I recently had the pleasure of meeting James Reynolds, Manager of Spectrum Press, through an email exchange. The moment I read what Spectrum Press was about, and its work with authors and supporters of people with intellectual disabilities, I had to know more. Big thanks to James for providing such thorough answers to my simple ‘6 Questions.’ Spectrum Press is doing important work. Mark/Editor
MM: James, thank you for taking the time to answer some questions. Let’s start with Spectrum Press, what it does and what you personally do there. Can you fill us in?
JR: Spectrum Press is an independent social enterprise division of Spectrum Society for Community Living and part of a larger enterprise called Spectrum Consulting – Collaborative: Learning; Research; Press. Spectrum Press is the publishing arm of our social enterprise, and we specialize in books and media by, for and about people with intellectual disabilities. We are in our fourth year in business, and we have published seven books, a DVD, and a CD.
As a social enterprise, we have a few intentions that are different from a regular for-profit business. First, we create revenue that furthers the mission of our organization, which is to provide person-centered, individualized supports to those we care about. Second, we create jobs for people with disabilities, who are our research companions, shippers, receivers, collaborators, models, workshop co-presenters and authors or co-authors. Third, we hope to use our leverage as a best-practice organization to demonstrate to our communities ways in which we can support those we care about as valued citizens who contribute much to our culture. Fourth, we intend to provide literacy programs for writers with disabilities.
My role as manager of Spectrum Press is essentially two-sided. On the one side, I take care of the day-to-day running of the press and our on-line bookstore (www.spectrumpress.ca). I arrange for us to have a presence at conferences and workshops to showcase our products. I make sure we have enough stock on hand. I help our packer/shipper to fulfill orders. I respond to inquiries, and I try to spread the word to as many individuals, schools and libraries as possible that we have some of the most indispensible, current and progressive works on disability issues available.
Secondly, I am part of our editorial team, working directly with our authors and collaborators on the formation of many of our projects, as well as taking part in proofreading and editing the final drafts of these projects. Perhaps my favorite part of this has been taking on the role of writing supporter for some of our authors with disabilities. It has been a humbling but rewarding experience for me to work together with people who are true heroes in the push for equality for people with disabilities. The way I see it, the LGBT community and people with intellectual disabilities are two of the last groups still working for true equality and basic human rights all over the world.
In my role as writing supporter, it has been an important yet challenging goal for me to keep our authors’ stories in their own voices. These are people who have, for the most part, never been asked to tell their stories, and if they have been asked, they are often told that they are wrong, or that they shouldn’t tell it the way they want. By allowing people to tell their stories in their own voices, what we have found is that a floodgate has been opened, and more people with disabilities than we ever thought possible are coming out and announcing to the world that they have a story to tell.
MM: Spectrum Press is a division of Spectrum Society. What can you tell us about Spectrum Society, its mission and how it started?
JR: Spectrum Society for Community Living is a non-profit society and charitable organization, formed in 1987 by a small group of friends and family members interested in developing community-based services for people with disabilities.
In the early 1980s, the provincial government in BC committed to closing three of its large institutions. Over the next decade, the government made funding available to community agencies to develop housing and support services so people could leave the institution and enjoy a better quality of life. From 1988 to 1996, Spectrum helped 20 people move out of Woodlands (British Columbia’s largest and oldest institution) into homes in Vancouver. Today, about a third of the people who get support from Spectrum have come from these institutions, as well as from some smaller hospital-like settings. Like the rest of us, many of these folks from institutional setting are getting older, and their needs are evolving. More and more, though, people are coming to us who have never experienced institutional care. These might be people who are from other agencies who want a different model of support, or young people who are transitioning from youth to adult services.
Spectrum Society’s mission is to support people with disabilities to experience full citizenship and genuine belonging in community. We are committed to continuous learning and improvement through research into leadership and best practice. As a service-providing agency, our focus is on strengthening the capacity of individuals and their personal networks, augmenting rather than replacing natural supports.
It shouldn’t come as a surprise (but for many it does) that people with intellectual disabilities want the same things we all want: to have a network of close friends and family; to make their own decisions on their own, or with the input of their network; to have their own homes and jobs; and to have romantic relationships.
Seeing a specific need, a couple of years ago, a number of community living associations, including Spectrum Society, connected with Qmunity, Vancouver’s LGBT Center, to start the Rainbow Discovery Alliance. This is a group for LGBT people with disabilities and their allies to connect and discuss issues, learn from each other, meet like-minded people, and have fun. Historically, people with disabilities have not felt welcomed in the wider LGBT community, and part of the mission of this group is to change that.
MM: How and why did you become involved in this organization?
JR: In 1989, I took a summer internship working for a senior’s agency in Vancouver’s Downtown Eastside. This is the poorest part of town. Drugs and homelessness are major problems. My job back then was half outreach and half in the office, working at the information and referrals desk. What I noticed was that there was a huge number of seniors coming to us who had issues of mental illness and intellectual disabilities. I would visit these people in their homes and talk to them at our office, and I would try to connect them with people and groups who could help them. My one summer internship turned into two summers, and in between, while taking some courses at university, I volunteered for their outreach program.
In the fall of 1990, I saw a job posting for a community support worker position at Spectrum Society. I got the job and worked my way up to manager, proud to be involved in the work of this very progressive agency. I worked almost exclusively with people who had come from Woodlands Institution – non-verbal people who were labeled as extremely behaviorally challenged. I really liked Spectrum’s philosophy, which was not to recreate the institution in a smaller setting, but to promote full inclusion in the community. For some folks who had spent decades in institutional care, this was no easy task. They justifiably took their time to trust us and believe in what we were trying to do. Some of these individuals were exceedingly anxious about the major changes they were going through. But, over time, all the people we supported were having obviously better lives. Still, there were always improvements we could make.
One of the things I like most about Spectrum Society is that we are not averse to learning from our mistakes. We not only make changes when we see the need, but two of our directors, Aaron Johannes and Susan Stanfield, started travelling around the Province, providing training for other agencies and groups based on what we’ve learned. As an example, several years back, Spectrum received a contract to go to several different communities in the Province and talk about helping people with disabilities to build personal support networks, which could in turn enable them to be more self determining and less reliant on government and systems. This lead to the creation of our first book – 101 Ways to Make Friends. Everywhere Aaron and Susan went, people had ideas about how to make friends and reconnect with family (build networks). These ideas were collected and turned into an easy to use, plain language workbook with one idea and one simple, explanatory drawing per page.
Within a few years, Spectrum Press was born, and in the spring of 2011 we launched three new books.
MM: Spectrum Press provides jobs for people with disabilities. Can you talk about that and about the larger workforce realities for people with disabilities?
JR: I mentioned a little about this in question one. In 2010, Spectrum Press paid out about $150 to self-advocates (self-advocates, by the way, are people with disabilities who have identified themselves as wanting to have full control over their own lives). In 2011 we were able to pay about 40 people between $25 and $600. Since then, each year we have doubled the amount from the previous year. Self-advocates have worked for us as authors and co-authors, project collaborators, models, research partners, packers, shippers, and workshop co-presenters.
Our larger enterprise, Spectrum Consulting – Collaborative: Research; Learning; Press, lead by Spectrum Society director Aaron Johannes, has eight regular employees, half with and half without disabilities.
In terms of the larger workforce realities for people with intellectual disabilities, in most places, including British Columbia, it can only be described as abysmal. The unemployment rate for this population is almost impossible to determine exactly. Governments everywhere tend to make a blurry distinction between people “unemployed” and people “not in the workforce.” Not in the workforce seems to mean not currently receiving employment insurance benefits, and these numbers are not included in the unemployment percentages we generally see. The thing is, many people have used up their benefits, or have given up trying to find work, but this doesn’t mean that they don’t want to work. To me, this is all bafflegab; meant to hide the sad truth. I would estimate the total unemployment in BC for people with intellectual disabilities in these two categories is somewhere between 60% and 80%. Also, far fewer people with disabilities work full time than their non-disabled counterparts. To make matters worse, unemployment numbers rise significantly with age.
It should be noted, too, that many British Columbians with disabilities spent their entire working lives in institutional care. By the time they entered the community, their focus was not on employment, rather on issues of aging and health.
Lack of employment is such an ongoing problem, that Spectrum Society, along with several other BC agencies, has made the issue a top priority in their current strategic plans. We need to turn these unemployment numbers around. People with disabilities have so many amazing gifts to offer employers, and it is up to all of us to work together to make it a reality that every person with a developmental disability who wants a job, has a job.
MM: Let’s talk about 101friends.ca, your project blog. It’s described on the home page as “Ideas and conversation starters for people with disabilities and their supporters.” Please tell us more about the blog and how it serves its community.
JR: The 101friends blog’s first post was an announcement about the publication of our first book, 101 Ways to Make Friends. Since then the blog has become an extremely popular e-newsletter with thousands of visitors per month. Our intention was to create a provincial forum for a continuing discussion of how people with disabilities engage in reciprocal relationships, and how we can expand and deepen the possibilities of those relationships. We also let people know about upcoming training events, our own and those of other workshop leaders, that have to do with this topic and focus on self-governance and authentic person-centeredness. We use the blog to post relevant essays and to promote our new publications. We have guest bloggers who are often writers with disabilities, and we regularly have themed e-newsletters, the most recent of which have been around the issue of employment. We have an open invitation to people to send us ideas and submissions.
Blog posts written by people with disabilities are consistently our most popular. Like Spectrum Press, the 101friends.ca blog focuses on inspiring stories of success and adventure. Over the five years that the blog has been running it has become more international in scope, with subscribers from all over the world sharing stories and comments about what is working (or not working) for them. We feel that without this level of communication and collaboration, it is all too easy to slide back into ways of thinking that do not promote the best interests and the most successful and happy lives of our family members, friends and neighbors with disabilities.
By the way, it is easy to sign up for email subscriptions – just go to our www.101friends.ca home page and click on ‘sign me up.’
MM: I have so many more questions, but this is a ‘6 Questions’ piece! Tell us please about the books that Spectrum publishes, your selection process, and what readers can expect to find from Spectrum? (There, I got 2 more questions in!)
JR: This is a tough question. I could write pages about our books. In essence, though, about half the books Spectrum Press publishes are written or co-written by people with disabilities. All of our books promote the building of relationships and the idea of self-determination. Some of our books are meant for children and people with lower literacy levels, and others are academic works for people in or learning about the community support or education assistant fields.
Our first author with a disability was Barb Goode. Her book is an autobiography called The Goode Life: Memoirs of Disability Rights Activist Barb Goode. Being chosen as Barb’s writing supporter stands as one of the highlights of my career. Barb Goode is a true Canadian hero who has done more to promote equal rights for people with intellectual disabilities than almost anyone. Among many other accomplishments, she has spoken about disability rights in front of the U.N. General Assembly twice. She was a key member of the legal team that won the right for Canadians with disabilities not to be sterilized against their will. She was one of the founders of the first People First organization in Canada. She has helped to translate many complex government documents into plain language. She has won every award imaginable, but is truly the most humble person I have ever met. And most of what she has done has been on a volunteer basis. I could go on and on, but people should just go to our web store (www.spectrumpress.ca) and buy her book!
One of our most recent self-advocate publications started out as a monthly blog post on 101friends.ca. Each month for fifteen months, Sheenagh Morrison, a young rising star in British Columbia’s disability rights movement, asked disability researchers about the research they are doing. The blog posts were so popular that we decided to publish the interviews as a book titled Researching Researchers: Interviews with researchers about disability. Sheenagh tailored her questions specifically for each researcher she interviewed, but she had two questions she asked everyone. 1) Can you tell me about someone with a disability who has been important to you? And 2) Do you think that it is important for people with disabilities be involved in research that relates to them? These two questions became the thread that wove these interviews together. We feel that this is an important book, in that it is one of very few works of disability research lead by a person with a disability, and as such, will be of interest to self-advocates and their supporters, as well as people taking community support or special education courses.
I will mention one more book. Getting to Community: Supporting People with Developmental Disabilities in their Pursuit of the Good Life by Susan Stanfield. Susan is one of the founders of Spectrum Society. She is a Spectrum Society director, as well as a well-respected educator, writer and workshop presenter. This review of Getting to Community gets to the heart of Susan’s accomplishment: “Susan offers an elegant and precise voice to a new era of supporting interdependence and authentic roles for people with disabilities as they make their own choices in in their homes, workplaces, neighborhoods and associational lives.
This is an informative and practical book that would be an excellent addition to the libraries of teachers in inclusive classrooms, parents, and those working in the field.
We expect a great deal from those who support our citizens with disabilities in their daily lives, and this book is a welcome and respectful addition to the field.” (Barbara R. Trader, MS; Executive Director, TASH: Equity, Opportunity, and Inclusion)
We have a wonderfully diverse anthology of academic pieces and an ABC book showing people with disabilities taking part in community life, and… but, I digress. To find out about our other publications, your readers are welcome to visit our web store. Our contact information is also there, should anyone have any questions or comments.
As far as our plans for the future: Spectrum Press will continue to publish two to four books per year. Right now, along with a couple of other projects, we are working on a delightful children’s storybook by a self-advocate writer who is also doing all of the original artwork. It is the story of a community of woodland animals who all work together, each using their unique skills, to put on a big end-of-summer party. It is an inspiring story of inclusion for kids of all ages.
We welcome submissions, but we are a very small enterprise, and just so that people are aware, we receive a lot of quality work. Our goal is to read and respond to all submissions, but the process takes time. As far as our selection process is concerned, I mentioned our focus already, but let me just say, although we do not discount that many people have gone through some very challenging times, our intent is to publish writing that provides hope and inspiration to people with disabilities and those who care about them.