Blogging Against Disablism Day 2014: Teaching Someone Else to Live With An Invisible Disability

This post is part of Blogging Against Disablism Day 2014 (#BADD2014) [External Link]. If you liked this or want to see more posts on this subject, please follow the link!


Last year’s post can be found here: Living With Invisible Disability

Basically, I want to talk about how… interesting it has been having to learn to live with someone else and vice versa. This builds on the BADD2013 post, along with my Grand Unified Theory of Life, and Success and Mediocrity posts – mainly because I’ll be using terms that have come up before – but I shall try to make it understandable on its own.


Here’s the bit that’s probably a bit too revealing that explains how Ole [External Link] and I got together.

Ole and I have an overlap of friends due to our shared interest in speculative fiction (science fiction / fantasy / horror) and have interacted online for some time. We only started to talk more directly with each other last year, though. Our Facebook friendship actually dates from May 2013. We met in person for the first time in December. He came over for an extended stay in January. By end of February he had officially moved in.

Yes, this may sound a bit strange and fast but there were a number of factors that made this logical to us. Mainly that if we didn’t sort it out this quickly, given we expressed a wish to try True Love Forever And Ever (TM), the next window of opportunity to discuss living together was probably a year or two down the line. Long distance relationships really don’t work well if the couple remain tentative and neither of us could afford regular meetups if we’d gone that way.

(Yes, we’re weird.)

So Ole moved in – given that neither of us had lived with anyone but family in at least a decade and nor had we particularly planned to. Oh, and Ole is aware of the AS thing but doesn’t get it. Or didn’t. He might be getting there.

What This Means for The Life System

To summarise my concept of the Life system (see the Grand Unified Theory post for greater detail), we’re all in orbit of this thing that happens while we’re making other plans. We all want a stable, nice, neat orbit but there are so many other people and factors involved that we rarely get it to work out quite that way.

For better or worse (and regardless of whether we ever get a piece of paper to that effect), Ole and I have committed to being equal partners and orbiting the Life system together. This may not always work well, but it’s too early to call it either success or failure. We haven’t crashed in flames but neither have we found ourselves to be “overnight successes”.

This is probably the bit where you ask “but where does disability come into this?”

Well, with my AS related issues combined with having been running around my orbit on my own for a long time, I have a very particular orbit (as does Ole from his being on his own for a long time). We now have to adjust how we approach everyday life (our orbits) by taking into account what the other does / wants to do / reacts to. We are now in orbit of each other as well as Life and it leads to some interesting, usually unintentional power struggles as we try to work out whose needs are most important at particular junctures.

ASIDE: For the record, I’m never going to agree that the need to buy at least ten books a month is important, but it’s his money, so hey ho…

Spending Time As Co-Asteroids

So, we’re co-orbiting life – or “co-asteroids” as working out the sub-titles made me think of it. But there are niggling little problems. We’re very different materials. Ole is very slow and considered, anxious about committing to things. I just don’t have time or spoons. I know I have a set amount of time before I crack about any given thing.

A case in point. You may remember I have mentioned a number of times that my limit in a supermarket is about half an hour. On Ole’s first stay in January, I overcame this once, kind of on purpose. I’m not entirely sure how but I managed it. Because Ole forgets that this is a problem for me, I’ve also had to put up with it at least three times since. The man can take literally hours to go around a supermarket.

Yes, literally. Because he wants to be sure he gets everything, because it’s all new to him as he’s in a foreign (to him) country, because he’s one of those people who needs time to think and process. I couldn’t give a flying monkey about any of those things come twenty-five minutes into a supermarket visit. This leaves me trailing around behind him with competing drives: flight to the car, fight – or possible manslaughter of my partner – and curling up in a whimpering ball in the middle of the clearest aisle.

After the last round of sharing videos simulating how other Aspies / AS diagnosed people find the supermarket, he may now understand this. But this wasn’t shared as a way to embarrass Ole (although, extra points for me if it did…) but as an illustration of how different people’s reactions to things can be. And thus how difficult it can be to learn to accommodate each other.

A Successful Orbit

Given that it can be difficult surviving Life on your own, how do you measure success when you’re trying to form an orbiting group? Well, I’m not entirely sure. It doesn’t really matter what other people’s relationships look like – what’s important is what ours looks like to me – and to Ole. As much as one partner can end up more dominant in a given situation, if the other isn’t happy, it’s not working. In orbit terms, the orbit has too much of a wobble for one person and, given we can choose these things, the partnership could be dissolved.

Unlike being on your own, I can’t go around advising people to push themselves a bit. Pushing while dancing around another asteroid could end up being the push that sends the group too far into the Life gravity well or splitting the group up. Although it could end up being the thing that pushes the group into something even better.

Yeah, maybe it pays to admit what didn’t work but, in saying so, does that encourage people to say “this relationship didn’t work”? If one partner is unwilling to listen to the other over a particular problem, is that enough to call time on the whole thing? Or is it something the group can learn to agree to disagree over? Also, be aware that any experience is a learning experience. If, for example, you have a tendency to react to bad news or opinions you disagree with by shouting first – no matter how reasonable you are after the information has been processed – your Aspie (or other) may have learnt not to discuss anything with you within two attempts of trying to do so. Alternatively, they may have learnt that they only way to get their point across is to throw a strop that’s just as big.

In the one person version of measuring success (Success and Mediocrity post) I did, I said of having escape routes:

Again, something I had to learn with experience was making contingency plans – and accepting I would occasionally have to do things that weren’t necessarily… polite. My contingency plan for attending any convention, conference or bootcamp is to accept that I may have to just put everything in my bag and leave. I also learnt that life is what happens when I’m making other plans. Failure happens, things go wrong. I do my best to make sure that this can be taken into account and won’t have a knock on effect for other people. I try not to fear this so much that it stops me doing something I want to do. If I’ve agreed to it, I will at least try it out.

However, escape routes tend to look suspiciously like “leaving the relationship” when there are difficulties talking things over. One of the biggest differences between Ole and I is that I have contingency plans coming out the caboose (look it up) but he looks at me blankly when I suggest there are alternatives. At best. Sometimes we argue about me repeatedly reminding him there are Other Ways and other possibilities.

DISCLAIMER: I have not taken to planning escaping the relationship. Ole, however, may not believe this.

But, as I said before about being one person trying to succeed: If you’re still here, you’re winning.

No-one Is A Mind Reader

Basically, communication and mutual respect is the key.

I do my best to communicate when and why I have a problem with things and Ole does too. Or, I think he does. He struggles to actual talk to me, in part because I think and speak that bit faster – at least in English. I struggle with the idea of telling him repeatedly due to this being nagging to some people, which is a Bad Thing.

I also need to remember to display that empathy thing more often. More precisely, as much as I may care, I need to express that I do more often. Instead of assuming he knows it already.

Or, translated into generalisations for the person with the invisible disability:

  • Tell the other person(s) if there’s a problem and why, slowly and clearly. You may need to repeat yourself multiple times if they have difficulty grasping why this is a problem for you.
  • You may also have to repeat yourself over multiple occasions because it doesn’t seem like a big deal to them. Allow for the vagaries of human memory and try to keep calm. They are not doing this on purpose.
  • Don’t forget that this works both ways. The other person(s) may have problems with a situation. Treat them with the same respect and care you would like to be treated with.
  • Try to understand the other person(s) and also say you do – or don’t – and why.

For the person who considers themselves normal:

  • Bad news, we don’t think you’re particularly normal, either.
  • For the love of whatever you believe in, if someone explains that they are having difficulties – and / or why – try to acknowledge it and also try to remember it. These admissions make people feel extremely vulnerable and having to repeat admissions is frustrating and belittling.
  • Don’t forget that this works both ways. If you have problems with a situation, try to explain it in a way that shows how important this is to you (with words).
  • If the other person(s) says they don’t understand, and why, then look for a way to explain it that’ll make sense to them.
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