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From Aidan’s Voice to AbleVoices

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Editors

Sorcha Hyland
Lara Mann
Deb Griswold
Elizabeth Kozleski

Jen Vogus is a parent, educator, photographer, and disability advocate.  Her passion for photography began years ago when she started taking pictures of her son, Aidan, who does not communicate verbally.  She captured his daily life and favorite things so he could share them with peers and teachers at school, giving him a voice to share his interests and all that he is capable of doing.  She is a graduate of the TN Council on Developmental Disabilities’ Partners in Policymaking Leadership Program, a board member of The Arc Williamson County and a founding and continuing parent advisory council member of WCSLink, a special education parent organization that collaborates with the local school district.  She combines her passions for teaching, photography, and advocacy by developing and leading photovoice projects that put cameras in the hands of young adults with disabilities, empowering the participants to utilize their own photography as means of self-expression.  She has had the pleasure of presenting her story and about the AbleVoices program at a numerous state-wide and national conferences including The Arc national convention and TASH’s national conference.

Jen and Aidan Vogus

I’ve always had the tendency to notice and appreciate the more ordinary things in the world around me, but it is my experience as a parent of a child with a disability that has really heightened this for me.  My son, Aidan, began having seizures shortly after birth due to a novel chromosomal deletion.  His development lagged behind his typically-developing peers as those first several months and, eventually, years went by.  No matter how many doctors we saw, how much physical and speech therapy we did, and how much love and support we gave at home, he was not meeting those age-appropriate milestones.  Slowly, I began to understand the challenges Aidan would face and the degree of help and care that he would always need.

Aidan swinging

When reading books and talking to professionals about parenting a child with a disability, one recommendation I heard often was to put behind the expectations you had for your child before he was born.  Longing for baseball games and learning to ride a bike were counterproductive- a parent shouldn’t focus on what he cannot do, but what he can do.  Which made perfect sense to my husband and I, and we welcomed that approach whole-heartedly.  But even for the most loving and patient parent, this can be challenging at times when you are in the midst of life’s daily struggles where even the simplest of things are difficult and you long for a “normal” life for yourself and especially for the child that you love unconditionally.

Aidan and his dad

When Aidan entered elementary school, it became increasingly difficult for me not to compare him to the other students and constantly worry about what the future holds for him.  The gap in abilities grew wider and wider as each school year passed and the list of activities he could participate in got shorter and shorter. But I knew I had to tackle my feelings of worry and negativity that were keeping me from happiness and living in the moment.  That is when I decided to really embrace the “ability” part of disability… it didn’t matter what the other kids were doing- it only mattered what Aidan was doing and more importantly, how he was feeling.  I really set my mind to notice the little things more than ever.  Little things like his infectious smile, his unbridled excitement when he saw someone mowing the lawn, his quiet focus as he watched an animal go by, and his amazing connection to and love for music.  Aidan is Dave Matthews’ biggest fan!  Because, for kids like Aidan, and really all kids, the little things in life are the big things and they need to be celebrated.

Aidan saddles up!

Parents are their child’s best advocate and this role is especially important when your child does not communicate verbally and has considerable physical challenges.  At school, Aidan has limited ways to communicate with his teachers and peers and they are often not able to see the things in him that I did.  I shared Aidan’s “little things” with his teachers and aides but the stories got lost after they were told.  I tried to think of a way I could share this information in a more permanent and visual way.  So I began to photograph the things Aidan was doing and the things that he enjoys.  I sent the photos with captions to school with Aidan on Monday mornings for him to show his teachers and peers.  It gave him a voice to share his interests and all that he was capable of doing. 

Aidan swimming

Teachers and other students were delighted to learn that Spiderman is his favorite superhero, that he takes riding lessons on a horse named Lady, that he can hold his breath and swim down to the bottom of the pool, that he loves the thrill of the wildest rollercoasters, and that he gives his dad the biggest bear hugs of all.  “That is so cool, Aidan!  I like those things too!” students would say.  This feedback, in turn, helped me to realize that Aidan is, in fact, more like other kids than he is different from them.  And the other adults in his life were seeing this as well and becoming strong advocates for him.  Taking photos that made me grateful for Aidan was also a catalyst for him building more lasting and meaningful connections and interactions with his peers (who became his friends) and his teachers and the other adults in his life.

Aidan shares his photos

I began putting the photos in a book and that inspired others to contribute to it.  His teachers and aides at school also began taking photographs of Aidan during the day to share with us at home all that he does and enjoys at school.  Pretty soon his photo book took on a life of its own- he helped type the captions, glued the photos into the book, and shared his visual stories with everyone.  He has been keeping a photo book of life at home and school since the second grade and now he is a junior in high school!  And, more recently, we’ve started his own Instagram account to share photos. 

Aidan and Duke

As a result of taking these photographs of Aidan, I became more and more interested in the technical and artistic aspects of photography. I immersed myself into learning the various settings to creatively control the camera and obtain better exposures, which led me to getting involved in classes, workshops, and related professional organizations.  So capturing Aidan’s “little things” has also made me grateful for an additional reason- it’s given me an outlet that is creatively, intellectually, and professionally stimulating.

Jen working with an AbleVoices student photographer

After seeing the powerful effects of photography for Aidan, I sought ways to take the benefits to him to people with disabilities more broadly.  Specifically, I’m now using photography as a tool for communication and advocacy beyond Aidan’s past needs (specifically the photo books) and just looking at and sharing photographs, but taking them as well.  There is a growing body of research on the benefits of photography with under-represented groups, such as at-risk youth, women without healthcare, and older people with early-stage dementia for example. Putting cameras in the hands of people who feel like they “do not have a voice” as an outlet to express themselves and tell their story has become an increasingly utilized approach. Research and practical interest in utilizing photography with children and adults with disabilities are expanding.  I realized quickly that I am not alone in my discovery of the benefits it has offered Aidan.

Jen and an AbleVoices student.
Photo courtesy of Robin Conover

After learning about the photovoice approach and participating in an intensive training, I have developed the AbleVoices program, teaching photography as a means for self-expression and empowerment to young adults with disabilities transitioning from school to adulthood.  Working with a new group each semester, they engage in several getting-to-know-you activities, learn how to use digital cameras, participate in photo scavenger hunts to develop their “eye”, learn basic composition techniques to better tell their story through photographs, and have collective discussions about their photos.  The culminating experience of the project is to exhibit photos that showcase their strengths and represent themselves as individuals in a gallery space so that family, friends, and the community can celebrate their work.  Students are able to keep their camera so they can continue to make photographs after the project ends. 

An avid photographer in Jen’s AbleVoices program
Photo courtesy of Robin Conover

Having people with disabilities share and take photographs embraces the concepts of dignity, self-determination, and allows us to see new possibilities and opportunities in the lives of those we interact with and care for so much.  We’ve all heard the phrase, “A Picture is Worth a Thousand Words” (probably a thousand times!) but there is real value in this cliché, sometimes in unexpected ways. 

My challenge for people in the disability community is for them ask their family member, their student, their client, or their loved one to express themselves by sharing and taking photographs… the end result is a direct line to the heart!  What we discover is that we learn as much from them as they learn from us.  Photography is a powerful way to create a better tomorrow for people with disabilities!

Jen and AbleVoices students

To learn more about the AbleVoices program, watch this short YouTube video FHS AbleVoices or visit Jen’s website at www.jenvogus.com/able-voices.


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