In the United States, about 1 in 4 adults live with a disability, which is defined as “a physical or mental impairment that substantially limits one or more major life activities” under the Americans with Disabilities Act (ADA).1 Out of the approximately 7.8 billion humans on earth, a significant number of people – an estimated 15-20 percent of the world's population – exhibit some form of neurodivergence.”2
Given those statistics, it is highly likely that we or someone we love are disabled and/or neurodivergent. To be respectful of each individual’s dignity, it is important that we use the correct terminology when we refer to them. But many of us – as well-meaning as we might be – tend to use obsolete or inappropriate words.
What’s in a name?
There are patently offensive terms like “retarded,” “insane,” “crippled,” and “psycho” that have been used over the years to describe disabled, neurodivergent, or mentally ill people. Thankfully most people realize nowadays that those terms are completely unacceptable, but parents should carefully monitor their children’s language and watch out for derogatory terms, as they still pop up in childhood insults.
But in addition to outright slurs, there are many other terms that are outdated and need revision. In an attempt to be inoffensive, some people employ euphemisms like “differently abled,” “handicapped,” “challenged,” “special-needs,” “on the spectrum,” “mildly autistic,” and “high/low functioning.” You may be wondering what is wrong with those terms. They are, after all, frequently used by organizations and individuals who intend to advocate for disabled and/or neurodivergent people. You may also wonder who gets to decide which words are acceptable and which ones are offensive. While there are many opinions on the topic of semantics, it is important to listen to neurodivergent and/or disabled individuals and use the terminology they prefer. Since they are the ones living with the conditions, they should be the ones choosing the words that describe them.
If it is necessary to refer to a person’s neurodivergence or disability, it is best to ask the individual what terminology he/she prefers. Times are changing, and human conditions are being understood more clearly, redefined, and renamed. There is a growing focus on respect and empowerment, which is certainly an improvement over the condescending and insensitive way disabled and/or neurodivergent people have been labeled and treated throughout history.
The United Nations Disability-Inclusive Language Guidelines explain further why euphemisms are so inappropriate: “Some expressions have gained popularity over time as alternatives to inappropriate terms. However, many of them reflect the misguided idea that disability needs to be softened. We should therefore not use terms such as ‘differently abled,’ ‘people of all abilities,’ ‘disAbility’ or ‘people of determination,’ as they are all euphemistic and can be considered patronizing or offensive. For example, ‘differently abled’ is problematic because, as some advocates note, we are all differently abled. Euphemisms are, in fact, a denial of reality and a way to avoid talking about disabilities.”3
Why does language even matter?
We need to choose our language responsibly because words have power and affect how we think about people. Consider the difference in these sentences:
“Kamal is low-functioning.”
“Kamal is autistic and communicates using an AAC (Augmentative and Alternative Communication) device.”
What will you think of Kamal if you hear only that he is “low-functioning?” Will you have any insight into his individual support needs or capabilities? Are you likely to consider him equally as important as any other human? Will you be aware that he can communicate, given the proper tools?
Language that is imprecise and ableist is unjust and harmful. What is ableism? According to the United Nations Guidelines, “Ableism is a misguided and biased understanding of disability that leads to the assumption that the lives of persons with disabilities are not worth living. Ableism can take many forms, including harmful language.” The Guidelines point out that “. . . inclusive language is a key tool in combating ableism and its entrenched manifestations.”4
Is it ok to discuss disabilities?
First of all, it is important to note that “disabled” is not a dirty word, and there is more than one way of seeing disability.
The medical model of disability is about what a person cannot do and cannot be. According to Sarah Buder and Rose Perry, Ph.D., “The ‘medical model of disability’ has long informed mainstream public and professional perceptions of disability, and views disability as a problem that exists within a person’s body, only to be solved by medical doctors. This model frames the body of a person with a disability as something that needs to be ‘fixed,’ suggesting that ‘typical abilities’ are superior and that physical or mental impairments should be ‘cured’ with the help of an outside force.”5
“The social model of disability—developed by disability rights activists in the 1970s and 80s—suggests that if societies were set up and constructed in a way that was accessible for people with disabilities, those individuals would not be restricted from full participation in the world around them. In other words, the social model of disability views the origins of disability as the mental attitudes and physical structures of society, rather than a medical condition faced by an individual.”6
What about neurodivergence?
What are “neurodivergence” and “neurodiversity?” There are many terms of import that relate.
Neurodiversity is “the range of differences in individual brain function and behavioral traits, regarded as part of normal variation in the human population. Neurodiversity embraces the idea that every human is unique with a unique combination of abilities and needs.”7 The term “neurodiversity” refers to a larger category of people with varying neurological differences, as well as neurotypical people.8 Under the umbrella of neurodiversity are autism, ADHD, dyspraxia, dyscalculia, dyslexia, dysgraphia, and Tourette’s Syndrome.
Neurodiverse means “displaying or characterized by neurologically atypical patterns of thought or behavior; not neurotypical.”9 A group of people are neurodiverse; an individual is not.
Neurodivergent: According to the Cleveland Clinic, “Neurodivergent is a nonmedical term that describes people whose brains develop or work differently for some reason. This means the person has different strengths and struggles from people whose brains develop or work more typically. ‘Neurodivergent’ is a way to describe people using words other than ‘normal’ and ‘abnormal.’ That’s important because there’s no single definition of ‘normal’ for how the human brain works.”10
Neurotypical is the word for people who aren’t neurodivergent. That means their strengths and challenges aren't affected by any kind of difference that changes how their brains work.”11
It is important to note that neurodiversity can be associated with disability, but not in all cases. Some neurodivergent people may also have a disability, or their neurodivergence may be disabling in some circumstances.
Activists Speaking Up
Many autistic people – some of whom are activists and educators – are trying to change the way autism is labeled and perceived by the general public. It is very common for people to describe an individual as being “on the spectrum,” for instance. Sometimes they use this phrase facetiously to describe someone they think is quirky or socially awkward. Other times they know a person is autistic but think it’s insulting to use the actual word “autistic,” so they try to soften it by saying “on the spectrum.” Using this phrase to tease or criticize someone is insulting to that person and to the autistic community. Furthermore, many autistic people believe that calling a confirmed autistic person “on the spectrum” implies that the word “autistic” is negative, frightening, and to be avoided at all costs, when in reality being autistic is not inherently better or worse than being neurotypical.
Additionally, the phrase “on the spectrum” implies that people might be a little bit autistic or a lot autistic, when in fact, a person is either autistic or not; there is no spectrum of “autisticness.” In reality, autistic people’s support needs and traits vary. Some autistic people have many support needs, while others have few, but their specific needs don’t make them more or less autistic. Further reading on this topic can be found in this article.
Another common tendency is to label autistic people “high functioning” or “low functioning.” In certain circumstances, when they are comfortable and supported, some autistic people might appear to be “high functioning” according to neurotypical standards. They are able to manage their day-to-day tasks and/or mask their autistic tendencies to fit in with neurotypical standards. But the very same autistic person might appear “low functioning” if he is burned out, uncomfortable, or unsupported.
Just like neurotypical people, autistic people will be affected by their environment, current mental state, overall health, and amount of support. Therefore functioning labels like “high functioning” and “low functioning” are misleading because they are so arbitrary. Furthermore, the term “low functioning” can be very demeaning, as discussed in the previous example of Kamal. People will not expect positive contributions from a “low functioning” person and might even subconsciously see that person as unworthy and less than human. On the other hand, a person labeled “high functioning” might be assumed to be just fine without any accommodations. When he or she does need extra help or tailored services, they might be denied them because they’re so “high functioning.”
For many of us, this information might feel like a lot to take in, like learning a whole new language. If we find ourselves confused, resistant, or uncomfortable discussing disability or neurodivergence, it is a clear opportunity for learning and growth. Many of us – myself included – have an ableist mindset that we are not even aware of because we have never lived with a disability, and we take accessibility for granted. If we are able to walk out the door and complete everyday tasks with ease, no matter where we go, then we are extremely blessed and privileged, Alhamduillah, all praise and thanks are due to Allah. Our ability and neurotypicality are not things we should take for granted, and the least we can do is learn about disability, neurodiversity, and the obstacles faced by people who live in a society that is not structured to support them. We can start by using respectful language and might even be inspired to make a tangible difference in the world, inshaAllah, God willing.
End Notes
1 The Social Model of Disability Explained
3 Disability-inclusive Language Guidelines | UN Geneva
4 Disability-inclusive Language Guidelines | UN Geneva
5 The Social Model of Disability Explained
6 The Social Model of Disability Explained
7 Understanding Neurodiversity - Therapy Focus
8 Neurotypical: All You Need to Know and More
9 The Rise of Neurodiverse Mindset - The Autism Helper
10 Neurodivergent: What It Is, Symptoms & Types
11 Neurodivergent: What It Is, Symptoms & Types
Laura El Alam is a first-generation American Muslim and the author of over 100 published articles. She has written a children’s book, Made From the Same Dough, due to be released in July, 2023. You can visit her online at www.seaglasswritingandediting.com.
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