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.

Meet The Arc Audi Racing Team

By Heidi Reinberg

When I first read about The Arc Audi Racing Program, it seemed like a perfect, organic melding of individual moxie, nonprofit derring-do, and corporate social initiative.  Here was a race-car driver – Don Istook – who was inspired to share his love of racing with those with I/DD, and The Arc and Audi came along for the ride.

And what a ride it was!  The roar of the engines, the thrum of activity in the pit and on the sidelines, the colorful blur of the cars as they sped past at lightning speed– the excitement of my first day at the races was equally matched by the sheer exuberance of our Arc Audi crew.

Though I’m currently making documentaries, I’ve been involved in nonprofit and volunteering my entire life – since I was 13, I’ve believed that, whether it’s over a day or over the course of several years, each of us has the capacity to make a difference in someone else’s life.   That belief has been borne out time and time again in my work with such terrific organizations as City Cares of America, The Fresh Air Fund, The Bronx Documentary Center, and, now, with The Arc and The Arc Audi Racing Program.

A very special thanks to Trudy Jacobson and Kristen McKiernan from The Arc’s national headquarters and to Marti Sullivan, Meredith Manning, and Pat Napoliello of The Arc San Francisco for their assistance in making this film happen.

Heidi Reinberg

Heidi Reinberg

About Heidi Reinberg:
A lifelong organizational wonk, Heidi Reinberg has consulted for a wide variety of charitable organizations, advising on topics ranging from nonprofit startup to board development and fundraising to volunteer management and corporate partnerships. Her work covers a broad swath of issues: animal welfare, foster care, reproductive rights, public health, human rights, and developmental disabilities.

In the late ‘90s Heidi decided to put her skills to creative use and began producing social-issue films for HBO, PBS, and LOGO, among others. At present, Heidi is partnering with Oscar winner Ross Kauffman (Born Into Brothels) as Executive Producers of a series about conflict photographers; the project is currently in development as a fictional series at NBCUniversal. She recently founded Heidi Reinberg Big Idea, LLC to support visionary social entrepreneurs by providing project management services.

Meet Teddy: Self-Advocate, Entrepreneur and Inspiration

By: Annette Downey, Director of Community Living Services of Oakland County in Ferndale, Michigan

Teddy Fitzmaurice is a 28 year old energetic entrepreneur with Down Syndrome who promotes human rights and disability advocacy.  Teddy lives in his own apartment and loves to play his music loud and watch TV whenever he wants. He enjoys taking care of his bunnies, Chloe and Amy, walking, running, biking, swimming, and hanging out with his many friends.

Teddy began his own business, Teddy’s Ts, in 2006. He sells T-shirts that come in many sizes, along with a multitude of buttons. Teddy has taken his business around the country including Washington DC, Chicago, New York, San Juan, St. Louis, and Columbus just to name a few of his stops. He also displays his shirts in several stores.

The logos displayed on Teddy’s t-shirts and buttons promote improved quality of life, social justice, and equality for all. Teddy promotes community living, self-determination, inclusive education, and people first language. His merchandise proudly displays messages such as “Label Jars, NOT People”, “Shred the word – R E T A R D E D” and “Disabled, Sexy, and Proud!”.  Teddy uses a variety of creative methods to share his vision and passion for advocacy.

Always the happy salesman, Teddy is eager to attend every conference he can to sell his shirts.  Teddy’s products are creative and inspirational, and they promote disability rights and social justice.  To check out his product line, please visit Teddy’s T’s website www.teddysts.com or register for The Arc’s 2012 National Convention & International Forum and purchase one of his t-shirts in Entrepreneur Alley!

Wings for Autism Workshop: A Parent’s View

By Tonia Ferguson, Director, National Initiatives at The Arc

Plane in Sky

Last month, I had the pleasure of attending Wings for Autism Workshop at Logan International Airport in Boston, MA.  As a parent of a child with autism I didn’t know what to expect, but was excited to participate. I can’t even begin to describe what a wonderful program this is and how much of a difference it can make to children on the spectrum and their families.

I’ve never travelled with my son, Jared because I have always had concerns about how he would deal with security and the excess of people and noise that fill airports on a daily basis.  Observing the way that Wings for Autism addressed the concerns I had, and went into further detail to prepare individuals for all the aspects of travel truly impressed me.

The daylong event gave parents and children a “test run”, where they went through every step of traveling on a major airline. With volunteers from JetBlue including flight attendants and pilots, officials from the Transportation Security Administration (TSA), ticket counter agents, and collaboration with other airlines and their staffs the simulation truly prepares parents and children for what to expect when traveling. The simulation requires families to clear security, board the plane, fasten their seatbelts, and prepare for take-off.  A highlight for the kids was a tour of the cockpit given by a pilot.

For children that are having issues with the various parts of the simulation there are behavioral specialists on hand to help parents and children work through any problems they may be having.

While this event is intended to benefit the families participating, I was impressed to see the volunteers from TSA and JetBlue benefiting from the experience as well.

The Arc’s national office plans to work with The Charles River Center (a chapter of The Arc) to expand Wings for Autism. If you are interested in the program and want to find out how to bring a workshop an airport near you please do not hesitate to email me.

This experience opens up a world of possibilities for my family and other families with children on the spectrum, the sky’s the limit. I look forward to working with Wings for Autism as they expand this innovative program and I hope to take Jared to a simulation at our local airport in the near future.

To view a video about the event visit The Charles River Center’s website.

Celebrating National Sibling Day with My Brother

By Kim Keprios, member of The Arc’s National Sibling Council and the Sibling Leadership Network

Kim Keprios and Family

Kim Keprios and her family share a day out on the water.

My brother Mike, “Kep” as I affectionately call him, is a man of tradition. As a family we are bound together by Kep’s desire to celebrate every Hallmark Greeting Card holiday ever invented. Add the National Sibling Day to our list of gatherings on the calendar that we will joyfully honor as a family this spring! National Sibling Day celebrates the unique bond between people with intellectual and developmental disabilities and their brothers and sisters.

The Anchor

Mike has always brought our family together. He keeps us laughing, grounded, grateful and humble. Although he has a significant disability, Kep has been the anchor in our family. On rare occasions I have felt like he is a weight that ties me down when I yearn for the freedom to “leave home,” but mostly he is an anchor in the best sense of the word.

Kep led me to a career path I may otherwise never have pursued, or been afforded the opportunities I have had through my 30 years with The Arc Greater Twin Cities. At the core he is behind the passion and sense of urgency I bring to my work in advocacy with people with intellectual and developmental disabilities and their families.

Mike’s Little Sister

Now my beloved brother and I are on the official AARP membership rolls. Together we are experiencing the painful realities of getting older. Our dad died last September. The hole in my heart is huge, but it is magnified as I watch Kep struggle with the loss of “Daddy George.” At times he says quite calmly, “Daddy George is not here — he is in heaven.” But then there are the times when Kep is anxious, sad and announces “Oh, I miss Daddy so much.” As usual, he says it like it is — his grief is front and center.

For 55 years as Mike’s “little sister,” he has been teaching me how to live life — all of it. Our April family gatherings will reflect the joys and sorrows that come with a rich life – missing dad at our traditional Easter brunch, and celebrating National Sibling Day. My big brother will guide me through both with a grateful heart!

About Kim

Kim Keprios is a member of The Arc’s National Sibling Council and the Sibling Leadership Network. She has developed and implemented programs for kids and adults who are sibling of people with intellectual and developmental disabilities at The Arc Greater Twin Cities since 1990. Her brother, Michael George (Kep) Keprios, was born in 1955 without eyes with a diagnosis of severe intellectual and developmental disabilities. Advised by doctors to institutionalize Mike, his parents George and Dodie ignored the counsel and brought Mike home to be raised with his siblings. Today, the man who doctors said “would likely never walk or talk” loves to dance, works at Old Chicago Pizza, volunteers at The Arc’s Value Village Thrift Stores, enjoys going to church and loves Country Western concerts.

Why I Got Involved with The Arc’s National Council of Self-Advocates

By Kevin Smith, one of the founding members of The Arc’s National Council of Self-Advocates

The Arc: For People with intellectual and developmental disabilities

I got involved in the self-advocacy movement because it promoted things that I believed in, both as a person with a disability and as just a person.  When I got involved in self-advocacy in the early 90s, people with disabilities were segregated from the rest of the community.  We were categorized as poor, pitiful, and helpless.

I wanted to join The Arc’s National Council of Self-Advocates because this movement has had a huge impact on my life and I want to share it with as many people as possible.  I hope this Council accomplishes two things: To tell people that they have the right to be included in their community and not be shut behind closed doors. The second would be that together, as a national group, the government will hear our needs and make a difference in someone’s life. I want to leave people with disabilities in better shape than when I started.

About The Arc’s National Council of Self-Advocates

The NCSA was developed to foster the active involvement of individuals with I/DD in the work of The Arc. Its primary purpose is to empower persons with I/DD to voice their opinions about what is important to them and to ensure that they are afforded the same opportunities as everyone else to have a meaningful life in the community. In joining the Council, members will be able to network with others who are involved in advocacy work, educate the public about the issues that are important to people with I/DD, and become active leaders in their communities.

Half a World Away But So Close

By Amberley Romo, sibling of an individual with I/DD and student in China

Amberley and Caroline Romo

Amberley and Caroline Romo

I’m currently halfway across the world from my sister Caroline studying the Chinese language in Beijing. But I’ve never felt closer to understanding her than I do right now; I can’t believe I had to come all the way to China to understand just a little bit better what every day is like for her.

Incredibly Unique

My sister is incredibly unique; She is almost always infectiously excited and happy, and has a dynamic personality that lights up any room. She is obsessed with dogs, adores babies and her favorite thing in the world is cooking with our mom. She also has a genetic disorder called Angelman Syndrome. Caroline is essentially nonverbal, but like most people with Angelman Syndrome, her intelligence and understanding of what’s going on far surpasses her ability to communicate about it. She is astoundingly emotionally attuned.

Outside of our family and close friends, who understand Caroline’s modified sign language and body language, Caroline has never been able to effectively communicate with strangers without the aid of a communication device. It’s gotten better through the years: We’ve gone from Boardmaker laminated squares with Velcro on the back, to a dinosaur-sized DynaVox augmentative communication device, to the Proloquo2Go app on an IPad.

A New Perspective

I began to see things from Caroline’s perspective when I signed a pledge to speak only Chinese from Monday through Friday for my language immersion program.

I’ll be frank: I’m not exactly fluent. (I started learning eight months ago.)  All of a sudden day-to-day interactions such as ordering from a menu and asking directions can induce a panic attack. I’m very aware of how much attention and help I need, especially when there is a line of people behind me waiting for something; I feel guilty. And the pressure of the expectant look on the face of the person who’s waiting for me to ‘get it’ only makes me shut down more.

“I have an Easy Button”

And that’s just the beginning. What’s most frustrating about being limited to only Chinese isn’t that Chinese is difficult (although it certainly is!), it’s suddenly having difficulty expressing the deeper thoughts and complex feelings and needs with the ease to which I am accustomed in English. Every thought-expression is a conscious process, if not always a linguistic battle.

The first time I felt the ‘shut down’ moment I was trying to have a conversation in Chinese with my roommate. I got to the point where I just wanted to put my face in my hands and block her out. At that moment, I had an extreme sense of déjà vu. With Caroline, if something got too hard or too frustrating, she would put her face in her hands to shut us out. The realization felt like being backhanded; before I even realized the connection I had made, I felt like crying.

But ultimately, I do have an “easy-button.” I can simply opt-out of the language pledge. For Caroline, there is no “opting out.” Even though I have a deeper understanding, I can never know what it’s like to not have that escape hatch, and I have so much more appreciation for her efforts.

Amberley Romo, 21, is a recent graduate of American University and worked for The Arc’s Washington, D.C. office as an intern and brand coordinator. She is currently enrolled in a language immersion program in Beijing, China. She is also a member of The Arc as a sibling and a supporter of the movement for people with intellectual and developmental disabilities. The Arc recently launched a National Sibling Council and has partnered with the Sibling Leadership Network to engage people like Amberley as they face the unique challenges and rewards that come from being a sibling of someone with I/DD.

Welcoming Amy Goodman to The Arc

Amy GoodmanBy Amy Goodman, Co-Director, The Autism NOW Center

Hello, my name is Amy Goodman and I joined the Autism NOW team in November as the new co-director. I live in Harper’s Ferry, West Virginia, and I am on the Autism Spectrum. I learned about my disability at a later stage in life, actually at the age of 33. My brother’s friend suggested that I try to get diagnosed. My brother claims it all started with the Grateful Dead. If it weren’t for Dead Net Central, he wouldn’t have ever met this friend. I finally found what I was looking for, answers to my questions and a diagnosis.

I was relieved to finally have a diagnosis and a name for some of the issues I was having. With that diagnosis, I was finally able to put my life in perspective and focus on who I am. It was because of this new found information that I went to graduate school and got my degree in Special Education with a focus on Autism at Marshall University in Huntington, West Virginia. I was accepted into a separate program at the Autism Training Center (ATC), at Marshall for students with Asperger’s syndrome/High Functioning Autism (HFA), which gave me academic support, individual support, and social skills I needed to live independently in my own apartment. I was the first graduate student, the first female, and the first individual to graduate from the ATC.

After graduate school, I worked as a Service Coordinator for Birth to Three. I had that job for about four years and I decided I needed to change my focus and get a job that applied my talents in a different way and helped to support me as an individual. I applied and looked for a job for more than a year and a half, and then I finally tried something I thought I would never do, networking. It paid off and I got a job at The Arc as co-director of Autism NOW. I have been at this job for about two and half months and I love it and everything about it.

The job at the Arc has given me my independence in many ways. I now am self-sufficient, I am an advocate for myself and I am empowered to be who I want to be. I have proven once again that individuals with ASD can and should be hired to work to the best of their ability.