Beyond Awareness

October is my favorite month of the year for many reasons; Halloween, pumpkin flavored everything, football, apples and cider, a chill in the air, turning leaves, hay rides, scary movies, footie pj’s, and tights. So here it is, October 1^st, and I’m enduring an internal debate. I’m exhausting myself (as per usual).

This month highlights awareness campaigns for Down syndrome (DS), domestic violence (DV), & breast cancer. These 3 are big in my world and 2 of them have had great success in making us aware. Thanks to recent news surrounding the NFL, DV is finally starting to get the attention needed for real change. I pray the world doesn’t get bored and move on.

As I think about how I want to honor DS I can’t stop wondering, “what is normal?” What does it mean to be low or high functioning? What does a typical family or typical existence look like and how is that so different from my own? Disability is normal. It is a part of the human experience whether it happens prior to birth or later. Whether it is 'cured' or managed.

Everyone has challenges. Everyone. Sometimes they are financial. Marriages fall apart. Families are blended. Single parents do the work of a village. People lose jobs or get diseases. Those living with mental illness are stigmatized and are failed by a broken system. Our LGBT community still fights for fairness within the law and for the right to walk down the street without being brutally assaulted or shunned by our families. Addictions and sexual assault are commonplace. Sometimes through accidents or illnesses our loved ones pass away too soon all the while we continue to get older every day. Which of these are abnormal?

Awareness campaigns come from a wonderful place. When you are aware that early detection can increase your chances of surviving breast cancer, you’re more likely to feel your boobs and see your doctor. When as a society we begin to hold abusers and sexual assaulters accountable for their actions, survivors will be more likely to seek help and hopefully violence will lessen. When we tell you that language has power, those with compassion choose words that don’t demean. The invisibility of Autism dissolves as others comprehend public meltdowns.  As we continue to demand equality, our kids with special needs will receive the supports and services they need to thrive in school and in the community throughout their lives.

Those of us involved with Down syndrome awareness open our lives to the world. We let you into our private spaces to witness the gold, the shit, and the mundane so that we are no longer outliers, invisible pariahs and therefore irrelevant or scary. We strive to create a society where normal means acceptance, inclusion, equality. In doing so we support others facing similar challenges. We aim to make the world a safer place and I know we have.

And yet I’m restless. I’m beyond awareness. I want revolution and I want normalcy. My life’s work is to battle loud and fierce regarding; housing and program wait lists, budget cuts for education, supports, and services, funding and access to disease cures, legalizing medication that is long overdue, rights for all regardless of ethnicity, genitalia, religion, or who we love. I dream of a time when all of us are normal, where knowledge and understanding are so commonplace that what currently makes us outsiders will be nothing more than attributes to describe our existence to one another.

8th World Down Syndrome Day

This is Sophie’s first professional photo with her daddy holding her.  It was inspired by the cover photo of a book that was very important to me after our prenatal diagnosis of DS called, Gifts, Mother's Reflect on How Children with Down Syndrome Enrich Their Lives.

Why March 21st?  Down syndrome, also known as Trisomy 21, means that instead of having a pair, people with Down syndrome have 3 copies of the 21st chromosome.  That’s what makes 3/21 our special day.

This is a karyotype, or picture of Sophie’s chromosomes.  You can clearly see the trisomy of #21.

In honor of our daughter and all our bazillions of lovies with DS around the world, please enjoy this video created to celebrate this special day by the International Down syndrome Coalition.

While today is a day to celebrate our loved ones with Down syndrome, it is critical to point out that we have SO MUCH work to do in this world of ours.  Our loved ones with disabilities are far more likely to be abused in all forms and repeatedly throughout their lifetime.  Our culture still supports exclusion in our language making the Spread the Word to End the Word Campaign so important.  Our children are still being denied access to inclusive education with critical supports and services far too often.  More and more I am hearing of families still facing exclusion from the faith communities that should be at the forefront of acceptance.  Mothers receiving a prenatal diagnosis of DS are still given limited, outdated, and gloomy information and are often encouraged to terminate their pregnancy.  This has lead to a 90%+ abortion rate once mothers receive a prenatal diagnosis of DS.  Outside of the disability community, we face brick walls and locked doors in every direction.

It is a daily fight and it is exhausting and it is worth it.  I have to agree with Maureen Wallace in her article Down syndrome: Is awareness overdone and action overdue? when she, in righteous indignation, practically screams her demand for action.  As a community we have shown the power we have when we unite.  Although regular life is exhausting enough before adding advocacy into the mix, we need more people to pick up this mantle.  Whether people are natural leaders or not, our children teach us that we MUST be their voice.  We must take a stand and fight for their safety and dignity.  We must.  We must know our history and honor the warriors who came before us who fought for the rights our loved ones have today.  Please visit Visionary Voices, a project collecting information and stories of these warriors so that we cannot forget.

In that light and in honor of those who go to battle every day, enjoy the video below.  Oh, and happy World Down Syndrome Day!

For more who feel the same about the need for action, visit http://downsyndromeuprising.blogspot.com/

More on the R Word Campaign, 5th Anniversary

Here is another great piece on the Spread the Word to End the Word Campaign by Lawrence Downes in The New York Times, March 2, 2013.  Just think of how many people have heard our message since this movement began 5 years ago!

(excerpt) …people can be thoughtless and cruel, or well-meaning, and never know the damage their words can do. The campaign is about inclusion. History is full of stories of people from outside who fought their way in. To those with intellectual disabilities, it sometimes seems the battle is just at the beginning, when little victories — like an end to insults — are hugely important.

For the complete article, visit HERE

Take the pledge today www.r-word.org

Download the graphics, (the fb cover photo is great!), badges, posters and more HERE!

A Friend You Haven’t Met Yet

Sophie was sent home from school early on Monday.  She had put her head down at lunch and cried, refusing to eat.  She had a low grade fever, was not herself, and most strangely was unable to walk normally.  After a nap at home, Sophie was still unable to walk or bare weight without pain, so I took her to her pediatrician.  He sent us to the ER for x-rays and blood work.  The diagnosis was that a virus had settled into her right hip joint, causing inflammation and pain.

Skip ahead a few days.  She has not been able to shake her fever, is still in pain, and has begun to refuse food and drink.  So on day 4 of this illness, we returned to the pediatrician who sent us back to the ER for more testing and an IV of fluid.

We’ve been here for hours and are finally waiting for discharge.  Her blood work looks good.  The rapid strep test was negative, and the IV of fluid perked her right up.  She’s eating goldfish crackers and drinking a little chocolate milk.  They put in a catheter to test for a UTI which was also negative.  She was just dehydrated, which we knew.

Mark and I are here while Alexander and Helena have a party with our friends.  They think it’s a party anyway.  Knowing that we would end up in the ER, I packed plenty of books, toys, and the iPad to keep Sophie occupied.  I brought my laptop and have gotten a bit of work done and Mark is grading papers.  You do what you need to do to pass the time.

While skimming fb, I came across this video by John Franklin Stephens, who goes by Frank.  He’s a hero of ours and you can find another letter he wrote on the sidebar of this blog.  Frank has a way with words.  He speaks eloquently as a self advocate who will not back down to bullies who use hate speech to belittle people with intellectual disabilities.  He does so in a way that is inspiring, powerful, thought provoking, and compassionate, even to those who disregard him.  Though I won’t give the person he is speaking to a moment of my time, I am honored to share Frank’s words as he educates us about the kind of people we should all strive to be.

Thank you Frank for standing up for yourself, for Sophie and all of our friends in this beautiful community.  And with that, this family is busting out of this joint!

Happy Spread the Word to End the Word Day!

Today is the 4th annual Spread the Word to End the Word Day and it is considered a sacred holiday for our family. Today is the day that all across the globe, people are speaking up about the power of language by educating others that the use of the word retard(ed) when used in a derogatory way is hurtful to people with disabilities and those of us who love them.

This is a campaign for respect and acceptance. It is not an attempt to be Thought/Politically Correct/Word Police. In the words of Timothy Shriver, "You're allowed to be humiliating, degrading, and hurtful. I'm allowed to petition you to at least recognize what you say and be aware of the option you have to stop."

It's really that simple. We raise awareness about the words we chose to use and by doing so create a more inclusive and safe world.

So what can YOU do?
First, take the pledge at www.r-word.org
Share this message with your contacts
Watch and share the many videos on YouTube or upload your own
Use your social media websites to spread the word
Below is a photo custom designed to use as your facebook timeline cover photo

Grab this badge to place on your blog or website

I am personally asking every single one of you reading this to share this message. Do it for Sophie. Do it for all of us in the beautiful disability community. Do it for dignity.

We thank you with hearts overflowing.

For more posts about this important issue, do a blog search here by clicking on the Label below, the "R" word.

American Horror Show Pilot Review

Down syndrome, the macabre, a new tv series, a stellar cast, you have my attention.

When I learned of a new tv series on FX that would not only be scary, but feature a character with Down syndrome, I was thrilled. All too often actors with disabilities are cast in one-dimensional roles where their disabilities define their character. In the previews we are given the hope that in the case of American Horror Show, the character with DS would have a quirky personality that would contribute to the spooky theme. I could get behind that.

According to the official website on FX, "American Horror Story revolves around the Harmons, a family of three who moved from Boston to Los Angeles as a means to reconcile past anguish. The all-star cast features Dylan McDermott as “Ben Harmon,” a psychiatrist; Connie Britton as “Vivien Harmon,” Ben’s wife; Taissa Farmiga as “Violet,” the Harmon’s teenage daughter; Jessica Lange in her first-ever regular series TV role as “Constance,” the Harmon’s neighbor; Evan Peters plays “Tate Langdon,” one of Ben’s patients; and Denis O’Hare as “Larry Harvey.” Guest stars for the series include Frances Conroy as the Harmon’s housekeeper; Alexandra Breckenridge as the Harmon’s housekeeper; and Jamie Brewer as Constance’s daughter."

If you feel like you've seen this show before, it's because you have. American Horror Show goes beyond paying homage to fright films that we are familiar with. The writers lifted bits of plot points from classic horror films and threw them all together like stone soup without even an attempt to show us something original. If you are interested in a full review of the story line, camera work, or strength of the acting, do a google search and you will find a plethora of reviews. Yet while I am interested in these aspects, it is the character Adelaide who happens to have DS that has my attention.

There are spoilers so, X out now if you must. Clips are for mature audiences only.

The following clip is the opening scene to the series. Despite the thumbnail image, Dylan McDermott is not nude, though if you want to see that, he obliges many times in the pilot episode. Please watch as we are introduced to Adelaide for the first time.

Opening Scene


The next embedded scene takes place at present day with the Harmons newly moved in and Vivien stripping wallpaper. Please view but be forewarned that this scene contains horrific dialogue.

Present Day

Finally, this clip is after Addy (Adelaide) breaks in the house again and Vivien deals with her.

Last Clip

In the first minute of the show we watch as the doomed preteen twins call Adelaide a freak and then make a sexual overture to her. Clearly in the case of her mother Constance, the writers were going for shock value delivered by a truly hateful villain. She refers to her own daughter in ways that are so evil that I felt verbally pistol whipped while listening to the dialogue. She insults "brown" people and people who are homosexual as if it's normal conversation.

So, I'm in a quandary. I will watch the series, in part because I need to see how it ends. I need to see if my theory plays out that Constance and Addy aren't actually living humans but are a part of the haunted house. Yet, I am horrified by the treatment of Adelaide and I was utterly unprepared for what I saw.

In the case of the movie Tropic Thunder which garnered such backlash for its mocking of a person with disabilities and repeated use of the word retard, writer and actor Ben Stiller defended the plot as satire, which fell short of an acceptable excuse. So, how can American Horror Show be defended simply because they needed to develop a character as heinous as Constance? Even if she "gets hers" in the end. How is it that I'm the only person besides my friend Nadina that is taking about this?

Siblings

A few years ago when we were still living in the mid-west, a group of families gathered together in a hotel for a weekend of family fun. We were families joined together by the love of our children with Down syndrome who had met on-line and who had become a sort of extended family. At this gathering I met Regan, daughter to Adrienne and sister to Russell. I was struck by her beauty as I watched her lovingly snap photographs of all of our beautiful children. She is a very special young woman and when I look at her, I see Alexander and Helena's future.

Through Regan and other siblings I'm blessed to know, I have come to understand that my kids are lucky to grow up with a sister with an intellectual disability. Lucky? Yes, lucky. For Helena and Alexander, there has been no time without Sophie, without therapies, without Buddy Walks, Special Olympics, doctor appointments, patience, acceptance, and the campaign to educate about the R-word. They know first hand what it means to love someone with differences, though at present they may be too young to comprehend or put this into words.

Thank you Regan. Thank you for sharing your love of your brother in such a beautiful way. You've just uplifted and given hope to more families than you'll ever know.

Please enjoy this video:

It's Not Acceptable R-word PSA

The Spread the Word to End the Word campaign has a new PSA. It will be airing tonight 5/24/11 during Glee at 9:50. Read more about it and the talented actress and self-advocate Lauren Potter HERE

Please be advised that this PSA uses strong language.

Tim Shriver on Bill Maher's Show

I know that this blog seems like a Tim Shriver fan club lately, (maybe it is) but I'll be darned if I could pass up posting this interview. Thank you Tim for taking this man to school and for working so hard to spread the word despite being met with such arrogance and adversity.

(embedded video below)

Tim Shriver on the Colbert Report

embedded video below

I only wish Stephen hadn't closed with the gay joke.

Way to go Tim!

For Cindy and David Combs

A year ago I was honored to be introduced to my friend Cindy Combs. She is the self advocate who volunteered to go on live television with me to promote the Champaign County, IL Spread the Word to End the Word campaign and events in 2010. Cindy and I met at Developmental Services Center (DSC) a day or so before our morning show appearance to talk about the interview. DSC is an essential organization for people with developmental disabilities in Champaign County. Sophie's amazing developmental therapist Judy was from DSC and the developmental playgroup there was essential to her progress during our 3 years in Champaign, IL.

DSC staff members Janice McAteer and Kim Harris joined us and I had asked my friend Tracey Fairchild to go over what to expect during our interview as she had been doing the Morning Show for quite a while. She ran us through practice questions and Cindy brought us all to tears with her heartfelt message. Fearless and unhesitating in her responses, she talked about how hearing the "R" word hurt her and her friends with developmental disabilities. She talked about how her life is full of friends, work, and hobbies and that she is just like everybody else. In her gentle yet powerful way Cindy made her case for inclusive language which would lead to acceptance and respect for all people. I left that meeting humbled by my new friend.

On the morning of our live tv appearance, I was a bundle of nerves, but not Cindy. She and Kim had arrived at the station before I did and were chatting pleasantly. During our appearance Cindy spoke just as beautifully as she had during our practice run while I fell over my words. Listen to her message.

A couple of days ago I got a call from my dear friend and President of the Champaign County DSN. Ellen was not calling with good news. Cindy and David had been riding their tandem bicycle as they have for years when they were struck by a car. Cindy passed away. David was air lifted to the hospital where he remains in critical condition. My former community is in deep mourning and our hearts are broken. A great light in this world has gone out.

Thank you Cindy for being such an inspiration. David, we are all lifting you up in prayers.

Tributes can be left at DSC's website, http://www.dsc-illinois.org (News tab, then Blog)

Initial news coverage of the accident (HERE)

Email Campaign Calling for Justice (story HERE)

Take the "R" word pledge today http://www.r-word.org/

Budget Cuts to Special Olympics

"We have a silent epidemic in this country. Children with special needs remain the primary targets of bullies in schools across this country. Health care continues to discriminate against people with intellectual disabilities. Employers still don't have the solution for hiring people with intellectual disabilities. Special Olympics is not just a nice event...We're a social inclusion movement fighting discrimination and prejudice...The current House budget eliminated [funding]. It's not a hair cut, it's a guillotine."

---Special Olympics Chairman and CEO Tim Shriver

As I said to a friend who first alerted me to the budget cuts, maybe members of the House would like to come over and take candy from my baby as well. For shame!

This is one video you want to watch.

Visit msnbc.com for breaking news, world news, and news about the economy

Spread the Word to End the Word, Op Ed by Self Advocate

Why the word 'retard' hurts people like me

An athlete named John Franklin Stephens wrote an amazing op-ed on why the R-word hurts him. You have heard me explain why using the R word hurts me, my daughter and all of our friends in the disability community. Now it's time to read why it matters, directly from the words of an amazing self advocate. Please read John's piece and then visit www.r-word.org to sign the pledge.

So without further ado...

Using the word "retard" to describe me hurts

By John Franklin Stephens
September 1, 2008

A lot of people are talking about the movie "Tropic Thunder." One of the reasons that it is being talked about is that the characters use the term "retard" over and over. They use it the same way that kids do all the time, to jokingly insult one another.

The people who made the movie, DreamWorks and Paramount, and many of the critics who have reviewed it, say that the term is being used by characters who are dumb and shallow themselves.

You see, we are supposed to get the joke that it is only the dumb and shallow people who use a term that means dumb and shallow. My dad tells me that this is called "irony."

So, what's the big deal?

Let me try to explain.

I am a 26-year-old man with Down Syndrome. I am very lucky. Even though I was born with this intellectual disability, I do pretty well and have a good life. I live and work in the community. I count as friends the people I went to school with and the people I meet in my job.

Every day I get closer to living a life like yours.

I am a Global Messenger for Special Olympics and make speeches to people all over the country. I once spoke to over 10,000 people at the Richmond Coliseum. I realize that I am a voice for other people with intellectual disabilities who cannot easily speak for themselves. I thank God that he gave me this chance to be someone's voice.

The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up, and when we finally say something it seems out of place.

We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, "unh huh," and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you.

That is why I love being a Global Messenger. I work for days telling my dad what I want to talk about and he tries to write it down for me. Then we do it over and over until we have something that says what I mean. We wrote this letter the same way.

So, what's wrong with "retard"? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the "in" group. We are someone that is not your kind.

I want you to know that it hurts to be left out here, alone. Nothing scares me as much as feeling all alone in a world that moves so much faster than I do.

You don't mean to make me feel that way. In fact, like I say in some of my speeches, "I have always depended on the kindness of strangers," and it works out OK most of the time. Still, it hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making "retard" jokes or references.

Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.

Last, I get the joke — the irony — that only dumb and shallow people are using a term that means dumb and shallow. The problem is, it is only funny if you think a "retard" is someone dumb and shallow. I am not those things, but every time the term is used it tells young people that it is OK to think of me that way and to keep me on the outside.

That is why using "retard" is a big deal to people like me.

John Franklin Stephens is a Special Olympics Virginia athlete and Global Messenger who lives in Fairfax, Va.

Be a fan of Dignity, Inclusion, Acceptance, and Respect. Take the R-Word pledge today at www.r-word.org

Dear Friend

We need to have a little talk Ms. Jennifer Aniston. The casual use of the word retard that you said so flippantly in a self deprecating manner on national television was more than a little disappointing. Thankfully you are being called on the (red)carpet for it and I pray that this is a learning moment for you and others in your cohort. Hey, even your buddy John Mayer was quoted during a recent concert with saying "I don't use the R-word anymore and you guys know what I mean." Please join our campaign for dignity and respect for all people. Pledge to stop using the r word today at http://www.r-word.org/

click here to see the original clip
Thank you Special Olympics, ARC and US Weekly for your response to this.

I Met My My Hero Today

1st of all, I have to acknowledge Helena's 1st birthday today. I have been working on her b-day post, but it's not ready and this just couldn't wait. I can't believe this little beauty is 1 already.

On Mother's Day, Mark surprised me with reserved seating tickets to see Special Olympics Chairman and CEO Tim Shriver give the university commencement address. After MUCH finagling and contacting the Chancellors office, the Office of the President, and the national office of SO, he had also arranged a meet and greet for our little family.

The video footage is really poor quality. The first clip in the montage is from the 10:30am ceremony with our crappy camera just as the battery died and before we could swap it for either of the 2 back up batteries. (no Vicky comments from the peanut gallery. I've changed my name. If it is good enough for Tim, it is good enough for me). Then there are just a couple of shots from when we had the privilege of hanging out with Mr. Shriver and Chris Kennedy. Then, we nabbed the last video clip of the 2pm ceremony when he spoke again from live streaming online (which has a terrible video/audio delay that I will work on later).

The story of how this came to be is just as great as the meeting itself and it deserves to be told in full. However, today is Helena's 1st birthday and she just got up from her nap. So, enjoy the very rough draft montage while I go squeeze my girl.

Photo and video editing at www.OneTrueMedia.com

Champaign County IL Spread the Word 03.03.10

Having trouble viewing the video? click HERE.

Make an on-line slide show at www.OneTrueMedia.com

More TV Coverage of Spread the Word to End the Word

Here's more coverage of our Spread the Word to End the Word campaign. CLICK HERE

Local TV Spot on Our Spread the Word to End the Word Campaign

News In Depth: Spread the Word
http://prod.illinoishomepage.net/fulltext?nxd_id=135912

Click the link to watch self advocate Cindy Combs and I speak on the morning show this morning about the Spread the Word to End the Word campaign here in Champaign County, IL!

Governor Quinn Signs Proclamation Declaring 03.03.10 Spread the Word to End the Word Day for IL

Look what arrived in the mail on Friday! It's the proclamation from Governor Quinn declaring 03.03.10 an official "Spread the Word to End the Word Day" for the State of Illinois!


WHEREAS: respectful and inclusive language is essential to the movement for the dignity and humanity of people with intellectual disabilities. However, much of society does not recognize the hurtful, dehumanizing and exclusive effects of the words "retard" and "retarded": and

WHEREAS: it is time to address the minority slur "retard(ed)" and raise the consciousness of society to its hurtful effects: and

WHEREAS: the Spread the Word to End the Word campaign is an ongoing effort by Special Olympics, Best Buddies International and their supporters to raise the consciousness of society about the dehumanizing and hurtful effects of the word "retard(ed)" and encourage people to pledge to stop using the R-word: and

WHEREAS: the campaign, created by youth with and without developmental disabilities, is intended to engage schools, organizations, and communities to rally and pledge their support at www.r-word.org with a goal of reaching 100,000 pledges: and

WHEREAS: on March 3, 2010, youth across the State of Illinois and throughout the United States will lead the second annual day of awareness to Spread the Word to End the Word: and

WHEREAS: the day will be devoted to educating and raising awareness of the positive impact individuals with intellectual and developmental disabilities have in our communities and why the use of the R-word is hurtful, even in casual conversation:

THEREFORE: I, Pat Quinn, Governor of the State of Illinois, do hereby proclaim March 3, 2010 as SPREAD THE WORD TO END THE WORD DAY in Illinois, and encourage all citizens to pledge to stop using the R-word, helping to make the world a more accepting place for all people.

Thank you Governor Quinn and staffer Ben Hamilton for making this happen for Illinois.

Later that day we sorted our 400+ t-shirts and assembled the pledge packets for our rallies in 13 schools on Wednesday.

Welcome Home

We picked Mark up from the airport and drove straight to the billboard. He had to cover his eyes first. Sophie said 'baby' over and over and Alexander thinks it's perfectly normal to have his sister on a billboard. It's so good to have Mark home. Now we just have to wait a month to learn whether or not he got the job.

And now, 2 great video clips on the R-Word