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What our community needs for World Down Syndrome Day

In my awesome and snarky online group for parents and family members caring for their loved ones with Down Syndrome, we decided to protest the macabre parade of disability porn that gets sent to us each year around this day, March 21, 2021, and also the ENTIRE MONTH OF OCTOBER.  I'm certainly learning more about abilism myself but the disability porn (I'm totally guilty of this in past years and I'm learning more so trying to do better) gets a bit much when it's all magic and bubbles when we're in the thick of having our folks deemed equal as humans, worthy of mistakes, mess, and adequate health care.

I'm thinking instead of blasting balloons and rainbows (I FREAKING LOVE RAINBOWS AND BALLOONS), I wanted to say more about what I need for my daughter, who is learning to write and self advocate but is still needing support. 

I need you to listen more to self advocates with Down syndrome. They should be centered, not me as a parent.

I need you to check your politics and how you vote.  Are you supporting initiatives that support my kid with Down syndrome NOW? In the future?  Supporting her emotionally, spiritually, and even financially: sharing tax dollars to those who need community supports?

I feel the energy when you tell me "Oh she's so sweet. She's so fun. She's such an inspiration,"  then you turn and shout that government shouldn't be a place to help those in need, "folks gotta help themselves."

My husband and I are very privileged and we're helping our daughter.  We also want others WITH LESS PRIVILEGE TO ALSO THRIVE AND GET HELP.  We like supporting others with less and we like LIFTING OUR COMMUNITY MEMBERS UP.

In summary, can you check yourself for World Down Syndrome Day?

Can you check your privilige?

Can you vote for initiatives that help adults with Down syndrome live LONG and integrated in loving community LIVES?

Can you ponder your voting, your financing, and where your heart is as you slip on those 'crazy socks'?


My kid Josie, with Down syndrome and autism, came to this world to LIVE, journey, and make messy mistakes and learn life lessons.  She needs to be allowed to be human, and to be integrated and seen, and be apart of community, authentically.  You can show up for her.

Happy World Down Syndrome Day.




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