When everyone is asked to stand in an audience, my mind tells my legs to “stand,” and my hand goes instantly to my controls. I move forward, but the funny thing is I don’t seem to get taller. When I race at top speed down a hill, I reach the bottom and I’m out of breath. Why? I have no idea. I haven’t done anything that would make me breathless and exhausted. Except that I have a brilliant imagination. I don’t say that to brag or consider myself better than others, I just know it’s my only explanation. Jesus is my reason for living, and he gave me an imagination so I don’t fall into despair or self-pity.

My little brother, Kevan also has SMA, and growing up he was my best playmate. We made everything an adventure - the backyard was a baseball diamond, the deck was a barn, the woods were secret headquarters,  the driveway was an ice rink, and ditches were time portals. Our wheelchairs were never just wheelchairs; they were horses, roller skates, skateboards, motorcycles, and sports cars. We could play imaginary basketball games and hockey games, and it was so real to us that we never argued over scores - we saw the same things.

Secure in my imagination, I walked the halls in high school just like everyone else… and conveniently never had to go to gym class. I never tried out for sports because I didn’t really like sports - never crossed my mind that I couldn’t do it. I was in choral ensemble, and whenever our teacher choreographed songs, I matched the movement and rhythm in my chair, all the while imagining my legs and feet obeying my will - I am a fantastic dancer in my own mind! In the mornings, sometimes I let my imagination get me up and do exercises and stretches and make my own cup of tea and go for a jog with the dog, while my actual body lays in bed waiting for mom to get me up.

And it’s an awesome feeling when I can get other people to come into this world with me! A few times, I’ve had people drive my car and park in a regular spot in between two cars, and then say, “Oh! Sorry, I forgot you’re in a wheelchair!” I love that. And for those of you who feel bad because you didn’t think about all the steps into your house being a problem, that’s ok! I don’t mind, really. Because that shows me that you’re playing my game too, and you can see me without my handicap. You can see me for who I really am.

 ”Head and shoulders, knees and toes, knees and toes, knees and toes…” At age three, I sat in Sunday school, singing this silly song to get rid of jitterbugs and wiggle worms, and praise Jesus with my friends. I sang with all my might, while reaching from the top of my head down to my tiny toes, which by that time were encased in plastic shoe insoles to keep my feet flat on the ground and stabilize my wobbly legs. If I didn’t wear them, my ankles would turn, which caused plenty of sprains in the years to come. “Head and shoulders, knees and toes, all for Jesus…”

Spinal Muscular Atrophy, as you can guess from the name, atrophies the muscles surrounding the spine, causing scoliosis. I think I was four or five years old when I was fitted for my first back brace. Very much like a cast, a wet, gooey cloth was wrapped around my torso over and over, then left to dry, before being peeled off and cut into a thick plaster brace that strapped around me with Velcro. It was hot and sweaty and very uncomfortable, sometimes rubbing sores over my ribs, on my legs, and under my arms, but it gave me good posture and better balance for several years.

For the first five years of my life, I was toted around in a twin stroller with my younger brother, Kevan. When I was in kindergarten, I got my first electric wheelchair, which I used for going long distances. It, too, I decorated and made the envy of my classmates, to whom I always gave free rides on the playground during recess…

These are some of my earliest childhood memories.

 Mephibosheth was crippled, and David called him to join his family and eat at his table. He didn’t do this because Mephibosheth was crippled, but because he loved his father. Mephibosheth didn’t get healing in his feet. He spent the rest of his life crippled, but he was loved and cared for. He got to eat and live with a king and experienced first-hand the mercy of God, who provided an awesome care-taker for him – literally, the royal treatment! And I think he felt complete because of that.

The other person is Paul, who talks a lot about his weaknesses… he brags about them because they show off God’s strength, and stuff like that. But as bad as it sounds, that passage is sounding a little too familiar to comfort me this time. God knows I need something fresh, so this is where he led me:

“For the foolishness of God is wiser than man’s wisdom, and the weakness of God is stronger than man’s strength. Brothers, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. He chose the lowly things of this world and the despised things—and the things that are not—to nullify the things that are, so that no one may boast before him.” - 1 Corinthians 1:25-29 (emphasis mine)

It’s crazy to imagine, but God at his absolute weakest is stronger than the strongest man. If he gave me even the left-over scraps of his puniest strength, it would be way more than I would receive from anyone else. And from the previous verses he showed me, I realize that he doesn’t give me the scraps… he gives me his undivided attention, special treatment that caters to my specific needs on a moment-by-moment basis. So that means I get a top-heavy load of his power!

And here’s another thing: the passage says he CHOSE us. “He chose the weak things…the things that are not…” That would be me! Hallelujah, He actually LIKES disabled people! He doesn’t make ramps because of building codes, or provide personal aids because of Social Security laws… he does all this and more - he piles his own strength on top - because he wants to - because he LIKES to! That one floored me. I have a God who is more powerful than anything, and who is excited about caring for my needs – physical, emotional, mental, relational, and spiritual. I don’t need anything but him… now and forever. Praise God that I don’t have strength, but He does.

So this is all good news for me… but it’s good news for you too. After all, weakness goes deeper than muscles, and ankles and hands are only the surface of what needs empowering. What is your disability? What obstacles are holding you back from following Jesus? What help do you need right now? If you don’t know, ask God to show you, and then just ask him to take care of it - whether it’s building ramps or building bridges or breaking down walls. Don’t let these things stop you from trusting God - remember, he likes crippled people, because they get to benefit from his own strength and experience his grace.

“To him who is able to keep you from falling, and to present you before his glorious presence without fault and with great joy - to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen.” Jude 24-25

“May your good Spirit lead me on level ground.” - Psalm 143:10

“The path of the righteous is level; O upright One, you make the way of the righteous smooth.” - Isaiah 26:7

And I start thinking, how cool is it that God is into accessibility! I mean, it says right here that he leads us on smooth, level paths! That means I can keep following him with nothing holding me back… no plan of his can be thwarted, because he builds ramps, widens lanes, and smoothes out the bumps. At this point I am already encouraged and excited, but I keep reading…

“I was pushed back and about to fall, but the Lord helped me. The Lord is my strength and my song; he had become my salvation.” - Psalm 118:13-14

“Strengthen the feeble hands, steady the knees that give way; say to those with fearful hearts, ‘Be strong, do not fear; your God will come… Then will the lame leap like a deer…” - Isaiah 35:3-6

Now I’m REALLY excited, because He just took things a step further. Not only does he make things accessible, but he also plays the role of a personal aid - steadying me so I don’t fall, rescuing me, giving me strength and help. And then I read about how he is even like a personal trainer/physical therapist to David:

“It is God who arms me with strength and makes my way perfect. He makes my feet like the feet of a deer; he enables me to stand on the heights. He trains my hands for battle; my arms can bend a bow of bronze. You give me your shield of victory; you stoop down to make me great. You broaden the path beneath me, so that my ankles do not turn.” - 2 Samuel 22:33-37

There’s a lot of power and strength in these verses, and it all comes from the Lord.

1. Speed down an icy driveway and hit the brakes, to see how far you can slide.
2. Scrape snow off the car bumpers to make snowballs… and then throw them or just smoosh them into someone’s leg or butt.
3. Remove footrests and put your feet on top of a snow drift, so you can experience the crunching sound and feel of “tromping through” snow.
4. Go on an expedition down winding snow-covered paths with a group of friends and see how far you can get on your own before you get stuck and start spinning wheels and flinging mud everywhere.
5. Make loopy double-lined messages and shapes by driving around a snowy lane. (Also fun to do on the beach.)
6. Trekk snowy tire tracks through the house - see how many rooms you can hit in one trip. (Note: Do NOT try this if you just recently accomplished #4.)
7. Find an icy hill, have your best friend stand on the back of your chair with arms spread like wings, and go sailing down the hill at top speed. (Note: Make sure there is room at the bottom for you to come to a slow and smooth stop.)
8. Make snow cream with a friend.
9. Make hot chocolate for the dear soul who shovels a path for you to use.
10. Be the middle of a sandwhich of three people on a sled/toboggan.
11. Pretend to ice skate - do figure eights and spin in doughnuts as long as you can. Even more fun to spin if you have another friend in a wheelchair spinning too and holding your hand.
12. Pretend to play a hockey game with a group of friends who have excellent imaginations.
13. Put on mittens and hold them out to catch snowflakes. Then try to find two snowflakes that are the same before they melt.
14. Lean back and catch snowflakes on your tongue.
15. Be a train engine - let your friends hang on to the back and make a chain. You get to make the noises, lead the way, puff smoke, and crash if you want to.
16. If there is too much snow for you to get out, stay inside and prepare a big snowed-in party for friends or family. Make hot drinks and have a pile of blankets handy, and play some fun games.  

But for Christmas, my dad got me a keyboard with keys that are easy to press down, so it doesn’t take much effort. It’s in the corner of my bedroom, so I can play whenever I want. I still can’t play well, and will never lead a choir or perform in a concert or anything like that… But tonight as I played, I imagined Jesus was sitting on my bed, leaning back with his eyes closed and a smile on his face as he listened to my inconsistent, blundering chords. I played some by ear, and some by page - some of my favorites that I think might be his favorites too. He hummed along, without seeming to mind the frequent pauses and the incomplete six-part harmonies.

While I wish I could play a brilliant masterpiece for him, I am so thankful I can be myself with him - all my mistakes and shortcomings and weaknesses in obvious “dischord” - and still bring him joy. For he knows my heart - the desire to worship him in song and word and deed. And he knows how I am formed - that I am just made of dust that painfully muddles up the expression of my spirit.

As I finished the last song I could manage to tap out, he leaned over and took my tired and fragile hands in his own, and kissed them, and said with such honor and grace, “You have done a beautiful thing to me… You did what you could.” And I know that my tunes were as meager and yet priceless to Him as the perfume that was poured at his feet. Thank you, Lord, for receiving my offering of praise.

I can imagine the people who meet me don’t know how to act - Should they ask why I am in a wheelchair? What is the socially acceptable label for disabled people? How handicapped am I? Should they offer to help? Should they let me pretend I have everything under control? Because people have these unspoken questions, things really get more awkward than they need to be.

So I would like to answer some questions… at least, these are my answers. Everyone is unique, and handicapped persons are no exception. I have a feeling most handicapped folks wouldn’t mind at all if you addressed the obvious, but there are certain ways to do that unoffensively. Here are some things NOT to ask:

• What is wrong with you? Oh my goodness, my instant come-back to that is, “Nothing, what’s wrong with you?”
• What happened? Besides that being a vague question (what happened today? yesterday? just now? etc.) Very often, people are in wheelchairs because of neuromuscular diseases, in which case the answer may be way more scientifically complicated than you really want to know (Well when I was conceived, gene #__ carried an extra level of calcium that…) If something actually “happened,” like an accident, it may not be something they want to discuss at that time.
• Are you sick? Unless the person is sneezing and coughing, and you’d like to offer them a tissue, this is also not appropriate. Even if the person has a disease, they may not see themselves as sick, and don’t want you to either.
• Did you get hurt? Questions like this make a person feel like you are trying to diagnose them by guessing their causes or symptoms. In doing so, you give the impression that handicapped people have to be labeled, and you aren’t really wanting to know the person so much as the disability.

What to say, then? Say what you mean: “Do you mind if I ask you why you are in a wheelchair?” Very polite and honest. Do not be afraid of the word “wheelchair.” It won’t bite. It actually offends me more when people call it “that thing.” And as far as using the correct label is concerned, just don’t use one. It’s too awkward and impersonal to bother with. When you first meet, just refer to the wheelchair - use phrases like “in a wheelchair,” or “with your wheelchair.” When you refer to a group of people as a whole, “handicapped” is fine. I don’t recommend “disabled,” because we work really hard to help you understand that we do have abilities. When you get really close, you’ll learn how far you can go in teasing and using “taboo” words like “crippled” or silly substitutes like “handicapable.” But don’t use these insider words until you really know a person intimately. Otherwise, you just look like a jerk with no social graces.   

A good follow-up question might be, “What kind of things do you like to do?” This is of course in place of more awkward questions like, “Can you do ___?” When you become a closer friend I will let you in on the more intimate details about the limits of my ability. In the mean time, you may be surprised at the things I can do when you give me an open question.

Some other things that aren’t ok to say:

• How fast does that thing go? I don’t know, and I don’t care, and I think if you really stopped to think about it, you wouldn’t care either.
• I wish I had one of those! As much as it makes my life easier, I think walking, running, dancing and jumping are much more desireable than being confined to a wheelchair.
• Can you do wheelies? Yes. And I did them a lot when I was 10 years old, but a 25 year-old really doesn’t waste her time with it any more.
• Don’t run me over! Oh my grief, I am a far superior navigator than most people who walk. If you get run over it is usually either because you anger me to the point of violence (which is rare), or because you were not looking where you were going. The most common collisions I have are when people back-peddle right into me.
• I know someone who’s disabled/handicapped/in a wheelchair. Really? I know someone who can walk. Amazing, the coincidence.

What to say instead? Well, what would you say to any person you meet on the sidewalk? It is really important that you realize a person is a person, no matter what. Make eye contact, look at who they are and not what they sit in, and value them as highly as anyone else. I hope these “dos” and “don’ts” have been helpful, and that you will remember them the next time you meet someone in a wheelchair.