All Posts by Chris Whit

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.

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.

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.

The Launch of the Football For All Alumni Network

Over the last few months I have been working to create an Alumni Network as part of the Football For All Programme. At our graduation yesterday I launched this network. A transcript of my remarks outlining the nature and purpose of the Alumni Network follows.

Good afternoon ladies and gentlemen.  It is a privilege to get the opportunity to speak with you today, and to use the time I have to officially launch the Football For All Alumni Network.  This is a moment of great practical and symbolic importance in many ways.  

 

I begin by saying this in deliberate fashion.  A graduation marks the conclusion of a course of study. This in itself is a great achievement, and the culmination of many months of hard work, detailed planning and collaboration.  To have a vision is one thing, to carry it out is something altogether different, as I’m sure we will all tell you from our experiences over the last few months.  

 

However, today also marks the beginning of a new chapter in our lives and professional aspirations.  We have amongst the Football for All Alumni a group of talented, tenacious and ambitious people who want to make a difference in the world of sport.  We also have a lot of work to do as a result!  The Alumni Network will be fuelled by the commitment of the members in the group and exists to provide a supportive space to engage with our peers and learn with each other as we develop together.   

 

In the time I have with you, I want to trace the journey of the alumni network, from its origins, to the work carried out over the past few months and its future.  I’ll also throw a couple of other things in along the way.  Come with me on this ride, there is a method in what I am about to say to you, and a fluency in its many tangents.  My fellow class mates will I am sure have told you about my love for those by now!  

 

Beginnings – a story

 

So how do you feel about two weeks in Portugal? My boss said to me one day. Two weeks in Portugal?  That sounds good, but I am really busy!  I haven’t got time.  I’m giving you the time he said, go and do it, it will be good to you.  I have to admit that I was a bit sceptical, but I’m glad that I did!

 

I want to tell you the story of my initial encounter with a fellow classmate, with his permission.  It is a story that has stayed with me as I have worked with others to develop the alumni network, both causing me to smile and a source of genuine inspiration.

 

Chances are that if you ask most disabled people, they will say that travelling anywhere can be difficult. Such difficulty can be multiplied when travelling internationally.  With this in mind, you will understand the relief when I found Jose in the arrivals hall at Lisbon airport, who greeted me with his characteristic enthusiasm and warmth.  Such warmth was in stark contrast to the torrential rain which we had that day.

 

There was a problem though.  I was introduced to one of my classmates, with whom I could not communicate.  This felt like a really bad way to begin to get to know someone, but what was I to do?

 

I looked at my phone, and the answer looked back at me!  I found a translator, and this was to be our means of communication for the time being.  In some relationships, there comes a definitive moment, and I believe holger and I’s came in that first car journey from the airport.  For some reason, there was a convoy of police cars that went flying past us as we travelled through Lisbon. Ceasing a chance to see if my humour would withstand international translation, I joked that they had come for me.  Thankfully, Holger got my humour and we shared the first of what was to be many laughs over the course of our fortnight.  

 

For me, the story of this encounter is a powerful one for a couple of reasons.  Firstly, it reflects how we all came together as part of the programme to solve problems, to communicate and share knowledge.  Many of our experiences as people with impairments transcended national barriers, and to be able to reflect on how we had faced and resolved issues both personally and professionally was priceless.  Secondly, this story highlights for me the importance and value of continued collaboration, and the capacity that we all have to support each other.

 

 

Though we did not know it at the time, even arriving in Portugal was an achievement.  One member of our class had never boarded a plane themselves before and had the courage to overcome a serious fear of flying to reach us.  We were breaking new barriers before the course had even started.

 

As the course went on, the special nature of the collective energy and spirit within the group was striking.  We arrived from all over Europe and beyond as individuals, and left two weeks later as a tightly bonded collective who had so much in common. As one member of the group said, reflecting this sentiment “The best part of the course was meeting people from all over the world, and the friendship this creates.  This was easily the best part for me.”  The energy and the bonds between that group were amazing.  If we could bottle it, I think we’d never have to worry about working ever again, such was its value.

 

The breadth, depth and diversity of experiences in the group was also its strength – we had such a range of experiences to draw on that we could use to help each other develop.  

If only there was a way to harness the energy over the longer term and maintain that communication!  The determination to do exactly that was at the heart of the vision to develop the alumni network.  

 

 

Next Steps

 

So how is the vibrant energy of two weeks together translated into a longer term project?  This was now the task in hand.  

 

One of the questions I had at this point was how brightly would the sparks of inspiration we had all felt during our time together fare now we were apart?  

 

There was one way to find out!  A key learning for me over the ten years I have worked in various professional disability roles is that consultation is key.  I’m still surprised at how in some instances, the suggestion to undertake consultative work is not considered as a matter of course.

 

Consultation was undertaken with the group and the response to the idea of creation of an Alumni group was very positive.  People expressed their communication preferences and gave some useful feedback.  I asked a couple of my class mates if they wanted to form a working group with me, and I was very happy when they said yes.  The support of both Elena and Jason has been important to date and I our regular discussions have always been appreciated and productive.  We have also continued communication as a whole group using flexible means of electronic communication via social media channels such as Facebook and WhatsApp.

 

One of the most interesting things about developing the group has been exploring how to work across different times, spaces and cultures.  It is here I note our American friend and colleague Kate Ward, who I have woken up at least once as I have got the time difference wrong.  I suppose she has had the last laugh at this point given the recent world cup victory!

 

Negotiating these challenges also brings opportunities as we find out how to work together in mutually beneficial ways which suit our wide ranging mix of commitments and perspectives.  It won’t always be easy, but we approach these matters with enthusiasm and a desire to continuously improve things for everyone.  A key factor here will be the buy in of not just the current graduates but those in future programmes.

 

To this end, there will be a consultation on a set of collective values and principles that will bind us together as a group. It is at this point I will look to Joyce and her experience from working in FIFA.  Consider this fair warning that I will be on the phone in the near future!  The formulation of these values will not only be a mechanism to maintain our togetherness, but also a marker to trace the evolution of the group. 

 

Throughout this time, it has been interesting to reflect on how the group has evolved itself in undertaking  project work.  One of the stand out observations I have is that how despite the hundreds and thousands of miles that separates us, how much bonds us together.  It is also at this point that I should emphasise the paradoxical nature of confidence.  Over recent months having the privilege of working as a senior disability manager at SE that I have thought about this a lot.

 

In terms of the solutions here, the distinguished figure of Professor Steve Peters gives us an authoritative place to start.  For those unfamiliar with his work, after working as a physiatrist within the health service, Professor Peters went on to work with elite athletes in various sports including cycling and athletics.  He also has written a number of best sellingbooks. In the opening to one of those titles called The Chimp Paradox he sets about deconstructing our inner thinking habits to pave a path to success.  

 

One of the important things the Alumni Network can do is to provide its members with a safe space to develop.  Having had employment positions in organisational transformation and positions in disability sport that have focussed on continuous improvement, development is something which I am really passionate about.

 

Here we return to the confidence paradox and chimps.  As professor Peters tells us, we need to talk to our inner chimp.  In 10 years working around disability I have observed the confidence paradox many times.  It is so as confidence is both the most important thing, and that which is most often lacking.  

 

To my fellow graduates, I say this.  Don’t let a lack of confidence hold you back.  Believe in yourself. I consider you, having chosen to invest two weeks in Portugal, and months carefully and diligently developing your respective projects as committed to self development too.  I believe I have the privilege of standing amongst leaders of the future, and want the Alumni Network to be a place that gives you a supportive community of individuals who you can turn to for advice, guidance and support.  

 

As we have grown, so we will continue to grow.  

 

Further, As others have helped us to grow, so too we can help others to grow. We can help others in future editions by sharing the benefit of our own knowledge and experiences from our own pioneering endeavours in Portugal and beyond.  

Speaking of the future, in the final section of my remarks, I want to spend some time outlining the future plans for the group.  Over the last few months we have been carefully thinking about what the structure of the group needs to look like in order to support its functioning and to help realise the benefits of international co-operation, collaboration and support.  We have had a consultation on the nature and roles of an executive structure, which is nearing completion.  

 

There will be an initial executive team made up of 5 people, each of whom will be appointed to set roles and elected for a three year term. This team will be announced shortly.  A President and Vice president will function as the external representatives for the group and will be responsible for the overall direction of the group as a whole.  Internally, the general secretary will be the co-ordination point for the network, and a specialist communications role will keep information flowing.  Additionally, year group representatives from each Football For All edition will be the voice of their class. Devised in this way, the structure of the executive helps to ensure an exciting diversity of voices and talents is around the table.  It is also designed to ensure that many hands can make light work, as we all have busy day jobs!

 

We have also been sharing plans for an Alumni Network Conference to take place around future editions of the Football for all programme.  The Conference will provide a mechanism for Alumni members to network, share ideas and give presentations.  Subject to being compliant with data protection legislation, we will also have a database of alumni contacts, biographies and a dedicated web site. It is here you see why we need a communications executive post, as the only thing I seem to be proficient at with technology is causing it to malfunction! There is a reason I printed out my remarks today and am not using any powerpoint slides! 

 

A recent visit to Portugal outlined plans for the Alumni Group to be formally set up as its own separate organisation, based in Portugal to give the group means to undertake fundraising, sponsorship and a clear governance structure and constitution.  The executive structure outlined has also been devised to meet and exceed the requirements of relevant legislation in Portugal, about which I am learning at pace!  We are also in the process of learning from other Alumni and sports groups about ways in which they function to benefit their members.  

 

In the longer term future, I see the alumni network growing.  To have an international network of disabled people working in sport that is led by disabled people marks this out as a special and distinctive group of people. Too often in my personal view, disabled people are talked about rather than with.  Too often are they subject to decisions, as opposed to the ones who are making and leading them.  Not so with this group.  

 

It is a future aspiration to generate income so that the executive roles are paid so as to give those people in them dedicated time and space to devote to their responsibilities.  I also expect there to be the potential for other groups within the Alumni Network structure to make the co-ordination and sharing of views more straightforward.

 

As I draw my remarks to a close, I want to make a couple of sincerely felt thank yous.  The first is to my wife.  That I am standing here today what is our fifth wedding anniversary tells as great story on two counts.  The first, and yes, I know what you are thinking is that it is amazing that we have got to five years.  The second count is to the unstinting and unconditional support, belief and dedication she has shown, coupled with selflessness in letting me forge the path I have to date.  

 

When I told her that I wanted to be a part of making the alumni network happen, she saw ‘that look’ in my eye and the passion with which I speak where this is concerned.  She simply said to me ‘if you believe it is that important, then it is, go and do it.’  There is a saying in sport that behind every team, there is a team.  On behalf of all the graduates here, I’d like to thank the team each one of us have behind us.

 

No set of remarks would be complete without a thank you to the two people whose own vision has made today possible.  Jose and Joanna.  It is your continued (and continuing!) hard work that has made all this come about.  On behalf of everyone here today, and particularly on behalf of all the class, I say a huge thank you.

Finally, I close with a rallying call to my fellow class mates.  We live in challenging times.  As we go forward from today, we will face many challenges and have opportunities that are out there.  By overcoming those challenges, and maximising those opportunities, the capacity that we have to make life changing differences with the people and in the places in which we work is almost limitless.

 

To continue to push forward, we have one vital resource.  

 

Each other.  

 

By supporting each other, we will support each other to new heights.  We can’t do this alone, but together we are stronger.  This is why the alumni network is key, and why I know it will go from strength to strength.  I look forward to sharing what will be an exciting and rewarding journey with you, andcelebrating our successes.

 

Thank you. 

 

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.

Notes from a hostile environment


I write this reflecting on a range of recent events, some personal, others more general to me.  I first came across the term hostile environment in relation to immigration policy.  An informative publication from Liberty outlines the sites where this hostile environment is in operation, ranging from education to employment to housing.  Of this, the guide says:

De facto hostile environment policies, designed to limit migrants’ rights and deter them from accessing services, have operated for decades

As I’m reading this I nod.  I nod because I think that increasingly the ‘hostile environment’ applies to disabled people.  It applies to disabled people who are denied education at an increasingly earlier stages of their lives.  It applies to the awful Bedroom Tax, which denies disabled people the space they need to store their essential possessions and forces them into unsuitable property.

The disability employment gap continues to yawn away, obscured by technical arguments about statistics.  Whatever the measure used, the fact is that people with an impairment do not fare as well as those without one in the workplace, and this has been the case for years.  As if to prove the point, Inclusion London have today released some research showing that disabled people are being pushed away from the workplace by the operation of the benefit system.

Which brings us to benefits, including PIP and Universal Credit.  Regular readers of this blog will know my thoughts well on the former.  On the latter, figures have emerged suggesting that people will lose up to £200 a month.

Yet still the hostile environment is allowed to continue.  The front pages dominated by Brexit and the antics of someone whose name I don’t even know in Strictly Come Dancing.  Every morning it seems, I read the newspaper headlines and shake my head.

Closer to home, I had to go to a hospital appointment with my wife last week. Without me she was greeted with comments such as ‘Where is your carer?’ With me, she was taken seriously and given time to have her questions answered by someone who actually made eye contact and shook her hand.

There are people who are out there who are making a difference, who are highlighting the issues, whose work I applaud and from which I draw strength. Much more of this is needed.  Much, much more.  Then there is also the notoriously fractious disability community, for whom consensus on the key issues seems to be illusive, to the detriment of so many.

The charges are too easy to sweep away.  A particularly pernicious feature of the hostile environment is its stealthy and subtle nature, its creeping norms steadily chipping away.  It also has a teflon like quality, armoured with an ability to swiftly and confidently dispel any critiques, stubborn enough to resist even the sternest of critiques.

So where are the solutions?  Unusually dear reader, I am not so sure at this point in time.  Something has to change though, and some new responses are needed which are effective in highlighting the numerous manifestations of this hostile environment.

Let us hope some counter measures can be swiftly deployed, and that the responses are forthcoming.  I’m tired of shaking my head.

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