The ramblings of a 20-something disabled, queer, feminist, Irish kitty

The more my health declines, the more disabled I become, the more angry I get at this attitude that all cripples are just fakers, sponging off the government because they’re too lazy to work.
I think two things made it really hit home recently… I decided to read the guidelines for the Equality Act 2010, so that I would know, once and for all if I’m ‘technically disabled’. For years I’ve struggled, when filling out forms, with whether or not to tick the box that says I’m disabled. So I read the entirety of the guidelines, and what qualifies you to be officially disabled.
The main thing the guidelines highlighted was that it has nothing to do with whether or not you have a diagnosis, whether or not the doctors or government or society have given you the blue badge of approval. It depends entirely on how your symptoms affect your day-to-day life.
Reading through the document, and it’s various examples of how an illness can affect your life, and your ability to carry out simple tasks, it struck me that pretty much every disabled person you see is *more disabled than they look*. Whether you’re disabled from birth, injured in an accident, or slowly crippled by a degenerative illness, ALL disabled people learn to compensate. Human beings are extremely adaptive, as well as having the instinct to automatically try and conform and fit in with others. So as soon as one has some kind of ‘impairment’, one automatically starts to compensate, to try their hardest to fit into the mould that is ‘normality’. All the little ways we learn to compensate, whether it’s by always opting to take the lift instead of climb the stairs, casually ask someone to pass you something instead of bending or reaching, or whatever other little tricks you learn to fake ‘normality’, to fake still being able-bodied like everybody else…
This means that, by faking it as much as your body will allow, by trying to blend in and not attract attention to the things you cannot do, you always hide at least a portion of your disability. Some ‘problems’ are easier to conceal than others, of course… As soon as you stop being able to walk, as soon as you need a wheelchair, you get ‘officially’ branded as disabled. But even when you need a wheelchair, or lose the ability to see or hear, or any of the other things most people take for granted, you start compensating, doing whatever it takes to seem as ‘normal’ as humanly possible.
I’m not even going to get into how fucked up this is, this instinct to try and confirm, to assimilate yourself as best you can into the picture of what others deem a person should be…
Instead I want to draw your attention to the effect this might have on people who claim benefits. Not to mention those who are too scared or ashamed to even apply for benefits, lest they be branded a ‘scrounger’. Go on, think about it… That’s right. It means that every single disabled person is more deserving of whatever benefits they can possibly apply for than you think they are. A fun fact from the Equality Act is that, when deciding if you’re a cripple or not, one has to take into account what you would be like without any medical treatment you might be using, whether that’s a little pill you take each day, or a weekly therapy session, or anything else. ‘They’ (whoever ‘they’ are) have to stop and think about what you would and would not be able to do without any medical intervention, assuming you would still be alive at all.

And the second thing that made me stop and think about this? Having to write down an entire list of all my own symptoms to bring to the doctor, and a list of all the little ways I’ve learnt to compensate for my problems. You actually forget how weird and unusual all these little things are, these little tricks for coping with life and pretending to still be ‘normal’. It actually often even takes an able-bodied person to come along, and get close to you, close enough to see the ways you compensate, and to point them out to you, for YOU to realise how much your life has changed, never mind someone on the outside looking in.

So that person you see walking down the street, who smiles and nods just like everyone else, but who dares to claim benefits… Well how dare you judge them? Maybe they have an inhaler hidden in their pocket, maybe they have a little pill they take each night before bed, maybe they even have a wheelchair at home for days when they do struggle to walk. YOU DON’T KNOW. So unless you are a medical professional, who knows this persons entire medical history, don’t you fucking dare make assumptions about whether or not they are disabled, or whether or not they ‘deserve’ benefits. Because you don’t know the first fucking thing about them or what their life is like. And I can pretty much promise you that we don’t sit around wondering if able bodied people really deserve that job or promotion or shiny car they just got, or even the other benefits they might be on. Because we know that it’s none of our goddamn business, and we know how horrible it is to be constantly judged and treated like second class citizens because of something we cannot even control.

So next time someone bitches about ‘benefit scroungers’, whether it’s a colleague or neighbour or politician or the media… Just stop and think what the chances are that this person knows the full story, and whether or not this person is really in the position to make that judgement.

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TOO MANY FEELS.

WHY DO I HAVE SO MANY FEELS?

I hate not being able to trust my own feelings. Thanks to a combination of being bipolar, having a fucked up childhood, and being overly dependent on A, that is increasingly the case, and I feel I cannot trust myself or make my own decisions.

Today is the funeral of my sister-in-law’s mother. I am not going. Ipswich is far away. Trains are expensive. I am a cripple and need to stay in bed today. These are the reasons (excuses) I am telling myself.

Then I see that C is going. She is leaving home at 6.30 am to make it there, in her wheelchair. I feel guilty  now for not going. I go to the Facebook event page to apologise, and to finally give my condolences. Instead I actually pay attention and read the page properly. On doing so, I discover that there is a second ceremony in London tomorrow. Now I feel even more guilty. If I had realised this yesterday I would have at least considered staying in London and attending it. My brain automatically wonders who to blame now. Is this oversight my fault, for not reading the entire page, for not caring enough to take the time and pay attention? Or was the information not clear enough? I guess it doesn’t really matter.

I discovered all of this shortly after 8 am this morning. I mistakenly assumed that A also had today off work. He usually does whenever I do since he gets more holidays than I. So I assumed that I could hash this out with him at length, the way I do with virtually all my problems. Instead, it turned out that he did have to go to work, and we only had about 5 minutes to discuss the issue. I gave him the facts. I said I felt guilty. He had only minutes to deal with my feelings. He said that I cannot get leave from work tomorrow, that bereavement leave does not extend to distant in-laws, only immediate family. As far as he was concerned, that was that, case closed.

I know that he was trying to help. That it is not his fault that he had to rush off to work. But now I (irrationally) feel like my feelings have not been heard. The situation is more complicated than I had time to explain. Or, at least, I feel that it is. I need more time to discuss and process it.

If I had had time, I would have reminded A that my work are very lenient, that I am fairly confident that they would allow me to take tomorrow off, even at this short notice. So I feel that A’s excuse (reason) for not going tomorrow is invalid.

Everything is so damn complicated. Feelings are so messy. I do not know if this is just me. I have issues. I have guilt complexes, bred from years of living with someone who (possibly) has BPD, for whom guilt trips are a normal way of life.

I know that I should not feel guilty every time C decides to do something and I do not. But her health is so much worse than mine that I feel like if she can do it then I should be able to do it too.

I feel like I should be there for family. And I feel like A disagrees. I feel like this is probably because of the things I have told him about my childhood. He has heard mostly bad things. He knows that I do not like spending time with much of my family, and for perfectly valid reasons. But I still feel the tug of family responsibility. To compound matters, like with most things, I do not know if this is a ‘normal’ human response, or if it is a product of my mental illness and past. Is this just Catholic guilt, compounded by years of emotional abuse? Or is this the so-called ‘normal’ human response of “family comes first”?

I cannot tell any more.

This problem is compounded even further by the sudden realisation that A is actually a human being too, with his own feelings and experiences. He is not just some sounding board, not some machine for me to put my problems in and expect a decision to fall out. I have just said to someone that I am writing all this down instead of dumping it all on one person. But then I realised that if A had had the day off I would have happily dumped it all on him! I realise now that I expect too much from him.

Robot

I rely too much on him. I have known for a long time that I am overly dependent on him. My best friend lives in another country. Most of my other friends and acquaintances live in different counties, and I am not as close to any of them emotionally as I would like. I have known for a long time that I need a close friend who lives nearby. This is something that my CBT was supposed to help with. But it still has not happened. At times like these I am still at a loss as to who to turn to.

Oh, and to make today’s decision even more complicated… I have a therapy session tomorrow afternoon, which I would have to reschedule to be able to go to London. While I feel I would probably be able to get tomorrow off work easily enough, rescheduling my therapy feels a lot harder. This gives me more pause.

And then I look at all of this and wonder why I cannot make my own damn decisions. My therapist tells me that I am too passive a player in my own life. And, immediately, I have a passive reaction! I say nothing, but internally I blame others, I blame my childhood. And this is why I need psychotherapy!

Maybe I should keep this up, write everything down, and then show it all to a therapist. I am much better at putting words to my feelings than I used to be, but I still find writing them down easier than saying them out loud.

And yet more guilt… I argue with myself as to whether or not I should publish things like this, or keep them to myself (and maybe my therapist). I feel guilty for feeling guilty about the things to do with C, and A. Should I say these things somewhere where they can see them? I already know that A’s answer to that question would be yes, but I still worry. I don’t want to make them feel bad. I know that they have done nothing wrong. These are my feelings, and mine alone. I do not blame others for them (or not those mentioned above anyway).

I feel like this whole thing could probably be separated into about 5 different blog posts, and there are yet more issues that just writing this down has bought up, which I am now leaving out! But fuck it, feelings are messy and complicated and intertwined, so here they all are!

Tangled friendship braclets

And now back to the original point, the crux of the matter…

Should I go to London tomorrow?

Someone please tell me, because I am not enough of a grown-up to decide for myself.

Relationship Labels

So here’s the question; Does anyone ever benefit from labeling their relationships? Or is it only ever for the benefit of others? Because society demands it?

 

There are so many labels one can put on a relationship;- ‘dating’, ‘in a relationship’, ‘fuck buddies’, ‘friends with benefits’, ‘just friends’, ‘poly’, ‘primary’, ‘secondary’…

 

But how helpful are they really? How many people have ‘the relationship talk’ just so they know what to say to *other* people when they ask about their relationship? So there isn’t that awkward moment when someone asks; “So are you dating, or what?” or “So is he your primary then?”, or some such personal question. It’s always so awkward when someone asks you that before you’ve had ‘the talk’, and you pause, unsure what to say, because you know how *you* feel… but what if they don’t feel the same way, and oh god what if you say the wrong thing and it all blows up in your face…!!! (Okay so it rarely gets quite that panicky, but you know what I mean).

I’m asking all this because I’m thinking about having ‘the talk’. I’ve been putting it off, as you do. And I’m guessing I’m putting it off for the same reason most people do – fear of rejection. It’s an awkward conversation purely because you’re sitting there waiting for the other person to confirm your worst fears – that they don’t feel the same way.

At first I thought it was a conversation that only had to happen once per relationship. But I’m slowly realising that that is not so. I’m not sure whether that’s just because I’m poly, or if the same is true of monogamous relationships. I don’t suppose it really matters though.

Either way, I’m realising that relationships, like any other organic thing, change over time. Peoples feelings for each other change, which especially when polyamorous, can seriously affect the dynamics of your relationship.

The more I think about it the more I think that it’s a more relevant thing for poly relationships. I know not everyone likes the terms ‘primary’, ‘secondary’, etc. but they make things easier to define on some levels, so I use them, if only some of the time.

 

Now down to the situation in hand. Because this isn’t just random 3am ponderings, but a question stemming from a current personal situation.

What do you do when you have to finally give in and reevaluate your poly relationships? Who do you talk to first? How do you negotiate, for lack of a better word, swapping the labels of 2 partners?

Situation *was* this; Partner A started off as my ‘primary’, and partner B was my ‘secondary’. Partner A then started seeing a ‘secondary’ and partner B had a ‘primary’. But, as is life, things have changed. Partner A lives in a different country. Partner B broke up with his ‘primary’. Even before that, relationship with Partner B was becoming more serious by the day. Now Partner B and I have moved in together. And Partner A and I talk less and less frequently.

In a way the solution seems simple. Partners A and B have effectively swapped ‘places’ if you like, and therefore so should their labels. Yes?

But how do I go from making my own mind up, to discussing it with each of them? What if one, or both, disagrees?

For the record, I have at least vaguely mentioned the issue to both partners, but with no real agreement made. Partner A seemed okay with it, but may have been lying just to please me. Partner B refused to talk about it. But that was a few months ago.

 

So, now I’m contemplating bringing it up again. But dreading it.

What do I say?

Who do I talk to first?

Fuck it, maybe I should just make them both read this!!!

 

But now to the society question…

It’s something I’ve thought about before, in general terms. And now I’m asking myself again: Am I trying to label my relationships for my own sake, or simply because that is what society demands?

I have been asked by others (not very often, but still), what label I put on my relationship with Partners A and B. Not in those exact words, but… Poly people ask “which one is ‘primary’ and which one is ‘secondary’?” Mono people ask “what the fuck?” (not quite, but you know what I mean!)

Then there’s the parents… I could write entire posts about the parent issue (and probably will), so for now I will just give an overview: My parents are Catholic. Therefore inherently disapproving. I hide things like being poly, bi, etc. from them, if for no other reason than because telling them would only hurt them. So I can’t tell them I have two partners. So I have to choose

The choice has already been made, so this isn’t a question, merely a fact that affects the overall question of ‘the talk’. First I told them about Partner A. We were dating, etc, etc. In their eyes it became more serious the longer I stayed with him after moving to a different country. Logically, no one would keep up a long distance relationship if it wasn’t serious. Because they knew about Partner A, and because they knew about Partner B’s fiancee, I couldn’t tell them about my relationship with Partner B, and had to pretend we were just friends. But the more serious my relationship with Partner B, the more I worried about having to tell them. And then the day came. I had to tell them I was moving in with Partner B… By default this will mean I will have to tell them I have broken up with Partner A, but that we are still friends. This really sucks 😦 But I see no alternative. Those of you with Catholic parents will understand.

And on a far less important note, but still there… there’s Facebook…!

Just another societal pressure… At the moment, my relationship status still says I am in a relationship with Partner A. But especially since my parents now think that this is not the case, sooner or later the day will come that I will have to change it to say I am in a relationship with Partner B…

To me, the worst part is how this will affect Partner A. How do I tell him that I will have to do this? I hope it will not hurt him too much.

This probably sounds stupid, worrying about Facebook statuses… But such is the problem with societal norms. People expect things of us. And especially since moving country, Facebook is my main source of interaction with people back home. So no matter how stupid and insignificant it may seem, it still has some impact. It still must be factored in. I must still conform to society’s expectations of me. Or at the very least, my parent’s.

And the Catholic guilt really doesn’t help. But again, I could write entire posts about that, so maybe I shouldn’t expand on it just yet!

 

So there you have it. These are the reason I feel I must have ‘the talk’.

But no. I stop and ask myself – am I only feeling this need due to society? Or is there another factor?

And the answer is that I think it would be beneficial on a personal level as well. I have been feeling somewhat insecure in my relationship with Partner B ever since his break-up with his ‘primary’. And his refusal to discuss the situation last time I tried to bring it up *really* didn’t help, and does not exactly fill me with confidence for trying again.

But that’s just it. Last time I tried to bring it up it only served to make me more insecure! So how do I find the courage to broach it again? Sure, if he agrees it will make me feel wonderful. But if he disagrees… it will devastate me.

 

I know I must do it…

But how?

And when?

 

Comments / advice welcome.