A long running cable series, “Carol & Joe's Xtra-Ordinary Life” on the Manhattan Neighborhood Network (mnn.org) was conceived and produced by a Care Design NY member and his mother.
The cable show started as a hobby. Carol, the mother, explained, “I was inspired by my son, Joe, in his everyday life as a challenged person in the community. The monthly production is a combination of what we like to do and what our life is like. Joe comes up with ideas for content--where to go and what he wants to record and share with audiences.”
There have been about 280 episodes spanning 24 years produced to date and each offers a fresh inspiring narrative, for a mother and her young to mature adult son with special needs. Their creativity on explorations inside and outside their home offer a vibrant new look into ordinary daily activities. Some shows are entirely about the caregiver, Carol, and her pursuits in life, ideas, and feelings, thus the caregiver as a person and their important role is illustrated for viewers. Carol states, “The video documents our lives, and it is also thru their eyes, an historical zeitgeist of New York City.”
On one episode, we see Carol singing and Joe playing a violin. Carol explained that Joe’s maternal grandfather was a professional musician, and she has a bachelor’s and master’s degrees from New York University (NYU) in Music Therapy. She was eager to share her passion for music with Joe to nurture and facilitate Joe’s communication skills.
Joe remembered, when Mr. Rogers passed, he dedicated an entire show to singing Mr. Rogers songs and interviewing the NYU Nordoff Robbins Music Therapy Clinic Director, Alan Turry ( an avid fan of Mr. Rogers). You can see and hear the excitement in Joe’s voice as he remembers this special moment.
Carol described other opportunities to curate small but monumental everyday moments for Joe. This enrichment has fueled his development both mentally and physically (as when he learned to ride a bike over the course of 14 years and as his speech developed thru music activities and language activities).
Joe is an artist, poet, songwriter, author, and video producer and often has various projects in the works. Joe’s photography portfolio documents his almost daily adventures. In addition to regularly producing their show and pursuing photography, Joe worked for Barnes and Noble for 10 years. In fact, Carol and Joe videotaped Joe entering and exiting Barnes and Noble Bookstores in pursuit of a job. Finally sending the video as a request for employment. It worked! Some shows reveal Joe’s enjoyment at working and when the store closed, his final comments about that 10-year job loss.
Carol & Joe feel loss is a big part of life. Death is a certain kind of loss that hurts because people we love are gone forever. They are creating a “Bereavement Kit” which includes their poetry book about loss and death. Joe’s connection to death and dying began when his maternal grandmother passed away. He realized that his painful loss could be expressed in art, poetry, music, drama, and dance. Expressing his pain was a great relief and he realized he could share his journey in hopes of helping others face their grief.
To help the process of healing, Carol suggested a book for preserving the plastic cards they obtained at funerals of relatives and friends. The cards have the person’s name, birth date and death date and a line or two as tribute to their lives. He collects the funeral card, glues a treasured photo of the relative or friend in the book of family death records and Joe writes about his feelings and beliefs. This theme appeared in several of their TV shows.
When asked what inspires them, Joe, and Carol both explained that it’s hard for most people to talk about death and especially during the COVID pandemic. They feel their kit and poems might bring Joe’s positive outlook on life and willingness to share with others the experience of their grief. Carol stated, “it just comes natural; when he likes to do something he just does it." So, when Joe kept decorating his room for each holiday Carol thought it would be a good idea for Joe to have formal training but Joe was not accepted into the Art & Design program at FIT. Instead they pursued his passion for decorating with education through real-life experiences and courses for adults. Carol thinks that this , perhaps for the better although the differently abled could be included in college experiences in a particular way that is a win-win for all students. After all, in real life differently abled go beyond the walls of containment and structure to the places where we all converge.
Sandra, Joe’s Care Design NY Care Manager stated, “Joe inspires me through his positivity even during tough times like the pandemic. He makes me laugh, he makes me smile, and he’s very talented.”
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