Disability Archives

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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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 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 Should I stay (in) or should I go (out)?

I sit here feeling conflicted. The cricket is on in the background. I smile as I think about the many happy days and hours I have spent whiling away watching this beautiful game with my Dad, setting the world to rights in the process.

Writing this, the now customary lump in my throat forms as I think of such happy times, and then remember I haven’t seen my parents since Christmas. An unheard of gap, which we have all felt. It has now been 22 weeks of self isolation. 154 days.

Such a strange time. So paradoxical too. I can’t recall a time when I have felt so connected to people in some ways, and yet so disconnected in others. I feel a weight and a responsibility that I have never felt in this way, to step up and to continue to raise awareness of the challenges faced by those with impairments as we experience and adapt to our ‘new normal’.

I want to do more, but I’m not quite sure how to. I know that I try to make a difference, but it never feels enough. As a ‘fixer’, who wants to offer solutions and make a difference, this is something that is very hard to stomach. Where is my cape when I need it the most?

Set against this is the chilling realisation that those of us who have survived thus far have defied the statistical odds. Analysis such as that from The Office for National Statistics tells us that those who declare an impairment have much higher mortality odds than those who do not.

It is little wonder that simple things like taking photographs of sunsets at the end of the day, and giving thanks for making it through each one have taken on new significance. I am here, yet I am also not here.

A factor in the isolation is the climate we see around us. I am not in a position to ‘help out’ by eating out, and find it difficult to ‘play my part’ wearing a face mask. This less than subtle ‘othering’ of those with an impairment serves to compound issues faced around the lack of confidence to go out. Why take a risk when I risk being confronted?

I don’t want to wear a special lanyard either, or carry a card. I stand out enough as it is. I just want to not be the subject of unfair judgement from others.

Frankly, the situation feels messy. At other times I feel a strong desire to just leap in my car and head up North to see my family. After what is now 22 weeks though it feels that this would be a rash move that would compromise the care we have shown so far.

So, in the deliberations about whether I should stay or go, I think the former will continue to be the case for now.

It is in these times that we can continue to be each others strongest assets. I can only speak for myself, and I know that these times are a struggle and will continue to be so. They are a unique challenge that in many ways surpasses that of anything else I have done previously. And I’ve done a couple of things.

Compassion as opposed to condemnation remains key. One of the most important questions you can ask someone during this time, is ‘how are you?’

0 Reflections on three Months in Lockdown: Wave After Wave

As I look out, the sun is shining. Uncharacteristically so for a Bank Holiday. Aside from that though, it could be like any other. Except it isn’t. This one marks the start of the 14th week of lockdown for Fran and I. This is now our ‘new normal’. Going outside feels unthinkable. The little things I used to take for granted, nipping to the shops, putting fuel, in my car seem so far away and irrelevant.

Being completely honest, as I always am on this blog, it is a very bitter sweet time. As I write this I feel guilty, as the reality is in many ways, I am in a privileged position. I am still alive, still healthy. I have my own house, access to outside space, a hard won supermarket delivery slot. All I really have to do is sit it out.

On the other, I find myself looking longingly at a photo of my parents back garden. In a photo, Dad stands proudly over my parents latest project to keep themselves busy, a newly constructed garden pond. Dad is glowing with pride. Despite being over 70 and having a heart condition, he is in better shape than he ever has been in many years. Photos are regularly sent, videos and FaceTime too. I still get to see my niece growing up. From a distance. From a distance. A few times I have been tempted to head there, to Cheshire, some 160 miles away. I know I can’t though. Not yet. I have to stay the course.

In other positives, I have just been fortunate be able to take a holiday (Fran points out that I am legally allowed, but it still feels like a privilege) and proved to myself that I don’t need to be ‘away’ to take a holiday. I even managed to go a couple of consecutive days without checking my work email. As a combination of a workaholic and a control freak, I’ll take that as progress.

People often ask how we’ve got this far. I’ll let you into a couple of secrets. They are staples that have endured over time and I have gone back to them now and over the past few weeks overall.

Deferred Gratification

Also known as delayed gratification, this has got me through many things, especially my PhD. At the risk of stating the obvious, it takes quite a bit of discipline to write a thesis, which in my case was way over 100 000 words. These words need to be thought about, planned, researched, analysed, over analysed. kicked around, drafted, polished and then written up. This is the short version of that process. When I used to get distracted, I used to have to remind myself that the thesis wasn’t going to write itself. I used to imagine what it would feel like to actually graduate. The reward would come later, with hard work, through grift and graft.

This sense of deferred gratification is what stops me getting on the road now. I know I can’t. When I do, and I finally get to see my family, to give them a long awaited hug, to sit in the garden and drink in the surroundings, to laugh together again, it will be made sweeter for the fact I have waited. It is the longest I have ever gone without seeing my family. The day will come though.

Wave After Wave

I’m not a huge golf fan. That said, I find the psychology of sport fascinating and for this reason, I love the Ryder Cup. The aspects of the team preparation are always really interesting to hear about. The team structure and use of Captains, pairings and motivational techniques to create a team spirit in what is largely an individual game. Over the years, the European Team have been particularly good at this. There was one example where the Europeans were particularly meticulous in their preparation, drawing from famous figures across the world of sport. As part of this quest to take in best practice, none other than Sir Alex Ferguson. The slogan ‘Wave After Wave’ is used to encapsulate his famous attacking style which is designed to relentlessly subdue any opposition. No let up, no compromise.

So I approach this time. No let up, no compromise. I can be a bit up and down, and I acknowledge that allowing myself to feel the ups and downs of a wave is fine. Fundamentally though any doubt has to be dealt with, any any lingering negativity met with a positive energy to overcome it. You have to dig deep. And if that isn’t deep enough, dig deeper.

It is this approach that we have also resolve the recent issues with Fran’s Social Work. Thankfully, through a combined effort of my talking, Fran’s knowledge and diligence, and the use of common sense on the part of the Senior Social Worker, we have managed to have the review put on hold until we are out of lockdown. So we haven’t solved it – just kicked the can down the road a little. But at least it allows us to focus on facing more immediate challenges. So when a problem arises, throw everything at it. If that doesn’t work, throw some more things from a different angle!

It is true to say also though that the prospect of further cuts due to a Care Act Easement remains a possibility. There isn’t the space to go into detail about that here, but basically an Easement means that under the Coronavirus Act, Local Authorities can suspend the Care Act. What this has meant in practice for some Local Authorities is significant cuts to social care which have been acknowledged as ‘deeply troubling’.

Creativity

I’m having to make a conscious effort to put myself ‘out there’ with friends via virtual catch ups, check ins, and even the odd attendance at an online disco has been known. I’m also watching films, trying to get out in the garden and I even read for pleasure the other week. Wonders never cease!

Hope

I have clung on to this one too. I still have hope that in the long term, whilst acknowledging there is a long road ahead, that there will be a way ahead and we’ll get through in the mean time. There is always hope. One of the best bits of advice I was ever given was that if things get really bad, you can always allow others to hold on to hope for you. Never underestimate the power of hope, as part of a wider mix of good things.

Wherever this finds you, I wish you well. Here’s to staying the course, and staying safe.

0 Reduced to tears: A social work review during lockdown

I write this blog a day short of three months in self isolation. I focus on the impact of an ongoing social work review for Fran during this time. It is written with Fran’s permission. To be clear at the outset, the purposes of this blog are to document the impact of such a review, carried out in the way it has been, at this particular point in time. In summary, the nature, timing and conduct of the review has been unacceptable and inappropriate in numerous ways from the outset.

I also write it because I have the ability to do so. Between us, Fran and I have 7 degrees. Fran has a degree in social policy and has written on personalisation. Yet still we find these processes mindbogglingly complex, inaccessible and emotionally draining. My worry is for those who do not have the means to articulate these experiences, and the very real risk of them being worse off as a result.

As with all I write, our experiences are just one story of hundreds of thousands of disabled people who go through processes like this every day.

Setting the scene

It is fair to say that Fran has been engaged in an attritional relationship with social work for several years. Her care package, which we are grateful to receive, is fundamental to how she lives her life. She used to use her care package in a holistic and person centered way, to enable a full set of social, professional and personal needs to be met.

Then it got cut. the first things to go were the social and professional aspects. No longer could Fran use her Personal Assistants to do things like drive her to see friends when she was too tired, or attend work functions because performing effectively at a meeting as well as the return drive was too physically draining.

Over the years, I have watched with great sadness as Fran’s life has got smaller and smaller as a result of these cuts.

A previous review began to cut away at the personal aspects. The PA’s do things like cook, wash and iron that Fran cannot do. They also mean that Fran can work. The alternative would be to not work, and be dependent on the state for support. There is nothing wrong with this, but with support it is a matter of pride for Fran that she can work and make a contribution to society as she does so. We have been told that we are the only couple that social workers are aware of who are both disabled, and who are both able to work.

We were able to reverse some of these cuts to the most basic aspects to Fran’s care plan after a previous review, but only after the intervention of our MP, whose timely and dedicated intervention was appreciated.

In summary, the support received has a fundamental impact on the safety, nature and quality of Fran’s life. This support has become more significant in recent times as Fran’s physical health has significantly deteriorated.

Social Work reviews

Given the above context dear reader, you’ll understand why social care reviews are the subject of angst. Sadly, as a result of years of previous experiences, there is little trust in the social work team anymore. What started out as a relationship with social workers which facilitated access to independence, has deteriorated into an adversarial one. The focus of reviews centres on how support can be reduced.

Despite deterioration in Frans health, she had not had a review for three years. They are supposed to take place on an annual basis. That there is such a significant delay is a worry.

Quite why there is a need to undertake a review when it has been three years, and we are in the middle of a difficult period of self-isolation, is beyond me.

Yesterday, I woke up to find Fran in tears as a result of another insensitive request from her Social Worker. This is when I stepped in.

There have been so many ways in which the conduct of this review has been woeful that outlining them in detail would take longer than I have energy to go into now. Some examples include:

A lack of attention to being person centered and to understanding Fran’s needs. Conducting a review when Fran cannot be physically seen is inappropriate

Setting arbitrary deadlines without understanding Fran’s current circumstances e.g. saying if there is nothing heard from Fran in 7 days it will be assumed that the care is no longer needed. This is not conducive to obtaining quality information and has been a cause of distress to Fran.

Repeated requests for information that had already been provided. There have been at least six requests for information over a period of less than 4 weeks. At the outset to this review Fran took a day to completely rewrite her Care Plan with reference to the Care Act, which was 12 pages in length.

Asking inappropriate questions e.g. asking for the ‘rationale behind the need’ for support to maintain a habitable home

When a complaint form had been requested, supplying an inaccessible PDF form which doesn’t allow space for the complaint to be detailed

These are but a few of the problems which have been experienced.

As with previous reviews, the focus appears to be on looking at ways to reduce an already reduced care package.

The review is still in progress. For me it raises so many questions. What is clear though is that it feels like the antithesis of what social work should be about. Where is the support? Where is the care? Not once has Fran actually been asked how she is.

Is this really the best we can do?

We will fight on. We will keep shining a light on these issues. Thank you for reading.

Please Note: I am grateful for the solidarity and support we have received so far. We have had kind offers of legal advice, requests for media interviews, and other generous offers of help. I write this blog partly in response to those requests. At the moment though, we don’t wish to take any more formal steps.

0 Riding the Waves: Reflections on two months of self isolation

It feels like ages since I last wrote to you dear reader. The purpose of this blog is to outline some fragments of thought from two months of self isolation since coronavirus entered into all of our lives.

As I write these words, I do so knowing that these events have impacted on us all in so many different ways. I want to be clear that I do so from a position of real privilege. I am not an NHS worker, putting my life on the line day in, day out, with what can only be seen in my view as a heroic level of dedication. I am not a key worker. My job is not to ensure that people are fed.

My job, at its most basic level, is to stay in. I write this sat in the comfort of my own house, with access to the electricity supply that powers the computer I am using, and with access to heating, food, and a constant supply of clean running water. I am so lucky. On the days when I feel sad, or worried, this is what I come back to.

Brunch

Rewind two months ago today, and Fran and I were heading out for brunch. It was something we had been promising to each other for a long time and not quite got around to. The car park was busy, the restaurant buzzing. People were sat close to one another, packed in tightly, listening to the live music that was being played in the restaurant.

It feels like I am describing another world.

Fran and I had been watching the developing news, and were aware that friends in other countries were beginning to lock down.

Mindset

At this point, dear reader, I need to take you way back in time in order to understand the present day. I warn you that this part of the blog may not be easy to read, so if you want to skip over it, I totally understand.

The thing is, I have always been three things: lucky, impatient, and stubborn. Oh so very stubborn. Each of these can be seen in my arrival into the world, in January of 1983. After a really tricky pregnancy in which I was lucky to have got as far as I did, I arrived six weeks prematurely, determined to see the world early.

“I have always been three things: lucky, impatient and stubborn. Oh so very stubborn.”

Truth is, I shouldn’t really have survived, and were it not for some brilliant medical care, I would not have been here at all.

Knowing this fact has always shaped the way I have lived my life, and thought about it too. Knowing that just by living, you have defied the odds, few things are scary or formidable. I am aware how precious every day is, and filled with a determination to make every day count.

Growing up, I also saw the fragility of life first hand. I spent time in a special school before I went onto mainstream. On so many occasions, I learned with great sadness that friends I had did not return to school and had gone, as we were told, to a better place. As I grew up, my mum, who by sheer coincidence went on to work at the same school I had since left, visited me with that sombre look on her face and that tone of voice to deliver news. It happened with such sad regularity that I knew what she was going to say before she spoke the words: Someone I knew was no longer with us.

I write these words in order to set what follows into context. Whilst I might treat coronavirus with respect, I will not let it fundamentally change who I am, nor alter the fundamentals of how I see life. It might change the way and how I choose to live it for a while. Who I am though, will remain unchanged. There are some things that this virus can and will not touch, nor will it define.

Lessons in marking time

It is funny how the various, seemingly tangential strands of your life can come to be useful in ways that you never imagined were possible. The contemporary relevance of my PhD is one of those things.

In a previous chapter of my meandering career to date, my chosen field of study was offender rehabilitation. As part of this work, I chose to speak with people who agreed to talk to me about the serious crimes they had committed. One of the aspects of these conversations was how they had experienced what had typically been quite long spells in confinement, including a life sentence in one instance.

Now clearly the context is very different here, but elements of this have sprung to mind of late, typically regarding how to mark spells of time which might span several years and are of a potentially unknown length.

How do you do that? Well, in the most pragmatic way, one takes things a day at a time. Each unit of time is carefully deconstructed and reconstructed. Fashioned in ways to make it more palatable.

When I think back to some of what I heard during those conversations, my own marking of time feels so much more straightforward.

Making the time count, and riding the waves

Given my own mindset and the circumstances I have described, my own task is to spend the time keeping myself safe. It is easy for me to feel powerless at times – and my way to respond to that has been to try and make the time I have count.

Another way in which I am fortunate is that I have the work, together with the structure, routine and chance to make a difference that it offers. Whilst it isn’t the NHS front line, it still provides a way to make an impact. Working in disability sport, I have a great job, and am stepping up to help those I work with navigate challenging waters.

I also write lists, lots of lists. Lists of things I want to do, people to see, places to go when this is over.

There will be lots more work to do too. One of the things I have noted are increasingly over simplistic references to ‘the vulnerable’. There is lots to be done here in order to ensure that those with impairments like me are not lost in this talk. We have to keep seeing the whole person.

“We have to keep seeing the person, not the vulnerability.”

It is ok too to feel sad. I have cried, felt sad, missed things. I have also danced with Fran in the kitchen, and shared drinks with friends via virtual pubs. I have had the privilege of speaking with and interviewing world class athletes via Twitter. Positive creativity is a must in these circumstances.

Faith is too. We will get through this. My belief in this, and in the capacity we all have to respond, individually and collectively, in the most positive ways possible when faced with challenge, remains undented.

Look at the fundraising efforts, the collective displays of solidarity, the new outlets found for expression and invention.

There will be costs and bumpy times ahead, but we will ride this out. Hopefully in some ways, we will be better for it too.

We can do this. Together.

“We can do this. Together."

0 PIP Stories: What the Foucault?

The importance of theory

Let me take you back in time dear reader. When I was doing my PhD, I had a session with my supervisors. I had very clear ideas on what I wanted my PhD to be, and what I didn't. I wanted my PhD to be a very practical one, that wasn't bogged down by what I thought was a lot of dense and obscure theories that didn't mean very much.

However, it turns out that far from constraining the work that I was doing at the time, looking at the work I was doing through a theoretical lense actually helped me to see what was going on in a broader sense. In this way then, theories give us a way to view things, and a set of tools to view them in more detail.

Enter Foucault

So with some trepidation dear reader, I embraced theory, and in doing so, discovered the French professor called Michel Foucault. He was interested in a lot of things, and though not without his critics, is widely considered to be one of the most important and influential thinkers around.

In the context of PIP, Foucault is important as one of the things he is interested in is power, how it is used, and with what consequences.

Using some of Foucault's ideas, and those who have followed him, a much wider exploratory space is opened up, which then become about bigger questions, and helps us to find better solutions. So PIP is not seen in its own right, but as part of a broader analysis of policy and practices in relation to disabled people over time. Consideration of how power is used also brings us to consideration of how power should and should not be used.

That is where the stories come in, and why your voices are so important. Every story counts in this sense, and this is why I keep raising awareness about this and asking for more stories to be sent in. Each story received adds to the robustness of the work that is being undertaken, and makes any conclusions drawn from analysis more credible.

So what are you doing now?

Good question! There is lots of reading, coupled with the things I talked about in last week's blog. Reading Foucault is hard (his ideas are complicated, and need to be read and re read very carefully to be grasped) and a bit like a jigsaw.

The first step in a jigsaw is gathering all the pieces together. In the case of Foucault, his work is a bit fragmented and takes the form of translated lectures and interviews as well as texts. There are also many others who have been inspired to follow in the footsteps of Foucault, so this subsequent work needs to be considered too.

It is early days, but having used some of this work when I did my PhD, I know that it can be really useful in this context, and critically, will help to add depth to the understanding of what is happening in and around the PIP process.

Aside from the reading, momentum is good, with over 560 stories received at the time of writing. Each time I tweet about this work, I receive more stories from people, so it is important to keep doing so to maintain that level of awareness. More and more people are learning about this, and I'm really grateful for all the support I have had so far. A big thank you 🙂

I also have some important ideas from the stories I have received to date, which I'll share when the time is right. It is key that any work I do is as careful and considered, so this may take some time. I am keen to share these with you, but I also need to take time and care so these ideas are as good as they can be.

As my mum always said, slow and steady wins the race. Here's to continued steady progress!

If you have a PIP story that you feel able to share, please click here to do so.

0 PIP Stories: Fire, composure and compassion

Let me introduce you to a conversation that I have had a lot of over the past few weeks. It goes something like this:

A friend: 'So just how do you do it Chris?'

Chris: 'Do what? What have I done now...?!'

A friend: 'No, not in that way! I mean all the PIP stories stuff?'

Well. I hope you are sitting comfortably, because now I'm about to tell you. But first, some context!

Fire in your belly, composure in your mind, compassion in your heart

The above saying is something I always come back to with the PIP stories work, especially when the going is tough, which it sometimes is. Make no mistake, it is my choice to take this path, but its not always an easy one to create and follow. Thats where the fire comes in. I just remember the stories I have received, and what they have revealed, and my resolve is restored.

Composure is needed in lots of ways, especially to make sure that fire is well used. As I have said before, running this race is a marathon and not a sprint. It can be easy to forget that. As I'll shortly outline, making this work happens also involves the juggling of a lot of components, all of which need careful consideration.

Compassion. Doesn't the world need more of this, especially of late? My parents have been (and are) one of the biggest influences in my life. A saying of my dad over the years has been to be 'firm minded, and tender hearted.' Compassion is there as I think this is what the PIP process needs more of in general too.

I'm privileged to be given the insight I am into the experiences people share with me, and one of my stand out reflections is that I think the whole process would be vastly improved if it was completed with greater levels of care and compassion.

The PIP process would be vastly improved if it was managed with greater care and compassion

The elements of the PIP stories campaign

There are five main elements of the PIP stories campaign. which I will now outline. Each element is equally important and inter related.

a) PR

The PR aspects to the campaign are important to keep this work on peoples radar. The primary goal at the moment is to keep growing the number of PIP stories, as each one helps to strengthen the robustness of the findings. Thats why I say every story counts. Activity on Twitter and Facebook is a big part of this, along with the production of things like the FAQ and posters to help spread the word.

Recently I have also started to work with some organisations to help me spread the word too. I've deliberately and carefully engaged with a range of people in order to make sure the reach of this work is as big as it can be and that as many voices are heard as possible.

A big part of this work is what goes on behind the scenes and I'll do a lot of talking with people to raise awareness about what is being done and why. I've deliberately been quite transparent about this in order that people can also have a greater understanding of my reasoning, approach and future plans.

PR also means looking at analytics to get a view of how I'm doing and writing a certain weekly blog....

b) Admin

Without keeping organised, it would be very easy to get lost with everything. Making sure I am on top of my emails, calls, planning and to do list is key.

c) Research

Knowledge is power, and this particularly is the case in the world of PIP. Via the research I'm doing I want to develop a proposal for some academic work, so this means doing the reading needed to so. Research also means looking at things like the technical guidance and the latest legal rulings on PIP.

d) Rest

I put the above in to partially remind myself to do this! I have to keep my own batteries charged up in order to make sure that this work is sustainable. This means making sure that I get at least some down time via breaks and time off at weekends. Supervision is also another key part of this so that the emotional, practical and intellectual demands of these endeavours can be shared in my own safe space.

So a typical week(end) in the life of will involve the careful balancing of the above elements. Here's to further progress as a result!

You can share your PIP story, by clicking here. Thank you for your support with this work.

0 PIP Stories: Survivors guilt and unheard voices

There was a mixture of emotions. There was relief. There was reassurance that things were as I saw them and felt they should be. There was also a lot of guilt. A kind of survivors guilt. This is something I’m still experiencing.

This was how I felt after I received my own result of the PIP assessment last year. In this post I want to focus on the 'survivors guilt' that those who have been through the PIP process may experience. My own sense of survivors guilt is something which I have rationalised, but remains something I can put my finger on.

Though it is still too early to talk about emergent issues with any great certainty from the PIP stories I have received to date, it is fair to say that reference to the psychological effects that the process has is a notable part of some of the account received.

Part of any good research methodology is considering the voices that might not be represented in the accounts that you receive and to take measures to address this in order to make sure that you receive a range of perspectives.

Some people have said to me that they haven't written in to me because their process was as they expected it to be, or not as bad as they had heard it was going to be or imagined it would be.

Or because they felt a kind of survivors guilt. My message here is simple: Every story counts. I want everyone to be heard in this, and each account has an equal value and importance. Equally, I understand that the PIP experience is not something that everyone is able or wants to revisit. It is really important to keep yourself safe, and your own wellbeing comes first. I'd rather that you didn't give your PIP story than risk compromising this.

I'll say it again as it bears repeating. Every story counts. I want every perspective to be heard. I want to hear your voice.

Every story counts as part of the PIP stories work. I want every perspective to be heard.

So what is this coding you keep talking about?

Ah, dear reader, this is a good question! Coding is basically how you choose to approach the process of working with the stories received. There are entire books devoted to the subject such as The Coding Manual for Qualitative Researchers by Johnny Saldaña. This is the kind of detail that matters. It is a bit like going on a car journey. Sometimes you can just set off and follow your nose. At other times, you need a route planner. This is a journey that needs careful planning, so I am resisting the temptation to begin the coding process without having first carefully considered my approach.

Other developments

I have now developed an FAQ to answer some questions I have been asked about this work. I hope you find it useful, and do let me know if you have any further queries about this work specifically.

Lots of people have been asking how they can help, which is much appreciated. The best (and easiest!) way to help is by sharing the call for more PIP stories by clicking the Facebook and Twitter buttons below. Thank you for your support.

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