WHAT REALLY MATTERS: “I’M NOT HERE TO TEACH YOU ABOUT THE BIRDS AND MY NEEDS” PART 2

 In What really matters

…. “Online dating as a disabled woman” continued

Part 2 – Sally’s Experience

Why online dating, should I take the plunge?

I live in a bubble. It is a bubble that is slowly getting bigger, but it is a bubble all the same. I see the same people day in, day out. Some of them I’ve handpicked to be with me (my carers and friends), others I’ve had no choice in (my health care professionals, my family).

If, in a personality test, all of these people were the highest possible match with my own personality; I still wouldn’t want to date them. For starters, some of them are related to me, a lot are not of a gender that I am attracted to and a lot of them are paid to be with me.

Therein lies the biggest issue. I want to find someone who wants to be with me because they choose to be. Not because it’s their job, not because they are obligated to because they gave birth to me, but because they love me for me.

I want to wake up in Resus after a seizure or in ICU after intubation, to a face that desires to be by my side regardless of everything else going on in their world.

But how will I ever meet that person if I continue to live in that bubble? The bubble that is largely defined by my inability to leave my house, to go to social events, bars and parties or ‘hang out’ with a social group.

I am a young woman, full time wheelchair user who is chronically and severely ill. I have 24/7 care. That means I have a carer with me at all times. That’s not sexy! How can I anticipate private, intimate moments with my someone special if I’ve always got an entourage? How can I have encounters in romantic locations if I can’t get to them?

But these hurdles don’t affect my desire to find a partner. And if I’m not able to go ‘out’ to find them, I’ll have to get them to come to me. As has been the way for me for a long time, the internet has been my way of bringing things into my bubble from the outside world: My groceries, the clothing, and friends (albeit in virtual spaces). Perhaps finding a partner can be the same?
So that’s what I set out to do.

The ‘perfect’ profile

I had some work ahead of me; I had to decide on an app to use and write my profile. I tried a number of different apps but I specifically chose ones that weren’t solely based on looks followed by swiping left or right. I wanted to know more about each person, even if it was only the superficial and potentially fake facade that they had chosen to present. Similarly, I wanted to meet people based on who I was, on my characteristics other than simply looks, as do many young (disabled and non-disabled) women; “okcupid encourages people to actually get to provide more info about themselves etc.” says leg-amputee Belle.

I’m sure writing a profile is difficult for everyone, you’re basically trying to sell yourself as a great product, but it’s particularly hard when you have a serious disability. I set about writing a profile that really reflected who I am as a person.

The things that make me tick, the things that I care about and what I enjoy about my life. Basically, I wanted to clearly convey ME, but how much of who I am is that I’m a disabled woman?

Belle comments:

“On tinder I didn’t have my disability in my bio or showing in photos. At the time, I found it weird to put my disability in my bio or something because I didn’t see that as an important part of me”. She goes on to say “however, as a result I never met up with anyone from tinder because I’d start talking to someone and then realise ‘I kind of like this guy/girl’, but what if I tell them I’ve got one leg?”

I decided that actively drawing attention to my health problems wasn’t the way to attract people – who would choose a partner having a disability as a priority? Plus, I definitely didn’t want to attract fetishists! I got to the part where I had to choose photos for the profile. Obviously, everyone aims to present their best side so I wasn’t going to post any pics in intensive care, but what should I post? I am someone who can look quite healthy when feeling good and sat on an ordinary chair, but was that an accurate representation? I decided to go for a mix of photos in my wheelchair and sat down elsewhere.

Mainly, I thought that portrait shots were the way to go. I had never questioned myself so much. Was I as honest a person as I thought or was I entering into some kind of deception by not labelling my photos, “Caution: disabled woman!”? This begs the question; how much of my identity is private and how much is public? Because I’m disabled is the public somehow more entitled to know more about me and in so doing does my identity become publicly owned?

Another young woman called Danielle who is a wheelchair user also struggled with which photos to use in her profile and got as far as arranging dates but then cancelling them just beforehand as she explains;  

“I put a photo up of the top half of me, never of me in my wheelchair as I was embarrassed. I chatted to quite a few men but when it came to meeting up I used to cancel at the last minute as I got scared of the reaction I would get.” 

Felicity adds;

“There is the hope that if they got to know me they would look past the wheelchair [so] I tended to only use photos which were more headshots.”

I hit the button and my profile was live. The messages started pouring in and I cavalierly screened the messages from people who didn’t fit my criteria. This, in itself, seemed cruel, rejecting people without ever talking to them. I asked myself why I found this painful and perhaps it was because I knew that I would be being rejected similarly, but with me there was another reason for rejection, my disability. However, I reasoned that in everyday life we make snap decisions as to who we interact with and we often don’t even have as much information as an internet profile provides.

Interestingly, I never had a visibly disabled guy message me so I can’t reflect on my own response to that. That would have provided an interesting psychological insight. Perhaps some of them had hidden disabilities but didn’t feel the need to reveal that? Or perhaps it’s because they too are hidden away from public site, just like me at home or in hospital. But they could have been on the internet, after all – I was. Maybe after the feeling of being on the fringes of physical society and out of sight for so long, they too felt self-conscious of making their virtual presence known?

I also screened out those people who seemed only interested in one thing (sex); I was looking for a long term partner after all. But I started to get suspicious – no one seemed to mention my health or question my wheelchair. I considered that perhaps they were all extraordinary gentlemen-like types, waiting for a bit of back and forth banter before coming out with it, and, some did. However, on the whole I wasn’t questioned and I soon started to feel deceitful. I asked myself why? Should the state of my body functioning be public knowledge? Would I expect someone else to immediately tell me about their bowel habits? Does my visible-disability entitle others to probe?

Claire describes the same concern about ensuring her matches were aware of her disability;

“The couple of guys I seriously dated never made reference to my disability in the messages. In fact, I had to check before meeting them that they actually knew. Both had the same response that of course they knew but it wasn’t relevant to any of our discussions. Having a photo of myself in my chair did work exactly as I hoped.”

As I was chatting to guys, I began to casually ask if they had spotted my wheelchair.

Once that I had been pointed out, I felt duty-bound to mention my illness. Once again I asked myself why? Am I public property because my body is different from the norm? Previously, when I wasn’t in a wheelchair but still severely unwell, was my body owned less by the general public? I know for certain that I felt less pressure to explain myself immediately as a non- wheelchair user. But how much should I reveal? And why did I have an uncomfortable feeling of stripping myself bare to strangers on the internet when I started to tell them about my health?

Perhaps because, in the real world, I wasn’t used to having to describe my disability in detail. It is a part of me, but in social interactions it doesn’t define me. In my mind, there are far more defining factors. And for a partner, me having a disability should be incidental. Yet at the same time, I know that it’s far more than that for most people. After all, as Scope cites from a 2014 study, 67% of people feel uncomfortable talking to a disabled person – did I expect it to be easier when it came to love and the internet? Both in the virtual world of internet dating and the physical world (if I am able to get out into it) my disability does, to some degree, determine who approaches me and who will initiative interaction. And I’m fully aware that it affects my ‘status’ as a romantic partner.

I know that it affects how I live my life, how I do everything; from preparing meals to socialising. So I think I believed that I owed it to these guys to make them aware of this ‘thing’ in my life even in the very preliminary stages, despite the fact that I felt like I was stripping myself naked by doing so. I think the ‘thing’ (my disability) was something that I felt the need to apologise for and ultimately I believed was a large negative about myself that I had to make up for somehow.

As Esmeralda, a female wheelchair user, articulates,

“Some [people] still have the perception that a disabled person isn’t independent, can’t have sex and do all the things that so called “able bodied” people do, hence, I think they are ashamed. In a way, society judgesthe person dating a disabled person by asking or thinking if s/he can’t find a better partner than the disabled one”.

To be truthful, this insight taps into my own insecurity about having an inferior status in a romantic setting.
There must have been some guys who were put off by the wheelchair and my mention of illness, but in the world of internet dating, people come and go, accept and reject in the tap of a screen so I wasn’t really aware of this. What became a lot harder for me to deal with was the investment, both energy wise and emotionally, that I put into messaging interested guys (people who had acknowledged the wheelchair and mention of ill-health and still wanted to chat). It’s an investment for all internet daters; you spend your spare time chatting (sometimes at length) to strangers who you might end up on a date with or you may not. But for me, it was more than that.

I took time to describe my health issues to non-medically trained strangers, albeit trying to do so briefly and with levity. The disappointment came when they would cease chatting to me after that. I felt like ‘my information’ was out there in the ether and after I had exposed myself there was no re-concealing that. I’m aware that other women have taken a slower, less up-front approach with great results;

“I found a guy called Keegan who wrote a funny thing on his profile which made me giggle. So I started talking to him for quite a while. I knew he was a nice guy & so I slowly started telling him about my condition. 6 months later we finally met. I think he was taken aback but he didn’t really say much. He just helped me if I needed to move etc. 15 years later we are still together” says Danielle.

I secured quite a few dates, which in some ways really buoyed me. Claire writes;

“I ended up going on a lot of dates. I was the queen of the first date and rarely managed to secure a second. However, I do view it as a positive experience. I never thought I’d be the type of person to go on loads of dates – I never thought I’d be desirable or attractive enough. Being able to log into an app and get a date really boosted my self-confidence”.

It seems that for some of us securing dates seems less daunting and more possible over the internet.

However, the actual dates came with their own set of problems. It wasn’t too hard arranging for the date to be at my house and I wasn’t worried about safety because I would have my live-in carer present. But that was the issue, she would be present. How on earth would I negotiate a romantic evening, hopefully with flirtation aplenty, with an observer? And what would I tell my date? In the end, I played it by ear. A date would turn up at my door and my carer would answer. I would introduce her by her name and she would get drinks and serve dinner. As the date progressed, I would then divulge that she cared for me and lived with me. I think I let the date conclude whether she was just an amazingly caring housemate or paid health care professional. I had fun and enjoyed the challenge of meeting new people but I didn’t have a sizzling connection with any of them.

The results

I had a string of dates followed by a fairly long term relationship that eventually ended. So after a while, I jumped back on the internet dating horse. But, I decided to try a different approach. I’m a Christian and I thought perhaps using a Christian dating app might not only help me find someone who had the same values in life but perhaps may yield a more understanding man, or at least someone who may be able to cope with my ill health better.

Yet another hurdle lay ahead, I found myself being asked extremely personal, in depth questions about my health and state of my body. For example, I would be openly asked whether I could have kids, if my conditions were genetic etc. I realised that although these men weren’t looking for a quick hook up, they were looking for so-called ‘perfect’ wives and mothers. “I want a woman who will give me a rugger, bugger of a son” one said. It seems that my suitability as a match was entirely defined by my reproductive potential. And considering my body didn’t reflect that of an ‘able’ woman, I didn’t qualify.

Once again, I was back in the same situation of asking myself, how much should I reveal to strangers? Are my reproductive faculties really the fodder for good internet dating banter, let alone, why did I feel so enraged about discussing them?
I chatted to a fun, articulate doctor for quite a while. He was very keen but then he asked about my exact diagnoses and after researching my conditions he decided “he couldn’t take on that much, it would be too much to live with”. The feeling of being rebuffed not because of anything I could control; my personality, my ability to undertake witty conversation, my appearance (albeit controlled to some degree), but because of my health conditions (that were the bane of MY life anyway and that I didn’t want myself) hurt all the more.

I quickly learned to get my story of illness out there fast, to post photos of myself obviously in a wheelchair in order to immediately sort the wheat from the chaff, just like Belle who adds,

“I [later] decided that if I put my disability in my bio and showed photos, I then wouldn’t have to worry about that [people being put off] and people would only message me if they were still interested”.

So if the potential dates could see past my wheelchair photos and still wanted to get to know me, then I would invest time into getting to know them virtually by long conversations and flirting online.

Not until I was sure that I had a real connection with someone did I reveal that I had high care needs, I have an assistance dog with me at all times, and, if we met, they would have to come to my house. Once they realised this, and if they were still willing, then I would arrange to meet them.

I met people who accepted my ‘status’ as a disabled person. But I realised that I compromised on my connection with them or allowed certain unhealthy behaviours from them (such as making jokes akin to ‘everyone in the room who wants take-away stand up… oh wait…Sally can’t, guess we will be having curry anyway!’) because they had been ‘kind enough’ to put up with my baggage.

Alice recalls;

“One date turned out to be a man. Not transgender or cross dresser. A man in a suit. When I told him I was gay and I thought I had been talking to a woman all these weeks he laughed and said I needed a good Christian man to take care of me. I felt so violated. I went to the toilet and caught the waiter on the way and explained”.

This story clearly highlights behaviours from potential romantic partners that wouldn’t necessarily occur in a non-disabled setting. Did this occur because she was disabled and somehow more likely to accept normally unacceptable behaviours or is this normal internet dating? Here, Alice rejects this behaviour and actively feels violated by it. But my experiences served to accentuate a feeling of otherness or inferiority.

Was it all worth it?

I persisted, as did others;

Claire jokes that…

 “After multiple years of writing interesting and slightly quirky messages and going on date after date, I met my current boyfriend through online dating and we’re the happiest we’ve ever been, so for that alone, it was worth it.”

I finally knew I had met someone who I wanted to be with long term, when I realised he accepted me for me and openly discussed his ‘baggage’ with me too. He was willing to be vulnerable about his life and past. This gave me the confidence to be open about mine.
The deal was sealed when I asked him how he felt about me being in a wheelchair and unwell. He replied that he ‘didn’t really notice the chair or carers, he just saw me’.
When he proposed I was obviously over the moon- I was in love. However, a relative took him to one side and gave him a full interrogation about whether he understood the implications of being with me for life. What he might miss out on, what he would have to give up to live with me etc. This was done with the best of intentions but clearly was distressing to me. However, my fiancé came out of the ‘interview’ both a little inebriated (to deal with the interrogation) and still dead set on marriage. I couldn’t have asked for a better partner. Thank you internet dating ?

So what have we learned?

We started this journey into self-discovery and the experiences of others but honestly we’re none the wiser! Everyone is different and everyone has different experiences – we have a lot in common, we’re both young disabled women who work on the same projects and are friends but our experiences couldn’t have been more different.

It is important to realise this is true of ALL women. We can’t say that online dating is yet another inaccessible world to disabled women because society tends to think all disabled people are asexual as many disabled women have had positive experiences. Hopefully we’ve demonstrated that disabled women are as sexually agentic as any other category of woman and their experiences should be valued.

It’s also hard to say whether it makes dating more accessible by providing a platform that everyone can access from home or wherever you are most comfortable as, for others, the online dating world has been another hostile environment.

So we guess what we’re saying is it’s the luck of the swipe!!!!

Follow Sally on twitter

Emma’s blog is www.emmavogelmann.wordpress.com/

A big thanks to Emma and Sally for being honest and open and sharing their experience with us … one word we would like to say is …. 

“RESPECT” …

show some!! 

Big Love HG xx

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