By Ye Lei

Once again, I sat in the familiar chair in DSi’s meeting room, two pages full of work reports spread out in front of me. Nathan asked what tea I’d like, but I waved him off and said I needed to go over a few things first. Soft laughter filled the office—they’re used to me putting work before everything else.

For twenty minutes, I spoke quickly, laying out all my progress, problems and reflections from the past two months. Once I finished, a huge weight lifted off me. I then headed to the main office to chat with Anna and the rest, sipping milk tea and laughing together, just like catching up with old friends.

Then Robin pulled me in for an interview. He wanted to follow up on how the self-advocacy empowerment workshop we held last year had worked out. They lined up question after question. Thankfully, I spend most days working directly with the local community; otherwise, I would’ve struggled to keep up. Before I knew it, two hours had slipped by.

Nathan hurried off to print formal thank-you letters for recognition. I pulled out my phone to snap a photo as he signed them. I also rounded up everyone in the office for a group picture. Those who know me well are aware I almost never appear in photos for work—my last group shot was taken the day I joined DSi as a member, when Nathan insisted we take one. Today, Andrew, the CEO, happened to be there too; I’d visited several times before and never crossed paths with him. He kindly posed with me in front of the world map.

I pointed to China on the map and gave a thumbs-up.

This wasn’t for myself. It was for the interests of people with Down syndrome in China, and for my country.

These two hours summed up years of my work: from grassroots on-the-ground support to international advocacy, from helping individual families to pushing for better policies. Every step has been tough, yet every step has been worthwhile. The scent of tea hanging in DSi’s office carried exhaustion, joy, the warmth of being recognized, and above all, my resolve to keep going.

As Nathan put his signature on the letter, I thought to myself: this is what persistence means. It’s not about gaining attention for myself. It’s about making sure people who deserve to be seen finally get their voices heard.

October is Down Syndrome Awareness Month, a time to celebrate people with Down syndrome and advocate for their rights.

This year, we are focusing on a critical issue that affects the lives of millions: health equity.Health equity means that everyone has a fair and just opportunity to be as healthy as possible.

Unfortunately, for people with Down syndrome and other intellectual disabilities, this is often not the case. DSi’s recent global consultation on health equity, conducted in partnership with Humanity & Inclusion, has highlighted some of the barriers people with Down syndrome face when trying to access healthcare.

These include:
1. Unaffordable healthcare
2. Discrimination and denial of care
3. Lack of accessible information
4. Exclusion from decision-making

Learn more about what we advocate in our report.( Easy read version)

What are we doing about it?

At Down Syndrome International, our vision is a world where all people with Down syndrome are fully included in society.

This includes being able to access the healthcare they need to live long, healthy, and fulfilling lives.

We are working with our member organisations around the world to advocate for changes in policy and legislation to promote health equity.

We are also developing resources to empower people with Down syndrome and their families to speak up for their right to health.

https://ds-int.org/its-down-syndrome-awareness-month

　　The Congress was a groundbreaking event.

　　People with Down syndrome, their families and supporters, came together to share their stories, learn from each other, and make plans to help everyone join in and be part of society.

　　The success of the Congress inspired the organisers, Jo Mills (Canada), Penny Robertson (Australia), and Sylvia Escamilla (Mexico), to form an international network of organisations working to improve the lives of people with Down syndrome.

　　Down Syndrome International was founded in 1993, with a mission to make the world more inclusive for people with Down syndrome.

　　In October 2023, on our 30th anniversary, we launched a new strategy to guide our work into the future.

　　Down Syndrome International today.

　　Today, Down Syndrome International is a network of thousands of people with Down syndrome, along with their families and supporters, and more than 150 organisations, from every part of the globe.

　　Together we speak up for the human rights of people with Down syndrome worldwide.

　　We share a vision of a better world where all people with Down syndrome are fully included in society.