To the Doctor Who Doesn’t Call My Son With Down Syndrome by His Name

You there, in the lab coat. Yes, you. Put down the pen.

We need to talk.

You haven’t really looked up since we walked in. Last I checked, we were here for you to examine my son, Rukai, and you’ve only been asking leading questions and making notes, rating him against some invisible scale and ticking boxes. It’s incredible! That pen hasn’t stopped. Your questions haven’t stopped. And your paper has received far more attention than my son has, which tells me that frankly, you are wasting our time.

I have to tell you that it’s beyond difficult for me to extend the courtesy of calling you “Doctor.” It’s difficult because my son’s name is Rukai, and in the five minutes since we sat down, you have yet to say it. It’s difficult because my name is Maxine, and you keep calling me “Mom.” And there’s that pen, scribbling. Scribbling. Ticking boxes. Ticking me off.

You have called Rukai “they.” You have compared him to thousands of other people with a similar condition, but at last check, good sir, these other people are not Rukai and Rukai is not them. And I am not your mom.

You expect we will hang on every word and follow your directions to the letter. That we will gladly come back for you to monitor something that’s not presenting itself as a problem in reality. But on paper, it may. And therefore you have clear guidelines as to what you should statistically be monitoring.

But the scale tips to me when it comes to identifying what we should be monitoring. Just because Rukai has a disability does not mean we’re unable to look after him. If there were no third copy of the 21st chromosome floating around in his blood, you wouldn’t even consider his current condition worth monitoring. He is developmentally delayed and that is all. Other than that, we just don’t see any issues. But you just keep looking for them.

Rukai is a unique individual, just like you, and as his mom, I know him best. If you had spent these first five minutes looking at us and asking me whether I’d noticed any changes, or how his behavior had been recently — rather than immediately begin comparing him to thousands of other people — you would have his truth before you. I don’t care how many patients you have seen over the years. You have not met Rukai until today, and today is when you first learn about Rukai.

Statistics are guesswork. Life is too short to live tunnel-visioned in the grey.

I find it both comedy and tragedy that society is perennially patting itself on the back for celebrating difference: in religious belief, gender identity, political persuasion, hair color, body shape, and so forth. Yet here, when you’re talking about the very thing that makes us unique — genetic material, human DNA — you group, box up and throw away. You say “they” and tick those boxes.

And now that you’ve not paid him any attention, you go and run some play-based testing. And guess what? Just like any other kid on earth, if you aren’t engaged with him, he won’t be interested in you. And he won’t play. Do not dare assume this means he cannot.

And you write in terms of how he “is.” Based upon 60 minutes of a life that has already gone on days, weeks, years. Sixty minutes with your pen inking commentary which would fade and wash away if you left it out in the rain.

Place Rukai out in the rain and he will tilt his head back and laugh and flinch and maybe go and stomp a puddle. He will not fade. He will not wash away.

I’d ask you to remember what brought you to medicine in the first place. You wanted to care for people. To serve. To listen and to respect. To advise and to heal. But with years of practice, I’m sure there’s monotony, repetition, boredom. Paperwork. I suspect it’s become far too easy to categorize people just to get that revolving door of endless patients to cease spinning. It might seem so much easier to find a common thread and close the chapter than to uncover a new story.

But I challenge you to remember why it matters to society that we celebrate difference. Remember why Rukai matters. Because we all have a unique contribution to this life — 46 chromosomes, 47, whatever count, he counts. He has a name and a story, and he has unique potential. He has likes and dislikes. He is not “they.”

Follow this journey on Down In Front, Please.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Down Syndrome

When I Saw My Son With Down Syndrome on Times Square’s Big Screen

As the mother of a child with Down syndrome, I sometimes feel like advocacy/raising awareness is just as much a full-time job as motherhood and my full-time job. But sometimes you have those really great snapshots in time when you feel you’ve made strides in advocacy and awareness, and those moments provide the fuel you [...]

To the People Who Think My Daughter With Down Syndrome Is ‘Always Happy’

One assumption made about people with Down syndrome is that they’re always happy. I’ve observed my daughter, Lydia, to see how accurate that statement is. Honestly, I don’t like hearing this assumption because I remember all the times she disobeys, yells and screams, and throws a tantrum. To me, she has every emotion, and there’s really no difference with [...]

16 Ways to Make the Most of Counseling — From Counselors Themselves

If going to counseling is something you’re thinking about or a pursuit you’ve just begun, it can be a daunting process if you don’t know what to expect. So we teamed up with the experts — members of the American Counseling Association — to get you the inside scoop on what to expect from counseling, [...]

To the Person Who Reminded Me Others Have It Worse After My Hospital Stay

The conversation with you happened over two years ago, and yet I still remember it vividly. I was only a month out of the hospital when you cornered me in the hallway at work. You knew my mom had moved to live with me because I was extremely sick, but I don’t think you fully [...]