Awareness vs. Acceptance: We Do Need Both

It’s almost April, which means it’s almost Autism Awareness Month, which means it’s almost the time of year where Autism Speaks becomes even more insufferable and awful than they are the rest of the year and a lot of advocates try to combat the Speaks messaging with messaging of their own. I’m all for reminding people that Speaks is not the only or even one of the better autism organizations, and for giving people concrete facts about what Speaks has done to harm people with autism.

But one thing that has been grating on me is that I see the message “we need acceptance not awareness” all over the place during April. I get it. We do need acceptance. There are lots of organizations that use the guise of “awareness” to peddle really harmful BS.  Autistic people really do need the same respect, autonomy, and fulfillment as anyone else, and nothing else will improve their lives as quickly. These are great goals and I fully support them. But a lot of Autistics and their families say that people are already aware of autism, so we don’t need awareness anymore.

I strongly disagree.

Personally I’m a big fan of the word “and”. We need acceptance AND we need awareness.

When I came out to my parents as autistic, they almost laughed at me in disbelief because they had a very different picture in their mind of what autism was (think more Rain Man, less me), and were not aware of how it can present differently in women. I still hear stories of people getting misdiagnosed because their therapist didn’t think women could have autism.

When I talk to friends, they still use “autistic” to mean socially awkward or obsessive, but they have never heard of many of the other traits of autism, nor do they understand the whole “spectrum” concept.

When I explain that people on the spectrum can have sensory sensitivities, I often am met with confusion or surprise. I’m still seen as picky or high strung because I cannot eat certain foods without a gag reflex. People are confused when you call perfumes and scents an access issue.

Sure, people know that autism exists, and might have a vague understanding of what it is, but many, many people don’t understand how it actually affects people. I tend to run in circles that are pretty up on psychological information, and even my circles are full of people who require a lot of 101 explanations of how their behaviors can make my life hard or how to do basic accessibility or even what autism can look like.

Awareness is not simply awareness that autism exists: it’s awareness of what autism is and why autistics behave in the ways they do and what the current issues are in the autism community. Of course we can’t educate every person on every nuance of autism, but that doesn’t mean we can’t give most people a solid foundation of understanding that will help them be more accepting.

Because I have a secret about human behavior for you: people will not accept your behavior unless they understand it. Acceptance relies on awareness. People are way more likely to accept your differences if they have some understanding of why you do what you do and have at least some ability to predict your behavior (does this sound familiar autism community? Do we sometimes find it hard to accept things that we don’t understand or that are sprung on us without prep time? Can we start implementing universal access in our own lives by walking allistic people step by step through what to expect?)

Now sure, it would be way better if we could all just accept each other’s differences without question, but that’s not how humans work. Some people can make that happen with a lot of work (in DBT we call it the skill Radical Acceptance), but acceptance is much easier with an explanation. We don’t just need to be aware of the existence of autism, but of the reasons it might push someone to behave in what we view as incomprehensible ways. We need to make autism comprehensible to others.

So no, I’m not done educating or increasing awareness. I want people to be aware of sensory sensitivities and what it means to be nonverbal, I want people to be aware of meltdowns from the internal perspective, I want people to be aware of what a fidget is and why someone might use it, I want someone to be aware of how their language and communication style might be alienating someone. And THEN I want them to accept all these differences. But I don’t think we’re done with step one yet. So I will still advocate for increased awareness, because I have experienced the ignorance of many folks when it comes to autism.

As a final note, none of this means that we have to do awareness before we can do acceptance. I think we should be working on both all the time. I am all for criticizing awareness done poorly. If you’re spreading misinformation (Jenny McCarthy…Autism Speaks…looking at you), then I’d rather you shut your mouth than try to help. But criticizing the whole idea of awareness? That doesn’t make sense. I want people to understand my life. I am always for more education.

Asking for Accommodations Doesn’t Mean I’m Delicate

There’s this thing that I’ve noticed from people who are generally very nice and reasonable people when I tell them about the ways that my neurodivergent brain affects my life. I might say something simple like “I really can’t handle socializing for extended periods of time,” and ask for an accommodation.

Then comes the special tone of voice, one of mixed surprise and condescension. Especially when my accommodations are for something that seems small to me, like asking that people text instead of call, or when I say that I prefer to be in a small group to a large group, I often get the sense that people are astounded that I’m so broken.

Some people have even gone so far as to say things like “Well YOUR life sounds so much more stressful than mine. I can call people on the phone just fine.” There’s an assumption that because my brain prevents me from doing certain things, I live in some kind of hellscape or that I’m severely limited in what I’m capable of doing, sitting alone in my house wishing I could pick up the phone or go out and party.

It’s weird, because when I say things like “I have lots of anxiety about talking on the phone. I really hate it and would prefer not to do it,” I am not looking for sympathy, nor am I trying to tell people that I’m unhappy with my life. I’m not trying to make myself out to be fragile or delicate or in need of protection. I am asking for accommodations. I’m letting people know that I’d like to do things slightly differently from other people. Often I’ll include the full extent of why I’m asking for the accommodation because otherwise people think I’m being a diva or won’t respect my request.

There’s a really challenging kind of circle that you get stuck in when you’re disabled or mentally ill or asking for accommodations: explaining to people how hard things are means they start to discount your competence, but not explaining means that they will assume you don’t need the accommodations.

More often than not I’m likely to let people in on just how hard things can be because we need more honesty in that discussion, and because often people don’t really get what it means to be chronically mentally ill. But I’m getting incredibly sick of people thinking that this means I’m fragile, or acting as if they’re better than I am in some way because they can do “basic” tasks. Bully for you. Sometimes I can’t eat food without breaking down. But you know what I can do? I can write a mean blog post, take over a social media page without blinking, and alphabetize the shit out of anything. I can see patterns in things, I can make connections between things, and I can hold down some awesome conversations about everything from living forever to the intricacies of disability activism.

But you know what? Even if I COULDN’T do all those things, I still wouldn’t deserve your pity or your condescension. Because there’s nothing about talking on the phone or hanging out in crowded places that makes me less or more human. I am not a worse person because I am uncomfortable with times when I can’t quite catch the social cues for when to start and end sentences. My life isn’t WORSE because I can’t do or feel uncomfortable doing certain things. It is made worse by people who won’t accommodate my need to not do those things and by people who accommodate with a side helping of judgment, but there’s nothing about talking on the phone that would leave me fulfilled in a way that I’m not right now (in fact I maintain that my life is way better now than it was when I was trying to do a lot of things that set off my anxiety).

Asking for help doesn’t make me weak. It is not an invitation to comment on the value or fulfillment of my life. It isn’t something that puts you above me. In fact it’s probably a lot harder than most things most people do. It is self advocacy. But more than that, it isn’t an admission of limitations. When I say that I have trouble with something I’m not saying that I’m giving up on my life or giving up on interacting with people. I’m asking for help to find another way. It’s just like someone who can’t reach a shelf asking for a stool: it’s not a judgment about their abilities. It’s a recognition that they need to do it differently than someone taller.

I see too many people acting as if a statement like “I can’t talk on the phone without getting anxious” is the end of the conversation. It’s not. It’s the beginning. It’s the point at which you say “can I text you instead?” or I ask for another accommodation. It’s a statement of fact but not a recognition of failure. There are things in this world that I will never do. Run a marathon, quantum physics, and also feel comfortable in group settings. No one gets all uppity if I say I’m never going to understand the intricacies of the theory of relativity, so why do they make faces like they’re sucking lemons when I say I’m never going to feel comfortable in certain social situations? None of those things diminish my ability to live a good life that I enjoy and that contributes something to the world around me.

And I suppose that’s the point isn’t it? When I say there are certain things I can’t do, some people think that those things are a prerequisite for being a functional, happy human. They think that I’m diminishing myself by recognizing there are some things I can’t do. They seem to think that I’m fragile, or I need protection, or I can’t be independent because I can’t or won’t do certain tasks that they see as basic or necessary.

There are certain activities that enough people do that they have become synonymous with “human.” Of course these standards of “basic human tasks” have changed greatly over time and in different places, so no, there’s nothing inherently human about eating three meals a day, or being able to strike up a conversation at a coffee shop, or making small talk. When people hear that I can’t do some things they take for granted, they don’t understand that there’s nothing all that great about the things they take for granted.

The more I can question the idea that I need to do certain things in a certain way in order to be ok, the better I feel. I can’t do some things. So what I need from the people around me is just a little bit of adjustment. There are some things all of you can’t do that I can do. It doesn’t make you less than me. I make adjustments for people around me all the time without giving them any side eye. Can we make it mutual?

Thinking About Marriage as an Ashamed Monogamist

I’ve been thinking a lot about marriage lately. I’m hitting the age where my friends are in many cases starting to get hitched and The Boy and I have discussed marriage. I’ve come to the realization that despite some childhood antagonism towards marriage, I do want to get married. But that doesn’t mean I whole-heartedly support the idea of marriage itself.

Marriage as an institution is sexist, heteronormative, anti-polyamory, and pretty much stuck in another century in nearly every way. Many of the traditions are rooted in a time when women were property and marriage was an economic transaction. It is still part of a system that prioritizes romantic relationships over all others and that forcefully pushes the nuclear family model on everyone, regardless of their preferences and needs. It ignores the existence of polyamory, and has only barely started to tiptoe out of its oppressively heteronormative roots. It also is a hugely capitalistic endeavor, with people spending obscene amounts of money often because they have been told that weddings need to have certain elements. Often that money gets spent on things like diamonds, that come from exploitative industries.

Marriage is also a celebration of many things that are hugely important to human life and will probably never stop being so: love, family, connection, and community.

I like rituals. I have always liked feeling as if there is a clear next step in my life, and a set of rules and circumstances to fit who I am and what I need. I like ceremony and hooplah and being the center of attention. I like big parties and pretty dresses. I like talking about how much I love my partner. And while I understand that marriage is a completely arbitrary set of rules and rituals that only have as much meaning as we give them, I love metaphors and symbols and really like to create special meanings in my relationship.

I am also monogamous, heterosexual, cis, and in many ways built so that marriage as it stands today will fit me. I know that part of the reason I can set aside my qualms with marriage and “make it fit me” is because it was designed to fit me. So how does a girl embrace something that seems like it will improve her life while recognizing and trying to make space for the ways that thing upholds oppression? Of course I’m really not sure, but here are some of the things that I’m thinking about.

The biggest hangup I have about marriage is that I am monogamous.When I’m in a relationship I stop feeling much by way of attraction towards anyone else. I’m socially anxious and on the asexual end of the spectrum. one relationship is about all I can and want to handle. Why would that make marriage hard for me? Marriage is made for monogamous people! It’s whole point is to be monogamous. That is of course the problem in my mind. I don’t think there’s anything better about monogamy than other relationship styles. It’s just what works for me. All of that would be fine if it weren’t for the fact that by participating in marriage I am on some level telling my poly friends that I’m ok with an institution that forces them to choose a relationship pattern that doesn’t necessarily work for them. I’m getting legal and financial benefits that they won’t. This is where the rubber hits the road for me in criticisms of choice feminism. Marriage and monogamy might work for me and that’s great, but my choices affect other people.

Even for other monogamous people, marriage isn’t always the best choice. It doesn’t allow for extended families very well (at least as we conceive of it today, it pushes two spouses to live with their kids and no one else), and it collapses the distinctions between sex and romance. It implies that romantic and sexual partnership is the goal of everyone’s life. It doesn’t do great things for aromantic and asexual people. It’s really just leaving a lot of people out in the cold without a nice, clear way to legally recognize their families.

I don’t know that there are any clear paths forward. I don’t ever think that the answer to one group’s oppression is to tell everyone to stop doing what works for them. I think the answer is more often to make things more available to more people instead of taking them away until they’re fair. Marriage is also pretty personal: it has to do with how you create your family and life, and those are really important decisions that are different for everyone. So the ideas that I’m throwing out here are what I think will work for me. I’d love to hear how others grapple with responsibly approaching marriage as a social justice minded person.

The most important thing in my mind is continuing to speak out about the ways that marriage prioritizes certain people over others, and to support and listen to people who say it doesn’t work for them. Additionally, I also want to de emphasize the importance of marriage in my life. Because marriage as an institution says that the best and most important relationship in your life is a primary, monogamous romantic partner, I want to put less of an emphasis on marriage in my life. Sure it’s something that I want, but I also want to make a concerted effort to continue to foster my other relationships, to focus on other parts of my life, to recognize that “getting a man” isn’t the most important thing in my life. I want to throw myself just as big of a party if I get a Master’s degree or if I get a book published. I want to help try to take the mystique away from marriage by making it another celebration of another milestone that someone might find important.

I also want to remind myself and others that I can express my love in ways that don’t involve spending thousands of dollars. I can create smaller ceremonies that aren’t bound to be legally recognized in specific ways. I can throw Galentine’s day parties or write my honey love letters at random points in time. All of these do a little bit to erode the ways that we see marriage as necessary, immutable, and more important than anything else.

Of course none of this will fix the way marriage exists in our society now. I also intend to vote for any legislation that widens the scope of marriage, talk loudly and vocally to anyone who will listen about the fact that I wish there were a way to legally recognize a non-romantic individual as part of your family, and criticize all the ways that our conceptions of gender, sex, and family are fucked up. I will continue to educate others about the existence and healthiness of a wide variety of styles of sexuality and relationships. And I will advocate for their legal recognition and protection.

Because as much as I want to get married, I want everyone else to feel just as comfortable, supported, and safe in their life choices as I do.

Chronic, Acute, and Situational Mental Illnesses: Hierarchy and Oppression

Despite the fact that I spend a lot of my life trying to improve awareness and acceptance for people with mental illness, I know that I still screw up. I know that I carry around internalized ableism, and that I make mistakes in how I view myself and the mental illnesses I live with. One of these has been swirling around in my head as I try to make sense of it and challenge it for quite some time now, and I think it’s time to start talking about a form of ableism that is most common in communities of people with mental illness.

It’s not unknown that we treat different kinds of mental illness as more or less important. Depression and anxiety are often considered “not really sick” whereas schizophrenia or personality disorders get lumped into “super crazy*, bad people”. But one of the ways that we distinguish different kinds of mental illness is something that I haven’t heard people talk about much. That’s the difference between acute, chronic, clinical, and situational mental illnesses. One of the times that I have heard this expressed is in the debates over deleting the grief exception for a depression diagnosis. Many people said that this was “medicalizing sadness” or making the normal into illness. The idea behind that is that if your emotions are in response to something, aren’t chronic, or are “normal” (emotions that make sense for the situation, even if they are extreme or debilitating), then you can’t be mentally ill.

There’s a lot to unpack in those distinctions. I think in many ways words like acute, chronic, and situational function in much the same way as functioning labels: they are used to dismiss the opinions and abilities of those who are really struggling and to withhold treatment from those who can appear “normal.”

Similarly, I see hierarchies existing within mental illness communities about what constitutes actual sickness, what is serious illness, and who deserves attention. Some people use those same words to demean others as crazy or out of touch with reality, or to focus on visible elements of mental illness over chronic ones.

Chronic mental illness is just what it sounds like: ongoing mental illness. It can stick around for years. Often people will use it to mean lower intensity, but it doesn’t have to be. Situational mental illnesses are those that arise in response to something. You might become depressed when you’re working a really awful job or after a nasty breakup, or anxious after living with an abusive partner.

Clinical or acute mental illness is typically what we call mental illness that has a large impact on an individual’s life. It’s mental illness that seriously impairs someone’s ability to go through their daily life. Sometimes it’s seen as synonymous with “serious”.

Sometimes we use it to refer to specific incidents that are more extreme. In this case, I’m going to use acute to refer to discrete incidents that are extreme, visible, and intense. This could include things like a PTSD flashback, self-harm, hallucination, or being triggered. This parallels the way that acute and chronic are used to refer to pain.

Unsurprisingly, these incidents tend to get the most attention of all mental illnesses, whether that attention is positive or negative. These are the types of incidents that are used to either prove how “crazy” and “other” mentally ill people are, or as evidence that the lives of mentally ill people are actually really, much more difficult than you think. these are the incidents that scare the pants off of family and friends and typically get some kind of immediate response. I personally have experienced these types of symptoms being prioritized over my chronic emotional problems that were leading to these symptoms. If I self harm, people view it as something that needs to be solved immediately. If I continue to feel all of the awful feelings that led me to self harm, other people don’t seem overly concerned. In my mind, that’s backwards since it’s treating the symptom instead of the problem.

Another example of this prioritization comes in discussions of trigger warnings and ways to help protect people who are susceptible to mental illness. We focus on trigger warnings or content notices because being triggered is immediate, visible, intense. Things like racism, or negative self-talk may not trigger an immediate reaction, but over time can build up into just as serious chronic conditions. For some reason we often ignore those. I have even noticed in myself that I tend to use “content notice” instead of trigger warning when I’m talking about racism or sexism, because in my mind they do not link immediately to a “triggered” reaction (questions of the utility and place of trigger warnings are not relevant here). But racism, sexism, transphobia, and other oppressions can lead to long term, chronic mental illnesses that are just as debilitating and often deadly.

It’s important to recognize that even low level, chronic conditions deserve compassion and treatment, not just the big, acute incidents that are scary and in your face. Interestingly, I’ve also seen chronic, acute, or clinical labels used to discount the competency of the people who get them. So while those people’s problems are taken seriously and considered important or deserving of treatment, they as people are often dismissed or discounted because they are “too sick” or “not thinking clearly” or just different.

People have actually said to my face that my brain is scarier or harder than theirs because they have only experienced situational depression, not clinical depression. Some people who have difficulties accepting mental illness will use the phrase “situational” to imply that they aren’t really mentally ill. It’s a way to acknowledge that you struggle without accepting the full label. To me, that belies internalized ableism. There is nothing wrong with being mentally ill. Why would you need to specify or qualify your depression or mental illness unless you felt uncomfortable accepting it? It’s easier to maintain that your opinions and experiences are normal or valid when you have a label that says you only get really down when it makes sense, when you’re reacting to life, when it’s situational. The problem is that when you say that you imply that people with clinical depression aren’t normal or valid. You’re implying that if an emotion is irrational, then there’s something wrong with it or the person who’s having it. Amazingly, I believe that even when I have irrational feelings I’m still capable of behaving with empathy and kindness, and that I am still a decent person.

While these labels are helpful in many ways when they’re used as simple descriptors, it’s easy to use them to imply that some types of mental illness are more important than others or that some people are more or less mentally ill than other people. Those kinds of divides are generally quite unhelpful. Comparing suffering generally does very little to help anyone and does a lot to invalidate people’s experiences. I worry that within mental illness communities we are dismissing people if they can’t prove their mental illness credentials, and that in the vast world where stigma still reigns, labels are used to keep mentally ill people othered.

I think it makes the most sense to think of mental health as a spectrum, from people who are really struggling to those who are living a life that they find satisfying. We can all move up and down the spectrum at different times and in different situations, and everyone deserves help and support to reach a life that feels good to them. Sometimes people have emotions that are overwhelming and debilitating to them in situations where those emotions make sense. They still deserve help. Sometimes people have emotions that don’t make sense. They still deserve respect. I think it’s important to recognize that even among people who have mental illnesses or are working hard to eradicate ableism, there are sneaky ways it can enter into our thinking. I for one am going to make an effort to validate and support everyone, even when it’s easy to assume that my mental illness is more important. I see no benefit in creating an hierarchy in my activism.

 

 

*I don’t much like calling people crazy, but these are the folks that commonly get called crazy as a way of othering. I use it here to illustrate the ways people talk about about mental illness.

Note: My friend Will over at Skepchick was the first person who pointed this out to me, so huge thanks to him for getting this started.

Image from Antidepressant Skills Workbook.

How the Push for More Inclusive Organizations Forces People to Out Themselves

Disability advocacy is one of the places where I often feel real torn. The place where I see this most is in the push for organizations that represent disabled people to employ disabled people. “Nothing about us without us,” is the battle cry. I would like to yell along. I would like to make that push along with people.

But as I’m realizing from my personal experience, it’s far more complicated than just hiring more disabled people. It’s about marketing and it’s about disclosure. Here’s a question for you: do you know how many people with disabilities work at your place of employment? Are those numbers available to anyone? The answer is most likely no, because of the nature of disability. It’s often invisible, it’s often stigmatized, and it’s often personal. So many if not most people do not disclose, especially if they have an invisible illness. Sure, there are some disabilities that are pretty obvious, like if someone is visually impaired or mobility impaired, but even then, they are under no obligation to disclose exactly what their disability is.

Let’s use my life as an example. I work at an autism organization. I have not disclosed my autism diagnosis to my coworkers, because there’s really no particular reason for me to do so. I don’t need accommodations at this job that I can’t create for myself with relative ease. I know of at least one other person in our organization who is on the spectrum but does not discuss their diagnosis or personal life publicly. We do not highlight either of us in our marketing because it would be wholly inappropriate for us to blast the personal lives of our employees. Neither of us is comfortable being out and talking about our experiences with our coworkers. For reference, we are an organization of less than 20 individuals.

My workplace has been criticized for not hiring autistic people. An organization that is over 10% autistics is criticized for not having enough autistic voices. Don’t give me BS about only autistics working at autistic organizations, that isn’t feasible or practical, and 10% is much higher than the proportion of autistics in the general population.

This means that those of us who are on the spectrum have a choice: disclose or have our voices and contributions erased.

Suddenly we are required to disclose our disability or be criticized for speaking over the voices of other disabled people. That’s a really shitty position to put someone in. Now look, I understand. If people aren’t open about their identities it’s really hard to advocate for their rights. Coming out is incredibly important for many movements for lots of reasons. But we can’t punish the people who are afraid to come out. This is why I have an issue with saying that only disabled people can speak about disability: you don’t know who is or isn’t disabled and no one is under any obligation to disclose to you. You cannot be the police of who gets to speak about disability because then you are the police of who has disabilities. That is not something that I am willing to accept.

With all of that said, it is important to continue to push for organizations that focus on disabilities to include people with those disabilities, and most especially to hire people with disabilities. Yes, this does put us in a bit of a bind: how can we hold people accountable if we have no way to get accurate numbers? How can you make improvements if you can’t really accurately identify who has a problem?

Ha, you thought I had good answers. I don’t. Unfortunately one of the most integral parts of improving life for people with disabilities is decreasing stigma, so that coming out isn’t as fraught or scary of a process. And part of that process is having visible, out members of society doing the things we consider normal. Welcome to the Catch 22 of activism.

So I suppose if there’s one thing I want from this post it’s for people to be aware that criticizing organizations for not including individuals with disabilities is not always as perfect of a solution as it might seem. You might be telling someone with a disability that they don’t count or that they have to prove their disability in some fashion. You may still choose to make the criticism, but please do not erase those who aren’t out. Note that there may be people with undisclosed disabilities, and be open to hearing that there is someone on the spectrum or with a disability that you didn’t know about.

The hardest thing to recognize is that there are virtually no actions that don’t harm anyone. So when we are engaging in activism, we need to be aware and self critical.

Featured image by Caitlin Tobias.