Wednesday, November 12, 2014

Neuro-diversity, the (a) Final Frontier...


Repost from 7/15/14:

I would argue that prejudice against the developmentally disabled is at once the most acceptable, and yet hidden  form of discrimination on a social level.

Many my age grew up in  what some refer to as the developmental disability  latchkey times.  

I myself would only find out in my 50s that the entire truth was kept from me, and filtered  and kept from my extended family.  My parents knew of my ACC, and yet did nothing about it (even considering little could be done in those days, it identifies a major congenital birth defect.  

This is how the latchkey thing works:  "(s)he seems to be ok, (s)he walks, (s)he talks, so we'll ignore it."  This advice even came from doctors, betraying there own ignorance of the implications of something like ACC or ASD.  While my parents tried to help when I was younger, by the time I was 12-13 (the "magic age" in ACC when everyone who has a Corpus Callosum begins to socially integrate and mature, and we are left in the dust.  Having talked to many adults with ACC (particularly those more "visibly" effected) I hear over and over again (as is true for myself) that we doubted our sanity, more than once in life, before we knew of our diagnoses.

I have always known that I was different, speaking for myself at least; it was glaringly obvious from a very early age.  My parents, they refused to speak about or acknowledge my difference, sans only with the responses of shame, blame and anger.

The four common ways seen in society today that reinforces this attitude, and even is used to find this form of bigotry acceptable are:

Stereotyping, Stigma, Psychological Discomfort, and Pity

One sees the example of stereotyping every time someone shouts at someone visual impaired, even trying to ambulate them, as if they couldn't use their arms and legs.  A common stereotype one sees is that all mental or developmentally disabled people are violent or dangerous, or that physically disabled people must be mentally disabled too.  Finally, there is the lovely treating the disabled as if they are children.

Stigma; a mark of disgrace associated with a particular circumstance, quality, or person. It is a long standing part of Judeo-Christian culture promotes the idea that deviance from physical or mental norms is linked with deviance from moral norms. The Bible begins with the tale of Cain's being physically "marked" as punishment for killing Abel, and continues with numerous other stories associating disability and disfigurement with sin.  One need only look into the tales of the Brother's Grimm, Shakespeare and modern film to see this over and over again.

Regarding psychological discomfort, studies show when individuals are asked to interview a person with an apparent disability, there are more restricted in their communication, express views less representative of their actual beliefs, and  they will terminate the interview sooner than when interviewing the same person when that person appeared to have no disability.  Also people maintain a larger "body distance" from the disabled (or seemingly disabled) person, while if performing the same task with an "abled" person much more up close.

Now to my biggest pet peave, paternalization & pity:

Often people will view those with disabilities as neither incompetent, evil, subhuman, unnerving nor repugnant.  Still, they harbor concepts about them that result in diminished opportunity or outright segregation.


These people believe that the world is simply too much of a struggle for persons with disabilities, and, therefore, that they should be protected from its chalenges. Paternalism enables the dominant elements of a society to express profound and sincere sympathy for the members of a minority group while at the same time keeping them in a position of social and economic subordination.

The outcry that accompanies prejudice against racial, ethnic and religious minorities is rarely exhibited in regards to prejudice against the disabled. This lack of response is a paternalistic notion that persons with disabilities, unlike other minorities, "deserve" to be treated unequally.

Canadian studies found that, although two-thirds of employers expressed willingness in principle to hire persons with developmental disabilities, at the conclusion of the survey only 26% of them would agree to receive job inquiries from such persons.

Often people who would outright deny and disability bigotry, nonetheless respond in a prejudiced and exclusionary manner in real life situations with a disabled person.

You may have noticed, for the most part I have been reflecting on the visibly disabled.  I would also argue that the bigotry affecting the disabled in some ways is more pernicious and hateful towards those with "invisible" or "hidden" disabilities.

Not only those with mental or developmental disabilities, but countless physically disabled also have invisible disabilities.

This bigotry and hatred of the disabled can take most ugly forms.  One has only to look in the "news" to see this.  Who comes to mind immediately is Alex Spourdalakis murdered by his mother, and then his memory exploited by Eugenics based groups such as "Autism Speaks."  (Autism Speaks, does not in any way represent the scientific study of Autism, it's causes, effects, etc, but is based on bogus bs and pseudoscientific claptrap.)
Alex Spourdalakis, alive and happy

The concept of "normal" in regards to neurology, well, it simply does not exist.  The lovely little color charts of human anatomy and physiology that you looked at in high school (or even college and graduate school) are average or "typical" of human anatomy, to be certain, but only typical.  Anyone who has  been exposed to gross anatomy can tell you that there is a huge variety and difference in organs of the body, including the brain.  We are all individuals, we are not carbon copies of "perfect human body" or broken carbon copies...no, we are not.

Even taking into account the variation in genetic materials (your genome is unique amongst all human beings) there is also the individuals phenotype.  Your phenotype is your own set of observable characteristics resulting from the interaction of your genotype (genetic material) with your environment/social construct.

The concepts "normal" and "abnormal" are moreso a social judgement than a scientific conclusion.  They are rooted in the history I've mentioned earlier.

In 1973 the (American) Rehabilitation Act became law; prohibiting discrimination in federal programs and services and all other programs or services receiving federal funds.On July 26th of 1990, 3 days before my 28th birthday. George Bush signed into law the Americans with Disability Act. Prior to these laws being established in the United States it was clearly legal to discriminate against me based on my disablity.  Prior to this time, I did not have the legal right to decide my own housing/employment/relationships/medical care.

I for one, have decided that I will no longer strive to be simply "tolerated."  I am a (unique) individual, with unique gifts, talents and deficits, not unlike any other human being alive today.  I will insist, for myself, and all other-abled individuals, that we be allowed our place in society, be given equal rights, equal respect, and equal dignity.

It is time for mankind to move beyond this bias towards the other-abled, in all our forms.  The other-abled, may be your brother, or sister, mother or dad, relative or friend, perhaps not today, perhaps tomorrow, but they (or you or I) will be.  Those that insist on pushing us out of their sight, their memory, their presence, will be in the most horrible shock of their lives, when they find themselves in my (and many other-abled's) position, because, they will, whether or not they wish to remain blind to that fact.

Anyhow, that's enough of my thoughts for ya'll to chew on today

~Joseph

2 comments:

  1. great read. my son, who is 6 weeks old, was diagnosed with acc about 2 months before he was born. i knew nothing about the condition, i had never even heard of it....and my wife and i were terrified and heartbroken. i have been doing a lot of reading about it online the last few weeks, trying to get to grips with what it is and its consequeces. i read alot from people who have a kid with the condition. but what i wanted to know was what are the experiences of adults who have grown up with acc. from your blog and from others i have read i have so much more hope for him in the future.
    im looking forward to reading the rest of your blog. i think it might help my wife too

    ReplyDelete
  2. great read. my son, who is 6 weeks old, was diagnosed with acc about 2 months before he was born. i knew nothing about the condition, i had never even heard of it....and my wife and i were terrified and heartbroken. i have been doing a lot of reading about it online the last few weeks, trying to get to grips with what it is and its consequeces. i read alot from people who have a kid with the condition. but what i wanted to know was what are the experiences of adults who have grown up with acc. from your blog and from others i have read i have so much more hope for him in the future.

    ReplyDelete