Is this a ‘Pity Party’?

The following was written by a parent of a person with disability on a social media discussion group re disability.

I have heard this garbage of the ‘poor siblings’ and how hard they have it several times in the past and my response will remain the same: What is so hard about it? What is hard is for anyone to have such self-centred siblings who are so focussed on their own little pity party about their ‘hard’ life! Yes children (Persons under 18 years of age) who are siblings of a child with disabilities should have support but…..

I hear this type of sentiment over and over and it saddens me for so many reasons.

Siblings don’t want a ‘pity party’ but they do want some recognition that aspects of their childhood may have been stressful. And that the stresses do not stop at 18 years of age. It might be useful to read some of the research done by Siblings Australia in recent years.

And it isn’t just Siblings Australia that is highlighting the needs of siblings. Some time ago the Australian Institute for Family Studies wrote a research report on the wellbeing of carers of children with disability. They found that they had the lowest wellbeing of anyone in the community and that they had higher rates of depression. They also found that the other children (ie siblings) had higher rates of depression. Certainly our experience with families reinforces that.

The Trauma & Grief Network: Supporting Families is part of the Australian Child & Adolescent Trauma, Loss & Grief Network, based at the Australian National University. It identifies siblings as being one group to experience adversity in Australia. The Royal Australian and New Zealand College of Psychiatry produced a Position Statement and Issues Paper, highlighting the risks for siblings and calling for their support. As have other notable agencies in Australia. And more broadly, there is recognition of siblings via major programs in both the US and UK, and smaller ones in other countries. There is no mention of a ‘pity party’.

No-one reacts when parents talk about being stressed or worn down. When a parent writes on social media that caring can eventually become one of the most physically exhausting, mentally stressful and emotionally draining unpaid circumstance to be in, no-one thinks it is a ‘pity party’ and, indeed, if anyone suggested that it was, then it would be regarded as offensive. But, at the same time, there is little or no acknowledgement of the wider impacts on siblings.

There is much evidence too that the rate of separation/divorce in families with a child with disability is higher than in other families. Why is that so? Because managing a child with disability, especially if it involves difficult or demanding behavior, or ongoing medical crises, can be taxing. It involves stress. That doesn’t mean that parents and siblings don’t love and care about the child with disability – most do very deeply – but we cannot ignore the fact that many of these families experience stress.

Now, certainly, the NDIS is likely to bring huge benefits to families when services become available, but few of them are 24 hour services, and the stresses do not have a timeline. The argument that the NDIS will stop these stresses simplifies family relationships way too much.

In my own case, my sister for many years would be up at night restless and crying. She attended a wonderful school during the day but at home she required a lot of assistance with eating, washing, dressing etc. If we had had an NDIS there might be some services to help with that, but that was the easy part. Her seizures scared us all and her behaviour could be difficult and often stretched way into the night. There would be some bed swapping to enable my dad and I to get some sleep in order to function at work and school but many nights we remained disturbed. My mother had chronic sleep deprivation. We were a very close loving family and my sister was a dearly loved part of that, but were we stressed and anxious? You bet.

I think people forget that young siblings are children dealing with the various stresses, with the emotional and intellectual capacity of CHILDREN. Of course some families are not so stressful but, many are. Added to the stresses involved in the care and behaviour of the child with disability there may be other compounding factors: a depressed parent, divorced parents, a poor social network, low financial stability etc.

There is a lot of very strong research linking chronic stress in childhood to a constellation of chronic conditions in adulthood – depression, anxiety, physical problems. Neuroscience tells us that the stress we face when young catches up with us, altering our bodies, our cells, even our DNA. It is not so easy to shake off the emotions of childhood as we move into adulthood.

As siblings become older the issues change and they can be intensely worried about the future for their brother or sister and themselves. They need to be included in discussions about future planning and given respect when deciding what roles they will play in the life of their brother or sister. For many, they are given no choice. Whilst some parents respect siblings and understand the need for them to have a choice, other parents make it very clear that they are expected to ‘take over’. Some parents fail to make plans and, when parents are no longer able to provide care, the sibling(s) is left with the mess of trying to navigate a service system that often doesn’t respond. Adult siblings on our social media sites regularly talk about their concerns for their brother or sister, wanting them to have a good life, but feeling overwhelmed by the complexity and limits of the system. In some cases the sibling feels they have no choice but to take the person with disability into their own home. And for many this involves giving up their own goals and aspirations in relation to career and creating their own family. Some do this very willingly; others understandably struggle.

There are carer programs but these are not always suitable for siblings – they need support from others who tread the same path, that is, other siblings. There are all sorts of advocacy and support agencies for parents but nothing for siblings. The only organisation in Australia to focus on siblings, Siblings Australia, cannot get any funding, in spite of a national and international reputation for its work.

There is much discussion about ‘voice’, ‘choice and control’ and ‘rights’ for people with disability, as there should be. But we cannot do that without considering, voice, choice, control and rights for other members of the family.

The NDIS views ‘informal supports’ as very important. Siblings have the longest relationship of any with the person with disability; longer than parents, special educators and the like. Surely it makes good sense to try to hear more from siblings, not less, to give them a voice, in order to find out how we can ensure that siblings remain in the life of the person with disability; how we can improve these informal supports, not ignore them. The tragedy for me is that some siblings move right away as the complex stresses in their family are too much. It is too simplistic to think of these siblings as being selfish when we do not know what their childhood experiences have been. What are the barriers to siblings staying involved? What are the enhancers? What do they need in childhood to strengthen the relationship with the person with disability? What do they need in adulthood to assist them in creating a good life for their brother or sister and themselves? The more we can do to support siblings over their lifetime the more likely there will be benefits for them and the person with disability in the longer term. (I am NOT assuming support should come from the NDIS but it DOES need to come from somewhere.)

Of course most siblings are very aware of the needs of their brother or sister with disability being so much more than theirs and grow up with a mix of feelings – love and protection, but also grief and guilt. They are often told from a young age that they shouldn’t complain, that they are the ‘lucky one’. Any child who cannot express their emotions, and in fact is given the message to hide them, is at risk for longer term mental health problems as discussed earlier.

Telling siblings when they try to talk about their concerns that they are having a ‘pity party’ shuts down any open conversation. It is also extremely disrespectful, dismissive and in the long term detrimental to siblings and people with disability.

I do wonder why some parents (and others) are so resistant to the idea that it may not have been a ‘bed of roses’ for siblings. Is it guilt? Is it denial? Maybe their family situation is different to others? Are they just too stretched emotionally to be aware that their ‘other’ children have struggled too? Do they not understand that they have had people to talk to – a partner (if applicable), other parents – and how important that is? Parents may not be able to remove the stresses for siblings but listening, acknowledging, supporting each other and finding outside sources of support is the key to stronger families.

I urge you to truly listen to siblings; acknowledge their experience, show some compassion for the little children that they are or were, trying to make sense of what was happening around them, and for the longer term outcomes that listening and learning might bring.

I look forward to hearing your thoughts.