Experts by personal experience aren’t always right (guest post)
Professor June Andrews discusses her discomfort about advocacy based upon the questionable (but unquestioned) personal experience of individuals.
Dementia is in the news.
Stories about it could be described as fashionable. Advocacy organisations understand the power
of hearing the voice of a person who is experiencing dementia themselves, and
so they are on the hunt for people, preferably famous, who can come to
represent the disease. They can be
people with dementia, or the relatives of people with dementia. At a push, they can be people who sympathise
with dementia, if they are famous enough to be influential even though they
don’t have a back story.
Advocates have an honourable role in the campaign of any
charity to raise funds. It’s often
described as raising awareness. But in
truth, awareness is already pretty high so you can be sure the main aim is to
get funding for the charity, which is often focussed on a cure.
There are two problems with this sort of representative
Problem 1 – the unquestionable legitimacy of “personal
The press officer at the charity is not a clinician, so when
someone turns up with a diagnosis, they take it on face value. The way news is
curated by media editors and controllers demands tropes like “victim” or “hero”
and some virtue signalling or novelty. If
the person with the diagnosis is articulate and personable, they will be good
to undertake media roles for the charity. The public gets most of their
information from general media, so that’s the way to let them know they need to
fund a particular charity and secure a cure.
Media coverage is so relentless and fast, the representative needs to be
nimble and well prepared to get the best from any opportunity that arises.
Dementia is a progressive degenerative condition, but the
press officer can’t stop to ask any questions when the person is still stable,
at the same level, years later. By that
time the dementia representative patient is busy and in demand for appearances world-wide. So pervasive is the idea of “nothing about me
without me” that conference organisers know they will be heavily criticised if
they fail to put a person with dementia up on the platform. The media-experienced-dementia-experienced
personalities get heavily worked. They
see it as a duty and a mission, whatever it costs them.
I have recently been alerted to the fact that any question
of whether they actually have what a clinician would think of as dementia is blocked. Dementia clinical experts are puzzled,
because mild dementia is a transitional phase but these mildly affected media
representatives go on for years. If
someone has been on the circuit for a long time, clinicians can with confidence
say that this person is definitely not like any other dementia case. The charity can’t afford to go anywhere near
this. However odd it might seem to people who really know about dementia, the
representative (who almost certainly has some other complex illness) is put up
in public as just “a person with dementia”. News values demand an interesting
person with dementia who is happy to be exposed in the media. If you have one, you keep them as long as
possible and are, to be honest, grateful
if they seem to survive longer than usual because it’s hard work to keep
finding people with a fatal, progressive, cognitive disease and a thirst for
publicity. You invest in what you’ve got.
Any suggestion that the patient’s sense of entitlement is
out of control is taboo. When organising dementia events, you may sympathise
with requests for free places for people with dementia. When they then expected travel and hotel
accommodation for themselves and their partners, with a few days on either side
to overcome their fatigue, organisers can’t always afford it. My own
experience is that refusal causes profound offence, and can give rise to well
publicised anger and unfavourable comparisons with other conference organisers.
We’d get accused of profiteering on the backs of people with dementia and
failing to give voice to people with dementia.
Actually our job was not to give them voice. It was to educate professionals about the
latest research, and practical things like how to manage continence, and terminal
care. The person with dementia talking at the event
was usually preaching to the converted. We had more educative value from
dramatic representations of the sort of complex problems that could never be
revealed in the first person account of one individual.
Problem 2 – erosion of the legitimacy of professional
The second problem is related. In the environment that has
been developed with the strong encouragement of the advocacy organisations, any
one of these “dementia-experienced” selected representatives trumps the
knowledge or experience of the rest of the world. The individual is sanctified with an almost
religious fervour, in that anything they say cannot be contradicted. Crossing
them gives rise to shock and outrage. Those
who might be seen to hold heretical positions such as questioning the diagnosis
or wanting to meet without a token dementia person in the room often do so
secretly because to speak openly about this sort of thing can affect your
funding or your job prospects. You risk
a sort of excommunication. Or you hide.
When you’ve upset the
dementia lobby, they mobilise an articulate person with dementia who goes along
with their mainstream view to attack you. From experience, it is personal and vicious. If I was earlier in my career, I believe I’d
be silenced by them. The decider is that
I don’t have dementia and they do, so anything I say that they disagree with is
evidence that I have no knowledge. In this way, people who have worked with
hundreds of affected families and people are marginalised. One individual can
say on the basis of their personal experience, with the backing of an
organisation, that this is only a “so-called” expert. Social media heats up. It’s dangerous to come out with an alternate
point of view because you’ll get attacked.
I understand fear and rage, and as a psychiatric nurse, I’ve
worked with lots of that. What offends
me is the channelling of that by organisations and lobbies for their own ends,
using people with dementia, patients, dementia sufferers – whatever you are
allowed to call them – as a human shield. They like to imagine they have the
moral high ground, but they don’t. For
them, it’s just business and the sooner we reveal that, the sooner other sorts
of experts will be able to say what they know without needless anxiety.