“confidential medical information;” unintended impact

Well,

You know, how my last entry was a cryptic hint to myself to look in my hard-copy journals for what I wanted to express?  I got it out on paper last night (or is that two nights ago, now), and …I think it’s relatively OK.  I worked in one of my Art journals…which, by the way, I actually looked through, tonight, and was highly impressed with what I thought was quotidian or uncreative, at the time I made it.

But as regards what I didn’t talk about last time:  this has to do with my recently having had to take a short course on how to avoid outing people who have confidential medical conditions.  This includes accommodations for disabilities.  Those of you who have been following this blog for a while, know that I have an invisible disability, which I have had accommodations for before (at least, until I got capable enough to do what I previously felt I couldn’t).

So I have been on the wrong end of “why isn’t she doing her job,” and people feeling like my supervisor was playing favorites and that this was why I got “special treatment,” when what was actually happening was that I was having difficulties they probably couldn’t fathom, and needed temporary accommodations to avoid major stress.  Stress is actually a really big thing in my life, as it probably is in most people’s lives; the difference with me is that stress can trigger symptoms, which can be severe enough to impact me outside of (and at) work.

I might not have to say this, but my illness is (categorically speaking) relatively severe.  Though I am high-functioning, currently relatively stable, and on medications to control my symptoms, I might not be able to hold a job without those medications.  Without treatment and counseling, there is the possibility I wouldn’t even be around, right now.  Getting needled at work on a daily basis was also one of the things that has caused me to miss work in the past, because I didn’t feel I could handle the stress of abusive co-workers without breaking out into tears or losing control.

In any case, the training had to do with the illegality of discrimination based on medical conditions, and the fact that supervisors are barred from disclosing any information about these conditions to the rest of the workforce.  On top of this, they’re required, where I live, to grant reasonable accommodations if it doesn’t cause an undue hardship.  This creates a little extra pocket of difficulty, though, where it seems to co-workers that the bosses are playing favorites because they aren’t appearing to treat each person “fairly” and can’t disclose that what they are doing is following, “from each according to his ability; to each according to his need.”  (I forget who said that, by the way.)  Then it falls on me to disclose or not — and why would I do that to someone who is hostile to me to begin with?

I’ve been relatively open about my disability status on this blog.  Granted that no one here knows who I actually am.  The issue I had been having last night is whether to be honest or whether to shut down.  I just wasn’t in a place to talk openly, then, though I wanted to.  In particular, it’s kind of an odd place to be in, having a (relatively) invisible disability and knowing that there are tons of people whose disabilities are visible and not apparently “secret.”  The other side of that is that many disabilities which don’t show on the outside are overly stigmatized and feared.

I’ve chosen to be open, at least here, because I recognize that the factor of my illness (which will never go away, so far as this one life is concerned) impacts all parts of my life, right now.  I’m lucky in that I have the skills to be able to express what I can, I have family to support me, and I have a competent team caring for me.  In that, I’m relatively privileged among people who share my condition.  It could easily be much worse.  I am, in effect, positioned to be an advocate.  As a creative, as well:  it’s difficult to utilize one’s full creative capacity when one has certain things one cannot express.

What the training I went through had the effect of expressing to me, though, was the idea that having a disability was a bad thing that no one should talk about openly.  I know this isn’t the case; I have disclosed to co-workers before, but only when I had the need and knew that I was taking a risk…with someone whom I gauged would likely be OK with it.

It feels slightly similar to coming out with any other intensely personal information, like my experiences with harassment in secondary school, or my sexual orientation.  These are things that no one really needs to know, in a work environment, but affect me and my life fairly profoundly.  When items like this are disclosed to safe people at the right time, it can (oddly enough) build rapport as the person who receives the information, feels honored that you trusted them and felt safe enough to disclose.

It doesn’t work this way all the time, however; you have to gauge each disclosure individually, and — just from experience — don’t trust appearances or the hope (or assumption) that you fall into the same category as someone else, to mean that they’re safe.  I have made this mistake far too many times.  Sometimes, someone who has no idea what LGBT means will take a disclosure of being non-straight, better than a person who seems gay-identified, for example.

In essence, though, the difference between writing anonymously in cyberspace and disclosing to people you have to see and work with every day, is major.  My fear, though, and it may be legitimate or not; is that someday I will no longer be anonymous, here; and then what do I do with these postings I have created and the people who have come together around me knowing this about me and accepting it?

I realize that the Americans with Disabilities Act was passed a very long time ago, when one could be fired just for being friends with someone in a wheelchair.  At that time, maybe fear of even being suspected of having a disability was strong; as it could easily affect one’s livelihood, and there was no legal recourse.  Right now the situation is still messy, obviously, but at least there are some protections.  The protections are so recent, though, that while I was in University the first time, my parents feared the legacy impact of my disclosing an illness to my University’s disability resource center.

Of course, though, at the time, they didn’t know that I might need the support, and they didn’t know the profoundity of the impact of this on me.  15 years later, they know much more about how to help me get through life…but that wasn’t without a lot of work, and education, on everyone’s part.

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paintedstone

Haru ("Codey") is a second-year Master's student in Library and Information Science, hoping to find a way to fuse their desire to make the world a better place and to finance their art.

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