Well, February has certainly gotten off to a busy start! Between Valentine’s Day, my mom’s birthday (happy birthday and much love, Mom)!, and a brand new writing course, I’ve had my hands full. Plus, I’ve sort of rediscovered Tumblr, as well as plenty of disability advocacy insights. I’ve been posting there, although not so much about disability. Tumblr is, I’ve found, pretty creative writing-friendly.
Now as you know, Tumblr and other social media sites have some insights into disability advocacy I don’t agree with (e.g., views on Covid-19-related masking, political views–I searched “disabled conservative,” nothing is there–and a view from some that nobody ever fakes disability and that people who claim disability or mental illness cannot/should not ever be held responsible for any of their actions). However, I have learned plenty from my new forays. My insights have expanded. I have found myself challenged and even convicted because of other people with disabilities who have been on the site longer than I, who have different disabilities than I do.
A lot of these challenges and convictions come from challenges based on my personal schema, the way I was taught to “handle” my CP and adult-diagnosed Asperger’s/autism. Some of these challenges are “smaller” than others. For instance, I’m still deciding whether to use “Asperger’s” or “autism” in relation to my own diagnosis because Hans Asperger had ties to the Nazi movement and naturally, a lot of autistics distance themselves from that–but the thing is, not all do, so, should I? Some autistics still use the term, and some don’t, based on the fact it’s no longer considered part of autism, so should I? You see where it can get confusing.
And then, other challenges are bigger. They are more convicting, as in, they have made me think, “Wow. I’ve been committing sins against my fellow disabled people and I need to step way back and reassess how I interact with disability based on that.”
The Big Challenges and Why They Matter
I’m gonna start with my own examples, but add a few others, given that other disabled, or perhaps abled, people may encounter some growth in their quest to be authentic allies for persons with disabilities.
Challenge 1: Maturity
The dictionary doesn’t help much with the definition of “maturity,” in that it says “the state of being mature” (yeah, really)? “Mature” similarly means something like, “having reached the most advanced stage in a process or fully grown.” But when people actually use the words “maturity” or “mature,” we’re using it more colloquially. We mean something like, “acting like an adult.” We mean, “[being] well-developed emotionally.”
And these colloquial definitions of maturity is how abled people measure the worth of people with disabilities.
If a PWD is considered emotionally mature, they “earn” a “high-functioning” label. They “earn” the right to be in “regular” classrooms or college. They “earn” the right to have jobs. They “earn” the right to some degree of independent living (I say “some degree” because I was called mature my whole life and well, you know where that went).
But the minute a PWD exhibits some degree of what ableds call “emotional immaturity,” a “behavior,” their worthiness of any of the above is questioned. This often happens with autistics or intellectually disabled people, but no one is exempt. With my “mild” CP and Asperger’s, if I had a period and a hormonal meltdown, I was told:
-I’m not sure you’re ready for college
-[X person who believed in my maturity] doesn’t see these tantrums you throw” (read: your maturity, your capability, is a lie, you are a toddler in a grown body)
-(Upon pushing back against frustration expressed at me when Mom was helping me organize stuff for a prospective job) “You keep this up and no one will work with you!”
-(Upon saying, very recently, that I was sick of being told I was misinterpreting, misreading, or misunderstanding everything, or being dramatic, or not having a complete picture when I related *my own experiences*: “Then stop doing it!”
And yet, I am still fortunate, because as much as this has hurt, it hasn’t resulted in the “taking” of things it has for other persons with different disabilities. Go back and look up the case of Jenny Hatch, a young woman who had to fight against her parents’ guardianship at 29, because she, a woman with Down Syndrome, had a bicycling accident. Read Tumblr blogger archerjay2019’s poem on the maturity of intellectually disabled people for a better insight than I could ever give you. (You can also find a post on Jenny Hatch courtesy of Tumblr’s profileforliberty).
ArcherJay 2019’s poem, in particular, punched me in the gut. Not because it’s good, although it is, it’s awesome. But more because it went against everything I thought I knew, everything I’d been taught, everything I’d claimed as my belief. Because yeah, I could blame my parents and my schools and my upbringing. I could say, “My childhood schema sucked because it taught me, ‘You better act ‘mature’ or we’ll lump you in with the special ed kids.'” Because it sucked, and it did teach me that. I could say, “All the disabled kids I was exposed to from K-12 were labeled as mentally disabled and/or ’emotionally/behaviorally disturbed,’ (what a load of caca-doody), and I was terrified of being seen as just like them.” Which is true.
But once you grow up, you take responsibility for your actions, your beliefs, what’s in your own head. And what I found out was, yeah, maybe somebody else planted those seeds. Maybe other experiences watered them and turned them into nasty little Audrey IIs. But darn it, I was the one who supplied the blood. And as an advocate, I won’t do that anymore. Who the flying, freaking French frog cares if an intellectually disabled person or autistic person or whoever is “immature?” By whose standards? Doctors? Therapists? Teachers? Social workers?
Well, excuse you, who died and made you God? The position’s filled and you’re not Him! Neither am I, so guess what? Not my business! And yes, if an intellectually disabled, autistic, whatever, person is a danger to self or others, that’s one thing, but we can and should deal with that, without the abuse and shame we’ve been using, including using their “immaturity” as a reason to say, “You can’t live your own life.”
Let me tell y’all something. Maturity aside–and I am mature by definition/standards–left up to me, I’d have a room plastered in Broadway musical playbills. I’d own a Ravenclaw robe, a wand that “chose” me, ceramic Disney princess statues, and at least three Squishmallows (the calico cat, the hot chocolate, and the gingerbread girl). Oh, and at least three of the newer American Girl dolls–Rebecca, Cecile, and Marie-Grace.
Challenge 2: Hygiene
You think maturity was a bugaboo? Try hygiene. That one was a challenge for me, for sure. Because see, I am and have always been, kind of a hygiene snob. Not to Adrian Monk levels; I am aware that sometimes, you’re gonna break a nail. And I firmly believe that, if not for cerebral palsy, I’d have been a mild-to-moderate tomboy, just because girls who primped and squealed and spent all their money on clothes, and looked down on those who didn’t, were never my people. But I hate camping partially because I always wake up feeling grimy. I’m drawn to Cinderella-type stories in part because of the scene where the heroine gets to clean up and see who she really is, physically and emotionally. One of my worst fears connected to institutionalization involves being forced into incontinence/wearing diapers I do not need. People who do this to others, people who force others to be dirty to the point of trauma…you’re the kind of people that Jesus would’ve called me a Daughter of Thunder over, ’cause I woulda wanted to go Avenging Disciple all over your hiney. Some autistics are sensory seekers who don’t mind touching sticky or gooey stuff; I’m a sensory avoider. Get it off. If I cook or bake, if I eat gooey chocolate or barbecue chicken with lots of sauce (the saucier the better), or marinara-soaked lasagna (mmm), I’m gonna say, “Loved it, but excuse me, gotta wash my hands.”
So I was a bit taken aback when I found a lot of posts on Tumblr from physically disabled people calling for the destigmatizing of hygiene. As in, people admitting that sometimes they smell awful–and they go out in public anyway. Sometimes they just can’t handle bathing or showering, or even wet wipes, either from a sensory standpoint or because moving hurts. Sometimes, because of scars or amputations or fat that they did not “purposely put there,” their bodies “look gross,” and can we destigmatize that?
I tell you. If there was ever a time to say, “Oh, Jesus. I’m sorry. I didn’t know. No, I did know, I just chose to be a snob. Forgive me, a sinner.”
Because yeah. Again. I could blame the fact that in my house it was, “You’ve got the capability and resources to be clean, use ’em.” I could blame the fact that the TV, movies, and other media being piped into my house presents lack of hygiene as something you choose, and then only if you’re fat, which again is all your fault (and it’s totally not. My lowest weight as an adult was 116. My highest was 181. I’m now comfortably between those two extremes. And yeah, 181 was partly because of the Frappuccinos, the chocolate almonds, the morning buns, the pasta, the sushi, I put in my mouth. And (not but) it was also because of my sensory needs, my CP limitations. I wasn’t disabled because I was fat. I was fat because of disability, and I still deserved consideration and respect, as everybody does). I could blame the fear of incontinence. I could blame my schema.
But if I’m just looking at my responsibility for what’s in my own heart, my own head, my own soul…I wasn’t responsible toward my fellow disabled humans. There were stories and situations I didn’t know. Now, I grew up in a very “tough love” house and that’s hard to shake. Harder than I think even I know. So if I personally know you, and know you aren’t trying, hygiene-wise, maturity-wise, or whatever, I may still verbally kick your butt. Failing that, though…
Failing that…I’ll be the girl with a basket holding wet wipes, your favorite lotion scent, whatever you need. And we can share some sweets together. We can commiserate because diet culture is in fact ableist, or if you don’t agree with that, at least stupid and potentially harmful. We’ll worry about water intake and salads and grilled chicken tomorrow.
Challenge 3: Intelligence
Not going to spend as much time here, because I’ve talked about it before. I also didn’t find as much about it on Tumblr. But it is the one that Jesus takes His big ol’ sandals and nudges my toes the most about, because I do cherish my intelligence. I don’t mean it as a pride thing, I just love to learn. Thing is, that same intelligence has been weaponized against me before (remember, “If you can read, why can’t you do algebra and geometry?”) It’s been the thing that stood between me and “special education,” “special placement,” blah, blah, blah. It’s been the thing that made others say, “But you’re not disabled like that/them.” I still catch myself saying that last one, usually to people who still think in those terms (for whom what we talk about here is considered a little too close to “woke.”)
But remember, intelligence is perhaps the biggest and most common standard of normalcy used against people with disabilities. The majority, especially abled people, use it to leave out intellectually disabled people, autistics, people with learning disabilities that are not classically considered cognitive (e.g., dyslexia, dyscalculia), etc. Disabled people use intelligence as a reason to continue their infighting, their hierarchy-building, their inner segregating. Intelligence or perceived lack thereof drives lateral ableism, and I am so guilty it ain’t even funny (I did that on purpose). I have to confess and try to do better on the regular.
After the Challenges and Conviction, What?
Indeed, what do we do? After we’ve been challenged, after we’ve resolved to do better, what do we do? After all, I can’t necessarily track down every Tumblr user, every former classmate, every participant on My 600-Lb Life, and make amends. And not all my readers have my same faith or way of dealing with their confessions or convictions.
But I can exercise patience and grace with the people closest to me who fit these challenges and, by virtue of their personalities and how they choose to deal with their challenges, drive me up a wall
But I can stop using “I’m not intellectually disabled/like this or that person” as justification for why I need or deserve to live in the wider world
But I can be intelligent because I love to learn, not as a means of self-protection or preservation
But I can encourage myself and others to move past a schema, a worldview, where our greatest fears involve becoming “like” our most vulnerable people–because we begin treating our most vulnerable with more respect, with authentic compassion (not pitying, condescending compassion)
But I can be mature and physically clean because they are within my scope of ability, not because there are “consequences” if I “fail.” I can call for grace for those who “fail,” like not calling it failure or treating it as such. I can call for the realization that if we as a society don’t get to a place of being willing to get each other’s food and water, shampoo each other’s hair, wash each other’s dirt and wounds, wipe each other’s tears, we’re not gonna make it.
What are your challenges, the standards you’ve accepted? I’m not saying those standards are wrong or should be abandoned, but maybe…who might they be leaving out? And…
What can you do?
Never mind the fact that when you go out in public there are PLENTY of TAB individuals who look like they are in dire need of a shower and go out in public wearing pyjamas.
I agree that some PWDs need some extra guidance on basic grooming ( brushed teeth combed hair deodorant) but they don’t need to look like they’re attending the Governors Ball every time they walk out the door
Exactly my point! Just as there are literally tons of abled adults who make foolish choices every day or who engage in—wait for it—behavior, that shows they do not care about “life skills” they are capable of executing. Yet, a disabled person has legitimate struggles, or they choose to engage in a constructive interest that is otherwise atypical, and the solution is…question their agency, limit their interactions to persons with similar (arbitrary) IQ scores and “supervisors,” and use their interests and preferred items, including THEIR OWN PROPERTY, as rewards for compliance?
Dylan Rothbein is a disabled conservative who is pro life and uses the term “Aspergers” for herself. Dylan has learning and physical disabilities. Here’s her websites
View at Medium.com
If you want to see conservative views….