#WordyandWheelyWednesdays: Sonnets for my Sanity

Hello my dear readers and welcome to yet another #WordyandWheelyWednesdays post where I'm writing about something different from what I expected to be. (This seems to be becoming a habit!)

Those of you who know me 'in real life' will most likely be aware that I write poetry. Often, especially when I'm stressed or need a more structured emotional outlet, this poetry takes the form of sonnets. In an effort to honour the pledge I made in last week's post (but have been working on for some time) to be more celebratory of my difference, I have found myself writing them more regularly. Indeed, over the last little while, what I thought was a sporadic smattering of verses usually penned in breaks from PhD work has become a more substantial project. Still only in breaks from my PhD, mind you, but more than just the occasional verse.

These poems have allowed me time to reflect on my thesis, my body, and the way that these two things are inextricably intertwined yet also almost mutually destructive - and I've come to rely on their fourteen lines as a slice of sanity in a cake that can sometimes feel as if it's filled with nothing but confusion and chaos. So much so that I now have quite a few, and I plan to keep going.

I'm not quite sure where they'll all end up, but may publish some on here, if that would be of interest?

Let me know - for now, though, I'm just sending love and thanks to you all for putting up with my ponderings - and offering you the picture below, which is my desktop background, and represents my 'mind's eye'! Pretentious, moi!?

Copyright Jessi Parrott 2015-

  

#WordyandWheelyWednesdays: UKDHM 2016

Logo used with permission of UKDHM organisers

[Image description: The banner and logo for UK Disability History Month/UKDHM. On the left side of the image there is a black triangle which has a yellow circle inside it. The circle contains the words, 'UK Disability History Month', which are in black capitalised font. Stretching out across the page next to the logo, there is a yellow elongated rectangle, which functions as a banner. Inside this banner, to the immediate right of the logo, there are three bulleted statements, one underneath the other. These read as follows: 'Celebrating our Lives, Challenging Disablism, Achieving Equality', On the very right edge of the banner, there are the dates 22nd November-22nd December, which indicate the four weeks covered by UKDHM. Underneath the logo/banner is a caption to indicate that I have permission to use it from the organisers.]

(Content Warning for: brief discussion of disability oppression and discrimination/ableism, but this post is mostly proud and positive.)

Hello my dear readers!

This wasn't the post I had planned to write this week, as it was going to be about a research-related discovery, but then I remembered that I would be attending the launch event for UK Disability History Month (UKDHM) 2016 last night - so obviously I had to write about that!

UKDHM is a fairly recent iniative, although it has been a long time in the making. Started in 2010 by a group of veteran disability campaigners and activists, it aims to offer a chance to remember disability history, to discuss 'disability present' and to secure 'disability future(s)' in the UK and beyond. Now in its seventh year, it has taken the theme of 'Disability and Language', which revolves around an education pack about the impact of language in conversations about disability and the potential harm of slurs. This is a subject about which I feel very passionate (as those of you who know me will be well aware) so I was extremely excited to attend.

It was an absolutely lovely evening. Difficult at points, especially when discussions turned to the current policies of austerity and their accompanying attitudes, but mostly lovely. There were extremely interesting presentations, some hugely powerful poetry (including contributions from Maresa MacKeith, a radical poet who communicates without speech), and a deliciously provocative play by members of the theatre company Access All Areas. Of course it was also wonderful to catch up with friends, some of whom only manage to meet once a year but whom I hold very dear. (I've just realised that rhymes, which was completely unintentional but is rather apt!)

I found the issues around language absolutely fascinating - not least because of their complexity. What struck me most during the discussion was that there wasn't always a clear consensus on terminology. For instance, whilst the predominant phrasing in public policy (and therefore every day vocabulary) refers to us as 'people with disabilities', the preferred term for most of the presenters was 'disabled people'. The former is an example of 'person-first language', which asserts personhood aside from anything else. The latter is an example of 'identity-first' language which posits (surprisingly!) that community identity is paramount. It's also an integral aspect of the 'social' model of disability, which suggests that disability arises from social barriers. This was developed in response to the 'individual' model (now more usually referred to as the 'medical' model), which locates disability as a solely individual issue. 

Somewhat against the grain, I have always preferred the person-first approach, and term myself as a 'person with a disability'. I am very much in agreement with the social model, as there is absolutely no doubt about the social barriers my friends and I encounter on a daily basis but, especially in more recent years, I cannot help but be aware of the impact my body has on my abilities - both negatively and positively. So, for me, the best model is the (seemingly elusive) middle ground between the 'social' and 'individual' - and I find it personally easier to articulate that with the phrase 'person with a disability', especially because my being 'disabled' isn't the only aspect of my identity. I thought I was alone in this opinion but, having read my friend Sarah's thoughtful post after the event (read it here), it seems I'm not!

This isn't to say I won't ever feel comfortable reclaiming the word 'disabled'. After all, I used to hate the word 'cripple' and wouldn't have dreamt I'd now be using its shortened form, 'crip', as a badge of honour - but I am! Indeed, I think the concepts of honour and pride in relation to disability were my two most important takeaways from yesterday. In theory, of course, they were things I already knew. In practice, however, I don't think I've thus far been very good at expressing them - and definitely not in relation to myself!

Yesterday reminded me (exactly when I needed to be) that I am valuable and worthy just as I am. I remembered that I can celebrate my difference just as much as I celebrate others' - and that it is necessary for me to do so. So, over the next four weeks, I'm going to employ this little corner of the internet as an assistant for my personal project of self-acceptance. I'm not quite sure what form that will take just yet, but hopefully you'll follow along and we can find out together!

For now, much love, and Happy UKDHM!

Jxx

#WordyandWheelyWednesdays: Busy Bunny

Hello dear readers

Just a short, silly post tonight as this Parrott is very busy bunny with work...so here's a bunny for you, though it may be hard to spot:

 nn
(oo)
(uu)* 

(Normal service shall resume next week!)

Jx

#WordyandWheelyWednesdays: Worried but not Weary

(Content Warning for: discussions of bigotry, hatred and discrimination towards minority groups, both in our current era and historically, and the impact of politics)

My dear readers,

I must ask you to forgive me on two counts - the fact that I've missed two weeks of this series (due to a combination of ill health and a lot of work), and the fact that this week's update is a day late - but I'm still calling it #WordyandWheelyWednesdays since, well, it's about Wednesday.

Actually, I'm not going to apologise for its lateness, because a) it was my Mama's birthday and b) I needed to take some time to process what happened in global politics. As of yesterday, on the strength of a campaign that seemed more like a reality TV show than a bid for political office, Donald Trump is now the forty-fifth President Elect of America. Being a young bisexual woman and a wheelchair user, the fact that I just had to type that sentence terrifies me. I wept in the shower yesterday morning, despite trying desperately hard not to on account of Mama's birthday.

Why? You might ask. You're British and you live in the UK. Yes, so I didn't have a vote (and arguably anything that he enacts during his - hopefully only four-year - term won't have a direct effect on me), but that doesn't preclude me having concerns. 

I'm worried about my friends in America.

I'm worried for the couples who might lose their right to marry, as quickly as they (only recently) won it.

I'm worried for the women, female-identifying and non-binary people who might lose their right to safe bodily autonomy through access to legally-available contraceptives and terminations. 

I'm worried about the impact of the campaign's overtones of rape culture.

I'm worried for the people who may feel too unsafe to practise their religion(s), for fear of reprisal.

I'm worried for the people who might lose the access to health insurance that they were granted through the Affordable Care Act (otherwise known as ObamaCare) - especially those with pre-existing conditions deemed uninsurable by most companies.

I'm worried that, in the UK, our goverment chose this week (probably liking the cover of the US election) to announce changes to caps in the benefit system that will have a disproportionate effect on families and disabled people.

I'm worried that our Prime Minister did not mention or caution against any of the potential human rights issues of this presidency in her statement congratulating Trump.

I'm worried that people will consider this election as a justification for all kinds of hatred - racism, Islamaphobia, anti-Semitism, misogyny, homophobia, biphobia, transphobia, ableism, and every other sort of bigotry they could possibly invent.

I'm worried because the only other reference point I have for the scenes the media have captured at Trump's rallies are from the clips we watched in history lessons on Hitler - and from there, along with the more obvious minority groups, disabled people like me were forced to wear black triangles, rounded up for the purposes of medical experimentation and then killed in concentration camps (if, of course, we didn't die during the experiments). 

I'm worried that it could happen again.

Perhaps that last point seems a little drastic or farfetched to you. We've learnt many things since then! you might say - and largely I would agree with the sentiment. People in the 1930s thought Hitler's ambitions were drastic and farfetched, though - and, in 1948, the same year as the United Nations was formed with the aim of preventing similar atrocities, the Apartheid regime took power in South Africa.

That isn't to say I think it will happen again - the fact that the popular vote went to Hillary Clinton and that there has been such sadness and outrage at the result both in America and across the world shows that there are enough people and organisations who will work against the despicable rhetoric. Of course Clinton is far from perfect, especially in relation to foreign policy and military strategy - and the whole neoliberal project falls way short of being truly inclusive and intersectional. 

Yet this is where we (those of us in this world who believe in equality and equity) come in - and this is where I moved from worry to wakefulness. This election, particularly in combination with Brexit, has understandably filled many of us with difficult feelings that it is important to acknowledge - but it can also be taken as a reminder that reform is deeply necessary. If we can harness the surge of emotion and turn it into something useful instead of despairing, we can and will make change. 

A dear friend was recently in Brussels and sent me a photograph of a T-shirt she spotted in a shop window. The picture is a bit obscured due to the reflection, so I will include it below anyway, but also provide a description. It is red and has a drawing on it of a beautiful black woman with an afro - and underneath a quotation from the black activist Angela Y Davis: 'I am no longer accepting the things I cannot change. I am changing the things I cannot accept…'

I think we can all learn a lot from this philosophy. It is essentially at the heart of my thesis, but it is all very well writing about things in theory. The USA and the UK are both democracies so we cannot necessarily change the way that the recent votes have fallen, but it does not mean that we have to accept the language and atmosphere of bigotry and intolerance. Therefore we must act, in ways seemingly small as well as big, because if we do not it is tantamount to approbation of this negativity - which is almost worse.

So, in the spirit of salvaging something from the sewerage of 2016, I am grateful that I have family, friends and colleagues who I know will read this ramble and join with me to do things differently, not just in relation to our research, but in real terms. Anger and optimism could be a powerful combination - let's try it out!

For now, I love you all. Thank you for being in my life. 

#WordyandWheelyWednesdays: Fever Pitch

Hello, my lovely readers.

Just a quick note today to say that, as I have a fever, this week's post is postponed...hopefully just until tomorrow. I'm sorry about that, and I didn't want to miss an upload, so I thought I should write this before snuggling up again.

Much love

Jx

#WordyandWheelyWednesdays: On the importance of community

Hello, my dear readers, and welcome to the second instalment of #WordyandWheelyWednesdays! (I must confess that, in the absence of regular internet access, this one has been sneakily written as a Word document over Monday and Tuesday evenings and just scheduled to upload today – but that’s how I’m making the weekly posting work well, so hopefully you’ll forgive me!)

Following last week’s post for World Cerebral Palsy Day 2016, which I wrote as a sort of bullet-pointed ode to my disability and some of the many things I’ve learnt from it, I’ve been thinking a lot about that teaching – particularly in relation to my point on the importance of friendship. More broadly, now that I’m not trying to fit it into a concise bullet point, that can be expanded to a sense of belonging and community. So, for this week’s post, I thought I’d write about something I’m involved in at the moment that epitomises their importance – Warwick Enable.

Warwick Enable is the Students’ Union disability liberation society. It brings together disabled students/students with disabilities (more on terminology in another post), our friends, carers, PAs, enablers and allies to socialise and to work towards making campus more inclusive and accessible. We are open to everyone who cares about disability as a social justice issue. I say ‘we’, here, because I’ve been given the great honour of being President for this academic year – which brings me back to the ideas of community and belonging. On Thursday last week, I returned to the Societies Fair, this time to promote Enable to the new cohort of Freshers (of which I knew there would be a fair few, thanks to social media). I was joined by the wonderful people who make up the rest of the Exec – Katie, the Campaigns Officer; Sara, the Social Secretary and current Marketing whizz; and Rob, the Treasurer. They are excellent humans, all very lovely and just as passionate about Enable being considered on an equal level with the other liberation societies who (this year) we were granted a stall beside. We are still fairly small in comparison, so the aim is very much to grow, in order to create a stable base from which to offer a safe space for support and a forum for advocacy and change. We have lots of plans for campaigns! As a result, if anyone showed interest, we were delighted – and we have some wonderful new members from across the university (both with and without disabilities) who are raring to go.

Often, however, the interest came by way of the following question: ‘So, you’re a charity project fundraising to help disabled people, right?’, and then, when we gently said ‘We actually campaign about disability issues on campus, so if that’s something you’d be keen on –’, they left before we could finish the sentence. Now, fundraising is extremely important, and it’s something I myself have benefitted from through a number of different (and fabulous!) organisations. What struck us, though, was the assumption that that is what Warwick Enable does. People noticed that we were about disability and immediately equated that with ‘charity’ and ‘needing help’. It really brought home to us that (even in the twenty-first century, even among our generation) disability isn’t usually interpreted as relating to human rights, social justice issues and equal permission to belong, but rather as something ‘lacking’, requiring ‘help’, ‘pity’ and even cure. I am very much aware of this trend through all of the reading I do for my thesis (more on the various ‘models of disability’ in a future post), and from personal experiences with random strangers on the street, but to have it repeatedly displayed within the context of a Societies Fair during which we were very much linked to the other liberation groups was both intriguing and actually rather horrifying.

I guess it showed us just how much work we and Warwick Enable have to do to educate and mobilise the student body – every body. On that note, I’d better sign off and get back to it, because that’s essentially the point of my thesis!

Until next week, then, with much Wordy and Wheely love x

#WordyandWheelyWednesdays: World Cerebral Palsy Day 2016

Hello my dear readers! Yes, I am still here. I realise it's been an extremely long time since I last posted (for a combination of work- and life-related reasons, some of which will become clear at a later point.) I'm very pleased to tell you, however, that these long breaks are a thing of the past - mostly due to my desire, and practical need, to have a regular documentation of my PhD process that is slightly more in depth than the few words I scribble in my journal or save as draft texts on my phone.

Welcome, therefore, to the first of what I'll be calling #WordyandWheelyWednesday posts, a weekly write-up of my thoughts on anything I have found particularly striking or useful with regards to my body, the copious amounts of books I read, and the thing that brings them both together, my thesis on disability casting. I hope you'll read and enjoy these - I'd very much welcome suggestions on anything you think I should cover.

It was always my plan to start this project this week, because it's the beginning of the academic year, but today has turned out to be even more apt than I could have wished. Not only was it my first day back on campus, a chance to be reunited with friends whilst helping out with the Opera Warwick stall at Societies Fair and promoting our new community outreach programme (more on that later, probably next week), but it is also World Cerebral Palsy Day 2016! I knew it was soon, as it's always the first Wednesday in October, but I didn't click that it was today until my fabulous mother mentioned it and I had a chance to check Twitter this evening.

So, for the first post in this series, I'd like to pay homage to my CP. It might seem strange that I would use those words of reverence about a condition to which I have been known variously to refer to as my 'Terrible Palsy', 'Lousy Palsy', 'Chronic Partner' (and other things that perhaps aren't appropriate for this blog). Nevertheless, most of these are actually terms of endearment, and, for all the frustrations, my life wouldn't be what it is - I wouldn't be who I am! - if I didn't have my bodily (and brain-ly) buddy. Whilst it's part of my plan in the future to use these entries to discuss the difficulties with honesty, because I'm realising as I write my thesis that this is one of the gaps in theory, I have the rest of the year to fill with that. It seems only fitting to try and express my gratitude today, on the day designated for my disability, since I've been doing things I would never have dreamed of without it.

Thanks to my CP, then, for: 

• Showing me that there is more than one way (literally!) to navigate this world
• Teaching me (sometimes through tears) about the transience of life, and how important it is to laugh in the face of it and embrace every moment
• Educating me early on the vital value of fast friendship - you know someone's worth hanging onto if they put a colander on your head and jump on the back of your chair because they've 'always wanted to ride a Dalek'
• Proving that a wheelchair makes a perfect poster prop and provides a very adequate alternative to a sandwich board
• Coaxing me to be comfortable with (non-)conformity 
• Bullying me (often beligerently) into believing that my body is worth taking care of and nurturing

On that note, I need to listen to that bully and go to bed, because I have another busy day tomorrow. So thanks, body, for that reminder - I love you, even when you're lousy.

Thanks and love to all of you, too, for reading this - but, more than that, for being next to me in my novel navigation when I have needed you most. It means more than I think you know. 

Until next week and another #WordyandWheelyWednesday - happy World Cerebral Palsy Day!