Monday, June 26, 2006

Telling it how it is.

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.


marmiteboy said...

You are by far the wisest Golfish in the tank ;-)

Marcelle Proust said...

Excellent suggestions, Goldfish. But families do tend to goof up the best of intentions. I find it far harder to be calm with mine than I find it with other people.

ben said...

Indeed...some very wise advice on expressing and asserting one's whole person. it's refreshing to see such a complete perspective.

Attila the Mom said...

This is such a wonderful post. I truly think you should try to shop it around and get it published.

The topic of sexuality and disability is so underexplored in the mainstream.

I don't know about elsewhere, but in the US, it seems like some sort of steel gate of denial or puritanical "ickiness" comes down when parents try to find help to teach their kids about their own sexuality if they have disabilities.

It's a taboo.

Everybody thinks it's "darling" when the high school girls deign to pet and pat and hug my younger son because he's so "sweet" and "cute". As if his disability automatically makes him a eunich.

Three times in the last 6 years we've had para-educators (school aides who have no formal training in disability issues but are hired to make sure kids get to their classes and help with minor facilitating) formally object when we've signed our son up for health/sex education classes which are available age-appropriately every other year.

Did they think he was going to whip out his dick and run around trying to touch everybody with it?

No, they were trying to "protect" him.

Nobody wants to acknowlege that he's a physically healthy young man who has "urges" like the rest of us. It seems like they want to view him as a sexless teddy bear. It's infuriating on so many levels.

His dreams for his future aren't unreasonable by any means.

It's not like he wants to be a jet-pilot.

He likes people. He likes food. He thinks he'd like to work in the grocery or food service industry.

Everybody thinks that's hunky-dory.

But other than his severe-needs coordinator, it seems like everyone else blanches at his other desires.

He wants a wife. A companion. Someone to curl up in bed and cuddle with. Someone to be naked with if he feels like it. Someone to share a pillow with.

Why is that unreasonable?

Why does the idea freak some people out?

arrrghhh. Sorry for the rant.

I really do love your post.

spotted elephant said...

This is such a fantastic and needed post! You're so right about the emotional compoenent. I'd never thought about that.

pete said...

It's a long time since I heard anybody talking about fucking as 'press ups'.

All my romantic involvements have come about when I have been or about to become mad. Do you think more pheromones are produced when bonkers?

Well done on the post front as Jimmy from the Reggie Perrin series might have said.

The Goldfish said...

Thanks everyone. :-)

Mumpy I must confess that I am not all that good at practising what I preach here, but I think I'm getting better at it with time. :-)

Attila Your son's experience seems ludicrous. But I think that the most important thing as far as his sexual and romantic future is concenred is that his folks can see this and consider a love life not an unreasonable ambition for him. Which of course it isn't.

I have met disabled adults whose parents brought them up with the idea that love and sex simply wasn't going to be part of their lives, and anyway nobody would ever want them. Which seems immensely cruel, but I think that people did this genuinely hoping to somehow protect these young people. In some cases, of course, this protection often lead to disabled people not being able to protect themselves later on, physically or emotionally.

Pete I didn't mean having sex was like press-ups, but fact is, if a chap is physically incapable of press-ups, then that rules out certain sorts of sexual activity on account of what strength and co-ordination is required in which muscles, as it were.

As for being bonkers - guess it's just that mad, bad and dangerous to know romance you've got about you. ;-)

Sally said...

Masterfull post Goldfish, very realistic and positive - but I have been getting tied up in knots when attempting to comment - I think my stuckness boils down to it is different when you are over 50. There are more complications.

When couples stay together throughout their life, they accommodate the effects of ageing, and disability as Charles says.

Starting again, trying to start all over again, when one is older -over 50 (confidence in one's physical attractiveness takes real effort !) - and disabled, then add the practical and visual effects of a wheelchair - the chances of a new relationship are practically zero - just having the opportunity to talk to people (men) is complicated, let alone engaging in the possibility of dating.

That's partly why I blog (don't get scared gents) ... to make contact with people without having to face the daily automatic rejection that a wheelchair causes.

I am positive because I have good friends, and after over 50 years, I have the confidence to appreciate my own worth.

But the chances of a new significant other are very low.

But hey, I've had a few !!!
(Its late but I am posting this because I can't delete yet another comment.)

The Goldfish said...

Sally, I realise that things may be different over 50, but much of the way you feel about this may be at least partly due to the fact that you simply didn’t expect to be in this position.

I have noticed among my older friends that when they have been married for a long time and suddenly find themselves back in the market, their confidence is shattered - especially when that marriage wasn't terribly self-affirming.

Those who have spent a large proportion of the last twenty years single tend to have far more confidence; they knew they had the capacity to attract partners and lovers at thirty-five, forty, forty-five and fifty – so fifty five will be no different.

As I wrote before, these things are complex and wheelchairs don’t necessarily result in automatic rejection. In many ways, older men are more likely to be cool with that, and to be more open-minded and flexible. Younger men lack experience, are easily intimidated by difference and tend to be far more demanding of our energies. They want us to play a role in their lives; housewife, cook, mother to children, a source of income etc.

Older men are either old-fashioned miserable buggers or they have already learnt to make their own happiness; they're less likely to need you to look after them, or to fulfil any particular role other than lover and companion. There’s a popular myth that all older guys go for younger women, but it’s just not true. Some do, of course, but most have neither the opportunity nor indeed, the desire. Mostly because younger women, like younger men, tend to be far too demanding.

I'm not saying you'll defintely find love again, but chances very low? I wouldn't think so. I know very many men and women who have married or found life-partners in their fifties and beyond. My own great grandmother remarried at 75. Included in these folks I know are women who had less than satisfactory marriages lasting several decades, were practically abandoned in their fifties and genuinely thought that would be it.

And as Ella Wheeler Wilcox put it;

The first flower of the spring is not so fair
Or bright, as one the ripe midsummer brings.
The first faint note the forest warbler sings
Is not as rich with feeling, or so rare
As when, full master of his art, the air
Drowns in the liquid sea of song he flings
Like silver spray from beak, and breast, and wings.
The artist's earliest effort wrought with care,
The bard's first ballad, written in his tears,
Set by his later toil seems poor and tame.
And into nothing dwindles at the test.
So with the passions of maturer years
Let those who will demand the first fond flame,
Give me the heart's last love, for that is best.

Sally said...

Oh Goldfish, you've got me in tears (just little soft ones) with your own strong kindness, insight, and the poem.

I didn't mean to get personal, now find I am, so I trust to readers' goodwill and if there are those that feel this following comment is too personal, please go elsewhere; me and Goldfish and friends are ok with it.

To feed myself and bolster myself against the effects of the SC&H mess, I have spent the afternoon in the garden, (instead of desk work) and a skylark has kept me company, soaring above the comings and goings below, so the quoted poem was apt.

I have been divorced for seventeen years; for a far longer time than I was married - and I enjoyed being single again in my mid-thirties, when all the world seemed possible. Much of it was, even with the limitations of single parentdom. Then ten years ago I found what may possibly have been "the heart's last love", which was far stronger, deeper, connected, than my marriage had been, but that love has been dead for a few years. He was older than me - I thorough enjoyed the intellectual and sensual challenge that he was. No-one has come close since.

I am actually much happier, more myself, single. I feel more blessed in my life's encounters than perhaps do women who have been in a partnership all their adult lives, then find themselves alone, by whatever twist of fate, in their 50s. Theirs is a more difficult path I think than mine has been.

I am not despondent, but realistic. I am self sufficient and cannot imagine putting up with any man's idiosyncrasies that impinge too much on my own way of life. I find I have become too old for that. Or too discerning.

In recent years I have come across two predators, met those that only wanted housekeepers; who thought they would get sex because she must be desperate so she will put up with me; one who thought I would automatically consider leaving my home, my life, my 'bump' to fit in with his working and family life; two recently widowed men who are now afraid to talk, or be seen to be talking, to me, because I am single, when they were quite friendly to me with their wives around.

Goldfish, I agree and know, all the positives, but it is important to know that the negatives are real, and that one is alone not because of any fault, but because age and disability do weigh the scales a tad bit against another love. I hope it proves otherwise.

Blessings and thank you.