Tuesday, May 27, 2014

The day a stranger tried to interrogate me about my womb, sex life and disability while I was having lunch with a friend

Last week I had a somewhat unsettling experience. I am still trying to come to terms with it, and usually writing about it helps me to figure things out.
I had lunch with my friend Oline, and as we both had been to New York during the last few weeks (New York Crip Advisor coming soon!), we had an animated discussion about our experiences in the city.
Suddenly, a guy at the table next to us barged in, without any invitation from either of us – I hadn’t even noticed him sitting there. He was an ordinary, if slightly dishevelled looking, guy in his 60s, with an Eastern European accent.  “You from New York?” he said, and it was clearly directed at me. “No, I’m from Switzerland,” I said, slightly perplexed. The way he interrupted our conversation felt intrusive, especially as I hadn’t seen Oline for a few weeks and we had so much to discuss. “Ah, you like it better here than in Switzerland?’ he said, in the same slightly brusque manner. At this point I was wondering whether he was trying to hit on me, so I responded that I liked both, and that my husband is British.
He looked at me, assessing me, from top to bottom. “You have husband?” – “Yes.” I became perplexed and to find the situation slightly ridiculous. “You are married even though you are in a wheelchair?!” – “Yes” “Really?!” – “Yes.” I started to giggle nervously, because of the sheer ludicrousness of the moment. “It’s great that you are married even though you are in a wheelchair. I am disabled and I have no wife,” he said, pointing at his leg, which was covered by the table. So far, I hadn’t noticed that he was disabled, and my annoyance that I felt with him, for judging me, for his curiosity, for only seeing my disability, now became conflicted, because despite all of this, I felt I should feel solidarity with him as a disabled person, and empathy for his loneliness. Nevertheless, I didn’t like how he reduced me to my impairment, and how he assumed all disabled people had the same experiences as he does. Many disabled people I know are in relationships, while others are happily single out of choice, exploring their options, so I responded to him that in my experience, being disabled and being single always correlates. He bluntly responded “Oh, I think it does! Do you have children, too?” – I should have ended the conversation right there and then, but he caught me off-guard, and again, him being disabled too somehow made me feel that he deserved to be responded and to be acknowledged, even though something inside me warned me about his intrusion. I nervously giggled even more and said “not yet”, to which he responded “Ah, can you have children? Is it possible, you being in a wheelchair??” “I don’t know…” I said. He started babbling something which I couldn’t understand fully, but I think he assumed from what I told him that I never had sex before (LOL) and felt the need to comment on that. I felt confused, shocked, surprised. Why did I let a complete stranger corner me like that, why did I even answer him?! Luckily, at this moment Oline interrupted: “We are having a private conversation here, please respect that,” she told him.
That was the last time I looked at him. From that moment I focused on Oline and tried hard to shut him out, to change conversation, and shortly after he left the café, without me even noticing. I was overwhelmed and angry with myself. Why did I let that happen? Usually I don’t have a problem telling strangers to sod off when I feel they are being intrusive. However, their intrusion usually comes from a place where they are curious about disability because the know very little about it. This man, however, felt like a spectre that had come to haunt me with my deepest fears, to confront me with my own moments of loneliness, with the internalized oppression that so many disabled people struggle to shake off. The rest of the afternoon I felt spooked, and very confused.
Yet, he was also a man, a stranger, who felt he could pass judgement about me as a woman and about my womb, to interrogate me without my permission, completely uninvited. I feel that it was not okay for him to violate me like that under any circumstances. Yet I also wonder whether we, as a society, are responsible for letting things like that happen, letting people like this man to become so lonely and isolated until they find no other outlet, no other space to discuss their loneliness, than by taking advantage of unsuspecting strangers. But part of me also knows that there are safe spaces and services, even if they are rare and imperfect, where he could have taken his unhappiness, instead of imposing it on unsuspecting strangers. All I know is that I felt violated and deeply unsettled for the rest of the day, and if something like that ever happens again, I will protect myself better.

Wednesday, April 16, 2014

Hamburger Queen: Where fat politics and disability politics meet – and have a party!

I wrote a new blog post for Disability Arts Online about fat politics, disability politics and my experience of winning Burger Queen in 2011, a beauty pageant for fat people that is now in its fourth and final run.
Read it here: Hamburger Queen: Where fat politics and disability politics meet – and have a party! 
To learn more about Hamburger Queen and to buy tickets, go to http://hamburgerqueen.co.uk/ !

Friday, April 11, 2014

Feeling vulnerable

Two days ago, I was on my way home, crossing the street, when suddenly I felt someone pushing my wheelchair. If you are not a wheelchair user, it is probably hard to imagine what that feels like. It is startling – suddenly, someone else is governing the way you want to move around. It wasn’t a situation where I was struggling and in need of help. I didn’t ask anyone for help, not even with my eyes. Yet, this middle-aged white man feels that he can impose his charity on me and invade my personal space. You might not be surprised to hear that this happens a lot, and that it is usually middle-aged white men who I find behind me, grinning benevolently, while they fondle my wheelchair handles.
Still, I feel startled every time. Of course, there is and acute sense of danger: What if this person steers me somewhere I don’t want to go, or snatches my bag while pretending to help me? Then, it is also incredibly patronising to assume I cannot cross the street myself. It is also dangerous to violently force me to interact, while actually crossing a busy street. “I don’t like this” – I shout at him, with an angry look. He looks at me, puzzled, insulted. As I try to wheel off, he comes after me. “You didn’t need to be rude, I was just trying to help!” – “I didn’t ask for help, and you need to ask someone before you do that”. He clearly doesn’t understand, and gets angry. “You don’t have to be so bloody rude when someone is trying to help you!” – “Rude?! It is rude to touch a woman without her permission!” Now he looks even more confused, angry and aggressive. But he leaves me alone. For him, that is not what happened. To him, I am not a woman (or was I?) – maybe I am a child, a charity case, an invalid, certainly not someone who has a right to autonomy, to personal space, to move freely in my own rhythm.

Then, a day later, a similar incident happens: I am running late and decide to take a cab from Aldwych to Vauxhall. The cab driver seems friendly enough first and gets the ramp out without grumbling. But then he says: “When you’re in, I’ll turn you around and strap you in”. I am offered a bit of bondage, right there and then. Lovely! I decline and tell him that I won’t need my wheelchair to be strapped in, that I’m fine just holding onto the safety handles inside the car. He seems ok with that, but as soon as he starts driving, he begins to lecture me about how he’ll have to drive carefully because of me, and whether I am aware that there is a “correct position for wheelchair users” in cabs. I respond that I am aware but that it isn't the correct position for me, and try to change the topic. He does a little rant about another costumer, but then suddenly blurts out: “So, what’s your disability?” I feel my skin crawl.
I don’t mind it if strangers ask me what it’s like to move around in a wheelchair in a specific city, how I navigate buildings, public transport etc. But why do so many people feel the need to diagnose me? What does the name of my disability even tell about me? I have been friends with people for years without them asking about my disability. Sure, sometimes it would come up in a conversation; sometimes I bring it up myself if I feel like it somehow contributes to the conversation, to their understanding of me or my disability. It’s not that I feel uncomfortable if people know. But why does a stranger feel the need to know – why does it have to be the first thing he wants to know, before he wants to know about my job, where I live or about my husband or family? My does he feel the need to reduce me to a medical diagnosis that says nothing about the way I live my life?
“What do you mean?” I ask, pretending to be naïve. “Umm…did you have an accident?” Yes, the other day I accidentally grated my finger instead of the cheese. Do you mean something like that, dude? But the witty or assertive comebacks that I usually have ready do not come easy this time. I say “no” and then stare into my phone for the rest of the journey, while he eventually starts talking about something else.
The thing is, I need this man’s help to get out of the car. I am vulnerable, completely at his mercy. If I am acting, in his eyes, ‘rude’, it might compromise my safety or dignity. There is no one else around who I can look to for support, it is just me and him, and he is calling the shots, even though I am the paying costumer. I feel angry at myself for not telling him how incredibly rude, invasive and objectifying his behaviour is, knowing that he will probably act the same way with the next disabled person who shall be so lucky to be his passenger.
In both situations I felt violated, as a human being, as a disabled person, but also as a woman. Does my gender somehow make it easier for those men to patronise me, to disrespect my personal space? Or would they have done the same if I was a disabled man – do experiences like this feel even more humiliating to disabled men? Or just different? I have had countless similar experiences with women, where they imposed their ‘help’ on me or wanted to know ‘what’s wrong’ with me. I get just as angry, yet the power dynamic often feels somehow different. I feel more annoyed, less scared, don’t have such an acute sense that I need to protect myself.
I know that those situations usually happen because, when people see me, they are confronted with their own humanity and vulnerability. They need to know ‘what happened’ to me, so they can frame it in narratives that are familiar to them, but also tell themselves that the same thing will not happen to them. They need to help me to assert themselves of their strength, their health, their invulnerability.  Yet, it is not my impairment that makes me vulnerable, it is their invasiveness, their disrespect, their intrusion.

Sunday, December 1, 2013

‘You can heal yourself with my cuddles’ – my weekend on Tinder, Part 2

This is the second part of my Tinder experiment - to read part 1, click here.
Saturday: When I wake up and check my phone, I have 11 new messages, one of them telling me that I got a ‘sexy look’ – just what you need to hear after a night of white wine, Kirsch and cheese fondue.
Jean-Claude*, who already started talking to me yesterday, finally has given me an answer as to whether he minds that I’m in a wheelchair: ‘Not particularly, it’s not contagious, right? ;-)’. No it’s not, Jean Claude, love your sense of humour, babes.
George, a silver fox in his 40s and quite attractive, is continuing the flirty exchange we had yesterday. He calls me ‘red’, which makes me feel like Joan from Mad Men. Meanwhile Jason, 35, just wants to make me ‘cum’ but again he doesn’t mind that I’m in a wheelchair. I politely decline.
I spend way too much time on Tinder, yet again, liking another 50 guys or so – and all of that before breakfast. After I have taken a shower and feel slightly better – that is until I see Jaric’s  (37) message: ‘Can I ask you something?’ He obviously really does want to, because he didn’t wait for answer. ‘Why are you in a wheelchair?’. I ask him why he wants to know. ‘Are you paralyzed?’ ‘Do you live alone?’ ‘Do you drive?’ I didn’t realise they are doing the ATOS assessments now via tinder. I ask him why he cares so much and is trying to assess me, and he tells me he is not, but just trying to figure out whether we can meet. ‘You can heal yourself with my cuddles!’, he promises. Better go and heal yourself, dude. I might hit you up again when I have a cold.
This would have almost put me off Tinder for good, were it not for Carl, 30 a Scotsman who recently moved to London and looks a little bit like my husband (handsome!). Via Tinder, we discuss the Scottish independence, and while we’re at it, women’s rights and abortion. Carl is one of the few guys I started talking to first. Eventually I tell him that I am on Tinder for research, and as him about his feelings about my wheelchair. He says that he didn’t notice at first when he ‘liked’ my picture, but when I started talking to him he checked my pictures out again and noticed, but, in his words, it ‘didn’t phase’ him. We now follow each other on twitter. Due to my conversation with Carl, I neglect George, the silver fox, a little bit. ‘What are you up to next weekend, Red? Would you like to meet?’ He does not mind that I’m in a wheelchair and does not stop flirting after I ask him about it, so he must have noticed from the start. They are actually decent, attractive men on Tinder who want to go on dates with me!! When I tell this excitedly to my husband over coffee, he just gives me a blank stare. ‘Why wouldn’t there be?’ For him it is normal that guys would find me attractive – he married me 2 months ago, after all. I feel a bit stupid and ungrateful after that, and go easy on the Tinder for the rest of the day.

Sunday: I decide the Tinder experiment has got to come to an end. I start by confronting all the guys I have been chatting to with my disability. Sunday morning is as good a time as any to ponder whether you would hook up with a lady on wheels, right?
Andre, 33, who is looking for ‘no-strings-attached fun’ has not noticed I’m in a wheelchair, even after going through all of my pictures, but he says he does not mind because I got ‘a pretty face’.  Toby, 38, who is clearly looking for a girlfriend, also didn’t notice. As soon as I tell him, though, he starts googling places with good access for dates. Bless his heart.
Simon (37) didn’t realise I was disabled, but when I ask him about my disability he openly tells him that he wouldn’t have flirted with me if he had noticed my chair and that he cannot bring disability and sexuality together. Oh well.  Chris, 30, meanwhile has a different issue. He chats me up, saying ‘I like your necklace, like your wheels, love your hair but your tag line sucks.’ What’s wrong with a Cher lyric?? A lot, apparently, and he tells me that Cher has not released a good song since ‘If I could turn back time’. Babes, please! The banter between us goes on for a while, but does not lad anywhere – as is the case with many Tinder conversations. I decide to change my tag-line from the non-descript Cher lyric to ‘She-Devil On Wheels’ – not because Cher’s ‘Woman’s World’ is not the best song I have heard all year, but because I wonder whether it changes anything if I hint at my disability in the tag-line. Apparently not. I do notice however that the guys who are interested in ‘real’ conversation, not just super speedy hook-ups, tend to notice my wheelchair (and generally do not seem to mind) more than the other guys.
A good example for this is Aaron, in his 30s: He tells me that he noticed the wheelchair after the match, before he messaged me. He says what first caught his eye and made him ‘like’ me was my red hair, my ‘geeky-artsy vibe’ (thanks, I guess?!), my skin and my cleavage. Fair enough. At first, he thought my tag-line was a reference to a B-movie or roller derby (Whip It, Aaron!). We continue talking for a while – we have a shared facebook friend who we both do not know very well, but we soon find out that we have more in common. I quickly tell him that I’m on Tinder for research, but he keeps on flirting with me in a subtle, gentle manner and still wants to meet me. I politely decline and tell him that I am married, which, like all the other guys on Tinder, he takes really easy (apart from one guy who scolds me: ‘Do not waste people’s time, Nina!’). However, we are now friends on Facebook now and had some interesting conversations about the advantages and disadvantages of Tinder. As a guy, apparently, it is not very easy to get any ‘likes’ on Tinder at all if you do not look like James Bond. Not even my advice, to choose a profile picture where he is holding a cute pet helped, apparently. Personally, I ‘liked’ every guy who posed with a puppy and even started talking to most of them – never underestimate the power of puppies! While for me, Tinder was mostly a massive ego boost, if I were a guy, it might have been the complete opposite.

never underestimate the power
of puppies!
It was very refreshing for me to be not reduced to my wheelchair – when going out, it is quite often the first thing that people notice (which, I guess, partly explains my penchant I developed in my early twenties for big skirts, glitter and sparkly handbags: Notice something else, already!!). On Tinder, if you are female and have a fairly regular looking face, you’re good and it’s a wonderful little tool to play with, to keep you entertained and get a nice little ego kick out of. It really surprised me that for the majority of guys, my disability did not play a role at all. I do wonder why some many guys did not notice I’m in a wheelchair: An assumed nondisabled identity seems to be a given in the world of online dating, just as much as when I was 15 years old. While some guys just do not seem to engage properly with the profiles of the people they talk to, some seem to actively block the wheelchair out.
My biggest surprise on Tinder, apart from its strange addiction-forming power, was that about half of the guys seemed to be interested in real conversation, a date and not just a quick hook up – it seems slightly less sex-obsessed that Grindr, although there might be regional differences with Tinder (I heard the New York Tinderers are quite dodgy). At least in theory, the basic profiles lead to objectifying, but more so of faces than of bodies.  Personally, I found it a positive experience, although slightly addictive, and I have yet to hear about a relationship that was formed via Tinder. But then, crazier things have happened and there are some really decent, handsome and smart guys on Tinder – I wish them the best of luck.

*All names of Tinder guys changed.

Friday, November 22, 2013

‘You can heal yourself with my cuddles’ – my weekend on Tinder, Part 1

A few weeks ago, the fabulous Stella Young started a discussion about Tinder on facebook. Tinder is the dating app du jour, and has been touted as the Grindr for straight people – a hook-up tool, basically. In her post, Stella, who is single, wondered what the Tinder experience would be like for herself, a wheelchair user, but could not quite bring herself to give it a go – she was too worried to attract creeps or to ‘bump’ into someone she knows on Tinder. This is possible, because Tinder matches you with people who are within a certain radius from each other, and, as you use your facebook profile to log in, also shows you mutual facebook friends or facebook likes.

As a newly-wed who isn’t that bothered anymore how many creepy guys are out there, or about guys who might reject me because of my disability, I decided to act as a guinea pig for Stella. One of my PhD chapters focuses on disabled burlesque artists, after all, so I am very interested in attitudes towards sex and disability. Way back when I was 14, I met my first boyfriend in a chat room (gosh I’m old) so I had some experience in online dating. I remember vividly how my-teenage self was in anguish every time I revealed my disability to a guy online – often after weeks of talking. Tinder is hugely different to those chat rooms: You get to flip through lots of pictures of the sex you are interested in, and press ‘like’ if you find someone attractive, and ‘nope’ if you don’t. If you want to, you can also read the person’s ‘tag line’ (quite often something very impersonal, such as ‘Don’t be shy, talk to me’ or ‘Your move’) or see additional pictures, but in reality you only engage minimally with those people at this point, and quickly move on to the next person. If you ‘like’ someone and they have ‘liked’ your picture too, you get a notification that there has been a match, and you get the option to start chatting. If someone does not ‘like’ you, you are unable to contact them and vice-versa, so in theory Tinder is very efficient and does not make you feel rejected. As all your matches live or work relatively close to you, it is then quite easy to arrange date, if you wish to do so. But how does Tinder work for people who are disabled? I was determined to figure it out, and so I spent a weekend on Tinder – with permission from my husband, of course.

Friday: I carefully choose the pictures to set up my Tinder profile. They have to fulfil three requirements: a) not make me look like a troll, b) show that I’m in a wheelchair and c) not have my husband in it or show me in a wedding dress. This proves to be difficult. I want it to be obvious that I’m in a wheelchair, but at the same time I don’t want the wheelchair to be the primary focus. Eventually I find three I can use – in all of them parts of my wheelchair is visible, but they also show off my face, my hair and my, erm, cleavage.
My Tinder profile picture
As I am flicking through the first 20 pictures or so of guys, I am positively surprised how attractive most of them are – this clearly isn’t an App for the desperate. I make sure I ‘like’ a wide spectrum of guys: Ones I find genuinely cute or interesting looking, and also ones that seem creepy, desperate or funny, judging from their picture. Within seconds I have about 10 ‘matches’, and I find it amusing and strangely addictive to flick through dozens of pictures, but I’m a bit confused – if all those guys like me, why is no one talking to me? I decide to be bold and say ‘Hi’ to two of them. Nothing. Stella informs me that her Tinder-savvy friend ‘NEVER’ makes the first move but waits for guys to talk to her, so I flick through some more pictures, ‘like’ another 50 or so (about half of the guys who come up), and then do something else for a bit.

Tinder is set up like a game – after you have been matched with a guy, you get the option to either start chatting, or to ‘continue playing’ – and what you play with are the profiles of other people, and their pictures. Tinder is extremely objectifying, but I wonder: As it only allows someone to approach you who you have objectified too, reduced to their profile picture, does this make it somehow okay?

I have a brief moment of 'uaaaaargh' when I come across the profile of an ex-boss of mine. His profile picture is a bare-chested selfie, where he is sporting his usual smug grin. His wife and children are not in the picture, of course. With some other guys I seem to share a mutual facebook friend here and there, but it doesn't bother me. I wonder whether it would bother me more to come across aquaintances if I was on Tinder to actually get a date, not just as a social experiment. I guess the same principle applies here as does to Grindr: The people you come across on it have engaged in the same act as you have, so you should feel equally ashamed, or both not ashamed at all. I also don't see why there should be so much stigma attached to it - Tinder seems like a relatively safe way to engage in what thousands of people do in clubs and bars every night. If anything, I think the facebook connection add a false sense of security - if I can, at least in theory, easily look this person up, and if this guy even is friends on facebook with that lady I once met at a gig 3 years ago, how dangerous can he be?

After about half an hour, I have about 5 guys talking to me. One of them greets me with the words ‘you are exquisite, Nina’. So far, the tinder experience is certainly soothing for the ego. Two of the guys I am talking to seem very eager to hook-up and suggest a blind date during the weekend. Both of them are roughly my age and fairly handsome. Dan* works in the city and our talk mostly consists of sexual innuendo, disguised in a conversation about coffee. Unfortunately he does take it all a bit too far when he compares his love-making skills to an extra-shot latte. Good luck with that in the future, Dan. I initially agree to meet Dan, and also agree to meet Josh, who is roughly my age but a bit taciturn. But all of this seems a bit too easy – neither of them has mentioned y disability with a word. Has our society changed so much since I am not on the market anymore? Am I that old? Has dating turned into a level playing-field? Become crip-indifferent? When guys have approached me in real life to chat me up, in at least 50% of the cases my wheelchair or disability comes up within the first 15 minutes, and I tend to be reduced to my disability. On Tinder I get reduced to my face (which apparently is 'nice' and 'sweet', according to some generous Tinderers), and my hair, specifically my fringe, which apparently classifies me as a 'vintage bird'. Oh brave new world, where my hair and my disability are of equal interest!

Another picture on my Tinder profile
Unsatisfied with the results of my ‘research’, I ask both of them: ‘Do you not mind that I’m in a wheelchair?’, and for a very brief moment, I feel 14 again. This bittersweet moment is interrupted with a message from Dan, saying: ‘No I am presuming that doesn’t inhibit coffee drinking, or anything else other than walking/stairs? ‘, and a minute later Josh informs me that he hadn’t noticed, but that he still wants to meet me, and am I free tonight? I rejoice at these indifferent attitude towards my disability, and dutifully inform them that I am married, on here for research but really grateful for their time. Both of them take this, as well, incredibly easy and wish me a nice evening or good luck with my research. During the next few hours, I have a few more contenders, and a remarkable amount of guys does not seem to register that I’m in a wheelchair. One guy stops talking after I ask him whether he minds my wheelchair, while two more ask me more or less directly whether it inhibits sexual activity, and when I answer in the negative, they are as keen as ever.

A very different experience I have with Conrad, who is 52 (and certainly not in the attractive/interesting looking category): Almost straight away, he tells me how great it is that I don’t let my chair ‘cramp’ my ‘style’. When I ask him what he means, he waffles on, saying that ‘it would be easy to let it define’ me so ‘it’s great’ I don’t ‘allow it to!! Thumbs up, smiley!!’ When I tell Conrad that his view is slightly ridiculous and offensive, he doesn’t get it, just as he doesn’t get the irony of what he says. Whatevs, on to the next one – Mike, 33, who greets me with a simple ‘Wow!’. At this point I am starting to feel strangely addicted to Tinder, so much that my husband, who is usually the most patient, sweetest guy in the world, is getting angry and tells me off, so I shut off my phone for the night. Grumpy husband aside, I really like Tinder and the ego boosts it seems to offer so far.

Check back for Part 2 of my Tinder experience in a few days! Have you been on Tinder? If so, how do you like it?

Saturday, January 12, 2013

My blog has moved...

I have started doing a blog over at Disability Arts Online about disability in the media and culture.

So far I have written about:

 - The blind cook Christine Ha who won Masterchef US

- How an online magazine mistook Viktoria Modesta's prosthetic leg for a fashion faux pas

- and how Channel 4's show 'Undateables' is inspiration porn at its worst

Since I am doing all my disability related writing there, and still write regular articles at Love My Dress about my wedding preparations, this blog inactive.

See you on DAO or on Love My Dress!

Friday, October 5, 2012

Going to the chapel and we're...

This is just a quick personal post to announce that my boyfriend Bobby has asked me to be his wife, and I said yes.

I am really over the moon and very happy and excited. We will get married in about a year, which gives me just enough time to plan my big fat crip wedding.

I might need the help of Franck the wedding planner soon!

It is only when I got engaged that I became interested in weddings and wedding planning, and I was surprised to discover that there is a whole world out there of all kinds of websites and blogs about weddings, alongside with many glossy bridal magazines. However, I quickly discovered that many of those cater to a hetero-normative, non-disabled audience (just like most women's magazines do). During the first week of wedding planning I realised that there were many access-specific things I had to think about, and that planning an accessible wedding would be a huge learning-process for me.
I then got in touch (via a friend of a friend - thanks Emma and Daniella) with the lovely Annabel, who has a hugely successful wedding website called Love My Dress, and she invited me to write a series of articles, one each month, about planning a disabled wedding.

The series is called 'Confessions of a Disabled Bride', and I hope it will not only be useful for disabled brides and grooms, but also for engaged couples that have close friends or relatives that are disabled. My first post is now up on Love My Dress, and it's about my engagement and questions to ask wedding venues if you want to find out about their access.

I am really grateful to Annabel for giving me this opportunity to write about this, and I hope the blog will spark some discussion or food for thought.

I looked much more excited than this when Bobby put a ring on it!