What Is Help?

Here is some food for thought. Uncertain what street I am on, I will stop and ask someone. This is categorized as asking for help. Uncertain about what street they are on, a sighted person looks up and reads the street sign. We do not call this help.

A street sign does not magically appear suspended above our heads. It was ordered, made and hung there to aid people navigationally. However, if you can read it with your eyes, the effort behind and purpose for the sign’s presence is stripped away. You are functioning independently by reading information that is just there.

Why?

What Vulnerable Implies

I am in the mood to dissect the word “vulnerable” as it is used to describe groups of people. You’ve heard it a lot this election cycle: “The most vulnerable among us are at greatest risk if x, y and z policy are put into place.”

I’m not attacking the concept of vulnerability that Brene Brown has articulated so well. It is important to be willing to risk ourselves emotionally, especially if we want to find authentic connections with others. Vulnerability on an interpersonal level is great and I only wish I were better at it.

I’m talking about vulnerable, the adjective, meaning suseptible to being wounded or attacked. My issue isn’t even with the word itself, but its application when used to describe marginalized groups who are perceived to be able to be harmed because of their group membership.

I find it to be a very disempowering word. Moreover, I find it to be an inaccurate word. There are two general schools of thought about how disability is defined.  The first says that I am disabled because my body possesses a set of traits that make it impossible for me to do certain tasks, so I’m disabled. Another theory holds that those traits are only disabling because we live in a society with a specific structure that only provides for given tasks to be achieved in particular ways with a limited set of tools. The first theory says I’d be disabled no matter what environment I inhabit, tools I’m given or varied ways a goal can be achieved. The second says that I’m only disabled when I’m placed in a specific set of circumstances and that a different set would not make me disabled. The question turns into this: Am I disabled by something inherent within me or by the world I occupy? I would argue it is the world I occupy.

Back to vulnerable. The way the word is being used lately implies the susceptibility of the group is based on a trait of that group. Vulnerability is reliant upon the group definition. It strips away all societal structure, outside factors and cultural context. Children, seniors and people with disabilities are vulnerable because they possess certain traits putting them at risk. From this perspective, people within “vulnerable” groups are almost victims, without any remedy for their vulnerability.

I beg to differ. Our vulnerability comes from the world we inhabit. The laws, policies and practices of our society make us vulnerable. If we lived in a world where seniors were given enough money to live a reasonable life, including access to medical care, etc., sufficient to meet their needs, would they still be “vulnerable”? Similarly, if all children had access to the same high-quality education, sufficient food, clothing and shelter, safe places to live and parents equipped to nurture them, would children be “vulnerable”?

The way our world works makes certain groups susceptible to attack and harm, not the nature of the group itself. When people talk about the most vulnerable among us being at risk in a Trump administration, they are tacitly agreeing to a version of reality that assigns the cause of the vulnerability based on the characteristics of the group. People with disabilities are vulnerable because their bodies work in certain ways, not because they happen to inhabit a world functioning with a specific set of rules. It is like defining how a race can be won so narrowly that most of the competitors cannot actually win.

I have no idea how to solve this problem because I don’t currently have a word or phrase to replace vulnerable. The best I can do is “people made vulnerable by our society.” So, for now, one could say, “A Trump administration appears poised to inact policies that will place those our society has already made vulnerable more at risk.”

Election 2016

Rarely if ever have I posted something overtly political, but this is too long and complicated for Facebook and I believe it needs to be said.

Millions of us are shocked and heart-broken over the results of the U.S. presidential election. The sentiment expressed by many is that hate triumphed over good and misogyny, racism and bigotry ruled the day. Characterizations of the winning side have been harsh, angry and negative.

Guess what? Those who support Trump would use equally negative, hateful words to describe us. They believe we are a bunch of selfish, godless deviants determined to destroy this country. When our negativity comes up against theirs, what happens is a deepening of the divide that exists in the social fabric of our country.

Michelle Obama said, “When they go low, we go high.” It is time for all of us to pick our words carefully, to use language that is not laden with judgment and loathing, and to try and find our common ground.

People worry about what Trump winning teaches our children and I think that’s a valid concern. What does our reaction to his victory teach them?

The question repeated over and over is this: How did we not see this coming? Blaming it on pundits and pollsters, politicos and journalists misses the larger lesson that will be hard for us to swallow. We weren’t listening. A large segment of American society was trying to tell us something about what it means to be them, to articulate an experience foreign to our own. Not only did we not hear them, but we often silenced them.  Instead of practicing tolerance, instead of trying to understand, instead of meeting them on their own territory, we blocked them out, shot them down and shut them up.

When you are fighting with your sibling, friend or spouse and neither of you are listening to each other, what happens? The conflict doesn’t get resolved, people’s feelings get hurt and everyone suffers.

We lost. A silenced group of people came out, exercised their right to choose our country’s destiny and finally they were heard. We can either respond with the same old loaded language that got us here in the first place or we can realize we missed something incredibly important and significant and start to figure out what it is and what common ground we can share.

Yes, they might believe things that are misogynistic, racist and bigoted. They may want to purge the country of anyone who isn’t white, able-bodied and Christian. Their beliefs scare me spitless. Increases in suicides, violence against marginalized group members and prevalence of hate-based graffiti leave me cold down to the marrow of my bones. Tolerance, though, is not about how we treat those who agree with us. It’s about how we treat those who do not agree with us, who believe things that make us sick. Fight policies that engender racism, misogyny and bigotry. Demonstrate basic respect for those who believe these things to be right. I think the expression is, “Hate the sin, not the sinner.”

Mourn our loss. Cry, scream and be devastated. Hug your friends, find community and find your strength. Then, take a moment to consider how you would want the “other side” to behave if Secretary Clinton had won and do that. Not what you think they would have done. What you would have wanted them to do. “Go high.”

I found this article to do a great job of offering context and articulating a path forward. Knowing the pop culture references is not necessary to understand the author’s points.

http://www.stonekettle.com/2016/11/bug-hunt.html

Pride with a Side of Alienation

Last July, I attended a Pride rally which flooded me with a wonderful sense of community, while simultaneously left me feeling alienated. When it comes to things like rallies, I often experience this same mix. Attending to enjoy the sense of community and common purpose, I tried to soak up the vibe only to ingest a nice dose of “But You Don’t Count” along the way.

I know the event was a rally about LGBT pride, focusing on issues that impact the non-heterosexual population and meant to highlight our bonds of community and common purpose. If everyone had stuck to LGBT issues exclusively, I might have not felt like “other.” However, from issues of racial equality to immigration, border security to employment rights, many speakers addressed other “liberal” causes. Lists of marginalized groups who we should stand with in their fight for equality were mentioned. Not once did disability pass the lips of any speaker. Not once.

As I sat in the “ASL” seats – because apparently only Deaf people need accessible seating – I listened to one man talk about LGBT youth. He rattled off one statistic about how many LGBT young people report hearing negative messages about their identity from the mouths of public officials. Suddenly, it dawned upon me. We think of negative messages as damaging. How harmful, though, is that which is left out entirely?

When George Takei asked us all to stand, face the flag and recite The Pledge of Allegiance with him, I had no idea where to look. As Norma Chavez-Peterson of the American Civil Liberties Union asked for us to join in the fight to help all oppressed people, those with disabilities were left off her list. A universal message of love and social justice permeated each speech I heard, yet not one person managed to identify people with disabilities as one class of individuals needing support in their fight for equality.

What message does that absence send? To me, it says that I am not thought of when issues of social justice are considered. My marginalized group is not one deserving of the same help and solidarity. I don’t matter enough to be included.

The ways people with disabilities are divergent from other marginalized groups is often the reason given for why we are not included in the list of social justice causes. We need special things that cost money, we are unable to do stuff and you can point to some substantive difference engendering more negativity than skin color or gender preference. Our difference is not viewed as diversity, making us separate from other social justice causes. And, as we all know from school integration, separate is inherently unequal.

So, as I tried to connect with my LGBT community, I had to stop thinking about my identity as a person with a disability. I could either be a member of the group being celebrated or a member of a group not thought worthy of mentioning. Very healthy for my self-esteem.

At least there is an honesty in all this. Should someone have thought to include people with disabilities, it probably would have been in word but not deed. So, for the lack of hypocrisy, I am grateful.

Blinded By Jealousy

Even when I was partially sighted, I never used the term “visually impaired” to describe myself because it was too avoid-the-reality-by-using-a-warm-and-fuzzy-word for my tastes. Instead, I simply used blind.

Life has recently caused me to re-examine my feelings about this. A friend who is partially sighted and I shop at the same grocery store. We’ve noticed that employees who have worked with one of us first then assume the other one is exactly the same in terms of abilities and needs. The initial blind individual a TAB meets seemingly becomes their working definition of what it means to be blind, shaping assumptions that inform their expectations, perception of needs and predictions of ability. When the same word is used to describe markedly different individual circumstances, TABs cannot manage to grasp the difference.

These TAB behaviors shaped by the assumptions formed from observation of two people self-described as blind but with differing vision are at the core of the tension between those who are totally blind and people with usable vision. The totally blind are annoyed with those partially sighted for creating unachievable expectations in the minds of TABs. Those with usable vision are irritated when totally blind individuals describe themselves as visually impaired for the lower expectations engendered in TAB minds.

Guess what the common thread is here? Expectations of TABs. Aren’t they the ones to hold responsible for their tendency to assume one blind person is representative of all blind people? Yet, within the blindness community, much energy is expended arguing about blind versus partially sighted instead of viewing TAB attitudes and actions as the source of the friction.

Unfortunately, all that neat and clean logic hasn’t helped me. Spending time with people who can see some and identify themselves as blind, I have increasingly become frustrated. Their usable sight puts tools in their toolbox I do not have in my own. With these tools, they are able to do things not possible for me. For example, follow another person without needing verbal cues, identify landmarks even if they are just a blob and perceive grass from dirt by color. While they may seem small, they add up to something meaningful.

There is a flavor of privilege in those who are partially blind that irritates me. By using the same term, the benefits of usable sight are dismissed as unimportant. Think about it. I can’t make eye contact and that has major social disadvantages. Someone partially blind may be able to simulate or achieve eye contact and reap social benefits. How is that not privilege?

I’m really struggling with all this. I think using the word “blind” to label yourself is completely understandable and reasonable regardless of the amount of usable vision one might possess. I just equally find it frustrating that the privilege bestowed upon those with some vision goes unacknowledged by them. I want such individuals to call themselves whatever they want, understand they have privilege kind of like African Americans who can pass as white have privilege and not pretend we are exactly the same. Privilege is about socially sanctioned benefits based on social perception of the individual. If I could pass as a white, able bodied, heterosexual man, then even if I were a black, disabled, female lesbian, I would still receive privilege. How unfair would it be to pretend otherwise?

What’s the Opposite of Pity?

I’ve been reading about race relations in 1962 Atlanta, Georgia, and repeatedly hatred has been the focus.  In fact, when it comes to issues of diversity based on race, gender, gender identity, sexual orientation, ethnicity and religion, hatred is one of the dominant emotions.  (When the prejudice manifests itself in an act, we call it a “hate crime.”)  The way bigotry toward these marginalized groups is combated involves fostering states opposite to hatred, such as kindness, compassion and understanding.

On the other hand, hatred is not an emotion I associate with the prejudice I experience as a person with a disability.  Pity is the primary culprit and unlike hatred, it does not have opposites that come to mind which can be promoted within the hearts of people without disabilities.

To make sure we are all on the same page, let’s open a dictionary.  Pity is defined as “sympathetic or kindly sorrow evoked by the suffering, distress, or misfortune of another, often leading one to give relief or aid or to show mercy.”  Among its synonyms are words like compassion and commiseration.  While perhaps not a pleasant emotional state, pity is not, unlike hatred, given the stamp of social sanction.  An act springing from pity is considered an act of mercy, making it very hard to quash.

Looking at the antonyms of pity, we discover three broad categories.  There are the good words, the bad words and the neutral ones.  Opposites to pity with a negative bent are cruelty, harshness, hatred, meanness, mercilessness, disfavor, malevolence, unkindness, and disdain.  Slightly more palatable are disinterest and detachment.  The positives are cheer, happiness, joy, advantage, blessing, and good fortune.

Think about this for a moment: To combat racism and sexism, we encourage states opposite to hatred.  In the case of disablism, to promote the opposite of pity would either involve fostering something like cruelty or hatred, working toward indifference, or trying to somehow convince people that disability is good fortune.  That is a lousy, impossible set of options.

It’s far clearer to say, “Don’t hate someone.  Feel compassion, kindness and love,” than to say, “Don’t pity someone.  Feel…”  What?  Indifference? Cruelty?  I suppose “joy” isn’t a bad idea, except I can’t conceive of how you get a nondisabled person to go from viewing disability as negative to not simply tolerable but joyful?!

Dissecting all these linguistics has given me some new insight into why disablism is so intractable.  In a world where pity is a virtue, how do you eliminate it?  When its opposites range from the good to the bad, what ultimately becomes your goal?  When even the positive states are going to be impossible to sell, in the end what do you have left?

Someone suggested to me that the opposite of pity is confidence.  “I don’t pity you.  I believe in you.”  Faith in my ability as a person with a disability to do what needs to be done is definitely more of a place to start than I had before the suggestion was made.  I’m still not certain, though,  how you get people from the condoned “You poor thing” to the place where they view disability as something other than tragedy.

Misconceiving

Transgender(ed) people have an expression used to describe the way another person looks at them, sees certain identifiers they link to a particular gender and then assigns them that gender.  Misreading. 

 

An androgynous person with a prominent Adam’s apple is read as male.  If they instead had long nails and heavy eye makeup, they would probably be read as female.  In our heads, we all have traits we consider “male” and traits we consider “female.”  Based on their presence or absence, we assign gender.  a collection of traits goes into someone’s head and out pops a gender label.

 

This drives some trans people nuts.  So what if you can see their Adam’s apple?  If they call themselves female, then they are female.  Period. 

 

People with disabilities are misread in an entirely different way.    For us, it starts with a single entity – white cane, dog guide, wheelchair, prosthetic, support cane, hearing aid, use of ASL or informational disclosed – that identifies us as disabled.  From there, we are assigned traits and entire lives are created for us in the mind of another.  We are a word that leads to an entire story.

 

Maybe the word “misreading,” already claimed by another group to mean something specific, is the wrong term to use.  Maybe it should be “misconceiving,” which has the element of *creating* in its crafting. 

 

To the stranger who has decided they know what my life must be like, I can say, “You are misconceiving me.”  They might not know what I mean, but the explanation “You see my disability and then create this concept of what you think my life must be like which is inaccurate,” is far easier to give than debunking each false belief, one after the other. 

 

A broad term to convey a cognitive tendency.  Works for me.

Magic Words

About a year ago, I hit a wall known as My social Life Sucks. Nothing I tried – and I tried everything short of a personality transplant — seemed to increase my social connections or generate more emotional intimacy in my life.

Enter my fabulous therapist – a fifty-year-old man who somehow gets it. He’s made it clear from day one that he knows nothing about disability, yet I felt more understood in my first session than I have with the majority of my friends. When I tell him I think I get ignored in groups because I’m disabled, he not only believes me but understands why it happens. That’s valuable in a way words cannot express.

We have hit an impasse related to my social interactions with non-disabled people. FabTherapist believes there are a string of words I can say that possess sufficient potency to get people to notice who I am. A carefully crafted handful of sentences have the power to shift perception from “Blind, incapable, weird looking person” to “Smart, funny, intelligent woman.” His argument is that people meet someone like me and suddenly don’t know their role. For a stranger, the situation is full of unknowns, fears and a general sense of uncertainty. Giving them some context and a function in the social dynamic will allow them to feel comfortable with me, freeing them to notice who I am.

I believe words have power. They don’t have that much power. Non-disabled people need time and exposure to move past their initial impression. The problem is that most don’t take that time and in fact, their subconscious writes me off often without consulting the conscious mind. There are no magic words to subjugate this process.

Okay, there is something that has the power to derail things – shock. It’s why some women with disabilities dress provocatively — to shock potential dates out of the “not sexual” mindset.

What would I need to do in order to shock people? Would that be in line with my personality?

“Yes, I’m blind. Be careful. You don’t want that to cause you to underestimate me. That would be a bad idea.” The last sentence would be delivered with a slow smile. Not even sure I’m capable of a slow smile on purpose let alone uttering those words.

If I could conjure up the MagicWords, I still get stuck on the idea that I should have to say them. It’s not my job nor should I take on the task of easing non-disabled people past their prejudice. Disability is not exclusively the responsibility of the disabled. As a society we have created this state of affairs and as a society we should deal with it.

Besides, if I noticeably aid people in coping with their discomfort, I’ve set a precedent. “You made me comfortable, Jen. Now, when it comes to your disability, I expect you to do all the rest of the work too.” Do I want to establish such a pattern?

Yet, inaction will not change anything. Principles are great, but they don’t make you feel loved and valued.

Besides, women have needs. And hormones. and needs that go beyond hormones.