Rockstar Campers

by Rachel Talen

Avril visits Easter Seals at Camp Oakes

I have an exciting announcement from The Avril Lavigne Foundation! Last summer, Avril paid a special visit to Easter Seals Camp Oakes in Southern California, meeting with the campers, the volunteer staff and learning about their camp experiences. Avril loved her time there so much that she’s created a way to give even more campers the chance to go to summer camp without worrying about the cost. Through her foundation, Avril created CAMP S.T.A.R.S., which stands for Summer Time Avril Rock Stars, and will help send 50 kids with disabilities to camp this summer who otherwise might not be able to afford it. CAMP S.T.A.R.S. will launch at 5 sites across the U.S. and Canada this summer, including Easter Seals Southern California, Easter Seals Washington, Easter Seals North Carolina & Virginia, Easter Seals Greater Houston, and Easter Seals Alberta, Canada.

CAMP S.T.A.R.S. is an expansion of the Avril Lavigne Foundation’s Rockstar Club at Easter Seals, and it’s designed to support recreational programming for kids and youth with disabilities to explore their talents, make friends, have fun and learn new skills. Avril Lavigne went to summer camps when she was a kid, so she knows how valuable a summer camp experience can be. Seeing the campers being able to participate in fun activities and make new friends was a great feeling that inspired her vision for The Avril Lavigne Foundation.

I love a quote I heard from camper Joy Durkee who has been attending Easter Seals Camp Oakes in Southern California for 20 years: “Camp helped me make friends, learn to take care of myself and become more independent,” she said. “It is truly the happiest place on earth!”

Disaster Preparedness when you have a disability

by Patricia Wright

Communities across the United States face the threat of disasters almost every day, both large and small, and nearly 25 percent of the people in these communities are children. Some of these children have disabilities, and that’s why the Institute of Medicine of the National Academies recently invited Easter Seals to provide expertise for a workshop called Medical and Public Health Preparedness, Response and Recovery Considerations for Children.

Easter Seals also addressed the unique needs of children with disabilities on a panel called “Augmenting the Reach of Public Health Planning through Community Action,” and many disaster preparedness resources were highlighted at the meeting. Here are two resources that address specific needs of individuals with disabilities:

• OHSU Disaster Preparedness Disability Toolkit (PDF) for Persons with Disabilities
• Green Mountain Emergency Preparedness Project

There is much to be learned and done to ensure ALL people are safe in an emergency, and I look forward to Easter Seals continuing to play an important role in making all communities safe for all members.

Reframing beauty

by Elsa Remak

Picture of Grace by Rick Guidotti as featured in the NBC article

A coworker passed along an NBC article/photo spread the other day, and the vivid image of a girl named Grace drew me right in. I was hooked, and I hadn’t even read the article yet!

Once I got to reading, I learned that Grace is a social second grader who’s nicknamed “The Queen.” Grace has Down syndrome, but this image was not about Grace’s disability. It was about the beauty of her ear-to-ear grin. I scrolled down the page and was greeted by more powerful images of happy kids and teens in their element.

The photographer responsible for these beautiful photos is Rick Guidotti. Guidotti has spent the last 15 years of his career taking stunning pictures of people with disabilities. He was inspired to take these photographs after flipping through a medical journal about genetic disorders. Shocked at the lack of humanity the images displayed, he made it his mission to change the way society looks at people who may not fit the conventional beauty mold.

I watched the newscast that went with the article and was inspired by Guidotti’s passion for his work. His face lights up when he talks about how gorgeous and amazing the people he photographs are, and now he is persuading doctors to reevaluate the outdated images in their journals. “The idea is to put that humanity into medicine. To make sure we don’t see a diagnosis, but a human being,” Guidotti said. He wants people to see those with differences not as victims, but kids and people first and foremost.

The NBC piece was touching and left me yearning for more. During my lunch breaks I discovered more about this amazing photographer and his mission. I learned that Guidotti left behind his life in New York City and Paris (working for the likes of Elle and GQ) to start Positive Exposure, a non-profit organization that is described on its web site as “utilizing photography and video to transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism.” I encourage everyone to look through Positive Exposure’s gallery of photos. Guidotti’s work is crucial in a society where photoshopped models dictate what “beauty” is. These images convey more beauty and power than any fashion magazine can.

This bike ride was absolutely precious

by Beth Finke

Earlier this week Chris Dillon, the Veteran Services and Community OneSource Manager here at Easter Seals, shared a wonderful story about a long bike ride he took to help people who have MS. I thought you blog readers would enjoy it as much as I did.

You’re not going to believe this

by Christopher Dillon

Just got in. Sitting is a little difficult, but it was definitely worth my little bit of discomfort. Here’s why.

At the rest stop on Mile 76 on Saturday, I met a woman who was a volunteer and was just thanking everyone for riding. I came up to get some Gatorade and a lens cleaner for my sunglasses, and she thanked me for riding. She kept saying that it was because of the riders that she was able to get the new medicine to keep her MS in remission for nearly 2 years.

We just started talking, and I found out that her husband was a Vietnam Veteran and he had called an organization called Easter Seals and spoke with a lady named Shannon Thompson. She said that Shannon was wonderful and gave her husband a list of organizations that could help him. “And they have!” she exclaimed.

She then asked me what I do. “You’re not going to believe this,” I told her. “But I am the Veteran Services and Community OneSource Manager for Easter Seals, and I work with Shannon.” She came around the table and gave me a hug and told me to give Shannon a hug for her and her husband. The expression on her face is something that I will never forget. Absolutely priceless.

At that moment it didn’t matter that I had 24 miles to go, 17 miles of it into a strong head wind, legs feeling like spaghetti and a big challenge to sit on a bike seat. It was definitely worth it! I already know I am going to sign up and do it again in 2014. And next year? I think maybe 175 miles…!

Telling their stories on Capitol Hill

by Maynard Friesz

Easter Seals job training participants and program staff from across the country met recently with key Congressional offices to discuss Easter Seals’ Senior Community Service Employment Program (SCSEP). SCSEP is a U.S. Department of Labor program that provides low-income, unemployed individuals, age 55 and older, with temporary work experiences and job training to help them find permanent employment in their communities.

Easter Seals is a national SCSEP provider with programs in eight states:

• Alabama
• Connecticut
• Illinois
• New Jersey
• New York
• Ohio
• Oregon
• Utah

As part of the Easter Seals Participant Advisory Council national conference held in Washington, a dozen Easter Seals SCSEP participants and staff described the program and their training experiences at a series of educational meetings with congressional staff. Their stories let congressional staffs know the real impact of SCSEP, the only federal program dedicated to helping older workers find jobs.

The Senate is preparing to review and approve the President’s proposed 2014 budget, so this meeting was particularly timely. SCSEP participants were given a platform to share how the program has made a positive difference in their lives, and each speaker walked away empowered and knowing that their voice had been heard.

Self-advocacy opportunity!

by Patricia Wright

Encouraging my students to develop self-advocacy skills was a huge part of my job when I was a teacher. People with disabilities may need support, but everybody needs to have a voice in making their own life decisions. As a teacher, I felt that one of the most important things I could teach my students was for them to realize their personal power and know how to use their communication skills to convey their wants, needs and opinions.

Researchers from the University of South Carolina are looking for 15 to 24-year-olds who have Spina Bifida, Muscular Dystrophy or Fragile X Syndrome who are willing to share about their school, work, family, and community life in an online survey.

The researchers are looking for information to help identify policies and services needed to be more responsive to the needs and experiences of these youth. Sharing information as part of this research is a great way to advocate for yourself. Let people know what you think, and help guide policy development.

If you are interested and qualify, consider taking the survey. You can also contact Margaret Holland at (803) 434-2365 or Margaret.Holland[at]uscmed[dot]sc[dot]edu to learn more and get any questions answered.

I should have worn waterproof mascara

by Elsa Remak

It was the great “pinkout” of the summer, complete with a pink carpet and boas galore. The tenth floor of the Spertus Institute on Chicago’s Michigan Avenue was transformed into a pre-teen girl’s version of paradise Wednesday for the premiere of the HBO documentary Miss You Can Do It. Many of us here at Easter Seals Headquarters left our cubicles behind for a day full of laughter, tears, and of course, lots of Justin Bieber music at the film’s premiere. It was a celebration of five incredible families, a brave filmmaker, and an inspirational beauty queen who combined efforts to create the Miss You Can Do It HBO documentary. This was a day where disabilities meant nothing and inner-beauty meant everything.

From the minute the young guests arrived, they were treated to a celebrity experience. The girls worked the pink carpet, sipped on fizzy mocktails, and had their pictures taken with the building’s stunning lake view as a backdrop. After an hour of mingling and delicious food (I’m still dreaming about the mini hot dogs) it was time for the film’s premiere.

For 70 minutes, the 200-person audience got a glimpse into the lives of eight amazing young girls. Any negative thoughts on pageants quickly disappeared as the audience learned about Abbey Curran, the Miss You Can Do It founder. Abbey Curran is the former Miss Iowa, and she is the first woman with a disability to compete in the Miss USA Pageant. Curran, who has cerebral palsy, created the Miss You Can Do It pageant to give other girls the chance to feel beautiful.

Filmmaker Ron Davis captured the joys and hardships families who have children with disabilities face. This screening was the first time the families saw the complete film. I should have worn waterproof mascara, because the tears were flowing. Some of the waterworks were out of heartache, but the majority were from joy.

Miss You Can Do It contains so many powerful messages about beauty and disabilities that I found myself smiling for hours after the film was over. Some of us at Easter Seals are already planning our trip to this year’s July pageant.

The celebrity treatment continued after the film: the girls got to rotate between booths for hair, nails, and facepaint. I felt star-struck approaching the girls after the film. One of the film’s stars, the hilarious Ali Shanks, complimented my playlist for the event, but mentioned that I missed some of Bieber’s good songs (duly noted).

As I looked at the girls’ smiling faces I realized, for the millionth time, how lucky I am to have this summer internship at Easter Seals. This event was life-changing — not only for the stars of the film, but for me too. These happy young girls and their courageous families will continue to inspire me long after my internship is over.

I encourage EVERYONE to tune in for the HBO premiere of Miss You Can Do It on June 24th. This film will educate and inspire people of all ages. This is not some “toddlers and tiaras” documentary — it’s a 70 minute celebration. These girls have proven that they really can do it.

Paying more than lip service to veterans’ employment

by Col. David Sutherland

Let’s talk about employment for veterans. It’s a hot-button issue, with everyone from the U.S. Chamber of Commerce to the White House urging corporate America to hire veterans. Laws exist requiring companies that do business with the U.S. government to actively pursue and recruit veterans. But does it actually happen? Not as often as I’d like.

Easter Seals is a leading provider of workforce development for veterans. They offer vets the direct services and solutions that are desperately needed. It’s one reason I joined the Easter Seals team and co-founded Dixon Center for Military and Veterans Community Services. Together, we’re able to advise major corporations, businesses, trade organizations, government and philanthropic entities on how to put theory into practice based not on the best practices of others, but rather looking at the conditions and resources of the specific organization.

Consider the trucking industry. The average age of a truck driver is high and it’s not getting any younger. Right now, more than 500,000 drivers are needed across the United States. But state licensing requirements can be restrictive, favoring private-sector experience. Yet we have thousands of young men and women who are driving heavy-duty armored vehicles across hundreds of miles every day in combat conditions. This experience ought to count for something, but so often it doesn’t.

So I jumped at the chance to help when the Teamsters asked me for my assistance in helping vets. I proposed pooling resources at the state level to better enhance their existing training to help turn real-life experience overseas into family-wage jobs. The Teamsters did a state-by-state comparative analysis of commercial truck driver’s licensing and Department of Defense training, and this will allow employers and the states to better understand how, with some legislative changes, they can help returning vets get their trucking licenses by recognizing their credentials from time served in war zones. Through this Teamsters effort, policy change is taking place and targeted training has been developed for veterans throughout the country.

This Dixon Center and Teamsters partnership is now developing mobile training efforts on military installations throughout the country to provide certified civilian licenses before transitioning from the military. We really need help in Arkansas, Indiana, Massachusetts, Nevada, and Tennessee — the top five states with the highest rates of unemployment for veterans returning from active duty, Guardsmen and Reservists. Every industry — not just trucking — needs to put resources on the table. As another example, Dixon Center is assisting the Utility Workers of America by assessing support organizations to enhance opportunities for skilled military veterans going into the gas and electrical utility sector.

It comes down to this: if you’re an employer, recognize that veterans come with real-life skills. Don’t just focus on academic degrees. Also, understand that employment goes beyond recruiting. It has to include training, integrating and retaining the veterans as well as their families. If you’re a state, reassess the credentialing and licensing restriction that don’t take into account the already existing skills of our service members and make the appropriate changes. Taking simple actions will make a positive difference for our veterans, and for your organization too.

“Miss You Can Do It” portrays ability in an empowering way

by Rachel Talen

Pink feather boas, glittery carpet, hair stylists, tiaras, premiere parties, photo shoots, pageant girls and film producers …

These things didn’t pop up in office conversation before I knew about the HBO pageant and documentary Miss You Can Do It, but I’m so glad they did!

Miss You Can Do It profiles several Easter Seals girls with disabilities and their families. This is no Toddlers & Tiaras — it’s heartfelt, it’s real and it portrays ability in an empowering way.

Founded by Abbey Curran, a former Miss Iowa and the first woman with a disability to compete in the Miss USA Pageant®, and former Easter Seals kid, Miss You Can Do It is an inspiration for girls everywhere.

Filmmaker Ron Davis documented the pageant, which takes place one weekend each year. These young girls, along with family and friends, get to be glamorous and celebrate their abilities. No one leaves the pageant empty-handed, with each girl receiving a special award. The film also celebrates the “hero parents” and families, who talk about the joys and challenges of raising a child with special needs.

It was great to hear that HBO, Easter Seals and Comcast would be hosting a Hollywood-style premiere screening on June 18th in Chicago for more than 100 girls and young women, both typically-developing and those living with disabilities. The attendees are going to love the “Glam Girl” activities the premiere party has in store for them — it will be everything the girls need to feel like rockstars, from hair styling and a nail salon right down to volunteers posing as paparazzi, taking photos of the girls walking the pink carpet.

I’m so excited to volunteer at this event and hang out with the girls! We’ll follow up in another post about the party, complete with photos of our Miss You Can Do It celebrities. And mark your calendars for June 24th when Miss You Can Do It airs on HBO!

Imperfectly perfect

by MacKenzie Olsberg

Recently, Temple Grandin was on Katie Couric’s show Katie talking about autism. She provided a lot of fascinating and cheerful stories about what it’s like to have it and what she’s done to adjust. It was incredibly fascinating and I loved her no-nonsense approach to children with autism, specifically about labeling and achievements. Many parents, in her experience, seemed to forget that Jimmy wasn’t just on the autism spectrum … he was also brilliant at math. Suddenly Jimmy wasn’t Jimmy, he was Jimmy With Autism, and there were no more celebrations for his achievements.

The reminder of labels struck a chord with me. You see, I’m not a stranger to autism. I’ve always grown up with autism and disabilities being close, if unspoken, companions in my own life. My father has it, my youngest sister has it. I have two learning disabilities myself. And for the longest time, my family and I defined ourselves by our challenges rather than by our achievements. We weren’t Mac and C. We were Auditory Processing/Dysnomia and Autism Spectrum.

But as I grew older, I began to realize I was more than just what “hindered” me. I had many gifts to make up for my different way of doing things and those layers of experiences and abilities meant I was more than what was “wrong” with me. I may be an awful public speaker, but I was a great writer with a brilliant imagination (as long as I had a thesaurus and time to gather my thoughts). I may have a hard time focusing on one person talking in a noisy crowd, but I was gifted at reading comprehension.

I was imperfectly perfect.

The thought blew me away.

Which is why when I watched Temple speak about autism and looking beyond the “can’ts” into the “cans,” I was ecstatic that someone else knew intimately the struggle of working extra hard to appear normal and shared my thoughts on how it should be. We celebrate achievements for people who fall mostly in the norm — why not celebrate what autism/disabled children are good at and celebrate a little more? Celebrating is good. Differences are good. Remembering we shouldn’t let a label decide who we are, and that we should decide who we are ourselves? Well, that’s just perfect.