- Amy Maddison
Kindness for families with disability
When I thought about ‘kindness’ in the health sector and in the community, I immediately thought of my viewing of the ABC series, ‘Love on the Spectrum’. The group of people on the autism spectrum are all looking for romantic love and endear themselves to us more and more as the series goes on. There are all sorts of quirks and amusing behaviours, but only the unkindest of hearts would react negatively to these wonderful human beings.
Sadly, many people do treat people with disability and their families unkindly. Sometimes it is a form of ‘othering’, a reaction to the perception that these are people ‘not like me’. Other times, it is through ignorance or fear of anyone with difference. From my own experience as a child growing up with an older sister with cerebral palsy, I remember too well the people who stopped in their tracks and stared as we moved along. We all - my parents, my sister and myself - could have used a little kindness on those days.
Many years later, after several careers including as hospital scientist, health educator, counsellor, and print/radio journalist, I set up a not-for-profit to support siblings of children and adults with disability, Siblings Australia. Over 22 years, we have established a national and international reputation for the work we do with families and professionals.
Regrettably, in spite of disability awareness campaigns, I continue to see an absence of kindness in situations where even a little of it could be of enormous benefit, especially in relation to people with disability and their families. The little sister of a child with disability who found that the other kids would not play with her because she had ‘disability germs’. The young brother who was told, ‘your brother’s a retard; you must be too’. We know where those messages are largely coming from. No child is born holding these ideas. We need to continue to educate the community and parents to ensure greater awareness and acceptance of difference.
And the disability, health and education sectors can all improve how they interact with families that include disability. All members of a family that includes a child with disability are affected by the disability. However, often, there is a focus on the parents and the challenges they face but there is a lack of understanding of the contributions and challenges for siblings in the family. When compared to the child with disability, they are thought to be the ‘lucky ones’, or a belief that because ‘they can walk or talk’ that they are ok. There can be hidden emotional impacts that go unnoticed and lead to longer term problems.
Siblings can be confused by what is happening around them and not understand the extra attention their brother or sister needs. They might develop a range of fears and worries but feel they don’t have anyone to talk to. There may be extra responsibilities. A child might regularly be sitting in the waiting room while a brother or sister with disability and parent visit various practitioners. If they are acknowledged at all it would likely be as ‘Johnny’s sister’ or ‘Susie’s brother’. It wouldn’t take much effort for them to be seen in their own right, given kindness, and helped to feel a little special themselves. In the education sector, an aware teacher might give some allowance to a child who is a sibling and who doesn’t complete homework or seems tired much of the time. If they are struggling socially, some support might help. Again, showing a little kindness and understanding to a young sibling could make all the difference to how they feel about themselves.
If older siblings raise any concerns, they might be seen to be engaging in a ‘pity party’ and any challenges dismissed. Siblings are not looking for pity; they know full well that they don’t face the same challenges their brother or sister does. However, they do need kindness. They need people to understand that as children, and without maturity to cope, they likely become very confused by what is happening around them. They may struggle to manage the big feelings like grief, guilt and worry that many siblings experience, and not feel able to ask for help.
These families could use your kindness and compassion. Next time there is an opportunity, reach out and acknowledge them. Even just a smile or a nod can help them feel less isolated and better understood. However, if there is an opportunity to show real interest in a sibling, it will likely help them to feel seen and valued.
Back to the TV show ‘Love on the Spectrum’ which allowed the community to see people with autism as not much different to ourselves – we all have different degrees of quirkiness or awkwardness. Hopefully it will help to break down some of the barriers which lead to people being unkind and contribute to greater acceptance of differences.
Founder and CEO, Siblings Australia
Siblings Australia, over a period of 22 years, has developed a national and international reputation for its focus on supporting siblings and providing information and training to parents and professionals who support them. You will find a range of services and resources via the website www.siblingsaustralia.org.au