29 August 2013

How "Differently Abled" Marginalizes Disabled People

Some people, including people who would conventionally be categorized as disabled, use phrases like "differently abled" to refer to disabled people. This phrase is used because it supposedly humanizes disabled people by focusing on our abilities rather than on our impairments. Those who prefer the phrase "differently abled" often see the terms "disabled" or "disability" as potentially hurtful or offensive. "Dis" means "not," so the argument goes, so calling someone "disabled" must mean that a person is "unable to do anything," "incapable of ever doing anything functional or useful or desirable either by others or by themselves," and therefore, it is wrong to call people disabled.

Speaking from a purely objective standpoint, we as humans are all differently abled from one another. Some people are better at math than other people. Some people are better at public speaking than other people. Some people are better at cooking or even remembering to cook than other people. Some people walk and some do not, and of those people who do walk, not everyone walks in the same way. When referring to groups of people, there is nothing inaccurate with saying that within the group, each person is differently abled. This is true regardless of how many disabled people are in the group or if there are no disabled people in the group.

The problem arises when the term "differently abled" is used to refer to an individual disabled person.




Firstly, calling someone "differently abled" is euphemistic. It is borderline cutesy and it diminishes the actual experiences of disabled people. It suggests that the term disability should be uncomfortable and therefore should be avoided. What this does is further increase stigma against disabled people by discouraging discussion about disability and what it means to be disabled.

Secondly, using the term "differently abled" to refer to disabled people actually reinforces the idea that there is one normal way to be human -- that there is one normal way to move, one normal way to communicate, one normal way to sense, one normal way to feel, one normal way to learn, and one normal way to think. It does not perform its intended purpose of suggesting that all people are different and that this is okay. It suggests that only disabled people, who must now be called "differently abled" instead, are deviant or defective from this normal human model, and it suggests that there is in fact a correct or right way to be "able." It supports the false idea of the normal body/mind, which is what "differently abled" is supposed to undermine, and thus it fails in its supposed purpose.

Thirdly, the phrase "differently abled" ignores the reality that disability is the result of a complicated interaction between individual people's bodies/minds and social, cultural, and political structures that actively work to disable people with atypical bodies/minds. This happens because "differently abled" suggests that disability is one person's individual problem while also denying the impact of systems that privilege people with typical bodies/minds while marginalizing people with atypical bodies/minds.

When I say that I am "disabled," I am not putting myself down, insulting myself, suggesting that something is wrong with me, or making a negative statement about myself. I am staking a claim in an identity that is important to who I am as a person. I am recognizing that my mind/body function atypically, and that because of this, I am constantly forced by mainstream social/cultural attitudes and the laws and policies that enforce them to choose between being othered (and then discriminated against or outright harmed) or accepting the idea that I must hide who I am by passing as an abled person.

By calling myself disabled, I am rejecting the idea that it is wrong to have a mind/body like mine.

When I say that I am "disabled," I am not reducing myself to my disability, just as I am not reducing myself to my gender or my race when I say that I am a woman or that I am Asian. Being disabled is one part, albeit an important part, of my multifaceted identity. Each of these parts overlaps with each other, blurs into each other, and intersects with each other; they are not separated or disparate. It is important for me to define who I am, and being disabled is an important part of how I define myself.

I do not believe in referring to disabled people as "differently abled" because this language only serves to reinforce oppression of disabled people by systems that marginalize atypical bodies/minds.

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Photo: I (Lydia) am standing in front of several people walking down a stone path, holding a large white poster with the colored block letters "Autistic & Proud" in multi-colored rainbow handwritten marker. I'm a young east asian person with short hair wearing glasses. 

Queer Theory Reading List

I'm taking a course called Introduction to Queer Theory this semester. This is the list of required readings for the course, posted here because several friends wanted to see it and it was too long to post to Facebook. It is not an actual blog post, so if you were looking for an actual blog post, you can skip this one.

Queer Theory Reading List

Giovanni's Room by James Baldwin

The History of Sexuality, Volume 1, An Introduction by Michel Foucault

Autobiography of an Androgyne by Ralph Werther

Four Poems by Sappho (translated by Anne Carson) -- poems 1, 16, 31, 94

Six Poems by C.P. Cavafy (translated by Edmund Keeley and Philip Sherrard) -- "At the Café Door," "Craftsman of Wine Bowls," "Picture of a 23-Year Old Painted by His Friend of the Same Age, an Amateur," "Two Young Men, 23 to 24 Years Old," "The Window of the Tobacco Shop," "One Night"

"Aristophanes' Speech" from The Symposium by Plato

"Critically Queer" by Judith Butler

"The Finger" by William S. Burroughs

"Hassan's Rumpus Room" by William S. Burroughs

"The Man Who Taught His Asshole How To Talk" by William S. Burroughs

De Profundis by Oscar Wilde

"As a Wife Has a Cow: A Love Story" by Gertrude Stein

"Lifting Belly" by Gertrude Stein

"Miss Furr and Miss Skeene" by Gertrude Stein

"Alice Toklas, 89, Is Dead In Paris," March 8, 1967 (New York Times obituary)

Milk (film)

"Compulsory Heterosexuality and Lesbian Experience" by Adrienne Rich

"Diving into Wreck" by Adrienne Rich

"The Epistemology of the Closet" by Eve Kosofsky Sedgwick

Coming out statements by Anderson Cooper and Frank Ocean

"Thinking Sex" by Gayle Rubin

"Dueling Dualisms" by Anne Fausto-Sterling

"Melancholy Gender/Refused Identification" by Judith Butler

Readings from Families we Choose by Kath Weston

Paris is Burning (film)

"What's Wrong with Normal?" by Michael Warner

Readings from Times Square Red/Times Square Blue by Samuel R. Delany

"Is Kinship Already Heterosexual" by Judith Butler

Selections from Dykes to Watch Out For by Alison Bechdel

"Is the Rectum a Grave?" by Leo Barsani

Readings from And the Band Played On by Randy Shilts

"The Future is Kid Stuff" by Lee Edelman

"Atlantis" and other poems by Mark Doty

"AIDS Activism and Public Feelings" by Ann Cvetkovich

How to Survive a Plague (film)

Readings from Beautiful Bottom, Beautiful Shame by Kathryn Bond Stockton

Readings from Anachronism and its Others by Valerie Rohy

"Transgender Butch: Butch/FTM Border Wars and the Masculine Continuum" by Judith Halberstam

Introduction to Imagining Transgender by David Valentine

Hedwig and the Angry Inch (film)

"Queering Migration and Citizenship" by Eithne Luibheid

"On Homosexual Reproduction" by Valerie Rohy

"Rooster at the Hitchin' Post" by David Sedaris

"Friendship as a Way of Life" by Michel Foucault

"The Navigators" and other poems by Marilyn Hacker


26 August 2013

How to be an Ally for People with PTSD

Trigger Warning: Discussion of PTSD, abuse, violence, triggers, ableism, references to rape and the r-word

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I've posted this on behalf of an awesome friend of mine at their request. Ideas derive from direct and indirect input from various survivors and folks with PTSD. (For the record, it's the same awesome friend who gave permission to share "A Guide to Sighted Allyhood" and "How to be an Ally to Sick People.")

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How to be an Ally for People with PTSD

This is long, and deep. I recommend coming to this when you have a chance to really soak it in and reflect. This piece is also centered more on C-PTSD from ongoing trauma. I welcome perspectives from people with acute PTSD or one-time traumatic experiences.


BACKGROUND

All of us experience anxiety in some situations. Whether it's having to present in front of a huge audience, perform in front of a panel of judges, undergo surgery, or whatever, we all have moments in our life where we face (sometimes extreme) anxiety. However, Post-Traumatic Stress Disorder, or PTSD, is what happens when someone's lived trauma (including but not limited to: combat exposure, natural disasters, abuse, rape, violence, medical treatments, torture, a near-death experience or other life-threatening event) leads to a chronic level of high anxiety, hyper-vigilance, being in a constant survival mode, and re-experiencing the traumatic event or emotions surrounding it (often called "triggers" and "flashbacks").

Complex PTSD or C-PTSD is frequent in people who have survived ongoing trauma where they could not escape, especially during childhood, such as childhood sexual abuse survivors, survivors of abusive cult rituals, or ongoing painful medical treatments. It includes a sense of broken trust, a loss of self, dissociation, and attachment issues. Many people with PTSD also have other anxiety disorders, depression, and chronic illnesses, because trauma tends to throw off the entire mind-body system. Since many people do not disclose having PTSD, and many people living with PTSD don't have an official diagnosis, you can't always rely on people telling you they have PTSD. Some ways to tell if someone MIGHT have PTSD is if they are often easily startled, jumpy, or on edge. If reading this seems to describe someone you know, it may be good to give them the benefit of the doubt and follow this advice, even if they don't have PTSD/ don't know if they have PTSD.

First & Foremost

PTSD is not a choice.

It is not a matter of will.

It is not a matter of being weak-minded.

PTSD is what happens when you've had to be strong in a time of intense suffering.

PTSD can happen to anyone who has lived through trauma. Life-threatening or soul-crushing trauma. Not small traumas where you fall, get up, and return to your sense of safety--Big Trauma, the kind of Trauma where you fall, and when you try to get up, there is no ground beneath you to even sit on. The kind of Trauma that shatters your entire perception of the world and the people in it.

Some research shows a genetic disposition, anatomical and physiological changes in the brain and brain chemistry, and points to other predicting factors that a trauma survivor will develop PTSD. If you are a Trauma survivor but don't have PTSD, consider other factors. You may have had a support system whereas another survivor didn't. You might have lucked out genetically. The point is, some people get PTSD and some don't. It's a common (but not universal) human response. It's not about seeking attention, being a drama queen, being hypersensitive, being stuck in the past. Something awful, or something in addition to what you've already survived could happen to you tonight and you could develop PTSD as a result.

First I will outline some practical tips, and then I will launch into explanations that give background context to why these tips are useful. It might be helpful to come back to these tips to understand them in their full context.



PRACTICAL TIPS

Trigger warnings

You can include a trigger warning for topics that are likely to cause distress. This is useful on Facebook, Tumblr, in a book or e-book, in an article, or any other text format. Here's what it looks like:

Trigger warning: rape culture
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[start talking about rape culture here]

The spacing and punctuation is intentional and is meant to off-set the triggering content from the warning. It gives survivors a chance to decide whether they want to face distressing content. If the content of a post seems to be borderline between potentially distressing and neutral, you can use "Content note" instead of "Trigger warning" so that you don't have to judge the level of potential distress. For example:

Content note: food and dieting

In in-person events, you can preface any stories or comments by saying "this might be triggering for some people" or "I plan on discussing torture at the Judge Rotenberg Center. If anyone wants to step out now feel free."

A specification of detail can be helpful too. For example:

Trigger warning: brief mention of rape
Trigger warning: discussion of rape culture
Trigger warning: detailed account of rape

Are all the same content, but to varying degrees.

Touch & Personal Space

Always ask for consent before touching someone or getting in their personal space. Establish which parts of someone's body they are okay to have touched, and what kind of touch is okay, and what amount of personal distance is okay. Ask every time. For example:

"Do you want a hug?"
"Is it okay if I lay down next to you?"
"May I touch your hand?"
"Can I play with your hair?"

If the person says no, or is very hesitant or unconvincing with their "yes", let it go.

Needless to say, all of this translates to the bedroom. In sexual intimacy, it is important to be VERY explicit about consent. Consent should be established for every new kind of sexual activity every time. This is especially crucial for sexual abuse survivors.

In long-lasting relationships you can establish norms.

Discussing Trauma

Leave it up to the survivor to reveal their story, how much, and in what way. For example, if you are sitting at a table with friends and the topic of Hurricane Katrina or Applied Behavioral Analysis (ABA) Therapy comes up, don't say "Oh yeah, Dave, didn't you go through ABA?" or "Oh yeah my friend here is a Katrina survivor." Respect a survivor's choice to tell their story on their own terms.

If someone asks for a topic change, respect that request. No questions.

As an Ally if you suspect someone is triggered, you can use these moments to check in in a discreet way. For example you can use a non-verbal cue or send a text message. If they indicate they are not okay, you can try to change the subject naturally: "Did anyone see that movie that just came out?" Making it into a big deal--"Let's not talk about Katrina; some people at this table have been through it"--can be embarrassing and awkward for the survivor. Try to keep it subtle.

Sometimes a survivor is triggered but wants to face it in the moment and use coping skills. Respect that choice too.

CONTEXT

Triggers & Flashbacks

You might have noticed a trigger warning at the top of this article. Triggers are sights, sounds, smells, feelings, words, ideas, thoughts, and situations that remind someone strongly of their trauma. Triggers are named so because they often trigger flashbacks, which is an intense re-experiencing of trauma or feelings around it. A flashback can range in intensity. A person having a flashback can experience anything from a tinge of fear to being fully convinced they are back in the traumatic situation. So, for example, reading the word "rape" in an online article might remind a rape survivor of when they were raped. The smell of beer might trigger flashbacks for a survivor if their attacker had beer breath during the attack. A loud sound or vibration might remind a combat or earthquake survivor of their trauma. Being belittled or dismissed in a conversation might trigger a survivor whose abusers belittled and dismissed them for years.

If someone's level of anger or fear seems disproportionate to the situation at hand, there is a good chance they are being triggered. As an Ally, you can remind yourself that this person is not only processing their present feelings, but also past feelings that they were never given the chance to acknowledge. When we are surviving trauma, we do not have the safe and nurturing environment to confront our feelings. Therefore, a survivor may have years of buried anger, fear, shame, and other intense emotions. Present-day situations may bring up these emotions. For example, if someone calls your friend a retard and your friend reacts by flying on the handle, it may be because they were called a retard for years growing up by the people who abused and hurt them.

If you suspect someone is triggered, telling them "oh you're just triggered" will not necessarily be received well. Sometimes when people trigger, they don't realize they are triggered. Some people recognize they are in the moment; some recognize it in retrospect; some never do. Each survivor is in a different place of healing and self-awareness.

Meet the person where they are in terms of their healing. If they acknowledge being triggered, you can too. If they deny it, recognize that they have not gotten to the point in their own healing yet to recognize it. It's easy to recognize from the outside looking in, but as the survivor, it requires stepping outside oneself, which is a pretty advanced stage in the healing process. Respect where they are at and do not place a value judgement on their healing process.

As an Ally you can validate this person's feelings. Recognize that it is the part of themselves that was hurt and traumatized speaking. Realize that it is about more than just Here and Now. It's not just about this small incident that happened--it's about much more. Recognize that even displaced anger can still be valid anger. Comfort the hurt part of that person. Do not belittle the person, argue technicalities, or try to push along their healing process. They will heal on their own timeframe, on their own terms. Support them at their pace, on their terms.

Note: This does not mean allowing or excusing abusive behavior. If a triggered person is being abusive, you are allowed to hold them accountable for their behavior. You should take measures to establish your own emotional boundaries and seek safety from abuse. That said, if you acknowledge the survivor inside them and comfort that survivor, oftentimes that dismantles the abusive behavior. It is their Inner Survivor begging to be heard and once heard, the need for self-defense often subsides.

Boundaries & Consent

When someone is in distress, our immediate reaction is to give that person a hug, or some kind of physical affection. So a lot of non-PTSD folks may be inclined to be physically affectionate when someone is triggered or having a flashback.

Establish consent before carrying out any sort of physical or emotional intimacy.

Many Survivors have had their personal boundaries, both physical and emotional, violated. Therefore, it is common for someone having a flashback or being triggered to NOT want physical contact.

It is also a common reaction for people with PTSD either to have non-existent boundaries or to set down concrete-wall boundaries. Many people with PTSD are still learning how to establish healthy boundaries and may set boundaries at both extremes before the pendulum swings towards the center.

Physical Boundaries--it is really important to ask a survivor if they want a hug or want to be touched. If they say "no", respect that request.

How much, where and the kind of touch can make a difference. Some people are triggered by forceful touch but not light touch, some people are just the reverse. Some people can handle touch in a quiet area, but in a busy or noisy area may not want to be touched. The presence of other triggers in the environment may affect someone's level of touch-aversion. It's also a good idea to be more explicit about respecting personal space in general. For example it might be considered nice but not necessary to excuse yourself if you have to reach over someone, but these small courtesies can have a whole other depth of meaning for people with PTSD.

If the person in question is in such distress they cannot express themselves clearly, check for signs. Does their body tense up when you touch them? Do they try to break physical contact after you've established it? Do they back up or look threatened when you approach them? These are signs they don't want to be touched.

Do they relax and seem calmer when you touch them? Do they reach out to initiate physical contact? Do they look comforted when you reach to hug them? These are signs they want to be touched.

Emotional boundaries--when a person is having a flashback, it is important to ask the person if they want to talk about it first. If they want to be left alone, respect that space. If they want to talk to someone else that is not you, respect that too. Many survivors have had their trust in people or situations severely tampered with and may be working on building up trust again. It's important not to force trust. If that person needs to turn to another person they trust more right now, or if that person feels they cannot trust anyone right now, give them that space. Do not take it personally. If a survivor does not trust you enough to talk to you about it, it has nothing to do with how trustworthy you are and has everything to do with them learning to build up trust again. As they heal, they will start to trust more.

Situational boundaries--it is a good idea to give survivors flexibility with getting out of a situation. For example, if you host a party and it turns out you've invited a survivor's perpetrator, find a way to either get rid of the perpetrator or at least minimize their interaction as much as possible. If a party has drugs and alcohol and your friend is triggered by drugs and alcohol, offer to leave with the survivor. If you want to go see a movie, and you know your friend is a veteran, mention if the movie contains lots of combat scenes. Give them a heads up and offer an out. If they express a strong aversion to something, don't pressure them into doing it. Respect their aversion and move onto something else.

It can be painful to be on the outside of a PTSD survivor who is going back and forth between being overly trusting and overly distrusting, setting no boundaries and then concrete-wall boundaries. This may bring up your own emotional history. In this situation, as an Ally, it is extremely important to take care of yourself too. Reach out to people OUTSIDE your relationship with the survivor to talk to. Seek your own support system as well. Respect your own boundaries and limits as well.

"So, what happened?"

Do not ask a survivor about their trauma. They will come to you about it if and when they are ready. If they never do, don't take it personally. Some survivors find it easier to express their trauma through other channels such as poetry, art, music, dance, etc. Confiding in loved ones is only one channel.

When a survivor comes to you about their trauma, this is an honor and a privilege. It means they trust you enough to be vulnerable. This is not the time to judge whether their trauma really happened, if it was really that bad, if they are exaggerating. This is not the time to fact-check or cross-examine them. Trauma can be hard to remember. Memories are can be confusing, fragmented, and hard to fully understand. Emotion distorts memory and the human mind is not perfect. A survivor might also be mixing up memories from two separate traumatic events or may be missing some pieces of the puzzle. Childhood memories may also be through the lens of a child's mind and therefore may make it hard not only for you, but for the survivor themselves to understand through their adult mind. Often memories are just as confusing for the survivor as they are for you.

This is not the time for unsolicited advice. Do not tell them "well you're the one who enlisted" or "your shirt was low-cut and you were drunk" or whatever other "explanation" you have. The trauma is not the survivor's fault. Do not victim-blame. It is either the result of bad circumstances (such as in the case of natural disaster) or the the fault of the perpetrator (the person who hurt them).

This is not the time to tell them about how you or someone you know lived through something worse. This is not the time to remind them of the starving children. The pain and suffering of other people does not lessen a survivor's pain. Playing Trauma Olympics serves no one and is an undercut way to dismiss or brush off the survivor's trauma.

Instead, take the survivor's story at face value. Trust the process. In listening to their story without judgment and with compassion, you help them in their healing process. You are not obligated to offer some golden nugget of wisdom. Just your presence, a lending ear, eye, or hand can work wonders. It is a privilege to be in this role and have the opportunity to show allyship in this way.

Keep in mind that PTSD is related to the person's own perception of what happened and their survival response during the trauma. In other words, even if, for example, a doctor told a cancer survivor they would die from the cancer, and they ended up surviving, they still need to process the emotions of having believed they were going to die.

This also means that two people could have survived the same traumatic event (maybe even together) but still have responded differently. Different survivors will be affected in different ways and to different degrees. That is because trauma does not exist in isolation--the person's life before the event, how they were able to respond to the event, and their neurology all factor into how their PTSD manifests now. Everyone is different. No two survivors are the same.

This is a live document and open to change. If you have PTSD or are a survivor, feel free to comment! I know I didn't cover everything there is to say on this topic, so please, please feel free to add whatever comes to mind.





23 August 2013

The White House | Keeping the Promise of the ADA: Unequal Justice for Disabled Victims of Murder

After last month's invitation to the White House to be honored as a Champion of Change on the anniversary of the Americans with Disabilities Act, my post for the official White House blog is finally up for the public to see.

(Trigger warning for discussion of violence, murder, and ableist attitudes justifying murder.)

My favorite quote:
"As long as people like me can be killed for the crime of inhabiting atypical bodies and minds and as long as those responsible can escape any real consequences for their crimes, neither I nor my children nor my children’s children will be free to achieve equality of access and opportunity. The specter of violence remains an enormous obstacle to equal rights for Americans with disabilities. Until we begin to have serious discussions about the ramifications of violence against people with disabilities and what we can do to implement policies and foster communities that respect and affirm people with disabilities, these realities will remain ensconced in shadows."

You can read the rest here, but sadly, comments are not enabled over at the White House site.

22 August 2013

How to be an Ally to Sick People

Trigger warning: Quoted examples of ableist, patronizing, condescending, or hurtful speech directed toward sick and disabled people.

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An awesome friend of mine shared this earlier today and gave permission to repost here so many more people could see this and contribute. Ideas derive from direct and indirect input from various sick and disabled folks. (For the record, it's the same awesome friend who gave permission to share "A Guide to Sighted Allyhood.")

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How to be an Ally to Sick People

By "Sick" here, I am talking about people who deal with chronic illnesses like fibromyalgia, lupus, arthritis, multiple chemical sensitivity syndrome, chronic fatigue syndrome, and other physical conditions that are not always immediately noticeable. Some people with more apparent disabilities (like wheelchair users) may also be dealing with similar symptoms, as part of their disability, that are less apparent. (For example people with muscular atrophy, spinal cord injury, etc. might also be dealing with fatigue, chronic pain, etc.)

This is just my opinion, one person's perspective, though I have run it by some other people too. Please don't take this as the gospel though. I welcome additions from anyone who is Sick or Disabled in an often unapparent way.

In each section, I start with the DON'Ts to help highlight the DOs.

1. Being the Judge. The Judge says: "You were able to do that yesterday." "But you went on a hike with me once." "You don't look like you're in pain though."

Do not make yourself the judge of a person's level of pain, fatigue, etc. Everyone has good days, bad days, in-between days, and you don't know what price they pay to do the things they do. Maybe they went on that hike and spent a week in bed after because they really wanted to enjoy nature and decided it was worth it. This person's care team monitors their health much more closely than you can as a bystander. This person's (chosen) family has seen how their illness affects them much more intimately than you have. Leave it to their support team, and realize that a smile and vibrant look for 2 hours at a party doesn't mean that person isn't sighing or in tears when they go home. If you are not very close to this person, there might be a whole other side you never see. They might not feel like being on public display, and making themselves vulnerable.

An Ally says: "I'm sorry you're hurting so much more today." "I feel honored that you accepted the health risk just to spend time with me in nature." "Wow, you have impressive coping skills for hiding pain."

An Ally recognizes that they do not have the same experience as a Sick person--they do not understand the natural ups and downs and fluctuations. An Ally understands that often when a Sick person comes off as more abled than they are, it's out of a conscious choice to pass, or in other words, juggle perception and reality. An Ally recognizes someone's skills in passing as abled for survival, while only being a source of support when the Sick person lets the pain show, can't hide the fatigue anymore, and respects the person when they choose to be vulnerable and emotional.

2. Being the Doctor. The Doctor says: "You should eat less sweets." "You should stop drinking." "Have you tried acupuncture? Exercise? Raw food diet?" Etc.

This person has dealt with their symptoms far longer than you have. They know what options are best for their body and what options aren't. Their health is their personal business. They will ask you for advice if they want it. They also know when they have to make choices for their emotional health. Maybe some ice cream helps them deal with the shitty reality of being in sick. Maybe a beer helps reduce their pain, or makes it easier to deal with symptoms mentally. Respect that they are coping with the situation in the best way they know how, now, and with the support that they do/don't have. Try to be a source of support. Keep in mind that whatever you have to suggest that they didn't ask for, they have probably already heard it nine million times before.

An Ally says: "I'm so glad you're engaging in self-care." "You deserve a break from the pain/fatigue/nausea/etc." "Would you like some suggestions? [in response to a "yes"] This is what has worked for me/someone I know."

An Ally recognizes each body and mind is different. An Ally recognizes the mental, spiritual, and emotional needs that also need to be factored into living with chronic illness. An Ally aids in finding ways a Sick person can get some kind of relief (even if temporary or partial) from their symptoms. An Ally recognizes that medications, therapies, and remedies that may have worked for them or someone they know may not necessarily work for everyone. An Ally gives advice only when asked.

3. Being the Parent. "Are you sure you can take that many classes?" "Are you sure you can do that job?" "Should you really be staying out this late?"

This person can make their own choices and figure out their own plans. They have figured out ways to do what they wanted in the past, and can figure it out for the future too. They already know better than you the price they will pay for their choices now. Don't take it upon yourself to parent them if that is not something they have indicated they want. If they ask, that's another story, but don't impose that role onto yourself (and the role of the helpless child onto them). No matter how well-intentioned you are, when the help is not requested, it's patronizing.

An Ally says: "I support you in pursuing your dreams." "I know you can do it." "You can crash at my place if you need to."

An Ally realizes that abled people do not always make the wisest choice for their bodies because sometimes they want to have social lives or have fun. Sick people are no different. An Ally recognizes that a Sick person has the same right to fun and community. An Ally is willing to take steps to help the Sick person live an enriching life and trusts Sick People will go through their own process of figuring out how much or how little they can take on career- and hobby-wise.

4. Being the Martyr. "I always have to give you rides everywhere!" "Why do I always have to do the house chores?" "What would you do without me?"

Caregiving is great when it is just that--giving. Giving with conditions in mind, with guilt-tripping, with threats of withholding the support if the Sick person doesn't do a) b) c) is not true caregiving. At best it's not nice, and at worst it's abusive. It is wielding privilege over the other person and creating an unbalanced power dynamic.

An Ally says: "I'll give you a ride"--without making themselves into the Savior for doing so. An Ally cherishes and values the ways in which a Sick person can contribute to a relationship, even if those ways are less tangible. An Ally recognizes that chores and practical every day living stuff is only one way of giving in a relationship and that a Sick person may have to find other ways to give back (such as through art, emotional support, expressing appreciation). An Ally recognizes that there is a power dynamic and that privilege needs to be carried with care and conscience. An Ally also respects their own boundaries and limits with giving so that resentment does not build up in the relationship.

5. Being the Complainer. The Complainer says: "It's exhausting hanging out with you." "You're always canceling plans last-minute." "I can't do this."

Being in a caregiver role, or even just being a friend or acquaintance of a Sick person can be a lot to handle. Sometimes it seems like tough stuff and maybe more than you can handle. However remember that while this is hard for you, it's even harder for the Sick person. Imagine what it's like to be in their place.

An Ally says: "I love hanging out with XYZ but it can be exhausting"--to someone else they trust, not the Sick person. An Ally lets other abled people who are able to be emotionally supportive know: "XYZ may or may not show up to the party tonight"--without judgment. An Ally says "I can't do this alone"--to a person who is dealing with less hardship than themselves and seeks support OUTSIDE the relationship with the Sick person. An Ally reaches out to other people to vent and debrief about the hardship of being friends with a Sick person or in a caregiving role.

6. Being the Worshipper. The Worshipper says: "You are such an inspiration!" "Wow, if I were you, I would just kill myself." "You must have a special relationship with God/[insert spiritual figure here]."

A Sick Person does not exist to make you feel warm and fuzzy inside. Your sense of gratitude for your own health and circumstance should not be hinged upon their suffering. There is no correlation between being Sick and any sort of spiritual or religious status. Sick people, liked abled people, run the gamut in terms of religious and spiritual beliefs (or lack thereof). It is important not to view a Sick person's existence in terms of your own, or to impose shallow stereotypes onto Sick people.

An Ally says: "Sometimes you stay strong, and sometimes you crumble, because you're human." An Ally says: "I respect your feelings about life and death."

An Ally takes a Sick person's words about faith/spirituality/lack thereof at face value. An Ally gives a Sick person the space to be an individual, and realizes we all individuals yet all interconnected. A Sick person might teach you something, but you might teach them something. And yet, even if you have strong impacts on each other and learn from each other, your life purpose is not reduced to their education. You each live for your own sake first.

7. Being the Over-Empathizer. The Over-Empathizer says: "Oh I know what you feel like--I hate when I get the 24-hour flu." "Oh yeah, I'm tired after a long day too!" "I pulled a back muscle once."

Yes, we have all suffered to some extent. We've all dealt with some degree of sickness or injury. But it is important to remember that being temporarily sick, or in temporary pain, is not the same time as chronic illness or chronic pain. The intent to be compassionate is recognized, but it's important not to diminish a Sick person's experience. It's important to recognize abled privilege. If on the vast majority of days you aren't tired, aren't in pain, etc. then you do not understand being Sick.

An Ally says: "I can't imagine what it is like to feel nauseous every day." "I have no idea what it feels like to be tired by 11 AM." "You're right, I don't know what it's like."

An Ally recognizes their abled privilege. An Ally is compassionate but recognizes they do not fully understand. An Ally uses their experiences and draws parallels to try to get an idea, but recognizes that temporary pain/injury/discomfort is only a small taste of what Sick people go through. An Ally recognizes that pain/symptoms/sickness is a Sick person's baseline, their every day.

8. The Victim-Blamer. The Victim-Blamer says: "Why don't you stop focusing on it so much?" "Maybe you were evil in a past life and are dealing with this to fulfill karma." "Maybe if you listened to my advice you'd feel better."

Different Sick people cope in different ways. Some Sick people find that thinking and talking about it helps. Some Sick people find that it doesn't. Sometimes shitty things happen to perfectly good people, and this is no exception. The underlying reason to victim-blaming is often some attempt at denying privilege or absolving guilt. Realize that the Sick person did not choose illness and you did not choose abledness. It's not their fault they're Sick (even if they made poor health choices at one point, so did a lot of people who never became Sick). And because you didn't choose to be abled, there's nothing to feel guilty about. Feeling guilty helps no one; if you recognize your privilege and feel stuck, think of ways you can use that privilege to practice allyship.

An Ally says: "If you need someone to vent to, I'm here." "I don't need to insert my opinion into every discussion about chronic illness." "It doesn't matter what made you sick, how can I best be supportive now?"

An Ally recognizes that Sick people are human and sometimes get overwhelmed by their situation. An Ally recognizes that at times a Sick person may want to vent among other people who understand first-hand what it's like. An Ally also recognizes that we all make mistakes or poor choices and that is a part of being human. An Ally recognizes for example that one person could text and drive and nothing happens, and the next could text and drive and get permanent brain damage. Even if an illness is connected to a poor choice, it still doesn't mean the Sick person deserves the illness.

Other comments that come from a place of privilege:

"Your outfit looks so tacky." Part of being Sick is that often when it comes to getting dressed, comfort comes first. If the only pants you can bear to have touch your skin today are the blue pineapple shorts, then that's what it's going to be. Note: many Sick/Disabled professionals wear the necessary attire and look forward to ripping it off and putting on PJs the second they get home.

"You can't be an activist sitting at home on your couch. If you really care, you'll come to this protest/ rally/ march." Many Sick/Disabled activists have no other choice. Online activism is just as valid as in-person activism. Activism is about ideas and changing the way we think--it's not about how many hours you spent under the burning sun/ in the cold wind.

"Your apartment is a mess." Doing chores takes energy that many Sick people don't have. It's not the same as laziness. Laziness is "I could do it if I wanted to, but don't feel like it." Being sick is literally being so drained of energy you wouldn't be able to do it even if you wanted to.

Sick folks, feel free to add! This is a live document--a work in progress--I look forward to having other perspectives added. If you need to see this in ASL or another format, let me know. Contributions in other formats are welcome (if you want to talk about it in PM and have me rephrase, or sign your thoughts to me in TASL, I welcome them.)

Added later!

9. Being the Ablesplainer. The Ablesplainer* says: "She was just trying to be nice." "But that's not how I meant it!" "You're too focused on how you feel."

Sick/Disabled people already know how that abled person meant it. We already know that they were just trying to be nice, or kind. Good intentions, good-heart, we get it. We spend our time thinking about "what they meant by that comment" or "their thinking behind that act" all the time. We are forced to think critically about the abled perspective because most people in our life who interact with us interact with us from that perspective.

An Ally says: "That was a dismissive comment to make." "I'm sorry you are frustrated." "That person didn't think about the impact their actions would have on you."

An Ally puts impact before intent. An Ally recognizes that even though someone means well, their words, thoughts, and actions can still have a harmful impact on Sick people. An Ally centers the Sick person's feelings in a discussion about their chronic illness and caregiving. If a Sick person vents about patronizing behavior, an Ally listens to the Sick person and values their feelings. An Ally doesn't make excuses for another abled person's behaviors.

*Ablesplainer (also ablesplanation): the act of an abled person trying to explain Disabled people's experiences to them. It comes from combining the terms abled and 'splaining, constructed parallel to terms like whitesplaining and mansplaining.

10. Being the Newscaster. The Newscaster says: "Oh, they had to get this test done and has that diagnosis and their doctor said this and that." The Newscaster answers all questions about a Sick person's health on the Sick person's behalf without express consent or discernment.

When some is Sick, particularly when they have to go to the hospital or get some kind of treatment, it's natural for people to be concerned. People want to know this Sick person is doing okay. They want to understand what's wrong and offer help in whatever way possible. The Newscaster is usually acting on this intent, but does not realize that they are not respecting the Sick person's boundaries. They also do not realize that they could be causing a lot of drama for the Sick person, particularly if they share sensitive medical information to people who could make harmful judgments based on this information (for example, an employer deciding to lay off an employee after finding out they're likely to be out for awhile.) 

An Ally says: "They had this test done"--after the Sick person has given express permission to share this medical information. An Ally says: "He doesn't want to go into detail, but suffice it to say he is doing better." An Ally asks the Sick person how much to share, and who can know what information.

An Ally respects the Sick person's boundaries. An Ally respects the Sick person's choices in how much to disclose about their illness and to whom. An Ally prioritizes the Sick person's privacy over others' curiosity. An Ally understands the risk in sharing medical information and treats this information with the respect and care it deserves.

19 August 2013

How They Hate Us

Trigger warning: Direct quote of long text of extreme hate speech, use of r-word and other slurs, implied threats of violence.

How They Hate Us

Brenda Millson of Newcastle, Ontario received a hate letter on Friday about Max, her thirteen year old autistic grandson. The family have contacted the police.

If you need any more evidence that yes, ableism is actually a thing, then go ahead and read the letter below. If you're on the front page of this site, you'll have to click past the jump to see it. (Yes, it's bad and horrible enough that I added a jump line to prevent people from accidentally scrolling down from the homepage.)



16 August 2013

Project: Inaccessible Spaces at Georgetown University

In the next four months, I will be embarking on a project I alluded to several months ago. I've never been trained formally in photography, but I will be taking a series of photographs (with descriptions, naturally) of inaccessible spaces at Georgetown University. The photographs will be shared (and updated) on a dedicated page when the project is sufficiently underway. 

I am exploring spaces that are inaccessible for any disability-related reason. Some examples might include the placement or omission of Brailled signs, the omission or dysfunction of automatic door opening buttons, or flickering lights that might induce seizures in people with photosensitive epilepsy. 

Any space on the campus (or on the Law Center campus) is fair game.

I already know of several specific locations, but I welcome suggestions.


If you know the campus or have been by for any reason, please feel free to suggest spaces either in the comments or by email at lydia@autistichoya.com.

10 August 2013

Critiquing Temple Grandin

Trigger warning for ableism.

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Temple Grandin. Image description: A headshot of an older white woman with very short, somewhat curly, brown but graying hair, looking directly at the camera. She is wearing a cobalt blue collared shirt and a silky black scarfy tie thing. Behind her is a wooden fencepost with rope draped over it.


Temple Grandin is widely recognized as the world's most famous autistic person. She's written a number of books about autism, regularly travels around the globe to give talks at conferences, and was even the subject of a documentary on her early life (eponymously titled Temple Grandin). Other autistic people, as well as folks outside the community, have written on a number of aspects of the troubling things that Temple has said or the way in which she is positioned in rhetoric on autism both in broader society and within our own community.

I have several criticisms of both Temple Grandin's positioning as well as her positions.

Because Temple Grandin is functionally the world's only famous autistic person (and certainly the most famous), what she says about autism is taken as gospel, regarded as absolute truth, and frequently generalized as if representative of the experiences and views of every other autistic person on the planet. This is despite the fact that her experiences are inextricably linked to her race, her class, and the time period during which she came of age -- not to mention the inevitable tensions that come with being the first widely-recognized autistic to speak on an autistic experience.

What Temple Grandin has said about autism is frequently extremely ableist, classist, and otherwise very problematic. Because of her prominence on the world stage, her international acclaim, and her extremely high levels of visibility and name recognition, her ideas have proliferated quite abundantly. Yet this is also due in part to the fact that her positions render her an acceptable autistic, a well-behaved autistic willing to conform to hegemonic normative standards and compliance as ethics. In other words, Temple Grandin's articulated ideas about autism and autistic people fit into the pathology paradigm that dominates autism discourse.

Temple Grandin is frequently tokenized or used as a nice window-dressing -- to borrow Jim Sinclair's term, she is frequently paraded at mainstream autism conferences and symposia as a self-narrating zoo exhibit. Because she is autistic and her statements align with those articulated from an ableist sensibility, neurotypicals advancing the views that autism presents a problem of pathology can claim authenticity or legitimacy for their position through Temple Grandin's reiteration of the same sentiments.

Temple Grandin believes that "high-functioning" autistics are talented, intelligent, and necessary to human survival, while "low-functioning" autistics cannot function or live independently, and thus should be cured in the present and prevented from existing in the future. Both I and others have thoroughly deconstructed the false dichotomy of high and low functioning, but suffice it to say that such claims not only reinforce ableist hegemony, but also reinforce a capitalist notion of success and value in that only people who can produce are worthy of inclusion in society; all others are burdens.

Her belief that nonverbal autistics are tragic and pitiable evokes a sense of moral disgust and outrage, particularly when coupled with the many voices of nonspeaking autistics demanding a claim to voice, to agency, to capacity -- asserting competence, self, and pride.

Her belief that the only autistics who ought to be considered valuable and thus valued are those who have a job and learn to function within neurotypical norms is colored inescapably by classism and ableism -- the very systems of oppression that serve so frequently to reinforce the violence of capitalism.

Her belief that autistic children should be conditioned to normalize their behavior, communication, and movements for the sake of indistinguishability alone is profoundly ableist and disappointing, especially when considering the long history of violence exacted against disabled people for the crime of failing to uphold hegemonic standards of normativity.

Temple Grandin poses an answer to the question of whose bodies/minds ought to be valued and whose ought to be discredited and removed for the good of society. Her answer is a deeply disturbing one, and must concern those of us who wish to see the deconstruction of societal ableism, because both her own rhetoric and how she is rhetoricized serve only to perpetuate it.

07 August 2013

A Guide to Sighted Allyhood

A wonderful Blind friend of mine shared this earlier today and gave permission to repost here so many more people could see this. Ideas derive from direct and indirect input from various blind people.

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So I posted yesterday about how allyhood is, to borrow Spectra Speak's words, demonstrated through relationships, not just rhetoric. Here are some practical day-to-day tips on how you can demonstrate sighted allyhood in your relationships with Blind people. While I think most of these tips are pretty universal, I don't speak for all Blind people. Some people may have another opinion. If you're Blind/Low vision, feel free to add or amend.
 
Inform any and all blind people that may pass through the area of exactly where you move anything.

If a cashier, service person, or just anyone tries to hand your blind friend's money, credit card, ID, etc. back to you, make your hands unavailable so they're actually forced to give it back to the rightful owner.
 
When people try to speak to your blind friend through you, force direct communication. Example:
Waitperson: Does she take cream in her coffee?
You: I don't know, why don't you ask them directly?
Blind friend: [answers for themselves]
 
Include image descriptions. On Facebook, Tumblr, in your class presentations, during casual conversations when you show friends a photo of your dog. Not sure how? Ask the very people who will be benefiting from your descriptions about their preferences.

If you're not sure whether a blind individual can or can't do something, don't assume--ask.
 
Let your blind friend take the lead in sighted-guide etiquette. You may have learned something else, but individuals have their own preferences for how to be guided.
 
Some blind people have ways of identifying people, such as by the sound of someone's voice, footsteps, their perfume/cologne, their hands (if in contact), based on context, and some don't. Always better to play it safe and identify yourself. Playing the "Who am I? Guess!" game is inappropriate.
 
Understand that not all types of blindness are the same and many blind people have residual vision. Recognize that every blind person you know has a unique experience.
 
The Blind community is a cross-section of society and includes people with many other intersecting identities.
 
Keep in mind that blind people often have non-visual methods of getting the same information you get visually. Just because you do it visually doesn't always mean a blind person can't do it.
 
Avoid phrases like "over here", "over there," "that way", etc. These phrases only make sense if you can see where someone is pointing, and what they're pointing to. Instead, use terms like "behind us", "to your right", "at eleven o'clock". 
 
Remember that most blind people can't see you nod or shake your head, so you have to respond more explicitly, by saying "yes", "no", using pro-tactile, etc.
 
In group settings, it can be hard to know if someone is addressing you specifically or not. When addressing a blind person directly in spoken language, it helps to either add their name to the sentence or touch them lightly while you address them if you don't know their name. 
 
Treat a cane as an extension of the person's body. If you wouldn't touch their arm or leg without permission, don't touch or move their cane without permission. Grabbing a Blind person's cane is akin to someone blindfolding you. It's an act of power and control.
 
Remember that guide dogs with their harnesses on are working. Ask the blind person's permission before interacting with their guide dog.
 
Asking blind people questions like how long they've been blind, and what caused their blindness are not appropriate conversation-starters. Even if you're really curious, they're best reserved for once you get to know the person better.
 
If you are asking to help you determine something else, get to the core of the issue, e.g. "What's your preferred reading format?" or "Do you need me to guide you?" A lot of times the answer is more related to how well the person you're asking knows the area, if they are braille-literate, etc.
 
Offer help, don't insist. If the blind person declines the offer, respect their wishes.
 
When handing a blind person something, put it in their hand. Even people who have residual vision have a small chance of finding your outstretched hand, the coffee sitting on the table, etc. 
 
Initiate handshakes by finding the blind person's hand and shaking. Ask permission before giving hugs. Having someone hug you without warning can be rather startling. 
 
In Deaf spaces, confirm Deaf interpreters for any known Deaf-Blind attendees and have Deaf interpreters on stand-by in case any show up last-minute.
 
In Deaf spaces, you can get a Blind person's attention the same way you would a Deaf person who isn't looking in your direction--tapping on the shoulder, banging on the table, stomping on a wooden floor, etc. From there, you can allow the person to adjust themselves according to their communication needs. They will naturally increase/decrease the distance between you, or establish tracking/tactile communication as needed.
 
Many Blind people get ignored in group settings. Introduce your Blind friends to other people and make a conscious effort to include them in conversations. Ask them if there is anyone they're looking for and connect them with that person if you can find them. 
 
Inform other sighted people about Blind accessibility. Model accessibility when others don't know and remind people when they forget. Calling people out is best done in private conversations. They're more likely to respond when done in a non-face-threatening way.
 
Remember that the blind people in your life may be willing to educate at times, but that does not mean that we are obligated to educate you at all times. The Internet is a great resource for general questions like "How do blind people use computers?"
 
Remember that allyhood is not just about saying, but doing.

06 August 2013

A Brief Introduction to Sex, Gender, Sexuality, and Romance

Note: I made a few edits regarding sex assigned at birth. I had originally intended to explain this concept rather than arbitrarily attribute sex to genitals, but I did not and the mistakes were brought to my attention.

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Sex is the way people's genitals lead to social expectations that will be assigned at birth. People born with vaginas tend to be female-assigned at birth. People born with penises and testicles tend to be male-assigned at birth. People born with indeterminate or other forms of genitals tend to be assigned intersex, though many such people will actually be assigned as either female or male and raised as girls or boys.

Gender is individually and socially/culturally determined. Most people identify as men or women —  these are the binary genders — some people do not.

Gender identity is the way a person feels about their gender. It often but does not always correspond to the sex assigned at birth. Many men are male assigned at birth, and many women are female assigned at birth. These people are cisgender, or more specifically, cis men or cis women. Some people who were male assigned at birth identify as women; these people are transgender, and specifically, trans women. Some people who were female assigned at birth identify as men; these people are also transgender, and specifically, trans men. Some transgender people undergo sex-change operations so that they feel their bodies better match their gender identities. Some transgender people do not. Some men have penises and some men do not. Some women have vaginas and some women do not. Gender does not necessarily have anything to do with sex.

Other people, regardless of sex assigned at birth, identify as genders other than men or women. Anyone who does not identify as a man or a woman is said to be non-binary because they do not fall within either of the two binary genders. Another umbrella term for all such people is genderqueer. An umbrella term for all people who are not cisgender is trans* (with the asterisk). Some examples of other non-binary genders are agender, genderless, third gender, two-spirit, genderfluid, or androgynous.

Gender expression is the way a person outwardly shows their gender. This has to do with the way a person chooses to speak, dress, arrange their hair, move, or otherwise use their body. For most people, gender expression matches their gender identity. For people who may be more genderfluid, genderfuck, or androgynous, or for people for whom it is not safe or comfortable to be out about their gender identity, their gender identity may  not match their gender expression.

Sexual orientation refers to the pool of people toward whom a person might experience sexual attraction or desire. Straight (or heterosexual) people tend to be men or women; straight men might be sexually attracted to any woman, whereas straight women might be sexually attracted to any man. Gay or lesbian (or homosexual) people tend to be men or women; gay men might be sexually attracted to any man, whereas gay or lesbian women might be sexually attracted to any woman. Bisexual people might be sexually attracted to any man or woman. Pansexual people might be sexually attracted to people of any gender identity. Asexual people generally never experience sexual attraction toward other people regardless of gender. People who are not straight are sexual minorities by statistical reality. Another term that is controversial in some circles but which has been largely reclaimed to refer to anyone who isn't straight is queer.

Romantic orientation refers to the pool of people toward whom a person might experience romantic attraction or desire. Heteroromantic people tend to be men or women; heteroromantic men might be romantically attracted to any woman, whereas heteroromantic women might be romantically attracted to any man. Homoromantic people tend to be men or women; homoromantic men might be romantically attracted to any man, whereas homoromantic women might be romantically attracted to any woman. Biromantic people might be romantically attracted to any man or woman. Panromantic people might be romantically attracted to people of any gender identity. Aromantic people generally never experience romantically attraction toward other people regardless of gender.

Romantic attraction is not the same as sexual attraction. People may be romantically attracted without ever being sexually attracted, and other people may be sexually attracted without ever being romantically attracted. While romantic and sexual orientations usually align for most people, this is not always the case.

Sexual and romantic attraction are also not the same as sexual and romantic behavior. A gay man might marry and have sex with a straight woman. This does not change his sexual orientation. It only reflects his sexual behavior. An asexual person might have sex with a sexual person. This does not make the asexual suddenly not asexual. It only reflects their sexual behavior. A straight, sexual person might choose never to have sex in their entire life. This choice does not mean that the person has become asexual. The person has become celibate. Celibacy is a choice. Just as someone can attend services or participate in rituals of a religion to which they do not belong without that making the person a convert, a person can engage in sexual activities inconsistent with their orientation and that does not chanage their orientation.

Asexuality is an orientation. Asexual romantic relationships are not platonic friendships; they are asexual romantic relationships. Romantic relationships, whether the people involved are asexual or sexual, are different from platonic friendships.

Sex, gender identity, gender expression, romantic orientation, and sexual orientation are five separate attributes for each person. One does not necessarily follow the other, and there are almost infinite number of combinations of sex, gender identity, gender expression, romantic orientation, and sexual orientation that a person could have.

People can also be monoamorous, or interested and desiring only relationships involving two people (one partner), or polyamorous, or interested and desiring relationships involving more than two people (more than one partner). These designations and desires also have nothing to do with any of the other characteristics already discussed.

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Please feel free to correct me in the comments if you feel I have missed something or explained something incorrectly.