How one looks at a Disability, a Personal View

The latest brouhaha on some Autism sites is Greta Thunberg and her diagnosis of "high functioning Autism" or Asperber's Syndrome. To add to the controversy, Trump ridiculed Greta, obviously not showing the same respect we give his youngest son. Back to Greta--first and foremost, I do not know her. I have not seen her neurodevelopmental or psychological assessments. I do not know the adults supporting her and for what reason. So these are major caveats. She is a young person who is still developing. If I had been analyzed at 16, the conclusions would not be the same as an analysis of me at 26, 36, 46, etc.

To quote someone who wrote on Facebook--"She doesn't have the kind of Autism I see at my house." I could not say it better than that. Surely, she may have social issues, and that could be the reason why she has shunned school. Or she could be an angel or a child prodigy put on earth for us to come to our senses. I do not criticize her opinions or actions. For the most part, I agree with her.

I take umbrage with the idea that high functioning individuals truly are disabled. I am not including individuals who are blind, deaf, or physically handicapped. These people certainly are able to function at a very high level and still have a physical disability. To have a disability, such as Attention Deficit Disorder, Autism Spectrum Disorder, Dyslexia, one must be disabled. If one has completed post secondary college levels or vocational education and has landed a job as an engineer, doctor, professor, writer, artist, plumber, electrician, etc. and is living a reasonably good life, one is not genuinely disabled. One may have issues, problems, concerns, and limitations. However, there are millions in our country who are sitting at home, languishing on the streets, or scrounging out a living due to some disability; could be Autism or any other number of diseases. A disability is not an excuse for not being at the top of the heap; an authentic handicapping condition impacts life at a fundamental level.
Autism is a serious, severe brain disorder, which is now viewed as a spectrum. I do not believe the originators of this diagnostic category or researchers of this condition foresaw that highly successful individuals would be categorized with this disability. Of course, there are a few rare exceptions. But let us focus on those who need our help. Let us shine the light on them, not on the rare genius who makes all of us feel good.

Not one of us is as successful or happy as we would like to be. We all display dysfunctional behavior. We have oddities, anxieties, weird habits, and strange quirks. But we do not qualify as having a serious neurological disability.

The difference is impact. What is the impact of our psychological or learning problems on our lives? Can we overcome our weaknesses? Can professional help alleviate the impact and facilitate improvement, such as the disorder does not interfere with our living? Is most of our life proceeding smoothly, positively, and productively? If the answer is "yes", one has overcome one's disability. One may be vulnerable for a recurrence and a reapplication of the diagnostic code.

The DSM--5 is the current source for diagnostic criteria of Autism Spectrum Disorder. This section most clearly decribes the impact of the disorder; here is the decription at its mildest level.

"Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful."

"Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independent living.

"Supports", "decreased interest in social interaction", "problems making friends", "difficulty switching between activities"; "hamper independent living". These are the watchwords that distinguish a disabilty from an "issue", etc. 

In conclusion, our research, funds, educational and vocational programs/opportunities should be for the most needy, not for those with issues most easily solved. We are attempting to help people not look for poster children or sound bites.

Another Shooting, Another Week with a Thoughtless Leader

      I feel angry and sad that we have a President who does not care a whit about anything of value, and there are so many kids who shoot up their schools. We only hear about the actual shootings. Certainly, there are potential events that are averted. Several years back, the President's wife wore a jacket that said "I don't care". She claimed it was a brand logo or design. I think this sentiment is where my thoughts come together--caring for others, seeing what is front of us.
     How can "we" not notice these disturbed people? There must be someone who observed something off-kilter with the youth, who killed his peers and himself, but was afraid or just did not think to delve further. I think there is a certain prototype of individual that engages in these shootings, acts of violence and cowardice. I hope the Psychologists are studying this awful phenomenon. The perpetrators are actually not mentally ill or sick with a major mental illness, according to experts. Rather, very unhealthy emotionally bereft people who have access to firearms. Often, there is a history of gun use in the immediate environment. For example, this kid's father was an avid,"big game" hunter and abusive to his wife. 
     Obviously, we are missing something as a society. Often, the youngsters, mostly boys, are very smart and quiet. These kids do not receive much attention in school. Probably, their parent(s), teachers, and coaches are overlooking aberrant behavior, since the child is not causing trouble. Our society is obsessed with "bright" kids, so smart and depressed, disturbed children go unnoticed. Neighbors, friends, and teachers are afraid to communicate concern to parents for various reasons--legal, discomfort, fearful of reaction from parents, reluctance to get involved. 
     This teenager was a model student/youth, so that is not where the problem lies in this case. Violent computer and video games and movies seem to contribute to gun violence, but research does not support this theory. Spending time alone, staring at a computer screen for hours, must be harmful for a developing brain.
      "When people assail me. They shall stumble and fall." (Psalm 27)
     Perhaps, we are living in a time where God, a higher power, or Life is drawing our focus to evil, in the form of individuals who facilitate and committ senseless acts of violence. Maybe, we have been lollygagging and skipping along, consuming new devices, wearing new styles, traveling, eating/drinking, reading and not paying heed to what is happening in our own backyards. We are so busy praising children that we forget that admonishing them may be more important. Everyone on their phones, including babies, leads to a clueless society. So does worrying about the consequences of hurting people's feelings and saying something unpopular. We have a lawless leader, fearful legislators, indulgent parents, and celebrities committing unforgivable acts, for which they receive minimal punishment.
     Your friends may be nice to you. But how do you and they behave on the road, in a line, at a store, at the movies, in a park? Adults with their heads down and kids with hoods up and earphones in cannot communicate or give eye contact. Let us look up and tune in to the sounds around us, as we walk and drive. I notice a great deal. I see flowers. I pick up trash, look at abandoned packages, and watch those around me--I have always been an observer.
     Family and community connections and polite manners are vital for a caring society. Young people need to learn to respect their elders. Elders cannot be constantly complaining and demanding that life goes their way. Times change; nothing is or will be like it was. Kids are loud and messy and disruptive to peace and quiet. Teenagers move in groups, like packs of stray dogs. We forget that we caused a ruckus in our time. I see parents carrying their children's backpacks. What the hell is that? Young help old, not the other way around. It is nature and common sense. I always make my daughter carry the heavier loads. She is stronger.
     "God will hide me in God's shelter in the day of trouble; God will conceal me under the cover of God's tent' God will set me high on a rock." (Psalm 27)
     I pray that we return to a time when we no longer need police officers to guard us at schools and at religious, sports, political, transportation, and government venues. I hope for a time when I no longer look for escape routes or see grand pianos as something to hide under when I am in the choir loft. I hope for the day when we feel at least a bit safer and secure.
     

50 year High School Reunion

     "And you are? Ah, yes, I  remember you." Or "Oh, sorry, we were in such a large class, about 700."  These were the salutations ringing through the spaces of the Lake Merced Country Club, outside of San Francisco, last Saturday evening. My fellow classmates were friendly and pleased to be among the healthy and living. We were soberly shocked about the deceased peers and eerily wondered who would be there in 10 years. As a whole, the 60 something alumni looked trim and healthy, very few obese people. The women were looking more coiffed than the men. The classmates who are Hispanic, Black, Asian, and other darker skin mixtures definitely aged the most beautifully.Where had the intervening years gone? The day before the party, some of us--former students--took a tour of our school, an interesting and ice-breaking experience. What a joy to see the young, inquisitive, busy youngsters, staying "after school" on a Friday, unheard of in our day! The kids were actually very friendly.
     The sweetest bonds were from elementary school. Where did the intervening years go? Here I was, "Karen Levi", different but the same. I was touched by those who remembered me, being of the insecure type. More people recalled me or said they did than I ever expected; they seemed authentic, and I like to see the positive in people. Granted, I was in school with some of these individuals for about 10 years. (I attended K and 1st grade in another area of San Francisco.) My high school is an academic school, open to students from all over the city, so it did not offer non-academic courses, such as shop and home economics. However, it happened to be located not far from my elementary and junior high schools.
     Seeing old acquaintences and friends reminded me that I have always been who I am. To be recognized was a validation of who I was then and now. The reunion was a coming-home in the truest sense, a return to the me of 17 (almost 18) who became the me of 68.We changed voluntarily and naturally, but we were subjected to a great deal of criticism, judgement,  and comment. Added to that was the self analysis that occured, immense in our maturational years, when the  emphasis on "self improvement" was so prevalent. Of course, I am a better version of the original Karen, but I have come full-circle back to myself, minus all of the self trash talk. My friends and acquaintences in school were not all that different from my present social circle. Now I am educated, both academically, professionally, and emotionally, not purely influenced by my parents.
     The journey of traveling from my 17-18 year old me to 68 year old Karen was a winding road, complete with switchbacks, near disasters over cliffs, smooth riding, and driving through a fog; at times, I laughed, and then I cried. The coastal highway of the past 50 years has been a noteworthy trip. Hopefully, I am moving to the wider, straighter slightly inland highway, not boring but a bit easier to navigate. I am smiling about the reunion.

Making Peace?

     Battle, War, Combat, Fight--common terms used to describe a response to illness. This metaphor, as in the "War On Cancer," originated in the 1970's. However, the reader will be surprised to know that the use of military terminology hearkens back to the 17th century. The image of a soldier combating an illness with weapons is typically invoked by professionals and lay persons. I read blogs of people who have cancer, and the war vocabulary is a part of the patient's lexicon.
    A few years ago, I thought in the same terms--be a warrior, "kill" the cancer cells, scads of "knights" on horseback attack the deviant malignancy with lances. A violent battle will be waged against the spread of dangerous cells; by all means, everything possible should be attempted to bring a person back to health, even a 91 year old. Get rid of the nasty tissue gone haywire. But, and here is the but.
     Waging war, as a metaphor, is also utilized to face mental illness and drug addiction, as in the "War on Drugs". "We will do all we can to fight this"; "Why doesn't he fight harder?"; and "Why does she give in?" are phrases people use.
     Americans seem to have difficulty accepting what we cannot control. We do not have dominion over nature. A sick body is a sick body; a sick brain is a sick brain. I love healing and health. But nature is independent of our minds.
     I am powerless to conquer mental illness. Certainly, there are drugs and psychotherapy which eliminate or decrease symptoms, but the illness remains. Alcoholism is an excellent case in point. I am impotent to change my son's addiction to alcohol.
     Many individuals I have met in support groups and workshops view me as complacent towards my son's addiction. Others have criticized me for "not trying everything in my power", not understanding that my son has to desire change before it occurs. (Though, of course, "others" are not privy to what I have attempted.) Evidently, I do not "fight hard" enough.Whatever that means exactly?
     Common knowledge still purports that alcoholics are lazy. I admit to thinking the same on occasion. If my son drinks again, he is a loser, not a fighter. Truthfully, I do not know how it feels to be a substance abuser. But how can an alcoholic be a failure if his/her brain metabolizes alcohol differently?
     How many obituaries read, "He fought the disease valiantly" and lost? The deceased did not lose. He became ill. My son did not lose. He became ill. I did not lose. I am helpless to change another's brain. Helpless sounds pathetic. I am far from pathetic. Each day, I strive to live life with joy, meaning and empathy. My son probably feels terrible when he drinks. He grew up with sensitive, educated parents who gave him all the advantages and assistance we could offer. Various treatment modalities were attempted with limited success.
     Doctors are ultimately powerless in the face of cancer, mental illness, and addiction. I think physicians have difficulty experiencing the effects of cancer and treatment on their patients.  When a doctor has eliminated all the remedies, vanquished in war, he/she tends to leave the scene of the battle. One rarely sees a doctor at the bedside when a patient is dying.
     Cancer is one of our curses, like mental illness. People formerly died of common infections, diarrhea, heart disease. We have the ability to save most people from these illnesses, but we will never completely combat nature. This is so clear, as a hurricane batters an archipelago in the Caribbean.
     We do not respect nature. Control over numerous aspects of our environment has been gained. And, one day, humans may be able to eradicate cancer and addiction. But we will never overcome the natural world completely.
     Acceptance is difficult. I do not sit in a lotus position, repeating the mantra, "Illness come to me, I accept thee." I am frightened of cancer and other debilitating diseases. I seek to live by a basic tenet of Alcoholics Anonymous--turn an illness over to a higher power. But, I am not Mother Theresa. Witnessing a formerly healthy person struck down by a mental or physical illness is agonizing. I turn to anger, instead of sadness and acceptance. Only in the very old, am I able to be at peace with disease.
     I am working diligently to live with problems and just be; to not feel required to act, especially when all therapies have been exhausted or refused. My aim is to tolerate negative outcomes or those I did not choose or imagine.
     Living with repugnant results is antithetical to our belief that we orchestrate endings and beginnings. People ask, "How are you?" and I am supposed to respond, "fine". The next question is "How are your children?" How does one answer? "I am accepting life as it comes." Maybe, I should use that rejoinder. I believe most people want to hear--"So and so got a promotion in a start-up in California." And "So and so is pregnant with her second child." Some individuals turn their heads or walk away if one answers negatively, a response which is like putting your hands over your ears and yelling, "I can't hear you!".

Amy Tan and me

   
     Amy Tan and I have a great deal in common; though she is talented, and I just work hard. Not to say, she does not persevere. We were both sensitive girls brought up in the 1950's and 1960's, in the San Francisco Bay Area, by immigrant parents. My parents were German Jewish refugees from Nazi Germany. Her mother and father escaped Communist China.
     Our mothers were damaged by trauma, too proud to admit their issues, revealing their past lives in spurts and bursts later in life. Coincidentally, they earned licensure in medical fields, to earn extra money. Our fathers were ambitious but missed the mark in becoming "well known" in a competitive environment. In their quest for success, they encountered privileged, native English speakers, with connections. Amy Tan's father strove as a pastor, engineer, and inventor, my father in business and politics. Amy Tan's parents were unabashed in their exalted hopes for their children's futures; my parents concealed their dreams with, "do the best you can". I continually felt that my efforts were short of the highest levels.
     In her book, Where The Past Begins, Amy Tan expressed these thoughts eloquently. We, like other children of immigrants, were affected by the rip tide of regrets, fear, and anger that permeated our households, equally sensitive and attuned to nuances in our parents' mood swings. Tragically, Amy Tan's older brother and father died within six months. Thankfully, I did not suffer this tragedy. However, like her, I lived in fear of a brain tumor, other ailments, and an early death. Amy Tan is a well-known author; however, she worked in the field of language disabilities for a short period of time. I was a Speech-Language Pathologist for 36 years. Our lives have been dominated by words,sentences, and a love of language.
     November 8, 2016 was a watershed moment for many Americans. Amy Tan wrote about the terrible days when we realized that the worst of our country would be laid bare--zenophobia, racism, sexism, isolationism, extreme materialism, ignorance. We came face-to-face with the hidden despot; the autocrat lurking in the shadows; the man who would voice the worst sentiments of fearful citizens. Amy Tan's family was familiar with discrimination, and my family knew firsthand what damage a  dictator could wreak.  We wondered who are fathers would have voted for. I knew without a doubt that my father--a loyal, staunch Democrat-- would have voted for Hillary Clinton. Ms. Tan was not sure, since her father was an Evangelical Christian. Like Amy Tan, I have been deeply upset about the deceit and disregard for human life that permeates the Executive Branch of the government.
     I rely on memory and imagination in my life, reaching back to past events to interpret the present. Imagination has been a safe place for retreat and calm. My father regaled me with tales of imaginary friends, who I do not remember at all. I must have been quite young. A rich fantasy life enables me in my writing and in daily life. My daughter and I enjoy spinning yarns for fun. In her recent book, Amy Tan describes at length the role of memory and imagination in her writing.

Susan Levin

In memory of Susan Levin who died of cancer, too young and too curious to suffer this deadly disease. She was a supporter of my writing, and for that I am forever grateful. I only met Susan after she was diminished in illness, though not in spirit. She joined my synagogue after her husband died, perhaps to assert herself a bit. Susan joined the choir too. She used a walker and quietly sat down with the sopranos. Susan knew the liturgy very well, partly due to being married to a cantor. I do not know if she grew up in a devout home. As I wrote, I knew her for a very short time. Beneath, all of the layers of clothing--was she always cold or was she dressed modestly--the beret, the walker, and the pale face of a cancer victim was a feisty, fiery woman, not afraid to express herself. All I know is that cancer is taking too many lives in their golden years, too often. May the light shine brightly for Susan.

Death in Three Parts--my birthday card

Death in three parts. My mother is dying, whether she opts for "treatment" or not, her body's cells are deteriorating rapidly. She is almost 92, so this is not a tragic, unthinkable death. Like a hardy plant succumbing or a mighty tree turning grey, with bare branches the year long, all should be so lucky to know a life well-lived. A life of 90+ years is a gift, a matter of luck and moderate living, nothing too extreme. If we could view this advanced stage of life--including death-- with optimism, that would be wonderful.
Then, there is the other death--a drug overdose of a young man at 28 years old. A sickness--drug addiction--turned his brain into a poison-seeking machine programmed for destruction. Dead, lying alone in a dingy room somewhere, in the darkness forever. Herein lies the true tragedy. Yet nature has worked in its mysterious manner. This brain was only to last less than thirty years.
My son is also dying. He may not know it, but I do. Another victim of deadly addiction, alcohol in his case, no less able to control the progression of the disease than my mother is able to stop the cancer cells.Why must parents and siblings watch this painful demise? Why must we pick up the random pieces of a life not lived? Why must we bury the young while we slowly die of the malignancy of torment, pain, and disbelief?