Some Finer Details I Wish People Knew About Living with a Disability

I won’t call them small details, because they’re not, but they’re seldom noticed.

The Crip Tax

(NB: the word “crip” is used by the disabled community when referring to things relating to the culture. Yes, disability has its own culture! You may have heard of #CripTheVote, an initiative to get disabled voices heard during election cycles. This is not an invitation for abled people to use the world cr*pple/cr*ppled. I am not here to argue about the validity of language reclamation and I NEVER want to hear “well Anna Holmes said it was cool for me to call disabled people crips.” Note my use of “things relating to the culture”, not people. More on language in a bit.)

What’s the Crip Tax? Have you heard of the Pink Tax, where items and services marketed as being specifically feminine are more expensive than their often needlessly gendered masc counterparts? The Crip Tax is an often invisible, similarly insidious effect where goods and services aimed at disabled people are more expensive than widely marketed items. And often maligned, but more about that later, too.

We already have to spend a fair bit more just to exist. If you’re able-bodied, you probably go to the doctor a couple of times a year, the dentist twice (maybe), an eye doctor every two years. I go to the doctor three times a month, not counting any specialists. That adds up. Medications are another area where the dollars fly out of the wallet seemingly unbidden.

Then you start taking into account things like food sensitivities/allergies, specialized diets, medical equipment, utensils (some people need plastic straws, okay?), even clothing. Some outfits I put on before leaving the house when I’m standing, and then I get into my wheelchair and whoops, suddenly that top became a lot lower cut than I anticipated. Shoes that are ergonomically suited to your feet are an expensive item. What happens when you can only wear shoes that suit your feet? You end up paying through the nose and having only a pair or two at a time. (Also, petition to make orthopedic shoes cuter. If we have to pay so much for them, they should not look like a clown’s church shoes.)

Transportation isn’t cheap, either. I hear a lot of “just use public transit!”, but we in the US love cars more than we love the environment, children, bikers, not having ugly cities, and especially disabled people. There are tons of places buses just can’t go, issues with sidewalks (some places just don’t have ‘em!), and societal expectations that we drive. So we have to buy a car that suits our equipment which is — you guessed it — pricier than standard options, take an Uber (not available in all areas), impose on family and friends, make use of Dial-a-ride, which comes with its own challenges, or stay home and shop on Amazon, which we will be swiftly chastised for doing, as it plays into capitalism’s evil, bloodstained hands.

An Amazon aside

Speaking of the megacorp, I don’t love it, but your disabled friends and family likely rely on it more than they would like. If you want to avoid the crip tax or at least diminish it somewhat, Amazon is likely the only place where you’re going to be able to find certain kinds of medical equipment without selling your heirlooms. It’s one of the few places where you can make an easily shared wishlist for friends and family who want to help. Do I try to shop elsewhere? When I can, yes. Am I forced to use it? More than I want to.

Logistics

One of the realities of living with a disability or chronic illness is that doing stuff takes more time and planning. Just leaving the house is a level of spontenaity I don’t have the ability to achieve anymore. Most people pat themselves down for their wallet, keys, and phone and call it good. For me, even a quick outing necessitates a mental checklist the night before. Am I going to use my wheelchair or am I trying to walk? Am I wearing the right shoes? How is the accessible parking where I’m going? If yes to wheelchair, is my battery charged? Do I have my meds, water and food to take with my meds, is my phone in easy reach in case I need to call for help?

My family is headed to Disneyland in about a month. I am already walking myself through the travel — oh, gods, traveling by plane is stressful for wheelchair users. Wonder why. This is not a minor inconvenience. Imagine you get to your destination and the baggage handlers take a golf club to your kneecaps. You can no longer get around, you’re in physical pain, and the airline is weirdly unbothered by the whole thing. I am planning to take my backup chair so if there’s damage it happens to that instead of my good chair, but that’s a. not an option for everyone and b. not ideal. I can’t self-propel in my manual chair. I am giving up a chunk of my independence for a half a week because airlines can’t get their sh*t together enough not to fling people’s mobility aids.

Before a big Thing, like this trip, I have to plan thoroughly because 1. I can’t guarantee I will not have a bad day or week before the thing, so the earlier the better. 2. accommodations take time. They shouldn’t, because the best we’re getting is someone yeeting my chair around the runway, but they do. I need to know what I need before I need it. 3. Appointments will need to be planned around the Thing. 4. Costs will need to be spread around, because the Crip Tax, as we’ve mentioned, is real. 5. Before my accident and getting sick, I was a planner. Knowing things are taken care of means I rest easier, which means the chances of having good days goes up. 6. COVID safety is still really important to me. Any time we head out, we take a risk, but that doesn’t mean we shouldn’t be mitigating it. I do research ahead of time to make sure we’re doing the safest possible things when traveling.

As a result of this process, though, sometimes I’m already in detail mode while friends and family are still even wrapping their brains around Thing being a thing. It’s important to note that a level of organization goes into even the smallest outing, so big ones, no matter how fun or elective they might be, take much more.

Language Matters

I’m not here to police anybody’s language. Any time I write about this, I get a message like “I can’t even say XYZ now?” and the answer is yes. You can. You can say whatever you’d like. You are not free from the social consequences, however.

The fact of the matter is that we were all raised in an ableist society. All of us. Including disabled people. I think it’s a good idea to reevaluate the words we choose from time to time, and if someone says, hey, that doesn’t make me feel good, especially then.

The other fact is that the language we use around disability shifts. Fifty years ago it was okay to use the word handicapped. We know better now, though, so we do better. In the nineties, special needs was the language du jour. We know better now, so we do better. (Why not special needs, someone always asks? Well, my needs aren’t special. I need healthcare, food, shelter, water, education, a peaceful environment, and yes, a little bit of help sometimes. But everyone does, and saying that my needs are special sets me up as an infantilized other.)

What’s different now is that disabled people are largely shaping the conversation. We weren’t always treated — we were rarely treated — as experts in our own bodies. That’s changing. The disabled community is demanding we be heard, and the internet is a powerful tool in that regard. The National Center on Disability and Journalism has an excellent style guide with specifics.

Well-meaning people make mistakes. Even disabled people flub it up with other disabled people sometimes, because as I said — we all grew up in an extremely ableist society. What’s critical is listening. When the community loudly says “Hey, we prefer identity first language (disabled people) vs person first language (people with a disability),” don’t turn around in your mandatory DEI meetings and demand person first language. Don’t talk over us.

And for the love of all things good, please leave “r*t*rd” in 2000 where it belongs, with those horrible JNCO jeans.

“Who needs a device to pull on their socks? Man, people are just lazy.”

I told you we’d come back to this. When Alexa was first a widespread thing, my delighted sister gave me an Echo Dot with some smart plugs. For someone with no mobility challenges, being able to get up and switch on the lights is a no-brainer. For me, it was a real problem that Alexa solved. I literally sat in dark rooms until my husband came home because I couldn’t get up, and now I can control a lot of my environment with voice commands. (No word yet on if she can be less sassy to me.)

And yet, much of what I heard around me were people saying “I can’t believe people are hooking up their lights to a computer. We’re headed for a Wall-E future.” Which is a problematic statement in and of itself, given that Wall-E depicts humanity as nonfunctional, lazy, and (GASP) overweight, dependent on suspiciously wheelchair-like vehicles. If I had endless time, I would write about how much that movie makes me angry. And it’s not just because I hate Hello, Dolly. Although that’s up there.

Pay attention to the next convenience that’s attacked in the media. Working from home, pre-sliced foods, grocery deliveries, audiobooks — the list goes on. Ask yourself — who is the primary beneficiary of this item or service? Because it probably isn’t you — it’s the person who’s housebound, the person with tremors in their hands, the legally blind person who can’t drive, the person with dyslexia who loves listening to stories. And punt the word lazy from your vocabulary.

Disabled people are routinely denied entry, service, and equality.

Uber and Lyft seem to have major problems with this. Restaurants are not immune. Even libraries, supposedly bastions of welcomeness to all, have their troubles. My friendly local game store (whom I love) forces disabled patrons to enter via the back door, which is often blocked by chairs and tables. When I chatted with them about this, I was told that I was the only disabled customer. Maybe they’d have more if people could actually get in. The response was “they can order using our online service!”

Let’s not even talk about people’s refusal to mask, blocking immunocompromised people from interacting with the world. Let’s not talk about the rhetoric coming out of the CDC director stating that only sick people would die from COVID.

Did you know that in order to become a US citizen you have to pass a physical? Did you know that many other “developed” countries bar immigration for disabled people? Did you know that here in the United States, people who want to keep their SSI benefits functionally cannot marry? In Canada, people are rejected for disability benefits, but are then pushed to consider MAID.

Many people act as though the ADA was the great unifying moment for disabled people in the United States. It was a watershed, yes, but the work is far from done. Eugenics still lurks in medical and legal practices. Many people don’t realize that the ADA isn’t an organization you can call like OSHA. If there’s a violation, you, the disabled person, have to bring a lawsuit. You have to find the time, energy, and resources to fight a legal fight, often against multimillion dollar companies, or your own government.

All this said, the disability community has organized its own means of care. There’s an old joke about disabled folks passing around their last $20, and it’s true — we take care of each other with what little resources we have. Head to the website formerly known as Twitter or the newly opened Bluesky and take a look for mutual aid fundraisers. Write to your representatives about the policy issues. And care for the disabled people in your life. If we get a little weird about planning stuff, it’s because we care. And we have to.