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People have been asking for more information about the International Alliance of Writers for Down syndrome (“the T21 Alliance” or “the T21 Writers Alliance” for short). I thought I would write a short post explaining the reasoning behind it’s creation and naming.

Having a wealth of resources, knowledge, opinions and talent lay scattered and uncollected has always been a peeve of mine. With it, there seems to be a constant reinvention of the proverbial wheel. Rather than endeavoring to go farther, to do more in our advocacy and in our writing, rather than sharing what we know in a seamless, easy way – and thus, paving the path for more knowledge acquisition and research, we are asking each other the same questions, passing around the same answers. In some situations, if you don’t know the right person or if you do not have access to the right online forum, you may not ever even get an answer.

Furthermore, I know that in the case of disability and advocacy, there is power in many, a collective whole that agrees on the key issues. Movement and stances may be made through that group of many; vision can be enhanced, clarified and disseminated far more broadly than it could with a few. It’s like the small fishes in the sea joining to form the shape of a whale…then charging.

Having an allied group of writers that can wield our pens keyboards collectively when needed is powerful. A tiny (and perhaps petty) example is the case of Noah’s Dad – should someone like him say in the future that there “was nothing out there”, a professional response from the “International Alliance of Writers for Down Syndrome”  gently saying, “oh really?” – would would speak volumes.

Which brings me to the name part. Coming from my experience in working with disability/advocacy on a professional level, I am well aware that names are very important. “Down Syndrome Bloggers” carries a very different tone than does “The International Alliance of Writers for Down Syndrome” – if we want to be taken seriously, a serious name is critical. A name that says, we are here. We are allied. We are by and for Down syndrome.

With that in mind, I created the main blog page, as well as the facebook group (all links below). Blogging friends Melissa, Rebecca and Megan agreed to champion this cause, and things sort of crawled along to a full and complete stop, first with my family’s Baja trip and then with my full-blown pregnant-related nauseousness coupled with my brilliantly-timed cancer fundraising endeavor. STOP. It went STOP. The whole thing, full and complete, STOP.

I’m feeling (relatively) perky again and want to push this project to get the momentum rolling  – hopefully by October it will be in full swing – right in time for Down syndrome Awareness Month (see note below).

In the meantime and in the interest of full disclosure and transparency, the pieces that I have struggled with include:

to move to WordPress or not? I think that keeping it with Blogger might be the best idea for now. Reason being, more of the Ds Community blogs with Blogger – if someone needs to take this project over from me, there will be more people familiar with the Blogger platform than with WordPress.

Facebook Page: Group or Page? I strongly lean towards the Group page at this point as the official Page is in Timeline and is not community-friendly. The Group page is cumbersome and unwieldy but it has the sense of belonging to all  – and a nice neutral zone where everyone is welcome to express their reviews, posts, articles and other written information as it relates to T21 is conducive to community building.

– Blogs: As we all know, there are thousands of blogs related to Down syndrome. These are often cross-categorized (as in, they touch on subjects other than Down syndrome – like mine does travel/disability or Amy Julia Becker’s does with faith). We want this to be clearly organized – I think the best way at this point is to create an entire site just for the Blogs piece, create rolls and feeds based on 10 categories. This entire Blogs site will be linked to a tab on the T21 Alliance Page. Melissa and I are working together on this – hopefully we’ll be able to have it pulled together in the next month.

What you can do to help:
1. Join the FB Group (links below). While it’s an open group, for some reason you have to receive permission to join. Any member may give permission. If you are a member, please go ahead and add people – and if you are not currently a member, I hope you will be, soon.
2. Edit the document on the Group page (upper right corner, “Files” – click it, then hit “Blogs by Group Members”) and add your blog and the cross-category that you would label your blog. All blogs listed will be going on the main roll.
3. Review the Purpose of the Group. One thing that is so very important in this endeavor is the marriage between honesty and a respectful neutrality. We must be honest to gain the full benefit of the spectrum of our opinions and knowledge-bases. But we are all so very different that at times it can be hard. I think it’s imperative that we keep the end in sight at all times: this is about an allied advocacy, it’s about support by and for Down syndrome. It’s about enjoying writing.  It’s about having fun too, getting to know each other.
4. Reviews and Articles: the more reviews and articles we accumulate on books related to Down syndrome and articles, etc, the more useful the site will be. So, if you have article links, resources, reviews you have written, please send them on to “CONTACT US

Can You Create:

  • Blog Button for sidebars to spread the word
  • Banner (the one I made is off center, formatted incorrectly and it will take me a million years to figure out how to do it right: HELP!)
  • You’re the pro: what else?

ALL IDEAS ARE WELCOME – please help make this a strong and functional Writers Alliance.


Note about Ds Awareness Month: * It’s in October but it should be March, in my opinion, as 3/21 is World Down Syndrome Awareness Day and October is already taken by Breast Cancer Awareness.


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  1. Information being categorized, streamlined and created is sorely needed!!!! Many medical, behavioral and therapeutic areas seem so scattered and disjointed. Outstanding ideas & I am eager to help where I can. Consider guidance from some of the amazing recent creators in our unique community including Gifts and—both were incredible journeys with top notch results that joined many varied input sources, speed and passion. Goooooooood luuuuuuuuuck!!!

    1. Thanks – it would be great to have help. What are you able to help with?
      Gifts and Ds Pregnancy are both great – and are both books. What we are really trying to do is create a site. Also, Kathryn Lynard Soper (the editor and lead for Gifts) is really not active in the Ds community anymore – she’s really turned her prodigious talent to her Mormon writing and community…

      Thanks again!


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