#WordyandWheelyWednesdays: Dear Dogs

Hello my lovely readers

Tonight's post was going to be my ponderings on the National Theatre revival of Perestroika, Part Two of Angels in America, which I saw last night. However, I haven't quite finished processing the myriad of emotions it provoked in me, so that will arrive next week once I've wrestled my currently wordless and awestruck feelings into something coherent.

This week, instead, I offer you a photograph of me sitting out of my chair and cuddling my dear dogs. Now that I'm at home I can do this a lot more regularly (and it's a slightly less strenuous form of exercise for days when my body is tired) but the novelty still hasn't worn off - especially because it gets more comfortable each time.

So I hope you enjoy the affection on display in the picture below. It really is the perfect physio if it involves puppers, and these two canine cuddlies in particular.

Love until next week

Jx

#WordyandWheelyWednesdays: First Steps

Hello my lovely readers

Today's #WordyandWheelyWednesdays entry is a special one. Not only is it filled with exciting news and video evidence of my walker, it also (entirely coincidentally) is my hundredth post on this blog. I couldn't have asked for a more appropriate subject than the fitting for my Grillo frame. (I'm sure you can imagine how difficult it was for me not to make a pun in that sentence, so hopefully you'll appreciate my restraint.)

Before I wax lyrical about proceedings, though, I want to say a huge thank you to everyone who has supported our crowdfunding effort, both through donations and sharing. The overwhelming generosity and kindness of spirit has been such a motivator - and I'm thrilled to say not only have we met our target but the order has now been placed! Somewhat uncharacteristically, I don't have enough words to encapsulate my gratitude.

Hopefully the video at the bottom of this post will go some way to conveying it. Rather than bore you with a lengthy description of the fitting, which would probably be of interest to the physios, OTs or engineers amongst you, I thought I'd come up with three things I learnt during it. These things directly correlate to various points in the video.

1) Muscle memory is a real phenomenon. Although the first steps were incredibly difficult, each further one got easier, and I realised that, despite there being over a decade between this new venture in a walker and my last regular exercise in one, my body knew what to do once we got started. That was a huge relief.

2) I am nevertheless extremely unfit. As will be evident from my heavy breathing during the video, the fitting and trial was very hard work. I have never been one to shirk in other aspects my life, though, so I am determined now to apply that dedication to my physicality on land. Due to the 4-6 week shipping time required, I am not exactly sure when my own walker will arrive from Italy, so will continue training in my hoist until it does. The advantage of this delay is that walking in the hoist takes significantly more effort, so I am considering it the equivalent of hill training for a longer run or marathon.

3) Stability is everything for me. During the fitting, in order to get all the angles, heights etc into the most suitable position for me, I had to take up some rather interesting poses myself - including, at one point, pretty much kneeling on the floor. However, because I was securely fastened into the support harness, I felt completely safe and stable. (I mean that sincerely, not in the empty rhetorical sense of the phrase that is bandied around in politics these days.) This carried over into my walking, so much so that (had I had the energy) I would quite happily have attempted a little jog. 

On that note, I feel I should speed up slightly with this post, so without further ado (but with much love and gratitude) here is the video.

Jx

#WordyandWheelyWednesdays: On Allowing Myself a (Safe) Space

Hello my lovely readers

This week's entry may in many ways be considered a sequel to a post I wrote last year, prior to beginning the #WordyandWheelyWednesdays  series, about the personal significance and gratitude I ascribe to the Pride Parade in London. Consequently, I shall begin here with an emphasis on my extreme discomfort at several elements of the organisation and staging of this year's event, because I am a firm believer (both in my academic work and more widely) in acknowledging and addressing problems with something, no matter how much one might love it. This seems even more necessary given that many of my friends elected not to attend this year.

So these dodgy aspects include, but are not limited to: the heavy corporate influence, sponsors that are complicit in discrimination and violence against the very community they claim so loudly and proudly to support, the erasure of trans* and bi+ experiences from much of the publicity (perhaps epitomised by the controversial near-exclusion of bi+ groups from the march itself) and the slightly misguided and potentially offensive poster campaign. All alongside the recurring issues surrounding whitewashing (about which I firmly foreground my own white privilege).

With these caveats in place, though, in the rest of tonight's post I want once again to express my sincere attachment to the march, which was further solidified this year. I'll do that by describing some of my experiences on Saturday, which I was lucky enough to share with five wonderful friends.

The latter part of that sentence is perhaps the most crucial - as I wrote in a recent status on social media, for me, 'Pride offers the one platform for the expression of queer identity that is *guaranteed* to be accessible to me and my wheelchair as well as my non-wheely friends'. We can all be visible and present and disrupt the status quo (because Pride is a protest with party undertones, not the other way around, whatever the glitter might suggest). And we can do it together! You will therefore hopefully understand the excitement emanating from me in the photo below, taken before I'd even left the house or donned facepaint (though I did have my bi pride tshirt and flag, and rainbow shoes).

This joyful novelty of togetherness is facilitated by the provision within the parade of an 'access safe space' supported by a team of access stewards, and on Saturday I was thrilled to find that there were many more people wishing to join than there have been previously. Admittedly, six of us all arrived together, but it is still a hopeful sign of change.

The increased number of people led to a vastly different atmosphere. Everyone seemed somehow bolder, and we morphed from the tightly bunched and slightly nervous clump that I remembered into a wider-spaced group who were becoming conscious of our validity. This transformation was certainly aided by a fellow wheelchair user with a megaphone, who decided to engage the watching crowds with a chant of 'disabled people like to f***, just like all of you!). Whilst I may not have chosen those exact words, the sentiment behind them was enough to galvanise our group into nods of agreement. Moreover, the effect it had on the spectators' perceptions of us was palpable - suddenly we were on a level playing field with everyone else their asserting their rights to equality and equity.

If I noticed more people seeking out the 'access safe space' prior to the parade in order to march then, along the route, I noticed more young people (both with and without disabilities) watching - and especially more sporting either the bisexual or pansexual flags. A third quality of Pride I value, alongside its protest (paramount) and party (implicit) aspects, is that it may serve as a marker for future generations. I wrote about its impact on younger me in my post last year, and I think this element is all the more necessary as we observe the fiftieth anniversary of (partial) decriminalisation.

How far we have travelled and yet how far we still have to go - a sentiment which pretty much sums up my Pride experience last weekend. After the parade, we sat in Trafalgar Square and St James' Park, and revelled in the still-fresh novelty of people grinning across the paving stones or shouting 'Happy Pride' across the grass. We stayed like that for as long as train timetables and work commitments would allow, not wanting to break the spell and clinging on to the protection the day and the sunshine offered for the couple amongst our number. Then, when we eventually had to disperse, we did so feeling fortified by having been able to take up the space we deserve, together.

I carried this thought with me and, on the way home, I used it to bolster my confidence whilst dealing with a bus driver who didn't want to pull in and put the ramp down. I took my space, insisted I got on, and felt no small amount of pride whilst doing so. Character development or what!?

I ended my post last year with the hope that my five-year-old self would be proud. This year I'll finish with the hope that my twenty-four-year-old self would be even prouder. When she wrote that post, quaking in her boots as she did so, she had no idea of where we would be at twenty-five. I'm not sure I do properly know where we are myself - but I'm getting there, with (a lot of) help from my friends.

So thanks for being my friends, thanks to the fab five for a great Pride, and thanks to all of you for reading. I feel very lucky.

Love (and glitter, as in the picture just above, featuring my new friend Briony the Biceratops) until next week

Jx

 

#WordyandWheelyWednesdays: 'I Have No Secrets' review

Hello my lovely readers

Having said last week that I was finding my words easier whilst doing academic instead of personal writing, this week's post offers me the opportunity to merge the two, through a book review.

The book in question is I Have No Secrets, the debut Young Adult novel by Penny Joelson, whose website you can find here. It centres on (and is narrated in first-person by) Jemma, a fourteen-year-old girl who happens to have Cerebral Palsy and no independent mobility or speech. Since my PhD thesis is about the importance of disability representation (albeit in theatre) you can probably imagine my literal - and loud - squeal on first discovering this new novel and character. That squeal was one of both joy and relief. Joy for my wheely teenage self, but more so for the selves of my friends without speech, who had to search even harder than I did for characters like them. Relief for the teenage readers of today, whose searches can now be that little bit shorter.

Coming from twenty-five-year-old me, this might seem a tad extravagant to some. Surely I stopped reading YA literature years ago? That is true, and probably far quicker than my peers - but I did so for precisely the reason that I have been so excited by this book. There were just so few contemporary (wheelchair-using) characters I identified with in the early 2000s, and I consequently sought refuge in the work of earlier periods like The Secret Garden and Heidi, despite the problematic elements of their narratives. The only noteable exception came in the form of The Worry Website, written by (the genre's stalwart and beloved) Jacqueline Wilson, in which a character called Natasha used the joint website set up by her class at school to communicate her concern and disappointment at being left out of various (read here: most) things. Even then, though, because the book threads together multiple perspectives from each of the class members, Natasha wasn't developed as much as she could've been in a novel solely focused on her experiences.

That's where I Have No Secrets and Jemma arrive and, I'd argue, give to YA fiction what I said in December that Tom Fletcher's The Christmasaurus gave to younger readers. A well-rounded and relatable individual whose physical disability is a significant, but not the defining, aspect of their identity. Jemma's distinctive 'narrative voice' (a phrase which emphasises the speech-centric nature of discourses around even the written word) challenges the audience to confront the 'differences' of her reality alongside proof of her similarity, by giving equal importance to hospital appointments (happy birthday, NHS, and thank you!) and concert visits. 

This thread of sameness and difference, and the parallel considerations of absence and presence, is woven into every level of the novel's tapestry - and it is all the richer for these nuances and, the first (and perhaps most important) of which is evident in the title. Jemma indeed has 'no secrets', as she requires support with all personal care - and yet her lack of an adequate communication method means that everyone around her feels safe to share theirs. This paradox is the hinge for some crucial circumstances in the plot (which is gripping and enough of a recommendation to read it on its own). However, if you are interested in inclusion and equity, it also has wider implications, because it raises questions about the power we place behind 'speech' as a society - and who is considered capable (or worthy) of the privilege. I call it a privilege, because it is something the majority of people are lucky enough not to have to think about; but really, it's a right.

As Jemma herself puts it, thinking about a hydrotherapy session, sometimes those around her and her friends 'forget that we are people who need to be talked to as well'. I'd extend that to propose that the novel is a reminder that people with disabilities, and especially those without speech, deserve not only to be 'talked to', or even 'talked about', but to 'talk' for ourselves - in 'real life', of course, and now, at last in fiction.

So, on that note, I'm going to stop my own rambling, and end with gratitude to Penny Joelson for writing it and to all of you for reading it - because I'm sure you'll want to, if only to pre-empt my periodic nagging!

Love until next week

Jx