Today I am taking my children out. I made it my New Year’s Resolution (*eyeroll*) to take my kids out with my husband more whenever I have the energy, but the idea fills me with dread. Not because I am suffering from social anxiety (I do, but that’s not why), not because going out drains me of all energy (it does), or because I will spend the day in pain (I will). It’s not even because I’m worried about the inevitable access issues, or the often scrutinising questions about my disability. The reasons I’m dreading going out are far different.
I have such limited energy that I can only wash or bathe once a month, the same goes for washing and brushing my hair. Occasionally I get lucky and need to go out just a couple of days after I’ve been bathed. Sometimes like today, it’s been the full month. If I bathed today, or yesterday when we made the decision about today, I wouldn’t have the energy to go out. I also don’t have the energy to get dressed more than every 3-4 days. I’ve tried to buy pyjamas that look like they might be day clothes for this very fact.
My husband offers to bathe me on a very regular basis, he loves me and also that’s quite a whiff to share a bed with. And he also offers to help me dress. When I do bathe it is he who runs my baths, lifts me in and out, washes my body, washes my hair, shaves my legs and brushes my hair. He helps find my clothes, and helps to dress me. Though I have drawn the line at underwear because a) bras seriously hurt my back, and b) you have no idea how evil pants are to put on until you’ve got a buggered body. However, it is all so painful and a complete drain on my energy, which seems to already work in negative numbers, that most of the time I just can’t face it.
As such, today when I go out I will smell, deodorant isn’t as masking as I’d like to think. I will have greasy hair, that is knotted and flying in several directions (it’s also been 2 years since I could cope with having a haircut), and I will be wearing my pyjamas. I try to mitigate against these things by shoving a hat on my head and covering my legs with a blanket, but the overall look is there. I am the stereotypical bag lady as far as the eyes of the world are concerned.
You may think society would look at a woman in a wheelchair and make some attempt to understand why I look and smell like this, but it doesn’t. On many occasions I have seen groups of people pointing and laughing at me, I have overheard young girls making comments to each other, people have said mean things to me directly. Additionally, though it is not his fault at all, my son who has autism will make comments which make me pray, albeit atheistically, for the ground to swallow me whole, including: “Ugh, what’s that smell?!”, and “Silly mummy, you have your pyjamas on!”
I don’t go much into privilege checking, though I will occasionally, politely, ask people “Do you realise saying that is ableist/ racist/ antiziganist/ sexist/ transphobic/ homophobic/ biphobic/ whorephobic”. Which is privilege checking, but without the stereotype beloved of anti-intersectionalists, “Check your privilege”. We each and every one of us has privilege, unless of course you’re a disabled, Hispanic, lesbian gypsy trans* woman, sex worker. It’s not the concept that you’re a lucky bastard and should shut the fuck up, it simply refers to the fact that if we are not within that demographic we may not actually understand the experience of that person. We may not understand the world from their point of view enough to understand why something might be offensive to them, we cannot tell them about their experiences as if we have more authority on it than them, because lived experience is a damn sight more real than anything the “common sense brigade” can come up with. We may not understand the micro-aggressions people cope with every day, or the way that society shuts them out. So we may not understand why, if we use a certain term, or tell someone what they should do, or that we don’t like their tone, that they become angered or upset by this.
Sometimes I will say or do something, and someone will be offended by it, and I might not understand why it is offensive, and it makes me feel small to be told I’m wrong. I used to get angry when it was pointed out to me, not outwardly like some, but inwardly I would feel affronted. Now I try to take every opportunity to learn. I will ask why It is offensive, I will try to never use that term again, and afterwards I will feel that I am a better citizen of the world for it.
I feel that the comments about my appearance come from the intersection of being a woman with a disability. People don’t generally care if a dude’s hair is carefully coiffed, and they are far less likely to give two figs about what he is wearing. Though I still appreciate a dude would deal with comments about his smell, and wearing pyjamas in public, the full force of the experience wouldn’t be there. Some of the worst comments I hear come from women, usually young women, who have thoroughly been brainwashed into this idea of what a woman should look like. This isn’t a men being bastards situation, but it is an example of how the patriarchy infects us all.
So, after all that rambling, I want to ask society to take a step up, try to look at the world from someone else’s situation as much as possible, do not judge what you don’t have personal experience of, and listen and ask polite questions of those you have offended. Don’t mock privilege checking because when you do you further a society that supports abuses, exploitations and cruelties, you support a world of inequality. You support people like me, being abused for doing our best to go out with our families despite having health problems that make it exceptionally difficult. And should you see me out and about in all my “dragged through a hedge backwards” finery, give me a smile, not a smirk, and teach your children to treat people the same way.