David at Growing Up With A Disabilty did a sterling job hosting the 3rd Disability Blog Carnival yesterday. The next one will be here, at Diary of a Goldfish, on Thursday 23rd November. You can make submissions for it (by Monday 20th, please) here or by e-mailing me.
The theme for this Carnival will be Different Ways of Going About Things. As always, any disability-related blog posts are welcome, but I am particularly interested in the ways in which people are able to the things they want to do by some method other than the usual methods which are frequently barred to us for one reason or another.
This could anything from how you use equipment or a neat way you have devised to manage something you wouldn't otherwise be able to do, right through to the ways in which, because of impairment, you have found a completely different way of looking at your life, what you want to do with it and how that might be achieved.
We are used to hearing a lot about what we can't do, the way in which impairments stop us doing very much of what is considered to be normal. But is there only one way of going about any given task? Are the expectations of a normal life all that they are made out to be? And might there be some richer adventure to be had along the road less travelled?
Friday, November 10, 2006
Suffolk
We had a lovely journey down to Suffolk; the light was absolutely gorgeous and even the concrete bridges looked nice. We also found the wormhole that allowed the journey to be achieved in just four hours. And we're going to see Alexander later on today. Hooray!
Wednesday, November 08, 2006
The Goldfish Guide to remembering your PIN
I recently got the PIN sorted out on my credit card; in the UK we have needed a Personal Identification Number to use a debit or credit card since February this year, but of course I haven’t bought anything in a real shop since then. I was thinking about this and my cognitive dysfunction and thought I would share my thoughts in case it might be useful to anyone else.
I should explain that there is very little information which I know at all times without having to think about it. For example, the way I remember my name is to picture the top left-hand corner of a sheet of lined A4 paper. The very first thing I think to do when presented with a sheet of paper is to write my name on it – something I would have been doing several times a day throughout my school career. I consider what it is I need to write in that corner and I remember what I am called. Which only takes a brief moment.
So obviously, I can't just glance at the PIN the bank sent me and hope to remember it next time I'm in a shop. But I've never had any problem with the PIN I use to get cash from the machine.
First off, you are much more likely to remember a PIN when you have chosen it yourself; if you have memory issues or dyslexia, there's probably not much point in trying to memorise whatever random numbers you were initially sent by the bank. Phone them up and pick your own number.
Some people have numbers they learnt as children which have no relevance today, but stick in the mind very easily; your parents' Co-Op number for example, or part of your first phone-number.
Failing that, the simplest method is to pick a significant year in the second millennium AD; 1066, 1492, 1603, 1812, 1984 etc. I imagine the bank would advise against using the year of your birth, marriage etc..
1812 and 1984 are particularly good because, in my mind at least, each is associated with a historic event, a book (War and Peace and 1984) and most crucially, a memorable piece of music (Tchaikovsky’s 1812 Overture and David Bowie’s 1984). And yet others are unlikely to guess this, unless those dates have any particular personal significance.
The other, less easy, but more secure method is to chose a sequence of numbers which represent some simple maths like 3721 (3 x 7 = 21). Similarly 9218, 6488, 6713 and so on. This gives you something more to work with than just four random numbers, and if you forget one you can still work it out. For example, if all I can remember is 369_. Well, I know that three and six can’t be made into anything with a 9 in that position and I don’t have enough room for the 12 which would be the next number in that sequence. Thus, it must represent 36 and 9 and the only sum I’ve got room for is 36 / 9 = 4, so 3694.
For extra measure, do write it down, as part of a made-up phone number in an address book, or as a pretend price for something you have taken a note of. But make sure it isn’t too prominent or obvious wherever it is.
I should explain that there is very little information which I know at all times without having to think about it. For example, the way I remember my name is to picture the top left-hand corner of a sheet of lined A4 paper. The very first thing I think to do when presented with a sheet of paper is to write my name on it – something I would have been doing several times a day throughout my school career. I consider what it is I need to write in that corner and I remember what I am called. Which only takes a brief moment.
So obviously, I can't just glance at the PIN the bank sent me and hope to remember it next time I'm in a shop. But I've never had any problem with the PIN I use to get cash from the machine.
First off, you are much more likely to remember a PIN when you have chosen it yourself; if you have memory issues or dyslexia, there's probably not much point in trying to memorise whatever random numbers you were initially sent by the bank. Phone them up and pick your own number.
Some people have numbers they learnt as children which have no relevance today, but stick in the mind very easily; your parents' Co-Op number for example, or part of your first phone-number.
Failing that, the simplest method is to pick a significant year in the second millennium AD; 1066, 1492, 1603, 1812, 1984 etc. I imagine the bank would advise against using the year of your birth, marriage etc..
1812 and 1984 are particularly good because, in my mind at least, each is associated with a historic event, a book (War and Peace and 1984) and most crucially, a memorable piece of music (Tchaikovsky’s 1812 Overture and David Bowie’s 1984). And yet others are unlikely to guess this, unless those dates have any particular personal significance.
The other, less easy, but more secure method is to chose a sequence of numbers which represent some simple maths like 3721 (3 x 7 = 21). Similarly 9218, 6488, 6713 and so on. This gives you something more to work with than just four random numbers, and if you forget one you can still work it out. For example, if all I can remember is 369_. Well, I know that three and six can’t be made into anything with a 9 in that position and I don’t have enough room for the 12 which would be the next number in that sequence. Thus, it must represent 36 and 9 and the only sum I’ve got room for is 36 / 9 = 4, so 3694.
For extra measure, do write it down, as part of a made-up phone number in an address book, or as a pretend price for something you have taken a note of. But make sure it isn’t too prominent or obvious wherever it is.
Monday, November 06, 2006
Secrets and Lies
I am very good at keeping secrets, but absolutely crap at telling lies. Never trust me with a secret about which someone is likely to ask me a direct question. I won’t say a word about you robbing the bank, I can sit through hours of discussion about who might have robbed the bank without given any indication of what I know. Just so long as nobody asks me “Do you know who robbed the bank?”
The killer is when I am particularly emotional about something. If I have heard some bad news about which I am supposed to be discrete and someone just happens to catch me when I seem upset and asks why, then it is as good as told. Which of course is a great problem, because bad news secrets are the most sensitive secrets there are. Fortunately I am not often burdened with bad news secrets, I have never been let down by my own confidants and bad news is usually only a secret for a short time; the dying person dies, the job is lost, the illness becomes visibly apparent, the struggling marriage fails - or indeed mends such that it doesn’t matter who knows about the bad patch.
Of course, I do manage to lie, but I lie very badly. I don’t understand this as I used to be able to act pretty well. Most of it is guilt, I think; whenever I lie I feel like I am assaulting the person to whom I am lying. It doesn’t matter if they’ll never know, it feels like a betrayal. Even when it comes to arranging surprises or buying presents for people, it is far easier to say, “I can’t tell you; it’s a secret.” than to use the simplest most plausible excuse.
Fortunately, the most successful lies are told, not through clever use of eye contact, tone of voice and body language, but simply because the recipient of the lie does not expect to be lied to. Most of the secrets that I am ever required to keep are ones which nobody suspects a thing about anyway and when they have asked, I have delivered the most clunky wooden fibs, lines far less convincing than “Is it raining? I didn’t notice.” at the end of Four Weddings and a Funeral (surely the most badly-delivered line in the history of film?) and the conversation has moved smoothly onwards.
This makes me pretty good at covering up for friends who are up to all sorts of mischief and indeed, my own mischief when I have the opportunity to get up to some. Unfortunately (or perhaps not), I will never be able to lie to AJ about anything. I used to be able to a bit on trivial matters, but it's gone completely now. Cannot be done.
Hmm. This post is necessarily obfuscated. It may sound like I am talking about nothing at all, but it is good to get out of the system.
In other news, Alexander has been involved in his first rock’n’roll car crash! Fortunately he remained asleep throughout, whilst his father sustained whiplash. Still gives me an excellent excuse to post this picture of Alexander looking somewhat alarmed in a rather fetching cardigan.
In a less dramatic nephew-related development, Alexander told me (literally, he gabbled on for some time before his mother translated) than he has a his first tooth coming through. Apparently it bothered him a little but now he is quite happy with it.
The killer is when I am particularly emotional about something. If I have heard some bad news about which I am supposed to be discrete and someone just happens to catch me when I seem upset and asks why, then it is as good as told. Which of course is a great problem, because bad news secrets are the most sensitive secrets there are. Fortunately I am not often burdened with bad news secrets, I have never been let down by my own confidants and bad news is usually only a secret for a short time; the dying person dies, the job is lost, the illness becomes visibly apparent, the struggling marriage fails - or indeed mends such that it doesn’t matter who knows about the bad patch.
Of course, I do manage to lie, but I lie very badly. I don’t understand this as I used to be able to act pretty well. Most of it is guilt, I think; whenever I lie I feel like I am assaulting the person to whom I am lying. It doesn’t matter if they’ll never know, it feels like a betrayal. Even when it comes to arranging surprises or buying presents for people, it is far easier to say, “I can’t tell you; it’s a secret.” than to use the simplest most plausible excuse.
Fortunately, the most successful lies are told, not through clever use of eye contact, tone of voice and body language, but simply because the recipient of the lie does not expect to be lied to. Most of the secrets that I am ever required to keep are ones which nobody suspects a thing about anyway and when they have asked, I have delivered the most clunky wooden fibs, lines far less convincing than “Is it raining? I didn’t notice.” at the end of Four Weddings and a Funeral (surely the most badly-delivered line in the history of film?) and the conversation has moved smoothly onwards.
This makes me pretty good at covering up for friends who are up to all sorts of mischief and indeed, my own mischief when I have the opportunity to get up to some. Unfortunately (or perhaps not), I will never be able to lie to AJ about anything. I used to be able to a bit on trivial matters, but it's gone completely now. Cannot be done.
Hmm. This post is necessarily obfuscated. It may sound like I am talking about nothing at all, but it is good to get out of the system.
In other news, Alexander has been involved in his first rock’n’roll car crash! Fortunately he remained asleep throughout, whilst his father sustained whiplash. Still gives me an excellent excuse to post this picture of Alexander looking somewhat alarmed in a rather fetching cardigan.In a less dramatic nephew-related development, Alexander told me (literally, he gabbled on for some time before his mother translated) than he has a his first tooth coming through. Apparently it bothered him a little but now he is quite happy with it.
Sunday, November 05, 2006
The fourth, the fifth, the minor fall and the major lift
My ability to appreciate music has returned this weekend which is rather wonderful and a sure sign that my brain is coming back on-line. Phew! There is a great temptation to embark on a tremendous catch-up exercise with all the e-mails I owe and all the blogs I want to write, but I have lots to do between now and Wednesday when we head down South and my head is still pretty muzzy.
The computer will travel with me, so even if I don't write again before I go, I will be around.
In the meantime, Sage and Ballastexistenz both wrote something about perfection and perfectionism this weekend. Completely different angles, but both well worth reading.
The computer will travel with me, so even if I don't write again before I go, I will be around.
In the meantime, Sage and Ballastexistenz both wrote something about perfection and perfectionism this weekend. Completely different angles, but both well worth reading.
Friday, November 03, 2006
The Disability Hierarchy
Feeling a little brighter now, thank you. Cogs in motion, but could probably do with a little mental WD40.
I wrote a post last Friday about the disability hierarchy; the way in which not only are disabled people subject to discriminatory treatment as a group, but that some disabled people are treated with far more discrimination than others. I was feeling very foggy that day and decided that being a sensitive and complex subject, I should take it down and sit on it until I was feeling brighter. I've sat on it for a week and edited it some, but if you have read something very similar to this before, my apologies. I also hope to goodness that it makes sense.
Since last week, Blue at the Gimp Parade has posted a bit about this, describing some of the recent events that contributed to my wanting to post on this.
Blue attempts to separate out the issue of legitimacy out from the other ways in which we are rated against one another. I don’t think this is possible. I feel the main issue, as with all hierarchies that are applied to groups who experience discrimination, is to do with manageability. Which of this group, who people feel uncomfortable about, are more or less manageable.
For other groups, the issue of manageability is usually about conformity to a type. Historically, we have liked gay men who conform to stereotype; camp entertainers, eccentrics. Only when they want to behave like 'normal' people have we felt threatened; we can’t easily identify them, you see. Conversely, our society positively revels in depictions of lesbianism, so long as the women defy the stereotype to look and behave like the epitome of heterosexual femininity. Preferably without any clothes on.
In the context of disability, manageability is tied up primarily with worthiness, of which legitimacy is only part. After all, disabled people are such a diverse group of people that the entire existence of any hierarchy rests with the medical or charity model of disability. If disability is a purely an issue of medical dysfunction and need, if we are seen as people with disabilities* and the problems belong to us as individuals, then the individual is fair game to be assessed for worthiness by society. As we are not a society of doctors, medical fact and functional impairment don’t have a great deal of bearing on the assessments we make.
Our contradictory attitudes towards mental health are perhaps the best illustration of this. On the one hand, we doubt the legitimacy of mental ill health; those people are lazy or lack moral fibre and should pull themselves together. That mental health can stop a person being able to work, to care for themselves to get about without help - that mental health can cause as severe a degree of functional impairment as any physical condition there is - well, we don't buy it. On the other hand, there is great nervousness about people with mental ill health, especially combined with other social factors; in the UK, black men are six times more likely to be sectioned (forcibly detained) under the Mental Health Act than anyone else. People with severe mental ill health may be considered legit, but they are considered unmanageable. Thus people with mental ill health are often completely excluded from discussions about disability.
A more subtle example involves weight. Lots of disabled people are overweight for the obvious reason that the less exercise you get and the less choices you have about diet, the heavier you are likely to be. However, being noticeably tubby automatically calls legitimacy into question because we associate weight with laziness; it’s not that you can’t fulfil this task, you just can’t be arsed. Even where impairments are acknowledged, because weight is something we can see, because we understand weight as an effect of 'gluttony' and one that effects health, we are likely to assume that at least part of your ‘disability’ is self-inflicted. And in any case, weight also makes a person look rather comfortable; we like our people with disabilities to look in need.
Conversely, we don’t like them to look too bad. The recent controversy over Michael J. Fox’s television appearance strikes me not about whether he purposely failed to minimise the effects of his condition, but the fact that he allowed himself to be seen shaking and with slurred speech. Such visibility makes us uncomfortable. Speech impairments and other communication issues make us uncomfortable. Dribbling, sudden movements and deviance from social protocols make us uncomfortable. This has nothing to do with legitimacy; it’s just not cute, it’s not manageable.
For some reason, I make people feel uncomfortable when I use a manual wheelchair. My arms being as useful as my legs, I cannot self-propel. So in situations where I need a wheelchair but cannot transport or hire a power-chair, I need to be pushed. Whilst in other circumstances, being a wheelchair-user affords me immense social privilege above the other 95% of disabled people who are not wheelchair-users**, being unable to take responsibility for my own movement sends some sort of message which means that folks are much less likely to make eye-contact or to speak to me directly. This effect is compounded if my pusher is the right age to be my parent – I guess people must wonder if I couldn’t have been shrunk for their convenience.
I really could go on with examples of the subtle and not-so-subtle ways these judgements are made, all of the time, and sometimes by disabled people themselves (I recently read an article where someone with physical impairments complained of being treated like a retard with leprosy - fantastic!).
If disability is seen as a social experience, then people are qualified not by the degree of dysfunction of by the palatability of their medical diagnoses, but by their social and political experiences as people who happen to have impairments of one type of another. No person with dyslexia could compete with someone with spinal cord injury on sheer pathos, but there are contexts in which a person with dyslexia is more disabled than a person with SCI. As a wheelchair-user, there are many instances in which I am far less disabled than someone who is able to walk further than I am but with pain or other difficulty.
Since this definition of disability varies massively according to context, it is pretty much impossible to say who is more or less disabled – although certainly some of us are more often and more profoundly disabled than others. Personally, I have a moderate degree of impairment, but since I hardly ever go out, I am not nearly as disabled as a lot of people with relatively minor impairments who have to tackle transport, the workplace, colleagues, shops and other public buildings on a daily basis.
The very thing that disabled people are fighting against is being judged according to impairment as opposed to the content of our character. Any kind of hierarchy, any speculation about authenticity of an individual disabled person goes directly against that.
* I don't mean to suggest that those who adopt people first language have such a view of disabled people, but the phrase people with disabilites inevitably defines disability as a problem with the individual. See also A brief guide to the language of disability.
** This is naturally a controversial statistic according to how one defines the wheelchair-user and how one defines the disabled person. 4 or 5% of disabled people being wheelchair-users were the most common stats I found - the highest was 8%, the lowest 3%.
I wrote a post last Friday about the disability hierarchy; the way in which not only are disabled people subject to discriminatory treatment as a group, but that some disabled people are treated with far more discrimination than others. I was feeling very foggy that day and decided that being a sensitive and complex subject, I should take it down and sit on it until I was feeling brighter. I've sat on it for a week and edited it some, but if you have read something very similar to this before, my apologies. I also hope to goodness that it makes sense.
Since last week, Blue at the Gimp Parade has posted a bit about this, describing some of the recent events that contributed to my wanting to post on this.
Blue attempts to separate out the issue of legitimacy out from the other ways in which we are rated against one another. I don’t think this is possible. I feel the main issue, as with all hierarchies that are applied to groups who experience discrimination, is to do with manageability. Which of this group, who people feel uncomfortable about, are more or less manageable.
For other groups, the issue of manageability is usually about conformity to a type. Historically, we have liked gay men who conform to stereotype; camp entertainers, eccentrics. Only when they want to behave like 'normal' people have we felt threatened; we can’t easily identify them, you see. Conversely, our society positively revels in depictions of lesbianism, so long as the women defy the stereotype to look and behave like the epitome of heterosexual femininity. Preferably without any clothes on.
In the context of disability, manageability is tied up primarily with worthiness, of which legitimacy is only part. After all, disabled people are such a diverse group of people that the entire existence of any hierarchy rests with the medical or charity model of disability. If disability is a purely an issue of medical dysfunction and need, if we are seen as people with disabilities* and the problems belong to us as individuals, then the individual is fair game to be assessed for worthiness by society. As we are not a society of doctors, medical fact and functional impairment don’t have a great deal of bearing on the assessments we make.
Our contradictory attitudes towards mental health are perhaps the best illustration of this. On the one hand, we doubt the legitimacy of mental ill health; those people are lazy or lack moral fibre and should pull themselves together. That mental health can stop a person being able to work, to care for themselves to get about without help - that mental health can cause as severe a degree of functional impairment as any physical condition there is - well, we don't buy it. On the other hand, there is great nervousness about people with mental ill health, especially combined with other social factors; in the UK, black men are six times more likely to be sectioned (forcibly detained) under the Mental Health Act than anyone else. People with severe mental ill health may be considered legit, but they are considered unmanageable. Thus people with mental ill health are often completely excluded from discussions about disability.
A more subtle example involves weight. Lots of disabled people are overweight for the obvious reason that the less exercise you get and the less choices you have about diet, the heavier you are likely to be. However, being noticeably tubby automatically calls legitimacy into question because we associate weight with laziness; it’s not that you can’t fulfil this task, you just can’t be arsed. Even where impairments are acknowledged, because weight is something we can see, because we understand weight as an effect of 'gluttony' and one that effects health, we are likely to assume that at least part of your ‘disability’ is self-inflicted. And in any case, weight also makes a person look rather comfortable; we like our people with disabilities to look in need.
Conversely, we don’t like them to look too bad. The recent controversy over Michael J. Fox’s television appearance strikes me not about whether he purposely failed to minimise the effects of his condition, but the fact that he allowed himself to be seen shaking and with slurred speech. Such visibility makes us uncomfortable. Speech impairments and other communication issues make us uncomfortable. Dribbling, sudden movements and deviance from social protocols make us uncomfortable. This has nothing to do with legitimacy; it’s just not cute, it’s not manageable.
For some reason, I make people feel uncomfortable when I use a manual wheelchair. My arms being as useful as my legs, I cannot self-propel. So in situations where I need a wheelchair but cannot transport or hire a power-chair, I need to be pushed. Whilst in other circumstances, being a wheelchair-user affords me immense social privilege above the other 95% of disabled people who are not wheelchair-users**, being unable to take responsibility for my own movement sends some sort of message which means that folks are much less likely to make eye-contact or to speak to me directly. This effect is compounded if my pusher is the right age to be my parent – I guess people must wonder if I couldn’t have been shrunk for their convenience.
I really could go on with examples of the subtle and not-so-subtle ways these judgements are made, all of the time, and sometimes by disabled people themselves (I recently read an article where someone with physical impairments complained of being treated like a retard with leprosy - fantastic!).
If disability is seen as a social experience, then people are qualified not by the degree of dysfunction of by the palatability of their medical diagnoses, but by their social and political experiences as people who happen to have impairments of one type of another. No person with dyslexia could compete with someone with spinal cord injury on sheer pathos, but there are contexts in which a person with dyslexia is more disabled than a person with SCI. As a wheelchair-user, there are many instances in which I am far less disabled than someone who is able to walk further than I am but with pain or other difficulty.
Since this definition of disability varies massively according to context, it is pretty much impossible to say who is more or less disabled – although certainly some of us are more often and more profoundly disabled than others. Personally, I have a moderate degree of impairment, but since I hardly ever go out, I am not nearly as disabled as a lot of people with relatively minor impairments who have to tackle transport, the workplace, colleagues, shops and other public buildings on a daily basis.
The very thing that disabled people are fighting against is being judged according to impairment as opposed to the content of our character. Any kind of hierarchy, any speculation about authenticity of an individual disabled person goes directly against that.
* I don't mean to suggest that those who adopt people first language have such a view of disabled people, but the phrase people with disabilites inevitably defines disability as a problem with the individual. See also A brief guide to the language of disability.
** This is naturally a controversial statistic according to how one defines the wheelchair-user and how one defines the disabled person. 4 or 5% of disabled people being wheelchair-users were the most common stats I found - the highest was 8%, the lowest 3%.
Wednesday, November 01, 2006
Status: Disconnected
We are heading down south this time next week and I’m not going to get my book finished before then. Still, I have made quite a bit of progress and restored some of my lost confidence in the end being in sight. The reasons it hasn’t worked…
It hasn’t worked because I have had a cold on and off for the last month, accompanied many days of thick fog where very little could be achieved. It hasn’t worked because my good days aren’t quite as consistently good as I thought they might be. And it hasn’t worked because the less mental energy I have, the greater proportion of that energy I feel compelled to use on communication.
I have been pondering this latter truth, especially during the last few days where I have felt as if several of my wires have been pulled. I miss being able to communicate more than I miss being able to work. Part of this is the fact that when I can do as much as this, as much as I am doing today – these paragraphs it has taken all day so far to write – then to do the same on my book would be a drop in the ocean. And anyway, I might decide to rewrite that completely on a brighter day, whereas I won’t have to revisit this ever again.
Part of it is this particular type of boredom that descends. It isn’t restlessness, because it is very easy to occupy my little brain. Only it is not easy to occupy it in any meaningful way. I might spend my time watching favourite films, but I won’t follow the plot and will struggle to get involved. I listen to comedy programmes on the radio and I don’t get any of the jokes (uh… comedy programmes I might otherwise laugh at, that is). And yet it’s not as if I am in a depression where I have lost interest in anything, so I get very frustrated. I need to engage with other people in some little way.
Which is a great irony. On an exceptionally good day, I might happily lock myself up with my work and not think of other people. On a bad day, when I am least able to communicate and completely unable to hold a meaningful conversation, I want that more than anything.
It hasn’t worked because I have had a cold on and off for the last month, accompanied many days of thick fog where very little could be achieved. It hasn’t worked because my good days aren’t quite as consistently good as I thought they might be. And it hasn’t worked because the less mental energy I have, the greater proportion of that energy I feel compelled to use on communication.
I have been pondering this latter truth, especially during the last few days where I have felt as if several of my wires have been pulled. I miss being able to communicate more than I miss being able to work. Part of this is the fact that when I can do as much as this, as much as I am doing today – these paragraphs it has taken all day so far to write – then to do the same on my book would be a drop in the ocean. And anyway, I might decide to rewrite that completely on a brighter day, whereas I won’t have to revisit this ever again.
Part of it is this particular type of boredom that descends. It isn’t restlessness, because it is very easy to occupy my little brain. Only it is not easy to occupy it in any meaningful way. I might spend my time watching favourite films, but I won’t follow the plot and will struggle to get involved. I listen to comedy programmes on the radio and I don’t get any of the jokes (uh… comedy programmes I might otherwise laugh at, that is). And yet it’s not as if I am in a depression where I have lost interest in anything, so I get very frustrated. I need to engage with other people in some little way.
Which is a great irony. On an exceptionally good day, I might happily lock myself up with my work and not think of other people. On a bad day, when I am least able to communicate and completely unable to hold a meaningful conversation, I want that more than anything.
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