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

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.

source: Scientific American

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

Related articles:

• The Tangled Web of the ‘Biopsychosocial Model’ of Disability (lostheskald.wordpress.com)
• Ask UNUM FAQ: Atos, WCA, CardiffU and Biopsychosocial Model (thecreativecrip.com)
• MUST READ: New Labour, the market state, and the end of welfare #Atos (thecreativecrip.com)
• Book Review: Bright-Sided: How Positive Thinking Has Undermined America by Barbara Ehrenreich (disabledfeminists.com)
• The Negative Side of Positive Thinking (disabledfeminists.com)
• Cancerland (barbaraehrenreich.com
• Kool-Aid Psychology: Realism versus Optimism – How optimism trumped realism in the positive-psychology movement (scientificamerican.com)
• Debunking the Law of Attraction and “Thoughts Create Reality” Religion (debunkingskeptics.com)
• Optimism & Pessimism (intelligentwomenonly.globspot.co.uk)
• 5 Big Problems with Positive Thinking (And Why You Should Do It Anyway) (psychologyofwellbeing.com)
• Yes, I Suck: Self-Help Through Negative Thinking (truenorthpartnering.com)
• Mentally ill? Don’t worry, work is what you need – apparently…  (ronsrants.wordpress.com)
• TOPIC: My Battle with WP (unemployment movement.com)