Living with an Invisible Disability 101: The Facebook Effect

I have a real love-hate relationship with social media. As a person with chronic pain who doesn’t get out in the world very much, it can be a lifeline, keeping me in touch with friends and family, colleagues in music and writing, and the wider world.
But it can also be stressful, and I find this deeply problematic. I have noticed recently how incredibly toxic online discourse often becomes, particularly for some reason, when talking with men.
It’s true that written words can’t express things we would normally deduce in person – such as facial expression, body language, or tone. But in my opinion this should make us less certain of the intent behind others’ online utterances, rather than more. I’ve recently discussed this with other female friends (on Facebook, of course) and present our shared experiences here.

Example 1.
A week ago, I expressed an opinion about an article based on my lived experience (a lifetime of living in the world while managing disability). The article posited that, in this age of ‘austerity’ (referring to cuts to disability services – such as adequate supports to aid participation in education) Stephen Hawking would never have been able to achieve the things he did.
A male friend, who is able-bodied, disagreed. He claimed the headline was patronising. ‘Hawking had guts … to say that Hawking couldn’t have succeeded without a solid welfare orientated agenda, that is to underestimate the spirit in the man.’
I asked if he had actually read the article.
He said he had and disagreed with it.
I explained why I thought he was wrong, how people with disabilities really tire of the ‘triumph of the human spirit’ narrative, and that we need services and supports to participation, not to be held up as either objects of pity or inspiration. (This is not a radical stance; it is Disability 101, as any person with lived experience could attest.)
He accused me of being ‘combative’.
I said I was not being combative, I just disagreed. And suggested that, me being female and he being male, might he be indulging in sexist tone policing? Which perhaps may not have happened had I been male.
He accused me of being ‘hostile’.
I suggested further reading may clarify what I’m getting at, and told him where to find the links. I then reaffirmed my affection for him.
A female friend piped up and expressed surprise that this person was so resistant to the conversation, and pointed out that both her and my points of view come from lived experience. And that his take on it is hurtful to us, and people like us.
He shut down the conversation.
I said, ‘Fine, we’ll just exchange pleasantries from now on.’
And I expressed my disappointment. I also said that at no point did I feel, or intend, hostility, that from MY point of view we were just having a ‘conversation’.
He said, ‘I was only responding to the headline’. (!)
He said, ‘Let’s just get on with our weekend’.
Female Friend #1 said, ‘Disagreeing is NOT hostility, you are a friend and we just want you to understand our point of view’.
I said, ‘I am sick of this kind of treatment, and you owe me an apology’.
He unfriended me and sulked off.

So there it is.
And then … Playing the wounded victim.

All because a woman tries to have a conversation about something she knows and cares deeply about – on her own social media page – with a person she had respected as educated and knowledgeable. But who, in this case, has shown themselves to be not only clueless, but also rigid, unbending, and inclined to interpret any disagreement from a woman as ‘hostile’.
Stupid stupid me. Expecting equality.
Some people just refuse to get it. If I – or in fact ANY woman – don’t conform to the behavioural and conversational norms THEY want to impose on me, I am censured and painted as aggressive.
How, then, is it possible to even be friends? Is it even worth it?
When he has just demonstrated how little he respects me, or my right to a dissenting point of view. Even when I have lived it, and he has not.

Here’s a pithy cartoon from The New Yorker that nails this subject:


[More on this from the terrific site, ‘Everyday Feminism’. Which said bloke is highly unlikely to bother reading. Let’s check our privilege and actually listen before dissing anyone who disagrees with us, eh?

And here is a great link from Carly Findlay for media people (but it applies more broadly too) about writing and talking about people with disabilities.  As Stella Young so pithily said (Google her TED talk, it’s essential viewing), we are not interested in being your ‘inspiration’. ]

Example 2
A couple of days later, the same Female Friend (who, incidentally, happens to be very knowledgeable and has a political science degree) messages me privately:
FF#1: ‘Speaking of narcissists, look how a bunch of dick-swingers just took over a thread on my timeline. Just take a look – it says so much about communication problems on social media and how we women are treated – i.e. like we don’t exist!’

Me: Well, we do, but only to tell them how fabulous they are!’

So, I go and have a look.
FF#1 has commented on recent political happenings and from there the thread has been completely hijacked by several men who
(a) do not respond at all to her original post, and
(b) are becoming aggressive and abusive towards each other, with liberal sprinklings of obscenity.
Notable is the use of the C-word (because we all know female genitalia is the WORST thing you can call someone, right?).
FF#1 repeatedly asks them to stop, but they ignore her. On her own Facebook page.
The aggression is astonishing.  I weigh in, tell them their behaviour is disgraceful, to go abuse each other somewhere else, to get off FF#1’s page and take their bad attitudes with them.
I ask them who the hell they think they are, behaving like this.
And I call them what FF did to me privately, ‘dickswingers’ (because it’s a deliciously descriptive word).
One of them takes offence and calls me rude and ‘sexist’!
I tell him he has already forfeited any right to politeness from either me or FF#1.
Me (privately, to FF): ‘I just gave them a serve. I am over this entitled male behaviour online. Since I have started demanding ‘respect me or fuck off’ I have lost a number of pretend friends on social media. And I am bloody glad of it.
You rock, FF. And at least YOU can have a conversation and stick to the issues.’
FF:#1: ‘Perhaps I am too nice’
Me. ‘Yeah, that’s pointless. I’ve been very ‘nice’ to [male who unfriended me] these past six months. Even made him a birthday cake. Sang at his parties. Invited him to [a camping weekend]. And listened politely to his appalling attempts at songwriting.
Make any difference to the sexism?
The patronising?
The ‘I know better than you’?
Not a bit!
I am OVER IT.’
FF#1: ‘What happened on my post, this isn’t the first time, it seems any time I try on here to engage in political discussion men take over the debate, ignore my contributions and think it’s ok to be abusive toward each other. It does end up silencing my own contributions and I am heartily sick of it. What is even more disappointing is these men are supposed to be from the Left!’
Me: ‘It occurs to me that we people with disabilities use social media for our ‘actual’ social lives. Then these idiots come into ‘our’ space and disrespect us.
Not cool – and worthy of comment, I think.
I am liberal with the block button. I need my social media, it keeps me connected and feeds into my blogging and writing life. This behaviour is nothing less than silencing.’

Dear Reader, you are probably yawning by now. After all, this is just a usual social media experience for most women. I have tight privacy settings and try to avoid engaging with strangers. But this aggressive silencing is coming from our so-called ‘friends’.
I wonder why these men dislike us so much?
I wonder why our expressing an opinion – however politely – is so often taken as a personal attack.
I wonder why, despite many positive experiences together in a friendship, (with quite a bit of giving on my part), one single instance of me disagreeing with them is enough to end the relationship.
I wonder if they are actually AFRAID of me, and WHY.
In the end, I give up trying to make sense of it.
I surmise perhaps there was a difficult relationship with Mummy that is still being projected onto ALL women decades on.
I decide it’s not my problem and resolve not to waste any more of my time and goodwill on entitled blokes with prickly egos. They can make their own effing birthday cakes!

Did I mention I am still chronically ill, in chronic pain and rarely leave my house?
That my Female Friend still has Multiple Sclerosis, is also in pain, and experiences similar isolation?
That some of these men works in fields that requires empathy?
Does anyone else see the disconnection here?

How dare we speak! On our own Social Media pages! Guess we are just effing bitches!

Example 3
The next day, I post an article about female ‘likability’ with the comment that,
‘Being a ‘likeable’ woman is the antithesis of all the other things I aspire to. Such as: educated, insightful, intelligent, intolerant of bullshit, not easily manipulated or suffering fools, an artist/writer/intellectual, etc. As recently as this week I was labelled ‘hostile’ simply for politely disagreeing with somebody. I have come to the conclusion it’s pretty much impossible to be any of these things I have listed and still be considered ‘likeable’.
I blame Patriarchy. Ah well, popularity is overrated anyhow …’
Female friend #2: I used to write letters to the editor in Darwin for several years – environmental, feminism, social justice, indigenous issues, east timor, etc; I was seen as aggressive and considered to be a radical left-wing loony hairy-legged man-eating lesbian greenie. When I met people, they often stepped back and said, ‘Aren’t you little?!’
People really don’t like women who express opinions, use big words, articulate reasonably well, are intelligent, have a big vocabulary. In person I’m totally not what they expect if they read my letters and articles. Men don’t experience that hostility that I did. People are very odd about women who write or use words. I’m not a speaker at all, my thinking is done in written words – and is apparently unacceptable – unless it’s nice, easy stuff. It’s a funny world (not)!
Me: I continue to be amazed at the nastiness I experience just for being who I am – and for speaking and writing at all.
I consider this aggression deliberate silencing.
As I said to the person who called me ‘hostile’, I didn’t spend years at university only to dumb myself down to stroke insecure mens’ egos.
They are just going to have to get used to it. We are here, we’re educated, and we’re not going anywhere.
FF#2: It is silencing. They want to censor you, make you circumspect, shut you up. I’m glad to hear it won’t work.
FF#3: These were always underlying attitudes to women who speak out, but nowadays the culture of knee jerk abuse against women has gone viral. The nastiness IS amazing, and rather depressing to realize there are so many men out there in denial of women having anything remotely like a fair go. But then we also live in a country that created its national myths out of men going to war and becoming heroes. These are male created myths and unfortunately many men believe them. All you can do is speak your truth and let them learn the hard way, if at all.
Me: I also have a collection of useful memes for such occasions, such as this one:


And this:

Truth is, my patience is running out.

FF#4: I’m still amazed at men’s response whenever I engage in on-line discussions – how threatened and patronising they become when you challenge or disagree with them – inevitably ends with abuse or sad man-hating tags.
The male ego is pathetically fragile and a very real enemy of women’s enfranchisement – as I get older I find myself disliking the male of the species less …

FF#3: It’s a worrying trend that we have all these these misogynist neanderthals wandering about. How come we’re so lucky that we’re not married to one of them? Let’s not forget there are plenty of good men around as well, and some of them are even feminists.

FF#4: I’ve got lovely brothers, a son and a grandson which helps me maintain perspective – but there are so many bogans in public life and politics and the good guys are so reluctant to speak up or be counted [that] they’re not allies either! Just appeasers – telling us to disengage or not take it so seriously!

FF#3: Tone it down. Lighten up. Get over it. Don’t get your knickers in a knot.

Me: So bloody boringly predictable, eh?

FF#3: In the end it’s their problem and the problem of the women who have to live with them.

ME: As for me, I’m just gonna keep writing. And ignoring them. It’s apparent that THAT makes them apoplectic!
Who would have thought that just the simple act of expressing an opinion could be so threatening to so many of these manbabies?
What the hell is happening when we can’t have a civil discourse, even with ‘friends’, without coming up against the expectation that women should be ‘nice’ and ‘pliable’ at all times?
I wonder if this behaviour is an attempt to keep us off social media – the one space where people like me are finally able to be part of the conversation?
And when did the male ego become so fragile that this kind of bullying of women is now commonplace and, seemingly, acceptable?

I’m sorry, Fellas, but you no longer own all the spaces, or all the things.

Get used to it.




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