This is a difficult topic to write on but I think it’s time
I took a stab at it.
This is more personal than many of my posts, but it’s
important.
What or who do you think about when you hear the phrase
“vulnerable adult”? An elderly person, frail and memory failing? Somebody with
severe learning disabilities, or a developmental disorder that leaves them
cognitively impaired? Well yes, those assessments aren’t wrong. But that’s not
the whole picture either. Because, it turns out, you can be a 32 yr old with a
high level of education, who has been able to hold down a good full time job
and you can be or can become a vulnerable adult.
Over the past couple of months we have been moving house and
carrying out some minor renovation on the new house. This has meant that for
the most part I have been sat in the house by myself letting in and dealing
with a succession of builders and contractors, energy salesmen and council
representatives. Plastering, roof, flooring, internet, energy, water ... The
list is endless.
Moving house is of course exhausting for anybody. It’s a big
job and it’s stressful. When, like me, you have a chronic illness it becomes a
ridiculous feat. I have been in a state of exhaustion or weeks, struggling to
stay awake, in screaming agony on some days, vertiginous and migrainous, woozy
and with a brain fog which deserves its own slot in the shipping forecast. It’s
a slog to get anything done as every little bit of exertion needs to be quickly
balanced out with rest. Needless to say, this isn’t the best state to be
dealing with strange people and negotiating business.
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| Crashed out on the sofa with fatigue and pain |
It took me a couple of weeks of rising anxiety to realise
that it was because, for all intents and purposes even if it was not an
official diagnosis, I was in the position of a vulnerable adult. My anxiety was
the fear that I was in a position of powerlessness, that I could be taken
advantage of (financially if nothing else) and wouldn’t have the wits or
wherewithal to do anything about it. I have had to open my door to strangers,
invite them in to my house and hand over money and trust that I will be safe
and that they will be honest and kind. That’s a tremendous ask. We would like
to think we live in a world where this trust is inevitable but instead we live
in a world in which we know that scams happen. We know that people are ripped
off. We know that some contractors can swindle and cheat. We know that inviting
a strange man in to your home is a risk. These are calculated risks that any
adult takes.
But as an adult who is struggling with cognition, who is
struggling to have an alert and bright mind, an adult who is fighting to speak
through a migraine and a head like cotton wool, an adult who has used up a huge
amount of their energy just to answer the door to you, it’s a very different
calculation. The risks are higher.
I have come away from several interactions now not being
entirely sure what was said, if the pay was accurate or was the work really
completed as requested. Because I didn’t know, I couldn’t remember, I couldn’t
make clear judgement. I just had to plod along and follow the script, say “yes
thank you” fumble for the money and hand it over and trust that all was well. It’s
a risk.
I may not look like a vulnerable adult on the outside. There
is no tell-tale ramp and hand rail on the house, I don’t have a “classic” look
to my face but it doesn’t mean that I am not in a vulnerable position.
At the same time that this has been going on I have been
considering the worth of buying a wheelchair or a scooter. Friends I have in a
similar position health wise are opting for motorised wheelchairs. Aside from
the usual stress and mental gymnastics involved in considering if I am disabled
“enough” for a scooter or chair or if I am faking or being dramatic, there are
concerns about vulnerability. Even though I almost always use a walking stick
these days there is a definite step up in how visible disabled you are when you
start using a chair or scooter. The internationally regarded symbol for
disability is a person in a wheelchair. Our society still regards people in a
wheelchair and disabled people as more vulnerable, regardless of their actual
capability. And if you are seen as more vulnerable you are often treated as
such, both good and bad (and really the good isn’t all that good).
For some reason, I am struggling most with the concept of
using an electric chair. I have friends who use them and I don’t consider them
to be more vulnerable or to be weaker. Yet when I try and picture myself using
one I experience a sense of rising panic. The thought of me in a motorised
chair just doesn’t fit. I imagine it and instantly see an increased
vulnerability and an increased lack of agency that is more than I can cope
with. In part it is a perceived passivity: you sit in the chair and the chair
moves. In reality it is no more passive than a scooter: you are in control of
the speed and movement, you are a not the passenger but are actively in
control. But I can’t shake this feeling than in a chair I will be vulnerable.
What can be done about this then? Is there a solution to the
issue of vulnerability. Clearly there is some need for us to assign he label of
vulnerable adult to some people. There are those who need extra protection and
help that can’t be denied. But we also need to consider that vulnerability is
not an absolute state. It can develop in a person or can vary day by day.
Vulnerability is also something that very much varies by perception. In some
cases it is self perception: I would feel more vulnerable in a motorised
wheelchair than in a scooter; I feel vulnerable when I am fatigued and dealing
with contractors. When this is so then the individual can work on altering
their own perceptions, breaking down the exact why and what of that
vulnerability with the ultimate goal of feeling less vulnerable.
The issue is
of course that that doesn’t change other people’s perceptions nor does it
change and physical attributes. I may train myself to feel less vulnerable but
I will still have that fatigue and difficulty concentrating that puts me in a
vulnerable position. Additionally other people’s perceptions, whether formed of
good intentions or with the intention to harm are difficult if not impossible
to change. When you appear as visibly disabled, there is a likelihood that
various people will automatically perceive you as vulnerable regardless of any
other evidence to the contrary. This of course can inform their actions and how
they treat you, in some cases increasing the risk or vulnerability in the
process.
Still though, the issue of actually having traits and
difficulties which render me vulnerable exist. Is the problem then simply that
I am vulnerable I am correctly perceived as vulnerable by our culture and
simply can not and do not want to admit to this level of vulnerability. I do
not want to be a vulnerable adult. I do not want to be somebody in need of
cosseting, care, talking down to and gentle explanation. And yet, I do not want
to be hurt, swindled, taken advantage of or otherwise mistreated as a result of
my difficulties. I do need help. I do need reassurance. I do at times need
people to talk me through complex decisions, forms and calculation. I do need
to sit down and rest and I do need help with mobility.
It comes down to trying to express to people that
vulnerability leads to a need for help but that help does not need to come at
the cost of a person’s dignity.
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| I hired a scooter for Nine Worlds. Using it on public transport was an experience. |
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