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I recently came across <a href="https://www.cnn.com/2024/03/02/opinions/disability-snl-gillis-chappelle-comedy-smith">a CNN opinion piece</a> by writer s.e. smith titled “Jokes about disability aren’t taboo. But here’s who shouldn’t be telling them.” I read on, because my husband and I <a href="https://alsnewstoday.com/columns/weve-developed-dark-sense-humor-living-with-als/">often use humor</a> to deal with the difficulty of <a href="https://alsnewstoday.com/living-with-als-2/">life with ALS</a>, as Todd is paralyzed and I am his full-time caregiver.
Smith quotes Dave Chappelle from his stand-up comedy special “<a href="https://www.netflix.com/cr-en/title/81665820" rel="nofollow">The Dreamer</a>,” on Netflix: “There’s probably a handicap in the back right now ’cause that’s where they make them sit.” And then smith says, “It was a line the audience was apparently supposed to find funny, relying on an outdated and offensive term for disability and a crack about where many people think disabled people belong: Out of sight and out of mind.”
I told Todd about the column and Chapelle’s line. He laughed out loud and thought smith was missing the point. “Chapelle wasn’t expressing his attitude toward people with disabilities, but rather that public spaces are often not that accommodating.” Even in the newer public venues, <a href="https://alsnewstoday.com/columns/outings-family-wheelchair/">accessible seating</a> is typically in the back.
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Todd pointed out that humor is often used to highlight the absurdity of life, which is true, but what grabbed my attention was smith’s perspective that “handicap” is an outdated and offensive term for “disability.” But who decides what language is offensive?
Todd and I came across this controversy five years ago after we posted <a href="https://www.youtube.com/watch?v=AsiD_rX5iXw">a video about accessible vans</a> on our YouTube channel, &#8220;ALS411 – Tips and Tricks for Disabled Living.&#8221;
In the video, I twice reference Todd’s “handicapped-accessible van,” and I talk about “handicapped parking.” At the time, I had no idea there was any controversy around the word. We were just trying to share information that might be helpful to the <a href="https://alsnewstoday.com/forums">ALS community</a>, but someone commented, “We are disabled not handicapped.”
Todd replied, “Interesting that you prefer ‘disabled.’ Neither term has bothered me in the slightest, but if pressed I would say handicapped is a more accurate description. Handicapped implies limited skills — coming from the words &#8220;handy&#8221; (meaning clever or skilled) and &#8220;capped&#8221; (meaning limited). Disabled means the opposite of able, or not able. When we use the word disabled to talk about a thing, we generally mean that it doesn’t work at all. I still have a lot of abilities, but they are certainly limited. So I guess I would prefer the word ‘handicapped.’”
Someone else jumped in with the observation that in the U.K., the term handicapped is archaic and is regarded as somewhat offensive, though they recognized that it was still an acceptable word in other places and didn’t have a problem with it as long as people are well-meaning.
Another person referred to himself as handicapped in his comment sharing the value he found in his rear-entry van.
Our community has a variety of opinions about this issue.
<h3>An etymology</h3>
Ronald Amundson, professor emeritus of philosophy at the University of Hawaiʻi at Hilo, posted an article titled “<a href="https://hilo.hawaii.edu/~ronald/HandicapDefinition.htm">About the Meaning of ‘Handicap</a>.’” In it, he traces the etymology of the word and dispels the myth that it originated from people begging for money with “cap in hand.” As far as he knows, the first use of the word was in 1653, referring to a trading game in which money was put into a cap.
In 1750, the word began to apply to horse races. This broadened to other competitions and is still used today, such as in golf, when a handicap is a benefit given to inferior players. The first use of handicap to designate a mental or physical impairment was in 1915.
“Many people dislike the term because of its association with old-fashioned attitudes towards impairments,&#8221; Amundson writes. &#8220;That’s a perfectly good reason to avoid the term.”
Language changes with time, and the reasons are not always clear. The <a href="https://www.ada.gov/law-and-regs/ada/">Americans with Disabilities Act of 1990</a> may have influenced the preference for the word “disability,” and most states have since eliminated the term “handicapped” in reference to reserved parking spaces and people with disabilities. I don’t know why some people think “disabled” is a better term than “handicap,” but I don’t want my words to be a barrier to people understanding my point.
We didn’t parse the nuance of the word “disabled” when we named our YouTube channel, but I now try to pair it with the word “with” — Todd is a person “with disabilities.” Since posting that video, I’ve avoided using the term “handicap” or even “handicapped-accessible.” Instead, I just use the word “accessible” when referring to seating, vehicles, or parking spaces. And when talking about Todd’s condition, I try to be specific, referring to him as having <a href="https://alsnewstoday.com/what-is-als/">ALS</a> and being paralyzed.
In any case, we should have grace for those with disabilities and all who advocate for them.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Finding the best language to talk about disability

Before my husband, Todd, had <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, our marriage had a normal rhythm to it. He&#8217;d go to work, and I&#8217;d care for our small children, filling their days with activities. Todd and I would reconnect each evening, sharing updates on our respective days. We took our kids on walks and rode bikes. We went to the beach and the park, and we went on vacations. We got together weekly with a small group of other couples from our church, and we had people over for dinner.
After the <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> and as the disease has progressed, we’ve had to say goodbye to many of those things we cherished. Todd had to quit working, and I became his caregiver. <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">Our kids</a> are now teenagers and have their own activities. Todd is paralyzed and uses a noninvasive ventilator. He and I are at home together, all day, every day, and life can feel mundane. Todd sometimes counts the hours until bedtime because he&#8217;s so bored.
Because life will never again be what it used to be, we’ve had to find new ways to bring energy to our marriage. Following are three ways we do that.
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<h3>1. We watch shows together.</h3>
We watch movies and documentaries on the weekends, but TV shows are short and easy to work into our daily routine. We’ve watched all of &#8220;The Office&#8221; and &#8220;Monk.&#8221; &#8220;Frasier&#8221; kept us busy for over a year because it ran for 11 seasons. We’ve since had trouble finding anything we liked, but last weekend we added <a href="https://www.discoveryplus.com/" rel="nofollow">a new streaming service</a> that&#8217;s given us access to many old seasons of HGTV shows, such as &#8220;House Hunters International.&#8221; It’s fun to vicariously explore new places in other countries, although sometimes a little bittersweet.
<h3>2. We compete at The New York Times&#8217; daily Wordle.</h3>
This popular <a href="https://www.nytimes.com/games/wordle/index.html">online puzzle</a> allows six attempts to guess a five-letter word. When a word is played, the letters change color to indicate which ones are in the final answer.
Todd was an analyst in his professional career, so he used his <a href="https://www.youtube.com/watch?v=v2wuJPV3--E">HeadMouse</a> to create an Excel tool with a list of every five-letter word in the English language and filters to include or eliminate letters. He doesn’t use that tool when we compete, but he checks to see how well we played. And he used it to analyze the best words to play.
He used to almost always beat me, so I started playing the same first two words that he typically plays. The other day over breakfast, I told him that Wordle was disappointing.
He said, “Hmm,” and I said no more, holding back a smile as I realized my comment might be influencing his course of play.
Later, after I got him set up on his computer, he shared that he got the Wordle in five tries.
“I got it in three!” It’s a rare day when I get the answer in fewer turns than he does.
He hadn’t played his usual first two words. “You said it was disappointing.”
“Yeah, because it was too easy!”
<h3>3. We visit with other couples.</h3>
For a while, Todd’s lungs didn’t function well enough to carry on much of a conversation. But now that he’s progressed further and requires noninvasive ventilation, he’s found that <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">he doesn’t get winded</a> when he talks with the <a href="https://www.youtube.com/watch?v=yrPq9DeubuI">Astral ventilator</a> on. So it doesn’t add to the stress of our lives, we usually get takeout.
We connect well with the couple who visited us last weekend. They deal with <a href="https://alsnewstoday.com/columns/suffering-connects-compassion/">difficult things in their life, too</a>, although they&#8217;re very different from our problems. We don’t spend time dwelling on that, however, and we have broad-ranging conversations.
Our friend, who&#8217;s an instructor at our local college, discussed her excitement for her upcoming lecture on &#8220;Moby-Dick.&#8221; She loves Herman Melville’s novel, but has had trouble finding others who share her passion.
“I’ve read it,” Todd said. After he stopped working due to ALS, Todd frequently visited my great-uncle in a nursing home to read to him during his final months. “He passed away halfway through &#8216;Moby-Dick,&#8217; so after that, I skipped the whole whaling section and read the end,” Todd said. It was fun to hear he and our friend discuss the beauty they found in the classic novel.
Although our life is not what we imagined, we&#8217;re still finding ways to connect and enjoy our time together.
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Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: disability

Finding the best language to talk about disability

3 ways we bring energy to our marriage while living with ALS