[CN: abusive parents, disability shaming, fat shaming, mentions of weight.]
I got an email from my mother last week, after we met for a coffee last Friday. It was the first time she had seen me using my powerchair and, looking back at the suspicious lack of comment, I guess she was saving her opinions so not to spoil the afternoon.
So the email came. Usual niceties “lovely to see you”…. then:
However, seeing you in the electric wheelchair, I can’t help feeling concerned about your well-being.
Followed by some information copied and pasted from the official EDS-UK page about how important exercise is.
I had to close my laptop before I wrote the email I wanted to reply with. It’s taken me up until now to feel like I can even write it as a cathartic exercise. I’m still not sure I’ll be able to send an actual reply without putting some sort of barb in there. Her attitude towards my newly-rediscovered mobility isn’t exactly a surprise; she has a long history of dismissive behaviour when it comes to my health, especially things which are visible. Here are a few notable examples:
- I pulled tendons in my racket arm during a PE class when I was 13. That weekend said we could go out for a meal (a rare treat)….but only if I removed my sling.
- A bad concussion the next year, via an accident in drama class, was dismissed with “just sleep it off”, although the school nurse had told her to take me to a doctor. I spent the weekend groggy on the sofa.
- When I was 15 she gave my knee supports away to a friend’s daughter.
I suspect my childhood list only ends there because I stopped living with her when I was 15. I’m not even going to get started on the mental health stuff. That’s a whole other barrage of awful (“I think I’m depressed.” “Don’t be so silly.”). In adulthood it hasn’t gotten much better. I lived with her for a brief while after uni; on more than one occasion she barged into my room in the early afternoon, pulled my covers off, screamed at me to get up, to stop being such a lazy bitch. I didn’t have a diagnosis at that point, but tried to explain that it wasn’t just “being tired”. She shot back with “I’ve had two children under five, I was tired but I got up”. In my imagination I shout “BUT YOU COULD!” after her. Now I do have a diagnosis, I’m not a “lazy bitch” anymore, at least out loud.
So here’s the email I wish I could write.
Thank you for your email expressing concern over my newfound ability to leave the house whenever I want. However it has raised some questions for me which I hope you can answer.
Are you embarrassed to have a disabled child?
Because that’s how it’s coming across – that it’s fine for me to have this condition (that you never bothered learning about until you could try and use it against me like this) as long as it’s not visible to others and especially not when I’m with you.
Why the concern now?
Was it not concerning when I was unable to leave the house for weeks at a time?
And if not, was this because at least I was being disabled out of the sight of others?
Why is my weight gain more concerning than my ability to leave the house?
(You are aware that I became exercise-intolerant long before I got the powerchair, right?)
I hope to hear from you soon.
Love to you and [insert name of current partner],
That was far politer than I had intended. I can’t even unleash the fury on a vaguely-anonymous blog. In my head I’d made a huge list of things that were not “concerning” which had a far greater impact on me (such as when I told her my dad was physically abusive and she told me it wasn’t illegal so she couldn’t do anything) – but gain a stone and THAT’s cause for concern.
What I will write will probably be polite, terse, and contain a link to something about the detrimental effect of exercise on exercise-intolerant patients with chronic fatigue. No questions, no accusations, maybe a “you’ve never been in my situation so stop judging me” at the worst. I wish I could send the one up there, but I’m scared of the reply. I’m embarrassed that her opinion can do this to me. Every time something like this happens I come closer to just cutting her off.
When I deactivated my Ask.fm account over a year ago, in the face of multiple unpleasant messages (messages! not even questions!), I had naively assumed that the anonymous abuse would stop. I guess I forgot I had a blog.
There was the usual stuff about being fat, ugly, faking my disability yada yada, but in the blog comments there is also something quite specific to people who rely on state support to get by: money policing.
People who claim benefits are frequently subjected to scrutiny from the general public about where “their” (the taxpayer’s) money is going. Just look at comments on certain newspaper websites (or don’t, please don’t): any article about a family on benefits will have reams of comments underneath policing all aspects of their life from the flatscreen television to what they got their kids for Christmas, or their new-looking trainers, and whether the parents smoke or not. No one seems to point out that it’s more than a little difficult to get a cathode ray TV these days (never mind the fact that there’s no analog network any more), or that these “luxury” items are often purchased on credit, or with the help of an unscrupulous doorstep loan company. It’s not proof that benefits are too generous, it’s proof that even families in poverty want their kids to be happy on Christmas morning despite the cost, or to have the same as their more well-off peers. And the smoking? This seems to propel the commenters into an authoritarian frenzy; pre-paid “benefits cards” are a popular suggestion, redeemable only at supermarkets for “worthy” goods. Can you even imagine the exploitation possible here? Will one lucky supermarket chain will be chosen for the DWP’s partnership? What happens if a claimant is vegan, or coeliac, or doesn’t live near a supermarket, or is disabled and relies on home delivery (because I bet they wouldn’t let you use them on Ocado)? Not to mention the other things that people need aside from food: clothes, replacing broken appliances, kids’ toys….are tampons too much of a luxury? What about medicine? The bus fare TO the supermarket?
This brings us back to the problem of the public deciding what is a “worthy” use of “their” money. A cheque sent by my gran when I went away to university specifically had “not for raves” written on the back, but benefits aren’t a benevolent gift, they’re a payment that doesn’t depend on kindness but on eligibility. Once that money is paid, it belongs to the person who holds it in their account. But that doesn’t seem to stop members of the public weighing in what should and should not be done with it.
My luxury purchase (bought entirely with “taxpayers’ money”) will be a powerchair. A brand new powerchair because it’s the only one that will fit into the flat without removing the door-frame (and I’m definitely not allowed to do that). I had most of the money from a benefits backpayment but I needed help to raise the last quarter, so I set up a GoFundMe page (now closed, I met my target within 2 weeks).
It’s then that I realised someone was either on my Twitter or Facebook scrutinising it for things to complain at me about.
Despite the accusation, I know I am not in poverty – not any more. Before January I was living well below the poverty line and had been for almost 2 years. Before I was approved for a travel concession I would exacerbate my condition by walking instead of taking the bus, so I could afford food. My own mother kicked me out because I couldn’t afford the tiny amount of rent she charged me (maybe I should have skipped the food?). I am well aware of how lucky I am to have a stable financial situation now, but the commenter seems to be shaming me for spending the money I now have.
It feels very strange to have to point out that seeing “The Manics” (twice) is costing me under 1/100th of the amount I put aside for the powerchair. That is an amount of money I can afford. I couldn’t (and still can’t) afford the target I set on the fundraiser within the time that I need the chair by. I don’t get how that’s hard to understand.
The more I catch myself justifying my spending the more I get angry with both myself for feeling like I NEED to justify it to the anonymous arseholes, and with the scrutiny that benefit claimants get over their spending in general.
Or even their future plans:
(no I’m not writing my own abusive comments – they just seem to lack imagination)
Heaven forbid I leave my flat and go out further than the nearest coffee shop, right? Oh, what? Coffee’s a luxury?
THIS is the problem with money policing. It starts with “no frivolities” and ends with “the bare essentials only”. Benefits don’t work that way. The DWP doesn’t calculate the bare minimum each individual needs to survive and award them not a penny more (though you could be forgiven for thinking that’s how it works). I realise I’m pretty lucky for someone in my situation. I’m not being charged for household bills, which means I have extra spending money (though I’ll happily forgo this in order to live somewhere actually accessible). I also have a part-time job under the permitted work scheme which the commenter doesn’t seem to have noticed me “regularly posting” about (which I do post about, because man I love grammar).They also haven’t noticed that before my benefits came in, after 18 months of waiting then the stress of an appeal, I didn’t do many of these things unless it was through my partners’ or friends’ generosity. Now I do have the benefits, I’m being policed over how I spend the money I am entitled to. I can’t win. This blog post might as well be called “The Pointlessness of Justifying Yourself to People”, and I might as well end by saying, loudly:
What I spend my money on is my business and no one else’s. People who aren’t on benefits don’t have to put up with this money policing crap and neither should we.
We need to talk about something faced by disabled people every day: the attitudes of strangers. Not remarks, not discrimination, but the silent stares.
There’s no question that everyone gets judged on their appearance by those they pass in the streets. Something that makes you stand out will attract attention be it crutches or a strange hairstyle. I’ve been there pre-disability: bright obnoxious pink white and orange woollen dreadlocks paired with multiple facial piercings. Then I revelled in the stares (two fingers up to society? oh teenage me), but now when people look at me struggling to walk with crutches, hiding behind nothing, it feels like the stares are piercing my skin. I attract attention for the “wrong” reasons, those beyond my control, yet I feel no pride in my appearance now. There’s nothing worse than passing a chattering group of friends on the tube platform, for them to go silent, watch me pass, then start up again in hushed tones once I’m out of earshot.
On a Facebook-based support group the other day, I saw a woman ask why so many of us posting have negative or angry responses to strangers asking questions about our crutches or wheelchairs. She suggested that we should embrace the questions, and use it as a chance to educate people about a debilitating and under-diagnosed condition. This met with a mixed response from the rest of the group, and sowed the seeds of this post in my mind.
Ideally, if a stranger approached me and asked me “Excuse me, do you mind me asking why you walk with crutches?” I would give them a polite, concise but informative answer. But that is of course just hypothetical – they DON’T tend to ask that question. I get “What’s wrong with your leg/legs?”/ “What happened to you?”/ “Aren’t you too young to be disabled?”. None of these require acknowledgement, let alone dignifying them with a response (although I did once end up getting a major charity’s entire street-fundraising team retrained in their appropriate opening gambits, of which “Woah, what’s up with your legs?” is NOT one).
And if the hypothetical polite and considerate question is asked? I am probably not in any mood to answer it. And here’s why:
I call it the Triangle Of Doubt. I experience it almost every time I go out. Their eyes go first to my crutches (disabled!), then my face (young!) then my legs (not broken!) and around again, the frown becoming deeper. Something doesn’t add up there. They try to work out which bit is wrong. Too young to be disabled? Faking? Fashion accessory? Benefits cheat? Should she be out alone?
What this mostly amounts to is I get frowned at by strangers who’ve been staring at my legs. And it adds up. I end up trying to avoid eye contact.
So, usually by the time someone comes up and asks me a polite question about disability, I have had x-number of the above microaggressions and my patience has run out.
Generally I really dislike being asked about disability when I’m out in public by complete strangers who only want to satisfy their own curiosities*, but I’m happy to educate people about Ehlers-Danlos syndrome and chronic pain over the internet, but in my own time and when I’m able to, but this is the key point: you cannot demand personal information from people and expect to be given all you want then and there. Disabled people may be dealing with chronic pain, exhaustion, and the effects of strangers’ attitudes and even politely asking could be upsetting or met with a snappy response. Consider this next time you feel entitled to approach a stranger for details of their life. Although you might be lucky and get one of the small percentage who don’t pick up on the microaggressions.
And, for the record, the correct response to “What’s wrong with your legs?” is “What’s wrong with your manners?”.
*exemption given to medical professionals because EDS is really undertaught and we often have to be our own experts and teach our own doctors!
Oh blog, I had such hopes for you. I will write once a week, I promised myself. Even if it’s just sketchy poetry. Then a fatigue crash happened in late December and I currently struggle to piece two coherent thoughts together one after the other, and don’t even try linking them eloquently. I will come back to this properly, it might be a winter darkness thing, or it might be the Mystery Heart Condition or just “hey you have chronic fatigue, this is just what you do”. But I’m not abandoning this one, even if I’ve already taken a small leave of absence.
I’m here today to rage about insidious sexual harassment.
It’s not easy for me to leave the house right now. It requires forward planning: estimating my energy levels, timing painkillers correctly and working out which of London’s many stations are accessible enough. I failed on the last front yesterday evening and found myself changing trains at Finsbury Park – which necessitated climbing a flight of stairs. I do not generally do well on stairs, it’s usually slow going and often painful and I’m concentrating hard on both coordination and not passing out. Still, I recognise the click of an iPhone camera when I hear it.
That’s a bit odd, I think, who would take a selfie on the stairs at Finsbury Park?
Then it hit me, as a man pushed up the stairs past me, with his phone in his hand, the screen still set to camera. That man has just taken a picture of my arse. Or up my skirt.
There is a control room at the top of the staircase where the North and Southbound passages intersect. I fully intended to be late to meet my friend in order to report the guy right then and there, but as I reached the top of the stairs I realised he was right there, leaning against the wall of the tunnel, looking at his fucking phone and I got so freaked out that I just got the hell out of there as quickly as I could manage.
Once I was at the pub with my friend, I couldn’t get comfortable for a long time. The idea that some stranger had taken a photo of me without consent for sexual gratification made me feel really gross and upset and anxious. It felt like a part of me had been taken without my consent.
I started fretting about going home and going back through the station, and eventually asked my friend to come back with me. Having him there made me feel brave enough to stop at the control desk and tell them what had happened earlier. They called the British Transport Police and we were taken to the station next door to make a statement. It’ll go down as intelligence, so they can build up a pattern of this guy if more people report him, if he’s a repeat offender for this kind of thing.
I feel the need to stress the importance of reporting even minor harassments such as this if you feel able to. The trend for photographing women without their consent is really disturbing – from numerous Facebook groups for posting pictures of women in nightclubs (“Sluts Embarrassing Themselves” famously took weeks to be closed), to Women Who Eat On Tubes (misogynistic AND food shaming!) and it’s totally media-endorsed – how can someone taking a photo of me be any different to a paparazzi photographer shoving their camera up the skirt of a young actress as they get out of a cab? We’re viewed as public property. We’re on show, so why can’t people take home a souvenir? I’m incredibly pleased that it’s being taken seriously by the police, even if it’s not a serious crime. It’s insidious, creepy. Most women who are photographed like this probably don’t even realise it’s happened at all – even when the cameras make noise it’s hard to hear when you have headphones in, or when there are lots of people around.
I’m just thankful that I probably won’t be travelling that way through Finsbury Park again, thanks to the stairs.
(It’s worth noting that up-skirt shots were apparently such a problem in Japan that you cannot silence the shutter click at all on Japanese iPhones, and there’s no in-camera mute function on any iPhone.)
(Bear with me for the vaguely disjointed writing style. Brain kittens are extra active today and it’s been difficult to keep a train of thought.)
With two recent headlines about disabled access to public services, the audit of shop accessibility and the wheelchair space on buses case, there has been a lot of talk recently in non-disabled spaces about the rights of disabled people (and what they should or shouldn’t complain about or campaign for).
On a discussion on a friend’s Facebook page where they posted up the latter story, a non-disabled person commented with something along the lines of “disabled people have privilege because there are special measures made for them” (not exact wording because my friend got upset and deleted the whole post before I could copy it).
I would argue that there is a privilege structure within the model of disability itself, but that disabled people as a section of society do not have privilege. Having special measures put in place, such as ramps to shops and a reserved area on the bus for wheelchairs is not a privilege but a means to access the same public services as the majority of the population. It’s not a privilege to have laws protecting you from being discriminated against; it’s a sad fact that these laws don’t seem to stop disabled people from being on the receiving end of abuse and anger from others anyway.
Disabled people are a protected minority and this affords us the privilege of being shat on from all sides. The government cut our services to save money instead of increasing taxation (only one hearing aid for bilaterally deaf people, cuts to local travel passes, social services care hours cut…), but try to focus the disenfranchised rage of the working class masses onto the disabled population by scaremongering about the amount of fraudulent disability benefit claims (as opposed to, I don’t know… MPs’ expenses?). In turn, disabled people are viewed as “scroungers”, “spongers”, a “drain on resources” by the rest of the struggling population. And if you are disabled and CAN work? Why are you even claiming any extra money at all then? If YOU can work (as a disabled person) then why can’t every other disabled person?
The link to the BBC news site’s article about the recent bus rulings is at the start of this ramble. I read the comments (never read the comments). Here are some (unpalatable) gems:
“If disabled people can do olympics they can wait for next bus. A child should always come first !”
– ah, the legacy of the Paralympics continues to haunt those of us with disabilities who are not also athletes (I believe that’s most of us)
“Whilst sympathising greatly with wheel chair users where will it end?”
– aka “i’m all for equal rights but they’re getting a bit too noisy about it now”
“Can’t they just use their mobility payments to use cabs?”
– not entirely sure this person realises that mobility DLA/PIP component is not really enough for an on-call chauffeur
Then there’s the usual slew of “but they get free cars” (I don’t think you understand how the Motability scheme works), “they wanted equality, this is equality” (no, it’s not. not when a non-disabled person could have gotten onto the bus and sat down – equality isn’t about everyone being treated exactly the same, it’s about giving marginalised groups the tools they need to achieve equality), “loads of people who use mobility scooters aren’t disabled just obese” (cause and effect mix-up here – when you can’t exercise due to disability or illness you do tend to put on weight).
And my favourites: “confined to a wheelchair”, “wheelchair-bound”, “stuck in a chair all day” *screams* that’s for a rantier post about disability binary that many people have already written much more effectively than I ever could.
But despite the “privilege” of having complete strangers being able to judge us on just about any aspect of our lives, from “helpful” dietary advice (no it will not make one iota of difference to my shonky collagen if I went gluten free) to whether we are REALLY disabled or not based on their extensive medical training and knowledge (which seems to trump any actual specialist opinion), we are a protected minority – like a flock of rare bats nesting in a crumbling old church that the council really wants to demolish but can’t because BAT PRIVILEGE.
And now I’m stuck on the bat simile and can’t write sensibly any more.