Invisible Disabilities
When I went to church last Sunday, my Sunday school class suddenly grew from its summer attendance of three people to its school-year total of… well, a lot, but more than fifty-two.
I know there were more than fifty-two because, in an effort to integrate the crop of new freshmen just moved in to attend a nearby Christian university, the organizers handed out cards from a deck of playing cards, one to a person, and asked us all to find and get to know the people who had the same numbers as ourselves. (I am almost certain they found this in a book with a title like 101 Icebreakers for Any Occasion.) Of course, by the time I had figured all this out, all the playing cards had been given to people already, and there were more people than playing cards. People without cards were told to go and find anyone else who also didn’t have a card.
Okay, so review this with me: They just told me to make my way through a room where everyone’s talking, attempt to find people without playing cards, and, if I miraculously found them, somehow understand their introductions in the middle of the auditory confusion. It’s no wonder I ended up standing there, looking befuddled, until things quieted down and the class started. In the end, I never did find that elusive group of cardless people.
I mention this partly because I wasn’t the only disabled person in the classroom; there was at least one other, a law student who is blind and apparently had no trouble finding her group. Whoever gave her a card sensibly told her what number was on it.
Of course, the Sunday school leaders couldn’t have known I would’ve been better off if pointed in the direction of the group I was supposed to be finding. I didn’t know that I’d need it, and they didn’t know that I was confused. That’s the thing, though: They didn’t know, because my disability isn’t obvious, and even when people know I’m autistic, they don’t automatically connect it to auditory processing. But this is an example of an incident that illustrates an interesting thing: Whether or not they know you’re disabled changes the way people perceive you; and it changes the way they treat you.
Invisible Disability
So what’s an invisible disability? Well, remember first of all that a disability is a gap between your skills/abilities and the skills/abilities expected of the average person in your society. Simple, yes? Okay.
“Invisible” means that, when the average member of your society looks at you, you don’t fit his stereotype of “disabled”-that is, you’re disabled, but you’re not perceived as disabled. For many people, “disabled” conjures up images of physical disability of the sort which involves visible signs, especially wheelchairs, crutches, or white canes. The disabilities they seem to find easiest to understand are the ones that are most prevalent in the media, and thus the ones they’re most exposed to.
There’s a spectrum of visibility too, of course. Some disabilities are more obvious than others. While there aren’t any easily recognizable autistic facial features, some autistic people are obviously autistic, even to a non-professional, after thirty seconds of observation. Others are obviously odd or disabled after a similar length of time, though they don’t seem specifically autistic. And some don’t trip people’s “disability” stereotypes at all, and are thus assumed to be non-disabled until proven otherwise. (In case anyone is wondering, I tend toward the “invisible at first, but eventually obvious” type. I can “pass” as neurotypical for short periods, but it takes quite a lot of effort.)
Autism is often an invisible disability. Examples of other invisible disabilities include learning disabilities, chronic pain or illness, ADHD, most mental illnesses, deafness and blindness that don’t come with white canes and/or sign language, and versions of most physical disabilities that don’t require obvious technological or human aid.
Typical Until Proven Disabled
Just like people are presumed to be heterosexual until proven otherwise, people are also presumed not to be disabled. People without experience in the matter tend to assume that disability is always severe and always obvious. I even remember reading a children’s book designed to promote disability awareness which included, as literally the only examples of disability, a woman in a wheelchair and a man with a white cane. Kids were told, “This is what disability is. You are a kind person if you are nice to these people.” (I sincerely hope the book is out of print, but I probably have to admit that even if it is, there’ll be another taking its place. Since when were you a good person just for not mistreating other human beings?)
So when your disability isn’t obvious, things are different. People assume that you’re not disabled unless it’s made quite clear to them. That can be a good thing, or it can be a bad thing. On the one hand, you might escape prejudice simply because people don’t know you’re a good target. On the other hand, you might be asking for help and not be able to get it because people assume that because your disability is not obvious, it cannot warrant the kind of assistance you’re requesting. People have been told that their assistance dogs are fake, that they don’t deserve handicapped parking, or that they don’t qualify for help at school, just because they don’t fit the stereotype.
Passing
People with invisible disabilities have one dubious advantage: We have the option of “passing.” That means, basically, putting on a mask, pretending you aren’t disabled, and trying to escape prejudice that way. It can work; it can let you do things that the world normally wouldn’t let you do, it can let you be treated as an equal by people who wouldn’t normally do so, and it can stop you from having to explain things every five minutes. But it’s not such an advantage in the long run, because “passing” takes a huge toll on your self-worth. To hide implies that disability is shameful; but to be open about a disability is to expose yourself to prejudice. For fear of being “outed” as disabled, people have hidden their disabilities for years and in many cases gone into burnout-just to be seen as equals. Nobody should have to do that.
Of course, it’s not that people with visible disabilities don’t feel this kind of pressure. It’s often expressed in the form of pressure to prove they’re “just like everyone else, deep down,” as though disability were a simple cosmetic difference rather than something that affected your entire life. It may seem controversial to say it, but disabled people really aren’t “just like everyone else.” We are just as human as anyone else, and most of our lives are made of things we share with every other human; but the differences are there, they are real, and eventually I think we’ll learn that acknowledging and accepting them, rather than politely and awkwardly ignoring them, is the better way to approach the fact of their existence.
The Reality of Invisible Disability
“Seeing is believing,” and that’s just as true when it comes to disability. If they can’t see your disability, some people will think that it simply isn’t there. They may not know enough to understand that dyslexia or fibromyalgia are real. They may assume that people want special treatment or want to “get out of” something. It may even be somewhat threatening to them that some people are disabled, but can’t be picked out of a crowd, safely identified, and mentally boxed up away from everyone else.
Wherever it comes from, being assumed not to be disabled can be a problem when you really are disabled. While being pitied and patronized is an experience I don’t wish on anyone, it can be just as annoying to have your disability presumed to result from a character defect. Before someone clued me in about my own disability, I was assumed to be lazy, strong-willed, dramatic, and overly sensitive. Because I learned to talk on time, I was assumed to be defiant when I couldn’t say what was expected. Because I didn’t zone out and rock for hours, I was assumed to be rebellious for zoning out and not hearing my name called when I was involved in my special interests. Because I seemed intelligent, three-hour-long meltdowns ending in exhausted collapse were put down to being “strong-willed.”
It doesn’t just work that way for autistic kids. Autistic adults, and people with any other invisible disability, have very similar problems-but if they mention their problems, they may easily be told to “stop whining”!
Common Problems, Different Perspectives
It seems to me that people with disabilities face many of the same problems, whether those disabilities are visible or invisible; those problems just seem to have a different spin on them.
We all face the problem of being distanced from society because we’re different. For some people, the distance comes from obvious signs of disability, and from people who are worried about doing or saying the wrong thing, or who even outright pity them. For other people, the distance comes from knowing they’re different, but still having it assumed by others that they are the same. They live knowing they have to work harder or do things differently; that they are different in sometimes small but always important ways-differences that are often ignored and sometimes misinterpreted.
We all face the problem of being prevented from living up to our potential. For those with visible disabilities, there’s the problem of being underestimated, patronized, or passed over because people assume that disability means total inability. For those with invisible disabilities, there’s the problem of being taken seriously as needing accommodations. In either case, the effect is to block the person from what they could do if they had the opportunity to do it.
We all have to deal with a world that assumes our number-one priority in life is to have as “normal” a life as possible. For those who are obviously disabled, that means being expected to “overcome” one’s disability and become “inspirational,” rather than just living whatever life one happens to want. For those who aren’t, it comes in the form of pressure to hide, to work harder, to do things exactly the same way that everyone else does them-even though it’s not the best way-just because it’s what would be expected of someone who isn’t disabled.
That people are treated differently depending on perceived disability says something about how we perceive disability: Namely, we still have two categories we put people into. One category is “People.” The other is “Disabled People.”
We think there’s some big, fundamental gap between people who are disabled and people who aren’t. Ideally, I think, we’d just remember that people are different from each other, and that the differences are something we can acknowledge and even treasure, and that people occasionally need help. Ideally, we’d set up our world in such a way that when people needed help, they could get it. It’s a sort of universal design, only much broader than the usual sense of the term, applied to the organization and social structure of the world. Perhaps in a world where people with disabilities were fully integrated, we wouldn’t need the term “disability” at all, because the gap between your abilities and your society’s expectations simply wouldn’t exist.
I know there were more than fifty-two because, in an effort to integrate the crop of new freshmen just moved in to attend a nearby Christian university, the organizers handed out cards from a deck of playing cards, one to a person, and asked us all to find and get to know the people who had the same numbers as ourselves. (I am almost certain they found this in a book with a title like 101 Icebreakers for Any Occasion.) Of course, by the time I had figured all this out, all the playing cards had been given to people already, and there were more people than playing cards. People without cards were told to go and find anyone else who also didn’t have a card.
Okay, so review this with me: They just told me to make my way through a room where everyone’s talking, attempt to find people without playing cards, and, if I miraculously found them, somehow understand their introductions in the middle of the auditory confusion. It’s no wonder I ended up standing there, looking befuddled, until things quieted down and the class started. In the end, I never did find that elusive group of cardless people.
I mention this partly because I wasn’t the only disabled person in the classroom; there was at least one other, a law student who is blind and apparently had no trouble finding her group. Whoever gave her a card sensibly told her what number was on it.
Of course, the Sunday school leaders couldn’t have known I would’ve been better off if pointed in the direction of the group I was supposed to be finding. I didn’t know that I’d need it, and they didn’t know that I was confused. That’s the thing, though: They didn’t know, because my disability isn’t obvious, and even when people know I’m autistic, they don’t automatically connect it to auditory processing. But this is an example of an incident that illustrates an interesting thing: Whether or not they know you’re disabled changes the way people perceive you; and it changes the way they treat you.
Invisible Disability
So what’s an invisible disability? Well, remember first of all that a disability is a gap between your skills/abilities and the skills/abilities expected of the average person in your society. Simple, yes? Okay.
“Invisible” means that, when the average member of your society looks at you, you don’t fit his stereotype of “disabled”-that is, you’re disabled, but you’re not perceived as disabled. For many people, “disabled” conjures up images of physical disability of the sort which involves visible signs, especially wheelchairs, crutches, or white canes. The disabilities they seem to find easiest to understand are the ones that are most prevalent in the media, and thus the ones they’re most exposed to.
There’s a spectrum of visibility too, of course. Some disabilities are more obvious than others. While there aren’t any easily recognizable autistic facial features, some autistic people are obviously autistic, even to a non-professional, after thirty seconds of observation. Others are obviously odd or disabled after a similar length of time, though they don’t seem specifically autistic. And some don’t trip people’s “disability” stereotypes at all, and are thus assumed to be non-disabled until proven otherwise. (In case anyone is wondering, I tend toward the “invisible at first, but eventually obvious” type. I can “pass” as neurotypical for short periods, but it takes quite a lot of effort.)
Autism is often an invisible disability. Examples of other invisible disabilities include learning disabilities, chronic pain or illness, ADHD, most mental illnesses, deafness and blindness that don’t come with white canes and/or sign language, and versions of most physical disabilities that don’t require obvious technological or human aid.
Typical Until Proven Disabled
Just like people are presumed to be heterosexual until proven otherwise, people are also presumed not to be disabled. People without experience in the matter tend to assume that disability is always severe and always obvious. I even remember reading a children’s book designed to promote disability awareness which included, as literally the only examples of disability, a woman in a wheelchair and a man with a white cane. Kids were told, “This is what disability is. You are a kind person if you are nice to these people.” (I sincerely hope the book is out of print, but I probably have to admit that even if it is, there’ll be another taking its place. Since when were you a good person just for not mistreating other human beings?)
So when your disability isn’t obvious, things are different. People assume that you’re not disabled unless it’s made quite clear to them. That can be a good thing, or it can be a bad thing. On the one hand, you might escape prejudice simply because people don’t know you’re a good target. On the other hand, you might be asking for help and not be able to get it because people assume that because your disability is not obvious, it cannot warrant the kind of assistance you’re requesting. People have been told that their assistance dogs are fake, that they don’t deserve handicapped parking, or that they don’t qualify for help at school, just because they don’t fit the stereotype.
Passing
People with invisible disabilities have one dubious advantage: We have the option of “passing.” That means, basically, putting on a mask, pretending you aren’t disabled, and trying to escape prejudice that way. It can work; it can let you do things that the world normally wouldn’t let you do, it can let you be treated as an equal by people who wouldn’t normally do so, and it can stop you from having to explain things every five minutes. But it’s not such an advantage in the long run, because “passing” takes a huge toll on your self-worth. To hide implies that disability is shameful; but to be open about a disability is to expose yourself to prejudice. For fear of being “outed” as disabled, people have hidden their disabilities for years and in many cases gone into burnout-just to be seen as equals. Nobody should have to do that.
Of course, it’s not that people with visible disabilities don’t feel this kind of pressure. It’s often expressed in the form of pressure to prove they’re “just like everyone else, deep down,” as though disability were a simple cosmetic difference rather than something that affected your entire life. It may seem controversial to say it, but disabled people really aren’t “just like everyone else.” We are just as human as anyone else, and most of our lives are made of things we share with every other human; but the differences are there, they are real, and eventually I think we’ll learn that acknowledging and accepting them, rather than politely and awkwardly ignoring them, is the better way to approach the fact of their existence.
The Reality of Invisible Disability
“Seeing is believing,” and that’s just as true when it comes to disability. If they can’t see your disability, some people will think that it simply isn’t there. They may not know enough to understand that dyslexia or fibromyalgia are real. They may assume that people want special treatment or want to “get out of” something. It may even be somewhat threatening to them that some people are disabled, but can’t be picked out of a crowd, safely identified, and mentally boxed up away from everyone else.
Wherever it comes from, being assumed not to be disabled can be a problem when you really are disabled. While being pitied and patronized is an experience I don’t wish on anyone, it can be just as annoying to have your disability presumed to result from a character defect. Before someone clued me in about my own disability, I was assumed to be lazy, strong-willed, dramatic, and overly sensitive. Because I learned to talk on time, I was assumed to be defiant when I couldn’t say what was expected. Because I didn’t zone out and rock for hours, I was assumed to be rebellious for zoning out and not hearing my name called when I was involved in my special interests. Because I seemed intelligent, three-hour-long meltdowns ending in exhausted collapse were put down to being “strong-willed.”
It doesn’t just work that way for autistic kids. Autistic adults, and people with any other invisible disability, have very similar problems-but if they mention their problems, they may easily be told to “stop whining”!
Common Problems, Different Perspectives
It seems to me that people with disabilities face many of the same problems, whether those disabilities are visible or invisible; those problems just seem to have a different spin on them.
We all face the problem of being distanced from society because we’re different. For some people, the distance comes from obvious signs of disability, and from people who are worried about doing or saying the wrong thing, or who even outright pity them. For other people, the distance comes from knowing they’re different, but still having it assumed by others that they are the same. They live knowing they have to work harder or do things differently; that they are different in sometimes small but always important ways-differences that are often ignored and sometimes misinterpreted.
We all face the problem of being prevented from living up to our potential. For those with visible disabilities, there’s the problem of being underestimated, patronized, or passed over because people assume that disability means total inability. For those with invisible disabilities, there’s the problem of being taken seriously as needing accommodations. In either case, the effect is to block the person from what they could do if they had the opportunity to do it.
We all have to deal with a world that assumes our number-one priority in life is to have as “normal” a life as possible. For those who are obviously disabled, that means being expected to “overcome” one’s disability and become “inspirational,” rather than just living whatever life one happens to want. For those who aren’t, it comes in the form of pressure to hide, to work harder, to do things exactly the same way that everyone else does them-even though it’s not the best way-just because it’s what would be expected of someone who isn’t disabled.
That people are treated differently depending on perceived disability says something about how we perceive disability: Namely, we still have two categories we put people into. One category is “People.” The other is “Disabled People.”
We think there’s some big, fundamental gap between people who are disabled and people who aren’t. Ideally, I think, we’d just remember that people are different from each other, and that the differences are something we can acknowledge and even treasure, and that people occasionally need help. Ideally, we’d set up our world in such a way that when people needed help, they could get it. It’s a sort of universal design, only much broader than the usual sense of the term, applied to the organization and social structure of the world. Perhaps in a world where people with disabilities were fully integrated, we wouldn’t need the term “disability” at all, because the gap between your abilities and your society’s expectations simply wouldn’t exist.