In 2017, I sat down with Dr. David Allen for a long interview about my life. We had barely begun when we started talking about my mother.

I used the word retarded.

Dr. Allen picked up on it. “We say today mentally challenged,” he said, adding, “to be politically correct.” Then he asked me what I meant.

I explained that my mother was slower than the people around her. I talked about how my family had struggled to acknowledge that she was different and about the psychological assessment I had taken her for years earlier.

And the interview continued. But the words remained.

I have thought about that exchange since.

I wasn’t trying to insult my mother. In everyday conversation, I often called her special. In fact, I used special later in that same interview. But when Dr. Allen first asked about my mother, I reached for the word I thought would make clear what I meant.

I had grown up hearing it. I had heard professionals use it. I had heard ordinary people use it. In that moment, I thought I was choosing clarity.

Dr. Allen offered language he understood to be more appropriate.

Today, I would use a term that’s different from what either of us used back then: intellectual disability. In fact, what I have learned since that exchange is that the professional language had already begun changing. In the United States, intellectual disability replaced mental retardation in parts of federal law in 2010. By 2013, intellectual disability was the terminology used in the DSM-5, one of the major diagnostic manuals used by mental health professionals.

My interview with Dr. Allen happened in 2017.

I think about that too. There is no single moment when everybody gets the memo that a word has changed. Language moves through professions, communities, families and generations at different speeds. Sometimes we are still using the words we were taught long after another part of the world has moved on.

That does not mean the words do not matter. They do. But intent matters too.

I did not use the word ‘retarded’ because I thought less of my mother. I used it because, at that time, I believed it communicated what I was trying to say. Dr. Allen offered another word because he believed it was more respectful. Neither of our intentions made our language current. And our language, by itself, could not tell you everything about our intentions.

I think both things matter.

If someone tells me that a word I use hurts them, my good intentions are not a reason to refuse to hear them. But if someone uses a word I would not use, that word alone may not tell me everything I need to know about them either.

There is a difference between not knowing and refusing to learn. I know that because I have been the person who did not know.

The words we inherit

We learn language long before we understand everything that may be carried inside it. We learn it from family, school, church, professionals, conversations we overhear and people we trust.

Sometimes the language changes and nobody tells us. Sometimes somebody does.

I once sat in a meeting listening to a government minister speak passionately about people with disabilities. The minister repeatedly used language that was different from the person-first language I had been taught to use.

I noticed it every time.

I also did not think that setting was the place for me to interrupt and correct the minister publicly. So I didn’t.

A few weeks later, I heard the minister speaking to the press.

The language had changed.

I don’t know what happened between those two occasions. Maybe somebody had a conversation with the minister. Maybe the minister learned it somewhere else.

I only know something had changed.

Amid learning what words are ‘correct’, I have also learned that there is not one permanent rule I can memorize and apply to everybody. Some people prefer person-first language. Others prefer identity-first language. What one person considers respectful may not be what another person chooses for themselves.

Maybe part of learning new language is accepting that we may have to keep learning.

Sometimes the word is not the problem

Across my different professions and in various settings, I have heard the word Haitian.

By itself, this word, just like Bahamian or American, is nothing more than nationality or heritage; identity. There is nothing wrong with being Haitian, and there is nothing wrong with the word.

But I have also heard Haitian said in ways that carried something more. Sometimes I can hear what has been put inside the word simply by the way it is said.

The word does not change. What we put inside it does. Finding another word would not fix that. Because the problem is not always the name we give someone. Sometimes it is what we have already decided that name means about them.

I can get your name right and still get you wrong.

I have heard something similar in Christian spaces. Some people have moved away from calling themselves Christian. The word, they say, carries too much baggage or has come to mean things they do not want to represent.

So I hear other names:

Kingdom citizen. Child of the King. Follower of Christ.

I understand the desire to make a distinction. But I sometimes wonder what happens after we change the name. If I stop calling myself a Christian and call myself a Kingdom citizen, but I still look at the person I have labelled a sinner with contempt, my language has changed. My relationship to that person has not.

Changing what I call myself may matter to me. It does not automatically change how I see you.

The words that became mine

In my memoir on lessons from a friend, I spoke about many of the things Mama, my grandmother, called me. One such thing was dumb.

She said it often enough that I began to wonder if she knew something about me that I didn’t. My mother had an intellectual disability. I knew I was not like my mother, but somewhere inside me was the fear that maybe there was something wrong with me too.

Dumb was not something Mama called me daily, or even after I became an adult, but I still heard it every day because even when she stopped, I kept carrying it.

That is another thing words can do.

We can hear something about ourselves often enough that eventually we stop hearing it as someone else’s opinion. It begins to sound like our own voice.

Some of the words we use to describe ourselves did not begin with us. In my early adult years, a friend suggested that I might be depressed and that it might be a good idea to see a psychiatrist. My response was “So you think I’m crazy?” She had not called me crazy. I had. And I wasn’t using crazy to mean depression. The word held something much bigger for me because of what I was carrying from society, my community and other places. It carried what I had been taught to believe about people with mental health challenges and what I feared it might mean if I was one of them.

I came to realize that going to a psychiatrist made sense, but later, when the psychiatrist recommended medication, another phrase came out of me.

“I’m not one of those people.”

I knew what I meant. Somehow, I had already created a group of people I believed were different from me. Then I needed help too.

That was harder for me to accept than I understood at the time. I was not only afraid of what other people might call me. I was afraid of what accepting help would mean I had to call myself.

I wonder how many of us are carrying words like that.

Maybe somebody said the word to us. Maybe we decided it for ourselves after something happened. Maybe nobody ever actually said it, but somehow it became the explanation we gave ourselves for who we are.

And once a word becomes part of the way we see ourselves, we can start living as though it is the whole truth though it may not be.

How we see people

Getting the word right matters, but it is not the end of it.

As a counsellor and a global citizen, it is important for me to learn language, to know when it changes and what people prefer to be called. I am open to being corrected when I get something wrong.

But there is another question I have to ask myself: What do I see when I look at you?

If I know you have an intellectual disability, I know something about you. I do not know you.

The same is true of culture, faith, sexuality, a diagnosis. A label may tell me something important about a person without telling me what that thing means in their life.

My work as a counsellor keeps reminding me of this: Two people can share a diagnosis and tell me very different stories. Two people can share a culture or a faith and experience it very differently. Sometimes a person sitting with me will even use a word for themselves that I might not have chosen. My first job is not always to replace their word with mine. Sometimes my first job is to understand what their word means to them.

That takes curiosity. It also requires me to notice what I have already assumed. Because I can listen to someone while quietly fitting everything they say into a story I have already written about them.

Sometimes I need to ask myself:

And sometimes I simply don’t know.

So I have to ask….Tell me.

What I know now

Years ago, I wanted to understand my mother.

I knew she was different, but I wanted an explanation for the difference. So I took her for a psychological assessment. The results gave me information I did not have before. They helped me understand things about my mother that had never made sense to me.

But understanding did not immediately change what I expected from her.

Mama never asked me what the assessment said, and I never told her. At the time, I thought some of her unwillingness to name what was different about my mother came from denial. I still think some of it did.

But I can see something else now.

Mama had lived with my mother for years without the explanation I had gone looking for. There were things about her daughter she could not, or would not, name, yet she cared for her and interacted with her as the daughter she had come to know.

In some ways, Mama had accepted what I was still struggling to accept.

I had wanted my mother to be different. There were things I wanted from her that she could not give me.

That is not easy for me to write, but it is true.

The assessment helped me understand my mother. But understanding the explanation and accepting the person were not the same thing.

Mama was the person who called me dumb.

She was also the person who had accepted much about my mother without having the words I later learned.

Both of those things can be true.

I don’t need to make Mama right to recognize that.

Today, if someone asks about my mother, I would say she had an intellectual disability. That is the language I would use now. It is more accurate and more respectful than the words I once used.

But it does not tell you who my mother was.

It does not tell you she loved drinking sodas. It does not tell you she loved meeting new people. It does not tell you she loved books and writing, even though her writing was illegible.

And even after I tell you those things, you still don’t know all of her.

The phrase intellectual disability tells you something true about my mother.

It just doesn’t tell you everything.

Maybe no word can.

What we carry

So perhaps the goal is not simply to carry the right words. We also have to pay attention to what we carry inside them.

And maybe that starts closer to home than we think.

And then I have to turn the questions outward.

I was going to say we should carry tolerance.

But even that word makes me stop.

When I say I tolerate you, haven’t I already made some judgment about you? Why would I need to tolerate you unless I had first decided there was something about you that required my tolerance?

And there I am again.

Examining another word.

Maybe there will always be another word.

That may not be a bad thing if examining our words also makes us examine ourselves.

Because after all the correcting, learning and relearning, there is still a person standing in front of us.

And there is still a person looking back at us from the mirror.

Neither one can be contained in a word.

I began this story with a word I once used for my mother. I could end it with the word I use today.

But I think I would rather end with her name.

Cassie.

Selected sources

1. Rosa’s Law, Pub. L. 111–256 (2010). Replaced “mental retardation” with “intellectual disability” in specified federal statutes.
2. American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders, 5th ed. Adopted “intellectual disability” as the diagnostic term.
3. Fielding, W. J., Ballance, V., Scriven, C., McDonald, T., & Johnson, P. (2008). The stigma of being ‘Haitian’ in The Bahamas. The College of The Bahamas Research Journal, 14, 38–50.
4. Perry, C. M. (2021). ‘Kouri, kouri! Bis la ap vini!’: Reflections on the stigma of being Haitian at primary and secondary school in the Bahamas. Ethnicities, 21(5), 893–911.