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0 The group for disabled people working in sport and physical activity with our allies: Reflections so far

The purpose of this blog is to outline some personal reflections on the first few months of setting up the first ever group for disabled people working in sport and physical activity in the UK with our allies. That statement still feels like an unbelievable one, but it’s also true.

As I write this in sunny I scroll back through my WhatsApp messages which take me back to November 2021. The 23 of November to be precise. Talking to my dear friend Lucy, I sent her a message:

"Seriously debating just setting up a group to scope things out and seeing what happens..."

So the seed for the group was planted. Fast forward 9 months and we’ve come quite a way, with a bright future ahead for the group and many exciting possibilities. The group is very much a product of its collective membership and fuelled by the energy, wisdom and commitment of those who have come along with us along the way.

Every meeting I am humbled that we have been able to form a group which has such passion, commitment, and determination to make a difference in disability sport. It is one of the best things I have ever done in all my time working in the disability space and I have learned so much from the people who have come into the group.

Seeing what happened: Lessons learned

Such has been the richness of the journey I have been lucky to travel on so far, its difficult to pick out highlights. There have been a few things though, which I will expand on here:

The talent is out there

Frankly, it always confuses me when people say that they struggle to get engagement with and amongst disabled people. It is abundantly obvious from those who attend the meeting that there is a vast array of diverse talent amongst people who work in disability sport and physical activity. Step into any group meeting and you’ll see people at the top of their game. CEOs, academics, consultants, people working for organisations up and down the country, I have had the privilege of seeing them all in meetings over the last few months. If you think the talent isn't out there, you aren’t looking in the right way.

Co-production is vital, taking time and courage

When we set out to form the group, we did so with a commitment to co production so that the group helped to shape its own progress (see also below). This is so powerful. Having a shape and agenda which is constructed by the group for the group has been at the heart of its success. It has, in my view, also helped us to create a spirit and a safe space where people feel they can bring themselves.

The use of a co-produced approach can also be a time consuming one though, as foundations have to be set in place gradually. This can sometimes create a bit of tension – and its something I have felt a lot – where it feels like there is a need for a plan and a roadmap. It also requires patience, which is something I have had to learn a lot about (and still am!)

It also means being brave. It is daunting to go into a meeting not knowing where it will go. Therein lies the reward too though. Often, the quality of the discussion has happened because there was no agenda – and the time we have invested has helped to grow the foundations of the group and the bonds within it.

Removing barriers and labels is essential

One of the most important decisions Lucy and I made is to deliberately not have any set criteria for membership. You didn’t need to have an impairment or be in a particular position. If you want to come then you can come. We have also been responsive where we can, such as putting on a daytime meeting where originally there were only evening meetings.

There has also not been any cost for membership. The small direct financial cost of the group (a zoom membership, purchasing a web domain and mailing list software) have been covered at personal expense because we didn’t want a membership fee to exclude people.

We have used accessible means of communication, captions via zoom and asked people about adjustments they may need to access the group. Another lesson is here – that by maintaining simplicity and agility, being accessible isn’t expensive – its just about trying to have an inclusive mindset, asking questions and being open to finding solutions. There is always more we can do here, and I will keep challenging myself to do better.

The lack of barriers and labels in the group though has been important to the work of the group so far in my view – linking back to the creation of a safe space. Inclusivity is a key component of that safety.

Allyship is vital

Progress can’t be made alone. The commitment of our allies has been a key driving force of the group. Allyship has provided emotional intelligence, sustenance, energy and support throughout – and that is just for me. The allyship I have seen from people in the group who have been so supportive throughout is integral to the success of the group. In my personal view, finding and forging meaningful connections with allies is essential to making continued progress for disabled people. We need people to be aware, to amplify and support our voices and to challenge exclusion alongside us.

Disagreement is healthy and mistakes are positive

The disability space is a rich and broad church. There are many different views. In my personal view, without getting too soapboxy, we seem to have forgotten how to disagree with each other and yet to still get along. The group has consistently seen debate around many issues – and with each debate there has been important opportunity for learning, reflection and growth. Disagreement is positively embraced and worked through.

I have made lots of mistakes along the way too, and there are many things that I know I could have done better – and I’m sure many things that I’m not aware of too. One of the most positive learnings in the course of my own personal experience with the group is that I am far less scared of making mistakes and welcome the learning they bring. If I’m not making mistakes, I’m not challenging myself enough to grow and develop.

Space isn’t owned, but held

Along the way I’ve been really keen to emphasise that the group isn’t owned by anyone but the group. I count myself incredibly lucky to have the support of many people too numerous to mention to get to this point.

If I have one job with this group, it is just to keep hold of whatever space it occupies for a period of time before I invite others into it. In my personal view, nobody ‘owns’ any space – we just happen to work in it and I believe I have the responsibility to do my bit to make that better. Other people will then hopefully come after me and build on it as they hold that space.

We have come a long way – but there is a long way to go

There has been lots achieved in a short space of time, but it is also apparent in my view that a lot of progress is still to be made. As we know, the talent is out there, so we have to be relentless in our quest to make disability sport and physical activity a more inclusive place for everyone who works in it.

Where to next?

Plans continue to keep developing the group. There is also a lot of work to be done. To take stock, a survey of group members is being developed so that we can learn what we need to do better and build on our successes to help the group go from strength to strength.

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0 Disabled or not Disabled: That is the Question

I have the pleasure of hosting this blog from Dr Emma Richardson. Emma is a key driving force behind the group for Disabled People Working in Sport and Physical Activity (and our allies!). Emma has asked me to share her experiences here...

I’ve worked within disability inclusion in physical activity for over a decade, and probably for 8 of those 10 years have experienced chronic pain. I’ve been in conflict with myself (mainly because of the literature and amazing disabled people that have shaped my experiences and knowledge) about whether I am actually disabled.

To look at me on a ‘good’ day, me being disabled probably wouldn’t be a thought in a person’s head. I walk ‘normally’, I can use all my limbs, I’m active, I play sports (very averagely), I am the quintessential ‘able-bodied’ person; except when I’m not. Even on a good day people may notice myoclonic jerks when I sit or lie down, my strategic gripping of mugs with my thumb, second and third fingers as the fourth and fifth are lazy sods, very loud and repeated cracking of the back, random 5 minute yoga sessions when my muscles spasm, and if anyone would randomly ask me if I was in pain, my answer would always be ‘yes’. On a bad day my walking stick or crutches, asymmetrical walk and clear effort to stand up, sit down or move in general draws stares of pity, nosey questions of morbid curiosity, and I can almost read their thoughts ‘oh, what a shame. She’s very young.’ But even at my worst, when I’m hospitalised and catheterised because I can’t move my legs or pee, I would think ‘I’m having a flare up’ rather than ‘I am disabled’. But why?

As a researcher that strives to be of service to marginalised communities, I have in the past seen disability via a social or social relational model lens where disability is caused by social structures and discriminatory attitudes rather than an embodied experience. In that way, no amount of ramps are going to fix my discs, no positioning of braille is going to reverse my nerve damage, sign language interpreters will not stop me from randomly kicking or hitting someone (sometimes not so random), and no amount of affirmative interactions is going to lessen my pain. So, in my head – I wasn’t disabled. From a social relational level lens, yes perhaps but I immediately dismissed myself as being part of that disabling interaction; people were just ignorant so it’s them not me. I absolutely recognise the hypocrisy.

For years I have debated writing about my experience of becoming and ‘unbecoming’ but always being physically impaired; it’s such a strange and difficult transition to ‘become’ one of the group you are studying. I always want to be transparent and honest with people I work with, but when it came to ‘coming out’ as having a long-term permanent injury I had (and have) no idea what to do or say. Though I strive to be honest I am a private person so the thought of exposing my thoughts and feelings on paper for all to see terrified me (and still does). Was this really a useful reflection that others could benefit from, or just an egotrip? The discomfort and isolation I felt meant that I constantly stopped myself from reflecting upon my experiences and instead I would move onto another research project learning about other ‘properly’ disabled people’s much more important experiences.

Following involvement in this group and a spontaneous conversation with other disability researchers, however, I think the time and place is right to start a conversation of the ‘spectrum’ and temporality of disability that I hope will help address the us v them, disabled v nondisabled mentality that I do not think exists in the group, but our society in general.

What’s in a Name?

Sitting under the umbrella of one of Coimbra’s fine cafes, 3 fellow academics I have known for years and myself are taking a break from a disability conference to re-caffeinate and chat. On the way over, one of my friends was limping and I noticed her throwing her left foot out and when she doesn’t, her foot is dropping.

“You ok, pal?” I ask as we settle at our take and see her twist her back.

“Oh yeah, fine. I just have a slipped disc”

“Dude!” I state knowing how painful that is, “there is no such thing as ‘just’ a slipped disc! You should have said! We wouldn’t have dragged you across town just for a coffee!”

“Oh it’s fine. I mean, look at the research we have been listening to. It’s nothing.”

“But we could have rented those wee bikes and that would have taken the pressure off and not given you the hard impact.” I urged her to reconsider our way back.

“Um, actually we can’t cycle because my knee doesn’t allow me to cycle” chimed in pal number two.

I turn and stare at him aghast. “Wait what?!” I exclaimed, “You’re injured too. Folks, why are we just finding this out now! We’ve known each other for years! How long has your knee been bad?”

“Well, years really. Can’t bend it, I can walk for 30 minutes ok but after that it swells up like a melon. I’m supposed to get surgery but they don’t really know how that will help.”

I turn to the 4^th friend. “Any long-term injury you would like to share?”

He chuckles, “No, no.”

I feign a sigh of relief.

“Oh well actually, I take fits when I over-heat”

I stare at him like a disapproving mother. So day 3 into a conference in 36 degree heat NOW you let us know you have fits in the heat?! Man alive what a group we are.”

This rather humorous interaction is as close to the conversation as I remember and though of course not word for word, the surprise and shock learning that 3 of my friends and colleagues also experience long term, probably permanent, chronic pain and injury is very, very real.

****

The above interaction led to a much more serious and in-depth conversation about disability. What is disability? Who is disabled? Is it permanent? Is it a spectrum? How can one negotiate different identities and places on the spectrum? What might those different positions look like to someone not disabled? You’re faking? You’re putting it on? And then we asked the question, why hadn’t we been open about our experiences before? We don’t have answers to these questions, but one reason we spoke about for the last one that though we all experienced pain, limitations, at times hospitalisation, we did not have a name for our conditions.

I won’t go too far into my list of back issues but the long and short of it is I don’t have a healthy disc in my spine and a year without stress fractures is a shock! When asked why I walk funny (either because my foot is dropping or I’m using a walking aid) etc., I just say I have a bad back. I then get to hear all about how that person has a bad back, how it will be so much worse when I get to their age and I’m too young to understand what a real bad back is, blah, blah, blah – feels really great and totally validating (not!). But, if I said ‘oh I have a spinal cord injury’, a very difficult interaction would occur – there’s a name, an understanding, a diagnosis and an identity formation that goes with that terms; not necessarily positive depending on how informed people are, but nonetheless a name. Similarly, my friend with the knee injury, rather than acknowledgement or validation of his pain, gets to hear about other people’s horror story of knee injuries and, again, how awful it will be when he gets older. If he said perhaps that he had osteoarthritis, a different interaction may occur; there is a name and understanding when one has a diagnosis. It seemed, in our reflections at least, that without a name or diagnosis we felt unworthy of counting ourselves as disabled. Further, without a name to share with others, we may be perceived as parasitic researchers acting disabled in order to advance our own career, weaselling our way into communities we study to take data and publish papers that help no one but ourselves.

I thought I was really onto something. If I had these concerns, and my much more intelligent friends had these concerns, then surely there must be others and this was worth validating. With new courage that this was a good idea I approached a disabled academic I deeply admire (and am slightly scared of) about a future project around this complex, intersecting, and multi-level conflict my friends and I discussed. His response was profound, in-depth, eloquent and considered; ‘Well, why? That’s stupid.” Seeing my deflation, he explained (and this has been explained to me before by people in this group), nondisabled allies are far too cautious and think their presence is far more influential than it is, there is no need to apologise for not being disabled, and often nondisabled academics working with disability think about disability WAY TOO MUCH.

Hi. My name is Emma, and I am disabled.

So I guess my perception about being disabled or nondisabled has changed. If I believe that disability is cased by both structure and interactions with people in society, then yes I am absolutely disabled every time someone dismisses, patronises or belittles my pain. The next person that asks if I have tried yoga or supplements to ‘get over’ my pain or make myself better is getting a slap (metaphorically). For the record, yes I do yoga, yes I take supplements, anything you can possibly do to manage a condition I do. It doesn’t mean I will be ‘cured’ or be pain free, and that is not my objective.

My objective is to be ‘able-bodied’, and by that I mean my body is ‘able enough’ to hang out with my friends, my body is ‘able enough’ to play the sports I love, ‘able enough’ to play with my nieces and nephews, ‘able enough’ to help my dad in the garden, ‘able enough’ to do the work I believe is my calling, ‘able enough’ to go on spontaneous pub trips and adventures, in essence, ‘able enough’ to be me. To do that, I don’t need a name or diagnosis.

I suppose in a way this is bit like my announcement or ‘coming out’ as disabled. I am disabled as interactions with people have caused me to feel discriminated, angry, hurt, upset, anxious etc., and while I acknowledge that no social structure will take away my pain – more accessible ones would certainly help!

So I am disabled, but also able-bodied enough (at least in my good days) to be happy, fulfilled, driven, optimistic, active and of service to those I love which is all I want from my life.

0 A trip home and reflections on the dynamics of lived experience

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.

0 Depression, anxiety and finding my embers

Trigger warning: The following may not be easy to read but is shared in the hope that it helps someone.

Dear Reader,

Whats the first thing that comes to mind when I mention the words “depression and anxiety” to you?

Picture in your mind someone who has a very happy marriage, wonderful family, a good job and is relatively successful. Doesn’t sound like someone who is a good candidate to experience depression and anxiety does it?

No? Well you would be wrong.

I’ve had depression for years, and by and large, have managed it well, often achieving things and getting on in spite of it. Throw in a global pandemic and a few other things that are going on personally and you have a bit of a perfect storm.

I think I’ve been quite resilient. Fran and I have been self isolating now for over a year and have only left the house on a handful of occasions. Literally. Our most frequently visited locations have been hospitals and GP’s surgeries. Faced with a choice between risking getting covid, especially during a peak, and staying home, we chose the latter. It didn’t feel like there was much choice.

During that time we’ve also both worked on a fairly constant basis, and this has helped us, providing structure and routine, together with a sense of purpose and that we were making a difference.

That time though and a few things have come together to mean that I’ve needed to take a bit of time out to regroup. I’m fortunate to have received support to do so, which means a lot.

What does depression and anxiety feel like?

I should caveat this section, where I will describe what depression and anxiety feels like by saying that it might feel different for everyone, so I can only talk about my own experiences. I can’t, don’t and wouldn’t want to speak for everyone, especially about something as personal as this.

In order to set this into context, I need to introduce you to my life a bit more. You see I came to this life with an impairment and was lucky to get here at all, being born many weeks prematurely. Not much was expected of me, and its fair to say that I have enjoyed demonstrating what I can do.

That’s not to say I’m some kind of Nobel laureate or something (even the spell checker had to help me out with that one!) but I’ve always felt a particular kind of relish and energy. Its sort of like being the underdog in a sports match. Nobody expects to win so you have the drive, and determination to do so. It spurs you on, and its really satisfying to experience each minute striving.

However. There is always a however to throw a spanner in the works isn’t there! It’s a tricky balancing act. Trying to constantly strive and defy the odds can be very tiring. This is especially the case when it can sometimes feel like you are playing on an uneven pitch, constantly kicking the ball against an uphill pitch, with the wind in your face and mud making it harder to progress.

Here’s where your team mates come in. I’m really lucky to have the best team mates. They pass to me, I pass to them and we certainly work together and win more than we lose.

Sometimes I can feel like I have to play the game on my own, as well as doing all the officiating, and getting in my own way by being my opposition too. Oh and by the way you have to put up the goalposts too, and drive the team coach home.

Being your own opposition. There’s the rub, and where depression and anxiety combine with an inner imposter to make a formidable combination. For me, anxiety is that constant feeling when it takes hold. That sinking feeling that dominates everything and is really intrusive. It literally anchors your feel to the floor and can even make it hard to breathe.

At its worst, it can make it hard to even put your football boots and kit on, let alone even make it out on to the pitch and remember your tactical instructions to beat the opposition. The biggest opposition comes from inside your head. My inner imposter is like the most angry half time team talk ever – every move berated, not good enough, I might as well not have bothered. Worst, because you are playing like this you are actually a burdento your team. They are better off without you.

Imagine that shouted into your face. That’s the combination of anxiety, depression and inner imposter working.

Where has the successful happy person gone? Gone. Far away. And yet, the embers of this still burn. You know they are within you, and that somehow you have to reach deep within you to get your spark and fire burning again.

Getting the fire going again

Right now, getting the fire going is where I’m at. I’m reminding myself that I am useful and capable again. Even that I am enough, and that I can (and do) make a difference. I’ve written about my counter attack too.

The signs are positive. Just as the signs of that anxiety and depression are recognisable, so too are the positive ones.

Last night I was able to sleep. My first decent night’s sleep in a long time. The first uninterrupted one in months. Sleep for me, or the lack of it, is always the first sign that all might not be well.

I’ve also been able to read. For pleasure! Miraculous. So too meditation via headspace. The freedom to escape, to put things into perspective. To rationalise.

This next thing might make you laugh. I have a PhD and yet sometimes I can’t even remember whether I’ve taken my anti depressants. I can be thinking about quite complex things on the one hand and not even remember whether I’ve taken a tablet on the other. How to address that? Well I have bought a pill box! A £5 device which eliminates the “yeah but have you taken it today? Really?!” questions.

I’ve also been remembering to see life in the round. In this, I’ve been helped by the arrival of a family wedding. One of the quirks of the pandemic is that my sister (congratulations again sis!) has a fiancé that I have not even met. Yes really.

Once more, I am hopeful. I have started to laugh again.

Lots of people might be struggling at the moment. If you are reading this, know that that’s ok, and you can find your embers too. Try to be kind to yourself. To talk. To take even the smallest step…even if that is just a few deep breaths.

Take good care of yourselves, and those around you too.

If you have got this far, I hope this has been some help, and thanks for reading.

0 Lived experience of disability and coronavirus: Negotiating structural injustice

This blog will focus on some of my recent personal experiences and reflections of living through Coronavirus. It uses the lens of structural injustice as recently outlined by Powers and Faden (2019) as a means to manage resistance in a sustainable way.

Lived experience

I think it is fair to say that I am always aware of the responsibility I have in various ways. I feel compelled to make a difference, and to use the modest platform I have in order to do so. Set against a backdrop of Coronavirus, the numerous impacts of which have been well documented for disabled people, this responsibility has never felt greater.

So much so, that at times, it has felt overwhelming. I have had to find a way to be able to try and make a difference in a sustainable way, whilst recognising that, unfortunately there are all too real limits to what I can achieve. This has been a painful process. At times I have only been able to sit and worry about where we are and where we are headed, knowing that the world ahead will only be a more bumpy one to say the least.

Structural Injustice

Coronavirus has highlighted many things, and for me, one of those things has been that not all societies are created equally. It is only through critically analysing the structural forces at play that societal landscape can be best understood. Taken at face value without unpicking the underlying influences, there is a risk that action may actually perpetuate problems as opposed to addressing them.

Critical times need critical thinking. Structural injustice, as explored by Powers and Faden (2019) is an important analytical device in our metaphorical toolbox. I will caveat this by saying that what follows is a very coarse sketch of a complex concept. Nonetheless, even my rudimentary understanding is, I hope, a useful one.

Structural injustice is defined as:

“unfair patterns of advantage and unfair relations of power including subordination, exploitation and social exclusion, as well as human rights violations and depravations in well – being that contribute to and grow out of unjust social structural conditions” (Powers and Faden 2019:1)

With its sweeping impacts, coronavirus creates the perfect climate for structural injustice to thrive – highlighting in particular patterns economic and political disadvantage. In such conditions it also becomes harder for typically marginalised voices to be heard. In other words, I view this as meaning resistance also assumes a greater level of importance.

Resistance and negotiation of structural injustice

In stark terms, the resistance offered may be in statistical terms simply staying alive for disabled people. Thankfully I have observed more developed forms of this amongst the broad church that is the disability community.

At a personal level, finding forms of resistance that are sustainable has been especially important during a long lasting period of time self isolating, which, unfortunately has no end in sight.

Powers and Faden name several forms of resistance but I think simple acts, such as finding solidarity amongst each other are missing. As is a detailed analysis of disability in Powers and Faden’s otherwise excellent text.

For me, there is also a balance to be found between resistance, compliance and discipline. An act of personal resistance would have been to disregard the current climate and live the life I did before the pandemic. That did not feel the right way forward for me though – so I have had to find ways to carve out new forms of personal discipline. This may be a perfect juncture to introduce Foucault, but I will resist the temptation to do so.

At an every day level, maintaining a sense of wellbeing is also critical during the present times. In terms of my lived experience this has meant focusing on ways in which I can make a difference, whilst acknowledging that there will be battles that will have to be left for another day.

It is crucial though that we use a critical lens, such as that offered by structural injustice, in order to take and make decisions in the best, most inclusive way we can. This also means using the power of lived experience to help shape the way forward, and in so doing, make inroads into structural sources of exclusion.

0 Coronavirus, Mental Health and Disability: My experiences

One of the hardest aspects of the pandemic, and of my life in general, is the battles I have with myself. I have had depression and anxiety since my early twenties, and have managed it ever since. During my PhD I was particularly low and went through periods when I didn’t want to be here.

I often look back at that time and think what I would have missed out on. Meeting the love of my life, becoming Dr Chris, and a career I love are but three of those things. My point? Even if things can appear hopeless, as they did for me then, there is always hope.

One of the most challenging features of Coronavirus has been our self isolation. It is true to say that this has been our choice, but it has felt like the only safe option to us. We have watched the impact of the virus on those with impairments, seen the statistics and the particularly deadly nature of it for disabled people. Suddenly, going out to the shops didn’t feel worth the risks.

It is also true to say that this time has led to real positives. We have been well supported, Fran and I have got even closer and it has really put things into perspective. That said, this time has still has had its impact. Early on in the pandemic, I just wasn’t coping very well and I upped my dose of antidepressants and started to have counselling again.

Depression often reminds me of a duck swimming on a lake. Above the surface all can be fine, but beneath it, you have to kick furiously just to stay afloat. Sometimes you have to have a dip to bounce back, and I think this has been the case for me. Somehow, we have dug deep and I have been able to live a relatively functional and productive life.

If you are reading this too, know that it is ok for things to feel difficult, especially at the moment. We are being pushed and tested in ways which we haven’t encountered before, and asked to sustain ourselves in a totally new environment.

We have to support each other through this time. We are each others best resource, and it is through solidarity, human spirit and a compassionate approach to life that we will move through this time. Move through it we will too. We are by our very nature resilient, creative and adaptable people.

As strong as we may be though, we are allowed to waver, to have moments of doubt and darkness. It is through keeping in tune with these experiences that we can, I hope, ask for help.

Let us also remember that good mental health isn’t just about today. Our wellbeing is a lifelong pursuit and nurturing this a lifelong habit. It can be a hard path to visit, but through doing so, life can be richer.

Some tips

So Fran and I have been doing self isolation for a while now. Looking after our mental health has been particularly important during this time. Here are some of the strategies we have used:

–Getting Creative – We have found different ways to express ourselves, particularly through writing and doing crafty things and journaling. Writing I have found a particularly powerful means of expressing my feelings.

-Trying new things – it is possible to still have new experiences during this time. I asked our butcher for a ‘mystery’ item in our order, and we’ll try and put something new in our supermarket shop.

-Get comfortable – We have tried to make our home a sanctuary during this time. Simple things like candles, throws and cushions have helped with this.

-Find space – Making ways to have a bit of time to ourselves has been important. My noise cancelling headphones have been a particular blessing. Use music and film to take yourself to different places.

-Find ways to talk – I have a lot of people who have kept me going during this time. I know I can be avoidant – but through keeping in touch with others I have found vital support and energy.

Laugh – Just find a way to laugh. I can honestly say that I find something to laugh at every day.

Hope – Most important of all – allow yourself to hope. There will be better times ahead. Even if you need others to have this for you for a bit, there is hope.

Experiences of impairment during coronavirus: Exclusion, Inclusion and unheard voices

I have now become an expert in marking time. And forgetting about time. And cherishing time. And worrying about time.

I have never felt closer to the world, nor more disconnected from it.

Never more certain of my convictions, yet never wavered as much.

Always completely grateful, yet never more frustrated.

Experienced such a feeling of powerlessness, yet never felt more able to be powerful.

Seldom more worried about the state of the world, yet optimistic about the future.

All of this is just in one day. Such is the rollercoaster of our present times. Yet I am still here. As I write this, the long summer days have retreated, and the raindrops hang on the garden furniture. There is a sense of preparation, of anticipation. Having done what we can to bed ourselves in and to hope our defences are strong enough to withstand the onslaught of a tricky winter ahead.

Allow me to sketch out some of what I see before me organised into three main themes.

Patterns of exclusion: from the subtle to the explicit

In my experience, its quite typical for a lot of things to be a battle. Planning how to fight these battles, which ones to prioritise and which ones to come back to can be quite a complex and fluid process in and of itself.

It may seem obvious, but the exclusion I see has increased during recent weeks and months. There are some days that there are so many fronts on which to fight the battle, it isn’t possible to even determine a starting point. These are the days when I just have to dig deep and resist the temptation to pull the duvet covers over my head.

A good example of subtle exclusion comes in the form of straws. How can the simple straw be a form of exclusion? Allow me to tell you.

Fran needs a straw to take a drink. Any drink at all. It is an essential tool. Not having access to a straw has literally led to us going home on previous occasions. The intake of fluids is an essential to many experiences, as well as being of practical importance.

But there are alternatives I hear you say. Of course there are. We have tried a few. Believe it or not, we care about the planet too. We’ve tried the reusable ones. The metal ones are risky. Not to put too finer point on it, but having a metal object in ones mouth doesn’t mix well with a strong startle reflex.

Don’t even get me started on the cleaning and hygiene.

At a more fundamental level, this is about choice, control and the ability to access public spaces in a way that works for us. Trust me too, that by the time you’ve got ready to go out, found an accessible venue, prayed the parking is ok and the lift works, the lack of a straw could literally be the difference between persisting in your day/night out and just going home because it is all too much hard work.

Allow people to access spaces in a way that works for them. Don’t add another layer of exclusion in. Viewed in this way, the humble drinking straw is either a potential passport to inclusion or an exclusionary device. True story.

On other levels, there is the renewal of coronavirus legislation which carries with it a whole host of issues. I imagine there will be social care battles to be had in the not too distant future.

Then there is the outside world that I continue to largely self-exclude from. The last time I ventured anywhere was to give my car back, which was one of the last hunkering down acts to complete. This is my choice. I’ve made it with Fran as it continues to be difficult to find reliable and trustworthy information about levels of the virus and, particularly having come this far, the rewards of venturing into the outside world don’t stack up against the potential risks.

Scope for inclusion

It is though important to say that we have a number of reasons to be optimistic. Not least that we are still here and still healthy. Through our actions, we’ve helped not only to keep ourselves safe, but others too.

The virus has made us thankful for the day to day stuff we might have otherwise taken for granted. Deliveries from the supermarket and butchers have become notable events, and we’re conscious of the ability to have food in the cupboard.

Solidarity too has been great, not least with Fran and I. We have had a grand total of a week apart since the beginning of the year and in that time we’ve only had one argument, which is good going I think. We also find a way to laugh every day too, which is so precious. The sense of solidarity between disabled people too has been notable.

These times have made us critically reflect on our values and the things we stand for.

Who are you not seeing?

One thing which has stood out to me is how quiet the disability community has been. This vibrant space has been quite subdued. When you factor the above in, it is perhaps not surprising. We have been trying to get on and keep an eye out for each other.

What this means is that greater focus is needed on unheard voices, the reasons for this, and creative mechanisms to allow those to have a view a way in which to express it.

By asking ourselves who we are not seeing, we’ll also resist patterns of exclusion and create scope for inclusion. This is a battle that we cannot put to one side.

0 Tellin’ stories:Experiences of impairment during Coronavirus

One of the things that has struck me about the pandemic is the narratives that we see. I know my own account, and have shared that. I’m also lucky in that I have a (small) platform through which I can talk about my own personal experiences.

What of others though? There are many stories to be told.

I’m often struck by the power of stories, and the capacity they have to powerfully demonstrate what we can learn through capturing them. Each story has its own power and value. Through harnessing that power, there is so much to be gained. To me, this feels especially true at a time when it feels that there is a risk that the impacts of coronavirus on and for disabled people may be overlooked.

What can I do though? My resources are finite. What I can do is use the platform I have to the voices of others. It is my hope that through doing so, the impacts of Coronavirus for those who have an impairment can be illustrated.

It feels in some ways like life is one big count at the moment. Figures, projections, graphs. All have a place. What of the stories behind the numbers though?

This is where I hope the present blog will be useful.

I also appreciate that stories can be hard to tell and take a variety of forms. So I do this with no expectation other than to see where it leads.

In doing this, I am inspired by my friends at WOWvoices, who continue to do important work to share stories of their own.

How to tell your story

The most important thing is that you feel comfortable to do so. Please keep yourself safe

Use the following form to tell your story in your own words, ideally in a paragraph or two

You can tell your story anonymously

These stories will be shared via a blog on this website

If you have any questions, please contact me using the form

0 Disabled people are struggling. Will this change and what are we going to do about it?

Unusually for me, as I write this blog, I feel a kind of anger that I have not felt in a long time. Why? Because disabled people are struggling, and it feels like this is just accepted as part of our ‘new normal.’

When I say disabled people are struggling, this is me being euphemistic in some cases. Why? Because disabled people are dying. They are dying because of Coronavirus. Office for National Statistics data shows that disabled people are at increased risk of death due to Coronavirus. It is a fact that is difficult to acknowledge, but acknowledge it we must.

Evidence suggest that in the present climate, disabled people have been, as Inclusion London put it, Abandoned, Forgotten and Ignored. Other evidence suggests that the so called ‘disability employment gap’ is about to worsen. As a disabled person who works, I am, apparently, a bit of a statistical rarity. Yet now we are told that disabled people who work are more likely to be at risk of redundancy.

We need to have some difficult conversations if we are to address this position. I say if deliberately as it might be that we do not want to as there is no longer any collective will to do so. I certainly see no general urgency to do so. Quietly, disabled people have endured their struggles.

Where are the voices in the positions of influence to change this? I know a handful of diligent individuals, many of whom have worked for several years to make things better for disabled people. Time and again though, the same people are called upon to represent us, and the weight of this is telling.

Frankly, I don’t see the next generation of disabled people emerging for the baton to be passed on to. Where are the next leaders? What is being done to support them?

In so many ways we are going backwards, and coronavirus is rapidly accelerating this regressive direction of travel.

The question is, what are we going to do about it? How bad does the situation need to get before action is taken?

Or is struggling just a part of the new normal?

If we are to stop this from being the case, swift and profound changes are needed in practical terms. We also need to restore the cultural foundations of equity that have been so violently attacked by coronavirus.

What are you going to do to help this happen? Don’t just walk on by.

0 Preparing to break the bubble

Hello dear reader,

Picture the scene. You have been in self imposed exile for a long time. Not seen family in months, basically hiding away in the name of survival. If this sounds like I’m institutionalised, I probably am.

For someone whose PhD involved working in and around the criminal justice system, the irony isn’t lost on me.

Now the time for your very own release date has come. All being well anyway.

‘Have you got 5 minutes before your next meeting?‘ Fran says.

‘I have 4, why?’ Ever the emotionally intelligent husband.

It transpires that they are allowing me to accompany Fran to hospital for a (thankfully) minor procedure that she has been waiting for since before Coronavirus.

So now we have two weeks in self isolation which we have to plan for. Thankfully we are given a weeks notice to get our house in order for this. Literally. I still need to read up on the regulations. I knew that PhD would come in handy. So many regulations to read. Institutionalisation to understand. The latter is a work in progress.

Part of the purpose of writing this blog is to process what it might mean to break our bubble. I take comfort in that a) many others are doing so and b) this need only be a temporary excursion.

The odds of encountering people at the hospital are remote, and everyone going there will be tested. We too have the date for our swab tests before we can go in. A supermarket car park. All surreal, yet oh so very real. Not quite the joyous occasion I pictured leaving our bubble for.

The only parallel I can give to you dear reader is that it feels a bit like handing your PhD in for the final time. In your mind, you picture this big ticker tape parade, fireworks going off as the suitably anthemic music plays in the background to celebrate this triumph.

In reality, you deposit the carefully nurtured fruits of your labour in an office, get an acknowledgement slip, and on you go. Life goes on.

Life goes on. It must go on. It has gone on, and it will do.

We’re lucky too, to get this chance. I hope it brings to an end of years of Fran having to rely on morphine doses that would knock a small horse out.

As ever, she takes this news in her stride, with the kind of measured dignity and a long look at me, as if to ask “It will be ok? Won’t it?” We could all doing a bit more like Fran.

We don’t know that it will be ok, but we choose to believe that it will. The alternative is too difficult to think about.

I will go and give Fran a big hug after this, I think.

Battening down the hatches

Being completely honest, dear reader, it is a difficult time to have an impairment. The very fact I am writing this sentence is a cause for sadness, as I’ve strived to live life by any other measure than being defined by physical limitations.

Trouble is Coronavirus doesn’t care about that.

German sociologist Ulrich Beck (more of that PhD stuff again, sorry!) once famously said that ‘poverty is hierarchic, while smog is democratic.’ How right he was.

At the moment, sunsets literally shine through the smog that seems to engulf everything, their rays beaming, offering a kind of symbolic hope as they do. A daily reminder that all is not lost.

All is not lost. Speaking for myself, I still feel like I have much to be thankful for. Celebrating the sunset at the end of each day reminds me of that.

As we approach autumn, our preparations for a tricky few weeks ahead step up. We begin to prepare for the worst, whilst hoping for the best.

My strongest moments come from the solidarity of others.

Here’s to solidarity. I owe my wife a big hug.

Take care, dear reader.

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