No place for disablism in disability campaigning

“There’s a great irony in telling someone to feel positive
whilst ensuring that they feel negative.”

Nell  Bridges, 2012

Life online brings out the best and worst in people and often when you least expect it, with Social Media copping more than its fair share. Every day is a  struggle being in pain or feeling sick on the inside while you look fine on the outside. It’s hard enough to explain to someone who really has no clue just how debilitating chronic pain and invisible illnesses are. It’s even worse when the person that needs convincing is another person with disabilities, a Carer or self-proclaimed disability advocate passing judgement on that which they have very little knowledge of, if any at all. 

This past weekend I had the misfortune of seeing a disability campaigner’s complex health concerns being used against them – by another disability campaigner. All he was doing was trying to make sense particular symptoms related to his disabilities that remain unresolved, the symptoms of which have had a devastating impact on his life. Tweets like this are a common occurrence from those of us who don’t have the support and cooperation of the few medical professionals we are allowed to access via the NHS. I’ve made a number of them myself and will continue to do so. Some followers can be very helpful in suggesting specific testing and specialist consultants who are better informed about certain medical conditions. Those people I will happily engage with. Others seem to work overtime repeatedly trying to blame me for the support I haven’t got – and the culprits are almost always the same. Those people I don’t have time for and tell them so when they cross the line. I’m an equal opportunity offender. I follow people with different views and some whom I don’t particularly “like” for the sake of balance. I’ll discuss, banter and debate and everyone is given more than enough rope to hang themselves when they refuse to agree to disagree. They are welcome to their beliefs and they do have a choice: they don’t have to follow me, allow me to follow them or engage. The same goes for disablist campaigners.

The latest bully took exception to this person daring to share his experience and feelings of frustration. He was berated – yes berated – for “not living the life” that this person said he should lead and deliberately choosing disability “as their only career option”! As if she really has an informed finger on the pulse of this man’s life 24/7!  The bully carried on for quite some time and no matter what she was told, the answers weren’t good enough. This man, a self-employed computer techie and doing an MA in educational research (to supplement the CompSci MSc), was defending himself against someone who, if they are the disability campaigner they portray themselves to be down to the Spartacus Twibbon, shouldn’t have put him through a grilling that would qualify them to work for the likes of Messrs Smith, Grayling and Lord Freud.

Work will make us free!!

*headdesk*

He said to her and I quote: “I can’t say I’ll stop doing something I’m not doing, after all.” That, after reeling off his qualifications to prove he wasn’t wasting his life as she insisted he was doing simply because he tweets comments on being undiagnosed.

This is not the first time such bullying has played itself out so publicly on the internet, and Twitter to be specific. It most certainly will not be the last. Kudos to the victim (he was victimised in my opinion). After the inevitable backlash and tirade against the way he was treated, the man himself opined that the maliciousness towards her on the part of some wasn’t acceptable. He feels that she was “only trying to help” and that there was no maliciousness intended. I disagree about the lack of malice. Attacking people under the guise of “just trying to help” is getting old – fast. There was a concerted effort on her part – which is what those like her always do. They try to back you into a corner and wear you down until you conform, so that they feel better. The following screenshots say it all.

Disablist Disability Campaigner

Disablist Disability Campaigner

This is about her...

So - disabled / ill people are wrong to want answers

Not disablst, says the Disablist

The only opinion the Disablist cares about is her own

This isn't Disablist, is it?

Take your "help" and ideas of "normal" and....

Nothing more dangerous than a self-righteous Know-It-All!

The bully is an apparent adherent of the “Think Positive” Movement that has saddled People With Disabilities (PWDs) with the likes of Neuro-linguistic Programming (NLP) , Cognitive Behavioural Therapy (CBT) and the BioPsychoSocial Model (BPS).
In the world of positive thinking other people are not there to be nurtured or to provide unwelcome reality checks. They are only to nourish, praise and affirm. Harsh as this dictum sounds, many ordinary people adopt it as their creed, displaying wall plaques or bumper stickers showing the word “Whining” with a cancel sign through it. There seems to be a massive empathy deficit, which people respond to by withdrawing their own. No one has the time or patience for anyone else’s problems…When the gurus advise dropping “negative” people, they are also issuing a warning: smile and be agreeable, go with the flow–or prepare to be ostracized. 
source: Bright-Sided: How Positive Thinking Has Undermined America by Barbara Ehrenreich (56-57)  quoted by disabledfeminists.com
The Biopsychosocial Model of Disability has been a convenient weapon for each of the main three #UKpoli parties and the corporate sector with backing from profiteering insurance company UNUM & DWP partner Atos Healthcare. It has also proven very useful even for disability campaigners to use against other disabled people, whether knowingly or not.  BPS is another way of saying “it’s all in your head” aka not real aka psychosomatic and, for some, possibly Munchhausen Syndrome. Even more disturbing is how many psychiatric and disability organisations totally buy into this and will not brook with any opposition against it. When disabled people like the bully take other disabled people to task for being “hypochondriacs” or “negative” or “uninspired” that is the BPS Model in action. Is it no wonder that so many of us are not getting the help and support we need from health and social care and that CBT and now NLP are seen as the cure-alls for PWDs and social ills?

I’ve heard that Unum use the biopsychosocial model. What does this mean and how do Unum use it?

In 1977, psychiatrist George L Engel first introduced the biopsychosocial model, or BPS. This theory was first used practically by psychologist Erik Erikson.

The idea is that the impact of an illness on a person isn’t just a result of the purely medical elements. Physical (e.g. disease, joint damage), psychological (e.g. disposition, anxiety) and social factors (e.g. work demands, family support) also play an important role. In simple terms, this means that physical, mental and social factors can all influence the ways in which people respond differently to the same disease. This can mean that two people can have the same medical symptoms, but one recovers and one doesn’t – because of their different circumstances and mindsets.

This is clearly relevant for Unum, where on the one hand we do medical underwriting as part of the insurance application process, and on the other we provide an extensive, market-leading rehabilitation service to help people get back to normality.

In medical underwriting it’s important to help predict which people are likely to become long term sick. It also shapes our approach to rehabilitation for a particular person – identifying the barriers which may prevent them from making a successful return to work following an illness, and helping them overcome those barriers.

Incorporating BPS principles was first trialled by Unum in 2006 in medical underwriting, after three years of close analysis of our claims experience. The insurance application form that includes BPS is a little longer than it used to be, and concentrates on attitudes and behaviours that give us information about how likely illness or injury would be to cause long-term sickness for someone. On the other hand, this means that much less medical evidence is needed these days to support the application. Customers can then, in most cases, get their cover in place in a few days rather than having to wait several weeks for reports to come in.  If customers prefer, we will collect the information needed from the applicant by telephone or even, where appropriate, in their workplace.

By asking more extensive questions on the application, such as sickness records and attitudes to healthy living, we can assess the risk in the round, taking account of both medical and all other surrounding factors. We are then often able to insure those that other insurers see as ‘uninsurable’. In addition, we’re able to consider providing cover for people who may have had potentially serious illnesses such as cancer, back pain or have had a heart attack before they applied for insurance.

source: UNUM
The great poet Kahlil Gibran once said, “If I accept the sunshine and warmth, I must also accept the thunder and the lightning.”  Whether they realise it or not, those who insist that disabled people must adhere to a “think positive” manta are pandering to disablism, especially towards those with mental illness.  The danger in this is that we are meant to not complain or draw attention to our problems or perceived imperfections in the systems which we expect to rely on for diagnoses and effective treatment. Mental and other “invisible” illnesses are as much a “choice” as physical disabilities are. The standards of BPS and “think positive” adherents results in pointless  mean-spirited victim-blaming. These people always end up knocking other people down (often to lift themselves up).

This type of philosophy places an untoward emphasis on the individual: You control your reality. You control what happens to you. You control how much money you make. You deserve the best. Solving problems or helping others is beneath you, because it is all about you. You’ve got the world on a string, (sittin’ on a rainbow!) and it’s yours for the taking. Why help others, when you can just attract everything you want with your thoughts?

Telling someone to just “think positive” will not help her or him. I know that’s a rather harsh statement to make. I have had people “helpfully suggest” positive thinking (numerous times, I might add) in order to help with my illness. It is supremely frustrating, and it also makes me want to ignore whomever has offered that particular fool’s gold nugget o’wisdom. I get that people are scared of illness, disability, and death, and I understand why they are scared. But shaming people–particularly those with disabilities, chronic pain, mental health issues, and other chronic conditions–into silence by “helpfully” suggesting that they “think more positively”–and thereby shutting down the conversation or any room for the PWD to defend hirself–is not a solution. Rather, it just reinforces the it’s all about me claptrap that so much of the self-help industry traffics in; such “helpful suggestions,” oftentimes, are really meant to make the person who offers them feel better about hirself, and are not offered out of concern for the PWD or whomever else is unlucky enough to have been outed as a non-Positive Thinker. After all, when someone offers those types of “helpful” suggestions to a non-Positive thinker–particularly PWDs or other people who have been marginalized by various cultural institutions–what she or he is saying starts to sound like, “I don’t take your experiences seriously. I care about expressing my opinions about your life and how you live it, so I can feel like I’m doing something and thus feel better about myself.”

So, in effect, it really becomes all about them once again. And, in their minds, it is all about them, because the latest self-help craze told them so!

Source: disabledfeminists.com

Isn’t positive thinking better than negative thinking? All other things being equal, sure, but the alternative to being either an optimist or a pessimist is to be a realist. “Human intellectual progress, such as it has been, results from our long struggle to see things ‘as they are,’ or in the most universally comprehensible way, and not as projections of our own emotions,” Ehrenreich concludes. “What we call the Enlightenment and hold on to only tenuously, by our fingernails, is the slow-dawning understanding that the world is unfolding according to its own inner algorithms of cause and effect, probability and chance, without any regard for human feelings.”Feelings matter, of course, but the first principle of skepticism is not to fool ourselves, and feelings—both positive and negative—too often trump reason. In the end, reality must take precedence over fantasy, regardless of how it makes us feel.

The victimiser has gone full circle with the unnecessary situation she created and is now painting herself as the victim in all this. She ran crying to her dying mother (screenshots saved) and prominent campaigners. Her critics have made her sick and upset her dying mother who doesn’t even have a Twitter account because it’s full of crazy people! She’s right and everyone else with genuine criticism of her motives and actions are wrong. We misunderstand her “good” intentions. Of course she retweeted everyone who agrees with her that we are wrong and oversensitive… and just that.

Victimiser playing the victim...

She's sick from the mess that "she" started? Seriously?

The disablist is always right....

Sometimes you just want to tell people to take their “concern” and shove it. Some of us did just that. I, for one, am not going stand down on anything I’ve tweeted. I thought she was a willfully obstinate bitch then and I still do. People like her have made my life hell – and still do. Disablists should not be given a free pass and it shouldn’t have taken the better part of two days to try to get a Spartacus Twibbon-wearing flag-bearer to see a bit of light.

Disability activism includes respecting the views and needs of others with impairments outside your direct experience. This is required, not optional.

“The most dangerous people in the world are those who believe that they know what is best for others. People who believe that they know what is best for other people are denying other people’s truths. Whenever our own truth is denied, ignored or invalidated we experience the greatest fear we can ever know: the threat of annihilation of our self” (Dorothy Rowe, 1989:16-17)

source: Nell Bridges in comments

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37 thoughts on “No place for disablism in disability campaigning

  1. Pingback: Want Life despite the freakishly terrible. It’s really That Good. « A Friend to Yourself

  2. I do feel the same, it has happened many times to me with my disability and I’m sure it’s happened to many of you. It took be a long time to realise people offer advice because they want to help you. Even when it’s wrong or hopelessly misguided, they offer it because they don’t like seeing you suffer.

    • Her comments here about him, me and anyone else who doesn’t see things her way completely blow that “love” nonsense out of the water! According to her, he’s a “whiny little shit” – and he’s not the only person she’s had a go at on Twitter in the same manner either. There is absolutely NO defending this whatsoever!

  3. if you carry on with this I shall call the police. Or your local mental health team. You’ve totally misrepresented what I said and that whiny little shit IS the only person I have issue in so don’t add lying to your already unpleasant personality. Don’t be positive don’t try and enjoy life. It’s your bloody loss you vindictive liar

    • You are going to call the police & my local CMHT after going ape on *my* blog?! Good luck with that sweetheart and have a nice day!

  4. Also coming into this late.
    I’m not really in the mood for an argument but I can’t let this pass without saying something.

    A. Excellent post.

    B. I *HAVE* read the tweets related to this.

    There is a “bully” here and that’s the person who decided to call someone on their disabilities. She (and some others) appear to me to be making light of someone’s disabilities and criticising them in such a way as to make out they choose to be sick and it could all be fixed by a bit of positive thinking. And that this person is wasting their life being disabled when in fact the person has a string of achievements under his belt that the majority of people in the UK don’t manage.

    Whatever place these tweets came from, however they were meant, they are not helpful in the slightest, more condescending and delivered with an almost religious zeal.
    Had I been on the receiving end of that tirade of “help” I don’t think I’d have handled it quite so politely. The reaction from others who saw this as bullying is only natural and has sparked a much needed debate on disablists in the disabled community – because it IS bullying behaviour.

    A few “aches and pains” eh? Smacks of “I’m more disabled than you”. If I wanted to be cheeky I’d suggest she go work for ATOS conducting Work Capability Assessments as she seems to have the same understanding of sickness and disability that they do.

    What she (and those being defensive of her) must realise is that some of us are isolated (in any number of ways) and that Twitter is one of the tools we use in order to support ourselves. This enables some of us to cope in this difficult time where we’re fighting for our lives, being persecuted as liars, cheats and malingerers from every angle. To get this persecution from inside the circle of support could be potentially damaging to those already on the edge. To push someone this way whether you know their condition(s) or not is downright irresponsible. I see no empathy here.

    I’m reading that this superior disabled person is having a hard time with her own disabilities and her dying mother. I’m in exactly the same boat. This begs the question, why are the health conditions of a stranger on Twitter more important than those that need to be dealt with at home?

    Whilst I empathise her situation. She needs to look back over her tweets and conversations, perhaps then she’ll see how evangelical and critical she comes across and stop accusing others of being “nasty” or “twisted”. There’s no witch hunt here. Only a bunch of pi$$ed off disabled people who live in the real world stating their case in response to her words.

    Anyway. Before anyone else comments, go have a read at the tweets as well as the comments on here, they offer a fuller picture.

  5. Your reaction to this shows what sort of person you are, twisting other people’s words for your own ends. You’re twisted and bitter and it will come back to haunt you. I don’t have a good life contrary to your wrong assumptions and ok if you want a life full of misery go ahead. Carry on. Your remarks play into the hands of Grayling and the enemy. Of course work can’t cure mental distress the man’s an ignorant idiot but there could be good supported sheltered work with just rates of pay. Or don’t you want that either? You’ve got a long road of suffering ahead if you don’t work to change.

  6. I too entered this late, and don’t wish to get involved with the ‘tweets’ aspect, but definitely on the idea that there is any kind of hierarchy in disability, and hope this example of ‘in house disagreement’ highlights how quickly tides can turn and how hurt people can become, Social Media we all know is powerful tool, let it not become a weapon.

    It’s tough enough facing prejudice from the public without finding as you fight the disability war, others have decided their disability is more ‘worthy’ than theirs.

    It’s weird to desire to be considered worse off than someone else – and horrible to imply it. Today I heard of the death, by suicide, of a man in his 30?s who has left behind 3 young children. Depression is cruelly disabling.

    • Amen Dawn and thank you very much indeed. The “aggressive manner” I have that some complain about is the very thing that is keeping me alive – and this is only a couple of years post-diagnosis (having shown symptoms since I was about 12 years old; I’m 46 now). I wouldn’t wish Depression or any other form of Mental Illness on my worst enemy. I only wish I could control this – or get rid of it altogether.

  7. To the person spamming my blog: Me publishing your comments will only bring you more grief you won’t take responsibility for. Back off. Now!

  8. Sorry – I am coming to this debate late and am not sure I am following all the arguments. My take is that there is always a tension between identifying as an invalid and being bullied in to being and acting ‘normal’. It is different for every one and different for any individual on different days. In the end it is not the role of outsiders to decide this for you.
    Basically this is the rationale for dividing people in to two groups in ESA. Those who can stay ill and those who must act ‘normal’. It doesn’t work. On a good day most people identify one way and on a bad day the other way. This division in to two groups is wrong. Most people with disability have to negotiate between the two positions all the time and they should be left free to do it themselves not forced one way or the other by a tick box test.
    And don’t forget to sign Pat’s Petition to get this all paused and reviewed. And share, share, share.
    http://epetitions.direct.gov.uk/petitions/20968

  9. and I worked in social services with learning disabled people and had to campaign hard for them to be treated equally which was resisted by the higher ups. I got literacy and numeracy classes going and socialised in my lunch break all against current policy. I felt deeply that they were entitled to be treated ‘normally’ and not as ‘patients’ and we had a lot of fun and continued friendship. It took guts. But face it non disabled people don’t want us to complain. We have to be people first and then we get acknowledgement and people are willing to help us.of course you can’t think yourself fit but you should enjoy the good bits or life is dire. And someone actually shocked me out of faulty behaviour patterns, a psychiatric nurse who asked if I wanted spend all my life in hospital. I got better, not without medication and counselling. A hard slog with setbacks but I did. Now I only have my physical problems..

  10. in case you wanted to know I too have mental health issues in fact I’ve been sectioned for psychotic depression and self harm but I don’t go on and on. You and your little band of self centred bullies are to be pitied. You’re a very nasty twisted person

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