Disability and self-acceptance

I have a medical condition. I don't know what it is - the doctors don't know what it is. All we have is the symptom, and so far, all treatment has failed. I have made adaptions, and on my best days (and I can have as many as two weeks in one go) I can barely notice I'm ill. On bad days (and I can have as many as a week in one go, with a couple of days of feeling better, before having another week of badness), I can barely stand, let alone walk or turn around. Largely, it is I guess, an invisible disability.

some people notice, some dont. If i go out in to a group of people, I tend to tell them, (I have been accused of 'zoning out', when I'm just dealing with the situation). I've had this for a year now. I am lucky enough that my work has allowed me to work from home, so that I CAN continue to work. If I was forced in to the office, I would be off sick by lunch.

I don't have the language for this. Am i disabled? Do I feel disabled? I recently told someone for the first time that I was disabled. I closed the door and felt like a fraud. On good days, I feel (every time) 'maybe this is it. maybe I'm getting better!' to then come come crashing back to earth a few days later when I wake up on a bad day. Recently I looked back on my private journal and found an entry i wrote in March that said pretty much exactly that. Yet here I am still.

I feel like a fraud for trying to 'join the ranks' of (other) people with disabilities. I don't know the language. I don't have it as bad as some of the people I follow on twitter for example. I guess some days I have it worse - I don't know. But the worst thing about this is the feeling that I don't belong in either camp. I could wake up tomorrow and be permanently better. This could be wishful thinking. googling things like 'newly disabled' gives me 'tips for the newly disabled', which instantly turns me off, and another, similar page I read gave top ten tips, but all related to mobility issues rather than chronic conditions

Perhaps 'chronic condition' would be a better term. but that doesn't in any way convey the fact that today I'm stuck on the sofa, feeling like death when I try to move. I wrote most of this blog a week ago, and have prevaricated on posting it ever since - another sign that I don't feel like I fit in. Will i ever feel like I fit in?

Yesterday, my dr gave me a new medication. I'm hoping that this will be my miracle cure. I'm hoping that in a day, a week, a month (hell, I'll take a year) I'll be better. In that respect, I recognise that I'm so much better off than the people who have no prospect of getting better. But if this medication fails (and i requested it on reading one study of 16 people) then there's a chance I'll go into some kind of spontaneous remission, but as each day passes that chance seems to diminish.

This isn't meant to come across as maudlin - I'm genuinely curious as to the thought proceses that are going on. As for being sick, I'm used to it, so in some ways, it's a lot easier than when I was newly ill.

Non-monogamy and cheating

I got to talking with a new friend last night about being non-monogamous. It was a conversation that (surprisingly in my experience) went ok, but this may be because she's a bit alternative herself.

Most times that I have come out as poly/open (our relationship is both. I use the language that's most acceptable in the course of the conversation I'm having, and explain it as fully as can, given what the other person knows about my life.) to people, they have either been other poly/open people, and it's been ok, or it's been to non-poly/open people, and I have been viewed as a person with two heads. As some kind of monster

I remember a clear example - I was chatting with a friend, and we were joking about me never having kissed anyone with a tongue piercing. She laughed and said she would kiss me, then remembered that I had a girlfriend. I said it would be ok with my gf, as we had an open relationship. The comment started off an absolute tirade about what kind of person I was, and how could I do that to my gf, that it wasn't fair on her, that if I was going to do that kind of thing I should pretend I hadn't, and have an affair, because THAT wouldn't hurt her

That, unfortunately, seems to be the norm. I have had several friends (many of whom had had at least one affair) tell me that my lifestyle is wrong, that I am hurting my partner (who is quite happy with our arrangement) and that if i HAVE to seek out other relationships, I should have an affair

The problem lies in a couple of places - one, because the 'normal' reaction is obviously to be monogamous, they assume that she is only 'putting up' with this. They (most of them) can understand having an affair, because that's 'all about the sex' (many of them say they couldn't be in love with more than one person), but they cannot understand it being ok to KNOW their partner is having sex with another.

Two, society is set up for binary dyads. Many of us are aware of bisexuals being told they're 'confused' (you can only like men OR women) for example. With affairs, I know of people who have brought their affar partner into a social circle, and that affair has been completely accepted, *because that's all they see* - that's the dyad they're looking at. They know they can't ever refer to the affair in front of the relationship partner, and that's ok. that's the way the world works. There's the 'affair' dyad and the 'relationship' dyad. If all relationships are ok, then that confuses the dyad system. People feel bad about mentioning my (hypothetical) partner A in front of my (hypothetical) partner B because that breaks the dyad system.

But to have a loving, accepting, honest relationship where both partners are secure enough within each other to allow open/poly relationships, that is outside of many people's experiences. Some people just aren't wired that way - I get that (although equally, many people are serial monogamists - they go from one relationship to another with almost no break. I am willing to bet sums of money that some of them are stil having feelings about that old partner whilst they are developing them for the new partner), and some people ARE wired that way, but aren't secure enough to allow their partner that freedom. I often hear people say things like 'what if she leaves you for X?' and my answer is that if she WAS going to do that, not being poly wouldn't stop it. Affairs are alive and well and tolerated. I would much rather she was honest with me and said 'I really like X person and I'd like things to go further' knowing that it would be me she came home to, than that she try and pretend she DIDN'T feel that, and lie to me.

Because to go back to my first response comment - it hurts me a lot more if my partner is lying to me. It hurts our relationship. We have no secrets, no barriers. If she was hiding something from me, I'd know. And I've seen relationships ripped apart, where one partner feels they are going crazy, because they feel something is being kept from them and are constantly told 'no, there are no secrets' to eventually find out years or months down the line that they were right all along. Some of these people have sought specialist help for their 'paranoia'. I am not sure how that is in any way 'better' than being honest with your partner. At least if your needs do not match hers, it is out in the open and you can make an informed decision on where to go with the rest of your relationship

If it's not compatible, it's not compatible *and it can't work*. Cheating is not 'making it work'. You don't have to be poly yourself if your partner is, but it will struggle to work if you cannot accept their polyness, if the poly partner cannot accept being monogamous. And if it IS compatible, well then, happy times all round. When I told my partner I was poly (right at the start), she wasn't sure. She wanted to try. We were honest with each other - I told her what she asked for (without intimate details about other people) and we have talked every step of the way. We've been almost four years with each other, and married for two. I've been poly all this time, and have had several partners as well as her. She has had her own fun that she wouldn't have had in a monogamous relationship, and all is well. Some day, we'd like to find a person that will fit both of us, and live 'happy ever after' as a triad. The difficulty will be in finding someone who appeals to both of us, and someone to whom both of us appeal...

BDSM is not abuse (necessarily)

50 shades of grey. Yes, more...

Disclaimer: This entry discusses bdsm, domestic violence and sexual abuse

Now I'm jumping on many bandwagons here, I know. But a friend earlier linked me to this: Fifty Shades book burning call by abuse charity. The speaker points out that Ana is naive, and she is, and that Christian is abusive, which I also think he is. But the text says 'beats her up and does some dreadful things to her sexually'.

But i think the point is missed here. The problem in this book is Christian's CONTROL of Ana. That he buys her expensive presents and gets upset when she wants to refuse them, that he stalks her (tracks her whereabouts from her phone, knows where she lives), that he doesn't want her to visit her family or have time away from him, and when she DOES go, he turns up, on the other side of the country, because he couldn't *bear* to be away from her (at this point they've known each other perhaps a month).

You don't need BDSM for that to happen. Most people in relationships where they are being controlled and manipulated by someone AREN'T in a BDSM relationship. I can think of several examples in my own friends and family, where they are afraid to do X thing because their partner 'wouldn't like it', or they can't talk to X person because their partner 'doesn't like them'. I have friends my partner isn't keen on, but that's fine - SHE doesn't talk to them. It's perfectly ok if I do. Even if she wasn't keen on me talking to them, that would be ok. if i was AFRAID to talk to them because she didn't like it, that wouldn't be ok. And that's what happens in the book. Ana is *afraid* to tell Christian things (several of them inconsequential) because she is afraid of what he will do to her. The way she frames these things is abusive. She is afraid of being 'beaten', and she says this to him. This is a place where a non-abusive man KINKY or not, would say 'ah. some thinking needs to happen here'.

The BDSM community, by and large, is VERY about 'informed consent' (the largest UK-based site for kinky people is called just that. Look on the message board (or do a search) and you will find several posts about consent and how important it is to negotiate boundaries and limits. A BDSM person who crossed these lines would be seen as abusive. In the book, Ana is given a contract and they talk about it, but frankly, the woman's never had sex (or it seems, given any thought to the issue of what she likes - she has never even masturbated). How can she give *informed consent* to any of this? THIS is where the abuse lies, not the individual acts themselves

Many women (and men) like to have 'dreadful' (by which the speaker is talking about being spanked, and cropped and presumably is also including having an experience with ben wa balls (link goes to the wiki page)) things done to them. If they have some idea of what they are talking about, if they feel that they can stop this at the point they want it to, whether this is a single one-off handspank, or spending hours being hit with a crop, then THIS IS NOT ABUSE. This is BDSM. It's a way of having sex, and/or a way of having intimacy. It only becomes abuse when they cannot consent, by way of not knowing what they're consenting to (like ana) or if they are afraid of what will happen to them if they transgress.

The problem with equating these 'dreadful things [being] done to her sexually' with abuse is that we will make hundreds of women and men across the country into abuse victims. We will make people reticent about discussing things that MAY be important to them for fear that they will be seen as abuse victims. This will stop many people into BDSM from seeking therapy, and will stop many people already in therapy from being honest about their lives with their therapist. These problems will be encountered by people talking to therapists who aren't educated about BDSM, and who haven't done any research (or perhaps not enough). Training (in the UK at least) does exist for counsellors and therapists wishing to understand more about alternative sexualities, and for those interested, here is an interesting page on the differences between BDSM and abuse. Many of the 'red flags' are present in this book.

50 shades of gray is a book about a controlling, abusive man who happens to be in to BDSM. It's not a book about BDSM. It does not warrant burning because it has BDSM in it (it warrants burning possibly only because it's terribly written). It is not reflective of the BDSM community as a whole. It is reflective of one unpleasant man who also is into BDSM.

Children

Don't get me wrong - I love kids. I just don't want one.

It came as an awful surprise to me, when a year in to a relationship with an ex, she asked when we were going to look at adopting. I was stunned, and it took me everything I had not to trip over an unexpected piece of dust, and pick myself off the floor. I have always been child-free. It never occurred to me to be anything else really - I love my life as it is - the ability to go out five nights a week (I wish, I really wish), or just to sit at home with a book, in peace and perfect quiet (we'll ignore the existence of the kitten for this image).

I'm too selfish to have kids, and I know this, and that's ok. I'm lucky that I'm in a lesbian-identified relationship, and therefore most of the comments I get from people about kids come from a 'well it's not like you can do that anyway' point of view (seriously, that happened about a month ago).

I suspect that if I was in a straight-appearing relationship, that it would be a very different question. With regards to my ex, she'd never considered that I wouldn't want children, as she comes from a 'it's a woman's role' kind of place. Me, I just think 'I can't give birth - I can't have an alien growing inside me, and OH GOD, what would it do to my belly button?!' (I have a major belly button phobia. no-one gets to touch it, on pain of death). So we compromised on adopting. Except I wanted to adopt an older one, so that we'd have it less long.

And at this point i thought 'no, I'm REALLY not cut out for this'. We parted ways. She still hasn't had kids, but on a more happy note, neither have I.

I suspect this is one of the few areas of my life where it pays to be a queer woman - no-one expects me to have kids. I can revel in this, and get as many cats as I like.

This post is entirely prompted by the fact that we are about to have my partner's 13 year old niece to stay for a week. We love this kid, she's great. We have her once a year for a week in the summer, and we do STUFF with her (she's going to london for the day, and birmingham, and the cinema and bowling and pretty much anything she asks for that we can afford). Luckily for us her requests tend to go run to 'Auntie C, can we go to the museum?', and we can afford this; it's free, so we go. It gives me a week to go 'I can do this - I can survive children' and then 25 weeks to go 'thank goodness that's over' before starting to think forward to having her the next summer.

The anxiety stems from the fact that we see her little, maybe 2-3 times a year, so I always feel like I don't really know her, but it's always turned out well in the past, and it cements the knowledge that I've made the right decision - NO KIDS.

Trigger warnings...

So i recently got in to an argument with someone about trigger warnings. That has been what spurred the creation of this blog and without more ado, a blog on that topic

In short, I think trigger warnings are over-used, do women (mostly, but also men) a disservice and are incorrectly named. Let me explain..

I have been called to task for saying they do people a disservice, but my reasoning is this:
If you use it correctly, fine. write 'trigger warning: abuse' and then go on to discuss the thing in detail. People who don't want to read in depth stuff can scroll on by and people who are happy to deal with it, can read at leisure. The problem comes when people write (for example) 'trigger warning abuse' and then go on to talk about all sorts of random things, including the line 'I was abused' (or someone else was) but nothing further. At this point, there is no point in the trigger warning, as the warning is as graphic as the text.

I see in so many places recently, we go out of our way to make sure we don't upset people, so we add in trigger warnings wherever there is the slightest mention of upsetting things, not just where there's in depth discussion. This is where we do people a disservice. If i cannot deal with a full-on discussion of abuse, but can happily read a mention of it, I am prevented from making a choice by this use of trigger warnings. I cannot make an informed decision about what's under that cut and so am forced to scroll on by. If text were, for example marked 'contains discussion of abuse' I know what I'm looking at (or not, as the choice may be). If however, we feel the need to 'trigger' for a 'mention of abuse', surely at that point, we need to trigger warning our trigger warning. And this is where it would just get daft.

My other point is the name of the thing. Like many people, I have a past where Bad Things (tm) happened to me. I'd rather they hadn't, and I spent a lot of time dealing with them. There are things about those experiences that get to me. But the 'trigger' is nothing to do with the word 'abuse' (or even a discussion of it, and I know, I'm lucky there), but say a specific (and innocuous) phrase to me, and I'm that terrified child again. I don't like it, but I can't help it. That's my trigger. and very few people know this certainly not strangers online. Being upset is not the same thing as being triggered, and to assume that a thing is triggering because it's upsetting is not a good thing.

As survivors, we do a very good job of dealing with things in our every day lives that are upsetting. Turn on the news, and most stories are upsetting. Watch a soap, and there's a story on domestic violence, or abuse. As adults, most of us are able to go 'eep no' and turn over if we need, or make sure we have people around if we want to watch. The tv doesn't often give us those warnings about what's about to happen, and in many cases, the internet does. But let us make an informed decision about what we are reading, and stop to consider that your triggers are not my triggers, no matter how upsetting the material is.

Thanks for reading!

on being 17 and living away from home

In his next (if successful) stint as PM, Cameron wants to take away housing benefit from under 25s. He has very kindly suggested that housing benefit would not be withdrawn from vulnerable groups such as those with a destructive home life or leaving foster care but as yet, none of this has been quantified.

This speaks to me on a personal level. At 17, my mother kicked me out. I was a sixth form student, and desperately unhappy where I was - the atmosphere didn't suit me at all, and for some time, I had been ill with mental health problems that by and large, I had kept from my family (because by that point, having had a 'difficult' childhood, I already knew well what my mother thought of illness - mental illness in particular). So we had a conversation where I told her I was unhappy at 6th form, and wanted to restart my A levels at college the next year (this was in April). Her rejoinder was 'if you leave 6th form, you leave this house'. And there it was. Going to school every day was making me more and more ill, and making hiding my problems more and more difficult. I doubt that this would be considered 'destructive' under the potential new rules. Little that Cameron does around mental health is about giving consideration to people with disabilities and health problems.

I knew somewhere that had a room going in a shared flat, and upon hearing this, my mother told me to pack. All my stuff was at the new flat the next morning. (I have to say, my mother and I now have a great relationship that we have worked hard to heal. I love her dearly)

This was 17 years ago. I was 17. My rent was £40/week, for a room in which I could touch two opposite walls at once. The rent was 'bills inclusive' which meant that housing benefit (which I received because my mother had duly signed the forms to say she kicked me out) paid £32/week. I had to find £8 a week.

My only real option for income at that point was a YTS (youth training) scheme - a day scheme where you sign up to various types of thing (nursing, office-work, mechanics) and turn up every dayish, and as a result, you get paid your YTS money. In those days, as a 17 year old, it was deemed that I was entitled to £28/week. £8 of that a week went on my rent, so a net income of £20 a week. Out of that I had to spend £7 a week on a bus pass in order to get to the placement. Living on £13 a week was not fun, even 17 years ago. It's not something I would even attempt, had I any option. I spent most of the time up til I was 25 with significant mental health problems, eventually moving onto disability benefit, which did at least pay me significantly more money. Enough to eat on. As a 17yr old, once a week, I would buy a loaf of bread some butter and jam, and I would make the loaf up in to jam sandwiches, and freeze it in the original loaf bag. Every day I'd get out one jam sandwich for lunch. Dinners often consisted of cheap mince and pasta.

An inflation calculator suggests that my £28 a week would be £45 at today's rates. Today's 17 year olds get £51 a week. a 7day bus pass in the same town is now £15.

The cheapest room I can find to rent (in the same town I was in) is £250 a month (inflation-wise it's directly comparable). Housing benefit suggests that it will cover £230 a month maximum, leaving a 17 year old with at least £5 a week gone from their pocket before they start. If they need to travel in or out of town by bus on a regular basis, that's another £15 a week, plus any bills that they need to pay, BEFORE eating. Potentially, today's 17 year old has about 20-30 pounds a week to subsist on. In inflation terms, today, £20 is about what I was existing on.

I had no money to buy clothes, even charity-shop clothes were often too expensive - a winter coat was a concept that didn't even exist to me - that would be a week's food. I would rather be cold and put extra layers on, than go without the meagre amount of food I was eating.

This is not something that's a fun existence to people. people don't DO this if they have a choice, by and large. David Cameron should try, just for a week, living in the types of housing that housing benefit will pay for, and trying to live in any way well, on the money that is allotted to people under 25* on job-seekers. I think he would find it impossible.

*I have to say, that given the recent changes, it's not much easier for someone over 25 and under 35. You are now reduced to living in shared accommodation until you are 35. People who are under 35 and living in a self-contained flat are 'protected' for a short while and then your housing benefit drops (about 40%) to the shared room rate. At which point most people will have to move because in the example above, shared room rate was 230, single room was 290. Most people on £204 a month cannot magically 'find' an extra £60 a month to pay the rent.