How People with I/DD Shaped My Career
As a child and teenager, my hope was to one day be a doctor. When I fell flat on my face with Physics in 11th grade, earning a 55 one quarter when I was a straight A student my entire schooling, I realized such a dream was likely not for me due to an onerous set of spatial pre-requisites (some of which I might mention are unnecessary if one does not wish to be a pharmacist nor surgeon). But I digress, when I entered college I chose a trajectory to become a Spanish teacher, owing to my fluency at the time, love of teaching, and a desire to make my 9th grade Spanish teacher (one of many substitute mothers in my childhood) proud. When workbook exercises began to bore me to tears, I decided on another, less predictable major: English. No one in my high school nor family would have predicted this because I had trouble reading. I don’t mean I was dyslexic or anything like that, but I had a compulsion to re-read sentences over and over and often not absorb any of what I was reading. Much of this was due to the turmoil within my home, but I’m sure (given lots of examples within my extended family of smarts paired with OCD) that some of my history of anxiety is genetic. I could, if very focused, read through and absorb, but I aced AP English by reading the first 40 pages or so of a novel to get the sense of character, plot and place, and then asking my friend Robyn what happened at the end. I sometimes didn’t even have patience for the cliff notes. I know, and I’m a writer. So I chose English as a major actually to challenge myself to focus, read through as much as I could, and really appreciate the arc of stories. And it, for the most part, worked. I excelled in my literature classes, was able to read much more much more quickly, and all of this made me a better writer. It also made me fall in love with stories, but not-unfortunately-reading. To this day, reading is not my favorite pastime, unless it’s a medical or public health article. But tell me a good story, and I’m all ears.
That backstory is important to what happened next. I left college unsure of my direction. I thought maybe I’d become an English teacher or professor instead, but a frightening in-service from the English department on the job market outside of public school-which I was told directly by one of my Education professors I’d fail in because my lesson plans were “too creative”- made me go in another, more general direction. At the end of the day, I knew I loved helping people as much if not moreso than stories. I signed up for an MSW program which I also exceled at, and began helping people. My first internship was a unique one in a dental clinic providing psychoeducational support, and my second on the Seneca reservation doing play therapy with children from households with substance use and/or abuse. Unfortunately, I left right before my last internship due to ethical concerns within the program. As a very young person, I didn’t think through what that would mean for my career, but it meant I was deep in student debt, without a clear path forward, applying to any job helping people that seemed halfway decent. I landed a job as a Self-Advocacy Facilitator for people with developmental and intellectual disabilities. My role was to facilitate their meetings, political and civic participation, and foster their independence. When I walked into my first meeting, the President of the group, Larenz, looked me in the eye and said, “Your job is to make yourself irrelevant. We want to learn how to do this ourselves.” The rest of the group stared at me intently in silence, clearly in agreement with her. Talk about a welcome committee! I would later learn about their frustrations with the agency I worked for, which were to be fair, pretty standard-nothing egregious, but culturally misaligned all the same.
Strangely, the challenge did not scare me nor turn me off from the work. Instead, it supercharged what I had assumed would be a boring, easy job. Oh, I thought in my ableist mind, I’ll help some people out, get paid for it, and go home needing the intellectual stimulation I thought I would not get from 9-5. Thankfully, I would go on in that job and more to work with people with Cerebral Palsy, Autism, Prater Willies, Down Syndrome and even profound intellectual disability who not only challenged me emotionally, but mentally as well. How, for example, could we get “James” we will call him to live into his dream of being on his own, when he was quadripalegic and nonverbal? James, by the way, had been in Willowbrook, one of many horrible institutions people with I/DD were placed in until the de-institutionalization movement of the 60’s and beyond, and the one Geraldo did an expose on. How could we bring “Annette” to a Self-Advocacy Conference where there were open buffets, when she had Prater Willies, a disease that makes someone feel constantly hungry? Why was “Charlie” living in a group home and earning pennies for counting pens in a “sheltered workshop” (ugh, those places) when he was able to voice his preferences-pretty loudly I might add-on a regular basis, and was physically able-bodied? These were logistical, philosophical, and political questions that needed answers, and pathways worn by stories. Each of these individuals were able to live more fully into their dreams through the Self-Advocacy group.
During my two years with that group, I began to read everything I could on the approach of “Nothing About Us Without Us” and fell in love with it so much that I decided I would take it to another field I was very interested in due to my family’s struggles with anxiety and depression-mental health. Later in my career, I would take that same approach into my work in harm reduction. Let me say, both movements have a ton to learn from those with I/DD. And I still did, too. While working in mental health, I took on a very part-time personal care aide job with a young man with Cerebral Palsy who was enrolled in a Bachelors program. I did his dishes and taught him math. He taught me all about the disAbility rights movement and once and for all rid the “R” word from my vocabulary. He also went on to get his MBA and now runs an organization which promotes self-advocacy. I am proud to say that my sister, who lives in the same town, is now involved in the movement as well, after having my niece Maria who has Down Syndrome, and runs an organization which provides respite to caregivers. My niece, who was born with the often deadly West Syndrome, has regularly beat odds stacked against her, including West Syndrome, and is treated as an important and equal member of our family. She’s in high school now and I can’t wait to see how her life and career unfolds.
My journey with people with disabilities, particularly developmental, has indelibly shaped my career, my heart and my mind. Since that first job out of college, whenever I am tasked to sit and help someone in a professional manner, Larenz’s statement burns in the back of my head, and I ask myself: how can I make myself irrelevant? In other words, how can I provide support, guidance and information that will allow someone to better care for themselves and/or direct their own lives? I don’t wind up irrelevant for everyone; I am fortunate to call some people I have worked with friend, including Larenz. Fun fact: the Self-Advocacy group I worked for in my early twenties is still running 20 years later, by itself. It only calls on the “abled” as aides. And that was Larenz’s doing. I, also, have found an aide for reading-Audible. How wonderful that would have been through my schooling!
Whenever and wherever I am blessed to lend a hand, I try to remember, to be of service, including through leadership, is about the person being served, not me. Each of us has unique needs, challenges and strengths; there is no cookie cutter way to be in relationship. Helpers and leaders, therefore, must nurture their own education, humility and curiosity.