The debate on abortion and disability – ‘gently changing perceptions’

Standard

UK Parliament Inquiry

Some of you might know that an inquiry into abortion on the grounds of disability is currently taking place in the UK Houses of Parliament.

I heard about the inquiry through the superb blog Downs Side Up (let’s use DSU from now on), whose author was asked to give formal evidence there. It’s to the UK’s credit, by the way, that they’re conducting this, and with a good deal of transparency too.

It’s such an emotive debate–it’s an issue literally of life and death–but it strikes me that it’s being conducted in a really mature, open, and sensitive way. Zealots in other hot debating topics could learn a lot! The comments underneath DSU’s blog post, for example, are sensitive to people’s right to choose at the same time as understanding and utterly loving their own who have Down Syndrome and other ‘disabilities.’

We understand that it must be extremely daunting to receive the news that your unborn child has a disability, when the option of abortion is there. We can sense, acutely, the trauma of a mother who just, as the DSU blog writes, ‘wants a healthy child.’ But we are passionate and kind in our arguments for life.

In her evidence to the inquiry, Hayley Goleniowska of the DSU blog chose to complement the legal and practical arguments being heard by sharing some of the personal stories she’s experienced over her time as an advocate, to demonstrate the happiness which can come from this ‘disability.’ She says on her blog that her approach is to gently change perceptions.

*

What would I say, if I were asked to contribute to this debate? Over the years, I’ve known mothers who’ve gone down the path of abortion upon realisation that their child has Down Syndrome. I’ve known poor mothers who’ve suffered tragic miscarriages after having chosen to have a baby with a disability.

I’ve known, also, families whose most effervescent light is their kid with Down Syndrome. Our own family is one of them. We’re a family of driven, complicated, itinerant people–whose isn’t?–and Aine has taught us more about the real grain of life than anyone else.

Aine has a tenacity about her writing that I have never seen in another person (and I’ve known plenty of other writers, ‘able’ in body and mind). And she has a love of love itself which is unparalleled in anyone else I have known. Her capacity to see the good in others overflows.

Like so many others with her ‘disability,’ she has brought more goodwill and happiness to friends and family than anyone in her life’s network, shaming us who have the analytic and motor capacity but not (yet) the soaring, happy heart to go with those blessings.

This is hard to describe to people who’ve not known it first hand, who might think it is whimsy. But in my experience it is real.

This combination of qualities has produced a love of Shakespeare as well as soap operas like ‘Passions,’ adolescent and adult love, boyfriends, flirtations with waiters, Valentines Day cards (to her whole family!), a cleaner bedroom than both her bro and her sis, wonderful meandering stories of magical realism and mystery told over countless dinners, and well over 5,000 pages of poetry over the span of more than two decades of consistent, daily writing.

Could someone else have written the words that Aine has written? No, I don’t think so. Her makeup is unique, and the writing is a result. We hope the book we’re producing, as well as being awesome and bouncy, and multicoloured and cool, can be another little addition to gently changing perceptions.

‘Someone I can talk to when no one else would’

Standard

We spoke before about how we took Aine — our fabulous writer who happens to have Down Syndrome — to a famous London recording studio to record some of her poetry.

It’s our mission to put together a beautiful, bouncy collection of her poems from her journals and publish them, complete with beautiful illustrations.

Here’s her introduction to her poetry in her own words, from that misty recording (the link below is to the .mp3 file).

Secret’s Daughter Introduction

I began writing since I was six years old. It really seems to be a lifetime since when I first picked up a pen and began writing.

It is my writing that keeps a hold on me, like it is my rock that I depend and lean on.

I use my writing like a friend, to comfort and console me, even be there for me when times are hard and rough.

Like someone I can talk to when no one else would.

And each word is valuable, worthy and means much more to me than anything in the whole universe.

Because each word describes my feelings,

my thoughts,

my hopes,

my prayers,

wishes

and my happiness.

The Writer

Standard

Aine, who happens to have Down Syndrome (in case you didn’t check our Q and A!), is a writer of poetry, but also of screenplays and stories. She has also been an advocate for those who are disabled, and has spoken publicly in many places in support of what she calls here ‘her people.’

Here’s a poem–an elegant manifesto of what she’s all about.

 

The Writer

by Aine Rathwell

 

I am the writer of my dreams.

 

I create a whole world

So different to the real world.

 

I am a supporter

To my people

Who listen and stand up for themselves.

 

I believe in things

That others do not believe in.

What path to self-publication to take? (Part 1)

Standard

Our labour of love, The Secret’s Daughter, is many things. One thing is for sure: it’s an exploration into the weird and wonderful, and confusing and complicated, world of ‘self-publishing.’

We want to be experimental. We’re determined to give it our best shot–make a book people will love, find the people who will love it, and get it to them.

Yes, it’s a book of poetry by a young woman with Down Syndrome rather than a thriller aimed at a mass market, but that doesn’t mean we shouldn’t take the practical side of it seriously. On the contrary.

So we need to get to grips with it and make the right decisions. And which path to choose to self-publication is a huge decision which can be very confusing.

But first things first: why self-publishing at all?

The consensus in the many great and useful blogs I’ve read since starting this project seems to be: with the state of things at the moment, the question should really be: why not? We’re on the cusp of the great self-publishing wave, with the rise of e-books and print on demand technology propelling the 81% of us who feel we have a book in us to go ahead and publish.

We can do so for a tiny audience of friends and family, or we can have a whimsical thrust at fame and fortune; the technology allows us to choose our poison and our niche.

The old process of endless submissions, then eventually finding an agent (or not), then eventually finding a publisher (or not), but more than likely ending up in the ‘slush pile,’ or waiting for aaaages for a half-hearted launch while the small number of mega-authors bask in glory fuelled by huge amounts of the publishing companies’ publicity spending, isn’t the only way, or even the best way, is the new consensus.

That’s not to say that agents or mainstream publishers aren’t important: we’d still of course love to end up there (who wouldn’t want their book published by Penguin?), but we want to prove our book beforehand and we’d rather not leave it up to the fates.

We want to get the book in readers’ hands and the straightest path to doing that is to do it ourselves. With a bit of application, we can make a beautiful artifact.

There are now a large number of companies which can help us do it, bringing together all aspects of book production under one roof and offering decent rates for various levels of support. Or we can go it alone, sourcing our motley crew of printers, designers, distributors etc. for ourselves. Not surprisingly, a huge market has grown from that basic, key insight: four-fifths of us are interested in publishing our writing.

At the moment, our aim is to ‘go it alone,’ and use crowdfunding to assist us. In the next few posts, I’ll go through my working on why we are (at the moment) going along this route, looking at the other options out there from our perspective.

 

 

Standard

Zeh Lezeh (For One Another)

Friends,

Again this year we are pleased to join with several other foundations in supporting the ReelAbilities Disabilities Film Festival.  This collection of carefully curated films provides surprising and enjoyable glimpses into the lives of people around the world who happen to have disabilities.  The full schedule of screenings and venues can be found here; those of you in Boston are warmly invited to join us for any and all of them.

–Jay Ruderman

View original post 353 more words

The Ghost’s First Love

Standard

Aine’s journals contain many secrets, supernatural things, and the twists and turns of love…

 

The Ghost ‘s First Love

by Aine Rathwell

 

One night

someone came back

from the dead

and hunted me.

 

She appeared in front of me

and frightened me,

I felt as if I could scream.

As I held my breath,

she spoke

about her story.

Suddenly

my room disappeared

and she looked

straight at me.

Her words are eerie

as she spoke

these words:

 

“I lost my first love,

for my feelings

were too strong,

too powerful,

had broken my heart

with pain.

He never understood me.”

 

Her eyes have changed

colour to a pale colour.

Her voice led me

to feel the same way.

 
“The love was built

on a bridge of reality

and fantasy.

It’s stronger

than anything.

Too strong

for me to handle.

Distracted by love

for I am too frightened,

too scared

to learn how to try.”

 

Suddenly she disappeared

by the picture of my love.

I knew for once that I had to,

to save my love

before my feelings harm him.

I stood up and took the picture,

put it under my pillow

and drifted away into sleep

to save my love.

From Bohemian Rhapsody to the Secret’s Daughter

Standard

If I told you that the story of The Secret’s Daughter began in the same place as Queen’s Bohemian Rhapsody was recorded, would you believe me?

Aine recording 'The Secret's Daughter' at a London recording studio

Aine recording ‘The Secret’s Daughter’ at a London recording studio

It’s true. It was a stinking cold day in London, with Brick Lane’s clanging busyness safely soundproofed just outside, and Autumn mist in the morning bleeding into the afternoon’s inevitable grey drizzle. Here’s what happened.

It was maybe six years ago. The idea had arisen, I don’t know from where but it was from someone in the family, to do a CD of Aine reciting her poetry. The idea developed: it would be great, we thought, if we could make the recording itself an event–a really fun day out.

So, we decided that upon Aine’s next visit to London–she lives in Canada–we would book for her a proper recording studio and get a proper, perfect quality recording out of it. With my little sister, she chose a selection of poems to recite on the occasion. One of them was called The Secret’s Daughter.

There was something so alluring in that title, a mystery wrapped in Aine’s particular way of using language, that it quickly became the obvious title for the entire recording.

And so we booked a half day at the London Recording Studios. And on the morning of the recording session, we got up and took the tube east. Aine, charming and enthusiastic as always, had dressed up for the big occasion, never mind that this was an audio recording!

But there was a big problem: she had managed to catch a cold somewhere in the night! When she spoke, you could hear the snot. I mean really hear the snot.

We arrived right on time. The studio manager had been told only that we had to have everything set up for immediate use because the unnamed recording artist was in town for one day and one day only; he must have thought that the golden age of the studio had begun again at long last, and that a reclusive, paparazzi-evading A-list star would walk, complete with entourage, through his doors.

He didn’t seem disappointed, though, to see come through his once-famous entranceway a semi-urban Canadian family fronted by a young lady with Down Syndrome in her best blouse. In fact, he was the perfect shaggy-haired, acid-dipped Achilles gentleman, and spent the day in enthusiastic concentration to get the sound exactly right.

Aine was a paragon of patient, snot-clogged virtue. It’s disconcerting to sit in a perfectly silent booth with eyes staring at you from behind glass, with chunky earphones on your ears, surrounded by Stratocasters and bass drums, with nothing but your own scrawled poems for company, and even these so distant, clipped to a music stand.

But she did it. Brave to the bones, just like when she climbed Mount Sinai. It took a lot of takes and some clever electronics from our shaggy-haired friend. And it still came out a bit snotty. But it was how the idea first became nested in her minds.

We knew then that we would be returning to it.

 

Illustrations, illustrations, illustrations!

Standard

Right, it seems everyone I know in this city is ill at the moment so it was something of a slow weekend!

So we’re really starting to think about how the book will look, and how to get illustrators for it. There’s a great artist in British Columbia who we’re talking to about this. It’d be a completely new direction for him—he’s used to painting large still life arrangements on canvas, full of depth and faraway thunder—but we think he’d be able to do a great job and we’re open to exploring the possibilities. The obvious solution isn’t always the best.

Let’s see how the talks go; we’ll share what we can of course.

So what’s our vision?

It’s for a book which is just exploding with colour throughout, with lots of bright places but some subdued and dark places too, where secrets and sadness lie, and Aine’s handwriting intertwining with the colour and the illustrations, making something which is truly beautiful and coherent.

We want something universal, which will be loved by kids and adults, people with Down Syndrome and other disabilities, and poetry lovers: so a bit of childish zeal, leaping psychedelia, some depth, lots of love, with mystery and fluttering emotion, and something which resonates with Aine’s words, bringing them to life even more.

We hope it’s not too much to ask!

The big question is: where could we find an illustrator who could do this? And should we have just one illustrator or many? Should we ask illustrators who have disabilities? If you look online, there is some incredible work being produced. Take a look here and here. Should we ask well-known illustrators?

So: how do you think we should proceed? What’s our best course of action? And have you heard of, or do you know personally, illustrators both unknown and famous who’d be well suited to the task? Or are you yourself the perfect illustrator for the job?! Let us know!

Explorations

Standard

One thing that this blog has already achieved is to expose me to the great big community out there of readers, writers, families who are sharing their uplifting and often heart-rending stories, innovators, social entrepreneurs, and others who are working to defend and promote the lives, skills and creativity of those who are called ‘disabled.’

I’ve been looking through lots of stuff, with the help of newly installed but ridiculously expensive Internet here in Sierra Leone, because I know that this project will succeed or fail depending on the support it gets from people like you, who have taken the time to read this.

From the family whose goal it is to put Ipads into the hands of more people with disabilities, to the creation of ‘Easy News,’ a newspaper aimed at those with learning disabilities to help give them the gift of connectedness, to the school of the visual arts for people with Down Syndrome in Mexico (who haven’t yet got back to me about partnering up on this project – come on people let’s make it happen!), to the man with DS who’s set up his own apparel company, to the great Internet advocates and information sharers like ‘Noah’s Dad,’ to the army of writers and readers on Wattpad with their sexy vampire poetry (don’t ask me, I’m as clueless as you why it’s popular!) and the great words of support I’ve received from some of them.

I want to thank those who’ve said such kind things already about our project. Each word really counts, and will keep us going.

What we want to add to this–and what we want there to be more of–is an example of someone with Down Syndrome who has produced something creative and beautiful for her own community and the wider world which is taken seriously by those in the ‘mainstream’ of her discipline. To prove it works.

That’s why we’re going for kickstarter.com funding. If the project’s great, it’ll get the funds. If we need to work on it some more, it won’t.

Aine’s creative voice–and you’ll keep reading this!–has something to it, a particular angle into life which can crack you open if you are alive to it. It deserves a place within contemporary poetry and in the hearts of many readers.

And it’s not just Aine of course. There’s so much potential out there among people like my sister which is either overlooked or not getting the attention it deserves. I hope we can change this. It would be so fitting if Aine, who has worked as an advocate for many years for people with disabilities, could inspire these people through her favourite medium of poetry and be inspired in return by the response she receives.

my home is the blue, blue, blue hills

Standard

On the desk where I work, with the Atlantic ocean spread out in front of me, is a photo of myself and my two sisters taken in about 1990.

We’re on top of Mount Sinai in Egypt, the supposed place where Moses received the Ten Commandments from God. Aine’s hair is a crazy seagull’s nest from the wind; mine is a straight upside down soup bowl. My main memory from that climb was the euphoria of seeing a blue portaloo halfway up! A comfort Moses surely had to do without…

The travelling and writing bug is definitely in my family, since then and even before. My younger sister is living not too far from Mount Sinai at the moment, and I’m here in lovely piratical Freetown, Sierra Leone. Aine, the eldest sister, has been to even more places. And so some of Aine’s writing is inspired by all this coming and going.

I’m struck by the one below, which I’ve posted to Wattpad too. While we’re waiting for the poems to be digitised, I wanted to give readers something interesting to read! So here it is – the first bit of writing by Aine posted on this site:

 

Red Nile, Blue Hills

I bathe in the red, red, red nile, here I go,
swimming in the red nile.
I float and glide like a red mermaid
and flip and splash my red feet like a fish
along the nile
and pass the blue, blue hills that go by,
I watch the colour clashes with the blue, blue sky up above me.
They’re even more breathtaking then I can ever imagine,
more beautiful then I can ever breathe in.
The red nile and the blue hills
represent the mood I am in.

 

When I swim up to a red waterfall, I hide
while I wash my red hair in the red water shower
while singing a mermaid’s song
of the red nile and the blue hills.
I will let no one know that I even exist,
this will be my secret and my alone.

 

They can listen to my song,
my song of my love
for the red, red nile and the blue, blue hills
along the nile of my home
but they can not know I live.

 

My home is the blue, blue, blue hills
and the red, red, red nile
is where I remain,
the secrets of the red, red, red nile and the blue, blue, blue hills.