Category Archives: Advocacy

When Going To The Movies Is An Act of Defiance – Taking Back Our Joy

#JusticeForEthan
Thank you to Connor Long for this photo.

Why would you plan an event to honor Ethan at a movie theater of all places?

It’s a valid question. Since Ethan’s death, movie theaters have become traumascapes – places that trigger anxiety and depression – for many people, myself included.

Continue reading When Going To The Movies Is An Act of Defiance – Taking Back Our Joy

Making Others See – Politics in the Down Syndrome Community

All too often the Down syndrome community specifically, and the disability community in general, are left out of important political debates. We are typically impacted by the same civil rights issues as other minority groups, sometimes even more so because of the intersectionality of disadvantage.  The problem is, the disability perspective doesn’t usually get nearly as much press. Continue reading Making Others See – Politics in the Down Syndrome Community

Not JUST an Actor – Connor Long and John Franklin Stephens

"I have always believed that when you have a voice, you have an obligation to use that voice to empower others."

They say that with success comes responsibility.  Today we’re going to put the spotlight on two young men who don’t take that responsibility lightly.

Connor Long and John Franklin Stephens have both starred in films and both lend their voice to important advocacy campaigns as well.

Continue reading Not JUST an Actor – Connor Long and John Franklin Stephens

Season 2 of Born This Way Digs Deeper and Stays Real

During the first season of A&E’s groundbreaking Born This Way, we got to meet seven young adults with Down syndrome and their parents. In six short episodes, fans fell in love with these dynamic individuals. Critics did too. So much so that the show has been nominated for three Emmy awards including Outstanding Unstructured Reality Program and received a Television Academy Honors Award.

Continue reading Season 2 of Born This Way Digs Deeper and Stays Real

Responding To The Community – Born This Way at the 321 eConference

When Born This Way aired on the A&E Network, it prompted mixed emotions from the Down syndrome parent community.  Strong emotions. I pondered long and hard about why those emotions came to the surface, and how we could help bridge the gap between parents who loved the series for the awareness it provided and those who experienced a level of grief because of what they saw. The “Born This Way – Building Support Systems Track” is a result of that search.

Continue reading Responding To The Community – Born This Way at the 321 eConference

#CountUsIn – Co-presenting with NIH on #RaceAndDs

racial disparities exist

For me, the highlight of this weekend’s Down Syndrome Affiliates in Action (DSAIA) conference was the presentation is was honored to co-present.  For the first time in 18+ months since I first wrote about the racial health disparities that exist in the Ds community, I felt like we might be moving forward.

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Disability Day of Mourning

Today is a day set aside to remember a group of people we have lost to soon.

People with disabilities who were killed by a family member.

From the memorial site:

Every year on March 1st, the disability community comes together to remember the victims of filicide – people with disabilities murdered by their family members. Vigils are held on the Day of Mourning in cities around the world.

We have identified 20 individuals who had Down syndrome on that list.

 

[scribd-doc doc=”301486713″ key=”YiTN2ZQ6mciCOgSnplM6″ mode=scroll]

There is no excuse, no reason that makes it understandable.

NCCJD – Advocating For Justice in the Intellectual Disability Community

There is no shortage of opportunities for us to help create change in our world today.  We all have our reasons for why we choose to support (or not) a particular issue. When it comes to advocacy, we are usually motivated by causes we identify with.  If we can picture ourselves or our loved ones being affected by a certain problem, we’re more likely to invest our own time and energy to fix it. What about the issues that we don’t allow ourselves to connect with? Who fights to fix the problems most of us just don’t want to acknowledge?

Continue reading NCCJD – Advocating For Justice in the Intellectual Disability Community

Politics and Language. Can parents #SayTheWord ?

Disabled. #SayTheWord

In our capitalist economy, our children with Down syndrome are seen by some as less than – not able to be “contributing” members of society.

So we fight.

We fight language in an effort to change perceptions. We fight against the “R” word because it demeans our loved one. We fight for person-first language in hopes that it will somehow convince people to care. We hope with all our being that saying our child is “a person who has Down syndrome” instead of “Down’s Syndrome child” will help society see the person before the label. Lately, we’ve even started using the phrase “happens to have Down syndrome,” perhaps hoping that people will see this person we love with all our hearts as we do – a human being – and not a drain on society at best, someone who should not have been born at worst.  We cling to phrases like “More alike than different,” because we feel the only way to create change is to convince society that people with Down syndrome aren’t so odd that they should be made fun of, or worse yet, ignored.

Continue reading Politics and Language. Can parents #SayTheWord ?