I don’t exactly remember the moment I became a carer. There was no conversation, no handbook. No one told me how to navigate the systems that would shape my dad’s life. All I knew then was how to be his daughter. And somehow, I have never quite felt like just a daughter since.
I have learned to navigate decisions made about my dad, sometimes without him. For him, these are not abstract policy changes or figures on a page. They can disrupt the life he has adapted for himself. And they can disrupt the life I have adapted around him. I sometimes think about the ways families adapt their lives around disability. Not through one big decision, but through many small ones: the plans we change, the things we learn, the expectations we adjust and the future we quietly reimagine.
My experience is only one example. Family caring does not look the same for everyone. But many of us share something: there is a part of our lives that others often cannot see. People may see a support plan, but not the hours spent putting it into place. They may see a person receiving support, but not the family member or close relative coordinating, advocating and coping with the uncertainty behind it.
There are places where persons with disabilities and their families are supported well, and I have, at times, experienced the difference that good support can make. But we cannot take progress for granted. When support becomes harder to access or responsibility shifts towards families, it can feel as though we are taking steps backwards. This is what I’ve recently experienced with my dad: once again we are expected to fill the gaps. And this feels extremely exhausting: fighting a battle we should not have to fight.
Governments have a responsibility to recognise and support family carers, rather than treating them as an invisible resource. At the same time, support can come from peers, local communities, disability organisations and civil society. For me, finding a friend who is going through a similar experience has been invaluable: sometimes the best support is simply knowing someone else understands.
These networks matter but they do not replace public responsibility. Families and communities should not be expected to fill gaps left by governments.
People with disabilities and family carers deserve better. As a society, we can and must do better.
That’s my experience and my opinion. What’s yours?
About the author: Zoé Lardou is part of the COFACE Familes Europe secretariat in Brussels and works as a Education Programme Coordinator for the LINK Programme.
**DISCLAIMER: All opinions in this article reflect the views of the author, not necessarily of COFACE Families Europe**
