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
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.
Self-isolation looks different for everyone. Some of us live alone, some of us are working from home with a house full of kids, some even live with front line workers. Each situation comes with different challenges; loneliness, distractions, anxiety, etc. Due to their heightened risk of contracting COVID-19, those with disabilities may not get to see their loved ones. They may not understand why they cannot go to their regular activities or that their routines have been altered. This could result in increased behaviors, sadness, and sensory sensitivities. Here are some tips to handle some of these factors.
For those living in group homes, supported living homes, and long-term care facilities, losing visiting hours means losing connection to family and friends. Phone calls are great, but nothing can compare to in-person human interaction. While you can’t bypass stay at home and social distancing orders, you can do things that are extra-special to stay connected. Video calls are more accessible than ever through smart phone apps, Zoom, Google and even social media platforms. If you have the means, setup regular calls with family and friends; play games, share a virtual meal or just have a chat. For those wanting to go the extra mile, send letters and/or care packages. Hand-written letters show extra care and give the recipients something to continue to read for comfort.
Staying Engaged & Active
It’s easy to get in the habit of watching Netflix and laying on the couch when you can’t leave the house (and a little bit of that is fine). However, for our mental and physical health, it’s important to find ways to continue some of the activities we love in our “normal” lives. As day services, camps and schools are canceled, the daily activities those of all abilities enjoy are on hold. The great news is, many organizations are still offering some activities online! You can get a workout with Turnstone if you check out their Facebook page (they are also providing other wellness activities daily). Every Thursday you can enjoy at-home theatre workshops, including shadow puppets, on the Fort Wayne Youtheatre YouTube page. Check out these activities suggested by YMCA of Greater Fort Wayne Adaptive Services. More traditionally, you can play games, take walks and take up new (and old) hobbies.
Many feel more anxiety than usual right now, which is understandable. The best way to combat that is to stay informed. Everyone, even kids, hear about COVID-19 daily. Instead of shielding them from the information, help them learn the facts. Put the information into as simple of terms as necessary for their level of understanding. Ensure them that if everyone follows the rules, they will be safe. The Indiana Resource Center for Autism has great social narratives for situations from bathroom routines to schedule changes. Sometimes it’s also a good idea to just turn off the news.
We know that we missed many activities that those of all abilities can enjoy while social distancing. Let us know about them by tagging us on Facebook (@AWSFoundation) and we will share them as we can. Also know that there are resources to support your needs, Lutheran Social Services has an ongoing list. Follow the social distancing orders, wash your hands and find new ways to stay engaged.
For many of us, our world has a bit different focus right now than this time last month. For me, it is working from home with my dog and husband rather than in a new building with energetic groups coming in and out at every hour. The focus is less on the path towards an inclusive community where people of all abilities can thrive and more towards a healthier one where we all survive.
Pandemic is now a word we live with and not just a board game. I have an early memory related to a pandemic. It was of waiting in line, as a child, to get a sugar cube to avoid polio. Polio created a legitimate fear that, before 1955, children were kept inside on hot summer days, away from swimming pools and water, to avoid the spread of polio in the summer that could cripple the healthiest of young children as well as adults.
I also recall as a nurse in the early 1980’s envisioning a hospital filled with AIDS wards with the single purpose of providing end of life care to that disease just being identified. Little was known other than the fact that it was terminal and highly contagious.
I have experienced illnesses that are now extinguished, or almost. Pictures of my siblings and me with chickenpox and mumps are part of the family slide show.
Over the centuries we have seen not only polio and AIDS pandemics but also Spanish flu and yellow fever. We have seen tuberculosis and cholera outbreaks that have killed more than the COVID-19 deaths of the last four months. With each we have witnessed significant social change accompanying these major health crises.
With the major cholera outbreaks of the 19th century we saw home bathroom designs transformed to include sinks with running water.
With the fears of the AIDS epidemic we have seen greater acceptance of the use of condoms.
I wonder what we will take away from this COVID-19 pandemic?
Will handshakes and hugs be the greetings of yesterday? Will our families take on saving patterns more like those of the depression era Greatest Generation so they will be prepared for the next occurrence? Will we see less international travel? Will masks that cover the smile of a stranger be routine? Will we relinquish some freedoms for the greater health of the community? Who knows?
I do know that AWS Foundation will have to work even harder to advocate for the rights of people of all abilities. This pandemic has initiated discussions around value of life when there are limited resources. This pandemic has moved us as a community from almost full employment to double digit unemployment and climbing. Communication is happening behind masks and on visual platforms which will exclude too many with sensory challenges. Public transportation, already not as robust as needed, is even less frequent as people avoid shared spaces.
AWS Foundation has been proud to provide Emergency Grants to more than two dozen nonprofit groups across northeast Indiana for the last four weeks. All we know is that there is more unknown before us. But, as with the epidemics of the past, we are part of a world that moves from identification to treatment and, almost always, to primary prevention. I am confident that is our path with COVID-19. In the meantime, our mission is the same. We are part of an inclusive community where people of all abilities have a path to live as independently as possible.
The links for the sites mentioned in this news release didn’t get included in the PDF, so we have placed them below:News Release - AWS Foundation provides EAP services for grantees through Crosswinds Grant