A rant
I'm angry.
I've been angry since Thursday afternoon, and I'm still angry.
I have ranted to the people who know about these things and who are professionals in the same field. They have confirmed that, faced with the same situation, they would also be angry. Very angry. This knowledge, although gratifying, has not, unfortunately, rendered me significantly less angry.
So this is blogging as catharsis. Don't feel under any obligation to read any further.
In a nutshell, I am being barracked by a severely non-disabled fuckwit who is labouring under the delusion that equality in employment for people who "suffer from a disability" equates to letting them carry on being worse than useless at a particular job because it's rotten for them that they are afflicted with this terrible condition, so we should be kind and forgiving. Even when they do something so staggeringly unprofessional that there aren't enough words in the world to describe one's reaction to it.
Now, I'm probably re-stating here what I've said many times before, but I need to write it even if you don't need to read it.
Disability equality is about disabled people being treated equally.
The DDA is, admittedly, the only piece of equality legislation which permits positive discrimination. But it only permits positive discrimination up to the point at which the people it protects are receiving equal treatment to the rest of society.
From an employment perspective, this means that someone covered by the DDA has the right to have reasonable adjustments made which will put them on a level playing field with their non-disabled peers. Reasonable adjustments are statutory positive discrimination.
What the DDA does not demand - and neither should it - is that disabled people should be paid to work in jobs for which they are completely unsuited, and that their employers should turn a blind eye to how rubbish they are at what they're being paid to do because, oh God, it must be dreadful and appalling to "suffer from a disability".
We are the only minority group for whom people feel sorry: this makes disability discrimination very difficult to tackle. The severely non-disabled fuckwit to whom I referred earlier thinks he is supporting the right to equality of the hopelessly crap crip in question by insisting that it would be unkind to discipline him for behaviour which, if it came from a non-disabled person, would immediately and unquestionably be subject to disciplinary procedures. Can I persuade him that his approach is the one which is disablist, not mine? Of course I can't. Pity is so inherent in his response to impairment that it's impossible for him to get past it.
What's worse is that so many disabled people in employment fall into exactly the same trap, thereby confirming the prejudice. When I pulled someone up recently for his use of the word "handicapped" in a training module, he wanted to argue the toss with me about whether it's an acceptable word or not. "I spoke to a woman in our office who is wheelchair-bound, and she confirmed that she sees her wheelchair as a handicap.". Oh, right. So, just because this woman feels sorry for herself, and is as yet uneducated in disability equality, that makes it OK for an organisation which has publicly declared itself to be allied with the social model of disability to use the "h" word in its publications, does it?
And why exactly is it that, if I were quality assuring your draft training module with my other professional hat on, you wouldn't dream of telling me you think you were right all along and I'm just being needlessly picky? But as soon as it comes to disability equality, well, that's about people, isn't it? And, because you've got an opinion about things which are about people, you naturally assume that the expertise I've gained over more than a decade working in disability equality is also just an opinion and, as such, no more valid than yours? I mean, God forbid you should recognise that expertise in equality should be accorded the same degree of professional respect as expertise in any other technically-demanding professional specialism.
Ahem. Anyway. Back to the topic in hand.
In employment, as in every other aspect of the average crip in the street's life, your thinking will remain muddled unless you have grasped the difference between equality (something to which you are legally entitled) and the impact of your impairment/s (something which the law can't alter.)
If equality is what you are after (and I would very much hope that it is), you need to recognise that you will not achieve it by presenting your colleagues with a four-page essay on what it is like to have to live with a hideous impairment.
The acrobatics you have to perform in order to get your knickers on in the morning are your business. I work with a team of people I like and respect, but I can tell you now that I don't want to think about how any of them clean their bums after they've had a poo. And, despite the fact that my own approach to this very personal task will be markedly different from theirs, I'm pretty damn sure that they wouldn't want to think about me doing it, either.
I'm even more sure that there is nothing on God's green earth which could persuade me to tell them about it.
And yet I have lost count of the number of personal stories of that nature which I have seen in the workplace over the years. Groups of disabled staff have concluded that things would be better for them at work if their colleagues had a better understanding of what they go through on a daily basis. In other words, they want their colleagues and managers to feel sorry for them, and make allowances accordingly.
I've said it before, and I'll say it again. (What is it Heathcliff says? "I repeat it til my tongue stiffens"? Something like that.)
You will never be considered to be equal by people who feel sorry for you.
I can't stop you feeling sorry for yourself. (And, if you think I don't often feel sorry for myself, you are severely mistaken.) But I will point out that we are the only minority group which makes the illogical assumption that telling people - in gory detail - what it's like to be us will make them treat us as equals. Do our LGBT colleagues publish articles for their colleagues to read about what it's like making love to a same-sex partner? Of course they don't. Their colleagues don't want to know, and they don't want their colleagues to know.
But us? Oh, we write things like, "I can barely move when I wake up in the morning. My husband has to help me get dressed. Coming down the stairs is very painful for me.".
And, despite the fact that the minutiae of our personal lives is nobody else's business, most people will lap that sort of detail up greedily and then look round for more. Because cripdom exerts a curious fascination over non-disabled people. Encourage them to see you as a collection of intriguing symptoms and revolting bodily oozings rather than just as a colleague who is entitled to various adjustments, and they will do so. You might as well just set yourself up in a booth at the end of your nearest pier and be done with it.
Look. It's like this. Even on those occasions when the DDA is firing on all cylinders in your workplace, the most it will achieve is what it was designed to achieve: it will eradicate discrimination against you.
It won't make your impairment go away.
It won't allow you to do any job you like the look of, regardless of whether you have the necessary qualifications or aptitude.
It also won't allow you to do any job you like the look of, regardless of whether it is feasible to make sufficient adjustment for you to be able to perform in that role.
Life isn't fair. Disability equality won't enable you to take part in an Olympic skipping contest if your legs are paralysed. Disability equality won't "make you better". It won't solve all your problems. You will still have to live with your impairment. That will be easier than it is now but, in the vast majority of cases, it still won't be easy.
And we won't get equality at all if we can't resist encouraging the normies to pity us.
Rant mode now disabled.
I've been angry since Thursday afternoon, and I'm still angry.
I have ranted to the people who know about these things and who are professionals in the same field. They have confirmed that, faced with the same situation, they would also be angry. Very angry. This knowledge, although gratifying, has not, unfortunately, rendered me significantly less angry.
So this is blogging as catharsis. Don't feel under any obligation to read any further.
In a nutshell, I am being barracked by a severely non-disabled fuckwit who is labouring under the delusion that equality in employment for people who "suffer from a disability" equates to letting them carry on being worse than useless at a particular job because it's rotten for them that they are afflicted with this terrible condition, so we should be kind and forgiving. Even when they do something so staggeringly unprofessional that there aren't enough words in the world to describe one's reaction to it.
Now, I'm probably re-stating here what I've said many times before, but I need to write it even if you don't need to read it.
Disability equality is about disabled people being treated equally.
The DDA is, admittedly, the only piece of equality legislation which permits positive discrimination. But it only permits positive discrimination up to the point at which the people it protects are receiving equal treatment to the rest of society.
From an employment perspective, this means that someone covered by the DDA has the right to have reasonable adjustments made which will put them on a level playing field with their non-disabled peers. Reasonable adjustments are statutory positive discrimination.
What the DDA does not demand - and neither should it - is that disabled people should be paid to work in jobs for which they are completely unsuited, and that their employers should turn a blind eye to how rubbish they are at what they're being paid to do because, oh God, it must be dreadful and appalling to "suffer from a disability".
We are the only minority group for whom people feel sorry: this makes disability discrimination very difficult to tackle. The severely non-disabled fuckwit to whom I referred earlier thinks he is supporting the right to equality of the hopelessly crap crip in question by insisting that it would be unkind to discipline him for behaviour which, if it came from a non-disabled person, would immediately and unquestionably be subject to disciplinary procedures. Can I persuade him that his approach is the one which is disablist, not mine? Of course I can't. Pity is so inherent in his response to impairment that it's impossible for him to get past it.
What's worse is that so many disabled people in employment fall into exactly the same trap, thereby confirming the prejudice. When I pulled someone up recently for his use of the word "handicapped" in a training module, he wanted to argue the toss with me about whether it's an acceptable word or not. "I spoke to a woman in our office who is wheelchair-bound, and she confirmed that she sees her wheelchair as a handicap.". Oh, right. So, just because this woman feels sorry for herself, and is as yet uneducated in disability equality, that makes it OK for an organisation which has publicly declared itself to be allied with the social model of disability to use the "h" word in its publications, does it?
And why exactly is it that, if I were quality assuring your draft training module with my other professional hat on, you wouldn't dream of telling me you think you were right all along and I'm just being needlessly picky? But as soon as it comes to disability equality, well, that's about people, isn't it? And, because you've got an opinion about things which are about people, you naturally assume that the expertise I've gained over more than a decade working in disability equality is also just an opinion and, as such, no more valid than yours? I mean, God forbid you should recognise that expertise in equality should be accorded the same degree of professional respect as expertise in any other technically-demanding professional specialism.
Ahem. Anyway. Back to the topic in hand.
In employment, as in every other aspect of the average crip in the street's life, your thinking will remain muddled unless you have grasped the difference between equality (something to which you are legally entitled) and the impact of your impairment/s (something which the law can't alter.)
If equality is what you are after (and I would very much hope that it is), you need to recognise that you will not achieve it by presenting your colleagues with a four-page essay on what it is like to have to live with a hideous impairment.
The acrobatics you have to perform in order to get your knickers on in the morning are your business. I work with a team of people I like and respect, but I can tell you now that I don't want to think about how any of them clean their bums after they've had a poo. And, despite the fact that my own approach to this very personal task will be markedly different from theirs, I'm pretty damn sure that they wouldn't want to think about me doing it, either.
I'm even more sure that there is nothing on God's green earth which could persuade me to tell them about it.
And yet I have lost count of the number of personal stories of that nature which I have seen in the workplace over the years. Groups of disabled staff have concluded that things would be better for them at work if their colleagues had a better understanding of what they go through on a daily basis. In other words, they want their colleagues and managers to feel sorry for them, and make allowances accordingly.
I've said it before, and I'll say it again. (What is it Heathcliff says? "I repeat it til my tongue stiffens"? Something like that.)
You will never be considered to be equal by people who feel sorry for you.
I can't stop you feeling sorry for yourself. (And, if you think I don't often feel sorry for myself, you are severely mistaken.) But I will point out that we are the only minority group which makes the illogical assumption that telling people - in gory detail - what it's like to be us will make them treat us as equals. Do our LGBT colleagues publish articles for their colleagues to read about what it's like making love to a same-sex partner? Of course they don't. Their colleagues don't want to know, and they don't want their colleagues to know.
But us? Oh, we write things like, "I can barely move when I wake up in the morning. My husband has to help me get dressed. Coming down the stairs is very painful for me.".
And, despite the fact that the minutiae of our personal lives is nobody else's business, most people will lap that sort of detail up greedily and then look round for more. Because cripdom exerts a curious fascination over non-disabled people. Encourage them to see you as a collection of intriguing symptoms and revolting bodily oozings rather than just as a colleague who is entitled to various adjustments, and they will do so. You might as well just set yourself up in a booth at the end of your nearest pier and be done with it.
Look. It's like this. Even on those occasions when the DDA is firing on all cylinders in your workplace, the most it will achieve is what it was designed to achieve: it will eradicate discrimination against you.
It won't make your impairment go away.
It won't allow you to do any job you like the look of, regardless of whether you have the necessary qualifications or aptitude.
It also won't allow you to do any job you like the look of, regardless of whether it is feasible to make sufficient adjustment for you to be able to perform in that role.
Life isn't fair. Disability equality won't enable you to take part in an Olympic skipping contest if your legs are paralysed. Disability equality won't "make you better". It won't solve all your problems. You will still have to live with your impairment. That will be easier than it is now but, in the vast majority of cases, it still won't be easy.
And we won't get equality at all if we can't resist encouraging the normies to pity us.
Rant mode now disabled.
The Editor
17 Comments:
I couldn't agree more. Great post.
Unfortnately we have a great deal of work to do before some disabled people stop feeling sorry for themselves and take a perverse pleasure in it at that.
I'm not going to openly criticise disabled people who take this approach because they have right to live their lives as they wish. However, what happens to them as a result is their fault and nobody elses. I would cherish the chance to explain to them that the negative approach to impairment that they take is not helpful. We all get bad days and I'm not imune from have the odd 'feel sorry for my lot' moment either (my last blog entry is an example) but constant sympathy seeking will do nothing for the equality of disabled people, We will be forever tagged as poor little handicapped people.
What pisses me off though is that in order to obtain DLA, a piece of equipment or even to get a work medical referral you have to resort to the kind of behaviour that you have just so rightly criticised. If you don't whinge and say how much pain you are in how difficult it is to do the most simple of tasks then and how shit it is you will not get the benefits or equipment that is rightfully yours.
And that is something that is really intolerable because it perpetuates the myth of a helpless whinging crip.
Good point well made.
I feel that I must say that I whole-heartedly agree with everything you, and marmiteboy, have just said - equality is not about pity and sympathy and is all about giving everyone as much of an equal chance as possible.
Sadly though, people will always feel sorry for those whom they deem less-fortunate - or at least that is what I have understood from my, admittedly short, time on this earth. For example, when I was at school, I once attended one of their Christmas concerts, during which a disabled girl sang a solo - she was the only person to do so. However, owing to her inability to sing in tune, it was painfully obvious to all that she was picked solely because she was disabled and not because she could actually sing... Our school tried to pass this off as 'disability equality' which it sadly was not – it was just a case of ‘oh, look at what this person can do despite having a terrible disability’.
I do hope I have not offended anyone, by the way – I do tend to be both too honest and slightly controversial with my opinions, for better or for worse…
Marmiteboy - absolutely. Everyone, disabled or otherwise, has some days when it seems the world is out to get them. But most able-bodied people don't have to focus on their daily serving of Argh and write it all down and explain it in detail to person after person a couple of times a year or more, in order to get the money, equipment and assistance necessary to get by.
I recently got a job, and I swear my employers and co-workers have been infinitely more "get it" than the Jobcentre DEA, the local Council, Access to Work...
I'm a bit afraid to speak :oO
(-And yet you'll notice I got over it! Lol!)
First of all I 100% wholeheartedly agree with you about disabled people being treated EQUALLY and being provided with whatever can be provided to give them an equal playing ground, and that this is different from making excuses for someone who is inept just because they happen to be disabled. Couldn't agree with you more there.
The whining part though, gets a big tricky for me. I think you're right about it being damaging for people to wallow in self pity and to have others pitying them and that it does no good to help disabled people on the whole for people to think of them that way. But I'm not sure where the line is drawn between "whining" and "informing or educating." Certainly at both extremes it's clear! But in the middle part I think it gets trickier.
Some people could use a good smack upside the head and a reality check about how much more difficult things can be in certain situations. That's not to say that they should be made to feel sorry for anybody, but I do think it's acceptable to inform these people about life outside their little self centered bubbles. Unfortunately, with these types of people, even attempting to educate them often does no good so saying nothing at all may in fact be the best course of action to take in the end.
Also in the "is it whining" category, I think think that again, in that middle area (not at the extreme), what may sound like whining to one person, may for another person just be someone talking about their day, much in the same way someone who is not disabled would talk about their day.
People used to complain that my Grandmother was a bitter angry negative person. I thought so too initially. Until I realized that she was just answering them honestly. She had no desire to bring up anything unpleasant and would never volunteer the information, but if someone asked her how she was feeling, she wasn't going to sugar coat it. She was short and to the point and told people she felt lousy. And that was the end of the conversation from her point of view. Unless someone was foolish enough to say something like "oh come now, it can't be that bad" or "you must be exaggerating" or "people are starving in china, you should be more appreciative of what you have..." or what have you. Then they'd get an earful! If you don't want to know the truth, don't ask! ;) While it may not always be appropriate for people to volunteer information about how difficult some things may be, I don't think they should have to lie or hide that information if it comes up in a conversation.
So again, I'm not sure where the line is drawn with what some people may consider to be whining. Certainly at the extremes it's clear.
Marmiteboy
Judging by some of the comments I've read over at the Ouch! discussion boards, it seems that the whinging criticized here (however rightly so) is also basically a requisite for obtaining certain benefits allowances for people with impairments that stop them from working.
And in the US, if you're trying to get the courts to actually *enforce* the ADA (our equivalent of the DDA) you also have to whinge about all the cruddy details (except here we spell it "whine" and can't understand why the Brits insist on adding that "g" :-) ) in order to convince the courts that you're "disabled" enough to be protected. Or at least that's how things are right now (about which you can click on "ADA Court cases" under "categories" at the http://reunifygally.wordpress.com blog if you're curious).
But I agree, there's a time and context. Things like the famous "colored spoon" post are helpful for helping the rest of us understand a little better what it's like to have certain types of impairments and how we can accommodate them better; generalized complaining to people who are not close friends or relatives or fellow support-group members without a real purpose in mind other than venting or eliciting pity is generally unproductive and maybe even counter productive.
Andrea
We Can Do (Blogging disability, poverty, human rights)
Incredible post.
You have every right to be angry. The DDA, imperfect though it is, has been hard won by the sweat,toil and bloody hard work of countless disabled individuals. Yet all of that work, all of the issues it is designed to address can be rendered null and void by either the "pitying of" or "self pitying" attitude of a single individual. Extraordinary!
Might I suggest we take both the severely non-disabled fuckwit and the self pitying "handicapped" individual who thrives on the pity of the fuckwit and create a for profit organization where the severely non-disabled fuckwit is dependent on the efforts of self pitying "handicapped" individual for his livelihood? Perhaps then the fuckwit will grasp that pity is absolutely no excuse for tolerating a less than satisfactory performance from anyone?
Aleksi - spot on.
Loving your work.
Melissa,
You make (as ever) a very good point. And I am not suggesting for a moment that every disabled person who has a job ought never to mention their impairment.
I'm just pointing out that, if you do it in a way which evokes sympathy, rather than in a way which is objective and matter-of-fact, then you need to be aware of the consequences of your method of communication.
I've advised colleagues in the past that, if they are going to be in a meeting about failure to provide reasonable adjustment, or the amount of sick leave they've taken, or whatever, and they know that they aren't going to be able to remain calm and rational, then they should take in with them an advocate who will be able to maintain objectivity.
Because what those sorts of meetings are actually about is pointing out that you have been/are being discriminated against, and that that's illegal. It doesn't do much for your chances of demonstrating that point in a professional manner and negotiating a resolution if you're going to be a sobbing mess.
And, while it is helpful for your managers and colleagues to know what problems and barriers you face in the workplace, it is none of their bloody business how you wipe your bum, and you don't have a responsibility to educate them. Particularly if you can't educate them without revealing the sort of information that non-disabled colleagues would never dream of sharing with one another.
On the "just talking about your day" issue, some of the later comments on this post may be of interest.
I like your grandmother's approach. People who risk comments like, "Oh, it can't be that bad" deserve all they get.
The essence of what I was trying to say in this blog entry is that people will follow your lead. Talk rationally and calmly about the effects of your impairment, and your colleagues and managers will tend to approach it in the same way.
Wail, moan and rend your garments at the unfairness of it all and, when they've got over being irritated by you, they will pity you.
I'm going to blame Marmite now (not least because he's away this week) for having brought DLA into the conversation and muddied my original waters.
DLA (and other disability benefits) aren't about disability equality as it is enshrined in the DDA. They're about one's impairment. They're about filling the financial need which is created by the impact of your impairment.
Which makes them completely irrelevant to the argument in my original post.
In order to get DLA you have to list, in great detail, every aspect of your life in which you need external care. Which means you have to concentrate very hard on all the things you can't do. And not only the things you can't do today, but the things you can't do on your very worst day. Which is very depressing.
Now, given that the DLA form is about demonstrating that you need help, I'm not sure it's accurate to refer to the act of completing it as "whinging". It isn't the way you would normally behave, but it's an attitude you have no option but to adopt temporarily in order to get the assistance to which you're entitled.
The staff at the DWP don't have a disability equality remit. Their remit is to question whether your impairment affects you as badly as you have claimed. Which is why the whole process is so completely soul-destroying.
But you're not looking for pity: you're looking for belief. That, in my book, is not whinging. It's horrid, and no-one wants to do it, but it is nothing more than detailing the impact of your impairment. You're not complaining about its effects on you: you're just listing them.
Oh, by the way. In the UK, we spell "whine" in exactly the same way as you do in the States. "Whinge" is a different word.
Melbamae - what an excellent idea!
My Lady,
I read the post you referred me to (which by the way is an EXCELLENT post and discussion) and you do fully understand what I was saying here. We are in 100% complete agreement.
My concern was about what the definition of whining might be and "whining according to whom" but your comments in that post about when "normies" ask you about your weekend pretty much summed up what I meant. I also I agree with the points you've made in your reply to me here as well.
And Melbamae, I too think your idea is brilliant. When do we start? :)
*hands Lady Bracknell large box of Kettle Chips*
Oo, Kettle Chips: yum!
What flavour?
Very, very interesting post. I am completely in agreement. There are some (read: quite a lot of) disabled people who damage the cause of disability equality by not understanding, believing in it, or living it themselves. And I don't care if that sounds prejudiced, or similar. I live with an awful lot of pain, fatigue, migraines, subluxing joints, etc. I *never* mention this at work - unless it's got to the point where I have to ask my manager to go home. I feel it's unprofessional to mix my personal life - which includes my impairment - with my work life. That's different from demanding my rights under the DDA, which I try to do as often as possible - but I use language like "that's inaccessible for me" and other generalized comments that reflect disability rather than impairment. At least, I certainly TRY to do this.
Thank God I read this post in time! I was just about to start divulging details of my life in an effort to explain to my boss and co-workers why I have been so unreliable lately.
Thank you - great post.
Ladies,
So sorry for the delay in publishing your comments: for some reason, Blogger appears to have grown weary of emailing me to let me know when someone has commented.
Post a Comment
<< Home