In this week’s episode, we talk about the evolution of disability terminology, especially the transition from the word handicapped to disabled.

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Hello, this is Chris Young. Thank you for joining me for the fourth episode of “Contemplating Life”

Today we’re going to continue talking about disability issues. In our recent episodes, we discussed what it means to be inspiring and to talk about ableism. Today we begin a two-part series on the language used to describe disability.

I previously mentioned that I was tending to present the standard party-line views on a topic and then explaining how I disagreed with parts of that position. Today we are going to turn things around. Having lived with a disability for 67 years, I haven’t kept up with modern terminology and definitions. So, I’m going to begin by explaining the terminology I’ve used for more than half my life. I’ll explain my reluctance to abandon those old definitions. Then I’ll talk about how I’ve recently come to appreciate newer ways of approaching the definition of disability.

Using the proper language to talk about disability is not just a case of being politically correct. The language that we use to describe disability is a reflection of our attitude about disability and it affects the attitudes of others.

Words have power. Words have meaning. If we are going to wield that power responsibly and sensitively we need to understand the real meaning of the words we use.

Pardon me while I go off on a philosophical tangent and talk about words in general…

What is a word?

It’s an abstraction. It’s a way that allows us to talk about things that are not necessarily present or are themselves abstractions with no physical form.

I just said words are about communication but it goes much deeper than that. We think using words. When we think about something, we use words in an internal monologue. Sometimes, we have feelings or experiences that are beyond words. This not only illustrates the inadequacy of language to communicate these things, but it also limits our ability to reflect upon them, think about them, or analyze their meaning in our lives. We can remember such feelings and experiences and perhaps through such recollection relive them. But when it comes to thinking, we are limited by the inadequacy of words.

People who speak foreign languages find themselves thinking in those languages as well. The only foreign language I ever studied was French and I got terrible grades in it so I’m no expert. As poorly as I performed in French, on rare occasions I find myself recalling a French idiom or phrase that doesn’t have a good English equivalent and I have been able to “think in French”. I can only imagine what it’s like for someone who has a good mastery of more than one language. The ability to contemplate things differently and have a richer experience of understanding must be phenomenal.

Words require consensus. Words have context. When either consensus or context is absent, words become meaningless.

When I say that words are an abstraction subject to consensus and context let me give some examples. If I say to you the word “elephant”, I have imparted to you an image of a large gray animal with treetrunk legs, big floppy ears, and a long prehensile nose. Simply speaking the word “elephant”, doesn’t cause one to appear in front of you. There is nothing special about the sound of the word nor the sequence of letters of its written form that necessarily ties it to that particular creature. It is only by consensus that that sound and that sequence of letters have been assigned as the label for that particular creature.

This idea of consensus is illustrated by the fact that different geographical areas with different cultural traditions have different languages that assign different words to the same object. While the word elephant translated into other languages might sound roughly the same, the English word for a small hopping amphibian is “frog”, in German it’s “frosch”, in Spanish it’s “rana”, in French it’s “la grenouille”, and so on for countless other languages. . Different populations and cultures… different consensus… different words.

Context is also important. The word “frog” can be a hopping reptile or a derogatory term for French people. The elephant in the room can be physical or metaphorical. Context is important.
Again, without consensus and context – words are meaningless. Or at least they should be. Sometimes we apply our own consensus and context and misinterpret words.

The words we assign to animals or objects are highly unlikely to evolve over time. However, the meaning of other words has evolved throughout history as the consensus evolves and as the context of the times evolves.

The words that we use to describe race, gender, and disability are much more likely to evolve as our attitudes about these topics have evolved. For example, the technical name for dark-skinned Africans is the “negro race”. That evolved into the pejorative “n-word” and the attempt to be less offensive with the phrase “colored person”. That phrase however has so many roots in segregation such as “colored only” or “no colored allowed” that it also has a highly negative context. With a sense of pride, people began describing themselves as Black and/or African-American which today are both considered socially acceptable.

The consensus has evolved but context is important as well. It is only through consensus and context that when we say the phrase African-American that we don’t wonder if the person was Caucasian, born in South Africa, and living in Mexico, or perhaps of Middle Eastern Arab descent living in Canada, or a person born in Israel living in Argentina even though technically the label African-American would apply to each of these three.

Given the negative history of the phrase “colored people,” I’m not quite sure why “people of color” is acceptable and doesn’t carry the same stigma. But that’s probably a topic for a different episode. I’m just an old liberal white guy so what do I know?

The language used to describe gender and the use of a variety of pronouns also reflect our evolving views on gender.

The language we use to describe disability has evolved and that’s what we really want to discuss today. This discussion flows right out of last week’s topic of ableism.

Not only have the words that we use to describe disability evolved during my lifetime, but my own views about those words have also evolved significantly in recent months. Let’s explore some definitions of words and the way I learned them growing up.

Typically, I begin with either a disease or a medical condition. While there are technical differences between the two, it generally starts with one or the other of those.

I have a disease. It is a genetic neuromuscular disease called Spinal Muscular Atrophy Type 2. There are probably a dozen or more types of neuromuscular diseases. Other examples of diseases that cause disability include polio, cancer, diabetes, hemophilia, AIDS, and diseases related to blindness/vision impairment or deafness/hearing impairment. Diseases can be genetic or acquired.

Somewhat distinct from diseases are other medical conditions caused by accident or injury. For example, spinal cord injury, traumatic brain injury, or cerebral palsy which is usually caused by lack of oxygen at birth. Technically these would not be considered “diseases”.

The distinction between disease and medical condition is not a hard and fast line. I suppose technically you could say that some diseases cause medical conditions. For example, HIV causes AIDS.

My concept of “disability” is that it is a consequence of a disease or a medical condition. A disability is something that you are literally dis-able to do. In my case, it is primarily a mobility disability. I never had the necessary physical strength to walk or stand. As my disease has progressed, I’ve lost what limited use of my arms that I once had. I have only minimal use of a few fingers.

Other disabled people have paralysis and a lack of sensation or perhaps a lack of muscle control as in cerebral palsy. Some cannot see, hear, or speak.

As I was growing up and for most of my life, the most common word used to describe disabled people was “handicapped”. For various reasons, some of which I don’t understand nor do I agree with, the word “handicapped” has fallen out of favor. Let me define “handicapped” the way I felt it was used when I was younger and it was the commonly accepted terminology. Under these definitions, there was a difference between handicap and disability.

The disability was your basic limitation caused by your disease or medical condition as we described earlier. Your handicap was the interaction between that disability and your environment. When your disability prevents you from doing things that you reasonably want to do, or that society and your environment expect you to be able to do, then it becomes a handicap. The general meaning of handicap is it is some sort of disadvantage that you have.

One of the phrases to which disabled people often object is, “we all have disabilities.” That’s sort of the disability version of the statement, “all lives matter.” However, under the technical definition of disability as I defined it, this statement is true. Here are some examples of disabilities that everyone has:

You can’t fly through the air like Superman, nor do you have his strength, x-ray vision, heat vision, or other superpowers. You can’t stretch like Reed Richards of the Fantastic Four nor turn invisible like Susan Storm. You can’t read minds like Professor X of the X-Men. These are disabilities we all share. While it might be fun to possess the superpowers of our comic book heroes, no one reasonably expects to be able to do those things. Nobody else reasonably expects you to be able to do these things. You don’t live in an environment designed primarily for those who have such abilities. Therefore these “disabilities” don’t present us with a “handicap.”

Under these definitions, it is possible to have a disability that does not handicap you.

Let me give an example. We can call it hypothetical but it’s based on a real person I know who went to the same special education grade school that I went to. Our subject has osteogenesis imperfecta which is more commonly known as brittle bone disease. It is the same disability that advocate Stella Young had that we discussed in episode 1. Like most people with OI, his growth was stunted and he is a Little Person. He also uses a power wheelchair. After I knew him in grade school, he went on to earn a law degree and has a successful practice which includes being a consultant for companies regarding ADA and Section 504 compliance. At one time I’d considered becoming a lawyer and this guy has the career I would have liked to have if I had become a lawyer. He is married. Has a son. Drives his own specially equipped van. His law practice is thriving. While I can’t honestly say what his day-to-day life is like or what challenges he has faced, by my definition he is disabled but he has few if any handicaps.

Through technology, accommodations, and support systems, his disability does not significantly limit his capability to do the things that he wants to do, which society expects him to do, or his environment assumes he can do.

One of the phrases that is often objected to by disabled people is the idea that you can “overcome a disability”. I totally agree that short of a medical cure that removes the underlying cause of the disability, you can’t overcome it. In contrast, you can overcome a handicap.

It bothered me when the word handicap was phased out in favor of disability especially when it comes to government programs. It was my belief that programs should help people with handicaps because that’s something you can do something about. As we discussed last week, no amount of accommodation, support systems, technology, or other benefits short of a medical cure is going to eliminate a disability. But it can make a huge difference in mitigating or even eliminating one’s handicap.

My lawyer acquaintance might be eligible for a variety of government programs many of which he may not need. But because he is disabled he is eligible. In previous legal definitions, he would not be eligible because he is not handicapped.

All of the above is based on my definitions of the words handicapped and disabled and I believe they represent the views of most of the disability community as I was growing up and in my young adult years. But as we’ll see, these definitions have evolved over time and it’s taken me some time to comprehend how they have evolved. Some of my concerns about the transition from handicap to disability have been addressed as I’ve gotten deeper into the subject.

A little over a year ago, famous YouTuber Shane Burcaw who has the same type of SMA as I have, created a video called, “Things you should NEVER say to a disabled person.” The word “never” was in all caps. He and his able wife Hannah post videos several times a week talking about their life as an inter-abled couple. I highly recommend their YouTube channel and I’ll provide a link in the description. I really liked about 90% of what they had to say and I was inspired to create a reaction video of my own also linked here.

Shane spoke out against the use of the word handicap and ever since then, I’ve tried to do research on why the word has not only fallen out of favor but is considered objectionable to many disabled people. I listened carefully to what Shane had to say. I also read the book “Disability Pride” by Ben Mattlin which I referenced in previous episodes. And I researched other online sources. I still believe that there is nothing objectionable about the word handicap as I have defined it. I still insist that there is a distinct difference in meaning between disability and handicap. However, my disappointment or objection to it being phased out of use has somewhat diminished.

Here’s what I’ve learned from my research about the word handicap.

The origin of the word handicap comes from a medieval English game called “hand-in-cap” in which players trade items in the presence of an umpire. According to Wikipedia, the game goes as follows. The umpire decides whether the items are of the same value and if not, what is the difference in value. Both players and the umpire then place forfeit money in a cap. Both players then place a hand in the cap and withdraw it. An open hand means that you agree with the evaluation of the umpire and a closed hand means you disagree. If both players agree, then the assessed value difference is paid, the items are traded, and the umpire gets the forfeit money. If both players disagree, no trade occurs, and the umpire gets the forfeit money. If one player agrees and the other disagrees, there is no trade and the player who agreed gets the forfeit money.

The concept of a neutral third party trying to even things up was extended to handicapped horseracing. If a particular horse was thought to have an undue advantage, officials would determine that it had to carry a specific amount of extra weight to make the race more competitive. In the early 20th century, derived from the idea of handicapped races, the term handicap began to be applied to disabled people because they carried a greater burden.

Shane and others make the claim that the word handicap originates from disabled street beggars who would sit on the sidewalk with their cap in hand begging for money. While I can agree that if someone made the connection between someone with their “hat in hand” and a disabled person, the word handicap might somehow bring forth that image. I specifically used the phrase “hat in hand” because that is the more common way to describe beggars. I don’t believe I ever heard that described as “cap in hand” and if it did, how do you reverse the words to get the phrase “hand in cap” and thus handicap?

I was born in 1955. I went to a school that was described as a school for the handicapped. It was the common word in usage all throughout my school years and much of my adult life. I recently came across an old videotape that I had shot at the 1983 Indiana Governor’s Conference on the Handicapped so I know the word was being used not only in government but in the broader community in the mid-1980s and my guess is several years beyond. There is a link to the video in the description here.

In all of that time, among the extremely few people I encountered who were beginning to prefer disability over handicap, I never once heard the excuse that their objections were based on the idea that it portrays us stereotypically as beggars. Until recently, I never heard any discussion either positive or negative regarding the origin of the word. We were aware of the connection to handicap as it relates to sports but I never heard the origin of the word or why it was used in either sports or disability language.

Shane my man, I respect you and love what you do to bust stereotypes and educate people about disability issues. But I think you’re off the mark when you object to handicap based on its alleged origins regarding beggars. Handicap has other meanings not only in horseracing but in golf, chess, bowling, and possibly other sports. One can easily make the connection between the medieval game and the use of the word in these sports. Why would the word handicap have as its origin the idea of a beggar as it is used in sports?

Handicap does imply a burden or a disadvantage. I can understand why disabled people don’t want to perpetuate the view that they are burdened or that they are a burden. Go back to my rant last week and you’ll see I find nothing objectionable about the idea that a handicap or disability can be burdensome. It’s a burden I endure with as much grace as I can muster but it is a burden nevertheless.

In that video from the Governor’s Conference on the Handicapped from 1983, the word handicap was always used in a positive light but there was other language that today we would consider blatantly ablest. In the opening invocation and in the governor’s keynote address, there were tributes to Indiana State Senator Charles E. Bosma who had recently passed away. He was a fierce advocate for disabled people. However, at a couple of points, he was described as being an advocate for “those less fortunate than us” and “the downtrodden and oppressed.”

If the connection between the word handicap and the idea of bearing a burden perpetuates ablest attitudes, then I can understand why it has been phased out in favor of disability. Note, however, that the transition has not been smooth within the disability community. There have been, and may still be, people who see the word disabled as being synonymous with useless or incapable. They would say that handicapped is an acceptable term even if it does imply a disadvantage because realistically that’s accurate. It’s better to be accurately described as being at a disadvantage than for the implication that you are incapacitated (and by extension worthless).

Obviously, I have no negative feelings about either term.

As I mentioned earlier, part of the reason that I mourn the loss of the word handicap is its use in legal definitions, especially entitlement programs. However, my research has shown that the current legal definitions of disability are written in such a way that they are functional definitions. For example, at one time, the definition of developmental disability was a disability with onset before age 22 and included mental retardation, epilepsy, cerebral palsy, and other similar conditions. This is the same sort of medically based definition of disability that I grew up with.

The new definition of developmental disability also speaks of onset before age 22 but goes on to say that it is a disability that requires a variety of interdisciplinary services and that results in a substantial functional limitation in at least three of the following major life activities: self-care, understanding and use of language, mobility, self-direction, capacity for independent living, and economic self-sufficiency.

Under the old definition, my medical condition of neuromuscular disease did not qualify as DD yet my friend Christopher Lee who had cerebral palsy did qualify. While our medical diagnoses were different, the types of services we needed were very similar. Under the new definition, I have a substantial functional limitation in four of the seven listed areas. They are self-care, mobility, capacity for independent living, and economic self-sufficiency. Thus I qualify for programs for developmentally disabled people.

In other words, the legal definitions of disability are no longer medically based. They are functionally based. The new definition of disability is extremely close to my traditional definition of handicap. So in many ways, I feel better about the transition between the words than I have felt for many years.

Ben Mattlin reports that people have lost ADA accommodation lawsuits even though they appeared to have a disability. The loss was based on the idea that they already had sufficient technology or accommodations to meet their needs. Under my old definitions, the court might have ruled, “You are disabled but not handicapped.”

In my video response to Shane and in other blog posts and essays, I have argued that if handicap is not the correct word to describe the way in which your disability interacts with your environment then we need a different word. But in some ways, that was because I was stuck on a medical model of disability. So… if disability now refers to environmental and social interaction rather than a medical model, do we need a new word for the medically based concept of disability that I have used for years?

I need more research but I think that the common practice is to talk about a social definition of disability (sometimes also called a functional definition of disability) versus a medical definition. If you’re going to add those adjectives, then I’m satisfied that we are on the same page. But I think there are a lot of people, especially my age, and possibly in the general able population, who hear the word disability and think of the medical model. So if the default definition of disability is a social disability or functional disability then we have a lot of education to do to make sure that people really understand that we are talking about interaction with expectations and environment in the same sense that I defined handicapped and not the old medical model.

The consensus has not caught up to the new context.

I have much more to say about language related to disability but we need to wrap up this episode. In next week’s episode of “Contemplating Life”, we’ll talk about the ways in which the general public co-ops, misuses, and abuses disability language in a highly offensive manner.

As always, I welcome your comments.

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