Happy New Year, readers!
January second, time to get back to work! Part of me regrets this. My house has been de-Christmased, and it still seems a little sad/dull. My taste buds are gonna miss things like seasonal cranberry ginger ale, peppermint everything, and Mamaw’s pound cake (may she rest in peace; Mom makes them as treats since they’re so time-intensive). And while I’m glad to get back to “normal” music, I’ll definitely miss my Manheim Steamroller, Celtic Christmas tunes, and contemporary hits I picked up from my niece’s recitals. What can I say? Her teacher knows her stuff, and those kids got moves! (Although my niece is the best–#proudauntie). 😉
At the same time, I do thrive on routine, as an Aspergerian and just as an INFJ in general. I do recognize the need to work, to be productive. And work means the breaks from routine are all the more precious. So here we go.
You might remember I referenced a “serious” and potentially “heavy” post I wanted to hold over from the holidays. Well, this is it. It’s a little complicated and personal, so bear with me.
You might remember I’m currently working up a new story, about Carlotta Murphy (the modern, female Crutchie from Newsies, caught polio in a futuristic plague, kicked its butt. She kinda reminds me of Jacob from the Bible after he wrestled with God, in that like Jacob, Carlotta wrestled. She won, she survived, but she came away more mature, a little more humble, more ready for harder, grittier things and bigger blessings). The thing is, Carlotta is a contemporary of Finola Frost. And as you remember, Finola is my protagonist who was almost euthanized, legally, because she’s blind.
Anyway, I was talking all this up with my writer friend and shop partner M before Christmas, and it came up that a lot of these stories’ conflicts come from my own fear. That is, you all know I have been mortally terrified of being sent to a group home and/or institution since I was in my late teens. I can actually point to the day and time I confessed this to my parents, in the midst of a menses-fueled breakdown (autistic meltdown? Who knows except God. I’ll ask Him someday, if I even care).
In the midst of this convo with M, we examined some possibilities. Possibilities such as:
(1. Finola’s external conflict is so dark, other stakes for other characters like Carlotta won’t work (I already pushed the nuclear option button)
(2. Certain people (those deepest into the “woke” agenda) would accuse me of appropriating the Underground Railroad, the Holocaust, etc. Because I’m brutally honest and can be so with myself. No matter how pretty they look, the HOPE House system in Finola’s novel–they are concentration camps where teens and adults with disabilities are killed for being disabled. And the escape system is an Underground Railroad
2a. You could say, “So what? Dystopian fiction is full of concentration camps, and there are other underground railroads, like for moms and kids escaping abusive husbands.” Yes, that’s true. And no one should be barred from writing anything just because “it really happened once, so now it can’t ever be touched.” But my heart is so tender toward the Shoah and Jewish people in particular, and so careful toward Black people and the Black experience now (tender too, but also careful), that I would hate to be known as that writer who hurt these people and then got “cancelled.”
(3. I could become known as that writer who writes probing, but dark, scary fiction. That’s never been my bag, never been my brand. I’m going for 60-75% percent cacao here, but I’m afraid I went too far and hit 90%. And as someone who tried that once–it’s too bitter to eat.
(4. And this is the one that’s important for me as a disabled person and other disabled people: Keeping Finola’s story as it is, letting Carlotta’s story be a sequel if Finola’s story stands, could keep me in a dark place. A place where my writing, my gift, is fueled by fear. A place where everything I write becomes about “escaping the camp,” “proving I can stay out of the institution.”
4a. Again, so what? Stephen King commits horror and horrific murder in every one of his dang books. Nora Roberts and Danielle Steele and most Christian romance authors write versions of the same romance over and over, right? Arthur Conan Doyle had Sherlock kick Moriarty’s butt how many times? Are you saying that, because of disability alone, disabled people can’t write, speak, or say what they want because otherwise, they’ll become clinically depressed, obsessed with institutions, eager to off themselves, etc.?
The Point of This Self-Exploration and Why it Matters for You and Us
Okay. That challenge is totally, 100% fair. And before I get too spiritual, it’s also not that God came down and said, “Lady, quit writing stories like this; you’re bringing Me down/quit or I’ll show you group home/institution.” (Which, by the way, this is something I was raised with–you know, “Quit or I’ll give you something to cry about?” Note to any parents reading: Drop that phrase from your vocab, okay? It just shows you’re emotionally immature. My dad is still saying versions of it to me, and it drives me bonkers).
I’ve never been here to act as the police, especially about anybody’s creativity. And I’m not here to do that today or ever. But as I digested my friend’s words, thought about my next creative steps, and prayed over my life in general, I realized I was, needed to be, open to learn.
The reality is, people with disabilities have been “put away” throughout history. We’ve been euthanized. We’ve been segregated. We’ve been locked in the Judge Rotenberg Center, the Refuge, the Second Chance Homes, Happy Gardens, whatever stupid name the state or the government gave it. We’ve been accused of behavior problems because we got angry, because we were sad or depressed, because we showed our humanity. That’s never right. And I will speak against it until the cows come home, until the atom bomb explodes, until I’m Raptured outta here.
Took a blink to make sure. Still here.
The reality is, all this still happens. The reality is, we are headed toward HOPE House systems if we aren’t careful. That’s why M cautioned me, don’t gut Finola’s book. Lower the stakes some, but keep what you’ve got for the most part. Show her in a bad place, just maybe don’t strap her to the gurney, maybe don’t have her prepped for a streaming execution. Ya know. Don’t press the nuclear button, but keep the guns level and caution the army, the navy, whoever, “Guys, we’re headed for nukes if we don’t chill out.” Still figuring out how to do that.
The thing is, reality has to exist in tandem with real hope. Reality has to exist alongside possibility. For instance, an old Forbes article does discuss the fact that in 10 years (at the time), disabled people were looking at the possibility of a slide toward re-institutionalization. But, alongside five negative possibilities, that article also gave five positive ones. These included advancements in disability-based technology, major advancements in accessibility, wherein it finally becomes the standard in the U.S., and the “end of the poverty trap” (I can only dream! It’s so unjust to everybody; I can cope better than a lot of people because I have family as a safety net and that family is comfortable. What others go through makes me wanna scream).
In fact, if you’d like to read the entire article, you can do so here: https://www.forbes.com/sites/andrewpulrang/2020/12/29/disability-life-in-ten-years-fears-and-hopes-for-2030/?sh=65994c25249d
Blending Reality, Hope, and Truth
Now, the truth inside the hope is that the positive innovations for disability may take longer to get here than 2030. It may not even be in my lifetime. In 2056–33 short years–I’ll be 70. The Bible teaches that 70 years is a lifespan. Now, I know people live long past that. I’ve got a great-aunt, Aunt J, who is 89 as of September 2022 and still kickin’. But really, anything past 70 is extra icing on the cake, a blessing wrapped in 365 days. So, I don’t know which way the pendulum will swing or if all my type-preaching is gonna do a lot of good. But I do know that reality and hope need another ingredient: truth.
Now, as you all know, spiritually speaking, my truth may not be yours (yes, if you ask me it’s absolute and this whole “my truth, your truth” thing is how humans got into their current mess, but that’s a different discussion). But living with just hope, can make you oblivious (not “blind”) to the hard stuff you have to face to make the world better. Living in just reality can make everything you do, even the creative pursuits that bring you joy, driven by fear or workaholic-ism (as in, I write for joy, but I now recognize that since 18, I’ve written from a place of, “THIS one will make me independent. THIS is the book that makes me the ideal woman, and I’ll never have these fears again, no one will ever hurt me.”) #naive #youngandstupid #hubris
Truth is the missing ingredient, the water in the too-sweet or too-sour lemonade, the splash of milk or vanilla extract in the otherwise dark, rich chocolate. Again, I can’t tell you precisely what the truth is. But if I can exhort the disability community and their allies to hold onto any truths, they are:
(1. All human life has value
(2. Every person has some type and level of ability to do something. Yes, joy, happiness, and inspiration count, but beyond that, as well. Even the person who at face value can do nothing, was created, their genes allowed to come together, for some reason, and just because we don’t understand it, gives us no right to judge.
(3. New and formerly impossible things are happening every single day. To deprive yourself or another human of another day, when it is in your power to give them that, is to cheat in the worst way.
(4. Minds and hearts can change for the better.
(5. Everyone is needed and wanted by someone. If you can’t find that person, or you have been told your community only exists inside of one certain bubble, then that means the minds and hearts around you need to change.
(6. Abuse, in whatever form and given whatever excuse, is never right and should be called out
(7. Just because it’s what’s always been done, doesn’t mean it’s what should be done, or the only thing that can be done. Legality does not equal morality, and morality does not always equal righteousness. (If you couldn’t tell, my moral alignment leans “neutral good,” heh, heh. My goal is to do the right thing regardless, even if I have to break the rules or kick some rear end. Do I always live up to that? No, Heaven have mercy on me, a sinner. But darn it, I do my best).
How People with Disabilities Can Balance the Three and Live in the Light
So, in the concrete, in the real world, what does this look like? How can I, how can we, be true to all three and stop living in fear of the institution, the government machine of euthanasia, whatever (while still communicating that the world’s gotta wake up and shape up or it’s where we’ll end up)? How do we live in hope and truth while still acknowledging that we’re not treated as if we deserve or need to live in the world, and we won’t stop until we are?
Well, I’m still learning. I’ll probably learn more and best as I work with Finola, Carlotta, and whoever their compatriot is (I’m seeing them as part of an all-female, all-disabled trio, with an as-yet unnamed compatriot. I’m thinking in book 3, they’re all like, college/grad students, and they go on a mission to like, find or steal back the Constitution or something). 🙂 But in the concrete and for the rest of us, a few tips:
(1. Dive into your Holy Book. I’m hanging out in the Psalms right now, and trying to discipline myself to read my Bible daily again, because I’m out of the habit. Now, some of this is Aspergerian–I’ve read the whole thing 5 times and have a very good memory, so I tend to get bored or think, “Okay, I see the words on the page, but I’ve been to a bunch of Bible studies and know what’s been teased out, so now what?” But, a good student of any faith should read her Book regardless.
Now, I know, the Bible, Torah, Koran, whatever, can get darn dark, too. That’s okay. Remember, darkness doesn’t have to be scary if it’s tempered with light and truth, which Holy Books are or should be (it depends on who’s teaching you, and if you’ve got a false or legalistic or dark-leaning teacher, get out now). But that said, be cognizant of what you need and when. For instance, if you’re already in a dark place, Psalms and Lamentations might well be your best buddies–but maybe leave the Major Prophets for another time. Try Philippians or Ephesians or the Gospel of John instead.
(2. Watch and read fun stuff. Less news (oh, for goodness’ sakes, less news!), more Friends, Full House, Family Matters, The Middle, whatever. Less Night and Incidents in the Life of a Slave Girl, more Merry Hanukkah or The Yada Yada Prayer Group. Now, this isn’t to say, be disrespectful of other people’s dark times. If you need or want to read about the Holocaust, slavery, colonization, LGBTQ abuse, I won’t tell you not to because I’m not the police. But I do advocate for more balance, just because I haven’t had a whole lot of it, and just because the stories of the marginalized tend to lean a little more heavy than most. Try 2:1–for every 1 heavy, serious thing you engage with, do 2 light ones.
(3. Communicate to yourself and others that the world is good, that you can do stuff, that you are worthy and wanted and needed. I personally suck at this, so it’s partially here to keep me accountable. You can start with something easy, like the old “one gratitude per day” thing. But then get tougher, especially if like me, you find yourself saying stuff like, “I didn’t have to go to PT today” or “I got to have a certain food today.” Those are okay, but they’re kinda too easy (you know, like, “God woke me up this morning?”) Try stuff like, “I danced to Hamilton while no one was watching.” “I snuggled my niece’s new kitten.” (Yes, she got a kitten)! “I beat Dad in trivia by 2 points.”
(4. Know your triggers. For instance, I’m looking at Disability Scoop for updates right now, but not actually reading any, because most of the headlines are repeats of reality (the bad stuff). I want to read disability questions on Quora, because as I told M, “I read the bad stuff to prove to myself, I’m not crazy, I didn’t make up these fears out of my head because I had nothing better to do, my fictional characters are facing real problems.” And that’s okay. But right now, those are triggers and I don’t want to fire the gun. So I don’t.
What are your triggers? Do you have fears like I do? Does your autism make certain existent struggles or phobias worse? Does CP mean it’s hard for you to navigate certain places and you’re sick of forcing yourself to go? Do you, as a person with Down Syndrome, get nervous about Down Syndrome representation on TV because it’s usually inspiration porn? Do certain family members always bring up what’s going to “happen” to you when Mom and Dad aren’t around, or make you feel inadequate?
If you can avoid your triggers yourself, do so. If not, it’s time to self-advocate to a person you trust 100%–“I don’t want to spend time with my sister/Grandma/Cousin Sarah even if it is Thanksgiving or Christmas or Kwanzaa, because they always bring up Down Syndrome” or whatever. If self-advocacy isn’t working or isn’t safe, may I plead with you to get help from clergy, a counselor, a teacher, whoever can help and keep you safe?
(5. Ask for and receive love, or give it to yourself. Jesus said, “Love your neighbor as yourself.” Now, He didn’t mean it like we take it, which is the selfish way, the way that puts ourselves above others and does what makes us happy 100% of the time. But I think a lot of disabled people are dealing with fear, and doubt, and darkness, and whatever, because maybe they haven’t felt or received love. Disabled people get a lot of criticism and correction, even if well meant (i.e., therapy), and we’ll talk about that later. What they don’t get enough of, is positivity and love, even from loving people. My own parents, knowing my love language is words of affirmation, will still tell me, “You don’t need to be praised every day/I’m not stroking your ego” (when this is not what I meant at all).
So, you need to receive love, in healthy ways. Ask for a hug. Ask people for meaningful compliments (not, “You inspire me” or “You did well at therapy” or whatever). Spend time with others who love you, or ask them to. If your family can’t or won’t do this, find the friends and chosen family who will or can. I work on this a lot. Remember, the more love you receive, the more you can give away to your neighbor.
(6. Make goals or resolutions for yourself and only based on what you can control. For instance, every year I used to make goals about living on my own and having a romantic relationship, but guess what? I can’t control that, so not only can’t I make it happen, it’s not a fair goal! I wouldn’t let that happen to a random student with an IEP, so why was I doing it to myself? This time around, I’m focusing on goals like, staying on the healthy track I started last May, improving my vestibular-ocular balance problems through PT at my own pace, focusing more on light and hope, enjoying the Bible, etc.
(7. Know that we as disabled people can be, deserve to be, out in the world. We deserve to be represented. We deserve to be the heroes. Our voices are of value. But it’s not just about, “don’t lock us back up.” It’s also about, “We’re part of the ones you, the state or government or whoever, hurt when you hurt everybody.” It’s about, “We belong on Broadway. We belong in the five-star kitchen, and the Ivy League school, and the real Olympics.” It’s about, “We can protest, but we can also sing, and rap, and speak poetry.” It’s about, “We struggle, but we also triumph. We’ve had our turn to fall, and we still fall. But we also have our turns to get up. And that means we’re there when a WASP, a Black, an LGBTQ, a Jewish, a Buddhist, neighbor falls. And we can help them up.” Show both.
Off to create…and try to stay in the light. Godspeed, readers, until next time.