I was harping on about sex and disability and got to thinking about the ways disabled people can communicate our limitations. I meant this to be in the context of sexual or romantic relationships, but really it applies much more generally. I also realise some of this advice may seem glaringly obvious, but if it is down here, then it hasn’t been always obvious to me.
It is of course based on the premise that there is nothing to be gained by pretending that your impairment doesn’t exist or is not so severe as it is. Doing this greatly increases the chances of overexertion, embarrassment and awkwardness, physical danger, causing upset or offence to other people and generally having a bad time. This is especially the case with close friends and lovers because these people expect you to trust them and in turn, trust you to tell them anything they need to know.
Nobody wants to make a song and dance about their medical problems or impairments, but the only way to reduce the impact these things is to put certain steps in place. Part of that is to give other people the relevant information. I find the following rules to be extremely useful:
1. Do not include unnecessary medical information.
When people used to ask what was wrong with me, my heart used to sink. This is because I felt that (a) I was obliged to give an honest answer and (b) I was obliged to answer with complicated medical information that the questioner was unlikely to fully comprehend.
In fact, apart from doctors and perhaps my next of kin, nobody needs to know my medical diagnosis. And whilst labels by themselves are no problem, folks do get distracted by this stuff; So what causes that then? Will you get better? Is it going to kill you? Is it contagious? Do you think perhaps the government is trying to poison you as part of a biological weapons experiment?
All these questions and more, I have been asked. None of these effect the way I live my life. And this is one of the main reasons I avoid mention of my diagnosis on the blogosphere (that and the fact that I think I am being poisoned by the government and don’t want them to know I know…).
If you are in any kind of relationship of trust, all a person needs to know is the practical effect of your condition or impairment. Providing a diagram of why this is the case will distract them and make it more difficult for them to take it in. If the medical side is of interest, save that for another conversation.
2. Do not include unnecessary emotional information.
There will come a time in any relationship where you sit down, get drunk and describe your distressing childhood, your tragic accident, your narrow escape from the jaws of death and how you recovered to drag yourself up Ben Nevis by the strength of your little finger.
Like medical information, this stuff is a big distraction. Give people a choice between a factual bit of information and an emotional piece of information, they’ll go for the emotional one and forget everything else. If you say, “I had a nasty accident when I was young and I can’t bend in the middle.”
You’ll get, “My god! What happened?!”
And you’ll have to explain all about it, answer further questions. And after profound expressions of sympathy and admiration, the other person will ask you to pick something up off the floor, having completely forgotten that you can’t bend in the middle.
Use calm, matter-of-fact language. For example, when describing pain, you don’t need to say, “It really really hurts,” merely, “It hurts and I can only stand for a moment” or whatever is relevant to you. I know it may sound silly, but anything which inspires sympathy is going to make it more difficult for someone to take in facts.
3. Keep your feelings in word form.
If you do feel that the piece of information you need to get across is a big deal, or if it makes you very nervous to talk about the subject, it is far better to say as much without it actually being self-evident. It is far better to calmly say, “I’m really worried how you might feel about X.” than to turn bright red, start shaking and express whatever your problem is in a squeaky voice.
The latter looks so uncomfortable that the other person is going to wish to change the subject and put you out of your misery. They are not going to wish to return to the subject because they won’t want to upset you. If you can express your concern in words but calmly, then you have revealed your vulnerability but are still able have a conversation about it. A degree of vulnerability can be attractive; terror is not.
Similarly, if you become frustrated when people let you down and ignore your limitations, state it in plain words, “I am frustrated/ angry/ disappointed.” Losing your temper will cause others to be defensive. And whatever you do, don’t sulk or make a complaint in a roundabout way – if people have forgotten or ignored your limitations, only a verbal reminder is going to get the message across.
4. Give practical examples.
Some limitations like pain, fatigue and perhaps most especially limitations related to mental ill health really need spelling out. Everyone gets achey, everyone gets tired and everyone feels sad or anxious from time to time. You have to make sure they know your problem is much more than that.
The best way of getting any limitation across is to give a real-life example of practical consequences – this is the case whether talking to a potential lover, a doctor or filling in your DLA forms. As far as social and romantic situations are concerned, an example might be that instead of saying, “I am tired all the time!” you might say, “I have a very limited stamina, so I may have to go home early.” Instead of saying, “I’m terrified of talking on the phone!” you might say, “On a bad day, I have to let the answer-machine pick up my calls for me.”
You can also use this to get across information which may effect sex, without actually saying, “If we’re going to have sex tonight, you ought to know…” For example, some folks may mention that their medication effects their appetite, others may mention the fact that they can’t do press-ups. Okay, I just thought of half a dozen terrible euphemisms, but I’m sure there are ways of subtly getting across that you have a limitation in the bedroom department. Now I've got the giggles.
5. Be enthusiastic
I am not suggesting that this should all come out in one conversation, but should trickle out over time. Some of this stuff has to be repeated, or reapplied to new situations.
One thing I would recommend is to always try to express enthusiasm about any suggestions people make - unless you genuinely don't want to be involved. Sometimes when someone suggests something which is either impossible for you or would cause immense difficulty, it is tempting to make out you don't fancy it, or even be angry at the suggestion. Unfortunately, as with sulking, other people may struggle to figure this out, and assume you're not interested in anything. Disinterest, rather than incapacity, is what makes a person seem boring.
So, when someone invites you skydiving, your answer should always be
"Oh, I would love to go skydiving! That sounds fantastic! Unfortunately, you have forms from your doctor to say you are medically fit and mine would never go along with that."
It also helps to blame someone else but...
6. Never use your impairment as an excuse
I guess we all do, sooner or later, but this can be immnensely costly if those we rely on figure this out. Especially if you have an invisible impairment, the disadvantages of which Lady Bracknell has described. If you want to get out of something, but wish to spare feelings, there are plenty of other excuses to be had. A policy of honesty is ideal, but certainly non-disabled people manage to excuse themselves from activities without too much trouble - so can we.
7. Be assertive
This is very difficult to explain, and highly subjective, so I will discuss a real example involving not lovers or friends, but family:
When I was down south, my sister came to stay for twenty-four hours. I was having a bad day, but the others fancied going out. So, during those few hours which may yet be the only time we see R this year, my Mum, Dad and Rosie decided to go out for a pub lunch without us. There wasn’t anywhere specific they wanted to go, just out of the house for a bit. They did of course ask, “You don’t mind if we go out, do you?” more than once, but what could we say?
Unfortunately, especially as far as my family are concerned, I am absolutely incapable of standing up and saying, “Yeah I do mind; you don’t need to go out, but I need to stay here. This is a rare opportunity for us to be together. If we are such dreadful company, we will pack up and go as soon as my health permits so you need suffer us no longer than absolutely necessary!”
The fear is of course that people are going to then grudgingly hang around, that folks are going to resent you. So instead, I avenged myself by finishing the cake for lunch so there was none left for anyone else. Ha ha ha! Ha ha ha! Ha ha ha ha ha!
If any of the family are reading this, it is forgotten, really it was no problem; it just came to mind again as an example. Honest. Really. Ha ha ha! Ha ha ha! Ha ha ha ha ha!
Thing is, there must have been a way I could have handled this without this passive-aggressive nonsense. Some middle way between saying nothing and being noticeably angry. Uh…
“You don’t mind if we go out, do you?”
“Well, I would like to go out myself, just to spend time with you and especially Rosie who is only here for a short time. Unfortunately, I really can’t, I’m really not up to it today. But I’m not so ill that I can’t enjoy your company. I am sure there are nice things to eat in the house – like that cake for instance.”
Then if they said, “Oh but we’re bored around the house, we want to go out.” Well, then one has a right to be cross, and express disappointment. However, I think that if I had managed the above rather than saying nothing at all, they would have hung around without resentment and everyone would have been happy.