PIP Stories: Survivors guilt and unheard voices

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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.



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About the Author

Chris Whitaker was born and grew up in Cheshire, arriving in the world with cerebral palsy after a complex childbirth. Apparently, he was lucky to be here at all and has tried to make the most of life ever since! Chris has worked in the third sector for a few years now and is also a charity trustee. Making a positive difference every day is what drives him and he gets to see the impact the third sector makes. Chris has also been able to use his own lived experience as a disabled person to make an input into his working life.

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