Let's Not Make People Afraid To Open Their Mouths
04/11/2013 - 14:13
Beth Steinberg
Beth Steinberg

Special needs. Developmental delay. Cognitive disabilities. Disabled. Learning disabilities. Retarded. Autistic. Mentally challenged. Slow. Special. Blessed. Pure of soul.

Language is power. From the first words we form as toddlers, making our needs and wants known, to the daily information we share online, from 140 characters on Twitter and beyond, language has meaning and weight. The better we can say it, the stronger our positions, our beliefs and our passions, whatever they are.

Language can also constrict, preventing the honest sharing of our thoughts, especially if we fear putting our collective feet in our mouths. In these politically-correct times, language has become increasingly dangerous, as descriptive terms and labels change at a pace that many find hard to keep up with, let alone understand and accept. Heeding the dictates of the language police is not only recommended, it’s required, or you’ll suffer the ignominy of using the wrong term.

A colleague who’s involved in the development of camp programs for children and teens with disabilities in the United States had an uncomfortable moment recently when she used the wrong term in a discussion about people with disabilities. After being chastised by a fellow advocate, she commented to me, “I want to use the right language, of course, but I don’t want to feel like I can’t speak for fear that I’ll offend.” Even worse, as a parent of children who do not have disabilities, she already felt tentative when talking about it, wondering if she had the right to express her opinion. Now, she's just uncomfortable, worried that she'll do it again, use incorrect language.

I know how she feels. Recently, I was summarily informed by a colleague that there had been a language shift in the field of disability. “Didn’t you know, that it’s people with disabilities now, and not people with special needs?” she told me. I adjusted my speech right away, but was put off the more I thought about it. What word is truly right, and who gets to decide what’s in vogue or not?

Ever since my youngest, who has Down syndrome and autism, was born, I’ve felt the need to be blunt about how I talk the talk of disability, especially when it comes to developmental issues. Take the word retarded. According to my Google dictionary, retarded means “less advanced in mental, physical, or social development than is usual for one's age.” Okay, check. I also like this use of the word retard, when referring to bread baking as in “to slow down...[as in] a long, cool rest for the dough, during which it develops flavor and gluten.” Interesting. Needs time to develop in all sorts of ways. Checkmate.

Point is, "retarded" isn’t an evil term, it’s a descriptive term. When used pejoratively, of course, it isn’t acceptable, any more than "Mongoloid" was when it was used to describe the somewhat Asian features of kids with Down syndrome, or "Spick" for a person of Latino background. And I’m not arguing that language shouldn’t change along with attitudes towards inclusion and people with disabilities in general. What I am arguing is just this: If we’re looking to break down barriers, let’s not raise new ones by fiddling with the language so much that people are afraid to open their mouths.

When I talked about the new terminology with my Shutaf co-founder and colleague, Miriam, she commented that she preferred special needs to disability. Special needs, she argued, is what it’s about, that is, “the unique issues faced by each person,” as opposed to the perhaps harsher term, disability. She added that special needs also refers to the family as well, dealing as they do with the member of the family who has a specific issue. Or, in the words of my husband, “families of children with special needs, have special needs.” They’re not disabled by disability, but they are rendered special by the experience. It’s got a nice ring, I think. 

With that in mind, I hereby suggest that we react more sensitively when we hear a term that we consider questionable when it comes to disability. Consider that the person who used the term may actually feel a connection to that word. Or they may not realize that the language has shifted. Or they might not know that the word is no longer in style, or that using it suggests they are insensitive or ill-informed.

Education and engagement will go a long way towards bringing us all together, while challenging all of us as a community of caring individuals to step up and use our words wisely, just like we encourage a toddler to ask and not point. Language is the point of contact. But tone and the desire to learn is more important than what’s the newest flavor in the disability lexicon. That’s how we’ll create a more inclusive and welcoming society in which well-intentioned people feel at home no matter what language they use.

Beth Steinberg, is the co-founder and Executive director of Shutaf Inclusion Programs in Jerusalem. Shutaf is a place of complete acceptance for all kids; abilities and disabilities; religious and secular, rich and poor, from all cultural backgrounds. Follow Beth on Twitter, and read the Shutaf blog.

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I completely agree with this article.

I also prefer the term "special needs" because I think it more accurately describes a wider range of conditions that may indicate the need for special accommodations for children (and adults) for whom the label "disabled" does not seem appropriate. One such example is my son who recently qualified for an IEP ("Individualized Education Program" in the US). When we attended the first meeting to determine his eligibility at his high school, we were worried precisely because it would be a bit of a stretch to call him "disabled". If you looked only at some aspects of his academic record, you might see only a mentally "gifted" student (often scoring in the 99th percentile on standardized tests) and assume that he would not need any special considerations.

So why does he need an IEP? Well, we hope that the accommodations it allows will enable him to avoid a repeat of this year's downward psychological and academic spiral that led to a serious major depression during which for several weeks he spent up to 20 hours a day in bed with the covers over his head (not eating most meals) and was out of school for two full months. At the low point, both a psychiatrist and a therapist told us that our son required a special "therapeutic school" because he couldn't handle a regular school. After being assessed by several psychiatrists and clinical psychologists, and having lots of testing by a neuropsychological testing specialist and then by various professionals at his school, several reasons that he had difficulties were officially identified: ADHD, Asperger's Syndrome, and assorted specific mental processing deficits such as a poor ability to recognize faces, difficulties in integrating both auditory and visual information at the same time, and slower processing speed for some kinds of tasks.

We hope that his unusual school plan for next year will allow our son to graduate from his regular public high school (possibly a year later than his class year) and maybe eventually attend college. With no accommodations, he seemed headed to flunking out, or at best simply taking the GED which we know he can pass, but not to learn what he is capable of.

However, it seems incorrect to call my son "disabled" even if he has a few impairments and difficulties that "neurotypical" people do not. Nevertheless, he certainly does have "special needs". Labels can be good and bad. We did not have our son tested when he was younger even though he showed signs of dyslexia and ADHD and we delayed testing that might certify a diagnosis of "Asperger's Syndrome" because we were worried that labeling him would have negative consequences. But a clinical psychologist who worked with my son and my family when he was in a partial hospitalization program helped me to see that accepting a label did not mean also accepting negative associations or inappropriate actions based on the label. Accepting labels was actually a positive step because it helped us to address difficulties in more effective ways. And recently I've seen that there can also be benefits in labels since it was the fact that my son tests positive on the Autism test that qualified him for an IEP. It would have been harder to have had to add up all the other more minor issues to say that he qualified.

I agree with the author that people's attitudes and associations are more important that the specific terminology. It is considerate for a speaker to try to use words that the listener prefers, but people may also have personal reasons for their own word preferences. We don't want people to feel silenced due to fear of using the "wrong" word any more than we wish to return to the "bad old days" when people who were different were hidden away and people pretended they didn't exist.