Dangers of dependence

Simon Heng has found that being dependent on
other people brings with it its own form of vulnerability.

I became tetraplegic about six-and-a-half
years ago, and although I lost most voluntary movement below the
neck, I did retain some feeling in parts of my body. One of the
initial and most enduring memories of that time was an overwhelming
sense of vulnerability. Each time nurses or carers touched my body,
every involuntary movement or spasm, and every jolt or bump when I
was being moved around led to feelings of terror.

What did each physical sensation mean? Was my
hand or foot damaged? Had I been bruised? Were my fingers or toes
caught in the wheels of my wheelchair? Could I trust people to make
sure that I was safe? As the months went by, I learned that, on the
whole, I could trust people to look out for my safety. But every
now and then, I only narrowly avoided injury because of someone
else’s lack of attention. One person, who shall remain nameless,
still managed to rip off my toenail while taking off a sock!

Out of hospital and back in the community, I
had to learn a whole new way of life and new ways of relating to
other people, including the relationship of carer and cared-for. As
I learned to interpret my physical sensations, and deal with my
limitations, my feelings of physical vulnerability receded. But
that’s not the end of the story.

The whole point of rehabilitation is, quite
rightly, to promote independence, and I am eternally grateful to
those who helped me rehabilitate, both in hospital and in the
community, for showing me that this can have real value and
meaning. Evidently, for people with severe physical disabilities
(or any other kind of severe disability) this will always be a
qualified form of independence. So when we use the word
“independence” we really mean “self-directed”, as I will always be
physically dependent on other people.

This dependence brings with it a different
kind of vulnerability: however much I try to organise my life, I
have to depend on the reliability and good will of other people. If
transport doesn’t arrive on time, if carers fall ill or if people
don’t know my physical needs, or simply forget whatever
arrangements we have made, then at the very least my daily routine
grinds to a halt. At worst, my safety and health are at risk.

So I feel an acute awareness of the precarious
nature of my existence. I have got into the habit of checking and
then double-checking that people have understood any arrangements
we have made. I often ask people whether they have completed tasks
if they have been out of my sight. I am constantly making
contingency plans. I know that if I don’t do any of this, the
wheels will come off my wagon sooner or later.

So the next time your clients pester you with
constant questions about their care plan, or complain that someone
turned up five minutes late, or that a carer folded their socks the
wrong way, or that 20p is missing from their purse, remember this.
Maybe they are demanding. Maybe they are attention-seeking. But
this may also be frightened and feeling vulnerable. And maybe
there’s something you can do about it.

Simon Heng is a wheelchair
user.