I am a lifelong learner and teacher in various ways, specializing in curriculum development for adults – who support and care about people with intellectual disabilities as family members or staff, and for people with disabilities. I really like the ideas of c0-learning, particularly Paolo Freire’s, creating opportunities for dialogue and collaborative partnerships. I am grateful for many collaborators but particularly Susan Stanfield with whom I have worked closely for about 25 years, and Shelley Nessman. My greatest teachers have been self advocate leaders – Barb Goode, the late Arnold Bennington, Lorie Sherritt and Gordon Fletcher. I almost always learn as much as I teach.
I work at Spectrum Society, where I am a Director of Inclusive Learning and Research, a division that hosts, delivers and participates in workshops, training, and facilitation, and also supports self advocate co-leaders in these. If you don’t work somewhere you love, you should aim for that and I hope you achieve the goal of having a career based on your avocation with people you care about, who care about you. Spectrum resists the institutional and focuses on the idea of interdependence.
For the last several years my passion has been a project on social/support networks for people with disabilities, which Susan and I have co-led, documented in this blog/newsletter. Through this project we’ve started a small publishing house, done some research contracts, and travelled from Nashville to the far north of B.C. (the start of the alaska hwy) doing workshops and facilitating gatherings around what we’ve been learning for and with folks with disabilities, families, community members and agency teams. We’ve recently branched out into workshops for staff in this field, who are terrifically under-trained and under-supported and yet, somehow, do terrific things (some of which aren’t even on their evaluation). The workshops we do are going to be uploaded soon on a site of their own.
I didn’t come into this field purposively. I first studied art and particularly print-making, and then art history, and then went into education as I became increasingly interested in the idea of how knowledge moves from one person to another. At the end of my teaching degree I realized that while I loved education theory, I was on my way to working in the school system – and I didn’t like schools, teachers, or large groups of children. I took a career-pathways course in which we had to interview three people who seemed happy at their work, and the idea of it was that in those interviews we’d get clues about what we might want to do as a career. Two of them were interviews with professors, and out of those I ended up in grad school studying literature, and the third one was with a woman who worked in a group home. I got more and more excited about what she talked about (my field of study in English was minority literature of gay, black, feminist and colonial authors and my field in education at the time was the needs of prison inmates as adult learners) and at some point she picked up the phone, called the Executive Director of the agency and I had a job the next weekend. I worked in many homes and programs, most of the time in a state of the art communication facilitation day program, which wasn’t nearly as great as they thought it was, and then finally I decided that given that the walk wasn’t being walked as much as the talk was being talked, I would move on. But I’d gone from reading authors like James Baldwin and wistfully wishing for a civil rights movement to finding out that there people essentially imprisoned in their backyards, which connected to my backyard. Soon after, I found Spectrum. In my various roles there I’ve been able to do lots of training and facilitation, and have specialized first in supports for people with augmentative communication, then for folks who have challenging behaviours, and most recently for self advocates who want some degree of support but want to be independent as well. At some point in those years I graduated from the Vancouver School of Homeopathy with a DCH and a CCH. While I no longer practice on individuals I am happy to recommend a great homeopath to you and I learned a lot about how to think like a homeopath, which is a lovely way to approach everything I do.
Part of what I’ve been able to do, at the end of all this (or, hopefully, in the middle of my career) in ways that I hadn’t ever predicted, is incorporate art, humanism and social justice – illustrating books and most recently facilitating and illustrating a plain language translation of what was already an excellent government document. They are currently turning the drawings into a film, which is so much fun. The other thing we’ve been focused on is writing and publishing to address the need for locally produced materials that are usable by families, staff and people with disabilities. Some of my articles are here.
Currently I am working on a Master’s degree in Integrated Studies through Athabasca University, specializing in equity studies and adult education. My focus in this is examining the role of people with intellectual disabilities in participatory leadership: how are they parts of effective leadership groups and how might they become parts of inclusive/interdependent leadership groups? In interdisciplinary studies I’ve been loving the bringing together of so many of the things that have interested me throughout my life – art, education, literature, sociology, research, philosophy and disability studies. My other current interest is in interpersonal neurobiology and the ethics of contributing to loneliness.
My avocation as a volunteer (odd word for what is more my collection of friends) is the support of people with disabilities through People First and other self advocate groups and initiatives. I have been a provincial advisor for People First B.C. for about 17 years, with some time off when we adopted our son, and this is where my most important learning has been, and where my most important teachers have been found.
My family is really my true passion. I was young and gay in a time when we didn’t expect to be able to raise children, or marry, and it’s been a huge gift to live into a different time where these things are possible. We live in New Westminster, B.C., which when we were duking it out historically as to who was going to be the capitol of the province, got an asylum instead… hmm… oddly, pretty much everything I’ve done in my working life has been to help people heal from their experiences at Woodlands and in similar places (some of which look like real homes but are really not), and to demonstrate that no one needs to be institutionalised ever again. It’s not good for them, and it’s really not good for our communities which I believe are enriched, increased and made far more magical through inclusion and interdependence.
Although I never lived in New Westminster as a child, I was born here (there was no hospital where my family lived) and visited a few times a year. I loved new west – heritage buildings, a sense of decorum, amazing plantings in the public gardens. When it was time to find somewhere to situate our growing family I fell in love again. Unfortunately, we’ve gone from being a little pocket between some aggressively developing communities to becoming our own little aggressively developing community… but we’ve loved living here.
My partner and i have been married a couple of times – once by a Rabbi on a wonderful day and then later, when gay marriage was legalized in B.C., by a justice of the peace. We have four children, ranging from 12 (going on 21) to 28, with a range of challenges and gifts. For the last twelve years we have been foster parents to children with significant disabilities in combination with psychiatric challenges and for some reason eating disorders. I think this is just because we like to cook and I love to eat 🙂 and perhaps its contagious. Our last foster child is with us as I write but will be moving on into her own adult life over the next year or so as a strong, independent young woman who has realized so many of her goals. The book I am currently writing is called Renegotiating Reciprocity: supporting our children and adults with disabilities in our families, networks and communities and is the first thing I’ve written from a family perspective (and the hardest thing I’ve written).
I write for three blogs/newsletters – one for our agency, one for the project, and this one. I also support the blog of B.C. People First. This blog is my own personal site so a bit more eclectic. You are likely to read about whatever is my current passion – learning, art, gardening, camping, books or people.
email me at firstname.lastname@example.org
my twitter account is @imagineacircle
for my project it is @101friendsbc and for our agency @ssclspectrum
i love facebook – search for aaron johannes – and let me know who you are and what our mutual interests might be.