Tag Archives: education

The You Cants

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Any person with a disability is entirely too familiar with the phrase, “You can’t do that.” If the Obstinacy Gods smiled down upon you at the time of your birth, you are temperamentally pre-disposed to say, “Says you, not me.” Should the Obstinacy Gods not have been so benevolent, hopefully experience, parents or teachers instilled the same reflexive reaction in your soul.

For me, being explicitly told I couldn’t do something in my mid to late adolescents did cause the reflexive reaction described above and I often steamrolled ahead to prove the person wrong. Unfortunately, the “You Can’t”s are typically not explicit statements you can then disprove. Rather, they are insidious attitudes and lower expectations. Nobody says you can’t do something, they just don’t expect it from you which subtly changes the landscape in fact making it harder to accomplish the goal.

Long before a teenager learns to drive, they are exposed to all sorts of information about driving from simple observation to more tangible experiences like sitting on a parent’s lap behind the wheel. People talk about the person some day driving. “Your Barbie drives a Corvette. Do you want to drive one when you get older?” It is assumed the person will one day drive and, guess what, they typically do.

Now, take a child with significant learning disabilities. Somewhere along the way, the adults in this kid’s life have gotten the idea into their heads that the child will never drive. Suddenly, all that exposure and assumption and planning and passive education vanish. It is often done to protect the child from “unrealistic expectations,” but simultaneously strips away all the advantages everyone else gets simply through the typical course of living. Not only does the child with a disability have to learn how to drive, they also must do it without any support and lacking the tools other kids are given to accomplish the task. That’s….. nuts.

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.

 

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.

Misconceiving

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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.

Perspective

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At FabTherapists’s recommendation, I have joined group therapy. After two sessions, the jury is still out as to whether or not it will be beneficial. One goal is for me to intentionally work on how I interact with non-disabled people in an environment where I can get feedback. In other words, if another group member offered me help I didn’t need, I could actually question the person about the impact of my response and their initial motivation.

Last week, someone discussed how their job was making them unhappy and stressed. As they were leaving work ruminating on this, they walked past a vet who was a double amputee and “it put my stuff into perspective.”

I hate when people do this and had a rather intense response. It did not go well and the therapist said, “That pushed your buttons. Next week how about you come back and explain why.” I decided that a blog entry would be an excellent way to clarify my thinking.

My first objection is that life stressors should not be compared. Each of us is a unique individual possessing certain personality traits, backgrounds, coping abilities, resources and so forth. How we each deal with life stressors should be viewed separately in the context of who and what we are. Invalidating your own life stressors based on your perception of others’ circumstances being worse minimizes and invalidates what might be a truly distressing situation for you. It’s not fair to do that to yourself.

My second objection has to do with the way disability is being viewed. To make a comparison, an impression of what the disabled person’s life must be like has to be formed. What is that impression based upon?

All the societal beliefs about disability that we are taught come into play to create a picture of what that person’s life must be like. Often, such knowledge is based on inaccurate information, distorted images portrayed by the media, stereotypes and misconceptions. It eventually boils down to seeing the life of the person with a disability as being les happy, more burdened, less rewarding and more stressful. The person with a disability is suddenly relegated to a place of less, lacking and unhopeful.

When I have questioned those who view my life as “hard,” I hear about how it must be awful not to be able to see x, y and z, how I can’t enjoy a, b, or c, and how I won’t ever be able to do j, k or l. I *never* hear about how my life must be hard because I live in a world that sees me as less, has distorted ideas about blindness, treats me as a child and refuses to perceive my value. Which do you think is actually what I would label the “hard” part of my life?

And that’s the reason why what my fellow group member said bothered me to such a degree. They just diminished the double amputee vet to a “hard” life based on physical limits. He wasn’t a father, brother, or lover. He was someone whose life must be so stressful that it makes one grateful for the paltry stress they have. Personhood was stripped away. Value was ignored.

It isn’t that much of a leap to go from “They just reduced that man to nothing” to “Do they see me as nothing?” I struggle every day to find ways to be valued for who I am, to be connected by love and affection to other people and to live my life authentically. The last thing I want is for my life to be reduced to someone’s means to feel better about their own existence. *I* just got lost in that equation and used in the process.

To answer my group therapist’s inevitable question, “How does that make you feel?”

Devalued. Invisible. Used. Angry. Frustrated. Resigned. Tired. Hopeless. Sad.

Worthless. Scared.

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.

The Culture of Silence

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A friend used the phrase ‘a culture of silence’ to refer to the normative standards of behavior, cultural beliefs, individual attitudes, social structures, and societal barriers that dissuade marginalized people from sharing their experience. Women keep quiet about sexual assault to avoid the blame and shame attached to speaking up. Transgendered people don’t discuss their gender identity out of fear, at best, of being labeled “freaks.” Poor people stay silent about their impoverished state so as to not be labeled a slacker, told they should just go find a job, or be pitied.

 
In contemplating all the times I swallow my words, I have begun to wonder what part of my silence is tact and what part subtle duress?
Then I came across a news clip about a student with developmental disabilities who was bullied by her teacher.
Watch here.
What shocked me was not that such events transpired for I know such situations are common. I was surprised that the parents went to such great lengths to prove their child was not lying. Educators relied upon the culture of silence to protect them, but it didn’t work. Thank goodness it didn’t work.