The Simon Heng column

March 17, 2005 in Adults, Disability

One of the unavoidable aspects of any form of moderate or severe
disability, which separates those who need care or any form of
special consideration from the rest of society, is the lack of
control over how much of one’s life is private.

From case conferences to person-centred planning, from medical
consultations to housing applications, and from benefit claims to
job applications, all disabled people have to explain themselves,
their conditions and their needs, to justify their claims to
special consideration. We even have to expose our desires and
ambitions to virtual strangers. Most of us do it without thinking
how unusual it is in this society to reveal intimate details, our
financial position (often precarious), even details of our sex and
love lives, seemingly to anyone who asks. The idea of
confidentiality might restrict the circle of people we need to
expose ourselves to, but it’s not the same as privacy.

Of course, to access the help we need, this is unavoidable, to an
extent. The introduction of the single assessment process might
reduce the number of times that some people have to do this.

Direct payments and community care minister Stephen Ladyman’s idea
of personal care budgets might well give many people a greater
degree of personal autonomy, and, consequently, more privacy in the
end. We can only hope.

But, it seems to me, in the struggle for a claim to be considered
an integral part of this society, many of us (particularly those
with a disability that isn’t visible) feel the need to lead
semi-public lives. I have met several disabled people who seem to
be constantly irritated by the idea that they have to talk about
their difficulties, but keep doing so. How many times have you
listened to the minutest details of someone’s condition, their
afflictions and disadvantages, and their feelings, even though you
didn’t need to know?

The question is, why do some of us feel the need to do this? And
the answer is, of course, that we don’t feel we are properly
understood or accepted as equals.