If You Aren't Going to Help Me, Then Get Out of My Way

     I was at a workshop recently where leaders of some committees were speaking. One such committee had the title "special needs" in it. The man was speaking about an experience that he had had while volunteering at a day program that warehouses survivors of traumatic brain injury five days a week for five or more hours a day. 

     The earnest volunteer found out that a woman who refused to read anything in a group setting-- she would throw the book across the room whenever asked to read-- actually could read words if he pointed to them individually. "They run together," she shrugged when carefully questioned, "so I tell people I can't read."

     The volunteer did not know that eighty percent of t.b.i. survivors have visual perception/ ocular-motor dysfunction/ visual processing problems. "The eyes are an out-cropping of the brain," I told him. "Large print helps because we need more 'white space' between the words." I could tell this was new information to him. Why oh why didn't the day program address this problem among its' customers? We are fortunate to have some competent physicians in the area who are well-versed in complications after a brain injury, including several eye docs.

     The book-throwing woman did not have to suffer the humiliation of being asked to read over and over again in spite of her protests. The company who ran the day program certainly could have fostered a visual eval for the woman. The visual problems that we have are not related to visual acuity. [Visual acuity is what is measured by the standard vision exams. Think Snellen eye charts and 20/20]. 

     Brain injury professionals in various disciplines need to communicate with each other for the good of their patients and customers. I expect competent treatment when I avail myself of any medical or other professional services. That an agency which conducts any sort of day programming for brain injury survivors would not educate its workers and volunteers about a very common complication for us is inexcusable. Period.

     Traumatic brain injury is frustrating enough, especially early on after diagnosis. To have professionals not know how to address a basic complication really sucks.



     Here are a few random stats and factoids about complications of traumatic brain injuries:

80% of survivors have visual perception/ocular-motor dysfunction/visual processing problems.
     A thorough eye exam by a t.b.i.-competent professional is a must.
     Large print may help [because we need more 'white space' in between words].
     E-readers with anti-glare screens may help.
     Wearing a visor may help.

20% of survivors have hearing deficits due to their t.b.i.

50% of survivors develop sleep apneas, either due to the t.b.i. itself or due to obesity which may come from inability or lack of motivation to exercise. Ditto diabetes.

Some percentage of survivors develop clinical depression due to damage in the left frontal-temporal lobe. If there was pre-morbid depression, symptoms may accelerate because survivors need larger doses of their psych drugs than before.

Incidences of addictions to drugs including but not limited to alcoholism increase after a traumatic brain injury [in comparison to the general population].

Survivors who were clean before their traumatic brain injury run an increased risk of relapse [in comparison to relapse among non-t.b.i.ers].

and finally:
We do have well-developed senses of humor. We have to in order to deal with some of the less than competent "professionals" that we are exposed to.



     The idea that "Traumatic brain injury survivors don't have a sense of humor" is a myth. With the lowering of our inhibitions comes the ability to laugh at what we truly find to be humorous and not to laugh when we don't think it's humorous. Those professionals who insist that we no longer "get" jokes usually are the joke.



sapphoq healing t.b.i. says: The onset of brain damage frees us from fulfilling societal expectations. This upsets some professionals. It leaves them to spin their wheels because we "don't co-operate" or refuse to conform to the status quo. When coming out of a-motivational syndrome into a level of determination that was missing in early t.bi. survivorship, we deserve to experience for ourselves the pushing against any limits imposed upon us by professionals. Sometimes, even well-meaning professionals believe in the fiction that surrounds life after a t.b.i. Sometimes, professionals forget that we are the experts on our own lives. If that hurts a professional's false ego, oh well. 

What Duck Dynasty Teaches Me

     I am fortunate to have a variety of mentors who have helped me to learn how to continue living and having a life after my brain damage. I appreciate people who have believed in me enough to teach me about responsibility and dreams at a time when things were pretty dark. Traumatic brain injury changed my life. Although my life is different now, I still very much have a life.

     Through my interaction with conservatives on Twitter (tm), I am reminded that in spite of my present neurological difficulties I can keep striving. I do not have to be a lump in a chair sleeping my life away to the drone of teevee talk shows. I can be a contributing self-supporting member of society. There is no self-esteem to be found in hand-outs. No one owes me a living. 

     Yes, I am an atheist. I have been a non-theist for many years. Even so, I can certainly learn from those who have differing religious viewpoints. I have found that in spite of my non-beliefs, I fit in better with those of a libertarian bent than I would have ever suspected. And I discovered Duck Dynasty.

     The Robertson family is from around Monroe, Louisiana. They are proud red-necks. They make me laugh. They remind me of folks I used to know when I was living in Baton Rouge. They are practical and fun people. At the end of the show, they pray. They get to do that. I don't care. The right to self-expression is not limited to "those who agree with me totally on everything." I stand with Phil Robertson. He expressed his Christian beliefs in an interview with a magazine and the world blew up. He has an absolute right to do so. As a heterosexual man, he does not have to understand same-gender love and relationships. As a Christian man, he does not have to endorse something that he believes is wrong. No one has to.

     Here are some of the things that I've learned through watching Duck Dynasty:

Being different is okay.
     
Doing stuff differently than other people do it is okay.

Building stuff is fun, even if it comes out weird.

I can express myself without cursing.

Family is important.

sapphoq healing brain damage

Stuff Your Use of the Phrase "Special Needs"

     I don't like it. Not a bit. What is so "special" about the "needs" of disabled people? Of communities of disabled people? Yes, I have a traumatic brain injury. Yes, that means I have brain damage. But my needs are the same needs that everyone else has.

     It all relates to F.-S.P.I.E.S.

Financial
Social
Physical
Intellectual
Emotional
Spiritual

     Financial-- We all need money or something to exchange for goods and services.

     Social-- We all need acquaintances, friendly folks, and friends. [Even if it is one friend].

     Physical-- We all need clothing, shelter, nutrition. We all need to navigate our environment. And we all need exercise.

     Intellectual-- We all need intellectual stimulation.

     Emotional-- We all need connection.

     Spiritual-- We all need awe or beauty.

     All of you temporarily abled people can take the phrase "special needs" and stuff it along with the ideas that we ought to "Fight Against Autism," make clucking noises over the "stigma of mental illness," and declare all kinds of conditions to be "a brain disease."

     Screw that. Screw all of it. 

     We, the disabled, have the right to name ourselves as we see fit. You, the non-disabled, do not have the right to invent fancy little demeaning labels. Take your words and your puzzle pieces and your nonsense away. We reject your control over our lives. 

     ~ sapphoq healing complications from brain damage