Disability. A Parallel History
03 — Darkest before the dawn
Eugenics was the idea that you could improve the human species by selectively mating people with specific desirable hereditary traits. It aimed to reduce human suffering by “breeding out” disease, disabilities and so-called undesirable characteristics from the human population. Early supporters of eugenics believed people inherited mental illness, criminal tendencies and even poverty, and that these conditions could be bred out of the gene pool.
It seemed like they were bringing back all the old hits from the Ancients Greeks and Spartans.
Eugenics literally means “good creation.” British scholar Sir Francis Galton coined the term in 1883 in his book, Inquiries into Human Faculty and Its Development.
Galton — whose cousin was Charles Darwin — hoped to better humankind through the propagation of the British elite. His plan never really took hold in his own country, but in America it was more widely embraced.
Eugenics made its first official appearance in American history through marriage laws. In 1896, Connecticut made it illegal for people with epilepsy or who were “feeble-minded” to marry.
In 1903, the American Breeder’s Association was created to study eugenics.
National conferences on eugenics were held in 1914, 1915 and 1928.
“….best bred baby. ”
As the concept of eugenics took hold, famous personalities, scientists and leaders championed the cause.
John Harvey Kellogg, of Kellogg cereal fame, the corn flakes guy was a big proponent of Eugenics. He organized the Race Betterment Foundation in 1911 and established a “pedigree registry.”
HG Wells, the science fiction writer stated that he worried ‘defectives’ would outbreed the rest’.
Some of Wells’s science fiction works reflect his thoughts about the degeneration of humanity.
In 1904 he discussed a paper by Francis Galton saying
“It is in the sterilisation of failure that the possibility of an improvement of the human stock lies”
Alexander Graham Bell, inventor of telephone, I told you he’d be back.
Bell’s second chief interest, besides Oralism as we discovered in the previous episode, was the study of heredity and animal breeding. He became an early supporter of the eugenics movement to improve human breeding.
He concluded that ‘deafness was hereditary’, even though his wife and his mother both developed hearing impairments after illnesses.
He warned that boarding schools for the deaf could become breeding centres of deafness.
In 1884, Bell published a paper “Upon the Formation of a Deaf Variety of the Human Race,” in which he warned of a “great calamity” facing the nation: deaf people were forming clubs, socializing with one another and, consequently, marrying other deaf people. The creation of a “deaf race” that yearly would grow larger and more insular was underway.
Some eugenicists called for legislation outlawing intermarriage by deaf people, but Bell rejected such a ban as impractical.
Instead he proposed the following steps: “(1) Determine the causes that promote intermarriages among the deaf and dumb; and (2) remove them.
His views on immigration, deaf education, and eugenics overlapped and intertwined.
He wanted to stop the immigration into the United States of what he termed “undesirable ethnical elements,” calling for legislation to prevent their entry in order to encourage the “evolution of a higher and nobler type of man in America.”
And who do you think said this? –
“The unnatural and increasingly rapid growth of the feeble-minded and insane classes, constitutes a national and race danger, which it is impossible to exaggerate… I feel that the source from which the stream of madness is fed should be cut off and sealed up before another year has passed.”
Winston Churchill said that in 1910.
While we’re on Churchill let jump over to the UK for a minute..
In 1913, the passing of the Mental Incapacity Act led to around 40,000 men and women being locked away, having been deemed “feeble-minded” or “morally defective”.
In the 1920s, teeth and tonsils were regularly extracted from people with mental health problems in Britain because it was thought these parts of the body might harbour infections which could generate mental impairments. Some British psychiatric patients were given malaria to see if it would cure their mental illness.
Rural colonies were established for the so called mentally deficient.
The ‘colonies’ were self-contained small worlds in which disabled people were isolated from the outside world.
In a typical colony, 900 to 1,500 people lived in detached, so called, ‘villas’ with up to 60 people in each. It was thought essential to separate the sexes, so a central administrative block always formed a barrier between the male and female villas. In all of them, patients slept in multiple rows in large dormitories.
There were special villas for ‘difficult cases’ — people whose behaviour was thought to need controlling — and for the lowest grade ‘idiots’. There’s that word again.
These villas were as far away as possible from the entrances to the hospital to avoid ‘offending’ visitors. The ‘idiots’ didn’t work — they stayed in their villas, but as these had verandas, they could be out in the fresh air even in bad weather.
But these colonies, like the old asylums also became dumping grounds for any kind people who had fallen on hardship, and not even mentally ill.
John was sent to a colony in 1920…
“…john had no visitors.”
Villas housing the ‘better class of working patients’ were expected to work everyday and help care for the more severely disabled residents…
“…too damn lazy.”
From the outside, with their separate villas and main building blocks it might have looked like the growing number of holiday camps that were becoming popular at the time but this was far from the community living that the colony administrators had promised.
At the same time in America, separate facilities were built across the country solely to protect society from ‘feebleminded women of childbearing age.”
“…most dangerous person in society.”
At this time Hollywood was entering its golden age. So Eugenics went to the movies too..
Two feature films produced during this era illustrate the cruelty at the heart of the Genetic scare but they also give us a sense of what the general view of Eugenics was at the time.
Both films I’ll mention, were meant to be moral tales for couples hoping to start a family.
The first is a silent film, produced in 1917 called the Black Stork.
“In the lead role a phyciisan, his profession in real life as well, Dr. Harry haseldon.
And a deformed baby.”
The film is based on the actual eugenic infanticide of the child John Bollinger by Dr. Haiselden in 1917. The doctor convinced the child’s parents that their deformed baby would have grown up to be a miserable outcast and that death was this child’s best option as well as in the best interests of society.
A coroner’s jury determined that the child was brain damaged and therefore defective.
Dr. Haiselden was ultimately acquitted by the jury for allowing John Bollinger to die.
The doctor was an outspoken supporter of the eugenics movement prior to this case and, after the publicity made him famous, he brought eugenics to movie audiences…
Dr haseldons eugenics crusade makes him the star of his own movie
The climatic scene
Haseldon refuses the child a warming blanket
He looks at the nurse beside him and the title card reads..
“There are times when saving a life is a greater crime than taking one”
“Dr haswldons campaign aims at liberating American from defective heritage”
The closing title card of the film lays out its message clearly..
“For the salvation of our race and the health and happiness of every individual we must stop at its source the pollution of the blood stream of the nation by passing sane eugenics laws thar would prevent marriages among the unfit.”
The film was re-released in 1927 under the title Are You Fit to Marry?
Several states issued laws preventing marriage among the unfit, in an attempt to stop these people from procreating.
Thirty-three states would go even further by allowing involuntary sterilization in whomever lawmakers deemed unworthy to procreate.
From 1909 to 1979, around 20,000 sterilizations occurred in the state of California under the guise of protecting society from the offspring of people with mental illness.
In 1927, the U.S. Supreme Court ruled that forced sterilization of the handicapped does not violate the U.S. Constitution.
The words in the ruling of Supreme Court Justice Oliver Wendall Holmes, were used in 1937 film called Tomorrows Children…
“…three generations of unfit are enough.”
At the start the film seems to be critical of eugenics policies.
(clip)
The story follows Alice Mason, who wants to settle down with her fiancé Jim and raise a family.
(clip)
This goal crumbles when her parents are forced to undergo sterilization or lose their welfare checks.
Alice’s aging parents are lazy alcoholics and all her siblings have disabilities or criminal ties.
(clip)
She is told that she too must be sterilized: as their family’s corrupt bloodline must end.
Alice’s parents grudgingly accept the court order, so they can keep their welfare.
(clip)
Alice and her fiancé make an emotional case against her sterilization
(clip)
but it doesn’t change the court’s decision.
(clip)
It’s later uncovered by a priest that Alice was actually an abandoned infant, the Masons took in, so she actually isn’t of their blood.
(clip)
The film’s climax sees the priest racing against the clock, to stop Dr brooks from sterilising Alice.
(clip)
They get through to the doctor in the nick of time and are able to stop the procedure.
(clip)
So the moral of the story was — sterilization is ok, but just make sure you don’t sterilize good people by mistake but that’s ok because God won’t let that happen.
AKA Priests are heroes.
Some people did object to the movie though, the state censor board banned its first release in most states but maybe not for the reason you might think.
Tomorrow’s Children broke industry standards because it depicted alcoholism and deformed children so not directly for its Eugenics message, which most were fine with.
In 1942, the supreme court ruling on forced sterilisation was overturned, but not before thousands of people underwent the procedure and many individuals states continued the practice for years.
It’s not surprising, against this backdrop of intolerance and aggression towards the disabled, that if you had a disability, and you could get away with hiding it.
Then you would, right?
The President of the United States at this time, was disabled. But if anyone knew this, that would mean the end of his political career. Or so people presumed anyway.
President Franklin Roosevelt’s legs were paralyzed from polio, but the public never saw his disability.
Out of 35,000 photographs of President Roosevelt at his Library, only two show him seated in his wheelchair and the leg braces he wore are very hard to spot in any of the pictures.
Biographer, hugh gallagher
(Clip)
He also developed an elaborate method of getting around by having his assistants hold him in a way that made him appear to be walking.
Journalist, chambers Roberts
(clip)
There’s a now famous story, that when Orson Welles was dining at the White House, President Roosevelt said to him, “You and I are the two finest actors in America.”
As horrific as the intolerance, aggression, forced sterilization and segregation was in America, Adolf Hitler’s administration brought the treatment of disabled people and Eugenics to a whole new low — Genocide.
(clip)
Eugenics was already popular in Germany before Hitler.
Hitler didn’t come up with the concept of a superior Aryan race all on his own. He referred to American eugenics in his 1934 book, Mein Kampf.
By 1940, Hitler’s master-race mania took a terrible turn as hundreds of thousands of Germans with mental or physical disabilities were euthanized.
As explained by Profess bob Jackson of edith cowen universiry…
“..and then they were used on the Jews.”
After the unspeakable atrocities of Hitler and the Nazis became widely known and condemned, eugenics quickly lost momentum in American and everywhere else after World War II, although forced sterilizations still happened.
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The impact of War in the story of Disability can’t be overstated. Wars literally make disabled people. And they do it in huge numbers. When a war ends, it forces society to confront disability head on. Where once disabled people weren’t so visible, after a war a community will be inundated with veterans returning home with life changing injuries — Disabilities, physical and mental.
An estimated 20 million people became disabled by the end of WW1.
In the UK alone around two million came home with some level of disability: over 40,000 were amputees; some had facial disfigurement or had been blinded.
Others suffered from deafness, tuberculosis or lung damage caused by poison gas.
Walter Clarke recalls…
“…realised what it was.”
There were thousands of cases of shell shock, diagnosed today as post-traumatic stress disorder.
This is Bertrum Stewart…
“…ended up in a lunatic asylum.”
The return of the disabled ‘heroes’ to the UK after the First World War caused some attitudes to change. These people were heroes who had sacrificed their bodies for the nation so they had to be cared for.
There were major advances in plastic surgery and prosthetics. Ex-servicemen with physical and mental damage were treated with new exercise and fitness approaches.
Employers were urged to take on disabled workers and at the same time sheltered employment workplaces sprang up, including the British Legion poppy factory in south London.
(clip)
After WW2, in England, public concern once again shifted to the 300,000 ex-servicemen and women and this time civilians who had been left disabled by that war.
Changes in the treatment of disabled people, spurred on by a patriotic sympathy for disabled servicemen and women also greatly benefitted disabled civilians.
The 1944 Disability Employment Act promised sheltered employment, reserved occupations and employment quotas for disabled people. Initiatives to restore the fitness, mobility, daily living skills and morale of disabled servicemen and women spread to the rest of the disabled population.
(NHS clip)
The new National Health Service extended rehabilitation services to workers disabled by industrial accidents.
In 1946 The Invacar company is founded.
The company went on to win a government contract to supply transport for physically impaired people throughout the 1950s and 1960s.
(invacar clip)
— —
Parents’ movement
After two World Wars, the end of each highlighted and humanised people with disabilities…
Particularly people who suffered injuries that lead to disability…
But the question of how to treat infants and children, born with disabilities was still being debated.
In America Public health nurses would assess young children in their homes and refer them to doctors…
This clip if from and instructional video for Public Nurses
(clip)
Doctors continued to urge parents to place their children in institutions regardless of the conditions.
Institutions began admitting younger children with more severe disabilities.
During the post-war baby boom in America, having a “handicapped” child was seen as a burden to the family. More and more children were institutionalized, and not just children from poor families.
Frustrated and angry over poor living conditions and the lack of community services, parents began to organize and demand better services for their sons and daughters.
These organised groups started off small, meeting in neighbours living rooms.
This is a promotional video for NARC, National association for Retarded Children.
They later change their name for ARC for some reason…
(clip)
The efforts of a few groups of parents, scattered across the United States, led to a strong, national movement of parents who declared “The Retarded Can Be Helped.”
In the 1960s, a parallel struggle — the civil rights movement in America also inspired disabled groups to take direct action against discrimination, poor access and inequality.
The parents’ movement had begun.
(clip)
After years of treating people with disabilities with guilt and shame, people began to speak about their family members with disabilities.
President Kennedy’s sister, Rosemary, had a mental disability. Rosemary lived with her family until she was in her twenties and enjoyed the same lifestyle as her brothers and sister.
Like most families during this time, the Kennedy family did not openly discuss having a sibling with a mental disability. By 1962, however, this changed. The parents’ movement had effectively brought disabilities out into the open.
Eunice Kennedy Shriver wrote an article about their sister Rosemary and the adjustments that the family made. The article appeared in the Saturday Evening Post, was read by millions of people.
It might have also prompted Eunice and Rosemary’s brother, president Kennedy to speak up about mental disability in public….
(kennedy clip)
President Kennedy went on to roll out several actions that benefitted disabled people…
(kennedy clip 2)
Eunice went on to found the Special Olympics. An international sporting event primary for people with Intellectual disability.
Eunice wanted to show what people who are often written off, can do, instead of focusing on what they cannot do.
(clip)
Here she is opening the first Special Olympic games in 1968.
The first time the Special Olympics was held outside of America was in 2003, when it was held in my home country, Ireland.
(rte clip)
I was in secondary school at the time. I distinctly remember watching the glitzy star studded opening ceremony, that included Mohamad Ali, Arnold Swartsanegger, Bono and Nelson Mandela.
(mandela clip)
But in my opinion the most significant aspect of the event was the host town programme.
The 7,000 athletes, 2,000 coaches and staff from 158 countries were put up in accommodation spreading across. The whole of the Island of Ireland.
Each country’s team was hosted by a town or village.
170 cities, towns and villages participated.
The largest travelling delegation, the USA, stayed in Belfast.
Portugal went to the Aran Islands
Tajikistan took up residency in the village of Abbeyfeale
Turkmenistan stayed in the village of Bruff
Pallasgreen, a tiny village in Limerick with a pop. 500 hosted Kyrgystan.
My home town, Kilkenny hosted the German delegation.
I remember a large group of us went to the town centre for the team’s welcoming ceremony. Events like this, large and small, were repeated in all the host towns.
Most of the delegations stayed in hotels but in the smaller villages, delegations were put up in BnBs or taken in by local families in their own homes.
So the Special Olympics got to touch way more Irish people and they felt way more involved and invested in the event than if the athletes all stayed in a centralised location.
It reminds me of the spirit of Gheel, the birthplace of community care. During the Special Olympics in Ireland people with disabilities were integrated into the communities.
The total anthesis of how people with disabilities were treated for years. Shipped off. Segregated and isolated far away from the rest of the community.
Unfortunately, in the 1960s that was still the case, especially in America with its massive institutions.
After President Kennedy was killed his brother Robert took up the mantle and started campaigning for disabled people.
In 1965, Senator Robert Kennedy, accompanied by a television crew, toured the Willowbrook State School in New York and described what he saw during his visit.
(clips)
In 1966, Burton Blatt, a professor at Syracuse University, and Fred Kaplan echoed Senator Kennedy’s attack on institutions with their photographic essay entitled Christmas in Purgatory.
Using a hidden camera, Blatt and Kaplan captured life inside the public institutions.
The photos they took are shocking and not for the fainthearted.
The crumbing walls, rusting or broken fixtures, dirty floors, rooms with broken beds, with no blankets, Babies abandoned in cribs, children self-harming with open wounds, adult patients walking around naked clearly malnourished.
It looked more like a concentration camp than a care facility.
The following year, their essay was published in Look magazine, and received a shocked reader response.
In this essay, Dr. Blatt declared that “there is a hell on earth, and in America there is a special inferno — the institution.”
Dissatisfaction grew as reporting made clear that the institutions were failing to meet even the most basic needs of the people they were intended to serve.
But the exposés of the 1960s were pretty much just forgotten about until the next decade.
In 1972 ABC News reporter Geraldo Rivera visited the Willowbrook State School on Staten Island in New York, the same facility visited by Robert Kennedy in 1965.
The programme, Willowbrook: The Last Great Disgrace, aired on network tv and was seen by millions of viewers. On the programme, A former doctor at the institution reported that conditions had only become worse since the 1960s.
The institution was chronically understaffed and underfunded..
The exposures of the horrifying realities of the institutions prompted advocates to sue state governments on the grounds that their confinement and treatment of residents was unconstitutional.
Finally, many US states decided to close their institutions down and settled the lawsuits against them by agreeing to detailed, court-monitored plans to shift residents to smaller facilities and their own communities.
In 1975, when a new federal law required that all children with disabilities be provided a public education, the populations at institutions began to plummet. Now that they could send their children to school, parents brought them back home.
Independent living
We’ve seen how for most of our history, people with disabilities were segregated as a means to care for and control them.
In the 70s the concept of independent living developed.
It was the opposite to institutions.
It’s a move away from dependency on parents or professionals.
Essentially, independent living means the opportunity to make decisions that affect one’s own life, being able to pursue activities of one’s own choosing.
Independent living does not necessarily mean living alone.
It has more to do with self-determination: making choices and having access to appropriate services.
Here’s Ed Roberts, who most consider the father of the independent living movement.
(Independent Clip)
—
Unfortunately, barriers still exist for most people with disabilities: barriers to employment, public transportation, social and recreational activities, and to many other aspects of everyday life.
Some barriers are obvious, like an un-ramped entrance to a building, the lack of interpreters or captioning for persons with a hearing loss, or the lack of brailed or recorded copies of printed materials for persons who are blind.
Other barriers are less obvious but frequently more damaging…
Stereotypes play a big part in hindering people with disabilities.
Stereotypes that depict people with disabilities as objects of pity or scorn, result in low expectations of what people with disabilities can achieve.
This is because the medical model of disability, which emerged in the 18th century, led experts to perceive and treat people with disabilities as pitiful and child-like.
Disability was then viewed as a medical issue that required the services of trained professionals. People with disabilities were patients who needed to be cured, and physicians were the professionals and primary decision makers. This model fostered dependence upon professionals.
For many people with disabilities, the message was to overcome, rather than accept, a disability- The model of heroic adjustment. Triumph over adversity. We all love those Disney style stories.
So people with disabilities had the option of being pitied or the other extreme — of being heroes who overcame their disability entirely or achieved something in spite of their disability.
Take President Roosevelt for example. It was only after he died that the general population learned of his disability. Since then he’s often cited as someone who overcame his disability to achieve great things. But it seems like the biggest obstacle he had to overcome was the public’s perception of his disability not the disability itself.
And by hiding his disability he was only perpetuating the stereotype that people with disabilities are weak.
Point is, attuites don’t change ove night. It takes time.
But here’s a final warning from Professor Robert Jackson…
“…”
To finish where we started, with the Paralympics…
The Paralympic games in London in 2012 was a huge leap forward for how people with disabilities are perceived by the general public.
London 2012 had a cumulated audience of 3.8 billion and was broadcast in 115 countries and territories.
Channel Four, the official British broadcaster dedicated more airtime to the games than any other broadcaster. And they also made space for new TV presenters and commentators with disabilities, a lot of which stayed on television long after the games ended. This was great.
Advertising and television coverage for London para 2012, broke down the stereotype that people with disabilities are helpless, instead they were depicted as tough, strong, athletic
Channel 4 rolled out a huge glossy ad campaign.
Tough Para athletes took centre stage.
The ad focused on the more violent or high impact sports.
The tagline of the ad announced “Meet the super-humans”.
My only question about this is, why are they super-human?
Is it because they are elite athletes? So all athletes are super human?
Is it because their hi-tech prosthetics appear to enhance their abilities?
Is it because they are not just athletes but they’ve also overcome adversity?
It’s a thin line to draw between appreciation and that old hero stereotype but I might be overly critical here, I freely admit that.
My point really, is that calling people heroes or praising them for overcoming an obstacle doesn’t help them.
I remember when I was a kid at an ‘able bodied’ or typical primary school. When I finished in that school, as in graduated, I was called up and presented with a special award at the final year assembly.
It was called ‘the brave warrior’ award.
The idea being that I was given this award for overcoming adversity during my time at the school. And while it was very well intentioned. It actually just embarrassed me.
Why go to the trouble of giving someone an award for overcoming an obstacle, why not just work to remove the obstacle in the first place? Surely that does more good.
Of course this type of thing is by no means exclusive to disability.
When the public were encouraged to clap outside their doors for medical staff and carers. That doesn’t really help anyone. I’m sure carers would rather Improved work conditions and better pay, rather than being told they’ve done a great job in spite of their conditions and pay.
But anyway.. We’ve finally arrived at the present from our trip through the history disability.
It’s a struggle that’s been going on in parallel with all the other struggles throughout history.
It’s been a long and slow journey. As we’ve seen, sometimes it was one step forward two steps back. And things could easily slip back again… if we’re not careful.
What I’ve realised is that it hasn’t just been a journey of acceptance and empathy but ultimately it’s about self-determination — having control of your own life, that’s something that was denied to the disabled community for centuries…
From ancient times, where disabled people were exposed and vilified — they were being controlled by superstition…
Then disabled people were put in Asylums, controlled by religious orders
These morphed into Institutions controlled by the state
And forced custodial care run by professionals
Finally parents had enough and spoke up for their children, demanding they be allowed to join the rest of the community again
And now disabled people are speaking for themselves, they are the experts, in charge of their own care and their own lives.
And it only took a couple thousand years…
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This has been a story for Yarn podcast dot com.
Written and ranted by John Roche.
If you’ve made it this far, thank you, you deserve an award — ha!
Research for this episode came from so many sources — too many to mention here but I’ll put links to them all in the episode description.
Take care!
