In the years since I started my career, I’ve grown to appreciate what I now understand to be a unique perspective compared to a typical professional. My formal education is limited to a Bachelors in Science compared to the Masters or Doctoral level coworkers with whom I shared cases, but what I came to appreciate was my position to gain a unique breadth of view. I learned from Behavior Analysts, Social Workers, and Clinical Psychologists in the SST office and collaborated with a menagerie of specialists outside its walls.

While there is of course immense value in each specialist’s perspective, I’ve found that there are often situations in which one can view their realm of expertise like a hammer while any sort of behavioral issue is their “nail”. In kind, I’ve also found that behavior is nowhere near as simple as we’d like to think it is, and that many factors playing into a specific action can lead to increased or decreased viability of certain treatment methods.

When the behaviors these professionals discuss lead to harm and place the disabled person at risk of institutionalization, the stakes are high. Fear has historically led to the acceptance of inhumane treatment, and there is no doubt in my mind that institutionalization is inhumane. I’ve met a few who lived much of their lives in the institutions with which I am most familiar–State Operated Developmental Centers: one spit at anyone who came near them, and the other apologized for needing to use the restroom each and every time despite years of living in community placement.

In the interest of preventing harm to both aggressor and victim, I was in the unique position to go wherever the behavioral challenges were, as opposed to remaining confined to an office or clinic. I was empowered to collect data on the behavior in order to better understand why it occurred. In some cases it was related to mental illness or medical distress, some others related to trauma. Many were related to frustration in being unable to communicate a need or living in environments unsuitable for their sensory needs. In vanishingly few were acts of what I understand to be malice.

I have worked to keep myself wary of potential “false positives” in interventions—in which overly restrictive means can lead to a superficial “improvement” in behavior without addressing the underlying reasons for it. I am not interested in (metaphorically) cutting off a starving person’s hands for stealing a piece of bread. This process is a long and especially challenging one. I have made errors in judgment in this regard. While I can’t let those errors consume me, nor is it fair to pretend the impacts aren’t real for those clients and their families.

To whatever credit it may offer me, in the most acute instances of an error in judgment, in which violence became a reality, it became my goal neither to restrain my client nor sit aside and watch violence occur. If someone was getting hit it was going to be me and I was going to ensure that I remained a calming force despite the chaos of the situation. It was not uncommon for me to leave a session bloodied, bruised, or with ripped clothes, yet I only restrained someone once in my time with SST.

Instead, I found value in listening to professional insight as well as the voices of self-advocates who experienced the same conditions as my clients. It is not always intuitive, but I have consistently found that self-advocates often have answers for questions about having a neurological makeup significantly different from most other people. 

For many parents, context is nearly all of the battle, and for children with conditions that affect far less than 1% of the population, that context can be nearly impossible to find. On top of that, conditions like Autism Spectrum Disorder have so much variety in their level of support need, sensory experience, etc., that what works for one Autistic kid might be terrible for another! It’s entirely overwhelming! Yet that context is what enables us to prevent violent outbursts in the first place, and it’s exactly that overwhelming quality to it that has had me ceaselessly looking to learn more. As my partner will complain, I spend a good amount of free time reading articles and blogs written by scientists and self-advocates progressing our understanding of the brain as well as the qualities of the myriad excitingly unique brains all bunched together under the label “Intellectual and/or Developmental Disability.”

Atop that excitement also rests an acute awareness of the fact that my appreciation for the ways in which the brain can differ makes me rather unique. The history of treatment of people with IDDs is one riddled with tragedy borne out of fundamental misattribution of intent. If you’re not familiar, I recommend looking at Parallels in Time in the resource section of the site. I don’t believe there has ever been a time where this grouping of people has been treated well. I can say with confidence that even today, some children born with IDD are being hidden away from the world, only to appear when expelled from their family home or left with nowhere to go after all other supports are gone.

Bearing that history in mind, I find it important to provide photographs that families can be proud to show to friends, neighbors, and other family. To show that these people can experience joy the same as anyone else when given the same sense of safety and security free from coercion. If along the way I can help to foster a better understanding of the conditions affecting my photo subjects, I would consider myself lucky to do so.