One Community

Comfort is such an abstract idea that most of us assume we have the right to feel and live in. One could say that the majority of people, especially in this country, choose the extent to which they live in comfort. The phrase “step out of your comfort zone” implies that there was some sort of comfort already in existence. So, I comfortably sailed through my high school years without having to acknowledge the group of students who seemed so incredibly different from me behind those closed doors. How was I supposed to know how to act around them? Were they fragile? Even if I wanted to offer my friendship, could they accept it? With so many unanswered questions, I just shoved the issue into the back of my mind, thinking that I’d probably never need to interact with someone with a disability because it just wasn’t my “thing”.

Hindsight is everything. Some of the most important … [read the rest here]

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Change is the demand of this generation.  Young people are all but screaming for it as they make their way down the streets of big cities with big ideas spurring them onward.  And so, a man who embodies the very essence of change, not only for our own country but also for millions of people who’ve been oppressed for years, was elected as President – Barack Obama.  He’s beginning to answer the call for a change in attitude towards war, the health care system, poverty and a wealth of other social justice issues.  But in all this unfiltered uproar to fight for betterment of this nation, sometimes the individual fades into the background.  Sometimes one person’s needs are forgotten and left behind.

In 1999, two individuals with disabilities fought for their rights in the Supreme Court case Olmstead v. L.C.  The court ruled that “unjustified institutional isolation of persons with disabilities is a form of discrimination,” when the two women filed a lawsuit for being institutionalized when doctors ruled that they would manage better in small group homes.  This past Monday marked the 10th anniversary of the case and, in order to recognize the significance of the event, President Barack Obama deemed this as the “Year of Community Living”.  The secretary of the Department of Health and Human Services, Kathleen Sebelius issued a statement regarding to the renewed commitment to enhancing the lives of people with disabilities on Monday.  One change in the statement includes issuing over 1,000 housing vouchers to  those who are transitioning from institutions to the outside world.  Also, the department is holding listening sessions for the public in order to receive feedback on changes designed to accommodate individual needs, rather than doctor-diagnosed problems.

So, what’s the difference between institutionalized living and small group homes?  Institutions are generally government run, which means that finances are based on whatever materials and accommodations are cheapest, instead of what is necessarily the best social situations.  Institutions often perpetuate the separation of people with disabilities from the rest of society because there is little to no interaction with outside organizations or people.  Small group homes can be much more beneficial by meeting individual needs with a larger staff who are able to devote more energy and time to reach resident.  Also, with a small group home, the individuals living there can learn to develop their skills and independency to the best of their ability.

Every person deserves freedom.  They deserve the freedom to have friends, to explore their neighborhoods, to make the most out of their lives.  Even if they can’t do these things on their own, they still deserve to do them.  An institution and a group home might not necessarily look all that different from the outside, but to the people living inside, the difference is between existing and living.  Change is definitely coming.  One day, people with disabilities will be treated as special, not because they require special needs or have certain problems, but they will be recognized as special because of the amazing talents, love, and skills that the world has been blinded from for so long.

Seemingly unimportant moments, those that last for only minutes or sometimes only moments, can occasionally cling to the forefront of one’s memory.  A single sentence spoken by a complete stranger may stay with you for a life time.  Bumping into someone on the way to work or watching a movie with a friend might be just as clear in your mind today as it was ten years ago.  Such a moment occurred for one man when his mother invited an African American into their home during a time when doing so wasn’t very acceptable.  She taught her children that by treating him hospitably, they would be showing the rest of their community that he belonged, despite the difference in color of his skin. The rest of the story in this man’s blog relates his experience as a child with a more current problem of injustice.  One of the reasons people with intellectual disabilities aren’t treated as if they belong is because the majority of our population does not see them being treated as if they belong.  The moment children begin school, they see their peers with disabilities being separated into different classrooms.  In high school, those students see their peers eating at a separate lunch table, going to a separate prom, and taking a separate school bus.  The average teenager will become desensitized to the word “retarded” by the time they leave middle school, especially since the term has become a normal part of the vocabulary of popular comedies like Pineapple Express and The Hangover.  This will change though.  All of this will change if leadership of people with intellectual disabilities, along with those who support them are nourished and encouraged to stand up for what they believe in.

Imagine if you grew up in a house with a neighbor who had an intellectual disability.  As a child, you wouldn’t have been affected by the media enough yet to know that being different is supposed to be scary and intimidating.  So, most likely, you would have frolicked and played with your neighbor just like he or she was any other kid.  Wouldn’t you assume that someone who grew up with such a background would be much more likely to feel comfortable around people with intellectual disabilities when he or she was older?  Of course.  The same thing is true of those who have family members with intellectual disabilities.  Why, you might ask?  They feel more comfortable because they’ve seen that those with intellectual disabilities can and do belong.

Fortunately, many of  those who’ve had the opportunity to witness the amazing gifts of those who are different from themselves often make the perfect leaders.  They are able to recognize the qualities they possess that can best help them to lead others.  But they also have the ability to recognize the potential in other people as well.  For this reason, I think that people with intellectual disabilities make amazing leaders.  I’ve never felt more loved or accepted than I have when I’ m hanging out with my friends at Misericordia.  They appreciate the life that’s been given to them and aren’t afraid to admire the life that’s been given to others.  However, leaders need someone for them to lead.  This is where it gets tricky.  There are many wonderful leaders with intellectual disabilities who serve as advocates for others like them, but what about those people outside of their community who just wont listen?  This is where individuals standing up for what they truly care about come into play.  If we treat people with disabilities as if they are leaders, as if they belong, not just in front of our Best Buddies chapter but in front of anyone and everyone, they will be recognized as such.

Last year, I went with a few of my friends from Loyola to our school’s soccer game, which is hosted right outside of Misericordia.  Many of them have no experience with people with intellectual disabilities at all, nor do they show any interest in doing so.  They view my position in Best Buddies as a service role.  But when I saw some of my friends from Misericordia watching the game as well, I excitedly ran up to them as I would have done with any friend.  My other friends hesitantly followed after me with puzzled looks on their faces.  As they listened to me gossip and chat with each of the people I ran into, they began to join in, asking questions, making comments and enjoying their opportunity to meet new people.  Only after they could observe the way I interacted with my friends with disabilities could they understand that they enjoyed companionship just like everyone else.  Moments like this one are always the most encouraging to me.  I love establishing a community between people who already know how important social inclusion is, but teaching someone who’s been left in the dark about how amazing our differences can be is undescribable.  This is one of our callings.  We have to be leaders for those who don’t yet have a voice that can be heard over all the arguing and noise of our age.  We have to be there when that noise dies down.  We have to be there to step down from our leadership and give the spot light to someone who’s deserved it their entire lives.

The world is transformed by  people who recognize the pain and imperfection sitting quietly in the deepest, most unnoticed cracks of our society.  While others may diligently work to push these undesirable aspects further beneath the surface because they are deemed as hopeless causes – too lofty to be changed by one person, there are a precious few who can see the potential beauty in everything.  These are the idealists.  Paradoxically, they are unrealistic to the core and yet, they still manage to see their dreams come true.  An example of one of these people is Eunice Kennedy Shriver.

At least in the United States, the Kennedy family name radiates change and progress.  Why is one family so successful at achieving goals, not only for themselves, but for the betterment of mankind?  Maybe they possess some rare ability to free themselves from the confined ideals of what one can and cannot do that everyone from teachers, to employers and sometimes even our parents try to place on us.  Eunice’s parents pushed her and her siblings to create endless resources for themselves.  These resources were meant to expand their children’s horizons, so that they could make their own world that they saw fit to live in.  When Eunice’s sister was lobotomized for having intellectual disabilities in 1941, Eunice used her creative determination and love for sports to develop the Special Olympics.  Her love for her sister now reaches the entire world, with 3 million athletes competing in the activities each year.  As a result, Sports Illustrated recently awarded Eunice with the Sportsman of the Year Legacy Award.

Eunice’s immense effort to improve the lives of people with disabilities naturally became a part of her children’s lives as well.  Anthony Kennedy Shriver, her son, grew up to be the founder of Best Buddies, an organization that reaches millions of people worldwide.  Fifty years ago, people with intellectual disabilities were hidden, institutionalized and even enslaved in many countries.  After one family took on their cause, doors opened for these individuals so that they would be recognized as integral parts of society.  The Kennedy Shriver family doesn’t care that people say one person can’t change the world.  This commonly held belief doesn’t stop them from actually doing it.  Would the Special Olympics ever been created if Eunice wouldn’t have fought for the cause?  Maybe.  Will people’s perspectives on those with disabilities ever change if you don’t show them how amazing and important they are?  Perhaps.  But I’m not willing to take the chance that they’ll never see, realize or hear what we’ve seen, realized and heard.

Editor’s Note: A portrait of Eunice Kennedy Shriver, founder of Special Olympics, was unveiled on May 9, 2009 at the Smithsonian National Portrait Gallery in Washington, D.C. David Lenz of Shorewood, Wis., was the artist chosen to paint Shriver. The portrait of Mrs. Shriver depicts her with several Special Olympics athletes and Best Buddies participants. It is the first portrait commissioned by the museum of an individual who has not served as a president or first lady. The portrait is on display on the museum’s second floor rotunda.

What could be better than the cool, ocean breeze whipping past your face, urging legs to pump, hands to steer and mind to focus as your bike flies down the coast of California? Add thousands of people, including a rather significant amount of celebrities, a huge party and a concert to the equation, and you’ve got the annual Best Buddies challenge. Each year, Best Buddies International hosts two bike races, one in Massachusetts and one in California, where participants raise a minimum of $1500 for the organization, bike, run or walk for 15 to 100 miles, and then celebrate the mission of Best Buddies by mingling at a once in a life time party.

Why biking? Such a physical sport might seem like an odd choice, one that could potentially be isolating towards people with certain disabilities. But I think this challenge proves to be a unifying event that naturally embodies everything Anthony K. Shriver, the founder of Best Buddies, was trying to promote when he first imagined changing the perspective of so many around him. Physical activity is difficult for everyone, whether you’ve been labeled as a person with an intellectual disability, a non-athletic person, or an Olympic medalist. No matter what the case, physical exertion requires practice, endurance and a wealth of support from trainers, friends and family. So, when all those drastically different people approach the starting point of that race, they face the same challenge: to cross the finish line. Together, as friends, they push pass all impossibilities and reach a place where they see their disabilities as a stepping stone that allowed them to rejoice over the abilities they never knew they had.

People with intellectual and physical disabilities live in a society that is not entirely accepting of them.  We are taught to cover up our own faults, but to be weary of them in others.  If someone can’t walk like the average person, or read, or be in a general classroom, they are immediately left behind, avoided and misunderstood.  But organizations, like Best Buddies, works to provide something so much more powerful than a cure designed to “fix” someone: friendship.  Each Buddy may have varying disabilities, whether they have autism and are overwhelmed with sensory overload, or Down Syndrome, where they have more physical disabilities.  The point is, everyone has a challenge they have to face.  Each friendship that is formed meets the individuals where they’re at in life, without expecting too much or too little but realizing that each person learns and develops differently.  In the same way, the Best Buddies Challenge meets each participant where he or she is at, giving the option of running/biking/walking 15, 35, 62 or 100 miles.

On May 30th, supporters of Best Buddies will start their trek through Boston.  On September 19th, the same will happen in California.  Even if you never have a chance to participate in such an encouraging, challenging opportunity to raise money for a great cause, know that everything you do in life can affect other people.  Face your challenges with a friend, and your bound to be able to run just a little bit further.

In friendship,
Amanda

I’ve always wondered why beauty is so often rewarded above all other gifts, over intelligence, compassion, humor and even athletic ability. Beauty is such a relative concept, though, and fades much more quickly than anything else that we can claim as our own. But one’s physical appearance is the first thing that hits the eyes, tricking us into believing that we know someone by looking at them. Really, this beauty is just a wrapper. Take two copies of the same book, cover one with a glossy, colorful binding and the other with a tattered, stained binding. Is one story more interesting, more unique and more satisfactory than the other? Nope. Should the author be judged on how his or her book is presented, something he or she has little control of, or on the content within that came about as a direct result of his or her ability?

On the other hand, beauty, as a remarkable, priceless gift, should not be resented either. I used to cringe a little every time a beauty pageant flicked across the television screen as I surfed through the channels. And I’m sure we’ve all been in the situation where a guttural groan of indignation travels around the room at the mention of Miss America. But not all pretty girls are Mean Girls, and to assume so is just as damaging as judging someone who isn’t conventionally beautiful. Besides, many of these women have inspired a countless number of people through their dedication to various causes, including Best Buddies. These pageants have also served as the basis of other healthy competitions between women, such as the Ms. Wheelchair pageant, which advocates the celebration of the abilities of women in wheelchairs. These women are judged on their personalities, communication skills and the ability to be a leader.

In 2008, Alana Wallace, a resident of Chicago, became Ms. Wheelchair America. When Alana was a child, she contracted polio and was bound to a wheelchair for the rest of her life. Like any other child, she continued to dream big despite the limitations of her disability. After dreaming for nearly 40 years, Alana’s self-confidence propelled her into the world of dance, where, despite all of the odds against her, she opened up Dance Detour, her own dance company. Alana’s dancing experience has given her an indescribable feeling, a feeling that even “if a small iota of this gets across to to others about people with disabilities, especially through integrated dance, where every body is different and yet moving together…again, it’s an important message. It’s a formula for what the real world should be.” A full interview with Alana can be read here.

For Alana, everything she’s received, including her disability, has been a blessing. The obstacles that we face can only help our beauty to grow as we overcome them. Dreams can’t realistically be followed. That’s why something is called a dream. It lives just beyond our grasp, so that when we reach that seemingly impossible place, the true beauty inside and outside of us overflows, and drowns out any doubts of our own abilities.

In friendship,
Amanda

So another school year, one defined and set apart by friendships formed, goals accomplished and perspectives changed, has passed. I suppose that one can never really fathom how much the passing of time can teach; however, this year in particular seemed to hold much more than I could have imagined, at least for Best Buddies. For those of you reading this who are not members, I thought that a little re-cap of the year could provide you with some insight into not only what our organization does, but also how much it has impacted Loyola and the surrounding community.

I quickly set up the Best Buddies poster board, meticulously placed flyers around the table and straightened our plaque for Outstanding Chapter as over one hundred other organizations took their places around the Gentile Center. I knew the success of the fall organization fair would set the tone for the rest of the year. With the goal of increasing our previous membership of 30 students by at least 5 new, reliable members, I began to tell anyone and everyone what Best Buddies was all about. By the end of the day, over 200 people were signed up to be on our mailing list. Within a few weeks, nearly 70 people were interviewed to be placed as a college buddy, someone who is matched up with a resident at Misericordia, or an associate member. By the end of this spring semester, our membership had increased by over 300% since the previous academic year. Talk about unexpected, right? More members, along with more contacts, means that the mission of Best Buddies is being heard. People are becoming aware of what it means to be a person with an intellectual disability. They see the challenges that are put before them and they willingly fight to break down social barriers, not because they pity those who are different, but because they have become their friends.

I saw a wide range of people, people who have family members with intellectual disabilities, people with neighbors who have autism, people who’ve volunteered with the Special Olympics and people who’ve never spoken with someone with a disability in their life, all come together at our first event to play games, to talk and to make connections. I saw 41 friendships come to life that day. Denise, one of the residents at Misericordia, received the opportunity to develop her leadership skills by becoming one of our eboard members, Buddy Director. She enthusiastically fulfilled her role with more appreciation and pride then I’ve ever seen anyone put into their work. Her natural ability to be a leader developed throughout the year, allowing her to plan a St. Patrick’s Day party for our chapter and give a speech at our last event.

As the Vice President of Membership, I had the opportunity to really get to know our members and watch their friendships with their buddies grow. I witnessed people who thought their buddies didn’t like them smile in amazement as they were greeted with an exuberant hug at a chapter event. These same members went Christmas caroling in negative degree weather. They worked together to decorate a door for Halloween so kids in our neighborhood could safely go trick-or-treating. Each of them donated their time and energy so that our chapter could raise over $400 at the Valentine’s Day bake sale. Our chapter introduced the idea of social inclusion to a 4th grade classroom in a program called One Community. We worked together to bring Maureen McCormick to our campus, giving some of the residents of Misericordia an opportunity of a lifetime to be on stage in front of hundreds of people. The year ended with a talent show, where many of the residents, along with their college buddies bravely displayed their ability to sing.

So much can change in a year. So many people can be made aware of situations surrounding us that usually go unnoticed. I’ve been incredibly blessed to see the importance of friendship firsthand. I’ve been blessed to see how much of a difference can be made when one person decides to invest in another person’s life. This year has been amazing and I can’t wait to see what next year will hold.

Sincerely,
Amanda

There are individuals in the world that do not think that people with intellectual disabilities can contribute to their community or life. Unfortunately, some of these individuals really believe and are rooted in their opinion. But then there are the others that when they are simply given the experience and offered a new perspective, they discover that people with intellectual disabilities can contribute to their community and lives in many meaningful ways. Roles such as leader, advocate, and friend are new titles that people with intellectual disabilities consequently assume.  Although these moments may not be instant, when it does happen the vision of Best Buddies comes closer to reality. In Best Buddies terms these are the “I see you” moments.

These moments are so important as they are such a big part of the essence of Best Buddies. Below is a post that I randomly came across that is truly an “I see you” moment.

I reproduced the post below for your reading. You can also check the original post here from IcelandReviewOnline.com.

I had planned to write a Daily Life column about a silly story on how I managed to get my car stuck in the middle of nowhere last weekend. But when I read Tuesday’s newspaper I saw an article that struck me and my idea for a column took an unexpected turn.

Usually I read my newspaper along with my native cynicism and morning mood swings, but despite all that a small letter from a reader on the back pages of Morgunbladid, Iceland’s largest newspaper, really got through to me.

The letter was entitled “My Opinion” and was written by a 24-year-old woman, whose name is Halldóra. Halldóra has Down syndrome.

In the beginning of her letter, Halldóra addressed the readers and told them a little bit about herself. Then she expressed her opinion on something she had heard and read about. Something that makes her both sad and angry.

Halldóra said she had heard that fetuses diagnosed with chromosome failure were often aborted. That is, fetuses that are likely to be born with Down syndrome. The topic is discussed in the media every now and then.

Halldóra does obviously not agree that chromosome failure is a reason for abortion. She feels that fetuses with Down syndrome have a right to live. That is, people like her.

Now, it is an old cliché that minority groups always have to defend their right to exist, but Halldóra’s article takes the debate to another level. In the case of Halldóra, or any other person with Down syndrome, the right to exist is not a metaphor for the existence of identity, culture, race, religion or so forth, but the actual right of being.

I find it very sad that a certain group in our society has to experience debates about their rights to be born. How can this happen in a society which values the rights of the individual, freedom of expression and most of all; the right to be who you are regardless of sex, race, religion, culture, sexuality and disabilities as stated in the constitution?

Well, people with disabilities are probably the ones who are the easiest to ignore and even repress because some disabled individuals cannot express themselves in the same way as the rest of us do, like by writing to the papers, form campaign groups, raise funding etc.

Many people who have Down syndrome cannot do those things in the same way as we do because they don’t score as high on IQ tests as the rest of us. In fact, they score far below average. However, that does not mean they are incapable of human emotions or drawing logical conclusions of what they feel, see or hear.

My feelings toward this discussion go along with Halldóra’s. First I was mad, but then just plain sad. Suddenly I began envisioning a horrid Sci-Fi dystopia. How far are we willing to go if we had the opportunity to select the people who are born in this world? 

The medical science searched desperately for the “homosexual-gene” in the seventies, but fortunately never found it, but what if they had? What if the next discovery in the field of genetics will be that they found the gene for i.e. Schizophrenia? Diabetes? Learning disabilities? Or perhaps the gene of morning mood swings and cynicism!

Where do we draw the line once we start to push it? Or will we push the line constantly until the human race is nothing else but white, Christian males, aged 18 to 55?

I believe that diversity is part of what makes us human. Let’s not choke on our own freedom and liberty and let’s grant other groups in our sweet little Western society the same rights as we have. Despite them being a little different.    Author:  Hafdís