I’m tired of people trying to define me. My
whole life, people have been telling me who and what I am, how I should act or
react, and how I should live my life.
It started very young. When I complained
about bright lights or strong smells or loud noises, they told me “it’s not
that bad”, and I should “stop being such a whinger”. When I was a teenager, I
was told I “shouldn’t be so anti-social”, and I should “just make friends”, as
though this was easy. If I tried to say I couldn’t do something, I was told that
“of course” I could do it, and that I was just being “unco-operative”.
If I wore certain clothes that I felt
comfortable in, I was either ridiculed or pressured into wearing more
“fashionable” clothes. I was told that my behaviour was “rude” and “un-ladylike”,
and that I must be “nicer” to people, especially men. Later, after I became a
feminist and came out, a different bunch of women let me know I was expected to
be a “right-on-sister” instead - a different set of expectations, but no
My differences were cast as personal flaws
or deficiencies, and I was told that I just needed to “try harder”. They would
tell me to “just relax” and “be myself”, but when I did, they said “not like
THAT!” If I expressed my real feelings or thoughts, people told me I was weird,
or that “nobody” felt like that, and that I needed to “shape up my ideas” or
“get real”. Or they would tell me I “must” feel such-and-such, or have this or
that neurosis, because of my behaviour or attitudes. I was told I should “speak
up more”, or that I was talking too much and should let others have a turn. I
was “too quiet” or “too loud”, “unfriendly” or “clingy” or “nosy”, and on and
on. No-one, it seemed, was quite content with me, no matter what I did.
My (now-ex!) partner would oh-so-confidently
explain to me what I “really” felt. Or that what I felt “wasn’t normal”, that
it was symptomatic of all that was wrong with me, and that if only I listened
to her and did what she told me to do, and became what she told me to be, all
would be well. She told me exactly what sort of person I was, and what my
faults were, in great detail. According to her, I was a terrible lover, a lousy
friend, a bad mother and, she implied, deficient even as a human being.
When I became ill, some thought I was “just
being lazy”, or a “piker”. Even when I finally got diagnosed with Chronic
Fatigue Syndrome, it didn’t stop. There was the alternative healer who told
someone else that it was a “pity” I’d been diagnosed, implying I’d use it as an
“excuse” to “wallow” in my illness. And the counsellor who asked one day why
didn’t I “just go for a run round the block?” This same counsellor also once
spent almost an entire session ripping into me for being on a benefit. It
became obvious she had a low opinion of beneficiaries, and me for being one.
Even those who accepted the diagnosis and
meant well, would tell me I needed to “just take this seawater solution”, or do
this or that pet therapy of theirs, or some other “miracle” cure, or “just
think positively”. Or that the vitamins I was taking were “just expensive pee”,
always without asking me what worked for me.
And then I discovered Asperger's and
autism, and oh look, another lot of definitions. The ‘experts’ solemnly
pronounced me incapable of empathy, of having emotions, of understanding others
or even myself, of being able to relate to others or be a good parent, etc,
etc, etc. It seemed that, once again, I was a deficient creature, barely even a
human being, in the eyes of others who had never even met me.
Being autistic and physically disabled
aren’t the only things about me which others have used to try and define me of
course. Religions have tried to reduce my innate sexuality to a mere “lifestyle
choice”, and tell me that I’m a “sinner”, and even claim, as one NZ religious
leader has, that gays cause earthquakes (no, I’m not kidding).
Men have tried to ‘mansplain’ things to me,
told me I “should smile more”, or suggested I “don’t understand” how the world
works. Able-bodied people have tried to ‘able-splain’, in the same patronising
fashion, without bothering to find out first what I actually already know or
don’t know. Or they’ve treated me as if I was mentally deficient, again without
bothering to find out anything about me.
Sometimes even other autistics don’t
understand me, their image of me seems to be incomplete, or even totally wrong,
like the one who told me I was a “man-hater”, when I challenged his sexism. It
never seems to end.
But my feeling now is – NO.
I’ve had enough of this. I refuse to allow
my life, my very self, to be defined by anyone else, ever again. I am what I
am, and that’s good enough for me. And it’s just going to have to be good
enough for the world too.
Everyone has their bottom line, the point
beyond which they won’t and can’t go, and this is mine.
I don’t mean I’m going to go around wildly
starting arguments or pushing anything on anyone. I do mean I will stand my
ground, and no longer allow others to define me, to tell me what I am or should
be or how I should live my life. I will back off, but I won’t back down.
This is me. The real me, as defined by me.
Get used to it.