NDSC Calls For Community Action on #UnacceptableExample

National Down Syndrome Congress Logo

When I started talking about #UnacceptableExample, I wasn’t sure what results to expect.  As word spread and parents responded, it became clear that change would be necessary.  Lily Eskelsen García would HAVE to respond to this level of criticism.  Eventually, she did respond. She offered an apology.  Some accepted and moved on. Some doubted her sincerity. … Continue reading

Why The Discussion About #BornThisWay Is As Important As The Show Itself

The biggest communication problem is we do not listen to understand. We listen to reply.

“Although personal interaction is the most effective medium for conveying the personal experience of disability, the mass media can be an effective vehicle for bringing about greater understanding, and a consequent gradual change in public perceptions, of people with disabilities.” – Marilyn Dahl (The Role of the Media in Promoting Images of Disability- Disability as … Continue reading

#BornThisWay – Reactions from Josh’s Mom

#BornThisWay cast

I’ve been waiting for what seems like F-O-R-E-V-E-R to see Born This Way on A&E. I can honestly say it did not disappoint! I started getting goosebumps when I saw cameras following my friend Sean around the NDSC convention in Phoenix. The idea of someone I knew being on network television was surreal. The idea … Continue reading

A Problem with “The Down syndrome” Narrative

In the Down syndrome (Ds) community, there are those who oppose awareness campaigns citing the “disability porn” problem.   The basic argument being that people with Ds are not always happy, cute, “angels” and they should not be used as instruments of inspiration. I agree – to a point.  I fully support the right of anyone … Continue reading

Confessions of a confused special needs parent

#RaceAndDownsyndrome

When a child has “special needs” he/she is not the only one who gets a label.  Suddenly, the parents are “special” too. You’re expected to be so many things: teacher, therapist, advocate… the list goes on and changes from day to day. “Special needs parent” can be a heavy identifier. One of the good things … Continue reading

Race and Disability – An issue that needs more awareness #DSAM2014

We all have equally fabulous lives

According to a study published in 2002, the life expectancy for white people who have Down syndrome is at least twice that for people of color who have Down syndrome. Differences among racial groups in general, and the heart defects typically associated with Down syndrome do not account for the extremely large gap that this … Continue reading

2 Cent Thursday – When the Truth Hurts

2 cent Tuesdays on Walkersvillemom

This one couldn’t wait until Tuesday – I hope you’ll forgive me. Two articles recently published in The Daily Mail (UK) have caused a great deal of hurt in the Down syndrome community.  I’ve always believed in the notion that each person has a right to their own perspective – their own truth.  Along with … Continue reading

Difficult Decisions

During Down syndrome Awareness month there are so many things we can focus on and talk about to raise awareness/acceptance.  We can start with the debate about those two words and whether pictures and happy stories do enough toward advocacy.  I think bringing attention to the difficult decisions parents are making every day does more … Continue reading

What Being Rejected By Family Has Taught Me about Down syndrome Awareness

I’m one of those people who believes that everything happens for a reason.  There is, however, one aspect of my life that I struggle to comprehend – why certain members of my family choose not to know my son. I know that it has more to do with me, my faults, and mistakes.  I’m the … Continue reading

Dreams, big, small, & gargantuan

USA road trip map

  Every now and then, I get the urge (and the time) to dream. Sometimes it’s a small dream, like, “wouldn’t it be nice to have a huge chocolate sundae?” Sometimes it’s a little bigger and involves finding just the right job or place to live.  Every now and then I allow myself the luxury … Continue reading

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