Wednesday, March 3, 2010

The tyranny of two words

Mental retardation was coined as a medical term over 50 years ago—a then neutral term to replace idiot, imbecile and moron. But a quick trip to the thesaurus reveals that the words today mark a person as “abnormal, subnormal and deficient.” And any kid can tell you that the shortform “retard” connotes someone who’s useless.

Special Olympics is holding an awareness day today to encourage people to give up use of the R-word in casual, everyday language. I wrote about my support last Friday. But ever since then I’ve found myself fretting about the two words the R-word originates from: mental retardation.

Divorced from our culture, the words are relatively benign, indicating mental slowness. My angst stems from the realization that there is no way of separating out the stigma our culture attaches to these words.

My post may have implied that I’m totally cool with the clinical use of the words, when really, I’m not. They felt like an assault the day I first saw them attributed to my son, and they still do.

More importantly, I never, ever think of him in that context. What I mean by this is that I do not see my son—in any way—as “abnormal, subnormal and deficient” or as somehow of less value than someone with average or Einstein-like intelligence. He is a child who struggles to learn, but I do not see him as “slow.”

Mental retardation is not a topic of discussion in our house and we never told Ben about the diagnosis. We may talk about why things are harder for Ben to do, but we don’t label that under the catch-all of mental retardation. This is similar to our approach to our adopted daughter who has issues related to trauma and attachment. We might talk about why kids whose biological families are disrupted early have problems trusting others, but we would never tell our daughter: “You have attachment-disorder. You are attachment-disordered.”

On an everyday basis, these clinical terms that seek to categorize and delimit have no relevance to our life.

I remember a family whose healthy son had a massive, unexpected bleed in his brain. After months of gruelling rehab he regained his speech and some mobility. When his mom spoke to him about the fact that he’d lost his vision, his response was: “Mom! I may not be able to see. But I'm not BLIND!”

No one wants to be defined by a label that puts them in a box!

Perhaps some of you have the same feeling about the word disability. Because I've worked in a pediatric rehab hospital for so long, I've become desensitized to the word. But I remember when Ben was young I didn’t in any way identify him with having a disability, or being the opposite of “able.” I still don't think of him as “disabled” even though he has multiple disabilities.

People with disabilities have taken ownership of a word that was once used to stigmatize them, but the word itself—taken at face value as a negation of ability—hardly seems a starting point for describing the complexity of a human being. It doesn't in any way describe the flesh-and-blood people who adapt to all kinds of differences.

When I look at my son, the defining characteristic that rises to the surface is not disability. It's a mix of honesty, capacity for great joy and connection, and enthusiasm for life.

I see a kid who loves scrolling through photos of his classmates and family on his iPod. A kid who loves to dance to Pixar theme songs like “You've got a friend in me.”

I see a young man who stops on a busy sidewalk to wave his hello to the homeless man sitting on the concrete. One time he approached a man using a walker in a park and spontaneously gave him a hug. Another time he saw a man with dwarfism in a store and gave him an enthusiastic pat on the back (Ben too has a form of dwarfism).

I see a kid who humors his mother by calling her “cool.” And a kid who knowingly signs “sad” when his mom talks about missing Grandpa.

I see a teen who’s never been able to speak and struggles to hear, but surprises his parents and researchers by scrolling through an iPod he’s been given to communicate and finding folders we didn't think he could read: one for “manners,” one called “categories.”

My son experiences life fully. He’s already looking forward to his birthday at the end of the month. So last night when a package arrived that he figured held Star Wars characters he’s been asking for, he couldn’t contain his excitement. “When are you wrapping them?” he signed repeatedly. “When will I open them?” Then he went downstairs to look for the big container we keep the wrapping paper in. “Can I help?” he asked.

He’s a boy who adores tradition – he still likes pin the tail on the donkey and piñatas.

He’s someone who can lose himself in the silliness of a funny book or movie—giggling with abandon—even though he’s experienced more physical pain than I can imagine.

A couple of weeks ago I rubbed his back when a doctor held a mask to his face and he breathed in the stinky propofol that would knock him out for a cat scan. He's got more guts than I'll ever have.

My son is my hero. He's taught me more about life, about love, about courage and about what matters, than anyone.

Is it any wonder that parents like me want to throw off words that don’t in any way do justice to the essence of our children, and which have been twisted into epithets of cruel abuse?


This is stunning -- you took the words right out of my mouth, although I'm not sure I could EVER have said them as eloquently as you have. I am going to link this to my post today!

Came here via Elizabeth's post. Beautiful. And thank you.

Louise, thanks again, and I too will link to this. I gave a bioethics lecture last week about the problem of medical diagnoses--that although they provide some generalized information, they never actually demonstrate the full reality of a living person. Words like "mental retardation" or "heart defect" can never convey the gift given in each human life.

Do you see any use for the words mental retardation anymore? And if not, what do you think the medical community should use? As you know, I'm working to figure these things out myself...


Amy Julia

Wonderful post, I feel the same way but would have had a hard time putting it into words.

Beautiful, eloquent, and oh so true. Bravo!!

I do believe that the term MR is negative and outdated. I am very glad that there is a campaign to end the R word which unfortunately is tossed around nonchalantly. I too used the word without thinking twice. But that was before my son was born. He does have a disability, that's not all he has. He also has a great smile, but that doesn't make the disability go away. In the world we live in, it is very obvious he has a disability. I would be lying if I said I didn't see it.
The term that was used when we first got a diagnosis was that he had a developmental disability. For me that's a mouthful to say. Especially at the playground when another mom asks. No one knew what I was talking about until I said, "well, that's the politically correct term for MR".
Am I the only one that feels this way?

Hi everyone -- thank you for your comments!

Amy Julia, I do not have a ready answer for a term that could be used instead of MR.

I get what Nini is saying that no one understands what developmental disability is(and some children who can be described as having a developmental disability don't necessarily have an intellectual disability).

My fear is that the term intellectual disability, which I understand is what the psychologists have formally renamed it, will over time become used to stigmatize, in the same way MR did. Also, when you look at the words themselves, do our kids really have a "lack of intellect" or the opposite/negation of intellect?

One psychologist explained MR to me as a child who struggles with academic learning.

I noticed that Mencap in Britain uses the term learning disability to cover what we would think of as intellectual disability (I was surprised because those two are usually clearly demarcated in North America).

I wonder Nini -- do you need to give a clinical diagnosis when someone asks you in the park about your son? What about something more generic, like "He has a disability that makes it harder for him to learn" -- or whatever the case may be for your son. Sometimes with my son I will say he has a rare genetic condition and then describe in lay terms how it affects him.

Something inherently bothers me about a term that singles one out as having low intelligence -- and isn't intelligence more complex than that (more fluid and grey vs. black and white)?

Perhaps what's bothering me is the predominance that this label is given in a child's life -- the weight it carries vs. other attributes of the child.

Obviously this is a topic that requires a lot more thought.

What alternate terms do others like?

Here from Elizabeth's blog.
Loved reading this.

In the UK, as far as I understand it (not lived there for a while) in education "learning disability" covers intellectual disability as well as other learning disabilities not related to intellectual disability. Within the system of health care intellectual or developmental disability is used. It always strikes me as odd that Mencap is still Mencap (mental handicap) - I don't think anyone gives it a second thought as the organisation has a positive image.

I don't know if this is helpful at all, it just seems in the UK education department sticks to the learning aspect, regardless of diagnosis, so a school will be described "for severe and complex learning disabilities".

Thanks for stopping by Bethany!

Emma -- I like the UK education's system of using the broad umbrella of learning disability.

I never thought about the meaning of Mencap. have a great weekend! Louise

"My fear is that the term intellectual disability, which I understand is what the psychologists have formally renamed it, will over time become used to stigmatize, in the same way MR did." Exactly, BLOOM. I think the change in words over time as been towards better words, but what next? Society needs some words to describe what they see - behavior or ability. The words have trended towards differences over disability - better words I think. I'm now reluctant to use the term 'disability' since viewing Aimee Mullins TED talk (which is now linked in my middle column under Brain Food).

How can we not acknowledge the differences if we are to help the person with them?

I also have a page/essay "On Intelligence" linked in my middle column under For All Parents.


This is an absolutely beautiful and truthful essay. I feel those same things as you do when I think of Gabriel. When I hear "mental retardation" and "disability" in the context of Gabriel's life, it almost doesn't make sense to me. "Who are they talking about?!"

I know that the argument is that the word "retard" is only a word and it will be replaced with something just as stigmatizing, but I believe that the movement that is happening is the learning experience in and of itself.

Truly, we need to acknowledge that at this time in our lives, the ability to raise awareness about using language to dehumanize a segment of our community is great.

It would be wonderful to live in a "people first" world, and if this language movement begins the process, I'm all for it. :)

thank you for this post. i am so relieved to read your opinion on the word "disability". i have never been able to swallow the DIS aspect of ability, and still don't understand why it's such an accepted term.
i live in switzerland and the german term holds a similar connotation towards what CAN'T be done, which makes me sad- especially because it's so ingrained that most people don't even think about it.
we're all differently-able... able in different ways to live our lives.... i wish there was an easy way to say this.

Your words about your son are so beautiful, truthful and moving. Thank you for writing this. I hope Ben is doing well.