(image of a wood surface with a cup of coffee, notepad and pen, and laptop computer on it.)
It’s an ever-awkward question that comes up at parties, church, community events, game nights, the library. It’s a blank line on a doctor’s form, an awkward moment in a conversation, a sharp stab to my gut and to my soul.
It’s a simple query, is what it is. I’m obviously an independent adult, so I should obviously have a quick answer to it. “So what do you do?” people ask. “Occupation______________” reads the form. It is a drop-down menu on a computer form with spots for ‘homemaker’ ‘retired’ ‘student’ ‘employed part time’ ‘employed full time’. It is me, never fitting in, never knowing exactly what to say. People want to know how you fill your time. They want to know what it is, exactly, that you do.
And I never know what to say here, because in my mind, I do…..nothing.
My occupation? Well, the closest that I can get to an answer is that I’m a professional disabled person. And though there may be nothing inherently wrong with me or with what I do with my time, I am unable to escape my deep feelings of shame about it.
The basic fact is that I do not look like what somebody expects a disabled person to look like. I walk normally, albeit more slowly, with a bit of a gait problem. I speak ‘normally’, although I can sometimes be rude and at other times lack speech. I don’t use a handicapped placard or a service dog or mobility aids. I’m not hard of hearing or blind or anything like that. Yet I’m disabled just the same. My primary disability is an autism spectrum disorder and numerous mental health and learning disabilities. To this I have added in recent years chronic pain and back problems. What my disabilities mean to me personally is a long and rambling journey that I’m not inclined to take you on at this moment. What they mean for me practically is that I receive state and federal benefits from social security and that I survive on that and the very-occasional consulting or writing gig.
“What do you do all day?” a student asked me this past spring. She was interviewing me for a class about developmental disabilities at a nearby college. I told her. “Oh, so you basically do what everyone else does on the weekends and in their spare time!” she concluded.
I winced, and I felt lucky, then, that as an autistic person my emotions generally do not show on my face, for at that moment, I felt utterly devastated. Somehow, I got through the rest of the interview and showed her the door before the tears came. In one sentence, this kid – for she was a kid to me – managed to strike at the core of all my insecurities. Because if it takes me a whole day to do what everyone else gets done on weekends and in their spare time, I must not be very efficient or valuable. I must be practically useless – or at least, that’s how I felt.
What do I do all day? In all honesty, my routine is rather boring. I wake up later than most people, and it takes me an hour or two to get going because I need to wait for the combined effects of caffeine and painkillers to kick in before I’m ready to do anything. I have 2-7 medical appointments a week – physical therapy, acupuncture, psychiatry. I attempt to exercise a few times a week and to socialize. I go to library events, serve on a church committee and my city’s disability commission. I am the backup childcare for a friend. I bake for myself and for others – I’m the designated bringer-of-cakes to social gatherings. I investigate new doctors, new treatments, for my pain. I spend an awful lot of time on hold to my insurance company or other places. I write blog posts and letters and annoy facilities managers about access at hospitals and museums. And I rest, because all of that stuff is utterly exhausting to me.
I know, in theory, that what I do has value. I know, in theory, that how much money I make is not actually connected to my own worth as a person. My religion’s first principle is that there is an inherent worth and dignity in all, and there’s no qualifier for that all. I am all. I am included. I shouldn’t be ashamed…..and yet…….
“What do you do?”
I walk to a nearby park and take pictures at the end of the day. I see people walking home from the bus and the subway, and I notice, especially, the women my age. They look so amazingly put together, in dresses and boots and scarves just so, with shoulder bags and lunchboxes and Bluetooth headsets clipped to one ear. I don’t know what they do, but I know that most of them probably spend the day in a building doing……….something……..that earns them money, that pays for their health insurance, that builds up society and enables people like me to simply live.
If my soul were a color at that moment, it would be the dark-green, shiny-jade color of poison-ivy envy. Like poison ivy, the jealousy I feel burns my soul and makes me want to leave my skin. It isn’t right, it isn’t good what I feel. I know that. But I feel it just the same.
People always have this idea of what poor looks like. “Looking like a homeless person” is my mother’s way of saying, (despite years of my protesting this awful phrase), that someone’s clothes are ill fitting, that they are dirty, unkempt, not put together. It has never occurred to my mother that a homeless person can hold down a fulltime job yet sleep in their car, or that not all of the people standing on the roadside holding signs are necessarily unhoused. Looking poor, in the WASP world my mother comes from, means looking a certain way – neat, clean, unobtrusive. Despite the fact that 95% of what I wear is from thrift shops, I am careful to groom and present myself in public so that I don’t ‘look poor’ and thus, get more respect from those who run things.
From what I’ve read, Native American tribes, more often than not, valued disabled people as white people did not. Unfortunately, the white people who came and colonized this land I now call home often saw disability as a curse from their god, and valued productivity over anything else. They were, as every generation has before them, attempting to survive in a world that usually required quite a lot of hard work to do so, and therefore, hard workers were valued. I might work hard at my life, but I don’t work hard at an actual job for a living, and so I get judged through a Puritanical lens that most white people don’t even know they are seeing through.
For most of my life, I truly thought that if I just worked harder, just changed my attitude, just smiled more, then my big dream of an office job in my field would come true. My learning disabilities and my lack of phone skills wouldn’t matter. I would have business cards with an organization’s logo on them just like my siblings do. I would have a name plate with my name, be listed in the company directory, have my smiling face on an ID card that I’d wear on a lanyard around my neck. I would have an office where I could put up a few photos and tchotkes that are important to me.
I know, intellectually, that these physical representations of productivity don’t actually mean anything. I know that there are plenty of people who will never get any of those things and that they are just as valuable as I am. But I also know that some part of me will never stop longing for them.
I’ve heard many people say how much they despise their work. I’ve heard many say how they wish they could just quit, but they can’t, because of the benefits and the salary, because of their need to maintain their current lifestyle. I wonder if any of those people know how much I would absolutely (but not literally) kill for a job like theirs. I wonder if any of them ever pause in the middle of a long, boring task and think ‘damn, I’m lucky. I get to have lunch in a cafeteria today’ or ‘I have my own mug in this office’.
The world is drowning in sorrow and grief and problems. All around me, people are doing what they can, how they can, trying to survive the fast-rising waters. If I weren’t in so much pain, I could probably work an office job for 20 or even 30 hours a week, but if I ever did that – if I ever earn more than $1,100 a month – my social security will be cut off for life, because I will have proven that I am able to work, and thus, not really disabled. No matter how many liberal politicians we elect, this is unlikely to change, because a fundamental belief of the United States is that if you don’t work, then you don’t deserve to live about the poverty level. Which means that I’m stuck at this level for life. I won’t pass go, I won’t collect anything but the bare-bones minimum to live on. It’s like the ‘jail’ card in monopoly except that I have no chance of rolling doubles or getting a card to go free. I’m a professional disabled person, and this is the best I can do.
Maybe, though…..just maybe….one day….they’ll add another option to those drop-down menus. ‘Constrained by my body, neurology and society into a life I don’t really want’ isn’t a convenient box to check, but it is my life, and it is the life of millions of Americans. It’s about damn time that this was respected as much as any other occupation.