Never on my own

In my observation, there are only a few acceptable narratives when it comes to disability and independence, and I don’t like any of them.  Everyone seems to favor “The Fighter”; overcoming challenges and working to do things nobody thought possible. Many other bloggers will say the same.  The truth of the matter is when I was a “fighter”, it was in all the wrong ways: lots of emotionality and stubbornness, very little grit. More passivity has meant I have gotten along better with people, more dependence has meant fewer and less severe life choices. Although, one could argue that I am setting myself up very poorly for the future: by clinging to family, working a low paying job with few translatable skills, and receiving checks from a government support system seemingly destined to go bankrupt. I would counter by saying that without these things, which allow me to enjoy the present in ways I have struggled with as an adult, I would be trying desperately to not have any future at all.

An increasingly popular narrative is “It’s Okay to Ask for Help.”  This, I think, is about radical acceptance, in a sense, and while closer to my reality, it doesn’t completely work for me either. For one thing, unless your intellectual disability or mental illness is so severe that you need to live in supervised care (and to be accepted in this day and age, those have to be pretty extreme), society still doesn’t believe this.  What people really mean is “It’s Okay to Ask for a Little Help at the Most Critical Times, in Very Specific, Non-Boundary-Crossing Ways”. If you’re lucky, a friend will let you crash with them for a few weeks or maybe months while you “get back on your feet”. If you’re looking for something long-term, especially if you have habits, quirks, and moods to manage, good luck! “It’s Okay Not to Be Okay”, provided you don’t act out in the wrong way.  Gee, thanks for giving me permission to suffer calmly and methodically, if not in absolute silence! Every time I have tried to accept that things are a certain way, something changes. There were parts of me that I wasn’t supposed to be able to change with respect to my autistic brain, and habits that seemed to just change on their own. There are things that are supposed to be under my control with respect to my physical and emotional reactions that I haven’t begun to figure out, and might as well be a permanent part of me.

So, if you are feeling scared and need a rousing speech about taking control of your life, it would be hypocritical for me to be the one to give it.  If you are proud and independent and need permission to not be strong once in a while, I’m not sure I’d be the right voice for that either. What I am here to encourage you to do is to find your right blend of autonomy and structure.  Back when I was on track to be a teacher, this blend was my holy grail. I searched far and wide for a situation that would let me do some curriculum design, because I found strict book teaching not only oppressive but a waste of my creative talents, as well as a backbone, so that I didn’t feel completely adrift and clueless (as I was asked to teach elementary schoolers in South Korea). Being a grad school teaching assistant was as close as I got, and it was decent at satisfying both needs.  I have come to read things that would suggest this is a major balance issue for many professionals, where people often either feel micromanaged or utterly without support. At my job, I have struck a decent balance: I am lucky to have a responsive HR department with whom I can interact without fear (this is a relative rarity, as I understand it). As well as the type of direct supervisor, who I feel I can come to with certain issues when I don’t understand protocol correctly, or my autism means I have trouble reading between the lines (yes, all rules and policies are important, but in reality some bear more weight, or are more strictly enforced than others.) It helps to be able to ask directly how to prioritize my energy.

I have never been one to assert that dependence is a dirty word.  There is nothing “bootstrappy” about me. I would even go so far as to argue that some things that are bad mouthed in today’s society–over reliance on parents, having others help solve your problems, reducing responsibility–were crucial to certain aspects of my growth, and necessary to my survival and ability to maintain interpersonal relations. And yet, even in situations of dependence, finding a blend of structure and autonomy is key.  There were some tense times when I most recently came home to live with my parents. I didn’t want to impinge on their retirement, but I didn’t feel capable of supporting myself. I needed to maintain my own sanity, but had to be respectful of theirs. It helped when I finally got myself into a low-conflict relationship with a woman who enjoyed having me around–I was thus able to give them space at the house while still having security. But my girlfriend rents an apartment, and I couldn’t spend all my time over there either.  With both of us on government benefits, I would not be able to suddenly live with her, should something happen to my parents. Because of this, I am now in a situation I did not expect to be in again for quite some time–living in my own apartment. In the past living alone has not been healthy for me, but I am less alone this time: I still have my parents (for now), my girlfriend, my mental health team, and a much thicker support network in the city I grew up in, than I did when I lived out of state.

There is a lot that is scary about public housing, but at the moment it is much safer and more hygienic in Madison than in many cities, from what I hear.  It is rent controlled, which is a luxury many people don’t have. Some people are even excited for me, although I get the sense they value a certain type of autonomy more than I.  I am in a place where security and peace of mind are more important to me. I don’t know that anyone can get those things more than temporarily, but for now, I have found the right blend.

Edited by: S Tabarias