[HMD Lecture, LHC Auditorium, Dec 12, 2006]

[Audio noise throughout lecture]

[Dr. Elizabeth Fee:] Welcome to the History of

Medicine seminar series. I'm delighted today we

have Laurie Block with us. She has been visiting our National

Library of Medicine and has helped us a great deal with materials

on the subject of disability.

Laurie Block is the co-founder of Straight Ahead Pictures,

nonprofit media production company. Her work focuses largely on how

questions about who is fit and who is not in American Society are reflected

and sometimes shaped by the media.

In fact, fiction and documentary. Block's first film Fit--

Episodes in The History of the Body, a feature documentary about the

cultural history of the idea of fitness,

won many festival awards and

was broadcast nationally on PBS.

She wrote, narrated and with Jay Allison,

produced the 4 hour NPR series Beyond Affliction,

the disability history project. Which won the Robert F Kennedy

Journalism Award for 1999. She co-produced Remember My Name,

a short film about the restoration of the cemetery at Danvers Massachusetts Hospital

for the mentally ill. With Karen Brown she produced Trauma & Recovery: [corrected]

A Cambodian Refugee Experience,which won the Daniel Short Journalism

Prize and the first place Public Radio News Directors Award.

Laurie Block is the founder of An Amazing Thing,

the online disability History Museum.

She and Straight Ahead Pictures have received numerous grants for disability

history media projects including award from the American Antiquarian Society,

National Endowment for the Humanities, the MacArthur Foundation and many others.

Currently she's producing a major NEH funded documentary biography

called Becoming Helen Keller and I believe she's still looking for money,

so if any of you have a lot of it, you can talk with her afterwards.

Her presentation today is entitled Cure and Contempt,

The Exhaustion of Benevolence, Laurie.

[Applause]

[Laurie Block:] Make sure that I click this on right.

[Chatter]

So OK. Fine-- thank you.

[clicking]

Anybody wants to come down they're very welcome to, but I would really,

really like to thank Elizabeth Fee, Paul Theerman, both of you, for your interest,

your faith in a fledgling enterprise, patience for work to be completed.

I'm going to thank some scholars, some are friends.

Some are known to me only via the page. Peter Hall, Mary Klages,

Paul Longmore, David Morgan, Richard Davies, Scott Cutlet,

George Weiss and Marty Pernick. And to my husband, who's here? Thank you for your insight,

your willingness, and your grace. My talk includes some abrupt shifts,

and perhaps I will seem to meander, wander, but I've tried to keep my eye

on the need to weave these elements into a sensible tale by its end.

The fellowship is currently being advertised for a year's study at Princeton,

and I wish I could apply. The theme is FEAR and the request

for proposals names all kinds, but the one I would propose is perhaps

the subject I'm discussing today. This could be described as the Fear of Fate.

I live deep inside a complex story and come to that subject today as a participant observer.

So, having begun to speak in mythic terms, I want to say a few things about

seeing as a form of sacred practice. Seeing is a sacred practice in many religions.

More than a passive reception of sense impressions used to assess the

nature of material objects in the world and the act of sacred vision a selective constructive act,

makes order, remembers, engages the material world and various dynamic relationships.

The importance of seeing as a sacred practice in late medieval Catholic

piety becomes more vivid when we realize that just to look upon

relics afforded forgiveness of sin. Sacred seeing practices are

aptly described as visual piety. They are forms of orthopraxy ritual practice,

not orthodoxy. The tenants create structures of religion. The practice of visual piety is

different than the institutional instruments ordering faiths, though of course all these factors,

including the social and historical life of the representations, are engaged in the performance

of sacred gazing. Darshan is a useful Sanskrit word.

It describes the ritual act of seeing

with reverence and being seen by the deity and interactive encounter. In Hindi tradition,

the image in a temple or shrine, even in domestic settings, has dynamic power.

So too does the devote gazing upon the deity. Many variants describe how these

powers engage each other. But the relations of power are different

from any western iconographic practice. In a Hindi context, the deities image, statues too

are living things. The devout see the deity through the image. The image facilitates encounters

with the deity. The image is recognized as a living thing capable of mediating

the viewer and the unseen. The image has the power to feel, [Audio disruption]

feel it is alive even if the statue is made of wood, lime paste, concrete.

Hindi images come alive through a series of rituals that establish or bring the God or goddess

into its material presence. When the eyes get painted onto the image of statue,

that's often when the images life begins. But the relations are quite complex and

unlike the unlike icons in Christendom. Hindi religious images are infused

with the life power of their deities. According to medieval legal literature.

Indian medieval literature central images

can own as property the temples they inhabit.

Sometimes eminent images rule kingdoms, with human sovereigns acting as

subordinate ministers under their command. So Darshan describes a complicated

interactivity and engagement with images,

where the visual object itself emits and owns

power that acts upon the gazing beholder. Visual piety always involves this

interactive engagement and always a suite of beliefs governs the

relationships between deity and devotee. This ritual practice of focusing

both eyes and all sense of the word, physiological, the mind's eye,

and heartfelt space by using images

to obtain an experience with deity is a devotional gaze.

The devotee using a Saints card to facilitate prayer employs Darshan

to engage with the revered. So here's some different kinds

of religious images.

What is engaged in this interaction?

There's always a covenant of belief involved, and I'm going to come back to that phrase,

covenant of belief. But first, let's look at Saint Christopher.

Saint Christopher crosses the river. Always he's pictured crossing the river all

the way back to the Byzantine era. Christopher the name means a burden carried.

Saint Christopher always carries a child and the child is Christ. And because to the believer the

boy is he who as God suffers, he who takes within his body spirit, the world sins,

the burden of the child gets heavier and heavier. The staff,

the Holy Spirit and the viewers faith support him across this passage.

The believing viewer empathizes with the

image and identifies with the saints caring or maybe the Christ child.

Perhaps the devotee wears the image as an amulet for protection while

traveling or put a little statue on the hood of their car or keychain.

The power of consolation, relief of tension,

a sense of protection is offered in exchange. Maybe hope is fostered.

Relief from suffering is what the man made image of the Sacred Heart, the Virgin Guadalupe,

works upon the devout viewer. There are images to a cause-- Saint Rita and Saint Jude.

This kind of engagement with the material everyday object image of a saint

does not change the Catholic iconic practice from the middle evil does not

change in Catholic iconic practice from the medieval period to our early modern age.

When we look at, you know, a beaded curtain of the Virgin of Guadalupe in somebody's house,

it's not just folk art or kits, aesthetic taste, taste.

What binds the parties engaged in a devotional gaze is a covenant of belief,

and that's a phrase I borrow from David Morgan. When seeing within the frame of a covenant of belief,

we employ not our reasoned, rational, disinterested assessments or

ideas about the beheld object.

Instead, conviction, emotion, belief, drive

and shapes the apprehensions and encounters, but the counters binding the

beholder and the beheld object. Covenants of belief operate in a religious context,

but the phrase usefully describes the visual behavior and social dynamics generated by

icons associated with patriotic nationalism, the flag, military regalia,

memorials, Purple Heart Memo, Purple Heart medals. They are operative in the use of

pornography. The generation of celebrity, and some advertising. I'll stick to religion and those

with incurable conditions today, and track what happens as settings

change and sacred references drop out of visual appeals for benevolence,

which always describe ways to understand

suffering, imagined or actual. One aside,

even an iconic faiths employ visual piety

in relationship to material artifacts. Mazals and Jews may not deploy

images and idols of their God, but their ritual practice engages

the text itself as if it were image. Holy words decorate with calligraphic gay grace.

The tiled ceilings and carpeted floors of mosques, The Ten Commandments written on

parchment wrapped inside of Mezissa, gets nailed onto the doorposts of Jewish homes. My dead grand,

my devout grandmother's ritual practice upon entering her home was to tap the mezuzah,

then kiss her fingertips as she entered after work. The artifact and her behavior

function to make the passage sacred, the practice being a ritual,

as if the mezuzah was an amulet amulet demarcating a change of space and sensibility.

Visual piety as a practice, inhabits everyday life.

But our encounters with the extraordinary, be it an event, subject or object,

are also governed by ritual, practice and conventions.

Nowadays we tend to naturalize the

power of the extraordinary by use of constantly repeated images.

We ritually, through this repetition, established their ordinary,

ordinary, everyday presence in our lives-- an abrupt shift. Nowadays,

in the early weeks of a woman's pregnancy, it has become a natural part of

the ritualized initiation into motherhood to take a prenatal ultrasound test of the child.

We call it an assessment to make sure that everything I E the baby is well.

It happens in pictures with measurements. Usually all is well and the

freshly made image of baby A gets put on the refrigerator passed around among friends and family.

Much amusement occurs if there are twins? It is a joyous process.

We do not often publicly discuss what happens if the tests reveal a problem. Down syndrome,

a neural tube defect, or if the parents to be decline their parenthood choose to abort.

Media reports describe the majority population puzzling over couples who choose to conceive,

only children with specific minority population genetic traits

such as deafness or smallness. I learned as a pregnant woman at 9 weeks via ultrasound that

I was to be a mother of twins, a huge surprise. At 11 weeks, an expert with multiple birth

annual procedures explained to my husband and myself that if a problem was discovered with

one fetus and not the other, I would be able to choose to have one, none, or both the children.

No history of birth defects were known to be in either of our families.

I was then 33 years old, quite healthy, and these children were wanted.

I had chosen at other times to not have children to afford, largely because I had no partner.

I believed at least to start two parents were useful, and the desire to love the child was

essential if I were to take on the risks, the work, the joys of another

being a new generation. These twins were consciously conceived with that hope.

So of course, we imagined one child. Choosing between fetals twins seemed unethical.

It would undermine overthrow all the previously all the previous existential

decisions I had made about why and when to have or not have children.

I strongly believed I would regret making such a choice, even more than any problems

that could arrive. Couldn't a car accident or some illness caused some terrible thing

to happen in some unknown future? Anyway, we chose not to use amnio. At 13 weeks,

a problem was discovered with 1 twin via ultrasound. At 15 weeks, a specialist describes spina bifida

as the diagnosis. Then, after outlining what that diagnosis included,

she told us ours was a worst case scenario.

We naturalized the extraordinary with images, measurements and taxonomies.

The repetition of pictures and phrases eventually makes them commonplace.

We take ultrasound diagnostic views of our future for granted. But when we read into the present

for signs about the future, how far away from a trip to the Oracle reader are we? What is the worst?

What is a worst case scenario when said to a pregnant woman with many months ahead of her,

I would say it's a maternal impression. No matter who you are across race,

ethnicity, creed, class, gender. It is a turning point.

Mediated via images emitting significant power. Images of the real, not art.

But something is happening here in a sacred space. When a worst case scenario unfolds

unlike the discovery of a healthy child, the event announces that the fate of the parent has changed.

Announcing the child is healthy does not require the professionals making the news to attend closely

to the values held by the parents. In a difficult situation,

covenants of belief are engaged. My two daughters, twins, are now 19 years old.

Each goes to college. Though their future holds quite different possibilities. One has spina bifida,

one does not. Why? Worst case-- there's no doubt spina bifida is a

complex and difficult condition. It was not possible to predict if the

condition of baby B's condition would further deteriorate before birth. She would need surgery soon

after and more thereafter. The range of outcomes were many, and the outcomes were not predictable.

But the pronouncement worst case scenario sounds to me now, with the help of notable hindsight,

like stories told by parents who are in their 70s and 80s, parents who, without the aid

of prenatal diagnostic techniques, heard doctors pronounce their children with

Down syndrome to have a mental age of three. That nothing could be done for

their child with cerebral palsy. That home was worse and institutions perhaps best.

These medical forecasts, like the statement said to me,

contained significant presumptions and little critical compassion. Worst that case scenario.

The emotional power of such a statement, coupled with our technology's accuracy,

creates a context as if the Oracle priestess had announced

the rest is inevitable and upon you and your children

for a generation to come. To be on the receiving end of such news is a traumatic experience.

However, it is critical to recognize that a traumatic experience is actually the

turning point moment in a longer narrative that will unfold over time.

This longer lived story unfolds as a process. Still,

the turning point meant moment when you learn to come to know your fate has changed.

Will persist durably in memory. This is true whether or not

you choose to have the child. A prognosis unfolds.

It is a process expressed uniquely within

each individual over a period of time. Living with an incurable condition can

happen happily across much of a lifespan. The condition performs within its

categorical range, a describable pattern. That's the diagnosis. Along the way

the incurable might be happy or sad, have the flu or not be healthy,

wealthy, become wise or foolish, experiences different than those described by a diagnosis.

This might seem obvious, but I don't think this concept is widely shared or understood

emotionally by professionals, or patients for that matter. In other words, most of us here

through much of the 20th century. Why, "Worst Case?"

What prompted my doctor to spontaneously make her highly

charged emotional ontological assessment of my situation, despite all of her training to

be value neutral, disinterested, so to speak, in tone? A worst case scenario projects

into the future of fixed outcome. It is a judgment, a tragedy of fate, not a comedy of errors.

Something must be endured, suffer till it is over in the context suggested here,

it implied no enjoyment, pleasure, typical parental satisfaction, no resilience or hope.

It is also a statement about choices perhaps. I was in the second trimester and the fact that this

doctor knew the choices available were dangerous or nonexistent may be prompted her severe response.

To keep things honest, living with spina bifida is not easy. I do not know what I would have done

if I had been carrying a single child. I do not believe we need to insist

that every fetus with a neural tube defect need to be born. I do not.

I do not believe, but I do believe. We need to be able to talk about

abortion screening and finding children with problems openly, and to hear from people who have

had a wide range of experiences. Do not hear this tale as a gothic report.

Though my daughter's diagnosis certainly shapes her and our family's existence and

much difficulty was sometimes encountered, her life and ours together with

her sisters is more like yours and your children's than not.

Ian Hacking describes how a categorical name, a diagnosis assigned to an individual,

interacts with daily existence over historical time in a looping effect,

a process he calls dynamic nominalism. Anyone with a consequential diagnosis

like spina bifida constantly experiences, dynamically and interactively,

the intersection of their identity and the thick fabric of the world

an incurable condition generates for the person who possesses it, especially if they are a growing

child and by extension, their family, innumerable interactions with society's welfare, medical,

educational and vocational bureaucracies. An incurable condition initiates,

and often continually requires, constant engagement with how popular and

highbrow culture mirrors our experiences. Watch a melodramatic disease of the week movie.

Learn to drive a car with hand controls, be given a dollar, or watch a stranger give your child

money as she makes her way down the street using braces and crutches. These things happen.

These things happen in the late 20th century, the early 21st. Learn to drive.

They have happened to us not once, but again and again. The sum of such,

the sum of such exchanges shapes how they able think about the disabled.

How the disabled individual's identity develops. How a family's experience gets shaped,

How the disabled think about the able. Now for the looping effect.

We can see some patterns to how the experience of life lived within an incurable condition in North

America was understood, imagined, and how these have changed.

If we look at the illustrations and narratives used in moral tales produced in 19th century

Sunday school track literature. These images draw from an earlier sacred draw from earlier

sacred Christian traditions. And the arc of this talk we will watch

and briefly listen to how affliction narratives become pure narratives.

And I want to call your attention to the perspectives periodically articulated by those living inside

the experience of disability versus those outside describing it. The 19th century American Protestant

Press published vast numbers of moral tales for children, and these included stories about blind,

deaf, invalid, and feebleminded children. The insane appear in these stories too,

but they are usually adults and for and mostly females.

The genre prevailed from the 1820s and to the 1870s with only a few changes.

The stories appear in small chat book used by Sunday school teachers

whose job it was to instruct about how to live a virtuous life. The books were also used to

teach literacy to immigrants, African and Native Americans. Commercial publishers would eventually

absorb the genre and then it becomes secular children's literature. These later secular stories

are more sentimental, but the Protestant religious logic about suffering,

how to be in community with or bear as a child a life lived with

incurable conditions of the body, would largely remain intact. The Secret Garden is a

one of the good example. Heidi is another. Affliction narratives prescribed

behavior the proper way to act between able and disabled individuals.

It works both ways. The prescription, the prescriptions are for both sides.

Able and disabled children are taught. The cause of the incurable condition is natural.

It is not divinely fixed and unpleasant behavior of the disabled person must

be accommodated generously by the able bodied. This benevolent behavior earns.

the able bodied a benefit, a chit that raises them up closer to God, or at least helps them earn a

pat on the back for being good by loved ones here on earth. The disabled person must accept

submit on complaining uncomplainingly that their condition is God's will

and that it's cause is not divine. Sometimes that discussion is carried

on as one about inner or outer beauty. God, of course, is not interested in vanity.

It's inner spiritual qualities that are most revered and transcendent.

But even now you can really feel patience the hunchbacks, social pain. This is actually comes

from a little story about patience. Disabled person must be thankful

for the help given by peers, anger or displeasure at being the object of others

goodwill or pity is never allowed. The controlled response,

measured feelings are required by all,

always and no matter how and that is demanded,

no matter how grim or condescending the situation may be.

Almost no attention is directed to the environment, how it might,

how it might be changed or altered to limit the disabled person's possibilities.

So sometimes the ingenuity of family, friends, even the disabled themselves,

create what we would call assistive technology. Tools to hold up books,

to move people around, etcetera. Learning some craft or skill like

reading and writing or basket making can make a person useful. Economically productive. Friends

are a comfort. Education is the ameliorative method, rarely medicine.

If someone is really in bad shape, and that's always true of the kids with

feeble who are feebleminded in these stories. If somebody, and it's usually true of the insane

women as well, but if they are in really bad shape, inevitably they die and heaven

is their reward. All the work in these stories is is internal and individual responsibility.

The world described is very Protestant. Life is woeful with these afflictions,

but everyone here on earth has a role. All humankind, Protestant that is,

belongs to the earthly community and should

be loved thanks to the great higher power. But something critical has happened

to that quality of loving, benevolent and consoling response. Unlike with Saint Christopher

seen previously, empathy is overtaken here by sympathy. So each one of these images takes its

cues from older icons of Saint images. Here, roads get replaced.

Here roads are replacing the river crossing of Saint Christopher, and the people are human,

even if their features are idealized. The Tiny Tim is a movie still from the 1930s.

18 versions of Tiny Tim of the Christmas Carol have been made in English films since the

beginning of the since about 1905. This one's, like I said, from the 30s.

Tiny Tim declares he doesn't mind being stared at when in church because his

fellows will be reminded of Christ's work. Tickins looks backwards with this,

stating the empathic identification thesis.

Tim's Amigus Healing Healing Scrooge. And of course,

little Tim includes everyone in his famous declaration of Universal Fellowship.

The boy up to the far left, carrying his friend is simply

shepherding and sharing fellowship. John Ellard, who is in the middle,

was a real newsboy in Philadelphia who had a hunchback and scoliosis.

He is his life story is described in a

memoir written by the minister who founded

the first Newsboys home in Philadelphia. And of all, I've read many of these stories,

and John Ellard is the only one where somebody quite defiantly says, why should he be glad for what

God had done for him? What good was this burden he had to endure? Yeah, when Ellard is sick and

dying near the end of the story, of course he comes to the right vision and accepts Christ into his

heart and is consoled and comforted. The imagined Christ in these stories is rarely pictured.

We do not see the deity as a person suffering on the cross. No visions of wounds are offered up.

The ideal model of Jesus presented to the young in these tales exemplifies

a quiet but caring approach to those who might suffer. This is the world of the Good Shepherd.

We'll go back. This is the world of the Good Shepherd.

The shepherd feels sympathy to the sick, to the immigrant,

to the sheep and animals below him. There is condescension in the oldfashioned sense of the word,

a looking downward. But this look cares in a pastoral,

paternal way that's that stops just short of downright irritating.

And if the subject in one of these stories for children is from outside the realm

of our Protestant nation. The emotional approach can cross over to righteous indignation

of the most vitriolic variety. The poor Irish serving girls in these

stories farewell only if they convert. But this benevolent help to lower beings is doubleedged,

and not to be dismissed or sneered at entirely, though its imperialist implications are transparent.

The friendly visitor shepherds who teach the children to knit very patiently,

to weave baskets, read letters or make rooms, who provide simply comfort and

consolation are indeed helpful. The jobs or ability to do simple tasks like feed oneself are real

parts of the economy and the time that they are written in. Only when you see basket weaving

and handmade room making still being offered to disabled veterans in rehab at the end of World

World One will the approach begin to seem utterly ludicrous. By the mid 19th century,

a parallel stream of tales about disabled people begins to flourish,

and these being chronically misshapen, impaired or dependent is a colder fate.

The stories tend to the sensational, the Gothic, the useless invalid becomes a tragedy,

a victim defective or deviant outcast, a monster of various proportions.

Measurement of everything from clothing patterns to the murder rate to the relation of routed chin length

introduces a statistical modeling of our collective humanity. And in these tales,

the child who has a disabling accident begins to have a predictable and inevitable fate.

Who will be imagined to grow up a no good nick and evil landlord, embittered mother or father.

The disabled newsboy with a limp or blind madrigal will live outside,

apart from the mainstream community. These beggars, thieves and weirdos are not to be invited home.

They contaminate even their siblings become unworthy.

But even when eugenic rhetoric reached a peak the majority of disabled young

lived with their family and not in institutions. They are loved and cared for.

They will at times dismay their relatives.

They are included in studio portraits. When no family was available to do this,

care if someone's parents became unemployed or alcoholic or abusive, or just disappeared.

If the child had significant learning or emotional problems, well,

the home for feebleminded children. Might, just might be where they ended up.

This might turn out to be a refuge for the child. Or it may be hell on earth.

Little in the way of civic, sacred or medical professional commitment provided the secure

budgets and oversight and ingenuity such places sorely needed as the 20th century progressed.

Umm.

[Paper rustling]

Both the sentimental and the Gothic tale about kids and adults with disabilities

cross quickly into silent movies and both shape the rhetoric used by the

new civic community service charities of the 20th century. To raise funds

these organizations incorporated the moral tale narrative structures used in Sunday School lessons,

but applied them to the work that they did. This work helped build the modern

healthcare infrastructure. Just look one day for the old plaques stating donor names in a hospital or

a clinic and you will find these men and sometimes women and their club

names and their organizations screwed on doors to libraries, chapels,

operating rooms, gift shops and cafeterias. They're everywhere.

Maybe not here at NIH, at NIH, but go to a midsize urban or rural

hospital anywhere in our country. Be sure to pick up. Be sure to pick one that's been

around for a while and you will see the Lions Clubs and Kiwanis and maybe even if you're lucky,

the Daughters of the Nile.

This is a direct mail postcard note from

1923 from Community Chest thanking a donor,

and if they're pro forma, few of these, but they all have the same reply.

I know that you are happy to have done your share to relieve suffering.

All your friends and neighbors should have the same privilege.

Will you help to extend the same privilege? I am glad you are one of those

who cares. It's a soft touch. This is the period when medical diagnosis

shifts rapidly to modern vernacular, when silent newsreels show

off new hospital facilities. The cameras feature details like the names of medical specialties,

divisions of new knowledge. The captions proclaim these places harbors of new hope,

where the weak are saved. And yes, many old problems did find new medical solutions.

Public health does solve problems, but the true incurables go to rehab hospitals,

a different kind of place altogether. Hope is there, but the afterlife is less glorious.

These places are often backwaters where old 19th century

religious rhetoric where the old 19th century religious rhetoric of affliction

mixed with eugenic hopelessness, and this flourished long after World War Two.

Secular service clubs proudly boast about their worthy words. The members are mostly middleclass,

small businessmen, sometimes women as well. Everybody is volunteering their time.

Their focus is usually quite local, and their efforts are part of a democratic

change process that makes big and small communities become modern. The acts of surface were

often deeply personal, helping Johnny's mother get her boy to the doctor, making sure the wheelchair

for Alice was paid for. Here, a United Cerebral Palsy fundraiser on the right.

And my guess is that the affliction narratives are quite operative in the House of Hope.

It's 1951. Local chapters of service clubs admired corporate efficiency,

but they didn't wield vast power. They used pancake breakfasts, the circus,

Christmas bazaars and individual donors to raise money. They address problems they themselves had.

Disability knows no class or race boundary. They gave backbone to services provided by Easter Seals,

then the Society of Crippled Children. Often they provided families the only financial support or

clinics dispensing durable medical equipment for long-term care. Not only was there no national health

insurance in the United States, but the feds before 1970 had almost no role in long-term healthcare,

even for children. Public schools are federally mandated,

and nor are publicly schools federally mandated to care to guarantee handicapped children a seat.

This is that these are both Shriners Hospitals. The first one is from

the turn of the century, but the not the turn of the century. The first one is from the early,

very very early 30s and the second

one is probably from the 40s. To be a cripple in the 1930s was to

belong to the useless Invalid Club. The helping hands were Shriners. But among others,

But by this point, the looping effect that I described early has done some significant, serious work.

When

the speaker you're about to hear is addressing a National Convention

of Shriners, and I'll just play it--

(music) [Audio recording:] "We want to give you some idea of

what the Shriners of North America

have accomplished for the most

pathetic of all human beings-- a poor

and penniless crippled child-- who has

no other chance in the race of life,

the habits little broken body mended,

except within the merciful walls of a

Shriner's Hospital for crippled children."

[End recording]

[Laurie Block:] The complexities of rehab and the attitudes of this Shriner

is what Franklin Roosevelt and his fellow

band of polios set out to redress with the Warm Springs Foundation. Warm Springs is the spot in

Georgia that became a rehab center with the help of Roosevelt. It was where he went after languishing

with the consequences of polio. It was where he recovered his spirit,

some function, and it is where he died. Images associated with Warm Springs

always include children and adults. Initially,

the foundation had a patient advisory group,

the the National Patient Committee. Most of the organization's innovative

work took place between 1929 and 1934,

when the entire campus at Warm Spring became

built as an entirely accessible facility. Where and the patients and the professionals

are both experimenting with physical and occupational therapy, bracing and, most important of all,

crafting an attitude for how to live

resiliently post polio post-- the polio crisis.

In the mission statement of Warm Springs

Foundation's National Patients Committee,

one goal is to develop a rational attitude toward the physically handicapped.

The group published a magazine called The Polio Chronicles

and it's editorials and articles between

for the between 1932 and 34 consistently

advocate for equal access to education, employment and the environment. There's plenty of how to

information and medical advice, but little sentimental musing except when

the subject of fundraising comes up. In general, the tone is abundantly exuberant

one where a pragmatic problem solving approaches to daily living dominates.

These cartoons are from a series called Playing Polio. There's many of them.

This is just a a a brief selection. The FDR spent most of his personal wealth

on building Warm Springs as a rehab center, and when he became president, he necessarily and with

some notable complications. Not Explained here, expands the scope of his efforts.

The goals become national, and a new organization gets born the

National Infantile Paralysis Foundation. We're going to listen to FDR in a moment,

briefly explain what his goals for that are.

But first, here are another set of cartoons. This is called The Old Paral.

The first one says that the with a man

on your left, he's oiling his machine age, braces. There's a man with a baby.

Somebody with polio can have a sexual identity and family responsibilities. And on the right,

the man declares that some people have polio between the ears. Okay.

This radio chat that we're about to

hear is part of the early fundraising strategy for the new National Foundation.

FDR's birthday became the occasion to have a National Party, a charity bash or ball,

depending on the community. These are held everywhere, nationwide, and for the most and for

most years that he was in office. FDR always gave a radio broadcast

on this night. Always he would talk about the work of the foundation and thank everyone who donated.

His tone is always measured, gracious, purposeful and considered.

[Distorted FDR broadcast recording]

[Franklin Roosevelt:] The problem of infantile paralysis

is not in the same sense an immediate emergency.

It is with us every one of the three hundred and sixty-five days of the year.

It is an insidious and perfidious foe.

It lurks in unexpected places and its special prey is little children.

[Second audio clip is selected]

"Therefore, with the birthday parties on January 30, 1935, and in 1936

the proceeds from these parties in thousands of communities were devoted and, in 1937,

will be devoted not to the work at Warm Springs, but to the broader national problem of infantile paralysis.

Seventy percent of all the money which has been raised has gone and goes to the care of children crippled by infantile paralysis

within their own communities."

[Laurie Block:] The key point there to hear very clearly is 70 percent

of the money is going to local people, to communities of support.

Only 30 percent goes to research.

I'm going to have to find, I'm sorry for this, there it is. The next one, I'm going to

have to go back to that slide.

[Clicking]

[Franklin Roosevelt:] A committee of doctors and of leading citizens determines how best that money shall be spent in each community.

With that determination Warm Springs has nothing to do.

The other thirty percent of the proceeds goes primarily to two objectives. The first is research.

Through a special research commission, with the help of a medical advisory committee,

outright grants for nearly three hundred thousand dollars

have been made to about 15 of the leading research laboratories scattered through the country.

Much has been learned and much has been accomplished.

While it is too early to say that infantile paralysis, in its epidemic form, can be stopped,

we hope that through new methods we can soon arrive at a substantial decrease in the number of children

who become infected and we believe that we are on the right track.

[Laurie Block:] This Birthday Ball Magazine cover is an

early how to public relations guidebook and souvenir for local communities.

One innovation is the corporate sponsor Seagram's. On the booklets back pages,

local and small businesses buy ads too. Before the 1930s to my knowledge, corporations do not

underwrite health charities. There are no walks for a cure used to promote in house,

teamwork or community relations. There is some corporate sponsored cause promotions, but that's

not fundraising. The Ford Motor Company produces weekly silent newsreels that include

volumes of public health information. But the purpose is more like a promotion for better living.

Metropolitan Life Insurance distributes thousands of pamphlets,

posters and materials about becoming modern, living a better life with refrigerators,

electricity, canned food, good hygiene. It's about keeping things clean

more than what pathological bacteria and viruses can do. These birthday ball images retain

19th century affliction references. The children are idealized, the mothers mythologized.

She's got confused identity. She's not a Madonna but a patriotic

dynamo with angel wings or maybe a vamp. It depends on how you feel about her dress.

The afflicted are neither rich or poor, and the idealized children are nearly innocent putty like.

The Rakish Party is a dreamscape. The image is neither about affliction

nor one where only cure counts. The National Infantile Paralysis Foundation's goal was to get

polio survivors support care, services and products that allowed them to recover and get on with

their lives independently. Again, research represents less than 30%

of the investment of the donor. In the mid 1930s, the research agenda is barely underway.

The public relations people haven't yet honed their message, though they will.

FDR and the Warm Springs polio community discovered that something was left out of their prognosis,

and that was what came next. Living the life of a polio survivor. At Warm Springs,

they discovered that some bodily function could indeed be recovered through physical therapy,

braces, and surgery. But what they redeemed most while at Warm Springs was their identities.

This was achieved by discarding the worst case scenario socially assigned

to their distinct to their destiny. FDR, with his polio community peers,

began to shift their focus from personal, unique individual problems to those they faced as a group.

They pooled their knowledge about what worked, standardized some of the rehab

procedures and shared technology tools. Some of them noticed how their

limits were shaped not simply as a consequence of their illness, but by the public's imagination and

emotional understanding of their condition. They wrote about the environment,

how the nation and institutions defined its obligations and responsibilities

to disabled American citizens. This was the beginning of something truly innovative.

No, FDR does not speak publicly about this. But the Warm Springs Patients

Committee did in the polio chronicles. But many things would happen next. World War Two is near.

Roosevelt's responsibilities increase, the Depression transform social welfare needs and concepts.

Modern medicine and research science expand. And in 1938, a significant change

occurred at the March of Dimes. A new public relations team,

public relations team is hired. The publicists Tom Wrigley from Universal

News and Hearst, Dorothea Ducas, Universal News and Robert Berger,

a radio man, formed the Public Relations, Radio motion pictures and fundraising department.

They changed the message and refocus the fundraising. Rather than paying

tribute to FDR led by Dorothy Ducas. They create shamelessly pathetic

appeals on behalf of crippled children. Every media venue, local and national newspapers,

magazines, radio, direct mail, newsreel, theater and film celebrities will be

involved and a fliction narratives will be transformed into a pure narrative.

Children are the primary focus as they are seen as the most innocent

and worthy group in a donor's eyes. But the new narrative, but in the new narratives

no crippled child gets portrayed living and afterlife in the community.

No one is followed through graduation beyond the hospital doors. The focus is on the moment of

diagnostic doom and very early rehab. The children seem to live eternally in hospitals.

The projected future in these campaigns

has tolerance for one goal and for one goal, and that is a cure.

Maybe walking with crutches is acceptable. Wheelchairs are not,

and it is important to realize that to be confined to such a fate would be

to be bound into a piece of equipment in 1935 where there were no curb cuts,

a world with no curb cuts, accessible bathrooms, etcetera. Until light wheelchairs and accessibility

were built into the environment, it was hard to think of chairs simply as tools,

giving people the liberty to travel from here to there.

Which is all that a wheelchair really does. It provides liberty. In these campaigns

research for the vaccine is a prevention ideal and often described as a cure.

The goal will eventually be to eliminate the entire problem,

but in 1938 that is hardly imaginable. The children in the posters and

newspapers that we've seen are, and these in the next in the new campaign,

the children in the posters and newsreels are real and not idealized.

Their expressions and poses are direct. This is always a performance, though,

and it should never be forgotten that in all of the campaigns it is always

a performance that you are watching. The clothes are bought, the phrases are scripted,

the action is scripted. But in the 1930s,

the graphic visual shift to real people in

hospitals made a very significant impression. Visual imagery with polio nearly

always includes a bondage theme. Everyone is caught in a technological nightmare.

You can only imagine the sound. It must have been like the first time you

walk into a NICU or an ICU unit and wonder, professional and laypersons alike.

What kind of hell is this? Crippled

children in March of Dimes campaigns are continually caught in cagelike crimps.

You can free the child, is the message. They are strapped to boards inside iron lungs and braces.

Happy smiling faces do nothing to assure you that polio is a tolerable fate, one that is livable.

The imagery is not dissimilar after a while, if you watch enough of it to

abolitionist visual rhetoric, where the shackles are symbols of bondage

or temperate store temperance stories, where the bottle is the icon of evil. Liberation is a must,

and it is mandated by the narration. Much of Dime March of Dimes, visual and verbal rhetoric,

takes the viewer into the moment of extreme trauma, and once there,

the narrator speak paradoxically of hope while pronouncing the scene a worst case scenario.

Images can convey a mixed message, always, but here that's just a voice, a radio address,

the one example that I'm about to show you.

And it's Dana Andrews, and again in 1938.

And like an ad for soap or a deodorant,

the person narrative is deliberately used to hook the listener to the product's purpose.

The product here is that the donor gives money.

[Selecting the audio clip]

And if I can make the mouse click the thing, OK, here's Dana.

[Dana Andrews:] Every time I hear the words Infants of Paralysis or see a child wearing braces,

I find myself seeing not the cripple child, but one of my children, David, Cafe or Steven.

I can't help wondering, what if it were Cathy? Today those three kids have

a special little game they play together, even if Steven is only three. It's just one of those kids

games makes no sense to anybody but them. But what if Cathy were wearing braces?

It takes 3 to play that game. And how long would it be before Kathy lost

the companionship of her two brothers? And after that, what if she grew up handicapped?

Those thoughts aren't pleasant, but I guess you parents have all had them.

[Laurie Block:] This is the looping effect at work. A mortifying fate governed by a covenant

of beliefs assumes such an existence would be to live in a realm outside the

earthly human community of connection. Possible usefulness, resilience and

pleasure that the dreams Andrews conjures,

his list of professions all

all require analytic skills. Hold on one second. Did I play the right?

No, it's in the next one. You're going to hear that they're going to all require analytic skills,

capacities and functions. Not at all affected by polio. What makes them unreachable sometimes.

At the in 1938, where the difficulties associated with accessing education,

employers, attitudes, the inaccessible built environment,

the ability to pay for your own medical care. But this style of narrative in a

fundraising campaign will be imitated by many other groups in the 1940s, fifties, 60s and 70s.

The story will get told eventually on television for all different kinds of diagnosis.

And then, nationally, it will go on endlessly. In the world of telethons.

[Dana Andrews:] There isn't a parent who at one time or another doesn't think that his

child can do just about anything or be anybody he or she might choose. Or maybe not the president,

but certainly the best doctor, the best lawyer, the best scientist,

the best banker. The dream is very but it all boils down just to this.

We all want our children to have an easier time of it than we did. Not to lack for a thing,

to have every advantage. In short, we want them to be happy. Well, happiness means health,

which brings me right back to that child wearing braces and that uneasy feeling.

It's when I see a crippled child, or see one of those pictures in a paper. I'm sure you've seen them.

It's then that I feel a chill run down my spine. It's then that I began to wonder,

could it happen to my children? That's when the danger of infantile paralysis really hits home.

That's when you realize that polio could wreck every dream you ever had for your children.

[Laurie Block:] This is the message that's repeated again and again and again in various forms,

by various actors and various settings for many, many, many years. The cure,

narrative and March of dime newsreel structures. And they they just take too long to like,

condense and show you quickly. Them quickly went like this. There are happy, innocent children.

A playground, sun, fresh air, swimming hole, pastoral landscapes.

An evil fate befalls the innocent. A dark cloud shadow passes over the pond and one appeal,

a crutch comes down out of a cloud and the pool is suddenly empty.

We enter the valley of the shadow of death. Often lots of numbers flash on the screen,

a body count of cases. A fervent narrator reports how an epidemic terror stalks communities,

each of them named and described. The virus is evil incarnate-- bondage.

The child fixed in an iron lung or braces or hot wraps, smiles at the camera.

This is the internal traumatization of the innocent. A vision of hope. Physical therapy sessions,

lessons where the child learns to walk, cures the miraculous liberation from this fate.

The goal is to throw away the crutches. Only walking is acceptable.

It's an aesthetic. The afterlife is a dark time and not portrayed in these stories,

ever that I have seen. No stories about going back to school, life lived in the community.

No account is given of how people learn to live a new kind of life, how they created,

what they did to have a new identity. Viewers are riveted to the traumatic moment of transition,

displayed and reported. Unlike today's breast cancer ads, you never see life go on.

Time shrinks to that faithful turning trauma point moment,

while possibilities for resilience disappear. The giving-- you,

the viewer must give benevolently. Your dimes and dollars are needed,

but neither sympathy or empathy is really at work here. Here, the donation is preventative.

It will not earn you grace. Its goal is to protect you from contamination by untamed chance and evil.

What is lost? Critical compassion is not required. You give to an organization.

What is gained? To throw away the crutches or scientifically eliminate the virus or bacteria.

That's the New Jerusalem. The insight about shared responsibilities and attitudes,

The understanding that many problems of being disabled are social and institutional.

The sensibilities of the National Patients Committee are entirely vanished in the cure narrative.

As mentioned at the local level, 70% of the March of Dimes pays for physical therapy and,

perhaps more important, independent living, durable medical equipment, special transportation tools,

home schooling and local communities. This was money not otherwise available to cripple children or

adults with the same functionality but disabled by different conditions.

The March of Dimes is the only provider of this magnitude in the country for about 40 years.

Even today, these costs are often paid for with a patchwork of resources.

When the vaccine is secured, the March of Dimes will in 1958 change its mission and abandon the

polio survivors it has supported. Or remarkable number of them would become pillars in the nascent

disability rights movement. But that's a different story and not a worst case scenario.

It is more than half a century of tales and ad campaigns like these

that feed the looping effect makes and that make the idea of living

an incurable's life such a distress. Everywhere we go it's on bus.

It was on bus, you know the panels on buses, it's on billboards. We in the it's still true

today. They're a little more tasteful. But everywhere what you are asked

for by a diagnosis group is money to support research for a cure.

Only a very very very few talk about living with the condition and

what that's like with the kinds of supports that that that requires. We in the United States have an

impoverished language when it comes to describing living well with

significant difficulties risks suffering. We find the idea of persistent,

incurable conditions somehow and affront and imply and employ either

overly ameliorate or overly alarming descriptions to such circumstance.

They seem an affront, perhaps, to our rights.

Expectations are entitlement as Americans. The ubiquitous presence of visual

campaigns for donations to support cures, create a space around those who

live with various conditions. The campaign, the campaigns, however,

make those lives seem to be always extraordinary and eternally in need,

even when illness and disease is an ordinary part of our humanity. This, too is true.

A person with a visible disability, like a person with great beauty,

the exceptionality arrests our vision at times. When my girls were young,

perhaps the most notable surprise in our life. What was not predicted was our

loss of anonymity. Always my daughter Zoe was and still

is a moral subject or object in someone else's eyes. People would come up to me

or my husband and insist when she was little, "Oh, she's really going to be okay." Or they'd ask that same

statement as a question. "She can have surgery the next day." She could be.

I've just come out of surgery, you know, Why did I have to answer?

What suite of beliefs did they have that it was their right to ask? This was not caring.

Their benevolent concern was not useful. But she arrested them as we move

past each other in that in time. So I'm going to give my daughter Zoe the last word here.

This summer she picked up a spina bifida-- she's 19. She's like a sophomore in college

now. This summer, she picked up a spina bifida national newsletter.

The banner headline in bold text functioned like an image was about prevention. Folic acid

mostly. To my complete surprise, I heard her say to me, why do they do this?

I mean, this is supposed to be the organization about people like me.

They did this at the National Convention, did you notice that Mom? Why lead with something that snuffs

the ME's in the world out? She understands the value of folic acid.

She's not arguing against its usefulness. It's the place on the page of the headline, you know,

as the centerpiece of the newsletter from the diagnosis group representing

her that she objected to. The first thing to see when she picked up the newspaper.

She questioned the editorial wisdom. Who was this address made to?

If the organization was about spina bifida, should it not make people like her first?

She felt left out. She questioned the covenant of beliefs at work in an organization

whose days is devoted to a diagnosis that gives birth to people like herself.

If they did not recognize how such a headline would make her feel, who would?

So, God bless us everyone, as Tiny Tim would say, and may next year bring peace on earth

greater than that which we currently know. But I'll show you one other thing. But like I said,

if you watch these carefully, there's the you always see the the the crib opened,

the bars opened and somebody is going to get out and walk away. That's not how it happens.

And this child who's wearing H what are called HKAFOs,

the braces are coming all the way up. HKAFOs come up all the way to the hip.

There's a hip band that goes around the waist. You can't stand up in HKAFOs

if you don't use your crutches. We have about 15 pairs of them

in our attic. Here, she's just walking right out of that wheelchair and the competitive

winner here is not finished

with her race and not smiling. But one of the only campaigns,

promotional campaigns that I know of, that was designed by people with

disabilities prior to, like, very, very recent times is this one.

And all of them use the text as image. But the message that

the text delivered is against the what a typical reading of

the images would have been. It's the person who designed it. I interviewed the person who

designed it some years ago. He's now retired, and

he would not identify himself as a person with a disability, but he has

very significant scoliosis and grew

up in the 1930s. And he worked with a

colleague of mine, John Kemp, who was then, I think was that he was then at Easter Seals.

And this is another, this is, you know, the recent spina bifida news association.

It's just everywhere, everywhere, everywhere. And the relationship of goodwill,

benevolence, giving donors and cures. So thank you very, very much

and whatever questions let's ask.

[Applause]

[?] have that smile.

[Dr. Elizabeth Fee:] Thank you for a wonderful presentation and beautifully illustrated as well.

Now each of you should have a microphone in front of you if you push the red button,

if you would like to make a comment or ask a question,

I'm sure Laurie would be willing to would like to hear what

you have to say.  [Laurie Block:] I'll just point out before I just close my computer down

this little, this gentleman in the box, you see this box,

this kind of box and a lot of the 19th

century affliction narratives, you know, but they'll be attached with wheelbarrow.

Like somebody will have screwed wheelbarrow, wheelbarrow handles onto the

side and a wheel. But you know all kind of all ages get moved around in them.

I figure this is like in Ashfield Massachusetts, looks like Ashfield. Right next to where I live.

[Background noise]

Yes,

[Whispers]

[Audience:] As the parent of a cerebral palsy (Computer sound)

cerebral palsy affected child,

(Computer sound)

--Sorry. Who as it happens at this very moments having annual review.

At the service provider organization,

I really appreciate your message and

the ways in which you've asked us

to be insightful as we struggle to be both advocates for the public,

for our family, and for any one of many categories of people slash patients,

This insight keeps some of us who's

motives might be good from maybe going overboard or joining a supportive trend

or message that actually does damage and doesn't bring out the individuality

or the spirit and build a personality and opportunities of the individual.

One thing I might comment is that we've

had the occasion with my particular family

member who has the disadvantage of both physical handicaps and some

understandable neurologically associated

mental problems that colleagues and

others who have children with very

or adult relatives with very severe mental issues but not physical

handicaps and who struggle with the disadvantages you highlighted that

have gone on for a very long time. Where actual services, resources,

equipment and other gaping needs haven't been met by state or other resources.

Those individuals who have a mentally

ill relative cannot get services. And we oddly enough are actually able

to get services because of handicapping condition physical handicap.

So even within the field of disability.

The dependence on state benefits,

or perhaps a private charity, determines whether you can get your needs met.

You have to fall in the right set of

disabilities or fall in the right category of eligibility for receipt of those,

and I think probably partly behind your

message to us about similarities of

one kind of disability and maybe virus

induced others is to look very broadly at all those with whatever condition

and try to look for ways to be helpful.

[Laurie Block:] Well the lack of collective support around

healthcare needs in this country is more evil than the viruses.

It causes more harm. It exhausts people.

It's that simple. [Sighs]

Why that's so? It's very complicated.

[Audience:] Well, I thank this host organization for hosting this particular issue

among other things that draws attention to profound need and and the research establishment

to which I contribute every day for 30 plus years behind me.

Is not focused on doing those issues, but as a general community,

I'm delighted to see the interest in this and and appreciate that you were

offered the opportunity to speak today.[Laurie Block:] Thank you. Thank Elizabeth.

[Dr. Elizabeth Fee:] Are there other comments, questions?

Yes.

[Audience:] I work in the injury prevention field,

and there's a lot of controversy in my field about the use of the word accident.

And many professionals and scientists are against using that word because

they say it infers that something couldn't have been prevented.

And so I've done some research with parents whose children died from accidental

injuries and how they feel about the word. And because I think that the more

that we try as scientists try to claim that we can control almost all the

variance in terms of health outcomes. The more than blame potentially gets put

on families that these things happen to and and there's a real tension. That.

And the message I sometimes get from the professionals is that you can

almost choose to be sensitive to the families that already have the condition.

Or you can choose to reach the majority of people and motivate them, say, to never have the condition

or to think the conditions bad and then they'll want to prevent it. You see what I mean?

But that there's a tension there. -- [?] Right. So I mean that's just a tension

that I that I feel that if you emphasize that it's preventable then what kind of a parent,

you know, you know what kind of a parent has a child that you know encourages

one of these conditions, and that's just something I encounter a lot in,

in the injury prevention field.

[Laurie Block:] Accidents are real. (Laughter) I don't, you know, I don't know what to say.

I mean I it it it. Well, a really delicate balance in

these kinds of things has to be struck. But to think that you can rid the

world of chance is so illusory. It's beyond my imagination.

[Audience:] Well, I mean, one thing I'll just say,

and I have, I think moved it a little because I would, I was able to document and now

there's many studies that have documented that the word accident doesn't mean to the lay public

it couldn't have been prevented. There's a lot of documentation now that you can still use the word

accident and that's compatible with the fact that it could have been--

prevented but I still sometimes get the sense from professionals that

there's this tension between being, again sympathetic or supportive to

families versus reaching people that have not been affected yet, because

you almost want they feel you should. You need to almost scare those people to get them motivated.

Well that certainly suggests part of the way that and they I mean when

we first started to get the spina bifida newsletter way back

when it was full of Irish Catholic. To my husband used to have to translate

it to me because it wasn't a world, It wasn't a world. I understood the language of it all.

It's like going into Mexico cathedrals and you know, he's the one who can read the saint imagery

to me.  It's, believe me, not a natural vernacular of mine, though I described a lot of it.

But they used to have all these prayers and all. It was very, very,

very sort of spiritual in its approach.

And it got taken over shortly

before folic acid came from England

to the United States and by the by the prevention world.

And it really was very shocking to go to the plenary session of

the national conference with no mention of adults and adult care,

with a very less than 10% of the audience in this or diagnosis

organization was visibly had

spina bifida and the whole discussion was prevention. And my daughter went through a

few sentences and said we don't have to come back again. And she's, you know, like,

can somebody tell me what, you know

predictably, her lifespan is? No! Can they tell me what the long-term

consequences of her health circumstances are going to be? No!

You know something's just happened.

[Audience:] Hi, I was wondering if you could explain

once more what the looping effect is?

[Laurie Block:] You gotta ask Ian Hacking not me--  (Laughter)

And the particular one I began with. In this particular talk, because I'm,

I can't I can't address the complexity of making up people

and Hacking's view of that. I won't. I can't do it. I'm not not on my feet.

But the imagery when you have, if you think about what I described

as the sacred practice of a devotional

gaze in a religious context, where--

where the beholder and the beheld have

a strategic set of beliefs and provide

different kinds of services to one another.

And you look at how suffering is

depicted and imagery that describes

the appropriate behavior towards

incurable diseases over time.

The emotional space that's exchanged.

And the roles of who is assigned different kinds

of things get also are changed. In the 20th century,

the sacred gets dropped out of the

public image of disability. And it's shared by a multicultural setting and

it's on the bus and it's on billboards and it's on TV and but it contains,

though it's mostly forgotten. This older affliction structure and in another time,

if somebody I would love to study. This is the reason why I would have

liked that Princeton Fellowship. Given that given that said,

my topic was the fear of fate,

I would love to look at how medical school curriculum addressed in the transition

between approximately 1890 and about 1950, the topic of incurable disease

and suffering and what to say. How to counsel in such situations?

Because I think you'll, you know,

the redeemer in the ads is always the

doctor or the scientist in the lab. And it's not the person who

really learns to remake their identity through all kinds of the through the aids of other people,

sources, you name it. But many people live a very long time

with all kinds of incurable diseases. [Audience:] So the looping effect is a back

and forth between the person with disability and the person--

[Laurie Block:] The cultural shaping of what people's relations and beliefs, different from

reasoned, rational theories and ideologies proclaim them to be. It's it.

It's that I'm taking an idea of Hacking's and and

applying it to how the categories how it if like spine,

like spina bifida in a male community is John? -myelo--

It's myelodysplasia. It's myelodysplasia. Nobody in the world knows that word. If you say, Oh well,

my daughter has myelodysplasia, what's that? You know. If I said my daughter has a neural tube defect,

what's that? You know spina bifida, it's a really old word. You find it in the Surgeon General's

report when it was diagnosed. I looked it up from the early 19th century.

[Laughter]

[Audience:] About accidents? I was interested if you

could comment a little bit about why,

how those kids in those early tract literature's get their conditions usually

and what the tracts which are all religious. What attitude they take toward why

people get the conditions that they get, or why they get in the trouble that they get into?

[Laurie Block:] Well, there's many different causes, but they're almost always explained

as organic except for accidents. But when the and the accidents is

a is a category in the 19th century literature of cause for I collect accident brochures if you want.

How to prove I have a whole pile of ephemera about accidents?

I kind of appreciate accidents and

and what's really to me it's amusing.

People fall down wells at that's a common accident that happens in this literature.

But you know the boys will be playing in out some place instead

of going to Sunday school and it's you know they're not acting well.

Accidents are associated with somewhat

less than good behavior. You know, I can't say I an

accident happened just because. The weather was bad that night. And you know,

I don't read stories like that. Usually it's more highly structured than that.

But then there are accidents of like there there are stories about like railroad accidents.

And then in the four weekly news reels

and silent news reels, there are more. This would be a great thing to study.

There are more examples of how to cross the street.

How like all these ways that car accidents

used to happen before the streets were rationalized and things that go wrong

with cars again and again and again. Dozens of. Not dozens.

There's probably 5 or 6 little safety pre-safety things.

I love the ones about how to cross the street. [Dr. Elizabeth Fee:] We'll take two last comments,

Allison and then Steve.

[Allison:] Yeah, I noticed that most of your ads and things stopped about the

1980s and I was wondering if you had done any more recent research,

especially with Shriners Hospital. I don't know if you've ever had a reason to call them,

but if you get put on hold there

and you listen to their hold music,

it's it's interesting to say that I didn't know if you had done any studies?

[Laurie Block:] I have all kinds of stuff from. All periods. I just, you know,

like there's only so much you can do. But yes, I'm actually not only called Shriners

Hospitals for various things and services, but been in them and even

was in them as a child. Mostly because my dad, you know,

we're one of those little fez. Felt that that was my childhood reason,

my adult reasons, because it was a place that you could get equipment serviced where I live.

[Silence]

[Stephen Greenberg:] I've always been interested in the

notion of personal responsibility for what happens to your health.

You can go way back, and I'm talking the early 17th century when you begin to get what

very early printed public health documents about epidemic disease. And if you look in London in the

1620s and 30s, there's always two schools of thought about plague. There's the idea that plague is a

visitation on the community and it's somehow we've done something bad or

careless to bring this down upon ourselves. Or the idea that even though they have

no idea what the disease vector might be, that there's some public response.

And of course, if you accept the, you know, the the visitation scenario.

Then you're totally absolved of any public health responsibility,

moral health, perhaps a public health no. And there's a very famous book that's

really the first comprehensive attempt to get an idea of the effect of plague on the society.

And really it's the beginning of epidemiology,

but it's called London's Dreadful Visitation, and there's all this old-fashioned

skull and angel wing kind of symbolism on the front cover. Yeah, so the more things change,

the more they remain the same.

[Laurie Block:] Well, I assure you that being told that I had a worst case scenario

was a maternal oppression ofthe old-fashioned variety.

[Off microphone] A maternal impression? Somebody else

here can explain to my husband what a maternal impression is. [Laughter]

That's when I when you one of the causes, one of the reasons for having a

child with a significant problem. Is you saw as a pregnant woman

something terrible and that is how you

acquire magically, sympathetically, the condition that you have.

My obsession is the consequence of a worst case scenario being said to me the way it was said to

me when it was said to me.

[Dr. Elizabeth Fee:] A very common understanding of disability.

In earlier centuries. --Oh yeah, yeah. Please join me in thanking Laurie Block.

[Applause]

[HMD Lecture, LHC Auditorium, Dec 12, 2006, Thank You]