Tuesday, July 18, 2017

Disability Literacy

Dear Jules,

I'm going to change tacks for a second and think about disability; I'm teaching a class about neurodiversity, which is a fancy way to say that everyone's brain is different, and we should celebrate that.  What we as a society call "disability" just means that our brains work in different ways: if you're blind or deaf or have Down Syndrome or autism, different centers of your brain will process, well, differently.

In my class, I will have my students first think about their own "disability literacy," or their practices of "reading" disability.  How do we learn how to respond to disability?  We might feel uncomfortable, or look away, or not know what to say, or even tell a new parent "I'm sorry" upon hearing of a diagnosis.  I would have done all of these things before I had you, and before I became privileged to be a member of an amazing disability advocacy community.

I've had this horrendous headache for a week now (sinuses, as you know, are the pitts), so I took a break to watch an episode of a show I'm teaching for my class, Switched at Birth.  This ABC Family show examines stereotypes around the deaf community through a soap opera-type plot: a deaf girl and a hearing girl are, literally, "switched at birth."  The new families must then come to terms with their new daughters and their extended communities, including the deaf community.  The show isn't perfect, but I'll be showing my class one episode done entirely in ASL--it forces hearing people to be the outsiders, to read the captions, to be privy to a different way of communicating.

So today I'm watching an episode and (spoiler alert) learned that one of the minor characters' ex-girlfriends is, in soap opera fashion, pregnant.  Then, at the end of the one episode I was going to limit myself to, the girl, in tears, reveals to Daphne, the deaf character, that she took a genetic test and that the baby...has Down Syndrome.

And the screen fades to black.

I was really, really upset by the end of this episode.  I mean, why not just add the sound effects:  duh...duh...DUH!  It felt like when you find out someone has died, or someone is cheating.

But I kept watching, and I continue to be impressed by what this show is doing.  In the next episode, when the pair thinks about getting an abortion ("it often destroys marriages," the young man says), the writers have Daphne talk to her brother, the baby's father, about the fact that she, too, was born "different."
"Well, that's not the same thing," her brother argues adamantly.  "You're deaf, you don't have Down Syndrome."
The point she then makes is that disability is just a social construct, and that deafness, Down Syndrome, or anything outside the "norm" require adjustment, but they enrich our world.

Still a bit cheesy, but then they added this episode to the mix:

I'm so happy the writers decided to add this story to this already progressive show: to showcase this young couple's struggle, show some of their challenges, and ultimately reach a wide viewing audience with the message that neurodiversity is a beautiful thing and that, as we all keep saying, our kids are more alike than different.

I think I will show some of these clips to my students next semester.  For all that the media often gives us a distorted sense of disability ("despite all odds, this kid graduated high school" or "can you believe it?  This person is an athlete") and, even worse, stresses pity over acceptance, this show is, for the most part, doing it right.

Sunday, July 16, 2017

About Medicaid

Dear Jules,

Today I want you to have something that I'm writing for our senators and for the local newspaper.  It's about the benefits that you and your friends receive: benefits that could be taken away in new proposed health care legislation.  I want you to have this for a number of reasons: to see how hard our community fights for you and your friends, and to remember the other kids (and their parents) on this journey with us.  So, without further ado, here it is.

I experienced a myriad of emotions when my little girl was born: joy, relief, and fear.  Julia has Down Syndrome and, at that time, I had no idea what challenges or costs it would entail.  Thankfully, I learned quickly about the support system of other parents who have children with disabilities--there are over 200 families in the lowcountry who have kids with Down Syndrome.  They told me about a South Carolina Medicaid benefit, called TEFRA (Tax Equity and Fiscal Responsibility Act).  TEFRA provides Medicaid to children who would otherwise not qualify, but whose medical and social needs can be prohibitively expensive.

When I was growing up, I heard stereotypes about people on Medicaid being “lazy” and “scamming the system.”  I was taught that, if you worked hard enough, you wouldn’t have to “rely” on the government.  Yet Medicaid, in the form of TEFRA, has enabled us to take Julia to three therapies a week (speech, occupational, and physical therapies) and pay for numerous doctor visits due to her ear infections, constant strep throat, Celiac disease, and generally low immune system.  “Lots of kids get sick,” you might think, but the difference here is that our kids, kids with disabilities, will have limited resources when they are older.  If we didn’t have TEFRA, we might still do all of these therapies, but there is no way we could save for Julia’s future; paradoxically, the fewer procedures and therapies she gets, the more beholden she will be to the state and federal governments later in life.

I’m really thankful to South Carolina for providing this benefit and allowing us to keep working, saving, and making Julia’s future as bright as it can be.  With the permission of my friends, I wanted to share some of their stories, too. 

This is Jude.  According to his mother, Gini Nichols, Jude receives therapy 4 times weekly. As is the case with most policies, including mine, insurance covers 30 visits a year, meaning they would exhaust this in about 3 months. According to Gini, “TEFRA also covered open heart surgery, multiple hospital stays, and continued specialist visits.”

This is the case for most of our kids, including Mae.  Her mother, Jaime Thomas Nettles, adds that “Research shows that children with Down Syndrome thrive in the community by early intervention [our children also receive this benefit until they turn three]…She deserves to be a working thriving member of society just like everyone else.”
According to Jill Griffith, mother of Parker, this would also cost our state families with valuable skills (I myself teach at the College of Charleston, and my husband is an IT director at MUSC). She writes that, “after multiple surgeries, 4 therapies a week, and possibly an upcoming eye surgery, a significant portion of our household income would be tied to Parker's medical expenses without TEFRA.”

Denise Brewer Brown has not one, but two children with special needs.  According to Denise, “Jack receives PT twice a week, OT, EI [early intervention] and Speech. “He has a helmet and special shoes to help walking.  Evan receives PT, OT and EI. “That's not including specialist appointments.” 

Callie, the daughter of Kerry Litten (left), also receives four therapies a week, along with the many services already mentioned.  
One of the stories I’ve been following most closely is that of Daisy, daughter of Holly Nye.  Like many children with Down Syndrome, Daisy also deals with heart conditions.  According to Holly, she “spent the first 9 weeks of her life in various units of MUSC, has many appointments with multiple specialists, PT, OT, and SLT [speech language therapy] weekly, EI biweekly, has had 5 surgeries so far including open heart surgery, among multiple hospital stays.” Like almost all of us, Holly and her husband work full time but would be in debt if it were not for TEFRA.

We all come from different places, have different experiences, different faiths, and different political beliefs, but our stories are unbelievably similar.  We all work hard, we adore our kids, and we want them to be productive members of society.  We all believe that providing them with the services they need (without bankrupting us) will allow for that to happen in future.

Danny Raynor
Asher Ferrell
Jakob Jones

Behr Glocker
Freddie Taylor
Becka Winger

Many of the pictures I was sent were of the babies in our group, like Davis Dawson, right, who has also had a number of medical issues and seemingly lives at MUSC.  But I don’t want to forget that our kids will grow up and have different, no less important, needs. 

They need to integrate into school, like Lily Waddle, left, and services like occupational therapy are essential to that.  Sheyenne Morris, pictured above, graduated from high school due in part to the services she received from the state.  Sheyenne, 21, received services in elementary and high school.  According to her mom, Julie Morris, she would not have made it as far as she has” if the family had not received assistance. “She is a very strong-minded young lady,” Julie writes, and she is “so proud of all [Sheyenne] has accomplished.”
And, as Gene Carpenter, mother of Elizabeth Carpenter, says, Medicaid not only helps individuals and their parents but is also essential to the well-being of siblings, like Elizabeth’s brother Edwin, pictured here.
As Gene writes, Elizabeth “is the success story of Medicaid… Today she is a rising junior at Bishop England High School in completely inclusive classes  and goes to school with her “baby” brother, Edwin.  “Elizabeth,” writes Gene, “is going to make it – she will live independently, she will hold a job. Edwin is the lucky one – his life is rich from his experiences with Elizabeth but his future will not be burdened with the responsibility of full time caregiving because Elizabeth received all the services she needed from Medicaid.”

These are just some of our stories, and this is just the Down Syndrome community.  I also have friends whose children are on the autism spectrum, or have cerebral palsy, or suffer seizures that require constant supervision.  Look at these faces: these children are anything but lazy, and their parents are not only not exploiting Medicaid but are using its benefits to create better lives for both their children and their siblings. 

Many of my friends do not live in South Carolina and do not receive Medicaid.  Kaetlyn Spivey’s mother, Kelly, writes that they moved from Seattle, where they did not receive Medicaid benefits.  When Kelly’s employer asked them to return, Kelly rejected the offer because “this is better for Kaetlyn.  The other side is very very expensive”!

 I want to be clear that we are so very grateful for the assistance you, the taxpayers of South Carolina, have given to us.  Please know that, as you and your legislators prepare to make choices regarding health care reform, these children continue to count on you.

Monday, April 3, 2017


Dear Jules,

Today could have been, well, shitty.  Literally, it was.  You've been in between constipation and diarrhea for a while now, and today was one of those "blowouts."  You'll be glad to know that I'm not going to talk about poop for this entire blog post, although the issue has been consuming my life lately.   The situation could have been rough; I get a call in the middle of teaching to come get you and clean you up--give you a bath.  This, as many working moms know, could have thrown my entire day off the rails.

But I'm blessed in your Daddy, who called me immediately and asked whether he should do it.  I decided to go (I was in office hours at the time), but I'm able to be back at work because of Addison's mommy, who has been taking care of you.  She has been such a godsend; she gets what you need because her little girl also has special needs.  She reads with you, does homework with you, and then Addison is there to play with you and to be your really special friend.

Today, when Ms. Heather drove away with you and Addie in the backseat, I looked at your little smiling heads peeking up over the windowsills and got a lump in my throat.  You both looked so very happy to be with one another, and I knew that, no matter how shitty this day could have been, we are really very blessed.

Let me take a brief detour and tell you the amazing story of how Addie and Ms. Heather came into our lives.  You were about one, and we enrolled you in Kindermusik.  It was a regular class, and I honestly had no idea that Addie had special needs until we met her again, years later, in therapy, and then at Chick Fil-A.  We kept on meeting and, when after school care wasn't working out this year, I called Heather and asked whether she could take care of you.  You and Addie have been thick as thieves ever since, and she even got us to join Miracle League, which has been so inspirational to watch.  You and Addie are both on the Braves- here's a picture of you two together:

As Ms. Heather said, you will have a lot of great friends (and I'm grateful for all of them!), but it's really special to have someone who just "gets you," who doesn't see you as someone who has to be taken care of, who sees you as her equal.

What a blessing.

Friday, January 20, 2017

A Historic Day

Dear Jules,

Today, January 20, 2017, is a historic day, a day filled with much celebration and rejoicing.  People who don't know us might assume it's because our country is inaugurating its 45th president, Donald Trump...but anyone who knows me and the issues important to me knows that cannot be the case.

And yet today we celebrate someone who will (and already has) changed the world: you.  As you turn six, I think about all of the people whose lives and ideologies you have already touched and affected, starting with myself.  When you were born, I knew nothing about Down Syndrome, and I was scared, not sure I was "up to" the job of being your mom.  But you are so awesome, and Down Syndrome, I have learned, is just a part of the amazing person you are.  You've also taught this lesson to Dad (pretty quickly!  you've always been his pride and joy), Nagyi, Grammy, Papa, your Godparents, our friends and colleagues, your friends at all of the schools you've attended...and I think your inclusion and presence in our world will help people think a little bit differently.

So on a day when "difference" isn't what most people are celebrating- when we have to hear a pastor give a sermon about "God's chosen" president- I celebrate the fact that God chose you to be my daughter, to teach me to let go of my need to control everything and see where life will take me.

But since it is inauguration day, here is you watching Obama's 2nd.