Words matter. I’ve been hearing that phrase a lot lately in the context of today’s social climate, referring to race, religion, ethnicity--any aspect of human interaction. It is true. It’s true because words have power--they can make us cringe when they are ugly and demeaning. They can uplift us when they are empowering and kind. As citizens of the world, when we become educated about issues that affect others and ourselves, our choice of language evolves as does our social consciousness.
We have seen that in the past, words were used that hurt others--groups, races, religions. Sometimes, the use of these words was intentional--meant to belittle others, to categorize them. Sometimes the use of these words was unthinking because they had become just a part of the vernacular; we use them without thinking. But we need to think.
Because that is what humans can do--think--and speak and use language effectively. Because words matter.
As a woman who has been totally blind for 28 years and visually impaired for 30 years before that, I have seen our language in the disability world evolve. When I was a school-age child growing up in the 60s and 70s, kids like me were called “handicapped.”
A little historical perspective on the word handicapped: In 1504 after a brutal war in England, King Henry VII had an idea. He knew that that war had left his country with a great many disabled veterans. He couldn’t imagine that these disabled veterans would be able to hold a job or contribute to society. So he passed some landmark legislation proclaiming that begging in the streets was legal for people with disabilities. So King Henry’s disabled veteran took to the streets, with caps in hand, to beg for money. Thus the term was born. How demeaning!
Donation Card from the early 80's that was sent to a family member from an organization called Friends of the Retarded
I have trouble even writing this next term that has been applied to people with cognitive impairments because it is so odious on every level. But there was a time when individuals with intellectual disabilities were called “retarded.”
In 2009 the “spread the word to end the word” campaign began to raise awareness that this word was not only mean-spirited and hurtful, but inaccurate. (Interestingly, as I spell-checked this article, my computer’s spell-check indicated to me that “retarded” is not in the dictionary; and it didn’t even give me any suggestions! Good for my computer! It’s more evolved than some people.)
People were deaf and mute were called “deaf and dumb.” And let’s not forget the word “cripple” used to describe someone who could not walk normally. (Even well-meaning folks of a certain generation were inured to these labels. It took me about 20 years to get my father-in-law to stop using the word “cripple” to describe people who walked with aids.)
When I was younger, certain words existed in the dictionary, but were not used in vernacular to talk about people with disabilities: Words like “inclusion,” “mainstreaming,” “accommodations,” “neuro different” and “ neurotypical” existed, but nobody used them with any regularity.
Now, of course, the more acceptable term is “a person with a disability.” Personally I don’t love that word either. Any word with the DIS prefix has a negative connotation for me. As a matter of fact, “disability” as defined by the Oxford English Dictionary, means, “ rendered incapable of action or use, incapacitated, taken out of service.” What an insult!
I don’t view myself or others with a disability as incapacitated certainly. We are not incapable of action or use. The OED definition is just inaccurate.
Some people in the disability world use the term “differently abled.” It’s better, but it is kind of a mouthful. Others in this world advocate for “handi-capable.”
For the record, I am a firm believer that I am entitled to refer to myself in any words I choose without being judged by others. So, if another disabled person prefers to be called “differently abled,” I will respect them and refer to them as they wish.
There are those who feel that their disability doesn’t define them; they are a person first. Thus a friend has a “child with autism,” not an “autistic child.” Personally, I don’t get too hung up on the person first language, being blind defines me in the same way as being a Jewish woman, a mother and grandmother. On follow-up phone calls after a meeting, if I have to remind people who I am because they didn’t remember my name, I have no problem saying, “I am the blind woman who was at that conference.” When I speak to kids in schools around the topic of disability awareness, I always use “person first” as a teaching moment.
Really, there is one word that I find particularly disturbing. That word is “tolerance.” How often do we hear “Our children need to learn tolerance” in reference to racial interactions or in interactions with anyone who is “other.” However the connotation of this word has evolved, the dictionary definition is problematic: “Tolerate” is defined as “to allow to be” or “to be done without prohibition” “to be put up with.”
As a white woman, I certainly won’t speak for other races, but as a woman with a disability, I am incensed that others have to “tolerate” me. Am I someone that others have to “put up with”? Do I need permission to be “allowed to be without prohibition”? How insulting!
Here is how the word is used around my house: My husband tolerates the clutter I leave on the counter (barely, but that is another matter). My children tolerate my over protective worrying about my grandchildren. But do I as a disabled woman need to be tolerated? Because of my disability?
My friends and family tolerate my potty mouth, my somewhat neurotic need to be on time. But as a disabled person, do I want to be reduced to being tolerated because of my disability? No and hell no.
What I do want is to be accepted, included, accommodated when necessary, and valued for what I bring to the table. Tolerate my bad habits and my personality quirks but I don’t need you to tolerate my blindness.
In my opinion, that word needs to go the way of “cripple,” and “handicap” and all those other archaic words we find objectionable. Because not only are they objectionable, they are inaccurate.
Don’t “tolerate” me. Value and accept me and view me as a whole person, not through the lens (sorry!) of my disability. Ask me about my life, my accomplishments and, if you are curious, about my blindness because that is a part of my persona. If you think I am struggling, ask me how you can help or accommodate me. Get to know me, like me or not, but don’t ever feel that you need to “tolerate” me.
And now for that term “special needs,” a term thought to have morphed from the special Olympics organization and Special Education Initiative, both begun in the mid 1960’s. This is another term that needs to be retired.
The term “special needs” is a euphemism and that term is defined as “a mild or indirect word or expression substituted for one considered too harsh or blunt when referring to something unpleasant or embarrassing.”
We say someone has “passed away,” a common euphemism for died. We say someone was “let go” instead of fired. We discuss “the birds and the bees” with our kids instead of sex. Some people are uncomfortable with these straightforward words, so they use euphemisms.
Talking about disability shouldn’t make people uncomfortable.
In fact, the term “special needs” has become so ineffective as a euphemism that it has become a dysphemism, something that started as a euphemism and then became so negative in connotation that the term is now worse than the original concept it was meant to “protect” sensitive ears from!
We shouldn’t be negative or vague when discussing disabilities. We should be specific and clear. “Special needs” seems to connote special rights and privileges. But people with disabilities don’t need anything “special”; we need the same rights as all humans--inclusion, opportunity, respect for who we are and what we can offer.
As a blind woman, what I need to obtain these human rights may be different from sighted people. But are my needs any more “special” than those of my non-disabled girlfriend who is technologically challenged and needs her children’s help with her computer? Or my bi-lingual friend who often thinks first of a word in French and has to be reminded how to say it in English? We all need help at times to attain our basic human right of being understood and valued beyond our superficial limitations.
Words matter. They have power. They are the means by which we humans communicate our thoughts, feelings, and ideas. They have the power to hurt and the power to heal. They convey messages both explicitly and implicitly. We all deserve to expect others to call us by the names and designations that make us feel valued and valuable.
We have to move beyond the limits that some words in today’s lexicon put on people with disabilities. Words matter. So do we.
Michelle Friedman is a life coach, disability advocate and children’s book author. Michelle is a career not for profit organization board member for 30 years and is currently the vice chair of the board of Keshet and the development chair of the board of the Institute for Therapy Through the Arts.
Cover Photo: Gizem Vural