People with disabilities are worthy of money and effort

In the part of special education community that promotes inclusive education, I often hear advocates say things like “inclusion doesn’t have to be hard,” “inclusion doesn’t have to be expensive,” and “inclusion doesn’t require special skills.”

This isn’t really true, unless we exclude a lot of people from “inclusion”. Some access needs are easy to meet; many are not. We can bring some people in without too much trouble. In order to commit to full inclusion, we’re going to have to be willing to spend money, acquire expertise, do hard things, and make changes.

For instance, people who can’t rely on speech as their primary means of communication need support learning to communicate. This is inherently expensive:

  • They usually need expensive devices
  • (The cheapest good option is an iPad with a $200 app; some people need dedicated devices that cost upwards of $10,000.)
  • They also usually need therapy
  • Having a communication device doesn’t solve all of someone’s problems; they also have to learn how to use it
  • (And they usually need help learning how)
  • Or they need something like RPM, which is low-tech but requires twice-daily 1:1 lessons which use scripts that generally have to be prepared in advance specifically for that student.
  • If they are in school, they need teachers who know how to teach them (which generally means that experts have to teach their teachers how.)
  • AAC communication is slower, and can be hard to interpret
  • Inclusion doesn’t happen automatically; teachers have to learn how to make sure AAC users are able to participate and be heard in class
  • (Eg: If someone isn’t using complete sentences yet, it can be hard to know what they mean. You have to be willing and able to do the work of helping them to clarify).
  • (And: if someone responds slowly, you have to proactively make sure they get a chance to express their thoughts in class discussions)
  • All of this requires money, expertise, effort, and willingness to change
  • If we’re only willing to consider cheap options, people who need communication support are left behind

Another example: People need to be able to get into the building

  • Many buildings were built incorrectly
  • They may have large flights of stairs at all entrances
  • They may have many floors that can only be reached by stairs
  • They may not have any accessible bathrooms
  • The bathrooms may all be too small to enter in a wheelchair (which means there’s no way to fix them without moving walls)
  • All of the doors may be big and heavy
  • Often, there’s no cheap way to fix this
  • There may be inexpensive starting places; we can’t stop there
  • If we care about including people with mobility disabilities, we have to be willing to spend money to fix buildings
  • We have to hire architects who have expertise in accessibility
  • We have to make sure that people with mobility disabilities are part of the conversation, even if no one with a mobility disability has expressed interest in accessing the building recently
  • We have to be willing to make changes that make the building look different, in ways that may mean changing or destroying things that longtime users of the building are emotionally attached to.

We can start with the low hanging fruit; we should not pretend that all fruit is low-hanging. A lot of access needs are inherently expensive. There are a lot of needs that no one even knows how to meet yet; the expertise we need does not yet exist. If we want to commit to full inclusion of children with disabilities in schools; if we want to fully include adults in all aspects of society, we need to be in it for the long haul.

Short version: In order to stop excluding people with disabilities, we’re going to have to spend money. We’re going to have to bring in expertise and develop expertise. We’re going to have to do difficult things. We’re going to have to make changes. We’re going to have to start seeing this as normal. People with disabilities are worthy of money and effort.

Ableist hostility disguised as friendliness

Some people relate to people with disabilities in a dangerous and confusing way. They see themselves as helpers, and at first they seem to really like the person. Then the helper suddenly become aggressively hostile, and angry about the disabled person’s limitations or personality (even though they have not changed in any significant way since they started spending time together). Often, this is because the helper expected their wonderful attention to erase all of the person’s limitations, and they get angry when it doesn’t.

The logic works something like this:

  • The helper thinks that they’re looking past the disability and seeing the “real person” underneath.
  • They expect that their kindness  will allow the “real person” to emerge from the shell of disability.
  • They really like “real person” they think they are seeing, and they’re excited about their future plans for when that person emerges.
  • But the “real person” is actually figment of their imagination.

The disabled person is already real:

  • The helper doesn’t like this already-real disabled person very much
  • The helper ignores most of what the already-real person actually says, does, thinks, and feels.
  • They’re looking past the already-real person, and seeing the ghost of someone they’d like better.

This ends poorly:

  • The already-real person never turns into the ghost the helper is imagining
  • Disability stays important; it doesn’t go away when a helper tries to imagine it out of existence
  • Neither do all of the things the already-real disabled person thinks, feels, believes, and decides
  • They are who they are; the helper’s wishful thinking doesn’t turn them into someone else
  • The helper eventually notices that the already-real person isn’t becoming the ghost that they’ve been imagining
  • When the helper stop imagining the ghost, they notice that the already-real person is constantly doing, saying, feeling, believing, and deciding things that the helper hates
  • Then the helper gets furious and becomes openly hostile

The helper has actually been hostile to the disabled person the whole time

  • They never wanted to spend time around the already-real disabled person; they wanted someone else
  • (They probably didn’t realize this)
  • At first, they tried to make the already-real disabled person go away by imagining that they were someone else
  • (And by being kind to that imaginary person)
  • When they stop believing in the imaginary person, they become openly hostile to the real person

Short version: Sometimes ableist hostility doesn’t look like hostility at first. Sometimes people who are unable or unwilling to respect disabled people seem friendly at first. They try to look past disability, and they interact with an imaginary nondisabled person instead of the real disabled person. They’re kind to the person they’re imagining, even though they find the real person completely unacceptable. Eventually they notice the real person and become openly hostile. The disabled person’s behavior has not changed; the ableist’s perception of it has. When someone does this to you, it can be very confusing — you were open about your disability from the beginning, and it seemed like they were ok with that, until they suddenly weren’t. If this has happened to you, you are not alone.

Diagnosis only goes so far

The way medical diagnosis works can often make disabled people feel fake. (Any kind of disabled people, including people with mental illness or chronic illness). There’s a widespread culture misperception that real disabled people have a clear professional diagnosis, and that everyone else is just faking it for attention or something. It doesn’t actually work that way. Diagnosis is more complicated than that.

People with disabilities are disabled whether or not anyone has diagnosed their disability. Diagnosis is an attempt to recognize the underlying reality (and often an attempt to get someone access to medical treatment or services.) But it doesn’t change the reality. Someone diagnosed today was already disabled yesterday. Many people are disabled for years or decades before they get access to accurate diagnosis. Being undiagnosed doesn’t necessarily mean you’re not disabled. It just means you haven’t been diagnosed with anything.

In addition, some conditions aren’t currently diagnosable, because they have not yet been identified and named by doctors. If a condition was discovered for the first time today, someone had probably already had it yesterday. And last year. And back and back and back. Being undiagnosed and currently-undiagnosable doesn’t mean that you’re fake. It just means that you don’t have an answer.

Even when there is a diagnosis, there is not always an explanation. Some diagnostic categories are vague and unsatisfying. Some diagnoses amount to a list of symptoms you already knew you had. These kinds of diagnoses allow your doctor to bill your insurance and may get you access to treatment, but they don’t always give you answers. Being diagnosed with something vague doesn’t mean you’re fake either. It just means that you don’t have an answer.
In addition, diagnostic categories are often approximations that don’t quite describe reality for everyone. It’s fairly common to meet diagnostic criteria imperfectly. Or to have an atypical form of a condition. This doesn’t mean you’re fake either. It just means that reality is more complicated than textbooks. (Being similar to the textbook also doesn’t mean that you are fake; it just means that sometimes the textbooks are right about some people.)

Even when diagnosis gives you a lot of answers, it often won’t give you all the answers you would like to have. Mostly disabilities are fairly poorly understood. For most people, disability involves significant amounts of uncertainty, and many unanswered questions.

I don’t want to overstate this. Sometimes diagnosis does get you real answers. Even when it doesn’t, it can be very important. Often, even without answers, diagnosis can make your life a lot better by getting you access to treatment, support, or accommodations. Diagnosis can also mean that someone gets treatment or support that keeps them alive. Diagnosis is often very important for any number of reasons. It’s just not the ultimate decider of who is and isn’t really disabled. Disabled people who aren’t diagnosed with something that fully explains their symptoms are real disabled people, and their needs matter just as much as anyone else’s do.

Short version: Disabled people are disabled whether or not they are diagnosed. Diagnosis recognizes reality; it doesn’t create it. There are a lot of reasons why some disabled people aren’t diagnosed, or aren’t fully diagnosed. Scroll up for more explanation of why that is.

“Choosing to be disabled”

Ableists often believe that “choosing to be disabled” is a major social problem. They aggressively believe that most disabilities aren’t real, and that people could stop being disabled if they’d just make better choices. They think most disabled people are fakers who just stay disabled out of laziness.

They may see accessibility and accommodations as “enabling”, and try to get them taken away. Or, they may try to force people into treatment (whether or not safe and effective treatment actually exists.) Or they may just be mean and hostile towards disabled people they encounter. Or any number of other things. This hurts all disabled people badly.

People with disabilities often feel like they have to prove that they are not faking, and that their disability isn’t a choice. This can lead us to worry a lot about whether we’re somehow doing this on purpose. In this state of mind, it’s really easy to find things that feel like evidence that we’re fake.

Disability usually involves tradeoffs. We can’t choose to have all of the same abilities as nondisabled people, but we often can make some choices about which abilities to prioritize. This can superficially look like “choosing to be disabled” if you don’t understand how disability works.
For instance:

Medications:

  • All medications have side effects
  • Managing the condition and the side effects can involve complicated tradeoffs
  • There is usually more than one option
  • It can often be a choice of what abilities you prioritize most, and which impairments are most tolerable
  • You may be able to choose to make any particular impairment go away
  • That doesn’t mean you could choose to be unimpaired
  • Ableists will think you are faking no matter which choices you make. They are wrong.

Mobility equipment:

  • People with mobility impairments often have more than one option, and there can be complex tradeoffs.
  • Eg, which is more important to someone?
  • Being able to go further without fatigue (in a power chair) or being able to ride in a regular car (with a collapsable wheelchair)?
  • Being able to travel a mile on the sidewalk (in a wheelchair), or being able to use all of the subway stops (by walking)?
  • Being able to get into inaccessible buildings (by walking), or being able to go out without being in pain (in a wheelchair)?
  • Retaining the ability to walk (by spending a lot of time doing physical therapy) or being able to take a full course load in college (by spending that time on studying and losing the ability to walk)?
  • No matter which choice you make, ableists who don’t understand disability will see it as “choosing to be disabled”. They are wrong.

There are any number of other examples, for every type of disability. This affects every kind of disability, including physical, sensory, cognitive, psychiatric, chronic illness, and the categories I forgot to mention.

Short version: We all have to make choices about how to manage our disabilities, and there are often complicated tradeoffs. No matter which choices we make, ableists will think we’re making the wrong ones. No matter which choices we make, ableists will think that we are faking.

In the face of this kind of hostility, it is easy to start doubting ourselves and believing that we’re fake and terrible. It helps to remember that the ableists don’t know what they are talking about (even if they are disabled themselves). Making choices about how to manage disability is just part of life. The ableists are not experts in how you should be living you life; they are wrong and they are mean.

Ideological predators

Content note: This post is about adults exploiting teenagers on the internet for validation. It’s about the ideological form; not the sexual form, but a lot of the underlying logic is similar. This is likely to be a difficult post for anyone who has an emotional connection to this issue.

Some some predators use vulnerable people as validation objects to make their  flawed ideologies feel true. This can happen between people of any age, but it’s particularly common for adult predators to do this to teenage victims they meet online. Adults with bad ideas manipulate teenagers into praising them. They offer false respect to teenagers who are starved for respectful adult attention. They make teenagers depend on them emotionally in completely inappropriate ways. Then they lash out when the teenagers start to notice flaws in their ideas. Teenagers can get hurt very, very badly by this.

From a teenage perspective, relationships with ideological predators can feel really good at first before the predator starts lashing out. As a teenager, you’re often at the beginning of noticing that there’s a lot wrong with the world, and that you and others have the power to make it much better. But seeing yourself as powerful enough to change the world isn’t the same as knowing how to do it. Changing the world is hard work that requires skills that are difficult to acquire. It also requires connections with others doing the same work, which can be really hard to build for teenagers without much control over their lives. And teenagers who want to make the world better are often surrounded by adults who think their desire to do so is cute, and certainly not something to take seriously. (And who may not be taking the teenager seriously on any level). That’s degrading, and very, very hard to cope with.

And then a predator shows up online. At first, they’re this really interesting adult who at first seems to take you much more seriously than anyone else does. Their ideas seem amazing, and they seem to be opening all kinds of possibilities for making the world better. They’re willing to spend endless hours talking to you. They listen to you when you are sad and lonely, and they tell you that you’re amazing and brilliant and that you deserve so much more respect than anyone is giving you. It feels really good to be exposed to an exciting new idea, and it feels even better when it’s coming in the form of conversations with an apparently experienced person you respect. And, support from an experienced person who really does respect you is an amazing thing. Sometimes teenagers get the real form of this online. And sometimes, a predator fakes respect in ways that end very, very poorly.

An emotional relationship with a predator falls apart at some point, because their ideas aren’t actually very good, and their respect for you wasn’t real. It turns out, they weren’t listening to you, they were using you as a mirror. They didn’t want respect and conversation, they wanted you to admire them. When you start noticing flaws in their bad ideas, you stop being useful as a mirror, and they stop wanting to support you. All the vulnerabilities you shared with them turn into weapons they wield against you. It’s excruciating, and it can be very, very hard to recover from.

Teenagers deserve to have adults in their lives who respect them and spend time talking to them about the world. Ideally, this should happen both on and offline. Ideological predators who want validation seek out teenagers who aren’t getting real respect from adults, and seduce them with fake respect. This shouldn’t happen to anyone, ever, but it’s unfortunately really common. (It’s not just teenagers this happens to, but teenagers are often particularly vulnerable because teenagers are often both very isolated and inexperienced with evaluating the merits of ideologies, political views, and effective approaches to activism.)

One of the most important red flags for ideological exploitation is: Do they respect your right to consider other perspectives, or do they want you to believe everything they say without question?

Nobody is right about everything; it is never reasonable for someone to want you to believe their ideas without question. You have the right to think for yourself. It is never ok for someone to be mean to you for asking questions or for reading about other perspectives. (Even if they’re right and the other perspective you’re reading is a dangerously bad idea that has hurt them personally.) No one has to be willing to talk to you about everything; they do need to respect your right to think for yourself. If someone is trying to persuade you to agree with them, they should expect that you will want to think about it and ask questions. That’s how conversations work when you are explaining something.

No one is the boss of your reading or your other media consumption. You get to decide what you want to read (and what you don’t want to read, and you don’t have to justify your reading choices to anyone. It’s a red flag if an adult tries to monitor your reading or aggressively tells you not to read people they disagree with. Or if they try to dictate who you are and aren’t allowed to talk to.
It’s also a bad sign if they refuse to explain to you why they disagree with a particular position, especially if they’re encouraging you to see them as a mentor. “Why do you think that?” and “What’s wrong with that?” or “Why is that idea harmful?” or “Why is this important?” are reasonable questions, and it’s not ok if they lash out at you for sincerely wanting to know.

(Even if they regularly get asked that question insincerely as a form of harassment, they still shouldn’t lash out at you. You aren’t doing that. You’re asking a question because you want to understand. It’s not your fault that mean people do something superficially similar. If they’ve spent hours and hours talking to you and saying how insightful you are, then they know you well enough to trust your sincerity. It’s not ok if everything they know about you suddenly flies out the window when you ask an uncomfortable question. Also, if they’re presenting themselves as a mentor figure and want you to trust them in that role, then it *is* their job to educate you, and part of educating people is answering their sincere questions respectfully.)

Which is related to another sign to watch out for — trustworthy people with good ideas are able to disagree with others respectfully. If someone is only willing to talk about ideas they agree with and ideas they have withering contempt for, that’s a really bad sign. Reasonable people have some positions they disagree with respectfully, and they also know that people can mistakenly be attracted to bad ideas for good reasons. No one has to be willing to respect all ideas or treat all positions as honorable; everyone has to be able to tolerate *some* disagreement respectfully. Reasonable people know that they’re not right about everything, and that sometimes they will find that people they initially disagreed with had a point.

If they can’t tolerate disagreement with anyone else, what they’re feeling for you is probably not real respect. They’re probably using you as a mirror; expecting you to reflect everything they say back to them, using your sincerity and enthusiasm to make it sound true and important. But you’re not a mirror; you’re a person. Even if everything they’re saying to you right now sounds amazingly true; eventually you will disagree with them about something you both care about. (No one is right 100% of the time, and it is normal for people who care about things to have some degree of disagreement.) Their talk about how insightful and wonderful you are will very, very likely melt away when you stop agreeing with them about everything. If they could tolerate disagreement, they’d be tolerating it from other people too.

Short version: Some adult predators use teenagers as ideological validation objects. They offer false respect to teenagers who are hungry for genuine respect from adults. The teenage victims are expected to become mirrors, enthusiastically reflecting back whatever the adult says, making it sound true and wise. Inevitably, eventually teenagers figure out that the adult isn’t 100% right about everything, and they start questioning their ideology. The adult predator then lashes out, and withdraws all of their false respect, leaving the teenager they have isolated to pick up the pieces. This is a horrible an inexcusable thing to do to someone. People have the right to think for themselves, and to ask questions. Adults who take it upon themselves to teach teenagers about the world have a particularly strong obligation to support them in thinking for themselves. If someone effusively praises you at first and then lashes out at you for questioning them or disagreeing, something is really wrong. It’s not your fault, and you’re not alone. People should not treat you that way.

Open letter to disability professionals

Dear disability professionals,

I’m not sure why, but I keep encountering disability professionals who try to deny that disability exists, or to downplay its importance.

It’s so extreme that disability professionals often try to convince people with disabilities that we are just like everybody else. Even when our differences are the reason that you have a job.

We are not just like everyone else. We are alike in that we are all human, with the same basic needs and capacities that go along with humanity. We are also different, in that we have disabilities and most people do not.

Disability exists. Disability is important. People with disabilities are different from most people people in ways that matter. And we need those differences to be speakable.

Our bodies are different. We can’t make this go away by smiling, being brave, and trying hard.

The differences in our bodies matter. Most people can do things that are physically impossible for us. Most people can do some things easily that are excruciatingly difficult for us. The specifics of which things these are depend on the person and the disability. They always exist. That’s what disability means, it means having a different kind of body, a body that can’t do certain kinds of things easily or at all.

For everyone, with and without disabilities, understanding the limits of what our bodies can do is a key life skill. Everyone’s safety depends on understanding that they do not have wings, and that they can’t fly. My safety also depends on understanding that I have impaired vision, motor coordination, and executive functioning. Understanding these things means I have chosen not to drive, and that I have found adaptive strategies that enable me to cook safely.

From my perspective, the fact that I don’t concentrate hard and try to drive isn’t so different from the fact that I don’t flap my wings and try to fly. All I’m doing is acknowledging physical reality, and making choices that fit with my understanding of reality. Some of the physical limitations on what my body can do are the normal limits that apply to all human bodies. Other physical limitations come from my disability. They’re all just physical facts, they’re all just things I need to take into account when I make decisions. 

But as a person with a disability, I learned young that only some limitations are ok to talk about. If I say “I can’t fly”, no one contradicts me. If I say “I can’t catch”, people say “just keep trying”. Both are physically impossible for me. Trying hard will not make either possible. Neither will being brave, smiling, or believing in myself.

For some reason, many disability professionals seem to believe that honesty about our limitations will somehow destroy our self esteem. Actually, the opposite is the case. They want us to believe that if we just smile and keep trying, we can do anything that we put our minds to. But it’s a lie, and we get hurt badly when we believe it.

When professionals refuse to accept our limitations, they force us to attempt impossible tasks over and over. There is nothing positive about this experience. We try and fail, and we watch others our age succeed at the same tasks. If we believe that we can do whatever we put our minds to, then we feel like it’s our fault for not trying hard enough.

It hurts when people yell at us for failing, and it hurts when people plaster on smiles and urge us to smile and keep trying. “Come on, you can do it!” doesn’t sound like encouragement when you know that you will fail. It feels like being told that you’re somehow screwing up on purpose, and that if you would just decide to be a better person, you’d suddenly be about to do it. This kind of thing can go on for years, and it leaves scars. We often come to feel like we are unworthy people, and that there’s something deeply flawed about who we are. 

It’s very, very important that people with disabilities understand that we are disabled. We need to know that our bodies are different, and that some things that are possible for most other people aren’t possible for us. We can’t stop being disabled through an act of will. Our bodies limit us. That is not a moral failing. It’s just a fact of physical reality. And it needs to be speakable.

Our bodies and our disabilities are nothing to be ashamed of.  We don’t have to be different to be good enough. We don’t have to be nondisabled to do things that matter. We don’t have to do impossible things to be worthy of love and respect. We’re people, and who we are is ok.

And for professionals – please understand that when you refuse to acknowledge disability, you are teaching people with disabilities to be ashamed of themselves. This is probably not your intention, but it’s an inevitable consequence of making disability unspeakable.

It is much better to tell the truth. It is much better to support us in understanding who we really are, than to push us to believe in an impossible dream. I could dream of flying or playing baseball, but it wouldn’t get me anywhere. By living in the real world and working with the body I actually have, I can do things that matter. And so can all of your clients. There is no need for silence, evasion, or shame. Disability is important, and it’s much easier to live with when we can face it honestly.

The dangers of “adults are terrible”

Content note: This post is about abuse in a way that may not be obvious from the first paragraph.

I’ve seen adults and teenagers on Tumblr and other places saying things like “adults are terrible” or “never trust adults”. Sometimes it’s a joke, but often people mean it.

I think this is creating a dangerous situation for teenagers. Predators can use that sentiment to isolate teenagers, and to groom them for emotional, physical, or sexual abuse.

If a predator convinces a teenage victim that adults are inherently untrustworthy, they have made it much easier to get away with abuse by making it harder to get outside perspective:

  • If an abuser convinces a teenager not to trust any other adults, they’ve effectively prevented them from asking any other adults for perspective if something feels wrong
  • Which makes it a lot easier for them to convince the teenager that abuse is normal, and that they have to accept abuse in order to get close to anyone
  • It’s much harder to get away with abusing a teenager who can ask other experienced adults “I’m feeling uncomfortable with this. Is this normal? What do you think?”
  • Teenagers who believe that they have nowhere to turn can be very, very vulnerable.

For teenagers, I think this is worth keeping in mind:

  • The adult saying “adults are horrible” is an adult. Saying that doesn’t make them any less of an adult.
  • They want you to think that adults are bad, and they also want you to think that *they* are good
  • So what they’re really saying, usually, is “trust me, but don’t listen to any other adults”.
  • That would only be warranted if they were somehow the only good adult in the world. And they’re *not*.
  • There are a lot of good adults in the world. Adults who can be good friends to teenagers will not want to be the only adult in your life.
  • People who try to isolate you are not good friends.

There are a lot of horrible adults in the world, but adulthood is not horrible in and of itself. Being an adult just means that you made it to a particular age, and that you’ve hopefully learned certain things about the world. When an adult who spends a lot of time with teenagers also goes on and on about how bad adults are, it’s usually a bad sign.

Short version: There are a lot of bad adults in the world, and also a lot of good adults. Some adults try to convince teenagers that good adults are very rare. Those adults are dangerous, and it’s important not to tolerate that kind of attitude towards teenagers.

An example of both types of mental health stigma

Content note: This post contains both criticism of and respect for the mental health system. If you find either upsetting, it’s likely that this post will bother you.

I wrote recently about two distinct kinds of mental illness stigma. There’s dismissiveness, where people aggressively deny that someone’s mental illness is real. There’s dehumanization, where people believe that someone’s mental illness is real, and treat them as though their condition makes them less than fully human. Both are common, and people who have experienced one more than the other tend to have very different perceptions of the mental health system.

One example of difference in perception: Mental health advocates often say things like “Medication for mental illness is just like insulin for a diabetic”. People who have mostly faced dismissiveness often see this as validation; people who have mostly faced dehumanization often see it as a threat.

From the perspective of someone who has mostly experienced dismissiveness, it might sound like this:

  • I’m really glad that someone understands how serious my medical condition is
  • People have told me over and over that I don’t have a real problem
  • Or that medication is just a crutch I’m using to avoid dealing with things
  • Or that it’s whiny to want medication
  • Or they might say things like “You’re not sick. People with cancer are sick.”
  • My medication is really, really necessary
  • Or even: my medication saved my life, and I think I’d die if I stopped taking it.
  • I’ve had to fight my doctor, my family, or my insurance company to get access to the medication I need.
  • It messes up my life when people don’t take my need for medication seriously.
  • I’m glad someone gets it about how real my medical condition is, and how important it is for me to have access to medication.

For someone who has mostly faced dehumanization, a statement like that might sound more like this:

  • People have treated me like I’m not a person, and use analogies to physical conditions to justify it.
  • People have made me take medication I didn’t want to take, that did things to my brain and body that I didn’t like.
  • They’ve done this to me in order to change how I felt, thought, or behaved.
  • They’ve told me that what they were doing to me was just like giving insulin to a diabetic.
  • And that this meant I could not possibly have any valid reason to object to the treatment they wanted me to have.
  • But diabetes and mental illness aren’t actually all that similar.
  • Insulin-dependent diabetics who refuse treatment die. When I refused treatment, I didn’t die. It’s not the same. I’m not sick in that way.
  • The way I am is not the same as having a life-threatening physical condition with an obvious straightforward life-sustaining treatment.
  • It’s important that people understand the difference.
  • When they don’t understand the difference, they treat me as though I’m not a real person unless I am on the medication they want me to be on.
  • People say “unmedicated” like it means violent, dangerous, or incapable of understanding something. It doesn’t. It just means that someone isn’t taking medication. That doesn’t tell you anything in itself.
  • I need people to respect me as a person, and respect my right to make treatment decisions. When they don’t, things can get really bad really fast.

There are numerous other examples of things like this. Most things people say about mental health look very different to people who have primarily experienced dismissiveness than they do to people who have primarily experienced dehumanization. Neither perspective is right or wrong exactly; both are important and incomplete.

Access to psychiatric medication is important; respect for the humanity and human rights of people who have been diagnosed with mental health conditions is also important. Things aren’t great for anyone, and they could be a lot better for everyone.

Short version: Mental health discourse often looks very different depending on perspective. People who have mostly faced dismissiveness tend to see things one way; people who have mostly faced dehumanization tend to see things a different way. Scroll up for a concrete example.

Two kinds of mental health stigma

Content note: This post contains both criticism of and respect for the mental health system. If you find one or the other upsetting, this post will likely bother you.

There are two basic kinds of mental health stigma: dismissiveness, and dehumanization. Mental health conversations tend to have trouble acknowledging both at the same time — usually it’s at most one.

Dismissiveness stigma is when people deny the reality of mental illnesses. This plays out in a number of ways. One classic example of dismissiveness is “antidepressants are just a tool of capitalism to stop people from noticing that things are wrong”, or “Stop complaining. There are people with real problems”. There are many other examples.

Dehumanization stigma is when people deny the humanity of people with mental illnesses. A classic example of this is people who believe that the purpose of mental health treatment is to reveal the real person underneath — and that therefore, any objections they might make to the treatment “aren’t the real them talking”. There are many other examples of this as well.

Dismissiveness and dehumanization are both major problems. They’re both real, and they both do a lot of damage, even up to the point of costing people their lives.

People tend to perceive the mental health system very differently based on which kind of stigma looms largest for them. For a lot of people, it’s much easier to see one type than the other.

People who mostly experience dismissiveness often see the psych system this way:

  • No one took my problem seriously
  • I was scared to turn anywhere for help
  • Once I finally took the leap and went to therapy, things got so much better
  • Or, once I finally stared medication, things got so much better
  • (Or even: medication and therapy saved my life).
  • (Or even: I’m so glad people finally pushed me to get treatment; they were right.)
  • I wish people wouldn’t be so afraid. I wish everyone had access to this.
  • We need to fight stigma so that people can get the help they need.
  • (And to reform laws so that everyone has access).

People who mostly experience dehumanization often see it more like this:

  • When I entered the psych system, people treated me like I wasn’t a person
  • They forced me to take medication I didn’t want to take
  • The drugs didn’t work, and had harmful side effects
  • When I complained, they treated it as a symptom and raised the dose
  • They forced me to be in therapy I didn’t want to be in, and that made me worse
  • When I tried to advocate for myself, people treated it as a symptom, and no one took me seriously
  • Things only got better for me when I stopped therapy and/or medication and started a different approach
  • (Or even: stopping therapy and/or medication saved my life)
  • I wish people wouldn’t be so uncritical of a system that hurt me
  • I wish “unmedicated” wasn’t used as a slur implying that people who make the choices I make are all terrible people
  • We need to warn people, and reform the laws and systems that allow people to be treated this way

Some people’s experiences in the mental health system are positive in ways that nothing else is; some people’s experiences are horrifying. (And for a lot of people, things are more mixed). Neither type of experience is universally representative; both are real and common. Both matter, and need to be part of the conversation.

When most of someone’s experiences are with dehumanization, it can be hard to understand that dismissiveness is also a problem. Or why anyone would regard mental health care as positive, or lack of access to it as a problem. They may also find the terminology of “mental illness” repugnant, and have a strong preference for “crazy”. But it really is the case that for some people, mental healthcare including therapy and medication is a really good thing. And that for some people, the biggest problem with the system is difficulty accessing it (either because others discourage it, or because it’s too expensive.)

When most of someone’s experiences are with dismissiveness, it can be hard to understand that the dehumanization experiences are also real. (Particularly for people who were really afraid of mental health care and then had a transformative good experience with it.) It can be hard to understand why someone would prefer an apparently pejorative term like “crazy” over an apparently-netural term like “mental illness”. It can seem like people must be exaggerating, or that these things only happened in the past, or something like that. But dehumanization is still a problem now, and fighting treatment stigma will not address that problem.

Both dehumanization and dismissiveness are important barriers to people being treated as they ought to be. Because of both types of stigma, people lack access to help they vitally need. For some people, that help is treatment. For others, it’s access to resources like housing, respite, and assistance with food. For a lot of people, it’s both. People’s very real mental health struggles should not be dismissed; neither should the humanity and human rights of people with mental illnesses be denied.

Short version: There are two types of mental health stigma: dismissiveness, and dehumanization. Dismissiveness is when people deny the reality of your condition; dehumanization is when people think that your condition makes you less than human. Dismissiveness is often made better by the mental health system; dehumanization is often made worse. People whose experience is primarily in one category often don’t understand that the other category exists. Both matter, and both need to be part of the conversation.