1 The PIP Process: The Journal

Hello dear reader.  Something I have always tried to do is to take positives from difficult situations.  Its one of the things that, at risk of sounding very old indeed, has got me where I am today.  So I have been reflecting on my experiences of the PIP process, and how best I can make a constructive contribution.  The feedback on my blogs has been very kind, but that doesn’t seem enough..I still feel the need to make a tangible contribution.

This particular idea has been inspired by Fran, who has been working really hard on producing journals of her own.  ‘Why not do a guided journal for the PIP process?’ she said to me one evening, and that really hit home with me in a good way.  Having done some research on it, there are lots of great guides produced by organisations, which this journal can refer to, but it struck me that there was something missing.

This something was a bit of a first hand perspective, and a guide that could effectively function as a bit of a companion to the PIP process, trying to break it down, and to help people record information on the form in particular, that was relevant when it came to completing the application form.  The application is long and complicated, but if broken down, can seem a lot more manageable.

So this is what I am working on.  Since talking about it on twitter over the past couple of days, this project has already taken on a life of its own, so I hope that it will be helpful when it comes to other people who have to go through the process.  I know that from my own experience, a voice of someone who had been through it and got to the other side was really useful, and I want to capture that.

I’m also looking to test early drafts and get feedback from people, so that this is something which hopefully hits the mark.  I’m trying to set up a bit of an informal testing group so that we can explore things together.  This project is a bit of a personal venture, so I won’t be looking to formally partner with any organisations to do it, and my intention is to make the product free of charge so it is accessible.  Unfortunately, this means I also can’t pay anyone for the time they take to feed in their views, but I am hoping that the promise of a useful product is enough.  What I will do is set up a mailing list, so that I can keep people posted about any updates

I’m not in a position to comment on timescales at the moment, as I’m concentrating on trying to get a decent journal out in an efficient timescale, as well as juggling a few hats in life (don’t we all!). The standard disclaimer applies, this is a purely personal project unconnected to any of those other hats, and the views expressed within it will be purely my own, but then you knew that already, yeah?

If you’d like any further information, please send me an email via the contact me page, and I’ll do my best to get back to you as soon as I can 🙂

6 The PIP Process: Part 6 – The verdict 

So after my assessment I have had a wait which has felt like forever. Thanks to the enduring support of people from Twitter, I knew roughly what range of wait there was to expect. It still felt like an endless one though, and I’ve got off lightly compared to some.

Recovery time was needed from an assessment which left me feeling fragile and insecure. I still do to a certain extent, which is part of the legacy of the PIP process which there isn’t really any formal mechanism for dealing with. The assessor leaves, with yourselves and those around you left to pick up the pieces.

For ages now Fran has been intercepting the post. We knew that the arrival of the verdict was fairly imminent as a couple of weeks previously, we’d had what seemed like an utterly pointless letter telling us that they now had enough information to make a decision. Given the assessment I’d experienced I wasn’t surprised about this, but I was also relieved.

I was in the shower when Fran banged on the door. ‘It’s here, and it’s ok. It’s ok. It’s ok!’ We were both in tears. I had got a result that was consistent with my DLA, and a long period of review. It was an outcome that I thought was fair, and I wouldn’t need to go to appeal, which I was very surprised about, as that’s what I was expecting all along.

There was a mixture of emotions. There was relief. There was reassurance that things were as I saw them and felt they should be. There was also a lot of guilt. A kind of survivors guilt. This is something I’m still experiencing. I feel so bad for those whose outcomes were not what they want them to be. I feel bad for the continued waiting that they are going through.

So whilst my own process is over in the short term (that is unless the goalposts are moved again as with DLA!) I am determined to keep raising awareness about the nature of the process.

For me, the right outcome has been reached, but by means which are totally wrong. The process is a damaging, inaccessible and costly one, which is still not fit for purpose. That a just outcome was reached in my case does not change my view on this. If anything, it reinforces my view, given the extensive process that I have experienced, and the extensive extra support (both practical and psychological) that I have needed to complete the process.

My own next steps are to use my experiences to hopefully help others in a personal capacity. As I write this, I’m fortunate enough to be going on holiday for a few days. When I return, I’ll do so with some further reflections and practical suggestions.

2 The PIP Process: Part 5: The Assessment

Hello Dear Reader.

I had my PIP assessment on Friday (8 June 2018) and it is a day that will remain in the memory for a long time.  In writing this post, I must make 2 things explicitly clear:

• That, as with all my blogs, the views I express here are purely personal ones (and not those of anyone else)

• The following comments are based on my memories of the assessment, and of written notes taken at the time of the assessment, only. As a consequence of recording the assessment, I had to sign an agreement that states I can only make use of this for personal reasons.

Some context

Its fair to say that the process so far has been a long, difficult and stressful one.  The prospect of the assessment provoked real fear and anxiety, so much so that I had asked for it to take place in my home, to give me a degree of extra comfort from being in a familiar environment that I knew was accessible to me.  Whilst not being thrilled at having the assessment take place in my home, which is a private space, it represented a preferable option to attending an assessment centre.

A false start

I was startled by a very loud set of bangs on my door on Monday. Worried that there was something wrong, and not expecting any visitors, I made it to the door.  I opened it and was greeted by “Hi, I am [assessor name] and i’m here to do your PIP assessment!”  I was amazed and shocked in equal measure.  I hadn’t been given any notice of this by any means.  I had not had the time to prepare for the assessment and I was on my own.  I explained that this must be a mistake as I hadn’t been given any notice, and the assessor suggested that they could come back at another time.

I then phoned the DWP to explain what had happened, who in turn said to call Independent Assessment Centres (from what I can gather this is a new name for what used to be ATOS healthcare) and explain.  They explained that this had indeed been an innocent mistake, and the assessor had got their diaries mixed up.  They were due to come on Friday instead.  The letter confirming this arrived 2 hours after the assessor had first been at my door.

Second time around

Friday rolled around.  The assessment was due to be between 10 and 12.  I waited in the front room from 0930.  I felt sick and had been unable to eat since the Thursday afternoon.  After an agonising 2 hour wait that felt like 2 years, the same assessor arrived.  I was terrified. Would it be as bad as all the horror stories I had heard, or would I be fortunate enough to get one of the nice assessors that I heard were out there?

I was literally shaking with fear for the first half hour of the assessment, and wasn’t able to make eye contact at first.  This improved a little later.  I sat in the chair as rigid as a block of ice, my body tensed up with fear throughout.

I had a companion with me, who was able to take contemporaneous notes of the assessment, as well as supervising the tape recording onto the old 30 minute tapes and identical tape recorders that had been purchased especially.

The assessment began with a social history, which seemed to take forever.  Reading through the notes, I had to give a complete educational history from the age of 2, which as I’m now 35, didn’t really seem relevant.  After all that, we went through the sections of the form.  I literally had the form in front of me to assist me.  I was also asked how the form was filled out, and when I replied with the help of the CAB, was asked why this was.  As previously documented, the form isn’t an accessible one.

Feeling cross examined

The pace of the questions was relentless.  So much so that I asked the assessor to slow down to give me time to process the question being asked!  I also had to make it clear when I wanted extra bits to be added in.  Not easy when you are shaking with fear.

The nearest description I can get to the assessment is one of a mix of cross examination and my PhD viva.  Having completed the written exam, I was now doing the oral component.  It felt like every aspect of my life was examined.  The long, 40 page form was a mere starting point.  We literally went through the form section by section, bit by bit, examining each part in forensic detail.  Great care was needed, as there were more than a few leading questions that I had to correct to try and ensure the assessor was able to get an accurate picture of my impairment and the impact it had day to day.

There were also odd questions. Questions about hobbies, and weight and sleep.  Tricky questions were asked too.  One question in particular was about how far I could walk and the range of distances.  I could walk the lower distance, but not without pain, not repeatedly, or without a rest, or safely.

I was asked how long everything took.  I had to give approximate timings for everything. I had to account for my movements, how the house was adapted, what a bad day looked like, what a more ‘normal’ day looked like. I had to go into a lot of detail about my mental health. About how I showered and how I washed.  About how I went to the toilet, and cleaned myself up afterwards.

Whilst I appreciate some of this detail was needed, I felt much of it wasn’t, and bore no obvious relationship to my life.  It felt intrusive and demeaning at times.  I wasn’t expecting the amount of detail, so had to check that the person who had attended with me was ok afterwards.  Hearing about everything ranging from my darkest mental health days to how I went to the toilet wasnt what I expected.

Questions were also asked repeatedly, using basically the same question in different ways in different parts of the assessment.  The assessment as a whole took about an hour and a half, concluding with a muscle based assessment.

An assessment of the assessment

Using the notes that were taken and the recollections of the assessment, I reviewed it with someone that I trusted, as I needed to get another take on it. They said they were shocked at what they considered to be an aggressive, intrusive assessment, which they felt was designed to catch me out and trip me up.  This verdict was consistent with the anecdotal stories I had heard, and some of those published in official reports on PIP.

What did strike me was what a profoundly negative impact the assessment had.  I have previously described PIP as a passport to dark places.  The assessment took me lower than that and then some.  It was a reminder of everything I couldn’t do.  I felt on trial and under suspicion.  It will take me some time to get over.

What next?

The assessor didn’t give any indication of what the report might contain.  In any event, the final decision isn’t taken by them, but by a case manager who reviews the report and any other evidence gathered.  I will be notified of the outcome in 4 to 8 weeks.

The wider story

At this point I am reminded about how lucky I am to have had the education I have, and to have a reasonable amount about me to cope with the process.  And yet it was a struggle.  As with the form, a struggle for an Oxbridge graduate with a PhD.  If I found the assessment this challenging, what of others?  How is the assessment made accessible for those who struggle with such processes?

I am left with the feeling that there must be a better way.  Thank you for reading.

4 The PIP Process – Part 4: A passport to dark places

I catch myself with my fingers hovering over the keyboard once more.  Why? Because I have chosen to write not only about PIP again but with a particular emphasis on its adverse impacts on my mental health.  To put this into some context, blogging isn’t an easy thing to do. Particularly when writing about things of a personal nature, and especially when those things are sensitive. I love writing.  Sometimes though, when it is just you and a blank page looking at you, cursor flashing away, it can feel daunting.

A health warning

A bit of a health warning here.  This blog might not be an easy read.  If you’d rather not go beyond here, I totally understand and have been there myself.  Be compassionate with yourself and don’t read on.  If you feel able to, then feel free to carry on.

Some context: My own lived experience with mental health

Though I have written on my mental health before, it still is a tricky one.  That I am gingerly putting pen to paper now is a tribute to my courageous wife.  I told her that I was thinking about writing on this topic and was worried about it, because of the stigma that, unfortunately, still surrounds mental health.  She smiled at me and said ‘but Chris, it is for that reason why you should write it!’ So here we are!

In terms of my mental health, I have lived with depression and anxiety for several years.  I have had a couple of very difficult periods with it, and have been on antidepressants for over a five-year period.  During my first period of difficulty, whilst I was writing my PhD, one of the perverse benefits of being in a particularly dark place is that I had lots of help, for which I thank my lucky stars.  I don’t think I’d be so fortunate now.  I had two years with a brilliant therapist, who was able to give me the tools to unpick a lot of things, re-examine some core beliefs, offer a good bit of challenge along the way.  I had chosen to make life difficult for myself, as, probably due to my own lack of self compassion and regard, I refused to take anti depressants.  Those health information leaflets have a lot to answer for.

My personal take (and no, I’m not a clinician, so feel free to disagree) is that once you have had depression and anxiety, it stays with you.  It’s the ability to manage the symptoms which matters.  It is things like PIP that pose a challenge to the coping strategies I have developed, particularly as a result of what the process requires.

PIP as a passport to dark places

Let me be completely clear on this.  I’ve done many difficult things and successfully negotiated them.  PIP is right up there.  It has probably been harder to complete than my Masters from Cambridge, and could yet rival my PhD depending on how things go.  I have no doubt from my experience thus far (and its the early days!) that the way the process is designed is deliberately so in order to put people off from applying.  It is deliberately inaccessible, and one of the most technically complex processes I have experienced to date.

Due to its unflinchingly personal and clinical approach, the PIP process is also a great passport to dark places.  I understand that it is important to have an overview of how my impairment(s) impact on my life.  It is the way the process goes about them that isn’t right.  I have previously described PIP as an exam on everything I can’t do.  The consequence of sitting that exam is that you are left with a reminder of exactly how disabled you are and how difficult life is.  You question yourself.  You arrive at the realisation that a so called ‘good day’ is one which is marginally less difficult, and a ‘bad day’ is when you can’t get out of bed, except to struggle to the toilet.

When embarking on, and enduring the process, it feels like being Humpty Dumpty.  You have a great fall, and nobody else can put you back together.  That is left to you.   To date, I haven’t experienced any measure that is there to make the process a little less uncomfortable to complete, a little bit more human.  It remains to be seen whether any such measures exist.

Then there is the waiting.  My form has been gone a week, after being sat in my car boot for two.  Only the rapidly approaching deadline forced me to take action, and that consisted of me asking someone else to post it for me.  Every day now I dread what the post brings, which I am sure will be a call to an assessment process that I expect will be every bit as bad as the form.  That waiting, though an inevitable part of the process, only adds to the difficulty.

I should add at this point that I am lucky to have a great support system and am nearing the completion of a two-year counselling course that has been immensely helpful in allowing me to both contend with and contextualize the process.  In fairness, I do over think things (its one of the things that my anxiety specialises in!) but I wonder how anyone without access to that support gets on with the process.

I have said it before, and i’ll say it again…surely there has to be a better way to conduct a process than this one?

4 The PIP Process – Part 3: Writing Away my Dignity

Well dear reader, I can only avoid the dreaded form for so long.  I have previously described the PIP form as an ‘exam on everything I can’t do.’ In most fair exams (and I’ve sat my fair share, and marked a few too!) the objective in setting and sitting them is to find out how much people know, and give them a chance to show this.

And then, there is the PIP form. A very different exam.   I shake my head as I write this, but this is a form so impenetrable that I could not complete this on my own.  How can this be right?  So, following lots of good advice, I gingerly picked up the phone to the Citizens Advice Bureau (CAB) and made an appointment.  That phone call was so pivotal.  One of the many sinister aspects of the form is how it has led to me questioning fundamental things about myself.  Simply put, the form messes with your head.

On phoning the CAB, I was met with a response which was understanding and knowledgeable.  Yes, the form is hard to fill in, yes you are right to seek advice.  Perhaps most crucially of all – no it isn’t just you, and you are not on your own with this.  I was reassured, and my resolve topped up.  After all, filling in the form is only the mere beginning of a process that could take months.

So I head for the appointment.  I was met by someone who I’d never seen before, but who set me at ease.  Yes, the form is horrible I was told, but I can help you through it, and we will fill in the form today.  Avoiding it (the form had sat in my car boot for a couple of weeks!) was no longer an option.  At this point, I had to make a conscious decision to switch my feelings off.  I had been given some advice to treat the form like an academic assignment.  The value and reality of that advice hit home now.

At this point, dear reader, I want you to imagine that you are sat in front of a stranger with a big form.  The results of this form will have a fundamental impact on your life, so you have to get it right.  The following are the topics on the form:

• Your impairments, and how long you have had them
• Any tablets or treatments you are having
• Whether you can cook or prepare a food/meal
• How you eat and drink
• How you manage treatments for any conditions or impairments you have
• How you wash and bathe
• How you go to the toilet
• How you get dressed and undressed
• How you communicate with others
• Your reading and writing [How you complete this form if you can’t read or write is beyond me!]
• How you mix with other people
• How you make financial decisions
• Going out
• How you move around

Essentially, the form requires you to strip your life bare.  It is at this point you perhaps see why I had to switch off.  Had I thought through how this exercise actually felt, I couldn’t have engaged with it, or with the person who was helping me to fill it in.  As the form was being completed, my dignity was being written away.  Even for someone who is used to describing my impairment and its impacts to others, this form felt intrusive.

Now for the science bit. I had heard there was a knack to completing the form.  There is.  Behind each part of the form, there are descriptors that inform how the form should be scored in order to work out the levels of any award you might get.  You have to decide for each part of the form:

• How long it takes you to do the things described, and whether this is ‘reasonable’
• Any help or prompting you get from others
• Any help you need but don’t get (what?!)
• Any variation in the activity (whether you have ‘good’ or ‘bad’ days)
• The impact of doing the activity

You then need to look at the descriptors to see what you think best applies to you and write your answer to that using the above criteria.  Are you still with me?  Yes, its complicated.

You also have to make sure that the form fits together, as bits of the form overlap and any inconsistency will count against you.

The form took several hours to complete.  Mentally, I then had to build myself back up.  Even for me, the form had bought up some surprises.  Things I had done, coping strategies I had developed had to be included in the form.  It took me a few days to get over having the form filled in.

Again, I have to say that the advisor I saw was brilliant, and juggled the complexities of getting the form done, whilst being understanding and patient.  Oh, and he also had to hand write the form for me, with my input.  My own handwriting is awful, and there is no electronic version of the form available.  Just another inbuilt barrier and a further feature of inaccessibility in the process.

So I came away with a completed form.  I then went to see my doctor about it, as they will get a letter too.  I am fortunate to have a GP who has taken the time to me.  As I sat in the surgery, I reflected on the emotional and financial costs of this system.

It seems wasteful, inaccessible, and inhumane.

1 The PIP Process – Part 2: The form arrives

The wheels PIP process are definitely turning.

There was a big ‘thud’ as the post arrived through the door this morning.  My heart sank, and pulse quickened, as I suspected I knew what this would mean.  I was right…my PIP form had arrived.  I had been warned about the length of the form and about what to expect, but nothing quite prepared me for the reality of the form.  It sits beside me as I write this, the deadline for the return of the form glaring out at me from its box.  In this blog, I want to talk about the impact of the form arriving and the effect that this has.  I’ll talk through completing the form in a future blog, because, as for reasons that will become clear, I’m not about to complete it yet.

It reminds me of an old exam booklet, complete with instructions about what to do and how to do it.  Except at 40 pages, this form may take a little longer than the traditional 3 hours to complete.  At this point, I want to say a big thank you to those who have reached out to give me words of encouragement and support.  Rest assured, I’m not completing the form without some serious professional and informed advice from a variety of sources.

As I flicked through the form, the feeling of an exam stuck with me.  I felt overwhelmed.  There were some easier questions about who they should contact (I had already given this information, but I suppose some duplication is to be expected.)  The form though feels like a missed opportunity, and as if there is some magic spell needed to unlock the code around it.  At first glance, I don’t even know where to begin and just feel very, very sick.

Lets put this reaction into context.  I am blessed with a good head on my shoulders and have a masters from Cambridge and a PhD.  I clearly have at least a reasonable command of the English language and am used to navigating systems.  However, this form left me feeling stumped.  Whilst I don’t claim to be a genius, my question is, if I’m struggling with the advantages I have, how the heck have other people gone on?

The other thing about articulating the impact your disability has, is that it can be quite tricky.  I have had CP from birth.  When I first talked about the form with someone, I went through a lot of the adjustments that I had to make in everyday life that are second nature to me.  These will all need to be unpicked and put into the form, which I presume will then be assessed by someone with no understanding of my particular impairment and how it manifests itself in my case.

As the form continues, I feel as if I am almost on trial – “tell us why you can’t do this” “tell us how long it takes.”  To me, the form also has a kind of sinister tone to it, a kind of medical model writ large approach that feels deeply uncomfortable.  Whilst having to disclose details of an intimate nature it itself also second nature, somehow this feels different, as if I have to show I am ‘disabled enough’ to merit the vital help I have had throughout my life to this point.

The form also cuts against the grain to me.  I always try to be positive in my outlook and approach to life, to try and focus on what I can do.  This form just feels a bit like an exam on ‘everything Chris can’t do.’  Then there are the reminders on the form – to include all my evidence, to not delay, and to ensure I do everything I can to include it as “delay in receiving evidence on which I intend to rely” might throw a spanner in the works.  Also, is it just me, or does that wording sound a bit like a police caution?

Still, there is hope.  The form will get done..and if all else fails there are appeal routes.  According to latest statistics, almost 80% of tribunal decisions go in the claimants favour. With figures like that, it’s almost as if the system is designed to deter people from claiming in the first instance, and reward persistence.

Sources of support for the PIP process

I have received lots of helpful tweets on where you can go for help in filling out this form.  I’ve not personally used any of them yet so can’t recommend or comment further, but these include:

• Citizens Advice
• Benefitsandwork.co.uk
• Third Sector organisations
• Your local MP

1 The PIP Process: Part One

This was the text I woke up to on Friday from the DWP. Upon reading it I felt sick. I also felt patronised (as if I needed telling to fill in the form carefully!) and intimidated (fill in the form or else you won’t get the money that you need to meet the extra costs that come with your impairment.)

In a sense I am one of the lucky ones, in that I have not been asked to go through this process until now. It’s important to outline the psychological effect that PIP, and the prospect of this change, has had though. The problems with the PIP assessment process have been well documented and the worry about having to go through this process has been at the back of my mind for literally years.

Imagine waiting for a letter you have wanted to come through the post. Each day you await for the arrival of the mail that day with a sense of keen anticipation. You might even look out for the person delivering the post and feel a little surge of adrenaline when you hear their footsteps or the doorbell.  Now imagine that this is a letter you have dreaded getting. Swap that excitement for fear. This is what waiting for that letter has felt like.

I got this letter on the Thursday before Easter. Or more to the point my wife did. She’s been keeping an eye out for the post for years too. She saw that the letter was from the DWP, guessed what it might be and opened it for me.  She was then able to tell me, very gently that the letter had arrived.

After calming down slightly, I picked up the phone to begin my claim. I wanted to at least have started the ball rolling before Easter. I captured how I felt after the call in the following tweet:

I’ve always been told that first impressions matter. You set the tone, get it right, and it establishes trust and helps to build good foundations. I’d heard the horror stories with PIP. I’d read the critical reports and tweets and news stories. They’d have made sure everything was thought of and ran smoothly now, right?

I was left shaken and literally shaking after that first phone call. The failure to be able  to even answer basic questions like ‘what comes first, form or assessment?’ (turns out it’s the form!) gave me no confidence at all. 

At times the call also resembled a police interview under caution as I was warned that I had to be accurate and warned about fraud at least twice. The impact of this is that it ramps up the nerves.   I felt like I was under suspicion and being watched.

I was also struck by the technical nature of the process, the questions involved and what was asked of me. So much so that I talked about the possibility of using an advocacy service to help me at one point. When you consider that I have a Cambridge degree and a PhD and am struggling, what hope does someone without that background have? The process is a fundamentally inaccessible one.

I’ve also had to make an appointment with my GP. Apparently one of the things that can happen is that a medical assessment can be filled in without you actually being consulted with. I should say at this point that my GP is great and has been supportive in the past. What my GP doesn’t have is 35 years worth of experience of Cerebral Palsy and an understanding of how this condition can impact on day to day life. We’ll hopefully get to fill out the medical paperwork he gets sent together.

So now I await the form. Thankfully, I’ve had lots of support from my friends and other disabled people who have been through the process. I’m really grateful for this as it has helped me to have a better understanding of the process and what will happen next.

Let’s see what the form brings…

1 The ‘Editing Out’ of Disabled People from society

A rather sinister thought crossed my mind as I was munching my way through my Easter Eggs and hot cross buns and mulling over the arrival of the notification that I would need to start my claim for PIP.

I had seen a story that there were no school places for people with Special Educational Needs. The gravity of this, and its profound potential consequences, really hit home to me as someone who had begun life in a ‘special’ school (as it was then called) in 1985 and had the opportunity to transfer to a ‘mainstream’ school in what at the time was a brave experiment and almost unheard of when it happened thanks to some really progressive (and brave!) teachers and parents.

Following some surgeries, I then returned to the special school a few years later, before going on to mainstream primary and later secondary school.  Even at a young age I could see that both places had their own value and an important, distinctive role to play.  From there, I was lucky enough to go on to get my degree, masters and PhD.  I can say with near complete certainty though, that I wouldn’t have had those opportunities if I couldn’t have even got to school in the first place.Educational exclusion is particularly problematic and damaging to the life chances and prospects of young people.

Young people then are effectively being ‘edited out’ from the system, excluded before they can even get any kind of place within a structure that either isn’t equipped for their needs, or worse still, doesn’t want them.

Being ‘edited out’ in other contexts?

Does this happen in other contexts?  I wanted to know more.  I spent a while looking around the literature and found that this idea in and of itself is nothing new.  Disabled people had long encountered structural barriers to their progression in society.  This is, after all, what the social model of disability has told us for many years.

What struck me was the acuteness of the problems faced in the present times.  Disabled people are still contending with the consequences of welfare reform (e.g. PIP, ‘Bedroom Tax’) coupled with other things to ensure they are ‘edited out’ and invisible from public life.  There are numerous other examples of this too.  Take for example, well documented issues on public transport for disabled people, or even the campaign to remove straws from public places.  A straw is one of the most important tools that many disabled people can have, and without them, simple things like getting a drink can be a non starter.

A particularly sinister ‘editing out’ trend comes in disabled people being asked to pay for their own care contributions (something which is currently under consultation in my own local authority.) The equation is quite a simple and stark one..pay more for your own care..if you can’t afford to have the care…don’t have it and the impact on quality of life is catastrophic.  You are once more ‘edited out’ and precluded from accessing society before you even leave the door.

And a paradox…

There is an abundance of technology and mechanisms that should make society more inclusive than ever before.  The very computer i’m writing this article on is a prime example.  Therein it could be said, lies the rub.  Technology costs…and how is one supposed to afford it when eating could well be a struggle, according to recent findings.

So what to do?

There is no doubt, dear readers, that this is bleak stuff.  I hope, as I move beyond the preliminary sketch presented here and dig deeper, that there is evidence to disprove my theory, and for  my working hypothesis to be disproved….time to dig deeper.  I’ll keep you posted.

0 A tale of two narratives and the contested representation of disabled people

It strikes me that from what I see, hear and read at the moment, that there is a very polarised contest going on in terms of how disabled people are talked about, thought about and represented.  Discussion and debate over the representation of disabled people is in and of itself nothing new.  As I was researching this blog, I found a really interesting book on how disabled people are represented in the media from the early 1990’s.  Many of those representations are still with us today.  What feels different (and I emphasise that this is a feeling rather than I something which I can empirically verify or ‘prove’ as such) is the significance of the challenges that disabled people are facing in current times, coupled with the unparalleled importance of social media channels today.

So for me there is a tale of two narratives which are diametrically opposed.  On the one hand there is a ‘contribution’ narrative, which talks about the positive impact disabled people can make through their approach to life and skills.  An example of this from a few days ago was the parliamentary discussion of the role that disabled people could make to economic growth.  The report from this discussion makes it clear that disabled people have a significant contribution to make in several different ways and is well worth a read.  A further example is a channel 4 publication on the importance of disabled talent in the media industry, which in many ways is an extended testament to the progressive approach taken by this broadcaster.

On the other hand there is the ‘burden’ based narrative, which depicts disabled people must, as Colin Barnes puts it, be ‘cared for’ together with the cost and complexity that this involves.  This can take a range of forms.  There was recent outcry over a BBC Ouch podcast which, it its headline, explicitly discussed whether having a disabled partner was a ‘burden.’  The response to this will also give us clues as to how to combat this narrative, which I will return to later.

I first want to highlight a deeply troubling aspect of this narrative though: the renaissance of the medical model.  Increasingly, it is being left to disabled people to find their own solutions to their impairments.  In an educational context, I have been disturbed at the increasingly contested state of special educational needs provision.  The denial of young disabled people of access to educational opportunity due to increasing amounts of litigation is a worrying development.  Other examples of the return of the medical model include requiring disabled people to contribute to their own social care costs and fund their own wheelchairs.

Whilst I am normally quick to call for and point to a need for nuance, I really can’t see any middle ground between these narratives.   Opposing the burden based narrative in a swift and confident fashion is important.  In the case of the BBC Ouch podcast, thankfully the range and volume of response to the characterisation of disabled people as ‘burdens’ was vast.  This resulted in the offending text being edited and an apology being made.  It could easy for the medical model to ‘creep’ its way back into our default way of thinking, so it is by challenging its expressions that this can be combatted.

The case for the ‘contribution’ based narrative should also continue to be made in an assertive way.  Even allowing for my own bias, it is clear to me that disabled people have a pivotal role to play in contemporary society in so many ways. Make no mistake though that the hard fought advances that we have seen for disabled people can be easily eroded, and constant vigilance against this is required.  Long may the contribution based narrative emerge, and we all have a role to play in ensuring the ‘burden’ based narrative is consigned to the past, never to return.

0 A new approach to disability activism:Some first thoughts

This is something I have been wrestling with for a while…and something I wanted to try and make a constructive contribution with. For a long time I have observed disability activism and seen some instances where it has gained more traction than others. I have also wondered about what it means to be an ‘activist’ or a ‘campaigner’ and wanted to help contribute to this debate. 

With this in mind, I outline some principles around what a new approach to disability activism could look like. I do so with some trepidation, and with the heavy caveat that these are first thoughts. I am though of the conviction that, used with a principled approach, disability activism has far greater (and more consistent) scope to have impact than it does currently.

Principles

In this section I present a very broad brush outline of the principles underpinning a new approach to disability activism. These are that activism should be goal directed, evidence based, nuanced, proportional and ideologically transparent.

 Goal directed

Activism must have a clear idea concerning its objective(s) and how the activism intends to contribute to their realisation. Being goal directed could also help in the engagement of individuals who share a similar or common objective

 Evidence based

In order to make a telling impact, what is said must be grounded in evidence, either of an empirical or experiential nature. Being evidence based will mean that findings can be discussed with authority, rather than being dismissed as being merely purely anecdotal in nature. Evidence could take the form of a quantitative, qualitative nature or a mix methods approach as each methodological approach has merits.

 Nuanced

The term ‘disability’ encompasses a wide range of impairments and as such, any activism carried out should take this range into account. Giving due attention to nuance will help to highlight the diversity that is covered when discussing issues related to impairment and give due respect to difference.

 Proportional

A sense of proportionality matters in order to ensure the effort directed to addressing an issue is relative to its significance. Moreover, this sense of proportionality is intended to avoid disproportionate responses to an issue. To give an example, boycotting a manufacturer because one of its employees used a disabled parking space in an isolated occurrence would be, it is suggested, a disproportionate response to this infraction. 

Ideologically transparent

Some disability activism is informed by a clear ideological standpoint which can help inform the stance taken in relation to particular issues. In the policy making arena Barrilleaux et al (2016) have suggested that ideas should be ideologically neutral. 

Given the nature of disability activism, much of which draws from personal conviction and responses to government and social policy, the author doubts it is possible to separate the personal from the political. Being ideologically transparent though means that ideas can be discussed with the nature of an influential standpoints disclosed. 

Learning from history: Using the past as a springboard for the present

In writing these first thoughts, I do so in the knowledge that the disability rights movement has a long and rich history which is of import with the above in mind. Here there is work to do in order to identify and learn from past endeavours in order to inform and develop present efforts.

I hope these first thoughts are useful, and I would welcome thoughts on them. I intend to develop them in the near future. Good disability activism, in order to make the case for the multitude of issues that those with impairments are facing in current challenging times, is in the interest of so many.