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Since 2003 WXXI and the Al Sigl Community of Agencies have worked together with the Herman and Margaret Schwartz Community to help break the ingrained stereotypes about individuals with intellectual and physical disabilities. The year-round project called MOVE TO INCLUDE, is designed to motivate individuals to take action and include more people with disabilities in the workplace, in schools, neighborhoods and in all aspects of society. Dialogue on Disability, a week-long spotlight initiative takes place every January, and is supported by the Fred L. Emerson Foundation with additional support from The Golisano Foundation.

Sharing Music, Joy, and Community with the Ukulele Support System

Student using the Ukulele Support System
Student using the Ukulele Support System

Deb Guarneiri is a music teacher on a mission: help people with upper arm disabilities to play the ukulele. 

Playing the ukulele brought her back to music in a difficult time – and she now is inspired to share that source of joy with others.

"When our daughter-in-law passed away in 2014, it was a time of huge sadness.  She was a very talented orchestral musician, who studied at Eastman, and losing her made it difficult for me to go to the very thing that gave me joy:  classical piano music and orchestral performances. 

Ukulele was the little light that grew warmer and warmer and brighter and blossomed into the joy in my life again.  So every child I help, I help in her honor.  She always had a huge smile for each and every person she met and her joy of life was an example for everyone she came in contact with."

Deborah Guarneiri, Ukulele Support System Designer and Developer
Deborah Guarneiri, Ukulele Support System Designer and Developer

Deb's work on what developed into The Ukulele Support System started with a request from one of her former students, who was starting a ukulele program in the elementary school where she had just started teaching.  This new teacher found out that she would be working with a disabled student with bi-lateral limb loss.

Deb reached out to many players, teachers, and therapists for help. No one had any idea how this child could play with her class. As she recalls,

“Hence, the beginning of thinking outside the box. I developed a system with a cradle for the ukulele and arm splints with articulated styluses. Found the Troubadour Company sold a new version of the old Arthur Godfrey chord changer and added that to the system.”

One implementation of The Ukulele Support System
One implementation of The Ukulele Support System

And she has kept going from there. Here is a beginning ukulele student named Wesson getting started using the Ukulele Support System with Grant Keillor, who works with the Ukulele Kids Club.

“Once… I saw that child play, I realized I needed to share this with Ukulele Clubs everywhere.  They could do this for kids and adults in their communities and welcome them into their joyful activities.  This is an inexpensive, easy way to help wounded warriors to find the joy of making music and friendships that will last a lifetime.”

This Ukulele Support System is not just one product – it is a system of adaptations, specific to the person and the disability. More developments are in progress, including a tuner system.

"The newest is in the works.  Most recently, a mom from Florida contacted me to help with her son's desire to play ukulele.  Sometimes although limbs are intact, they don't work well.  This young fellow is in P.T. working to use two fingers to hold his pencil and is excited because in conquering that he knows he will be able to hold some type of pick and use a chord maker to play uke!  THAT is the goal he set his sights on.  Lots of wisdom in a little 7 year old!!!  So I am using heat sensitive plastic to fashion a unit he can hold, unique to his needs, and a felt pick will slip into the unit for him to strum."

Uke accessory to stabilize the ukulele for players with no use of elbow
Uke accessory to stabilize the ukulele for players with no use of elbow

Deborah Guarneiri has been able to spread the word through her music teaching and ukulele networks, including the Ukulele Kids Club – a music therapy organization that works with children in hospitals.  She sees this as a grassroots, collaborative effort - and invites others to join in the work. I met Deb at a ukulele festival in Rochester this past fall, and she has kindly been answering my questions over email.

You can follow along with developments through the Ukulele Support System page on Facebook, which she maintains to help other teachers, parents, and potential players to learn more about using the technology, share it with others, and even help to develop some of these solutions. 

Ukulele playing is often a social, group activity, and since this community has been important to Deb, she also tries to share opportunities for people to enjoy music with others. 

"In short order, I saw the importance of these young children experiencing not just music, but the opportunity to experience a Master ukulele player. 

Kimo Hussey was giving an Ukulele Retreat in Houston when I had the opportunity to meet the first child we outfitted there.  I say we, because I am not always able to travel due to costs and time, so I have been blessed with dynamic friends, who have helped locate and get families comfortable with working long distance with me.  But in this retreat, our first little guy started listening to Kimo play while we were all just sitting in our friends living room.  First, the child stopped playing with the pup that was there, then I saw his limbs start to strum in rhythm, and then slowly sitting on his knees on the floor kept inching closer to Kimo's feet. 

A few short few moments into the song, this child was sitting at the master's feet totally engrossed in the music and intently watching this man's hands create some of the most beautiful music.  Once we tweaked the child's equipment, he actually was able to join a Kanikapila (Hawaiian for a 'play in' or jam) and sit side by side and play songs with this professional musician.  Sitting on the sidelines, I was one teary eyed observer because I saw the real deep value in what was happening!  

Each child we outfit and give the freedom of playing and the inclusion to the music community is a gift back to us in joy!"

Mona Seghatoleslami
Mona Seghatoleslami is the Music Director, host and producer on WXXI Classical 91.5 FM weekdays from 4 p.m. to 7 p.m. She also hosts the lunchtime concert series Live From Hochstein Wednesdays at 12:10 p.m., interviews musicians, produces special programs, and works on any project she can find that helps connect people and music in our community through WXXI.