The harms of lockdown

Lockdown was disastrous for children with disabilities. We must never let this happen again, writes father and author Damien Lane.

Lockdown represented an unprecedented attempt to control a novel coronavirus through non-pharmaceutical interventions. It may never be possible to assess accurately the number of lives this measure saved or extended. But evidence of the costs of lockdown – particularly on health, education and the economy – grows daily. In evaluating our response to Covid-19, it is vital that we take full account of the impact that shutting down society had on people’s lives.

From the very first days of lockdown, it became clear that some groups would struggle more than others. Elderly people who lived alone were socially isolated. Parents who were expected to work outside the home while schools were closed, who lived in cramped conditions without access to laptops for online classes, or a garden for children to let off steam, found lockdown to be impossibly stressful. For parents of children with disabilities, lockdown meant having to cope in the absence of almost all of the usual sources of support.

Damien Lane has written about his experiences of caring for his son, Alex, both before and during lockdown. Alex, who is 19, has severe autism as well as a number of physical disabilities. In Kit Kats and Fishing Rods, Damien describes the many challenges that have had to be confronted in caring for his son. But, far more than this, Damien offers readers an insight into the immense value of Alex’s life and the tremendous power of parental love.

Here, Damien describes his motivation for writing Kit Kats and Fishing Rods and explains how lockdown made an already challenging situation even more difficult.

Autism

As in all walks of life, there are fundamentalists and zealots. Being fixated on one text from one particular time, they might be forgiven for the rigidity of their beliefs, but in science this is a real weakness.

The Diagnostic and Statistical Manual (or ‘the DSM’ as it is mainly referred to) is the main diagnostic tool for mental disorders, published by the American Psychiatric Association. It once had homosexuality down as a mental illness. It is now on its fifth edition – which implies revision and research. These are good things. But it also implies uncertainty and change.

The reality of autism is that you learn to live with it every day and it impacts everyone in a family. Although my son Alex is obviously impacted the most; he cannot speak and has limited understanding of many aspects of life.

I wrote Kit Kats and Fishing Rods as I have grown increasingly aware that men who are carers get far less coverage than their female counterparts. Yet the work we do is no different. Women often do the same work as men, and this goes unnoticed. But the same also applies to many men.

The experts say that although certain rules apply in all cases, each individual’s experience of autism is different. This is one of the rare pieces of good advice I have had from all the many experts I have encountered. I am still not sure whether I understand autism although mercifully, I have grown to understand Alex.

The title of my book, Kit Kats and Fishing Rods, refers to a time when I took Alex out for a walk despite having a broken foot. My wife asked how I would manage if Alex ran off. I told her I would take a Kit Kat and a fishing rod…

Lockdown and its impacts

As I write this, we have the first Prime Minister ever to have been found guilty of breaking the law whilst in office. These were his own draconian lockdown laws, introduced in a rush, with no thought to the obvious harms they would cause.

Though criminally not culpable, the Labour Party should take a long, hard look at itself. Its MPs failed to scrutinise these morally questionable laws when they were first introduced and instead became cheerleaders for lockdown.

Alex moved into supported living in February 2021. The demands of caring for him were becoming more and more untenable. It is a very hard thing to admit that you can no longer care for your own disabled child. It is even harder when his departure was almost certainly hastened by the imposition of laws that were imported from totalitarian China with little afterthought given to their ramifications for so many in our society.

Conveying the complexities of living with a child like Alex is not easy. Had I not had to do it, I am not sure I would really understand how all aspects of life are affected, right down to the smallest detail. In some ways, even before Covid-19 appeared on the scene, families like ours lived under permanent lockdown restrictions. We have to make judgement calls about when we can go somewhere, how we can go there, or if we can go there at all. Of course, our first concern is always Alex, but we also try to consider the effects his being there might have on others.

It was the spring of 2020 as I recall. At that point, we had support for Alex at home from a team of domiciliary carers. They were really good. Alex was ‘lucky’ as we were allowed to take him out during this period. He simply would not have understood why he was staying at home. Most of his regular activities had been cancelled overnight. No more swimming, no more trampolining, no more long walks in the Wye Valley. Life as he knew it was completely obliterated.

So, the term ‘lucky’ has to be used here with great caution. It also implies that he was ‘lucky’ because his disabilities made him an exception to the aberration that was lockdown.

Cardiff Bay was one of Alex’s favourite places. We usually have a lovely walk across the barrage followed by a sandwich or a cake in a café, depending on the time of day. Or it could be both! Even after losing his sight Alex loved the bay. He has great recall and spatial awareness. It’s flat and wide so he can walk on his own most of the time.

There were two carers with me. We stopped at a café that was serving drinks and snacks to people in the open air. Opposite there are some long benches. They are all well separated so that any groups sitting on them would have been naturally socially distanced from others.

We had bought Alex an ice cream and one of the carers was feeding him. It would take an order of ignorance of some magnitude not to realise immediately that Alex is profoundly disabled. But that afternoon, we met someone with that magnitude of ignorance. Sadly, he was wearing a uniform.

A Police Community Support Officer (PCSO) approached us, apparently weighed down by the burden of his equipment, and asked the carer feeding Alex if it would be possible to take the ice cream home to eat.

I was speechless. Momentarily. Alex finished his ice cream, and the carers took Alex back to the car which was parked nearby. I approached the two more senior coppers who were on patrol with the PCSO. I explained what had happened. One told me they were only protecting the public and explained that he would like to be able to go out with his family. To which I replied that it had been a good two or three years since my family had been for a day out together because Alex had attacked his sister. It’s that permanent lockdown thing again.

To be fair to the copper he listened. But he did not seem to make an effort to understand. His colleague stood silently, and I got the impression he got it a little more.

It is hard to imagine that this was Britain in 2020. Police using their time to tell disabled people to take their ice cream home. Carers carrying special letters of permission in order to be able to take people like Alex out.

All this happened within view of the Senedd, where the Welsh Assembly sits. There were signs ordering people to ‘keep two meters apart’ (sic). I wondered if they meant gas or electric!

Our lawmakers had created these laws overnight, without oversight. They then left others to have to navigate this new landscape.

I had sympathy for the police officer who tried to listen to me. In some ways we are lucky in that regard in this country. But it is dangerous to consider ‘luck’ when talking of basic rights. It is not luck that has made the UK into a country that is one of the better ones where people like Alex are concerned. It is because there have been great people before us who have campaigned for better treatment and were prepared to challenge the status quo. We still have a way to go but we are often on the right road. I only hope that lockdown becomes seen as a wrong turn on that road. A major wrong turn, for sure. But still a wrong turn.

Compassion is more important than empathy here. Most people will never feel what Alex feels. I am his dad and I often struggle, and I often get things wrong. So, empathy does not really work. Compassion can and does.

Long term repercussions

Perhaps a decline in Alex’s capabilities would have been inevitable. But lockdown sped this process up, of that I am certain. Losing nearly all his usual outlets for letting off steam meant that often our only available option was getting Alex out in the car. He used to love the car. By the end of lockdown, it was often impossible to take him out alone because of the aggression and frustration he was experiencing. He would dismantle the inside of any car he was in.

In some ways, we were readier than most families for the limitations placed upon us. We were used to it. But, over time, those limitations became ever more like a metaphorical noose tightening around our necks.

Every child was hit hard by lockdown. Every headteacher of every mainstream school in the country should be able to produce an email that at least attempts to question the obvious negative effects on a whole generation of children. It should have been written at about the time of the first lockdown. We all knew that being deprived of friends, family and often education would hit the most vulnerable hardest.

Alex is one of the most vulnerable people in our society. And we need to try and protect our most vulnerable. This was a time when we forgot that there are myriad definitions of ‘most vulnerable’ and the needs of all those people are just as varied. A one size fits all, poorly drafted law, was never going to help the vast majority of people who fit into these categories.

I watched as my boy’s behaviour deteriorated to such an extent that I could no longer take him out on my own. And then he had to move into supported living. It’s been an absolutely gutting experience. There were many factors that led to this, and you can read more about them in my book. But lockdown was certainly a major contributory factor.

Please do not let it happen again.

To find out more about Damien and his son Alex, and to purchase a copy of Kit Kats and Fishing Rods, please go to https://www.facebook.com/DadAlexAutism or email info@cieo.org.uk.

Photo by Rod Long on Unsplash.