Showing posts with label Privacy. Show all posts
Showing posts with label Privacy. Show all posts

01 May, 2022

...MAY it not stop here...

From our Team:

 Oh hey ~ it's May.

Dim the light...close the curtain...pack up the props and the posterboard and the donation jars.

April is over.  Autism is over. 

???

I know...I know...you're thinking "Wait, weren't they just complaining about April and all the emphasis on autism all month long?  Shouldn't they be glad it's over?".  So much YES and so much NO, all wrapped up in the ongoing and exhausting life-work of true advocacy. 

April is a harsh spotlight on all the things that don't work the way they are intended.  It uncovers the dirt and grime of for-profit agencies, the victim/saint/saviour narrative of the "warrior mom/dad", and the drowning out of actually-autistic voices. It serves as the shady producer that allows all the actors in our lives to ask intrusive questions and make inappropriate (and usually false) generalizations about autistics, and pay lip service to our asks and truths.  It is the equivalent of putting a Band-Aid on, without first cleansing the wound and applying an antibiotic to kill the infection.

April is hard.

We tire of the same old rigamarole: the money grab, the empty promises, the good intentions, and the dismissal.  We tire of the obligations to teach: both the obligatory, implied social one, and the self-inflicted one that we steel ourselves for, brushing aside our discomfort and disgust.

April is hard.

Our very existence is turned into a month-long meme.  A series of feel-good stories to force-feed guilt and open wallets.  Our diagnosis is weaponized, in the hands of the public, and our words turned against us as "proof" of our difference...our deficiency.  Organizations spend huge budget dollars making our personal struggles into fodder for the public, using our very private challenges to increase their bankroll.  We're put on display at "autism-friendly events" where volunteer hours coincide with photo "opportunities" where our unique communication is assumed as permission. 

April is hard.

When we are lumped into a caricature...

When we are reduced to a stereotype...

When we are feared or pitied as an epidemic...

April is hard.

But so is May...and the months that follow, until April looms on the horizon once more.

Because May 1st - the day after April - the day after Autism Awareness Month- is when the real work begins. May 1st is when, if we're lucky, our message gets through the static that April created.  May 1st is when the bright, shiny distractions of awareness are boxed up and our words and art and expression have the tiniest chance of finding space on the playing field.

It's May, and autism is still here.

It's May, and autistics are still here.

It's May, and we're asking the same questions.

Do you hear us?

Do you see us?

Will you be our allies?

Will you help us work toward an April 2023 that doesn't damage our community?

Will you help us spread our expert knowledge/experience/advice so that the autistics that come after us will be better equipped?

It's May.  We're waiting and watching and listening.  We're hoping you learned something.

04 April, 2022

...my words > your understanding...

 From our Team:


We’re four days in to April, and I’m already running out of steam.
Reality check:
Consuming the laborious efforts of autistic advocates and then having the audacity to argue with them in the comments section because your neuro-typical self can’t be bothered to “do the research” is 100% equal to silencing the oppressed.

  • We have, for far too long, been driven ‘underground’ and run off our own homefield by the very loud voices of the righteously indignant non-autistic advocates.
  • We have, for far too long, been hit on all sides by never-ending requests and requirements to reframe our communication to better suit the neurotypical narrative.
  • We have, for far too long, been purposefully and with intent exhausted of our own mental energy by the needless nonsense and the relentless justifications of those who insist that the puzzle piece is “doing such good” and that families affected by autism matter so much more than our actually Autistic selves/voices/work.
And for what?
So that we can spend the entire month of April being closed in all sides by blue lights,
and puzzle pieces,
and practical strangers (if not the actual bullies who’ve harassed us in school for years) thinking it’s completely appropriate to barrage us with questions about being autistic.

What is this thing you call privacy?
Oh…it only applies to you.
Got it.
Reality check:
Autism is Neurodivergence.
Neuro-Divergence.

Divergent:adjective
        • the process or state of diverging:
        • a drawing apart (as of lines extending from a common center)
        • DIFFERENCE, DISAGREEMENT
        • a deviation from a course or standard
        • (of opinions, views, etc.) different; no longer similar
Divergent. The very state of being different.
Autistic. The very state of being different.
My words
don’t need to be altered for you to better understand them.
Your understanding
needs to be altered by them.

27 February, 2019

...Night to Shine 2019...

Crossposting  one more piece here.



"Thank You" hardly seems to encompass our gratitude to Stonecrest Community Church, Tim Tebow, Join the Night to Shine Team, Tim Tebow "Night to Shine", Fitness-Essentials and all the volunteers, providers, caterers, service personnel, etc... (Please tag yourself if I have forgotten to mention you!) whose combined efforts created last night's "Night To Shine Prom 2019" at Stonecrest Community Church here in Warren.
As you can well imagine, the path of parenthood when your child is disabled is fraught with concerns. There are the very real, very present fears regarding developmental milestones, physical capabilities, intellectual hurdles, effective communication, etc... The list goes on infinitely, as each disability and its co-morbid conditions presents differently for each individual. But above all these, overshadowing us as we sit in 504 and IEP meetings...as we ferry our children to doctors and therapists and service providers...as our days revolve around adjusting and accommodating and advocating...there is one common concern to us all...
"Will my child be accepted for who he/she is? Will the world make a safe space for him/her? Will he/she be included? Will anyone else ever see past his/her disability to the WHOLE-the intentional-the perfectly imperfect and imperfectly perfect person he/she/they/we all are? Will my child have the same chances that we all deserve?"
These. These are the questions that percolate in our minds at 3am. They are the questions we can't set aside. They are, as I have said to my friends, the constant fear between each heartbeat.
What you would have seen (and maybe you did) had you been in attendance at last night's event, was an answer to those fears. Albeit, a temporary reprieve, but a reprieve nonetheless. We parents assisted our children and young people with wardrobe choices in advance of their big night. We helped them carefully select their dresses and tuxedos and suits. We set up hair appointments and makeup sessions. Some of us blocked out time for shoe shining, or for a quick adjustment at the seamstresses. We encouraged our children as they prepped for their grand entrance. And we, or at least I, blinked back the tears and choked back the emotion as we headed out the door with our beautiful, prom-ready children. We knew, full well, that this was our moment as much as it was theirs. We knew this moment was a gift to us; one in which we got to be "just parents"...not special-needs parents. Just parents, sending their children off to prom, knowing we didn't have to breathe in and out our fears for their safety or welcome or acceptance or inclusion. And so we arrived at Stonecrest last night, we parents and children and young adults. We arrived proudly.
My son, like all the honored guests, was warmly greeted. He was paired with a volunteer. He was escorted down a red carpet, immediately adjusted from a cheering squad to a quiet, welcoming wave to accommodate his particular sensory needs. I watched as they walked down that carpet, and snapped this photo quickly, while fiercely blinking back the tears of pride and joy that sprang up.
I, like many parents, headed upstairs to be welcomed myself to the parent respite area. A warm greeting again, and a warm beverage by way of the coffee/tea bar. A meal I neither had to cook, nor adjust to my child's needs or preference. A massage. A table full of friends, old and new...other parents such as myself, for whom our "language" is a familiar one. We shared "war stories" from our recent IEP meetings and case-managerial conferences. We laughed over the things only we can find funny. Occasionally one or another of us would "sneak" down to get a glimpse of our children, or stand in front of one of the tv screens trying to pick out familiar faces from the crowd dancing the night away downstairs. We proudly shared photos of prom prep with one another, each of us connecting in our shared joy. Each of knowing that this night was enough to carry us through another 364 days.
Thank you, is surely not enough to encompass all that. Thank you doesn't say enough. It doesn't acknowledge the individual efforts that made last night beautiful in every way. The time and attention to detail. The individual and en masse decisions that allowed for each child and young adult to experience prom in a way that was wholly accepting and wholly tailored to his/her needs. It doesn't even begin to touch on the warmth our parent-hearts felt as we stepped in those doors with our children.
I want to make special note of the familiar faces I saw last night. Staff members from the Warren Township Schools that had volunteered their time and energy to our children once again. My son saw his old gym teacher. He saw a teacher who so embraced him (and all disabled persons) for exactly who and how he is, that she was willing to give him this night. He saw his favourite custodian from his elementary years and relished in the familiarity of that face and that smile and that warm, welcoming disposition. That same custodian gave perhaps the most moving, heartfelt and genuinely beautiful speech I have heard to parents later that evening.
Forgive me for getting personal/emotional here, but needs must. I need you all to understand that for this night, disability did not exist. For this night, it was the world as we hope it will be for our children. For this night, it was just ability...just young people being who they are and how they are and blissfully dancing the night away (or in my son's case: talking the night away, in the quiet room, chatting with his buddy about Transformers and 3D engineering and life!). It was prom. It was beautiful and it was heartwarming. And it was a reminder that he, my son, is growing up and out and past my ability to safely enclose and protect him. It was a reminder that there are people out there who WILL embrace him, just as he is.
Thank you to Stonecrest Church and the countless volunteers. Thank you to the photographers and musicians and djs. The television crew. The chefs and waitstaff. The greeters. The sponsors, Thank you to Laura L., and custodian Dave. Thank you to Clifford J. and his team. Thank you to Brynn Stanley. Thank you to all those (again, do tag yourselves and take a bow!) who made this a night of true inclusivity, celebration and love!
P.s.-this is the Warren I think we can all strive to be.

...on Night to Shine, respect is fundamental,,,

In advance of the evening, I posted this and shared it publicly.  I share it here now so there will be a source, in future years, for the sharing of it across multiple platforms.


Parents of Warren Township students, Parents of WHRHS students:
Tonight is "Night to Shine", a prom for disabled young people. Across the nation, churches in tandem with the Tim Tebow Foundation will be hosting this event, with the help of local student and youth volunteers. There are several NJ locations, including one right here in Warren. Some of your children may be volunteering as greeters, as buddies, as makeup artists, etc... For that, we say "Thank you".
Please, remind your children that as they volunteer tonight they may see peers of theirs from school in attendance as guests. Please, remind them that as volunteers, they have a responsibility to respect the privacy of those attendees. Many of those young people have not disclosed their diagnoses. Many of those young people fear being "outed".
Our family, and the families of those attending tonight ask that you remind your children that it is not their right to disclose information about those attending to anyone, least of all their peers and schoolmates.
Thank you.