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.

NDSS Buddy Walk on Washington: We Made It!

A while back, the National Down Syndrome Society (NDSS) contacted me and offered me a scholarship to attend their legislative advocacy conference.  Never one to scoff at a chance to take a free trip do good, I immediately said yes.  Actually, the offer resulted in a bit of hand wringing on my part, because try as I might, I couldn’t figure out why they’d asked me.  It seems like there are so many other amazing advocates out there, I felt a bit like a fraud.  All I do is write on this blog, after all.  As much as I eschew the idea that people have to have “expertise” to be advocates, I have a hard time applying that philosophy to myself.  But that’s for another post.

Neither of us were very pleased to be on the subway at 6:00am.

Neither of us were very pleased to be on the subway at 6:00am.

I woke up at an ungodly hour this morning, scooped up LP while still in his pajamas, and left sunny California for Washington D.C.  A few items and musings of note from our travel day…

  1. When you travel alone with a baby, people assume that you are a first time parent.  I’m very pleased to tell you that I now know to start rice cereal for babies who don’t sleep, and that I shouldn’t be afraid to put LP in daycare.  I will also be sure to cherish every moment I have with him before I start having more kids.  Wink, wink.
  2. I have now taken a shower, two days in a row.  And no one was opening the curtain to tell me about a fight, nor was there a baby screaming over the monitor.  *cue Handel’s Messiah*  On a related note, is it possible for your ears to go through noise withdrawal?  Since being away from Mouse and Chipmunk for the whole day, I swear my ears are hearing phantom sister fights and breaking noises.  It is like my ear drums are stressed out from sudden disuse.
  3. During dinner tonight in the hotel restaurant, our server was particularly enamored with LP.  Not in the fake, I’m-pretending-too-hard kind of way, mind you.  She really liked him.  I saw her peeking at him from the kitchen and telling her fellow server how much she liked him.  And if that didn’t tickle my heart enough… She asked me how old he was and if he is walking yet, but before I could feel defensive, she told me about her nephew who walked at 2.5 years and talked at 3 years old.  She didn’t say it in a way that was sad or awkward, just sharing.  We chuckled and both agreed that some people get too caught up in the numbers game.  And I loved that.
  4. I’ve been thinking about online relationships today.  I have a number of mama friends I’m going to meet for the first time in person at this conference.  I am beyond excited, as these moms have been there for me, shaped me, and humbled me over the past year in very profound ways.  Plus, I really like them, they are nifty people.  I’ve been wondering—how much can one know someone from a purely online relationship?  I’ve got several, and I sure as heck feel like I know them pretty well.  How will things change after meeting in person?  Will they change at all?  Perhaps the topic of a future post…
  5. Lastly, hotel beds.  They rock.  There are no Lego pieces tangled up in the sheets.  Your pillows haven’t been stolen to make a fort.  There are no piles of stuffed animals that are supposed to be zoo residents (your bed is the zoo pen, duh).  Best of all, it is mine.  All.  Mine.  Bwahahaha!
My little hotel "helper", hard at work.

My little hotel “helper”, hard at work.

Not all that pleased at dinner.  Mommy, on the other hand, was very pleased with her champagne.

Not all that pleased at dinner. Mommy, however, was very pleased with her champagne.


Learning a new sign: Please.  As in, "Please let me throw the remote control off the bed approximately 245,657 times in a row."

Learning a new sign: Please. As in, “Please let me throw the remote control off the bed approximately 245,657 times in a row.”

So that’s what we did today.  We have officially begun LP’s first trip to Capitol Hill.  Hopefully the first of many times he will put on his advocacy shoes.  Or booties.  Or socks, because I forgot his booties.  Bad mommy.