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A Biggins By Experience

August 7, 2015

I followed a very interesting discussion yesterday about whether using the word “vulnerable” in the context of a disabled person, actually makes the person more vulnerable. I’m not sure where I stand on this. On the one hand, I do see a degree of vulnerability as inherent with a disability. But on the other hand, I believe a lot of our vulnerability is environment, people and situation based.

When I watch Steven going about his business in his own home, vulnerability is not the first word that pops into my head. At home, he has a self assurance and confidence that he carries most of the time. In his familiar environments, these same traits are also noticeable. But I’m also aware that danger to his self belief is never far away. Steven trusted the member of staff at the ATU who assaulted him. He was comfortable in his company until the worker turned that on its head. Steven wasn’t vulnerable at Virgin Active until a couple of women from the water aerobics group took a dislike to him and then it was a one way passage to him being shown the door. At the moment, Steven is very secure with his support package. His needs are met and he has a great relationship with the guys who work with him. But it’s a precipice. A change of social worker, a new manager wanting to make their mark, a change in policy, leaves Steven at grave risk of his life being turned upside down. Look at how at risk he was in 2010. What started with the ego & narcissism of one social worker, snowballed, until he came within days of having his life destroyed. Steven will always be vulnerable to that type of occurance in a way that a non learning disabled person would ever be.

Using a term like “The Vulnerable” is far more problematic because it dehumanises. The Government have played a blinder over the last five years of draining the nation of its empathy. Whether it’s about “Swarms of illegals” or “Skivers vs Strivers”, we seldom hear a human mentioned in public discourse. Everybody is othered until humanness & humanity has evaporated. It’s obvious why that has happened and it has been remarkably successful in achieving its goal.

In nearly all official documentation relating to Steven’s care there is no mention of the real relationship between us – father and son. I have become his ” live in carer”. It cuts all the emotional ties out of the relationship. It reduces the relationship. In other reports, I become an “expert by experience”. I can’t stand that expression. I don’t aspire to its suggestion and it is given to you by people taking up a higher position – the ” experts by profession”. What utterly divisive terms. They set up a them and us before you’re even out of the starting blocks. I don’t know any parent, family member, carer or friend who would ever describe themselves in that language. But it sure does work as a means of othering. It’s nonsense as well. There is only one expert by experience and that is the person themselves. Just ask Christopher Biggins who knows him better than he knows himself. The minute I become an expert by experience, the damage is done. I am no longer Mark or Dad. I have been stripped of me.

“Stakeholders” is another one. It applies only in social care. I don’t have stakeholders. I have family and friends. But to put the tin hat on the dehumanisation, a learning disabled person has stakeholders. It’s pretty meaningless and unequal too. The support agency has a “stake” in Steven’s life because without him, their profits would take a hammering. Steven’s Auntie Jayne & Uncle Wayne have quite a different stake. The end result is that a separation occurs. It’s hard to picture a human being when we’re talking about their stakeholders.

The NHS has lost the plot (or been phenomenally brilliant) at this. We now have Vanguards, Exnovator, Q Champions. Why can’t we just have Keith, or Amarjeet doing their jobs. As well as othering and dehumanizing, it perpetuates a lie. The lie being that something important is happening, being carried out by someone very important. I’ve been trying to change Steven’s bank accounts, as instructed by the OPG. Three visits to the bank, five phone calls and two emails and I’m no further forward. Yesterday, I received an email from the “Customer Experience Manager” (No name). I’m having an experience with them and its crap. But I guess I’m meant to feel better and valued because I have the attention of the Customer Experience Manager. All I really want is for someone to do their sodding job.

Where do I see someone with a learning disability as most vulnerable? When they are seen as less than human. When they are turned into a non human. They don’t do that – it is done to them.

Most Court of Protection judgements talk about “P”. And ” B”. And “A local authority”. Terrible things may have happened to that person but its impossible to connect on a human level to a ” P”. In that respect we were lucky and Steven & Mark Neary are human beings. I think that is why I continue to write about, not only the struggles we have on Planet Social Care, but the good and quirky stuff as well. It keeps the humans in the story despite the powerful gravitational pull to present us as objects. I’m stubborn enough to persistently resist that happening.

When Steven becomes an “S”, I’ll know the game is over.


From → Social Care

  1. Great article Mark although I am guilty of using all of the above at one time or another. I particularly like the section on this government which sums up what they have done quite brilliantly:

    ” The Government have played a blinder over the last five years of draining the nation of its empathy. Whether it’s about “Swarms of illegals” or “Skivers vs Strivers”, we seldom hear a human mentioned in public discourse. Everybody is othered until humanness & humanity has evaporated. It’s obvious why that has happened and it has been remarkably successful in achieving its goal “

  2. weary mother permalink

    The ‘client’ word, some academics of repute say, was self adopted by semi professions to increase their own status.

    In my work experience the introduction of the ‘customer’ word into these groups, always prompted defensive clustering. Just getting a conversation going was impossible at times. Far less around having a grown up debate around what customers can expect over what a client or a patient could; basics like differences/similarities in providing a service? Whose needs were to be met, turning up on time, and the biggies like accountability, respect and mutual value – all offended and caused visible pain and chaos.

    People who travel on trains were called passengers, human freight?, (not sure the new terms have changed that much?) In the paid for by us Public service, the public servants call us client and patient ; a passive collective that should always be grateful and as importantly….nice ?

    Us and ours are allocated title – ‘vulnerable’, a passive faceless undemanding – collective waiting gratefully to be ‘done’ to…..?

    Supermarkets etc would go bust in days…..

  3. Jayne knight permalink

    Enjoyed reading this
    Wholehearted agreement
    And it explains z question I had about the COP proceedings very well

  4. Who among us is INvulnerable, though?

    It isn’t the words we use, but the assumptions and skewed meanings behind them. If “vulnerable” is used as a synonym for “pathetic, ,needy, victimised”, then sure, reject it. But if the circumstances of your life can be upended by people with the power to make arbitrary decisions based on suspect theories – or shortage of funds – then that fits MY definition of .vulnerable. It is the abuses of power, whether caused deliberately or out of stupid bureaucracy that needs to be examined, not simply rejecting the negative connotations of words.

  5. Sally permalink

    Agree. The word Stakeholder in this context makes me feel ill. It is without meaning. An actual stakeholder has power. A customer has power- unless they are not able to take their business elsewhere so you will not lose out if you provide poor goods or service.
    “Vulnerable” is now thrown around so much that it has no meaning. You would expect, using this term anywhere else to have to supply more information to explain the term.Vulnerable to what? From what?
    At best it should be an attempt to remind others that the person is at risk of various things, more than would be the non disabled. Such as getting assaulted, lost, run over or conned if left alone in the street, or ,at home ,at risk of a lot of accidents non disabled would avoid. It was used to try to ward off some service assuming that the person didn’t need assistance in those settings and them being left without help.
    I keep being enraged that pretend empathy (“We want to learn what your Experience was”) is used as a substitute for doing the job! (Gee ,that person is Listening and really Understands. I am perfectly satisfied now.”)

  6. I so much agree – all these terms have become separators. We used to have social workers and secretaries to the team – we all knew where we were. It seems to me that all these other terms are supposed to keep people away. Contact centres, Customer service officers….and websites where we should send in our request. That’s if we can find out a contact – one N/West Authority has apparently improved their website. You now get a spoken message on Adult social care about what they can do – sounds good but if you listen it’s all general and nothing clear, and nowhere is there a contact number or even email. I had to use their search engine to find one! Noone is supposed to have a social worker or their number either – nor a name as it appears noone holds any “cases” any more. We used to have people at the end of their phones answering and being public servants.- and it seems to me able to distinguish needs from an informed position. Whether it really saves money I’d question but I guess what ti saves is people being able to get through… and probably means more crises…

    • Sally permalink

      Yes. Lots of our children’s services, including disabled children, have just been shifted on to the groovily named”Single point of access” service. No need to hunt for phone numbers and services, the SPA will cover everything, advise on everything.
      I was recently told by CAMS to direct a query about help for my distressed and disabled son to the SPA. What I got through calling SPA was the most bored youthful voice imaginable of unstated qualifications, telling me to “fill out lthe on line form and a manager will be in touch.” I asked if a paper copy was possible. After all ,some people especially those with learning disabilities, the elderly, the poor, may not have access to the Internet. “Oh…we ask them to access a computer somewhere ” What arrived in response was an impersonal email suggesting a couple of voluntary organisations I had just written were not open to us. The SPA does not actually take on cases as such.

  7. Reblogged this on rosemarytrustam and commented:
    The sad truth about people’s vulnerability to our public servants…. and the separation of them from people

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