Dear future mom expecting a child with Down syndrome

I hope you’ll join the million of others who have watched the above video, produced through a collaboration of organizations including the Jerome Lejeune Foundation and Saving Downs. I already expect what some will think of it. Here’s what I have to say about that.

I expect that most watching the video will love it. It’s well produced, beautifully shot, well-written, with some wonderful images. I expect many will be surprised to see these individuals with Down syndrome speaking in their native languages from around the world. But, I also know what some will say:

Oh, that’s not realistic. It’s too positive. Where are all the ones with higher needs and are “low functioning.”

I know that some will say this, because they have said it to me. Prenatal testing laboratory representatives at conferences; physicians and professors at meetings; and even fellow parents of children with Down syndrome. This is the “sunshine and light” portrayal of Down syndrome, not the accurate depiction of what a life with Down syndrome is.

To that criticism, allow me to respond with all of my legal and bioethical training in rhetoric and argument:

That’s bullshit.

Do these same people criticize the United Negro College Fund for not featuring a young black man who instead of going to college, drops out, becomes addicted to drugs and winds up incarcerated? (regrettably, a much higher percentage of the African-American male population than the corresponding percentage of individuals with Down syndrome who have higher needs).

Do they see it as a valid criticism of the proponents for gay marriage that they don’t feature some of the more debauched parties and festivals when they are making their case for committed monogamous homosexual relationships?

When the suffragette movement was underway, was it a valid critique to say women shouldn’t have the right to vote because they weren’t educated enough by portraying the women who were denied going to school, working, and being independent?

Of course not.

And, yet, this same sort of criticism is leveled at every portrayal of life with Down syndrome that doesn’t also include a portrayal that used to be the only one shared with parents: grainy, black-and-white photos of an individual with Down syndrome, tongue portruding, dulled-eyes, who had been institutionalized since birth.

That is not an accurate picture of Down syndrome. It wasn’t even accurate when it was the way that many individuals with Down syndrome did live.

Because, as the recent generations of individuals with Down syndrome have shown, individuals with Down syndrome, if loved, supported, educated, can do all the things mentioned in the film:

They will hug you.

They will run to you.

They will go to school.

They can hold a job.

They can take their parents out to dinner.

So, just shut up about how every portrayal of Down syndrome must also include the absolute worse situation in order for it to be a valid portrayal. We don’t expect that of any other minority group and it’s only expected of Down syndrome because of the persistent negative, prejudiced, bigoted view of a life with Down syndrome.

And, here’s why I can say that so emphatically.

Because the most important part of the video–the part that had one writer crying “ugly tears” because it made her so emotional–is at the very end when the individuals with Down syndrome each hug their moms. Both mother and child are smiling ear-to-ear, embracing each other, and loving each other.

That is the accurate portrayal of what a mother can expect from having a child with Down syndrome if she so chooses.

And that’s, again, not being all “rainbows and ponies.”

It’s been proven.

The research by Dr. Brian Skotko and his team found that 99% of over 2,000 parents surveyed across the United States said that they loved their child with Down syndrome. (I doubt you would get that high of a percentage if you asked the general population about their children who don’t have Down syndrome). But, what Dr. Skotko is key to note is that that response remained the same regardless of how the parents assessed their child’s needs and functionality. High needs and low functionality, low needs and high functionality–it didn’t matter. Parents of every child said they loved them.

And that is what this video shows. That mothers will love their children with Down syndrome. If they choose to.

The video is accurate. It’s beautiful. And, I hope you will share it with those you know.

Comments

  1. Michelle Gilliam says:

    Thanks, Mark. Great response.

  2. Well said Mark. My 2 yr old son ith DS rocks his extra chromosome. Tomorrow we are off to have his first visit at Kindygym with his lovely Physio of 18 months offering to come with us for our first visit. It is an inclusive kindergym. Everyone and anyone can go there and thats exactly how our kids with that little extra should be treated. Like everyone else because they are. My son loves those kids indoor play cafes and shoots off at great spped thru the tunnels and down the slides laughing as I chase him. No doubt Im going to be worn out by the end of tomorrows sessn. 🙂

    • Glad to hear your son’s doing so well. Reminds me of a friend of ours. We shared the same physical therapist. She laughed as she told of how she decided he didn’t need her services any longer after he ran past her when she opened the front door and she had to chase him down the sidewalk.

      • Haha that is a classic.. We have a huge DS community here in Australia and we deffinately have some runners in there. I have a feeling i am going to need eyes in the back of my head with my cheeky little rascal. You’ll have to excuse any typo’s as it just after 1am thursday the 20th now. Have a great day. Im off to sleep.. 🙂

  3. It is a beautiful video and my one year old does very well and brings a smile every day. Her sisters adore her.

  4. This is a fantastic blog, and the best one-liner response ever!

    I think that the overwhelming supportive response also speaks another message – that we are moving forward with building true inclusion for those with Down syndrome. This is a tremendous shift from only five years ago. I believe we can attribute that to literally thousands upon thousands of advocates all playing essential roles in building a culture of inclusion and the individuals themselves out there living their joyful lives.

    I think this is a point in history where we can stop and thank our collective selves for a job well done. Then take it forward with renewed passion, knowing that we are the change that we want to see in the world, acknowledging that there is still much to do, and recognising that we can do this.

  5. Yeah! This is a great post and I’m glad you said it. Thank you. That is all.

  6. Wonderful video!
    Points well made!
    A former boss had an adoptive brother with DS. He saw my son (also with DS) and said the most profound thing I’ve heard:
    “Ya know, if every household had someone like him in the family, the world would be a better place.”
    Can you imagine?

  7. kathy ratkiewicz says:

    I, too, love that video. But I don’t know that all people who say that individuals with higher needs should also be included are being negative. I know that is not my intention when I say it. I believe that we should include them to show that they,too, are valued members of the community. This person said it much better than I can:
    Down Syndrome Articles
    Editorial Thoughts… On Being Tender by Margaret W. Lewis, Webster Groves, MO. DSN, Vol. 24, No. 2, p. 15-6.
    EDITOR’S NOTE: At the prompting of a longtime NDSC member, we have chosen to reprint this treasure of an editorial written by our esteemed former editor. (From Down Syndrome News, newsletter of the National Down Syndrome Congress, 1370 Center Drive, Suite 102; Atlanta, GA 30338. October, 1983, pg. 109.)

    There is a dilemma, as an editor, in meeting the needs of the public relations impact, of proving beyond the measure of a doubt that children and adults with Down syndrome have potential-that formerly inconceivable capacities are possible for people with Down syndrome.
    The dilemma is that, in striking out with our best foot forward, we sometimes run the risk of kicking, quite cruelly, some parent whose cherished child will never go to high school, never give a public talk, perhaps never even speak at all.
    Continually the input to Down Syndrome News is stories of success, tip-top achievements. Often there is humor and gentle acceptance of imperfections, but in each of us as parents there seems to emerge that insidious seed of wanting to have, as someone put it, the best child with Down syndrome. Having conquered (we like to believe) the grief of not having the normal child we expected, we still play for the winner’s circle.
    And it is good to have high expectations. Good to take joy in the little triumphs, good to show a doubting public that our kids too are wunderkinds. But where is the line, where is the edge of tenderness that keeps us aware of the hurt of others? The great thing we, as parents of children with Down syndrome, share with one another is the vulnerability we each inherited when our particular child was born to us. The automatic humbling came to us every one, and out of it was created a kinship unlike any other but that pain can bring.
    In the end, of course, it’s a matter of individuality. The final joy is in the achievement, the communication-whatever level-of each child as himself or herself. The final proof of our humanity is in the non-comparing love we can show for our children and for each other.
    But, if chance has dealt you a “high functioning” kid, take a few minutes and role-play the part of the parent of a child who doesn’t read, or count, or jabber hundreds of words. How do you insulate yourself from the “what did I do wrong?” feelings, the “maybe if I try harder…” feelings, the just plain jealous, wounded feelings that surge up over the triumphs of another child-particularly one close to your own child’s age-and then the guilt feelings of knowing you SHOULD be taking unalloyed pleasure in the achievements of someone else’s little genius. Those are real feelings and they should be part of the empathetic baggage of all of us.
    So we return to the dilemma of what we emphasize in Down Syndrome News. Certainly there is enormous need to contradict the public image of non-human quality. We hope we speak to professionals who need a new look at their own preconceived ideas of Down syndrome. We hope to provide articles that parents can clip and recommend to their own range of contacts. We need to interact with one another as parents and encourage one another with reasonable expectations, ideas for implementation, fun and tears. Let us be sure that we are not reduced to bragging, to misleading claims (as when someone has aided and abetted some achievement without documenting that help), or to building our own egos at the expense of someone else’s dignity and despair.
    Our advocacy is for every single child born with Down syndrome, not just the cream of the crop!
    http://www.riverbendds.org/index.htm?page=feb03.html

    • kathy ratkiewicz says:

      Mark, could I edit that? I did not mean it to sound like i thought that video was lacking. I just meant in general, I think that it is not good to exclude higher needs individuals when we are talking about Ds, because those individuals are a part of the community, too, and we should show that we value the person, not their level of ability.

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