

So one of the keys to strong siblings relationships is that each sibling gets to have their own wonderful web of relationship circles that are their very own. There isn’t pressure or a feeling that siblings have to become the primary relationship for the person after the parent and as they get older. Imagine those paper dolls look like this – where each person in the family gets their own life. You can see that people aren’t then dependent upon each other for relationship, but rather get to contribute to each other.

 

 

 

 

 

 

 

This implies a responsibility by all involved in the life of a person with disability to be working towards building a rich life with lots of different layers of relationships. A life like this mirrors what happens for people without disability.

Other things that are important to consider

Providing siblings with the opportunity to develop understanding of ‘the system’.

Remember, parents have gathered this information over the lifetime of their child (even if they think the system is unsupportive) but it is actually something that needs to be learned especially foundational information like

1. positive stories of inclusion
2. learning what valued roles are and developing a vision for their sibling
3. developing their own vision and having a chance to dream for themselves
4. talking about and mapping our family relationships

A sibling cannot be a parent!

Be wary about looking to ask for involvement based on a parental role. Even when a parent dies, the sibling relationship will stay that way. This doesn’t mean that brothers and sisters won’t play a key advocacy or safeguarding role in the future. But it is healthiest if it comes from their sibling relationship.
It might not get talked about, but caring siblings will be thinking about these things regardless.

Brooching these topics can take us to very raw, very vulnerable places. But it can be crucial for everyone’s peace of mind into the future.