#WordyandWheelyWednesdays: A Hiatus for Health

Hello my lovely readers

A very short post this week, just to let you know that I'm taking a slightly lengthier break from blogging for my health. Physically things are pretty stable but, in part because of that, my emotions are very close to the surface. Now that my bodily pain isn't as present, which you may read about here if you'd like, there is more space for feeling everything else.

This is progress, but it's hard work, so I need to take some time.

I hope that's understandable.

I'll be back when I can - in the meantime, be kind to yourselves.

Jx

#WordyandWheelyWednesdays: A Week Off pt 3

Hello my lovely readers

I very much wanted to write a proper post this week, following on from World Cerebral Palsy Day, to get back into the swing of this blogging thing - it's the very least that you loyal regulars deserve. However, due to a combination of traipsing across the country, a heavy workload, and an *interesting* mental state, that hasn't been possible. Usually I'd apologise at this point, but yesterday was World Mental Health Day, so instead I'm merely going to state matter-of-factly that I'm taking a week off.

Love until next week (and remember it's okay not to be okay)

Jx

World Cerebral Palsy Day 2017

Hello my lovely readers

The keen observers amongst you may have noticed that have missed two #WordyandWheelyWednesdays posts - last week's and this week's. Sorry about that. Last week, I was zooming across the country and had very little time to think, let alone write. This week, I was on the final day of BBC Class Act, a course for actors with disabilities in which I had the honour to participate (a little more on that below). Hopefully, this post will make up for that absence, especially because I was going to write it as an extra one anyway.

Today is World Cerebral Palsy Day. It usually falls on the first Wednesday of October, which made it the first entry in my #WordyandWheelyWednesdays series, when I wrote about some of the things my CP has taught me. This year, with it being on a different day, I'm trying an alternative tack - in the spirit of some of the things I've learnt over the year since that first post.

These things, as is only apt in a post written on a blog called Wordy and Wheely for a day about Cerebral Palsy, have to do with both my body and brain. They are inspired by my efforts with my physicality (epitomised by my recent walk at Parallel London) and with my profession (the combination of my PhD and its practical application in my acting.) I wanted to write about them today because I've realised that they are essentially held together by my CP. After all, it's the reason I got into acting (and on to Class Act), it's why I'm academically and artistically invested in disability representation in the arts, and it's the impetus behind my unconventional forms of transportation and exercise. I said as much in last year's post, and even managed to state that I love my body, but I was just at the beginning of my journey towards acceptance. It took me twenty-five years, but I really feel like my twenty-sixth year has brought me further forward than I have been in a long time. This is due in no small part to me taking some big, often scary, risks - the most recent of which is Class Act.

This course, which I nearly didn't apply for, has been a hugely validating experience, and has made me realise (finally!) that I need to re-evaluate my general sense of self-esteem and in particular my ideas about my own potential as a performer. The opportunity to work with such a lovely and talented bunch of fellow actors, under the tutelage of some incredibly inspiring industry professionals, is something I will remember and treasure forever. Our disabilities were carefully considered, of course, but because of that they were not the primary focus for once. That balance is an important one to strike, and I'll be taking the lessons I've learnt over these three days forward in my acting and all other aspects of my life (not least my PhD!).

So, as I'm being brave, and also rapidly approaching my twenty-sixth birthday, I thought I'd share some elements of my list of 'Thirty Things to Do Before I'm Thirty'. Many of the items on this list are general (and a lot of you will already know about them from conversations), such as the languages I am learning and want to learn. Some, however, are more idiosyncratic - and quite specific to life with CP. I've therefore chosen four for tonight, with varying degrees of effort/planning/exiting-of-comfort-zones required to attain or complete.

• Be comfortable enough to sit in a manual wheelchair again. I absolutely love my powered chair (whose name is Bunbury, in case anyone doesn't know) because zooming around gives me so much independence. I was never particularly skilled at pushing myself in a manual, because of my left hand, so I often went in circles. That said, nifty little manual chairs make some elements of life significantly easier, even if I do need to be pushed...and I want to have that flexibility again.
• Be comfortable to enough to fly again. I suppose this is a natural follow on from the manual chair. I realise that flying is bad for the environment. This has helped assuage my sadness about not being able to do it. However, having family and friends in South Africa and Canada means that they have had to come to me, and I want to return the favour. I also miss the sunshine and the snow.
• Have at least one professional acting job. This is probably fairly self-explanatory. However, it has only officially made the list (which was unfinished) this week, because before Class Act I wasn't brave enough to put it there. Not that it wasn't an aim, I just didn't think it was realistic enough to put there solidly, despite all my training and efforts. Now I do.
• Be emotionally and physically ready for a relationship. This is the scariest and least comfortable of them all. I have dithered about including it (not on the list, but online, not least because I'm all too aware it can't be planned). Hence the very specific wording. This post is about being brave, though, and this week has been filled with reminders to break down the barriers set up - by ourselves and by society. I have plenty of barriers on this score and, whilst a fair few arise from internalising social perceptions of disability, just as many arise from myself. I know these are valid and understandable responses, but I also know that if I want a partner (which I do) I need to sort myself out. Which I am. Gradually. CP and all. Starting by getting my feet more firmly on the ground (or rather footplates).

 

Happy World CP Day 2017!

#WordyandWheelyWednesdays: On Having Hands to Hold

Hello my lovely readers

This week's #WordyandWheelyWednesdays entry is a return to usual service because, although I'm still grafting away with uni work, the topic is incredibly relevant to my own research. 

Last night Mama, Gramma and I went to the Globe for an event titled Against Prejudice, in celebration of Ira Aldridge. Aldridge came over to the UK from America in 1824, aged just seventeen, and soon became the first black actor to play Othello. He then went on to take over the management of what is now the Belgrade Theatre in Coventry.

This is where last night comes in. The event was comprised of a rehearsed reading of a short play written by Professor Tony Howard of the University of Warwick (one of my undergraduate tutors and an all-round awesome human), followed by a thought-provoking panel. Each panel member had a different perspective on, and connection to, Aldridge (ranging from historical to practical to personal) but all were united in their desire to give Aldridge the continued and lasting recognition he deserves. 

It is the essence of these diverse yet united perspectives (both from the panellists and from the play's cast and creative team) which forms the substance of my post today. For the underlying message (whether portrayed through Shakespeare, traditional song, or news snippets from Aldridge's time which showed the significance of his success) was one of heritage and community, coupled with a sense of incredulity. This latter emotion arose from two sources - either related to the personal joy of finding him for the first time but wondering how people had not known before, or from the more general feeling that this knowledge (even now) remains fairly niche and that, consequently, each 'new' discussion is treated as a revelation by the wider theatrical establishment. Such a paradox was referred to as the 'ten-year-cycle of rediscovery', and the abiding consensus was in making concerted efforts to ensure that the cycle is broken; of which last night's event was just one of many ongoing.

For me (as I'm sure for many other audience members), this sentiment was encapsulated in the presence of Earl Cameron, a veteran centenarian actor who took voice lessons from Aldridge's daughter, Amanda. Not only did he wow everyone with an impromptu rendition of Othello's final speech (I still have goosebumps thinking about it as I type) but he led Tony to say what an honour it was 'to hold the hand, that held the hand, that Ira Aldridge held'. Of course this was a very emotive and poignant literal statement, but it also struck me as an extremely useful metaphor for the impact of authentic, representative and diverse casting practices, hence the title of this post.

Through witnessing themselves represented, people have hands to hold, and can use those hands to reach a position from where they can then be hands to help others in future years. Such was the power of having members of the Belgrade's Black Youth Theatre in the cast, and this is where my own research and practice fits in. Whilst I am forever conscious of the privilege afforded to me by my whiteness and my educational achievements, as a wheelchair-using actor and aspiring academic, I am also acutely aware that I, too, have very few generations of former practitioners' hands to hold. (I certainly could not stand on their shoulders - I think my wheels might be a tad uncomfortable!) I long to find some, as Virginia Woolf did in A Room of One's Own, and I share the sense of delight exhibited by the panellists yesterday when I do. (Oh, the rapture when I discovered Samuel Foote, the eighteenth-century amputee actor and comic!) More than that, though, I want to be part of making change so that someone else might feel that they could use my hand if they need it.

This is why figures like Aldridge need not just to be celebrated but to be talked, and taught, about - continuously, and as a matter of course, embedded into our curricula at every level. Their stories impact everyone in society by changing the dominant narratives, providing the kind of knowledge which gives much-needed hands to hold, and could go a long way to making Aldridge's fabled 'land of freedom' a lived reality.

#WordyandWheelyWednesdays: From Athletics to Academia

Hello my lovely readers

Tonight's #WordyandWheelyWednesdays entry is significantly shorter (and probably considerably less exciting) than last week's. The reason for that is, simply, my efforts since my walk have been concentrated more on my thesis than anything else. Partly because I needed to rest my legs, but mostly as a consequence of interview participants being back from summer commitments like Edinburgh and therefore available for sessions.

I also have things due for the beginning of term and, whilst I have been trundling away on these for most of the 'holiday', a useful boon of having my dear grandparents here is that Gramma is an exemplary touch typist. As someone who types solely (and slowly!) with the index finger of my right hand, this is a massive help. Of course I have my dictation software, but even that gets tiring when composing long documents.

So, Gramma to the rescue, and our current project is polishing off my 'Emerging Themes' section, as evinced by the picture below:

The equivalent of my childhood obsession with WordArt - not reflective of the actual document.

This is preliminary analysis of the interview data I have collected so far.

As a consequence, I find myself back in a place of very few words, albeit with a rather different landscape.

I hope that's okay.

Love until next week

Jx

#WordyandWheelyWednesdays: Wordy and Walky (for once!)

Hello my lovely readers!

As you may have guessed from the terrible pun in the title, this week's #WordyandWheelyWednesdays entry is (as promised) about my 100m walk at Parallel London on Sunday...and the somewhat longer than expected road to get there.

I should warn you from the outset I'm going to be a bit of a meany and keep you on tenterhooks until the end, nominally on the basis that the writer in me knows it's important to build up atmosphere rather than letting everything out in one go, but actually because it felt quite hairy at moments over the weekend and I want to share a bit of my anxiety about whether I would actually manage to do it. (That said, if you're Facebook friends with me or any of my immediate family members, you will have done well not to know what happened already, because our combined postings have been, well, prolific. And since most of the readers of this blog are people I know IRL [in real life] this whole suspense thing is probably redundant. Still. It wouldn't be me if it I weren't being writerly and pretentious, would it, eh!?)

So, I'll start off with Friday, the day the walker was meant to be delivered. Note here, if you haven't already, my use of the phrase 'meant to be'. That in itself was cutting it fine, because I wanted to get in at least one jaunt with the actual apparatus as practice, but it would just about be doable. On Friday morning, though, we received a text to say that it had been stuck at a depot and  wouldn't be arriving until Monday - the day after the walk! Cue major internal panic, outwardly characterised as calm telephone calls that put emphasis on the fact I would be doing the event for charity. Eventually, with help from the lovely rep and engineer Simon (who features in my video of the trial from my 'First Steps' post), delivery was verbally rearranged for Saturday, before 10.30am. Yay!

Well, 10.30 arrived, but the walker hadn't. We then got another text informing us it would be with us between 12.45 and 1.45pm. Phew! Concrete, written information - and at 1.15, the doorbell rang, bringing with it a box that caused much intrigue for my beloved dogs! So far, so relieved...then we opened it to discover many individual pieces and an intruction manual with an array of pictures confusing enough to rival IKEA. We knew we'd have to do some assembly, just not quite that much, and obviously I couldn't provide physical assistance. I could, though, help by calling out the different stages of the building process. 

Once we had got the wheels on, we phoned Simon to get his advice on the next bits, which involved regulating the height of the walker so it was suitable for me to use. This proved to be more difficult than anticipated, and at one point I had the support that was supposed to be around my pelvis at a rather higher point, which caused not insignificant discomfort. As a result, I couldn't get enough height to be able to walk at all, never mind effectively enough to complete a 100m event. 

By now, we were all exhausted from the culmination of building, unsuccessful trials and jetlag (on the part of my grandparents, who had flown over from Canada to support me and arrived that morning!). We therefore decided to go to bed, in the hopes that a good night's sleep would offer fresh perspective the next day. I was more than a little despondent, and concerned that it had to be left this late, but as we were putting on pyjamas I had a few memories from the trial. I wondered if we should set the frame lower to start off with, and only raise it once I was strapped in and secure. 

We tried that in the morning and it worked - so we were set to go! We headed off to our local station to catch the Overground to the Olympic Park at Stratford, helped by the wonderful access assistants to get on and off the train. Then, following a bit of palaver with lifts (as per in disability life!), we got onto an accessible shuttle bus. 

In the Park at last, I allowed my excitement to begin to build, not least because we were greeted by many friends and supporters - the biggest surprise of these being my Year 3 teacher, who had read about my mission in the local paper, and with whom it was great to be reunited after seventeen years.

Then it was time to get ready for the event, which involved not just getting into my walker but working out where to leave my chair so I could easily transfer again afterwards. However, although I was glad we had sorted that out, I don't think I would have minded too much if I had had to stay in my walker because I felt so safe and comfortable. This was great, as we had a warm up to contend with as well as the walk itself!

Now comes the moment you've all been waiting for - I did it, with my stalwart support team by my side. That of course is fantastic on its own, but even more exciting is that I somehow managed to complete the whole thing in just 9mins 16secs! This was far beyond the scope of possibility based on my times in training, but I think the speed came from a combination of adrenaline, the helpful downward slope at points along the route, and the inspiration of being surrounded by people who were similarly pushing themselves to their own limits.

Here I will stop with the words and provide you with some pictures, because they can tell the story far better than I. To end, I'd just like to express my gratitude again for all the support along this journey, and recentre the two very important causes at its heart. Starlight Children's Foundation, for whom we have managed to raise over £700, and the memory of my fifteen special people - Gemma, Tina, Erica, Jane, Pop, Lauren, Zahrah, Victor, Vicky, Eva, Levi, Tracey, Shane, Jackie and Helen. To have been able to honour them in this way means so very much, and I am once again reminded that they are always by my side. Thank goodness - because, now I have my walker, I'm going to be pushing even further. Hopefully I will continue to do them - and all of you! - proud.

Love and gratitude until next week,

Jx

 

 

 

 

 

Standing ready to go!

Yay!

 

Three generations of the Chambers Clan (plus JoJo!)

#WordyandWheelyWednesdays: On Woodland Wonder

Hello my lovely readers!

Here is this week's second post, and the #WordyandWheelyWednesdays entry, about my week camping with my fellow Pathfinders at the wonderful Woodlarks. However, it'll be more photographic than wordy, as it's been a long day (few days, since I've got home) and I'm tired tonight. I mentioned in Monday's post that I had been nervous about going because I'd been ill, but that all my doubts were, if not entirely unfounded, certainly swept away by the end of the week.

This was made possible by a number of things, some seemingly small on the surface but actually very big, others that I had built up in my head but which turned out to be much smaller than suspected.

Firstly, my trusty waist strap, which I'd stopped using at home. It came in very useful in combatting the extra challenge of the combined forces of gravity and very steep hills.

Secondly, our lovely leader Sam, to whom I also dedicated part of Monday's post. Not only did she do wonderfully for her first year at the forefront of everything (generally) but she specifically helped me with the reminder that my spasmy side (from the gravity and hills combo) would thank me, and most likely calm down, if I got a couple of good nights' sleep indoors. She was right - and I think the rest of my patrol would probably agree, because they were saved from being kept up when I needed to turn on to my back. Sam also gave me the very generous gift of a heart-shaped worry stone, which has already had a lot of use and is hugely appreciated.

Thirdly, our daily moment for interfaith worship, which is known as Time Out in the Trees. I led the thoughtful session on Tuesday and (as well as offering my own silent, private thanks for the recovery of most of my stability) I talked of the cloudy sky and how I hoped there would be sunshine later - but also how the green trees against the grey had their own beauty. I remarked that the weather had helpfully coincided with my metaphor about how camp helps me recentre myself even when things are tough; and then we were indeed blessed with beautiful sunshine in the evening.

Fourthly, thanks to taking some rest time earlier in the week, I felt physically stable and emotionally confident to go on the aerial runway - something, you may recall from another recent post, I hadn't done since 2010. Not only was it not as painful and scary as I had supposed it might be, it felt so freeing. No action shots this time, but one just before.

Content Note: small spaces

Fifthly, but in a similar vein, I went water zorbing! I had been absolutely terrified about this beforehad, but it was also great. Yes, I had to take up interesting positions, particularly getting in and out, and I didn't stay in for the full time because I got scared when other zorb balls bumped into me (I was on my back, and too light to move away from them myself, and apparently slightly more claustrophobic than I realised). But I was physically comfortable, and the feeling of being able to gaze up at the sky from my back (even for those few moments) was as close to unencumbered bliss as I've been in a while.

Sixthly, friends. We had a great patrol, and as always by the end of the week we were like a mini-family (albeit one with vastly differing ideas about suitable bedtimes - I'm getting old! - and whether or not ketchup is a good condiment). We had lots of fun, from taking far too long to light a fire for lunch to smashing down stereotypes whilst out bowling. The photo here is a few of us at the pub, in the garden, drinking wine to celebrate Levi's memory.

Seventhly, also friends, but of the canine variety. Chloe (one of my longest-held human friends) brought with her her assistance dog, Fleur. Sometimes, when everything is quiet, Chloe is kind enough to allow us cuddles - and I was very happy, especially in the absence of my two.

So I suppose my message for this week is that, although friends, fur, fun and fire (both the element and the soul strength) don't fix everything, they go along way to helping. Pathfinders is aptly named - it's always there, even when we think we might have lost our way. And I'm so very glad I didn't miss it this year.

Love til next week

Jx