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.

27 Comments on “Monday Musings: Online Relationships, Legislative Advocacy, and Civil Rights”

  1. lclilienthal says:

    Jisun, in the short year (or maybe it’s a little over a year?) since LP’s birth, you have become one of my most sought-ought voices on advocacy. I’m really intrigued with your idea and I wonder how that works on the national level, given that laws and policies vary from state to state and community to community. It would be really interesting to hear from a national human rights advocate who could weigh in.

    I’m also really heartened to hear that NDSS is doing a good job with legislative advocacy. Since C’s birth, none of the nationals has really broken through with me as organizations who are or can impact my son in my community – so I have kept my support at the local level.

    Thank you, and I’m so glad you were able to have that experience and that you shared it with us! xo

    • jisun says:

      Lisa, I can’t tell you how much that means to me! I’ve thought about the state v federal issue as well, wondering how the NAACP does it. So much to learn!

      I think there are a lot of people who feel as you do about the national scene, and end up being local. And then I hear about people on the flip side, unhappy with their local efforts, so they go national. I guess we need it all!

  2. Can I just cut and paste this onto Whoopsie Piggle (I’ll change the names to match those of my kids and baby daddy) and say here’s my experience last week? Because you write pretty much everything I want to write about the NDSS Buddy Walk/legislative meet-and-greet.

    And, yes, I found you to be just who I thought you were too.


    • jisun says:

      Ha! Yes! Meeting online and then in person is so funny, isn’t it? I saw you and thought, “Of course that is how Holly is!” Made total sense! xo

  3. So glad you got to meet Patti and some of the others you’ve been an online support to. I think you know where I stand on the idea of needing some kind of “Justice League”…..

    • jisun says:

      I know it! This idea won’t leave me! I really do want to know why it doesn’t already exist. Not enough resource? Not enough consensus? Hm….

  4. I learn so much about your community from reading your blog. I hope that one day I can say my community too, we belong, we just haven’t gotten there yet. I have a rock solid communnity of mamas I’ve know for years through babywearing, and I’m finding it hard to connect the same way with other mamas with children who have DS. I’m kind of just… giving it time.

    i’ve written publicly about both my children from birth, and I kind of believe something I read on dooce once, that babies stories belong to their mamas. I have met quite a few pwople since Cop was born, and making connections with new DS mamas or mamas who just got their prenatal diagnosis has felt ike a really heavy but important thing, and it’s something that makes me want to keep writing and sharing.

    • jisun says:

      Drea! I’ve only just connected the dots! Why do you think it is proving hard to connect with the DS community mamas? I have to say, one thing that was hard and wonderful at the same time was how darned different we all were. So different than connecting through an interest or lifestyle choice. Maybe because of that, I feel so strongly about my DS mama friends, because through the connection we have with our children’s diagnoses, I’ve gained some friends who have really challenged my thinking. About everything!

      Well. I firmly believe in the law of attraction, and look at us. Both babywearing, knitting mamas. I’m already jealous of some of the wraps I’m seeing on your blog pics!

  5. TUC says:

    Thanks for sharing all this Jisun. Lots of good stuff. And you are right, we need an org/group that focuses on legal advocacy issues.

  6. says:

    Awesome. What about a cross disability fight for the legal/civil rights??? After all while I am fighting for my sons Civil rights to be included, etc. I am hoping others can “stand on our shoulders” DS or another “disability”.

    • jisun says:

      I’ve thought of this, and wonder, is it the divide between physical disability and intellectual disability that prevents a unified force from forming? Still have to do homework on this, I’m such a newbie, maybe there is a reason such an org hasn’t formed already?

    • wheeler55 says:

      Actually, there is quite a lot of cross disability advocacy going on at various levels, even though a lot of it isn’t very visible. For example, DREDF (Disability Rights Education and Defense Fund) here in Berkeley does a lot of advocacy and legal intervention on behalf of both people with intellectual disabilities and physical/mobility disabilities.

      • jisun says:

        But why is it not visible? I know it is out there, but it seems like it happens in bits and pieces, am I wrong? I suppose I’m wondering why there was no legal advocacy, for instance, in the Saylor case. If it had happened early on, I truly believe that the outcome would have been very different. I get the sense that the family simply didn’t know where to turn, and neither did our orgs at first.

        • wheeler55 says:

          I agree with you 100%. The legal work and advocacy should be more publicized and out in the open. For what it’s worth, the work of DREDF is publicized. Unfortunately, this publicity is primarily in disability related publications such as, New Mobility magazine.

          In the Saylor case, I also agree that the tragedy that happened when have been avoided if the police would have been better trained to handle people with intellectual disabilities. This entire incident was a legal travesty and gross justice. Those crops should have not only been fired immediately, but charged with murder.

          • jisun says:

            Yes, I have found that mainstream stuff on disability is heavily inspiration oriented. I scratched my head on this until I read more, dug more deeply into what disabled advocates *actually* had to say.

            I go back and forth on whether training would have helped. The deputies actually sent his aide away after she asked to intercede and help Ethan Saylor calm down. That, to me, is conscious and willful disregard for the most very basic training that all police should have. Absolutely agree that they should have been fired at a minimum, yet they are all the back on their jobs. I just can’t swallow that; it seems wrong.

  7. Yes, yes YES! The time is here and now. Sharing your post with Michael Bailey, President of the board of the National Disability Rights Network, and with Angela Jarvis-Holland, Executive Director of the Northwest Down Syndrome Association, who puts on an annual cross-disability conference in Portland, OR called All Born In.

    • jisun says:

      Thank you! Yes, the time should have been yesterday, I sometimes think. See,now, I didn’t even know about that conference. There is so much, rich, amazing stuff already going on, I must learn more!

  8. 1) Your awesome. Thanks for sharing you and all of this with us.
    2) – as you may know, The Road is giving a class about social networking as part of the 321 eConference. May I quote you/this blog?

  9. I vote for Down syndrome Justice League ASAP :)

  10. says:

    I go to All Born In… the Northwest Down Syndrome Association conference…it’s great. Maybe i will meet y’all there.

  11. wheeler55 says:

    Thank you very much for talking about the numerous obstacles the government throws in our path, when we try to work or pursue a career. The faster we can eliminate these obstacles, the faster people with disabilities can compete in society.

    The more people are made aware of this unjust situation, the better, because most people really don’t understand how bad the situation is. Writing such as yours helps eliminate the ignorance that causes so many people to thoughtlessly complain about “those people” who wish to sponge off of their labors by living on government benefits.

    One of the major reasons I never seriously pursued a career or vocation is because I always knew that just as soon as I started earning money, Uncle Sam would start taking away my attendant care, health care benefits, and other things that I needed for my survival. This punishment by the government is a huge disincentive for any person with a disability to work.

    • jisun says:

      I honestly just cannot have a conversation about entitlement benefits with anyone in the general public any longer. The mainstream disconnect between what the neo-conservative agenda has painted, versus the reality, is just too wide. Not that I am not trying to be part of lessening that disconnect, but it sure does make me pull my hair out to talk about it outside of certain communities.

      • wheeler55 says:

        I totally understand where you’re coming from in these feelings. The average person is so brainwashed to believe the GOP party line that we are “takers” and “parasites”, that trying to convince them about what the truth is about entitlement programs is like banging your head against a wall.

        In any event, I still thank you for your advocacy.

  12. Lisa says:

    Sounds like Disability Rights CA but only for Down Syndrome. That’s basically what DRC does for people with disabilities in general.

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