Abled people explain things to me, part ii

How to avoid becoming the topic of a justified rant (and keep your spoonie friends)
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by Max Plaise •
Chronic illness and grief - collage artwork of a baby screwing its face up wearing a plastic rainhat. A rain of unsolicited advice comes down on its head from a cloud containing the words: 'you should really try'

[Image: Artful Agony]

As we explained in Part I of this series, unsolicited advice (or ablesplaining) sucks. This can be hard for a non-disabled person to understand. This week’s reason not to do it is:

Because physicists already know about Schrodinger’s Cat

If there’s one thing guaranteed to instantly bond any two chronically ill strangers, it’s a reference to unsolicited advice. There are numerous chronic illness bingo memes going around the internet featuring all of the rubbish we hear as soon as we mention our chronic health condition to someone who knows fuck all about it. It’s like a stinging hailstorm we have to endure every time we step out into the non-disabled world (which includes online).

Earlier this year, the adorable Twitter account @SmolRobots created a special bot at Spooniehacker’s request:

As you can see by the response, it resonated with many.

I’m not going to claim that unsolicited advice is only the scourge of the chronically ill. Anyone with a Facebook account knows that the internet has enabled an epidemic of it. And it is always irritating, often disempowering, for the person you give it to, whatever your relative backgrounds. By making the assumption that someone needs your help, and that you know more about a subject than the person who originally brought it up, you attempt to place yourself in a position of superiority to them (whether consciously or not).

In the case of chronic illness, though, you can 90 per cent guarantee that the ill person knows more even than their own family doctor about their condition/s, especially if they’ve been ill for years. My estimate rises to about 100% if it’s someone with a rare or misunderstood condition, who will often have had to do years of research, self-experimentation and self-advocacy just to get a diagnosis, never mind any helpful treatment. And that, to me, is just one of the reasons why it’s particularly insulting and inappropriate when a well person inflicts unsolicited health advice on an ill or disabled one.

It’s not that different to if you met a physicist at a party and started telling them about this amazing pet cat this guy called Schrodinger had. Except you probably wouldn’t make a dick of yourself and do that, unless you were *really* drunk. So why would you do it when it comes to health?

We call it ablesplaining

Which brings me to Rebecca Solnit’s 2008 essay Men Explain Things To Me*, which inspired this feature. Solnit’s essay looks at the phenomenon that has come to be called ‘mansplaining’, in which men give unsolicited advice/explanations to women, regardless of the woman’s level of expertise in the topic under discussion.

Solnit considers mansplaining a surface indicator of a systemic problem. She tells us about the time a guy at a dinner party repeatedly tried to tell her all about her own book (which, by the way, he hadn’t actually read), ignoring several attempts from his listeners to alert him to his mistake.

In Solnit’s analysis, men repeatedly mansplain because of the bigger picture: that we are all socially conditioned to believe that men’s opinions are more valid than women’s, that men know more than women, and that women are weak and need male help. These beliefs affect every area and level of human interaction and lead to much more damaging impacts than dinner party faux pas.

To Solnit, though, ‘splaining’ (as it’s come to be known) is only an issue of gender: ˜Yes, people of both genders pop up at events to hold forth on irrelevant things and conspiracy theories, but the out-and-out confrontational confidence of the totally ignorant is, in my experience, gendered.”

Liars until proven honest

I’d argue from my own experience that splaining is not about gender specifically, but about power and status in general.

In UK culture (and you can see it in the mainstream media on a regular basis) the most powerful story about chronically ill and disabled people is that we are morally suspect**. Just by having health conditions and seeking support, we are considered to have some kind of moral weakness, to be in all likelihood lazy and/or deceitful. Hence the need for us to be thoroughly grilled and monitored by benefits agencies – we’re all liars until proven honest. We are probably not helping ourselves, and need the well to guide us in the right direction – their ablesplaining is doing us a favour.

I can see this attitude in the things the abled people in my life sometimes let slip about disabled and chronically ill people. They quickly correct themselves, of course. Oh, obviously they don’t mean me – they don’t mean I got benefits too easily. It’s just those other fakers you hear about, the ones who are costing us all this money. The bad ill people.

Among those who’ve said things like this to me in recent years are the support worker who was helping me appeal my benefits decision and a close family member (family seem to be among the worst ablesplainers, if message boards are anything to go by).

The abled could learn from those living with life-shattering chronic illness

What’s ironic to me is that the truth about chronically ill people is exactly the opposite of the popular narrative. Most abled people could learn from those of us who are living with life-shattering, debilitating, decades-long health conditions. Who have found ways not only to survive, but to thrive, within these challenges.

I have come to seek out other chronically ill and disabled people as friends over and above non-disabled people because they often have a level of grit, compassion and groundedness I rarely find in non-disabled people.

I’ve also reached a point where I’m not very interested in friendships or romantic relationships with the non-disabled any more. There are exceptions, but often the average relatively-privileged non-disabled person doesn’t seem to have much to teach me about life and is far too quick to assume they have access to wisdom that I don’t (mainly it seems just by virtue of not being ill). I could handle the first issue, but the second is the deal breaker: it’s tiring warding off that level of contempt from someone you’ve let into your personal life, even if their contempt is not at the level of conscious awareness.

This week’s anti-ablesplaining tip

If you want to have spoonie friends, stop ‘splaining, or there’s a good chance you’ll become the topic of a justified rant (and possibly lose friends).

Thing is, I know it’s hard. Those judgemental attitudes are so ingrained – I grew up with them myself and have had to work very hard to unlearn them. I sometimes find myself doing it with chronically ill friends who share they’re having difficulty – I want to jump in and fix them. I want to tell them they’re doing it wrong and should try [thing that worked for me]. I can feel that urge so strongly, starting in my gut and ready to leap to my mouth with advice they didn’t ask for and probably don’t need (but it would be much less harmful coming from me than from someone with no experience of chronic illness, just FYI).

I’ve now got to the point where I can hold that discomfort in my body rather than inflicting it on the other person. I can feel the shape of my judgement, my resistance to feeling the pain they’re in, my natural tendency to assume I know more than other people, my desire to seem knowledgeable, my instinct to judge vulnerability as weakness.

I can say, ‘I really have the urge to offer you advice here, but I know that that might not be what you’re looking for at the moment.’

And I can let them decide what shape they want the conversation to take.

Try it.

*

In Part III, we’ll discuss the missing link, the element of chronic illness that no one wants to acknowledge – grief.

*This is an affiliate link to Bookshop UK, which supports indie bookshops. If you buy this way Spooniehacker receives a small donation. We pay our contributors and make no profit, and every little helps keep us going!

**From the perspective of chronically ill people, by the way, this is a story about grit and self sacrifice and the choices involved in parenting.