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On a long enough timeline, the survival rate for everyone drops to zero

August 11, 2014 8 comments

Going to keep this one short, there is enough written about the limitations of fighting metaphors to last a lifetime (however long that is). Susan Sontag wrote Illness as a Metaphor back in 1978, since then many, many others have visited this territory. I was reminded today of Jay Rayners obituary for John Diamond (hat tip to Michael) and surprised to see it was 13 years since John Diamond died. I can remember reading his column and his book, years before cancer visited our family, and being humbled by his frank honesty, a quality also present in Kate Granger‘s writing in more recent times. The Metaphor in End of Life Care project at Lancaster Uni has also recently been exploring this in relation to death, dying and end of life.

So, why given all this am I still typing. To register my displeasure at the current Cancer Research UK campaign #WeWillFight. The campaign calls for people to ‘show cancer how they feel by sharing your fight faces’

While looking at Cancer Research UK resources for this post I have to confess it wasn’t easy to identify what the campaign was about, or the thinking behind it, but I did find this video [click to visit their site in a new window and watch] on The Bank website ‘We Will Win the Fight’. Wow, apparently The Bank produced this ad, with a ‘bold creative concept’….that personifies cancer with a menacing male voice and a soothing woman who will make it alright. To be honest I found this ad almost as nauseating as the #WeWillFight campaign, although it’s not clear whether they’re related or not.

Those of you who have read this blog for a while will know that my Dad lived with cancer for five years. He described his own experience as a fight, ex-navy and military through and through, the metaphor worked for him. At his funeral I gave the eulogy and felt like I had to address metaphor:

DadOofSphoto

Dad didn’t lose his battle, or succumb to cancer; he stoically, bravely and steadfastly lived his death as he lived his life, with courage, dignity and a concern for others.

I think there’s a big difference between someone facing cancer choosing a metaphor that works for them, and a large well funded organisation using a fight metaphor to campaign with. I’m not convinced that Cancer Research UK should be encouraging people to ‘fight’ cancer, I’m really uncomfortable with the language and the implication. I have seen on twitter tonight that they ‘tested’ the campaign before launching. I accept that their focus group may well have said it worked for them, it doesn’t work for me. Oh and for the record testing ‘join the fight’ isn’t the same as implementing #WeWillFight.

The week after the centenary and commemorations of the start of World War One, with war raging in Gaza, Iraq, Syria should a cancer research charity really be encouraging people to share photos of themselves with fighting faces? I can’t help but feel this is an incredibly poorly executed campaign, almost lazy in its approach. Can imagine it now, the social media crew raving about the #nomakeupselfie campaign, which for those with short memories was not started by an agency or a charity, but completely by accident by a couple of punters. What verged earlier this year on a narcissistic trend is now becoming tired, it’s slacktivisim gone mad. I’ll watch and wait to see if Cancer Research UK can track and evidence their income as a result of #WeWillFight, or whether what they actually end up with is a short lived social media campaign of people posting pictures of themselves pulling ridiculous poses.

From my perspective the sooner this campaign is over the better, I can’t get past posting your picture online being more likely to indulge your self than ‘fight cancer’. If you really want to make a difference, look at what you can do to improve your own lifestyle; sure donate some cash, spend some time volunteering, do whatever works for you, but please don’t anyone ask me to post my fighting face and please don’t claim that you’re helping by doing so.

My small contribution to improving people’s experience of cancer, is this blog, and the posts within it. From my perspective the sooner we develop a more evolved language and understanding of cancer and illness the better, so feel free to join in the discussion.

For those wondering the blog title is a quote from Fight Club…it’s also worth remembering when you introduce fighting metaphors to cancer.

My 60 thousandth tweet

I appear to be developing a bit of a habit of marking the round numbers of thousands of tweets with a blog post, not sure why really other than it seems good to mark the symmetry in some way, and perhaps also to take an opportunity to highlight a few things.

My 35kth tweet was marked by a blog post about the amazing Kate Granger and the need to re-learn the art of dying. Written back in May 2013, I’m delighted that a year later I had the opportunity to meet Kate, and even more delighted that she is still here, helping and inspiring many of us to face death and our thoughts about it on a regular basis. Long may that last.

My 50kth tweet was marked by a blog post about the indomitable Sara Ryan and JusticeforLB. Written six months ago at the start of February, it introduced my world to Sara, to LB and to the campaign seeking to raise funds for LB’s family to have legal representation at his inquest. Anyone familiar with this blog will have seen my posts since, and my own attempts to raise awareness and funds.

This left me in a bit of a dilemma as my 60kth tweet approached. Kate and Sara continue to do their thang, so who or what was of similar magnitude of importance? This got me thinking and reminiscing.

Five years ago I had the absolute privilege of a place at the Do Lectures, a residential like no other, a whirlwind of hope and possibility on the beautiful Fforest campsite in deepest Wales. A truly amazing, life affirming and life challenging experience for me that I really should blog about some time. The following year once the 2010 Do Lectures videos were available I set aside a weekend to watch them. The stand out film for me was this one:

I can remember the first time I watched it. Feeling an intense optimism for the human race, balanced with a feeling of being sanguine, jaded and a little old, in fact it was possibly one of the first times that I realised I was no longer young! I’ve spent my life being told I’m naive and too optimistic, but no longer could I consider that youthful naivety! Fast forward four years and I was scrolling through instagram the other day when I realised that Maggie had to be the feature of my 60kth tweet.

Having followed the journey of this amazing woman for years now, the world needs to hear more of what she is doing. I don’t for a minute believe that every one of us can, nor should be, like Maggie Doyne in our approach. However I completely agree with her that the human family can, and must, do better. I watched Maggie’s Do Lecture again last night.

I was left with a similar sense of awe at what she has achieved, but also a glowing ember of possibility in my soul. Of hope for humanity, accompanied with a niggle and a doubt of whether I’m doing enough. More soul searching ahead for me I think, I’ll keep you all posted on that, but in the meantime please take the time to watch Maggie’s Do Lecture, it’s 25 minutes well spent.

I hope one day to make it to Nepal, and if I do I’ll hopefully visit Maggie and her amazing family at Kopila Valley, for now you can keep up to date with the happenings at the Blink Now foundation here.

Tribes, camps and collectivism #JSWEC #JusticeforLB

July 24, 2014 4 comments

Short post from me today because it’s Day 2 of #JSWEC, the morning after Social Care Curry and I’ve a workshop to run later today and I’m selling VivaCards, so lots and lots of reasons why this can’t be a long or detailed post. I offer that context to also point out that this is not a well considered or reflective post, it’s just me sharing where I’m at with the world.

Last week (following Bubbgate) I wrote a post about social cares love of a false dichotomy, this week I am seeing it invested on a micro level. Last night there was a panel debate at JSWEC on A Question of Social Work. Take a look at the hashtag on twitter to get a flavour, suffice to say I was completely underwhelmed. Lots of talk about social work or academia, ‘dead’ or inspirational practice, adults or children….we’re obsessed with these bloody dichotomies, and it helps no-one.

This morning I was greeted by a tweet clearly stating that ‘Only parents see the real crisis’ this was in relation to the #JusticeforLB campaign. Maybe it was just a slip of the finger, maybe it was actually meaning what the author went on to clarify, about her own fear for her child and so on. This is real, and valid, and needs to be acknowledged. The first statement though, that’s just exclusionary. The making an issue about parents, or about LD, or about ‘insert a.n.other group’, is no different to the level of dichotomy in our debate last night.

Debs flagged this in relation to the JusticeforLB campaign ten days ago, in her post Divided we fall:

However, the one thing that continues to amaze me is the fact that so much of our strife and stress comes not from practitioners and poor systems, but from other fellow-parents or from those who are supposedly there to support us – those who should know better – not working together or judging us.

Recently, there was an amazing social media campaign: 107 days – Justice for LB. The one thing I loved most about this campaign was the absolute solidarity it created.  Everyone stood with LB’s family and supported them.  Everyone was working together towards the same goal. I felt proud to be part of that amazing Community. We all left egos at the door, politics and personalities didn’t matter; everyone just wanted to get on board and work together.

Then the campaign finished, making some great achievements in the process, but with it went that feeling of togetherness and a true team. We have quickly reverted back to making it about ourselves and how these thing affect us rather than thinking “wow, we managed to achieve some great things together, what next?”

The minute you start identifying as a group or tribe by any characteristic, you immediately exclude some. The minute you reduce human rights issues to a particular group issue, you immediately exclude some. The minute you make discussions about social work or research, you immediately exclude some. Maybe I’m naive (I’m fairly confident I am) but why can’t we focus on a collective whole, what we all have in common, what we want to achieve. Why can’t we talk about our work or our passions and the difference it makes, rather than our professional/personal labels?

The only future I can see is one of collective response and responsibility. As someone tweeted in the debate last night we’ve been having these conversations for about 40 years, and I dread to think how many more people need to die before something is actually changed with provision to prevent that. Final thought on this for now is from Seth Godin:

‘“Life’s too short” is repeated often enough to be a cliche, but this time it’s true. You don’t have enough time to be both unhappy and mediocre. It’s not just pointless, it’s painful’.

Taken from his book on tribes ‘Tribes: we need you to lead us’, well worth a read. Oh, and this is the only sort of camp I’d want to be on these days:

9188531223_29a02e9ae5_oSo whose up for some glamping and power planning – you’re all very welcome!

 

A fascination of false dichotomies in social care

July 18, 2014 2 comments

Short post from me highlighting something that I think is growing more popular in our conversations online, and is to be blunt wildly unhelpful: the rise of a fascination of false dichotomies (I made up the collective noun). What is a dichotomy I hear (some of) you ask?

Screenshot 2014-07-18 08.09.25A dichotomy is a contrast or split, so what’s a false dichotomy? I’m sure you’re all familiar with it’s use, essentially its the suggestion that any situation must be a dichotomy e.g. black or white. This line of argument completely ignores the grey in between, or the full colour option of course. Painting something as one thing or another, explicitly or implicitly, completely misses the fact that in most situations there are more than two choices.

Rarely in life are there only two, completely contrasting options. When a task or situation feels overwhelming, it makes sense to try and simplify or reduce things down to manageable options, however, as tempting as they are to believe I think we need to be wary of false dichotomies. Very rarely is it simply a case that our choices are A or Z; that one political party is bad, a.n.other political party is good; that care is either exceptional or dire; that you only critique if you don’t care. Let’s turn to my friends on wikipedia to explain this further:

When two options are presented, they are often, though not always, two extreme points on some spectrum of possibilities; this can lend credence to the larger argument by giving the impression that the options are mutually exclusive, even though they need not be. Furthermore, the options in false dichotomies are typically presented as being collectively exhaustive, in which case the fallacy can be overcome, or at least weakened, by considering other possibilities, or perhaps by considering a whole spectrum of possibilities.

So why are false dichotomies on the rise? (This assertion is based on my twitter observations, complete anecdote, no fact involved). I think life is complex and simplifying helps people to become involved with your issue and understand complexity. I think sensational headlines sell media stories. I think we’re growing lazy in our inability to truly debate or consider multiple options, which leaves us in a race to the bottom.

There have been a couple of blogs this week focusing on the JusticeforLB campaign Divided we fall and Justice at the margins. These posts reflect on how the #107days campaign worked, why it managed to engage people and bring together a momentum around a loosely defined common cause, and the broader learning. It has been great to see other people’s interpretations and what struck me was the power of the diversity of actions in #107days. It was an antidote to dichotomy, there were 107 very different days, responding in a myriad of ways to the very open call for involvement. Everyone was welcome and everyone was accepted and there really wasn’t too much ego or sales or agenda pushing.

So why is JusticeforLB relevant to this, and why does any of this matter? Well, maybe it doesn’t, or maybe it does, or maybe it does sometimes for some people in some places. It really isn’t a black or white issue (see what I did there).

In a week when the learning disability world is yet again wondering whether they are taking part in some big endurance experiment in shite communication and appalling 1950s decision making, at the hands of Stephen Bubb via NHS England this time, I think it is important to remember that false dichotomies help no-one. The next time you read a blog post or a press release or a tweet from one of the ‘key players’ in this world, ask yourself what’s behind the words coming out of their mouth, and why they choose to construct messages as they do. In a nutshell I see a lot of people and ’causes’ using false dichotomies to try and, to be blunt, scare people into action or stupefy them into inertia.

People with a disability, their family and friends are expected to be grateful, to sit quiet, to not act, to accept that the options are: Fairly Rubbish Option One or Even More Rubbish Option Two. Occasionally an Even More Rubbish Option Three is offered. Of course people feel like they are backed into a corner, and of course the implicit alternative option is always nothing. You are left accepting rubbish in the belief that if you don’t, then you will get no support, no involvement or help. Crumbs from the table sort of thing.

There was a corker of a false dichotomy last night in a Mencap statement about their CEO’s involvement in Bubb’s breakfast:

I and Mencap have a choice about whether we want to influence and shape what happens or sit on the outside and critique activity….Currently, this is the only opportunity I see to transform the lives of people. As such I will be involved and do everything I can to make any group working towards this end a success.

Fairly Rubbish Option One: Whether we want to influence and shape what happens

Even More Rubbish Option Two: Sit on the outside and critique activity

Implication: Everyone should be grateful that Mencap (as stitched into the problem of learning disability provision as the next large charity that claims to represent people with learning disability, but is also a provider of services so has a MASSIVE vested interest) are involved.

There is also of course an appallingly passive aggressive inference at play in this wording too, that you join Bubb’s brekkie, become a Bubb’s babe (let’s not forget the indomitable Su Sayer from United Response), or you are an outsider (like it’s your own choice) and that critiquing activity is bad. Maybe if Mencap would care to look in at itself and critique it’s own activity they may not be so quick to dismiss alternative options.

Perhaps more importantly why, oh why, does the CEO of ‘the voice of learning disability’ see this as ‘the only opportunity to transform the lives of people’. Bloody hell, how uninspiring. Get out your office, ditch the breakfast meetings, work with your local groups, meet the people you’re the voice of, listen to what they have to say, listen again, and listen some more – then get on and do it. It is indefensible to me that an organisation that claims to be ‘the voice of learning disability’ claims its only option was to join that group, in that way (and of course waltz Bubb off to look at one of their own homes after breakfast to ensure he understands the complexity, and great work that they do).

Where are the values that should be threaded through the core. Where was the person saying no, I don’t think this is appropriate. Why wasn’t the voice of learning disability saying we should start by holding breakfast for 100 people with a learning disability, we will serve them breakfast and listen to what they have to say (yes feel free to take that idea and run with it, we can all look away while it’s hastily scribbled into The Plan). Why are we living in a world of false dichotomies?

I am of course aware that some may argue that my painting large charities as incapable of providing services and advocating for their ‘client’ group is a false dichotomy in itself. I’m not sure, I have no doubt that it should be possible to advocate and provide a good service, I just don’t see anyone doing it very well. What I did see in #107days was over a hundred different ways of addressing a situation, as personalised as you could make it, people with disabilities involved and at the heart of everything (can’t really comprehend why they wouldn’t be), no CEO on a large salary, no communications department issuing scary false dichotomy statements, no breakfasts provided, just a huge collective group of brilliance.

Please stop insisting on black or white, the answer is in the grey.

The moment of truth #hairhack

July 2, 2014 5 comments

Wow, what a day. I pride myself on being quite good with words, they’re my preferred tool, and usually I can sit down, think for a moment and the fingers just start typing and the words come.

Not today.

Today I can’t find the right words, or rather I can find the words, but not the syntax to give them the impact I’d hope for. The words merrily skipping around the edges of my brain include terrified, excited, intrigued, emotional, angst, joy, pride, nerves, laughter, cackle, waver, manic, loss, grief, proud, LB, Bobby J, death, life, hope, belief, conviction.

Luckily for me, and for you reading, and for my crowd-funders who have pledged their cash and financial support to #hairhack, the truly awesome Paul Clarke had volunteered his services to capture the day. What follows is just a selection of his shots, because when words fail, pictures speak – at least these ones do.

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Lucy has been my hairdresser for about eight years. I’m the worst possible client, I have no idea what I’d like but I know what I don’t like, I get *very* easily bored but have zero commitment to maintaining any style, I’ve probably been close to the wire or late for about 70% of my appointments in that time, and I’m always hoping she can somehow work magic. In that eight years Lucy has had two babies and Selena and Laura have had to put up with me, but I can honestly say I’ve never met hairdressers that put me more at ease. When we arrived today Lucy and Selena had it all planned, they knew exactly what they were going to do. After a few tears, Lucy’s not mine, for once I didn’t cry, and a final selfie, we were off…

Hairhack_2July_014_s 2Hairhack_2July_016_sHairhack_2July_018_sHairhack_2July_020_sHairhack_2July_024_sHairhack_2July_025_sHairhack_2July_026_sHairhack_2July_033_s 2Hairhack_2July_034_sHairhack_2July_036_sHairhack_2July_038_sHairhack_2July_041_sHairhack_2July_044_sHairhack_2July_046_sHairhack_2July_047_sHairhack_2July_055_sHairhack_2July_057_s
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Once the deed was done, rinsed and tidied up, any mixed emotion or tension was definitely replaced with relief and joyHairhack_2July_068_sHairhack_2July_069_sHairhack_2July_070_sHairhack_2July_074_sHairhack_2July_077_sHairhack_2July_081_sHairhack_2July_083_sHairhack_2July_088_sHairhack_2July_087_sHairhack_2July_089_sSo there you have it, my contribution to Day 105 of #107days. In honour and memory of Bobby J and Connor, in gratitude to Rowcroft Hospice, and in awe of Sara and Rich and their fight for answers and improvement.

I’m not sure I would have got as far as today if it wasn’t for all of you who pledged your support, if you’d been meaning to donate, you still can and really every penny does count. The current total is £5,440 but I’m hopeful we’ll find another £60 to make it a nice round number, unless of course anyone wants to pledge for a half day workshop on social media campaigning.

I’m very grateful to Abi and my gorgeous nieces, Libbie and Phoebe and to Em and Jo who all came along to provide moral support. I’ll be forever indebted to Paul for these amazing photos (there are more but you’re not having them all at once) and to Lucy and Serena at Stylz who jumped at the chance to support me in my headshave, despite a guarateed loss of business. So if you need any photos taking, or if you need a haircut (I promise they wont scalp you unless you ask them to), you know what to do.

I’d better finish before this turns into an Oscar style speech, but thank you, really, to all of you….now here’s me trying, and failing, to look mean! So if you’re reading this and you’ve yet to dig deep, please do so. Thank you.

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Liberation promised #hairhack

July 2, 2014 1 comment

Today is the day, at 2pm my hair will come off.

All of it.

I’m completely delighted to share that the running total of funds raised for Rowcroft Hospice and JusticeforLB is £5,380, a huge amount of money that will support the great work of both causes. There’s still time if you want to give us a quid or two, you can donate here.

I promised I’d blog honestly about how I felt throughout this campaign and this morning it’s a now familiar feeling of excitement, intrigue and mild panic. The one thing that everyone keeps promising is that it will be liberating. In the words of Yul Brynner:

In a funny way the shaving of my head has been a liberation from a lot of stupid vanities really, it has simplified everything for me and has opened a lot of doors.

So I’m optimistic, I’m not sure what exactly I’m being liberated from, but I do like the idea of not worrying at all about what my hair looks like. Can see that it will make for a simpler life, as long as I don’t get sucked into caring more about my appearance, just keep channeling Dad’s voice on that ‘for goodness sake, it’s [insert activity] not a fashion parade’.

Womens-march

Pic taken from this article on Women’s Liberation Origins and Development of the Movement. I can’t say I’ve ever really related very well to the women’s lib movement (which never goes well when you say it out loud).

It could be that I’m one of the lucky few born late enough to have reaped the benefits of this early action, or I just don’t notice my oppression, or single sex secondary education supported a self-belief and confidence in me. I feel sure that choosing to use two male names has opened doors I wouldn’t have known were shut to me, and I suspect that I’ve subtly chosen different values to pivot my choices around. I’m really not sure, but I am intrigued by the notion of being liberated. I also completely sign up to judging ourselves as people, and in the notion that accepting yourself is an act of civil disobedience, I’ll have me a bit of that.

I care about equality, and human rights for all. I care about everyone having access to a good life, and a good death, and #hairhack is just my small action to support that. I look forward to my liberation!

I’ll leave you with the Stephen Malkmus track that samples Yul Brynner (as shared with me yesterday by The Hatt).

Three hairy days left #hairhack

June 29, 2014 1 comment

It’s been a while since I’ve blogged, been off grid for most of June. Not before the #hairhack fundraising target was smashed though, thank you all so much. We’re past £5k now, beyond my wildest dreams, and it’s such an amazing feeling to know I can donate a decent pot of cash to Rowcroft Hospice and JusticeforLB. That said some of you missed the original campaign and have been asking about donating, so I’ve set up a GoFundMe page here. Please feel free to donate and share widely.

Anyhow thought I’d better confess that while I’ve raised a shed load of cash, I’ve not managed to achieve the other goals I set myself:

  • to keep my hair in tip top condition it currently looks like it’s made of purple straw
  • to lose a few pounds or more to minimise chance of my head being mistaken for a bowling ball
  • to follow some sort of mystical beauty regime to ensure my skin and scalp was in great condition instead it has all the hallmarks of an all inclusive buffet for mossies

What can I say, going purple was brave and straw is a useful material, I’m too lazy and lacking in discipline to bother with weight loss, and as for the beauty regime it was too mystical and the mosquitos have to feed somewhere!! In all seriousness I think I had a mental image of what I’d look like with no hair that I can categorically tell you I’m never going to meet.

I’m not a very vain person (see points above) and I obviously don’t care enough about what I look like to exercise, eat well or keep my hair. That said, even I am starting to get a few olympic sized butterflies about what it will be like to have no hair. As a very self conscious teenager and young adult I wore all the usual, baggy jeans, rugby shirts, shapeless hoodies, avoided make up with a passion, I didn’t really want to be noticed. Well I was a huge contradiction, I didn’t want to be noticed for my looks, but I craved debate and discussion and nothing pleased me more than my opinions being heard and considered. Through it all I had very long hair, it was like my superpower confidence generator of sorts!

Not for long though. A few people have said I’m brave, more that I’m foolish and when I’ve had the occasional wobble I have wondered what the hell I’m doing.

Then this week I had the absolute pleasure of attending TEDxHoP, an independent TED event organised by the public engagement team from the Houses of Parliament. All of the talks will be available to view on their website in due course (there isn’t a single one I wouldn’t recommend watching, honestly) and you can see Paul Clarke’s awesome photos of the day here.

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If you look at Paul’s photos (and you really should) you’ll see the number of people, women especially, with awesome hair. I’m not sure if this is above normal, or whether I’m genuinely noticing hair differently as I know #hairhack is imminent. In fact, scrub that, I know I am I’ve started comparing women’s hair to mane’s, there was a woman with a great mane on the tube the night before! Anyhow after being spellbound by Brooke’s voice and hair, it was Francesca’s barnet that caught by eye straight up after lunch. This one is cropped and sleek and chic and way more attainable for me (I hope) in the not too distant future.

TEDxHOP_27June_047

What followed though was a balm to my soul. Any doubts or wavering about #hairhack were neatly packaged as indulgent vanity and brushed aside in one foul swoop by a brilliant talk by Francesca, the wobbly comedian. Francesca’s talk covered her childhood and adolescence and the moment when she first realised that she could choose to accept herself:

I hadn’t realised that I could choose how to view myself. I hadn’t even realised that, somewhere along the way, I had given that vital power away – the only power I possessed, and I had given it away without even knowing it. I never looked back.

You can read more here. Francesca’s appraisal of modern media had the audience in stitches, my favourite one liner ‘no wonder we can’t be worried about changing the world when we’re so worried about cellulite‘. Francesca’s talk culminated in the assertion that accepting yourself as you are is an act of civil disobedience. Just what I needed to hear.

So now, in three days time I’m shaving my head. Like properly all off. I cut my hair short a few years ago and have spent years growing it long again and it currently sits about a third, to half way down my back. Last time I got it cut (about eight weeks ago) I had a fringe cut in and to be honest it’s a small miracle I’ve not cut that off myself, it’s so irritating. So I’m concentrating on looking forward to having no hair, no maintenance, wearing my new sunhat and having the conversations that I hope it will generate, about death, dying, hospice care, my Dad, JusticeforLB, Connor, learning disability and so on.

Whatever the reality of my bald noggin, I am proud of my actions and delighted to be generating discussion and funds, and the next time I have a wobble I’ll refer back to Francesca and her wobbly revolution, because it’s who I am, not what I look like that matters, hair or no hair.

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