Monday Musings: Online Relationships, Legislative Advocacy, and Civil Rights

He saw snow for the first time...

He saw snow for the first time…

We’re back!  LP saw his first snow, we went to Capitol Hill, and now a bunch of only vaguely related thoughts are pinging through the old noggin.

I’ve been cheating on my husband…

Yep.  I’ve been online dating.  Over the past year, I’ve gotten pretty intimate with oh, maybe 150 or so mommies from across the world.  I’ve messaged with them in the middle of the night, we’ve watched our kids go from little baby blobs to cute little people with blossoming personalities.  Many a night has my husband yawned and given up trying to talk to me because I’m busy with “The Ladies”.  Latke always says “The Ladies” with a grand arm sweeping gesture and a sarcastic face.

It is not just mommies.  I’m resisting the urge to name everyone I met, lest I sound like a complete groupie.  Let’s just say, it was awesome.

As the conference got closer, I couldn’t help but wonder, How would things be in person?  Will I be surprised?  Will they be surprised?

I’m happy to report, I have very good taste in people!  Everyone was… so… them.  Sure, there were some in-real-life discoveries, like my dear friend Jenny, who has an adorable snort-laugh when surprised by something funny.  Aside from that, however, I must say that everyone I met was exactly as I imagined.  Personalities really do shine through even on much-maligned social media, if you engage deeply enough.  It was also a reminder that even though we don’t “see” each other online, they are real interactions, with real impact, on real people.  It was truly gratifying to meet so many people who have impacted me so deeply.  Ya’ll know who you are.  

When you put your kid on the interwebs…

I can’t tell you how many people came up to me last week because they recognized LP from his pictures on this blog.  I’ve actually done quite a bit of soul-searching on the topic of putting images of my children on a public blog, but this past week highlighted how the blog has built so many bridges for us, it feels worth it.

My favorite was when I got to meet Patti Saylor, she found me and a friend at lunch and said something like, “I knew when I saw him, it had to be you!”

So, LP, please don’t hate me for writing a public blog about you.  It has been therapy, community, and advocacy all in one, and I really think that it will have a positive impact on your life.  I hope.

Legislative advocacy in action…

I’ve been plenty critical about the National Down Syndrome Society before, but they do the legislative advocacy right.  I was honored to be side by side with so many amazing advocates.  I can’t thank NDSS enough for giving me the opportunity to attend, and I hope it was the first of many.

I might have also met Diane Feinstein.  No biggie.

The conference started off with an event open only to people who actually have Down syndrome.  I loved it!  Nothing about us, without us.  I knew this was a good sign.

The day of the actual legislative advocacy consisted of over 300 advocates running all around Capitol Hill, meeting with members of Congress.  We talked about the ABLE Act, the need for greater research into the link between Down syndrome and Alzheimer’s, and asked people to join the Congressional Down Syndrome Caucus.

This is important stuff, you guys.  Right now, rules around government health care benefits force many people with disabilities to live in poverty, because they are not allowed more than $2,000 to their name.  If you had to pick between a job and essential health care—I’m talking about things like life-sustaining prescription medication, not just a doctor’s visit here and there—what would you do?  I have a personal connection to Alzheimer’s, and recently read that some researchers theorize that Alzheimer’s is acquired Down syndrome.  Woah.  Don’t we think that this is worth some research dollars?  And I bet you didn’t even know that there was a Congressional Down Syndrome Caucus.  Well, there is, and all the cool kids are joining.

Here’s what I wish though…

I think we need an organization devoted solely to legal and civil rights advocacy for people with Down syndrome.  I think NDSS is doing a great job at the legislative piece, but I was struck this weekend by how much they actually manage to get done for what a small organization they are.  Those people are busy!  And the advocacy that they do, they are good at doing.

Now I know that legal, civil rights advocacy for people with Down syndrome does happen.  It happens at the National Down Syndrome Coalition (NDSC).  It happens at the ARC.  It happens at NDSS as well, and many other cross disability organizations.  I can’t help but wonder, however, if we had it all under one roof.

I’m thinking about how the aftermath of Ethan Saylor’s death could have been different.  Still, there has been no accountability for Saylor’s death, and I don’t know if there ever will be.  What about the little boy who was dragged across the floor by his own school principal?  What about Antonio Martinez, who was pepper sprayed and beaten by police for simply not responding fast enough?  I’m not talking about training here, I’m talking about accountability.  Litigation.  Civil rights.  You shouldn’t get to keep your job after you ignore a caretaker’s warnings and use unreasonable force over the cost of a movie ticket.  What if…?

I’m also thinking about the thousands upon thousands of families across this country who have to hire lawyers to get their kids into an inclusive school setting, something that is rightfully theirs.  Well, what happens if you don’t have the money to hire a lawyer?

I’m thinking about people like Jenny Hatch, who had to fight her own parents in court to be recognized as the adult that she is.  There are many, many more people like Hatch who do not happen to have extra support networks to help them fight for their independence.

Legal advocacy is a specialized beast.  I can’t tell you how many times my discussions in Grassroots Advocacy Land boil down to legal questions.  Just this week, my news feeds have been full of discussions about a woman in Georgia (who has Down syndrome) whose already convicted rapist was granted a new trial.  Sex crimes, disability, the court system, and terrible media reporting make for a tangled web.  

I’m thinking, I’m thinking, I’m thinking…

No medical outreach.  No inspirational stories, no research or legislative agenda.  I’m thinking about a group whose sole purpose was to demand what was legally right and just for people with Down syndrome.  Justice.  I know there are parts and pieces out there, but what if it were all in one place, one unified force?  Media outreach.  Referral hotlines.  Legal resources.  Community organizing.

What do you think?



Read about the ABLE Act here, and find out which House and Senate members have agreed to co-sponsor the act.  If yours isn’t on that list, pick up the phone!  The Garden of My Heart has a great blog post that explains the ABLE Act in simple terms.  The ABLE Act isn’t important just for people with Down syndrome.  It is important for all people with disabilities and for our economy as a whole.

Learn about the Congressional Down Syndrome Caucus here.  Urge your elected officials to join!

Go check out the NDSS legislative agenda, find out how you can get involved.