The World According to Elizabeth

every-inch-but-one:

Please Understand…

queershoulder:

ALL OF THIS.

paradoxxed:

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

OMG yes, all of this….. this is exactly how i feel about being disabled.

transgalacticwanderer:

The Mind Rules The Body: How to Be a Friend to Trans Folks Without Putting Your Foot in Your Mouth: A Short Guide for Cis People

kiriamaya:

This goes out to all the cis people who, it’s quite obvious, want to help and befriend trans people, but who keep alienating and angering us instead. I’ve seen the befuddled looks on your faces when this happens, and I thought I’d try to clear a few things up for you. Let’s look at some common scenarios in which well-meaning cis people screw up with the whole pro-trans thing, and look at how some of these could go differently:

—

Scenario: You see someone whose gender you can’t determine just by looking at them. You want to make sure that you’re respectful of their identity.

Wrong Way to Ask: “Are you a man or a woman?”
Phrasing it this way will put the trans person on the defensive, and make them feel like you’re questioning and possibly even attacking their gender. It can also make them feel highly insecure about their gender presentation.

Right Way to Ask: “What pronouns do you prefer?”
This phrasing makes it clear that you intend to respect the person’s gender identity, regardless of what they look like. It shows an acknowledgment that the onus of respect is on you, and not their presentation or “passability”.

—

Scenario: You have just made an insensitive joke about trans people in the presence of your trans friend. You didn’t mean to hurt them, and you weren’t even thinking about them when you made the joke, but now the relationship is strained and you want to try to repair it.

Wrong Thing to Say: “Come on; it was just a joke! Lighten up!”
This tells your friend that you don’t take their pain seriously, and that you don’t think they should take it seriously either. It sends a message that trans lives and trans experiences matter less than your feelings of guilt and unease at being called out.

Right Thing to Say: “That was really thoughtless of me. I’ll try not to do it again.”
Nine times out of ten, your friend will know you didn’t mean to hurt them. Most people don’t. But they need you to understand that you have hurt them. They need you to know this, not so you can stew in guilt, but so all involved can heal and move on.

—

Scenario: Your trans friend doesn’t “pass”. You think you can see what they’re doing wrong, and you want to help.

Wrong Thing to Do: List off all the things they’re doing “wrong”, and tell them how to fix them.
Trans people’s self-esteem is rocky enough as it is. By focusing on all the ways in which they look different from cis people, you are not only causing anxiety and dysphoria for the trans person, but also reinforcing the idea that trans people are “lesser” or “fake”. Besides, your friend may not even see “passing” as a desirable goal, in which case you are getting up in their face for no reason at all.

Right Thing to Do: Mind your own damn business.
If your friend wants you to help with their image, they will ask you. Regardless, respect their gender identity unconditionally.

—

Scenario: You’ve messed up a trans person’s name/pronouns. You didn’t mean to, but you can see the anguish on their face, and you want to make things right.

Wrong Thing to Say: “I’m sorry; it’s just that you’re still [previous name] to me!”
Of all the things you could possibly say to a trans person, this is among the most hurtful. It’s one thing to struggle to accept someone’s identity; it’s quite another to impose the wrong identity on that person in order to excuse your difficulty.

Right Thing to Say: “I’m sorry. I’ll keep trying.”
Everyone makes mistakes, and everyone has difficulty adapting to a major change in another person. What’s important is that you try, and that you correct yourself when you mess up. That’s all anyone can reasonably ask; at the same time, it’s  the least you can do.

—

Scenario: You’re framing a health issue in terms of a specific gender (e.g., framing menstruation in terms of women), and a trans person points out that it isn’t necessarily unique to that gender and/or that they’re being left out of the discussion by your framing.

Wrong Response: “Well, BIOLOGICALLY speaking, it really does only affect [gender].”
Framing gender solely in terms of biology is always hurtful to trans people, no matter what the context. It’s even more hurtful when people who are strongly affected by an issue are deliberately erased in discussions of it.

Right Response: “Good point. I’ll try to remember it.”
We’re all soaking in narratives that mash all the complexities of gender into two discrete categories, so it’s understandable that you’d initially think in those terms as well. But expanding your mind is never a bad thing, especially when it means including people who need/deserve to be included.

—

Scenario: You’ve known your trans friend/relative by one gender all your life, and now, all of a sudden, they’re asking you to call them by a different name and pronouns. This comes as a shock, and you feel like you don’t know them anymore; you feel like they’ve died and some new person has taken their place. Yet you want to stay in relationship with them, somehow.

Wrong Thing to Do: Categorically refuse to respect their request, insisting that it’s too difficult and hurtful for you.
Your trans friend/relative has taken a great risk by revealing their identity to you, and they’ve done so because they want and need to stay in relationship with you. For you to refuse to accept them, for you to prioritize your (relatively smaller) pain over theirs, is terribly cruel. Your pain is absolutely valid, but this is not the way to handle it.

Right Thing to Do: Work out your grief issues with a counselor and/or with cis friends, away from your friend/relative.
The person you thought existed is gone, most likely forever. This is going to be very tough for you to deal with, and you absolutely do need to deal with it. But the person who does exist, the person you’ve loved, will need your continuing love and support — and that person is not responsible for your healing. Do whatever you need to do to get to a place where you can relate to them respectfully and lovingly, and do it without placing additional burdens on them.

—

In short: respect us; care about us; treat us as equals; be willing to learn; be willing to grow. Once you get the hang of it, it’s really not as hard as it seems.