I’m back from vacation, and I’m just not really up to speed. So today, I thought I’d talk about what it’s like to be disabled. There are a lot of misconceptions about disability out there. A lot of them overlap with misconceptions about SES, race, and/or ethnicity.
Let’s start with one, which is that if you’re not absolutely incapacitated all the time, you’re not disabled.
Here’s me on a good day:
Here’s me on a bad day:
The fact that I have good days does not mean that the bad days are somehow less incapacitating.
Another myth: if you’re taking care of yourself properly, you won’t have bad days.
Umm…not taking care of myself will most certainly bring on bad days, however, sometimes, I just have them, and no one knows why – not my doctors, nor me.
Myth three: people with disabilities sit around all day and do nothing.
Some people with disabilities work. Some don’t. Some can’t. People with disabilities who can work are not better than those who can’t. One of the things that disturbs me most about our current (US) capitalist culture is that there’s an incredible lack of inherent human worth and dignity. Damn near everyone I know who has a disability struggles with knowing that in our current system that we purported “don’t pull our weight,” or that whatever contributions we can make, particularly if they are not monetary or commercially related, are somehow unimportant or worthless in comparison to those who can. It’s so ingrained and internalized that many people with disabilities can accept the notion of “It’s okay to be disabled and not contribute” to someone who is just…not themselves.
Point four, which I don’t think is a myth so much as a misconception – that if you’re having a good day and it suddenly turns into a bad one, you’re engaging in attention seeking or somehow inconveniencing others. Reality is that sometimes spoons just disappear or you overestimate how many you really had. In my own experience, I overestimate a lot, because I used to be able to do a lot, and somewhere in my head, I still think that I ought to be able to do X, Y, Z and maybe all I can do that day is X and then go rest. It can be really depressing and embarrassing for the person with the disability. It can even be triggering, because the person with the disability can wonder why their body betrayed them; if they’ve always had their illness, they may wonder why they had to have their condition, so if it happens to someone around you, please try to be sympathetic.
Myth five: “bucking up.”
Bucking up is commonly thrown at people who have invisible disabilities – depression, PTSD, fibromyalgia, and other chronic pain or mental illnesses, as if the problem being in your head is something that you can somehow control with thought instead of with therapy, medication, or other medically appropriate treatment. I cannot express to you in any polite verbiage how much I despise the victim blaming language that many “think yourself well” proponents use. No one with chronic pain or anxiety wants to have that disorder. This does not mean that I am anti-alternative therapies; I am a proponent of using them in conjunction with conventional medical treatments.
And that leads into unsolicited advice. This is usually well-meaning, and can be helpful, but sometimes it’s belittling, sometimes it’s toxic. If the person asks you to knock it off, please do. If the person in question may be a hazard to themselves or others, then it’s time to contact the authorities; short of that, I’d let it drop. Even if you’re right – and you may or may not be, you can’t make someone listen to you.
Finally, I’d like to talk about one of the most classist and ableist things that I’ve seen on the Internet lately, which is the “proper” use of SNAP/EBT/food stamps. Not everyone on food stamps/EBT is disabled, but many people with disabilities do have to rely on those benefits because social security payments are not particularly luxuriant and if said person wants to say, pay utilities and eat, they swallow their pride and use those benefits. There seems to be some sort of very narrow band of the “okay” use of SNAP/EBT that can neither be too “junk” nor too “posh,” – I could rant on why organic food should be for EVERYONE, and perhaps I will another day. This narrow band of “okay foods” are meant to keep the poor and disabled in their place, not to help their health or our national budget. And this is not even tackling food deserts -areas that lack proper grocery stores where people can buy a variety of healthy foods, which are far more prevalent in low-income areas.
I’d like to detour briefly here and talk about classism and food stamps. When I was a new teacher, I became acutely aware that the main difference between me as a single parent teacher with a stable job and the single parents of the children attending my classes was socioeconomic status. And really, that was mostly white privilege. It’s a really nice thought that I somehow worked harder, smarter, or better than someone else, but really? Not really. People in lower SES work their asses off. That is not to say that if you’re a white, middle class person reading this that you somehow don’t work hard, just try to understand that the person who is not doing as well as you economically is working hard as well, and not gaining as much for their efforts as you are. It was painful to me to realize that many of my students only ate well when they were at school, and that food at home was more of a luxury than a given.
So, with those things in mind, let’s talk about the “proper” use of SNAP/EBT. I’ve seen people circulating outrage that people use those benefits to buy convenience foods or junk food. Conversely, I’ve also seen equal outrage about SNAP/EBT being used to be organic food, seafood, steak, or gluten-free items, because they’re expensive.
Many people with disabilities require a special diet.
Let me say that again.
Many people with disabilities require a special diet.
You have no idea at all if the person checking out and buying a gluten-free pizza has a special-needs child at home with say, autism spectrum disorder and celiac disease. Said ASD person perhaps is five and only eats pizza, ice cream, and chicken fingers. Attempts to feed said child other foods induces vomiting in said child due to food texture issues.
No, I am not really making that up hypothetically, I was a special ed teacher and I am the parent of an Aspie. My child, when he was small, would literally puke up foods whose textures he was unfamiliar with or didn’t like. We weren’t on food stamps, but I am saying that this is a Thing that exists and if you think that force feeding the kid something that they will just puke up will somehow “fix” their sensory integration issues, I’d like to call bullshit on your general sense of humanity and empathy. Ahem.
That said, I’ll acknowledge that many people who don’t have someone with an ASD in their life have never seen a sensory integration disorder in action and so they don’t understand how cruel it is to a child (or even an adult) to be force fed something that they find nauseating.
And this is not the only disability that can have dietary needs. Even people who don’t have a specific dietary need can be too ill to cook. And yes, I’d include chronic pain and depression as too ill – sometimes it hurts people to stand, sometimes they just can’t move. If you don’t think that depression is incredibly debilitating, I’d like to leave you with this video, which is a lecture by Stanford University Professor Robert Sapolsky. It’s an hour, but it’s well-worth watching.