Back on a rainy Saturday evening in August, I was travelling home on a train. I'd just been at Quippings rehearsals, fittingly discussing disability politics, including the behaviours of over niceness and pity thrust upon disabled people. I was looking at social media on my phone, not speaking and not in any need of assistance (I would ask if I was - and that's rare). Suddenly I was faced with this situation:
Stranger on train: "excuse me, would you like a wet wipe?"
Me: "no thanks."
Stranger: "I think your face is a bit sweaty and you could use one."
Ahh they mean well, don't they?
So I wrote about it on Facebook. Those exact words actually. I wanted to show I was amused and exemplify the audacity of strangers. This is what I call intrusive behaviour, no matter how well-meaning their intentions were.
What followed, and even harder to take than the initial intrusiveness, was the responses from friends and acquaintances. They argued that I should educate at all times, and that kindness was a motivator.
While I do educate where I can, I also have the right to decide when I want to educate. Most times I just want to get on with my day. There have been suggestions I should carry cards with an explanation about Ichthyosis, and hand them out to the curious. Depending on how they ask or approach me, I tell them I blog and give them a business card. I don't put anything about Ichthyosis on my card because I don't want that to be defining. And I've also seen how people react to info cards, and it's not positive.
Then there's the kindness thing. A friend said this woman on the train was probably being kind, and she hopes my response doesn't put her off being kind in the future. I totally see this point, but I think people need to consider whether a disabled/sick person is really in genuine need of assistance, or whether they're just being nosy themselves. I would have preferred it if she had said hello, and then politely asked about my skin.
Many told me they have been raised to offer help to people with disabilities. There are so many times I've seen people genuinely in need of assistance and no one stops to help. But often assistance is offered when we are just doing average things. Like eating or reading or using an iPhone to read the internet. Kindness is lovely, but kindness in this form can be attached to assumptions. These assumptions of helplessness that are rude and awkward and pitying. And it's so hard to explain that to people who might not have encountered this in any form.
This is such a difficult issue for me to discuss. Sometimes the comments from others around this topic are harder to digest than the comments received from strangers. It makes me want to censor myself. It's judgmental and demanding at times. I also think that for people who don't encounter these kind of questions on a regular basis, it's easy to dismiss this as caring or curious. Many friends with disabilities and facial differences get it - sharing stories of intrusiveness that I relate to. I read this great blog about the disability voice - the one we put on when we are offered assistance.
I recall Stella Young saying how a lady offered her help in an airport, and Stella asked "help with what?". She didn't need help reading a book. And the lady responded with "I told you all disabled people were rude." And so it's these assumptions about the help we need or the bad lives we lead, and also our responses that create this cycle of further assumptions about our attitude to this help. Assumptions that disabled people are ungrateful and rude.
Similar to Stella's experience, I once had a woman in a London theatre ask if I wanted a drug to stop me scratching. It was dark, she couldn't see me well, and obviously we did not know eachother. She said she was a doctor. How could I accept that? - she's a stranger to me. I'm allergic to some medication and I wasn't about to rattle off my allergies in whispers during a Queen musical. "I was just trying to help", she sighed. And so my declination of her kind offer made me seem ungrateful.
These questions put us on the spot. They are loaded with the assumptions that we need help (and perhaps pity) when we are really just getting on with our day. And they come with the expectation that it's our job to educate them, and be polite - Every. Single. Time.
It's tricky to respond to well meaning offers. If we decline, no matter how politely, we are seen to be rude, creating a bad experience for someone interacting with a person with a disability. And if we really do need help, like a seat on a train or intervention in an abusive situation, how can we ask for it? And I do try to be friendly, because that's in my nature - when interacting with anyone about topics unrelated to my appearance.
In our Quippings show, we did a word score where we each said a word or phrase related to a theme around disability. One theme was over-niceness - showing examples of well-meaningness. Jarrod's phrase, said with a frustrated tone and gesture, was "I was only trying to help". And that parody is so true. When we talk about these experiences of well-meaning people trying to help us, people respond with "they were only trying to help". When I told the wet wipe woman on the train that it was rude of her to assume things about my appearance, she said she was only trying to help. And so, supposedly, I framed her experience with disability as a bad one.
There's a difference between being uninformed about a disability and intrusiveness and rudeness towards appearance. That comes down to politeness and how people enquire. Start with hello. Don't just launch in. And being mindful that if someone looks different to what you're used to, it probably means they've been asked time and time again about their appearance. (I really liked the comment Stella made in an article - "It doesn't matter how we got like this. Really. If you're just sitting next to one of us on the train, or taking our order at a cafe, you don't actually need to know.")
Strangers' well-meaning, kind intentions are rarely malicious, but even so, it's rude, presumptuous and intrusive (and tiring). We are not here to satisfy someone's good deed or be their conversation starter.
Kindness begins with hello. And then, maybe, you can ask me if I need help.
This piece has since been republished on Daily Life.