Disability: Being Broken

Much of the time I feel broken. A fair amount of the time I don’t simply feel that way, I’m told that I’m that way. Not overtly, no, but in the way that people talk about mental illness, the way that people talk about people who don’t have good jobs straight out of college, in the way people talk about women who have experienced any sexual trauma…these things tell me that I’m broken. I once had a friend tell me that he could never be the parent of a disabled child because you would sink your whole life into them and they would still be subpar. As someone who has multiple birth defects and major mental illness, that fucked with me.

I’m told that I need to fix things about myself. I need to be less judgmental and more accepting. I need to stop reacting so quickly and harshly to things. I need to make my anxiety go away, and make my depression go away. I need to change how I feel about the world and myself, change how I perceive everything in order to be “happier”. I’m told that I need to change myself, fix myself, retrain my brain so that it’s different from what it is now and so that I behave differently in order to be whole and acceptable. I have been bribed and threatened by people who are well-meaning to get me into therapy to “fix” me.

And I now work in an autism program. And I hear the same kind of language. I’ve been reading blogs about autism and hearing about the ways that children are asked to ignore their own perceptions, feelings, and understandings so as to act in a way that is acceptable to others. I have begun to understand that in many ways, people to help those with autism still view autism as a disease that infects someone, a broken piece of their child that needs to be banished so they can have the real child back.

That’s how I feel when I talk about my eating disorder. People have literally told me to view the disorder as something separate from me, almost like it’s possessing me, like it’s broken and if I can just fight it away then I will be back and the disease will be gone. I’ve been broken or taken over by this bad thing, but if I could just get past it, throw it away, change it, then I would be normal and ok again.

Except that that’s not how mental illness or disability works. The way someone who is autistic views the world isn’t broken: it’s different. What is broken is the way that we treat those who see things differently or act differently. We expect them to move 99% of the way towards what we view as normal so that we can be comfortable, and then we make a 1% accommodation to adjust to them. We don’t allow that some people might be far more happy if they were allowed to act and think in a way that is radically different from the way we do.

As an example, I will always be more comfortable thinking in terms of my own safety and trying to avoid things that will be triggering for me: I will probably never be able to spend much time in a kitchen making food on my own. I will never cook for others. I will always feel more comfortable if others will simply accept what I say about my disorder and don’t question my experience. I will always feel more comfortable if I can move my hands when I’m anxious, or if I can twitch a body part when I have too much energy. Asking me to stop that doesn’t make my anxiety go away: it simply gives me no way to deal with it.

To take a more extreme example, for a lot of kids with autism, they have extreme sensory sensitivities. They can hear or feel things you or I never could. So they may never feel comfortable being in crowded or noisy places. And that doesn’t mean their broken. It doesn’t mean we should force them to deal with those situations. It means that we should accept what they can deal with, accept how they perceive as legitimate.

Instead of asking those of us who might perceive or experience the world differently from you to force ourselves into mental contortions so that we can look and act the way you might expect, maybe people should consider that we’re not broken. There is absolutely nothing broken about the fact that my brain likes to organize things A LOT, and thus it tends towards black and white thinking. There are useful elements to this and unhelpful elements to it. Telling me that it’s wrong will not make it go away, and even if I COULD stop acting in a black and white fashion it wouldn’t necessarily make me happier.

Making adjustments so that I can have time to think before jumping to black and white thinking, or encouraging me to rely on it in areas where categorization is useful but giving me some other tools to check it in my personal life: THOSE are helpful. They don’t try to fix me. They don’t tell me I’m broken or wrong in any way or that if I could just be more like other people or adjust my thoughts and my life everything would be ok. They do tell me that since I function differently than a lot of people I might need some help fitting myself and my perceptions into the larger scheme of things. Society is set up for the “norm”. It’s not set up for me. Which means I need some help getting myself to fit into the way society works. I need help functioning sometimes. But I can do that and still not give up the pieces of me that others view as broken. I can retain my mind and simply try to shape self and world to fit together.

Neurodivergence. We diverge from the norm. We’re not broken. We just fit differently. And it’s not all our job to make ourselves the right shape to fit into society, because sometimes we’re not that flexible. Sometimes society has to be flexible as well. I don’t want to feel broken anymore. I don’t want people to tell me I’m broken anymore. I have some more work to do to be able to function and to fit myself to society, but so do most people. I want that to be ok. I want it to be ok if I’m at a party and I say that I have to leave because it’s too noisy for me or because people are talking about diets. I want it to be ok if I show up to a party wearing fuzzy footie pajamas because I had a rough day and I need the sensory calming (see me up there in my onesie? That was the best party I’ve ever been to). There is nothing WRONG with these things. They don’t make me unhappy. What makes me unhappy is when people can’t accept that that’s how I cope. I am not a problem.

Frustrations with the DSM

I live in a very psych oriented world. I work for a nonprofit that provides services to kids with autism and developmental disabilities and general mental health problems. I spent at least five hours a week in therapy. I talk a lot about mental health, I care a lot about mental health, and a few of my friends and I just started throwing around the idea of creating a skepticism and psychology conference (SO EXCITED). So I’m thinking (as per usual) about mental health.

One of the talks at SkepTech (by the fabulous Stephanie Zvan) was about psychometrics, which is “The science of measuring mental capacities and processes.” She talked a fair amount about how we often define certain disorders based on our stereotypes: we view autism as a boy’s disorder, so the diagnostic criteria are slanted towards how autism presents in boys. I think this is a very important thing to address (especially in terms of race. UGH), and I think the place to start is with the DSM (the psychology diagnostic manual). The DSM is very much a quantitative measure. For eating disorders for example, it lists particular weights, numbers of binges and purges per week, and length of the persistence of the disorder as diagnostic criteria. In many ways, these concrete diagnostic tools are incredibly helpful: they allow insurance to see who to treat or not and they allow clinicians to have something more solid than personal judgment to use in their diagnoses. That’s important. We do need some element of consistency, we need some science in our diagnostic tools.

The problem shows up in the fact that many of these diagnoses are written around what is considered the typical case and doesn’t necessarily allow for any variation. It also doesn’t address the fact that many people have lots of symptoms that don’t quite fit into a neat diagnostic category. In many ways it’s far too rigid. Diagnoses that involve NOS (not otherwise specified) often aren’t covered by insurance, aren’t included in research, and aren’t afforded as much respect as serious problems by clinicians or the individuals diagnosed.

This is a really big deal because it limits who can access mental health care based upon demographic or personal variation. Males with depression generally exhibit it in very different ways from females, and they are not diagnosed as often because they aren’t viewed as the typical depression sufferers. People of color are not diagnosed with eating disorders nearly as often as white girls (particularly teens).

So how can we both create helpful categories AND capture the wild diversity of mental illness? How can we approach mental illness not as a checklist of symptoms that we address and move the individual back to the neurotypical end of the spectrum? First and foremost, insurance needs to NOT be tied to strict diagnosis. That is not fair to individuals who might need preventative therapy or interventions, or those who want to catch a disorder before it becomes so serious that it interferes with their life. It is also not fair to those individuals who have a serious mental illness that is wreaking havoc on them, but who don’t fall neatly into a category. But it’s also unfair to those who DO fall into the category, because it might ignore any other symptoms or problems that could be contributing to their diagnosis. OF COURSE labeling some patterns and similarities can be helpful because it allows us to conduct research and to develop treatments that work for people with similar issues. But these labels should not be considered so strict, should not be the only guide we have in treatment, should not have such harsh boundaries, and should allow more movement between diagnoses. They should be guidelines (the code is more like guidelines than actual rules).

There should also simply be more cross-cultural research. Right now we have very Western-centric views of psychology as well as very white, male views of psychology (thanks Freud). We need to focus on evidence based treatments, and we also need to simply be willing to have MANY types of treatment available for people who are exhibiting different symptoms because of their demographic. We need to have psychologists who are social justice aware: personally I think that sociology, women’s studies, and race studies classes should be required of every psychology major. It is SO important to improve our mental healthcare system, and the first place we need to turn is how we determine who needs mental healthcare.

If we’re being honest? EVERYONE. Mental healthcare isn’t about turning people into the neurotypical. It is about improving functioning. Everyone could use a mental health checkup, just like they have a physical health checkup to make sure they’re functioning like they should and to catch any worries or glitches before they turn into something serious. We need a paradigm shift that no longer sees diagnoses as identifying problematic difference to seeing diagnoses as identifying problems with functioning that require help.

NOTE: they are trying to adjust some of these problems in the latest update of the DSM, the DSM-V which is coming out in May.