Christheowl, Author at Personally Speaking Out

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.

The group for Disabled People working in Sport and Physical Activity: The story so far

The purpose of this blog is to present and overview of where we have got to with a new group for disabled people working in Sport and Physical Activity with our allies. I’m really excited by the start we have made to this and what we’re starting to develop. I also want to acknowledge that the group is very much the sum of its parts, and this is just my take on it.

Why this group?

For me, the origins of this group are rooted in a desire to see a greater prominence of the voices of disabled people who are working in sport and physical activity and our allies. I had been talking to Lucy who is my chief partner in crime here about the need for and value of the group for a while…and eventually said we should do it ourselves and see what happened.

One of the things that surprises me was that such a group for disabled people working in sport and physical activity didn’t already exist. I think at another level that just shows the work to be done and the value of it. There are lots of immensely talented people out there who identify as having an impairment (and many who do not) and to be able to support each other and be together felt important and valuable.

Part of the desire for this group is situational. The pandemic has been tough for me personally and tested my resilience at times. My instinct is to always try and bring people together because we are stronger together, and to be able to do so in an inclusive way just felt like a good thing to do to try and support others, to hold a safe and inclusive space where we could just ‘be’ together and to work collectively to make a difference.

Now in Lucy’s words:

Lucy Moore

When I was 12 I told my mum I didn’t want to go to support studies at school anymore; I didn’t want to be associated with the SEN learning support assistant (sorry Julie).

When I was 16/17 I chose not to go to the appointment to secure myself extra time in my a-levels; because those extra minutes weren’t worth the shame (I went for cheesy chips instead).

When I was 32 I started a new job and said I didn’t need any adjustments; because I didn’t want my employer to think I couldn’t do my job well.

And now, with my 40s glimmering on the horizon, using the word disabled to describe myself makes me feel like a complete fake. I rarely speak openly about having an impairment (I think due to a combination of internalised ableism and fear) and frankly I don’t want to be considered different or even worse “diverse”".

So honestly the idea of starting a group for disabled people working in sport, as me, not work Lucy, mask off, made me feel a bit sick. Thanks Chris!

But what can I say, it has been amazing.

The people in the group whether disabled professionals or allies working in the sector are all so brilliant. The feeling in the sessions: the passion, talent, intelligence, and drive are like no other collective I have ever encountered. Somehow, we have already amassed a group of professionals, academics, and upcoming talented individuals from the whole span of the sport and physical activity sector. A group that could, and hopefully will, shake the world.

I don’t know where we are going to get to with this or how it will pan out, but it feels big. As I said to Chris and Emma “this is totally a thing”.

I am nervous writing this down in case somehow I curse it and kill the vibe.

If before the sessions I’ve felt worried and imposter-ish, after the sessions I’ve felt emboldened and driven. I’m delighted that this exists and I am excited to see where WE go next .

What have you done so far?

It feels like we have done quite a bit already. As I write, we have held a total of four meetings since the start of the year. We have had a total of 92 spaces taken on those meetings, with further expressions of interest.

From this I think what we have already shown is that there is a need and demand for this group.

The meetings themselves have felt really powerful, with people sharing openly and positive about why we’ve come together and what we could possibly do. I’ve been really encouraged by the breadth of experience we’ve seen in the group, and the mix of established faces in the world of disability sport and new ones too.

In the meetings we’ve talked about the scope of the group, what it is for (and not for) how it should be (and not be).

On a working basis, as these will continue to evolve and develop, we have identified a summary of 5 principles for what the group should be:

Purposeful- Have a clear reason for being, not being tokenistic
Supportive – To help each other and to share knowledge
Solution driven – Finding ways to develop the contribution that disabled people make in sport and physical activity
Organic – The group should naturally evolve and develop, shaped by the people within it

How have you done it?

Here is where I need to say a big thank you to all the people who have helped and encouraged us so far. The momentum and demand has exceeded my own cautious expectations!

I want to say a big thank you to Lucy Moore and Emma Richardson for their great work behind the scenes to help nurture the group through these early stages. I’d pick out a few things we have done:

Been committed to co-production
We have tried to use this approach throughout, mindful that we all have a perspective to offer and should work to arrive at the answers together. This has been a challenge at times as I’ve seen the role of Lucy, Emma, and I to very much hold the space. I like a plan, so to just ‘let it be’ and to go in a direction has been an interesting and developmental process, but helped by the amount of wisdom we’ve been able to muster in the group.
By listening
It seems like an obvious point, but it has been a huge feature of how we’ve moved. An example of this is hearing the demand for a daytime meeting from people who wanted to attend a meeting but couldn’t make the evening sessions we put on. So we put on a daytime meeting an expanded the reach of the group!
Trusting the process
We’re breaking new ground here so we’ve had to trust ourselves, the people we are working with. It’s also taken a bit of courage to put ourselves ‘out there’ and to see what has happened. I have also had to challenge my perfectionist self in that I have had to be comfortable with the idea that I might make mistakes but that being all part of the learning process.
By sharing
Lucy and I have been very clear from the outset that the group is collectively owned. We’ve bought other people like Emma in and are strengthening the group by having a steering group of others who will help to manage things.
By keeping it simple
We’ve had to keep things simple – and I think that’s been part of our learning. Part of this is due to necessity – we have no budget and finite time. Simple is good though, and helps us to be inclusive.

What are you going to do?

We want to keep developing the group and using the momentum we have generated so far. We have future meetings planned and will keep shaping the focus and purposeful nature of the group by:

Sharing our statement of purpose – the group is developing our statement of purpose to help us tell our story about why we exist, who we are and what we will do
Refining the structure of the group – we will develop the group structure so it can work in the a way which is inclusive and allows everyone to help shape it
Retaining our principled pragmatism – we will keep evolving and growing being shaped by the group itself. The group will shape how the group evolves!

Who is it for?

Anyone with an impairment, our allies and with an interest in joining the group. We’ve deliberately not set any qualifying criteria to be inclusive!

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 Working at altitude: Self Isolation, Struggles and finding strength

Setting the Scene

The last few weeks have felt quite hard. I wanted to open up about this so that I could hopefully help someone else too. Even if you only read to this point, know that if you are struggling then you are not alone.

Setting the scene, due to our impairments Fran and I have now been self isolating for some 15 months. Even as I write that figure it feels like a long time. During that time life has changed beyond recognition. The things we used to take for granted – seeing friends and family, even a trip to the supermarket, all gone almost overnight.

I should be clear that this was a choice, but against a backdrop of some sobering coronavirus statistics, it felt like the only prudent choice to make. By sitting it out, we could live to see the other side. Literally.

There have been some great positives from this time too it has to be said. Life has become very simple, and I have learned to appreciate the little things..fresh air, flowers, even the disproportionate excitement of a supermarket delivery without substitutions!

Like many during the pandemic, my mental health has been impacted. More positively, I have found resolve that I never knew I had, and have been able to be proud of what I have been able to accomplish during this time.

Struggling and counter attacking

I have been struggling more over the last couple of weeks, and reached out to a friend to talk about this. I compared it to working at to working at altitude: The air is thinner, the work is harder, and oxygen needed to maintain progress.

We have also had the odd knock too lately, and because we have been working at altitude and a few have come along at once, our capacity to deal with them has been stretched. These things always tend to come along at the same time! Add in a knock or two, tiredness and self isolation and you have the equivalent of a Petri dish where depression can thrive!

I know what depression and anxiety feels like. It positively thrives on tiredness and Fran remarks that it is a contortionist – it can find a way to get into any space that it can fill. Once it has that foothold, it is all too easy for it to grow and it can have a debilitating effect if left unchecked and unmanaged.

My latest counter attack has begun. I have reached out to a couple of friends and I actually had my first social trip out today. Make no mistake..this wasn’t just tea and cake at my local pub. This was the first time I had been out for a cuppa in over a year. I felt apprehensive but it was quiet and I was with a dear and trusted friend.

She knew the words I needed to hear: No pressure..anything goes. The reassurance that provides is so vital. For what its worth, I’d commend this approach to anyone readjusting at the moment: Be patient with yourself and each other, and just take things as they come. Many of us have been living in ways we are not used to, and it may take some time to get back out there, and that is fine.

So what else is part of the counter attack? Well, I have looked at joining a health club and have made arrangements to visit one. Having a bit of an oasis where I can go and have a sauna and spend time in a nice hot swimming pool sounds like a good plan. Fran and I are also due to have our second vaccine on Tuesday. I’m lucky to work with supportive people who have been fantastic too.

I have also been having self-compassionate but firm words with myself about self care. It matters a great deal, especially as the world begins to open up again. Reframing is key too. At a time when depression does the talking a deficit model of thinking takes over and days become about not messing things up. A positive Chris will always approach with the mindset that his experience and ability can be used to make a difference.

This blog, though slightly daunting, is also a good thing I think. I’m always slightly worried that I’m over sharing but my fear is that in doing so, I’m sharing too much and opening myself up to negative judgement. If though it reaches one of you and makes a difference, then it has done its job. I hope it helps someone somehow.

I’m confident that I’ll be climbing again soon.

Some tips

I’ll close with some tips for working at altitude. These aren’t medical or clinical advice but are things that I have found to work from my own lived experience.

Practice good self care. Rest. Eat well. Have outlets to help disperse stress. My x box has been great for this. Reading for pleasure is another option.

Develop a support network. It doesn’t need to be huge, but having friends that you can open up to can make a difference. I’m also a big advocate of counselling too, which can help.

Take things one step at a time, and reward yourself for progress you make. Writing down positive things you have accomplished is a good exercise.

Breathe. Just breathe. Taking even just a few seconds out to take some deep breaths can help improve composure. Listen to your favourite song. Having a short, purposeful ‘time out’ can help you to regroup.

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

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