Monthly Archives: August 2020

0 Disabled people are struggling. Will this change and what are we going to do about it?

Unusually for me, as I write this blog, I feel a kind of anger that I have not felt in a long time.  Why?  Because disabled people are struggling, and it feels like this is just accepted as part of our ‘new normal.’

When I say disabled people are struggling, this is me being euphemistic in some cases.  Why?  Because disabled people are dying.  They are dying because of Coronavirus.  Office for National Statistics data shows that disabled people are at increased risk of death due to Coronavirus.  It is a fact that is difficult to acknowledge, but acknowledge it we must.

Evidence suggest that in the present climate, disabled people have been, as Inclusion London put it, Abandoned, Forgotten and Ignored.  Other evidence suggests that the so called ‘disability employment gap’ is about to worsen.  As a disabled person who works, I am, apparently, a bit of a statistical rarity.  Yet now we are told that disabled people who work are more likely to be at risk of redundancy.

We need to have some difficult conversations if we are to address this position.  I say if deliberately as it might be that we do not want to as there is no longer any collective will to do so.  I certainly see no general urgency to do so.  Quietly, disabled people have endured their struggles.

Where are the voices in the positions of influence to change this?  I know a handful of diligent individuals, many of whom have worked for several years to make things better for disabled people.  Time and again though, the same people are called upon to represent us, and the weight of this is telling.

Frankly, I don’t see the next generation of disabled people emerging for the baton to be passed on to. Where are the next leaders?  What is being done to support them?

In so many ways we are going backwards, and coronavirus is rapidly accelerating this regressive direction of travel.

The question is, what are we going to do about it?  How bad does the situation need to get before action is taken?

Or is struggling just a part of the new normal?

If we are to stop this from being the case, swift and profound changes are needed in practical terms.  We also need to restore the cultural foundations of equity that have been so violently attacked by coronavirus.

What are you going to do to help this happen?  Don’t just walk on by.

0 Preparing to break the bubble

Hello dear reader,

Picture the scene. You have been in self imposed exile for a long time. Not seen family in months, basically hiding away in the name of survival. If this sounds like I’m institutionalised, I probably am. 

For someone whose PhD involved working in and around the criminal justice system, the irony isn’t lost on me.

Now the time for your very own release date has come. All being well anyway. 

‘Have you got 5 minutes before your next meeting?‘ Fran says.

‘I have 4, why?’ Ever the emotionally intelligent husband.

It transpires that they are allowing me to accompany Fran to hospital for a (thankfully) minor procedure that she has been waiting for since before Coronavirus. 

So now we have two weeks in self isolation which we have to plan for. Thankfully we are given a weeks notice to get our house in order for this. Literally. I still need to read up on the regulations. I knew that PhD would come in handy. So many regulations to read. Institutionalisation to understand. The latter is a work in progress.

Part of the purpose of writing this blog is to process what it might mean to break our bubble. I take comfort in that a) many others are doing so and b) this need only be a temporary excursion.

The odds of encountering people at the hospital are remote, and everyone going there will be tested. We too have the date for our swab tests before we can go in. A supermarket car park. All surreal, yet oh so very real. Not quite the joyous occasion I pictured leaving our bubble for.

The only parallel I can give to you dear reader is that it feels a bit like handing your PhD in for the final time. In your mind, you picture this big ticker tape parade, fireworks going off as the suitably anthemic music plays in the background to celebrate this triumph.

In reality, you deposit the carefully nurtured fruits of your labour in an office, get an acknowledgement slip, and on you go. Life goes on.

Life goes on. It must go on. It has gone on, and it will do.

We’re lucky too, to get this chance. I hope it brings to an end of years of Fran having to rely on morphine doses that would knock a small horse out.

As ever, she takes this news in her stride, with the kind of measured dignity and a long look at me, as if to ask “It will be ok? Won’t it?” We could all doing a bit more like Fran.

We don’t know that it will be ok, but we choose to believe that it will.  The alternative is too difficult to think about.

I will go and give Fran a big hug after this, I think.

Battening down the hatches

Being completely honest, dear reader, it is a difficult time to have an impairment.  The very fact I am writing this sentence is a cause for sadness, as I’ve strived to live life by any other measure than being defined by physical limitations.

Trouble is Coronavirus doesn’t care about that.

German sociologist Ulrich Beck (more of that PhD stuff again, sorry!) once famously said that ‘poverty is hierarchic, while smog is democratic.’  How right he was.

At the moment, sunsets literally shine through the smog that seems to engulf everything, their rays beaming, offering a kind of symbolic hope as they do.  A daily reminder that all is not lost.

All is not lost.  Speaking for myself, I still feel like I have much to be thankful for.  Celebrating the sunset at the end of each day reminds me of that.

As we approach autumn, our preparations for a tricky few weeks ahead step up.  We begin to prepare for the worst, whilst hoping for the best.

My strongest moments come from the solidarity of others.

Here’s to solidarity.  I owe my wife a big hug.

Take care, dear reader.