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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:

CrabbFoxGoveLeadsomMay
Issue
Bedroom Tax x xx 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.