Last summer, Reverend Dan Osgood of the Greenfield Covenant Church told me about a week he had spent at the Barbara C. Harris Center in Greenfield as chaplain for the Joni & Friends Family Retreat for families with adult children with disabilities.
Reverend Dan said he has been deeply inspired and humbled by his experience as the chaplain at the retreat.
“Of all the burdens I have seen people carry, being the parent of a severely disabled child may be the hardest,” Reverend Dan said. “It is for life, and it is 24/7.”
Reverend Dan said when he greeted a returning parent at camp last year, she told him, “I have been waiting for this for 355 days.”
Families with severely disabled children face financial pressure, exhaustion, isolation, and and stress. These families have very high rates of divorce, with mothers most typically becoming the full-time caretakers.
Joni & Friends is an international Christian organization founded by Joni (pronounced “Johnny”) Eareckson Tada, who became quadriplegic following a diving accident when she was 17 years old, in the 1960s. Joni & Friends has 19 offices across the country as well as ministries around the world providing equipment, including wheelchairs, and support for people with disabilities.
A photo on the wall at the Barbara C. Harris Center shows Tada in a kayak on Otter Lake in 2012. It was the first time she was back in a kayak since her accident in the 1960s.
The Family Retreat provides a week-long respite camp for families with adult children with disabilities. Maria DeGenova of Joni & Friends is the camp director for the Family Retreat, which serves all of New England.
“Our goal is to share hope through hardship, and our vision is a world where every person with disability can find hope and respect,” Maria said.
Thirty-three families attended the Family Respite Camp at the Barbara C. Harris Center last week, for a total of about 155 people, including 65 volunteers, from all six New England states. Isaac, a young man with Down syndrome who was a camper at the retreat, told me he was having “a lot of fun” so far. His buddy for the week was Greg Greer, director of the U.S. Ministry for Joni & Friends, who oversees the organization’s 19 national offices.
The Barbara C. Harris Camp and Conference Center, which is a program of the Episcopal Diocese of Massachusetts, hosts two Joni & Friends camps — one for families with adult children with disabilities in June, and one for families with young children with disabilities in August. The camp is open to families from New England affected by disability.
Maria said it is hard to find a summer camp that is fully accessible and has family-style housing. The Barbara C. Harris Center, unlike most summer camps, was rebuilt after ADA regulations went into effect, and is fully accessible.
“When the families come, we all line the driveway here and cheer for them as they arrive,” Maria said. “We want them to know we have prepared for them and we’ve been waiting for them, and then they get to meet their buddies. Some families come back year after year, and volunteers come back year after year.”
Maria told me that when volunteers request to be one-on-one buddies with disabled campers, the families are overwhelmed with emotion.
“For many of them, it’s the first time anyone has ever asked to spend time with their disabled child or wanted to spend time with them,” Maria said.
Many volunteers use their vacation time to volunteer at Family Retreat, and they pay to attend to help offset costs for the families.
“We are able to tell the families, not only are people choosing to be here, they are using their vacation time, and they are paying their way to be here with you,” Maria said. “For many of the families, it is the first time someone has spent time with their disabled child that they have not had to pay for.”
The Joni & Friends Family Retreat offers typical summer camp activities, including theater, arts and crafts, biking on adaptive bicycles, and using an adaptive climbing wall. Campers are accompanied by a volunteer buddy for the entire day, freeing parents to attend support groups, workshops, and leisure activities, including kayaking on Otter Lake.
Walking around Family Retreat, I saw families full of joy. Campers and their buddies were on the basketball court, getting ready to go bicycling, heading into arts and crafts, or putting on skits in the lakeside pavilion building.
“Most of our campers are in their 20s, 30s, 40s, and they come with their families. The goal is rest and encouragement for the entire family,” Maria said.
Maria said the Family Retreat has a waiting list every year.
“We could probably fill another whole week of retreat, but we have to make sure we have enough volunteers. At the end of the day, we could fill 52 weeks a year with Family Retreat. The CDC estimates that one in three households are somehow impacted by disability,” Maria told me. “We will never be able to support that number of families, which is why our larger mission is to work with local churches on how to create lasting connections and in our family’s own communities.”
Joni & Friends does not turn any families away from Family Retreat weeks due to an inability to pay. Families needing assistance are asked to seek two sources of funding, and Joni & Friends will assist with the rest.
“In New Hampshire, the state provides respite funding for families dealing with disability, and a lot of churches will provide respite funds as well,” Maria said. “We have churches who pay 50% for the families and the volunteers, because they want their families to know they care, and that they are valued. Families with disabilities are always looking for how they can be part of the community.”
Karen, a volunteer in the arts and crafts classroom, told me that her family had been introduced to the Family Retreat through their church because her grandson, Andrew, had cerebral palsy.
“We saw how the family was supported when they came to the camp, and they got the support and encouragement they needed, as well as Christian teachings,” Karen said.
In 2014, Karen volunteered for Family Retreat for the first time as her grandson’s one-on-one volunteer.
“I am so grateful I did that, because it was the last time my grandson was able to come,” Karen said.
Karen’s grandson, Andrew, died in January 2014, at the age of 10.
“I had just registered to come back to volunteer at the camp two days before Andrew passed, and I said, I’m still going to go,” Karen said.
Karen’s entire family now volunteers at Family Retreat to help other families and to honor the memory of Andrew. Her husband drives the golf cart around camp, her nephew has been a lifeguard, and her daughter and two granddaughters, Andrew’s sister and cousin, also volunteer.
“My husband says to people the first time they come, ‘You’re going to get the Joni bug, and you’re going to want to come back,'” Karen said.
Maria said she first volunteered to Joni & Friends after her mom “guilted her into it.”
“I wasn’t sure what I wanted to do after college, and my mom wanted me to do good work for God. So then I came here, and I came here and saw people who the world said should have no hope or joy, and they had more joy than anyone I had ever seen in my life,” Maria told me. “It transformed my life. I was in software sales at the time, and I never imagined I would do anything like this.”
Maria’s own family will also have three generations volunteering at the camp in August.
“For so many of our volunteers, coming here has had such an impact on their life. They decide to become educators, or they become an OT or a PT, they take a different direction in their life,” Maria said.
The August camp also offers an opportunity for siblings of children with disabilities to meet other siblings of people with disabilities.
“For many of these children, it is the first opportunity to meet another sibling, to meet another person who understands. When they come here, they don’t have to worry about people staring at them or looking at them weird. We program special activities for the siblings as well,” Maria said. “Many of those siblings come back and volunteer; they want to give back and help others the way they were helped.”
“It’s just a joy to get to do what I do; it’s not about pity or being sad; I’ve been transformed by having friendships with disabled people,” Maria said. “I always ask our volunteers, who is going to be more blessed this week? And they always say, ‘It’s us.”
Joni & Friends relies on donations to support Family Retreats at the Barbara C. Harris Center in Greenfield and at locations across the country. For more information, go to joniandfriends.org.
Editor’s note: The Barbara C. Harris Camp and Conference Center in Greenfield, which is owned by the Episcopal Diocese of Massachusetts, was named for The Right Reverend Barbara C. Harris, the first woman ordained as a bishop in the Anglican communion. The “BCH” is frequently confused with the Harris Center for Conservation Education in Hancock, which was named for founder Eleanor Briggs’ cat.