let down syndrome define you

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Moxie, my love. It seems that some kids aren’t letting Down syndrome define them. It seems that some kids aren’t getting the memo that they have Down syndrome.

Seems like some parents are tickled that their child with Down syndrome is acting more like a typically developing child than not. That is, when their child is growing, learning, speaking, moving and acting as a typically developing child would at the same points in time. They don’t want their child to be “defined” by Down syndrome.

Moxie, I want you to get the memo that you have Down syndrome. And I want you to be defined by Down syndrome.

You know why?

Because Down syndrome gives you something that only one in seven hundred people have: your extra chromosome.

The way that your extra chromosome expresses itself is a part of what makes you, you.

It’s more than the physical pieces – your lovely eyes, crinkly ears, petite size – it’s the way your brain works. It’s a part of how you receive and process information. It’s the way you see and interact with your world.

Down syndrome is like the feet upon which you stand – it’s a part of you. It can carry you forward, it can move you in new directions if you allow it.

It’s like me and my deafness and my own mental pieces.

I am deaf and will always be. I am also neurodiverse. The total package of these bits are also things that I stand upon that propel me forward. They move me in new directions as I lean in and appreciate what they give me.

They give me a lot: a sensitivity to the world. The wherewithal to see language in movement. Creativity and energy burst out of my seams. I appreciate color, light and beauty so much that a new shade combination found in nature can literally make my day.

They give me keen empathy and sharp intuition, based both upon my ability to hear what is not said and my ability to pick up on emotions.

The thing about my disabilities, my love – and the same with yours – is that they are not well understood and they carry stigma with them. The positive sides of our disabilities are not well known. We are thought to be broken people, needing of fixing – you, with supplements and therapy; me with hearing aids.

But I don’t think we are broken.

I think we are whole and are exactly as we should be.

I am proud of my non verbal strength – my ability to understand what is not said. I like the creative flares in my mind and I appreciate being able to step back and be still and feel solutions come to me. I am grateful that I can feel what others feel. Despite the world being inaccessible to me at times, despite discrimination and prejudice I have faced, I like being deaf. I like my disabilities.

I want you to like having Down syndrome.

I want you grow up knowing the beautiful aspects of the pieces of you that come with your syndrome. I want you to grow up saying with pride,

My Down syndrome defines me

I want you to be defined by Down syndrome as I am defined by my deafness, as Temple Grandin is by being autistic, as Kathy Martinez is by being blind, as Neil Jacobson is by having Cerebral Palsy, as Judy Heumann is with Post-Polio.

I want you to be defined by your disability as all of us who have learned our disabilities are an integral part of ourselves are. I want you to see Down syndrome as a fundamental part of your identity, and to claim it as the powerful piece that is a part of your human experience.

We are not who we are “despite” our disabilities; we are who we are because of them.

You and I, my beautiful child, we both move through the world on the framework of our disability.

Our disabilities speak nothing of our capability – the word “disability” has nothing to do with our ability, right? It never did. It’s only a word that, for want of a better one that everyone can agree on, collectively embraces all of us who speak, move, see, hear, think, feel, learn, grow and live in ways that are directly related to a part of our body that is different from mainstream.

We are not broken. We do not need fixing. We are whole and precisely as we should be.

Moxie, my love: You have Down syndrome.

The world may not always be accessible for you. You have already faced discrimination and prejudice and you are likely to face more.

So let Down syndrome define you

Let Down syndrome define you: move forward and be who you are because of who you are.

Be who you are because disability is a fundamental part of you – and embracing your disability will give you the strength to not only navigate an inaccessible world, but to help create a world that accepts us all.

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  1. Just found you… you hooked me with this piece! I have an awesome kid who is 8 and one who is 16 one happens to have DS. I’ll check out the rest of your blog later!

  2. lyndi2014lyndi says:

    A wonderful essay! Thank you!

  3. One of the first things out of my son Teddy’s mouth when he introduces himself is “I have a disability, I have Down syndrome.” At 32, he wants people to know this about him. For him, it is a sense of pride. It is through his lens he sees the world differently than I do and he wants to be sure people know this. He isn’t trying to pass as nondisabled – that would be fruitless – he is who he is and that’s OK.

  4. flutistpride says:

    1. I feel the same way! Ask a vocalist and you’ll hear stuff like “I’m a tenor” or “I’m a soprano” and not “I happen to have a bass range.”

    2. I want that rainbow jacket.

    An autistic female (counter)tenor

  5. I have lurked so long I feel I know you. I loved this post, as I love all of your posts. It’s thought-provoking. I absolutely love your pictures of Moxie (&her wardrobe!) in this post. How perfect.

  6. Patricia mera says:

    Oh this is lovely! Just found your blog through instagram and so happy that I did. What a wonderful letter to your daughter! My son is 22 months with Down syndrome and is my everything. I hope I can pass this type of self love to him. Also the pictures are beautiful!

  7. Katherine says:

    This article needs to be translated into every different language in the world and distributed. It resonates with everything in life. Brought happy tears to my eyes and chills all over! Beautifully written!

  8. Sruthi Muralidharan says:

    Absolutely love this post! Thanks for writing it!

  9. Kellie Haigh says:

    This is so radical, so wise, and so true. Thank you.

  10. I love you and your precious children. I love that you are able to give a real perspective on what having a “disability” in our current society feels like truthfully and honestly (and how challenging it is to be different in our homogeneous society). All the memes in the world are not going to change the fact that there is still much misunderstanding and stiigma when it comes to Down Syndrome and the only way we can change it is by first acknowledging it. I feel we have confused equality with sameness. Every child deserves equal opportunities but each child is different and has their own unique set of gifts. Let us instead recognise and celebrate diversity and the full spectrum of human experiences instead of constantly measuring someone’s worth against an arbitrary set of abilities or achievements. The fact is that some things cannot be measured but instead need to be felt. Moxie is gorgeous and reminds me so much of my active, crazy, spirited and sometimes naughty and bold wee girl.

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