Tuesday November 8th’s 2016 political upset was a wake-up call to all of us in the chronic illness community that we have our work cut out for us when it comes to our quest for respect, equal representation, and full inclusion (which includes having our medical needs met in a timely manner).
The worst of it is not just the opinions espoused by Donald Trump, but that these same bigotted opinions appear with such frequency among average citizens in modern society, and that they can and do drive the making of public policy; AKA…the rules that govern our real lives!
Despite that many are uncomfortable discussing and even thinking about politics, the reality is that where the rubber meets the road policy gets made with or without our input.
The challenge in the face of such a punishing blow as we saw earlier this week is to stay engaged and not give up the good fight for what we know is right. Better that policy be created with our input than without, and under our watchful eye than in the secrecy of smoky back rooms.
Ari Ne’amen, the President of Autistic Self-advocacy Network, calls the election of Donald Trump “a disaster” and predicts that if Trump actually follows through with the things he has stated he plans to do once in office the risk for people with disabilities is serious and very real.
We already know that one of Donald Trump’s big goals is to “repeal Obama-care” the Affordable Care Act. Along with this is the Medicaid expansion for people whose income is too low to qualify for the Affordable Care Act Insurance Market, large numbers of working poor who otherwise are cheated out of health insurance benefits by greedy big corporations who employ them often at starvation wages, cut their hours, and pull other ploys to avoid providing them any long-term job stability and financial security just to pay the top brass more. He has even stated that he’d like to do away with a minimum wage altogether! (Clearly he’s not looking out for the American worker’s best interest, but instead the interests of big corporations).
We already know that Donald Trump is unsympathetic/unempathetic to the plights of undocumented immigrants who have often had to flee deadly drug cartels and other terrorists on an emergency basis to come to the US for safe refuge.
His comments regarding Latinos are especially heinous referring to them in such derrogatory terms as killers and rapists , casting aspersions upon the Mexican Government as if to imply that infiltrating our country with unsavory characters were their intent!
He kicked a New York Times reporter of Latino descent out of an Iowa news conference and had him forcibly removed, and he has made derrogatory remarks about former candidate Jeb Bush implying that he was unfairly biased for Spanish speaking people because his wife was Latino. Most distubing of all anti-Latino comments was his response when confronted with a situation in which a Hispanic man was beaten in his own home by Trump supporters; stating that his supporters were “passionate”.
No, I’m sorry to break it to His Highness, but THAT’s not merely “passionate”. THAT is a HATE CRIME! “Passionate” is peaceful protest, or a civil debate of the issues.
His blithe response and gross minimization regarding this act of discrimination, hatred and violence is dangerous in that it has the effect of normalizing something that should never be socially acceptable in a civil society! It tells others out there who do not want to control their anger and who believe the rules and laws don’t apply to them that violence is OK as long as you are doing it in the name of a belief (however instrinsically immoral it may be). The now President Elect almost seemed to gloat over the fact that such violence could be passively incited in his name.
We must ask ourselves; if he’d turn his head to this sort of hate crime how many other civil rights issues will he turn his head to as President?
And it’s not only immigrants he disrespects. It’s women, too. I think most of us have seen at least a few off-color comments he’s made on the news or on Twitter, coverage of his intention to reduce a woman’s right to free choice and other equal rights issues for women such as opposing equal pay in the workplace, but you may not have been aware of this very graphic video which caught blatently sexist and denigrating comments he made about/against women here .
Notice here that Trump dismisses the severity of his salacious remarks and fails to take responsability for his clearly treating women as though they were objects to be conquered for his own narcissistic gratification. He only apologizes that anyone “was offended,” not that he did it. Sound familiar??? It’s the same sort of non-apology Emory Healthcare issued in their letters which stated “sorry you aren’t satisfied.”
And speaking of big corporations; Trump has on numerous occasions stated his intention if elected to roll back regulation on big corporations, so it is likely that what happened to me is not the last time this atrocity will happen to an innocent patient, and the offending healthcare corporations will get away with it. If anything our country is in need of more regulation of big corporations; not less!
They’re already running rough-shod over us individuals and the fox is charged with guarding the henhouse leaving big gaps in justice for those with little power in our society. Funding has already been cut to state and local programs such as Legal Aid, and to federal programs charged with going to bat for people who find themselves discriminated against and stuck out in the cold.
As I have outlined in earlier posts; people with Autism/Aspergers and other little-known and poorly understood conditions that frankly doctors and healthcare systems would rather pretend don’t exist than to treat receive short shrift when it comes to services. They are considered costly and time-intensive and therefore a bother to such corporations, so there is much pressure to down-grade the level of care to individuals with such conditions, and if that doesn’t fly they are dumped summarily with very little public outcry resulting and next to no real advocate.
Considering that the numbers of people with many of these (as corporate healthcare sees them) “nuisance” conditions are rapidly becoming the majority and (it goes with out saying) these are a formidable voting block. This is what we must impress upon the masses and upon Congress in our efforts to educate and consciousness-raise.
While our kind may still be considered less crucial/less important and our views less influential in forming our country’s priorities, we are a rapidly growing segment of the population and one day soon we will be a demographic that politicians wish to court.
Trump seems to have a penchant for insulting people with disabilities employed by the media. I guess deep down (well not so deep really, LOL) he doesn’t believe that people with disabilities can be strong contributing professionals of news agencies.
During an NBC News interview he slammed a columnist, Charles Krauthammer, who is paralyzed from the waist down specifically using his disability as the butt of his mean joke; “Then I get called by a guy that can’t buy a pair of pants, I get called names? Give me a break.” It wasn’t enough for him to insult the man’s stance on the war in Iraq and other topics, and to call him “underrated,” but to attack his having a disability and his needing help for that disability is beyond the pale.
If anyone has any doubt that a Trump Presidency is harmful to the interests of the ill and disabled you have only to watch this clip in which he mocks in one of his speeches the spasticity in a reporter’s hands, Serge Kovaleski who has arthrogryposis, a joint condition.
He later goes on to accuse him of “grandstanding about his disability.” Further, he questions “his level of intelligence”, painting him as a nobody that is too unimportant for Trump to remember. Nice attempt at gaslighting, Trump, but a big fail; the sarcastic impression shown in the above video speaks for itself.
Pretty appalling, huh! You might expect this kind of juvenile banter from a prepubescent hamming it up and trying to garner some street cred with his friends/peers by picking on those he views as easy targets, but not from the (now) leader of the free world (soon to be alot less free than before if we don’t stay on task in standing our collective ground steeled against the inevitable attempts to cut corners on those he deems not viable enough).
Trump’s assault on disabled people isn’t even limited to his liberal detractors.
Even veterans with disabilities have been subjects of his particular type of abuse, including John McCain about whom he openly stated that he didn’t understand why people considered him a war hero after being captured and held for years in a prisoner-of-war camp, forced to endure horrendous and permanently crippling torture. Trump’s audacious comment that he “prefers soldiers who were not captured” is another telling remark of honking disrespect and lack of empathy which gives a clear indication of his values, and motivations.
It strongly hints at his predatory and orwellian view of the haves versus the have-nots; the viewing of the underdog as somehow less viable, therefore less deserving than his more advantaged counterpart. His singling out of various groups to be badly regarded thus badly treated is another version of the concept of Untermenschen; a term coined in Nazi Germany during WW II; (translated: Under Man, or sub-human) made new again.
Michelle Obama stated it very accurately in a speech made earlier illustrating why Donald Trump is wrong for America.
She says; “Maybe it’s easy for him to mock people with disabilities because he’s unable to see their strength and their contributions.”
That, my people, is the root of discrimination; the inability to see a certain demographic’s value and the inability to view them as bringing something important to the table.
This man clearly lacks the maturity and seasoned professionalism (not to mention the experience) required for the job of President of the United States of America, and much more than merely annoying, his rhetoric is dangerous to those who due to medical conditions require accommodations in order to have as much quality-of-life as possible. In politics, as in life, one might be able to con (or buy) one’s way into a job, but doing the job day in and day out is a whole other kettle of fish!
It’s appalling that anyone would want somebody like this to be President, and just as appalling to hear some of the excuses being generated for his prejudices and blatant disrespect for those who are less advantaged than he. (Note that he is constantly telling us how wealthy he is. And how does that at all qualify him to run the country which includes mostly people who are not wealthy and whose lives in no way resemble his?)
Maybe in time those who voted for him will see that this was a big mistake and that in the end this is not a man who represents their values, and maybe they will move for a reversal. (I hear that Michael Moore predicts he won’t last the 4 years). Only time will tell, but those of us who’ve known this all along must continue to shine a light on the humanity that is lacking and the restoration of which is so badly needed, and keep working to improve things for people with disabilities/the chronically ill.
For those who are interested in an update on me; I will get one up soon. For a number of reasons I have found it hard to write over the past month. I had a spoon left tonight and just felt that this topic was screaming to be put down on paper given the timeliness of the election, as its ramifications affects all of us.
Aspergers and other forms of Autism were once thought to disappear once a child reached adulthood, but now experts are discovering that’s not so. Many people reaching the age of majority who were diagnosed as children who may have had services while growing up and an increasing number of undiagnosed Autistics have now “aged out” of the social service system and find themselves at a loss as to how to fully function in society.
While Autism exists on a spectrum with each individual presenting differently in both strengths and defecits, there are certain traits that people with this condition generally have in common;
* Difficulty in reading social cues from others in their environment.
* Difficulty in communicating their thoughts, feelings, and intentions to others in a form others can understand.
* Trouble in processing and making sense of the world around them.
* To some degree feeling uncomfortable making eye contact.
* May have sensory issues, and some don’t like being touched, certain tastes, textures, sounds, and/or smells.
* Literal thinking and impairment in one’s ability to decipher sarcasm, lying, disingenuousness, deception, trickery, two-faced behavior, and in some instances out-and-out meanness.
* Tend to take people at face value.
* A strong moral sense of honesty, right and wrong, and justice.
* May come across as odd or accentric.
* May have trouble regulating emotions (either appears emotionless as in showing lack of affect in voice or facial expression, and/or the opposite may present itself in that the person may get very upset at times).
* May have inflexibility in changing one’s routine.
*May have very specific and sometimes narrow interests that are focused on very intently, and difficulty “switching gears” to transition from doing those activities to doing other activities.
* May speak long-windedly and circuitously especially about those topics that interest him/her, often unaware of when others lose interest.
* Difficulty conceptualizing opinions widely divergent from their own (once believed to be a lack of empathy, but now recognized as difficulty with a particular type of abstract thinking).
*Repetitive behaviors; known as “stimming”(some of which have the function of self-soothing).
*Co-morbid conditions can include ADD/ADHD, Anxiety and/or Depression (usually situational), sometimes Obsessive-Compulsive Disorder, and more recently a variety of medical conditions are recognized as being associated with Autism such as GI conditions, Dysautonomia, allergies, Multiple Chemical Sensitivity, Mast Cell Activation Disorder, Ehler’s Danlos Syndrome, and other Autoimmune Diseases.
*Often these individuals are vulnerable to bullying by not-so-nice people who pick up on the fact that something is different about them and take advantage of their “blind spots.” This does not only happen to children in school settings, but can happen to adults also in the workplace, the community at large, and even in healthcare settings.
There are a growing number of cases documented of abuse and/or neglect in ERs and in other hospital settings. Staff often lack the training and patience necessary to accommodate such populations and therefore handle the situation very badly.
(Note that these symptoms in people with Autism often become worse when they are hungry, thirsty, or have medical issues that are not addressed in a timely manner. This is why it is especially important to pay attention to these clues and take them seriously. They are not a sign of mental illness nor of the individulal just being “difficult” nor are they a defect of character, but indicate that something is legitimately wrong that needs addressed ASAP).
It was once believed by experts that boys were affected at a 4:1 ratio to girls, though some believe the ratio is actually 16:1, more recent data suggests that the accurate statistic is likely 2:1 (male to female) or may be even more evenly matched between the genders.
Dr. Judith Gould of the Lorna Wing Center and Center for Social and Communication Disorders believes that current statistics about the prevalence of girls with Aspergers are under-representative citing a 2.5:1 ratio.
Tania Marshall did her docturate in Asperger’s in females, has published a number of books on the subject, and is currently practicing in this sub-specialty. She has found that it’s quite common for girls to fly under the radar until at least secondary school when communication and interaction among girls becomes more emotionally-based and a social hierarchy begins to develop. Females are better at concealing it and emulating those behaviors that are socially acceptable (referred to as masking).
For those adult women on the spectrum who are now in their 40s and 50s virtually no diagnosis of girls existed in the 1960s and 1970s when females of this age were children, so many women are just now obtaining official diagnosis and having to make up for a lifetime of struggle, misunderstanding, and riducule from those who mistake their condition for something else.
Back in those days nobody believed that girls could have Autism, so other euphemisms were used in lieu of official diagnosis when they were taken to neurologists and/or neuropsych tested. (I have miraculously managed to keep a report I had when I was tested at age 5).
This is in effect what happened to me. Neurologists have been telling me for years between the lines with statements such as “Your brain is wired differently” and “Your brain’s not hooked up quite right” and when I asked what I could do about it they were at a complete loss as to what to tell me.
In those days there really were no effective interventions or coping mechanisms. With all the stigma attatched and ignorant people out there confusing Autism with mental retardation, I really didn’t want to “go there” having been given the message that this was a family secret that shouldn’t be explored any further and was better left alone. I pushed it to the back of my mind telling myself it must not be true because all the media images of Autistic people were of children wildly out of control and non-verbal 24/7, 365 days of the year. That was not what I was like, but I had some of those problems at one time or another under certain circumstances and alot of the other quirks I had and still have I didn’t know were actually indicative of it.
When things went South at school due to my inability to focus my parents just switched me to a different school to avoid the inevitable questions that would ensue.
Throughout my educational years I was luckier than most in that I didn’t run into much bullying except for at a new private school in 5th and 6th grade in which the girls were especially snooty.
Then in high school I just tried to remain as invisible as I could and other than appearing a bit shy, nerdy, and separate, nobody really suspected nor bothered me.
I really thought this was something I would take to my grave as I figured things couldn’t get any worse with my just going on with my life and I was used to coping the best I could. It worked fairly well for awhile and I managed to “pass” except for a period mostly in my late teens and 20s when it was mistaken for other problems for which neither therapy nor medication did much good.
Been there, done that, so thanks but no thanks in case anybody’s thinking of suggesting that, LOL. Good old Dr. H. was and he couldn’t have been more off-target. I received some highly disorganized medical records in the mail at the end of last week which included doctor’s notes.
He and Dr. V’s Nurse Practitioner both floored me with their outlandish interpretation of what was going on with me medically; cynical verbiage that I won’t even dignify here because it is so judgmental and unkind that it’s unbefitting anyone who calls themselves a”medical professional.”
Dr. V’s first entry was pretty bad too, but she seemed as best as I can tell to reverse her opinion once more data became available about my Dysautonomia and I had a chance to disclose to her about the AS. (She did officially diagnose my Dysautonomia after our last visit on June 3rd, by the way, so that’s progress).
I’m pretty sure she’d just automatically gone into the first visit with a bias from what The Dark Man had charted. Even though she’d changed her mind later, it really scares me how easily influenced these doctors are to think the worst of a patient.
It appears that Dr. T steered clear of the pile-on and kept her notes constructive; good woman! ♥
These other people were in actuality seeing symptoms of my Aspergers and charting tidbits about my little quirks here and there and interpreting and/or knowingly misconstruing those traits as something almost willful on my part, poking and prodding at it as one would bat at a pinata!
Now I know why they were treating me like some sort of criminal or dangerous individual to be feared and loathed.
Such is prejudice in its ugliest of forms. And now it all makes sense why the spin they put on it is so ego-dystonic to me, because not only were they proposing something I don’t have in me, but it’s the very antithesisof who I am.
It is they who are dishonest and have duped me into believing they were actually trying to help me, smiling and pretending to like me and creating this ruse of positive relationship that I was unable to see through because of my Aspergers!
I find myself now unable to trust another doctor and I don’t know if I will ever be able to, at least not for a long time, because how can I trust when people are being genuine when they can so easily lie to me with a straight face? How can I know that they won’t write these terrible things again that are so untrue and unfair about me?
When I became really ill with the most recent illnesses, the protracted suffering and stress due to the institutional bullying, slow-down, and stoppage of care that I was subjected to over the past year (especially the past 7 months) caused my AS to become much more obvious.
I am now at a stage in which I don’t think I can put the Genie back in the bottle. Now there is one more problem that I need to do something about and find services for soon. Try finding services for a 55 year old adult woman in Georgia on Medicare. It’s not easy, and in fact nearly impossible.
Because of what’s happened at Emory it is no longer stable and manageable and I’m pretty sure this destabilization is permanent. People have no idea what I’m dealing with at home.
Now that I’ve decided to come out publicly I am trying to embrace it as best I can and use the positive aspects of it with which to cope. Although I didn’t want to open up this can of worms initially I am trying now to make lemonade from these lemons and educate the public so that this won’t happen to others who have to go to the doctor for some medical problem and risk falling victim to such atrocity. Maybe others can learn from my process and together we can make the world a safer place.
The Cambridge research published in this esteemed neurological journalused MRI (Magnetic Resonance Imaging) to compare males with and without Autism, and females with and without Autism.
What they discovered is that overall, males had greater tissue volume, but that females’ brains with Autism more closely approximated the male brain than did Neurotypical females (those without Autism).
However, males with and without Autism did not show structural differences from one another.
A growing number of experts feel that testing remains behind the times, having been devised to detect Autism in males and that this may account for the under-diagnosis of females on the spectrum.
Many females present with symptoms often mistaken for mental health conditions such as eating disorders, drug abuse, etc…
Women with this brain orientation come from all walks of life. Some are unemployed,
some are professionals,
some are single,
and others are married and/or with children.
They come with all different combinations of skills and challenges. Some look obvious and others, you’d never know unless they told you.
Despite the fact that adult services remain hard to access, there is hope in that more research is being done with adults, and more is being learned about how to cope with it in addition to a growing advocacy movement by and for people with Autism. I will leave you with this beautiful music video by a fellow Aspie woman. Her voice is absolutely lovely. Please share and raise her up.