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The Arc Responds to Offensive Use of “R-Word” on Fox News Program

/in /by The Arc

Washington, DC – This week, on Fox News’ The Sean Hannity Show, a guest named Gavin McInnes made highly offensive comments, ridiculing civil rights leader Al Sharpton “as retarded.” Host Hannity interrupted McInnes chiming in, “you’re not allowed to say that word, it is politically incorrect,” at which point McInnes described Sharpton as, “seemingly similar to someone with Down syndrome.” To make matters worse, in a later comment posted on YouTube, McInnes attempted to explain that he didn’t intend to demean people with intellectual and developmental disabilities (IDD) stating, “I was trying to say retards aren’t qualified to have their own news show.” Referring to himself as “pro-retard,” he advised the mom of a child with Down syndrome to “get over that word soon.”

“It’s Gavin McInnes who needs to ‘get over’ outdated language that perpetuates stereotypes and fuels hatred in society. The “R-word” is being banished from our lexicon because it’s hurtful to people with disabilities and their families, so why use it?

“McInnes’ assertion that people with IDD don’t understand enough to be offended by language that is used in their presence is absolutely absurd. Clearly, he has never met or talked with the many self-advocates who have led the fight to get the “R-word” out of state and federal laws, let alone the many individuals with IDD who recount stories about how they are taunted and bullied. Language does matter.

“His assertion that people with low IQ can’t host a news show ignores their abilities. Perhaps McInnes has never heard of Jason Kingsley, Chris Burke, or more recently, Lauren Potter on the hit show, Glee. People with IDD are a part of all our communities, going to school, working alongside people without disabilities, and living life to the fullest. They are in the media, starring on hit television shows and in movies, and doing more to contribute to society than those that spread hate with their words.

“While McInnes, a self-styled provocateur, may aspire to be a regular on the Fox News network – clearly he failed the audition. Hopefully, Fox News will know better than to give him a platform to spread the ignorance and disrespect he has for millions of people with disabilities and their families,” said Peter Berns, CEO of The Arc.

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Celebrating World Down Syndrome Day and Seeking Justice for Individuals With Down Syndrome in Today’s Society

/in , /by Guest Blogger

On March 21, 2014, the world will celebrate the ninth annual World Down Syndrome Day. While people with Down syndrome have made significant strides in education, employment, and independence, there is so much more we can do as a society to ensure people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

Ethan SaylorThe wrongful death of Ethan Saylor is just one example of the work left to do. Ethan, a 26-year old Frederick man who happened to have Down syndrome, died senselessly in the hands of three off-duty Frederick County Sheriff’s deputies in a movie theater in January 2013. Ethan’s death was tragic and avoidable. NDSS has advocated, alongside the Saylor family, for Governor Martin O’Malley of Maryland to ensure that law enforcement, first responders and other public officials all receive the very best training regarding interaction with people with disabilities and for the US Department of Justice (DOJ) to conduct an independent investigation into the death of Ethan Saylor. Emma Saylor started a change.org petition, which has gained over 370,000 signatures, calling for Governor O’Malley to investigate the death of her brother Ethan. In September 2013, Governor O’Malley issued an Executive Order establishing the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. This is Maryland’s chance to lead the way for other states on these critical issues, and ensure Ethan’s legacy lives on forever.

Just a few weeks ago in Atlanta, Georgia, Judge Christopher McFadden overturned a jury’s guilty verdicts against William Jeffrey Dumas. Dumas was convicted of repeatedly raping a young woman with Down syndrome in October 2010. According to his ruling, McFadden claims that a new trial is necessary because she did not behave like a rape victim. Even as we celebrate World Down Syndrome Day, these moments of blatant discrimination deserve our attention. NDSS condemned the judge’s actions and through an op-ed response demanded that the state of Georgia Judicial Qualifications Commission begin proceedings to remove him from office. We can all get involved by supporting a change.org petition calling for McFadden’s removal; and that justice is done with the conviction being reinstated.

Last week in Plaquemine Parish, Louisiana, a mother of a baby, Lucas, who happened to have Down syndrome, was charged with his death after poisoning him—an action that deserves condemnation and for which justice must be sought.

While we can take pause today and celebrate the achievements of people with Down syndrome all around the world, we must be reminded that for us to fully achieve our mission of equality and inclusion, we must ensure that all people with Down syndrome and other disabilities are valued, respected members of their communities. The work and partnership of The Arc’s NCCJD and NDSS is vitally important to making sure people with Down syndrome and other disabilities have the right to a meaningful life in their communities, whether it’s through a career of their choosing, a living arrangement of their liking, recreational activities of their selecting, or just friendships of their electing. We, as the national advocate for people with Down syndrome, want to be sure what happen to Ethan Saylor and other tragic, unfortunate cases never happens again.

National Down Syndrome SocietyNDSS is proud to partner with The Arc’s National Center on Criminal Justice and Disability (NCCJD), a national clearinghouse on criminal justice and disability issues funded by Bureau of Justice Assistance, U.S. Department of Justice, that provides resources, information and referral, training, technical assistance and evaluation for criminal justice and disability professionals and programs. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome. Unfortunately, we learn about these tragic, unfortunate, and senseless cases involving individuals with Down syndrome every day; and we seek to advocate on the behalf of these individuals and their families as they seek justice. To that end, NDSS continues to be dedicated to issues that prevent harm, abuse, and victimization of individuals with Down syndrome.

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Our Top 10 Stories of 2013

/in /by The Arc

With 2013 quickly drawing to a close, we thought we would take a minute to reflect on some of the top stories we shared with you in the last year (in no particular order):

1) One Arizona high school’s viral video cover of Katy Perry’s song, “Roar”

This viral video featuring Megan Squire, a high school senior with Down syndrome, was a finalist in a Good Morning America contest (which challenged teens from across the country to make their own music video set to Katy Perry’s song “Roar.”) Produced by students at Verrado High School in Buckeye, AZ, the video depicts Megan’s quest to become a cheerleader. Although the video did not win, Perry loved the video so much that she invited Megan to attend the American Music Awards as her date!

2) Wegman’s employee with Asperger’s lifted by community support

In November, a customer yelled at Chris Tuttle– a Wegman’s employee who has Asperger’s syndrome– for working too slowly. Afterward his sister posted about the incident online, and it quickly went viral: As of now, the post now has over 150,000 likes, and the community has rallied to support Chris.

3) “Because Who is Perfect?”

An organization created a series of mannequins based on real people with disabilities– The beautiful process was documented in this video, and the mannequins were placed in store windows on Zurich’s main downtown street.

4) First Runner with Down Syndrome finishes NYC marathon

He crossed the finish line hours after the winners, but Jimmy Jenson still set a record at the ING New York City Marathon: He’s the first person with Down syndrome to complete the race. Jenson, who is 48 and from Los Angeles, ran all 26.2 miles with his friend Jennifer Davis at his side. The pair met 12 years ago through the program Best Buddies, a group that aims to connect people who have intellectual disabilities with people who do not. When they met, neither of them were runners. But that changed when Jenson suggested they run a 5K together. Since that first race, the pair have run a number of races together, including the Los Angeles marathon this spring.

5) One mom’s beautiful response to a shocking, hateful letter about her son

Karla Begley, is the mother of a 13-year-old boy with autism, Max, who was the subject of an anonymous hate-filled letter that made headlines around the world. The blog Love That Max posted her response.

6) Breakfast, Lunch & Hugs at Tim’s Place

“A lot of people told my parents that they were very, very sorry. I guess they didn’t know then just how totally awesome I would turn out to be.” Tim is a business owner, running the world’s friendliest restaurant, located in Albuquerque, New Mexico.

7) Fashion Photographer reframes beauty with ‘Positive Exposure’ project

Positive Exposure utilizes photography and video to transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism, to promote a more inclusive, compassionate world where differences are celebrated. “It’s about reinterpreting beauty. It’s about having an opportunity to see beyond what you’re told and what we’re forced to believe that that’s beauty.” – Photographer, Rick Guidotti, founder of the project.

8) ‘Born with Down syndrome, Newark man wins respect powerlifting’

We loved this great story about talented powerlifter Jon Stoklosa– “When asked why he likes lifting such heavy weights, Jon gets right to the point. “It’s fun,” he says, a slight smile creeping across his face.”

9) When Bill Met Shelley: No Disability Could Keep Them Apart

“You know that scene in ‘Dirty Dancing’ where Baby meets Johnny for the first time? It was kind of like that.” One couple’s love story.

10) A Life Defined Not By Disability, But Love

Bonnie Brown, who has an intellectual disability, has raised her daughter Myra as a single mom. They gave us a window into their mother-daughter relationship last February on NPR’s Morning Edition.

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Diagnosing Dementia Is Difficult in People With IDD

/in /by The Arc

Studies have shown that individuals with intellectual disabilities are living longer these days with many living well into their 50’s and 60’s and beyond. This is most likely due to new medical advances and educational programs that help empower individuals to live healthier lifestyles. While this is remarkable news, it is also directly correlated to the increased rate of dementia in individuals with IDD. While most of the general population develops Alzheimer’s after the age of 65, many individuals with IDD (especially Down syndrome) are more likely to develop Alzheimer’s earlier on in life, which is called Early-Onset Alzheimer’s. Some may even develop it as early as their forties.

Individuals with Down syndrome are at a higher risk than other individuals with disabilities for developing dementia. As we know, individuals with Down syndrome have an extra copy of the chromosome 21. This specific chromosome contains a gene that produces a protein that can cause brain cell damage. Since these individuals have an extra copy of this gene they are producing more of this harmful protein in their bodies. Studies have shown that almost all individuals with Down syndrome will develop the same changes in the brain that are associated with dementia; however not everyone will develop the symptoms of the disease.

Diagnosing dementia in an individual with IDD can also be a difficult situation because many individuals may have trouble answering the testing questions that could be used to diagnose it. There are also few other assessment tools developed for individuals with IDD. In addition, some behavioral issues that individuals with IDD can have may also be confused with signs for dementia when the issue is rooted in another problem. Starting to rule out all other possible options for the change in the individual’s behavior is a good start to determine what the real concern is.

We recently talked to The Arc’s Board President, Nancy Webster, who has had some personal connections with dementia in her family, too. Nancy’s concern is that families don’t know where to turn to get information on dementia, what signs to look for, and how to get the appropriate testing. As caregivers and family members with an individual with a disability, it is important to be aware of the individual’s whole situation to better advocate for their needs. Nancy believes “this advocacy is not solely on The Arc and its members, and on families, but also on general practitioners too – as they are the first line of people who tend to see our population”. Nancy’s hope is that through The Arc’s HealthMeet project, The Arc will become a resource for this topic to help families and caregivers find the information and supports that they need to better treat this disease, and once diagnosed learn how to cope and minimize the effects of dementia as best possible.

For more resources and webinars relating to dementia, check out the resources.

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The Arc Responds to Death of Maryland Man With Down Syndrome

/in /by The Arc

Washington, DC – The Arc is deeply saddened and shocked by the death of Robert Ethan Saylor, a young man with Down syndrome whose death last month was ruled a homicide by a Maryland court late last week. Reports state that when Saylor refused to leave a movie theater, he was pinned face-down on the ground by three off-duty Frederick County sheriff’s deputies who were working security jobs nearby. Shortly after this incident, Saylor was pronounced dead at a local hospital.

The Arc believes that all law enforcement professionals should receive crisis intervention training to help them work with individuals with disabilities who find themselves in highly charged emotional situations like Robert did. There are many ways to help a person with a disability who is upset, scared, anxious, and feeling threatened. Examples include: learning to recognize the signs that the person with the disability is becoming upset; learning how to evaluate the situation and understand what is provoking the person; learning to communicate in a non-threatening way and to talk the person down or “de-escalate” the situation, and learning how to approach a person with a disability in a way that does not further antagonize them. Finally, The Arc believes that all law enforcement personnel must learn that prone restraint, or taking a person to the ground and immobilizing them face down, is a very dangerous technique that can lead to tragic outcomes.

“Sadly, this tragedy could have been prevented. Sometimes there are circumstances that present unique challenges when it comes to dealing with individuals with intellectual and developmental disabilities, especially in high stress situations. With proper training these officers would have realized there was a better way to work with Robert, as opposed to simply using force – an extreme and unnecessary reaction. This is a moment for us not only to mourn, but we must also learn from this tragedy and encourage proper training in our police departments,” said Kate Fialkowski, Executive Director, The Arc of Maryland.

“We would like to extend our deep sympathy to Robert Saylor’s family. No one should ever die under such circumstances. This is particularly true for someone at the start of adulthood, so full of life, and with so much more time ahead of him to experience all the joys of having a full adult life,” said Joanna Pierson, Executive Director, The Arc of Frederick County.

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My Sister Was Bullied by a Radio DJ

/in /by The Arc

Update: Since this blog post was written, the DJ made an on-air apology and announced that his station will be working with local developmental disabilities organizations on an awareness campaign.

By Alex Standiford

Hello, my name is Alex, and I have an older sister, named Kellie. Kellie is 30 years old, and can easily be described as the most loving, caring, and wonderful person I have ever met. She sees the world very differently than most of us– without cynicism and with complete and utter hope. To Kellie, each and every person is good, unless proven otherwise. Anyone who visits her, no matter how frequently, is always greeted with a “Hi!,” an endless, gut wrenching hug, and a sincere declaration of love. My sister is truly a beautiful person in both body and spirit whose outlook on life I can only hope to someday attain. In many ways, I look up to her. My sister passionately loves music and dancing and growing up I remember countless times that I would open her bedroom door to find her dancing and singing at the top of her lungs in front of the mirror.

You may wonder what makes Kellie so special, what makes her story different from any other big sister you or someone you know may have? Well, Kellie happens to have Down syndrome. If you know anything about Down syndrome you know that it is something that unique people, like my sister Kellie, are born with and will live with for their entire lives. Kellie, despite some hardships and challenges she has faced, has always persevered and been positive, friendly, and happy just being who she is.

On Monday, January 21st, my sister was faced with yet another instance of feeling like she was different, or that the fact that she had Down syndrome made her somehow less than other people. On the 21st she accidentally phoned in to Mo’s Radio Show on the Q92 Radio Station based out of Alliance, Ohio, where her manner of speaking was rudely scrutinized and unapologetically berated by both Mo and countless individuals who were “tuned in” at the time. Mo opportunistically exploited my sister’s imperfect speech through his radio show and made her an object of amusement for all of his listeners– including people that knew Kellie.

“No, say it real slowly. I want to try to figure this out. It’s a little game.”

Anyone would have been embarrassed to be both accidentally aired on the radio and ridiculed for something which one has no control over. What Mo and countless listeners did not consider is what this experience felt like for Kellie. Kellie is self-conscious about her Down syndrome and has expressed her insecurity throughout her life. Sometimes, she will ask, “Why do I look different?,” and other times, “Why do I talk funny?” When it comes with dealing with tough social situations, such as speaking with an unknown person when she accidentally dials the wrong number, she will fumble over her words out of general embarrassment that all people feel in such instances. Most of the time, people will understand, at least to some small degree, and will deal with the situation with as much compassion and tact as possible.

When it comes to dealing with difficult emotional situations, Kellie processes her feelings very outwardly. Everyone has an emotional range, and Kellie has the capacity to become so hurt that she will cry for days. Being the epitome of an optimist Kellie trusts and assumes that everyone is trustworthy and kind. When someone breaks that trust, it hurts her in a way that is far deeper and more powerful than I could ever understand. I imagine it feels like the most intense betrayal or the greatest heart break I could ever experience. It is earth-shattering.

Knowing this, now considering the reality of what happened that January afternoon, try to understand the emotional pain, heartbreak, and confusion that my sister had to feel for the sake of public entertainment. Undoubtedly Mo and the radio studio will continue to hold on to the argument that “the ‘host’ wouldn’t have aired the call had he known the situation in advance,“ that Mo “would NEVER do this with any sense of malice,” but what other sense could there have been in this situation? Mo himself stated, “You don’t know who Mo is? Okay, so I can laugh at you and you won’t know who to call and say you‘re offended. (laughs) Very good.” It was quite clear that Mo knew what he was saying and doing was offensive and inappropriate, but that did not stop him.

“You don’t know who Mo is?”

“No.”

“Okay, so I can laugh at you and you won’t know who to call and say you‘re offended. (laughs) Very good.”

Whether or not the call was made from an individual with Down Syndrome, an individual with a speech impediment, or some foolish prankster looking for attention, the direction and focus of the aired conversations were centered on something that is hurtful and demeaning to numerous people. Essentially, it was entirely ignorant to air the call into live radio at all. The situation would have never escalated had the “host” simply said to Kellie, “I’m sorry, I can’t understand what you’re saying,” or “This is Q92, I think you have the wrong number.” Whether intentional or not, this experience was real and it caused a great deal of hurt to many people, not the least of all to Kellie and it should have never turned out this way.

Luckily for Kellie, she has a strong, supportive family to help her through this time. What I don’t want to see happen is Mo or another jockey like him believe it is appropriate when “somebody calls my show with a little speech impediment– I have a little fun.” The next child or adult to become the focus of this cruel bullying may not be as lucky as Kellie. It could easily be someone who is defenseless to the act, someone who has no one to stand up for them—a child aired mistakenly on the radio who becomes an object of mockery and bullying at school or an adult with a developmental disability who lives alone in a group home. It is never appropriate to make someone who is different from you a bull’s eye on the target of your “humor”. We try to teach our children tolerance and love, but then what hope can we have for them to adopt this mentality when they can hear and see the adults around them blatantly ignoring the lessons they teach.

View the complete radio transcript or view Kelie’s Story on Facebook.

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Sad Night for Glee Fans Makes The Arc Smile

/in /by Shelly DeButts

Warning: this post contains plot spoilers from last night’s episode.

Robin Trocki speaking at The Arc's 2010 National ConventionFans of the hit Fox TV show Glee were given an emotional episode last night as Jane Lynch’s character, Sue Sylvester, dealt with the shocking death of her sister Jean, played by Robin Trocki. Jane talked to EW.com about how tough it was to film the funeral scenes since she knew it meant the end of an enjoyable working relationship with Robin. Those of you who attended The Arc’s National Convention in Orlando last year may have had the opportunity to meet Robin, who has Down syndrome, along with her Glee co-star Lauren Potter as they accepted The Arc’s inaugural Image and Inclusion Award for positive and accurate portrayals of people with intellectual and developmental disabilities in the media. If you did, we’re sure you share Jane’s sentiment as it was clear that Robin was just as friendly and kind in real life as the character she portrays.

In her interview about the episode, Jane Lynch noted that people with Down syndrome can have shorter life expectancies than the average American due to health issues associated with their disability. However, with advances in medical care, some of those issues are not as life-threatening as they once were. Jane also spoke to the unique sibling relationship between the characters that many people who have a brother or sister with IDD will instantly recognize. The Arc applauds the creators and producers of Glee for creating the characters of Jean and Becky (Lauren Potter) and giving them such rich lives complete with challenges and achievements, friends and family, joy and sorrow…included, participating and contributing just like everyone else. That makes us smile.

To Jean – goodbye, we’ll miss you. And to Robin – thanks!

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Meet Adrian Forsythe

/in /by Shelly DeButts

This is the story of Adrian Forsythe, an aspiring actor, college student and confident young man. Adrian also happens to have Down syndrome, but that won’t stop him from achieving his goals thanks to assistance from The Arc, the nation’s leading and largest organization for people with intellectual and developmental disabilities. Watch Adrian navigate campus, classes and relationships just like any typical college student.