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.”

Half A Glass

This is the speech I gave at the San Diego Pride Spirit of Stonewall Rally.

 

Half A Glass

Imagine in my hands I hold a gllass with a capacity of 16 ounces and it is currently holding 8 ounces. Let’s think about this gllass as my blindness.

Some people tell me I’m amazing for taking the bus, baking cookies or living by myself. The most mundane tasks become praiseworthy because a person with a disability did them. These people would say my imaginary glass is half full..

Then there are people who feel sorry for me. They say things like, “It mmust be so hard being blind” or “Your life would be so much better if you could see.” For them, this glass is half empty,

My question is this: Why can’t it just be half a glass? Disability is a fact, but society loads it with a lot of meaning and insists on foisting that meaning off on the person with the disability. Believe it or not, when I tell people it’s not amazing that a blind person can bake, that it’s just a skill, they argue with me. Argue.Heatedly.

Now let’s think of this imaginary glass as my bisexuality. We are going to pretend I’m that mythical creature – someone equally attracted to more than one gender for my entire life. Some would describe me as half straight. Others would describe me as half gay. My question is this: Why can’t I just be a glass of water? A person attracted to more than one gender?

Unfortunately, people tend to think of us in terms of partly gay and partly straight, as if we can divide ourselves into sections. Nowhere is this more obvious than in LGBT-serving organizations, where we can acknowledge our same gender attractions, but must find somewhere else to express our different gender attractions.

Guess how well that is working for bisexual people? We are the largest segment of the LGBT community, but the smallest group served by LGBT organizations. Our isolation and alienation have led to some disturbing trentds. Commpared to lesbian and gay people, we have higher rates of suicide, depression, intimate partner violence, poverty, poor helath… The list goes on.

So, back to this glass of mine, this glass of identity. In the trans community’s fight to use the bathroom in which they feel safest, we are demanding that trans people are allowed to define their own glass– their own identity. We must extend that same courtesy to people with disabilities, who get to decide for themselves if their disability is good, bad, or neutral. We must allow bisexual people to define their sexual orientation however they wish, not insist they express it in terms of heterosexuality and homosexuality. And we must stop forcing our own definitions onto others and when people tell us who they are, we believe them.

Never Give In?

In the midst of a novel, I stopped dead in my mental tracks when I read, “She had never given in to her disability.” “Given in”? As though disability were a foe or unstoppable force.

To declare that statement foreign to how I relate to my disabilities is a drastic understatement akin to declaring a drop of water the equivalent of the Pacific ocean. (How’s that for dramatic hyperbole? Hold on to your socks because there’s more.)

If the common understanding of disability is a “force” in “opposition” to me, then it makes complete sense that people think I’m amazing for walking out my front door. After all, I have made the Herculean effort to fight against something keeping me in place. No, actually, trying to push me in a different direction.

Our collective consciousness is full of entities in opposition — good versus evil, freedom versus dictatorial constraint, healthy versus infirm and even smile versus frown. No wonder we cannot escape Hollywood’s determination to continue to use disability as a metaphor for evil, a social understanding of disability as life-constraining, the notion that a physical condition is contagious and even that having a disability automatically categorizes you as unhappy. We are in opposition to our condition as good fights back evil, freedom overcomes totalitarian regimes, health is a goal we “achieve” and happy shines forth from sorrow.

What a load of manure. I’m no more fighting against my disabilities than you are struggling to keep your cells all together in the form of your body. You just are and disability just is. Fact, people. Fact.

An Inconvenient Truth

  • Social isolation has been a blight plaguing me for a long time. Ten years ago, when I first began attempting to eradicate it, I acted as if I was the cause. Obviously, I was behaving in a socially abhorrent manner to the point that people actively avoided my company.

Informed by the feedback of others and anything pop psychology had to say, I began rehabilitating my personality and behaviors. “Maybe you talk too much.” “You should have a list of possible topics to discuss.” “Are you showing interest in other people?” “It is your job to put others at ease.” “You need to be understanding of other’s ignorance, educate them and then be patient.” “You need to try harder.” Everything I tried failed and I thought this meant I had failed.

Nobody likes to see themselves as a failure, so I searched for another explanation and began considering how chronic illness limited my outside activities. Without a job and active lifestyle, I was not encountering The Magic Number of People required to find close friends. Armed with this explanation, I got creative about using my energy and became more active in the world beyond my doorstep.

Guess what? Stepping outside did not launch me into a crowd of close friends. Because I kept hearing that doing what you loved would bring people like you into your sphere and be transformative, I modified my approach. Still wasn’t surrounded by a circle of intimates.

I went back to the hypothesis that chronic illness was simply too limiting and added to it. Perhaps blindness’s impact on social interactions, making eye contact, facial expression and nonverbal communication impossible, was severely limiting my ability to connect with others. Concluding the situation was beyond a mere mortal’s control, I gave up.

With nothing better to do, I began working on building my skill set by volunteering and joining a blind group. Now busier than ever, I still cannot find intimate connections, so maybe it isn’t my chronic illness’s limitations? Immersed in a community equally unable to engage in nonverbal communication, I did not suddenly sprout intimate connections, so maybe it isn’t blindness’s fault? Eighteen months of psychotherapy and the only consequence is a therapist who enjoys my company to the point that I had to ask him to enjoy me less and treat me more, so maybe I don’t have a huge personality flaw?

Here is the inconvenient truth that everyone on the planet seems to wish to avoid admitting: Disability makes non-disabled people uncomfortable and there is not a damned thing the person with the disability can do about it. Yes, as a society, we have made great strides in accepting physical difference, but we have not reached the point where having a disability is to simply possess another form of human variation. Eventually, we will arrive at the place I dream about, but not next month or next year. This type of fundamental change moves slower than glaciers and all I can do is my part to keep the process headed in a good direction.

You know what would really help? People not pretending we live in enlightened times where my disability isn’t leading to social isolation. The creative delusions that it is somehow my failing and thus my problem to fix is not only untrue but actively damaging to me and more importantly millions of others. I’m not asking anyone to become my new best friend, but could you at least stop believing this is about me? It’s about all of us.

 

This year I again proudly participate in Blogging Against Disablism Day 2014. For more information, please go to:

fhttp://tinyurl.com/BADday201Blogging Against Disablism Day 2014

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 He Said

I could not have put this better myself if I tried for a week.

http://www.planet-of-the-blind.com/2014/03/the-able-bodied-blues.html

The Cost of Safety?

I signed up for a free class at my local Braille Institute (BI) and received a letter informing me of a new policy.  I will be required to wear a print name badge with colored lanyard – green for student, blue for staff and red for volunteer.  I loath and typically refuse to use name tags in any form because they grant sighted people a social advantage.  I was indignant that an organization serving blind and visually impaired individuals would require me to do this detestable thing.  Of course I marched into an administrative office and expressed my discontent which began what I hope is a dialogue leading to policy change.

BI has reasonable concerns about security heightened by the 2012 shooting at Sandy Hook Elementary School.  They want a means to identify who is allowed on campus versus who might be unauthorized in order to prevent tragedy.  Additionally, there are concerns about identifying people in a disaster situation.  By displaying name and status, they can know who should be present which will keep everyone safe.

Another reason given involved promoting social interaction by allowing names to be known.  In fact, some students have been asking for name tags.  (An excellent example of how people with the same disability can have drastically different preferences.)

Indeed, name tags are a great social lubricant.  Aside from the pragmatic benefits to name recall, people can also address each other by name, granting an essence of friendliness and familiarity to conversations.  Not being able to read name tags denies someone all this social ease.

Blind people are already at a social disadvantage because of society’s eye contact and body language heavy communication patterns.  Heaping more disadvantage onto that is suboptimal and unnecessary.  Though we might not be able to make our culture suddenly cease utilizing visual communication, we can at least not bless sighted people with more social advantage while compounding the amount of social disadvantage blind people shoulder.

Furthermore, because a blind person is forced to repeatedly ask for names, their difference is emphasized in a way that highlights an inability.  It becomes yet one more thing I cannot do that I must broadcast each time I ask for a name. Even in a blind and visually impaired population, a division will still be demarcated between those who can see enough to read the name tags and those of us who cannot.  Advantage for some, disadvantage for others.

Some argue that even if I cannot read other’s name tags, their ability to read mine allows them to overcome communication barriers by giving them a name by which to gain my attention.  Unfortunately, when I have capitulated to the demand of labeling myself, I have noticed no increased social engagement.  And I use the word “label” specifically because putting on that piece of paper doesn’t just give my name, it makes my disability larger than it already looms.

This leads to my second objection – color coding people into the categories of staff, volunteer and student.  In and of itself, color coding can be highly useful as evidence by sports teams, hospital I.D. bracelets and summer camps the world over.  We do not, however, put all the kids in need of special reading help in red shirts, require anyone over age 55 to wear a silver armband or demand people with a specific disability wear a sign.

It is an unavoidable truth that in this situation denoting student status inevitably and accurately indicates disability status.  Because people with disabilities are a protected class known to experience discrimination and violence solely based upon that status, we should not be literally marked as such.

Furthermore, in terms of safety, anyone labeled blind by color or the word student becomes that much more vulnerable.  Who better to victimize than a person you know will have trouble seeing you?  Thus, marking me as a student clearly identifies me as the ideal target.

I understand and support the idea of having a means to know who should and should not be on BI’s premises.  I also recognize the unfortunate necessity for people to carry some sort of I.D. in case of medical emergency or body identification.  I believe there are means to address these concerns without utilizing problematic tools.  Insisting all students carry identification is a place to start.  Having badges with our pictures allows face and photo to be matched which is far less able to be forged than a  simple name.  An I.D. number would help in case of emergency.  A print name could be included if the student requests it.

As for color coding and other means of indicating student status?  There is no methodology that would allow for it because student equals person with a visual impairment.  Besides, what security goals are met by sorting people into the three groups?

Others have voiced additional concerns related to this policy.  Campus vulnerabilities exist that will not be addressed, including no means to detect dangerous items on someone’s person, lack of techniques to minimize congregation of students as they are loading and unloading busses and any means for a blind student to know who should and should not be on campus.  Even lanyards represent a safety risk because they can be caught or grabbed tightening around someone’s neck.

Before turning to safety procedures that create social barriers, highlight difference in a negative way and clearly mark a protected class of individuals, I urge BI’s decision makers to look outside the typical security toolbox to solutions that meet the needs of the unique population they serve.  I appreciate being kept safe, but please don’t force me to pay these avoidable costs for that security.

WHAT WE MISS

In “Flowers for AlgernON,” Charlie Gordon, a man with a cognitive disability, undergoes a procedure that triples his I.Q., only for the experiment to ultimately fail, resulting in a return to his initial level of cognitive functioning. I am reading a novel in which a character with Aspberger’s Syndrome declares Charlie “stupid” for doing it in the first place because “now he knows what he’s missing.”

People born with a disability never experience life without the physiological limitations of their condition and common wisdom is that they never know what has been lost. While I agree they never know what they lack in terms of being sighted or neurotypical or hearing or possessing all limbs or whatever, I would argue that there is a vast amount being missed that such individuals are clearly, concretely and excruciatingly aware is not present – the social perks of normalcy.

Think about this for a moment. People with invisible disabilities – ones not known to others unless they are specifically told — struggle over whether or not to reveal their condition. Why? It cannot be because of the limits of their condition for those are present no matter what. Rather, it is about how others will respond to the new information. It’s about social consequences of possessing the trait of disability.

Anyone with a disability at some point watches those without a disability as they move through life. It’s on our televisions, in our books, on the bus and even in our own families. Non-disabled people are granted an ease in living from social interactions to dating to becoming a parent to joining a group, all because they do not possess a specific trait. They have done nothing to “deserve” this effortlessness nor do they usually realize its presence. It’s expected, counted upon and presumed to never be different.

Meanwhile, people with disabilities tend to live a different sort of life. All that ease and freedom and smooth sailing is denied them not because of the functional limitations of their condition but because of the existence of the condition.

And we know what we are missing. Though we might eventually reach the same destination, the journey will not be the same.

And we will watch people no better or worse than ourselves enjoy social lubrication we can never experience.

And it will be because we possess a trait. It will not be because of the consequences of the trait. It will be the mere presence of it.

Forever, we will be on the outside looking in. Forever, we will know what we are missing.

What I cannot enjoy because of the limits of my visual abilities is an insignificant fraction of what I know I am missing. If I could secretly see everything without anyone ever knowing it – if I acted blind though I could see – I would not feel like I suddenly gained some lost thing. What I will forever miss has nothing to do with not seeing and everything to do with what I do not receive because of blindness’s simple presence.

Here’s the best way I can explain it to non-disabled people:
It is the bar of amazing chocolate on a shelf high above your head that you are unable to reach. Meanwhile, many other people come by, take down the bar of awesomeness, have a piece they devour before you with obvious enjoyment and then replace the bar again beyond your ability to grasp. Over and over again. Your entire life. Maybe with a tiny nibble just often enough so you can never possibly forget the delicious flavor.

I Quit

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.]