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@WeAreDisabled

28 Oct

I’ve been asked to give a little insight into my lived experience with #Addisons disease, something I share with, amongst others, #JaneAusten, and JFK.

it’s not actually that easy, as Addison’s is just one part of my weird endocrine tapestry.

But here follows a thread.

I haven’t always had Addison’s disease. For sure, I’ve had adrenal insufficiency as part of a pan-hypopituitary disorder. My pituitary is supposed to be telling other parts of my endocrine system to produce certain hormones but it isn’t.

So I’m on HRT for thyroid…

…corticosteroids, and sex hormones. Unfortunately, whilst I’ve got a good team in place now, clinical management hasn’t always been perfect.

I was over-medicated with corticosteroids for a sufficient time that my adrenals stopped working properly.

A general physician…

Read 10 tweets

@WeAreDisabled

27 Oct

Yeah, so this month has been pretty intense. I have glaucoma and, recently, my eye pressures have been NOT GOOD. But I have a most excellent team of my local optometrist, my GP, my ophthalmologist and his amazing team. They pulled out all the stops, and really got...

...on top of things, going out of their way to have conversations outside of appointment times. Cutting a long story short, I saw my ophthalmologist on the first of October to plan management going forward. I complained about my vision at the same time, and he called it...

...he looked at me, and said "let's do something about those cataracts." Which included injecting stents into the eyes, to relieve intraocular pressue. He did the informed consent thing, then shoved me in front of his business manager - first operation was on the fourteenth...

Read 4 tweets

@WeAreDisabled

27 Oct

I touched earlier on inclusive working, and can’t over-stress how remote working/work from home, with flexible hours are so important in enabling the likes of me to be useful contributors to the economy, rather than a burden because culture doesn’t ALLOW me to work…

…in the traditional 9 to 5, in a location to which I’d have to travel. And the travel in itself would sap more spoons than I have. I tend to work seven/seven, as it’s the only way I can distribute the hours within my tolerance.

It has NOT been easy, keeping up a stream of work, whether as freelance, contracted, or labour hire. I most sincerely hope that employers learn the lessons of COVID, and that more inclusive workplaces are the result.

Read 6 tweets

@WeAreDisabled

26 Oct

New avi.

Hello, everybody, I'm back! It's been a while, and I've seen a few changes. Heck, that's an understatement, we've ALL seen LOTS of changes this year.

There are a few topics related to this account that I'd like to address, hopefully without getting too ranty.

One of these is the accessibility features built into everyday smartphones (and tablets) which I've used for the purposes of work, but have found to be valuable...

Read 5 tweets

@WeAreDisabled

3 Jul

(Starting another thread here) So what do we do about stigma, shame, and violence as experienced by sex workers and disabled people and especially disabled sex workers? There's no easy answer but there's definitely one huge step we can take: decriminalization/decarceration

Criminalization and carceral systems are a function and a cause of violence.

CRIMINALIZATION AND CARCERAL SYSTEMS ARE A FUNCTION AND A CAUSE OF VIOLENCE.

And at least when it comes to sex work, *advocates for criminalization know this*

When I talk about sex work criminalization, I include partial criminalization, i.e. criminalizing the purchase of sex, sometimes called 'the Swedish Model' or the "Nordic model'

Read 21 tweets

@WeAreDisabled

3 Jul

But first I wanted to talk about stigma. Stigma and criminalization/ carceral systems are the two main drivers of violence against sex workers and also, I would argue, disabled people, even if they are not criminalized specifically for disability.

Stigma made up probably the majority of my thesis, " 'Blemishes' and 'Abominations': the Dually Stigmatized Identities of Sex Workers with Disabilities" and I'm going to try to boil it down here.

As I mentioned before, the title is a reference to a quote by Erving Goffman, who wrote the foundational sociological text on stigma back in 1963: books.google.com/books/about/St…

Read 30 tweets

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