When I’ve told people recently that I am quitting my 9-to-5 government job, the first question out of their mouths is “what’s next?” The focus is immediately on my next venture, how I’m going to earn money, who I’ll be working for, what my new hours will be. When I share that I’m taking some time to focus on my wellbeing and home life, I get about a 50/50 mix of encouragement and worry or pity. The majority of my peers and acquaintances have been working full time or multiple part time jobs since high school, and the notion of not hopping right from one position to another feels so foreign.
So much of our identity becomes tied up in our jobs. “What do you do?” is one of the first questions we ask people we meet, and so much of our country’s culture and social norms are tied up in how “white-collar” or “blue-collar” one is. What does it look like, then, when you simply step out of that line and set yourself adrift for a while? How do people view and treat you differently when they cannot immediately categorize you by vocation, and how do your interactions with the world change once the 9-to-5 constraints on your schedule are removed?
Our whole lives we are told that we have to go to school so we can get good jobs and pay our bills and support ourselves. The US-centric ideals of independence and adulthood are inseparable from a certain expectation of self-sufficiency and ability to see to your own needs. Kids are pushed past their limits and concerned caregivers are sold hours of services based on the idea of preparing kids for “the real world.” Most of these interventions focus on molding the child to their environment rather than exploring how to adapt and accommodate a lifestyle that will be sustainable.
As a grade school student, it starts early with attendance awards and long, endless days of in-person school participation. There are few allowances for children with chronic illness or mental health struggles. In college it continues with a laser focus on choosing a major that will land you a good career. Then come the unpaid internships, the networking and building a reputation, the side hustles and extra certifications to make you stand out. All of these things assume, and in some cases require, a baseline capacity that so many of us just do not have.
Perfect attendance is not realistic for people with chronic health issues, family instability, unreliable transportation. Choosing majors solely based on future careers can kill motivation and focus for a student who is primarily driven by passions and interests. Unpaid internships are impossible for those who have big bills to pay, and networking can feel like a battle zone for autistic adults who struggle with allistic-style socialization.
Is it any wonder, then, that the rate of unemployment for autistic adults is so high? I have seen references to upwards of 80% of identified (diagnosed) autistic adults being unable to hold full-time jobs. Those numbers are definitely skewed; people who seek diagnosis or are diagnosed early in life are those whose challenges are harder to mask and whose quirks are more likely to impact how they move through the world. But even those of us who are called “high-functioning” face significant barriers compared to NT peers, which is a big part of why functioning labels are trash in the first place.
So if the capitalist, ableist, and neurotypical measure of success is your ability to work a job, support yourself, and independently take care of all your needs, what would it look like to redefine success for the divergent person? When you talk to disabled, neurodivergent, under-resourced people, how would they define success for themselves, and how can we reconcile the two worlds?
I would not dream of speaking for any community as a whole, much less marginalized populations. While inhabiting online and physical community spaces, I have consistently heard mention of stronger community support, removing the stigma of codependence, increasing accessibility, enabling growth, making room for rest, confronting systemic injustice, and living the ideal that everyone is capable of learning.
I believe wholeheartedly in all of this, and I am working now to really figure out what my own, adapted version of success will look like. While it is still a work in progress, here is what I’ve figured out so far:
-I need the freedom to create and adapt my own schedule to honor my body’s needs. My energy, pain, and mobility levels fluctuate a lot day-to-day or even hour-to-hour, and similarly my social battery, verbal ability, and sensory sensitivities can be very dynamic.
-I want to engage in labor that is fulfilling and improves the lives of my community and family. I am a passion-led individual, and know that my brain is driven and motivated by my special interests. If I love and believe in the work I am doing, and can also feel good about supporting others like me, I know that I will be a lot less likely to become overwhelmed and disengaged.
-I need to be able to structure my life and routine around my neurotype, instead of trying to make my life fit the neurotypical mold. I want to set aside systems, habits, and rules that are not truly helpful or that are based in shame. Even if my life looks odd or incomprehensible to someone on the outside, I don’t want to waste energy and executive functioning on upholding systems that create more harm than benefit.
-My ability to make an income cannot be a direct product of, or dependent on, systems that oppress others. I worked in child welfare and small government for years hoping to make a difference, but at the end of the day I cannot change an entire societal machine. I can, however, refuse to work directly for those who profit from the misfortunes of others.
-I want to be deliberate about including and incorporating community support into my lifestyle. I want to live the example of no one trying to be an island, and learn how to build and curate an immediate circle of people who believe in community care. So much of the ND struggle is just not having the capacity to meet all the expectations of the “independent adult”, and reaching out for support can make a world of difference.
-I will mentally and emotionally separate my self-worth, and that of others, from the idea of productivity. We all deserve to live in peace and support simply because we exist, and we do not need to earn rest, love, or acceptance.
I don’t have everything figured out yet, but I do have hope that I will be able to carve a little niche for myself in my city and larger online community where I can model and really live these ideals. If I can live in a way that honors my values and my own needs, I will consider that a success. I’d rather cobble together a less-certain income from a handful of part-time gigs I love than to drive myself into the ground working a schedule that leaves me completely burnt out, so we’ll see what that looks like in the next several months! Stay tuned to learn how all this unfolds for me, and subscribe so you can be sure to never miss an update.