Patti Hays, CEO

From the CEO: Power of Words

One of my oft repeated quotes is from Maya Angelou:

“Do the best you can until you know better. Then when you know better, do better”

July 26th will mark the 30th anniversary of the Americans with Disabilities Act, a transformational law that continues to protect those with disabilities from discrimination. After 30 years, many of us know better and are trying to do better and still many fall short with their words and thoughts.

What is the power of a word? That old “sticks and stones adage” is wrong…words can harm. While the tongue may have no bones, there is little doubt that its actions can strike the sharpest blows.

It is hard to believe the words used as descriptors in previous generations we would categorize today as derisive. Below are the words used to categorize levels of abilities just 100 years ago.

Idiots—Those so defective that the mental development never exceeds that of a normal child of about two years.
Imbeciles—Those whose development is higher than that of an idiot, but whose intelligence does not exceed that of a normal child of about seven years.
Morons—Those whose mental development is above that of an imbecile, but does not exceed that of a normal child of about twelve years.
— Edmund Burke Huey, Backward and Feeble-Minded Children, 1912

Huey was a recognized 20th century psychologist, but use of these words today would guarantee labeling him as a bully.

Some buildings remain in use today of the Fort Wayne Asylum (later School) for Feeble Minded Children. When the original 1889 school on State Street was demolished in 1983 a single small pillar of the entrance was preserved. Today it stands to remind us of its existence and is marked with a plaque referencing a once “place to learn to be productive citizens”.

Typical of the language of 1983, the students of the school were referenced as “mentally retarded children and adults” on that same plaque. In the mid-twentieth century the words “mentally retarded” with categories of mild, moderate and profound, were created to replace those used by Huey above. It wasn’t until October of 2010 that Congress passed Rosa’s Law. Rosa was an 8-year-old Maryland girl with Down Syndrome who was bullied and taunted by the “R” word.

With Rosa’s law came the requirement that person first language and the more respectful “intellectual disabilities” be used by all federal agencies.

Thanks to Rosa and many others, today we know better on the power of words. AWS Foundation asks you to join us to erase those two outdated words on Monday July 27th at 10am. The bronze plaque will be moved from that brick column to become part of the collection of the Fort Wayne History Center. A similar plaque will take its place but will instead reference the previous home for “children and adults with intellectual and developmental disabilities”

“Words are the clothes thoughts wear.” –  Samuel Beckett

Patti Hays, CEO

From the CEO: Christina’s World

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.

Image of Andrew Wyeth's painting, Christina's World. It features a woman crawling in a field toward a farmhouse on a hill.

Christina’s World by Andrew Wyeth (1948)

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.

From the CEO: Inclusion in the Arts

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”