The "hot topic" today is names - as in should people who are blogging about the Autistic family members use the names of those Autistic family members? - I guess it is also classified as "Confidentiality"
My immediate response is "well, yes, duh!" - but let me delve into that one further. WARNING: My head is going to wander around the topic of names, naming and secrets. My point is that you have to own what you are before you can explain it to others and ask for understanding. Self-advocacy requires using labels (names) that others can identify with in order to connect with the people around you who are going to support (or at least tolerate) your idiosyncrasies (weirdness). OK, here comes my *academic* treatise on "names"...
I am named after a legendary German mermaid of the Rhine River who lured men to their deaths by crashing their boats in the rocks. In some name books my name translates as "man-catcher". I was told by my mother at the age of 14 that my father found this name in a National Geographic. Apparently his first choice had been "Bambi", and when he read my name in the magazine and suggested that it had a good ring, she IMMEDIATELY agreed. My father has long defended his choice of "Bambi" as being feminine and delicate [?!]. I was already a C cup by the age of 14, a tall leggy blonde from Southern California. Yes well.... I seemed to have narrowly missed being forced into the oldest profession by my name! I often tell this story and joke OPENLY about it - because it does NOT define me.
My name is nearly impossible to pronounce correctly when you read it first. My father, in his infinite creativity, spelled my name incorrectly on my birth certificate, so I truly have A Name Like No Other. In Jr. High, my 8th period teacher read our names for roll the first day, and mispronounced my name for the 8th time that day. My classmates, who had heard the correction made 7 times already that day, corrected him. He found it HILARIOUS that the whole classroom corrected him, and so intentionally said my name incorrectly EVERYDAY thereafter. In True math teacher fashion, he thought it was funny every time, all 180 days of the school year. I have NEVER corrected a person who mispronounces my name again. As a matter of fact, the priest who married me called me the wrong name for years, and was corrected only hours before the ceremony by my bridesmaids. It was a very loving act on their part.
My married surname is VERY long, and spelled exactly like it sounds - in German - except that it is NOT German, it is Pennsylvania Dutch, and there is no record of the name in Europe - though there are American records dating to the 1600's. The family genealogy on my side of the family shows that same "Amercanization" of names several times [Krieder to Crider to Grider - etc.] After getting married, I often introduced myself as the "Nameless Frau".
I have been told that my name sounds like a "tropical flower" - the Latin root for some mysterious species. It has been misspelled by countless teachers and friends for years, and mispronounced by telemarketers and phone professionals eternally.
I often find my name pretty much useless.
In fact, most people simply address me without naming me, only using a title like Mrs., or Teacher, (Miss Teacher is always cute), or Ma'am. Even my family often just uses affectionate titles like Honey, Sweetheart, or Sugar.
I did not earn many monikers as a kid (with the exception of the variations of my name - the teachers who just could not conquer it) - can't think of a one. Even when I chose my own aliases, they just didn't stick. I did have a Camp Name (Girl Scouts, high school) was used for about 1 month. I have an Alias in the Single Actions Shooting Society - it took 3 years to finalize it, and most people still just call me by my "real" name. I earned a new Camp Name about 3 years ago (Big Mama) - and that one gets used a lot.
But WHO I am is NOT what you call me.
I respond, now, to several names (Mrs. D, Big Mama, Mom...) and what you call me indicates what you need from me, what role I play for you, but it does NOT define me. Who I am, what I expect from my self, the purest, Truest elements of me, do not change - no matter what role I am filling. Your name for me reminds me of the job I am doing at the moment, of the tasks I need to complete to help/ serve you, but they don't make me.
I read "Look Me In The Eyes" by John Elder Robinson, and one of the interesting things he mentions from the outset is that people do not have names to him. The "given" name by which the rest of the universe calls them is irrelevant. The label, the handle, the title, the name that he assigns them is all that he can remember without undue effort. One Autistic boy who comes to the pool with us has names for all the staff. Each lifeguard has a name from him, that the boy uses consistently for each of them (Biggs, April, Exterminator, ...) that are not our "names" - but they are to him. He goes out of his way to find each of the staff and address them specifically by his name each time he comes.
Ultimately a name is just an Adjective, a descriptor for a particular context.
So let's talk about confidentiality...
I am clearly a "live out loud" person. I am pretty much incapable of having a secret and keeping it secret. It's been that way since I can remember. There are a few times I learned hard lessons about what other people think is secret and shouldn't be shared - I am starting to pick up on that one! ;) An excellent example of my transparency is the story of the time I got a little tipsy at dinner with my staff. One of them drove me home after dinner, and when asked by co-workers what I did, he said, "She just told more stories, faster." When I apologized to him he said, "No, don't apologize! It just means you are are really you, you wear your heart on your sleeve." I seek to be Genuine, and as a general rule, I find that the more you explain yourself, the better off you are - you create opportunities for others to see a sense of identify with you, which leads to connection, which leads to being helped and or protected by that person - creates friends, not enemies. In true Aspie fashion I find that I over front load sometimes and scare (overwhelm) people, but usually they get over it.
Don't think that with his transparency I have never been hurt, or insulted, or judged by others. Don't make the mistake of assuming that I am brave enough to "be me" because I am naive, or sheltered, or arrogant. It has been a conscious decision, made when I was in Jr. High, that I would be as honest with and to myself as I could be so that I could be honest with others. I spent years wishing I was different, doubting myself because of others, denying my gifts and abilities to fit stereo types imposed upon me by myself or others. I still do sometimes.
Confidentiality is a tricky, messy word. In my experience "confidentiality" is really used to say "secrets" - specifically "that make you feel bad about yourself." Confidentiality is about "hiding" something. Who exactly am I supposed to be hiding things from? Every job application requires I could swear in a court of law about my ethnicity, my driving record, my employment history, my credit history... they could track down any info they want! Who am I hiding info from? Definition comes from use & context, so let's look at some places the word is used:
Like medical confidentiality. Comes up in first responder work often... the victim or patient may reveal something relevant to you in a medical emergency that they do not want broadcast - though, of course, the more you know about the victim the better chance you have of helping them so that they heal. Examples are pregnancy, use of medications, or previous injuries. I don't get it - leaving out information like that could get a person killed!
Maybe you refer to the injury that comes from abuse, with the emotional guilt. You mean the kind where someone beats you and then tells you not to tell your parents? The school I was at during the primary grades would beat our hands with a wire bristle brush, until they went numb... and we were told not to tell. Or when the teacher berated you in front of classmates because you didn't show enough respect - and told you that your parents could be killed any day? But this conversation is private... It took five years before I finally let it slip to my mom what was happening. Being open about it solved the problem.
Am I supposed to be secretive and "confidential" about my past? Am I supposed to hide those events that have shaped me into who I AM? So I should deny that I have made grave mistakes? Or that I regret some things I have done? I am not saying that I killed a man... but I am willing to bet that some choices/ actions I have made have cost people jobs, and money, and peace of mind...
How about schools? Teachers have a "responsibility" to be confidential about every student. Really? So if the teacher observes behaviors they are NOT supposed to be open and talk about it? Behaviors that might give insight to how an child learns or why a child behaves in a certain pattern, learn about a personal history that gives context to the student's fears and strengths... teachers should hide and smother that information? But then, if the teacher learns something that could even remotely imply dangerous activity (abuse, drug use, neglect) the teacher is legally bound to report it. We have turned our teachers into the "front line" of social policing - and the result is that teachers actively AVOID learning personal context for their students so that they are not involved in false accusations, AVOID watching too closely for fear that they may discover something they don't want to find. The current culture in "professional educators" does NOT lend support to caring, loving people who observe students closely and offer insight into how a child works. Clearly, "confidentiality" is *helping* our children!
They talk "confidentiality" at IEP meetings all the time. "Well, we can't tell you what accommodations have worked for other students, that would violate their confidentiality." "We don't want to single your student out in front of the others - we don't want to tell the other students he has Asperger's - that would violate his confidentiality." "You can't come observe in the school. You would see students besides your own and violate their confidentiality." Who in the hell are they hiding from?
They are hiding from ME! "Confidentiality" is a tool, to be sure they can keep parents unknowledgeable about other students, so parents can't compare notes, or discuss options, or know what is really possible. It is so they can negotiate from a place of power in the IEP process, bully parents into accepting less than the student needs, or keep services within the abilities of their current staff.
"Confidentiality" does NOT protect my student! It protects the school system!
And quite frankly, hiding only creates problems, not solves them! We teach kids not to hide from firemen - we want to be able to save them in an emergency. We teach kids not to run from the police - running assumes guilt. We don't want people to hide their abilities - we expect them to share them with society. We don't want people to hide their identities - it makes us suspicious.
So what exactly is it about my son that I am supposed to deny when I am blogging/ facebooking, asking questions, seeking a sense of identification and comparison for him? What am I supposed to be hiding if I am seeking information? It is his essence, his inherent qualities, that I am trying to explore, celebrate, and compare. If I am describing him, I would use Autisitic, Aspie, Blonde, Thin, Tall, Energetic, Boy... the PURPOSE of a name is to sum up all these adjectives into the one singular, unique collection that is that person! Should I tell you that he is a she with red hair, mismatched leg lengths and no teeth? NO? You don't think that matches what you've heard before?
And does it matter what name I give you for him? The name I give him is a reflection of how I see him, NOT how he sees himself. Regardless of what we call him, he will need to define Himself, he will have to decide what he wants people to think of when they hear his name, he will have to choose which adjectives and titles we settle upon him are the ones he owns and the ones he throws away. He will have to make a name for himself, no matter what I do, or you do, or anybody does. We ALL do. Teaching, modelling, that transparency and genuineness will help him self advocate. It is the best way for me to prepare him for his world.
JT has ONE responsibility: to make other people comfortable enough with him that they can support him. We all have that responsibility: to control our selves, to put forth a "person" that the rest of the world can live with. Putting forth a false person only leads to receiving the wrong support, the wrong "fit". It is NOT sustainable. Honest and thorough reflection leads to an accurate, correct "fit", to successful relationships that fulfill people and societies.
Unless, of course, I am a spy.