If you’re new to this series, I recommend beginning with Part 1.
The words we use to describe our chronic health condition aren’t just words, they are bridges to connect us with others, tools that help us get what we need, and sources of strength to carry on. They can also be markers of shame and walls that separate us from others. This is the third in a series of posts exploring different meanings of the controversial word "disability". I hope it expands how you think about your chronic health condition and helps you feel more confident talking about yourself.
It’s true that the word “disability” has been used to shame and exclude people by labeling them as “abnormal”. However, the word has other meanings, some of which are actually empowering. In this post, I’ll explain what “disability” means in the context of laws, and how it can help you exercise your legal rights.
As you’ve probably noticed, there are millions of people around the world who have historically been excluded from public life due to having different types of bodies, minds, and health conditions that mainstream society considers “abnormal” or “impairments”. Examples include cerebral palsy, blindness, ADHD, HIV/AIDS, autism, schizophrenia, epilepsy, amputations, and Down syndrome. Chronic illnesses such as chronic pain, Lyme, Crohn’s, cancer, ME/CFS, and arthritis also fall into this category.
Collectively, this wide range of bodies and minds are referred to as “disabilities”.
In an effort to counteract exclusion, laws have been passed in the US and other countries that offer certain legal protections to people with disabilities. These include the right to accommodations in school or college to help students learn, the right to accessible public transportation, and the right to not be discriminated against during the hiring process.
These laws don’t always refer to specific conditions, nor do they use phrases such as “special needs”. The word that is used in the text of laws is “disability”. In other words, your rights are guaranteed to you on the basis of having a “disability”.
However, just because laws exist doesn’t mean that they are applied consistently or fairly. You often have to advocate for yourself to get what you need, even when you are legally entitled to receive it. This is why it’s so important to understand the different meanings of the word “disability”, even if you don’t identify with it all the time.
Sometimes, well-meaning adults teach young people that disability is a dirty word, and they replace it with “special needs”, “differently abled”, “handi-capable” or “challenged” because those sound more uplifting than something whose literal definition is “lack of ability”. What these adults may not realize is that those terms are euphemisms and have no meaning in the world of laws. If we avoid the word “disability” and we don’t understand its legal context, we can’t exercise our rights.
This is especially relevant for those of us with chronic illnesses that are not visible or easily apparent. People who would give up their seat on the bus to someone with a leg brace or guide dog, may not budge for us because we "look fine”. It would never occur to a teacher or an employer to ask us if we need any modifications to our assignments because we don’t appear to have any “impairments”. Even when we do make people aware of our chronic illnesses, we are sometimes doubted, questioned, and perceived as faking it.
In this context, the word “disability” is a tool to “legitimize” your needs.
Note: To be clear, I’m not implying that people with visible or apparent disabilities always get what they need. In many instances these folks experience exclusion and discrimination that those of us with non-apparent disabilities do not.
Here’s an example from my own life that illustrates how the word “disability” can make a difference when advocating for your rights:
During the first week of my first job out of college, I was told to make an appointment with the Human Resources office. Since I was new to the formal workforce, I didn’t know what to expect. At the time, the pain in my wrists was so severe that I could barely write more than my name, so I was caught off guard when I arrived for the appointment and was handed forms to fill out (Pro Tip: Whenever you have a meeting or appointment, ask ahead of time about what's going to happen so that you can be prepared and request any accommodations you might need).
Here’s how the conversation went:
Me: Oh, I didn’t realize there would be paperwork. I have problems with my wrists and can’t write. Could I get some help?
Employee: (Look of confusion) Well, you have to fill out these forms if you want to work here.
Me: Yes, I understand that. It’s just that I’m not able to write. Could you help me fill out the forms?
Employee: (Eyebrow cocked in undisguised skepticism) No, I can’t do your paperwork for you.
Me: (Embarrassed) I’m sorry, that’s not what I meant. I meant that I could tell you my responses and you could write them down. I have problems with my wrists, and it’s too painful for me to write.
Employee: (Turning away to do something else) Like I said, I can’t do your paperwork for you.
Me: (Flustered and embarrassed) Then what do I do about the paperwork?
Employee: (In an annoyed tone of voice) I don’t know. I guess you’ll just have to bring it back another time.
At this point, I was confused. I had encountered many barriers since acquiring a disability, but this was not one of them. Anytime I needed to fill out forms at the doctor’s office or my university, the employees were always willing to help me. It had never once been a big deal. What I said next was almost an afterthought, coming from a place of pure disbelief and confusion.
Me: (On the verge of tears) Does this mean that you don’t grant accommodations for having a disability?
There was a pause.
I could see in her face how my words clicked into place. In that moment, her entire demeanor changed and our interaction shifted 180°.
Employee: Oh. Yes, of course I can help you fill out the paperwork.
The annoyance and skepticism disappeared completely. She didn’t appear resentful that I had “used the disability card” on her in some kind of power move. She actually seemed embarrassed. Filling out the forms was as quick and simple as I had predicted, and she spoke to me with genuine warmth throughout the rest of the appointment. I left confused, but relieved.
Looking back, here’s what I think happened:
As an HR professional, she had been trained to accommodate people with disabilities and probably had a genuine desire to do so. However, like many people, her vision of disability was likely limited to the stereotypical ones like blindness, deafness, using a wheelchair. My young, “healthy-looking” body, and “normal-looking” presentation didn’t match this vision. Nor did my vague description of having “problems with my wrists”.
However, as soon as I used the word “disability”, the dots all connected. She graciously made the paperwork process more accessible to me not simply because she legally had to, but also because she actually understood. In this instance, calling on the word “disability” helped me exercise my legal right to accommodations in the workplace.
To those who might say that’s a low-stakes example, I disagree. If the HR employee had refused to help me, I would have had to seek assistance from my coworkers or a personal assistant. The first option requires me to ask a personal favor and share private information with relative strangers and the second costs money. Both require me to do something that is not expected of any other employee. Additionally, both options would have taken more time, which could have delayed my paycheck.
I picked that story because it’s a clear and simple demonstration of how using rights-based
language can make a difference. That being said, it’s important to acknowledge that things don’t always work out so easily. People don’t always grant you your rights when you tell them you have a disability. You may have to fight harder and longer just to get a fraction of what you deserve. Standing up for yourself can also be intimidating, and you may be worried that during so could cause negative repercussions. This may be especially true if you experience discrimination due to another intersecting identity such as race, ethnicity, gender, sexual orientation, socioeconomic class, or religion.
My point is not that using the word “disability” will magically make everything better. My point is that when we shy away from that word and we don’t teach it to our young people, we deny them an important tool. Without the legal language of disability, they can’t access their rights.
Let’s open up our vocabulary and give them a fighting chance.
Learn more about your rights as a person with a disability:
Clear and simple explanations of federal laws around education, traveling, employment, voter accessibility, and more
At-a-glance overview & chart comparing the three major federal laws on disability rights
Great for anyone who wants to do a deeper dive into the Americans with Disabilities Act