#WordyandWheelyWednesdays: Vicky Angel

Hello my lovely readers

Today's #WordyandWheelyWednesdays post is rather different from last week's, because, where last week concerned an expression of love for myself, this week concerns an expression of love for my dear friend Vicky. She would have been 26 today. 

When I first read Jacqueline Wilson's book Vicky Angel at primary school, I never thought that I would have one of my own, nor indeed angels named after all the other people I have lost. Grief, especially grief around losing friends, is not something we are comfortable discussing in society; preferring not to talk about it unless we absolutely have to, and often not considering it until it touches us. As I have learnt throughout life with my disability, though, it is far more present an emotion than most people realise - and it is something that only talking can help us work through and deal with. 

That is why, since primary school, I have held onto Wilson's book with all of my heart - because it showed me that both grief, and my responses to it, are valid and important. Crucially, it taught me that one of the best ways to process things is to remember that you carry your special people with you always, even if you can't see them; and that it is both natural and acceptable for happy memories and sadness at their absence to co-exist.

This is how I feel today, on Vicky's birthday, because I am wishing we could be together to celebrate it, whilst simultaneously feeling extremely grateful that I got to have her in my life at all. We had so much fun, writing stories and sharing secrets, and I can't help but feel sad that we aren't still doing that now. Then I am reminded of her cheeky grin and the way she could make me laugh when I was homesick or stressing about work, and I know she wouldn't want me to dwell too much on her not being here, but rather to head out and make the most of life - just as she always did.

So, tonight, I'll be watching a play about another community who are well-versed in loss, living at the height of the AIDS crisis in the 1980s. It is called Angels in America, and it celebrates life and love, without shying away from the difficulties. As I watch, I'll think of my own angel, honour her life and wish her the happiest of birthdays.

Love you always, darling girl xxx

#WordyandWheelyWednesdays: On Self-Love and Subversion

Hello my lovely readers!

Today's #WordyandWheelyWednesdays entry is more in line with my usual postings, in that it's about happenings in my life, but they are nevertheless more abstract changes than specific events. Hopefully it'll make sense and you'll stick with me.

Most people who read this blog (whether you know me 'in real life' or not) are probably aware that I've struggled with body image for a long time now. This has a number of causes, but the most prominent one has been my spinal curvature, and the fact that it makes various aspects of my body 'not look like it should'. As a result, I find it very difficult to see myself in mirrors (even if it's just a glimpse), and I usually hide as much as I can underneath bulky hoodies - accompanied by my ever-present blanket - to try and be as inconspicuous as possible.

So far, so Jessi - and yet, so hypocritical, because it's exactly the opposite of the advice I give to my dearest friends. This is something I've only realised very recently, despite well-meaning and sincere people (both friends and family) trying to get it across to me for years.

What changed, then? I was having a conversation with a friend and she observed how other people necessarily take ownership of my body, for instance in the swimming pool or when doing personal care, so no wonder I feel distanced from it. For me, my body is not something I have autonomy over, but something that has stuff done to it. Moreover, the societal narratives about beauty do not fit with my physical configuration - and that is the key. Historically, bodies with disabilities have been devalued in order to place their occupants under coercive control; it is a lot easier to render someone passive if they feel unworthy.

From this, finally, after years of activism for other people, I have found the answer for myself - hence the title of this week's post. In such circumstances, the expression of self-love alongside disability is a highly subversive act. In the current political climate, it seems especially important to reject dominant oppressive discourses and, if I'm doing it in all other aspects of my life, I had better apply it to my body as well.

So, in an effort to begin and aided by the combination of being at home and warmer weather, over the weekend I decided to try out wearing plaid shirts and plaits again. It worked and was comfortable. I felt like myself again; so much so that I was brave enough to change my profile picture on social media.

This is not to say that things will shift overnight (far from it) and neither is it to suggest that I wasn't happy with the way I dressed before. I love my hoodies and am extremely proud of the collection I have accrued - and comfort (both physical and emotional) will always be my priority. There will be days when I don't have enough spoons to think about dressing in a particular way. And that is perfectly fine.

Because that is what's different - I know I am perfectly fine. Intrinsically. I also know I won't always feel that way, which is equally perfectly fine.

It's just nice to have made a start.

On that note, love (yourselves) until next week.

Jx

#WordyandWheelyWednesdays: Fast

Hello my lovely readers!

The title of tonight's entry is 'fast', and that's what this post will be, partly because I'm having a rather busy time at home so am cramming this between other things. However, it's also because there has been so much happening, both physically and academically, that I keep thinking 'ooh, this would make a good update!' only for it to be swept away on a tide of other exciting events or epiphanies.

That's not to say I'm not keeping track - it's merely an acknowledgement that they will probably always be of greater significance to me than to any of you. It's also not to say I won't be sharing things, but rather that I want to be a little more circumspect in what I do share. I have a tendency to get very excited about 'small' things, because, to me (in my wordy, wheely world) the delights are in the details. Nevertheless, I am aware that my physical particularities mean that things which feel huge to me may seem minute to others. Moreover, I know that the more time I spend writing about things that occur, the more likely I am to miss something occurring.

Writing is my lifeline (and livelihood!) and I shall continue it forever, if I am gifted that possibility. For a variety of reasons, though, in recent weeks (both now I am at home and beforehand, towards the end of term) I have been reminded of the joy to be found in actively participating as well as observing, and I am keen to expand on that experience.

So, with that in mind (and in the hopes that this little waffle has even made vague sense), I shall wish you love until next week.

Jx

#WordyandWheelyWednesdays: A Week Off

Hello my lovely readers!

Content Note for the incident in Westminster

Today's #WordyandWheelyWednesdays entry is just a little note to say I'm taking a week off from proper posting to spend time with family and cuddle my dogs. 

There has been an incident in Westminster this afternoon and, whilst I know that no single event is more or less worthy of thought than another (after all, things like this happen in the Middle East with regularity, and the reporting leaves much to be desired), I've found that it being in London (my home city) has triggered quite a few emotions for me - because, the last time something similar happened, I was a teenager at boarding school and desperately trying to contact my loved ones over telephone networks that were jammed with the sheer volume of traffic.

I also don't think, in the circumstances, anyone will particularly relish a self-indulgent rambling update on my academic and physical progress.

Love until next week, then, and to my London friends - please be sensible and stay safe.

Jx

#WordyandWheelyWednesdays: A Wordy Whim

Hello my lovely readers!

Tonight's #WordyandWheelyWednesdays entry is something a little different from my usual posts, although it does combine both the Wordy and Wheely elements of this blog and my personality.

Anyone who spends even just a little amount of time with me will probably glean that I love poetry - reading, but especially writing, it. Actually, even if you go just a few posts back, you can verify that for yourself. You'll probably also be aware that this hobby, alongside my PhD, means that I spend quite a bit of time on a screen, just as I am now, to write this post.

So, in an effort to remedy this a little, I've been on the hunt for some years now for an alternative piece of technology - because, though I can write well with a pen or a pencil, and enjoy it very much, it gets tiring.

Imagine my delight, then, when a lovely little vintage shop in Leamington (Berylune, self-termed 'a pint-sized department store') advertised a typewriter. The independent company have been open since 2012, when I was in second year, and I've followed them ever since in the hopes of getting my very own portable gem. As of last Wednesday, that dream came true, and I couldn't be happier - because not only is it perfect, it's fab for physio!

Here's to typing...and to my fully-fledged hipster transformation! Hehe. Huge thanks to Berylune and love to all of you until next week!

Jx

 

#WordyandWheelyWednesdays: Working Woman

Hello my lovely readers!

As today is International Women's Day, I had planned to write a post about that - especially due to the labour-focused element of the day's origins in the Garment Workers' march, because my thesis currently has me immersed in issues surrounding disability and employment. These are particularly pertinent to remember in the context of recent suggestions by MPs that it should be acceptable for workers with disability to be paid less than the minimum wage, supposedly to increase our possibility of employment and allow us 'the dignity of work'.

Ironically, though, I haven't had the time to write that post because I've been too busy with work, of various different kinds. So I want instead to express my gratitude for the people who have made it possible for me to do that, from the previous generations of women and non-binary people with disabilities who fought (and still fight) for employment equality; to the wonderful PAs that I have; and the two women with whom I've been lucky enough to spend most of this week - my inspirational mother and maternal grandmother.

Also, a reminder that feminism is about equality - and International Men's Day is 19th November.

Love until I return properly next week.

Jx

#WordyandWheelyWednesdays: Dear Fifteen-Year-Old Me

Hello my lovely readers!

Today's #WordyandWheelyWednesdays entry is a narrative poem for Eating Disorders Awareness Week.

A Content Note for those not here from social media: food, eating, eating disorders, PTSD, abuse

The inspiration was found in the survival instincts of a precariously-placed daffodil, by my car door (picture below). The courage to post it was found through a friend's brave example on Monday night. I've not written about most of this online before, so if you're still reading, thanks - it means a lot. Also, if you're in the UK and you or someone you know needs help, visit https://www.b-eat.co.uk/

Dear Fifteen-Year-Old Me

I’m writing this from twenty-five

to tell you certainly,

a decade on, we’re still alive –

and fin’lly feeling free.

The metre marks the wheel tracks

we’ve left, trundling along,

to let you know I’ve got your back

and am singing out our song.

I’m sending you the strength to cope

with everything at school –

a beam across the years, in hope

you’ll feel less ‘a fool’.

To clarify, for lifts and things,

you NEVER were too heavy!

Our standing is a gift we bring;

our legs are strong and steady.

I know she told you otherwise,

to keep you in your place,

but the real issue with your size?

You took too little space.

I know you hoped, by cutting food,

that you would disappear –

the only way you thought you could

escape the pain and fear.

So, gradually, your portions

got more and more controlled –

unlike your raw emotions,

which our body had to hold.

Then he decided you could be

his brand new protégée

and promised disability

did not scare him away.

He led you on, the others too,

he made you feel safe

and then he ripped that trust in two,

and threw it in your face.

He leveraged his authority,

used it for his own tack –

so, as a matter of fact, did she,

not thinking of its impact.

But let me now remind you,

they pounced upon your panic,

and there was nothing you could do

to alter that dynamic.

Of course you wanted to be small,

and keep yourself well-hid;

‘cause the crucial point about it all

was that we were just a kid.

Yet we have travelled far, since then,

and so much time has passed,

that I can tell you, soon, again

we’ll love our self at last.

It’s taken all the years between

to get us to this point,

for the pain that started as a teen

was nestled in our joints.

It took the place of spoken words

you could not shout aloud

in knowledge that you’d not be heard

beyond the secret shroud.

But now we’ve had the chance to talk,

about what’s in our chest,

we’re shedding the traumatic chalk

for some much-needed rest.

We still have many miles to go,

and several hills to climb,

but now I let our body know

that anxiety is fine

and so no longer is it stuck

in physicality,

but we can wade through all the muck

to find ability.

Though I still battle demons

at meals every day

there are now many reasons

that tell me we should stay.

I don’t know where we’ll zoom to next,

but I’m glad our paths once crossed,

and I promise to try and protect

us both from further cost.