Tag Archives: job

How functional am I?

I’m told I’m high functioning.

As far as I can tell, mostly this means that for short periods of time I pass for normal. When I’ve saved up my spoons and I’m not overloaded, if a random stranger glances at me they don’t see anything unusual. So, to the people who use phrases like “high functioning” and “low functioning,” I’m high functioning.

Now, intellectually, I know that’s full of bunk. I know that “high functioning” means “we’ll ignore any help you need” and “low functioning” means “we’ll ignore any strengths you have.” I’ve seen it in practice many times, and I’ve had people deny my difficulties or insist that I’m just “quirky” based on nothing more than their idea that I’m “high functioning.”

But turns out that as much as I know this way of thinking is incorrect, as much as I understand that functioning is not linear, it turns out that it has burrowed into my brain deeper than I ever realized. It pops out at me and leaves me struggling with… I’m not even sure what.

A little backstory – I was diagnosed as an adult. People can make some very inaccurate assumptions about my childhood when they hear that, though. Basically, by the time I got into kindergarten, it was unmistakable that something was wrong with me. However, no one knew what. Long story short, things tended to jump between trying to figure out what was going on, and just treating me as though my failings were my fault and I’m just weak. I know now what was going on and why, but those messages don’t go away so easily.

Now, a little while back, after a lot of work and many incremental steps, I reached the point of being able to go grocery shopping on my own. It was a huge accomplishment for me and I’m glad I’m able to do it. This involved a lot of working both on driving independently (very difficult both in terms of sensory input and real-time processing) and on being able to handle the intensity of the grocery store on my own long enough to get the groceries.

This is where it gets rather shameful. Where my rather treacherous brain betrays me. The grocery store I go to employs some people who seem to have intellectual disabilities. They are definitely not the kind of people who can pass for normal the way I can. If someone who rates people by functioning came on by, they would surely say that I am higher functioning than some of those employees.

Yet those “lower functioning” employees are holding down jobs that would send me into screaming meltdowns within a matter of days if I tried to do them. And sometimes, when my brain is being uncooperative, when all that inspiration porn I’ve been exposed to and all those messages of moral weakness I grew up with are echoing loudly in my ears, I wonder why they can do it and I can’t. I think I must just be weak or lazy the way people insist people like me must be. I’m failing to “overcome” my disability the way we’re supposed to in order to be worthwhile.

I know that this is wrong. I know that there are many, MANY errors in my thinking. I know that functioning is neither linear nor one dimensional. I know it’s only reasonable for people who are weak in ways that I am strong, to also be strong in ways that I am weak. I know that this is how it works. But sometimes, on a gut level, it seems I forget.

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Ice Breakers: An Open Letter

creative commons image by williamarthur on flickr

Dear World at Large,

We’ve been slowly getting on a little better over the past few years. I’m learning to navigate your tricky social world and you’ve been learning that I can be pretty cool sometimes.

Sometimes, though, we just don’t seem to get along. I do really try to live by your rules and your standards of how people are supposed to be, but sometimes I really need you to take a few steps towards me. This is one of those areas.

Stop asking people about their job as an ice breaker!

Seriously. I am not very good at making conversation with strangers in the first place, but this ice breaker really does not help. Not everyone works, not everyone has a job that they are happy with, and not everyone has a job that they can talk about. I know you want to think that it’s good enough since it works for most people, but it can be seriously alienating for those of use for whom it does not work. It is also an area with a lot of social baggage stuck onto it, and it can be expletive difficult to avoid feeling shame if you happen to be one of those people who does not have a job.

Sometimes people ask what sounds like a more general, “what do you do?” type of question. I would like this if it were actually general. Then people could answer with their job, or with their hobbies, or with their advocacy, or whatever else they could talk about in terms of how they spend their time. Sounds great, right? Except that I have learned that when people do this, they are not actually meaning it as generally as it sounds. They are still asking about a job.

Story time! Once, I was chatting with a stranger and she asked me the “what do you do?” ice breaker question. I chose to answer in terms of one of my hobbies, so I said that I crochet. The rest of the conversation went about as follows:

Her: Oh, you crochet for money?

Me: No, it’s a hobby.

Her: But what do you do for money?

Me: Nothing.

Her: But how do you get by? What do you do?

Me: I’m a hobo.

Eventually a friend of mine stepped in and said that I am “between jobs” and the interrogation ended. However, this should never have happened in the first place. If I choose to answer what I “do” with a hobby, please just go with it. Why is it so important to pursue the job question, even when I have clearly chosen to not answer? What is so important about knowing how I do or do not make money?

A similar thing happened another time when I was chatting with a stranger. The usual “what do you do?” question came up. This time I was blunt and simply said that I do not have a job. I was then subjected to yet another interrogation regarding why I don’t work, and am I looking, and how hard am I looking, and how long has this been going on and honestly, why is that necessary?

This is one of the reasons why I rather dread talking to strangers. The pervasiveness of this question is rather frustrating for me. I already find it difficult to talk to people I don’t know, and I already find it difficult to cope with my jobless status. Combining the two into one horrible interaction just comes across as unfriendly.

I don’t think I’m asking something terribly difficult. It can still be a job question for all those people who want it to be a job question. Just please let it be a hobby/other things I do with my time question for the people who need it to be. If I choose not to answer in terms of a job, please just go with it. Be ok with it. It can still be an ice breaker if two strangers find themselves talking to each other for whatever reason. In fact, it will be a better ice breaker, because it will no longer be excluding people who are disabled and don’t want to talk about their medical status, or otherwise don’t have a job and don’t want to be interrogated about it. It’s not friendly, it’s not nice, please stop.

Thanks

me

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Filed under that's not helping