Intellectual Disability/Intellectual Developmental Disorder (ID/IDD), formerly known as “Mental Retardation” is a neurodevelopmental disorder (onset in childhood/adolescence). It includes both intellectual and adaptive functioning deficits in conceptual, social and practical domains. Thus problem solving, planning, abstract thinking, judgment, academic learning, and learning from experience become slow and difficult along with limited functioning in communication, social participation, and independent living. The latest diagnostic manuals: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V) and International Classification of Disorders (ICD-10) have changed the nomenclature over the years keeping sensitivity concerns in mind. It’s a long way from idiocy/feeblemindedness which were some of the earlier terms used with respect to the condition. “What’s in a name?” While it was introduced into official language to replace terms like “moron”, with time the word took on the same connotation and began to be used as a slur. And if you were to still believe that people with intellectual disabilities are really to be ridiculed because of their relative inability to adapt like “others”, then it might be intriguing to know that the abolishment of the term “retard” from official language is credited to a little girl (now a teenager) called Rosa Marcellino. And guess what? Rosa had Down syndrome: a genetic syndrome associated with intellectual disability. Rosa’s 13-year old brother, Nick, while making his plea to the Assembly beautifully put across, “My sister might be one of the smartest kids I’ve ever met, and that’s the truth! It might take her longer to learn some things, and you can’t always understand everything she says. She’ll never be ‘just like’ most people, but hopefully neither will I.”
As a parent to a child with intellectual disabilities, it becomes difficult to come to a point of acceptance as I have witnessed several times because of the stigma attached and the difficulty of the process involved. Especially since with several cases of mild to moderate ID, the markers present much later when the academic/adaptive skills become more challenging. There are, however, signs that parents can be more sensitive to in the early years of development such as delays in initial developmental stages of rolling over, sitting up, crawling, walking or difficulty/delay in talking. Early intervention and consistent attention can help the child overcome the setbacks experienced in mild ID and significantly increase adaptive skills in children with moderate, severe or profound ID. And what definitely helps bring about acceptance, apart from time, is a shift in perspective. Instead of being let down by the inability of the child to function as “well” as other children do, we might want to consider that every child comes with their own share of difficulties, areas of attention, and definitely their own strengths. Raising any child is an exhilarating experience and no one has the exact prototype of what is to be done. So a child with ID is as unique as every other child and it is up to us as caretakers, teachers, guardians to “tune into” their specific pulse.
Parenting a child with ID can be a very enriching experience in itself which opens us up to the things we take for granted in our privileged lives. Now this might sound like a socially desirable answer expected out of parents but there is more to it. For example, the “normal” (not really a fan of the term) patterns of development and learning in a child are often taken for granted by parents because that is the expected outcome. The same milestones are occasions for celebration for parents whose children do not show these signs as easily. Further, a senior colleague of mine shared a very beautiful instance wherein she had had a conversation with the mother of a child with Down syndrome who spoke about how much better their life became because of the child. At first my colleague, though curious, chose to remain silent about the statement. Years later she asked the mother why she said what she said and the mother responded saying that she and her husband were extremely preoccupied in their fast-paced lives. However, when the child came along, things had to move at his pace and it allowed for them to open up that much time and space in their lives and they became a lot more easygoing and relaxed. Gives us a chance to think, right? That it might be of value to “retard” the pace of our constantly accelerated lives. That just because something takes longer to happen, doesn’t mean it won’t happen or it can’t be appreciated for what it is.
What can you do?
- So the next time “retard’ is flung into conversation as an attack or a means to ridicule someone, maybe try to enlighten them and even elaborate the value in slowing down.
- Many people with ID are prone to depression because of constant attacks and pressure to display age-appropriate behaviors which can lead to feeling unwanted, unimportant or deficient. Try not to become an added source for a mental health professional’s income
- Educate yourself. Ignorance might be bliss but is also a form of darkness. Enlighten yourself so you can light up another. Even if you are not directly dealing with a person with ID, it always helps to be a knowledgeable person. If all of us became aware and sensitive enough, there won’t be a need to change (objectionable) terms every few decades
- As a parent of a high functioning child, educate your children about mental health and related concerns and allow them to engage with children at all functional levels. They will grow up to be beautiful, sensitive people.
- Humanize them (more importantly, yourself). If as a culture we become more inclusive just because we still value a human life, we’ll be on a much better path. The storing away into “other” category is probably required for assessment or evaluation but need not be a way of life
- Support. Support. Support.