Friday, March 21, 2014

Welcome to the T-21 Blog Hop - March 2014: World Down Syndrome Day

Today is World Down Syndrome Day, a day that we celebrate those with an extra copy of the 21st chromosome.

Our festivities however, always seemed to be tinged with a note of sadness, as those with Down syndrome and other intellectual disabilities continue to be discriminated against in all aspects of life.  From our everyday common language, to our medical systems, to our laws, to our education systems, we continue to deem those that are a little different as defective, inferior, not worthy.

Life, not worthy, of life.  Although it has been many years since Aktion T4, these eugenics principles still linger.

Of the many little educational factoids that you may read today about Down syndrome (including this list here), somewhere between 5 to 10 percent of those with an extra 21st chromosome are also diagnosed with an Autism spectrum disorder.  The intersectionality between these two communities, and in fact many more as well, is more substantial than you might think.

Join us today for the World Down Syndrome Day edition of the T21 Blog Hop.  Instead of the usual three days that it is open (representing the three copies of Trisomy 21), it will be extended to a full seven days.  Advocacy posts are welcome from all areas of neurodiversity:  whether showing your T21 pride, advocating for a better world for those with developmental delays or asking for once and for all for the world to #stopcombatingme, add your posts for seven days of blogging excellence.




A Fair Shot

Other than my monthly wrap ups and the blog hop, I've been taking a needed blogging hiatus.  Rest assured I will be back to this and my other online efforts at some point. But for now, I'm taking some needed me and family time.

Today however, is World Down Syndrome Day.  I could not let this pass by without notice.

Last year, I wrote about some of the issues that I had with awareness campaigns, those for Down syndrome in particular.  I talked about awareness vs acceptance; marginalization by the medical community; inspirational porn and pedestal ableism; derogatory slang such as the R word; and flat out homicide.  I still stand by each and every one of these; they are real issues faced by people with Down syndrome every day, along with their families, allies and loved ones.

Plenty of socks/wacky socks/odd socks may seem like a fun, silly thing to do, to create awareness, but what does it do really?


For the record, I hate socks, especially these horrible things.  *shudder*

Not a lot...   Outside of keeping your feet warm in what has been a god-awful winter.

Despite the presence of a lot of blue and yellow, including on Toronto's CN Tower and my current fingernail polish, not much will change about the lives with people living with Down syndrome today.  There will be pride, yes... there should always be that.  However, there will still be discrimination at the doctors office, by law enforcement, by teachers, counselors and therapists.  Much of it will be hidden under the guise of "meaning well" or paternalism, doing "what's best" for the person instead of considering individual needs, but it will still be there.  It may be based on old eugenics theories too, a sense of doing what's best for a skewed perception of "the greater good".  There is internalized ableism too within the community, and a lot of elitism even in the disability world towards those with intellectual disabilities.  There will still be a public perception of "lesser" and "sick" as our very language outlines how we really feel. 

As a society, we give a break to parents that murder/attempt to murder their children if they have a disability.  We wreathe these acts in compassion, that somehow the death of a child, of any person at the hands of another is okay if they have needs outside what is considered an able norm.  Instead of increasing community supports and education, we choose instead to buy into the tragedy rhetoric.   This year started out with another death of a person with Down syndrome, this time a 17 month old boy named Lucas Ruiz, who was poisoned not once, but twice by his parents in what they are calling a "mercy killing".  Both parents believed that their child who was born with an extra chromosome, a heart issue and required a feeding tube was "better off dead".   There are still many people who believe that he and people like my son should never have come into being at all, that Down syndrome is a burden to society.

After all the socks and banners and ribbons and awareness, and memoirs and conversations and "teaching moments", why are we still having these discussions?  Why are these things still happening?

What people with Down syndrome need is meaningful inclusion.  Is acceptance.  Equality.  PRIDE. A sense of community and of belonging.  Not socks.  Not pats on the head.  Not superpowers or heavenly qualities.  People with Down syndrome want a fair shot at having a happy life.

You know, the same stuff the rest of us want.  The same things I want for all three of my children, not just the "able" ones.

The same things we all keep writing about, over and over again.

Maybe this year we'll get lucky and someone will take the hint.

Happy World Down Syndrome Day.

Tuesday, March 4, 2014

In the News - February 2014

A collection of news articles, blogs, stories and information about Down syndrome, disability and special needs, from Down Wit Dat's Facebook page.  These are from February 2014.


Legend:
AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
CASE indicates a lawsuit or proceedings
EVENT indicates a scheduled event
IMAGE indicates a graphic, image or comic
LAWS indicates a new piece of legislation
LINKS indicates links or resource materials
PHOTOS indicates photos
POLL indicates an online survey
POST indicates an advocacy statement made through social media
PRESS indicates a press release
QUOTE indicates a meaningful quote
STUDY indicates a study or discovery
THREAD indicates an online discussion thread
VIDEO indicates a video or movie clip
VLOG **NEW** indicates a video blog post


BLOG
Autistic people have the same rights as everyone else
LINKS
LINKS
Autistic Self Advocacy Network
IMAGE
"Introducing PACLA Magazine..."
Challenging Guardianship and Pressing for Supported Decision-Making for Individuals with Disabilities
APPEAL
POST
"Tonight at 10 -Paul needs a new heart, but they wont put him on the organ recipient list -all because he has #autism..."
VLOG

APPEAL
URGENT Action Alert: Contact the White House and Department of Labor

What Does the Research Say About Inclusive Education?
POST
BLOG
Stop… and Rail Against Stigma!
BLOG
Emma Discusses Biting
BLOG
BLOG
BLOG
the aRe word: the lecture
BLOG
The Old Man and The See
BLOG
It's Never "Just A..."
BLOG
It's not about political correctness, it's about not being an asshole
BLOG
Chalk Word Lines of Separation

BLOG
BLOG

What Musicians Can Tell Us About Dyslexia and the Brain
POST
"Experience teaches. And then, after a while, experience numbs," writes Will Saletan..."
IMAGE
"Non-Compliance is not a disorder. It is self-advocacy."

Peel board takes #fixtheformula message to school councils, community

Adult pulls sweater, teeth from 7-year-old student's mouth
BLOG
Calling People the R word
BLOG
Nobody Puts my Baby in a Corner
BLOG
The Ableist Mentality of “No Elevator to Success”
BLOG
I don't respect your (or my) intelligence
BLOGDeconstructing "Stupid"
BLOG
Autism, Empathy, and The R Word
BLOG
“Crazy”
BLOG
Let's Get Something Straight
BLOG
BLOG
This isn't a joking matter.
BLOG
BLOG
Violence in Language: Circling Back to Linguistic Ableism
POST
"The CDSS team supports #PinkShirtDay. Take a stand against bullying!"
POST
"Words mean things. They're pointers. That's the whole reason that we have..."
IMAGE
Privilege
POST
Inclusion: It can be done, and will benefit everyone.
BLOG
Inspiration Porn: Where Gawking, Guilt, and Gratitude Meet
IMAGE
BLOG
Dear Friendly Stranger

BLOG
Making Invisible Disability Visible: Stimming
BLOG

Backish

How Feminism Changed Us as Autism Parents

Sensory Sensitivities:  Understanding Triggers

IMAGE
"These autistic children are our authentic children and we owe them unconditional love."

Person With Down Syndrome ‘Delighted’ To Be Patted On The Head For 245th Time Today
BLOGWho Should Speak for the Disability Community?
BLOG

Inclusion, Communication and Civil Rights
POST"I’m a person with Down’s syndrome. I think if people with disabilities join together..."
BLOG
The Act of Telling

February also saw another edition of the T-21 Blog Hop...


Thanks to all who participated.

The T-21 Blog Hop will take place every month on the 21st, for three days and will continue to feature advocacy posts from across the disability community.


...And that's the news.  Keep the stories and information coming!
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