Disabled? Differently Abled? A Fun Semantic Game?

At a 2015 conference for Nazarene leaders, I attended a workshop aimed at preparing churches to be better equipped at welcoming families and children with special needs.  Being both a pastor and a parent of a child with Autism and a rare genetic abnormality, the workshop piqued my interest.  Maybe it is the borderline cynic in me, but I left that workshop intensely frustrated.

The three presenters were counseling professionals with the additional perspective of being moms to special needs children.  From the beginning, I was reminded that “Special Needs” is a large umbrella.  Two presenters have sons with ADHD and the third mom defined her son as having “high-functioning Autism.”  I am not among those who would say ADHD isn’t a real thing, or that high-functioning Autism is code for “severe introvert.”  Both are real, both are challenging.  But with all due respect, the presenters did not speak for me.  Their anecdotal experiences are just that—anecdotes.  And I don’t wish to minimize their experiences, but someone should have told them they see “special needs” through a very narrow and rosy lens.

During the workshop, I heard statements like, “They’re not disabled, they’re ‘differently abled’.”  “Our God is too creative to make all normal kids.  And what is ‘Normal’ anyway?”  “God doesn’t make cookie cutters.”  “There is nothing wrong.  They’re not broken.” 

Speak for yourself.

I will be the first to say that a diagnosis of Autism or ADHD does not necessarily imply "disabled."  Again, “special needs” is a large umbrella.  I will also give the benefit of the doubt to these moms, that their hearts are right, and they were doing their best to help families and churches.  However, I can’t help but think that their comments are not only narrow, they also bear unintended theological implications.  

It’s easy to say your kid isn’t broken, just “differently abled,” when he is learning violin and building masterpiece architecture out of Legos, but most kids with an Autism diagnosis are not “savants.”  “Not disabled, just differently-abled,” is not only unrealistic, it stands in direct contradiction to the many parents I have met who describe their children as severely disabled.  For me, when my son was 6 and his then 3-year-old sister was far more advanced with fine motor skills, I simply can’t agree that he is just “differently abled.”  Or when his younger brother was 3 and could use a spoon better than he could at the age of 8, to say “there’s nothing wrong with him” is not the reality. Even now at 12, he still struggles with normal everyday tasks most 7th graders take for granted.  I have to admit that while I wouldn’t trade him for the world, I would sell a vital organ for him to fall within the range of “normal.”  The difference between my son and a neurotypical peer is nine genes.  That’s not normal.  You have no idea how many nights I pray that God would give him those missing genes.

Many kids with mid- to low-functioning Autism—to say nothing of the wide gamut of other “special needs”—are, in many ways, very broken.  Try telling the parents of a non-verbal child—parents who will never hear “I love you”—that God is too creative to make all normal, “cookie-cutter” kids.  Try telling the parents of a child bound to a wheelchair for the rest of her life “She’s not disabled, she’s differently-abled.”  Try telling the parents of an adult child who they are leaving at a group home for the first time, “There is nothing wrong with him, he’s not broken.”  Try telling any of this to an overextended mom whose weeks are consumed with therapies, fights with a school district, or visits to one of the myriad of medical specialists she hopes the health insurance plan will cover.

This thinking leaves us with some very uncomfortable theological implications as well.  In the New Testament, part of Jesus’ ministry included healing the sick, blind, mute, and crippled.  John 9 is my go-to case study to talk about my own son; it is where Jesus meets a man who was born blind.  Perhaps some well-intentioned first-century Jewish mother told this poor child’s mother, “Yahweh is too creative to make all kids seeing; he’s just ‘differently abled.’”  Jesus charitably disagrees.  His response was to heal him of his blindness, restoring his sight.  If God is too creative to make all “normal” kids, what right does Jesus have giving sight to the blind?  Or if a lame man was born lame, does Jesus have the right to give him working legs?  Why would the divine incarnate Son step in and undo what the eternal Father wanted done in the first place?  And why all the promises that in the world to come, God will wipe away every tear and heal every sickness and disease?  Is “Special Needs” not included in the promise? 

Jesus, throughout the gospels, routinely noticed people’s problems, but he did not brush them aside with hollow phrases like, “Well, he’s just differently-abled. The Godhead is too creative to make all kids ….”  No, for Jesus, blindness, deafness, paralysis, leprosy, and you name it—it is a disability, and there is no shame in calling it what it is.  There may be, however, great shame in minimizing them, or pretending something like “low-functioning Autism” isn’t all that bad anyway. 

What’s more, “There’s nothing wrong with them” is a statement even the presenters didn’t believe.  While saying “God is too creative to make all kids ‘normal,’” they also deliberately took time in their presentation to recommend when pastors should seek professional help for kids and families.  If they’re just “differently abled,” what on earth would they need professional help for?  

I should be clear; these moms are not the enemy.  In fact, I genuinely appreciate what they tried to do.  First, neurotypical children, do not have value and dignity because they fall under some vague definition of “normal.”  At the same time, children who are “disabled,” missing nine genes, and in other ways “abnormal” do not lack value and dignity because they have a diagnosis.  Our value, from the greatest to the least, comes from being created in the image of God, regardless of our level of ability, function, or any other benchmark we use.  

Second, if that is all true, children and adults of all ages and abilities are entitled to know God, grow in grace, and serve in the church in whatever capacity they are able.  Unfortunately, most churches are ill-equipped to do that for the special-needs community, and an already lonely existence for parents like us gets colder when we find out there is no place for our children, who do not lack the image of God in spite of their diagnosis.  These moms only want that for their own children to the same degree I want that for mine.  

We will not get to the place of true welcome by minimizing the experience of families touched by a difficult reality, by coloring “special-needs” in brighter hues, or by speaking in hollow platitudes.  Dignity does not arrive by ignoring reality.  Churches and church leaders need to know just how hard life can be for a special-needs family, how lonely it is to live in these trenches, how desperate we are for genuine fellowship.  Then, churches and leaders need to be willing to do the hard—and I mean hard—work of joining families on their own journey, making it a part of their own.  

What's His Gift?

Whenever we meet new acquaintances, the topic of conversation inevitably turns to our children, which also turns to an explanation of Autism, 15q24, and an entire catalog of other adjectives.  

It gets awkward quickly. People are usually polite and interested but in a hyper-sensitive society they’re unsure what questions are appropriate.  So they dance around the questions they really want to ask until I give them permission and promise I won’t get offended.

People on the spectrum are… well… how would you say it?  “Delayed”?

Is he in, like, a special class or something?

Can he understand what we are saying?

Was it because you gave him shots and stuff?

Will he ever live on his own?

Again, it’s uncomfortable but asking is a form of caring so I try to respond graciously.  But if there’s one question that requires a little more patience on my part it is, “What is his ‘Gift’?”

I don’t think we live in an era where people’s minds automatically drift to the Rain Man when they think of Autism.  But like it or not, that movie seems to have conditioned our society.  The thought goes: Autism comes with a lot of social, emotional, and cognitive baggage, but at least it leaves some stamp of brilliance on the individual.  The notion of a Gift is still perpetuated in the media.  

As I write, ABC airs a medical drama, The Good Doctor, about a brilliant surgeon who has high-functioning Autism.  Dr. Murphy is socially aloof, but he has a Gift.  He can envision the human body in a way the average doctor cannot. Colleagues can overlook some of his interpersonal difficulties because he is uniquely qualified to see things they cannot.  Originally the writers of the show went to great lengths to differentiate between “Autism” and “Savant,” but if you watch from week to week you still get the impression that they are one in the same.  

I highly recommend the movie Temple Grandin. It is a raw biopic about the namesake of the movie, painting a vivid reality of what it’s like to have Autism.  But she has a Gift: because she can think in pictures, she has become a brilliant engineer who streamlined the entire cattle industry.  

Then there is Ben Affleck’s “The Accountant” and by now you know the routine.  A guy struggles to function in polite company, but he has a Gift. He’s brilliant with numbers (and ninja skills too).  One critic painted Affleck’s character as “giving Autistic kids their own superhero.”  

Part of the appeal these stories have on society is that they try to soften the blow of an otherwise bleak reality.  “Special Needs” doesn’t seem so bad if we can rebrand it as “Special Ability,” or “Differently Abled.”  So when people ask of our son, “What is his gift?” what they really want to know is, 

Is he, like, an accomplished pianist?  

Can he do calculus in his head?

He’s probably fluent in Mandarin.

Has he memorized “War and Peace”?

I bet he has a photographic memory, or something like that.

The question is innocent. Those who ask are not being unkind, they simply reveal their social conditioning.  At the risk of being naïve, I believe most people ask because they genuinely care, so I have to force myself not to answer, “What is his Gift? Well, on any given day he’s got a 50-50 shot at getting his pants on the right way—does that count?”  

In fairness, there are things my son is good at.  He’s charming and has a great sense of humor.  He has enormous confidence on a bicycle and is incredibly friendly.  He particularly enjoys manual labor.  But a savant he is not.  Society is conditioned to believe that in spite of his difficulties, there is latent brilliance somewhere beneath the disability.  

The most obvious problem with that understanding is it simply isn’t true, not for our son nor for the majority of children and adults who live with a similar disability.  What makes a story like Rain Man, The Good Doctor, Temple Grandin and The Accountant compelling is that they are outliers.  They may give the layperson a sense of relief on our behalf, but for the families who live Autism and special-needs day to day, it simply isn’t the reality.  

But there is a second problem.  Asking about a child’s Gift and expecting some gleam of brilliance shining from the darkness of disability reveals that deep down, we still ascribe value and dignity to a human being solely on what they can contribute to society.  The unspoken philosophy seemingly embedded in our culture suggests that maybe our kids are weird but the discomfort they impose on society is tolerated so long as they have some superhuman ability that makes them worthy citizens of humanity.  Certainly only a handful of people believe that and even fewer would say it out loud, but like it or not, that is the governing, albeit unspoken, philosophy in our culture.  

I am Christian.  In Christian theology, value and dignity are assigned at the beginning, not later when some “Gift” is discovered and honed.  The worth of a human being was pronounced when God said, “Let us make man in our own image,” and he stamped that image on the first human couple.  When there were no other humans around to affirm their worth, and when the first couple had absolutely nothing to contribute that could earn God’s respect, God gave his nod of approval anyway.  Perhaps one could even say God bestowed worth and dignity in spite of human inability to earn them through some “gift.”

So God created man in his own image,

In the image of God he created him,

Male and female, he created them

Genesis 1:27

I don’t believe many people in our son’s life are waiting to endow him with value and dignity until they can recognize some superhuman feat of cognitive ability.  But a question that presumes some “gift” (and the slight disappointment at discovering there isn’t one) reveals a cultural conditioning, even if it lies dormant beneath the surface.

My dad was once asked, after I received my Master’s degree, if he was proud of my achievement.  His answer was, “I’m proud of all my kids.”  That may seem like classic question-dodging, but “I’m proud of all my kids” was his way of saying that none of his four children needed to do anything impressive or display some “Gift” before we could earn his pride.  My dad very well may be impressed, but he wouldn’t bestow honor and dignity to us as a result of our accomplishments.  We are his kids, and in his mind, that’s all that matters.  Any perceived achievement or “Gift” is simply a bonus.

I’m proud of my son. He can’t tie a shoe.  He can’t use a spoon.  He can’t do advanced arithmetic.  On any given day he has a 50-50 chance of getting his pants on the right way.  He reads at a 2^nd grade level and has a temper that would make a drunken Irishman seem like a cub scout.  He doesn’t have a Gift.  But his value, dignity, and worth as a human being is not dependent on one.  He’s my kid, and like his siblings, he is given a nod of approval from the God whose image he bears, and that’s all that matters to me.  

Not The Son I Expected

Every parent has idealized visions of what their unborn children will be like.  In our very first Lamaze class with our first child, the group was asked what we were most excited about, thinking of our children.  Dads who were expecting boys answered predictably enough: 

I can’t wait to take him on the lake and teach him how to fish

It’ll be fun to have him help me change the spark plugs in the car

I'm looking forward to having someone to throw the ball around the yard with.  

Mothers were equally predictable with their expected daughters: shopping together, painting nails together, baking cupcakes together.  And of course dads with daughters weren’t too proud to sit down and drink pretend tea with her Barbies, and mothers would welcome the opportunity to hunt for toads with their little boys.  

In all these, there is a bit of projection.  We long to see ourselves, in some way, in our children.  Only real jerks would commandeer their children’s childhood in order to fashion their offspring in exactly the same mold from which they themselves were cast.  But it isn’t wrong to see a bit of ourselves in our children. Certainly they will never fully live up to our idealized vision of them but even so, at the very least they are likely to fulfill at least some of it.  And that is what makes parenthood so fun.  When I, as a musician, see my kid learn the piano, it’s somewhat fulfilling.  It’s the same feeling I felt when my 2-year old drilled a line-drive off a tee the first time he ever held a bat.  It’s the same feeling a computer geek feels when his kid learns to hack.  Or fish, or change spark plugs, or hunt, or….

I remember the first time I cried.  About a week after my son got his diagnosis, I was doing Christmas shopping at a toy store.  I meandered up and down the aisles looking for toys and games appropriate for pre-schoolers when I came to the sporting-goods section.  There they were, in full array: baseball gloves.  I picked it up, put it on, gave it a squeeze, and then came the tears.  I am a baseball guy; it is what I breathe.  With a diagnosis like Autism, and somewhat low on the spectrum, what were the chances he would ever be able to put that glove on and throw a ball around in the yard?

Every parent has idealized visions of what their unborn children will be like.  I had visions of me and my two boys trying to out-throw one another in a triangle with a baseball.  I had visions of my sons perhaps playing baseball on the same team — they are close enough in age.  This was my childhood.  My dad and brother and I played baseball, watched baseball, talked baseball.  The three of us tried to out-throw one another in the side yard.  We even invented a baseball game that everyone in the neighborhood played: The Mini-Bat-Major-League-Baseball (MBMLB, for short) where we used those 15-inch bats and a small Nerf ball.  Still to this day, one of my dad’s greatest memories is when he got to play on the same infield as me and my brother in a church softball game.  One of my greatest memories too.  He played first, and my brother and I shared the middle infield.  I had visions of possibly sharing with my two sons what my dad shared with me and my brother.

Every one of those idealized visions shattered in the sporting-goods section of a toy store, like a bat shatters after hitting a long out to the warning track.  I could no longer envision us playing sports together, let alone baseball.  

I imagine the ancient Jewish patriarch, Isaac, felt something similar when he considered his son, Jacob.  Isaac was a man’s man with twin boys; a rugged outdoorsman who had a love for the wild.  I imagine him as a kind of frontier-man who would build a log cabin with his bare hands, whose love for venison was trumped only by the thrill of the chase.  I also imagine he and his wife sharing a Lamaze class together and being asked what he was most excited about, thinking of his yet unborn twin boys.  I can’t wait to take them out into the woods and teach them how to shoot an arrow!

Fortunately for Isaac, he had one son who fulfilled his idealized vision: Esau.  Esau was a man’s man, cut from the same block of wood as his dad.  Twin brother Jacob, however, was not.  He would rather putter around the house with his mom, learning to cook.  While dad and Esau were out shooting game, Jacob was at home perfecting his stew recipe.  I imagine that at some point, Isaac had his toy-store moment of weeping, perhaps holding a bow in his hand knowing his son Jacob would never care to brandish it.  Something tells me Isaac never came to accept who Jacob actually was, always longing for who Isaac wanted him to be.

Isaac always seemed to resent Jacob for not being the “wild-at-heart” outdoorsman that Esau was, and Jacob seemed to resent his dad for trying to impose a lifestyle on him that he didn’t want.  It was a tension and resentment that was never resolved.  

I don’t want to be Isaac in this story, resenting my son for who he can never be.  And I don’t want Matthew being Jacob in this story, resenting his dad for not appreciating who he actually is.

Here is what I learned, I think.  Weeping in a toy store at the sight of a baseball glove is okay.  But I do not have to stay in that aisle and continue to weep.  He’ll never play baseball, and while part of that bothers me, it doesn’t own me.

I have idealized visions of who my son would be.  It hasn’t worked out the way I thought it would.  I have two very different sons (and a third who is completely different from his brothers!).  My oldest son is almost a carbon copy of me: He loves baseball.  He also loves music.  He hates country music because it isn’t music.  He loves playing practical jokes, drawing, and MarioKart.  But that’s not who Matthew is.  Matthew would rather sit in a lonely corner and spin the wheels of a toy car, or water the flowers in the garden.  He would rather go for walks and bike rides.  He would rather do quite literally anything than arts or crafts.

What I have learned is that, like Isaac and his twin boys, I want to relate well to all of my kids.  Certainly that is easy to do when the child likes all the same things I like.  But with Matthew, for whom this is not the case, I can either resent him for not being like me, or I can try hard to relate to him on his own terms; to relate to him according to the things he likes; to sacrifice my idealized vision of who I’d like him to be, and let him be himself.  

I have learned to roll cars back and forth on the couch ad nauseam because that is what he likes to do.  I have had to be comfortable with giving him free reign of the hose to feed the flowers.  I have often given up my right to watch the Tigers on TV because he would rather watch Dora the Explorer.  When he was first born, I wasn’t yet a runner, and couldn’t envision letting him be my pace guy on his bike while I struggled to keep up for six miles, yet today, that very thing is one of our favorite activities together.   

Matthew is not the son I expected.  I envisioned another son carved in my image.  That was not to be the case.  But he has taught me a few things.  I can relate with him and love him for who he is instead of grieving him for who he isn’t.  Certainly he is not the son I expected, but he is the son I needed.