Category: ableds

photo of people's legs as they stand in line for coffee; the upper corners have orange on them diagonally and the bottom has an orange line across it; in the middle of the pic in bold white middle-aligned text: "Cure Evangelism and Crummy Medical Advice"

Cure Evangelism and Crummy Medical Advice

Posted on by Grayson
I really love being on Twitter. It’s been the easiest way to find my people – usually disability rights peeps who are also a part of the LGBTQIA+ community.
Sometimes it can really suck butts, though.

 

Many people don’t understand how they have privilege despite being a part of a marginalized group. The lack of tone in text can confuse people, especially when trying to decide if someone is being hostile or merely assertive. There are the trolls who treat people awfully simply because they can, too.

 

The worst people, in my opinion, are those who mean well but cause harm anyway. As a society, having conversations about intent versus impact can be helpful here.

 

A subset of this group practices what is called Cure Evangelism, or giving unsolicited and unwanted medical advice.

 

Lately, those of us who do disability justice or illness awareness work have been bombarded by tweets or messages or even emails trying to sell us snake oil, tell us how to ‘heal’ ourselves, or similar things. This often happens after something we’ve said about ableism or health goes somewhat viral because we’re not allowed to have nice things.

 

Well, that and arrogance masking itself as sympathy. I mean, I have a team of nearly a dozen doctors working with me – some of the top doctors in the United States – and y’all think eating more yogurt is going to do the trick.

 

dark starry background with the white text "how about NO"
Anyway, here are some ableist gems:
  • “Who gave disabled people access to the internet?” (literal quote)
  • “I’m gonna fake being disabled and start a gofundme” (literal quote)
  • “Get fucking cancer” (literal quote)
  • “You’re too young to be disabled”
  • “Disabled people are nature’s way of thinning the herd”
  • “You’re not disabled – you’re differently abled/special needs!”
And the Cure Evangelist kinds:
  • “Literally every single body can process plants. You need to go vegan like me and you’ll be cured.”
  • “Veganism is accessible and cures a lot – you just need to try it!”
  • “No one actually needs to be gluten-free – it’s all a trend and probably making you worse”
  • “My [weirdly related person] had that and they ate two raisins and now they’re fine”
  • “If you just did yoga more…”
  • “Your medicine is what is causing you to be sick – stop relying on Big Pharma!”
  • “If you stop relying on your wheelchair, you’ll be able to walk.”
  • “You’re never going to get better being so negative all the time”
  • “You just need to focus on the positive – I mean, you’re alive, right??”
I could go on and on. I’ve seen so much – and then the responses once we stand up for ourselves bring in racism, sexism, and other forms of bigotry, too, reminding us that discrimination relies on discrimination.

 

What are some pieces of bad ‘advice’ you’ve gotten?

The Fight Ableism Prayer

Posted on by Grayson
Sometimes I get really tired in my fight against ableism.
It’s hard especially when our government makes it clear they don’t care whether we live or die. One of the biggest ways they show this isn’t just with the AHCA, but with how we are treated when we try to stand up for ourselves.
In the fight against bigotry, we may lose sight of why this matters and why we need to fight for ourselves and our future. People without chronic conditions or disabilities generally aren’t prepared to hear about the issues we face, especially because equality can feel like discrimination when you have privilege.
I developed the prayer below based on the Lord’s Prayer to help reinforce my inner strength to fight the ableds. I hope it helps you, too.
O, universe, all around us,
Help me fight the ableds.
Help them to listen more than they talk.
Let them learn how to be allies,
instead of harming, assuming, and speaking for us.
Give us this day our daily meds, physical therapy, and grounding exercises.
Help oppressors understand our tone,
As we don’t tone police ableds and other perpetrators of oppression.
Lead us not towards ableism and harm in our communities,
But help us identify the -isms and -misias therein.
Disability is a naturally occurring state.
The future will be accessible.
Nothing about us without us.

 

Memo to Everyone Ever: Please Stay Home When You’re Sick!!!!

Posted on by Grayson

Please stay home when you’re sick. If you’re not better after a week, go to the doctor.

I’m sitting here crying my eyes out and feeling just absolutely rotten because !SURPRISE! my boss came into work ill for like the last month. She’s not gone to the doctor either, so who knows what this is.

T is running to the pharmacy on his way home to see if the pharmacy can find anything I can take. Between the drugs I’m on and my allergies, I basically have like no options.

I’ve said it before, and I’ll say it again –

Rest. Don’t neglect your self-care in the interests of being productive. Don’t endanger the lives of other people by continuing to come to work ill. Don’t expose people with autoimmune issues on immunosuppressant drugs to your ick.

If you’ll excuse me, I need to go pass out.

Letter to People Without Chronic Pain

Posted on by Grayson

So I was perusing my RA-related Facebook pages today and found this post in one of the discussion boards. I think that it’s a pretty accurate description of how it is to try and explain RA to a ‘normal’ person.

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those who think they know, many are actually misinformed.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me….

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don’t seem like much fun to be with, but I’m still me–stuck inside this body. I still worry about school, family, my 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. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “but you look so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing every day. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being social” and so on….it applies to everything. That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are–to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise or “do something to get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would? I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain that you could ever imagine.

Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means I have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

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. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is a worldwide network (both on and off the internet) between people with chronic pain. If something worked, we would know. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all of the time, I know that I am doing my best to cope with this and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to understand in general.

In many ways, I depend on you – people who are not sick. I need you to visit me when I am too sick to go out…Sometimes I need your help with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you and I do thank you for listening, it really does mean a lot.