A Biggins By Experience
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