Where Have You Been, Barbara Walters?

Barbara WaltersBy Mohan Mehra, Immediate Past President, The Arc of the United States Board of Directors, and Brian’s dad. Brian is a young man with Down syndrome.

Last week, Barbara Walters used her platform on “The View” to defend comedian Bill Maher when he used the “R” word to describe Sarah Palin’s five year old son, Trig, who has Down syndrome.  You can watch the clip on YouTube.

“I don’t think he intended to be mean spirited,” said Ms. Walters. Of course he did. Hiding behind jokes often becomes a form of bullying. We see it in schools, on the playing field, and in the media when celebrities who have a large platform like Mr. Maher are looking for a laugh or attention.

To excuse Maher due to possible “ignorance of the language” is unacceptable. He is a public figure, seeks the limelight in his public and private actions, and pleading ignorance does not fit his outspoken style. Where have you been, Bill Maher and Barbara Walters?

Historically, the “R” word was a clinical term used to describe people with an intellectual disability. Today, society uses it as an insult or to degrade people with intellectual disabilities. A recent survey of youth age 8-18 done by Special Olympics and the University of Massachusetts showed that 63% said that they felt bad for the person being picked on and only 9% of the youth said that they laughed or did not care. Where have you been, Barbara Walters?

In 2010, both houses of Congress unanimously passed, and the President signed Rosa’s Law, a bill that removes the “R” word from all federal health, education and labor policy and replaces it with “intellectual disability.” Nick, Rosa’s eleven year old brother said during the hearings, “What you call my sister is how you will treat her…. It invites taunting, stigma and bullying.” Words are mere vessels for meaning. Where have you been, Barbara Walters?

In our culture, the media enjoys a special status. With over 3 million viewers of “The View”, and a large following on social media, Ms. Walters has a large platform to inform and educate, in addition to entertain. It would indeed be fitting that in the memory of her sister, Jackie, who had an intellectual disability, she calls out such use of the “R’” word as hurtful and insulting to people with intellectual disabilities and their families.

Highlighting the Talent of Self-Advocates in Evansville, Indiana

By Denise Seibert, Director of Development
Evansville Arc

Last month, Evansville Arc was proud to partner with The Arts Council of Southwestern Indiana to host our first ever art show in The Arts Council’s Bower-Suhrheinrich Foundation Gallery located in downtown Evansville, Indiana.  The show opened on May 10 and runs through June 12.  The show features fabric mosaics that have been completed by individuals served by our chapter, along with volunteers and staff of Evansville Arc.

The project began in 2009 as a one-time project to engage community volunteers with the clients served in our Adult Day Services program.  However, the project was such a success that we have continued work on the mosaics thanks to the help of local vendors, such as fabric stores and interior design professionals, who generously donate wall paper samples, fabric samples, scrap materials and other items.

I believe our President,  Deidra R. Conner, described the project best when she said “This project truly demonstrates that the love of art is universal and that everyone – regardless of physical or cognitive abilities – has talents or gifts that should be shared with others.”

Description of pieces

Freedom of Religion“Freedom of Religion.”

This mosaic represents the right for all people to practice their religion or beliefs. Seclusion of individuals with disabilities in the past and societal attitudes impeded their ability to express and practice their religion or beliefs. Many individuals with intellectual and/or developmental disabilities indicate that being able to participate in worship services of their choosing greatly enhances their lives.

Beverly attended church with her sister before her sister passed away. With supports, Beverly is now able to attend religious services. ““I’m happy to go to church.  I haven’t been since my sister died.  I really miss the music & want to sing.” – Beverly W.


Freedom of Expression“Freedom of Expression.”

This mosaic represents the right to speak openly and fully without fear of undue criticism or punishment. Too often, persons with disabilities have not been given the opportunity to speak for themselves. Due to social and cultural attitudes, their opinions were not always given the same value as those without disabilities and their efforts to speak up were stifled. Individuals with disabilities have much to say and are encouraged to speak up about issues that impact their lives and their community.

“I am able to speak my mind and follow what’s in my heart”- Matt B


Right to Access“Right to Access”

This mosaic represents the right of freedom of movement in the community. Freedom of movement is two-fold: being allowed to be a part of one’s community and being able to access it. In the past, persons with intellectual and/or developmental disabilities were encouraged to be placed in institutions and hidden from the rest of society. They were not able to attend public schools and take part in the daily activities such as employment, shopping, using recreational facilities, etc.  Prior to the Americans with Disabilities Act (ADA) even if they were allowed to participate, many individuals with disabilities were limited due to physical or other barriers. Today we are seeing more and more individuals with disabilities contributing to their communities as employees, volunteers and taxpayers as they are given opportunities and reasonable accommodations.

“The best thing about getting my job is that I’m earning my own money and I now have responsibilities. Having responsibilities is the important thing, like showing up for work and being on time.” – Nathan B.

Raising Awareness of Williams Syndrome

by Mike McFall, Williams Syndrome Association

In 2010, the Williams Syndrome Association designated the 1st full week in May as “Williams Syndrome Awareness Week.”  In the years since, the number of awareness events for Williams syndrome held annually has grown tremendously, and this year, Congressman Jim Moran (D-VA) will introduce a resolution in Congress (H-Res 194) in recognition of the entire month of May as Williams syndrome Awareness month.  What do you know about Williams syndrome?

Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical and cognitive problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.

But there are major struggles as well.  Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care, and early interventions (such as speech, physical and occupational therapy) that may not be covered by insurance or state funding.  As they grow, they struggle with things like spatial relations, numbers, and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential.  Many adults with WS contribute to their communities as volunteers or paid employees working at senior homes and libraries or as store greeters or veterinary aides, but few are able to work a “full-time” job, or earn a large enough salary to be self-sustaining.

Opportunities for social interaction are vitally important as well. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression and increased anxiety.  Individuals are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often do not process nuanced social cues and this makes it difficult to form lasting relationships.

Common features of Williams syndrome include:

  • Cardiovascular Disorders
  • Kidney & Gastro-intestinal Disorders
  • Similar Facial Features
  • Developmental Delays
  • Learning Disabilities
  • Hypercalcemia (elevated blood calcium levels)
  • Anxiety
  • Low birth-weight / slow weight gain
  • Feeding problems
  • Dental abnormalities
  • Hernias
  • Hyperacusis (sensitive hearing)
  • Musculoskeletal problems

This May, thousands of children and adults are expected to join the Williams Syndrome Association (WSA) to raise awareness for Williams syndrome (WS) by holding events including nearly 50 walks in cities across the U.S. including New York, St. Louis, Detroit, San Diego and Houston. Get a complete list of events and find out more about the efforts to raise awareness at walk4williams.org. And, you can find out more about Williams syndrome at williams-syndrome.org.

My Definition of Autism

Andrew ReinhardtApril is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism?” Andrew Reinhardt is working on a Master’s degree in physical science and has a diagnosis of Asperger’s syndrome. Below is his personal definition of autism. Follow the conversation this month online using #autismaware

By Andrew Reinhardt, Guest Blogger

Being on the autism spectrum to me was at one point in time a defining characteristic of who I am.  It is not anymore.  I’ve largely grown out of needing to define myself in such terms.  I am a very active individual, albeit not as active socially as I would like to be, but in terms of academics, work and family, I am very happy with my life and define who I am based on these parameters, and others.  This has some advantages, since I’ve seen time and again that having a disability, any disability, is not typically smiled upon in the hiring process or beyond in this country.  I’ve done best and even have tended to be hired more often when I learned to shut up and only open my mouth about having Asperger’s when it’s absolutely necessary.  Since I can pass for an individual who is not on the spectrum, at least at this point in my life, I find that it is better to not bring up such issues at all and play the part of so-called normalcy.

But still, Asperger’s still affects me in highly negative ways, though it affected me in worse ways historically.  I specifically avoid shopping at malls, or anywhere for that matter unless its grocery shopping.  I prefer to avoid eating out to ordering out.  These are habits born out of a general social anxiety, as well as several issues such as what to do with eye contact in crowds, the noise levels, the lighting, so on and so forth.  As bad as it is now, it was worse to the point of breaking out in hives during a full blown panic attack before.

This is progress, even if it doesn’t seem like it at times.  Historically, I’ve faced several problems worse than this, such as a severe fear of, and sensory problems with, insects, that caused me to run away from them to the point of running in front of cars at times.  I also was self-injurious at times when I thought I did something particularly bad, though in hindsight I’m not sure I’ve ever done anything particularly bad in my life.  All that said, though being on the spectrum has been a great bane to me throughout the years, it also has provided some good things to my life, for instance my mathematical skills, my analytical skills, and the drive to be more than I am today, the last of which is probably the most important because I’ve met individuals who have the skill, but lack the drive to do anything with it.  I contend that because of my life on the spectrum, particularly the hardships it’s caused, I’ve done better as an adult than I otherwise would have.

Running With A Purpose

Jonathan Brunot

Photo courtesy of Verlaine Brunot

This is a guest blog post from Verlaine Brunot, whose brother Jonathan will be completing the Boston Marathon this Monday in honor of Autism Awareness Month. It will be his 9th Marathon overall and his 5th time completing the Boston Marathon.

By Verlaine Brunot, Guest Blogger

My name is Verlaine Brunot and I would like to share with you all a story about the power of perseverance, dedication and willpower.  This is a story about my youngest brother Jonathan.  Jonathan is severely autistic.

Jonathan Brunot was born on March 14, 1989; a healthy child with an expressive personality.  He had lots of eye contact, and his vocabulary built steadily as he began to learn to speak.  However, when he was about 2 ½ years of age, he began to regress dramatically.  His eye contact became non-existent and the few words and even phrases he had mastered in the previous months slipped away into completely non-verbal interaction.  Jonathan would later be diagnosed as severely autistic, a prognosis that meant he could never develop “typical” brain function for his age.

Just. Like. That.

Autism is a lifelong, pervasive disorder.   However, no matter how difficult the circumstances; an autistic person is only limited by the limits we put upon them.

Case in point, our amazing mother. She always taught us that Jonathan wasn’t merely an “autistic” individual, but rather we were an “autistic” family.  It was incumbent upon us as a family to do whatever we could to help Jonathan navigate through this difficult world.

That is why throughout Jonathan’s adolescence; my mother contacted many different special needs programs to enroll Jonathan in as many extracurricular activities as possible.  Since Jonathan wasn’t capable of telling us what new things he wanted to try, we effectively had to “throw him in the deep end” so to speak and immerse him in EVERYTHING.

We signed him up for a bowling league, took him to horseback riding, as well as registered him for a special needs basketball league.  These activities gave Jonathan an outlet in order to expend all his energy as well as to help him assimilate “normal” activities like his older siblings.  Jonathan was not always enthusiastic or attentive during some of these activities; however our mother was still determined to at least give him as much exposure as possible to these different environments.  It was precisely this determination and persistence that prompted my mother to have Jonathan join a special needs running club called ROLLING THUNDER.  The selfless volunteer coaches at Rolling Thunder specialized in assisted running with the mentally disabled and they welcomed Jonathan with open arms.

When Jonathan first joined the running club, he struggled tremendously.  For the first couple of weeks, Jon could not run more then 10-15 yard without stopping, or getting distracted or wanting to lie down.  In fact, Olga began running side by side with Jonathan, at times gripping his belt and effectively pulling him along the trails.  Even after 2 months of practices, Jonathan was still not really grasping the concept of running.  Olga was nearly ready to have him quit, both as a result of her fatigue from constantly pulling him and Jonathan’s inability to connect with the sport.  The leader of Rolling Thunder, Steve Cuomo, encouraged Olga to not give up on Jonathan and worked with her to help Jonathan continue running.  That led to the fateful day when Mr. Cuomo introduced Olga to a running coach named Vincent Delcid.

Over the upcoming months, Vincent was able to teach Jonathan to pace himself, and stretch, as well as how to approach hills and to sprint at the finish line.  Over time, Jonathan developed a great “coach – athlete” relationship with Vincent during their runs and really began to embrace the sport.

After several months of running, coach Vincent  REALLY upped the ante.  He could see that Jonathan was really enjoying their runs and was getting faster and faster by the day.  Coach Vincent told us that he wanted Jonathan to run the NYC Marathon. Yes, THE NYC MARATHON.  26.2 long, difficult miles across all the boroughs of Manhattan!

To me, this seemed initially like an OUTRAGEOUS,  INSANE, EXTRAORDINARY goal to set for Jonathan; but at the very same time there was no way we could doubt the determination of coach Vincent.  Between Coach Vincent and Olga, Jonathan had a support system that could NEVER fail.

On November 2, 2008 Jonathan completed his first marathon in 4 hours and 48 grueling minutes (ING NYC Marathon 2008) and he has hit the ground running ever since!

My youngest brother Jonathan has evolved into a gifted runner and a tremendous athlete. He’s an amazingly inspiring marathon runner who shows me strength and courage everyday… and oh yea, he happens to be autistic.

The proudest older brother in the whole world,

Verlaine Brunot

You can track Jonathan’s progress via the Athlete Alert text system.
Text RUNNER to 345678
Wait for a confirmation text message.
Reply to the confirmation text message with Jon’s bib number 20973
You will be signed up.

My Brother, My Role Model

Jui and brother ChinmayBy Jui Agrawal, Guest Blogger

I am the lucky younger sister of Chinmay Khaladkar. When I think about him, I smile because of all the happy memories that he brings to mind. Whether it is his love for music, cars, travel or eggplant parmesan, he enriches my life beyond words. Having been born with Cerebral Palsy, and the complications that have accompanied his condition, he has unyielding optimism that makes me proud to be his sister.

My family has been lucky enough to travel extensively, expand our worldview and experience the cultures of many countries. However, the one journey that helped me grow the most has been at home, as I’ve watched my role model, my brother, grow and become the most loving and happiest of people.

Through Chinmay’s eyes you see a world where everyone is good and intentions are always pure. He has a way of talking to strangers, laughing at your most lame joke, and making long-lasting friendships. His celebrations always bring together his biggest fans, whether it’s his therapist of 30 years, friends from kindergarten, or family from across the country- a reminder of all the people he has touched with his love.

Over the years, as our family has celebrated Diwali, the Hindu new year, there is a ceremony when the brother gives the sister a gift as a token of appreciation. Chinmay, not having the ability to drive on his own and get me a present, has repeatedly put his paycheck in an envelope addressed to me in his scrawling letters- flooring me his gesture, and showing me the true meaning of selflessness.

Starting at a young age Chinmay has always been the one looking out for me.  Whether it was holding my scared small hand as we went into the darkened basement for a game of hide and seek, or coming to my defense when my parents were angry at me for missing curfew, he has always consoled and protected me, being a true protective older brother.

Jui Agrawal 2Despite our connection, we’ve shared the same problems that all siblings face- the squabbles, the jealousies and the competitions. Chinmay will never graduate from college or drive a car, and as I’ve hit these milestones throughout the years, he has had a hard time dealing with my moving on from our days of playing pretend. Though I have spread my proverbial wings, he feels as though I have left him behind in my journey- Chinmay, an eternal child at heart, will never fully understand that it is because of his love and support that I have learned to fly. For both of us.

As we journey through adulthood, I have become increasingly inspired by Chinmay and realized that I want to dedicate my career to the advocacy of people with intellectual and developmental disabilities. I know that without him, I would not see this extraordinary community as having the humility, grace, and determination that they embody.

Jui Agrawal is pursuing a Master in Public Policy degree at the Bloustein School for Planning and Public Policy at Rutgers University. She currently works at the John J. Heldrich Center for Workforce Development on campus assisting with research related to disability employment. Jui has spent time working in Washington, DC, both at the Pew Charitable Trusts and a boutique government relations firm focusing on environmental, tax, and health policy issues. Most recently, she has interned with The Arc of California and United Cerebral Policy, and will be joining The Arc’s national office in Washington, D.C. as the summer 2013 Paul Marchand intern.

Autism Is “The Matrix”

Wendy KatzApril is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism.” Wendy Katz identifies as being on the autism spectrum. She is living in Louisville, KY, and pursuing a career in the human services field. Below is her personal definition of autism. Follow the conversation this month online using #autismaware

By Wendy Katz

How do I define autism? It is simple but the total truth: Autism is “The Matrix.” Seriously, it sounds cheesy, but I feel that one reason that I truly related to this classic film is for this reason. What is “The Matrix?” It is everywhere and colors everything, it is the world pulled over people’s eyes to blind them from the truth.

Granted in the case of autism, “The Matrix” is a metaphor: my autism is not a veil blinding me from the truth, but it is a tangible reality, which is everywhere in my world, ever so subtly coloring and altering the contours of my reality and woven into my very fabric in such a way that I am not aware of it and cannot see it. And though I am not blinded from the truth, sometimes my altered awareness does blind me to certain realities tangible to others, whose sight is clear.

Sometimes I am not aware, for example, of subtle politics and actions, which might limit my professional advancement. Other times I might miss the flirtations of a “friend” or the tension in some of my relationships. Some other times I simply cannot see the forest for the trees: I may be so blinded or distracted by a truly “loud” sound or smell that I cannot focus on the true interpersonal undercurrents of a situation. To stretch this metaphor, I may not be “blinded” to the truth, but at times I am “visually impaired”.

When people ask me about the differences between say a psychological issue such as depression or OCD and my developmental disability, the answer comes quickly and easily. There is no slightly off neurotransmitter in my brain that can be slightly tweaked to change my experiences. My very BRAIN is a different shape, and as Morpheus says in “The Matrix”, “The body cannot exist without the mind.” Autism isn’t a social impairment or a need for behavior modification: it is an entire reality, which for better or for worse I inhabit.

One way in which my reality departs from “The Matrix” metaphor, is that on rare occasions, it seems to truly be “for the better”. Sometimes I have a way of looking at the world or solving a problem that is so far outside of the box that it is a true gift. Other times, I find myself seeing straight through a truly smooth manipulator because I am immune to his or her charms. Autism isn’t always a curse but isn’t necessarily a blessing either; it is simply the world in which I live.

So which character would I be in the movie, extending the metaphor for “The Matrix”? I tend to pass well enough in everyday life that some think I was misdiagnosed or “beat” my autism or have such a mild case it “doesn’t count”. But the world I live in, the things I see, hear, feel, smell, touch, taste, and EXPERIENCE are still colored by autism. I have one foot in the “real world”, but I am no Neo; I am still bound by the rules of “The Matrix.”

I tended to identify with Trinity: a ballsy girl with a foot in both worlds, unable to shake “The Matrix,” yet at times able to see through it. I find that when I truly focus, though I still see the world through my own eyes, I can almost extrapolate to figure out the world as a neurotypical person sees it. At times, I feel like a lingual translator of sorts, and I find myself able to translate and explain things to people on both sides of “The Matrix.” I consider this both my “savant skill” when people ask and an invaluable gift.

I remember when the movie first came out, people asked me if I would have taken the red pill out of “The Matrix,” rather than the blue one which ended the “trip down the rabbit hole”. I told them that I would not only grab and dry swallow the red pill, but I wouldn’t bat an eye to see Morpheus and would have cried out in relief, “Oh that explains EVERYTHING!”

All joking aside, autism colors everything I do and all of my many accomplishments, failures, worries, hopes, and dreams. When people ask me who I would be if I wasn’t on the spectrum, I find myself unable to even answer the question. I have accepted that I will never know.

My Definition of Autism

Amy GoodmanApril is Autism Awareness Month and The Arc and Autism NOW are taking this opportunity to ask individuals who identify as being on the autism spectrum to answer this question: “What is your definition of autism?” Amy Goodman is co-director of Autism NOW and an individual on the spectrum. Below is her personal definition of autism. Follow the conversation this month online using #autismaware.

By Amy Goodman

Being an individual on the autism spectrum means that I have a diagnosis of autism.  So what. It doesn’t matter in the long run because it does not define who I am or what I can or cannot do.  First and foremost, I am Amy, an individual who happens to have a diagnosis of autism. I don’t let it get in my way of anything. It does not present any challenges for me and if it does, I work to overcome those challenges by finding a way to jump through the hurdle and succeed at everything I do or try.

For me, it has been a positive experience finding out that I was on the spectrum. I have embraced it and used it to my advantage. It opened a lot of doors that otherwise would have stayed closed. I was able to move forward with my life when I found out. I went to Graduate school and chose the path that was best for me. It helped me to focus on what I wanted to do with my life.

Knowing I was on the spectrum, and knowing that I could be a success has helped me to jump the biggest hurdle of all, obtaining and keeping a job in the autism field. The opportunities have been endless and by embracing my autism, I have grown as an adult. I finally found what I had been looking for more than 30 years – an answer to what direction I should go, and where I fit in in this world.

Explaining to someone not on the spectrum is very difficult. They just don’t seem to understand why I do what I do. They are always being pessimistic and saying that there is nothing wrong with me, which in this case is true. There is nothing wrong with me. It’s the attitude of others that only see the glass as half empty and that I’m not capable of doing anything at all. That is something that needs to be fixed. Me? I’m the optimist. Don’t fix what isn’t broken. Fine tune it. If someone is on the spectrum, utilize their abilities and accommodate their needs, don’t question them. Work with them to maximize their brain capacity. See the situation through their eyes. Give them a chance to excel and most of all treat them with respect and dignity.

We may not be the most social of beings, but we certainly can learn and grow from our mistakes. Just remember there is more than one way to skin a cat, so explaining what it’s like living with autism is different for everyone on the spectrum. I don’t need to explain anything because I’m perfect the way I am. If I don’t like something I avoid it. If it hurts my ears, I wear earplugs or noise canceling headphones. There is a solution for every problem, one just has to do what is best for them and not worry about what others think.

Autism is part of me, so it should not define me or need explaining at all. Not everyone can pass as “normal” or “neurotypical” but who wants to be like them anyway?  I am who I am and there is no changing me. Accept me for who I am and you will see autism in a whole new light.

“Just Be”: Dancing Knows No Disability

Shannon and Tim QuinnBy Shannon Quinn, Guest Blogger

Shannon Quinn is a dancer and teacher at Dance Place, a nonprofit arts campus in Washington, D.C. In April, her company, ReVision dance company will perform “Just Be” in honor of her father; the late Timothy J. Quinn.  The April 27 performance includes a VIP reception with proceeds benefiting The Arc. Tim Quinn was Executive Director of The Arc of the Northern Chesapeake Region from 1990 to 2010. Tim was a visionary leader and advocate for people with disabilities, respected nationwide for his efforts. During his time with The Arc, his chapter was recognized for the quality of its services and commitment to personal empowerment and inclusion. And, Tim personally received the National Conference of Executives of The Arc 2009 Executive Excellence Award.

Growing up with my father, Tim Quinn, I was inspired from an early age to work with individuals with intellectual and developmental disabilities. I would travel every summer with my dad to The Arc conventions, and tag along when I could in his office at The Arc Northern Chesapeake Region. I was inspired by his kind heart and genuine interest in every person he came into contact with.

Teaching has always been a passion of mine, and since my father’s passing, I became more involved in teaching dance to children and adults with I/DD. I walk away from each class uplifted and focused on how individuals no matter what their abilities are, can be impacted by dance.

As my work with individuals with I/DD increased over the past two years, I had some serious thoughts about inclusion and how the word inclusion shouldn’t really even exist. Every human being has the right to live a fulfilled engaging life, no matter what their ability, and that should be a given.  As an artist, I began to form these thoughts into movements and from there, the piece “Just Be” was born.

In the work, I explore subjects like support and “people first language.” What does it mean to support individuals with I/DD and then in return, how does that support translate into those individuals supporting themselves? The piece also focuses on people first, rather than labeling by an individual’s disability. I want my message to be positive and uplifting to every individual. Dance is universal and has no limits. This project has reinforced my belief the dance can bring people together, no matter their age, background, ability, experience, profession or skill level.

On Saturday, April 27, the ReVision dance company will perform “Just Be” and host a VIP reception organized in partnership with The Arc of the United States with a portion of the proceeds benefiting The Arc. The performance features children with disabilities from the Mamie D. Lee School who were taught by instructors from ReVision dance company. Also, the performance includes students from The Arc of the Northern Chesapeake Region shown on film. I hope you’ll be able to join us at Dance Place and help celebrate my father’s legacy to celebrate and love ALL people. Find out more about our dance company and this performance at www.danceplace.org.

‘I wanted to make a difference in the community’

William MonaghanBy William Monaghan, Guest Blogger

In celebration of Developmental Disabilities Awareness Month, The Arc is encouraging individuals with intellectual and developmental disabilities (I/DD) to “Empower Yourself, Empower Someone Else.”  Today, The Arc offers you an article from William Monaghan, the President of the Delaware chapter of People First and an individual with I/DD. Read on to find out more about William’s life and the steps he has taken to be his own best advocate.

This column first appeared in the Spring 2013 issue of Apostrophe Magazine to which Mr. Monaghan is a contributor. Apostrophe Magazine is a publication created for, about and by people with intellectual and developmental disabilities. You can subscribe to Apostrophe Magazine to read more interesting perspectives from people with I/DD as well as columns from The Arc’s national office covering a variety of issues.  And you can find out more information about how The Arc helps support people with I/DD who are interested in self-advocacy on our website.

I am the president of Delaware People First in Wilmington. I was born in Wilmington and have lived here most of my adult life. A good thing about Delaware is that it’s near big cities like Philadelphia, New York, Washington, D.C. and Baltimore.

My mother and father were wonderful role models and gave me the opportunity to expand my horizons by sending me to the Riverview School in Cape Cod, Mass., where I was taught many skills that I feel helped me in my success in my adult years. I graduated from Riverview in 1974 and then attended Brandywine High School and McKean High School in Wilmington.

My mother and father were instrumental in helping me to achieve my goals. My mother’s name is T.J., and my father’s name was William Monaghan Sr. My father is deceased. I also have a sister, Andrea, and they all live in South Carolina. My wife, Barb, and I visit them when we have vacation and on holidays, and we also talk to them on the telephone.

I work for the Dupont Co. in Wilmington and have been employed there for 35 years, which I am extremely proud of. The job has taught me many things, including how to communicate with people and how to manage my time. I work in the clerical/printing department, and I really love my job. I do a lot of different things in my job, which keeps it interesting and challenging.

I joined Delaware People First in 2003, and from the very beginning, I wanted to become an officer. I felt like I could do a good job being a leader and guiding the group. I also wanted to make a difference in the community and was interested in self-advocacy and self-determination. There are 40-50 members in Delaware People First, and we also have a group in downstate Delaware with about 10 members. We meet once a month and have discussions about issues that affect the group, and we bring in guest speakers to talk about issues such as employment, transportation, self advocacy, emergency preparedness (Gary Mears from the University of Delaware has been working with us) and many other topics. We also have gone on many trips to New York, Washington, D.C. and Baltimore, and trips to the Delaware beaches. Delaware People First has allowed me to make new friendships, to help other people with disabilities speak up for themselves and to become stronger advocates. It has also helped me with public speaking where I feel comfortable talking in front of groups and other people. Delaware People First treats people like adults as we should be treated. That is my favorite thing about the group.

The advisers for Delaware People First are Debbie A. Nock, who has been an adviser for 16 years (an “old-timer” in her words) and Susannah Eaton Ryan, who has been an adviser for seven months. The important issues we are working on now include emergency preparedness, self-advocacy and self-determination. We are also planning a statewide advocacy conference in March 2013. We are working with many other groups in Delaware to prepare for the conference and hope to have more than 100 people participate. Delaware People First has many fund-raisers each year. We raise money by having fashion shows, hotdog and bake sales, car washes, selling tickets for Friends Helping Friends Day at Boscov Department Store, gift wrapping at Christmas for family and friends and participating in restaurant fund-raisers such as Friendly’s, Chick fil-A and many others.

My favorite things to do are going out with friends, going out to dinner, taking trips, bowling, playing golf, Special Olympics and spending time with my beautiful wife, Barb. My favorite TV show is “Two and a Half Men,” and my favorite food is Salisbury steak and mashed potatoes (I also have a few others of course).

My best qualities are being outgoing, friendly, courteous, trustworthy, loyal, cheerful and dedicated to people and causes. As other people have stated, I am a Boy Scout.