The Importance of Communication
It has been my firm opinion for some time that the fundamental issue facing the disabled today is the problem of access to communication.
That might seem a bit of an overstatement; but think about this: If you are disabled, that means you don't have some skill or ability that the average person is expected to have. The solution for the problem is, in general, to find some other way to fulfill whatever role that skill plays: Use more effort, and rest more in exchange; do things a different way; use low-tech or high-tech equipment; or hire someone (or have family/friends) to do it for you. In general, that last option--having an aide who does things for you--is the last resort, because it's the one that carries the most risk that someone will attempt to take your right to make your own decisions. However, self-determination can be lost even if you need no assistance, and kept even if someone does practically everything for you--everything, that is, except communicating what you are thinking.
Communicating your ideas, opinions, and feelings is the one thing that nobody else can ever do for you. It is the one thing that you absolutely need in order to make your own decisions known. Not allowing you to communicate is the easiest way to deny you your rights as a human being.
Removing barriers to communication, then, should be a major focus of the disability rights movement.
There are three basic kinds of barriers to communication: Societal barriers, which other people impose on you; internal barriers, which you may (likely unknowingly) impose on yourself; and technological or logistical barriers, which are gaps in adaptive technology and accommodations.
Societal barriers come about when people deliberately or out of ignorance deny you the right to communicate. Examples include:
The solution to the problem is the same solution that is employed by any group of people breaking away from prejudice: Insist on your right to communicate; insist on your right to make your own decisions; and don't back down. Many minorities have done it before, so we know it's possible. Eventually, with enough disabled people obviously making their own decisions and living their own lives, the people who are simply ignorant, having soaked up the prejudice in their environment, will eventually come to have a more realistic picture of what being disabled actually means.
The majority of people are not actively prejudiced against the disabled; and if the majority who are passively prejudiced learn more, then those who actually do hate or look down on the disabled will be in the minority. Once they are the minority, social pressure reduces their influence and allows widespread change.
But that doesn't work all that well if you don't get rid of your internal barriers. These are the little voices in the back of your head that say, "I'm disabled; I should be subservient to the doctors/my aide/my parents/etc," and, "It's easier to just go along with things," and, "I shouldn't be demanding; I shouldn't be a burden," and, "I don't want to look weird; so I'll sacrifice the strategies I use to communicate well for the semblance of normalcy."
Internal barriers to communication are almost inevitable in today's society, simply because, just as the average person soaks up disability prejudice without meaning to, so do we. Disabled people can be prejudiced against each other; and we can be prejudiced against ourselves. We can sell ourselves short, assume we're incapable; we can hold the belief that doing things a different way is invalid because it's not the "normal" strategy. We can refuse to ask for help, refuse to rock the boat. We can even end up so beaten down by constant insistence that we are incapable that we forget that it is even possible to make our own decisions.
Know those barriers. Know yourself; know your environment. Ask yourself where those little voices are coming from, and whether what they're saying is actually true. Ask yourself whether you're working under the assumption that things can't change, that you'll never be listened to, or that you're incompetent. Be aware of the strategies others use to deny you the right to communicate. Also insist on others' right to communicate--even if only by providing an example to the people you meet that tells them, yes, a disabled person can think for himself, decide for himself, and guide the course of his own life.
Once those societal and internal barriers are removed, technological/logistical barriers are almost a trivial problem. In many cases, adaptive technology can fill in the communication gap to the point that human help isn't needed. In other cases, the need for human help is reduced, or communication is made faster, more precise, or usable for a wider "audience" (for example, a VOCA can be understood by most people, while only the closest family and friends may be able to understand the user when he communicates verbally.)
The main problem we face with these barriers isn't that we don't have the technology or can't make the accommodations; it's more that people aren't very used to thinking out of the box. Non-disabled people tend to assume that, because they're in the majority, the way they do things is the only way to do them. When they think of "communication", they think of spoken and perhaps written language. Anything other than that seems foreign and awkward. When communication alternatives are considered, they are often sorted simply on the basis of how closely they can approach spoken language, rather than efficiency and ease of use.
Many people believe that speech is the same thing as communication. But that fundamental assumption is a mistaken premise: Speech is only a form of communication. Communication itself is simply the act of moving ideas from one brain to another. The methods used to move those ideas are only communication strategies--not communication itself.
Accommodations related to communication can be blocked not because people are not willing to provide them, but because people make false assumptions. If you had, for example, lived your whole life eating only food cooked in a microwave, and never encountered the idea of stoves, you might equate the idea of cooking with the necessity for a microwave, and assume that anyone who didn't have a microwave couldn't cook food. You might not even think of the possibility of installing an oven instead.
The development of accommodations and technology for communication can suffer from a similar lack of lateral thinking. People who have lived their whole lives speaking verbally don't tend to spend much time thinking about all the other ways that communication can be accomplished. But, as I have mentioned before, if the internal and external barriers to communication can be removed, then these issues won't be nearly as much of a problem as we think they are now. People who don't think of disabled people as inferior, interacting with a disabled person who doesn't believe that he's inferior, won't insist that communication must all take place the same way, any more than you (who likely hold no anti-stove prejudice) would insist that a microwave was the only legitimate way to cook food.
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That might seem a bit of an overstatement; but think about this: If you are disabled, that means you don't have some skill or ability that the average person is expected to have. The solution for the problem is, in general, to find some other way to fulfill whatever role that skill plays: Use more effort, and rest more in exchange; do things a different way; use low-tech or high-tech equipment; or hire someone (or have family/friends) to do it for you. In general, that last option--having an aide who does things for you--is the last resort, because it's the one that carries the most risk that someone will attempt to take your right to make your own decisions. However, self-determination can be lost even if you need no assistance, and kept even if someone does practically everything for you--everything, that is, except communicating what you are thinking.
Communicating your ideas, opinions, and feelings is the one thing that nobody else can ever do for you. It is the one thing that you absolutely need in order to make your own decisions known. Not allowing you to communicate is the easiest way to deny you your rights as a human being.
Removing barriers to communication, then, should be a major focus of the disability rights movement.
There are three basic kinds of barriers to communication: Societal barriers, which other people impose on you; internal barriers, which you may (likely unknowingly) impose on yourself; and technological or logistical barriers, which are gaps in adaptive technology and accommodations.
Societal barriers come about when people deliberately or out of ignorance deny you the right to communicate. Examples include:
- Making decisions without asking clients (a danger in institutional settings, but also when a disabled person lives with family)
- Assuming that because someone does not use language, he cannot communicate
- Ignoring a person's behavior (thoughts can be read from behavior, even when language is unavailable)
- Assuming that disabled people do not want to know the details of their own illness/disability, or are incapable of understanding their own diagnosis
- Refusing to tell a mentally ill or cognitively disabled person his own diagnosis
- Talking to a visibly disabled person's companion, rather than directly to them
- Refusing to make use of alternative communication strategies (for example, refusing a sign-language interpreter to an autistic person with serious auditory processing issues because the person can technically hear)
- Asking a caretaker about the disabled person's preferences and opinions, especially when the disabled person can communicate them perfectly well himself
- Assuming that someone who has psychosis, is developmentally delayed, or can be declared incompetent to make his own legal decisions for some other reason, also cannot be trusted to communicate his own ideas or make decisions that don't involve legal contracts
- Having meetings about the disabled person without letting them attend (IEP meetings, for example, often do not include the child because he is still a minor, even when he would be quite capable of attending)
- Making decisions about disabled people without consulting them--everything from designing adaptive technology to passing new laws
- Deliberately using jargon, euphemisms, or other obfuscating strategies, when it is known that the person will not understand them; refusing to simplify or re-state when asked to do so
- Taking away AAC equipment; refusing to approve the purchase of AAC equipment
- Not teaching disabled people to advocate for themselves (especially a problem for disabled children)
- Dismissing a person's ideas and opinions because they are disabled, or because they are not medical professionals
- Not allowing enough time in meetings or appointments to allow for communication strategies that take longer than typical conversations
- Not allowing interpreters to accompany the disabled person
- Forcing the use of a non-preferred communication strategy; for example, forcing a Deaf person to lip-read and speak when he is much more efficient at sign language and runs the risk of missing important information if speech is insisted upon
- Assuming that because speech is impossible or difficult for someone, reading will also be impossible
- Insisting on a specific communication method, such as the use of a telephone, written communication, or speech, even though this is very difficult or impossible for the disabled person (for example, insisting that a dyslexic person communicate via e-mail when a telephone is readily available)
- Teaching disabled people, overtly or by implication, that they should not expect to make their own decisions because they are disabled
The solution to the problem is the same solution that is employed by any group of people breaking away from prejudice: Insist on your right to communicate; insist on your right to make your own decisions; and don't back down. Many minorities have done it before, so we know it's possible. Eventually, with enough disabled people obviously making their own decisions and living their own lives, the people who are simply ignorant, having soaked up the prejudice in their environment, will eventually come to have a more realistic picture of what being disabled actually means.
The majority of people are not actively prejudiced against the disabled; and if the majority who are passively prejudiced learn more, then those who actually do hate or look down on the disabled will be in the minority. Once they are the minority, social pressure reduces their influence and allows widespread change.
But that doesn't work all that well if you don't get rid of your internal barriers. These are the little voices in the back of your head that say, "I'm disabled; I should be subservient to the doctors/my aide/my parents/etc," and, "It's easier to just go along with things," and, "I shouldn't be demanding; I shouldn't be a burden," and, "I don't want to look weird; so I'll sacrifice the strategies I use to communicate well for the semblance of normalcy."
Internal barriers to communication are almost inevitable in today's society, simply because, just as the average person soaks up disability prejudice without meaning to, so do we. Disabled people can be prejudiced against each other; and we can be prejudiced against ourselves. We can sell ourselves short, assume we're incapable; we can hold the belief that doing things a different way is invalid because it's not the "normal" strategy. We can refuse to ask for help, refuse to rock the boat. We can even end up so beaten down by constant insistence that we are incapable that we forget that it is even possible to make our own decisions.
Know those barriers. Know yourself; know your environment. Ask yourself where those little voices are coming from, and whether what they're saying is actually true. Ask yourself whether you're working under the assumption that things can't change, that you'll never be listened to, or that you're incompetent. Be aware of the strategies others use to deny you the right to communicate. Also insist on others' right to communicate--even if only by providing an example to the people you meet that tells them, yes, a disabled person can think for himself, decide for himself, and guide the course of his own life.
Once those societal and internal barriers are removed, technological/logistical barriers are almost a trivial problem. In many cases, adaptive technology can fill in the communication gap to the point that human help isn't needed. In other cases, the need for human help is reduced, or communication is made faster, more precise, or usable for a wider "audience" (for example, a VOCA can be understood by most people, while only the closest family and friends may be able to understand the user when he communicates verbally.)
The main problem we face with these barriers isn't that we don't have the technology or can't make the accommodations; it's more that people aren't very used to thinking out of the box. Non-disabled people tend to assume that, because they're in the majority, the way they do things is the only way to do them. When they think of "communication", they think of spoken and perhaps written language. Anything other than that seems foreign and awkward. When communication alternatives are considered, they are often sorted simply on the basis of how closely they can approach spoken language, rather than efficiency and ease of use.
Many people believe that speech is the same thing as communication. But that fundamental assumption is a mistaken premise: Speech is only a form of communication. Communication itself is simply the act of moving ideas from one brain to another. The methods used to move those ideas are only communication strategies--not communication itself.
Accommodations related to communication can be blocked not because people are not willing to provide them, but because people make false assumptions. If you had, for example, lived your whole life eating only food cooked in a microwave, and never encountered the idea of stoves, you might equate the idea of cooking with the necessity for a microwave, and assume that anyone who didn't have a microwave couldn't cook food. You might not even think of the possibility of installing an oven instead.
The development of accommodations and technology for communication can suffer from a similar lack of lateral thinking. People who have lived their whole lives speaking verbally don't tend to spend much time thinking about all the other ways that communication can be accomplished. But, as I have mentioned before, if the internal and external barriers to communication can be removed, then these issues won't be nearly as much of a problem as we think they are now. People who don't think of disabled people as inferior, interacting with a disabled person who doesn't believe that he's inferior, won't insist that communication must all take place the same way, any more than you (who likely hold no anti-stove prejudice) would insist that a microwave was the only legitimate way to cook food.
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