It’s been a good week for family carers, with two substantial articles in the Irish Examiner newspaper about the desperately pressing issues that face them: lack of rights, recognition, supports and services, and the uncertain future due to current policies that could mean even more work, with even less support. Appalling that it took the death of an 11 year old disabled girl, Emily Barut, for this coverage to happen.
But it’s been a bad week for the disability community, due to the way these articles were written.
And the growing rift between disabled people and carers got bigger as the need for disabled rights was set against the need for carers’ rights.
I am a mother of three, and a carer of two, and I am not disabled. I only have a rough idea of how these articles might affect disabled people, so I can only comment in a generalised way. But I felt very uncomfortable reading both of them for lots of reasons, despite all the excellent points about what needs to change for carers.
For a start, I’d like at least three words to be banned from articles like these: burden, suffering and misery. Can you imagine how disabled people must feel to be regarded as a burden to their carers, someone who causes them suffering and misery? Feeling you’re a burden can affect someone’s self esteem and their mental health. I’ve seen it.
It is not your loved one’s fault if you find it difficult to care for them.
Nor is it your fault.
It’s just the way it is. Some people adapt well to the role and work of being a carer. Some don’t, and I don’t see why that’s a problem. Not everyone is cut out to be a teacher, or a politician or a plumber either! Not everyone has the skills, or the personality to cope. But carers usually don’t choose their caring role, it is thrust upon them. They have no choice. So please can we ban talk of parents and carers as evil and potential murderers of their loved ones. And please stop telling carers, “it’s not about you”. We should have an expectation of a good life of our choosing, just like the people for whom we provide care.
And individuals and families should not have to care alone for children and adults with disabilities. They should be supported by the community. Invited not excluded. Welcomed, not ignored.
As for the State? In a caring society, the State would take the lead in providing rights and services for disabled people and for their carers.
So why can’t we work together to make this happen?
Because carers lives matter, disabled lives matter and words matter too, so let’s learn from each other, because our lives and destinies are often linked together, so please can we respect each others needs and campaign together to make a better future for us all. Together we are stronger, so let’s close the rift that has been growing between us, and not open it further.
Here are the two articles