Today
looking at Twitter, something I saw triggered a memory of a young lady I had
the good fortune to work with some years ago. I’ve been involved with an
organisation that gives training and performing arts opportunities to people
with an intellectual disability for 25 years or so. I’m lucky to have been able
to have crossed paths with this lady. Her name was Joyce.
To give context,
it’s worth me sharing how it is I came to belong to a not for profit
organisation that includes adults with a disability. My family are Catholic. I
was part of a youth group and was invited to some kind of youth spiritualty
sessions. They were asking the youth group to visit people with a disability on
the weekend as part of an outreach service. I don’t really identify anymore as
being affiliated with any one religion, but I do seek spirituality in an eclectic
way and it’s helpful to me form the point of view of philosophy and betterment
to do this. It turned out that I was the only one who showed up at Janefield
one Saturday afternoon. I was about 16. I was alone in a large institution for
people with a disability. When I arrived there was a skeleton staff, not nearly
enough people to support the residents. A lot of the people had missing teeth
and were quick to touch me, cling onto my body and ask a million questions.
There wasn’t a lot of life on the walls. It was very white. It was the
afternoon and many of the residents were already wearing pyjamas. I only stayed
for one visit. The experience stayed with me though forever.
I’ve heard
many stories from people and family who lived like this in Institutional care
and I’ve learnt never to make judgements about the where or why of how people
ended up I the care of the state. I’ve heard the stories of abandonment and the
stories of doctors or church bodies coercing families to let go of their
children. I’ve heard stories of shame and sorrow, of emotional collapse in families
not provided with the right tools and support to keep their children at home
and not being provided with a good respectful alternative. It’s a complex issue
that arose at a time of shameful prejudice towards people with a disability and
a real lack of understanding around what it is to be human, what it is to be
smart, what it is to be different or in fact the same too.
I was given
the chance to work in theatre on a project that involved some of these people
later on. It was a collaboration between a youth company I was involved with
and a company of adults with a disability. I’ve lived with those people and
newcomers to see positive altitudinal change towards people with a disability but
there’s still more to be done. The challenge is not over.
Joyce is a young
lady I often remember with great fondness. I would love to affiliate with her
grace, but I’m not nearly as poised and peaceful in temperament, though I try.
She had a curious fixation with the story of Princess Diana and once asked me
privately if she had lived a royal, would she, with her disability, been
granted a Princess role. This was a difficult question to answer. Could she
have filled the position? Absolutely. Would the world have embraced her at that
time (it was some years ago) I’d like to think so. She enjoyed the stories of
Shakespeare and was Juliet in a shadow puppetry play and it was fitting because
Joyce was the softness of a shadow in the more positive sense of love. She was
casting something outside of herself in soft edges for others, though not
always feeling as bright as the middle of noon on every day. She had a soft way
amongst some other big divas of the group. Her place was vital in this way. One
could depend on Joyce to deliver a middle calm, a heart that barely wavered
from dependability. She was non-threatening and she knocked out of the park
those who perpetuated misunderstandings around having to always stand out via grandeur
or loud shapes and sounds. She stood out because she was a very grounded yet
dreamy soul and she was therefore often asked to take on bigger parts. We
needed her and we needed the other kinds of people too but without Joyce I really
noticed her exit from the company. Fortunately, another young lady, Stacey,
joined the group who was similar and who became an essential centre heart and
lifeblood of the group for many years. Those women were powerful in their “slow.”
I don’t mean that they were cognitively slow for they were quite the contrary.
These women were methodical, loyal like a lion at the helm of a pride, viciously
gentle, so gentle that the effect was a love you might never want to leave, a
need you would fight tooth and nail to retain. They took their time, they stood
back to let others come forward in the right moments, they paced themselves in
time with nature which is seasonally much slower than internet speed or
flashing advertisements. They were very
smart. I’ve seen some very sad quotes written by “notable” people that get read
as truth that are a little on the side of prejudice and sadly I’ve not the
following to spread the quotes of fast wit or profound beauty that I wrote down
in a book during my time doing this kind of work. I’m writing it out there in
the sphere of internet land anyway because its still my right to have a say. There’s
a few though below, and you will see that those people you went to school with
who ran around mimicking the disabled were really the only one who could be
vomited on with a word like “retard.” It was the wrong thing to do because there
was nobody with a disability there at the time to be in on the joke. Often
those people were in institutional care. The only people who behave this way
are in fact the only people we can call “retarded.” I know nobody else who
falls into such a category. We all make fun of each other of course and we all
carry disabilities and ribbing one another is all about getting the tone right.
There’s people who I work with who might tell me I need to go off to the “funny
farm” while I present a hair brained idea to them. I’ve heard them say the same
to each other. I’ve seen them mimic each other’s disabilities in a way that
they understand as a joke and they can handle that, but they also know there’s
lines they can’t cross with certain people in our group. They usually, not
always have the ability to know when mimicry is fun and when it’s rude and it’s
not at all dissimilar to the real world. We have a few dickhead moments from
people, but for the most part the tone is positive, jovial and alert. Nobody is
perfect but Joyce and Stacey made a sisterhood in love and respect that came
pretty close.
Here’s some
of the Quotes I hold dear.
“Sometimes,
I want to go fly to the stars, but if I got there, if we got there, we wouldn’t
wonder what was there at all” Tracey Treller RIP
“Would I be
a Princess if I was born there? Would they give me a crown? Everyone should say
yes, right? Joyce
“I’m an
uncle to a beautiful girl called Ruby. An uncle is the same as a husband, the
same as a brother, the same as Hercules or a mother or Neptune. “
Duane
“I’m Taliban.
Am I? What am I Nicla. Sometimes I’m Taliban to people. Sometimes I am Taliban
to me. I played Shakespeare’s Taliban. I’m also a king. Not always. Depends. I’m
Dr Who all the time. “
Peter
Phillips RIP.
“I’m sexy.
I’m trying to lose weight. I’m wild. Could you help me, I’m too shy today? It’s
my turn. I’m the Queen.”
Shaa
“My name is
Jenny. My ship is coloured pink. I’ve never been on it yet. It’s made of
pearls. It belongs to someone else. I sail to the sun. “Jenny
My name is
Clare. My ship, it’s colored like my face. It’s to sail away on. It’s to fly
away on. It’s made of a wild horse and belongs to home. I sail it to Doreen. “
Clare.
Your arms
like vast love 
