Beyond What’s Comfortable

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In all the promo emails of a band I like, they talk about giving to others beyond what is easy or comfortable. Reading between the lines, I think the idea is that giving to others when it is not much effort is a superficial gesture that while helpful to the person receiving your largess, does not come from the core of you. To connect with your core – to give in a way that moves beyond yourself to put the focus on another person,– is really what it is all about. Besides, giving to others shouldn’t involve you and your ego, instead it should be about the person and their needs.

Whenever I’ve read one of their brief references to this life philosophy, I’ve thought, “That. It’s about that.” Until five minutes ago, I hadn’t gone past that reaction to think about why the sentiment speaks to me on an instinctive level while not being a universal no-brainer to the rest of the population.

I think it’s about the nature of my life and the choices I make each day. Long ago, probably before I understood the concepts, my decisions about what to do and what not to do stopped relating to the ideas of easy and difficult. For someone with a physical disability, tasks can be harder than for the non-disabled people surrounding them. Quickly you realize that if you want to be a part of the world, you need to not let tough be a deciding factor. Rather, it needs to be about want, need, can and cannot. If I want to do it and I’m capable of it, then I do it. On the other hand, if I want to do it and no effort in the world will make it possible (i.e., a blind person becoming a neurosurgeon), then I need to rethink things.

My life is full of choices about desire and possibility not ease and comfort. It is no wonder that when it comes to giving to others, I instinctively don’t think in terms of effort and ease. I make decisions about aiding others based on their need, my ability, and my desire to help, largely based on how much I care about the person. And based on what these musicians are saying, this might be where I fall short.

Should helping be limited by how much you care? When I think about it with me as the helper, I see reasons to answer yes. Cast in the role of helpee, I have reasons to support the opposite perspective.

I like to think making helping decisions based on the amount I care is about allocating resources. I’m one person with limited energy and should probably distribute that resource with care. However, careful conservancy of energy is not dictated by caring. I’ve simply used that as an easy, convenient way to make choices. Possibly I need to move beyond using the easy benchmark of caring to other more selfless factors?

Far clearer are the variables when I am cast into role of helpee. Of course total strangers should help me if they can. Time, effort, convenience and caring shouldn’t limit others. I need help (damnit), so help me. And, yes, on some level I’m that ridiculous. I suspect anyone would be if they were standing on a street corner, confronting crossing a highway off-ramp, and pretty certain of becoming road pizza if they step off the curb.

The challenge in modern society is to find a way to navigate seeing many people in need while working with limited resources.  Our decisions should be less about ourselves and more about the one we would aid.  From what I can tell, many are challenged by having to look beyond their own ease and discomfort.  Once you move past those factors, others — like allocation of resources and decisions about who — are the new hurdle.  It isn’t like once you stop thinking about comfort and ease the situation is magically clear.  It just becomes about other factors that equally call upon us to dig deep and walk a path that requires us to care about those we don’t even know.

PTSD. Again.

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In mid November 2013, I stopped writing in this blog. I had another traumatizing experience during a medical procedure and was unable to function normally let alone write anything that touched upon emotions. Coming back to this blog was prompted by a need to learn how to use WordPress on my iPad for the Braille Institute class. Then Braille Institute decided to establish a name badge policy and outrage worked as an awesome motivator.

Now it is time to write about what happened. As you read my recollections, please keep in mind that trauma is often stored in our brains not as narrative memory but as snapshots leading to disjointed recall.

I woke up from a trachea stretch with a tube keeping me from speaking and unable to move properly. There was a lot of chaos around me with people saying thins like, “Jen, squeeze my hand.” Nobody said things like, “Jen, I’m <insert name> and I’m going to do this.” Nobody appeared to be focused on keeping me informed of events or trying to establish a line of communication.

The tube came out quickly. The inability to move properly resolved itself. The damage was already done in the moment when I came to consciousness and couldn’t move, speak or understand what was happening, isolated in a scene of chaos. More trauma came as I learned that the situation might have been avoidable if better choices had been made by some of the clinicians involved.

Upon arriving home, I knew I would have some sort of reaction to my experience, but I wasn’t quite sure what. It took about twenty-four hours before the first signs became obvious. I walked across my kitchen and set the toaster oven tray in the sink. Then I crumpled to the ground in a ball and sobbed. There was literally absolutely no immediate cause for the tears. They just happened.

The uncontrollable sobbing became my life with tears unpredictably surfacing one to three times a day. I could be reading a book or chatting on the phone or sitting in a meeting and tears happened sort of like a sneeze – there are things you know will cause it, ways to possibly delay it, but sooner or later, it bursts forth.

Eventually I learned those delaying tactics, making being out in public somewhat more possible. Sometimes I was even able to identify what caused the tears and what emotions I was feeling. Once in a while it was even related to immediate events and not past trauma.

There is something unique about re-traumatization – having experienced trauma, developed PTSD and been successfully treated only to endure a situation similar enough to be the equivalent. then you are coping with PTSD from the recent trauma along with PTSD from your history of similar trauma. In some ways it is like light reflected between a multitude of mirrors so that the intensity of light is greater than any component part. It’s wildly exponential math. It’s emotion magnified, refracted, blenderized and placed in a pressure cooker with a faulty valve.

My entire life ground to a screeching halt. I gave up any notion of doing anything more than going to therapy, walking the dog and making sure we both ate and slept. I did things requiring use of my hands – sewing, baking, knitting – to fill my mind with something because it left less space for trauma. I didn’t visit my family for the holidays. I only talked to people who didn’t make me more upset. I kept asking for topics of conversation to be dropped before I lost it. Again.

Time passed and I was able to control enough of what was happening to begin tentatively living. Then, I knew another trachea stretch was on the immediate horizon because that’s how my stenosis works.

Part of my PTSD symptomology is that I cave in front of anyone I see as an authority figure or more of an expert in a field. Talking to doctors was harder than… crossing an eight-lane highway without a cane, dog or even audible traffic signals. I did it badly. I somehow got through it.

This time, the procedure went smoothly. With a positive experience the most recent in my memory, my life has settled down. I have been able to resume my regularly scheduled existence, just with way more therapy and a conscious commitment to real down time.

Here’s the interesting part. I’m being put back together in better shape than I was before November 15, 2013. I’m not doing it consciously, but I see things happening inside myself that I know will lead to a stronger me. I’m still having trouble wrapping my head around that.

 

A Letter to My Readers

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Hi everyone,

I have a funny feeling there are about 3 people who still remember this blog even exists, but….. Optimism, right?

I wanted to offer my apologies for completely blowing off this blog for over six months. Writing has nnnot been at the top of my priority list. Instead, I was running here and there, engaged in various community activities. I was attempting to live my life, as opposed to writing about my life.

Guess what? I miss writing more than I would have expected, a point driven home for me when I wrote something recently. I’ve been storing content over the past year or more, so I will be posting it, as long as it is still relevant, appropriate and reflective of my current mindset.

Hang on to your hats because some of this is rather intense. I’ve had quite the year.

 

An Inconvenient Truth

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  • 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

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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

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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

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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

Who?

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Pop quiz time everyone. Sharpen those pencils – or maybe in this day and age it’s create a new note on your phone – and get ready to answer a few simple questions.
1. If you needed a ride home from the emergency room, who would you call?
2. You need to move a piece of furniture that’s too heavy for you alone. Who can you ask?
3. It’s Thanksgiving and you aren’t cooking for anyone. Who will include you in their celebration?
4. You are sick with the MartianDeathFlu. Who will offer to come over and make you something to eat?
5. Who will go out of their way to come give you a hug on a bad day?
Now, on your list, please remove anyone in your family or that you are dating. Take off coworkers as well. Who does that leave you with?
One of the consistent problems plaguing my life is a lack of someone to help and support me. Whether the pragmatic or the more intangible of emotional support, I seem to routinely have no answers to the above questions.
For example, last time I needed to move my couch, I had to open the sofa bed up, pull out the mattress, put the frame back together, move the couch and then reassemble everything. Yes, it worked. No, it wasn’t any fun at all. I suspect the dog was plotting how to have me assessed for insanity.
Why, though, did I ask you to remove family, significant others and coworkers from your answers?
Many people with disabilities have complicated, difficult relationships with their families and are not close in the way necessary to receive ongoing support. While they might need the love and support relatives can give, the mere fact of dependency frames the entire situation in parent-child terms for that is the model we all know – the person needing care is the child and the person offering is the parent. Even when it comes to elderly family members, the relationship between those individuals and their children is often discussed in terms of the parent “becoming” the child. We don’t have a language or paradigm that allows for needing another family member in an ongoing, dependency based way that does not reflect an adult child relationship. and who wants to be a grown up having to accept the limitations of childhood in order to get their needs met?
People with disabilities are often more socially isolated than their TAB counterparts, find dating to be more challenging and more frequently are single as opposed to part of a romantic relationship. This means we are less likely to have significant others or spouses to lend a helping hand.
With the unemployment rate of people with disabilities at something between 60 and 75%, coworkers are often not a part of our personal landscape either.
This leaves us with our friends to turn to in times of need. In our twenties and early thirties, when many people live more care-free lives, reliance upon friends works great. They need you. You need them. Everyone gets their needs met. It’s not perfect, but things tend to work out most of the time.
Then TABs begin to pair off, acquire mortgages and kids and car payments and friends become the parents of your kid’s friends, people you share a meal or glass of wine with and those you keep tabs on via Facebook. Meanwhile people with disabilities have often not shifted to these life “milestones” and still need the friendships that sustained us in our twenties. We haven’t been able to replace those relationships with others and this creates a big void that often becomes evident logistically yet probably impacts the individual most on an emotional level. After all, you can go through an insane process to move your ridiculously heavy couch, but who will come give you that hug?

The Cost of Safety?

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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

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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.