Patti Hays, CEO

From the CEO: A Community that Celebrates People as They Are

My grandmother was born in 1891. When she went to the small Ohio schoolhouse her teacher observed her pick up the pencil with her left hand.  Each day thereafter her left hand was tied behind her back and she was forced to write with her right hand. Those who were left-handed were believed to be unlucky, dishonest, and even stupid. My grandmother was different and that was unacceptable.

How far we have come. Or have we? Now as in 1897, we all have confirmation bias. We search for and favor those like ourselves. Bypassing critical conscious thought, we are attracted to those who are similar. This is a field of expanding study with many corollaries but in that school in 1897, the girl who was left-handed was the one who was different and for that there was an attempt to correct her defect.

Ask anyone who is left-handed and they will tell you that they have had a lifetime of challenges. The world is built for the 90% of us who are right-handed. Scissors, desks, guitars, and even a computer mouse are all created for the right-hand dominant person. In my years of hiring, I am drawn to the lefties. I have found them to be more creative and better problem solvers because they have had to find new ways of doing things all their lives.

Overcoming confirmation bias is a continual process. It is only with repeated consistent and positive exposure to a diverse population that we can override those unconscious actions. It is more than just inviting everyone to the party. It is assuring that everyone feels respected and valued. That is the difference between diversity and inclusion.

The issues we deal with as a society today are not as simple as left or right handedness. Diversity today is different cultures, abilities, religions, sexual orientation, races, genders, and more. For some of us it is about us. For all of us it is around us.

Churchill said “The world, nature, human beings, do not move like machines. The edges are never clear-cut, but always frayed. Nature never draws a line without smudging it.” Are you the one who sees “different” as needing to be changed or ignored? Can you open yourself to greater exposure to that which is different with the goal of celebrating people as they are?

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

Social Distancing

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.

Staying Connected

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.

Staying Calm

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.

COVID-19 with medical icons surrounding it

From the CEO: COVID-19 Takeaway

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.

AWS Foundation provides EAP services for grantees through Crosswinds Grant

The links for the sites mentioned in this news release didn’t get included in the PDF, so we have placed them below:

Crosswinds Counseling Information

AWS Foundation COVID-19 Response

Foellinger Foundation COVID-19 Response

News Release - AWS Foundation provides EAP services for grantees through Crosswinds Grant
AWS Logo

From the CEO: Judgement

In talking with someone recently they inquired about how I could help their friend who was waiting for approval for “Disability” for a medical problem. The same day I learned of a child who would be born with Down Syndrome. Each would use the word “disability” in their lifetime, but the paths would be very different.

AWS Foundation works with the community to make a more accessible Northeast Indiana for everyone. When we do this then anyone with a disability has the potential to benefit. The word “disability” is used often and means many things to many people. While both the friend with the leg amputation and the child with Down Syndrome are seen as having a disability, how they are perceived and judged in a community are very different.

I, too often, hear generalizations about those with disabilities including:

  • “I feel sorry for the disabled…of course we should help them”
  • “The disabled have the ability to work…cut their benefits and then they will have an incentive to get a job”
  • “People should have to qualify for disability every year”
  • “Most people with handicapped parking are just lazy”

The intent of this brief column is not to provide a primer on waivers or differentiate Social Security, Supplemental Security Income (SSI), from Social Security Disability Insurance (SSDI) rather it is to encourage each of you to stop and think before speaking or judging. Many disabilities are invisible. Disability can, and likely will, come at any time in our life. Some are at birth and some come later in life after years of crippling work that caused the disability. Some disabilities are temporary, and some are life-long, but every person, regardless of their abilities, deserve to be part of our community without judgement.

  • The person parking in the blue parking space may have limited strength or they may have a passenger you did not see.
  • The child you see screaming at the store may not be the result of a parent who doesn’t know how to manage a temper tantrum. Perhaps the child has autism and the store causes sensory overload, but parent needed groceries with no childcare options available.
  • The family down the street may have had multiple failed attempts with jobs or services for their child. Staying at home and getting regular monthly checks is a consistent income source that provides their only known secure and safe environment for their child.

March is Disability Awareness Month. I would ask you to do me a favor. Acknowledge that each of us has differing abilities rather than disabilities. Consider the thought that you may not know the challenges. I would ask you to stop before you jump to judgement. Financial assistance from the government is not a windfall but a safety net. I would ask you to search for a way to make your neighborhood, your church, your school, your workplace, your community just a little more welcoming, just a little more inclusive and just a little more accepting of everyone.