When helping isn’t helpful

Unwanted help has been on my mind the last couple of years.  It started with The Day of the Doctor, which introduced the marvelous Osgood, a young UNIT science officer with a wardrobe full of Doctor-inspired outfits and chronic asthma.  I love Osgood.  She delights my heart.

Osgood is also a gift to cosplayers.

I did not love the recurring thing where Kate Stewart, Osgood’s boss, has to continually remind her to take her Ventolin.  Osgood is a grown woman, who has presumably been living with asthma her entire life.  No matter how many absent-minded scientist tropes she fills, she doesn’t need her boss to remind her to take her medication.

The idea that a person with a chronic illness or disability needs looking after — needs protecting, even from themselves — is pervasive.  It’s big in Marvel Movieverse fandom, where it’s hard to escape the Tumblr posts about Big Brave Masculine Bucky protecting Tiny Weak Delicate Pre-Serum Steve from bullies and diseases alike.  Or the posts about wrapping Tiny Weak Delicate Pre-Serum Steve in a blanket and never letting him leave for his own good.

(For some reason, no one ever frets over Nick Fury’s lack of depth perception, or headcanons Bucky and Steve helping Sam through his PTSD.  So strange.  I can’t imagine a single reason why that would be…)

**

 

Sometimes people — mostly friends and family — say to me, “I don’t know how you do it, Liz.  If I were in your shoes, I’d just stay in bed all the time.”  Or, “You’re just a bit delicate, aren’t you?”  Or, “I do worry about your health, Liz.”

And, like, I am a delicate hothouse flower.  I spent a lunch break last week wondering if it’s appropriate to disappear into the bathroom and bathe my whole knee in Deep Heat.  I plan my grocery shopping on the assumption that I’ll only have the energy to cook a handful of times this week.  When I’m out of the house, I’m constantly estimating distances and calculating the fastest route that involves maximum sitting.

But that’s just part of who I am.  I’m also wondering about my fish score in Neko Atsume, planning my next blog posts, mentally sketching Deborah Mailman as Imperator Furiosa, idly plotting my next fic and wrangling ideas for a possible novel.  (Or four.  Or five.  My brain has been on fire lately.)

In short, I’m a delicate hot house flower, but my stem is made of hard, impenetrable leather.  (I’m also not very good at botanical metaphors.)  I dislike being reduced to my chronic illnesses.

**

The late Stella Young wrote Asking for it: The politics of assistance back in 2011.  This piece is, in part, Stella’s account of how she had to learn to ask for help when she needed it, and that’s a skill I need to improve on as well.

(Or, at least, not put off asking for help to the last possible moment, having been in denial that I would need assistance at all.  Thanks again to Steph for picking me up from the hospital, feeding me and putting me on her couch for the night after my cactus surgery!)

As people with disabilities, assistance or help is often forced upon us by non-disabled people. People try to ‘help’ us without asking. Like the time I boarded a train carrying my coat. A woman who, until she spotted me, appeared to be minding her own business leapt up from her seat, wrenched my coat from my hands and started shoving my arms into it. No amount of verbal protest or assurance that I was carrying it because it was too warm for a coat would dissuade her. Before I knew it I was buttoned up and she was patting me on the head saying “It’s my pleasure sweetheart,” rather loudly and with the ludicrous annunciation us disabled types seem to elicit from people.

I did, and still do, reject this kind of ‘assistance’. It’s not asked for, it’s not needed and it’s not on my terms.

My disabilities are invisible, so I don’t have to put up with that treatment from strangers.  But I do get it from friends.

In particular I get it around food. I’m pretty upfront about having gluten and lactose intolerances.  Sometimes when I eat something, I get sick. Other times, I don’t.

It’s variable, and I’m still learning what I can and can’t eat, and how to know.  This is something my nutritionist recommended I experiment with.  “Go to restaurants,” she advised me, “eat a bowl of pasta, and pay attention to how you feel as you eat.  You’ll learn when it’s time to stop.”

Sometimes I can eat a bowl of pasta and follow it with an ice cream cone.  Other times, a few croutons and a bit of Parmesan on a Caesar salad will have me running for the bathrooms.  (It’s partially psychological, my nutritionist warned me, and that doesn’t mean it’s not real.  It might just be harder to predict.)

So I try to keep gluten and lactose to a minimum in my diet.  I could eat low gluten bread at home and be strictly gluten-free outside, but I’d rather eat gluten-free bread and be able to indulge myself when I’m out.

I realise this makes me the person actual Celiacs hate, but there you go.

The bigger issue than my own choices is the unexpected dairy or gluten — not just because I like to choose my moments, but because it invariably comes at the worst possible time.  (Last week, work bought me a beautiful gluten-free birthday cake … that was full of cream.  I was uncomfortable all weekend.  Cream is the WORST.  And I don’t even like cake that much!)

But that’s a bug.  Worse is the unsolicited food police.

If your friend was on a diet, and you watch her order food and then say, “That looks like too many kilojoules for you,” you are a terrible person.

So when I order food, and you say, “That has gluten in it!” or you ask pointedly, “Is that gluten-free?” I find it rather annoying. Don’t reply to an Instagram picture of a delicious sourdough with avocado smash, “But that has gluten!”

(Lots of people who can’t usually handle gluten are okay with sourdough.  Why?  Well, there are lots of possible reasons.  Maybe it’s magic.)

minion

No matter if you’re a bit of a mother hen, or just watching out for me; I am thirty-three years old, and I can choose my own meals.  Yes, even if you’re just worried about me. I’m worried about me, too. And I can handle my own decisions.

This came up a lot at Continuum, to the point where I was seriously thinking of adding “And don’t food-police the Chair” to the Code of Conduct. I can run a con. I can run my life.

For many reasons I didn’t draw these boundaries at the con, but I’m saying it now: don’t do that.  It’s infantilising and insulting.

I know the state of my digestive system, how I’m feeling, what foods I’ve been avoiding for a week in order to avoid worrying about my diet at the con.  I’ve weighed up the cost, inconvenience and general dissatisfaction of gluten-free food against the cheap, convenient and satisfying “forbidden” food I can acquire without thinking.

But you don’t know any of that, and I’m not going to tell you, because it’s none of your business — whether you are my mum, or Stephanie, or a random person who follows me on Twitter.

(Actually, I might tell you in the course of a conversation.  But that’s still not permission to be the food police.)

If I seem angry right now, it’s just that I’ve been sitting on a lot of pent-up irritation basically since I first discovered I had food intolerances.  Suddenly it was open season on my digestive system and food intake, a chilling foreshadowing of what life is going to be like when I have to start walking with a cane.  (Or maybe then I’ll get the flipside — “What do you need that for?  You don’t look disabled.”)

**

Stephanie, Noted Fatberg Zoe and I went to the art gallery on the weekend.  A couple of times I had to stop and rest.  The others waited with me.

Then Steph asked (after we finished with the exhibit that was the point of our visit), “How are your feets?  Can you do more?”

And I said, “I think I’m good.  Let’s look at the embroidery exhibit.”

So we did.

It was a matter-of-fact, respectful, grammatically amusing exchange.  It was polite, non-intrusive, and gave me room to say, “I’m off home to DIE OF EXHAUSTION, but you guys go on.”

And it’s just a shame that these qualities made it unusual enough to stick so clearly in my mind.

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8 thoughts on “When helping isn’t helpful

  1. Many nodding thoughts. My food issues are completely strange (canned tomatoes?) and I don’t fall into any groups that are socially recognised (except maybe – ‘not spicy stuff’) so I don’t get food policing very often. (I sometimes get the other way – ‘are you sure you don’t want beer/soft drink with your pizza?’ – when that’s one of my few almost guaranteed issues) But I totally experience the ‘sometimes food works and sometimes it doesn’t’ thing as well as a ‘sometimes I know it won’t work and I just want it anyway’ thing. Stomachs are strange things.

    1. Do you also get people going, “Oh, you just need to be more adventurous with spicy food!” with an implicit side of “And avoiding spicy food is totes racist!”?

      1. Not so much around here – probably the upside of living in a place where most of the food is fairly bland (and the local sushi place clearly labels anything spicy, bless them). I think I’m also fortunate in reflux being a commonly heard of thing (though my particular type is more rare).

    1. Wait, let me explain. Amongst a large amount of my Perf friends, when someone says ‘thank you for halping,’ that’s code for ‘you’re not helping right now.’ It’s never occurred to me before now to be grateful that we have that shorthand.

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