Seeing the news of Betsy Wyeth’s recent death prompted me to go back and view one of my favorite of her husband’s paintings, Christina’s World. On their first date, Betsy introduced her future husband, Andrew Wyeth, to a neighbor, Christina Olsen. This introduction would lead to a friendship between this emerging American artist and middle-aged woman that would last a lifetime.
Christina Olsen had a degenerative disorder that stopped her from walking. She refused to use a wheelchair and instead propelled herself forward with the strength of her arms dragging behind her lower body. In the now famous painting, she was shown in a field she often visited, adjacent to her home.
I have looked at this picture literally thousands of times and what I see with this recent inspection is an image of loneliness. It may be the current isolation we are all experiencing right now with our responsible sheltering in place, but I am suddenly struck by how very lonely and abandoned she appears in this painting.
I am reminded that the most severe punishment one can receive is that of solitary confinement for it is with that isolation that one can “break”. The lack of communication from others, the loss of the sense of time or even a disorienting confusion about the days of week can push the strongest of individuals over the edge.
After decades of a culture that allowed for physical segregation and emotional isolation from the rest of the community, many individuals with disabilities have experienced opportunities for greater integration. Just as we were seeing greater progress with employment opportunities and enhanced access to social elements of our communities, we must now comply with the directives to shelter in place.
COVID-19 has shown little greater threat to a population than to those in congregate settings; settings such as nursing homes, prisons and group homes. For an individual with a disability, co-morbid conditions add to the lethality of this virus, perhaps as much as five times that of the general population. At this time there are very limited options for many with disabilities to safely leave their residence.
During the May AWS Foundation Board Meeting, the directors recognized the efforts some in northeast Indiana who have worked to minimize that sense of isolation. You see, while many of us could work from home, hundreds of caregivers continued to report to work each and everyday to care for those who needed them and trusted they would be there.
For many who care for those in group homes or other settings, it was more than a job. Those caregivers willingly isolated themselves when they were not working to help ensure they were not increasing the risk of a shared exposure to the virus. Services were often provided and equipment purchased for which there would likely be no reimbursement. Through a divided grant of $550,000, AWS Foundation recognized the sacrifice and continued advocacy of those eleven nonprofit agencies.
In describing Christina’s World, Andrew Wyeth said, “The challenge to me was to do justice to her extraordinary conquest of a life which most people would consider hopeless,” he wrote. “If in some small way I have been able in paint to make the viewer sense that her world may be limited physically but by no means spiritually, then I have achieved what I set out to do.”
This isolation will not last forever. As I write this, we are seeing a cautious testing of lessening restrictions. There is still a vulnerability for many but I am optimistic that we will find our way back to the path towards a more inclusive community after this detour. I would ask you to consider the image of Christina’s World and challenge yourself to help us get back to that path of inclusion over isolation.
The first Broadway play I ever saw was in 1980, the Tony winning Children of a Lesser God with actress Marlee Matlin portraying a deaf janitor. I was mesmerized in the fluid dance-like sign language that was so much a part of the play. Matlin is the only deaf performer ever to have won an Academy Award when she later portrayed that same role of Sarah Norman in the movie of the same name.
Earlier this month we witnessed a first when Ali Stroker won a Tony for her role in Oklahoma. This time, instead of the choreography of American Sign Language (ASL), we saw the challenging dance performances that included this woman in a wheelchair. Who would have considered casting the enduring and coquettish Ado Annie with an actor in a wheelchair?
Patty Duke played Helen Keller in The Miracle Worker and received a Tony for her performance in 1962. She was recognized as a great actress in light that she was able to so convincingly portray a deaf and blind girl. At that time it was inconceivable to have had a woman with an actual disability on stage. Bradley Cooper portrayed John Merrick in The Elephant Man and Daniel Day Lewis was Christy Brown in My Left Foot. There are many other great roles of individuals with disabilities who are too often portrayed by able bodied actors.
The author of Oklahoma envisioned a character who was flirtatious and naive when Ado Annie’s role was written. These are not attributes restrictive of a person with a disability. In her acceptance speech Stroker said “There’s a wealth of great performers who identify with having a disability that deserve stage time…”
In Fort Wayne recently, Summit City Music Theatre made performances of You’re a Good Man Charlie Brown more welcoming when cast members were added who signed during the performance. This was not an interpreter standing off stage but were ensemble actors, often center stage, signing the entire production.
We make strides in recognizing all abilities when a deaf actress portrays a deaf character. But when actors with visible disabilities portray roles whose descriptors are silent regarding senses, height, mobility or other attributes, then we have a more open and fluid sense of community. CBS has recently pledged to work for authentic representation in entertainment casting to audition actors with disabilities and to cast and hire people with disabilities.
As a community we continue to work toward the vision of an inclusive arts community. Audiences are increasingly diverse. There is still opportunity to ensure that the stage is fully accessible to all. Previous casting types do not have to dictate future. How can we accept Ali Stroker’s charge to be sure that backstages are accessible? When we see individuals like ourselves in a role then we learn that role is available for us!
I can’t say “NO”
Maybe you’ve heard Eleanor Roosevelt’s philosophy: “Do one thing every day that scares you.”
It served as my mantra on more than one fear-filled occasion, because there’s a lot of wisdom packed into that one sentence. However, what Eleanor really said about fear was:
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face.
You are able to say to yourself, “I lived through this horror. I can take the next thing that comes along.”
The danger lies in refusing to face the fear, in not daring to come to grips with it. If you fail anywhere along the line it will take away your confidence. You must make yourself succeed every time. You must do the thing you think you cannot do.
This month, 90 people got the chance to do just that – face their fears and do the thing they thought they could not! The mission, should they choose to accept it, was to rappel down a 14-story building, Tom-Cruise-style….
It was all to raise money for a good cause – GiGi’s Playhouse! GiGi’s playhouse, for those who don’t know, provides free educational and therapeutic programs for individuals with Down syndrome.
And while GiGi’s received corporate sponsorships for the mission, NO ONE from several of the sponsoring employers was willing to take the risk and participate. So…when AWS Foundation was offered a spot, Eleanor’s words came to mind, and I accepted GiGi’s invitation.
Heights don’t bother me….falling, yes….but not heights. Roller coasters, high dives, bungee jumping are not in my purview of entertaining ideas, but rappelling is a controlled and safe descent. I am all about control. I thought I could do it.
When I woke the morning of the event, I heard thunder and rain falling. I will admit the thought that I had “dodged that bullet” occurred to me. By 9:00AM, however, the rain had stopped and people began to descend.
I suited up: a harness, grappling lines, walkie talkie, gloves and helmet. I readied for my instructions. Lightening and storms meant we were nearly two hours behind schedule. Again, I thought I might have received an 11th hour reprieve… However, while I waited anxiously, I heard story after story of excitement from those who’d already rappelled. I could feel the adrenaline. Finally, we got the all clear.
I can do this!
Cameron, a young man with Down syndrome went before me. He admired my Spider Man shirt. I admired his unwavering excitement. He was the first to volunteer in our group to control his own lines and release the safety locks. Bravely, he hoisted himself onto the wall of the room and showed us how it was done. He shared the trip with a mentor who recorded the experience with her GoPro. He got tired part way, he went too fast and his safety line locked, he radioed up for help and with encouragement finished the descent. We weren’t allowed to look over the edge until it was our turn but I heard everyone cheering as he safely placed his feet on the ground below.
If you want to see more, from the safety of the ground, check out our video below. This was a great fundraiser that also raised awareness of the great activities provided by Gigi’s, but there was much more to be gained. I retold my story over the next few days and posted the picture on Facebook as I stepped off the edge of that building. My take away was more than the pictures and bragging rights, however. I learned so much more in watching the young man go before me. His lesson for me applies to many other situations in life for those with disabilities who are trying to face a daunting challenge.
- Be Prepared. Practice in a safe space where mistakes can be identified and corrected by those who care about your success.
- Have a safety line. Even with the best practices, a back-up plan can help ensure a successful journey.
- Take a break when you need it. Catch your breath, ask for help, and keep at it.
- Share the journey. Any journey is better when shared.
- Be sure to celebrate. We all have challenges in life. Share in the successes of others and go ahead and brag so they can celebrate with yours.
I suspect years from now it won’t be my journey to the ground that will replay when I am faced with a challenge but rather the bravery of Cameron and how he exemplified the spirit of Eleanor’s words…
“Do one thing every day that scares you… even the thing you think you cannot do.” This is the routine for many of those with disabilities.
Fort Wayne, IN ─ The AWS Foundation recently awarded $504,708 in grants to 18 non-profit organizations that benefit individuals with intellectual, developmental and physical disabilities in Northeast Indiana. These organizations include:
Achieva Resources: $70,000 for the Guardianship Program.
Audiences Unlimited: $13,910 to pilot a Music Enrichment program at Life Adult Day Academy.
Carey Services: $13,250 matching grant for vehicle purchase and accessibility modifications.
Churubusco Elementary School: $12,500 for classroom sensory kits.
Coesse Elementary School: $10,000 for sensory room.
Community Transportation Network (CTN): $23,264 matching grant for two lift-equipped vehicles.
GiGi’s Playhouse: $27,500 for a career development program.
Huntington University: $35,000 for the ABLE program.
Joe’s Kids: $25,000 for operating support.
Magical Meadows: $15,000 for the therapeutic riding program.
Mental Health America: $30,000 for Kids on the Block; $75,000 for Volunteer Advocates for Seniors and Incapacitated Adults (VASIA) program.
Pathfinder Services: $12,500 for Creative Abundance program.
RSVP of Allen County: $25,000 for I CAN volunteer program.
Scherer Resources: $30,000 for vocational training and job placement program.
The League: $20,000 for Youth Services program.
Trine University: $36,000 for medical dispenser market research.
University of Saint Francis: $5,784 for Jesters’ North Campus Auditorium sound board.
Visiting Nurse: $25,000 for patient care and grief services.
Fort Wayne (August 10, 2017) – AWS Foundation, in celebration of their 10th Anniversary, will donate ten buddy benches to area schools to promote friendship for all people of all abilities. The buddy bench, combined with an education program, teaches children the importance of inclusion. Each bench displays an original design created by a local artist to honor four of the foundation’s founding board members: Ian Rolland, Ben Eisbart, Andy Brooks and Patti Hays.
“As we celebrate our 10th anniversary, it is important to recognize and honor the work done by several of the foundation’s founding board members as they retire from the board. With the community’s recent loss of Ian Rolland, this recognition seemed even more poignant,” says Tom O’Neill, AWS Foundation Board Chair. “Without their vision and leadership, AWS Foundation wouldn’t exist. They have helped thousands of people with disabilities in northeast Indiana.”
While it is common for any child to go through at least some period of social discomfort, studies show that children with intellectual and developmental disabilities tend to be less accepted by their peers, struggle more in social situations and experience feelings of isolation for extended periods. The buddy bench is a simple concept that has been adopted by educators around the world to support social acceptance.
“When a child feels lonely, they sit on the buddy bench to let others know they want someone to play with,” Patti Hays, CEO of AWS Foundation states. “Fellow students playing in the area see someone on the bench and know to ask them to play. It’s an easy way for kids to connect and make friends.”
Teachers spend countless hours in the classroom helping children improve academically. A buddy bench program helps educate children on the importance of acceptance, peer support and inclusion when they are at recess.