differing perspectives

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.

tl;dr 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.

Autism language politics and history

Some people emphatically prefer to be called people with autism. Others get very offended. Some people emphatically prefer to be called autistic people. Others get very offended. There are reasons for all of that.

They have to do with the history of the intellectual and developmental disability community, the autism parent community, and the specific autistic self advocacy community.

For intellectual and developmental disability:

  • Most self advocates have a very strong preference for person-first language
  • Person-first language in this concept means “I am a PERSON, and I am not going to allow you to treat me as a disability case study, nor am I going to tolerate your diagnostic overshadowing.”

Autism is a developmental disability. There is a highly visible and destructive community of parents who consider themselves to be afflicted with their child’s autism. There is an autistic self advocacy community that developed in part specifically due to the need to counteract the harm being done by autism parents. The language someone prefers will often depend on which of these facts seems most important at a given time.

Regarding developmental disability.

  • Folks who are primarily involved in the IDD self advocacy community usually prefer to be called people with autism
  • This is for the same reasons people with any sort of developmental disability usually prefer person first language
  • In that context, “person with autism” means “I am a PERSON, and you are not going to treat me like an autistic specimen.”

Regarding the destructive autism parent community:

  • This parent community pushes the agenda of parents who believe that their child’s autism is a horrible tragedy that befell their parents and family
  • They call themselves the autism community, but they consistently refuse to include or listen to autistic self advocates (especially adult self advocates). They only care about neurotypical parent perspectives (and only from parents who think autism is horrifying)
  • They promote things like intense behavioral therapy for young children, institutionalization, group homes, sheltered workshops and genetic research aimed at developing prenatal testing. They do not listen to autistic self advocates who object to these things.
  • They don’t care about the priorities of autistic self advocates. They do not do any work on issues such as self-directed adult services, enforcing the Olmstead mandate to provide services in the community rather than institutions, or research into skills for listening to people whose communication is atypical
  • These parents have an emphatic preference for person first language. They say “people with autism.”
  • What they mean by this is “Autism is NOT a part of who my child is, it’s an evil brain slug attached to their head, and I want to remove it at all costs.”

There is also an autistic self advocacy community. It developed in significant part to counteract the harm done by the autism parent community:

  • A lot of the agenda of the autistic self advocacy community is the same as the IDD community and pursued in cooperation with the IDD community
  • But there is also a lot of work that’s specifically about countering the harm that has been done by the autism parent community
  • Much of the worst harm done by the parent community comes from the cultural consensus that autism is like an evil brain slug, and that any amount of brutality is a good thing if it might mean that the slug shrinks or dies
  • For this reason, participants in the autistic self advocacy community generally have a very strong objection to person first language
  • They call themselves autistic or Autistic.
  • In this context, “autistic person” means “Autism is part of who I am. I’m ok. Stop trying to get me to hate myself. You do not need to remove autism to make me into a full person. We are already people. Stop physically and emotionally mutilating people in the name of treatment.”

Neither set of self advocates are wrong. Both positions are legitimate and important to be aware of. In order to know what someone means by their language choices, you have to consider the context.