I recently saw an "Unpacking" video for ableism, and was somewhat troubled by what was included. While all the points were true, they seemed monumentally disconnected from the everyday experience of ableism -- in all its callous brutality.
While the basic conversation of accessibility, the deeply personal experience of disability, and the statistics of discrimination in employment or media representation are meaningful and necessary, there is a silent - harsher - side to ableism that even the most "woke" people perpetuate constantly.
As someone living with a mother and brother who are disabled, the reality is that ableism isn't just something represented in Hollywood or loaded into un-self-aware hate speech or found in one of many of Trump's crude comments ----- it's people infantializing the disabled, withholding rights or trying to exact force on those who struggle to protect their own will and bodily autonomy. It gets so much more extreme.
It's people making horrific comments in public that you can't even believe are real until you hear and experience it --- not subtlety but demanding to know "what happened" when they see my loved ones with an accessibility device, or complete strangers touching them without permission or insisting they can't walk out to the vehicle alone or grabbing something out of their hands to "help" without asking first.
It's people being AFRAID of mental illness causing physical disability in my youngest brother, obsessed with and controlling of physical illness in my mother, and silencing or invalidating of depression or anxiety or post-traumatic disorders in other members of my family.
It's people being opinionated on others' rights, their experience. Likewise, people forcing unwanted and unasked for help on other people is no different than offering it to anyone. If you ask to hold a purse and someone says no, that's the end of it. If you ask to push a cart for someone and they decline, that's the end of it. If you ask to push a wheelchair for someone, and they decline, that must be the end of it. It doesn't mattered if someone is able-bodied or not, respect their right to physical space and dignity. Always ask first, and if help is undesired, your good deed is done. You need not force anything on another person without their consent.
I can't tell you how often people do something totally inappropriate-- one lady tried forcing a small makeup item from my mother's hand at a store because she wanted to help her "carry it" - no explanation - and then expected praise for being a 'good Samaritan.' She, as all of these individuals in all of these cases, had no concept of how inappropriate their actions are. Many are well intended, but many are also unintentionally scary, invasive, or condescending.
This is not merely a physical phenomenon. Often words are far worse, and more common. I think often of people trying to make a very serious illness about them - how it hurts them to witness my parent or sibling suffer, rather than acknowledging the person dealing with it is the one entitled to the struggle. It's a combination of self-victimization and conversational narcissism, and it's not helpful. A cashier recently compared her struggles with vanity in hair loss to my mother's terminal illness and with excruciating pain. (No. You have my sympathy, but no. Please do not assume how anyone views their disability or accessibility equipment. Often by telling people to "not feel bad" you're bringing up something they might not have otherwise been conscious about, or you condescend a stable self-confidence they might already have.
Another suggested it was more difficult to have an untraditional identity than it is for my mom to suffer so badly she was screaming in agony and can barely walk in suggesting "it could be worse." (What compels people to do this? The hierarchy of oppression as it it matters who has what worse? And frankly, is a social experience worse than death?)
Also: "you're in agony, but people are starving or dying in such-and-such a place."
Yeah well, she's at the end of gastroperesis on top of VEDS, aneurysms, ticking-clock post-dissected aortic splint, bleeding lungs, and about 10,000 other things, so she can't physically eat food either. Her muscles are atrophied and she's chronically malnourished. Is it really a competition? Why would it have to be? Do you actually know anything about these other places you reference anyhow?
Also: "Oh my friend had a friend who had that. She just did such-and-such a miracle cure." or "Pray it away."
I shouldn't have to explain this -- assuming you are an expert on someone else's illness, or implying they are personally culpable for their condition is ill-founded, rude, disrespectful, and tasteless.
Also: "Cheer up." "Smile." "It could be worse, it could have happened when you were younger." "If it makes you feel better, I hate the thought of growing old, I wish I could skip that too." "Most of your kids are old enough at least."
Do you hear yourself when you speak? These are so invalidating, not to mention completely inappropriate and often, cruel.
So what is ableism?
It's telling someone not to be angry. It's telling someone not to grieve. It's telling someone to shut up, in so many different ways I could contribute chapters to a thesaurus of weak euphemisms.
It's telling someone "you're just depressed" instead of validating an excruciating physical experience, as if depression itself isn't life-threatening and horrifying enough.
It's when my mother ---- who is missing a huge portion of her leg and is operating both limbs on a fragile and barely reconstructed blood source, suffers from every bone and joint in her body dislocating and sometimes not being strong enough to be reset, and deals with a variety of often-paralyzingly neurological problems ---- can't help but need help to a vehicle, and a stranger shouts, "Yeah, go grab another beer," and heckled accusations of public drunkenness.
First of all, you're a very confused, arrogantly presumptuous, and misguided individual if you mistake comprehensive injury for imbalance and lack of depth perception. You're cruel for opening your mouth on an impulse that served no one, not even you. Second of all, it's something that was so traumatic she now suffers from agoraphobic inclinations about leaving the house on bad-walking-days. It still stings.
Other times, she's so cooped up and isolated here she can barely breathe, and her claustrophobia and hyper-isolation isn't improved by random people lying on her without permission in overwhelmingly and inappropriately emotive embraces (not from friends, but any of the randoms who come through.) It's making insensitive demands about what she should or should not do.
People scream at her to sit down, to put things down, all thinking it's "helping". They tell her "don't say that, don't talk like that," as if feelings or needs are an intrusive and vulgar child's error.
They expect disproportionate amounts of attention regardless of the challenges she faces in a day. They glare and make comments when she's slow in stores, regardless of the obviousness of her disability equipment.
People have approached our family and made heinous comments in furious anger, demanding we prove why we need a handicap permit, then assuming their apologies are easily accepted because we had a "valid" reason upon noticing accessibility equipment. Even if there was no walker, cane, or wheelchair, why would such behavior ever be okay? No disabled person should have to prove their status to you, the angry parking lot guy Mr. Hates Handicap Spots, or anyone else.
She's been accused of dying for "attention." and "feeding off the system" (she collects no disability, this is literally nothing but a prejudiced assumption and attack on a system I suspect these folks don't understand) and "being dramatic" in presenting limp or falling, completely oblivious of how hard she tries not to show anything or not to look different. It hurts her, and it's pervasive.
People have shouted derogatory comments at my kid brother in a wheelchair, screaming and swearing and flipping him off until he's shaking and trembling and physically collapsing in on himself, because where his disability bus stopped affected traffic or how slow it takes him to self-maneuver out of the way.
He's fearful of strangers so he avoids equipment he desperately needs to avoid attention. He had to switch schools because the bullying and insensitivity was at an all time high and our local faculties were ill-equipped to address their own prejudice. People act AFRAID of him, of disability and mental illness no matter how gentle and harmless it is, and it's the cruelest and most heartbreaking thing in the world.
No matter how media romanticized it, there are groups of people who hate and viciously attack vulnerable members of society. It's no different than the horrid things people say and do to the homeless. It's the very things you can control that make weak-feeling insecure people lash out violently. And I guarantee you that such a bed of thought is behind some of the Trump support.
And ableism is more than physical disability: it's the reaction to mental illness as well.
The response to depression, anxiety, suicide attempts, PTSD ---- so, so stigmatized. You begin to hide yourself away, and your experience becomes a well-kept secret you fight to cover up. Suffering becomes a source of shame. I know that from experience. And you get to hear people's stories, and the way they're treated for bipolar disorder or other mental illness experiences, and you realize how violently pervasive that is. And it is a violence.
Our society allows non-neurotypical and non-able-bodied people to fall through the cracks on a literal social level. I want to say this is the part that "no one talks about", but I feel as though the entirety of the conversation is nonexistent. We need to be conscious in how we treat others. Part of having empathy is understanding how you would feel in another's shoes, not blinding inserting yourself into another's experience for better or for worse. It is the promotion of self-awareness and the need for thoughtful consideration of other people that will change this.
While this could and should be an entire series, I feel it is more important now than ever to write this- with a president that openly bullies people of disabilities, with major activist conversations leave out conversations on disabilities, and with a world that claims to be more socially aware than ever yet chooses people with disabilities as the butt of jokes that used to equally crudely favor other prejudices.
Disabled people socially experience bullying, stigmatization, and prejudice in an able and neurotypical-dominated social world completely incapable of recognizing its own impact on others. The disabled face a strange combination of social erasure and the inability to be anonymous, as well as a lack of access to the basics of modern life and an invasive lack of bodily autonomy from the crudeness of it.
Seeing people as people, and listening when the silenced speak, will go a long way towards changing this. For now, the most immediate change we can personally create is share these voices and stories - and to learn from them ourselves.
