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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.

Tellin’ stories:Experiences of impairment during Coronavirus

One of the things that has struck me about the pandemic is the narratives that we see.  I know my own account, and have shared that.  I’m also lucky in that I have a (small) platform through which I can talk about my own personal experiences.  

 What of others though? There are many stories to be told.

 I’m often struck by the power of stories, and the capacity they have to powerfully demonstrate what we can learn through capturing them.  Each story has its own power and value.  Through harnessing that power, there is so much to be gained.  To me, this feels especially true at a time when it feels that there is a risk that the impacts of coronavirus on and for disabled people may be overlooked.

 What can I do though?  My resources are finite.  What I can do is use the platform I have to the voices of others.  It is my hope that through doing so, the impacts of Coronavirus for those who have an impairment can be illustrated.

 It feels in some ways like life is one big count at the moment.   Figures, projections, graphs. All have a place.  What of the stories behind the numbers though?

 This is where I hope the present blog will be useful.

 I also appreciate that stories can be hard to tell and take a variety of forms.  So I do this with no expectation other than to see where it leads.

 In doing this, I am inspired by my friends at WOWvoices, who continue to do important work to share stories of their own.  

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    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.

    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.

    Disability and employment 

    Statistically, I’m an exception.  Why?  As I am lucky enough to be in full-time work and I am a disabled person.

    It saddens me that this is the case, but the stats tell the story.  For me, being able to work means a lot.  It gives me the chance to make a positive difference, a sense of accomplishment and routine, all of which are really important.  I have had spells both working for myself (something quite common for disabled people) and as an employee so can see the merits of both.

    Working though is a choice and has an impact.  I know people who actively choose not to, or don’t have the opportunity to work.  The contribution that many disabled people make through volunteering is also significant and should be more widely recognised. It can also be a means to gain experience and softer skills needed as a bit of a stepping stone, or as an end its own right.

    The impact of work means that I have to make choices.  This weekend, it has meant doing very little at all.  I have not strayed far from bed as I’ve sought to rest my weary body.  It’s not something I like doing at all but it means I’m good to go again come the start of the week, ready to try to make that difference.

    Writing this blog has been a bit tricky, but I decided to do so in order to raise awareness.  I’d also say that the sense of fulfilment that you get from work is great.  A few people I know have been discouraged from working, which I think is a shame.  To be clear – I’m not saying everyone should work, but if you want to, you should be given the opportunity to do so.

    That said, the impact of work does have a flip side and the physical demands it can exert should not be underestimated.  Behind every disabled person there is a story and a complex range of factors that make up what is going on.  Each day can vary too depending on circumstances.

    There is a huge gap between between the number of disabled people who want to work and the considerably fewer number who have a job. Being able to work is one of the most important and valuable things in my life. I’d like other disabled people who want to experience that feeling to be able to do so.

     

    Disability and the Tory Leadership Contest

    Recent discussion of the candidates for the leadership of the Conservative party have left me with one question: What do the candidates think about disability issues?

    A snapshot analysis* of voting records and speeches makes grim reading for disabled people. The headline for me is that regardless of the winner, its unlikely to be good news.  I reach this conclusion with reference to how the candidates have voted regarding welfare issues, as categorised by theyworkforyou.com:

    Crabb Fox Gove Leadsom May
    Issue
    Bedroom Tax  x  x x  x  x
    Raising welfare benefits  x  x  x  x  x
    Longterm sickness unemployment support  x  x  x  x  x
    Council tax support  x  x  x  x  x

     

    What this analysis shows is that all candidates are:

    • Pro bedroom tax
    • Against providing greater levels of welfare support to those including disabled people

    It gets more interesting when you look at the speeches of the leadership candidates.  This shows that Gove has not mentioned disability since November 2013, followed by May in February 2014 and Fox in July 2015. 

    Arguably the two leading contenders for leadership of the Conservative party have not spoken about disability for at least two years.

    Faring slightly better are Leadsom who mentioned disability in relation to Energy policy in March of this year and Crabb.   Crabb has spoken the most of all candidates in relation to disability issues and has recently addressed disability employment issues in his speeches.

    Overall though, it appears that disability issues do not feature highly in the leadership contenders agendas. It will be interesting to see if more emerges through media appearances and press coverage as the campaigning continues.

    *A note on methodology

    In order to compile the above I used www.theyworkforyou.com.  I looked at voting records on welfare issues and searched speeches using the term ‘disability.’  Though this is a snapshot, as opposed to an exhaustive study (and thus has some limitations), it does pose some interesting questions!

     

    Brexit: Gutted and worried

    A week ago today, i’m still coming to terms with what happens and what it all means.  The purpose of this post is to share what it means for me.

    I know that as I write this my views will be contentious.  So let me just say at the outset that I do 1. Respect the result and 2. Respect those of you who hold different views.  We may just have to agree to disagree on this one, and thats fine by me.

    I am both gutted and worried.  Gutted because I thought we wouldn’t be here in lots of different ways.  We have witnessed a campaign that was frankly ugly, divisive and unhelpful. Objectivity lost in polarizing debate, a bewildering haze of claim and counterclaim crafted to be sound bite friendly.  So much for any substance. Where else would we find a debate over such an important issue reduced to such a level? I had hoped we could do so much better.

    Evident to me was a lack of leadership and quality from our politicians at a time when it was needed arguably more so than ever before in recent history.  The horrific death of MP Jo Cox bought a brief period of measured sentiment, but that was all too quickly lost.  We would do well to reflect on this.

    Scared?  Why scared?  Scared that we are in the midst of taking a leap into the unknown.  Scared because as a disabled person, I know what a devastating impact austerity has already had.  This looks set to continue with pressure on the public purse and challenging economic conditions.  Austerity has frankly been used as an excuse to target the most vulnerable people in society.  PIP, the bedroom tax, and cuts to social care funding have had a devastating impact on and for disabled people in general.

    Where was the discussion of the impact of Brexit on disabled people in the mainstream debates?

    So what now?  We must make the best of the hand we have been dealt.  We also must work hard to ensure that we find common ground, retaining respect for each other and valuing the diversity in our country.  We have to also ensure that the most vulnerable people in society are heard do not further suffer as they have done under austerity.

    I hope I don’t have to be gutted for too much longer, and that our ‘independence day’ doesn’t do more harm than good.

     

    So what?

    So another person has launched a blog?  So what?  Well.

    Writing a blog is something I’ve been mulling over for a while.  Having a voice is something its easy to take for granted, but after the events surrounding Brexit in the last few days I feel that expressing what that voice says is more important than ever before.

    This is especially the case as a disabled person?  Why?  Well the reality is that in these turbulent times, disabled people are arguably more in need of an ability to express that voice than ever before.  That said, this is just my voice.  There are many others, and doubtless many will disagree with the views I express.  To me, thats fine.  Its through constructively engaging with each other that we’ll learn and (hopefully) become more cohesive as a society when there is arguably more division than ever before.

    Even identifying as a disabled person is, and has been, something of a struggle. Why? My disability doesnt define me, its part of who I am.  I also don’t claim to speak for other disabled people who may have different experiences and hold different views.  For me though, beginning to highlight that disabled voice is of real value, and I hope that by highlighting the issues that matter to me, I can at least make other people think and raise some awareness in a positive way.