By Lena Ye

I

We used to call people with Down syndrome "Tang Babies". It sounded such a sweet, gentle term. Soft and endearing, it instantly stirred people’s desire to care. Those who used the name thought they were being kind; those addressed felt sheltered and looked after. We stuck with this name for years, never stopping to question if it was right.

To me, it was an affectionate nickname, a warm way to show goodwill. That changed during a self-advocacy training hosted by DSi. The trainers pointed out that the term may trap people with Down syndrome in perpetual childhood. “‘Baby’ implies you’ll always be a child—always needing others to take care of you, never allowed to make your own choices. Do we really want to keep using that?”

We were caught off guard. None of us had ever considered this angle before.

II

DSi’s trainer suggested we switch to the term “young adults with Down syndrome”. The simple words that carry age, identity and place in society. It states clearly: this is an adult with their own opinions, entitled to make their own decisions.

At first, the shift felt awkward. After years of saying “baby”, the new phrase seemed to lack warmth somehow. Yet something remarkable happened once we made the switch.Our whole attitude shifted along with the name. When we called them “babies”, we naturally spoke to them in the patronizing tone adults use with small kids: “Well done!” “Good boy/girl!” “Would you like that?”

Now that we say “young adults with Down syndrome”, our tone shifts to equal dialogue: “What do you think?” “How do you see this?” “What’s your take?” Their responses changed as well. When labeled “babies”, they used to waiting for others to plan everything—accepting whatever they were told, resigned to being cared for. Called young adults, they began speaking up freely: “I want to…” “I don’t want to…” “I think we could do it this way…”

This single name change flipped a switch for both sides, guiding us all into brand-new roles.

III

Kun Kun is one of our young adult partners with Down syndrome.

At a group workshop, she stood up unprompted and said, “I’ll be the host to keep our meeting in order.”

No one assigned her the role, no one asked if she wanted to give it a try. She simply believed she was capable and volunteered.

She sat at the front, calmly reminding everyone to quiet down, calling on speakers and tracking time—carrying out her host duties with complete confidence.

Her greatest achievement left me utterly amazed. Kun Kun represented UFDC at the United Nations to deliver a speech in Chinese, sitting calmly on that global stage.

Faced with a room full of international delegates, she showed no nerves, forgot none of her lines, and kept steady body language. When she finished speaking, she smiled and sat tall, radiating poise.

She did not shrink from the label of Down syndrome, nor feel intimidated by the UN setting. She simply delivered her prepared words steadily and composedly.

Back when we still used “Tang Baby”, our first thought would have been doubt: “Can she really handle this?” We’d worry, hesitate, and make decisions for her: “We’d better do this for you.”

Now that we refer to her as a young adult with Down syndrome, when she volunteered to host or said she would speak at the UN, our immediate reaction was, “Go for it.”

And she pulled it off brilliantly.

IV

I know another young woman with Down syndrome named Lin Jiayi. Years ago at a forum, she stood up of her own accord and said, “We grow freely, unconfined.”

She used the word “we”, grouping herself with the broader Down syndrome community. She was not speaking on behalf of others—she spoke from her own truth. Back then we hadn’t adopted the term “young adults with Down syndrome”, yet her actions already proved that people once labeled “babies” can hold clear independent thoughts and voices.

Later, at an informal discussion, we talked about a tough topic: what to do when parents oppose romantic relationships for people with Down syndrome. Everyone shared their views, but Jiayi stayed quiet until I asked for her perspective. After a two-second pause, she said softly but sharply, “Then don’t get married.”

Her words were quiet, yet cut straight to the core of the issue.

Sadly, she stopped joining our gatherings afterward. Her mother told us Jiayi felt pressured, forced to answer questions when she did not wish to. This sharp-thinking young woman still felt powerless in a space where participation was expected of her.

We cannot stop at merely updating our vocabulary—we must also rebuild the frameworks we operate within.

The divide between Kun Kun and Jiayi lies here: Kun Kun volunteered as host and spoke at the UN within a space that respected her right to choose freely. Jiayi’s discomfort stemmed from an unchanged system that pushed her into passive participation.

V

The term “Tang Baby” carries no malice; it is rooted entirely in love. But love comes in two forms: one coddles another as a precious child, the other respects another as an independent adult.

“Tang Baby” falls into the first category. It locks people with Down syndrome into a stage where every major choice is made for you by others. “Young adults with Down syndrome” embodies the second kind of love. It welcomes them into adulthood, autonomy, and the power to decide their own lives.

A name may seem like nothing more than a few rearranged words. But once you truly commit to using the new term, you will notice a profound shift: how you look at them, how you speak to them, and what you believe they are capable of. And in turn, they will rise to match the mature expectations you hold for them.

VI

This experience taught me a vital truth: Names are not just superficial manners of speech—they define the entire dynamic between two people. How you address someone shapes how you treat them. If you treat someone like a child, they will remain stuck in that childlike role. Only when you see them as adults can they grow into full, independent adults.

So if you know young people living with Down syndrome, try making this small shift in your language. Instead of “Tang Baby”, call them “young adults with Down syndrome”.You will find far more changes unfold than just a new label. Your perspective of them, your bond with them, their self-image, and the entire way you interact will all shift.

It may only be a name—but sometimes, a name changes everything.

-- This article is dedicated to every person with Down syndrome stepping out of the label of “baby” and into the identity of a young adult.

Dear participants of the joint letter,

Since we released the initiative letter "Revise Articles for Baidu" on October 8, appealing to remove the term "congenital idiocy" from Baidu Encyclopedia entries, we have received signatures from all over the country. Below is the signature statistics as of October 31: more than 65% of the participants are individuals with Down syndrome and their family members. Including signatures from offline activities, the number of supporters is nearly 600. The initiators of this activity—the young people with Down syndrome who wrote the initiative letter—are deeply encouraged and would like to express their sincere gratitude to all supporters with a bow!

After we submitted online feedback and a written courier to Baidu Encyclopedia, we received the following SMS response:

[Baidu] Dear Baidu Encyclopedia user, there is an update on your feedback submitted at 16:53 on October 30. Customer service reply:

Dear user,

Thank you very much for your feedback~ The content of your feedback will be verified with the assistance of authoritative experts. It will take some time to contact experts for verification, and the accurate content will be corrected as soon as possible. Thank you for contributing your knowledge! If you encounter any errors while browsing entries in the future, please feel free to feedback to us immediately. Every correction you make will help hundreds of millions of netizens obtain correct information. Thank you again for your contribution! If you need to add feedback or have other needs, you can submit it again via https://ufosdk.baidu.com/ufosdk/postview/SvqAelGgmF%2B0Ei8wfHqZOA%3D%3D/222642?channelId=36861. To improve our service quality, we sincerely invite you to evaluate this feedback experience at https://iwenjuan.baidu.com/?code=8ffgco.

This progress is the result of the joint efforts of all of us!

Upon further inspection, we've found that the cleanup for a doctor's column on Baidu Health Medical Encyclopedia is not yet complete. While discriminatory language is no longer visible on the main page, the term "congenital idiocy" still appears in the detailed sections.

Thank you to everyone for contributing to eliminating discriminatory language and raising awareness of fairness and respect — a special thank-you to the editors of Baidu Encyclopedia for their revisions. The progress of a society's civilization depends on the kindness in each of our hearts and our quiet commitment to upholding the dignity of all life.Today's small step signifies the hope for greater progress. Thank you for this journey—let us continue our efforts!

By: Jennifer

A week after the four-day "self-advocacy" training, I am still reflecting on it. For such a workshop, all expenses—nearly RMB 85,000 yuan, covering the trainers' fees, round-trip air tickets, transportation, visas, accommodation, and training venue costs—were sponsored by the family of Ying Yue, a young person with Down syndrome from Shanghai, except for the participants' own accommodation. If this sponsorship is filled with the noble act and affection of a Down syndrome family, then why did all the on-site support and reception come from volunteers? The crystal bowl concert on the last night of the training was also a charity performance by professional musicians. What drew so many volunteers to participate wholeheartedly?

(A family photo of Zhang Ping, Ying Yue, and Ying Ping. We pay tribute to their righteous deeds.)

The two facilitators came from the UK, headquarter of DSi (Down Syndrome International), bringing the concept of "self-advocacy". Why is it important for people with Down syndrome to learn to speak up for themselves and take charge of their lives? Because many of them have never achieved this, or even realized that life with Down syndrome could be lived this way. All beings are equal. Helping them understand their rights, learn to stand by their own views, and refuse being overly arranged is to let them grasp the basic initiative of their lives. What this defends is the shared dignity we all possess as human beings.

In the classroom, five young people with Down syndrome formed a learning community with other participants. The perspectives and needs they raised regarding their own development are profoundly practical:

- "Chat with me": People with Down syndrome have unique communication traits. Due to slower reaction, simple language works better; weak muscle tone leading to unclear pronunciation, they need more patient listening. Yet, interacting with them, we often forget to empathize. When we use complex phrases like "What have you learned from this training?", our peers with Down syndrome often respond, "I can't put it into words. Why don't you say it?"

Ying Yue, a young person from Shanghai in my group, selected the 10 most recognized communication tips through on-site voting, which serve as practical guidelines for effective communication with people with Down syndrome: 1. A relaxed safe environment, accompanied by trusted relatives; 2. Simple understandable language, avoiding complex sentences; 3. Shared topics that both sides enjoy; 4. Listening with respect and responses; 5. Patience and a slower speaking pace; 6. Appropriate guidance; 7. An equal perspective; 8. Visual aids (like pictures); 9. Learning to refuse when privacy is involved; 10. Regular chats.

(The picture shows Ying Yue, a young person with Down syndrome from Shanghai, counting on-site votes to select the 10 most recognized tips for communicating with people with Down syndrome.)

- "I want to work": Employers hiring people with Down syndrome have multiple benefits. Zha Junkun, a young person from Shanghai, and her group-mates encouraged other groups to summarize their findings, and we heard points like "government subsidies" and "people with Down syndrome have a strong sense of rules". She also shared her real experience of securing a job through professional training. When Junkun proudly said, "I work at the front desk of a café, in charge of reception," her pride was palpable.

(The picture shows Zha Junkun, a young person with Down syndrome from Shanghai, sharing her experience of receiving training and getting a job.)

- "My healthcare, my concern": Given that some hospitals lack experience in treating patients with Down syndrome, these young people expressed their expectation for "more understanding in medical services"—voicing their attention to and advocacy for their own health rights.

(Well-engaged discussion on the topic.)

Unknowingly, the pet phrase of parents of children with Down syndrome has shifted. What used to be "Tang Bao" (Down baby) has become "people with Down syndrome" or "young people with Down syndrome". One volunteer participant sighed, "I used to be so focused on becoming what others wanted me to be that I never really thought about being myself." It was a thought-provoking remark. "Self-advocacy" is never limited to a specific group. Learning allows us to see ourselves through each other. Are we inspiring people with Down syndrome, or are they inspiring us?

Learning alongside people with Down syndrome allowed a firsthand experience of their simplicity, directness and purity. They laugh when they're happy, and they admit not knowing when they don't. Being with them makes me feel simple and joyful. Yet, when you look closely at the demands put forward by these young people, each is a specific, actionable suggestion—hardly "simple". Could improving medical services for people with Down syndrome start with learning how to chat with them? When enterprises hire people with Down syndrome, beyond government subsidies, can they recognize their strong sense of rules?

Simple and pure human connections can ease the mind; the feeling of mutual help and mutual need truly brings happiness. What attracts volunteers is, in essence, something simple. But there's also something profound: Lena Ye, the founder of Up for Down's China, mentioned to me her great life wish— to bring the World Down Syndrome Congress to China. As an ordinary person, I was deeply moved: "Have I ever had such a great wish?" When someone around you makes a grand wish for others' lives and persists in it for years, joining them feels like the best choice. The musicians who came for the charity performance probably share the same thought.

This guide helps people learn how to run self-advocacy groups for people with Down syndrome. Contact us to get a free copy sent to your email address.