Worthy and Wheely?

Prosaic and poetic ponderings on autonomy, identity and Adult Social Care

Hullo my lovely readers

A content note for reference to structural, systemic ableism and disableism, and other marginalisations related to sexuality and gender identity, as well as how these interact in the context of personal care assessments

I must start with a confession that, after over eighty weeks of publishing Wordy and Wheely consistently, I wasn’t sure I’d manage this week.

This wasn’t the letter I planned to share this week, either.

But it’s the one I need to share.

Since the beginning of this newsletter, I have written about my pride in being disabled and neurodivergent, and queer and trans.

I have also written about being all of those together.

And how much representation, in myriad forms, matters.

Touching on the joys and the pains.

In amongst all that, I have been careful to articulate my privileges and my gratitude for the support systems (formal and informal) I have through living somewhere with an infrastructure that is nominally set up to provide the health and social care I need in order to live and work.

Before I continue, from a cultural context perspective as a third culture kid, I want to be clear that I remain acutely aware of those privileges.

I also remain resolutely proud of all aspects of my identity and experience.

However, I promised this year to recommit to representing (and re-presenting) my personal and professional realities.

And, due to complex trauma related to my care, it is one area where I find all my activism and advocacy for others nigh on impossible to apply to myself.

To feel worthy and wheely.

Or “simply” to feel safe.

That means, like many other disabled LGBTQIA+ people who use self-directed budgets to employ Personal Assistants (as was shown in a study I participated in in 2017 [PDF]), I’m not “out” to social workers¹.

And this week, amidst an otherwise intense time for my family, I had an unexpected review of my needs and my Adult Social Care budget.

The essence of this meeting was, as it has been many times before, that getting the level of funding for the twenty-four hour care I need (and, crucially, have long been assessed and acknowledged as needing) will require application to NHS sources instead of Adult Social Care.

Processes I have already been through and appealed, and ultimately deemed ineligible for, despite compiling copious evidence of my health needs.

I am far from alone in this particular funding situation.

So much so that, if I had the wherewithal this week, I might have felt able to put this letter as part of my “Worky and Wheely” series.

I’d frame it more fully with the report from the research I conducted with my colleague and friend Jamie Hale, into the employment experiences of performers with high physical accessibility requirements, Always the Audience (Never the Star).

And I will do that, properly, at some point – but care isn’t just a professional consideration.

It’s a personal one.

For personal assistance by Personal Assistants.

I’m fortunate to have a lovely, supportive team of PAs, and many other brilliant people around me in the form of friends and family.

But they can’t – I can’t – currently cover everything I need.

And, because this review meeting has happened in Pride Month, I’m even more conscious than usual of how my access to care additionally impacts whether I can live, and love, how and who I want.

And I’m thinking of my elders across my communities.

Within the current care system, my circumstances mean that, like so many queer and trans people (both disabled and non-disabled) throughout history and around the world, I still can’t marry, or even share a home with, a partner.²

So, today, on personal rather than professional levels, I want to share two startlingly relevant pieces Jamie has recently written, on crip fury and crip grief.

I’m also compelled to share a poem: perhaps one of the most vulnerable I’ve written.

Worthy and Wheely

Please may I get out of bed?
Please may I go to the loo?
Please may I eat some food?
Please may I do some work?
Please may I live a life?
Please may I have a love?

Please may I be both worthy and wheely?

[Image credit: Jessi Parrott. Image description: A collage of two drawings by Jessi on the virtual blank canvas of WeaveSilk.com. In the left pane, in the centre of the frame, on a black background, streaks of green light represent the shape of the seat and one wheel of a wheelchair. In the right pane, on a black background, streaks of light represent an abstract take on the colours and shapes of the Intersex Inclusive Progress Pride Flag: a yellow triangle / chevron with a purple circle for the Intersex flag; thinner white, baby pink and baby blue chevrons / triangles for the Trans flag; brown and black chevrons / triangles for queer and trans people experiencing racism; followed by the horizontal rainbow stripes that represent LGBTQIA+ pride. / End image description]

Thanks so much for reading, take care of yourselves and one another, and love and solidarity until next time,

Jx

1. I won’t, therefore, be sharing this particular letter as a separate “Note” on Substack - and I kindly request that readers don’t “restack” it either. I hope that is understandable. Thank you.

2. A note that this is true also for many cisgender and heterosexual disabled people, because it’s about shared incomes - but I’m writing from my own perspective as a queer and trans crip.