A paper heart

Thoughts from the front line by a social care key worker

Victoria wearing a maskVictoria, one of our Senior Support Workers at Fiennes House, reminds us that the feelings of social isolation created by lockdown are a lifetime experience for many people with learning disabilities.

Every day, since that day in March when we realised the real risk of the virus, we leave our homes and loved ones along empty streets and closed up businesses to go to work.

I go in, clean my hands and put my face mask on to greet the people who live here. Each day that this goes on, people are a little more anxious, a little more unsettled. Each morning, I answer their questions, can we go out today? Is Mum coming to see me today?

She might come and socially distance in the garden but only if we can source a face mask...  We can Facetime Mum and Dad, or we can surf the net for travel shows, or learn a new cooking skill with Alexa?

When can we go out again? Why can’t we go out? But they know they could get sick. They also know the whole human race could get sick.

Each morning, they respond with a little less enthusiasm, a little less excitement about what the day holds for them. So, we take our temperatures and settle down for some in house fun, safe and sheltered.

We follow the rules and stay at home. Our regular routines are on hold. No shopping trips, or bus rides. No swimming or walking the beach. No meeting our friends or sharing loving moments with our families or partners.

Chelsea, whose understanding of the world is dependent on a regular pattern of bus trips to the shopping center and Adrian, whose mental health is kept well by attending sports fixtures, are finding the long sunny days particularly difficult.

When people start to feel closed in, we go out in the car for a drive. Even this simple pastime is different, early summer in the West Country is strangely quiet. An eerie emptiness has descended on an area usually coming alive with holiday makers at this time of year.

Later, we listen to the world service on Terry’s antique radiogram. Quietly absorbing the news from around the world. Despite my initial concerns that the news might cause people anxiety (my natural instinct is that it must be better to shield our people from bad things) it is always the first thing they ask to watch or listen to. But this is their home, their choice, not mine. The people I support are adults and deserve to have their opinions respected. Much as I might want to protect them, or put my desire for a calm environment first, they are not children.

We are all in this together as equals.

As we hear the news of rising numbers of people being affected and dying of the virus, we try not to imagine what would be the consequences of an outbreak in this home. Many have already suppressed immunity or underlying serious conditions and we are acutely aware of policy around hospital admission and treatment for the people we support.

We wash our hands some more and reminisce on last year’s holidays. Then we watch the news again.

I am scared. Scared for the people we support and scared for my own children and older relatives. The people I support are not scared, the virus hasn’t disrupted their lives like it has mine. The people I support are tough and they are wise, growing from boys into men in secure hospitals or institutions. They have known ‘lockdown’ in ways we could never imagine and do not fear death as we do. They have lost freedoms, friendships and their individuality, along with so many other simple pleasures we take for granted.

Social isolation is not a new concept for many of the people we support, it was also never a choice they made. Many of the people we support, despite being some of the warmest, kindest and most intelligent individuals I have ever met, are quite used to strangers avoiding them, or crossing the road.

The terms of the lockdown we find ourselves under and the natural resistance to having restrictions on our lives are no different to how some people have spent most of their lives.   We only have to look at social media to see how people, despite knowing the risks, are rebelling against having our liberties restricted, our habits judged and having to follow pre-imposed behaviours. Everyone is facing restricted freedom and pressures to act and behave in certain ways. Luckily for us, we are not prescribed antipsychotic medication for daring to show our defiance!

The people I support may be a little quieter or a little more anxious, but they are teaching me how to live in isolation.

For the first time, I have a true understanding of how the people we support have lived, and survived, in institutional settings. 

At the end of my shift, I drive once more through deserted streets, with a quiet prayer that we make it through another night with no one getting sick and I make a promise – I will bear these new conditions with grace and dignity – the same grace and dignity the people we support have shown for so many years. I will never let myself forget that for Chelsea, Adrian, Terry and so many more, ‘social distancing’ was too often an unchosen reality of discrimination and, when the time comes to leave our homes, we will do so as equals.”

By Victoria Hoggart-Willis, SeeAbility

Vicky has worked in social care for over twenty years, with the last eight supporting adults with complex learning disabilities and behaviours at Fiennes House in Somerset. She is passionate about people with learning disabilities or autism having dignity, respect and acceptance as equals, regardless of their abilities.