More Than Words

On Monday, New Jersey Gov. Chris Christie signed a piece of legislation replacing the term ‘mental retardation’ with ‘intellectual’ or ‘developmental’ disability. He is not the first governor to do so and it is clear he won’t be the last. So what? you may ask.

We made the decision early on to include a section on language in the First Conversation book (page 55) because language is more than the words we speak. It is the stuff we use to think with. And, because people think in language, the language we use always has the potential to affect the way we think about things.

Consider the case of Nick Marcellino, a 14-year-old student from Maryland. Nick’s younger sister, Rosa, has Down syndrome. He knows very well how she feels every time she is referred to as “retarded”, not only by other children, but in her own IEP and other official documentation of the educational system. As a result, he began his campaign, enlisted the help of the media, and eventually convinced the Maryland legislature to change all references to mental retardation in official state language to read ‘intellectual disability’.

And he didn’t stop there.

Nick then took his very personal advocacy effort to Washington in order to remove the term “mentally retarded” from the lexicon of the Federal government as well. Earlier this year, he testified in front of the United States Senate in support of S.2781 – a bill to change references to mental retardation in Federal law to ‘intellectual disability’, and to change references to mentally retarded people to ‘individuals with intellectual disabilities’. The bill, known as Rosa’s Law, was passed by the Senate two weeks ago.  The House will take up its version next month.

In November, Nick, Rosa, and the rest of the family will join us in Milwaukee to accept the 2010 Bethesda Voices Public Policy Award. I can’t wait to meet them.

Changing the words we use challenges us to think differently. It’s about respect. It’s about dignity.  And, at least for Nick Marcellino, it’s about the strength of a family.

David Morstad

Presume Competence

Picture a family in a local restaurant.  The waiter notices that one member of the group is a man with Down syndrome.  He takes orders from each person in turn and then asks, “And what would he like?”  There are curious looks all around the table as the man speaks up, “I can tell you myself.”

The waiter erroneously presumed incompetence.  Disrespectful? Yes.  Socially awkward?  You bet.  But there’s something deeper here – something  that leans squarely in the direction of human value.   

In the past week, two events have focused my attention on this issue.  First, I was approached about contributing to an article on the relationship between elective abortions and prenatal diagnoses of Down syndrome.  Second, I read a piece by the mother of an adult daughter with autism.  Her advice on how to act when meeting people with autism was threefold.  Be nice. Show respect.  Presume competence.  

Though seemingly unrelated, those two events  snapped together for me like puzzle pieces when I read the last two words:  Presume competence.   The book, First Conversation, is full of examples in which friends, medical staff and even church members seem to presume anything but competence (or worthiness) in the future life of a  person with a developmental disability.  Should we be surprised?

Consider this:  The American Journal of Medical Genetics reported as recently as 2005 that 81% of medical students believed they were “not getting any clinical training regarding individuals with intellectual disabilities”.  A year earlier, a survey  of obstetric fellows revealed that nearly half rated their training as “barely adequate or nonexistent”.   Careful not to lay too much blame on the medical community, this is a problem we all own.  Plus, there’s hope.  For proof, see anything by Brian Skotko, physician, researcher and writer.  

In the absence of our voice on their behalf, people with disabilities – on both sides of the birth canal – are at the mercy of ignorance.  Whether waiter, physician, pastor or neighbor,  God has called all of us into  a better First Conversation.  We needn’t wait for a diagnosis either.  We are called to presume far more than mere competence in people with disabilities. We are called to presume immeasurable value. 

David Morstad

Given more than you can handle?

Is God in the business of making mischief in the lives of his people?  I don’t think so, but I’ve heard what some people have to say and, as odd as it sounds, I can see where one could easily be led to that conclusion. I recall some of the melodramatic imagery in the old Edna Massimilla poem: “A meeting was held quite far from Earth. It’s time again for another birth…”  God and the angels are pictured in, apparently, a committee to determine which very special family will be a perfect fit for a child with a disability (Heaven’s Very Special Child).  No disrespect to Edna, but I’m not convinced.

One of our First Conversation writers, Erin Coss, has a more eloquent (if not more realistic and scripturally sound) take.  From page 60:

Then there was the oh so famous saying “The Lord will never give you more than you can handle.” People would quote this to me as though it was scripture. As though I had the personal strength to endure anything. But this was the farthest thing from the truth. What would be revealed to me was that nowhere in scripture is the saying “The Lord will never give you more than you can handle.” On the contrary, we will face many situations that are just unbelievably unbearable, but “I can do everything with the help of Christ who gives me the strength I need.” Philippians 4: 13 (NLT).

Last month, shortly before my daughter delivered her first child, she said to me, “Dad, I think we’re ready.”  I couldn’t help but smile.  “Oh, Sweetheart,” I assured her, “No, you’re not.”  I’m willing to suggest that all parents, regardless of what is revealed on the chromosome maps of their children, are absolutely ‘given more than they can handle’.  In fact, that seems to be a prominent theme that emerges from nearly every parent’s story in the book.   It’s more than we can handle. Yet, right there in the middle of it all, God chooses to reveal himself.  Peace beyond understanding.  Strength beyond reason.  Grace that amazes.  

Thanks for your insight, Erin.

David Morstad

I Am Viable

VIABLE. Capable of living; having the ability to grow, expand, develop; vivid; real.

Why is this significant? As you will be reminded at www.iamviable.com, pregnant women all over the world will be told today that the child they are carrying may not a “viable fetus.” As tragically necessary as clear medical communication (sometimes referred to as an “adverse prenatal diagnosis”) may be, it raises a variety of questions about what really constitutes viability.  As you will read when you visit the site, the issue reaches beyond simply living or dying.  In most cases, the ‘viability’ question is really put forth as a question of the value or quality-of-life potential of a child with a disability.  As in First Conversation, you will meet mothers, fathers, sisters and brothers who have faced real life struggles and provide honest personal reflections that confront the question with great clarity.

The site describes itself in this way:

It is our desire to share with you through this website, stories of hope, stories of how God uses every life to display his character, for within each and every one of us, God has created the capacity for a relationship with him. God also gives us the ability to touch others around us and it is sometimes through those least expected, that God can touch us in the most profound of ways.

More than just a collection of stories, the site also provides the opportunity view a few interesting videos. One in particular may be of interest, especially given the comments on the previous post. “Welcome to Holland”, a poem written and performed by a father, provides a wonderful parental perspective that seems to put the issue of grief in its proper place.

Thank you to Kara, founder and editor of I Am Viable, for this important resource.

David Morstad

A Prayer for Healing

Today I read an article by a mother whose child was recently diagnosed with autism.  In it she wrote, “I pray for a miracle every day.”  While she gives no explanation, we’re left to assume she means a significant change in her son.

I’ve heard an awful lot of people with developmental disabilities pray.  I’ve heard them pray for health, for safety of their mom and dad, for food and friends.  I’ve heard a lot of prayers for forgiveness, and I can even remember one really great petition for a new pair of shoes.  Yet, I don’t remember a single prayer for a higher IQ, or for new and improved genetics.  Why do you suppose that is?  I think it hints that a new paradigm of what does and does not need healing might be in order. 

Is healing needed?  You bet. Consider for a moment all those things related to disability which are indeed tragic – discrimination, inadequate education, poverty, limited health care, reduced independence, social isolation.  All of those things need healing – not just in the lives of people with disabilities, but in our lives as well.  They all put barriers between us and people with disabilities and we want those barriers destroyed.  So did Jesus. 

When Jesus healed people, he put them back with society.  Of course, it would have been nice if all ten lepers had stopped by to say ‘thank you’, but I have a hunch that nine of them were just too anxious to get out there and live life with their family and friends.  After all, Jesus had put them back together.

God knows the difference between those things that make us unique as individuals (like this syndrome or that syndrome) and those things in the world that are truly in need of healing.   He knows that the real barrier is the gulf that sin puts between people, regardless of their abilities. And that is the real healing he stepped forward to accomplish in our lives.

Today, may God heal that which needs healing.

David Morstad

What a Show Off

 I chose the photo myself because I just love it.  I’m referring to the one on Page 47 of First Conversation.  It shows a young child with Down syndrome in a t-shirt that reads:  “When God made me, He was just showing off”

There’s more to the story.   In 2004, the photo was featured in Bethesda’s flagship newsletter,  Messenger.  We received a letter (still in my collection) from one of our readers who was not impressed with the image.  She wrote, “Showing off is a human trait. Some might even consider it a sin.  Why is such a human trait attributed to God? Our God is not one of the Greek and Roman gods who at times were ‘show offs’.”

OK, I admit it.  I hadn’t considered that.  Not even a little. 

Sadly, we live in a world in which people with developmental disabilities are at the mercy of inadequate education, healthcare, housing and employment.  Many are openly discriminated against.  In short, their value as complete human beings, created and redeemed by a loving God, is not universally acknowledged.

Granted, it’s just a t-shirt, but the sentence declares an important truth: The magnificent creative beauty of God’s handiwork is displayed (‘shown off’, if you will) in people with developmental disabilities, just as it is in all of us.  In fact, it affirms exactly what the Psalm writer said about God’s creation of humankind (including those with disabilities):  “You made him a little lower than the heavenly beings and crowned him with glory and honor.  You made him ruler over the works of your hands; you put everything under his feet” (Psalm 8).

God of creative brilliance beyond reason, may You choose to be a ‘show off’ in our lives today!

David Morstad

Welcome to the Conversation

I relate this story in the introduction to the book, but it bears repeating.  Following a presentation on developmental disability ministry to a group of Lutheran seminary students, one young man stayed behind to courageously share what is arguably a common self-assessment. “To be honest,” he confessed, “I feel better prepared to talk to parents whose child has just died than to talk to parents who have just learned their child has a disability.” It was a shockingly blunt observation but such is the strength of emotion that is often tied into the issue. He added, “I simply have no idea how to have that first conversation.” 

So began this project.  You can click on the “About First Conversation” link above to obtain a copy of the book.  I hope you read it and I hope you consider journaling some of your own thoughts as the format of the book suggests.  Also, I’d be honored if you’d consider continuing the conversation here. 

First Conversation offers both highs and lows in the lives of people with disabilities and those who love them.  One observation in the book always catches my attention, perhaps because I know the people involved.  Megan describes her sister Jenny, a young woman with Down syndrome,  in this way:  “She now works at a fast food restaurant, has an iPod and has a boyfriend”.  It may seem like a small thing, but I’ve raised two daughters of my own and it’s hard to imagine a more important (and quintessentially average) trilogy for an early-20-something than a job, iPod and boyfriend.  Would that Jenny could sit in on every pastor’s First Conversation.

David Morstad