"Taking on" people with disabilities? A lesson from last week's DWTS

My big girls love dancing. With six little ones, I can tend toward focusing on the littler ones, particularly since they have some special needs that require a little more attention. So...

We have special Dancing With the Stars time on Tuesday nights. 

Yes, I know it airs on Mondays, but we watch it via Hulu Plus, which also allows me to check the interwebs on Tuesday so I know if I'll need to have fast-forward handy, like I did the first week to skip exposing my seven year old daughters to Jason Derulo's performance of Talk Dirty to Me.

{Catchy, yes. Appropriate, no.}

We fell behind last week, so this week found us finishing last week's show on Monday night.
If you're not a DWTS fan, which I haven't been before this season, let me fill you in on the disability element this time around: Amy Purdy is a double amputee, a bronze medalist in snowboarding in the 2014 Paralympic Winter Games in Sochi, an actress, a non-profit founder, and a reality TV star, including a stint on Amazing Grace and her role in this season's DWTS.

She's fantastic. She's open about her story and her amputations, including cracking jokes in Week 2 about the risk of her legs flying off during their swing dance and devoting her Week 3 dance to the way her father supported her through her bout with meningitis, including giving her a kidney as she recovered. I was a little worried, though.

When a person with a disability enters a competition full of people who are defined as "typical" by this world, one of two things tends to happen:

1. the person is there as a filler for ratings/diversity/publicity with no intention of accommodating her in meaningful ways to allow her to compete (which, thankfully, has not happened), or
2. the disability is presented so centrally that the person is secondary, either through explicit focus on the disability or implicit focus by constant discussion of how inspiring she is, bringing the focus to the disability, while the discussion about the other competitors is focused on their dancing, which is what the show is about. 

While the inspiration storyline has definitely been there, the judges have been focusing - especially last week and this week - on Amy's dancing skills.

But.

One comment last week from Erin Andrews made me cringe in a big way, though.

At about 7:45 in the video below, the host Erin asked Mark, Amy's partner, "What kind of pressure was this for you, taking her on?"



I know what she meant. I do. The pro dancer has to choreograph the dance and train the star to do it, and Mark has never done either for a dancer with two prosthetic legs. And I love Erin, dating back to the days when I hung out with her little sister at their house in our hometown of Brandon, Florida.

And?
I love Mark's answer, the way he brings it back to Amy's skills and the competition rather than her disability.

But we can all learn from this, because most of the time in the church, we don't mean to offend. Erin didn't mean to offend. What she did, though, was reduce Amy to an object or at least a lesser competitor. Her words would have been called out if she talked about the pressure of "taking her on" as a partner for any other star competing on the show. But when it's someone with a disability, is it any more acceptable to minimize their personhood?

Nope.

When you interact with people with disabilities at your church, do they feel like equal members in the body of Christ or like a service project you're "taking on" out of pity or obligation or something other than friendship? When you talk with special needs parents, are you thinking about meaningfully including their child or "taking her on" as another task on your to do list? When you consider families like mine in which four of our children were adopted, some with special needs, do you see children we love or diagnoses we took on?

(I sure hope you see the children we love, first and foremost!)

I'm thankful for my role as a special needs ministry leader and a special needs mama. It's not something I take on.

It's something I'm blessed to get to do.

three reasons why this blog has been quiet for the past two years

reason 1: i became a special needs mom

Back when I started this blog, I was a mom and a disability ministry leader and a former special ed teacher... but I had the luxury of choosing the special needs world. When you choose to enter that world, you can also choose to leave. It's more of a visit. Perhaps it's a long-term visit, but it's a visit nonetheless.

For families who live with significant, life-impacting disabilities, they don't just visit the special needs world. It's their permanent residence. 

When we adopted our youngest child, who has cerebral palsy, I became a special needs mom. The change from being a visitor to being a resident of special needs world made me lose my voice for a bit. As a visitor, I knew how I wrote, encouraged, prodded, and exhorted the church to throw open the door to people of all abilities. Something shifted with our Zoe's arrival, and I didn't know where I fit for a time.

Then the shift became more pronounced when our Robbie had his first seizure, ushering us into an unexpected diagnosis of epilepsy and fixing us firmly in special needs world.

I didn't feel like I fit any longer with the special needs ministry leaders whose lives weren't directly affected by disability, because now mine was. But I didn't feel like I fit with the other leaders, because I was about five minutes into the life that they had walked for months or years or decades or more. 

Instead of just sharing what God was doing in our lives, I thought I had to fit one of two molds. I was wrong, but my mistake held my tongue for a while.

reason 2: i was caught up with a different God-led adventure

My husband and I always planned to adopt someday. 

We thought someday would be around 2014ish. 

Someday turned out to be two special needs adoptions much sooner than planned, one child in 2012 and three more in 2013. Our family blog shares a lot more about those stories, but suffice it to say that God's plan was immeasurably better than the one we had.

But the time involved in His glorious plan meant less time spent writing here, a trade-off I'd gladly make all over again.

reason 3: i was grieving 

Christian died one year ago today. 

He was 7.

My two oldest children are 7 this year, and today I'm thinking of them and thinking of him. I'd like to say something mature about this being his heaven-iversary or something that reiterates the post I shared about Christian one year ago. But you know what? I'm going to say something honest instead: I'm mad that I got to see my girls turn 7 but I didn't get to see Christian turn 8. 

Grief is hard.

Somehow, I miss Christian more now than I did last year. 

I miss him every time I do the laundry, washing shirts that used to be his. I miss him every time I help my boys pick out clothes, because they often wear outfits I remember on him. His mama - a dear friend - blessed us with the gift of the clothes I wish her son was wearing instead of mine. 

Sometimes grief just takes the words away for a time. 

Those are three reasons this blog was quiet for a time...

...but they are also three reasons why this blog is back, with 30 posts already scheduled and more to come. I'm even more passionate about special needs ministry than I was when I last posted regularly, because:

1. I'm a special needs mom now, so it's more personal.
2. Our adoptions have made us much more familiar with the special needs of foster and adoptive families in churches around this country.
3. Special needs ministry involves grief sometimes. And we all need each other to walk through that and other hard stuff.

If you're reading this, then you didn't give up on me in the quiet times. Thank you for that.

And thank you for joining me in a conversation worth having. 

six months ago today, this happened

We landed in Uganda, after something like 32 hours of travel.

We packed ourselves and our stuff into a Land Rover that was too small for all of us.

We rode straight to the orphanage to bring three precious and scared little ones out of its gates for good.

Oh, Jesus. I could write a book on all the changes we've seen in them in the past six months. For example, our sweet Patu is 15 pounds heavier, 9 inches taller, and 3 shoe sizes bigger now than she was then.

But as much as they have changed,
as much as they have grown,
as much as they have learned,

I'm the one most changed.
I'm the one most blessed.
I'm the lucky one.

I get to be their mama.

Thankful.

~+~

I know some of you bloggy friends will be at CAFO 2014 in a few weeks.

If you'll be there, please comment and let me know. 

I'd love to meet up in Chicago!

remember that time when our house sold in a day? that was cool.

I meant to post this on March 31, but spring break. So let's just pretend I did...

On January 21, 2012, I posted a blog about our home-selling and adoption-ing plans. In it, I wrote:

So next step, get this house on the market next month. Then, sell it and find another house and buy that one and move. And then get underway with adoption plans.

Please pray for us. In my ideal world, we'll get an acceptable offer the first week our house is on the market and have time before closing to find the perfect-for-us home to buy so that the whole process will be as brief and painless as possible and we can move full speed ahead with the adoption plans. I know that's not the most likely scenario in the current housing market, so you can either pray that everything will go according to my ideal scenario or that God will sustain us through the different scenario He has in store.

But then on January 28, 2012, we found out about Zoe. We agreed to pray. We expected to say no. Nothing about it made sense in our plans: the timing, the uncertainty of her health, anything else. One day after we were contacted about Zoe, I told my friend Heather, "We know this just wouldn't be the right move for us."

But God took our plans of saying no and gave us our yes instead.

the first picture we have of her

Adding another child to the mix, especially one whose health and future had a lot of unknowns, made us even more hopeful about getting our house on the market and moving in a short window of time. All the unplanned adoption stuff - like fast-tracking a home study and all that jazz - meant we didn't get the house on the market in February like we had hoped.

I went on the market on the night of March 30th. And then...

And that post back on January 21, 2012? My dear friend left this comment on it.

Goosebumps, y'all.

i just have to take a moment to brag on my mama

She was born on the day WWII ended (V-J day, to be precise).

I hope she doesn't kill me for sharing that.

I think it's worth noting, though, because she was once a little girl who moved all over as a military brat but who considers her roots to be in New Orleans and Mississippi, a little girl who never imagined back then that her grandchildren would come in as many hues as they do.

We chose to say yes to adoption, which in our case meant saying yes to a multi-cultural family. 

My mom didn't really have a say in the matter, but you'd never know it. 

Considering I'm her baby, it's been a while since she's been in the mode of so many little ones. And she was quick to point out that she had three, not six, and none of us three were as close in age as my little ones are.

Nevermind that, though.

She embraced the crazy.

We love you, Mom. Thanks for filling spring break with wonderful memories for all of us.