Health

Is Chronic Illness a Disability?

When I say that I’m disabled, most people are surprised. If they don’t know me, it’s because they don’t know that I have invisible illnesses. If they do know me, it’s because “they don’t consider me disabled,” which I assume is because I’m not in a wheelchair or using a cane full-time. But since I do consider myself disabled, I’ve gotten an interesting question: is chronic illness a disability?

The short answer is that it depends on the person and the case and the definition of disability. But let’s get into why someone with a chronic illness might consider themselves disabled.

For years, I've considered myself disabled. That brings up the question: Is chronic illness a disability? In this post, I answer that question, including talking about different definitions of disability and how chronic illness might fit them.

Jokes, before we really get into that, I want to share a bit about my health background in case you’re not familiar with it and are wondering whether or not I know anything about this. I have several chronic illnesses and conditions, including rheumatoid arthritis, fibromyalgia, endometriosis, asthma, and POTS. These illnesses affect my joints, muscles, lungs, heart, reproductive organs, and more. I have been in pain since 2001, and on an average day, my pain sits between a 5 and a 7 out of 10. I can’t walk more than a few blocks at a time, I am physically incapable of running due to ankle surgeries, I can’t stand for very long, and I regularly get dizzy and nauseous in hot weather. I have infusions of a chemotherapy medication every 4 months to manage my RA and take around 35 pills a day. I have also had 7 joint surgeries (4 on left ankle, 1 on right, and 2 on a knee).

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What Are Chronic Illnesses and Disabilities?

What makes it a chronic illness? At it’s most simple definition, it’s an illness that is chronic, aka that doesn’t have a cure and you will live with the rest of your life, unless a cure is discovered in the future. One definition of a chronic disease is that it’s “one lasting 3 months or more, by the definition of the U.S. National Center for Health Statistics. Chronic diseases generally cannot be prevented by vaccines or cured by medication, nor do they just disappear” (x). Examples include rheumatoid arthritis, asthma, Crohn’s, multiple sclerosis, type 1 diabetes, and more. I also think that it’s important to think about chronic conditions. To me, this is something that isn’t going away/can’t be cured, but it isn’t an active illness. One example is my ankle condition called tarsal coalition, which essentially involves bone being where it shouldn’t in the ankle because my DNA thinks it should be there. This just is. It’s there, it affects my life, but it isn’t something that any medications can do something about.

What is a disability? The dictionary defines a disability as “a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions or participate in typical daily activities and interactions” (x). From this simple definition, you can see that I would be considered disabled since 2001, as that is when I started experiencing pain and the accompanying difficulties in everyday life. For example, I couldn’t participate in gym class a lot due to pain. While I’m unsure if that makes me disabled from 2001, it definitely places me in the camp of not-abled. Abled can be defined as “capable of unimpaired function” (x). Abled includes people who do not experience mental or physical difficulties, while able-bodied is just people who do not experience physical difficulties. So someone who lives with depression might be able-bodied, but they wouldn’t be abled.

(FYI, I’m using “difficulties” here because I don’t like using the word “disabled” when I’m trying to give you an idea of what not-disabled is to explain why I wasn’t not-disabled, if that makes sense. But, as a whole, I’m very pro using the word “disabled.”)

What’s the social model of disability? This is a super interesting way to define disability, and it’s the one that disability activists generally prefer. “Within the social model, impairment is understood as a state of the body that is non-standard, defined as ‘lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body'” (x). The impairment itself may not be negative to the person who has it (x). For example, loads of people with autism have said that they like being autistic and wouldn’t want to be neurotypical. As such, disability “is the “disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities” (x). I would like to add that mental illnesses or neuroatypical people can also experience the social model of disability, as if an autistic person isn’t hired for a job because they wouldn’t make eye contact, they are being excluded from the mainstream world.

What is the point of defining disability this way, you might ask? “The point of making and emphasizing this distinction is to show how much and sometimes all of what is disabling for individuals who have impaired bodies has to do with physical and/or social arrangements and institutional norms that are themselves alterable” (x). One reason why I don’t go to concerts because I would have to sit the entire time and most people around me would stand and I wouldn’t be able to see anything. If so many restaurants in Boston didn’t have 1 or 2 steps to get inside, wheelchair users would be able to go to them. You get the picture.

This article about the social model of disability is super interesting!

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Is Chronic Illness a Disability?

It depends. If my only chronic illness was asthma, which is very well-controlled as long as I take my meds, then I wouldn’t consider myself disabled. Continuing to look at this example, from the medical model of disability, I wouldn’t be disabled because my asthma doesn’t prevent me from engaging or participating. I do think that it’s important to note that while my asthma (again, asthma alone) wouldn’t necessarily make me disabled, I would not be considered able-bodied. But if we are looking at a case like rheumatoid arthritis, that’s a different story. If someone’s RA prevents them to going to events or participating – such as in gym class – then they might be disabled depending on the extent to which their RA affects their activity.

What about with the social model of disability? What I love about the social model is that it puts the onus on society. If society changed a bit, would someone be considered disabled? From the social model, in my asthma-only example, I would not be disabled because society does not affect what I am able to do based on my asthma. But looking at the RA example, I would be (am). I would be able to go to more events if there were more elevators and sitting spaces, and especially if it wasn’t viewed negatively for me to sit more or if I wasn’t negatively impacted by sitting more, such as at concerts. When it comes to these examples, you can see that whether or not someone with a chronic illness is disabled can depend.

Why don’t people claim the word disabled? As I mentioned, someone who has a chronic illness might not be considered disabled, but they would not be considered able-bodied, either. And part of that may be how they consider themselves. There are plenty of people who know that they’re not able-bodied, but do not want to use the word “disabled.” I think part of this is the negative history around “disabled,” which is why people (with or without a chronic illness) use the phrase “different abilities.” A lot of disability activists – myself included – really dislike that phrase because it is intentionally trying to avoid saying “disabled.” And disabled isn’t a bad word! It’s a statement, a descriptor. I have brown hair and blue eyes, I live in Boston, and I’m disabled. Nothing is wrong with that. I’m not admitting defeat by saying that. But when you go out of your way to say that someone isn’t disabled when they clearly are, you’re saying that you do see something wrong with being disabled. If the person in question prefers a different term, go with that. But as a rule, don’t go out of your way to avoid saying someone isn’t disabled.

Kate, why do you consider yourself disabled? I’ve touched on this a bit in this post, but I want to wrap it up by going over this in a bit more detail. I consider myself disabled because I can’t stand for more than a few minutes at a time and because I can’t walk more than half a mile. I consider myself disabled because, as of 2018, I will never not be in pain and that does and will affect everything I do. I consider myself disabled because I’m on chemotherapy for my arthritis, in addition to taking over 30 pills a day for all of my illnesses. I consider myself disabled because I am unable to work full-time. I consider myself disabled because every time one chronic illness seems to be okay, another one flares. I consider myself disabled because I have to eat large amounts of sodium and drink large amounts of water every day in order to avoid passing out and/or throwing up. Some of these things wouldn’t affect me as much if society was different, such as standing for long periods of time, walking, and not being punished if you are unable to work 40 hours a week, which is the social model of disability. As a whole, between the social and medical models, I am considered disabled either way.

Do you have a chronic illness? Do you consider yourself disabled?

Like this post? Check out:

Chronically Ill Tip: Preparing for Medical Appointments + Freebies To Help, Answering Questions about Being Chronically Ill, Hacks for Living with Chronic Conditions, Resources for the Newly-Diagnosed Chronic Illness Patient

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