From left, Chrissy, Amelia and Joe Rivera

Late last night The Children’s Hospital of Philadelphia issued an official apology to Amelia Rivera and her family for the denial of a kidney transplant due to her being “mentally retarded.”

“As an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras’ experience. While we can unequivocally state that we do not disqualify transplant patients on the basis of intellectual ability… this event underscores the importance of our responsibility to effectively communicate with families.” - Michael Apkon, Senior Vice President and Chief Medical Officer of Children’s Hospital of Philadelphia

Thanks to everyone who worked or prayed for Amelia Rivera.  Together, we helped turn the tide toward fairness and justice.

In the days and months ahead, I hope we can continue to make our voices heard for millions of others who struggle everyday with discrimination in its many forms.

Read the full apology here.

-T

Small Victories
by Emily Jacobs

Sisters Molly and Emily Jacobs.

I’ve always had a personal issue with the word “retard.” My sister Molly lives with an intellectual disability, a condition that used to be called mental retardation. There are many online sites devoted to mocking the intellectually disabled, but one series of YouTube videos proved particularly troubling. Although I wanted to believe that hatred towards the intellectually disabled had become obsolete, these videos exposed me to a cruel reality, one that I had no choice but to combat.

“Retard Mechanic” features Donald, an intellectually disabled man who works as a janitor in an auto repair shop. Donald is videotaped by his co-workers who humiliate him daily. They attach his finger to jumper cables and have him emulate screaming noises for the camera. Worse, they pay him a dollar in quarters for his compliance; when Donald’s performance isn’t up to par, they tell him he is only “giving them ten cents worth of retard.” They force him to lift his shirt while they criticize his physique, taunt him by waving money in his face, and steal his dustpan so that he can’t work. Donald is unaware that his co-workers are victimizing him.

Something about this man’s vulnerability struck a chord in me. Watching Donald, I fast-forwarded 25 years and pictured Molly working a job where she considered her co-workers friends while they saw her as fodder for their cruel pranks. Donald’s mistreatment was an indirect affront to all people with intellectual disabilities, and so I decided to do something about it.

The videos of Donald showed little visible evidence of where he worked. I scrutinized each clue from the videos and found that I was looking for a Mazda dealership in California. Since many of the videos were shot outside I was able to spot passing trucks with the area code 415. Thanks to Google maps, I found the street address of the specific dealership, complete with the same buildings that served as the backdrop of Donald’s humiliation.

Yet I still had reservations. As a teenager, would the manager of the Mazda dealership take me seriously? Did I want the workers fired for their abuse or did I want them to be educated? I knew I couldn’t have both. Firing them wouldn’t change the world for Donald or Molly; it might make their antagonists more hateful. My hope was that these workers would start to see Donald as a human being and treat him accordingly.

It was at this point that I asked my mother to call the dealership. After watching the videos, the manager’s initial disbelief quickly dissipated and he promised to identify the perpetrators. He also promised to remove the videos from the internet and provide sensitivity training for his employees. Finally, he told my mother that Donald had recently passed away. There are two new employees with intellectual disabilities working at the dealership and the manager vowed to provide a safe working environment for them.

Though it was too late for me to make the world a better place for Donald, I take comfort that future employees will enjoy the dignity and respect to which he was never afforded.

By doing my part to increase awareness about intellectual Disabilities, I’d like to think I made a difference for the Donald’s and Molly’s of this world. And while I realize that equality is a far cry away, I hope these small victories along the way take us in the right direction.

-T

There is a lot of isolation and misunderstanding in the classroom. Bullying is a big problem in our schools, and students who have intellectual disabilities are more likely to be bullied than their ‘typically developing’ peers. Researchers confirmed that a lot of times bullying is geared towards a person’s disability.  Both Special Olympics and Best Buddies have come so far to spread the importance of acceptance and inclusion. Best Buddies is a program that fosters friendships between people who have intellectual disabilities, and their ‘typically developing’ peers around the same age, from middle school, all the way to college! Special Olympics has a great program in high schools, and now in middle schools called ‘Project Unify’, where athletes and their peers play sports together! All kids want to be accepted by their peers, especially people who have intellectual disabilities.

I struggled for peer acceptance and was verbally bullied when I was a teenager. I was often called ‘retarded’, not by the definition in the dictionary, or my medical diagnosis of Mosaic Down Syndrome, but kids were referring to me as ‘stupid’. I lost a great deal of self-confidence, and suffered for years in silence afraid to stand up for myself.  I joined Special Olympics during my junior year of high school. Competing in my favorite sports, making new friends, and just being in the overall atmosphere made me very comfortable with myself and I gradually restored my self-confidence, and found my passion, and career in Special Olympics. I wouldn’t change anything about my past. I do, however don’t want teenagers with intellectual disabilities to go through the same horrible experiences I went through at their age.  High Schools across the state of Rhode Island are participating in Project Unify sports together. They participate in Best Buddies. Athletes and their typically developing peers are eating lunch together, ‘hanging out’ together outside of school. The ‘Spread The Word To End The R-word’ campaign has made great strides in dropping the word ‘retarded’ from everyday language. Most importantly, they feel accepted, respected and included! It can only get better, and we need your support to back us up!

Another problem people with Intellectual Disabilities face is that they are un-employed, yet very capable of being employed. I never let the fact that I have a disability stop me from pursuing my dreams. When I was a child, I wanted to be a teacher when I grew up. I made that dream happen after receiving state certification for teacher assistants at Salve Regina University, and spent nine great years working as a Teacher Assistant at Meeting Street. One of the greatest benefits of working with students who have intellectual disabilities, is that on some level, I could relate to them, since I have one myself!  Besides competing in a variety of sports as an athlete, I have also volunteered for various events for Special Olympics Rhode Island over the years, and developed a dream to work for them some day. This past June, I was offered a full-time job working for them! I am very blessed that my dreams have come true, but my friends deserve to have their dreams come true too. People who have intellectual disabilities learn at a slower rate, but we are not useless. We all have our gifts and talents, and we are capable of bringing them to the workplace, if given the chance. Some work in grocery stores as baggers, and have talents they can use in different work settings. Some of my friends receive services that provide care-takers and transportation that take them to their part-time employment, and they are at risk of getting their services cut.

My younger brother Patrick who has a severe form of autism is a perfect example of a person with an intellectual disability at risk of getting his services cut. As it is, it is tough for him to stay home during a hurricane or snow storm, because he loves being busy and on the go all the time. Patrick is transitioning out of high school, attending a day program for adults who have intellectual disabilities, and eagerly anticipates going to his job placements with his direct service staff while my both my parents work full-time.  With the state of the economy, neither of my parents can afford to be unemployed, or ready to retire. Not only would his services be cut, but the hours he could be at his day placement or receive home support would also be cut. Patrick needs his services. There are many families across the state struggling with the potential budget cuts as well.  We need your support to fight these budget cuts.  My friends who are unemployed deserve to work, and not just rely on their social security checks. I am very grateful to have an apartment next door to my parents, and MANY of my athlete friends who are capable of living on their own wish to do so someday if they can afford it. Please help give them employment, and help them achieve their dreams just like I did! 

Studies show that people who have intellectual disabilities have worst health care than the rest of the population. Some don’t even have a health care plan, because they don’t even have insurance to cover a plan. Thanks to the ‘Healthy Athletes’ program, doctors and specialists take time out of their busy schedules, attend our state summer games, and do screenings with athletes between competitions. From ‘Opening Eyes’ to ‘Special Smiles’, massage therapy, (one of my personal favorites!) Fun Fitness, and Healthy Hearing, both the doctors and athletes enjoy the screenings! It is also important for us to be able to communicate with these specialists and comprehend what they are telling us. When I was younger, going to doctors appointments with my mother were very helpful, especially since she was a nurse for many years. She and the doctor would talk in ‘medical terms’ then they would translate into words I could understand. Now that I am older, wiser, and more independent, some doctors that I see naturally explain things in terms I understand, but if there are things that confuse me, I ask them to explain a little better.  I think about my friends who fall on the moderate to severe spectrums of intellectual disabilities who have a harder time comprehending things, and I think it is VERY important that doctors get to know us through these healthy athlete screenings, and build that communication together. If funding for health insurance isn’t possible, we do need funding to keep the Healthy Athletes program strong and running year-round! Special Olympics Rhode Island is partnering with Memorial Hospital to create a year-round health program that will help our athletes improve their quality of life. Especially for those who don’t have health care plans, and have used their Healthy Athlete screenings as their ‘check ups’. We need the financial support because this is very critical to the health of individuals who have intellectual disabilities!

Guest of Honour Pehin Dato Hj Haji Hazair, the Minister of Culture, Youth and Sports opened the five- a-side football tournament. The National Football association of Brunei Darussalam, as well as many of Brunei’s corporate and F&B sponsors, supported with cash donations, accommodation, transportation, plus refreshments and meals for the competition.

Eight teams, three each from Special Olympics Brunei and Special Olympics Indonesia, and two from Special Olympics Malaysia- competed for gold over four days. The teams were divisioned (a process whereby athletes in competitions are matched up according to their ability and age) into two groups and played in a round robin format. From there, the top two teams from each group qualified for the quarter finals.

Special Olympics Indonesia Berau (East Kalimantan) successfully defended their title and won the competition the second year running, beating Special Olympics Brunei-Team A 1-0. Third place went to Special Olympics Malaysia (Sabah), who beat Special Olympics Brunei-Team B 4-0. Ribbons of participation were also awarded to the unranked teams.

From left, Chrissy, Amelia and Joe Rivera

Several weeks ago, I wrote about a young girl named Amelia Rivera who was denied consideration for a kidney transplant at the Children’s Hospital of Philadelphia because she was, according to her doctors, “mentally retarded.” Now, two weeks later, I know hundreds of thousands of advocates, families and friends of people with disabilities congratulate the Riveras for their effective advocacy.  Amelia is now in the process of being considered again for a transplant.

Do we know if she will get it?  Of course we don’t.  I don’t envy at all the difficult task that medical professionals face when deciding the fate of potential transplant candidates.  I do know, however, that when Amelia comes up before the transplant committee this time around, every doctor on the committee will understand our community’s outcry about the value of every person’s life, including those with intellectual disabilities.   This is a wonderful example of how powerful change can happen when a community stands together on behalf of our most vulnerable.

Our lesson is that we cannot let Amelia’s story be an isolated call to arms. We must continue to seek change and advocate for the dignity of every human life.

I recently spoke with Amelia’s father, Joe, and I was inspired by his dedication not only to Amelia, but also to changing the hospital’s vernacular to respect the dignity of all people with intellectual disabilities.  ”I asked them to end their use of the word ‘Mental Retardation’ and we are advocating for the hospital to increase organ donations for everyone. We feel something positive has to come out of our situation and we hope that CHOP can work with us on making this happen” he told me.

We stand with you, Amelia, Joe and Chrissy, and continue to fight with you in this battle, and the next.

-T

More than 850 elegantly dressed revelers rubbed shoulders with news making politicians, film stars and celebrities as they danced to the throbbing beat of the latest hits and ‘desi’ music. The exotic décor featuring an animal theme was complemented by an abundance of colourful flowers.

“The event is a catalyst that helps raise funds from young dynamic entrepreneurs wanting to make a difference,” says Special Olympics Pakistan General Secretary Mrs. Ronak Lakhani.  She continues, “we’re very excited to have the support of some key sponsors including, Mr. Rameez Sattar, CEO Collectibles – The House of Designer Watches, who has been a supporter for eight years.”

Other event sponsors included, Etihad Airways, Lucky Cement, Arysta Lifesciences, Lakson Investments, Colgate Palmolive Pakistan Ltd., and English Biscuits Manufacturers Ltd.

“The fete lasted till the wee hours of the morning, capping our program’s amazing success in 2011,” says Lakhani.

One such example is High School sophomore Daniel Keever, who below shares insight and wisdom beyond his years. Daniel has been involved with Special Olympics for the past four years as a volunteer, unified partner and coach, and most recently became a member of the Delaware Youth Activation Committee.

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Imagine a world where people actively encouraged and included other people no matter their skin color, personal preferences, or their mental or physical abilities.

Picture a place where people were not withheld from doing an activity they loved because they were “different”.

Wouldn’t our society be a better place?

Four years ago, I began volunteering for service hours with Special Olympics as an event volunteer. Soon enough I was hooked on the atmosphere of excitement and the joy created by the athletes and events. Whether it was congratulating the swimmers when they finished, or dancing around outside at the picnic with the athletes, there was always some exciting activity full of athletes and volunteers having fun together.

It was there I noticed something.

I had always thought I was doing something extra important by taking my time to build up someone different than myself, but in reality, these people really were friends to me. Instead of it being some medal-awarding good deed, it became something I looked forward to greatly. I realized that these athletes, even with disabilities, had more in common with me than I had ever thought.

I found myself enjoying their company the more I hung out with them and I realized that they were my friends, and not just people I was making feel special. The thing I have learned the most from Special Olympics is to look past differences because the more you do, the more they disappear.

In a “what if” world, we need to be willing to take that first step to include and accept people where they are because eventually it becomes habitual.

We have created a misconception that people that are different from us must not be as good as us. Before we judge people based on our differences, we need to take time to understand what it is that makes us different. And who knows? You might not look at them as differences any more.

Some have questioned why we in Special Olympics have mounted a campaign to challenge the humiliating use of the word, “retard.” Others have sometimes suggested that Special Olympics has gone beyond its mission in mounting the world’s largest public health campaign to close the disparities and outright bigotry that still infect systems of care delivery for people with intellectual differences.  Still others wonder why so many of us speak with such passion about how sport is needed to unleash the power of the human spirit and to attack the vicious discrimination that so often crushes innocent people unjustly.

I say to all of them, open your eyes to the discrimination that goes unchecked all around us and help us stop it now!

If you are a medical professional, raise your voice for dignity now!

If you are a conservative political leader, fight for the dignity of all citizens now!

If you are a liberal political leader, fight for the dignity of all citizens now!

If you are a parent, raise your voice for the dignity of Amelia just as if she were your own now!

If you are a young person, blast the social networks with your commitment to Amelia’s dignity and justice now!

If you are a Special Olympics athlete or family member or coach or volunteer, challenge the status quo and fight for Amelia’s right to play and win the game of life now!

There can be no bystanders at moments like this.  Amelia is everyone’s child.  If she is denied care, we are all denied our humanity.

This is life and death and that’s not just rhetoric.  Please join us in stopping this tragic injustice.

As a spokesperson for Special Olympics in her role as an International Global Messenger, Martha travels the world to teach understanding and acceptance of people with intellectual disabilities, breaking down barriers and building communities of respect.  Martha has shown classmates, community members, and leaders in government, education, and business how to accept this challenge with confidence, perseverance and courage.  She has transformed relationships between athletes and their non-disabled peers, and she has been instrumental in making Sheboygan a more inclusive place.

Every day, Martha has helped Special Olympics unleash the transformative power and joy of sports to reveal the full potential of athletes who have intellectual disabilities.  It is because of her passion and determination that she was one of the first Special Olympic athletes to be inducted this past November into the Law Enforcement Torch Run for Special Olympics “Athlete Hall of Fame.”

It was only fitting that Martha joined Olympic athlete Pat Matzdorf, and Professional golfer Martha Nause in receiving this extraordinary honor.  The Special Olympics family is proud to have Martha as a member of our team.  Congratulations again Martha, on this well-deserved recognition!

-T