Dreams & Disabilty
We’ve all heard versions of “do what you love” given as expert advice in any given field. It sounds incredibly simple. Feeling unfulfilled in your career? You, too, can live out your dreams in just a few simple steps:
leave your current career path, box of personal belongings in hand, sure in the knowledge that “life is an adventure”
decide that you are going to devote your (former) working time to a passion you’ve always had
finance that passion with any savings that you’ve set aside
follow the advice of “experts” (paid in full) — as they assure you that they, too, were exactly where you are
spend the next months (maybe a year) floundering from one “expert” to another (continuing to pay in full) while you drain your savings
return to the career that you left before this grand “adventure”, much less financially secure, but filled with the knowledge that “experts” tend to over-simplify everything
Sound familiar? We’ve all been there at one time or another in our adult life. Goddess knows that I’ve been self-employed more times than I care to count. There was a time—many decades ago—when returning to a previous career would have been very easy for me. Life has a way of throwing us curve balls though…
Thirty years ago, I suffered a cluster of life-altering changes that left me disabled (PWD) and unable to work in any traditional sense. April 1993 marks the point in my life where who I had been differed greatly from the man that I would eventually become. I had been a social extrovert, employed by a major Canadian national bank, very active in my community, thriving with a social calendar that filled as many nights as I wanted. I was always busy, seemingly running “to” one commitment after another, never at a loss for activity. The events of that April put an immediate stop to all that running as I began to realize I had been running from more important things than any of the activities I filled my life with. I spent the next 2 ½ years investigating, excavating, and addressing what I had been trying to escape.
Glyphs
In much the same way that the triangles intersect and seem to overlap each other, my journey over that period uncovered new ways that fragments of myself would have to find new ways to fit.
I knew that I would never be who I had been, I had know idea who I would become, but I also knew that I had to transform from the inside in order to live a full life.
I spent all of this time involved in intensive therapy in a variety of settings. In addition to healing myself, I also gained invaluable insights into the therapeutic process: different models, theories, and approaches.
This is the point in my tale where others would tell you how their life was transformed by finally “living in their truth”, manifesting their passion, and reaping the rewards of having been through it. That’s not what happened for me. I survived my own gauntlet … and decided that I would pursue a university degree in Art Therapy. I can look back on that decision now—with the benefit of corrective lenses hindsight—and see that I was still putting limits on my creativity, by forcing it to fit into the narrow definition(s) of “therapy”. It took me a further six years of part-time studies (ending in 2001) to realize the career path I was preparing for would likely lead to a repeat of April 1993. Not again; never again.
“I’m going to have to live on this “Disability Benefit” for the rest of my life?!? This is less than one-third of what I’m used to.”
In late summer 1994, I learned that I had finally qualified for a disability pension through the Canada Pension Plan. My monthly take-home income dropped from (pre-gauntlet) of $2K to $550. I was only able to afford my living expenses by augmenting my CPP-D with Provincial assistance, increasing it to about $1100 per month.
It wasn’t all bad. Almost half of my student years was spent in studio, where I reinforced the fundamental foundation of skills I had been practicing since childhood. I discovered a method of drawing that was applicable to any subject, I finally understood how the values of light and shadow influence a piece, I learned the time-tested principles of design and discovered how my own vision consistently broke them. I learned what the “rules” were, and when I could bend or break them in order to create something that is uniquely my own. I can’t describe the … oasis … that my studio classes were in the otherwise unending desert of courses that were based on rote-learning of repetition and regurgitating facts for assignments and exams. In all the psych classes I took (and there were many), there was only one that I thoroughly enjoyed from start to end: Theories of Consciousness. It was the only class where the professor intentionally veered from the standard curriculum in order to give her students the opportunity to apply the basics in our own investigations. We were given the freedom to push-back, adjust, and even create our own proto-theories for Consciousness. I was able to combine all I had learned (in other courses) about how humans learn as a product of brain development and maturity, how memories are encoded and stored, how those memories intersect with general development, and how these thousands (millions) of hidden interactions affect our behaviour. In many ways, this course mirrored the “rule breaking” I had absorbed in my studio courses. I will be forever grateful for the time I took to learn these invaluable lessons—even though I incurred sizeable student debt that remains unpaid over twenty years later.
Scream Reimagined
As you can imagine, 2001 was another huge wake-up call. I had just spent the past six years incurring massive debt (over $25K), pursuing an (Hon) BA / BEd in Psych & Fine Arts, in preparation for graduate studies, that would eventually result in a Phd / PsyD, resulting in my “new career” as an Art Therapist. The problem was that I left my undergrad program—with less than a year’s worth of credits left to complete—because my Psych profs had made it clear that not one of them would be interested in sponsoring my 4th year Thesis as it wouldn’t easily fit in any of the ongoing research. I was “advised” (read talked-down-to) that my focus of Art Therapy, while laudable, was “too new” to objectively study as part of my thesis proposal. In order to continue my studies, I would have to choose an “approved” focus for my Undergrad Thesis, from either 1) eating disorders, or 2) therapeutic models exclusively for women, and then repeat that process for my own focus (Art Therapy) as a “bridge year” during post-grad studies. That was simply not an option.
I had also moved (and changed universities) in 1998 to begin a new relationship. Thankfully, that was a wonderful decision as we are still together 25 yrs later—soon to celebrate our 11th wedding anniversary. The year I moved, my income reduced from $1100 to $600 as my CPP-D income was already “above the maximum” to qualify for assistance in my new province. The fact that my husband has never blamed me for our low household income is a testament to his character, kindness, and support; rather, he constantly reminds me that my creativity is a core aspect of my personhood that he would miss if I didn’t pursue it. He continues to amaze me on a daily basis.
I, however, was unwilling to accept my reduced income. I bar tended & hosted (for tips) in a local LGBT+ bar, I did annual income taxes for a variety of clients, I even returned to bookkeeping for clients. None of these side-gigs was enough to even begin replacing my income, but they did augment it from month-to-month. In 2004, I felt that I was ready to re-enter the working world. I spent 18 months slowly chipping away at the person I had become (the very definition of unhealthy behaviour) in order to fit into the requirements of my job as a Customer Service & Sales Rep. I completely burned out in autumn of 2005 when I realized I was required to lie for 95% of my working day; I had been slowly bringing that person home with me. This had to stop, so I took advantage of our company LTC (disability) coverage. Since 2005, I’ve been on a severely reduced income. My brief foray into working life made it absolutely clear that my disabilities make it impossible for me to work in the traditional sense. The past three years, I’ve concentrated on creating art with the hope that I would be able to earn extra income. Creating art is the one pursuit that 1) feeds my soul, and 2) has income potential. This website is the culmination of everything that I’ve learned about myself, contributed to advocacy for other disabled persons, and created while pursuing those goals. I, long ago, decided that I was unable and unwilling to separate my disabilities and my art; they are too closely intertwined to attempt it.
Over the years, I’ve had friends, acquaintances, and other professionals advise me to … limit … what I share about my disabilities. What they meant was that I should edit who I am in order to be “more marketable”. I fully understand their reasoning. Quite simply put, I cannot. I can’t explain the meaning behind a specific piece without sharing why the subject resonates with me as a PWD. I can’t share my process without also sharing how I have to adjust it depending on which of my conditions is flaring up on any given day. I can’t experience the satisfaction of seeing my art through another person’s eyes without recognizing that their lens is likely quite different from my own. In order to satisfy these edits, I would be forced to lie about who I am, how I work, and what informs my pieces. I tried that in 2004 … never again. Regardless of how financially unsound it is, I must be true to who I am if I have any hope of creating art that is important.
The importance of something is one of the lessons I began learning in 1993; it’s a lesson that I re-learn every single day. Disability requires us to re-evaluate our lives and reassess how we allocate our time, energy, and resources. I have fewer hours, more sporadic energy levels, and far less (financial) resources than many Average Bears. I know this—in my very bones on most days— and adjust accordingly. This means that some days I create art, others I spend on administrative tasks, and others are filled with writing (this blog entry has already taken two full “days”). While I wouldn’t say that I’m “satisfied” with what I’m able to do each day, I have achieved a sense of “peace” balancing my needs with my aspirations. There are days when it feels like an uneasy peace. On those difficult days, I remind myself what was important and take comfort in having worked on those things.
In closing, I’ll leave you with one of the many bits of wisdom that I’ve found in the many DUNE novels—created by Frank Herbert, and continued by his son Brian & co-author Kevin J. Anderson. It speaks, quite eloquently, to life’s many changes and how one responds to them.
“No one is ever completely forced into his position in life. We all have opportunities to take different paths. [PRINCESS IRULAN, Conversations with Muad’Dib]”
