Poetry and care

I'm not sure what I want to say - or if I'm conflating two distinct issues here - but I know I'm angry about so many things at the moment. One of those things is the lack of respect for, understanding of, and funding of social care. 

I worked in the voluntary sector in social care for many years, largely with older people and (informal) carers. Loss was an underlying, if not manifest, feature of the lives of those I worked with - loss of independence, health, dignity, and loss of self and/or a loved one. Some dealt with this calmly, positively even, some didn't. Most struggled to express how they were feeling, or kept quiet about it, but at some point, broke down in anger or tears. 

There was a lot of 'I used to be able to... but now I can't.'

Some people write poems about their experiences of disability, illness, loss of independence, or about their experiences of caring for and/or losing someone. Why? Because they want to express or understand how they're feeling? Because they want to be heard and understood? As a memorial to a loved one, or to the part of themselves they've lost? As a way of fighting back? As a way of grieving? As a way of saying 'I used to be... but now I'm not.'? 

We struggle with expressing how we feel - in life and in poetry. As a disabled, sick or cared for person, there may be a balancing act we try to sustain between wanting to still appear independent, positive, in control, and allowing ourselves to look vulnerable and say how bad we sometimes feel.

As a carer, the balancing act may be between wanting to express that we care and love, and suppressing the frustration, resentment, guilt, we may sometimes feel.

There is a pressure to be positive, even when going through hell. Because positive people fight on, put on a brave face, smile through the tears, and are inspirational. If you say the pain is unbearable, the loss of dignity is destroying you, that you can't cope any more, then you're at risk of being seen as whining, weak... 

I'm not suggesting that positivity is bad - it can provide comfort and hope to many, but it can, unintentionally, mask some very harsh realities and lessen people's perception that there are a very large number of people who really need help.

There are acclaimed poets who write about these things, and others - often carers - who make no claim to be poets, but write their feelings in poetic form - and both can help others to understand in their own way.

Where am I going with this? Can poetry make a difference? Can the personal show a broader truth? Can the personal be political? Not if poets and occasional writers of poems are not allowed to express how they're feeling because it's either seen as whinging or as not good poetry. If people who write poetry succumb to the pressures to be constantly positive, how will anyone ever know their truth? How will people know change is needed?

Because people need to know what it's like for people with disabilities and loss of independence and dignity (and all the conditions that require care), because if they don't we will continue to show the total lack of regard for them and for social care in this country which we are currently displaying. Social care is by no means the only issue that needs addressing - poverty, health care, mental health... are equally in need of attention. And poetry is obviously not the only, or the most important, way to change things, but it could be part of it. If we let it.