A Brief History of Down syndrome - Part 7: Abused, Neglected, Forgotten

"Euthanasia through neglect..."

– Albert Deutsch

As World War II raged on, the number of admissions to institutions continued to increase.  The amount of workers in the institutions continued to decrease however, as more men were being drafted every day for the war effort. Overcrowding quickly became the norm once again, with patients in hallways and even sharing beds. Without privacy, without comfort, without possessions, without support, patients were completely dehumanized and ready targets for abuse.  Conscientious objectors, those citizens who refused to fight in the war for ethical reasons, were readily employed by the institutions to help fill the ranks.  It is these people that began to expose the horrors of mass violence and neglect.

Patient record from Letchworth Villiage.
Photo courtesy of The DNA Learning Center

Those with disabilities were viewed as sick within a system that was highly medicalized;  each institution was run by physicians and staffed by nurses.  In the US, "state hospitals" housed the mentally ill while "state schools" held those with intellectual disabilities.  Areas within both were referred to in terms of "wards" or nursing units. "Patients" had "charts" and attended "therapy" or "programs".  People were referred to by their disabilities, thereby fostering more dependance on the medical establishment.  As feeble-mindedness was "incurable", patients under this system would require complete care as it was due to their "sickness" that people were institutionalized.  At the same time, many cities in the US continued to uphold "Ugly Laws", passed earlier in the century which made being disabled a crime.  This piece from the Chicago Municipal Code, sec. 36034 includes the following ordinance (that was not repealed until 1974):

"No person who is diseased, maimed, mutilated or in any way deformed so as to be an unsightly or disgusting object or improper person to be allowed in or on the public ways or other public places in this city, or shall therein or thereon expose himself to public view, under a penalty of not less than one dollar nor more than fifty dollars for each offense."

"We were greatly heartened by the appearance. It resembled a
college campus." Image courtesy of the Disability History Museum

After the war, doctors continued to urge parents to place their children in institutions.  During this time, having a child or family member with a disability was seen as a burden.  This story from The Rotarian in 1945 clearly displays the thinking of the day where "A Father" outlines the reason for institutionalizing his daughter for a "hopeless brain condition", diagnosed after a stay at a children's centre:

"After two weeks of observation and a brain X ray, the doctors decided that Mary Lou had a hopeless brain condition and recommended that for our own good and the welfare of the two children we place her in an institution."

The "brain x-ray" in this case is probably referring to a common diagnostic technique of the time, Pneumoencephalography, whereby small holes were bored in the skull, the protective cerebral spinal fluid drained from around the brain and replaced with gas, usually room air, oxygen or helium.  An x-ray was then taken.  The procedure was quite painful, caused headaches, nausea, vomiting and delerium that could last months until the body naturally replaced the cerebral spinal fluid. At worst, it could cause brain damage, paralysis and death.

"A Father" felt, if Mary-Lou was kept at home, it would disrupt family life and result in public ridicule and shame;

"If we did [keep her at home], we should have to curtail normal family activities, to make the environment as simple as possible, for, as is typical in such cases, Mary Lou became frantic over the bustle of the simplest household tasks. We knew, too, that we would have to devote the major part of our time to her, leaving her little brother to develop as best he could. We felt that he already had been neglected.

Also, having witnessed the ridicule and ill treatment which residents of our home town turned on the "village half-wit" and his family, we understood what keeping her with us would mean to our family..."

Her admission to a state facility was described as quick and efficient;  the results curative.  The story concludes with "And so tragedy came into a family that barely knew the word. We think, we pray, we have faced it wisely".

Between 1946 and 1967, the number of people with disabilities that were housed in public institutions in America increased from almost 117 000 to over 193 000, a population increase that was almost double that of the general post-war "baby boom".  As time went on, those admitted were becoming younger and their disabilities more pronounced. In regards to Down syndrome in particular, there were many cases where fathers and doctors conspired to have a baby institutionalized and then told the mother that the baby had died.

Albert Deutsch, who has been described as "a crusading journalist" wrote The Shame of the States in 1948, a compilation of his serial articles (previously published in major newspapers) which exposed the conditions of Letchworth Village in New York.  At the time, Letchworth was considered to be one of the better institutions in the US, as it had taken great pains in its creation to ensure that the overcrowding and abuses that had occurred in other places would not be repeated there.

Opening in 1911, Letchworth Village was one of the first completely encapsulated "state schools".  It included its own farm, power plant and hospital.  In the words of the first superintendent, Charles S. Little;

..."buildings should not be more than two stories high, nor should they contain more than seventy inmates; that the basements should not be used for purposes other than storage; that the dormitories should be at least two hundred feet apart, with sufficient space for each to have its own playgrounds; that there should be such separation of groups that inmates of one grade could not come in contact with those of another grade; and that in locating the buildings advantage should be taken of the natural beauty of the place."

Photo of Letchworth Village, looking like a college campus.

Patients were divided into separate categories or "grades" and were kept apart:  "moron", "imbecile" and "idiot", the last deemed "untrainable" and therefore initially excluded from admittance to Letchworth as they were unable, in his eyes, "to benefit the state".  As further described by Little:

"...it is a home where the feeble-minded and epileptic of all ages may be given the pleasures and comforts of the ordinary home. To this end our day rooms will be provided with games, colored pictures, flowers, music, etc. Each dormitory will have its own playgrounds where base-ball, football, basket-ball, croquet, etc., may be played by the children. Swings, hammocks, and picnic grounds will be provided for in a grove. Holidays will be celebrated in an appropriate and American fashion. A birthday party will be given each month for those having birthdays that month, making a gala evening for all. Inmates and employes will join in a weekly dance. There will be Sunday services appropriate to the condition and belief of the various inmates."

Residents tended to fields and flocks of livestock, built roads, shoveled coal and made toys at Christmastime.  It may sound idyllic, but by 1921, of the 506 people listed at Letchworth, 317 were between the ages of 5 and 17, while 11 were under the age of 5.  Their labour force consisted mainly of children and visitors and staff would report shortages of food and that the patients looked ill and malnourished. 

As time went on the population at Letchworth continued to grow.   Despite this, the state refused to construct any additional buildings and by the end of 1921, 1200 patients were housed there.  By the 1950's, that number had swollen to over 4,000.  Families were abandoning their relatives there to be forgotten.  Deutsch called it "euthanasia through neglect...".

Photographer Irving Haberman did a photo series on Letchworth which further exposed the conditions of the dirty, malnourished, neglected unkempt patients.  Residents are seen huddling naked in the day rooms. Similar exposés were done on many other institutions;  Time magazine would feature Byberry Hospital, also known as the Philadelphia State Hospital, in 1946 which exhibited appalling imagery of overcrowding, abuse and severe neglect.

The Nuremburg Code was created in 1947 and gave worldwide guidelines for human trials and experimentation.  However, many children in the state schools were still the subjects of experiments, including early testing for vaccinations. Many doctors at the time argued that these rules applied only to Nazi atrocities, not American medicine.  The first polio vaccine was in fact tested at Letchworth in 1950, after much lobbying by the then superintendent, Dr. Jervis.  By that time, Letchworth was considered to be highly regarded in the medical community, despite it's shady reputation in the greater community.  The Fernald Center in Massachusetts (superintended by eugenisist Walter E. Fernald) was the site of a joint experiment between MIT, Harvard University, The Atomic Energy commission and the Quaker Oats Company that exposed male patients to radioactive isotopes between 1946-1953.   Parents were given the following notice:

Dear Parent:
In the previous years we have done some examination in connection with the nutritional department of the Massachusetts Institute of Technology, with the purposes of helping to improve the nutrition of our children and to help them in general more efficiently than before.
For the checking up of the children, we occasionally need to take some blood samples which are then analyzed. The blood samples are taken after one test meal which consists of a special breakfast meal containing a certain amount of calcium. We have asked for volunteers to give a sample of blood once a month for three months, and your son has agreed to volunteer because the boys who belong to the Science Club have many additional privileges. They get one quart of milk daily during that time, and are taken to a baseball game, to the beach and to some outside dinners and they enjoy it greatly.
I hope that you have no objection that your son is voluntarily participating in this study. The first study will start Monday, June 8th, and if you have not expressed any objections we will assume that your son may participate.
Sincerely yours,
Clemens E. Benda, M.D.
[Fernald] Clinical Director

What was not mentioned to the parents was that the calcium given to their children in the milk was radioactive.

From the mid 1950's to the early 1970's, researchers at the Willowbrook State School in New York, carried out experiments on children that were deliberately infected with Hepatitis A and then treated with gamma globulin.  In the early years of the study, patients were fed infected fecal matter.  Later they would be injected with more pure versions of the virus.  Those that investigated the abuses surmised that the children would probably have gotten Hepatitis at Willowbrook anyway due to frequent outbreaks, so that it was probably "for the best" that they got it under such scientific circumstances.  At one point the school was closed to new admissions, except for the Hepatitis program.  This led to parents agreeing to allow their children to be the subjects of experiments, just to be able to admit their child to Willowbrook.  Either way, both parents and children were given very little choice whether or not to participate in the program.

Patients at Letchworth.  Photo courtesy of Bob Paley

Between 1917 and 1967, those that died at Letchworth, Willowbrook and other facilities like them, were buried anonymously. Steel or stone numbers were their only monument, possibly due to cost or at the families wishes of privacy.  Regardless, even in death, these people were denied their basic humanity, up to and including their own name.

In 1948 in Great Britain, the National Health Service (NHS) was introduced and institutions were now nationalized and transformed into actual hospitals (yet run like schools).  Emphasis then shifted to admitting only the most disabled and those with behavioural issues. Also that year, the National Assistance Act (which replaced the "Poor Laws" of Elizabeth I) made it a duty of local authorities to  arrange assistance for those who were deaf, blind, dumb, handicapped by illness, injury, congenital deformity or suffering from a mental disorder (which included developmental delays). This included increasing access to specialized education.

Image courtesy of The Minnesota Governor's Council on Developmental Disabilities

In 1950, another surge of advocacy took place in the United States.  Parents had begun to organize and had created the National Association of Parents and Friends of Retarded Children (which would later become The ARC).  By 1952 many US states had created legislation for educating children with intellectual disabilities (although those that were classified "moderate" to "severe" were excluded).  As the 20th century would progress, the horrors of the institutions were becoming more commonly known, yet still persisted.  Sterilization, lobotomization, tortuous experimental "treatments" and physical abuse were still the norm and the numbers of children being admitted continued to climb.  Instead of "feeble-minded" "moron" "imbecile" and "idiot" the terminology of choice was now changed to retarded, a blanket term that included any and all learning disabilities and developmental delays. ("Mongolism" would still be used to describe Down syndrome until 1965).  With the ease of one word, society was now able to dismiss an entire segment of the disability community, while callously watching their plight on the evening news.

By the 1960's even the architecture of the institutional buildings had evolved to reflect the culture of medicine, of the hospital.  Staff had separate showers, lounges and toilets.  The floors were easy to wash tile, bathrooms were stall-less and completely devoid of privacy for ease of both cleaning and supervising residents en masse.  Furniture was sparse, hard and unwelcoming.  Medical professionals wore clinical white uniforms and jackets, their names and position clearly displayed on name tags.  It was a stark contrast to the patients who wore communal clothing of various states of (dis)repair. It was very clear who was in control.

Niels Erk Bank-Mikkelsen, the director of the Danish national services for Mental Retardation visited an institution in California in the 1960's.  His report included the following "I couldn't believe my eyes. It was worse than any institution I have seen in visits to a dozen foreign countries. . . . In our country, we would not be allowed to treat cattle like that."

From "Christmas in Purgatory".  Image courtesy
of the Disability History Museum

President John F. Kennedy Jr. formed The President's Panel on Mental Retardation in 1962.  The panel was comprised mainly of medical professionals and focused on both treatment and prevention.  "Retardation" itself was seen as something to "combat".

Senator Robert Kennedy toured Willowbrook in 1965, (accompanied by a TV crew) and compared it to a "snake pit".  It's population of 6000 children was 2000 over capacity.  He described the children as "living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo".  Later he would address a joint session of the New York legislation regarding the "dehumanizing" conditions at both the Willowbrook and Rome State Schools.  During his speech, he declared that the residents of the institutions were denied both access to appropriate education and their overall civil liberties.  The following year, Willowbrook was featured again as one of the institutions in "Christmas in Purgatory" when Dr. Burton Blatt and photographer Fred Kaplan used hidden cameras to capture images of the atrocities in several institutions.  According to Dr. Blatt "there is a hell on earth and in America there is a special inferno".  Senator Kennedy received a great deal of backlash from his comments, most insinuating that non-medical personnel would be unable to classify or understand what they were witnessing in "whirlwind tours".  Dr. Blatt reacted to them thusly:

"It does not require a scientific background or a great deal of observation to determine that one has entered the "land of the living dead." It does not require too imaginative a mind or too sensitive a proboscis to realize that one has stumbled into a dung hill, regardless of how it is camouflaged..."

"Christmas in Purgatory" also gives insight into the treatment of infants and very young children in such places.  Warehoused in extremely overcrowded, spartan surroundings and devoid of stimulation including human touch, it is easy to see how the people there never stood a chance.

From "Christmas in Purgatory".  Image courtesy
of the Disability History Museum

"The infant dormitories depressed us the most. Here, cribs were placed-as in the other dormitories-side by side and head to head. Very young children, one and two years of age, were lying in cribs, without interaction with any adult, without playthings, without any apparent stimulation. In one dormitory, that had over 100 infants and was connected to 9 other dormitories that totaled 1,000 infants, we experienced a heartbreaking encounter. As we entered, we heard a muffled sound emanating from the "blind'' side of a doorway. A young child seemed to be calling, "Come. Come play with me. Touch me."

"In other day rooms, we saw groups of 20 and 30 very young children lying, rocking, sleeping, sitting- alone. Each of these rooms were without toys or adult human contact, although each had desperate looking adult attendants "standing by."

"In some of the children's dormitories we observed "nursery programs." What surprised us most was their scarcity and the primitiveness of those in operation. Therefore, we were not unprepared to see several children with severe head lacerations. We were told these were "head bangers." Head banging is another condition that some people think is inevitable when confronted with young severely mentally retarded children. We challenge this. We have reason to believe that head banging can be drastically reduced in an environment where children have other things to do. The "Special Education" we observed in the dormitories for young children was certainly not education. But, it was special. It was among the most especially frightening and depressing encounters with human beings we have ever experienced..."

This news special produced by NBC in 1968 still clearly shows subhuman living conditions in The Pennhurst State Home in Pennsylvania.

"Suffer the Little Children" by Bill Baldini

Although these reports and many like it would spark legislation that would begin the closing of the institutions, many were open and still functioning like this until the early 1980's. Despite frequent exposés in the Staten Island Advance and other area papers, the allegations of abuse at Willowbrook continued to surface.  In 1972, Geraldo Rivera, then working as an ABC News reporter, went to Willowbrook to film "Willowbrook:  The Last Disgrace".  His story, which won a Peabody Award, showcased the overcrowded, unsanitary conditions and the physical abuse of the patients by the staff.

Even with all the publicity, even with all the images, stories and coverage, the institutions, according to one doctor at Willowbrook, had only worsened since Kennedy's visit.

The classification of "retarded" and related terms would continue to affect public perception and access to care for people with intellectual disabilities well into the 21st century.  In the UK, a pamphlet published by The National Society for Mentally Handicapped Children in 1973 (eight years after the term mongolism had been changed to "Down's Syndrome"), had this to say:

"when informed by their doctor that their child is affected with mongolism and warned that it may show some mental backwardness, parents often imagine the worst and think that their child will never walk or talk.  Although a few mongol children are as handicapped as this and they can live at home when young, they will probably later need permanent hospital care..."

"... Due to their slow intellectual growth most mongols are precluded from making satisfactory progress in formal education of the type provided by Local education authorities. However they benefit from the less formal type of education which they receive at the special centres provided by the local Department of Health although these are not always yet available in the more sparsely populated areas of Britain.

In addition to the two already mentioned there is a third considerably smaller group of children with mongolism who are even less backward and devlop intellectually from a half to two thirds the rate of an average child. Many of this group can profit from formal education, particularly when given in the smaller classes with specially trained teachers in schools for the educationally subnormal"

Doctors continued to refuse lifesaving procedures (such as heart surgery) to those with Down syndrome up until 1984;  in fact there were many physicians that still classified feeding a child with an intellectual disability to be a lifesaving procedure.  Until the institutions were finally closed, hundreds of thousands of people with disabilities had been discarded by their families, segregated, abused sexually, physically and mentally, not to mention violated by sterilization and experimentation.  All with society's blessing as it was considered "the right thing to do".

We may never know the full extent of the abuse, nor of how many people with disabilities were disposed of out of hand, like so much garbage.  It would take almost to the end of the last century for the final institution to be closed.  It would take even longer for the general public to begin to understand terms such as "dignity" "rights" and "civil liberties" in relation to those with intellectual disabilities.  The term "retarded" is just now being replaced in the medical literature; it will no doubt take many more to remove it from Western vernacular.

We in society have a responsibility to ensure that these victims are not forgotten.  We also have a mandate to ensure that such atrocities never happen to another human being ever again. 

Anonymous graves at Letchfield Village.  Photo courtesy of the New York Times.

[Next time:  The rise of the parent advocate]

Applebome, Peter. "Giving Names to Souls Forgotten No Longer." The New York Times. The New York Times, 13 Dec. 2007.

Buteux, Lindsay. "Letchworth: The Village of Secrets." Outlook Student Press. Outlook Student Press, 8 Nov. 2010.

Chicago Municipal Code, sec. 36034 (repealed 1974).

Christmas in Purgatory, Blatt and Kaplan, (Previously published by Allyn and Bacon, Inc., 1966) current copyright, Human Policy Press, Center on Human Policy Syracuse University P.O. Box 35127 Syracuse, NY, 1974. 
 
Corcoran, David. "THIELLS JOURNAL; Graves Without Names for the Forgotten Mentally Retarded." The New York Times. The New York Times, 09 Dec. 1991.

"Disability History Exhibit." Disability History Panels. Alaska Department of Health and Social Services.

Harkins, Don. "Federal Government Publishes Confession; 1995 Report to Clinton Documents 30 Years of Radiation Experiments." The Idaho Observer [Spirit Lake, Idaho] May 1999: The Idaho Observer.

"Legend Tripping in Letchworth Village." AbandonedNYC. N.p., 5 Aug. 2012.
Little, Charles S., MD. Letchworth Village: The Newest State Institution For The Feeble-minded And Epileptic.  The Survey, 12 Mar. 1912.

Paralells in Time; A History of Developmental Disabilities, The Minnesota Governor's Council on Developmental Disabilities, 2012.

Staff (September 10, 1965). "Excerpts From Statement by Kennedy". The New York Times.

Suffer The Little Children, Pennhurst State Home: Eugenics + Social Services - Pennsylvania. Perf. Bill Baldini. NBC10, 1968.

Slater, Catherine, MA. "A History of Mental Disability 1000AD-2000AD:From Idiocy to Intellectual Impairment Web. 22 July 2013.

The Child with Mongolism: 80 to 90 Per Cent Can Learn to Do Simple Tasks. Great Britain: National Society for Mentally Handicapped Children, 1973. Print.

"We Committed Our Child." The Rotarian (1945): Disability History Museum.

"Willowbrook State School." Asylum Projects. Asylum Projects, n.d. Web.

A Brief History of Down Syndrome: Part 1, Part 2, Part 3, Part 4, Part 5, Part 6, Part 7

[R] Evolution

I've been checking out a lot of my old posts as I update our home on Tumblr.  Through this, I have been able to enjoy the first days of twin-dom all over again.  It all comes back so easily, those first days, so full of joy and apprehension and utter exhaustion.  There is so much rawness in those early posts.  So much realness.  I can still smell and feel the hush of the NICU, its low lighting balm against my red-rimmed eyes.

There is anticipatory grieving there, under a blanket of rugged positivity.  There is a lot of crying in the shower, there are a lot of unknowns.  There were two fragile little lives there, with skin like wet tissue that would tear and bleed if you touched it the wrong way.   There were two babies that had to learn to eat, gain weight and not get an infection.  There were two little NG tubes, two little incubators making sure they had the correct amount of oxygen, the correct amount of humidity, the correct amount of light.  One baby was smaller,  whose birth weight of 4 lbs 1 oz plummeted dramatically, whose bilirubin was scarily high at one point, who had an IV long after her twin.  The other baby, the older one, was bigger, more "healthy" looking at first... however his ECG, his oxygenation, his little blue feet would give him away.  He has an extra chromosome and an AVSD, the width and breadth of which we would not know for sometime after his birth.   

Those fragile babies have now grown into robust toddlers.  The littlest has grown into the strongest, trying daily to prove that she is indeed Batman, even though her parents insist she not dive off the top of the couch.  She will climb anything and lift herself into a bridge between two pieces of furniture by just using her ankle.  Her twin is mastering standing on feet that seem too small for his size; feet that are no longer blue as they take their first halting steps towards cruising.  His heart has been mended, the memory of that time fades with the scar on his chest.  There were so many unknowns there in those first days, so much fear presumably stemming from their prematurity and related health concerns.  I am heartened to see in those early posts a glimmer of the future, of the place I am now.  It would have been easy, I suppose, to blame Wyatt's extra chromosome for all of that, for the time that took me away from my family, for the inconvenience, for the drain on our financial, mental and spiritual resources.  There are some who did, there will be some that inevitably will.  In reading those old posts, it became clear to me that I never did that.  "Extra chromosome" is two words out of the paragraph above, two words that bear no more significance that the ones that surround them.  Those babies, fragile as newborn chicks have grown into some pretty kick-ass kids.  Along the way I stopped being a "mommy blogger" and became something else.  There is evolution here.  There is a revolution here.

As I've said before the rhetoric of Ableism runs deep.  The undercurrent of such shapes how we view those that have physical and cognitive differences from the rest of us.  This is where the heart of my regret resides, as the part I am most guilty of and have to forgive myself for, lives here.  I participated not just as a member of the human race, but also as one in a position that really should of known better, a health care professional.  Paternalism, one of the largest branches of Ableism, was embraced wholeheartedly in this house.  We were going to do "what was best".  Coming from a medical tradition, in those early posts, you can see that DS to me was a list of symptoms.  A list of diseases and illnesses to be researched and treated.

I looked at these lists a little closer, as time went on and I realized that almost all the "symptoms" listed were things that could occur to anyone.  In fact, there were more than a few things there that I have personally--and I consider myself to be a reasonably healthy person.  But, according to this list, if I had an extra chromosome and the same conditions, I would be very unhealthy.  Poorly, even.  I had to overcome the rhetoric of "Down syndrome is not compatible with life".  I did that... and wept at my presumptuous past.  Now that I look back, I realize that a lot of that 'grieving' that followed the twins homecoming had nothing to do with what was happening with them medically.  Rather, it had to do with the slow realization that I had disregarded, out of hand, a whole segment of the population, while maintaining the premise of advocate for others.

Thanks to the  culture I was raised and educated in, I actually did believe at one point that those with "severe" developmental delays were devoid of an inner life, possessing only an absence of inner thought beyond certain rudimentary instincts.  Life was described as functions.  Base, bestial.  That rhetoric runs deep even today as many people still believe people with intellectual disabilities are no better than animals. 

In my nurse world, we used to get a lot of what we then called "severe autistics" who were brought to hospital due to aggression.  They were quickly medicated, restrained, controlled.  No one stopped to ask the cause of the aggressive episode that precipitated their hospital visit, rather it was just accepted as something that happened.  It was "to be expected".  That was autism when I started my career.  Acting out, feelings of complete sensory overwhelm and overload, these don't seem foreign to me any more.  Through the tireless efforts of self advocates and the extended autism community; these behaviours now have explanations and many, including myself --- through the years, as I gained experience --- have acquired further insight.

Quite frankly, I feel a little this way after a while if I don't pace myself.  If I don't take vacation, if I don't stagger outings, if I don't employ my coping mechanisms, I end up feeling like I am covered in post-it-notes.  I become swamped by psychic and emotional clutter that is inevitably left over from an average day at the office.  Certain clothes hurt.  Sounds grate, smells gag.  I don't have autism.  But I can relate, even if only in a miniscule way.  That had to be learned.  Common ground had to be found and the rhetoric of "devoid of meaningful thought" had to be overcome.  But it did.  I did... and was completely horrified at how I had viewed my fellow humans.

Old ways can be overcome through the tireless efforts of others, it is true.  The rhetoric that we possess about others, whether ableist or cultural in origin, run so deep in our psyches that we don't even know that they are there.  They are.  They can also be found and carefully rooted out through education and self reflection.  Perceptions can evolve.  Language can change.  It is very frustrating in the advocacy world as you often come across people that are so ignorant, so willfully opposed to learning or accepting a potentially new way of thinking about other people that it is very tempting to give up.  It is very easy to assume that some people are beyond hope, beyond reason (and thereby become as close-minded as those that you hope to affect).  I don't have the liberty of thinking that way; I was one of those seemingly hopeless, arrogant people and yet, here I am.  I will forgive myself for subscribing to the ableist rhetoric for so long and continue my personal evolution as my family grows. However, I will not forget.

Changing current perceptions about Down syndrome will require a larger presence of (for lack of a better term) self-advocates.  It is those with DS themselves that will finally spearhead putting the rhetoric down for good.  Then, we can put to rest the notion that people with Intellectual Disabilities/Developmental Delays are unable to champion their own rights and simply refer to them as we would any other advocate.  The next chapter in this civil rights struggle has yet to be written.  I and those neuro-typicals like me won't be the ones writing all of it either;  we will have the privilege of participating, to help things unfold and to amplify the message.

There is evolution hard at work here, even within the revolution itself... 

Picking Rocks

"Ableism is so pervasive that it is difficult to identify until one begins to interrogate the governing assumptions of well-intentioned society. Within the space allowed by these rhetorical premises, ableism appears natural, necessary, and ultimately moral discrimination required for the normal functioning of civilization."

[A]bleism is that most insidious form of rhetoric that has become reified and so widely accepted as common sense that it denies its own rhetoricity—it "goes without saying." To fully address it we must name its presence, for cultural assumptions accepted uncritically adopt the mantle of "simple truth" and become extremely difficult to rebut. As the neologism "ableism" itself testifies, we need new words to reveal the places it resides and new language to describe how it feeds. Without doing so, ableist ways of thinking and interpreting will operate as the context for making sense of any acts challenging discrimination, which undermines their impact, reduces their symbolic potential, and can even transform them into superficial measures that give the appearance of change yet elide a recalcitrant ableist system..."

[Excerpts from  James. L. Cherney's "The Rhetoric of Ableism."]

 
I'm a mother and a nurse, not a scholar.  I'm not going to make any pretensions about that.   I'm also a half-assed gardener and occasionally, I take a pretty picture of something I've grown or of someone to whom I've given birth.  As a "writer" I am one voice in the wilderness of the blogosphere.  I came into this role woefully unprepared and in the process have discovered many things about Down syndrome, our world, our Western society and indeed, myself.  I started this place as a "Mommy blogger" and am slowly growing into a disability advocate.  I started out thinking that I could try to change a few minds and that would help create a world that was more receptive to people like Wyatt.  I wanted to help build a garden where old stereotypes did not linger in people's minds. A world where the phrase "my son has Down syndrome" would not automatically generate uncomfortable looks, apologies or awkward exclamations of sentimental rubbish.

Lately, I've been preoccupied with the subject of ableism and how it impacts my son.  Western culture is rife with it.  It is buried, deep within the rhetoric, deep within the language that we use to share our opinions to one another.  When it comes to the subject of advancement of people with intellectual disabilities such as Down syndrome, the tools that we advocates have chosen to use may appear to advance our goals of inclusion and acceptance. Sadly, those tools, in many cases, do the exact opposite.  How we view disability, how we see each other, how we as parent and friend advocates feel about the the world-at-large all impact our efforts. I've also realized that I shouldn't be planting anything for my son, but rather preparing the soil for him to sow a garden of his own.


It was those two quotes above that finally clarified what I had suspected for some time.  We are overgrown with ableist rhetoric, whether we mean to be or not, no matter how "good" our intentions. On the surface, the very words that we choose shape how others perceive us and how we see the world. The grand daddy of them all, the R word, is a perfect example of this.  However, the dialogue goes deeper than that.  Like rhizomes, negative concepts that shape our entire perception of disability are spread throughout our history, dating back to Aristotle.  As Cherney states, ideas such as "normal is natural", "disability is evil" and the "body is able" are rampant throughout the Western world.  Other rhetoric, including those that incorporate socioeconomic or religious ideals (such as "disability is uneducated", "disability is baseborn", "disability is ethnic") seem to sprout up everywhere.

These are all part of our great post-colonial tradition of "less than".  Our everyday language shows that we see others with disdain.  That able and functioning at optimum physical perfection is what we are all supposed to be and anything else is a failure;  lesser;  unworthy.  Even amongst "disabilities" there is a difference.  We in the Western world commonly refer to those that employ physical assistive devices such as wheelchairs and support animals as "differently abled".  Those that have cognitive impairments however are "developmentally disabled".

As I've mentioned, I come from a medical background.  For years, I embraced a more mechanical definition of disability, which in its most basic form states "this part isn't working as it should, therefore the patient is disabled". The person is seen as broken, malfunctioning, stunted.  This quickly leads to pity disguised as empathy.  Then to romanticism, as an artistic touch is now given to what is "broken".  A more realistic viewpoint is the social model; this way, disability is described by a series of barriers, exclusions and negative attitudes (that includes language).  An individual may have a physical, cognitive or psychological difference from their neighbours, but it is the lack of societal provision that makes it an actual disability.  Humanity is diverse and flourishing;  it is only when a person runs into a situation where their needs are not met, can they be defined as actually having a disability.  Most can easily relate this model to well known things, such as ramps or closed-captioning. However, when it comes to DS and challenges of communication and interpretation, as a culture we cannot seem to move beyond the medical model.  No one seems to want to say that it is society that has disabled these individuals, not their neurological makeup.  Even within the whole of the disability community itself, those with Down syndrome and related developmental disorders are considered less than.

From the medical tradition you also get the -isms:  Infantilism, where those with DS are seen as adult babies,  "Baby Huey", or 'forever children'.  It is probably the most insidious, as it strips all dignity and sense of self and worth from the individual.  They are forever dependent, in the most basic sense.  There is also Anthropomorphism, where those with Down syndrome are referred to in supernatural or angelic terms or possessing traits that are more like "powers".   Quite possibly the most sneaky of them all (and one that I am guilty of as well) is Paternalism, where all decisions, beyond a point where they should be made by the person themselves, are removed and placed in the hands of those who are deemed--by the same abilist society--as being more qualified, be they parent, school, doctor or organization.   This model often decides "what is best" and assumes as Cherney states, that "it goes without saying", based on old, outdated practices and ideas.  For example, we are told that those with DS do not follow "typical" patterns of growth or development and that these ideals should not be applied.  Yet, we still continue to apply them with the attitude of "how else will we know whether the child is behind?",  instead of just allowing the child to develop at their own pace in a loving, supportive, caring environment.  IQ tests are culturally biased and archaic, yet we still continue to use them to determine 'level of cognition' and therefore predetermine a person's 'functionality' and thereby, worth.  Our organizations, both religious and philanthropic, readily fall into this trap too, as they betray their roots as the charities that they were originally founded as, to help "the poor unfortunates".   Regardless of the origin, regardless of some degree of "good work" having been performed, regardless of intent, the result is the same:  an abilist act grown of an abilist system.  Each and every time it is employed, it undermines those with Down syndrome.  It hampers efforts to become more visible, for those with DS to move out of the world of poverty and neglect.

Not surprisingly most of the Down syndrome advocacy movement is borne of this ableist system, myself included.  We allow the rhetoric to continue by ignoring demeaning language such as the R-word,  by describing our loved ones in childish terms, by giving them "angelic" or "superhuman" qualities, by romanticizing the medical definition of disability and by continuing to make all decisions for them.  We, the people that are supposed to be helping, are only perpetuating stereotypes.  Pictures of good looking kids with catchy sayings may sound like a good idea (and I won't deny that there was a certain purpose served by this initially), but they are not.  My son's extra chromosome is not kitsch, it is not property, it is not made of love.  He is not an angel and he himself is not perfection incarnate.  I did not design him either, nor do I believe a supreme being handcrafted him for our family... I only had the pleasure of providing half of his genetic material.

I've run into a lot of nationalism too.  Recently I read a Letterman-style "Top 10" list of reasons why one particular country was the best in which to raise a child with complex needs.  The article will no doubt be shared far and wide within the advocacy communities and it saddens me, as the article itself is so rife with inconsistencies, poorly researched half-truths and flat out falsehoods that it actually turned my stomach to read it.  Blogging communities seem to be often divided among these national lines as well.  There also seems to be some kind of hierarchy in the advocacy world;  the more disabled your child/loved one/you are, coupled with the amount of "time served" you have in this community, the more of an "expert" you are. Assuming there is such a thing in the first place. Politics within the movement itself are rapidly threatening its very life;  I don't know whether to laugh or cry when I see those calling for inclusion acting very negatively and exclusive in their practise. 

But what about the world outside?  Much of what gets published about Down syndrome or special needs in the mainstream these days might as well be misery peddling. Subjects that go well beyond simple anticipatory grieving seem to be de rigueur and are now perpetuating the negative stereotypes that we are fighting so hard against. Initially, I'm sure this trend was meant to be a way for parents to find fellowship in what can be some very long and seemingly isolating days.  But, how much negativity can one person read surrounding a certain condition before they start applying those traits to that condition?  In our sensationalist world, unless a piece about disability keeps things at status quo (ie: 'less than'), it is not publishable.  Full of anger towards your child's diagnosis?  Blame your child's diagnosis for your own personal issues?  STOP THE PRESSES!  Depression, disgust,  having to "force" one's self to play with one's own child... these are are all things that go well beyond the realm of a grief reaction or situational crisis and in the end only feed our detractors and probably belongs in a therapist's office.  In the end, which is worse?  Our own community disparaging those that they claim to represent, or those outside that hate our kids? 

Then there is the stereotypical "Down syndrome superstar", who by having a prom date or scoring a goal or participating in a major life event, allows all to feel misty, paternal feelings.  Add a little more anthropomorphism, in the guise of "angels" and "my child has made me a better person" and you have the  domain of inspiraporn, which is just more ableist rhetoric.  The reality is that not every child will be a superstar and the effects of the extra chromosome will vary from child to child, as well as the resources and supports made available to them.  I'm personally guilty of this one, not realizing that the reason I felt the way I did when Wyatt was diagnosed with his AVSD (and probable chromosomal disorder) in utero, was the ableist society in which I lived.  If my culture had not continued to push the idea of the "hardship" or the "broken child", would I have been as sad as I was initially with his diagnosis?  Would I have grasped blindly for for the first sign of positivity,  the first glimmer of "hope" in the form of staged photo-ops and over the top inspirational motifs?  Let me put it another way:  if one truly accepts people with intellectual disabilities and developmental delays as equals, these stories would not be news.  However, many cling to them desperately, willing to overlook the weeds of ableism and instead renaming it a wildflower of "awareness".

"Bucket of Rocks" shared with
permission from Chiotsrun.com

What this civil rights movement needs is more visibility.  Not from parents or people like me, but from the self-advocates themselves.  That is why I share almost everything from VATTA blog on our Facebook page.  It is the people with Down syndrome who need to create the language that describes them, it will be the self-advocates that create the new rhetoric to promote neurodiversity.  It is happening.  Slowly, seeds are germinating.

As one of my children has Down syndrome, I've had to evaluate my perceptions of disability over and over.  How will this affect Wyatt?  How can we, as his parents, best guide him to adulthood and allow him the freedom to advocate on his own behalf, whatever form that may take?  To reach "his full potential" on his own terms, not our abilist ones? At what point do I stop "parenting" and become "paternalistic"?  For now, I guess, my job is to continue to expose the rhetoric and ableism while nurturing the creation of a new construct, a new set of definitions that not only include neurodiversity but were created within that community.  Despite how disheartening all this can be sometimes, despite how physically and emotionally exhausting it is, I will continue to prepare the soil of this revolution.  My family will continue to explore the world of Intellectual Disability and Developmental Delay the only way we can, through the eyes of others, including our son.  I must persist with preparing this earth for my kids as they grow.  I know, one day, my son will communicate "It's ok, Mom... I've got this" and I will happily put down my bucket and drink a Mojito in the shade.  Until that time however, there is much work to be done.  All are welcome to offer a little sweat equity;  there is a lot of weeds to clear, soil to turn and rocks to pick...

"Picking Rocks.." shared with permission from Chiotsrun.com

---------------------------

Cherney, James L. "The Rhetoric of Ableism." Disability Studies Quarterly 31.3 (2011):  The Rhetoric of Ableism | Cherney | Disability Studies Quarterly. The Society for Disability Studies. Web. 03 July 2013.

Wordless Wednesday: Summer Kisses

In the News - June 2013

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of activism, of inclusion, of advocacy, of education, of hope and awareness.  Every day advocacy was a theme this month, as were reflections on motherhood.

Legend:

AUDIO	indicates an audio clip
APPEAL	indicates an online petition or plea
BLOG	indicates a blog post
EVENT	indicates a scheduled event
LINKS	indicates links or resource materials
PHOTOS	indicates photos
STUDY	indicates a study or discovery
THREAD	indicates an online discussion thread
VIDEO	indicates a video or movie

VIDEO	Restraint and Seclusion: Hear Our Stories
VIDEO	#justiceforethan
BLOG	My Not-So-Great Story: A Personal Experience with the NDSS & The Buddy Walk. Guest Post by Stacey Calcano
APPEAL	Attorney General of Maryland, Doug Gansler: Launch an independent inquiry into the death of Robert Ethan Saylor
BLOG	Proof that Tolerance is Usually Just a Matter of Education...
BLOG	In the News - May 2013
VIDEO	The Autism Project: Mothers with ASD ask why scientists are missing girls
	When the perfect baby you adore suddenly becomes a stranger: One mother describes how she fell into a black hole when her son was diagnosed with Down's Syndrome
BLOG	Communication and Support Through Hard Things
BLOG	Respect
BLOG	Multiple Choice Test –
EVENT	Peel students with disabilities participate in inclusive track and field event
BLOG	Just your average moms next door
	Exclusive screening of Finnish music and disability documentary for Cork
	The Global Plight of Disabled Children
BLOG	On the Question of Humanity
BLOG	Without Love
BLOG	A Dog By Any Other Name
BLOG	“Time to Listen”: Autism and the simplicity of relationships
APPEAL	Action Alert: Contact Governor O’Malley of Maryland to Demand an Independent Investigation Regarding the Death of Ethan Saylor - See more at: http://www.ndss.org/About-NDSS/Newsroom/Recent-News/Action-Alert-Ethan-Saylor-Update/#sthash.2UoMhRDE.dpuf Call to Action:  Contact Governor O'Malley of Maryland to Demand an Independent Investigation into the Death of Ethan Saylor
PHOTOS	100 Words: The Life Of A Sibling With Disability
VIDEO	I Am Not Invisible – Official Film Site
	Dying girl intubated as she awaits lung transplant
BLOG	What is this "Normal" of Which You Speak?
	Nearly 1 In 3 With Autism Have ADHD Too, Study Finds
BLOG	We Are in This Together
	Feds Call For Expanded Community Living Options
BLOG	Rep. Chris Van Hollen (MD) Celebrated as Ds Advocate
VIDEO	Workshop skills for people with disabilities
BLOG	Like a Person Like A Person
BLOG	Non-Speaking People Who Type
BLOG	a letter to my son
BLOG	Potential, Disability, and Human Worth
	Jobless Rate Rises For People With Disabilities
	Real Hope for Syria
APPEAL	Call to Action: Va. Lt. Governor Candidate E. W. Jackson
	Can We Please Get Our Facts Right?
BLOG	The Simple Humanness of Jude
	Facebook Hate Speech Problematic, Advocates Say
APPEAL	Call To Action: Frederick County Sheriff Department Accreditation Committee
BLOG	Don't be a Dick*
VIDEO	Birch School Investigation
	Supreme Court Steers Clear Of Special Education Dispute
	“A Doorway to a New Life”: A Conversation with George Estreich About Down Syndrome, Writing, and the Stories that Make a Family
BLOG	The Murder of Alex Spourdalakis
BLOG	Autism, language, and othering
BLOG	Hug your child tonight
BLOG	Holding Onto Light
VIDEO	U. research giving hope of better treatment for patients with Down syndrome
	No, It’s Not Okay for Bill Maher to Make Fun of Special Needs Children, Even If They’re a Palin
	Raising a Child with Special Needs: What About Your Needs?
	Do Medical Textbooks Intentionally Offer Outdated Descriptions of Down Syndrome? and Other Questions for George Estreich
	We need answers in my brother’s death
BLOG	The (prom) politics of pity
BLOG	Dear expectant parent with a prenatal Down syndrome diagnosis
	The photo that broke a mother’s heart
EVENT	Seedlings for Justice
BLOG	By George
BLOG	Guest Blog - Terri Saylor Wilson (aka. Aunt Terri)
	What I Know About Fatherhood Now That I Have a Teen With a Disability
	Don't label people with Down syndrome
	Amusement Park Faces Backlash Over Disability Access
BLOG	The Discourse of Police Brutality - 14-year-old attacked for a "dehumanizing stare."
	Learning disability charity: abuse went unreported for too long
BLOG	It’s Not Your Fault
	My battle with motor neurone disease – Neil Platt's last interview
BLOG	His Name was Alex Spourdalakis
	Frederick County’s silence cannot be the last word on two deaths
VIDEO	Putting the ‘R’ Word To Rest
BLOG	Junior High Tactics
APPEAL	Put a stop to institutions such as Winterbourne
	Taylor woman charged with starving son to death
BLOG	I’m Removing My Prenatal Testing Halo.
BLOG	I’m Just a Mom – Not a “Special Needs Mom.”
	Mom With Disability, Child Held Captive For Years, Feds Say
BLOG	Slippery Slope
BLOG	Where Have You Been, Barbara Walters?
	Mom: Happy noises get New Bedford girl tossed from theater
VIDEO	Some workers at Goodwill paid as little as 22 cents an hour
	Inclusive Schooling: Are We There Yet?
BLOG	Muddying the Water: Alleviating Pain ≠ “Recovery”
BLOG	Community and Identity
BLOG	Bigotry and #Autism Advocacy- The (undefined) line we all think we avoid crossing
	People With Disabilities Open Up About Hate Crimes
BLOG	Stop
BLOG	Love Simply, Just Because
VIDEO	Carly Fleischmann: Video about autistic Toronto teen wins international acclaim
BLOG	Sweet Spots
BLOG	Consent is King
	Special needs assistant cuts protest descends into FF heckles
APPEAL	Have You Contacted the Governor of Maryland?
	Obesity Impacting More With Disabilities
BLOG	Tired of Labels
	Building Networks for a ‘Good Life,’ Even After the Caregiver Is Gone
BLOG	A Cognitive Crip Strikes Back: A Big Picture of the Disability Problem
BLOG	Raising Ghosts
BLOG	We Are Like Your Child
BLOG	Disability and Society’s Role
	The “R-word” has been banished…new criteria for intellectual disability
BLOG	Driven to Distraction

This month:

June seems to have been even busier than May.  Slowly, I've been filling our home on Tumblr:

Downwitdat.tumblr.com

I've been able to welcome new friends on our Facebook page, Group and Twitter as well:

Down Wit Dat on Facebook

Down Wit Dat - The Group
Down Wit Dat on Twitter

 
...And that's the news.  Keep the stories and information coming!

Happy Canada Day to all, both at home and away.