The Life is Good Festival 2011

Here is a Guest Post and photos from Heidi Marie-Peterson, project coordinator for DCR's Universal Access Program - thanks Heidi!

I am still waving a ride of enthusiasm and optimism after spending the weekend (September 24 &25) at the Life is Good Festival at the Prowse Farm in Canton, MA. The Life is Good Festival was a two day extravaganza of music, optimism, games, art activities and family fun attended by about 20,000 people. Whether you were there to compete in the seed spitting contest, have a picnic, watch the BMX bike stunt show, contribute to a mural, climb a rock wall, or hang out at the kids stage on a comfy bean bag chair, there was something for EVERYONE! There were absolutely amazing musicians playing throughout the weekend; a few of my favorites included Ray Lamontagne, Michael Franti and Spearhead, Raphael Saadiq, Maceo Parker, Martin Sexton and The Levon Helm Band among others!

In Juan's Words: The Last and First Miles

Here is a fantastic Guest Post from Juan Martin Botero, sharing his story about climbing Mt. Kilimanjaro and why he mentors for Partners for Youth with Disabilities. You can make a donation in support of PYD by sponsoring Juan on Saturday's Rodman Ride for Kids in Boston by clicking here. Donations will be accepted until November 15! Thanks Juan, for sharing your story!!

Often when I go biking long distances or if I go up or down through mountain trails; the last mile is the longest and is the hardest. In the night we started the final approach to Uhuru Peak, the summit of Mount Kilimanjaro in Tanzania (one year ago), skies were clear and there was no moon, so it was extremely cold and it was pitch dark. The light of my headlamp revealed just a couple of feet of trail, and revealed some of the porters who were busy organizing the gear and fitting my chair/device. Still the anxiety and the adrenaline from the previous days were fueling my determination to put a foot in the summit. But it was the last mile… Nevertheless, it was not the time to give up, although I was tired, cold, and knew the trail only in maps, so I did not have a concrete idea of what was coming, only that it was rocky, narrow and steep in some parts.

Change Peoples Lives - Successful Expo in Boston

 

I-Zip scooter user  minimizes use of
wheelchair and even gets out on some trails!

The Rodman Ride has been postponed this weekend due to wet weather but yesterday's rain didn't prevent people with disabilities of all kinds from attending the Change People's Lives Conference and Expo at the Hynes Convention Center in Boston. Kudos to the Institute for Human Centered Design for masterfully convening an event hosted by the Commonwealth of Massachusetts that showcased assistive technology and attracted an enthusiastic crowd!

It has been a few years since I attended an assistive technology expo. It was a treat to talk shop with other professionals and meet people already active in sports and others seeking recreation opportunities. There were panels on four conference themes of Home, Work, Education and Fitness/Sport/Recreation, an exhibit hall of related products and services, a juried design competition and a plenary session that featured a host of inspiring speakers including Governor Deval Patrick, Cheri Blauwet (MD at Spaulding Rehab Hospital and Paralympian), Gianfranco Zacchai (designer), and Gururaj Deshpande (entrepreneur and philanthropist). Assistive technology has high promise as an emerging new market with ideals transcending the "special products for special needs" orientation that has brought us this far. My mind and eyes were opened wider quite a few times during the day - by products, ideas, and people's stories.

 

Talking with a telepresent person via a robotic device.

A few highlights: learning about Fred Fay - an amazing disability rights activist who interfaced with the world from his bed, a robotic telepresence device called VGo that allows you to experience locations you might not physically be able to get to, a woman with an incomplete spinal cord injury that uses an I-Zip scooter as her wheelchair, and a bike called Glide Cycle that allows users to have an unweighted exercise experience. I even found something for myself there - Wrist Assured Gloves - innovative fitness gloves that minimize wrist stress.

It was fantastic to see that fitness for people with disabilities was a major area of dialogue in the conference. Paralympian athletes like Anjali Forber-Pratt are paving the way, but there is still great need for more welcoming and universally designed gyms that work for people with a wide array of variable function. We joined that conversation in panel discussions and handed out loads of information about park accessibility. I have high hopes that more people with disabilities will be improving their health indoors and out!

Juan Botero - Inspiring Mountaineer and Fundraiser for Kids



Juan on his Greenspeed recumbent bike.

This Saturday, September 24th, is the annual Rodman Ride for Kids in Boston - a unbrella charity event in which various local organizations will be raising money through sponsorships. About 1200 cyclists will ride 25, 50, or 100 mile non-competitive tours to raise money for youth-focused social service agencies that support and improve the lives of at-risk children in Massachusetts. Among the cyclists will be Juan Martin Botero, riding 25 miles to raise money for Partners for Youth with Disabilities.



Juan en route to Machu Picchu in Peru.

Juan is a native of Colombia who was born with Ataxia, a genetic and degenerative neurological disease that didn't start to effect his life until he was 26 years old, two years after he moved to the U.S. An experienced mountain climber and guide in Columbia, Juan continues to follow his passion at age 37 from a wheelchair. Through an Iowa-based organization called Alpenglow Adventures, Juan has fulfilled dreams to hike 10 miles to the bottom of the Grand Canyon, summit 19,340 foot Mt. Kilimanjaro, and hike 28 miles to Machu Picchu in Peru. In doing so, he became the first person who cannot walk to access these remote locations. Of these three sites, Juan's favorite trek was Kilimanjaro.



I asked Juan about the adaptive equipment provided by Alpenglow that he used to complete these adventures. The Trailrider got him to the bottom of the Grand Canyon, along with lots of assistance. The kilicart, more comfortable and maneuverable for longer trips, was used in Africa and Peru. Both are assistive devices that allow other hikers to push and pull the wheeled hiker. (Alpenglow welcomes experienced hikers to join trips as porters!) The challenge with this type of gear is building in more independent usage. Juan says, "The more I use the devices, I want to improve their design." I notice this too - there is plenty of room for improvement with adaptive hiking chairs we use in our programs.

Juan and Alpenglow hikers atop Mt. Kilamanjaro.

This will be his third year cycling in the Rodman Ride for Kids. Juan is a inspiring mentor for youth with disabilities. Click here to sponsor Juan on the ride - and help Partners for Youth with Disabilities continue to provide support, understanding and guidance via positive adult role models for youth with disabilities as they strive to reach their personal, educational and career goals. Go Juan!!!!

Other Boston area events this weekend: Get to one if you can!
Change People's Lives - Conference and Expo - Friday, September 23 - Hynes Center
Life is Good Festival - Prowse Farm, Canton - Saturday and Sunday, September 24 and 25

Kite Festivals - A Celebration of Color and Fun!

A slide of the sky viewed through arches made of kites.

My spirits are still soaring after attending yesterday's Capriccio Festival of Kites in Ogunquit, Maine. It was a perfect day for the beach with sunny skies, a touch of clouds, and a gentle cooling breeze. As Meb and I drove down the lane from the center of town to the beach, big "WOWs" escaped our throats as we gazed at enormous kites and quantities of richly colored designs riding the wind.

We had come with a big bag of kites to fly ourselves, but also to help with the event, in exchange for free parking ($20 otherwise!) and a free t-shirt  We donned our t-shirts and became instant judges for the kite decorating contest. Tables were set out in the parking lot (very accessible!) where kids were busy coloring sled style kites with markers. I was pleased to find one young participant in a power wheelchair at the task!



With a fistful of award certificates we strolled down the very crowded beach at high tide amidst a carnival-like atmosphere with hundreds of kites sailing in the air. It was a panoramic scene full of wild creations instilling awe at every step. From the tiniest dancing ladybug kite to the massive powerfoil holding a steady immobile presence above the crowd we delighted in the visual feast of buoyant colors. Our job was to seek out children, admire their kites, and hand out certificates that allowed them to get a free kite or festival t-shirt. What fun we had - even before we got to fly our kites!

Along the way we noticed a few other people with obvious disabilities in the mix and found Nolan, the young participant in the power wheelchair we'd met at the coloring table, now using one of the town's beach wheelchairs with kite in hand. (There is ramp to the beach!) This was Nolan's third year at the event and I know we'll be back too! Next year I hope to see more people with disabilities!



Festival scene at Ogunquit Beach barely hints at the variety
and quantity of kites on site from this angle. The biggest kite
in this picture is enormous.

Upcoming Kite Events in New England: Even a drive-by is worth it if you are uncertain about access! Many kite festivals seem to be free spirited public events, without full details in advance - just show up and enjoy! At kite fly is simply a group on kitefliers who have announced a date and place to show up and fly together. In either case, if you have any, bring your own kites to fly!

October 1, November 5, December 3: KONE Monthly Kite Fly on Nahant Beach, Lynn, MA. Contact Gary Quinton at 781-595-7687 or gquinton@verizon.net for more information. KONE is Kites Over New England, an organization devoted to kite flying of which anyone can be a member. I found out about the Capriccio Festival of Kites and these other events through their monthly calendar.

October 8 and 9: East Meets West Kite and Cultural Festival sponsored by the Chinese Multimedia Society, from 10am - 4pm each day at the Pope John Paul II Park in Dorchester, MA. Pope John Paul II Park has accessible parking and paved pathways with pavilions but no accessible restrooms.



Our favorite kid's kite design on right. We saw several 9-11
commemorative kites, but this one stole our hearts.

October 9: One Sky One World - a worldwide kiteflying event for peace and understanding, with events taking place all over the world. Click on link for more info about this amazing endeavor.

November 12: Holiday Kite Fly on Hampton Beach, NH. Contact Ralph Reed at 978-937-8290 or rreed3@comcast.net for more information. (I can't find a thing about accessibility at Hampton Beach on-line!)

November 13: Veterans Day Fly at Hammonasset State Park, CT. Contact Richard Bromley at 203-288-1582 or arembe@comcast.net for more information. Hammonasset State Park features accessible parking, bathrooms, boardwalk, camping, picnic tables, and beach wheelchairs!

Significant Health Disparities for People with Disabilities - Change That Now!



This family attended our cycling program last week in Hadley
- a perfect example of taking on the fun of improving health!
Photo by Nancy Bazanchuk.

In the past few days I received this update from the Institute on Disability at the University of New Hampshire:

Compared to racial and ethnic minority groups, people with disabilities are generally more likely to experience poorer health, according to a new report from the University of New Hampshire’s Institute on Disability (IOD). The report, “Health Disparities Chart Book on Disability and Racial and Ethnic Status in the United States,” examines the health status of working-age (18-64) people with disabilities, as reported to the Behavioral Risk Factor Surveillance System, the nation’s premier public health survey."

Among the key findings in the report:

• If people with disabilities were a formally recognized minority group, at 19% of the population, they would be the largest minority group in the United States.
• The highest proportion of people who say their health is fair or poor is found in people with disabilities (40%, compared to 23% of Hispanics, 22% of American Indian/Alaska Natives, 18% of blacks, and 8% of Asians). 
• People with disabilities have the least desirable prevalence rates for 10 of the 14 selected health indicators including cardiovascular disease and diabetes.

You can download the full report at IOD's website (link above). Just this much was enough for me to realize painfully (after 16 years of dedicated effort to improving adaptive recreation opportunities!) how important it still is for people with disabilities to find ways to improve their quality of life, get more exercise and enjoy the benefit of the outdoors. With this in mind, I recommend the following upcoming events:

CHANGE PEOPLE'S LIVES - September 23, Hynes Convention Center, Boston. At this day long conference and free expo you can experience the current state-of-the-art of inclusive products and technologies that transform the lives of people with disabilities and older people and enhance everyone's lives. Focus areas are Home, Work, Learning and Fitness/Recreation/Sport. Here is what I know about it: You can even find me there - with DCR's Universal Access Program in the exhibit area where we will have adaptive recreation equipment on display. This will be a great event for tapping into available resources and networking. I hear the Governor is coming! And it will be a GREAT TIME!

LIFE IS GOOD FESTIVAL - September 24 and 25, Prowse Farm, Canton, Massachusetts. This is a doubly beneficial event for kids of all ages! You go to have fun and at the same time your ticket raises money to help kids overcome trauma and life-threatening challenges by supporting Playmakers. There are musical performances by bands throughout the weekend and activities of all stripes including: Art for All Mural, dog show, BMX stunt show, instrument petting zoo, yoga, an endless variety of games, and more. Here's what I know about it: There is a team of doctors volunteering at the event to ensure that people with disabilities can participate in and enjoy the activities! On-line - check out the FAQ's about access for people with disabilities under "Event Info". Email festivals@lifeisgood.com if you have questions before you go. On site, ask for the "access program" at the Information Tent. And have a GREAT TIME!