Living with Disability: 8 Aspects You Never Thought Of

For those who don’t have a disability or don’t spend much time with anyone who does, it’s hard to get a good grasp of what living with disability is like. Which means it’s also hard to portray it realistically in your writing. Now, you’re not going to get a full picture from one blog article, but I can introduce you to some aspects of disability that you never thought of.

Everyday Life with a Disability:
Details for Writers to Consider

1. Grocery Carts as Walkers

Ever wonder why there are always grocery carts sitting by the handicap spots? Not in a cart return, just sitting in the spot itself. There’s actually a really good reason for that.

Picture this: You have trouble walking. You can walk very short distances on your own, but to walk any farther, you need a walker. When you go to get your groceries, you can either try to carry the groceries with you while using your walker, or you can use the cart as your walker. The second option’s easier, and you can get more groceries that way.

There’s just one problem – how do you return the cart? The cart returns are usually a fair distance from the handicap spots. You can use the cart as a walker to get to the return, but you can’t walk all the way back to your car without a walker. You can’t carry the walker or use it while returning the cart either unless you lift the walker into the cart, and a lot of people with disability can’t do that.

So you leave the cart at the space because, well, what else can you do? You don’t like it, and you’d really rather return it. But when you’re already exhausted from walking around the store, leaving it between the spaces and hoping it stays there is the best option you have.

2. Powered Shopping Carts

I promise that not all of these topics are shopping-related, but, honestly, necessities like grocery shopping can become a major chore (or hurdle) with a disability. And the powered carts help to an extent but also cause problems of their own.

I know people who struggle to walk or stand for any length of time who would rather try to use a regular cart rather than the powered one because…

1. They don’t want to take it away from someone who needs it more.
2. Enough people who don’t need them use them that if you don’t look disabled, you might get yelled at or scolded for using it.
3. You never know how charged the cart is, and if it dies on you in the middle of the store, you actually have to walk more.
4. You can’t reach half the groceries from the cart, and getting up from the cart to reach them can be very difficult.

To give you an example of the last one, imagine sitting in a powered cart and trying to get something out of the coolers in the back of the grocery. You can’t get too close, or you can’t open the door. You can’t be too far away, or you can’t reach the shelves once the door is open. And if you’re at the wrong angle, you may have to lean and stretch around the door to get to the shelves.

And that’s for something on the lower shelves. If it’s on a high shelf, you’re better off standing, opening the door, getting it, and sitting again – assuming you can.

Oh, and if you do, there’s a decent chance someone will yell at you for using the powered cart when you can stand. As if being able to stand automatically means you’re able to walk long distances (and, yes, the route through a grocery store counts as a long distance when it comes to disability).

Long story short, while the powered cart helps in some ways, it has problems of its own.

3. Energy Levels and Choices

One of the least visible aspects of disabilities is energy level. When you’re relatively healthy, your energy levels are pretty unlimited. If you do something that makes you tired, you rest a bit, and then, you’re ready to go again. That’s not true for many disabilities – for them, the energy levels are finite, and they don’t recharge quickly.

Spoon theory and the story of how spoon theory was born are very useful for understanding this, and, truly, if you want to understand living with a disability, reading that story is the best place to start. But for the sake of the article, I will summarize: you wake up each morning with a limited and very defined amount of energy, and everything you do takes energy that you won’t get back until tomorrow. If then.

That means that everything you do becomes a careful choice and a barter. You have to save energy for things that are most important, but even the steps needed to get to those tasks can drain you. Getting cleaned and dressed can exhaust you and require resting for a half hour or an hour before you can do anything else. Making food may sap up so much energy that you’re too sick to eat. Not eating can make you have less energy tomorrow.

Everything has a cost. Even the smallest task can be exhausting, and if you push to use too much energy today, you may have too little to do anything tomorrow.

I know someone with several disabilities, and even going to the grocery store or out to lunch with friends is so exhausting that she will sleep all of the next day – and not on purpose. She will try to get things done and get up, but the minute she sits on the couch, she just loses consciousness. Her body is too tired to stay awake. And when she is awake, she’s in a great deal of pain from the exertion the day before.

4. Hidden Disabilities

I know this has gotten more press in the last few years, but it bears repeating: Not all disabilities are visible. There are a lot of disabilities that you can’t see from looking at someone. Disabilities that affect people of all ages. Ehlers Danlos or MS or Lupus, for example.

Many of those hidden disabilities have the energy cost I just talked about. So you may have a healthy-looking young person, who doesn’t have the energy to do all the things a young person can do. Walking around a box store instead of using an electric cart may sap their energy for several days. Having a steady job can be a struggle because they have to be really careful to save enough energy for work, so if they do, they may not be able to do much else. And that includes not only socializing but cleaning or shopping for themselves.

Sometimes there are added vulnerabilities. If your disability weakens your immune system, a cold could be very dangerous. I know someone with Lupus who had to wear masks to work whenever the immune system was impaired to avoid catching something from coworkers (and, yes, that was years before 2020).

5. Mental Disorders

Society doesn’t think about depression and anxiety and PTSD and such as disabilities, but they are. And like other disabilities, they come in varying strengths. Some people may have them at low enough levels that they wouldn’t qualify to be legally disabled. Others, unfortunately, would.

These are mostly hidden disabilities, but like many other hidden disabilities, they can affect energy levels and also socialization. That’s partially due to the energy problems mentioned above but also due to changing the person’s reactions. They can cause large or unexpected responses to seemingly small input. And without knowing the person well or knowing what’s going on in their minds, the response can also be totally misinterpreted.

For example, Jane sends a message to coworker, John, requesting a meeting but doesn’t give any information other than “we need to talk.” For a person with anxiety, that can trigger a cycle of catastrophic thinking – John starts running through every possible thing he could have done wrong and potential punishments or dire outcomes as a result. That cycle of worrying makes him really tense and abrupt in the meeting (which ends up about something entirely different), and Jane comes out of it thinking the John is arrogant and rude. Not the end of the world (although not necessarily great for John’s career), but that’s just one of many possible examples. They can be more mild or more extreme.

And because of the stigma that still exists around mental disorders, people are unlikely to explain to others so that people can adjust their behavior or expectations.

6. Levels and Duration of Pain

Not all disabilities are physically painful; however, many are. And many are painful all the time. While many people live a generally pain-free life that is occasionally interrupted by injury or illness, many disable people live with a constant level of pain that is occasionally interrupted by higher levels of pain caused by temporary injury or illness. For them, days without pain are rare if not mythological.

Now, there may be people in that situation who complain about it constantly, but that hasn’t been my experience. The people I know who live with that rarely mention their day-to-day pain because it’s such a common part of their everyday lives. It just is. When those people mention pain, it’s extra-strong or in addition to that “normal” pain. Some of them even prefer not to take pain medication except on those occasions because…

• They can’t take it all the time, or the medication itself with hurt their stomaches and livers.
• When it wears off, the return of pain is worse because they got a break from it.
• When they take it, they fall asleep.

Personally, I think that’s because they get so little sleep due to the pain that the lack of it puts them out. That and the fact that dealing with constant pain is a constant energy drain (another reason they have to distribute their energy so carefully).

7. Social Isolation

Over the past year, many people have learned about their own capability and tolerance for isolation, and from my observations, many of those people consider it a kind of torture. I hope those people will read this carefully because what many of us experienced temporarily in 2020 is something many people with disability live with all the time.

Disability can be extremely isolating both physically and socially. And it’s not always by choice. Reasons include…

• Not having the energy to go out or be social (physically or mentally),
• Feeling different and outcast because of the disability,
• Not being able to drive or walk as required by the gathering / activity, and
• Fearing a reaction to stimulus in the social gathering (flashing lights, loud noises or specific pitches, specific smells, etc.).

To you, a flashing light might be an annoyance, but to someone else, it could mean a seizure that leaves a debilitating headache and makes it hard to get home. Just like perfume may smell good to you but could make someone else have a rash, have trouble breathing, or actually start bleeding (It sounds out there, but I have seen it happen.).

And on a more basic level, when getting up and getting dressed is exhausting, you just can’t go out and be social very often. It takes too much energy. Or you think you can and try to, but something unexpected comes up that day that saps your energy and forces you to cancel.

Unfortunately, there are a plethora of reasons that can lead to social isolation – no matter how much the disabled person may wish otherwise.

8. Working

While I’ve touched on this a bit, working is too big of an issue not to mention it directly. From the previous points, you can probably guess many of the reasons someone with disability could have trouble getting or keeping a job. So rather than go over everything, I’m just going to talk about 2 aspects: interviewing and legal limitations.

Interviewing

You don’t have to have a disability to hate interviewing for a job. In fact, it seems fair to say that most if not all people hate it, including the interviewers. It’s incredibly stressful: you have 1 chance to do your best and convince people you’re the person to hire. You have to talk about yourself, your employment history, and your area of expertise with enough skill to make them not only believe in your competency and work ethic but also like you at least a little. On top of that, you have to answer questions that are kind of ridiculous (“Why do want this job?” – “Because I’m not a millionaire, and I need rent money and benefits,” should be a fine answer, but it isn’t.).

Now, picture trying to do that when you have a disability that makes your brain essentially short-circuit when you’re under stress, especially in social situations. One that makes it difficult to speak let alone articulate anything. Never mind that the job you’re interviewing for doesn’t require talking to clients or the public, and that the same disability would actually make you better than usual at focusing and doing the job in question.

You still have to impress the interviewers with skills you don’t actually need for the job to get hired. In a process that is essentially designed to trigger your disability.

There are other disabilities that can interfere with interviewing, as well, but this one is a very clear example of how the interview process can be difficult if not impossible to get through when your disability interferes with it.

Legal Limitations

Yes, businesses are legally required to make “reasonable accommodations” for people with disability so that they can continue working. And it is technically illegal to fire or not hire someone for having a disability.

But that still leaves a lot of leeway.

Let’s start with the term “reasonable.” That’s an adjective, and is, therefore, subjective. What the business considers reasonable, and what you consider reasonable may be very different things. And lawsuits are actually quite expensive. If you don’t have a job, how do you afford a lawsuit? Especially when the judge may not agree with you on what was reasonable either. Unless the business’ actions obviously showed no effort, there’s no guarantee (and there may not be one then).

Plus, having a record of suing a business for not accommodating your disability, well, it may not help you get another job.

There’s also the fact that even with accommodation, most business are going to expect you to work a set amount each week and have specific hours. They kind of have to – if they didn’t need someone to do the tasks you’re responsible for, they wouldn’t be willing to pay you to do it. And if you’re not there regularly to do them, the tasks don’t get done, and the business gets into trouble.

But what if your disability isn’t that predictable? What if you can’t guarantee that you can be there at those set hours? Then, even disability laws probably won’t protect you. Businesses are still allowed to fire you for other things, especially in at-will employment states.

In that scenario, you may be able to get disability support from the government but only if you can get legal disability status. That’s not always easy even if you should qualify, and, depending on where you live, it may not be enough on its own. Now, I’m not an expert on the law, medicine, or any of the other areas that govern that information – I’ve just talked to enough people who’ve gone through the process to know that it’s not a walk in the park and that it can be a factor in the need for even part-time employment.

Why Am I Writing About This?

At first glance, this topic may seem out of place in a writing blog, but it really isn’t. Over the years, I’ve talked a lot about characterization and tried to include articles that can help writers think about facets of people and life that they many not have considered otherwise. And thanks to a recent conversation with a friend, I realized that I have more experience with living with disabilities than many people who don’t live with it themselves.

While I’m not currently disabled, I have dealt with a temporary disability, and I know many people who, unfortunately, deal with a variety of disabilities on a permanent basis. I hope that by sharing some of what I have learned from them, I will make readers more aware and also help writers who are considering including a disabled character in their stories.