Evening at the Beach, Santa Barbara, 2020. My sons, enjoying El Capitán State Beach, near Santa Barbara, California. This is one of about 6000 curated images I’ve made over the past six years. It is part of an ongoing personal project to document memories for my twin sons.
About six years ago (as of this writing), I embarked on my most ambitious photography project to date. I call it the Image Trust, and, ironically, it is not hosted on this website. The Image Trust is an ongoing effort to document memories for my sons, both of whom have disabilities that will prevent them from curating such a collection later in life. While the images are mostly private, the concept is one that I believe is important for families with special needs children.
The following is a mission statement I wrote at the time — a challenge to myself, sent to friends and family as witness — to pursue this effort faithfully, diligently, and with well considered intent.
I share this here with the hope that others might be inspired by the idea.
What is the Image Trust?
The Image Trust is both a concept and a personal commitment, inspired by the broader goals of a Special Needs Trust. It is an ongoing project to document life for my sons.
In the context of cognitive disabilities, it is sometimes necessary to establish a legal instrument called a Special Needs Trust. An SNT is a way to designate property and assets that will be managed by a trustee on behalf of a beneficiary with special needs. A well designed SNT safeguards assets for the future, while at the same time preserving the beneficiary's qualification for essential support programs.** It is one of the few tools parents have for ensuring that their disabled children will be funded and cared for later in life — after the parents’ death. (** Note: I am not an attorney, and this is not legal advice.)
Borrowing the term, I believe that the concept of "Trust" can be applied to family memories. It has occurred to me that some people with cognitive disabilities might not be able find and curate their own family memorabilia. More personally, my sons will not be able to do that in their future without significant assistance. I worry that such an endeavor would be ignored in my absence.
It is difficult for me to imagine a future with no family photographs. No reminders of the past. No reflections of loved ones to keep us grounded. I would argue that the need for preserving memories is even more important for cognitively impaired adults than it is for typical adults.
I consider it my responsibility and privilege to create and curate a collection of images for my sons' benefit. Not only do I strive to create, organize, and store images, I intend to produce tangible final products: books, prints, audio, video, and electronic content that they can absorb today and into the future, long after I am gone.
The Image Trust, therefore, represents my commitment to curate a collection of family images and audio, so that it can be enjoyed by my boys for years to come. I am the trustee (for now), this collection is the asset, and my sons are the beneficiaries.
The Image Trust is a family collection, and therefore private (after all, who wants to see family photographs except the family?). However, the concept behind the Trust is something I feel compelled to share. If you have a special needs child and you are reading this, please consider doing it for your own family.
A note about blindness as it relates to this project
A significant, and perhaps ironic, challenge to this endeavor is that one of the beneficiaries is blind. To that end, I have been creating audio imagery for this collection – short videos and audio recordings. I've come to believe that photographs, even the best photographs, are merely two dimensional clues that lead to much more meaningful interpretation in the "mind's eye." In this sense, both audio recordings and photographs are on the same playing field -- they are signals that are interpreted by the mind to trigger memories and reveal deeper meaning.
[Update: since posting this entry, another ImageTrust photo was published in USA Today. February 21, 2023.]