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6:23pm September 3, 2014

Conflicting access needs are real, and not just in the realm of disability.

They started out in the realm of disability.  That’s where they were first described.  One person is severely allergic to a certain chemical (including by scent), another person needs that chemical rubbed on their skin in quantity to prevent dangerous skin breakdown, what do you do if they’re both going to be in the same room?  That kind of thing.

Sometimes there are solutions.  Sometimes there aren’t.

I’ve seen two major response patterns to these situations.  One is horrible, the other is great, and I haven’t seen a lot in between, honestly.  (Okay, the thing in between is everyone kind of being lukewarm and going “huh, too bad, no idea what to do, oh well”.)

Scenario #1:

Everyone involved gets together and decides to find a solution to the problem.  They work out who needs exactly what.  They work out the relative importance of the different needs, and the relative skills involved in pulling everything off.  They try to figure out if there is anyone around with skills that could help solve the problem.  Everyone contributes what they can contribute.  Nobody feels forced to contribute more than they can contribute.  They may come to a solution, or they may decide the two people just have to avoid each other, but they’ve at least made an effort.

Scenario #2:

Both people dig their heels in.  Each one loudly complains that their needs are the most important ones, that the other person is oppressing them, and that the other person doesn’t really have needs at all.  They may even accuse the other person of faking or exaggerating their disability.  Each person gains a following of people.  Each following follows their ‘leader’ to the T.  Soon “everyone (on each side) knows” that the person on the other side is a horrible oppressive person who exaggerates their disabilities for personal gain and doesn’t understand what a serious issue this is.  Communities are torn apart.  Friendships are lost.  Trust is destroyed.  Nothing is ever solved in this scenario, ever.  The most that might happen is a partial solution that involves a power play where one or the other of the main players gets thrown out of the event or socially pressured to leave.

I see a lot of Scenario #2 playing out on tumblr all the time, both in the context of disability and in other analogous contexts.

I’ve got an access need that I am only beginning to realize how extremely important it is:  I can’t be involved in high-intensity online flamewars.  I have adrenal insufficiency – the real thing, the one that kills people.  Even when I had severe, severe PTSD, stress was not as physically dangerous to me as it is now.  Now, stress can trigger something called an adrenal crisis.

I’ll give you an example:  A few years ago I went to an art gallery opening where one of my paintings was being shown.  I spent hours being poked and prodded by hundreds of drunk people with bad boundaries.  Then I went home and, that same week, participated in an online protest against people who wanted to kill their disabled children.  Then I started noticing death hanging around my apartment, which is always a bad sign.  Then I became unable to breathe without using my bipap as a makeshift respirator.  I almost ended up in the hospital.  I could have died.

And all because of one stressful offline event plus one stressful online event.

Those of you who know me, know that my father is dying, my mother could die very easily including just from the strain of taking care of him when she’s too severely disabled to do so, my grandmother isn’t doing well, my parents have been evacuated by fire, I’ve just gotten over meningitis, and I’ve just gotten over aspiration pneumonia.  And I just got dangerously physically ill after getting triggered during a feeding tube change.

This means that getting into Scenario #2 over and over could be deadly for me.

I’m actually in the process of writing up some guidelines on how not to stress me out in online conversations.  Not that it will necessarily change anyone’s minds, but it’s good to have something to point at.

But basically… to get to Scenario #1, there’s some things you have to do.  You have to take the other person on good faith, unless you’ve got a really good reason to do otherwise.  (“I don’t like what they’re doing” or even “What they’re doing is causing me a great deal of pain and distress” is not sufficient reason to assume bad faith.)   You have to assume that they’re basically telling the truth about their disability and what they’re able to do.  You have to both be committed to solving the problem at hand, not just to solving your own personal problem.  You have to believe that the other person has a problem too, and that it may be just as important as your problem, or even more important.  And you have to be willing to not jump down each other’s throats the moment you hear something you didn’t want to hear.  You have to be willing to look for answers, and look hard, and enlist help from other people in your community if you can’t do it on your own.  And you have to be willing to concede that there may be no good answer.

And that’s about all I have to say on the subject for now.  Aside from the fact that I’m going to try to commit myself entirely to Scenario #1, and to avoid people who are trying to push Scenario #2 on everyone.  Because Scenario #2 sucks.