As a disabled person, a dilemma now faces me for the first time.
Until now, I have managed my own needs, asking for help from no one
except my partner and, occasionally, willing workmates and friends.
This has maintained my independence and control over my life.
However, over the past year the effect of my impairment on my
personal and social life has increased to the point that I now have
to re-evaluate my situation.
Confronting the possibility that you may need some personal
assistance is a big enough deal for any disabled person to face.
It’s even more of an issue if you identify as lesbian, gay,
bisexual or transgender.
I know all about equal opportunities, diversity strategies, and
valuing difference policies. But by the time the policies have left
the office of the chief executive and director of social services,
they are often diluted and have little effect in practice. Or they
become a piece of paper in the staff handbook.
After I have gone through the indignity of the most personal of
questions during my care assessment – “and how do you wipe your
bum, Miss Shook?” – and I am granted some personal care hours, what
then? Will the person who is carrying out my assessment and making
decisions about my future really consider my needs without making
judgements about my lifestyle?
I may receive some care from social services. But will the people
who arrive be respectful and non-judgmental about the books and
magazines that I read, the friends that I have, and the way I
choose to spend my time?
Will they appreciate that I need assistance to attend the lesbian,
gay and bisexual Mardi Gras festival or the meetings of the
organisation of disabled lesbians, gay men and bisexuals of which I
am chairperson? In the past, I have had some very humiliating
experiences, when home helps have seen it as their duty to lecture
me on the evils of homosexuality.
I may apply for direct payments, which would give me the freedom to
employ people of my choosing who will be able to support me without
a hidden agenda.
I am able to do this, but what of those who are less able to
express their wishes or who live in residential care? Equal
opportunities policies are worth nothing if the words do not
translate into actions and make a difference to people’s lives,
whatever their needs may be.
Karen Shook is trust adviser on disability, equality and
user involvement at Brent Primary Care Trust and co-chairperson of
Regard, the national organisation of disabled gay men, lesbians and