It's All Part of The Plan: Living In a World Where Nothing Is Spontaneous

A lot of people wonder what it is like to have a disability day to day. The truth is that it is fun and rewarding and stressful and challenging and ordinary and extraordinary all at once- which sounds very much like a description of life—with or without a disability. For every eye- opening, "no way,” “write a memoir” moment, I probably have five others that are painfully boring and feature me eating pizza or trying to figure out how I didn't notice that I was sitting on my workplace bathroom key for five hours. However, although my life with cerebral palsy includes so many of the humdrum daily encounters as any other life, I will be honest and say there are moments when it is very clear that my disability makes me “different.”

 If there is one thing I could say to summarize what makes my life unique from that of the average 22-year-old it would be “damn, this ‘existence’ gig takes a lot of planning.” In addition to using a power wheelchair, I also have a team of eight personal care assistants who I must rely on to help me with activities of daily living that most people do without thinking. Those are all the tasks like bathing, dressing, going to the bathroom, getting out of bed…basically, if it's a task you thought was reserved for sacred solitude, I probably have company to accomplish it. When someone who you may have interviewed and hired just days before has to put you on the toilet, you develop a talent for awkward ice breaker conversations that would make your college orientation leader look like a total rookie.

But planning your daily activities, the basic things necessary to survive, is no small feat. The word spontaneous may as well belong in another language, because every aspect of living with a severe physical disability is anything but spontaneous. Spontaneity is like that distant relative you have seen in the photo albums and heard a few weird stories about, but never actually met. You know he exists and that others have met him. But when you have a disability, he is just an idea, so you smile, and say that he sounds like a lovely guy… then; go back to figuring out what time someone can help you bathe next Friday. If that cute café you wanted to try can accommodate a wheelchair. If you can get a ride to work, to school, or to a friend’s house. Normally, the only spontaneous thing you expect is the spontaneous combustion of your ancient paratransit bus. I am used to some serious planning. Long ago, I accepted that spontaneity and I, for the most part, would be strangers.

Most days, I am OK with that. But on many other days, spontaneity is someone I would like to meet. At a time of life when most of my peers can make spur of the moment plans, almost everything I do has to be decided on and set up a few days in advance. There are buses to schedule.  There are personal assistants to arrange. Often, I must ask assistant A if she minds coming later than usual so I can go out to dinner but still be home before my shift with Assistant B or the dreaded full bladder.  I have to be conscious of what I order. The second Coca Cola is not the carefree refill it would be in someone else’s life. More fluid equals more pee, and even peeing is scheduled, so I can make sure I will not be squirming uncomfortably somewhere without anyone to bring me to the bathroom.

This is not to make you feel sorry for me or to make you think that my life is terrible. My life is good and happy, but every now and again, I feel a strange longing for a spontaneity I have never had the chance to experience. I think of what a thrill it would be to decide to go to a movie ten minutes before it starts. How weird and wonderful it would be to hop in the car to pay a surprise visit to a friend. To stay up all night because I could and not have to worry about what time someone was coming by to put me in my bed. To not have a schedule so delicately intertwined with those of the people who button the jeans, comb the hair, and take over where my gently used limbs fail me.

There can be something beautiful about the way my fate helps me understand interdependence. The way it helps me to know what it means to need someone and to be needed. The deep, sometimes too-real knowledge of what happens when someone you depend on lets you down. But for all the things it teaches me, it can also be so frustrating.

Most of my peers make all their plans at the last minute. Not too many twenty two year olds want to think about the logistics of a lunch date that will happen next week. Not too many of them are anxious to jump online and investigate which restaurants in the area are wheelchair accessible. To many of them I represent extra time, extra hassle, and extra considerations at a time of life when convenience is most enticing. If the average Joe has a choice between spur of the moment plans and an easy ride in his buddy’s new car or waiting for a crappy accessible bus with me, chances are I will not be his first pick. There are no words for how isolating that feels because the unspoken thought behind it is “it’s so much work to be your friend.”

Sometimes I feel sandwiched between two generations. Young and in my prime, checking my Facebook and listening to all the new music. Planning for my first job and thinking that however far into the future they are, I am already in love with my children. At the same time, in this sandwich, I feel very old. I have to think about who will take care of me and hope that my needs will not be a burden to anyone. I look at elderly people and I feel like in some ways, I belong with them, because I know what it is like to depend on others when the body no longer moves as it once did. I laugh to think that most people’s greatest fear about getting old is losing the ability to walk. I am not afraid when I think of old age, because in many ways, my body is already there.

When I watch other twenty somethings hop into their cars without a second thought, go to the bathroom in two minutes, and change their clothes whenever they feel like it, I wonder if they consider the freedom they have. I’m certain that most of them don’t. They are young and spontaneous. They have the luxury to think about only the next moment. They don’t understand what it is like to live in this “sandwich.” They are young. They don’t understand and I cannot fault them. They don’t understand, but sometimes I wish they did.

The One Where I Review A Very Weird Disability Awareness Book For Kids

Well friends, it's March and in addition to being the month that allegedly welcomes spring, it is also Cerebral Palsy Awareness Month, a glorious celebration of my people. So far nobody has really taken the bait on my fun and culturally appropriate awareness ideas such as an accessible version of limbo called Gimpo, "Where's Waldo? Paratransit Bus Edition,” and a microwave meal cooking competition, but still I will do my best to let everyone I meet know some crucial tidbits about life with cerebral palsy this March. Some people say any awareness is good awareness, but I'm going to have to disagree on that one. Some attempts at awareness, though spirited and well intentioned, just don't do the job. Some border on offensive while others are just mildly to moderately absurd and clearly didn't have an irony spotter on the public relations team. One such example is the “I Stand for Cerebral Palsy!” awareness t-shirts I have seen circulating on the Internet this week (see here). Noble intentions indeed, but we could perhaps begin by noting that a cerebral palsy awareness campaign centered on standing is downright hilarious and ironic. The little figure is not only standing, but also reaching for something at the same time, which with our balance or lack of balance is a little too much to ask. Many people with cerebral palsy are able to stand, some unsupported, but the fact of the matter is standing is never easy for us, nor is it generally a good way to represent our experiences because perhaps the most basic "awareness starts here" moment should be that standing is hard for us. Maybe I should get a custom edition with a person who just fell on the back of the shirt.

In the field of awareness fails, I came across this gem over the weekend. I saw on my Facebook newsfeed an article about “12 Awkward Children’s Books” (see here) and naturally the article spoke to me as a bookworm and a professionally awkward individual. I suggest reading the entire article for giggles but I’d like to highlight one in particular because naturally one of these awkward titles had to be a failed attempt at teaching children about people with disabilities. It was written in 1995, and to be fair we have come a long way since then, but I shudder to think that this book ever seemed like a good idea to teach children about disabilities. I won't even bother to say it's offensive because it is so far off base that I’m too busy snorting laughing and trying to figure out if this is even real to be offended.

This prize, written five years AFTER the passage of the Americans with Disabilities Act, may have been haunting the children's section of your library back in the day and I cringe to think that it still may be in some dark dusty corner where it lurks waiting to be part of an outdated awareness campaign. If you thought any awareness was good awareness, you may think again after finding this treasure.

Here's just a few reasons the book had me questioning children's literature and every person who was around ever in the book world of 1995. I was two at the time this was published and I am very glad it was never recommended to my mom and dad, unless it was to prepare them for the snarky sense of humor I would have in the future. (Watch the video here of this awesome young lady named Sarah Morrison reading it aloud here. Really. Do it.)

1.     The title is…. Who Cares About Disabled People?

While the goal here seems to be educating kids about disabled people, the title makes it seem at first glance as though we are encouraging future generations to be completely apathetic about the existence of people with disabilities in the same casual “Who cares?” kind of way that we all experience in elementary school when our math teacher tries to convince us that box and whisker plots have a practical application. If the objective is to get people to care that we exist, the author want to revisit the title. (See the Amazon page: here)

2.     The girl in the wheelchair on the front cover is petting the blind girl’s service dog

I'm very glad that the author thought to feature people with different types of disabilities on the front cover, but the girl in the wheelchair is just casually petting the blind girl’s service dog. Rewind: the first thing you are taught about service dogs is not to pet them while their coats are on, and I assure you that out of all the people to break this rule, the perpetrator would not be another person with a disability that is used to having his or her space invaded by others. If the author wants to make this doodle realistic, the unwanted dog petter should be a stranger who comes out of nowhere in the mall, starts petting the dog, and asking if it knows how to drive.

3.     The author uses the word handicapped a bunch of times

 So it was only 1995, and we all still thought ADA only meant “American Dental Association.” Some people still do. The “right” word to use to describe us is always changing, being reviewed, or being fought about on blogs. Everyone’s opinion will be different. But I’m pretty sure handicapped is very widely viewed as antiquated these days. Just saying.

4.     The line about how “we can learn what it’s like to be handicapped”. Oy.

Aside from my thoughts about how disability simulations don't work and give people very shallow insight into our lives as though disability can be tried on like a costume, we just need to talk about the awkward depiction here. Apparently, you can understand our lives by wandering around in disorganized bunches, falling and lying in an undignified heap on top of another child (who is “learning”….right? See 0:47). I will say that a lot of situations in my life with cerebral palsy have resulted in an undignified heap, most notably when my best friend and fellow palsy person tripped over me in a bookstore and wound up sitting on my footplate in the checkout line. However, falling and lying in a pile will not teach you what it's like to live my life. It may however illustrate why Twister is not a good game for an inclusive party.

5.     The “everyone is handicapped in some way” analogy

I appreciate the fact that the author is trying to emphasize that we all have things we can't do, but the fact is not everyone's difference is subject to institutionalized discrimination. People with disabilities can be kept out of places simply by their architecture and have to call ahead when looking at new restaurants. Sorry, awkward boy playing a violin indoors, I fail to see the parallel. (See 1:06)

6.     The author implies that you can come to understand our lives by drinking and drugging…?

Apparently, the author thinks drinking and doing drugs will create an appropriate stimulation experience. Oh? I admit sometimes my lack of balance makes me feel like I may as well be drunk, but to imply that this is a good way to see what it's like to be me is rude and just… weird. Not to mention that instead of just telling kids that drugs and drinking are unhealthy, the author insinuates that a great reason to stay away from these activities is to remember that it could result in them turning out like us. Ouch. I generally don't like my life being used as a scare tactic for innocent children. Besides I think my life is pretty awesome.  However, according to this book, accepting cheap beer from a strange blonde boy in a leather jacket will lead you to understand my perspective. Hm. (See 1:27)

7.     The body shaming on the page about "unhealthy food"

Aside from the thoroughly confusing insinuation that eating a hamburger will make you turn into to me (“Eat a Burger! Grow a Wheelchair!... the next big ad campaign?), there is some blatant body shaming here as the author implies that gaining weight will be a “handicap”. While large amounts of weight gain can have negative effects on your physical health, this page seems to imply that kids should be afraid of people who are bigger or that they will somehow become “less than” if they gain weight. Or, apparently, if they eat "junk food".  What if I told the author that I already use a wheelchair and sometimes I eat at McDonald’s? Mind blown. (See 1:29)

8.     The “we should feel fortunate page”

Maybe what the author is trying to say is that non-disabled people should appreciate that they are not subject to ableism, but instead it comes off as “Phew, we’re not one of THOSE people!” It is not always easy to have my disability all the time, but I certainly don't want people to pity me or look at my life like “Well, that would suck!” because I love my life, thanks! (See 1:43)

9.     Just like human beings!

The author says at 2:25 that “most handicapped people” are “just LIKE human beings!” Um. What? We are not just like human beings. We are human beings. This page makes it seem like sometimes we put on people costumes for fun.

10.  The old man running over the innocent children

It seems as though the author was trying to say that disabilities don't make people automatically angelic. This is an important concept and actually quite progressive. But I'm not sure the way to do it is to show an irate elderly man running over some biking children in what looks like a large red golf cart. But.  Moral of the story: We can be buttheads too! (See 2:31)

11.  The “help the handicapped!” (Possibly without their permission) page

There is a well-intentioned page that seems to tell children that we need help sometimes, but instead it makes it seem like we always need help and shows some awkward doodles of an elderly man being crossed over an intersection and a nondisabled person grabbing a box of cereal for a disabled person off a store shelf. The thing is, there seems to be no discussion about how we should only help disabled people if they need or want our help. Help without consent is not helpful.  Maybe I wanted to reach my own damn cornflakes. (See 2:47)

12.  They tell jokes too!

The author seems to be alluding to the fact that we have senses of humor but does so by saying that handicapped people often joke about their “problem” as though we all have the same problem and as though our disability is the problem in our lives. We all have problems and most of the time they are quite like everyone else’s. My disability is not my problem. Finding the motivation to shave my legs in the winter may be. Oh.  And there’s the fact that the author makes it seem like we happily tell jokes to entertain others like sea lions. And as for joking behind my back, I’m pretty sure people with and without disabilities do that to each other. If I saw someone leave the house with pants and underwear on the back of his or her wheelchair I would be joking about me for sure.

13.  The weird way the author talks about not staring

The author wants to tell kids not to stare at disabled people, which is great, but does so by showing a little girl strapped into an otherworldly looking blue lawnchair. I have so many questions. I have to admit I’m staring. (See 3:01)

14.  The author’s confusing statement about pity

The author tells kids not to pity us. Awesome. Then why on the previous page are they told essentially to feel fortunate that they are not like us? Doink. (See 3:10)

15.  When you’re friends….

After a couple more awkward doodles of able-bodied people having fun with disabled people (think man with a brace struggling down the beach) and a reappearance by lawnchair girl, the author declares triumphantly “when you are friends you don't notice handicaps”. I know that the author is trying to say not to see ONLY our disabilities, but there it is again, the insinuation that you can't possibly see a person AND the disability without him or her becoming less of a person. My friends see my disability and still see me as a valuable person. That's the way it should be. Frankly, they better notice my disability because if they don't, they may foolishly invite me to take the stairs with them. What it really should say is “when you’re friends, you love each other if you have a disability or not.” And if you really love me, you learn how to make clever jokes about my disability. (See 3:45)

And so, because we’re friends, celebrate this awareness month by being conscious that some awareness is good awareness and other awareness is just an epic fail that will probably have a group of friends laughing at you and making a ranking of hilarious awareness campaigns gone wrong. Happy Cerebral Palsy Awareness Month, all!  You are all invited over to prank call the wheelchair repair man and play a game of Pin the Wheel on The Wheelchair.  Just don’t bring any balloons. The potential popping may trigger my startle reflex.  In the meantime, I do hope this author has plans to continue the inappropriate children’s book series. Some titles I suggest are “When Will My Paratransit Bus Come?” and “ I Pay People to Shower Me.”  I’m waiting patiently on my book deal. In the meantime, I am laughing at this author.

Author’s Note: Props to the snarky young woman that read this on YouTube. You are a citizen hero.

Why Are You So Jumpy?: A Handy Guide to the Moro Reflex

If you’ve ever spent any time at all with me, you’ve probably noticed that I seem a bit jumpy most of the time. It’s not uncommon to see my whole body splay out like I have just seen a ghost after hearing a noise that seems insignificant to everyone else in the room. Since questions and looks of puzzlement seem to pop up (no pun intended!) all the time about this particular quirk, I have finally decided to address it in writing.

Friends, meet the Moro reflex. Also called the infant startle reflex, or just “the startle” if you know the street lingo, this guy is a neurological leftover from infancy, a souvenir, you might say. When a baby is born, he or she has a set of primitive reflexes or automatic responses to stimuli that “integrate” or go away as an infant develops. One of these is the Moro reflex. When a baby feels like he or she is falling or has lost support, the arms, legs, and fingers will extend and then retract, and the body will appear to “jump” as if frightened. In typically developing babies, the reflex will go away between four and six months of age. For me, and a lot of others with cerebral palsy, it stuck around, and makes itself known several times a day. An unintegrated Moro reflex or “startle” means that my response to sudden stimuli is hyperactive and I will react strongly to triggers even if I don’t want to.

The most obvious trigger is a loud noise, but flashes of light, sudden movements, and even strong smells can also set off the response. I do happen to be a nervous person, but having a startle does not mean I am “just nervous”. It is also quite different than the natural jumping that neurologically typical people experience. It is true that everyone will startle somewhat after an exceptionally loud noise, but not everyone will experience the involvement of the entire body or jerk forward as though something has just exploded in response to the sound of bubble wrap. So I appreciate your good intentions when you say "that happens to me sometimes when I hear *fill in VERY loud noise *” but I assure you it is not the same thing. So what does this mean for me in practical terms? How does it affect my everyday life? Here are some things I would like you to know.

1.                    The startle reflex looks very goofy and sometimes it is very entertaining. I make jokes about it all the time, but sometimes it is not funny because my whole body jerks forward, my muscles get really tight, and my heart speeds up. The startles have become increasingly painful as I have gotten older and have more spasticity in my muscles.

2.                    You don't have to apologize for startling me if you didn't do it on purpose. Sometimes something as simple as saying hello can trigger me, but that doesn't mean I'm not happy to see you or that you did anything wrong. The response is so automatic that sometimes you will set it off without doing much at all. It is okay… it happens (a lot).

3.                    Please do not set it off on purpose. It causes me physical pain and it looks funny, not to mention it can make me spill or drop everything in my hands, make me drive my chair forward by accidently hitting the joystick, or cause me to fall if I am standing. I know it is very tempting to startle me sometimes to get a goofy reaction, but please don't.

4.                    Preparing me or warning me about a trigger won't change anything. Reflexes are so automatic that they happen anyway and sometimes the warning makes me tighten up my muscles in anticipation and worsens the response.

5.                    I have to be very careful with food and drinks in places where there might be a sudden noise or motion. A startle while I'm eating could cause me to choke or spill something that could burn me.

6.                    It’s a tough blow, but I will never be a firework technician, ambulance driver, balloon artist, or electronic scoreboard operator (that buzzer, though). My motor skills are probably further reason to stay away from these job offers. Just maybe.

7.                    I will probably never date anyone in the above professions. Sorry boys. As if I need another reason not to date a clown.

8.                    I prefer if you do not tap my shoulder or touch my hand suddenly to say hello. Please come in front of me and say hi. If I startle anyway, it’s because your smile is so dazzling. (Just kidding. Don’t flatter yourself.)

9.                    If I'm at a party with balloons and clowns it is hard to tell if I look keyed up because I hate clowns or because the balloons might pop. It might be a little of both. You be the judge.

10.                Several times a day I look like I've just arrived at a surprise party. You are a narcissist if you think running into you is that exciting every time. It's just my inner four month old coming out to play. Some say it's even more noticeable on Throwback Thursday.

So what does this neurological surprise party mean in practical terms for you, and for anyone I may meet in the future?

1.    You probably don't want to sit next to me or in front of me at a combat movie. You just may get popcorn or soda showered all over you, which isn’t ideal, unless you're into that kind of thing.

2.    Don't be offended if I don't want to accompany you to a production of “Annie Get Your Gun”. You can call me though if she decides to get a super soaker.

3.    If you're sitting across from me and you plan on being loud, you may want to wear goggles because my food or whatever is in my hands may well come flying at your face.

4.    Note that I still love the Fourth of July, but the song “Firework” has a whole new meaning for me.

5.    If you have any children that like to sing, “Pop Goes the Weasel” I make a pretty adorable weasel.

6.    I will love you forever if you knock on my door softly. If you pound on it, I blame you if I punch myself in the face.

7.    I probably won't come to game night at your house if we’re playing “Operation”. Don't ask me to play “Chutes and Ladders” either. Real life has enough access fails.

8.    I have only startled due to a smell one time. So if it happens in your presence, you must smell pretty bad.

9.    Your attempt to say “Boo” in a creepy voice isn’t actually as authentically ghost-like as you think. My reflexes just make me a good audience. You are not a ghost. Don't quit your day job.

10.Feel free to throw me a surprise party (see 10 above). You don't even need to hide and jump out to get the perfect reaction, so if you're a lazy party planner, I'm your girl.

I hope that this guide has demystified the Moro (startle) reflex for you, or at least helped you to realize why I turned down your invitation to a Civil War reenactment. It’s not you, it’s me. But if I startle because of your smell, trust me, it’s you.