(image is of a murky London sewer with an indistinct human figure in the background. I promise the image does relate to this post.)
In my experience, there are three types of people who work in the disability field.
There are those with disabilities who got into it because they want to advocate for themselves and others, who want to give back to this wonderful community, who may have trouble finding a job anywhere else.
There are parents – let’s be frank here, it is mostly mothers – of children with disabilities, who saw a gap in services or supports and decided to fill it, or who took their advocacy for their child to the next level, and the next. This group also includes siblings, cousins, other family members of PWDs.
And then there’s the third group, who stumbled into working with and around disability and disabled people because they took a class in college and liked it, or volunteered with X organization, or met a kid at church and wanted to help, or for whatever reason decided that disability services of some type would be their chosen career.
I was in a group yesterday and it emerged that a woman in said group had come to disability via the third route, and immediately, did she get accolades or what.
“I really appreciate what you do,”
“I mean, when people without any connection -,”
“It’s so admirable.”
My stomach turned sour then. I looked at the woman. She had not rescued any kittens from a burning building. She had not invented new vaccines or stopped a war or done……or done anything heroic or exceptional at all. She just…….chose to work with disabled people.
The logical conclusion that I reached was that all the people admiring her thought that working with me and with people like me was so bad, was so difficult, that she must have some extra-special quality that allowed her to do so. Because why would ordinary people ever choose to work in such an unforgiving job?
Please pretend I’m Amy Pohler here when I say REALLY?
You know who I think is heroic? People who run sewers, and who deal with sewage all day, and ensure that we have clean drinking water and that what goes down pipes stays down and who unclog the massive clogs in huge city sewer systems. They deal with bacteria and germs in the infinite, they deal with rats and bugs and body parts and throw up and probably alligators – I mean, WOW. To do that all day, and keep coming back? THAT is fucking heroic.
Or urologists. You know what urologists do all day? They deal with pee. Or gastro-enterologists, who deal with poop. Most adults spend as little time as possible thinking about either of these things – we train kids to use euphemisms like wee-wee and b.m. – we as a society are incredibly ashamed of these things that our bodies produce – and these doctors, voluntarily, stick cameras up our bums and look at smears of it on microscopes, to make sure that people are healthy.
If that’s not heroic I don’t know what is. Except for maybe being the camera.
When I call these people heroes, what I am saying is that their jobs are harder than most jobs. They require more skill, more education, more sweat and concentration than your average job. They also require a body that does not throw up every two seconds when dealing with things like sludge and sewage and urine and vomit.
But last time I checked, the majority of jobs in the disability field (personal care excepted, and even then it’s usually just one person’s caca, not a whole city’s worth) do not require dealing with bodily fluids. They require concentration and education and hard work, but no more so than an accountant or architect or anteater-zookeeper requires. Maybe a touch more empathy? But lots of jobs require that. I don’t know.
I do know, however, that I do not particularly admire these people, and I do know that when our society admires them just for doing their jobs, it is basically saying, WOW, we’re messed up.
Because this idea is not just wrong, it is damaging on both a personal and on an economic scale. This idea that people who work, not just in the disability field but in fields like childcare, social work, teaching – are somehow intrinsically motivated and have a heroic bent, it causes us to value their very real, very physical, work less. A lot less. And they get paid a lot less.
This relates to the idea that because someone enjoys their job, they should not get paid at all for doing it. There is a lot of unpaid labor that goes on in various circles, but I am thinking specifically of the disability world because, well, that’s where I do my own unpaid labor. As a writer, I have been asked to contribute to various publications and anthologies where I will not see a penny of profit. For most of my life, I did this without complaint. The exposure and the thrill of seeing my name in print was enough reward for me. However, in recent years I have started to say no more often. I have chosen to give my writing to only two or three selective places; for everywhere else, I ask for payment.
Last year, someone wanted to, as they said, ‘pick my brain’ about a business they were starting having to do with autism. Certainly, I would be glad to, I said, and then quoted my hourly rate. “Well, I’ll just ask someone else, then!” the person said, and went off in a huff, astonished that I had the gall to ask for money for a service I provided.
I have had occasions now to get paid for the disability advocacy work I do. It is usually not much, just a stipend, really, but somehow, when money enters into the equation, the whole situation changes. I am not just a volunteer. I am not just another out-of-work disabled person showing up to a meeting because I have nothing better to do. I am a professional. I am not invited to be a guest at the table but a vital part of the discussion. I had one such meeting this past week. It was indescribably joyous for me. I left the meeting feeling proud and competent and equal.
Yet, no one would ever call me a hero for the work I do, because I am disabled. My entry into the disability community was automatic. When someone who isn’t disabled and who doesn’t have an automatic connection to the community chooses to do the same work I do, it is seen as heroic. I believe that society creates these narratives of heroism in order to justify to ourselves the economic hardships we force people who work in ‘hero’ fields to undergo.
The fact is that people can love their jobs and they can love the people in their jobs. Childcare providers undoubtedly love their charges in a way that I doubt a graphic designer loves their computer. But love doesn’t pay the bills, and the emotional labor that many fields require is greatly undervalued. This is why the idea that you need to be a ‘special’ person in order to work with people with disabilities is so very wrong on all levels. It devalues both the people being served and the person serving.
I heard a story once about a guy in London who had to break up a ball of grease in their sewer measuring many feet across or risk the entire system breaking down. In fact, right now, many sewer systems in the US and Europe are about 100-150 years old and are steadily crumbling and decaying. The men and women who ensure that I can continue to use the bathroom in peace and not have scary alligators and things come up the drain? They are heroes. Make no mistake. They are heroes just as a teacher’s aide working with autistic children or a self-advocate visiting a legislative office or a nurse in a hospital is a hero. Yet for some weird reason, our society has decided that all of these works of emotional and physical labor are worth different amounts, and some are worth nothing at all.
It should be noted that I have absolutely no answers to any of the questions I raise here. I have no solutions. I only have myself and my keyboard and screen and my rather annoying inability to ever shut up.
Work is work is work. Sorry, teacher’s aide, you are not my hero. I’m saving that title for the people in the sewer drain.