Board Member Feature: Susan Trent, Chair

Susan TrentI serve as the AWS Foundation Chair because some experiences shape a person’s life.

For me, it was a gym class full of 5th grade square dancers in 1980. Square dancing posed two equal discomforts: 1) boys; and 2) the order of selection. This was especially true for a quiet bookworm who sported a hairstyle consisting mostly of tangles and two large barrettes, who wore Toughskins rather than Jordache jeans and whose Jelly shoes were devoid of beaded, friendship pins. Last to be picked – guaranteed exclusion – and a spot on the sideline. It was there, against that wall, that I would inevitably watch my classmates “Promenade” and “Do Si Do” for the hour-long gym class.

In a scene reminiscent of a John Hughes film, Chip Baxter (the most popular, athletic, smart, attractive boy in school) stood at one end of the gym – and slowly and very intentionally pointed his index finger – and through the sheer magnetic power of his grammar school social status – silently commanded the adolescent foursome pairs to split in two – not unlike Moses with his staff causing the Red Sea to part for the people of Israel.  It was at the other end of that gym that I sat with my back against the wall. Above the din of these Swatch Watch-wearing preteens, Chip pointed at me and roared: “I want to dance with you!”

To this day, I struggle to fully describe the initial wonderment and enormity of being really seen for the first time by every kid in that gym – and my great joy at being included in the dance. Those jubilant feelings were quickly dashed when Chip qualified his public pronouncement with “… because you are the only girl I haven’t danced with.” Holding back tears, I sat down and sat silent – resuming my place on the wall.

For the Chip’s in this community – our community and business leaders – your informed and thoughtful words, decisions and actions genuinely matter to removing needless barriers and creating significant and varied opportunities benefitting and enriching not only those with disabilities but the community as a whole. For the person on the wall – the disabled individual who may feel marginalized – they can tell you better than anyone how very empowering it is to be seen, heard and valued, to be able to contribute to and participate in the life of this community, to live as independently as possible and to reach their potential.

AWS Foundation, through its grants to amazing nonprofits in this community, through the FINDER program, and through strategic partnership with our affiliated organizations, namely, Benchmark Human Services, the AWRC, and AWS Holdings – educates and empowers – helping to take diversity from a meager, static measure in time – to inclusion as an achievable, flourishing investment in everybody’s future.

Shall we dance?

Illustration of a group of people with various disabilities in a workplace setting. The words say "person-first or identity first?"

I Before E Except After C….

I before E except after C and when sounded as A such as neighbor and weigh.

I so appreciate having these kinds of creative mnemonics to help me learn something new. And just when I think I understand it, along comes “caffeine,” “seize,” and “policies.

How often do we hear people struggle to find the correct word to use when talking about individuals within the service realm of AWS Foundation? It can be awkward for some as they search their memories for a proper reference, often knowing to avoid the “R word,” but uncertain if “low IQ,” “normal,” or “mentally challenged” are acceptable. (They are NOT)

Then along came PERSON FIRST language and everything was clear.  We had our reminder on what to say. Woman with Down syndrome. Persons with low vision. Man with a spinal cord injury. The intent is to first recognize the person, not the disability.

Just like the words “caffeine” and “seize,” there are exceptions to this rule.

Increasingly I am finding self-advocates pushing back against person first language. Those in the Deaf community identify themselves as “deaf,” not person with hearing loss or individual who is deaf. Shayla Mass has multiple disabilities including, Ehlers-Danlos syndrome, and she is quick to say, “I am actually disabled…don’t be afraid to say the word disabled.” More and more people are defining themselves as autistic, acknowledging that it is part of their identity.

It starts getting weird (another word that doesn’t follow the above spelling rule) when we see people struggle to find the right words. Is it “differently-abled” or “varying abilities?” What about “special needs?” (Some self-advocates prefer you don’t use these either)

Let’s acknowledge that we are trying to be respectful, AND honor an individual’s preference. I learned early in nursing training to never refer to the “heart attack in room 1” and to never reference a patient with a stroke “their good side” or “bad side.”

If possible, ASK the person’s preference. Sometimes they can give you a clue when you hear how they refer to themselves or to others. If you make a mistake, apologize and pledge to try to do better. Hopefully, the correction to your language was shared with an attempt at compassion and grace. But above all else, don’t let your uncertainty of language be the reason you aren’t joining the conversation.

Here is my attempt for a catchy reminder:

Acknowledge the person and then the condition
When an error occurs, then offer contrition

When word preference is shared and another requested
Take it to heart and do as suggested

Respect is preferred, so offer humility
If ever in doubt, ASK about ability

AWS Foundation Awards $4,665,087 to Five Disability Service Providers

AWS Foundation awards Vantage Grants totaling $4,665,087 to five select nonprofit disability service providers serving Northeast Indiana: Cardinal Services, Carey Services, Easterseals Arc of Northeast Indiana, Pathfinder Services, and Turnstone. In January, Vantage Grant participants initially received $75,000 and six months to identify and explore significant barriers and find a path toward solutions that would transform how they serve the disability community. After analyzing their findings and developing a plan to meet those needs, each organization was extended an invitation from AWS Foundation to apply for up to $1,000,000 of additional funding to implement a three-to-five-year plan of action. $4,665,087 was awarded based on presentation findings.

“These five organizations have worked hard over the past six months to tackle a challenge that has repeatedly been beyond their reach,” says Patti Hays, AWS Foundation CEO. “The Vantage Grant will allow them to provide services or processes in their organizations that might have otherwise been years away from their existing resources.” Ms. Hays goes on to say that direct nonprofit service providers rarely have time, personnel, or budgets to look beyond their daily operational demands.

AWS Foundation established the Vantage Grant to offer nonprofits by invitation, the opportunity to take a reflective position intended to give them a strategic advantage and perspective on their operations. Six additional nonprofit organizations have been chosen to participate in a second round of evaluations to begin later this fall.

Young woman in blue shirt posing with her arm around a boy with a disability in a red shirt. They are at a playground.

From the CEO: Collective Effervescence

In May, I attended an outdoor gathering with my husband’s partners and co-workers when I fully realized how much I had missed the joy that comes with gathering with friends. We have been cautious during the pandemic and limited face-to-face meetings with anyone. Masks, social distancing, limited group sizes, and short times together were the routine for all but our inner circle. Enough people had been vaccinated in that May gathering that masks were shed in that large, ventilated room.

By the end of the evening, I was energized. I had talked with people with whom I had only seen via social media for more than a year. There was a back-and-forth exchange of stories and updates that filled my heart. I did not fully realize what had been missed since the spring of 2020.

I learned earlier this month the name of that feeling: Collective Effervescence. In his New York Times article, author Adam Grant shared that term, first coined by sociologist Emile Durkheim, as “the sense of energy and harmony people feel when they come together in a group around a shared purpose.”  He goes on to write that even introverts are energized with social interaction. Emotions, as with COVID 19, are contagious.

We laugh more when we are in a group than when we are alone. In a crowd, I sing louder with my favorite Jimmy Buffet song than when in the car alone.  My cheers with a homerun are always more exuberant with the hometown crowd. Even yoga practice in a group brings greater peace and inner calm than the one done in private.

That shared exuberance is the desired outcome of the grants from AWS Foundation when we fund the arts, parks and all areas of social enrichment. Now, more than ever, we need to ensure that those opportunities for collective effervescence are available to everyone. Since March of 2020, we have all lost that shared purpose. Church services, book clubs, and family gatherings can all happen via zoom, but they lack the shared energy and harmony.

Every day more and more of us are vaccinated. There are many days of warm weather left in the summer. Parks give us room to stretch out and laugh, sing and dance in a group. Reach out to your neighbors, FB friends, and all those who you haven’t seen in the past year. Invite them over for a dose of collective effervescence.

From the CEO: Why I Work at AWSF

In my years with AWS Foundation, first as a board member and then as CEO, I am often asked why I am so involved with our mission. I have never been directly responsible for the care of a family member with an enduring disability. I have cared for patients with disabilities, but 8-hour shifts in a hospital with access to Hoyer lifts and needed equipment is not the same.

I  recall my mother telling stories of her oldest brother spending long months in the hospital with severe Juvenile Rheumatoid Arthritis as a child. Her only sister saw two of her four children die as young adults with a form of muscular dystrophy. My cousin had Legg-Perthes and wore a leg brace that allowed him to stand without damaging the head of his femur….but none of these had a significant direct impact on my day-to-day activities.

My final answer usually includes a reference to growing up in a middle-class household with a clear expectation of giving back. I remember days of hearing the rhythmic sounds of a typewriter in the living room as my mother copied books to a larger font for the visually impaired, one page at a time. I would canvas our neighborhood in Western Pennsylvania to collect enough dimes to fill a card for The March of Dimes campaign with my sisters. I remember the card with a picture of a child in leg braces and the excitement as I filled each slot as the day progressed. At Halloween, the collection was for UNICEF, and the neighbors gave all the same. March of Dimes ad

One of the highlights of the summer vacation was getting the requested packet from the Muscular Dystrophy Association (MDA) for the backyard carnival. For those who did not grow up in the 60s, this was part of the annual Jerry Lewis Day MDA telethon. Before the big Labor Day event, kids were encouraged to organize backyard carnivals for other kids to collect the price of a ticket and the fees from the games. Homemade costumes, lemonade stands, and games with prizes of recycled toys and trinkets would likely yield a bag of coins that would be delivered to a local collection spot.

None of this was seen as work or a mandated consequence for some selfish act. It was always just a part of who I was and who my family was. “To whom much is given, much is required.” (Luke 12:48). My family of six was blessed with health, and we were responsible for giving back to our community. Philanthropy is that desire to promote the welfare of others; to focus on quality of life and the public good.

I believe our three children have grown up with a similar sense of giving. One reads to children in local schools. One serves on a board of a nonprofit, and none can pass a red kettle or a Girl Scout selling cookies without reaching into their pocket. Each in their own way knows they are responsible for giving back.

I have realized that  I work with AWS Foundation because of that sense of responsibility and maybe even a little about the joy and pride of knowing the outcomes of those backyard summer carnivals.

Resilience by Joni Schmalzried

‘You can’t wait until life isn’t hard anymore before you decide to be happy.’ (Nightbirde)

 Wow. I heard that first thing one morning, had a good cry, then tried to get back to my work at hand.

Man with Down syndrome, wearing glasses, side hugging a woman wearing glasses while they smile at the camera.

Joni with her former student, Josh O’Neill.

Shortly after that (on the same day, in fact), I had the wonderful opportunity to spend time with one of my very first students from 1984 (he is no longer 5, and I am no longer 21). Later in the day, I spent time reflecting on both the quote and my student, as well as the hundreds who came after him.

This isn’t intended to be a ‘sappy’ piece for the newsletter and isn’t intended to portray people with disabilities as superheroes. I want to reflect on  resilience – falling off the horse time and time again but still getting back on and withstanding or recovering from difficult situations. I especially like the ELL (English Language Learners) definition of resilient…being able to return to an original shape after being pulled, stretched, bent, or pressed. During my career in the field of disability, I have encountered some of the most resilient people I have ever known.

Having a disability presents obstacles that many of us do not have to face – mentally, emotionally, educationally, socially, and physically. When I think about the students (and families) that I have known over the years, the barriers they sometimes faced seemed insurmountable. Jason who had Muscular Dystrophy and knew that his life span was limited. Sam, who had a brilliant mind, but no verbal language to share it with us. Jamal, who had a spinal cord injury at age 17 and had to learn to use a wheelchair, switches to communicate, and depend on others to support his daily need. The countless number of students who had both the desire and ability to work, with no one to hire them; the ability to live independently, but no safe and affordable housing to live in; the desire to get from point A to point B, but no way to get there. These were all individuals who embodied resilience – being bent and pushed but not losing shape in the long run.

What each of these students and families taught me, and should be a lesson to all of us, is that though having a disability can present adversity, can be painful and difficult at times, and can consume an inordinate amount of time – it is not the sum of a person. It does not pre-determine the entirety nor the outcome of a life.

For most of us, becoming resilient takes a lifetime. I know I am still working on it daily. For those born into barriers and challenges, resilience often becomes the fiber of their being, without having the luxury of ‘waiting until life isn’t hard anymore.’

Elon Musk standing on the Saturday Night Live set in an all black suit, smiling

From the CEO: Embracing Neurodivergence

I remember watching the first Saturday Night Live in college, and over the years, there have not been many episodes that I have missed.

Earlier this month, I watched as Elon Musk disclosed on SNL that he had been diagnosed with “Asperger’s.” Let us set aside the discussion regarding the validity of Asperger’s as a diagnosis. What should we make of this public act of disclosing a diagnosis of autism? Was it newsworthy because we heard it from this high-profile businessperson?

Simon Baron-Cohen, professor of Psychology at Cambridge University, Director of their Autism Research Center, and author of the book: Patterns Seekers: How Autism Drives Human Invention, recently spoke about the increasing incidence of the diagnosis of autism and the link between autism and the capacity for invention.

Cohen has done extensive research trying to better understand autism. Some of his findings include:

• Those who work in STEM have more autistic traits than those who don’t
• Those with an aptitude for recognizing systems are more likely to have autistic traits
• There is a genetic connection with both those with autism and those with systemizing ability
• He states that the gene for autism is driving invention

Thomas Edison was believed to have autism. He had an aggressive approach to learning. Edison had 100 plus patents to his name, and even as a child he, was experimenting. He read books in the order they were on the shelf. He was focused on patterns and was obsessed with Morse code (a system of patterns) and even named his children Dot and Dash. He isolated himself in his home. He was not good when dealing with people, but he had great attention to detail and a single-mindedness that resulted in many inventions.

What happens if we encourage autistic people to use their strengths and to feel valued? While autism may restrict an individual from joining the US military, one country has a specific unit of autistic soldiers. This ability for pattern recognition is used to detect potential terrorist activity in reviewing aerial photos. We need to embrace neurodiversity. We may find that by accepting differences, we empower a person to confidently “speak up” when a pattern that may result in a solution to a problem is identified. How many individuals are, like Musk, hesitant to publicly disclose a greater comfort with systems and patterns than with relationships with people?

Are we doing enough to encourage disclosure? How many people are living each day camouflaging their autistic traits? Camouflaging is the attempt to mask those behaviors that are consistent with, in this case, autism, with the desired outcome to pass as neurotypical. Whether in autism or any other “nonmainstream attribute,” this masking is physically and mentally exhausting to one’s wellbeing.

The rate of diagnosed autism is rising. As a region desiring to nurture and recruit STEM businesses and their employees, we need to anticipate more students with autism. There will likely be families where both parents in STEM fields have children with characteristics of autism. As research grows to understand autism and its genetic links, increased diagnosis follows.

There is a link between autism and the capacity for invention. The ability to recognize what neurotypical people may not see lends to a skill in problem-solving, discovering new approaches to familiar tasks, or showing people a different perspective on the world.

Albert Einstein was non-verbal until four years old. His difficulty with social interaction hampered his success in school. Sir Isaac Newton was often described as reclusive. He would become so obsessed when he worked that he would forget to eat.

Nikola Tesla, described as more brilliant than Edison, had an extreme sensitivity to lights and sounds and an obsession with the number three.

With her intense focus on climate change, Greta Thunberg takes on world leaders to act before it is too late.

Edison, Einstein, Newton, Tesla, Thunberg, and Musk all demonstrated autistic traits, including avoiding social contacts, obsessive tendencies, and varied sensory issues. But those autistic traits including the ability to intensely concentrate, visualize abstract concepts, and recognize patterns, resulted in life-changing inventions and approaches.

What are we squelching when we encourage the child to behave in a neurotypical fashion? What can we yield as a community if autistic traits are recognized, disclosed, and nurtured?

AWS Logo

AWS Foundation Announces $1,298,762 in Grants

Fort Wayne, IN ─ The AWS Foundation recently awarded $1,298,762 in grants to 22 non-profit organizations that benefit individuals with intellectual, developmental and physical disabilities in northeast Indiana. These organizations include:

 

Blue Star Recyclers: $30,000 for Midwest recycling operations creating jobs for individuals with disabilities.

Boys and Girls Club of Fort Wayne: $10,000 for sound reduction paneling and $135,706 for the Inclusion Coordinator position.

Camp Red Cedar:  $100,000 for operating support

Community Transportation Network: $200,000 for specialized transportation support.

Down Syndrome Association of Northeast Indiana: $20,000 for the iCan Bike program.

Early Childhood Alliance: $22,348 for early intervention services.

Easterseals Arc of Northeast Indiana: $50,000 in operating support.

Family Voices Indiana: $55,000 to support restructuring efforts.

Fort Wayne Ballet: $7,500 for one sensory friendly performance.

Greater Fort Wayne, Inc.: $165,200 for the disability employment initiative.

Huntington County Community Schools Corp.: $4,999 for the Chillville sensory room.

Judy A Morril Recreation Center: $8,258 for automatic door installation.

L.I.F.E. Adult Day Academy: $60,000 for operating support.

Little River Wetlands Project: $35,000 for the extension of accessible floating trails at Eagle Marsh.

Lutheran Social Services: $35,000 for LSSI Works.

Otis R Bowen Center: $10,000 for Silas Solutions software.

Super Shot, Inc.:  $12,751 Family exam room and sensory items.

The Lighthouse: $5,000 for training for staff to work with individuals with disabilities.

Turnstone: $200,000 in operating support.

Visually Impaired Preschool: $47,000 for early childhood intervention.

Wellspring Interfaith Social Services: $10,000 for the Older Adult Program.

YMCA of Greater Fort Wayne: $75,000 for adaptive services.

From the CEO: The Hill We Climb

February is Black History Month. On social media we have been posting in recognition of the actions of several inspiring African Americans in this country’s history of disability advocacy. In January, however, a new young voice was heard.

Even if you didn’t watch the presidential inauguration, I suspect you have heard about the breakout young poet, Amanda Gorman, who delivered the traditional inaugural poem. Many lines from the almost six-minute recitation entitled “The Hill We Climb” have been requoted.

The one I have seen most frequently is this:

“For there always is light,
If only we’re brave enough to see it
If only we’re brave enough to be it.”

When rereading her poem, a different line stood out for me. In referencing the desire to “form a union that is perfect,” she attempted to describe how we form that more perfect union that is referenced in the preamble to The Constitution. The line that stood out to me was:

“To compose a country committed to all cultures, colors, characters and conditions of man.”

In this line, she humanized the battle of the oppressed. She empowered those with the desire to make our country better for everyone. She encouraged us to “leave behind a country better than the one we were left with.” The vision and eloquence of this 22-year-old young woman reveal wisdom well beyond her years.

We were all encouraged to “lift our gazes not to what stands between us but what stands before us.”

That is what AWS Foundation strives to accomplish each day. We are tied together as a community. We know there are systemic inequities. Indiana continues to lag the national average in age to diagnosis for the child with a disability, and it is still more for the non-white Hoosier child. How can we help with the inequities in front of us? AWS Foundation desires to drive real change for individuals with enduring intellectual, developmental, and physical disabilities.

During February and the days that follow, I encourage you to look at what stands before you and make one life a little better. No act is too small. Now, more than ever is the time to reach out, albeit figuratively, and be a light to someone.

Black History Month