There's
been a long debate about how one should refer to Autistic people (and
people with disabilities in general). It's a heated affair with
strong advocates for either side. On one side Autistics are incensed
that people would refer to them in a way that separates their
Autistic essence from their identity on the other parents, disability
advocates and researchers want to acknowledge the individual's
humanity first and separate it from the disability which brings with
it challenges and potential discrimination. Of course there is
overlap with people in the categories I've mentioned belonging to the
opposite camp as well. I guess the message I want to convey here is
that person-centred language is not appropriate if the person being
referred to considers what is medically defined as their disability
as a core part of who they are and how they perceive the world. To
use person-centred language in this context is to accept only part of
the person, dismissing a key part of them as being inferior.
I
find it interesting that the groups within the disability community
which vocally object to the use of person-first language are those
for which their disability fundamentally changes the way they see the
world: The Autistic community, the Deaf community and the Blind
community. It's possible to separate a missing limb from who you are
internally as a person, not so the very nature of your experience of
the world and everything in it. Perhaps the use of
person-first language is valid outside of these parameters but when
one sees the world fundamentally different it contributes
significantly to who you are and how you perceive and interact with
your world.
If
you struggle with the concept or aren't sure about it I would
encourage you to read an article by Oliver Sacks, the world-renowned
psychiatrist best known for his books of interesting case studies
such as 'The Man Who Mistook His Wife For A Hat'. He once wrote about
a man named Virgil who had lost his sight early in childhood and
gained the ability to "see" in his 50's. What might seem
like a miracle, actually proved to be very difficult for him. His
brain and how he perceived the world had great difficulty adjusting
to this new bombardment of visual stimuli. It made his life harder to
navigate, not easier. I think this article provides interesting food
for thought which takes the 'separation of disability and identity' ,
'cure' and 'normalization' arguments out of the black and white and
demonstrates the shades of grey that defy the assumptions people tend
to make. The article can be found here:
http://www.willamette.edu/~mstewart/whatdoesitmean2see.pdf
Working
out and accepting who we are is a massive part of life and happiness.
How much harder is that process if people are constantly telling you
that who you are isn't good enough, and worse that you're always
going to be that way no matter how hard you try? This is where the
negative stigma and deficit based perceptions of autism can be
damaging. Autistics start out lower on the ladder of social skill and
acceptability than most people and have a long way to climb to try
and reach a point where they can interact successfully enough with
the world around them to be accepted.
If
they are constantly told to correct their behaviour or that they are
somehow wrong that contributes to low self-esteem and anxiety which
can make it even more difficult to be motivated to keep trying and
learning. Feeling powerless or unheard also doesn't help. Is this
about blame - no. This is about respect. This is about drawing a line
in the sand and saying who are we, that is society, to say that one
person is more valuable than another? Who are we to say that one has
more right to have an opinion than another, particularly about things
which directly affect them and those like them? Who are we to say
that there is one "normal" way of being and anything
different to that is unequivocally and irrevocably less? At the core
of the idea of "cure" is the concept that someone is
defective unless they are fixed.
In
French the way you ask for someone's name is effectively "what
do you call yourself?". I think we have the right to identify
and introduce ourselves how we see fit. If someone says I am Autistic, respect it. If they say I am a person with autism, respect
that too. But don't let convention get in the way of someone's
identity. Have a default mode sure, but respect the fact that people
have a way they want to identify themselves and be acknowledged. If
someone doesn't refer to the fact they're Autistic as a disability,
don't refer to it as one around them. Be respectful, be accepting and
be empowering of that individual. Frame them by their strengths and
not just an endless list of things that need fixing for them to be
worthy of inclusion. That's assimilation not inclusion.
If
you're still not sure in a given situation ask yourself does your use
of person-first language make the person feel valued? If that is your
intention behind using person-first language then it is a natural
progression to be open to changing your language in order to make the
person you're referring to feel accepted. Words are highly
contextual. They are powerful. They can make people feel included or
marginalized, valued or patronized.
If your intention is to accept
someone then use your words in a way they find accepting. Accepting
of who they are, how they identify themselves and how they see the
world.
