You Give Advocacy a Bad Name: When PWDs are Legitimately Jerks

Hello, readers,

New week, new post, and in some ways, I feel like a new me. I had a birthday Saturday (yes, I’m 37). No, I hope I don’t look it. (Unlike “you don’t look disabled,” I am perfectly okay with people telling me I don’t look 37. In fact, I got carded for having rose wine in my Target cart last week and…yeah, nice. Still don’t care for the taste, though, it was my mom’s). My family gave me a new Kindle for the occasion, I got some new books, and I feel ready to face the rest of the year.

That’s why I’m kind of loathe to talk about today’s topic. But I think we need to, because despite how people with disabilities are so often dismissed and maltreated, there are times the abled community gets the shaft because of some of us. I’m also going to approach this from a place of cooperation. As in, yes, this happens. And (not but):

(1. This is not a license for ableism. In fact, it means:

(2. We all need a refresher on what ableism is and is not

(3. We actually need more freedom to treat disabled people as equal humans/refreshers on what that means

(4. We need the reminder that humans, by their very nature, all have the capacity to be jerks. No one is a perfect innocent, or a member of a perpetually innocent group.

(5. Defining some terms, thinking through our responses, can actually make it easier to deal with our identities, intersectionality, our place in humanity, etc. So that when we’re accused of being too woke, not woke enough, whatever, we can say, “Actually, I’m coming from place A, I see you’re coming from place M, they seem far apart, but there is an intersection here somewhere.”

Define “Jerk”

This is a quickie, and mostly for the benefit of those who might remember a post I wrote a while back. That one was about what to do when a person with a disability is someone you just don’t like, and prone to annoy you. For clarification, remember Celia, the girl from my own life I described? Yeah, you’ll find her in the archives.

What I mean when I describe a PWD as being a jerk is not annoyance. This is not a fellow girl with a disability moving in on my crush or boyfriend with no clue she’s doing it. This is not a fellow disabled person making insensitive comments about my movements because they either have a physical disability too and were just commenting, or they have an intellectual/social disability that disrupts their “filter.” This is not an intellectually disabled adult who, through no fault of their own, slurps their spaghetti at the table, when they have the capacity not to, but were never expected not to. These things are annoyances that can be corrected or let go. It depends on the situation, how well you know the person, and other factors.

On the other hand, there are in fact instances when a PWD can and will be an absolute jerk. For this to happen, I usually think of it this way:

(1. They have to know and/or acknowledge, at some level, that they’re doing it (yes, even someone with an IQ of say, 30 could do this. If a guy with that IQ grabbed my butt and laughed and smirked, esp. if he did it over and over, yeah, he’s a jerk).

(2. It has to be behavior that, all else being equal, would not be disability-related. Example: Being loud and obnoxious when drunk, and not stopping or leaving the area when asked, is jerky no matter who’s doing it. So when a PWD does it, disability doesn’t factor in as a reason they’re doing it.

(3. The person outright uses their disability as an excuse for what they’re doing and verbalizes that, or expects you to put up with that behavior because of the disability. This also counts if a loved one, friend, or caregiver puts you in that position. Or, in cases where you are extremely familiar with this person, they manipulate you based on disability alone, and expect you to give in. Example: I really hate calling little kids jerks, but they’re human, so yeah, it happens. So, if a toddler with CP throws a tantrum, all else being equal, and sees you aren’t giving in, and then starts claiming, for instance, CP pain you know isn’t there, you’re within your rights to call foul.

I came up with this criteria based on the Reddit thread I visited when I got the idea for the post. I bet you know which thread I mean (if you don’t, it’s AITA). Since that thread uses a fairly salty curse word, I just use “jerk.”

The Tricky, Sticky Side of Dealing With Disabled Jerks

Of course, the examples I gave above were somewhat easy. Wheelchair-using, Deaf, or not, a guy who acts drunk and disorderly at a bar is still being a jerk and should leave. Cerebral palsy or not, a toddler throwing a huge, public tantrum and/or using disability to get what they want, should be disciplined (firmly and fairly, not abusively, please). And…(not but):

When a potential jerk is also a member of a marginalized group, any marginalized group, we’ve learned we have to be a little more careful. I’m okay with that, actually. If nothing else, I’m grateful that the 2020s have challenged us to look at what other people go through, how they view the world, and respond with the most empathy we can. Yet I have in fact found that sometimes, this means people get away with things they shouldn’t. Or conversely, it means people who had the best of intentions receive no compassion and no benefit of the doubt. Prime example: my time as an intern English teacher. I never, not for one moment, wanted to hurt any student or colleague. But because I was a WASP, because I was a local, that was assumed to be my motive from minute one, because my fellow teachers were so concerned about their brand of kindness, how they had been told to define racism, sexism, ableism, etc. (Never mind that 95% of the environment was white, WASP, and abled).

So sometimes, dealing with a disabled jerk gets sticky. As in, you can’t just say, “Okay, I’m cutting you off, you need to leave,” or you can’t just pick them up and carry them out of the situation. A lot of the sticky situations happen when the disabled person is also savvy enough to play the ableism card, as seen below (H/T to AITA, Reddit, names and some situations changed to protect the innocent).

Example 1: Viola is a physically disabled high schooler. Her manifestation means she has to miss a good amount of school, which was exacerbated during and after COVID-19. Her school in fact still follows a lot of C-19 protocols concerning sick students and absences. So at one particular recent point, both Viola and several classmates were out sick. This meant these students missed out on being assigned groups for a group project. It is a mixed group of abled and disabled students.

Upon returning to school, Viola approached an abled friend who was not in the mixed/absent group, and demanded to be in her group. The friend said no, and Viola called ableism. The teacher sided with the abled student because the group Viola wanted was full.

Was There Any Ableism Here? No. Remember, ableism is “the preference for abled bodies and minds,” or a prejudice toward people who lack these, which then results in discrimination. Viola’s friend never brought up her disability, nor was it relevant in any context. The group was just full. So by calling ableism, Viola actually made it more difficult for ableism to be defined and dealt with fairly in that classroom. The teacher’s choice to place the absent students together, regardless of ability, was okay. Now, had the teacher had a group of all disabled students and done this, I’d have called foul, absences or not, because that in fact does say, “If you’re absent, you get treated as separate” or “I did this because you were absent,” but the absence wasn’t because of something the students could control. Otherwise, the teacher and students are clean.

Example 2: Kanayah and her brother Devon are ready to leave home at about the same time, but Devon gets into a car accident, sustains permanent disabilities (physical, possible traumatic brain injury) and can no longer use the space he was going to rent. He asks to stay with Kanayah, but is a terrible housemate. He leaves huge, gross food and clothing messes for her to clean up, doesn’t pay his share of the rent, etc. Kanayah wants to kick Devon out, but both he and her family call ableism, partially because everyone else he could stay with has stairs he can’t use, and partially because right now, Devon can’t be left alone.

Ableism?: A little stickier, yes? According to our second criterion above, Devon’s being a jerk, disability or not. But here, his TBI could play a role, so the family needs to make sure it’s not. So:

(1. If the TBI is playing a role, Devon needs treatment, which means he should stay with Kanayah while getting treatment (in my humble opinion and as long as he agrees to work out something, some type of contract or agreement, by which he can improve his behavior as a housemate as best he can). If, however, he refuses to get or cooperate with treatment, he’s still being the jerk.

(2. If there is no TBI or the TBI is not part of the reason for Devon’s behavior, he’s being a jerk under criterion 2, straight up. He and Kanayah could still work something out, but:

(3. Write this in pencil: I do not personally believe Kanayah committed ableism. She’s not saying to her brother, “You can’t stay because you’re disabled” or “I won’t care for you.” She’s saying, “You can’t stay because you’re a lousy housemate/if you’re gonna continue this behavior.” This should be the kind of conversation humans should be able to have with each other, marginalization, 2020s rhetoric, and etc. aside.

Now, the fact that Kanayah is the only available person with an accessible home: is it ableism if she actually kicks Devon out, knowing she is the only accessible person? Again, depends on the TBI factor, where if that plays in, she’s possibly being ableist or at least placing Devon in a bad position. If not, well, she still knows no one else is accessible. So I’m gonna say, ableist unless she offers alternatives to the situation or can get a family member, friend, or clergy to offer alternatives.

Example 3: Carlotta was an only child until her mom remarried, bringing in a dad and a disabled stepsister, Mariksa, who is severely affected and several years younger. Carlotta and Mariksa get along okay, but the age gap and disabilities do affect how well they can sustain a relationship, as do the parents’ attitude. Namely, Mariksa is given leeway Carlotta is not; Mariksa’s needs are met first regardless of whether disability is involved; Carlotta is frequently given guilt trips about Mariksa or made out to be a bigot if she doesn’t do what Mariksa wants. Mariksa is savvy enough to pick up what Mom and Dad put down, even though she might not communicate it on a typical level or always be malicious about it.

Now, Carlotta is ready to leave home, and Mariksa is about 11. Mom and Dad are already making noises that Carlotta should care for Mariksa full time and possibly move Mariksa in with her (it’s not clear whether C will be living on a college campus, but the presumption is no). Mom and Dad are comfortable financially and have not explored other options. C immediately says no, she’s not becoming M’s caregiver, and Mom and Dad call ableism/hate. Carlotta wonders, who’s the jerk and more importantly, was I the jerk?

Ableism?: Well, aside from the fact that everybody needs family counseling…

Yeah, but not like you think.

Who’s being the jerk? Well, in a way, everybody. That is, Carlotta might’ve clarified, “I can’t and won’t do this right now/you need to have an alternative plan in place for Mariksa.” She should’ve said, “I can’t/won’t do this because Reasons A-D, but I will help everyone come up with an alternative whereby Mariksa is safe and happy.”

Mariksa does have the ability to be, and is being, a jerk. See criterion 1–she’s severely affected, but she knows to a point what she’s doing, and has participated for years. Now, if given time to cool down and express her feelings, she came to Carlotta and said, “I trust you to take care of me, would you reconsider,” that would be different. But if Mariksa follows her parents’ lead and makes it about guilt and hate, yeah, she’s being a jerk.

However, the real jerks here are Mom and Dad. Disability or not, and regardless of manifestation, no parent has any right to accuse their child of something like ableism, racism, or any other kind of hatred without solid evidence, which the parents do not have. Mom and Dad are also jerks because they’ve treated Carlotta as second-class for years and guilt-tripped her over Mariksa. Arguably worse, they’ve been jerks to Mariksa for teaching her, being disabled means you always get your way and can bully people who question your “right” to your own way. Since Carlotta is a stepchild on one side, this is arguably worse and arguably traumatizing to both sisters. The parents have participated in, and are encouraging, ableism based on holding Mariksa to a lower standard, and ableism as viewed by outsiders (because if they force Carlotta to be a caregiver, and then she feels resentful, they can still call ableism on her).

Example 4: Felipe is a college-age, intellectually disabled young man living with his parents in a shared housing arrangement (condos, apartment with a green space, whatever). He hangs out in public spaces with same-age, abled neighbors, and this is okay. But the abled neighbors are disturbed because Felipe consistently “crashes” events to which he wasn’t invited (family barbecues, parties with circles whose members are not familiar, etc.) He will also hang out in neighbors’ yards when they don’t want/need company or aren’t around, which is a problem because Felipe legit needs supervision. The neighbors bring this up and Felipe’s parents call ableism. They also claim Felipe should be allowed to party crash even if, as often happens, he becomes disruptive.

Ableism?: Not on the part of the neighbors. Now, Felipe is not necessarily being a jerk here. Yes, he does fall under criterion 2, in that party crashing and disruption is disruptive no matter who does it. But since his intellectual capacity is unclear, he may not know what he’s doing. If he does, that’s obnoxious and Felipe is being a jerk just like any other college-age crasher. If not, then no. But nor are the neighbors jerks. They brought this up directly to Felipe’s parents, couched as, “We are legit concerned for Felipe’s safety and are okay with him hanging out, but…” Now, had they left a nasty email, text, phone message, or something, yeah, that’s ableism and major butthole behavior. But they didn’t.

As in the example above, it’s the parents who come closest to ableism, again by holding Felipe to a low standard and insisting he get his own way. Again, this comes down to something all humans should be able to communicate about on whatever level. That is, if you’re gonna share space, you’ve gotta make sure everybody’s clear on the rules. Now, those rules must be fair and equal–no segregation, no “special” rules for certain groups, etc. But shared space means shared community, and that means being a decent human to all other humans.

Example 5: This one is going to lead into our next post, where I’m going to talk more about autistic people in particular, specifically the fact that even in 2023, they continue to get no respect. H/T again to Reddit AITA.

Harper is the able-bodied sister of an autistic brother, Jayden. Throughout Harper’s life, Jayden’s needs have always come first, and she’s been understanding because Jayden is severely affected, to the point of having meltdowns every time their single mother leaves. But now Harper is 18 and it’s graduation night. Mom got a trusted, licensed caregiver for Jayden for the night.

Mom never showed up at graduation. She claimed Jayden had a meltdown as she was walking out the door and she chose to stay. Harper railed that Jayden has ruined her entire life and now claims she is no longer her mother’s daughter. Outsiders have jumped on this, claiming Jayden and autistic people in general are life-ruiners, the mom is a life-ruiner, and Harper was completely justified.

Ableism?: Guys. Really?

Okay, so that’s a bit of a cheat, since Jayden wasn’t the jerk here (I’m gonna say, if he can’t cope without Mom, he also can’t/doesn’t possess capacity to hurt Harper, as far as is known). But this is a case of, the presence of disability being used to turn the PWD into a jerk for existing. It’s also a case of Harper being a jerk to her mom (handling her understandable emotions badly, burning a bridge she can’t rebuild) and the mom being a jerk to Harper (what kind of help did Jayden ever get? Was Harper ever put first, even when she needed to be? How many promises did Mom renege on because of Jayden)? In a nutshell, it’s another horrible case of able-bodied people not knowing how to interact with and react to a disabled person, nor bothering to learn. And that’s where we’re gonna pick up next time.

My goal has never been to paint PWDs as jerks. Like all humans, we have the capacity to be so, myself included. In fact, there are times I say, “Please don’t excuse me via Asperger’s or hormones, I was a jerk and I’m sorry.” And there are times I say, “I was a jerk, I don’t care, I don’t like you right now, come back and talk to me in 12-36 hours.” There are even times (usually with the ableist) where I’ll say, even to God, “I was a jerk and I’m not even sorry.”

I only wrote this post to show that, to educate the abled and disabled communities on different responses, and to assure the abled community, we’re not against you. We’re with you. We know we’re not always innocent, we’re not always the ones who get the shaft. We know you do, too. And I personally am willing to deal with that. And to my fellow PWDs who are constant jerks:

Yeah, I get it. The world can be frustrating as heck on its own. And for us, it’s already crappy some days, because it just isn’t built for us. When that happens, we can say/communicate, “I need help,” “You’re the jerk,” “I’m having a bad day,” whatever. That’s okay. Being a jerk on purpose is not. Instead, just go forth and live your life as considerately as possible.

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