Feminism and disability

[BellaSolanum]

Wanted to start a conversation on how and where disability intersects with feminism.

For example, is disability seen or treated differently depending on which sex it affects?

Be interesting to note the differences between different types of disability, whether physical, mental, etc.

My own perspective is from the view of someone with a chronic pain condition, health issues relating to the reproductive system and a mental health condition.

I know both aspergers and age related health problems were mentioned in the Pub, and there seems to be a lot to explore there too.

One subject I'd like to explore is the idea that disabled women are seen as selfish for having children, while I don't recall men getting the same judgements. Is that one just me taking it personally (have been told I was wrong to have children) or is it part of a larger problem?

Fair point, hadn't thought about asthma.

Frau If you don't mind answering, is your disability an invisible one? That may be why it's affected by that taboo, I know mine is, so wonder if it's because a lot of people don't necessarily beleive they exist and we internalise it and partly convince ourselves that we shouldn't need painkillers?

Yes, Bella, it is and yes I think you might well be right.

I know I sometimes convince myself I've imagined it and that I'm being overdramatic when I tell people I have days where I can barely move, and then one of those days rolls around again and I get angry at myself for buying into the "scrounger" bullshit.

Buffy I could have typed your post about possibly being Aspergers word for word (except for ditching research and becoming a civil servant). I will be meeting Occ Health soon to discuss reasonable adjustments - though knocking down the building or banning hotdesking are unlikely to be possible, and my last OH assessments were fairly useless. On the plus side I wrote much of the assessment myself in the end so could try that again...

Time to take painkillers myself - codeine is the only one without terrible side effects for me, but can only take it before bed. At least I have decent GPs who support me as much as they can, but get limited by new rules - I used to be able to get meds for up to 6 months, now it's hard to get a month so have to pay much more. Ought to sort out an annual prescription ticket. I have had a lot of medics be surprised when looks and 'discretion' aren't my main concerns of treatment - not just because I'm female but because most hearing aid users want invisible (finally they are being seen as potentially cool, like glasses 25 years ago), and virtually all women with SPD in pregnancy refuse to consider a wheelchair as it's too alien (as well as being 'failing') - whereas my hands are too buggered for crutches so it seemed only sensible, but apparently most women decide just to stay home in that situation. I managed to hire a decent chair and get public tranport all over the place so early mat leave pre-baby was great.

People poking you and treating your body as public are pretty similar with both pregnancy and physical disability, too.

God hotdesking has been a nightmare for many of my colleagues who have specially designed and adjusted office chairs, computer mouse, keyboard, wrist rest etc

Of course in theory you can all adjust everything and move stuff around as you need it but in practice it makes things very difficult for someone who isn't in a position to be able to just sit down at a random desk and be able to manage with that. So many end up working from home, which I know is a welcome alternative, but it can also mean missing out on some of the positives of being around colleagues and generally participating in the office environment

I would add that this does disproportionately affect the women because they are the ones who tend to be less able to get in early to nab the desk that would best suit them, or even a desk at all sometimes, because they tend to have the school run

Exactly Petula - in my case I can't do the adjusting myself but no longer have admin staff I can ask to help as they have been centralised elsewhere. And while I can and do work from home a bit, I'm too deaf to do phone meetings - the last time I did one with three people on the other end, my colleagues were really worried after as I looked grey from fatigue. If only we could use instant messenger for people in other organizations. And just talk to each other!

Don't get me started on the hassles of getting kit replaced - my mouse cable was stolen as its the same as a phone one, too cheap for HR to do, not supplied by IT, team need 3 quotes and a business case...

The hotdesking and paperless stuff came in while I was on maternity leave, so unable to influence the implementation. Another example of disabled women beingdisproportionately affected by stuff.

Hadn't thought of the issues with hotdesking. What is the point of it anyway? Does it have any benefits?

I can't actually take painkillers, for a long long time I was on a cocktail of diclofenac and cocodamol, but that stopped making a difference and it was decided that if it wasn't helping then it wasn't worth the risk to my liver. Even tramadol has never helped.

I vaguely recall reading somewhere that most drugs aren't tested on women due to the possibility of women getting pregnant or something? That also puts us at a disadvantage. Maybe there's some painkiller that could help me that works better on a female body than a male one?

In fact here we go.

That puts women at a disadvantage when seeking treatment for health problems. At all levels, not just the disabled. But obviously the more disabled the more affect this kind of thing will have.

Select quotes from that article
Of course, this bias isn't malicious—just a little lazy. Because males don't have a menstrual cycle, their hormones do not fluctuate much over time, making them a more homogenous study population and ensuring that results are easier to analyze and interpret

Surely that's a good reason for testing women??

In 1977, partly in response to these tragedies, the FDA banned women who could become pregnant from participating in early-stage clinical trials. In practice, the ban ended up applying not just to women who were likely to conceive, but also women who were not sexually active, who used contraception, or who were homosexual. The law was upheld until 1993

Wonder how many drugs that are now on the market were released then?

YY that's the thing of women always being in a state of "pre-pregnancy". The default is the male body

I think hotdesking is essentially cheaper and more flexible from a facilities POV I believe. On any given day you will have X number of desks unoccupied due to staff being out of the office and visitors may come and not be able to use desks because they are allocated to people who aren't there and they aren't visiting the same department as the empty desks iyswim. So more meeting rooms get booked up, people complain about that to facilities... Also people having their own private offices takes up more room than lots of small bookable telephone rooms or meeting rooms and loads of open plan desks. I'm not a facilities expert but these are the reasons that were put forward at the site where they switched over to hotdesking. In theory it's more egalitarian because there's no one who always gets to sit in a nice spot or have a private office. In practice of course the "nice" desks are nabbed by the same people every day who are the ones who can get in early, and see notcitrus's post about the problems for anyone with additional needs! It's a classic case for that "equality vs. justice" meme I think

Oooh interesting thread. So much to unpick.

I have mental and physical health issues. Physical include Hashimoto's hypothyroidism (people say 'oh I know someone with that, don't you just take meds and you're fine. Um. NO ). Also a collection of vague nonspecific symptoms, like fatigue, joint pain. Had every blood test they can do, some things a bit off but they can't pinpoint anything. Suspect coeliac, maybe just gluten intolerance.

So tired of medics assuming my physical symptoms are due to mental health, especially anxiety - 'neurotic woman'. Not to say the two aren't interlinked, of course they are, but that's one thing, to have physical problems totally dismissed is so frustrating.

I use the lift sometimes at the station on my journey to work, if I'm particularly in pain and exhausted. I deserve to ffs but the looks I get, like I'm lazy - I'm youngish (30s) don't look sick .
Some idiot couple once even commented. They got an earful - serves them right for messing with me when I was already out of cope. They were late middle-aged with no visible need to use lift either, why should they give me crap bc I'm younger?
Oh and getting a seat on the train, yeah, no. (Occasionally before giving up gluten when I was bloated ppl would offer assuming I was early pg, meh, it's a seat, I'll take it, thanks!)
Most of the people judging me would be in bed if they felt as like a dishrag as I do on a bad day, it's not just aching, it's also digestive symptoms, exhaustion, which lowers my mood and depression which then makes symptoms worse...
Oh and then on good days I'm fine. So people assume I'm better. Love fluctuating conditions.

Men probably struggle on more due to masculinity crap, but get taken more seriously - if they say they need to use lift/ to sit/ rest it's usually assumed they actually do need to, women are imagining it, neurotic, or lazy and faking. Also class issue though, think working-class 'benefit scroungers' get accused of faking equally regardless of sex.
If I'm (mildly) rude/ short on a bad day due to complete out-of-cope, I think women, especially white mc women, get held to a much higher standard than men.

Yep, someone talked about grooming...women can't win. If we do, we don't look sick and must be faking/ imagining it or be miraculously better, if we don't ugh manky cow, how DARE we not be visually pleasing!

all.

This thread has reminded me of something I heard on the radio. As I try to type it out I know I'm going to put my foot a little in but I hope by the end for the post it will be an ok thing to have said.

So apparently in Germany they don't separate out psychosomatic illness from physical illness. That if you have symptoms that aren't immediately presenting in a physical ways you'll be referred to an internal medicine specialist who has additional training in the mind. So they are able to look at both potential physical and physiological causes of the symptoms and treat them at the same time.

I wondered if anyone who has an invisible disability had spent time in Germany and noticed a difference in treatment from either medical people or society.

Also thanks to everyone for sharing their experiences.

Can I just say this thread has helped me so much. Sometimes I just feel so terribly alone due to feeling like a freak and trying so hard to pretend I'm not disabled.

Thank you

That sounds like a good system Hazchem, I know my physical health and mental health are heavily entwined, so specialists who can deal with both would be amazing. At one point I was seeing two specialists, one for my pain problems, one for my depression. The depression specialist was saying "once your pain issues are sorted your depression will sort itself out", and the pain specialist was saying "once your depression is sorted your pain issues will sort themselves out". Which meant that very little got done about either issue.

SpecialAgent

That sounds really hard Bella and so freaking frustrating. It did sound amazing and just so sensible.

Shit. I wrote an article about hotdesking earlier in the year and I didn't even think of the implications for people with disabilities. None of the stuff I read about it mentioned disabilities either but that's no excuse.

We're supposed to have solved the hotdesking problem by assigning set desks to those who need them, and to be fair when my team were to be moved to 'real' hotdesking with 80% the number of desks as people, I was given a desk plan and the pick of where to sit, so am away from noisy printers etc. But then other early birds come sit around me so I'm isolated from colleagues, no-one talks any more as they want to be considerate, which means I never hear anything as its all whispers, and whenever I'm supposed to move and work with some other team, I can't as I'm reliant on someone moving my kit for me. So I've ended up with appraisals saying "not very proactive at contacting people" and having to point out I'd spent two months getting my manager and others to chase telecoms every day because I didn't have a phone, and its not possible to phone people without a phone!

The more we're supposed to be in flexible teams in different groups each week or so, the worse it gets. And then I get told by admin and HR I'm being unreasonable. I probably should raise a formal grievance but I did that years ago and it was deeply unpleasant even when I knew I was good at my job. Now I'm not confident I can be, but it would be good to have the option to try.

Bumping this thread.

I became sick/disabled several years ago and found it so frustrating that having a limiting condition(s) just didn't 'fit' the system when it came to needing help with childcare.

Disability benefits seem so focussed on your ability to do paid work or not. But what if your disability makes it hard/impossible to care for your dcs? For a start you don't want to advertise that fact in case it triggers social work involvement but it seems so hard to get any other help. I ended up hiring a cm for childcare, which I couldn't get wtc for as I wasn't working. What about the majority of women who can't afford this?

I think women are just meant to suck it up and carry on, in a way I don't think men are.

Btw buffy how is your aspergers diagnosis journey getting on? I have traits and sometimes wonder if I should go down this route.

Thanks for the bump, i didnt see this last time :)

I definitely feel that as a disabled woman i have to put effort into my appearance that i wouldnt as a disabled man. I am paranoid about appearing anything less than perfect, the wheelchair already makes me 'undesirable' enough on its own (crappy feminist beyond, you know it is not your job to be decorative ). And yy to the worry about caring for the kids, but being wary of how much to admit that before people want to take them away.

And then yes, all the shit from trying to get an ASD diagnosis for me too (interesting to see anotherr ASD dancer upthread too!)

To pick two events that i feel were hugely affected by being a woman...
1- psych referral after my second child. Having had depression for years, (way before i met my dh, never mind had my first child) my gp referred me over to cmh with concerns re rapid cycling bipolar. The mh gatekeeper nurse said i had pnd and brushed off all other concerns. Twat. Put me off speaking about mh concerns for the next two and a half years. (I'm now part way through the process again, much nicer gatekeeper and evidence pointing at asd)
2- gynae referral. Rectocele (rectum prolapsing into vagina) diagnosed by gynae-specialism GP and referred to hospital gynaecology. Explained all my other health issues (i have eds) and how it is related - previous inguinal hernia too. She examined and said there was nothing at all there, stated it is normal to have to 'digitally evacuate' ones bowels (tmi!), and problems were (as above!!) blamed on my 'recent' birth (by this time, ds2 is 18m old). My rather fragile mh was knackered, i bawled my eyes out in the room and gave up. Two years of worsening symptoms (along with my other conditions shooting downhill) and i get up the courage to ask for a second opinion. Not only is my rectocele severe, i have a cystocele too. There is no way it would not have been visible in the earlier appointment. So i pissed and shit myself for two years because some doctor thought i was whinging to complain about gynae related issues as a young woman.

That turned into a bit of a rant

Oh another one, i've been a regular fainter since i was a teenager, now know that this is very likely because of dysautonomia caused by the eds. Yet for years i was told it was because i was female. Whether medically because of periods or more of a 'swoon' reaction.