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.

Apostrophe Magazine Cancels “Can’t”

By: Jim Tracy, Editor of Apostrophe Magazine

Can’t and shouldn’t. Too often those words turn into “could have” and “should have” — regrets about lost opportunities. Apostrophe magazine helps turn “can’t” and “shouldn’t” into “can” and “should.”

The name comes from a song by the late rocker Frank Zappa about a man talking to his dog. We all can relate to that, but in Zappa’s song, the dog talks back.

“You can’t say that!” the man tells the dog in disbelief. “I do it all the time,” the dog replies. He talks, he says, even with all the apostrophes thrown his way: can’t, won’t, don’t and shouldn’t.

People with disabilities face the same apostrophes. Too often they’re told what they can’t do. Apostrophe magazine emphasizes what they can do. Every issue features stories about people living productive lives and achieving success at home, at work and at play.

Lissie Clark, a 34-year old businesswoman from Great Falls, Mont., is a good example. Lissie has overcome fetal alcohol syndrome and other obstacles to start a successful business. Today, she operates Lissie’s Luv Yums, baking and selling all-natural dog biscuits to customers across the United States. At the same time, Lissie uses her business to educate people about the dangers of alcohol consumption when you’re pregnant.

Apostrophe also gives readers practical information they can use every day. A staple of the magazine are how-to features. In past issues we’ve explained, using words, graphics and photos, how to make a hearty clam chowder, how to paint a room and clean up afterward, how to plant a vegetable garden, how to build a birdhouse, how to shop wisely for groceries, how to file a tax return, and how (and where) to vote.

In “It’s the Law,” Disability Rights lawyers have written about guardianship, end of life issues and the Olmstead Decision.  We tell our readers about websites worth visiting and books worth reading. A recent issue included a review of The Everyday Guide to Special Education Law and the companion workbook.

Every issue includes a column by a writer from People First. Contributors have explained to Apostrophe readers the marriage penalty, self-advocacy and the campaign to end the use of the “R” word. The Winter 2012 issue introduces “Jigsaw,” a cartoon strip created by Tess Langston, a young woman with autism.

Like The Arc, Apostrophe believes in promoting and protecting the human rights of people with intellectual and developmental disabilities and supporting their full inclusion and participation in the community as long as they live. We share The Arc’s core values of people first, equity, community, self-determination and diversity.

We believe the power of the pen (and the camera) can help make that philosophy a reality. Our stories and photos show people achieving independence, contributing to their communities and enjoying life. We emphasize human dignity and take pains to use people first language.

A subscription to Apostrophe (4 issues for $19.99) will help us deliver our most important message: “Forget Can’t and Don’t — We Can and Do.”

NOTE: The Arc has established a relationship with Apostrophe Magazine to bring you a valuable new resource and a refreshing perspective on what a publication for people with disabilities can be. You’ll find guest columns from The Arc in the pages of Apostrophe and on their blog in the coming months and below is a guest post from the editor of the magazine.

Martha and Me

By Nancy Webster, Vice President of the Board of Directors of The Arc of the United States.

Nancy and Martha Webster

“Martha inspires me in many ways and we are a wonderful and strong team.” – Nancy Webster, sister of Martha and Vice President of the Board of Directors of The Arc of the United States.

Being a sibling of a person with an intellectual or developmental disability (I/DD) is interesting, funny, frustrating, proud, challenging, loving and respectful.  A long-lasting relationship that adapts and evolves, it’s a partnership that not everyone understands.  But other siblings do.

In any family, brothers and sisters often think of themselves and each other very differently from the ways parents do.  Even when we were young, I could usually convince my parents to let Martha try something they were worried that she could not do by telling them that I would do it with her.  It was my belief in her that gave her the courage to learn how to swim, climb up the slide and care for her prosthesis.  Today, when Martha wants to try something, we team up to figure out how to tell and show others, “here’s how it can work.”   We know we’re stronger together, and so together we have learned advocacy.  Martha calls us “the sister team.”

“Martha inspires me in many ways and we are a wonderful and strong team.”

I often think how wonderful it would have been for us to grow up knowing other siblings.  How amazing it would have been to hear another sibling’s stories – to learn how to manage something differently, to share anger, to boast of an achievement that to my friends might seem trivial, but another sibling knows the triumph.

Frequently I talk with adult siblings whose parents are aging and are now facing the challenge of learning all of the intricacies of supporting his or her sibling.  In the interest of “protecting” them, their parents have not shared information.   Where can they turn for guidance and support?  The Arc’s National Sibling Council is a welcoming network that identifies with siblings and helps them connect with other siblings to share information and experience.  It is exciting to think that I can call someone and ask “how did you know how to….?” “What can we do about…?”

This is an opportunity to connect and improve the lives of future siblings and make their paths less daunting. I’m thrilled to share Martha’s and my story, and I hope you join me on The Arc’s National Sibling Council.

My Trip to the White House as a Champion for Change

Champions of Change in Washington, DC

Champions of Change at the Embassy of Tribal Nations in Washington, D.C.

By Morgan Fawcett, Self Advocate

I am Lingít, from the Wolf Moiety and Kaagwaantaan from Kook Hít, the Box House. My Lingít name is Sheens and my English name is Morgan Fawcett. I am 19 years old and I live with Fetal Alcohol Spectrum Disorder (FASD). On December 1st, eleven indigenous youth were recognized as Champions of Change at an event at the White House for their work in each of their respective communities. The Champions came from different backgrounds, hometowns, Tribal Nations, and fought for their communities in different ways but they each worked toward the same goal; change, a small word with a huge connotation.  I would like to recognize 10 of the Champions before continuing:

Teressa Baldwin: Native Village of Kiana, LeVon Thomas: Navajo, Madeline Sayet: Mohegan, Desiree Vea: Native Hawaiian, Iko’tsimiskimaki “Ekoo” Beck: Blackfeet, Emmet Yepa: Jemez Pueblo, Lorna Her Many Horses: Rosebud, Tiffany Calabaza: Kewa (Santo Domingo Pueblo), Cassandra Steele: Pomo, and Dallas Duplessis: Alaskan Native.

I was selected as one of the Champions of Change for my family’s efforts to raise awareness and understanding of FASD.  I’m a member of the “Self-Advocates with FASD in Action” network, run by The Arc and the Substance Abuse and Mental Health Services Administration FASD Center for Excellence.  I and the other Champions were brought to Washington, D.C. to be honored for our work and to gain a better understanding of the many ways of leadership. December 1st, the Champions of Change were taken to the Eisenhower Executive Office Building and organized into discussion panels to present our causes to Tribal Leaders and U.S. Government Officials alike. After the panels were completed, we were taken to the West Wing of the White House for a Twitter Question & Answer session. The day was wrapped up with a bus tour of D.C. and a reception, and the events ended after 8 in the evening.

December 2nd, however, was the big day. This day started early in the morning with a trip to the Department of the Interior, to participate in the opening and closing session of the Tribal Leaders Conference put on by the White House. Not only did we get to listen to current legislation and laws that positively affect Tribal Nations and have a basic overview of discussions between the U.S. Government and Tribal Nations, the Champions were able to meet, shake the hand of or hug and take a picture with The President of the United States. Waiting was the hardest part; time seemed to come to a standstill, as time passed, our anticipation grew. But the in the end it was worth the wait. To add to the excitement, President Obama mentioned 3 of the 11 champions in his address to the Tribal Leaders.

To sum up this experience in a few short paragraphs is next to impossible, but in closing I have to say this trip was a wonderful opportunity to grow as a youth leader as well as meet other young people that share a common goal. I wish the best of luck to the other Champions in all of their endeavors. I would like to thank everyone who has helped and supported all of us as we fight to bring about change.

We, as indigenous youth, are riding the winds of change, and we are knocking at your door, but who is willing to answer?

Gunalchéesh ax x’éit yee sa.aaxí (thank you for listening),

Morgan Fawcett

A Visit to Washington: From Nathan’s View

By Nathan Bauer, Self-Advocate for The Arc and Hammer

Thank you for inviting me to share a blog about my trip to Washington DC for Hammer to meet with my friend the great Senator, Al Franken. He is my friend. When I was at The Arc Minnesota town hall at Hammer to testify with Al Franken we had a chance to get to know each other. He talked with me again at Special Olympics and it was just the two of us. We laughed and told jokes. After that Al Franken came to my house for a visit. I showed him around. He asked me to come to Washington to help him advocate for disability rights.

Rena came to my house that day for a Hammer story and she interviewed us for the news on KARE 11. [A quote from Nathan in the interview about the possible budget cuts: “And we going to talk to national leaders at The Capitol and we going to talk about the budget, the money and we don’t need no more cuts.”]

My Mom, Dad, Tim and Lynne from Hammer, and Adrian our cameraman – we all flew to Washington to see Senator Franken and film. That is when I got to visit The Arc’s national office. Thank you to The Arc for showing us how to get to the press conference for the ABLE act and being so nice to my friends and me. Thank you – Peter, Kristen, Sarah, Marty, Maureen, Pat and William.

A Kid Is a Kid Is a Kid…

Reflections From a Different Journey Book CoverBy Tracy Wright, The Arc of Maryland

The following is an excerpt from “Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew” sharing Tracy’s perspective on what she wishes her parents had known about raising a child with a disability 30 years ago. Now an adult, Tracy lives in Rockville, MD with her son and her service dog, working at The Arc of Maryland and volunteering for other organizations helping people with intellectual and developmental disabilities.

Two things that my parents should have known while I was growing up are the importance of treating me like any other kid and how to talk openly about disabilities. If they had done that, I would not have spent so much time worrying that it was my fault that I was being treated differently. It also would have helped me to know that I was smart and could learn things, just in a different way.

When I was young, I went to a special education wing in my school. We were kept away from the regular population. It made it hard to know how to make friends and build relationships with people. This didn’t prepare me for the things that were going to be expected of me outside of the special education wing. If I would have been treated the same as other kids in the family and we talked about my disability, it would have helped me to think about my future. No one ever asked me “What do you want to be when you grow up?” My family members were afraid to talk about this because no one knew what my future could be.

Kids with disabilities are going to grow up. They need to think about a future and plan like anybody else. If we had been more open about my disability, maybe we could have talked about my future. We also might have looked for more options, rather than just where the “special” people went to live.

Remember, when you get caught up in the whole disability thing, enjoy all your children. Even try to enjoy the struggles—it will make you a better person. Disability does not have to be this bad thing that people cannot get past to enjoy and live life. You just might have to go about it in a little different way.

Want to learn about “Reflections from a Different Journey: What Adults with Disabilities Wish All Parents Knew”? (McGraw-Hill, 2004; DisABILITIESBOOKS, 2011)  Visit www.disabilitiesbooks.com. A portion of sales benefits The Arc. When you order online, please enter “The Arc” into the Your Comments space at the end of the Payments page. To order by mail: send $31 to: DisABILITIESBOOKS, 44 Washington Street, #913, Brookline, MA 02445. Write The Arc on your check.

Hammer Travel and Becky Meet The Big Apple

The Arc and Hammer Travel have had a long standing friendship and partnership working for a common cause. For the last few years Hammer Travel has even been the exclusive travel sponsor for The Arc’s national convention.

Through this partnership, The Arc and Hammer have helped a number of individuals with intellectual and developmental disabilities travel and pursue dreams that otherwise would have seemed unattainable. A particularly moving story is Becky Wilkinson’s journey to New York.

Group shot at Central Park with Becky and Hammer Travel

Group shot at Central Park with Becky and Hammer Travel.

Becky, 27, always dreamed of traveling to New York City. Unfortunately, living with Cerebral Palsy and Arthrogryposis makes traveling a challenge both physically and financially for Becky and her family. Luckily, Susan Wilkinson, Becky’s mom, was forwarded an email from The Arc of The United States highlighting Troy, an individual with an electric wheelchair, who had recently gone on a trip with Hammer Travel.

After contacting Hammer Travel to learn more about ways to make travel accessible for individuals like her Becky, Susan had new hope. She soon started a fundraiser to get the $2,220 needed for the trip. Susan even emailed an array of celebrities in hopes of finding someone interested in helping Becky.  Finally, her work paid off when Rory Albanese, a comedian and executive producer of The Daily Show with Jon Stewart, offered to donate the outstanding balance needed for the trip. In an even more generous gesture, Rory asked for Becky’s itinerary and offered a personal tour of The Daily show studio.

Jon Stewart with Hammer Traveler’s Becky and Michael

Jon Stewart with Hammer Traveler’s Becky and Michael.

This past October, Becky’s dream came true as she joined five other individuals with intellectual and developmental disabilities on a trip to New York City with Hammer Travel. While in New York, Becky and the group viewed a taping of the Today Show, met the hosts, visited the Statue of Liberty, Top of the Rock and Rockefeller Center, Central Park and the Guggenheim Museum. One of the most exciting parts of the trip was a VIP taping of The Daily Show with Jon Stewart, where Becky was able to meet Rory Albanese and thank him for funding her trip to New York. The entire group was able to meet John Stewart after the taping as well.

Becky and Rory

Becky and Rory on the Daily Show set.

More photos available in a Facebook album.

Video available above with an extended version on Hammer Travel’s YouTube channel.

Becky’s story is a reminder that dreams can come true. We thank Hammer Travel for their work to make this dream a reality and welcome your stories as well!

Some Thoughts from Tyler Smothers on his Recent Trip to Washington, DC

The Smothers Family

The Smothers Family: Tyler Smother, Cindy Smothers, Jay Smothers and Josh Smothers – visit The Arc's National Office. Tyler Smothers won The Arc's Achieve with us Contest, held last summer.

Winning The Arc’s “Achieve with us” contest was such an exciting experience for me. As if winning wasn’t enough, part of the prize was a trip to Washington, DC to meet with members of the Iowa Congressional Delegation and The Arc’s national office.

Tyler Smothers and Peter V. Berns

Tyler Smothers, and The Arc's CEO Peter Berns, at The Arc's national office during Tyler's visit to Washington, DC. Tyler Smothers is The Arc's Achieve with us Contest winner.

Arriving in DC was a thrill, but even better was getting to The Arc’s office! I loved the banner that said “Welcome Tyler” when we got there. I was also given a bag with The Arc logo and other neat stuff, like The Arc vest that I was able to wear for part of my trip (The Arc’s CEO, Peter Berns was even wearing his vest when we met!). I thought meeting the Arc staff was great and everyone was very friendly, I really enjoyed meeting William Washington, The Arc’s receptionist!

My first day was busy with meeting the national staff and then a trip to The Holocaust Museum. We walked to lots of memorials and I liked the pretty sites. I loved the hotel and it even had a gift shop!

Senator Tom Harkin and Tyler Smothers

Tyler Smothers, The Arc's Achieve with us Contest winner, meets with Iowa Senator Tom Harkin with his mom, Cindy Smothers.

The next day I visited Capitol Hill to meet with Senator Tom Harkin, Senator Chuck Grassley, and Congressman Dave Loebsack. I thought the Senators and Representative were friendly. I told them about my services and supports in Cedar Rapids and why they are important to me. I told them about winning the Arc’s “Achieve with us” contest and doing a fundraiser for the last 4 years now and raising over $40,000. My mom got to talk to them too about not cutting Medicaid and why that would be bad for so many people like me. Congressman Loebsack’s staff even gave me a personal tour of the U.S. Capitol. I loved the Capitol and getting the tour and seeing all the neat stuff there, like lots of big statues.

On my last day in DC, my family and I were given a tour of the White House. It was a shame that President Obama was busy, but I enjoyed the tour of the White House and going on the elevator in the White House kitchen with the Secret Service and my dad.

I thought the trip was great and fantastic. I loved taking the metro to the airport and riding in the accessible taxi to get to the Hill. The whole trip was a blast and I am sharing pictures with all my friends

Thank you for all that The Arc does for me, my family, and people like me all over the country.

Joey’s Story: King of ‘You Can Do Anything!’

Note: This post was written by our own Sarah Bal, as told by Joey Ortiz.

My name is Joey Ortiz. Recently, I had the honor of being voted Homecoming King at Santa Maria High School. I want to share my story with you.

I have Down syndrome, which affects many individuals throughout the United States. I made the decision a long time ago not to let anything get in my way, not even Down syndrome. I work at a local supermarket everyday through a vocational education program and enjoy the opportunity to work in my community. Like my classmates I enjoy school and work hard to complete my assignments on time.

One day a few weeks ago I decided that I wanted to become Homecoming King. A teacher asked me a few days later if I was still interested and I registered to be one of the nominees. I rallied my friends together and we made posters and hats to promote me around school. I went around and spoke with other members of the student body, some that I had never met before, and told them that I was running for Homecoming King. A lot of people were surprised, but most people said, “Go for it Joey!” and that is exactly what I did. Their encouragement helped me feel more confident and ready to keep campaigning.

The Homecoming Rally was an exciting event for everyone at school. When all of the candidates were presented everyone clapped. When my name was announced there was a ton of applause and people began to chant my name. I realized then that I had a chance at winning.

That night at the Homecoming game people began to chant my name again while they stamped their feet in the bleachers. Then to my surprise and delight, I was elected Homecoming King. All of my work had paid off, and everyone at the school chose me. All I can say is that it makes my heart glad to think that so many people like me.

I just want anyone with Down syndrome or another disability to know that you can do anything!

Answering the Question: What has Medicaid Done for You?

Javi Guzman

Javi Guzman, age 17, has autism and a debilitating connective tissue disorder called Ehlers – Danlos Syndrome, type 3. He visisted with senior White House officials yesterday to talk about what medicaid cuts would mean to him.

By Linda Guzman
Assistant Director of Operations, The Arc of North Carolina

Riding the metro to the White House today, I had no idea what Javi and I would be in store for. My son Javi Guzman, age 17, has autism and a debilitating connective tissue disorder called Ehlers – Danlos Syndrome, type 3. We were going to the White House to talk to President Obama’s senior staff about how Medicaid has changed both Javi’s and my life.

What probably seemed like a simple question didn’t have a simple answer: “What has Medicaid done for you?” What is more telling is what we wouldn’t have if we didn’t have Medicaid. Without community based waivers, Javi wouldn’t be at home – he would most likely be in an institution to receive the care he needs. I wouldn’t be able to work, pay taxes, and be the citizen and mother that I am. Medicaid is our lifeline. With the services Medicaid provides, not only are Javi’s medical needs taken care of, he is learning important skills that will enable him to have the most independent and productive life possible.

I’m deeply appreciative to all those who to took time to meet with us today. I am especially grateful to Congressman David Price who stepped out of a subcommittee mark-up to listen to Javi’s and my story in the hallway, and even took an extra moment so Javi could get a picture with him.

Today showed me the strength of our voices and our stories. The officials we met with told us, “If Members of Congress could sit down with families like yours, they would stop seeing the world in dollars and cents.”

Its stories like mine and yours that will make our elected officials see things in true light, not just in spread sheets.

Join The Arc’s “Don’t Cut Our Lifeline” campaign today, and make a difference.