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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
Brian Herndon, PhD., is Associate Professor of Teacher Education at John Brown University. He also holds a Graduate Certificate in Leadership in Special and Inclusive Education Program from
The University of Kansas School of Education.
I’m a numbers guy. I love numbers. I did my dissertation as a quantitative study because the last thing in the world I wanted to do was to transcribe countless hours of interviews. At the time, there was nothing about that process that appealed to me.
….Numbers tell a story.
Let me tell you mine:
46 – the number of trips I’ve taken around the sun
17 – the number of years I’ve been joined on those trips with my wife, Jenny
4 – the number of children we have
1 – the number of children we have with disabilities
5 – the number of degrees/certificates I have
21 – the number of years I have been an educator
6 – the number of years I served as a school administrator
3 – the number of years I’ve served as an educational advocate for families of children with disabilities
100s – the number of times I’ve served as the Local Educational Agency Representative (LEA) for Individualized Education Program (IEP) meetings
0 – the number of times I have felt comfortable dropping my son with Down syndrome off at school
Those are some numbers! Yet, there is something missing. There is a narrative behind those numbers which doesn’t emerge by examining the numbers, alone.
Lived experience has a way of showing the importance of the narrative behind the numbers. As I examine those numbers, I see one that really stands out to me. It’s not the number of degrees I have, though that’s impressive. It’s not the number of times I have served as an LEA in IEP meetings, though that’s also impressive.
It’s the number that doesn’t hold a lot of value: 0. You see, that number, above all the others listed in my story, holds a tremendous amount of value to me. I have a son with Down syndrome. His name is Nate. He is a very bright, articulate boy with 10 years under his belt. He reads, writes, and understands numbers. He’s not on grade level, but he is (mostly) educated in the general education classroom. He has behavior issues from time to time, and this is the thing that causes me the greatest fear.
Here is a bit of the narrative that gives value to the 0:
I’m a professor at the local university in our town, and my son’s school is on my way to work, so I am privileged to get to take my son to school every day. Every day, this is what our drive sounds like:
Me: “Nate, tell me what your day is going to look like today.”
Nate: “It’s going to be good.”
Me: “What does ‘good’ look like?”
Nate: “Listening to my teachers. Doing the teacher’s work. Following directions. Being responsible.”
Me: “Very good. I hope it goes well for you today. How many smiley faces do you think you will get on your chart?”
Nate: “All of them!”
Me: “Good deal, buddy! I hope that happens!”
As I ‘round the corner in my ’02 Outback, I see Nate’s school, peeking out from behind the trees, as if to taunt me in a childhood game. My stomach tightens. I become aware of my breathing. “Just breathe,” I tell myself. “It will be okay,” I whisper reassuringly. “He’s had several good days in a row. So, today should be no different,” I say to myself, trying to ease the anxiety building in my chest. I try to relax as I pull into the center turn lane, clicking on my left blinker.
We make the turn into the school’s driveway.
“Nate, take your buckles off and get your backpack on,” I tell my son. We roll toward the drop off lane. “Alright, get out. Have a great day! Be good!!” I say it almost as if to convince myself that it’s possible as much as I am telling it to him.
My experience and my education have taught me that all children with disabilities should be educated in the Least Restrictive Environment, unless the nature and severity of the disability is such that the child cannot be educated with his or her nondisabled peers, even with the use of supplementary aids and services. IDEA 2004 does not provide definitions for this statement beyond what you have just read. IDEA 2004 does state that children whose behavior is severe enough can be removed from the general education environment.
“Education is the most powerful weapon you can use to change the world.”
My 46 trips around the sun have taught me that not all school districts view special education law through the same lens. There is varied interpretation about statements in the law, specifically when it pertains to educating children with disabilities alongside children without disabilities. We have worked very hard to make sure that our son has equal access to the same things that all children have access to in school. We have worked very hard to ensure that our son is educated alongside his peers without disabilities.
It has not been an easy journey, and it has not been without great sacrifice. I believe that the mild bouts of anxiety I experience nearly every day are related to the fact that I know all of our work on behalf of my son could come to a halt, should the district determine that my child’s behavior is too disruptive for the general education classroom.
My education through the University of Kansas School of Education has taught me that when we educate children with disabilities alongside children without disabilities, we normalize disability. We help those without disabilities view those with disabilities as experiencing something that is a normal part of the human journey. Children with and without disabilities become adults with and without disabilities.
When disability is normalized and children with disabilities have been part of the regular education setting for most of their educational career, then being an adult with a disability is not so disabling. It is our hope and dream that our son, Nate, will be a valued and valuable member of society, contributing to the world around him in a myriad of ways. My wife and I understand that the likelihood of this happening diminishes greatly if he ends up in a self-contained classroom. So, even though our son is only in 4th grade, we know how incredibly important it is that we are building a solid foundation of inclusion for him.
“Inclusion is not a strategy to help people fit into the systems and structures which exist in our societies; it is about transforming those systems to make it better for everyone. Inclusion is about creating a better world for everyone.”
Diane Richler, past president, Inclusion International
Returning back to that “0” in my story, I know that I will never feel comfortable dropping off Nate at school or waiting in the car rider line to pick him up. I have three other typically developing children, so I know the feeling that other parents experience when they drop off or pick up their children at school.
However, the feeling is different with Nate. If I never feel that way dropping off or picking up Nate, it will be okay. It is minor in comparison. The fight for my son is real, and I will not back down until he has true equality under the law. Even if it means experiencing a bit of pained anxiety in my chest every day.
I write this post because I believe it is important for practitioners and researchers, alike, to understand the narrative of the “special needs parent.” I’m a member of a few Facebook pages for parents of children with Down syndrome. We don’t experience life in the same way as other parents, and this includes the simple things like dropping off and picking up our children from school. The anxiety we experience when we see our child with their behavior improvement plan sheet in their hand as they make their way to the car rider lane runs deep, and it extends far beyond the drive home. We want to feel “normal,” whatever that may be. Right now, for us, “normal” is associated with anxiety and pain.
I suggest that educational practitioners and researchers note this, make the necessary accommodations for us, and include us in research on this matter. My hope is that together as researchers, practitioners, and parents, we can create a world where disability is not so disabling and where children who experience life differently will be included as a regular part of society. Until then, we “special needs parents” will continue to fight, both silently and vocally, yet always with the pains of anxiety and stress coursing through our veins.
Dr. Herndon is Director of the Missouri Center for Inclusive Education.
“We envision a world where school systems are designed to accommodate the needs of all children (Kozleski, Thorius, & Smith, 2014; Kozleski, Gibson, & Hynds, 2012; Bryk, Gomez, Grunow, & LeMahieu, 2015). Schools have, in the past, segregated children, specifically children from historically marginalized groups of people (Theoharis, 2007), and it is our hope that we change the practice of segregating children, specifically children with disabilities. Children with disabilities deserve to be educated alongside their typically developing peers, and we will always work toward that end.”
Bryk, A.S., Gomez, L.M., Grunow, A. & LeMahieu, P.G. (2015). See the system that produces the current outcomes. In Learning to improve: How America’s schools can get better at getting better (pp. 57-85). Cambridge, MA: Harvard Education Press.
Kingston, M., Richards, C., Blank, R., Stonemeier, J., Trader, B., & East B. (2014). Leading education reform initiatives: How SWIFT (Schoolwide Integrated Framework for Transformation) coordinates and enhances impact. Issue brief #2. National Center on Schoolwide Inclusive School Reform: The SWIFT Center, 1-14.
Kozleski, E.B., Thorius, K.K., & Smith, A. (2014). Theorizing systemic reform in urban schools. Ability, equity, and culture: Sustaining inclusive urban education reform, (pp. 11-31). New York, NY: Teachers College Press.
Kozleski, E.B., Gibson, D., & Hynds, A. (2012). Changing complex educational systems: A framework for collaborative social justice leadership.
In Uhl-Bien, M. & Ospina, S. (Eds.), Advancing relational leadership research: A dialogue among perspectives (pp. 263-286). Charlotte, NC: Information Age Publishing.