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My Trip to the White House as a Champion for Change

/in /by Guest Blogger

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 2, 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

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A Visit to Washington: From Nathan’s View

/in /by Guest Blogger

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.

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A Kid Is a Kid Is a Kid…

/in /by Guest Blogger

By 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.

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Hammer Travel and Becky Meet The Big Apple

/in /by The Arc

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.

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.

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.

More photos available in a Facebook album.

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!

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Thoughts From Tyler Smothers on His Recent Trip to Washington, DC

/in /by Guest Blogger

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.

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!

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.

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

/in /by Guest Blogger

This post was written by The Arc’s 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!

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Answering the Question: What Has Medicaid Done for You?

/in /by Guest Blogger
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, and make a difference.

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Discrimination in the Workplace: Has It Happened to You?

/in /by The Arc

The U.S. Equal Employment Opportunity Commission is taking up a troubling employer discrimination lawsuit. Jason O’Dell of Maryland applied for work as a lab technician through a major national employment agency. The opportunity seemed promising, but shortly after disclosing his Asperger’s diagnosis, the lawsuit states that Jason was told that the position was “on hold.” But the agency allegedly kept on recruiting to fill the job.

So the federal government stepped in and slapped a lawsuit against the firm, called Randstad. Since this is a huge, national employment agency, The Arc wants to know – has anyone out there had a similar experience with the company? We can’t allow discrimination like this to be tolerated.

Share your story with us in the comments, or email Kristen Bossi at bossi@thearc.org.

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“The Story of Beautiful Girl” by Rachel Simon

/in /by Shelly DeButts

May marks the official release a new book from Rachel Simon, “The Story of Beautiful Girl.” (Available now on www.amazon.com) Ms. Simon is a frequent speaker at events hosted by Chapters of The Arc, including The Arc of Kentucky’s recent state conference thanks to the popularity of her 2002 memoir, “Riding the Bus with My Sister (2002), which focused on her sister Beth, who has a developmental disability. That book was later turned into a TV movie starring Rosie O’Donnell and Andie McDowell. Some details were changed and fictionalized, but the core messages of Beth’s right to self-determination and the challenges and rewards of the sibling bond were left intact.

In “The Story of Beautiful Girl,” Ms. Simon describes two characters with disabilities, Lynnie and Homan, living in an institution in 1968 who fall in love, escape and have a child that they hide away when the authorities catch up to them and Lynnie is forced back to the institution. The book’s publisher, Grand Central Publishing, is predicting a New York Times Bestseller List level of success for this dramatic tale. It will be interesting to see how readers react to a story that touches on issues of intellectual and developmental disability, institutionalization, abuse, race, love, parenting and communication. Find out more about the author at www.rachelsimon.com.

Did you read it? What did you think?

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Meet Sam Jenkins

/in /by Shelly DeButts

Usually, you’ll find The Arc, the nation’s leading and largest organization for people with intellectual and developmental disabilities lending a helping hand. But in this case, it’s Sam Jenkins who lends a hand as a motivational speaker for The Arc’s New Jersey chapter leading people with disabilities like himself to become their own advocates. Watch Sam lead a group of eager self-advocates in discovering their inner strengths and speaking up for themselves.