#actuallydisabled

Everything gets harder under extreme stress. The situation of constant political crisis we’re living through is extremely stressful situation, and a lot of people are struggling.

This is not a normal situation. Donald Trump has been doing horrific things since the moment he assumed office, some of which we saw coming, and some of which have been awful surprises. Both the work that has to be done and the terror we’re facing on a day-to-day basis are draining. We have faced one crisis after another, and it has been completely exhausting.

The baseline level of stress and work we’re facing right now makes everything harder in and of itself — and new emergencies can intensify that. (And sometimes you might think that you’ve gotten used to it and then find that a particular crisis hits you particularly hard.)

If you have a disability, this may be affecting you differently than it’s affecting nondisabled people. Most people are having trouble right now; most disabled people are having additional disability-related trouble. That’s true in both the background sense and in the sense that the impact emergencies have on you may be different for disability-related reasons.

If you have a mobility disability, moving might be harder right now. If you have a speech disability, speaking might be harder or impossible right now. If you have sensory issues, some sensory input you are normally able to deal with might be intolerably painful at the moment. If you have an eating disorder, it might be harder to control it right now. If you have seizures or migraines or other neurological problems, your threshold might be lowered. If you have trauma-related triggers, they might be harder to tolerate, or you might be more hypervigilant than usual. If you are hard of hearing, it might be much harder to understand spoken conversations right now. And so on.

Things you’re used to being able to do might be harder or impossible right now. Coping mechanisms you’re used to relying on might not be working. This is true for everyone, disabled or not. But with disability, we’re also having functioning problems that most people around us aren’t having. That can in itself be difficult to cope with. 

For many of us, self acceptance as disabled people is a struggle. Under extreme stress, acceptance can be even harder. Acceptance is a skill just like everything else — and under extreme stress, many of us are dramatically more impaired. Acceptance gets harder, at the same time that there is suddenly more to accept. But you’re still worthy of acceptance. You’re not broken. It’s just hard.

Being disabled isn’t a failure. Being more impaired in a time of extreme stress isn’t a character flaw. You’re not alone in struggling. Nondisabled people are also more impaired right now; and they also can’t make it go away through sheer force of will. The particular things you can and can’t do may be different — because you have a disability, and disability matters.

Tl;dr The times we’re living in involve a lot of fear and extremely stressful political crises. This kind of stress makes everything harder. If you have a disability, some of your coping skills might not be working very well right now. Acceptance may also feel a lot harder. It’s worth remembering that it’s normal to struggle in situations like this — and it’s not your fault that disability matters now. Your body is not a character flaw.

If a disability professional asks you to come and address their professional group, be very careful — especially if they ask you to “tell your story”. Sometimes disability professionals are prepared to learn from disabled people, but more often than not, it’s a setup for humiliating emotional exploitation.

Most disability professionals form their professional consensus on The Enlightened Approach to Disabled People without many or any disabled leaders in the room. Having already decided what they will do to us, disability professionals then bring in disabled people as validation fairies to help them feel the way they want to feel about it.

Even if the person approaching you seems nice, it’s worth being cautious — don’t trust a smile; look for evidence about whether or not they are prepared to take you seriously as an expert. Most disability professionals don’t want to learn from our expertise; they want us to help them feel good about themselves. What they usually want from us is an emotional performance that validates their self image and the approach they’ve decided to take to disabled people.

They want to feel inspired, without facing difficult truths. They want to feel moved, without changing. They want to say “I learn so much from you!” without reconsidering their worldview or professional practice,  and they want to say “You have such a unique perspective!” to every disabled speaker, while treating us as largely interchangeable. (Disability professionals who are actually prepared to learn from us acknowledge gaps in their expertise, and seek out disabled experts to teach them what they need to know.)

When disability professionals *mean* “come make us feel good about ourselves”, what they usually *say* is some version of “we have so much to learn from your unique perspective” or “my colleagues need to hear your story”. When disability professionals ask a disabled person to “tell your story”, they generally expect us to follow these unwritten rules:

• Tell the audience horror stories about your childhood that allow the listeners to feel righteous because We Would Never Do Such Things.
  
• Make sure that the stories are graphic, but not too graphic. Horrify the audience enough so that their pulses raise a bit and they feel brave for listening to you, but be careful not to horrify them so much that they have nightmares.
  
• Make sure that you tell the story in a way that doesn’t make them feel ashamed or responsible for any of it.
  
• Give them someone to identify with so they can feel like excellent people. Usually it’s either “my mom never gave up on me!” or “there was this one awesome teacher who showed me how to believe in myself!”
  
• Don’t talk about the lingering harm done to you, or how it’s affecting you in the present. Don’t make them think about harm done to disabled kids who are facing lifelong consequences of that harm. Don’t talk about present-day injustice, discrimination, or violence.
  
• Tell your story as a tragic misunderstanding. Don’t talk about discrimination or systematic injustice. 
  
• Allow your audience to laugh at you. Tell self-deprecating jokes. Don’t insist on respect.
  
• Don’t describe solidarity with other disabled people, and don’t attribute any of your success to other disabled people who you regard as equals. 
  
• Don’t describe fighting with a professional and winning, unless you can attribute your victory to someone they can identify with. 
  
•  Don’t be angry, and don’t describe other disabled people’s anger as legitimate. (Under some circumstances, it may be permissible to describe it as understandable, but only if you’re appropriately condescending and give the impression that the therapy provided by the professionals in the room would fix it.)
  
• Don’t talk about disability in political terms. Say that “times have changed”, without giving any credit to disabled people who fought for those changes. 
  
• Do not mention organized groups of disability activists, especially organized groups of disability activists who exist in the present and clash with disability professionals. 
  
• At the end of the presentation, open the floor for Q&A. When audience members presume that it’s ok to ask you intrusive personal questions, smile and give them an answer that makes them feel good about themselves. 
  
• When you’re in the audience of their presentations, do not expect this intimacy to be reciprocated, and do not expect them to show similar concern for your feelings. 
  
• Understand that you’re here to validate them, and they’re not there to validate you. Pretend that what they’re doing is listening and learning.
  
• Don’t break character, and don’t drop the mask. Don’t acknowledge the unwritten rules or the unwarranted emotional validation they want from you. Accept compliments about your “honesty” and “authentic first hand perspective” with a straight face.
  
• Above all, do not talk about being harmed by disability professionals who there’s any chance your audience would identify with.
  

When disability professionals expect you to be their validation fairy, this is a form of ableism and emotional exploitation. They should not be treating your life as a story about their benevolence as disability professionals. They should not be treating you as existing for the purpose of making them feel good about themselves. They should be treating you with respect as a real human being — and if you are an expert, they should be treating you with the professional respect due to a colleague.

I am not the validation fairy, and neither are you.

Tl;dr Disability professionals who say “tell us your story” often mean “make us feel good about how we’re treating disabled people”. 

Are you a disabled kid between the ages 7-17 in the US? Do you know one you can pass this on to? I’m starting a project called “Portraits for Disabled Kids” Fill out the application here

My name is Michaela Oteri and I’m a 30 year old disabled artist who specializes in portraits. You can see my work at http://ogrefairy.com I am trying to give a solid and fun representation to disabled kids from all over the United States. If chosen you will also receive $50!

3 kids ages 7-12 and 3 kids ages 13-17 will be selected. Priority will be given to disabled Black, Indigenous, and kids of color. The portraits and audio from interviews will be posted on a stand alone website and will not be used for commercial purposes.

The application will close on April 15th so be sure to apply soon!

ID under read more

[ID: Two digital drawings. The first is a kid in t shirt and shorts. They have tan skin and brown hair and are holding a corn snake. Beside them are pillars with snakes and fire on top. Behind them are more pillars and flames. The second kid is white with brown short hair that is shaved on one side. They are wearing big comfy clothes. Their shirt is baby pink and has stars and moons on it. They are wearing a backpack that has a baby yoda sticking out. Behind them are threes with sloths hanging from them. On the ground are some ferrets and they are wearing matching ferret slippers.]