Category Archives: Advocacy

Missouri Families and Lawmakers Fight to Save Sheltered Workshops

M is for Missouri on the #AtoZChallenge by The Road We've Shared

A new Missouri state resolution reaffirms the state’s support of sheltered workshops after disabled people and their families band together to “protect the right to choose sheltered employment as a valuable work choice.”

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What would you talk to your Congressional leaders about if you had the chance?

There are two events coming up, at the end of March/beginning of April, that are aimed at advocacy in the disability and Ds community and meeting with Congressional leaders on The Hill.  The first is the 2017 DISABILITY POLICY SEMINAR (DPS), a 4-day event (March19-22) hosted by: American Association on Intellectual and Developmental Disabilities (aaidd), The Arc, Association of University Centers on Disabilities  (AUCD), National Association of Councils on Developmental Disabilities (NACDD), Self Advocates Becoming Empowered, and United Cerebral Palsy.  The second, is the annual Buddy Walk on Washington (BWW) (April 4-5) hosted by the National Down Syndrome Society (NDSS). Continue reading What would you talk to your Congressional leaders about if you had the chance?

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.

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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.

Continue reading #CountUsIn – Co-presenting with NIH on #RaceAndDs

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.

 

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