Title: Marcelo in the Real WorldAuthor: Francisco X. Stork
Date of Publication: March 2009
Rating: 4 out of 5 stars
Marcelo in the Real World is a coming-of-age story touching on neurodiversity, ableism, racism, family, ethics, religion, sexuality, and love – in short, all the passion and philosophy of a teenager stepping into adulthood as experienced by a young neuroatypical Latino man. While Stork is not, as far as I can determine, neurodivergent himself, I find Marcelo to be relatable and authentic as a neurodivergent character: from his subtle stimming, to his sensory struggles, to his logical rules-based method for deciphering people, to his thoughts on life and faith and God. And, quite satisfyingly, the resolution of his story does not come with a cure or a fix for his differences: just an increased understanding of who he is and a vision for living in the “real world” as someone who doesn’t quite fit.
I’m joining the quick takes link-up today at This Ain’t The Lyceum with a rather more serious topic than normal. Head over there for the rest of the regular varied line-up.
Disability is innately challenging in various ways (hence the term disability), but it is also socially challenging because the surrounding culture is not designed to accommodate disability, typically misunderstands, and frequently actively stigmatizes it. When a person in a wheelchair can’t navigate safely down the sidewalk because someone left one of those electric rentable scooters lying across the width of it, for example, that is a challenge posed social ignorance and carelessness, not an inherent challenge of the disability. When people assume that a disabled person’s life will be less meaningful, less joyful, or less worthy, just because of the disability, that stigma and misunderstanding add a significant challenge that is not actually part of the disability itself: the burden of proving oneself to the community instead of having one’s potential and value automatically acknowledged. And in the face of that assumption, repeated over and over again, the disabled person may even begin to believe it themselves, in what is called internalized ableism.
I can really only speak for myself and the disability I know well, autism. But for me, internalized ableism is:
…scratching my arms till they bleed because it’s more subtle and socially acceptable than flapping my hands in the air and I really just don’t want anyone to notice that I’m different and struggling here, please. (Just realizing this and giving myself permission to flap and stim in other more obvious ways has reduced my self-injurious stimming a lot, actually.)
…laughing at everything that is probably a joke so that I’m not the clueless person who doesn’t get cultural humor. (I laugh when I’m nervous or overwhelmed too. I hate this. I hate that my emotional responses don’t match up to what they “should” be and I have hated it ever since an adult got angry with me as a kid for laughing in an “inappropriate” setting. Internalized ableism is often learned through emotionally significant childhood events; it often speaks to the heart with cruel, cutting hate.)
…acting like I know things, even if I’m not totally sure, if it seems like everyone else knows already – only admitting ignorance if someone else does, because then I’m not the weird one who might not be worth bothering with.
…believing I can’t serve God in any meaningful way because I’m too anxious to build relationships and share the Gospel with my neighbors/coworkers/homeless people/etc.
…trying to get my kids to act “normal” instead of helping them live fully into the way God made them, disability and all, because I secretly (subconsciously?) think displaying their disability will hurt their chances of friendship, community, inclusion, and happiness.
…doing everything on my own without asking for help, because I think asking for help for disability-related reasons either means I’m a useless burden on the relationship or lazy and immature and relying on my disability as an excuse.
…assuming that the people I do rely on (particularly my husband, at this season of life) resent me or see me as a burden, or would do so if they understood the reality of my disability. I felt this years before I had a diagnosis: I knew that I was different, that I didn’t process things “normally”; that I had struggles no one else I knew had; and I thought this made me deficient and broken and that anyone who really knew me would stop loving me because it would be too much work. And that is just with Level 1 Autism. I can only imagine how internalized ableism, if not actively combatted, could bring down smothering waves of anxiety and depression on someone whose support needs are higher, either physically or emotionally.
In short – internalized ableism can rob the disabled person of joy, shut down their authentic self-expression, replace their faith and hope with fear and despair, and reduce the blessing and the gift they can be to the communities they are a part of. I don’t have a great solution for eradicating it, and I think it can only be done hand-in-hand with eliminating more generalized ableism in society – disabled people are going to pick up on the attitudes others have towards them, and especially as children can easily internalize those attitudes.
The following chart is, however, a well-written, sensitive, and helpful guide for evaluating your own attitudes toward disability. It’s aimed towards the non-disabled reader, but I honestly found it quite helpful in unearthing my own internalized and self-directed ableism as well.
Where on the chart do you see yourself? What has led you to where you are now in your understanding of disability, in either yourself or in others?
Has internalized ableism been a part of your life? If so, what does it look like for you? How do you move past ableism and learn to walk with joy in the fullness of who you are as a disabled person, beautifully and wonderfully made by a good and loving God?
This post is part of my april autism series for autism acceptance month. Visit the first post here for links to the rest of the series!
Before we began Rondel’s diagnostic process, I had never heard the words “stim” or “stimming” – so I’ll assume it’s new to a lot of you as well.
“When we feel an emotion or a collection of emotions very powerfully, stimming can help us manage these feelings without overloading. Often emotions like sadness, anger, or anxiety will prompt stimming as a way to both experience these less pleasant emotions while also keeping our cool.” – The Stimming Checklist
Essentially, a stim is a behavior that provides sensory, social, or emotional regulation to a person. Some of the most familiar (or stereotyped) stims among autistic people are hand flapping, rocking, and head banging – but to stop at those would be extremely limited and inaccurate. The Stimming Checklist has accumulated over 1400 different stims from user submissions (although some are essentially repeats as people submitted different wordings of the same behavior, there are still a lot), just to give you an idea of the diversity and range of stimming behavior! They also give a more detailed description of what stimming is and why people may stim, including the above quote about stimming for emotional regulation.
My most reliable stim is skin picking. It can be embarrassing at times, since my upper arm is dotted with scars and scabs, but in the moment it is less noticeable than something like hand flapping (or running away screaming, lol), so I keep doing it. The sensation of it helps to alleviate almost any kind of tension, and also helps me stay focused on something if my thoughts are wandering (maybe by occupying the part of my brain that would otherwise be distracting me!). For example, if people around me (or even in a movie) are arguing and saying hurtful things, even if they are sarcastic or joking, I will start to pick to help calm down my physical reaction to the emotional turmoil I’m sensing around me. On the other hand, I’ll also pick if I’m bored and can’t do anything because I’m stuck waiting somewhere.
Hand flapping and deep breaths with loud exhales are stress-reducing in the way that pushing down the valve of a pressure cooker reduces the internal pressure – they cut out a lot of tension very rapidly but in a very dramatic manner – and I tend to only stim that way in the privacy of my own home. In class or other lecture-type environments, I write (notes, thoughts, or the alphabet), calculate irrational square roots by hand, draw geometric designs on grids, play games on my phone or laptop, or else generally become unable to sit still or pay attention due to my mind wandering off into some far off land and my physical tension steadily rising.
While stimming behaviors may appear strange or odd on the surface, therefore, it is important to understand that they can play a significant role in the life of an autistic person, as I am hardly a unique or extreme example. Trying to force someone to stop stimming altogether is going to be harmful in the long run: it will deny them access to some of their coping strategies for sensory overwhelm or emotional stress, and force them to spend significant amounts of energy and focus on holding in their stims at the expense of other things.
“If anything, stimming improves my concentration. It’s a release, like sneezing or scratching an itch. Have you ever tried to ignore an itch? What if someone told you it was wrong to scratch yourself to relieve an itch? What would that do for your concentration?” – Cynthia Kim, Musings of an Aspie
However, not all specific stims are healthy, no matter how helpful they may be in the moment. My skin picking certainly falls into this category, as does any other self-injurious stim. In these cases it is worth the effort to find a replacement stim, if at all possible (I haven’t found one for myself yet), and it is emphatically better to consciously redirect towards a positive replacement stim than to simply try to eliminate the damaging one. Without that deliberate replacement, it is likely that an equally unhealthy stim will take over instead (for example, I tried to stop picking my arm last year and ended up creating sores all over my legs. Not helpful at all, that.) So if I ever figure out a good strategy for finding a replacement and making it stick, I’ll be sure to update you…
Do you stim? What do you do and why? Does someone you know? What do you think about it? It’s ok if it seems weird 🙂 – I sometimes think my own stims are weird even though I know why I do them and how it helps me!
Rondel is not exactly a stereotypical picky eater, but he is quite particular when it comes to food, for clear sensory-related reasons. Texture and temperature are probably the most important aspect of a food for him – his favorite foods tend to be either frozen or in the dry-to-crunchy range. So he can be quite happy eating some tortilla chips (sometimes he’ll tolerate them with melted cheese) alongside a bowl of frozen mixed veggies, he loves toast and frozen blueberries for breakfast, he prefers crackers to fig bars, he only enjoys chicken nuggets if the outer coating isn’t at all “mushy”, and he won’t eat any fresh fruit at all (except perhaps melon in the summer or pear in the fall) after having decided his primary previously acceptable fruit (apple) made his mouth feel funny. He will eat noodles and potatoes in moderation, but not consistently. Mexican refried beans and rice are acceptable, but runnier beans and rice dishes (I have a few really good ones) are not. I don’t think he has ever consented to eat soup or oatmeal, and the thought of sweet potato or avocado is enough to make him emotionally upset. Also, having a favorite food to accompany a merely tolerable one seems to help by resetting or calming the tactile receptors in his mouth.
I had never really given much thought to picky eating prior to having kids, because I tend to be a more adventurous eater, but I am realizing now that I have my own sensory quirks. I heavily prefer foods where each bite will have a variety of textures, or where the level of spiciness is enough to leave a burn, or where dedicated chewing may be required – so in a peanut butter sandwich I will use crunchy peanut butter and orange marmalade and toast the bread if at all possible; I attempt to make even normal bland foods more bold by adding extra seasonings (cayenne in the mac and cheese, double the recipe’s amount of every single spice for spice cookies); and I enjoy fairly tough meat but can only rarely handle creamy soup.
The appearance or smell of a food can also cause an overwhelming or challenging sensory reaction. Rondel reacts quite strongly to anything that looks mushy or gooey (like yogurt or banana); I recoil from unevenly bumpy foods (I avoided looking at peeled bananas for at least a year as a child). Rondel can be bothered by the smell of the food other people are eating or even by food that he enjoys eating (which I have only observed in myself during pregnancy – I notice smells quite well but am not usually bothered by them), but we’ve found that lighting a candle on the table makes things significantly better for him.
Interestingly enough, I have also recently noticed that eating painfully spicy food actually helps lower my anxiety levels, and temporarily decreases my reliance on other stims. I’m guessing it is similar for Rondel, and may be part of why he’s been a bit pickier and more wild lately as we are out of both tortilla chips and frozen blueberries. It makes me wish some of his earlier oral stims were still helpful for him – he had been able to translate overt licking of his hands and arms into chewing a wooden necklace, and it made a big difference for him in more stimulating environments especially – but he hasn’t shown much interest in them since this summer. I was beginning to think he would take after my grandmother, who still surreptitiously chews on her hands to stim! And who knows, maybe he will 🙂 in my experience, stims can ebb and flow over time, even if some are more enduring or central.
In the meantime, we’ll keep on freezing our yogurt into creamy cold dots, stocking our house with plenty of whole-grain bread for toast, lighting our candle at dinner, and continuing to try new foods in hope that some of them will cooperate with his unique blend of sensory cravings and aversions!
I shook my hands back and forth like there was a vibrato in my wrists; I made waves through the air like the swirling lines of a dancing ribbon; I watched my fingers sparkle against the sky.
We were at the park; a storm was rolling in and the air was cool and crisp, with a bite to the wind. I was pushing Aubade and Limerick on the swings, feeling like I could fly with them, happy in the weather and the hours we’d been at the park already and the laughter bubbling from them as they swung. I would run towards them as they flew backwards, then dart backwards out of the way just before they could swing forwards and crash into me, and they would laugh so hard they could hardly catch a breath. Aubade would crow, “Three!” and I would push her three times, each one bigger than the last, so the third push would make her erupt with glee. And as the happiness ran through me it ran to my hands, and I chose to let it be instead of shutting it down, and I found as my hands danced in response to my happiness they also made it grow, until I was as completely blissful as I have ever been as far back as I can remember.
Normally, I have my body on some sort of lockdown – I can feel an impulse to move and then before I even have time to process it there is a counter signal to hold still. Normally, the only things that get through this lockdown are the stims that I need to cope with my anxiety or the stims that occur when I’m thinking hard enough about something else that I don’t notice what my body is doing. In other words, I let my body process and express my negative or neutral emotional states (at least to some extent, because I have learned that it is important for my mental health), but I prevent it from feeling my joy.
I’m starting to think, now, that the stimming of my happiness may also be important for my mental health. I have walked the thought paths of depression for so many years, always feeling inadequate, always feeling like I was carrying a nameless secret that would make people reject me if they found out, always shutting down my happiness from reaching my body so that even the moments of the most joy and beauty were tinged with sorrow. But here my body is ready and waiting to give to me the gift of happiness – of taking my happiness and escalating it, elevating it, prolonging it – able to protect me from the darkness of those roads, if only I am willing to let it do so.
I stimmed today, for the pure joy of it. I hope I can feel free and confident enough to do it again.
Every fall and spring the women’s ministry at our church creates a Bible study and hosts a few events for all the women at the church (in addition to the regularly-meeting discipleship small groups). I’ve never attended any of the events before, or been part of the study groups, just because life has been busy, but I have been feeling the need for more structure in my spiritual life to give me direction and motivation, so I went to the first meeting of the year a few weeks ago (leaving Paul to do bedtime with all three kids 😉 )
Large group events like this can be challenging for me for a number of reasons. The first is simply the uncertainty: I had no way of knowing the schedule or plan for the event, nor did I know if anyone I knew well would be attending. The second is the number of people and the accompanying audio and visual (and potentially olfactory) stimulation. I often have significant anxiety or discomfort in church every Sunday because of this factor, and there was no reason to expect it to be different at this event. A third reason is my desire to appear normal and fit in; I really don’t like attention and so I somehow needed to find a way to handle any stress without looking like I was stressed (this is called masking).
Fortunately, as a 29 year-old, I’ve developed a few strategies for coping with these challenges.
To deal with my uncertainty, I thought back to other group events I’ve been to in the past and created a potential outline for the night: mingling, some talking from the front, maybe some music, probably some discussion questions. Other than knowing that mingling always comes first, I figured the schedule would be some modular arrangement of those four activity types, and I would just need to be prepared for all of them. I put my smile on, focused on looking at least near people’s faces when conversing, and thought of some basic questions to bring up that no one would be offended by (like asking about their previous experiences with the women’s ministry at our church – a particularly good icebreaker for the kickoff event for a new semester).
For coping with sensory overload (during both mingling and music) and for staying focused during the presentations from the front, I brought my fidget cube and a pen and paper. I am not really a note-taker, but writing is a fairly effective stim when listening to a speaker; the fidget cube is perfect during discussion and small talk as it is small and discreet, and can even be used during music. My goal for the night was not to pick my skin at all, and thanks to near-constant use of my alternate stims I mostly succeeded! I definitely flapped a lot in the car on my way home to shake off the tense/overloaded feeling though 🙂
[Flapping connects back to the masking issue: hand-flapping has never been a major stim for me because it is just such a big obvious motion and I feel extremely anxious and self-conscious if I do it anywhere anyone can see me. Skin-picking is more typically more subtle (unless I start bleeding…), as is rubbing my fingers together back and forth, and the fidget cube and writing are almost normal. But as I’ve been learning more about the purpose of stimming, which is to help the body cope with sensory processing difficulties, I’ve been trying to give my body opportunities to stim naturally without instantly shutting it down because of my social anxiety. Right now that looks like stepping out of an overwhelming environment and letting my body work through the overload before going back or moving on to something else, and finding a more private space where I can relax in the way that works most efficiently for me. Bluntly, I’ll leave church a few minutes early (like I always have, to pick up the kids), and instead of just walking to their classrooms I’ll let myself flap on the way; it only takes a minute or so and it decreases my inner tension so much.
Also I dislike the word “flap” but that’s what the action is usually called so it’s not really up to me to rename it…]
Anyway, the event was overall a success! Was it exhausting? Yes, of course – but it was also spiritually encouraging. I got to be with other women who love God, talking about Him, reading His word, singing songs of praise and worship to Him, and I even got to have a long-ish chat (far away from the realm of small talk) at the end of the night with an incredible woman who I deeply respect for a number of reasons, leaving me better equipped to pray for her and for family.
While my definition of a challenge may be very different than yours, I think it is true for everyone that it is sometimes very worthwhile to attempt challenging things – and that it is always worthwhile to give yourself the compassion, understanding, and acceptance needed to adequately prepare for and evaluate yourself during those challenging things. These were some of the ways I accepted and made accommodations for my own struggles (instead of telling myself I should just fight through them and be normal) – what are some of your strategies for doing so?
Sometimes we use them deliberately, pointing at an object of interest or gesturing to show how large or small an item is.
Other times they are less intentional – for example, someone may scratch their head or rub their chin while thinking, subtly communicating to others that now is not a good time to interrupt them, or that the pause in the conversation doesn’t mean they aren’t paying attention!
Sometimes we are able to communicate emotions or needs with our hands faster than we are able to share them verbally.
My husband and my mom will both notice when my hands drift to my arms and start picking (a sign of escalating tension or anxiety, typically), and try to address whatever is going on; it would be very difficult for me to break into the flow of the conversation to bring up my anxiety until I was much closer to a meltdown.
Another good example of this is from Rondel the other afternoon, when he saw a bee near Aubade in the kiddie pool and started flapping his hands frantically until I came over and asked what was wrong; he told me later that his hands were telling me that he needed me. The worry of the moment made it difficult for him to access the relevant words, but his hands were able to alert me that something was going on.
Probably my favorite expression of hand communication, however, comes from a moment when Rondel’s hands were demonstrating a thrill of joy.
We were stopped at a red light waiting to turn left out of our neighborhood, and the boys asked me why we weren’t moving. “We’re waiting for the light to turn green,’ I explained, and showed them where to watch for the green light. When it finally turned green, Rondel’s hands went crazy waving around – and a minute later, when he had calmed down, he told me (referring to himself as “you”) that “Your hands were dancing because you were so excited that the light turned green!”
His hands were dancing.
I can’t really think of a more beautiful way to express the unadulterated, uninhibited demonstration of joy and excitement that is Rondel’s happy hand flapping. His hands were communicating to me the rush of pleasure that he was feeling, allowing me to share in it more deeply than a verbal declaration would have accomplished.