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.

    Should I stay (in) or should I go (out)?

    I sit here feeling conflicted.  The cricket is on in the background.  I smile as I think about the many happy days and hours I have spent whiling away watching this beautiful game with my Dad, setting the world to rights in the process.

    Writing this, the now customary lump in my throat forms as I think of such happy times, and then remember I haven’t seen my parents since Christmas.  An unheard of gap, which we have all felt.  It has now been 22 weeks of self isolation.  154 days.

    Such a strange time.  So paradoxical too.  I can’t recall a time when I have felt so connected to people in some ways, and yet so disconnected in others.  I feel a weight and a responsibility that I have never felt in this way, to step up and to continue to raise awareness of the challenges faced by those with impairments as we experience and adapt to our ‘new normal’.

    I want to do more, but I’m not quite sure how to. I know that I try to make a difference, but it never feels enough. As a ‘fixer’, who wants to offer solutions and make a difference, this is something that is very hard to stomach. Where is my cape when I need it the most?

    Set against this is the chilling realisation that those of us who have survived thus far have defied the statistical odds.  Analysis such as that from The Office for National Statistics tells us that those who declare an impairment have much higher mortality odds than those who do not.

    It is little wonder that simple things like taking photographs of sunsets at the end of the day, and giving thanks for making it through each one have taken on new significance. I am here, yet I am also not here.

    A factor in the isolation is the climate we see around us.  I am not in a position to ‘help out’ by eating out, and find it difficult to ‘play my part’ wearing a face mask.  This less than subtle ‘othering’ of those with an impairment serves to compound issues faced around the lack of confidence to go out.  Why take a risk when I risk being confronted?

    I don’t want to wear a special lanyard either, or carry a card. I stand out enough as it is. I just want to not be the subject of unfair judgement from others.

    Frankly, the situation feels messy.  At other times I feel a strong desire to just leap in my car and head up North to see my family.  After what is now 22 weeks though it feels that this would be a rash move that would compromise the care we have shown so far.  

    So, in the deliberations about whether I should stay or go, I think the former will continue to be the case for now.

    It is in these times that we can continue to be each others strongest assets.  I can only speak for myself, and I know that these times are a struggle and will continue to be so.  They are a unique challenge that in many ways surpasses that of anything else I have done previously.  And I’ve done a couple of things.

    Compassion as opposed to condemnation remains key.  One of the most important questions you can ask someone during this time, is ‘how are you?’ 

    Reflections on three Months in Lockdown: Wave After Wave

    As I look out, the sun is shining.  Uncharacteristically so for a Bank Holiday.  Aside from that though, it could be like any other.  Except it isn’t. This one marks the start of the 14th week of lockdown for Fran and I.  This is now our ‘new normal’.  Going outside feels unthinkable.  The little things I used to take for granted, nipping to the shops, putting fuel, in my car seem so far away and irrelevant.

    Being completely honest, as I always am on this blog, it is a very bitter sweet time.  As I write this I feel guilty, as the reality is in many ways, I am in a privileged position. I am still alive, still healthy.  I have my own house, access to outside space, a hard won supermarket delivery slot.  All I really have to do is sit it out.

    On the other, I find myself looking longingly at a photo of my parents back garden.  In a photo, Dad stands proudly over my parents latest project to keep themselves busy, a newly constructed garden pond.  Dad is glowing with pride.  Despite being over 70 and having a heart condition, he is in better shape than he ever has been in many years.  Photos are regularly sent, videos and FaceTime too.  I still get to see my niece growing up.  From a distance.  From a distance.  A few times I have been tempted to head there, to Cheshire, some 160 miles away.  I know I can’t though.  Not yet.  I have to stay the course.

    In other positives, I have just been fortunate be able to take a holiday (Fran points out that I am legally allowed, but it still feels like a privilege) and proved to myself that I don’t need to be ‘away’ to take a holiday.  I even managed to go a couple of consecutive days without checking my work email.  As a combination of a workaholic and a control freak, I’ll take that as progress.

    People often ask how we’ve got this far.  I’ll let you into a couple of secrets.  They are staples that have endured over time and I have gone back to them now and over the past few weeks overall.

    Deferred Gratification

    Also known as delayed gratification, this has got me through many things, especially my PhD.  At the risk of stating the obvious, it takes quite a bit of discipline to write a thesis, which in my case was way over 100 000 words.  These words need to be thought about, planned, researched, analysed, over analysed. kicked around, drafted, polished and then written up.  This is the short version of that process.  When I used to get distracted, I used to have to remind myself that the thesis wasn’t going to write itself.  I used to imagine what it would feel like to actually graduate. The reward would come later, with hard work, through grift and graft.

    This sense of deferred gratification is what stops me getting on the road now.  I know I can’t.  When I do, and I finally get to see my family, to give them a long awaited hug, to sit in the garden and drink in the surroundings, to laugh together again, it will be made sweeter for the fact I have waited.  It is the longest I have ever gone without seeing my family.  The day will come though.

    Wave After Wave

    I’m not a huge golf fan.  That said, I find the psychology of sport fascinating and for this reason, I love the Ryder Cup.  The aspects of the team preparation are always really interesting to hear about.  The team structure and use of Captains, pairings and motivational techniques to create a team spirit in what is largely an individual game.  Over the years, the European Team have been particularly good at this.  There was one example where the Europeans were particularly meticulous in their preparation, drawing from famous figures across the world of sport.  As part of this quest to take in best practice, none other than Sir Alex Ferguson.  The slogan ‘Wave After Wave’ is used to encapsulate his famous attacking style which is designed to relentlessly subdue any opposition.  No let up, no compromise.

    So I approach this time.  No let up, no compromise.  I can be a bit up and down, and I acknowledge that allowing myself to feel the ups and downs of a wave is fine.  Fundamentally though any doubt has to be dealt with, any any lingering negativity met with a positive energy to overcome it.  You have to dig deep. And if that isn’t deep enough, dig deeper.

    It is this approach that we have also resolve the recent issues with Fran’s Social Work.  Thankfully, through a combined effort of my talking, Fran’s knowledge and diligence, and the use of common sense on the part of the Senior Social Worker, we have managed to have the review put on hold until we are out of lockdown.  So we haven’t solved it – just kicked the can down the road a little.  But at least it allows us to focus on facing more immediate challenges.  So when a problem arises, throw everything at it.  If that doesn’t work, throw some more things from a different angle!

    It is true to say also though that the prospect of further cuts due to a Care Act Easement remains a possibility.  There isn’t the space to go into detail about that here, but basically an Easement means that under the Coronavirus Act, Local Authorities can suspend the Care Act.  What this has meant in practice for some Local Authorities is significant cuts to social care which have been acknowledged as ‘deeply troubling’.

    Creativity

    I’m having to make a conscious effort to put myself ‘out there’ with friends via virtual catch ups, check ins, and even the odd attendance at an online disco has been known.  I’m also watching films, trying to get out in the garden and I even read for pleasure the other week.  Wonders never cease!

    Hope

    I have clung on to this one too. I still have hope that in the long term, whilst acknowledging there is a long road ahead, that there will be a way ahead and we’ll get through in the mean time.  There is always hope.  One of the best bits of advice I was ever given was that if things get really bad, you can always allow others to hold on to hope for you.  Never underestimate the power of hope, as part of a wider mix of good things.

    Wherever this finds you, I wish you well.  Here’s to staying the course, and staying safe.

    Reduced to tears: A social work review during lockdown

    I write this blog a day short of three months in self isolation.  I focus on the impact of an ongoing social work review for Fran during this time.  It is written with Fran’s permission.  To be clear at the outset, the purposes of this blog are to document the impact of such a review, carried out in the way it has been, at this particular point in time.  In summary, the nature, timing and conduct of the review has been unacceptable and inappropriate in numerous ways from the outset.

    I also write it because I have the ability to do so.  Between us, Fran and I have 7 degrees. Fran has a degree in social policy and has written on personalisation.  Yet still we find these processes mindbogglingly complex, inaccessible and emotionally draining.  My worry is for those who do not have the means to articulate these experiences, and the very real risk of them being worse off as a result.

    As with all I write, our experiences are just one story of hundreds of thousands of disabled people who go through processes like this every day.

    Setting the scene

     It is fair to say that Fran has been engaged in an attritional relationship with social work for several years.  Her care package, which we are grateful to receive, is fundamental to how she lives her life.  She used to use her care package in a holistic and person centered way, to enable a full set of social, professional and personal needs to be met.

    Then it got cut.  the first things to go were the social and professional aspects.  No longer could Fran use her Personal Assistants to do things like drive her to see friends when she was too tired, or attend work functions because performing effectively at a meeting as well as the return drive was too physically draining.

    Over the years, I have watched with great sadness as Fran’s life has got smaller and smaller as a result of these cuts.

    A previous review began to cut away at the personal aspects.  The PA’s do things like cook, wash and iron that Fran cannot do.  They also mean that Fran can work.  The alternative would be to not work, and be dependent on the state for support.  There is nothing wrong with this, but with support it is a matter of pride for Fran that she can work and make a contribution to society as she does so.  We have been told that we are the only couple that social workers are aware of who are both disabled, and who are both able to work.

    We were able to reverse some of these cuts to the most basic aspects to Fran’s care plan after a previous review, but only after the intervention of our MP, whose timely and dedicated intervention was appreciated.

    In summary, the support received has a fundamental impact on the safety, nature and quality of Fran’s life. This support has become more significant in recent times as Fran’s physical health has significantly deteriorated.

    Social Work reviews

    Given the above context dear reader, you’ll understand why social care reviews are the subject of angst.  Sadly, as a result of years of previous experiences, there is little trust in the social work team anymore.  What started out as a relationship with social workers which facilitated access to independence, has deteriorated into an adversarial one. The focus of reviews centres on how support can be reduced.

    Despite deterioration in Frans health, she had not had a review for three years. They are supposed to take place on an annual basis.    That there is such a significant delay is a worry.

    Quite why there is a need to undertake a review when it has been three years, and we are in the middle of a difficult period of self-isolation, is beyond me.

    Yesterday, I woke up to find Fran in tears as a result of another insensitive request from her Social Worker. This is when I stepped in.

    There have been so many ways in which the conduct of this review has been woeful that outlining them in detail would take longer than I have energy to go into now.  Some examples include:

     

    • A lack of attention to being person centered and to understanding Fran’s needs. Conducting a review when Fran cannot be physically seen is inappropriate

     

    • Setting arbitrary deadlines without understanding Fran’s current circumstances e.g. saying if there is nothing heard from Fran in 7 days it will be assumed that the care is no longer needed. This is not conducive to obtaining quality information and has been a cause of distress to Fran.

     

    • Repeated requests for information that had already been provided. There have been at least six requests for information over a period of less than 4 weeks.  At the outset to this review Fran took a day to completely rewrite her Care Plan with reference to the Care Act, which was 12 pages in length.

     

    • Asking inappropriate questions e.g. asking for the ‘rationale behind the need’ for support to maintain a habitable home

     

    • When a complaint form had been requested, supplying an inaccessible PDF form which doesn’t allow space for the complaint to be detailed

     

    These are but a few of the problems which have been experienced.

     

    As with previous reviews, the focus appears to be on looking at ways to reduce an already reduced care package.

     

    The review is still in progress.  For me it raises so many questions. What is clear though is that it feels like the antithesis of what social work should be about.  Where is the support?  Where is the care?  Not once has Fran actually been asked how she is.

     

    Is this really the best we can do?

     

    We will fight on.  We will keep shining a light on these issues.  Thank you for reading.

     

    Please Note: I am grateful for the solidarity and support we have received so far.  We have had kind offers of legal advice, requests for media interviews, and other generous offers of help.  I write this blog partly in response to those requests.  At the moment though, we don’t wish to take any more formal steps.

    Riding the Waves: Reflections on two months of self isolation

    It feels like ages since I last wrote to you dear reader.  The purpose of this blog is to outline some fragments of thought from two months of self isolation since coronavirus entered into all of our lives.

     As I write these words, I do so knowing that these events have impacted on us all in so many different ways.  I want to be clear that I do so from a position of real privilege.  I am not an NHS worker, putting my life on the line day in, day out, with what can only be seen in my view as a heroic level of dedication.  I am not a key worker.  My job is not to ensure that people are fed.

    My job, at its most basic level, is to stay in.  I write this sat in the comfort of my own house, with access to the electricity supply that powers the computer I am using, and with access to heating, food, and a constant supply of clean running water.  I am so lucky.  On the days when I feel sad, or worried, this is what I come back to.

    Brunch

    Rewind two months ago today, and Fran and I were heading out for brunch.  It was something we had been promising to each other for a long time and not quite got around to.  The car park was busy, the restaurant buzzing.  People were sat close to one another, packed in tightly, listening to the live music that was being played in the restaurant.

    It feels like I am describing another world.

    Fran and I had been watching the developing news, and were aware that friends in other countries were beginning to lock down.  

    Mindset

    At this point, dear reader, I need to take you way back in time in order to understand the present day.  I warn you that this part of the blog may not be easy to read, so if you want to skip over it, I totally understand.

    The thing is, I have always been three things: lucky, impatient, and stubborn. Oh so very stubborn.  Each of these can be seen in my arrival into the world, in January of 1983.  After a really tricky pregnancy in which I was lucky to have got as far as I did, I arrived six weeks prematurely, determined to see the world early.

    “I have always been three things: lucky, impatient and stubborn. Oh so very stubborn.”

    Truth is, I shouldn’t really have survived, and were it not for some brilliant medical care, I would not have been here at all.

    Knowing this fact has always shaped the way I have lived my life, and thought about it too.  Knowing that just by living, you have defied the odds, few things are scary or formidable.  I am aware how precious every day is, and filled with a determination to make every day count.

    Growing up, I also saw the fragility of life first hand.  I spent time in a special school before I went onto mainstream.  On so many occasions, I learned with great sadness that friends I had did not return to school and had gone, as we were told, to a better place.  As I grew up, my mum, who by sheer coincidence went on to work at the same school I had since left, visited me with that sombre look on her face and that tone of voice to deliver news.  It happened with such sad regularity that I knew what she was going to say before she spoke the words:  Someone I knew was no longer with us.

    I write these words in order to set what follows into context.  Whilst I might treat coronavirus with respect, I will not let it fundamentally change who I am, nor alter the fundamentals of how I see life.  It might change the way and how I choose to live it for a while.  Who I am though, will remain unchanged. There are some things that this virus can and will not touch, nor will it define. 

    Lessons in marking time

     It is funny how the various, seemingly tangential strands of your life can come to be useful in ways that you never imagined were possible.  The contemporary relevance of my PhD is one of those things.

    In a previous chapter of my meandering career to date, my chosen field of study was offender rehabilitation. As part of this work, I chose to speak with people who agreed to talk to me about the serious crimes they had committed.  One of the aspects of these conversations was how they had experienced what had typically been quite long spells in confinement, including a life sentence in one instance.

    Now clearly the context is very different here, but elements of this have sprung to mind of late, typically regarding how to mark spells of time which might span several years and are of a potentially unknown length.

    How do you do that? Well, in the most pragmatic way, one takes things a day at a time.  Each unit of time is carefully deconstructed and reconstructed.  Fashioned in ways to make it more palatable.  

    When I think back to some of what I heard during those conversations, my own marking of time feels so much more straightforward.

    Making the time count, and riding the waves

    Given my own mindset and the circumstances I have described, my own task is to spend the time keeping myself safe.  It is easy for me to feel powerless at times – and my way to respond to that has been to try and make the time I have count.

    Another way in which I am fortunate is that I have the work, together with the structure, routine and chance to make a difference that it offers.  Whilst it isn’t the NHS front line, it still provides a way to make an impact.  Working in disability sport, I have a great job, and am stepping up to help those I work with navigate challenging waters.

    I also write lists, lots of lists.  Lists of things I want to do, people to see, places to go when this is over.  

    There will be lots more work to do too.  One of the things I have noted are increasingly over simplistic references to ‘the vulnerable’.  There is lots to be done here in order to ensure that those with impairments like me are not lost in this talk.  We have to keep seeing the whole person.  

    “We have to keep seeing the person, not the vulnerability.”

     It is ok too to feel sad.  I have cried, felt sad, missed things.  I have also danced with Fran in the kitchen, and shared drinks with friends via virtual pubs.  I have had the privilege of speaking with and interviewing world class athletes via Twitter.  Positive creativity is a must in these circumstances.

     Faith is too.  We will get through this.  My belief in this, and in the capacity we all have to respond, individually and collectively, in the most positive ways possible when faced with challenge, remains undented.

    Look at the fundraising efforts, the collective displays of solidarity, the new outlets found for expression and invention.

     There will be costs and bumpy times ahead, but we will ride this out.  Hopefully in some ways, we will be better for it too.

     

    We can do this. Together.   

    “We can do this. Together."

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