I’m not often lost for words. Words are my livelihood. They steer me in activism, and as I stand alongside fellow unpaid carers, in the never-ending fight for better rights and for a decent life.
Now, as I survey our broken country; as I cry for the many lives (perhaps needlessly) lost; as I hear the stresses and anguish expressed by disabled citizens; and as carers face greater isolation and unimaginable pressure, I cannot adequately find words to describe my fear or my sense of hopelessness.
As we seek to regroup, to look ahead at life with and beyond the Coronavirus, that sense of hopelessness is greater. Much of the Covid response has been “done to” our families. In that process, the deepest of inequalities have become cavernous.
Those who dealt with the battering winds of austerity are now those facing a desperate struggle to survive. Poverty, poorer health and mental trauma are the legacies of this pandemic. But there is no shelter ahead….no port of safety even as the country seeks to move forward.
What does that mean for Scotland’s unpaid carers?
What little control we had over the course of our lives has been snatched from us. Meanwhile, the “great and good” are at the helm and those of us who have faced the Covid storm head on are not being allowed onto the bridge to help steer our own future. Where are the voices of learning disabled adults? Of disabled children? Of older people caring for their spouse or the many new carers created by this invisible enemy?
Fiona’s recent blog expressed very clearly everything those of us at the hard end of this pandemic have been calling for. Even from the time before Covid-19, many charities and activists had been calling for ground up policy making….an opening up of the corridors of power to hear directly from families who suffer when well intentioned policy goes wrong. Even as I write this, decisions are no doubt being made which may well determine how many of us will live, for a very long time to come. They are determining my husband’s future, even as he struggles with every aspect of this current life. They are making decisions which will make our world even smaller.
It is no wonder then that unpaid carers are angry. That they are breaking.
I won’t ever apologise for consistently calling for Government advisory groups to include our voices. As care services were cut, closed or refocused on the pandemic, carers stepped up and did more. They became the life-boat as public services battened down the hatches. Yet, they have largely been ignored in the Covid response and now, as our country seeks to navigate its way through the health and economic storms ahead, the contribution of unpaid carers remains invisible and unvalued.
Like hundreds of thousands of unpaid carers, I feel battered and more broken as I emerge from this crisis. We cannot understand the longer term effects of this pandemic – or plan for these – without the experience of those who have been hardest hit. Not just the organisations who represent them…people themselves. Their voices and their ideas.
As Carers Week 2020 begins, I want once again to reach out to politicians of all colours, at all levels of government. We stand at an important juncture in the journey ahead. We are already seeing signs of going back to how things were. Stop now. Don’t slip back behind closed doors. Open those doors and make every effort (no excuse now for having meetings in Edinburgh at 9am which carers can’t attend) to create opportunities for disabled people, for older people, for those who live alone, for unpaid carers to stand with you as you try to change our country and make it better.
In closing, I want to share the words of a fellow carer who perfectly describes how many of us feel. Let these words be the fuel to drive real change:
“I disappeared a few years ago.
When I became a carer for my son.
I felt as if I had just dropped out of society.
Off the world….”
Our fellow citizens must never feel like this again.
Our response to the loss and sacrifices of so many must be to create the kind of country which never again treats people like third class citizens.
Lynn is a full time, unpaid carer for her husband Derek who has a high level spinal injury and other complex health issues. To hear about the changes being sought by the UK’s 7 million unpaid carers, follow #realcarersweek
To join the conversation about a better, post covid future, use #samestormdifferentboat
