'Language and communication are a defining aspect of humanity and, whether we realize it or not, the language we use is highly reflective of our own beliefs and perspectives. It is vital that we reflect critically on our own use of language and whether it aligns with our beliefs and values, rather than simply following professional conventions without question.' (Bulluss, E, 2020: unpaginated)
Blog:
Poems:
A Late Diagnosis
I'm talking, you've noticed?
I can't help but focus
on this changing landscape I chose to carve
Oh sorry you didn't ask?
Now here's where I start
because I now have a place I understand
You've never seen me stim
But doesn't mean I don't begin
To flinch, to flick,
wander around unable to sit.
See I've been autistic for 23 years
But you recoil in plastering fears
That my diagnosis will make me
'more Autistic'. I'm sorry for not being afraid of the A word.
For stopping playing games that I don't have a say word.
You won't witness the process of unmasking, and reteaching a decade of NT process tasking.
I'm tired
I can't help but focus
on this changing landscape I chose to carve
Oh sorry you didn't ask?
Now here's where I start
because I now have a place I understand
You've never seen me stim
But doesn't mean I don't begin
To flinch, to flick,
wander around unable to sit.
See I've been autistic for 23 years
But you recoil in plastering fears
That my diagnosis will make me
'more Autistic'. I'm sorry for not being afraid of the A word.
For stopping playing games that I don't have a say word.
You won't witness the process of unmasking, and reteaching a decade of NT process tasking.
I'm tired
'It's not a big deal' - A Masterful Year
Women support women, you say
But when I expose my not so pretty traits
you punish it, laugh and look away
Tell her to not waste her breath.
Because I'm not worth the breath.
See those words will be engrained, carved with
the others, on this breaking Woods
Because you'd beat and cut me down and much as you could.
I ran straight into a closed door that you told me you'd hold open.
And we shifted and continued thinking things might change, here's hoping.
Don't worry, they'd never be ableist,
It's pretty hard to be when you don't know how it's played.
With your saviour complex statement
I'm not sure here whose needing to be saved?
Every morning I counteract what I hear from whispers through the home.
Telling myself what I wish I'd always know
I am worthy.
I am professional.
I am allowed to be here.
I take up as much room as I need.
I get every piece of help to lift me to your level.
You thought I was loud before, just you wait.
But when I expose my not so pretty traits
you punish it, laugh and look away
Tell her to not waste her breath.
Because I'm not worth the breath.
See those words will be engrained, carved with
the others, on this breaking Woods
Because you'd beat and cut me down and much as you could.
I ran straight into a closed door that you told me you'd hold open.
And we shifted and continued thinking things might change, here's hoping.
Don't worry, they'd never be ableist,
It's pretty hard to be when you don't know how it's played.
With your saviour complex statement
I'm not sure here whose needing to be saved?
Every morning I counteract what I hear from whispers through the home.
Telling myself what I wish I'd always know
I am worthy.
I am professional.
I am allowed to be here.
I take up as much room as I need.
I get every piece of help to lift me to your level.
You thought I was loud before, just you wait.
One thousand Wednesdays
Let’s talk about masking,
Something you might not have heard
This is our tactic for fitting in,
Hiding traits confined in one word
It’s seen more in girls,
With the pressure to conform
We need to be a certain way,
So we are forced to perform
It’s tiring, it’s tricky,
it consumes most of my thoughts
because we are battling
so much without any support
That’s the thing with hiding,
No one knows when you need help
But we don’t have a choice
To hide parts of our self
See one thousand Wednesdays
And I’m still hiding my real face
Because we can shift as much as we like
But you’ll still make me feel out of place
It’s society that has forced me
to place on this disguise
because you and the world still rather hear me lie
then expose my discomfort,
you know you feed into
but course I “wasn’t Autistic until 22”
But I was just so good
At playing with your games
Of watching and changing
So, I could remain
Pretending to be like you
Always feeling out of place
Trying my everything to try and read your face
But you’ll still tell me
I’m offensive to NT’s
but Autisitcs are dying
from your flippant degrees
I’m not a disorder, not Mental health learnt
Not other or Them, or any of your terms
I speak for my community,
You can speak for yours
But disability is a pride word
I won’t be ashamed anymore.
Something you might not have heard
This is our tactic for fitting in,
Hiding traits confined in one word
It’s seen more in girls,
With the pressure to conform
We need to be a certain way,
So we are forced to perform
It’s tiring, it’s tricky,
it consumes most of my thoughts
because we are battling
so much without any support
That’s the thing with hiding,
No one knows when you need help
But we don’t have a choice
To hide parts of our self
See one thousand Wednesdays
And I’m still hiding my real face
Because we can shift as much as we like
But you’ll still make me feel out of place
It’s society that has forced me
to place on this disguise
because you and the world still rather hear me lie
then expose my discomfort,
you know you feed into
but course I “wasn’t Autistic until 22”
But I was just so good
At playing with your games
Of watching and changing
So, I could remain
Pretending to be like you
Always feeling out of place
Trying my everything to try and read your face
But you’ll still tell me
I’m offensive to NT’s
but Autisitcs are dying
from your flippant degrees
I’m not a disorder, not Mental health learnt
Not other or Them, or any of your terms
I speak for my community,
You can speak for yours
But disability is a pride word
I won’t be ashamed anymore.
Contextual Video
Writing Piece for SEN Magazine:
Ruby Woods, a 23-year-old disability activist, talks about her experience wearing the Sunflower Lanyard.
I found out about the Sunflower Lanyard Scheme through Sainsbury’s advertisement. When I asked in the stores they still weren’t widely known about, and I got passed from person to person when asking about how to get one. Eventually I received my Sunflower Lanyard after three separate visits and would wear it every time I was in the store. For a long time, the lanyard did not change much. I would still often shop with my noise counselling headphones to be able to regulate my surroundings. This meant sometimes I wouldn’t be able to take them off if a store was particularly loud and I wanted something that would show workers I wasn’t being rude, just struggling a little and maybe was struggling with verbal communication.
I have seen varied responses to my lanyard. Some people don’t know what it means and simply ignore it, others know a bit and offer support and some go the extreme and treat me as if I am a child. I really value those few moments when someone sees me struggling and offers a helping hand because, after all, that’s why it was created but those moments are few and far between.
The pandemic has brought many changes, especially in how we shop out in public and for many people with disabilities this has been difficult to adapt and adjust. The Sunflower Lanyard has now gained recognition, but not for its intended meaning - it is now being used as a symbol for mask exemption. Although this is a good use of the lanyard it leaves me worried at those who will take advantage of the scheme and take the resources away from those who need it. I personally choose to wear a mask when I am out as although it’s tricky for me, I know I could be a carrier as I work in a school, I wear my lanyard as well as my mask to show the workers why I may be struggling even more.
I worry that this new reading of the lanyard will cause confusion as to why I wear both a mask and a lanyard, but all it is doing is signifying that I have a hidden disability. I also choose to wear a badge that says ‘Autistic and Awesome’; one because it’s true, and two because it provides even more of an insight into my possible behaviours. No one should ever have to disclose their disabilities and I don’t feel a pressure to disclose mine but I choose to. I always want to provide more of an understanding and insight into the Autistic experience. I really hope this push in awareness around The Sunflower Lanyard Scheme will also push the awareness of hidden disabilities and the understanding that disabilities can be invisible. We as a community need to continue fighting for understanding; the more we speak up the more we can show the world what we’re made of!
About the author
Ruby Woods is an Autism Activist and Theatre Practitioner based in Plymouth. As part of her Master’s degree specialising in inclusive theatre, she has been creating online content about my Autism and part of that project was making a Tik Tok about the Sunflower Lanyards. The Scheme was started in 2016 for London Gatwick to help support passengers with hidden disabilities.
https://hiddendisabilitiesstore.com/
@rubywoodswork on Instagram
Ruby Woods on YouTube
I found out about the Sunflower Lanyard Scheme through Sainsbury’s advertisement. When I asked in the stores they still weren’t widely known about, and I got passed from person to person when asking about how to get one. Eventually I received my Sunflower Lanyard after three separate visits and would wear it every time I was in the store. For a long time, the lanyard did not change much. I would still often shop with my noise counselling headphones to be able to regulate my surroundings. This meant sometimes I wouldn’t be able to take them off if a store was particularly loud and I wanted something that would show workers I wasn’t being rude, just struggling a little and maybe was struggling with verbal communication.
I have seen varied responses to my lanyard. Some people don’t know what it means and simply ignore it, others know a bit and offer support and some go the extreme and treat me as if I am a child. I really value those few moments when someone sees me struggling and offers a helping hand because, after all, that’s why it was created but those moments are few and far between.
The pandemic has brought many changes, especially in how we shop out in public and for many people with disabilities this has been difficult to adapt and adjust. The Sunflower Lanyard has now gained recognition, but not for its intended meaning - it is now being used as a symbol for mask exemption. Although this is a good use of the lanyard it leaves me worried at those who will take advantage of the scheme and take the resources away from those who need it. I personally choose to wear a mask when I am out as although it’s tricky for me, I know I could be a carrier as I work in a school, I wear my lanyard as well as my mask to show the workers why I may be struggling even more.
I worry that this new reading of the lanyard will cause confusion as to why I wear both a mask and a lanyard, but all it is doing is signifying that I have a hidden disability. I also choose to wear a badge that says ‘Autistic and Awesome’; one because it’s true, and two because it provides even more of an insight into my possible behaviours. No one should ever have to disclose their disabilities and I don’t feel a pressure to disclose mine but I choose to. I always want to provide more of an understanding and insight into the Autistic experience. I really hope this push in awareness around The Sunflower Lanyard Scheme will also push the awareness of hidden disabilities and the understanding that disabilities can be invisible. We as a community need to continue fighting for understanding; the more we speak up the more we can show the world what we’re made of!
About the author
Ruby Woods is an Autism Activist and Theatre Practitioner based in Plymouth. As part of her Master’s degree specialising in inclusive theatre, she has been creating online content about my Autism and part of that project was making a Tik Tok about the Sunflower Lanyards. The Scheme was started in 2016 for London Gatwick to help support passengers with hidden disabilities.
https://hiddendisabilitiesstore.com/
@rubywoodswork on Instagram
Ruby Woods on YouTube
Community Feedback:
'Thank you so much! This is powerful. I'm in the process of getting diagnosed. it's hard convincing my parents...you help me feel heard. so thank you!' - Via Tik Tok, A Late Diagnosis
'Oh my goodness this is amazing and I needed that so so much THANK YOU!!! It's so true. I'm still undiagnosed (waiting for mine) and it can be SO HARD' - Via Tik Tok, A Late Diagnosis
'Love this. I was late diagnosed and it breaks me to know that I went so long trying to fit in when I was different all along. X' - Via Tik Tok, A Late Diagnosis
'OMG!! This is incredible! Sharing! <3 I was diagnosed at 41. I'm just learning how to remove my mask a little' - Via Tik Tok, A Late Diagnosis
'I love your poem though it really spoke to me' - Via Tik Tok, A Late Diagnosis