A “Dog and Pony” is Born

Shelly came down to my office one chilly January afternoon after work to discuss her involvement with a No R Word presentation that was brewing in the creative hopper as planning began for the 2013 Spread the Word to End the R Word campaign.  This meeting would become the first of many over the next three months as we hammered out our plan to educate elementary students about not using the R word in a mean or joking way.

My interactions with Shelly up until this point had been mostly in passing so I was excited to actually sit down with her and really get to know her.  Shelly was wonderfully open, and touching as she shared very personal life experiences with cerebral palsy, heartache, fears and anxieties, as well as her goals in making a difference in our community.  We laughed a lot, and she made me feel comfortable to ask even more questions from the point of view of an elementary student to see how she’d respond to unfiltered, even awkwardly asked questions youngsters can ask.  I learned a lot about Shelly in this hour-long conversation, and from it, our presentation was easily born.

Together, Shelly and I agreed that while she needed to share her personal story of life with cerebral palsy, we needed to help the young students understand what cerebral palsy (CP) was, why it happens, and what it looks like.  Because Shelly had no previous speaking experience before groups, I decided to create a scripted outline for our presentation that would serve as our starting point.  Most of the content within ended up being Shelly’s very own words from our conversation.  I learned when and how she was diagnosed with cerebral palsy, and what living life with cerebral palsy meant, what she could and couldn’t do, and how she managed that.  I learned about all the things she liked and didn’t like, such as TV shows, foods, UK, sports, etc. I learned more about how CP affected her physically and what that meant to her and her abilities.  I learned that she preferred people ask her about her disabilities than make assumptions about what she can and can’t do; and finally, I learned how she felt about the R words and being called a “retard”, and what she thought about people who use them, jokingly or not.  Everything we discussed became a part of our presentation, added into the mix a few opportunities to interact directly with the children so they may connect with her, and small bites of information that help them understand cerebral palsy, how it happens, and what is happening when they see people with excessive oral secretions or heads drooping. 

Together we looked at the first draft, and Shelly really liked it, recognizing her own voice within it.  Over several weeks of meeting two, three and four times a week, Shelly and I read the presentation outline aloud dozens of times and then some, an exercise that allowed us to make tweaks, reword some things, and fine-tune it to where both she and I were comfortable with the words flowing from our mouths.  Shelly brought simplicity to the CP explanations, and further found her voice through edit suggestions of her part.  With some encouragement, Shelly began to take co-ownership of this presentation, and full ownership of her message she wanted to share.

We discussed “memorizing” the half-hour presentation, so that we could present it without needing to read from our outline.  Shelly physically wasn’t able to hold the outline, so she understood the importance of knowing the presentation cold.  I held myself to memorizing it, but reassured her I’d have the outline in hand so if she got in a memory pinch, I’d help bail her out; but Shelly was fully committed to learning her part, and knowing it better than me!  There were practice sessions in which I struggled with my part and she nailed it, which became very important in boosting Shelly’s confidence in this process.

In the Next Blog Entry:  Show Time! - "Shelly admitted to being nervous because she was unsure about the school environment, how the kids would take to her, and how they’d respond to her message. . . . nervous or not, Shelly hit the presentation out of the ballpark!"

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“The educated do not share a common body of information, but a common state of mind.” ~Mason Cooley
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Blog content is copyrighted property of Wendell Foster’s Campus for Development Disabilities and Carolyn Smith Ferber and/or other blog authors). Content may be used, duplicated or reprinted only with the expressed authorization of the Wendell Foster’s Campus. Permission for use, duplication or reprints may be made to wfcampus.org@gmail.com.

The Female Dynamic Duo

Preparations for the 2013 Spread the Word to End the R Word campaign were well underway in late fall 2012.  In planning for the campaign, I wanted to find a way to reach more elementary schools, in which we really didn’t have a presence.  We offered an hour-long power point presentation used in the middle schools for 6^th – 8^th graders.  One Wendell Foster’s Campus (WFC) community member was already going into the elementary schools to read a couple of storybooks, usually to Kindergartners and 1st graders, using her communication device.  I wanted a similar presence in the elementary schools with the No R Word campaign.

Shelly’s consistent offers to help with whatever we had going on in the Marketing & Development department jumped to the front of my brain as I pondered this challenge.  The idea of involving someone from our Campus in a shorter classroom presentation came to me, inspired by the dynamic Handicap This! duo of Mike Berkson and Tim Wambaugh who recently came to Owensboro to do a show.  I was unsure about a number of things, including whether Shelly would feel comfortable talking before a group of people AND whether Shelly even liked kids or not!  To find out, I struck up a conversation with her one day while she sat at the receptionist’s desk asking her about whether children came up to her with questions about her wheelchair or her disability, and how she felt about it.  Her enthusiastic answers reassured me that Shelly was the right gal for the job to help us spread the word in the elementary schools.  She acknowledged and respected children’s curiosities, pointing out she didn’t mind answering their questions.  She said she liked children, and that she’d rather they ask her questions than stare at her and wonder.  I left the conversation feeling we (WFC and its Spread the Word Campaign) were on the verge of something huge and exciting!

After taking some time to discuss my idea with my supervisor and the Supports for Community Living folks who would be actively involved in supporting Shelly in this endeavor through transportation, I approached Shelly with the idea of helping me with a No R Word program for elementary children.  To my pleasured surprise, Shelly excitedly latched onto the idea, and we agreed to get together after the first of the year and talk about what our “dog and pony show” would look like.

It would’ve been very easy for me to decide everything – what we say, how we say it, what we do – in this new No R Word presentation, and it was very tempting!  But, it wouldn’t have been person-centered.  As an organization that is challenging itself and its staff to be more person-centered, I had to temper my “creative” self to ensure this was truly a JOINT project with Shelly.  After further contemplation, I realized that this task wasn’t just about creating a presentation to do in the schools, it was giving Shelly an opportunity to have her voice; and more importantly, to be a voice for all of those on our Campus, and within our community who can’t speak up for themselves.

In January Shelly and I sat down and just talked. What about? Simply put, Shelly.  I wanted to know why she agreed to take on this gig, what excited her about it, what her apprehensions were.  I wanted to know who Shelly was, get to know her life story, what made her tick.  More importantly, I wanted to know what was important to Shelly that people understand about her, others with disabilities, and her feelings about the R word.

Out of this meeting, our No R Word presentation was born!

In the Next Blog Entry:  A “Dog and Pony” is Born - "Shelly brought simplicity to the CP explanations, and further found her voice through edit suggestions of her part.  With some encouragement, Shelly began to take co-ownership of this presentation, and full ownership of her message she wanted to share."

We want to hear from you! Please share your responses and comments by clicking below on “Comment” – you may post them anonymously or using your gmail.com profile name.

“The educated do not share a common body of information, but a common state of mind.” ~Mason Cooley
Please share our blog with others via Facebook, Twitter, or email! Follow our blog! Click on “Join our Site” below.

Blog content is copyrighted property of Wendell Foster’s Campus for Development Disabilities and Carolyn Smith Ferber and/or other blog authors). Content may be used, duplicated or reprinted only with the expressed authorization of the Wendell Foster’s Campus. Permission for use, duplication or reprints may be made to wfcampus.org@gmail.com.

Shelly's Long and Winding Road

Meet Shelly.  She arrived at Wendell Foster’s Campus (WFC) in 2010 after traveling a long and winding road in her 47-year-old life.  Born in neighboring Hancock County, doctors diagnosed Shelly with cerebral palsy at 6 months old.  Shelly reports that her mom treated her no different than she treated her brothers and sisters.  She was homeschooled for the first several years before getting her first wheelchair at the age of twelve.  Then, with some assistance, usually from other classmates, she went to school with kids her own age, graduating with her class. 

Shelly prides herself on being “like everyone else,” having been married and divorced.  After her divorce, she lived in several nursing facilities.  Shelly says she was “the youngest person there,” and there wasn’t anyone with whom she could relate to or socialize.  All facilities met her needs but offered Shelly few opportunities to get out and be an active member within her community.  Shelly didn’t get to go out and do things she enjoyed, which left her feeling unhappy, bored, and unfulfilled.

In time, she arrived at WFC, moving into the Supports forCommunity Living (SCL) housing, a perfect fit for this very bright and active woman.  Today, she lives an independent life, including working part-time at Hugh Sandefur Industries at its Owensboro location.  Because of the severity of her cerebral palsy, Shelly needs assistance with most of the everyday activities you and I take for granted – like getting in and out of bed, brushing teeth, getting dressed and undressed, and eating – which she receives from a Direct Support Professional (DSP); but once in her electric wheelchair, Shelly is on the go!  Like many of us, Shelly has activities and hobbies she enjoys, such as shopping, watching her favorite TV shows and going to community events.  She also runs household errands on her days off, and usually finds something fun to do in her spare time.

Yet, Shelly wanted more.  She looked for a way to contribute to her community and to Wendell Foster’s Campus, in addition to working three days a week.  She joined the WFC’s Residential Government that meets quarterly to give residents a voice about anything related to their Campus community, i.e. wheelchair crossing safety, activities, policies, etc.   She also joined WFC board’s Human Rights Committee that meets monthly.  She even spends her work lunch breaks helping at the front receptionist’s desk greeting Campus visitors.  Yet, none of these activities got Shelly off Campus or kept her actively involved.

Shelly would often ask if we in the Marketing & Development Department needed any help with any projects.  As I began planning the 2013 Spread the Word Campaign in the fall of 2012, I remembered Shelly’s offers and the wheels started turning on how to integrate Shelly into the No R Word program.

Before long, Shelly would soon be adding a new item to her personal resume:  Volunteer Campus Advocate.

In the Next Blog Entry:  The Female Dynamic Duo -  "To my pleasured surprise, Shelly excitedly latched onto the idea, and we agreed to get together after the first of the year and talk about what our “dog and pony show” would look like."

We want to hear from you! Please share your responses and comments by clicking below on “Comment” – you may post them anonymously or using your gmail.com profile name.

“The educated do not share a common body of information, but a common state of mind.” ~Mason Cooley

Please share our blog with others via Facebook, Twitter, or email! Follow our blog! Click on “Join our Site” below.

Blog content is copyrighted property of Wendell Foster’s Campus for Development Disabilities and Carolyn Smith Ferber (and/or other blog authors). Content may be used, duplicated or reprinted only with the expressed authorization of the Wendell Foster’s Campus. Permission for use, duplication or reprints may be made to wfcampus.org@gmail.com.