Is It Ableism? Part 12: It's Complicated

Links to previous installments in this series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

Part 4: Internalized Ableism

Part 5: Is "Overcoming" Worth It?

Part 6: Accommodation 

Part 7: Infantilization

Part 8: Immaturity or "The Blog Post Where I Have a Meltdown"

Part 9: Unintentional Gaslighting

Part 10: Challenging Comfort Zones

Part 11: Advocating for Your Needs

We have unpacked a lot about ableism in this series, and it's only natural that it took a large number of posts to do so. It is a very broad topic with a lot that deserves examination. There is much more I wish I could have covered: For example, what's the difference between a variation in brain function and a disability in brain function? Is it all a matter of opinion? Should it even be defined? And are there limits to accommodation, let alone "reasonable" accommodation? These are endless conversations, and maybe I will tackle them sometime. However, I hope that I managed to elucidate a number of other issues that I feel are overlooked when discussing ableism. I also hope that I have raised your consciousness in the kinds of things that could be classified as ableist. However, it is here that I would like to urge you to be cautious when labeling attitudes or actions of people as ableist-- let alone people themselves as ableist.

Ableism is a complicated, nuanced issue, whether it's about how it relates to autistic people or people with other disabilities. As I've alluded to in this series-- and in a recent post, "Can We Stop Alienating Each Other?"-- I feel that "ableist" and "ableism" are words that, while they have their place, are unfortunately overused to the point where they feel more like a thought-terminating cliché than a complex concept worth examining. I see this a lot in autism groups on Facebook and in social justice circles in general. What has become apparent lately is that there seems to be a kind of orthodoxy in these groups. That is, there has to be a universally-agreed-upon definition of what constitutes ableism that cannot be questioned unless that person wants to be stamped with a scarlet letter of sorts.

I see accusations of ableism hurled around when, God forbid, someone in an autism group says that they prefer the word "Asperger's" instead of autism to describe themselves. One reason this upsets so many people is that "Asperger's" is a word used to describe someone on the autism spectrum who is considered "high functioning." People who object to the use of "Asperger's" often tell the person that they feel superior to "lower-functioning" autistic people, whom they want to distance themselves from. They accuse the person of ableism, internalized ableism, and all-around bigotry. Whether or not there is any truth to this is a discussion worth having, but it's not going to work unless the discussion will be civil.

Right now I can hear objections to my comments about "civil discussion" in the form of accusations of ableism: What about people who have been traumatized when they were classified as "low functioning" and therefore "hopeless"? One or more of those people might have PTSD and cannot help but have an angry response. How dare I demand a particular ability that they might not have? 

Again, a discussion worth having... and it's important to note that not everybody has experienced that kind of trauma or, if they have, they might not have PTSD from it. People who can handle the discussion should have it, but the people who can't might do well to turn off notifications for the thread. Is that an ableist statement? 

What about the common accusations of internalized ableism?

Is it internalized ableism for me to be glad I've never had sensory issues and to wish I didn't have prosopagnosia? Is it internalized ableism for me to say I'm glad I don't need to use a wheelchair? What about someone who needs a wheelchair and wishes they didn't? Years ago, my mom, a retired teacher, told me a story about how one of her students, a wheelchair user, wrote about how he often had dreams about being able to run down a football field. He was always devastated when he woke up from these dreams, as he didn't know what it was like to be able to run, or even walk. Is he guilty of internalized ableism? I think not. But if you think so, then probably every one of us-- including people with disabilities--  is guilty of internalized ableism on some level. And at that point, the term ceases to have meaning. In any case, in none of these situations am I-- or my mom's former student-- making declarations of inferiority to people without these disabilities. We just prefer we didn't have them.

I have even heard stories about people who have confessed to being worried that some activity they do will lead to an accident that will make them need a wheelchair. Then they feel guilty because they think it's a form of internalized ableism. I'm sorry, but that's absolutely ridiculous. It's nice to be able to walk. What's ableism is looking down on people who can't!

What if the late astrophysicist Stephen Hawking (who likely wished he hadn't become paralyzed and had to use a wheelchair, but that's a different point than the one I'm about to make), had gotten into an accident that affected his cognitive function? Let's say his nonverbal IQ score, which was apparently an unbelievable 160, dropped to 102. IQ isn't everything, but 102 is not enough to handle something as intellectually demanding as astrophysics. When I was a kid, my nonverbal IQ score was actually measured at 102 (I have nonverbal learning disability, like many of us on the spectrum). And guess what? I wouldn't blame Hawking for being devastated if this happened to him, and I wouldn't consider it ableism, internalized or otherwise. Because you know what? It sucks to be able to lose the ability to do something, especially if that ability was important to you.

There are some truths that we can't pretend don't exist. Like it or not, every interaction that we have with one another assumes some level of ability. By writing this blog post, I am assuming that you can see and that you can read. Or, at least I'm assuming that if you can't do one or both that someone-- or something, like the voice function on your device-- is reading it to you. I'm also assuming that you know how to turn on your device. I also assume that your reading comprehension is within typical or near-typical limits. Otherwise, you might not be able to understand the blog post. Is it ableist for me to make these assumptions?

Maybe in the Facebook groups where people shout "ableism!" like it's going out of style, they're also assuming that everybody in the group can read. How do they know there isn't someone in the group who can't read for some reason and is just there because they like looking at the color scheme in the group, and just being there makes them feel like they belong? Nobody knows for certain that this isn't happening.

We may be wrong sometimes when we make assumptions about other people's abilities, and that's okay as long as we are open to learning. For instance, someone might have a knee-jerk reaction when witnessing a ten-year-old having a meltdown in the store because his parents won't buy him the toy he wanted. She might assume that the kid is spoiled and has parents who normally cater to his every whim. She might turn to her friend, an adult on the autism spectrum, and say, "That kid is throwing a tantrum! He wasn't brought up right!" The friend might say, "That's possible-- or it could be that he's autistic. Maybe he's having a meltdown because he's been overly invested in this toy for months, and he's devastated now that he is learning that he can't get it. If you think this is hard for you to witness, think how hard it is for him to experience it." If she is open to what her friend tells her and is willing to learn from her insight, then that's a good thing!

What about ableist language? I've heard arguments that saying, "This movie is stupid," is ableist because of the word "stupid." I don't think so, because, as I stated in Part 8, this is a word that is used to describe actions or attitudes when a person with average or above average intelligence was doing them clearly knew better-- or, in the case of a movie, the word just means it was badly written. It's not a medical term, and most people understand that it's lousy to use it to describe someone with an intellectual disability. "Retarded," however, is a different matter, because it has been a medical term in living memory. 

There is no limit to what we could consider ableist. Maybe it's ableist to not drink during pregnancy because the alcohol could cause the baby to have an intellectual disability. Hell, by extension it means that the mother is ableist for valuing intelligence and wanting her child to not struggle in school. You see how ridiculous this sounds? 

And one more thing that I want to point out is that none of us have 20/20 foresight. There are many things that parents, teachers, camp counselors, and peers said to me in the '90s that would be considered ableist with a 21st-century awareness and understanding of autism and other conditions. As I've said, I believe that the appropriate application of the label of "ableism" is contingent upon the person knowing that a disability is present, and therefore I have to let some of these people off the hook. We as a society are learning more, and this is a sign of progress. There is no doubt in my mind that we are-- hell, I am-- saying things today that will be considered ableist in twenty years in light of a disability that hasn't been identified yet.

I am open to having my mind changed on this post-- hell, on all of the posts in this series. I might look back at this series in a month, a year, a decade and realize that there are holes in my arguments and that maybe there would be a better word than "ableism" to describe the overarching theme of this series. And just like with the book that I talked about in Part 4, I might end up cringing at some of what I have written. 

People evolve and their perceptions evolve, and we have to let them. 

Is It Ableism? Part 4: Internalized Ableism

If you've just joined me, don't forget the read the first three posts in my Is It Ableism? series:

Part 1: Revisiting the Dark Ages

Part 2: Obvious Definitions of Ableism

Part 3: Defining Disability

In Part 3 of my Is It Ableism? series, I ended by saying I wouldn't want to be "cured" of autism because it makes me who I am. Prosopagnosia is a different story; it isn't something that I feel makes me who I am, but just something that gets in the way. I also said that I could imagine people accusing me of internalized ableism for making this statement. Again, we need to make sure we have a discussion about this issue rather than being so quick to jump to conclusions. 

So what is internalized ableism? Let's ask Wikipedia. Internalized ableism is a form of internalized oppression, which occurs when "one group perceives an inequality of value relative to another group, and desires to be like the more highly-valued group." Obviously, this can occur at the individual level too. I reject the idea that my desire to not have prosopagnosia is a form of internalized ableism. Even though people generally are understanding when I tell them it will take me a while to learn their faces, I would prefer that this wasn't the case, that it didn't take so much effort. But that doesn't mean I think that people without prosopagnosia are "better" than me. If I did, then, yes, that would be a form of internalized ableism. That doesn't mean I haven't suffered from internalized ableism in other circumstances. In fact, I think I have, in the form of a book I wrote several years ago.

In the summer of 2010, I began writing a book for parents of kids with Asperger's Syndrome*. I began seeking an agent for the book in 2013, but it fell to the wayside as I had just been fired from a job in Maine, where I moved to after leaving Brooklyn. I had to move back in with my parents in Pennsylvania, continuing the never-ending saga of trying to find and keep a job. When I finally got on my feet again in Boston, I decided not to pursue publication: Many of the ideas that I expressed in the book, such as that we need to stop trying to "fix" kids with Asperger's Syndrome, were novel at the time that I wrote the book but are now at long last a growing part of mainstream discourse. Much of what I said has been expressed by lots of autistic people in books, blogs, and on YouTube. My book is outdated, and I am now prioritizing writing fiction. Any of my personal thoughts about autism go into this blog, of course, and possibly in some "officially" published articles in the future.

I still stand by most of what I expressed in my book, but there are other things I now realize are cringeworthy. In the opening chapter, I proudly declared that I probably would not meet the diagnostic criteria for autism if I were tested as an adult. This statement was shortsighted, ignorant, and, yes, arguably reflective of internalized ableism. I made this statement based on something that I once read about how some autistic people, upon reaching adulthood, present in ways that are subclinical. 

I realize now that part of the reason that some people don't seem to meet the diagnostic criteria in adulthood is because there are still many psychologists who have a narrow-minded view of what autism looks like, especially in women. I've heard too many women complain that they were not diagnosed because they fail to meet certain stereotypes. They are told things like, "You're too creative to be autistic" or "You're too outgoing to be autistic." In my mind, that would be just as ignorant as telling someone, "You can't have Tourette Syndrome because you never swear**."

Another reason is that lots of autistic people-- again, mostly women-- have learned to "mask"-- suppress their natural autistic tendencies in the name of being accepted and, more importantly, to avoid interpersonal trauma. But guess what? Many of these people suffer trauma anyway, often in the form of PTSD as a result of decades of exhaustive masking. 

Maybe my autism is less obvious now than it was twenty-ish years ago, but that isn't something I should boast about. I realize that part of it has to do with what autistic people stereotypically look like and another part has to do with the fact that I had to work hard to get to where I am now in terms of social skills. I don't know how much of this has to do with masking-- which I was never good at anyway-- and how much of it has to do with natural neurobiological changes. The latter I deserve no credit for because people are made the way they are made. I had a hard time making eye contact with unfamiliar adults when I was a kid, but that changed around adolescence. For me, it was a stage that I simply outgrew***. My guess was that there was simply a natural, neurobiological change that occurred. 

On the other hand, there are other things that I had to work rigorously to curb, such as my tendency to to make inappropriate jokes. I still make them, but these days I am better at choosing my audience for them. I was one of those autistic kids who had no "filter", and I had to work hard to "install" it. Same with my tendency for meltdowns. The meltdowns are largely under control due to the intervention of SSRIs and rigorous self-training; when they do happen, it's generally only when I'm alone or around my family, where I am more likely let my guard down (that, and the fact that since they've known me for so long they often accidentally reopen old wounds, as illustrated in the first post in the series). 

So what does this have to do with internalized ableism? It has everything to do with it! Over the years-- and even still today-- if I occasionally don't rein myself in with a joke or a meltdown, I get unbelievably angry at myself, holding myself to neurotypical standards. I feel not that I made a mistake, but that I have done something horrible, that I have failed in some egregious, unforgivable way, and that any harsh backlash I get from other people for it is well-deserved rather than the result of lack of understanding on their part. Just to illustrate how ludicrous this is, let me give you an analogy with a physical disability: A wheelchair user tries to walk up the stairs into a building but keeps falling down. Instead of accepting that she needs a wheelchair, she tells herself, "What's wrong with you? Everyone else can get into the building, so why can't you?" Perhaps she has said this to herself after decades of hearing things like, "You need to learn to walk," "Do you see other people your age stumbling on the stairs?", "You're not trying", and "You refuse to learn to walk!"

As my therapist has repeatedly told me, I have been well-trained. Growing up and well into my twenties, my well-meaning but ignorant (again, in the "I don't understand astrophysics" way, not the Donald Trump way) parents repeatedly said similar things as in my wheelchair user example, such as, "You're not trying," "You need to learn to...", "You refuse to learn...", "You need to change," and so forth. After learning about the autism spectrum in 2002 and finally having a logical explanation for, well, everything in my life, I still managed to internalize the feedback and input and got from my parents and others. For many years I saw my autism as something to overcome rather than something to accept and expect understanding and accommodation for. As illustrated in the first blog post, my dad still has the mentality that autism is something to "overcome."

But even with "overcoming" vs. "acceptance", there is a lot of gray area, just like everything else I've written about so far in this series. Stay tuned.

*This was the term I used for myself back then. These days I waffle between "Asperger's Syndrome" and autism and feel ambivalent towards both terms. But that's another contentious discussion for another day.

**This particular manifestation is called coprolalia, and it occurs only in a small minority of people with Tourette Syndrome. Unfortunately, it is the most prevailing stereotype that people associate with the condition.

***To be clear, I use the term "outgrew" because my transition into making eye contact happened naturally, not because other people forced me to or because I forced myself to. I realize that for many people eye contact will be difficult or impossible for them for their entire lives, and nobody should force them to do it.

Is It Ableism? Part 3: Defining Disability

If you've missed the previous installments of this series, check out Part 1, in which I introduce the concept of ableism; and Part 2, in which I attempt to define ableism. In the latter, I discussed examples of ableism in my own life while admitting that part of labeling someone's behavior ableist is contingent upon that person knowing about the disability in question. Ableism isn't always easy to define, and defining disability is also complicated.

According to our good friend Wikipedia, a disability is "any condition that makes it more difficult for a person to do certain activities or effectively interact with the world around them (socially or materially)." Historically, society has taken for granted what is now called the medical model of disability: the person has a problem that needs to be fixed. For example, with a person who cannot use stairs, the goal is to "fix" that person to make them physically able to use stairs. If such interventions don't work, then that person is seen as the problem, rather than unaccommodating social systems and structures. 

On the other hand, there is the social model of disability, in which the person is disabled just by virtue of the fact that society does not accommodate them. The conditions that the person has are instead referred to as "impairments" (which I think is strange because it sounds judgmental, which seems to contradict what the social model is trying to prove), and "disability" is what happens when society refuses to accommodate said person.

So which definition of disability is better?

Unfortunately, the Internet is where nuance goes to die, and unless I immediately embrace only the social model of disability, I anticipate a huge backlash with accusations of ableism. Well, lay it on me. Like it or not, this is a nuanced issue and I'm not going to pretend it isn't. Both the medical and social models of disability have their merits and limitations. But what this comes back to for me is how difficult it is to define disability. So let's use an example that will elucidate the complexity of the issue:

Vision impairment. Nearly everybody needs glasses eventually. Some people need them full time from early childhood and others, like me, don't need their first pair until their 40s or later and even then only wear them part-time. If we lived in a world in which visual impairment wasn't so pervasive and inevitable, I think it would likely be seen as a disability. However, because it is pervasive and inevitable, accommodations-- known as glasses-- are readily available. It probably doesn't hurt that said accommodation easily fits into one's handbag or backpack. Vision impairment is only regarded as a disability when it is so severe that glasses don't readily help the person see clearly, the most extreme case being when the person is blind.

Well then, is blindness a disability by the medical definition or the social definition? I really don't know. Thankfully, there are more resources to aid blind people in navigating the world-- such as the availability of reading material in Braille or on audio, service dogs, and transportation services. It probably isn't enough, but if there were perfect accommodations available for blind people, would they suddenly no longer be disabled? I think we are burying our heads in the sand if we pretend that this is only a societal issue. Even without the dangers of modern society-- such as cars while crossing the streets-- a blind person is at a disadvantage in ways that are beyond the systemic. A blind person living in a traditional tribal society where predators that feed on humans run rampant, for example, might not survive long. 

However, I want to make it clear that even if we embrace the medical definition of disability on any level, that doesn't mean society should see a disabled person as "lesser" or "broken", and we shouldn't impose a cure on them for their condition, if one ever develops. It is tempting to think that a person with a disability might want to be cured, but in the 21st century it is ignorant to make this assumption. Years ago, I spoke to a person online who was completely blind, and I asked him if he ever wished he was able to see. He said he didn't, and if there was a cure he wouldn't take it. Being blind is what is normal to him because it is his world, his reality, and what he has always known. 

As for autism, how do we define it in terms of the medical definition vs. the social definition of "disability"? I really don't know. Looking back at my childhood, I would have been far less "disabled" if I had been met with more understanding and acceptance. Then again, I am what is often labeled as a "high-functioning" autistic, so maybe it is easier for me to make this statement. But that brings rise to another contentious issue-- functioning labels-- which many of us in the community see as problematic. I have mixed feelings on the issue. While I don't think functioning labels are irrelevant, they are not easy to define. Non-verbal autistic people are generally seen as "low-functioning" because they're unable to speak, but many of these people are also intelligent, as one might see when giving these people a computer to help them communicate. Intelligence is automatically seen as a "high-functioning" trait. Functioning labels, overall, are another complex issue and beyond the scope of this series of blog posts. Maybe I'll come back to it eventually.

I will say this though-- I do have several neurodevelopmental disabilities: I am autistic, I have non-verbal learning disability, auditory processing disorder, and prosopagnosia (and let's be real, NVLD, APD, and prosopagnosia have been strongly linked to autism). Would I want to be "cured" of autism? I don't think so. It comes with assets and limitations, but overall it makes me who I am. My propensity to hyperfocus can be equally a blessing or a curse, depending on what I'm hyperfocusing on. Getting hyperfocused on a project I'm working on? That's a good thing! It makes me productive! But what about the obsessive crushes (which are common among autistic people) I've experienced in the past? Well, when another person is on the receiving end of such an intense focus, no good can come of it. But aside from that, my ability to hyperfocus-- and be alone for copious amounts of time, for that matter-- are good things.

But what about my other developmental disabilities? If there were a cure for prosopagnosia, for example, I would take it in a heartbeat. There is nothing fun about prosopagnosia. While I don't think it makes me "less than", and while people are very understanding when I warn them I'll end up asking their names dozens of times before recognizing them on site, it's just a pain in the ass. I don't like having it. It's not something intrinsically tied in to my identity, and it just gets in the way. Just for saying that, I'm sure I'm going to (unfairly, I think) get a lot of accusations of internalized ableism. And just what is that? Well, stay tuned for next week's installment.