Category Archives: Why? WHY? W*H*Y???

My attempts to understand why TABS do what they do.

Events Previously Known As Legend

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Every once in a while, a sequence of events unfolds that I previously thought only happened to someone else. And I had never in fact met that someone else. They were events found solely in rumors and I had more than a passing suspicion they were urban legends.

Well, the other day, I went out to the bus stop and sat next to a woman. We exchanged small talk before I zoned out. When I came back to reality, some man was standing before me offering me something. I’d missed the naming of the something.

“Hold out your hand,” he demanded.

“For what?” I asked.

“A dollar for you to take the bus,” he explained.

“No, that’s okay. I have a bus pass, so I’m good.,” I replied.

The man went over and sat on the opposite side of the woman on the bench, and then said, “When God gives you a blessing, it may not seem like a blessing, but you should take it anyway because blessings come in unexpected ways.”

“Uh, okay.” I said.

The woman on the bench is moved to get involved. Turning to me, she said, “I think you hurt his feelings.”

I did a flabbergasted open and closed mouth thing and ignored them.

You can’t make this stuff up because nobody would believe you if you did.

I Quit

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I’ve decided to stop being bisexual. I am neither relinquishing my attraction to more than one gender nor am I going to cease mentioning that I am bi when it is relevant. I’m merely done trying to be a member of the bisexual community.

The reason is simple: I won’t be the kind of disabled person necessary for inclusion. I am no longer willing to follow these rules:

A. Do not talk about my disability.

B. Do not discuss my disability-related needs.

C. Smile and be grateful for any bit of attention “lavished” upon me.

D. Embrace or tolerate the “Let me help you, poor thing” attitude that comes with any aid.

E. Allocate my disability-related needs to the realm of wants subject to the “whims” of people’s “kind” hearts.

F. Let prejudice behavior and policies exist without naming them as such.

So, today as the bisexual community comes together to celebrate and raise its visibility, I am taking a giant step away from that community until I can be both disabled and bisexual at the same time.

I have not made this decision lightly or in haste for it is only after years of working as a leader in my local bisexual community that I have come to this crossroad. The last three months, as I’ve taken time from that leadership to focus on health issues, I have watched as any acknowledgment of disability vanishes from the activities of the local bisexual community

Then, too, there is the behavior of the bisexual community on the larger national scene. My comments on accessible practices have been snubbed. Requests that people think about accessible formats are not acted upon. Disability might as well be a planet in another galaxy given the amount of attention it receives.

Finally, there are the individuals that compose the bisexual community. I am the eight-year-old child at an all grownup party that never conceived of a child being present. While this is not substantively different from how I am treated in heterosexual social situations, I would have expected more from a collection of people who routinely experience social isolation and discrimination.

Today, more than nineteen years since I left my closet, I am not exactly returning to that enclosed space. I’m leaving the bisexual building and only going back for brief visits when my bi friends invite me. Maybe the whole “Be polite to guests” principle will apply.

[If you are left thinking, “Wow, she’s angry,” then go read the previous entry for my perspective on anger.]

Confession

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…It’s good for the soul, right?

Recently every time I turned around, there seemed to be a person with a cognitive disability. Whether passing on a sidewalk, riding on the same bus or the person helping me in the store, there they were. Everywhere. Over and over.

I am noticeably uncomfortable around people with cognitive disabilities. I never know what to say, do or think. Though not my finest trait, is my own discomfort a parallel experience able to teach me something about TABs?

A useful distinction can be made between my feelings and actions. My unease comes from a complete inability to figure out the person in question. I have absolutely no way of knowing the nature of their disability let alone their functional limitations. This means I don’t know if I should use simple language, speak slowly, ask questions to confirm understanding, repeat myself, or….. You get the idea. I don’t know how to relate and that feeling leads to my get-me-out-of-here impulse.

And, okay, I also have internalized a belief about people with cognitive disabilities behaving unpredictably. It’s not that I would be hurt out of malice or intent. Rather, they might do something that would be fine if I could see but disastrous since I cannot. That increases my unease.

And my actions? I take a deep breath, set my feelings aside and treat the person LIKE what they are — A PERSON. My only unusual behaviors involve word choice and meaningful eye contact. (Believe it or not, you can do meaningful eye contact without working eyes. I can’t explain how, but I’ve recently realized I can instinctively do it.) While I probably don’t manage to entirely hide my feelings, I do my best to minimize them.

Why? I know my reactions are based on stereotypes, misconceptions and ignorance. That is really the only thing distinguishing me from a non-disabled person who behaves sub-optimally around me. I recognize my feelings are not fair, reasonable or appropriate and take steps to remove them from my decision-making about behavior.

I think my point bears repeating in a slightly different way. How you feel does not need to be how you act.

My own vast experience around issues of disability makes it possible for me to understand my own internal reactions. Because most non-disabled people lack such a background, they don’t have a framework to guide them. Can they be given one?

While the bottom line about changing non-disabled people’s attitudes and actions around disability comes down to education and exposure, perhaps the message needs to be different. If my primary motivation starts with a desire to treat the person before me like a person, then maybe non-disabled people need to first be made to recognize our shared humanity. That lesson must simultaneously come with the message that they probably possess little to no accurate information about disability.

Unfortunately, when people feel ignorant, they tend to avoid the situation. I’m not sure how to convey shared humanity, ignorance and a necessity to not run away all at once.

Responsibility Teflon

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I know we’ve all met that person – the one who can somehow avoid responsibility for *anything.* It is as if they’ve been sheathed in teflon and nothing will adhere to it. Ever.

The most drastic cases involve those who frame their lives in terms of things “done to them” that have resulted in bad outcomes. (Ever notice victim mentality is only present when it comes to bad outcomes?) More insidious cases exist in which individuals effortlessly float through life with nothing ever being their fault. They’re just “following their hearts” or “honoring their feelings” or “not engaging in negative self-doubt” or “practicing self-compassion.” In and of themselves, each isn’t a bad thing when done in moderation. Some, however, have raised their use to an art form. In the process, they acquire Responsibility Teflon.

I believe that perceiving me as amazing allows non-disabled people to don this same Responsibility Teflon. I’ve previously mentioned three ways non-disabled people conclude I am amazing – expecting less of me because of my disability, misunderstanding what it would be like if they walked in my shoes and lauding me for overcoming obstacles. Each is predicated on the idea that the “problem” is contained within me. She doesn’t have functional eyes, so I should expect less. If I didn’t have functional eyes like her, then I couldn’t do that. She doesn’t have functional eyes which would make that activity harder. It’s all about my biological difference.

The interesting part is that by making it all about my difference, non-disabled people have framed the situation in terms of my body, my abilities, my interactions, my defects. When it is all about me, Responsibility Teflon morphs into existence.

A crucial factor, how our society functions, is being left out of the equation. My difference only becomes a problem when my world doesn’t take it into account. Imagine if I lived in a world where my difference was accommodated by all information being conveyed visually, auditorially and tactilely. Would I be so amazing in that environment? Not really. I’d be simply another person going about her business.

I’m certain someone is now thinking, “Yeah, and you would also not be amazing if you could just see.” Following that line of argument, if all people were the same color, racism would disappear. If all people were of the same gender, sexism would vanish — along with our species’ ability to exist. Disability is a fact of human variation. Only when our society places meaning on human variation do we have things like sexism, racism and disability as individual defect.

When a non-disabled person observes me crossing a street, they could think I’m amazing for being able to do that. They could also think that they participate in a world that doesn’t take my need for auditory street signals into account. In the former, while they feel all warm and fuzzy for praising me, they are putting on Responsibility Teflon. In the latter, they are skating perilously close to assuming some accountability for the world they inhabit. You know, the same one I have to function in?

Amazing Revisited. Again.

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Don’t roll your eyes, but I’m back to that “amazing” thing. Again. This time with something new. Promise.

I get to a doctor’s office via my dog, my feet and a bus. When the receptionist discovers this, she is in awe of me. Previously I’ve thought about this behavior in two ways. I’m amazing because I have failed to live down to the low expectations another individual has. I also become amazing when a person imagines walking in my shoes and decides I am doing something they could not. Now I think there might be a third possibility related to obstacles.

When people consider me going from point a to point b, they generate a mental list of all the steps that they think involve sight– assessing traffic to cross a street, determining what bus pulled up at the stop, getting on the bus and finding a seat, knowing what stop to disembark at and so on. Each of these tasks becomes tagged as “obstacle for blind person” in their heads. Because I have surmounted these obstacles, I become “amazing.”

This mental process is distinct from the first two, for there are no assumptions made about what I cannot do. The accolade is *earned* by doing things perceived as *challenging*, granting the praise the distinctive flavor of possibility. My amazingness is engendered not by doing the impossible but by accomplishing the unusual.

I have less objection when amazing is about overcoming an obstacle. I’m not performing magic, just doing something that might be hard. I can live with aspects of my life being perceived as hard, calling for skills most haven’t cultivated or even simply requiring above average persistence. It feels far less dismissive of…me.

Many people with disabilities, myself included, have issues with the concept of overcoming. The root lies in the fact that typically what we are seen to overcome is our disability, not the physical and social barriers society has created. To me, blindness is my natural state of being, so deciding that I have overcome it seems absurd. Do people of color overcome their skin color or the societal inequities and prejudice they encounter? Do cis-gendered women overcome their biology? Disability is a form of human variation that is an inherent part of the person possessing the trait. They’re not something you can discuss in terms of overcoming.

So, while being seen as amazing for overcoming obstacles is not totally insulting to me, I do take issue when the obstacle is perceived to be my disability. It’s like seeing me as amazing for overcoming my curly hair or extraordinarily narrow feet. The concept literally makes no sense. Fish, here’s your new bicycle. Ride it.

The Ultimate Excuse

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At a symposium on disability, I attended a wide array of workshops, but the same theme kept repeating. “They don’t know what to do,” was related to how TABs deal with invisible disabilities, approach our sexuality, deal with us in public, offer or avoid giving aid and the list goes on. About half way through the day, it struck me — not knowing what to do has become an all-purpose excuse with incredible power that simultaneously liberates TABs and imprisons people with disabilities.

If I describe to a friend an annoying encounter with a non-disabled person, I am invariably told, “They didn’t know what to do.” This explanation is proffered as the conclusion to the conversation, seen as explaining everything and making further discussion unnecessary.

Any emotional upset on my part should be assuaged by this rationalization. Blaming the non-disabled person becomes impossible for holding someone responsible who didn’t know better is perceived as mean-spirited. Further conversation is made irrelevant for the explanation is known. Everything vanishes with six little words.

Each time this happens, I feel as if I began a journey that ended five seconds later. It is a foreshortening of what should be a conversation or at least a chance for emotions to be vented. Though this happens frequently, each time I still feel caught between my unresolved feelings and social pressure to accept the excuse. The end result is the minimizing, silencing and dismissal of my experience and feelings.

When a TAB uses the axiom “I don’t know what to do,” I find it even more infuriating. Admission of a lack of knowledge, in and of itself, is not a bad thing. What this confession of ignorance is allowed to achieve is problematic. Feelings of discomfort or fear can be dismissed, any associated guilt is alleviated and need for further action eliminated. This potent combination allows the non-disabled person to go merrily on their way.

From my knowledge of disability issues, I have learned that TABs often feel uncomfortable when they are presented with the possibility of interacting with a disabled person. This unease can come from a multitude of sources – fear from having to think about potentially becoming disabled, concern that they will become entangled in a situation where they need to do something unpleasant, not wanting to admit ignorance, discomfort with an unusual appearance and… You get the idea.  Instead of acknowledging or dealing with these thoughts and emotions, the person waves the magic want, “I don’t know what to do,” and – poof – all of that unpleasantness vanishes.

There may still be residual guilt or a sense of obligation. “Someone really should be helping that person.” The thought continues, “But I don’t know what to do.” Obligation, guilt and responsibility disappear.

I have no idea why not knowing what to do has become an acceptable justification for needing to do nothing, but it has. I’m not certain if this is unique to issues related to non-disabled people confronted with disabled folks, but it is definitely true in this case. Finding out what to do is not contemplated as a potential course of action. “I don’t know” becomes “I don’t have to.”

What I find intriguing is that “So ask” never comes into play. My suspicion is that this is because people with disabilities are not seen as the ultimate experts on their own needs nor are they considered people capable of communicating. We are seen as our disability and that fact is all consuming of TAB awareness.

Thus, “I/They don’t know what to do,” functions as an ending. No more discussion is needed. No action should be taken. Until that changes and “I/They don’t know what to do” begins a journey to find the answer, a situation that could lead to better understanding is squandered.

Ironically, “I don’t know what to do” has no power when spoken by a person with a disability, except maybe to open the flood gate so suggestions as to how we can fix it drown us. If we don’t know, we have to fix it. If they don’t know, we have to live with it. Meanwhile, those who don’t know in the first place move forward unimpeded.

Acquiring Objectness

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I and other disabled people have a unique talent. We can transform ourselves into objects. Here are some examples of people instantaneously morphing into things.

When flying, I need help transferring from one gate to another. This is not true for all blind people, but it is what I do. The airport provides someone to do this and they are the people who also push passengers in wheelchairs.

To avail myself of this help, I must wait until someone shows up and usually until the plane is largely empty. If I were waiting along with a man who uses a wheelchair and an older woman needing special help, likely as not you will hear one flight attendant call to another, “How many wheelchairs do we have?”

Now, to be clear, they aren’t asking how many wheelchairs are waiting outside the plane. They are looking for the number of people who need assistance. I get that they are using some sort of short hand, but really? They could ask how many escorts they need or even assists. There are ways to talk about me without me having to become a thing.

Sitting on a bus, I listened as the driver tells everyone waiting to board, “I have to unload a wheelchair.”

Apparently I took snarky pills because I said, “Um, person?” He didn’t reply.

Finally, this happened to a friend who ordered a coffee at a local Starbucks. She did tell the barista her name, so I can’t think why they then wrote on her cup “wheelchair.” Seriously. It said, “Wheelchair.” Was she supposed to pour it on as some kind of new lubricant? Clearly the chair didn’t pay for the coffee…

What does It Take?

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I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from

I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from

I’m convinced there’s some unknowable and Mysterious Act that if I only discover and do, I’ll get the support I need. Telling people I’m not alright hasn’t worked. Appreciating the support I do get so as to encourage more fails. The other day at the end of a rough yoga class, I spent five minutes sitting in a fetal position. Even that didn’t elicit a single expression of concern.

I’m beginning to feel more than desperate for some ongoing support. In my soul, I feel a scream building that might explode at any moment. I want to grab one of the people who purportedly cares about me and shake them as I ask, “What do I need to do to get you to notice the emotional hell I routinely occupy and get off your ass and do something?”

What ever happened to unselfish compassion? Loving someone enough to do what they need even if it’s inconvenient and hard? Acting without someone giving you explicit, help-by-the-numbers directions? And I’m not talking about a one-shot deal here. I’m talking about consistently over a period of time being there for someone *because someone has to*.

Pragmatically, the support also needs to come from more than one source. I do have a couple of people who make their supportive presence known, but each has other responsibilities that necessarily come first. They do what they can. They cannot do it all. That’s why people have a collection of friends, not just one.

As a society, I have noticed the tendency to approach life with a triage mentality. Unfortunately, the measure of what is and is not emergent solely seems to rest upon how much smoke is visible. What looks worst at an unthinking glance gets the attention. I, who communicate my struggle with simple, calm words doesn’t look like a critical case. Stooping to theatrics in order to be seen as worthy of aid strikes me as wrong. And, in fact, it would lend credence to and affirmation of behaving badly in order to get attention.

I don’t want attention. I want support. They are not the same thing. If they were, then I’d be thrilled when people pour on the praise for my mundane “achievements.” Since I tend to cringe, brush off the compliment and change the subject, I can pretty much assure you that attention and support are not synonymous.

Instead, when I seek support, I get things like:

“Jen, I can’t even imagine dealing with what you deal with, so I don’t know what to say to you.”

How about this: “I can tell you are truly upset and hurting. What can I do to support you while you deal with it?” Now was that so hard?

“Jen, you are so inspiring. How you deal with what you deal with amazes me.”

Well, great. The amazement has become the center of the conversation, making it about the other person and pushing my pain into some dark corner. So helpful.

“Jen, I can’t watch you be so negative. It’s too painful to me.”

Now the other person’s pain has trumped mine because watching me go through hard stuff is harder than going through the hard stuff. How is that even possible?

“Jen, I know it will be alright.”

Great. Meanwhile, I’m in pain, but it has been dismissed as unimportant because it won’t last forever.

By word or by deed, many who say they care about me dismiss, minimize and otherwise make irrelevant the overarching reality I occupy *right now*: I’m fighting my way through some very difficult, painful things without sufficient, reliable support. How can that be acceptable to anyone who truly feels affection for me? I no longer doubt that I deserve and am worthy of support. I now question the affection others express. Is caring real if it never translates from feeling into action?

Don’t Watch!

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There are times when I stand on the sidewalk, Camille Guide Dog Extraordinaire at my side, trying to figure out some navigational complication. Often I’m simply trying to “hear” what’s going on. Passers by may stop and ask or offer assistance — an appreciated gesture that I sometimes accept gratefully. Unfortunately, a response from me of “No thanks. I’m good,” can result in problems.

People step back and *watch*.

I know this because when I get past the challenge, they might comment, my ears may pick up a slight sound or I can feel the weight of their eyes upon me.

So, there I am, trying to sort out a mobility issue, while somebody hovers. It’s creepy. It’s annoying. It’s rude. And, if I were sighted, it wouldn’t be happening.

Most significantly, it shows a profound disrespect for my own judgment for if I’ve said I can take care of it, standing to watch implies at least a suspicion I am wrong. Well, either that or some over-the-top fascination with how I function as if I’m an exhibit at the zoo. (I am not an animal in the monkey house. Promise.)

There is one crucial fact that might escape the average non-disabled person. Taking time to listen to my surroundings allows me to deal with situations as I study them with my ears. I may be working through a set of circumstances that challenge my skills and if people always save my butt, I will never learn how. Saying “No thanks,” can be me granting myself a learning opportunity. Those are good for me, right?

I suspect people’s motivation to stand and observe usually comes from a good place. They don’t want me to get hurt. While I value the goal of keeping me in one piece, I still cannot stomach it when someone lingers. It’s yucky. And did I mention creepy?

So, I am declaring anyone who walks away when I say, “No thanks,” off the hook if I turn out to be wrong and break a body part. Absolution is yours.

But I know this won’t be enough. Here’s a way to handle it that helps the non-disabled person feel good about leaving whilst demonstrating respect for me.

Tell me your concern while acknowledging your ignorance and taking responsibility for the discomfort you feel with moving on. “I don’t know much about how blind people navigate. I don’t know how you would handle x situation which is making me unreasonably concerned.”

Make it your fault – because it basically is – and see what happens. Since nobody has ever done this to me, I can’t guarantee the response. I can say that it would feel better than the hovering. Much better.

I encourage you to go forth and try it, then come back and leave a comment. I need data.

Through My Eyes

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When I meet a TAB (temporarily able-bodied) person, they are not the first, second, or even third member of that community I have encountered. Having grown up in non-disabled society, I am very familiar with what it means to be non-disabled. I know about mortgages and kiddie carpools and working moms and stay-at-home dads and midlife crises and divorce and being elderly. I have been steeped in non-disabled culture to such an extent that it is second nature to understand the lives of the non-disabled people I meet every day. I don’t need to have lived the experience to relate to it because of my massive exposure.

I am quite often the first disabled person a TAB has ever met. That individual has no frame of reference, no vast exposure, no years of observing other disabled people to help them relate.

Instead, TABs rely on other means to understand such as imagining what it would be like if they were blind. Unfortunately, lacking any knowledge of the specialized training I’ve received or years of experience I’ve gained, TABs can create a very skewed impression of what my life must be like. They then call upon this inaccurate perspective to attempt to comprehend, evaluate and judge my life.

These efforts fail miserably resulting in things like: “Wow, you are so amazing. I can’t believe a blind person can…” “I’m so inspired by you.” “It’s such a shame you can’t see.” “You must not be totally blind because you just…” “You can’t see, so let me do that for you.”

People can become very entrenched in their beliefs, assuming thirty seconds of imagining what it would be like to be blind is more accurate than the reality I–a blind person–describe. I’ve had arguments. Lots of them.

TABs thinking they understand what it’s like to have a disability better than someone *with* that disability are not limited to imagining walking in our shoes. Basic beliefs about how the world works can inform reactions. Those who think people are essentially good have trouble comprehending someone being unkind to a person with a disability. Customer-service people tell me to ask my neighbor to read my mail believing they would read the mail of their theoretical blind neighbor. Folks who believe our social-welfare system is adequate and flourishing act like I have help coming out of my ears to accomplish any task I want. How a person sees the world impacts how they see my life.

I’m discovering this phenomenon of “I know better about you than you” is more insidious than the smell of skunk spray. From strangers, it is somewhat excusable for they have little data to use besides their own imaginations, view of the world and some dimly remembered after-school special. Friends, however, should in theory know better because they have evidence gained over time both through observation and direct conversation. And yet, often friends of years fall back on this attitude of knowing better than me what it is like to be me.

This phenomenon is not unique to the disabled versus non-disabled populations. Men think they know what it’s like to be a woman better than women. “Oh, honey, that guy in the hardware store wasn’t being condescending. You’re overreacting.” Those outside a marginalized group often dismiss what a member of that marginalized group conveys about their experiences substituting their uninformed outsider view for that of an expert.

When, exactly, did it become reasonable, let alone smart, to take the opinion of a lay person over that of an expert?

I just lost a friend because of this. He firmly believes that his assessment of how I’m reacting to my current emotional turmoil is somehow more valid than my own. He’s never lived through any of the things I’m struggling with, but he is certain it’s perfectly reasonable and possible to handle them in a better way. I refrained from saying, “How about you try and let me know.”