PIP Stories: What the Foucault?

The importance of theory

Let me take you back in time dear reader.  When I was doing my PhD, I had a session with my supervisors.  I had very clear ideas on what I wanted my PhD to be, and what I didn't.  I wanted my PhD to be a very practical one, that wasn't bogged down by what I thought was a lot of dense and obscure theories that didn't mean very much.

However, it turns out that far from constraining the work that I was doing at the time, looking at the work I was doing through a theoretical lense actually helped me to see what was going on in a broader sense.  In this way then, theories give us a way to view things, and a set of tools to view them in more detail.

Enter Foucault

So with some trepidation dear reader, I embraced theory, and in doing so, discovered the French professor called Michel Foucault.  He was interested in a lot of things, and though not without his critics, is widely considered to be one of the most important and influential thinkers around.

In the context of PIP, Foucault is important as one of the things he is interested in is power, how it is used, and with what consequences.

Using some of Foucault's ideas, and those who have followed him, a much wider exploratory space is opened up, which then become about bigger questions, and helps us to find better solutions.  So PIP is not seen in its own right, but as part of a broader analysis of policy and practices in relation to disabled people over time.  Consideration of how power is used also brings us to consideration of how power should and should not be used.

That is where the stories come in, and why your voices are so important.  Every story counts in this sense, and this is why I keep raising awareness about this and asking for more stories to be sent in. Each story received adds to the robustness of the work that is being undertaken, and makes any conclusions drawn from analysis more credible.

So what are you doing now?

Good question!  There is lots of reading, coupled with the things I talked about in last week's blog.  Reading Foucault is hard (his ideas are complicated, and need to be read and re read very carefully to be grasped) and a bit like a jigsaw.  

The first step in a jigsaw is gathering all the pieces together.  In the case of Foucault, his work is a bit fragmented and takes the form of translated lectures and interviews as well as texts.  There are also many others who have been inspired to follow in the footsteps of Foucault, so this subsequent work needs to be considered too.

It is early days, but having used some of this work when I did my PhD, I know that it can be really useful in this context, and critically, will help to add depth to the understanding of what is happening in and around the PIP process.

Aside from the reading, momentum is good, with over 560 stories received at the time of writing.  Each time I tweet about this work, I receive more stories from people, so it is important to keep doing so to maintain that level of awareness. More and more people are learning about this, and I'm really grateful for all the support I have had so far.  A big thank you 🙂   

I also have some important ideas from the stories I have received to date, which I'll share when the time is right. It is key that any work I do is as careful and considered, so this may take some time. I am keen to share these with you, but I also need to take time and care so these ideas are as good as they can be. 

As my mum always said, slow and steady wins the race. Here's to continued steady progress!

If you have a PIP story that you feel able to share, please click here to do so.

PIP Stories: Fire, composure and compassion

Let me introduce you to a conversation that I have had a lot of over the past few weeks.  It goes something like this:

A friend: 'So just how do you do it Chris?'

Chris: 'Do what? What have I done now...?!'

A friend: 'No, not in that way! I mean all the PIP stories stuff?'

Well.  I hope you are sitting comfortably, because now I'm about to tell you.  But first, some context!

Fire in your belly, composure in your mind, compassion in your heart

The above saying is something I always come back to with the PIP stories work, especially when the going is tough, which it sometimes is.  Make no mistake, it is my choice to take this path, but its not always an easy one to create and follow.  Thats where the fire comes in.  I just remember the stories I have received, and what they have revealed, and my resolve is restored.


Composure is needed in lots of ways, especially to make sure that fire is well used.   As I have said before, running this race is a marathon and not a sprint.  It can be easy to forget that.  As I'll shortly outline, making this work happens also involves the juggling of a lot of components, all of which need careful consideration.


Compassion.  Doesn't the world need more of this, especially of late?  My parents have been (and are) one of the biggest influences in my life.  A saying of my dad over the years has been to be 'firm minded, and tender hearted.'  Compassion is there as I think this is what the PIP process needs more of in general too.  


I'm privileged to be given the insight I am into the experiences people share with me, and one of my stand out reflections is that I think the whole process would be vastly improved if it was completed with greater levels of care and compassion.


The PIP process would be vastly improved if it was managed with greater care and compassion

The elements of the PIP stories campaign


There are five main elements of the PIP stories campaign.  which I will now outline.  Each element is equally important and inter related.


a) PR

The PR aspects to the campaign are  important to keep this work on peoples radar.  The primary goal at the moment is to keep growing the number of PIP stories, as each one helps to strengthen the robustness of the findings. Thats why I say every story counts.  Activity on Twitter and Facebook is a big part of this, along with the production of things like the FAQ and posters to help spread the word.


Recently I have also started to work with some organisations to help me spread the word too.  I've deliberately and carefully engaged with a range of people in order to make sure the reach of this work is as big as it can be and that as many voices are heard as possible.


A big part of this work is what goes on behind the scenes and I'll do a lot of talking with people to raise awareness about what is being done and why.  I've deliberately been quite transparent about this in order that people can also have a greater understanding of my reasoning, approach and future plans.  


PR also means looking at analytics to get a view of how I'm doing and writing a certain weekly blog....


b) Admin

Without keeping organised, it would be very easy to get lost with everything.  Making sure I am on top of my emails, calls, planning and to do list is key.  


c) Research

Knowledge is power, and this particularly is the case in the world of PIP.  Via the research I'm doing I want to develop a proposal for some academic work, so this means doing the reading needed to so.  Research also means looking at things like the technical guidance and the latest legal rulings on PIP.


d) Rest

I put the above in to partially remind myself to do this!  I have to keep my own batteries charged up in order to make sure that this work is sustainable.  This means making sure that I get at least some down time via breaks and time off at weekends.  Supervision is also another key part of this so that the emotional, practical and intellectual demands of these endeavours can be shared in my own safe space.



So a typical week(end) in the life of will involve the careful balancing of the above elements.  Here's to further progress as a result!


You can share your PIP story, by clicking here.  Thank you for your support with this work.

PIP Stories: Survivors guilt and unheard voices

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. 


This was how I felt after I received my own result of the PIP assessment last year.  In this post I want to focus on the 'survivors guilt' that those who have been through the PIP process may experience.  My own sense of survivors guilt is something which I have rationalised, but remains something I can put my finger on.


Though it is still too early to talk about emergent issues with any great certainty from the PIP stories I have received to date, it is fair to say that reference to the psychological effects that the process has is a notable part of some of the account received.  


Part of any good research methodology is considering the voices that might not be represented in the accounts that you receive and to take measures to address this in order to make sure that you receive a range of perspectives.


Some people have said to me that they haven't written in to me because their process was as they expected it to be, or not as bad as they had heard it was going to be or imagined it would be.


Or because they felt a kind of survivors guilt.  My message here is simple: Every story counts.  I want everyone to be heard in this, and each account has an equal value and importance.  Equally, I understand that the PIP experience is not something that everyone is able or wants to revisit.  It is really important to keep yourself safe, and your own wellbeing comes first.  I'd rather that you didn't give your PIP story than risk compromising this.


I'll say it again as it bears repeating.  Every story counts.  I want every perspective to be heard.  I want to hear your voice.

Every story counts as part of the PIP stories work.  I want every perspective to be heard.  


So what is this coding you keep talking about?


Ah, dear reader, this is a good question!  Coding is basically how you choose to approach the process of working with the stories received.  There are entire books devoted to the subject such as The Coding Manual for Qualitative Researchers by Johnny Saldaña.  This is the kind of detail that matters.  It is a bit like going on a car journey.  Sometimes you can just set off and follow your nose.  At other times, you need a route planner.  This is a journey that needs careful planning, so I am resisting the temptation to begin the coding process without having first carefully considered my approach.


Other developments


I have now developed an FAQ to answer some questions I have been asked about this work.  I hope you find it useful, and do let me know if you have any further queries about this work specifically.  


Lots of people have been asking how they can help, which is much appreciated.  The best (and easiest!) way to help is by sharing the call for more PIP stories by clicking the Facebook and Twitter buttons below.  Thank you for your support.


Establishing Marathon Pace – reflections on the first month of PIP stories

We’ve come a long, long way together
Through the hard times and the good
I have to celebrate you…
I have to praise you like I should

These are the opening lyrics to ‘Praise You’ by Fatboy Slim.  These lyrics sum up what has been a frenetic first month on the PIP Stories trail.  I want to give praise to all of you who have helped in a collective effort to date, as we have come a long way already.  That I write this on a new computer purchased to keep up with the rigours of this work is also partly testament to that!

In this first month, over 500 PIP stories have been received.  Each one has its own take on the PIP process. Individually and collectively they raise some huge issues and point to a live and ongoing issue for so many people.  I have been moved and surprised by the wide ranging impacts that the PIP process has, and continues to have for the many people I have spoken with on an individual and organisational level.  Efforts must continue to be addressed at achieving positive changes, and the PIP stories work is one such effort, picking up on the hard work of so many before me which it is only fair to acknowledge.

Though there has been a lot achieved in a space of time, there is also a lot to do.  This is where finding a sustainable marathon pace comes in.  Drawing on my previous experience of undertaking qualitative research, I have thought carefully about the methods used and arrangements to set up to support this work, which I hope will make it as robust as it can be.  For me, this includes debriefing and supervision from a trained professional.  In one of my supervision sessions, we talked about the importance of this work being sustainable, and setting achievable short, medium and long term goals.  I have no doubt that in order to achieve the positive changes I would like to see will take a long time.  A pace must be set to achieve this.  Usain Bolt, I am not, and never will be.  Usain is many things, but a marathon runner in not one of them. This work needs carefully pacing, and is certainly not a sprint.

Experience tells me that time will be needed – even if via pausing to think and reflect.  Regular readers of these updates will know that I am using a piece of software to identify the emerging themes from the accounts I have been sent.  This process, even with a speedy new computer, takes time and requires a careful and considered approach.  In taking this care, I also aim to do justice to those who have taken the time and trouble to share their stories with me.  As I know from my own experiences of the PIP process, shared via this blog, telling your story isn’t always easy.  I hope though that it will make a difference.  I know that every story recieved helps to add to the power of what is being put together here.  That is also why I am asking for more stories to be shared and will continue to do so.  Discussions also continue behind the scenes to ensure that word is spread as far and wide as we can get it, and I remain very grateful and humbled for the support and encouragement received to date.

It will take time to run our marathon course, but I am determined to go the distance, and achieve the positive changes that are needed to this process.

You can share your PIP story (including anonymously) here.  Every story counts.

2 PIP stories – The power of being heard

I’m back at my desk to share the latest on the PIP stories front.  I want to share with you some of the behind the scenes mechanics and a bit of an update.

Broadly speaking, there are two areas of focus at the moment.  The first is to continue with the analysis of the accounts that have been received so far and the second is to continue to raise awareness about what is being done and why to continue to grow the number of accounts received.  The current number is a little over 500, so to reach the 600 mark is the next goal.

This is a great number, but it is important not to stop there.  With each account of the PIP process that comes in, the depth of the sample grows and with it the robustness of any emergent themes from the sample.  Each PIP story really matters.

Behind the scenes

So Chris, what happens when you recieve a PIP story?  The first thing that I do is to read it as soon as I can.  The reason for this is that in a small number of instances people report feeling low in their accounts, so there is a process in place for this to help ensure that people are kept safe.

After an initial read through, the stories are electronically filed and then copied in to Word on an anonymised basis.  A separate file with a numbering system to link back to the individual accounts is used if individuals need to be contacted in future.  Everyone who has sent in a PIP story is sent an information sheet.

From there, the stories are copied into a piece of software that helps me ‘code’ the information.  This process of coding is basically about grouping key themes or ideas that are evident in the stories that are received.  Each story is carefully read and re read to make sure that this is done accurately and consistently.  This is work that needs to be completed with attention to detail and takes time to complete.  It also takes computer power – so much so that I have bought a new one to help me with this so that this work can be completed efficiently and not waiting around for the computer to keep up.

Writing about the themes that are emerging from the coding is also an important part of the process.  Because I am at a relatively early stage in the coding process, it is too soon to be able to share some of the key themes, but that will happen as progress is made.

The power of being heard

In a few instances people have (very kindly) got in touch to see how they could help, and I’ve reached out to some of the people who have written in.  One of the things that has struck me about this process is its human element.  I think from the feedback I have had, that I am listening to a process that we have all been through in one form or another is one of the things that has resonated with people.

In many cases, people have just valued being heard, and have felt empowered by the ability to tell their story, in a process that they have felt has otherwise been ‘done to’ them, stripping them of the power and agency that they strive for in other parts of their lives.

My key messages on this would be two fold:

  1. I hear you.  I am doing this to help make sure voices are heard – and I will strive to make changes as a result.  I can’t promise I will, and it won’t happen overnight – but it won’t be for want of trying!
  2. The PIP process does not define you and who you are. It is important to hold on to that.  At times, I felt unrecognisable as a result of the process.  Hold on to who you are in the widest possible sense

I have not set a deadline on the collection of accounts on the PIP process as I have previously explained.  I will be here to listen as long as you want to share your stories.  There is, of course, no pressure to do so, and your own wellbeing comes first, but if you feel able to do so, I’ll be glad to have it.

Keeping myself safe

As you may imagine, reading accounts of the PIP process can have an impact.  For me, I used this in a positive way, as each account I receive reminds me of why this work is needed, and why change matters.

I have also put measures in place to make sure I can keep my own wellbeing in place.  This is something I which I think isn’t talked about often enough, but it matters too.  To help me to keep doing this work, I have put in place a debriefing arrangement with a trained professional.

Thanks for all your continued support.  Remember you can give your PIP story here: PIP stories.

 

4 PIP stories – initial reflections

As I sit here at my desk, I write this blog to reflect on the first couple of weeks of collecting PIP stories, in order to give some wider context to what is being done and why.

The background to the call for PIP stories

I started the call for stories in response to a message I received, telling me about an assessment where someone was asked to simulate what they would need to do to wipe their bottom.  I found this shocking, the antithesis to what an assessment process where people should be treated with decency and respect.  This example caused me to wonder whether there were other stories out there to be told.

From my own experiences of the PIP assessment process, I knew that each stage of the claim could pose its stresses.  I was also keen to be able to identify constructive solutions to identify where improvements could be made to the process and highlight good practice.  This remains the case.

This, for me, is also not a political issue. It is much bigger than that. Consensus is required across the board.  There are fundamental basics that need to be in place in order to ensure that everyone can get treated in a way that retains their dignity, and allows them to be heard in a way that is accessible.

The initial response

I have been humbled and amazed by the response to the call for stories.  The opportunity for people to give their stories has clearly resonated with many.  What is clear is that the PIP process is a very live issue for people, and that the PIP experience is one which stays with them.

There was a lot of thought that went into the methodology.  It was really important to me that people had the time and space to tell their stories in their own way.  I also deliberately allowed people to tell their stories anonymously as I know that this can allow people the distance that they need to give their account.  I have also set out to be accessible in my approach, offering support for individuals to reach out if they need to give their story in an alternative way.  It is essential that an effort like this one is inclusive and allows the full range of voices to be captured.

I also recognise that not everyone is able to tell their story, or needs time to do so.  This is something I entirely respect and relate to.  It is for this reason that there is no ‘closing date’ by which people may feel compelled to tell their story before losing the opportunity to do so.

Further, I understand the questions that people may have about me, and why I am doing this.  I have adopted an open approach, and will continue to do so.  Behind the scenes, I have had many conversations across the broad church that is the disability space in an effort to achieve consensus.

What next?

The PIP stories page will remain open and we will keep sharing it.  If you feel able to do so, all accounts of the PIP process are welcomed.  I’ll also be writing to the people who have responded to date.  Unfortunately I can’t give advice on individual cases, but I can signpost to those who may be able to do so.

Beyond that, I have started to analyse the data so that themes that are emerging from it can be identified.  Raising continued awareness of peoples experiences is an important part of this process, especially as it is still a live issue for so many.

Lastly, I want to thank you for sharing your stories, and for the interest, support and encouragement offered by numerous people, which is hugely appreciated.  Whilst this isn’t an easy thing to do, I hope it will be a worthwhile effort to call for positive change.

If you wish to, you can give your account of the PIP process here.

A Life Without Limits – A Review

A Life Without Limits tells the story of the extraordinary life and times of Sir Bert Massie.  The book provides a chronology of his experiences, commencing in humble circumstances in Liverpool.  Reference to the importance of family is one of the constant themes throughout this book, and there is a very real sense that this is one of the things which kept Sir Bert grounded.

 

We then follow Sir Bert’s progress through the educational system, from his early days in Greenbank onwards.  One of the interesting features of these stories is the progressive feel to the experiences being outlined.  This is particularly the case when set against contemporary debates around current Special Educational Needs and Disability Provision, and the difficulties experienced by many parents around equitable access to services to meet the needs of their children.

 

These stories reminded me of the importance of a good education, and its capacity to act as a springboard (and its corresponding absence as a large potential barrier) to peoples life prospects.  Via recounting his formative years, Sir Bert also affords the reader a glimpse into the emergent character traits that would serve him so well throughout his adult life, particularly including his sense of humour, tenacity and perceptiveness regarding the world around him.  The ability to inject a sense of presence into the way Sir Bert tells his life story is one of the features of this book which make it an entertaining and informative read.  I found myself making the way through his account with real ease as a result of its engaging and warm style.

 

At various points in the book, I was also struck at how there seemed to be more assistance available to Sir Bert as he progressed through his life than arguably is available today.  Having access to employment opportunities through provisions such as the Disabled Persons (Employment) Act of 1944 is a good example. I found myself thinking that such measures had a very progressive feel to them as compared to the current challenges posed by austerity and welfare reform.

 

In learning about the aspects of Sir Bert’s life as he traces his way into the world of motoring via the Invacar and progression through the education system and then success in the workplace, the book also demonstrates a further feature of its value.  It is in some ways a history of disability social policy and the disability rights movement as told through the eyes of one person who played a key part of it.  In a very real sense, this book gave me a means of understanding the history of the disability movements which were the forerunners of today.

 

As the book progresses, we learn more about Sir Bert’s entry into such movements, as he outlines his journey from being a self described ‘embryonic activist’ to an influential figure in shaping government policy for disabled people.  In here, there is another gem which reveals itself at the heart of the recollections presented.  Through the telling of his experiences, Sir Bert shows us the importance of having a ‘seat at the table’, and of being able to influence others for the benefit of disabled people in the process.  Through making my way in the book, I had a sense that I could have learned a lot from how Sir Bert chose to work to make life better for disabled people.

 

I won’t add in any more spoilers at this point.  If you want to find out more – you will have to read it for yourself.  This book is a great read, and I’d really recommend it.

 

A Life Without Limits By Sir Bart Massie is published by Mereo Books, and is available here.

2 See the whole person, not just the impairment: Reflections on a good medical appointment

Hello! Regular readers of the blog may recall that over the past 4 years (yes 4!) Fran has been working her way around the NHS in various ways in the search for an improvement to her day to day life. Let me rewind a little dear reader so I can give you an overview.

Four years ago Fran had a fall and unfortunately broke her foot. She was then taken to Accident and Emergency. Rather than waiting, the usual ‘patch and mend’ approach was taken at A&E to put Fran’s foot in a cast. However. As someone with Cerebral Palsy, Fran’s body doesn’t fit the standard presentation or course of action, or react in the same way to treatment in a way that is typical.

In a conventional situation, a cast is a response to a bone break, to both ensure it is immobile and/or to correct the position of a broken bone. As Fran was in significant discomfort, the quick decision was taken to put the foot in a cast.

The problem with this was that the foot was cast in an inward position, which caused ligament damage. What should have happened in this situation is for the medical professionals involved to recognise the particular nature of Fran’s circumstances, have a specialist called and leave well alone.

So work was needed to correct the original ligament damage and the pain caused as a result. This has taken literally three and a half years as various people have tried to find some sort of solution that improved things. Fran has lost the little mobility she had before the fall, and we had to very quickly move house as a result of what happened.

It has been four very hard years with a lot of lows along the way. During this time Fran has had some awful experiences and lost a lot of confidence and faith in the medical professionals she has seen, to the point where she now asks me to go with her to make sure she is listened to.  That it requires me to go with Fran at all is a damning reflection on some of the encounters she has had.

Fast forward to last week.  We had finally seen someone who ‘got it’ – someone who took the time to listen to Fran, to get to know her, see her and work with her.  You see, because of the Cerebral Palsy, a lot of the standard medical ways of dealing with things simply don’t work.

Fran also has a very detailed understanding of the way her body works, and what her impairment means.  In this sense, she is the expert, and will always be uniquely placed to understand what is likely to work.  In this sense, Fran needs to be an active participant in her treatment and work with the medical professionals together to find what is often a pragmatic solution.

I highlight and italicize the above words as this is exactly what happened in our previous appointment.  I will keep doing so in order to highlight the good practice in what was, for me, was the best appointment we have had during these difficult four years.

Firstly, the doctor came out to greet us and had clearly read Fran’s notes to remind himself of the case and where we were up to.  In the previous appointment he had seen the whole picture and taken a holistic decision to pause proposed treatment, allowing us time to take a much needed holiday which did Fran’s body a lot of good.

During a wide ranging discussion in which Fran was listened to and given the time and space to express her views we jointly discussed treatment options and the relative merits of them.  This led to an improved decision which aims to maximise the beneficial impact of treatment as a result of a collective discussion and Fran’s views being heard.

In the appointment, Fran’s background and circumstances were included in the notes for the benefit of future people that may see her and a copy of the notes sent to Fran shortly after the appointment.  The bold highlighted elements may seem like obvious things but are those which stood out because of the number of appointments where Fran had not been heard.

Fran and I came away from this appointment feeling elated and with faith and trust in the person we are working with and feeling more optimistic about the future. The proposed course of action will mean a long few months, but hopefully ones which will see an improvement. In words that left me with a huge lump in my throat after the appointment, Fran exclaimed ‘they saw me, they saw me!’

Above all, my key messages about working with someone who has an impairment are:

  1.  See them as a whole person. Don’t just see the impairment. Take the time to get to know them and see all the aspects of their life.

 

  1. Understand that in relation to their impairment they will often be the expert, and that in order to get the best outcome, you will need to work with them.

 

Seeing a patient, not the impairment shouldn’t be that hard, or that novel, should it?

The importance of relentlessness

I write this sat in the middle of our hotel lobby in Portugal, as we have reached a little over the halfway point of the first Football for All Leadership Course in Lisbon.  Over the past few days, we’ve had the privilege of hearing from some fantastic speakers at the top of their respective games, and bonding as a diverse group with much to learn from each other.  Thus far, the course has provided an invaluable space to critically reflect on my current practice and continued professional development.  We have learned about a vast array of things from the personal to the technical.  I raised a rye smile when my animal based leadership profile came out as..an Owl!

A further striking feature of the course has been that despite our truly global background, with over 10 countries represented on the course from across the world, is the common issues that we all face.  A big part of the solution comes from the shared learning of our experiences, drawing from the different contexts we have, and strategies we have used to make progress.  During the course we have had a couple of visits, including to the Portuguese FA and we are heading to the home of Benfica tomorrow!  Each class has raised thought provoking questions for our current work, and how we get better in the future.

On top of all these things, just one stands out – the importance of relentlessness.  It is clear that such are the nature, scale and stubbornness of the issues that we face, that only the highest levels of determination to address them will result in a difference being made.  Sustaining such relentlessness is of course far from easy, and requires a seemingly endless supply of energy that it won’t always be easy to find.

Such relentlessness should also not be mistaken for a blunt instrument.  Moreover, part of its success will be marked by the subtlety and judiciousness of its application.  Relentlessness does not mean indiscriminately shouting from the rooftops, nor tackling every cause.  It means the deliberate application of effort in a co-ordinated away to tackle problems, with the goal of making a positive societal difference for all.  Time and patience is also required, for the gradient of progress may be a shallow one, with a few bumps on the way.  Relentlessness and resilience will go hand in hand.

The rewards are also huge (and quite possibly the stakes too!) for the progress made will help society will be a better place and contribute to solving the collective issues which will make all our lives better. I am of the view that, in times where it is arguably easier to find what sets us apart than what brings us together, it is vital that we find common ground.  Locating such territory will not always be easy, and entail the negotiation of some really tough and sensitive issues.  For me though, inaction is not an option.

We must also celebrate our successes and learn from where things don’t go quite so well, taking the opportunity to learn and improve wherever we can do so.  As time passes, we must continue to innovate and not be afraid to be bold in our approach (a point which the course has emphasised throughout) and share our progress.

I am acutely aware that I may sound idealistic at this point.  We can and will make progress though…and that is the relentlessness talking!

The Final Straw

In this blog, I focus in on current developments around the proposed ban on plastic drinking straws.  I look at this both as an issue in its own right and relate it to wider, more general matters.  In summary, I think the straw ban illustrates how the needs of disabled people are increasingly marginalised, and how this can be responded to.

Without being able to effectively convey their views using the right channels, hooks and levers, there is a risk that the views of disabled people will continue to be marginalised in policy making.

Why it isn’t ‘just a straw’

Simply put, straws are an essential for a lot of people.  My wife is one of those people. Without a straw she cannot drink at all for any purpose from the every day cup of coffee to when she needs to take tablets. Such is the importance of the straw that the availability of them (or otherwise!) has been known to fundamentally alter plans. Now I never leave home without them!

On occasions, we have been supplied with non plastic straws, especially paper ones. The paper ones in particular have almost with exception been very poor substitutes. I often think that people who suggest using them have never had to actually do so themselves.  There are other options, such as reusable straws, which have not proved to be hygienic or practical (using a public sink to rinse them out is not fun!) or comparatively very expensive and themselves impractical (see bamboo straws and metal straws.)

It frustrates me when people refer to them as ‘just’ straws.  Imagine going to a restaurant to be told you had to bring your own cutlery.  Its inconvenient and another barrier to accessing an environment which can already be difficult enough in and of itself.  For me, it is a further example of how medical model based thinking is increasingly reestablishing itself as the default position.  You have an impairment, and it is down to you to provide the solution.  This is a regressive position in my view.

Symbolism

There are also broader symbolic aspects to how the straw issue feels as everyday matter.  ‘You can just ask for a straw the conversation goes.  Of course you can, but it is how it feels to experience that which it is important to grasp.  To ask for a straw after having to ask for help to get into premises, a lower level of or a specific type of seating and/or booking may just be one step too far.

Feeling multiple layers of self consciousness due to the adaptations needed to an environment is not fun – and can deter you from wanting to bother from venturing into places in its own right.  Asking for a straw is like placing the final one on the camel back in some situations, and those layers of complexity and difficulty can lead to not wanting to bother to access the environment in the first place.  Elsewhere I have referred to this as the ‘war behind the door‘ and that struggle is a very real one!

Straws and the policy making process

I see the straw issue as being reflective of a more general set of issues about the policy making process in general, and how the views and interests of disabled people are represented.  Or more to the point, about how they are not.

On the impact assessment of the proposed ban on plastic straws the impact on the people who need to use straws is given minimal reference.  A medical exemption is proposed for those who need to use straws for ‘accessibility needs.’  The consultation continues as follows:

‘It is proposed to provide for these exemptions by allowing wholesalers to import and stock plastic straws for distribution to, pharmacies and pharmacy departments in both hospitals and retailers for supply to those that need them. We will be seeking views on whether online pharmacies should be allowed to supply plastic straws. It is also proposed that we allow catering establishments such as pubs and restaurants to provide plastic straws to customers on a specific ‘on demand’ basis.’

The framing of this exception is both interesting and problematic.  Defining the problem in medical terms means that disabled people will potentially need to have a prescription to buy their straws!  For me there is also a reductive element to this framing, neglecting the wider social aspects to these issues.  There is also a ‘slippery slope’ aspect to framing such as this I think in that disabled people are cast not as autonomous beings, but merely as patients to be dealt with in medicalised terms.

There is also an accessibility issue here.  To be able to respond to, engage with and correct such views, disabled people and the organisations that work with them have to be able to engage with the policy making process to make their views heard.  This may be difficult and daunting for many, and raises a need for training in how to work with policy making processes such as this one to ensure views are heard.

There are many layers to the important debates around the straw ban, which go far beyond face value.