Coming to Terms with Living

And the fact that it’s NOT a common threat is why we need to drill it so hard in the first place - instictive reactions to pain/danger are usually the correct response! It’s survival instincts! Like, if you get a bad cut, your first reaction will be to slap a hand on it and keeo it there, because ‘apply pressure to bleeding wound’ is the correct response! But being set on fire just doesn’t happen enough to be a serious concern as a species, so the instinctive reaction to that happening will actually cause horrific burns and/or death, because we don’t really need a naturally programmed in response for such a rare problem.

Altered Image: Warhol in Drag, 1981

If they’re not suggesting something, believing it’s a one size fits all solution (bed hair washing set ups, shampoo caps) their solution is to just… get rid of a part of our identity to suddenly “make it easier”. Long hair isn’t the issue when every movement and sensory input is punishing. Making it easier isn’t always the point. Sometimes the point is just sharing “this is what I go through because of my disability, something you might not think of if you’re not disabled/don’t have my disability”. It’s no different than any other person showing a day in their life or how they care for their hair. It’s just not conventional for you to see people still struggle with all the added help.

I wanted to also say that even if it is more work, you’re allowed to want to keep that effort as long as possible. You’re allowed to want to be “extra” in your care. You’re allowed to want to feel dolled up and pretty. You don’t have to give in to people telling you to either thin or cut your hair if YOU don’t want to. You are allowed to have it as you are, even if you have rapunzel length hair and it technically “WOULD” be easier, you’re not wrong for wanting to keep that part of yourself.