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.

Hey You, My Name Is Not Wheelchair

Grumble grumble grumble. Transportation. It remains one of the biggest obstacles for people with disabilities, especially if you can't get out of the chair to travel. If you can get into the vehicle at all on public transit, it's usually in a tiny cramped space that smells like an armpit. Backpacks and pocketbooks swing in my face, and there I am, at “butt level”, hoping that nobody has gas.

Then, there is paratransit, the charming alternative offering door-to-door service on a smaller bus just for people with disabilities. Paratransit buses, like the “short buses” I rode in high school, are known for being only vaguely reliable, and they usually offer their passengers very large time windows, as though they have nothing better to do all day than wait for buses and leave home at 7:03 for a job that starts at 9am in an office two blocks away. These rides often feature drivers who tell inane, unfunny jokes and feel the need to narrate your ride on the lift with condescending “wheeeee!” noises. After the very thing happened earlier this week, I feel very compelled to say “wheee” the next time one of these ambulatory offenders climbs up the stairs and compliment him on his skilled and inspiring use of his limbs. I could go on about transportation all day, but that is for another article.

The other morning, paratransit wanted to pick me up at 7:32 although my academic commitment, some ten minutes away does not start until 9 AM. My personal assistant does not come until 7 AM, so unless we had superpowers, being ready in 32 minutes was just not going to happen. Clearly, whoever makes the bus schedule has never tried to put on pants with cerebral palsy, or experienced the feeling that sitting up on the side of the bed can't be that different from the “insanity workout” many of my peers have mentioned. Being ready in 32 minutes is an enchanting thought, but it is only possible in the world of paratransit, where we fill out ten pages of paperwork about our every impairment, only to be treated as though we should be able to race out the door whenever they see fit.

In light of the fact that having pants on is a prerequisite for most professional endeavors (I say most to be open-minded), and I knew I couldn't possibly be dressed that quickly, my other assistant and I made the daring decision to check the regular bus schedule and join the masses. After settling into my tiny little space, praying for safety in the sea of butts and backpacks, I was off to meet the day.

Then, the driver said loudly: “Is the wheelchair ready?” Hm. Last time I checked, the wheelchair is not able to answer any questions. I am not ashamed of my wheelchair and I don't have a problem acknowledging it, but I don't appreciate my entire identity being swallowed up by it, as if an empty wheelchair is riding the bus, ready for a successful day. The image is amusing, my wheelchair motoring through town independently. The way the driver objectified me made me feel as though my wheelchair goes out by itself and picks me up at daycare after work. I am still cracking myself up picturing it rolling through the door and saying, "Honey, I'm home!” All jokes aside, I am still a person, and even though I have a wheelchair, the fact that there is a person in it should not be forgotten. The reality that everyday speech allows for our humanity to evaporate into the metal and plastic and overpriced neoprene on which we sit says something about the way society treats us. Words lead to actions, and based on this woman’s words, I am just a wheelchair.

The driver also addressed me as “wheelchair”, as though I should be expected to answer not to a name, but to the mention of my mobility device. My wheelchair is very much part of who I am, but it is not me, it is just the way I get around. If this were truly a way to talk about people, then maybe next time I should address her by saying “Hey legs!” in a loud voice and assume that she will answer.

Because I know this phrase often comes up in situations like this, I will add I have never been a fan of the colorful, often cheesy posters beckoning people to “SEE ME, NOT THE WHEELCHAIR.” While I don't want my personhood to disappear into the wheelchair, I do not think my wheelchair should have to be treated as invisible to see the person sitting in it.   Acting like my wheelchair has to go away in order for me to earn my personhood at best triggers the hilarious image of non-disabled people putting on some kind of new age goggles that make me appear as though I’m sitting on thin air. At worst, it triggers the thought that others don’t see “wheelchair” and “person” as compatible. If you can only see me as a person when you don’t see the wheelchair, it implies that the presence of the wheelchair negates the ability to treat its occupant as a human being. My wheelchair is my constant companion, and rather than calling me “a wheelchair” or willing the chair away in order to see me, I challenge you to see me and the wheelchair, and at the same time, see someone who is moving along in the world, looking for the same opportunities that so many people take for granted.

Fun Over Function: "The Special Needs Gift Guide" and Learning That Life Isn't All About Therapy

I’m back after a short hiatus and it’s that time of the season. Yes, the holidays are here! The snow is falling, my friends and I are trying not to fall, and the temptation to spend my entire SSI check on chocolates and holiday greeting cards is ever growing. After another year, the media has still failed to recognize that Rudolph was a victim of blatant disability discrimination, followed by shameless exploitation. I’ll have to wait until next year for that tell all TV special, but as sure as an overplayed Christmas song, a holiday classic has returned. Not sure which I mean? Of course I’m talking about the “special needs gift catalog”. This annual bundle of joy pops up all over the Internet, eager to make even a toy for a kid in a wheelchair criminally overpriced. Because that little piece of Velcro triples its cost, and requires the insight of a specialist, right? While they are very well intentioned, these special needs toy catalogs don’t make me feel very in the spirit.

While some of us may need something adapted, and it would be wholly impractical to buy me a Pogo stick, I don’t think our holiday interests are so outside the “norm” that they merit entire “special catalogs” and articles declaring what a “special” task buying gifts for us is.

According to one such article, “finding the perfect gift for a child with special needs is rarely as easy as popping down to the toy store, picking an age-appropriate gift, and wrapping it up.” Um. Because our wheelchairs and walkers and crutches (oh my!) must surely negate our interest in music, movies, and new clothes, right? These articles, written by “experts” of course, seem to be under the impression that while other people look forward to a very merry and bright season, we disabled folks must be seeking a very merry and therapeutic season.

While I adore all of my doctors and therapists, I think I speak for the vast majority of us when I say we’re thinking more about how many cookies would be remotely acceptable to eat at once than about the therapeutic value of our gifts. The famed "Toys R Us Gift Guide for Differently Abled Kids" (excuse me, while I gag on the euphemism), while well intentioned indeed, even goes so far as to classify each toy according to the corresponding developmental skill. Therapy can be important, it can help us do things we couldn’t do before, hell, it can give help us meet a best friend in the waiting room, but come on, people! Must even our fun be classified according to the developmental milestones we didn’t quite make? I thank my lucky stars this season that my mom and dad never used Christmas as an undercover therapy session, and that they never raced to the “gross motor skills” section of the catalog to fill my stocking. Perhaps they got the message that any attempt to develop my motor skills on Christmas morning instead of letting me just have fun was the equivalent of getting a lump of coal. Or maybe they noticed that trying to link together a Barrel of Monkeys with my palsy hands would make me feel like I landed on the naughty list. I realize that some disabilities make certain toys frustrating. Finding a toy or a gift that avoids frustration is a very worthy goal. But as a person with a lifelong disability, I encourage you to remember that “not frustrating” is not synonymous with therapeutic.

 It certainly would have broken my spirit as a kiddie if my sisters got to tear open their presents to be met by comments about how fun they looked while my presents were declared to “be good for my motor skills”.  One thing glaringly absent from these “special catalogs” is a review of how fun each toy is. I can’t recall a single kid who tore open a gift beneath the tree and shouted, “This will be so great for sensory integration!” I’ve never seen a depiction of Santa in which his bag is overflowing with Theraputty or obscenely priced adapted forks. Another special needs gift guide classifies items by "therapist picks" Again, I love PTs and OTs with all my heart, but where are the top picks from the kids who have to play with the toys?

Disability does not negate the need for fun, the need to do something mindless, the need to be just a kid. While I would be overjoyed at the production of wheelchair shaped “slice and bake” cookies, at the end of the day, I’m just a person, and especially as a child, all I wanted to do at Christmastime was have fun. I know when you have a kid with a disability, there is constant pressure to “do something” and it’s easy to get wrapped up in the therapy craze.

 But as someone who has had many years to learn the truth, I can tell you this. I remember very little about developing my hand- eye coordination or practicing my dynamic sitting balance. I don’t recall that bottle of Play-Doh and think to myself, “Fond memories of improving my motor skills!” I do remember, with great joy, being given a childhood in which fun did not always have to be paired with a functional skill. In between the appointments and the IEP “progress notes." sometimes it’s OK to skip therapy and get ice cream. Sometimes it’s OK to say, “Today I did ZILCH to address my left sided weakness. Today I lived… and it was awesome.” So, if you really want to know how to buy the perfect gift for disabled kids, there aren’t too many special rules. Think about what they like. What makes them happy. What looks like fun. What would make them believe in magic. Chances are, you can toss aside that occupational therapy catalog and buy a copy of that album all the kids are listening to. Because perhaps the magic of waking up on Christmas morning, or tearing open your Hanukkah gift is that you can be a kid, who in that moment, doesn’t have to give a crap about therapy.

I Know I'm A Person. Thanks for the Reminder!: The Problem with Obligatory Person First Language

Growing up as a disabled person, I am keenly aware of the ongoing debate in the disability community about language. In fact, the sentence I’m about to type may cause a few people to cringe. I am disabled. Yep, I said it. And I’m not going to take it back. This phrase has caused many people over time to scold me that I am a person with disability. It’s not that I find the term people with disabilities offensive, but I do find its compulsory use to be. I tend to use these terms interchangeably, in fact. But the societal insistence on “person first” language has to stop. People have the right to identify as they choose. Period. Don’t tell me what to call myself. Your training, degree, and lengthy observations about “people like me” do not trump my insight about my own experience. In addition, the “person first” obligation as an unbreakable rule implies that unlike other identifying adjectives, disabled is inherently negative. Think about it. No one would judge me if I chose to say, “I am a woman” or “I am an American” because we have been raised to view these words with a neutral connotation. Disabled, on the other hand, because of the pity, fear, and misunderstanding surrounding our community, is ingrained in our collective mental lexicon with a built in negative connotation, an unspeakable adjective so assumed to be associated with misery that the people it describes have been stripped of their right to use it by people far outside our lived experience.

 I am not afraid to call myself disabled, because to me, there is no shame in using it. It doesn’t mean bad. It doesn’t mean ugly. It doesn’t mean all the unspoken undesirable things you’ve been taught. The logistics, discrimination, and social barriers living with my disability has come with are challenging, but they are part of the person I am and the person I will be. Disabled is just one of the things I am. I am not saying it is my entire definition, but it is part of my definition. Don’t tell me I would be the same person I am if it went away or never existed, because the people and experience it has given me have built me. They are not empty things without value. Not every single moment of a disabled life is profound, earth shattering, or worthy of a term paper. Sometimes, my moments are just regular, but they are mine. I would not be the same person had I never met my wonderful physical therapists and doctors. If I hadn’t been dragged to hours of physical therapy, some of my best friends may never have met me.

 I wouldn’t have my memories of summer camp, or know the feeling of the buzz of my wheelchair in motion through my feet. I would not be the same “me” that I am today, and when I think of all the people who would never have graced my path, picturing another reality seems so sad. When I think of the word disabled, I sometimes think of annoying things like surgeries and my braces getting too hot in the summer, but the good things outnumber the bad ones that come to mind. Certainly, when one of identifies as a woman, not everything associated with being one triggers happy, positive thoughts. Especially not when she is crying along with the particularly touching peanut butter commercial at a certain time of the month. But in identifying as a woman, she does not summon the political correctness police, who advise her that she is a PERSON and quickly correct her statement to “a person who identifies as a woman"while ensuring that their children did not hear the word “woman”.Of course, there are sexist assumptions about women, but no compulsory linguistic pressure to identify as a person first.

Then why are disabled people asked, even forced, to separate from their disabilities in everyday speech as if embracing them, or merely acknowledging them relegates us to a big, smelly pack of undesirables? My disability is part of me, and I refuse to treat it as something that must be overlooked in order for one to be seen as a person. My disability is infused in my person, not an ugly outgrowth that must remain next to my person.

To all the people who have argued with me not to call myself disabled because “I am a person first”, my answer is this. I know. Of course I am. Why would putting disabled in front of that negate my personhood? Just like every other human being’s, my personhood should be implied. If I say disabled, will you suddenly forget that I’m a person? If I have to emphasize my personhood every time I speak about myself, it doesn’t mean I am being “inclusive” and “correct”. It means that our language implies that without proper emphasis, my personhood is in doubt. Furthermore, if I am a “person first”, then so is everyone else. If the intent is really to honor and respect people, then theoretically, members of every group should be prancing around being sure that everyone knows he or she is, in fact, a person. If we really want to follow the person-centered logic, then where are the flyers about the “people who are gay” or “people who live in America”? It seems that other groups have been allowed to take their personhood for granted, and so “person first” language seems unnecessary and cumbersome. If the concept of personhood were so important, every demographic group would be organizing “a person pride parade” that could really be one giant parade because we’re all people, right? If personhood needed so much regular emphasis, we’d be hosting ally trainings for the family dog. The thing is, for most of us, society “just knows” that personhood is there. It only needs to be underlined and announced if it’s somehow in question. Perhaps we should be asking ourselves why the disability community has been so dehumanized that our personhood is required to be broadcast on a megaphone every time we talk about ourselves.

 Other groups do not have to send a constant reminder that they are people. Those completely outside of their demographic do not treat their adjectives as if they will make those they describe no longer sufficiently human. There is no insinuated stain attached to them, or a pressure to loudly and proudly announce one’s personhood before it disappears. I do not judge proponents of person first or seek to force identity first language on anyone who dislikes it. You can keep using people with disabilities if it makes you happy. That’s the beauty of choice. That’s what makes an identity. But please, do not tell me what I am, or act like my personhood will be obscured if it precedes the word person in a sentence or two. I am so confident that I am a person, not a puppy, a kitten, or a pig, that I will continue to treat my personhood as an assumed trait, always at my side, even if it is sometimes undeclared. Next time you remind me that I am a person first; I would like to say “Thanks. I thought so. What made you think otherwise?” and then remind him or her that she is a person too, in case there were any doubts.