Sometime during the ‘90’s, while my son was in grade school, someone decided that he could not, and would not learn to read. No one ever said it explicitly, but with the benefit of hindsight, I know it to be true. I came to this conclusion about a decade later while […]Read More Whose Goals?
After Thursday’s vote in the House I wondered how many of our so-called friends, those who claim to be advocates in our corner, voted in favor of the AHCA.Read More House Passage of the AHCA: Did Members of the Down Syndrome Task Force Fail Us?
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. […]Read More NDSC Calls For Community Action on #UnacceptableExample
“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 […]Read More Why The Discussion About #BornThisWay Is As Important As The Show Itself
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 […]Read More #BornThisWay – Reactions from Josh’s Mom
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 […]Read More A Problem with “The Down syndrome” Narrative
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 […]Read More Confessions of a confused special needs parent
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 […]Read More Race and Disability – An issue that needs more awareness #DSAM2014
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 […]Read More 2 Cent Thursday – When the Truth Hurts
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 […]Read More Difficult Decisions