A trip home and reflections on the dynamics of lived experience

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Dear Reader it has been a while!  I’m going to write about two interlinked things, a trip home and some reflections on the dynamics of lived experience.  I’ll elaborate on what I mean by that as we make some progress.

A trip home

Firstly, I should clarify that by home I mean ‘up North’ which for me means Cheshire, where I was born and grew up.  I’m in the lucky position of having quite a few ‘homes’ – Cheshire and Cambridgeshire amongst them.  There are others too though, such as Hillsborough (though the less said about the crestfallen Owls at present, the better) and Headingley.

There were lots of surreal aspects about the journey up North.  The first of these was that it was happening at all.  The first time in a year, an interval unheard of!  We’re a close family so despite the 165 miles of geography between us we see each other often, which is great.  Home holds so many memories, especially with mum and dad still living at the house where I grew up.  

Each visit brings the memories flooding back, especially in the summer with nostalgic recollections of keenly contested games of cricket and football, house parties with friends and much more besides.

Visiting felt a bit like Christmas Eve.  We packed for what felt like a month and set off with nervous excitement.  It was the furthest I had driven by some distance and we managed to double the mileage of Fran’s car in the process of the round trip.  We’re now pushing for 800 miles in the 18 months since it was purchased.

Traffic jams on the M6 (where else?!) only served to heighten the sense of anticipation and before I knew it we pulled up on the drive some 4 hours after we had set off. Not bad for a pre bank holiday Friday evening I suppose.

Being able to see my parents in the flesh was an amazing privilege.  

That night I slept uninterrupted for hours.  16 I think. My body felt a peace it had lacked and longed for in a long time.

Familiar places and sights – the flowers in the garden that I had been visualising, I finally got to see. I walked around slowly and deliberately taking in each one.

I got to see my wider family too…my sister and her new fiancé who have met and become engaged since we were home, a reminder of just how much time had passed.

There were challenging aspects too. It felt intense.  At times I was almost overstimulated.  I just needed to sit quietly and drink it all in.  I apologised for my quietness, like I was reaching for my sociable self but couldn’t quite find it initially.  Flashes of it re-emerged, alongside a realisation that it might take longer than I imagined to readjust.  Readjust we will though.  It will take time, but I hope that is time we now have.

Reflections on the dynamics of lived experience

To define my terms again, I mean lived experience of my own impairment.  My reflections are that this is now a double edged sword and needs to be managed with some care.  It reminds me of a good real ale.  It can reach parts other things just simply cannot but needs to be enjoyed in the right circumstances and not to excess.

If I’m honest with myself and with you dear reader, I think there are times when my lived experience can be a bit too much.  At times during the pandemic its weight has been particularly heavy as I’ve been aware of the disproportionately negative impact that Covid has, and is having on disabled people in general.

Skilfully employed, lived experience and its use, to use a different analogy, is a bit like being a tour guide.  You have the knowledge to point out different facets of a place, to offer an experience and perspective only a true local would know.  There is just no substitute for that experience in some instances.

However.  Always a however.  There are lots of tour guides, each with their own views on what the best way to navigate through a place is.  No journey will ever be quite the same, even if there are similarities.  Whilst there may be some common features that are identifiable, each tour guide will be careful to point out the differences in the particular nuances of the routes taken.  It is particularly important to be attentive as detail matters.

Sometimes, from personal experience, being that tour guide brings particular kind of pressures too. There is a pressure to point out the most important features, those aspects that other journeys can’t highlight. To make an impact.  A really important opportunity but a real responsibility too.

Lived experience isn’t something I can switch off either.  This is my life.  I will always have my impairments and how they impact on me. I can’t simply leave it behind when I walk out of the door. Personally, too I can feel a sense of obligation, to feel like I have to show that I can all the time and to succeed despite the obstacles I experience.  Whilst I am fiercely independent, there are days when this can be a drain too.  I’m just me after all.

This pressure and the lack of an off switch means that for me, I have to manage it carefully, perhaps even in future to exercise greater care about what I do talk about (and do not). Maybe the trick is in just being more selective about when, how and where to use it, and when not too.

If you are reading this, you can help those around you too.  Use that lived experience with care to maximise the difference it can make. 

Times ahead are perhaps a little uncertain.  One thing is for sure though, I’m glad I made that trip home, and hope it’s not another year until I make the next one.    

About the Author

Dr Chris Whitaker is a disability blogger who writes on impairment related issues.