Monthly Archives: October 2020

Lived experience of disability and coronavirus: Negotiating structural injustice

This blog will focus on some of my recent personal experiences and reflections of living through Coronavirus.  It uses the lens of structural injustice as recently outlined by Powers and Faden (2019) as a means to manage resistance in a sustainable way.

Lived experience

I think it is fair to say that I am always aware of the responsibility I have in various ways.  I feel compelled to make a difference, and to use the modest platform I have in order to do so. Set against a backdrop of Coronavirus, the numerous impacts of which have been well documented for disabled people, this responsibility has never felt greater.

So much so, that at times, it has felt overwhelming. I have had to find a way to be able to try and make a difference in a sustainable way, whilst recognising that, unfortunately there are all too real limits to what I can achieve.  This has been a painful process.  At times I have only been able to sit and worry about where we are and where we are headed, knowing that the world ahead will only be a more bumpy one to say the least.

Structural Injustice

Coronavirus has highlighted many things, and for me, one of those things has been that not all societies are created equally.  It is only through critically analysing the structural forces at play that societal landscape can be best understood.  Taken at face value without unpicking the underlying influences, there is a risk that action may actually perpetuate problems as opposed to addressing them.

Critical times need critical thinking.  Structural injustice, as explored by Powers and Faden (2019) is an important analytical device in our metaphorical toolbox.  I will caveat this by saying that what follows is a very coarse sketch of a complex concept.  Nonetheless, even my rudimentary understanding is, I hope, a useful one.

Structural injustice is defined as:

“unfair patterns of advantage and unfair relations of power including subordination, exploitation and social exclusion, as well as human rights violations and depravations in well – being that contribute to and grow out of unjust social structural conditions” (Powers and Faden 2019:1)

With its sweeping impacts, coronavirus creates the perfect climate for structural injustice to thrive – highlighting in particular patterns economic and political disadvantage.  In such conditions it also becomes harder for typically marginalised voices to be heard.  In other words, I view this as meaning resistance also assumes a greater level of importance.

Resistance and negotiation of structural injustice

In stark terms, the resistance offered may be in statistical terms simply staying alive for disabled people. Thankfully I have observed more developed forms of this amongst the broad church that is the disability community.

At a personal level, finding forms of resistance that are sustainable has been especially important during a long lasting period of time self isolating, which, unfortunately has no end in sight.

Powers and Faden name several forms of resistance but I think simple acts, such as finding solidarity amongst each other are missing.  As is a detailed analysis of disability in Powers and Faden’s otherwise excellent text. 

For me, there is also a balance to be found between resistance, compliance and discipline.  An act of personal resistance would have been to disregard the current climate and live the life I did before the pandemic.  That did not feel the right way forward for me though – so I have had to find ways to carve out new forms of personal discipline.  This may be a perfect juncture to introduce Foucault, but I will resist the temptation to do so.

At an every day level, maintaining a sense of wellbeing is also critical during the present times.  In terms of my lived experience this has meant focusing on ways in which I can make a difference, whilst acknowledging that there will be battles that will have to be left for another day.

It is crucial though that we use a critical lens, such as that offered by structural injustice, in order to take and make decisions in the best, most inclusive way we can.  This also means using the power of lived experience to help shape the way forward, and in so doing, make inroads into structural sources of exclusion.

Coronavirus, Mental Health and Disability: My experiences

One of the hardest aspects of the pandemic, and of my life in general, is the battles I have with myself. I have had depression and anxiety since my early twenties, and have managed it ever since. During my PhD I was particularly low and went through periods when I didn’t want to be here.

I often look back at that time and think what I would have missed out on. Meeting the love of my life, becoming Dr Chris, and a career I love are but three of those things. My point? Even if things can appear hopeless, as they did for me then, there is always hope.

One of the most challenging features of Coronavirus has been our self isolation. It is true to say that this has been our choice, but it has felt like the only safe option to us. We have watched the impact of the virus on those with impairments, seen the statistics and the particularly deadly nature of it for disabled people. Suddenly, going out to the shops didn’t feel worth the risks.

It is also true to say that this time has led to real positives. We have been well supported, Fran and I have got even closer and it has really put things into perspective. That said, this time has still has had its impact. Early on in the pandemic, I just wasn’t coping very well and I upped my dose of antidepressants and started to have counselling again.

Depression often reminds me of a duck swimming on a lake. Above the surface all can be fine, but beneath it, you have to kick furiously just to stay afloat. Sometimes you have to have a dip to bounce back, and I think this has been the case for me. Somehow, we have dug deep and I have been able to live a relatively functional and productive life.

If you are reading this too, know that it is ok for things to feel difficult, especially at the moment. We are being pushed and tested in ways which we haven’t encountered before, and asked to sustain ourselves in a totally new environment.

We have to support each other through this time. We are each others best resource, and it is through solidarity, human spirit and a compassionate approach to life that we will move through this time. Move through it we will too. We are by our very nature resilient, creative and adaptable people.

As strong as we may be though, we are allowed to waver, to have moments of doubt and darkness. It is through keeping in tune with these experiences that we can, I hope, ask for help.

Let us also remember that good mental health isn’t just about today. Our wellbeing is a lifelong pursuit and nurturing this a lifelong habit. It can be a hard path to visit, but through doing so, life can be richer.

Some tips

So Fran and I have been doing self isolation for a while now. Looking after our mental health has been particularly important during this time. Here are some of the strategies we have used:

–Getting Creative – We have found different ways to express ourselves, particularly through writing and doing crafty things and journaling. Writing I have found a particularly powerful means of expressing my feelings.

-Trying new things – it is possible to still have new experiences during this time. I asked our butcher for a ‘mystery’ item in our order, and we’ll try and put something new in our supermarket shop.

-Get comfortable – We have tried to make our home a sanctuary during this time. Simple things like candles, throws and cushions have helped with this.

-Find space – Making ways to have a bit of time to ourselves has been important. My noise cancelling headphones have been a particular blessing. Use music and film to take yourself to different places.

-Find ways to talk – I have a lot of people who have kept me going during this time. I know I can be avoidant – but through keeping in touch with others I have found vital support and energy.

Laugh – Just find a way to laugh. I can honestly say that I find something to laugh at every day.

Hope – Most important of all – allow yourself to hope. There will be better times ahead. Even if you need others to have this for you for a bit, there is hope.

Experiences of impairment during coronavirus: Exclusion, Inclusion and unheard voices

I have now become an expert in marking time.  And forgetting about time.  And cherishing time.  And worrying about time.

I have never felt closer to the world, nor more disconnected from it.  

Never more certain of my convictions, yet never wavered as much.

Always completely grateful, yet never more frustrated.

Experienced such a feeling of powerlessness, yet never felt more able to be powerful.

Seldom more worried about the state of the world, yet optimistic about the future.

All of this is just in one day.  Such is the rollercoaster of our present times.  Yet I am still here.  As I write this, the long summer days have retreated, and the raindrops hang on the garden furniture.  There is a sense of preparation, of anticipation.  Having done what we can to bed ourselves in and to hope our defences are strong enough to withstand the onslaught of a tricky winter ahead.

Allow me to sketch out some of what I see before me organised into three main themes.

Patterns of exclusion: from the subtle to the explicit

In my experience, its quite typical for a lot of things to be a battle.  Planning how to fight these battles, which ones to prioritise and which ones to come back to can be quite a complex and fluid process in and of itself.

It may seem obvious, but the exclusion I see has increased during recent weeks and months.  There are some days that there are so many fronts on which to fight the battle, it isn’t possible to even determine a starting point.  These are the days when I just have to dig deep and resist the temptation to pull the duvet covers over my head.

A good example of subtle exclusion comes in the form of straws.  How can the simple straw be a form of exclusion?  Allow me to tell you.

Fran needs a straw to take a drink. Any drink at all.  It is an essential tool.  Not having access to a straw has literally led to us going home on previous occasions.  The intake of fluids is an essential to many experiences, as well as being of practical importance.  

But there are alternatives I hear you say.  Of course there are.  We have tried a few.  Believe it or not, we care about the planet too.  We’ve tried the reusable ones.  The metal ones are risky.  Not to put too finer point on it, but having a metal object in ones mouth doesn’t mix well with a strong startle reflex.

Don’t even get me started on the cleaning and hygiene.

At a more fundamental level, this is about choice, control and the ability to access public spaces in a way that works for us.  Trust me too, that by the time you’ve got ready to go out, found an accessible venue, prayed the parking is ok and the lift works, the lack of a straw could literally be the difference between persisting in your day/night out and just going home because it is all too much hard work.

Allow people to access spaces in a way that works for them.  Don’t add another layer of exclusion in.  Viewed in this way, the humble drinking straw is either a potential passport to inclusion or an exclusionary device.  True story.

On other levels, there is the renewal of coronavirus legislation which carries with it a whole host of issues.  I imagine there will be social care battles to be had in the not too distant future. 

Then there is the outside world that I continue to largely self-exclude from. The last time I ventured anywhere was to give my car back, which was one of the last hunkering down acts to complete. This is my choice.  I’ve made it with Fran as it continues to be difficult to find reliable and trustworthy information about levels of the virus and, particularly having come this far, the rewards of venturing into the outside world don’t stack up against the potential risks.

Scope for inclusion

It is though important to say that we have a number of reasons to be optimistic.  Not least that we are still here and still healthy.  Through our actions, we’ve helped not only to keep ourselves safe, but others too.

The virus has made us thankful for the day to day stuff we might have otherwise taken for granted. Deliveries from the supermarket and butchers have become notable events, and we’re conscious of the ability to have food in the cupboard.

Solidarity too has been great, not least with Fran and I.  We have had a grand total of a week apart since the beginning of the year and in that time we’ve only had one argument, which is good going I think.  We also find a way to laugh every day too, which is so precious.  The sense of solidarity between disabled people too has been notable.

These times have made us critically reflect on our values and the things we stand for.

Who are you not seeing?

One thing which has stood out to me is how quiet the disability community has been.  This vibrant space has been quite subdued.  When you factor the above in, it is perhaps not surprising.  We have been trying to get on and keep an eye out for each other.

What this means is that greater focus is needed on unheard voices, the reasons for this, and creative mechanisms to allow those to have a view a way in which to express it.

By asking ourselves who we are not seeing, we’ll also resist patterns of exclusion and create scope for inclusion.  This is a battle that we cannot put to one side.