On the Shoulders of Giants

Two things happened this past week that brought me to a place of deep contemplation and study.

The first is that I had a conversation with someone who sits on the board of directors for a children’s hospital. She shared with me that there are still individuals in health care and state government who believe that children with disabilities should be placed in institutions.

The other thing is that my new state-funded respite worker arrived.

The opposite nature of these two things has caused me to reflect upon my good fortune with a renewed sense of gratitude. I have been reminded, once again, that I am standing on the shoulders of giants.

From the moment we learned that the Girl in Charge was going to be disabled, we were inundated by state and local early intervention services who contacted us, eager to offer the support we needed. And after we moved, our new state offered generous services for her as well, including respite care paid for through her Medicaid Waiver. So for the past six years, I have been blessed to have a respite worker in my home several hours a day, several days a week, giving me relief so that I could attend to the needs of my other children. This program has provided the Girl in Charge with the one-on-one care she needs while at the same time saving my sanity. I simply do not know what we would do without it.

These are the extraordinary women who have come into my home and treated the Girl in Charge like one of their own. I am forever in their debt.

But knowing there are still those in positions of authority who believe children with disabilities should be institutionalized is, at best, baffling to me, and at worst, horrifying. This knowledge has driven me to re-educate myself about the history of disability in this country and I have been reminded in the most sobering way that if our daughter had been born 100 years ago, her life, and ours, would look very different.

Throughout most of history, people with disabilities lived on the margins of society. They were most often destitute, begging on the streets or wasting away in poor houses. Social reformers in the mid 19th century began to believe that with some education, children with disabilities could grow to contribute to society in a positive way. Training schools were opened to offer pupils advancement in motor and sensory skills, basic academic education, and lessons in self-sufficiency. The goal was to prepare students to return home and interact in a positive way with the rest of society. For those with mild disabilities, these schools proved to be a great success, giving families hope and assistance for the first time. And as word spread, more and more training schools opened around the country.

But with the economic downturn in the late 1850’s and the outbreak of the Civil War, focus on training children with disabilities diminished. These children began to be seen by society as a financial burden, rather than a population that needed to be helped. The educational focus of the training schools quickly turned into a custodial one. Parents were told there was little that could be done for their children, and it was best to place them in these institutions where at least their physical needs could be met. Because it was difficult for physicians to tell the difference between mental illness and developmental disability, these two populations were often intermixed within the same facility. They were called “asylums,” meaning “secure retreat,” and the residents were now referred to as “inmates” rather than “pupils.”

It didn’t take long for the expense of such institutions to drain available public funds. Efforts were made to economize and to make the institutions more self-sufficient. Despite their limited resources, many facilities attempted to maintain their integrity as places of compassionate care. But over time, most were not successful.

In some locations, higher functioning children were used as free labor to work in laundries and farms. But as overcrowding increased, supplies still ran low and children within these institutions suffered from neglect. Stories were told about children sleeping on floors, rarely being bathed, seldom going outside, having inadequate nutrition, and spending almost every day in the same room.

Many children also lived in daily fear of their caretakers. Overworked and underpaid, it was not uncommon for members of staff to take out their frustrations on the children, abusing them both verbally and physically, and, in some cases, sexually. Visits from family members were discouraged and at times, outright denied. There was little oversight, and what went on inside the institutions became shrouded in secrecy.

Segregating those who were different was common practice in society during this time. Unless a family was wealthy enough to care for a disabled child at home in private, parents were pressured to place their children in these institutions- physicians and government officials insisting it was the best place for them. These placements became standard practice by the late 1800’s and continued for many decades into the 20th century. Many children grew up in institutions, never knowing the love of a family.

In the 1920’s, reform movements began to form in small disorganized groups around the country. A few educators noticed that some of their mildly disabled students benefited from one-on-one attention, and the seeds for special education began to be planted.

Some parents of children with disabilities, traumatized by the separation, began to organize in hopes of supporting each other. Many wanted to bring their children back home, but their biggest hurdle was the lack of community services and their inability to financial meet their children’s medical and educational requirements. All state funding at this time went directly to the institutions.

Another roadblock parents ran into was the misconception that they themselves were responsible for their children’s disability. It was a common belief that children were born disabled because of the moral failings of their parents. The concerns and wishes of parents were rarely taken seriously and doctors continued to encourage institutionalization.

An unexpected breakthrough came during WWII when many of the male members of staff at these institutions were drafted into the war. In some cases they were replaced by conscientious objectors, who subsequently conscientiously objected to the conditions they discovered inside these state run facilities. They were outspoken, and were able, for the first time, to raise public awareness about the circumstances in which these children were living. After being invisible for decades, the plight of the disabled child was finally the focus of public attention again.

After the war ended and the United States began to enjoy an economic boom, people were able to refocus on social reform. Parents began to organize with new fervor and demand better services for their children. Many of them started their own services in their homes and neighborhoods, but they still lacked funding and support from society at large.

Two courageous mothers made a huge impact on public opinion during the 1950’s when they published books about their disabled children. One was Pearl Buck, the Pulitzer and Nobel Prize winning author of The Good Earth. And the other was Dale Evans, the wife of American singer Roy Rogers. Public opinion swayed against state run institutions in response to these books, and funding for parent organizations began to pour in from private donors. More and more parents formed their own organizations and demanded better services for their children. By the end of the 1950’s, national parent organizations were gaining strength and lawsuits were being filed to force states to recognize the rights of disabled children.

During this time, politicians began getting involved and making public statements in support of disability rights. Governor Youngdahl of Minnesota said, “… the retarded child is a human being…. He has the same rights that children everywhere have. He has the same right to happpiness, the same right to play, the right to companionship, the right to be respected, the right to develop to the fullest extent within his capacities, and the right to love and affection….” These words took the world by storm. Nothing like it had ever been said about a disabled child, and for the first time, some of the prejudice against children with disabilities and their parents began to wane.

President John F. Kennedy further bolstered the movement when he spoke publicly for the first time about his disabled sister, Rosemary. Another sister, Eunice Kennedy Shriver, wrote an article about Rosemary that appeared in the Saturday Evening Post, which further alleviated some of the shame and stigma surrounding having a disabled family member.

President Kennedy took it one step further when he organized the “President’s Panel on Mental Retardation” which, after much research, wrote a report that led to new legislation that authorized funding for extensive research on the diagnosis, treatment, and education of children with disabilities. For the first time the federal government had gotten involved in finding solutions for the challenges faced by disabled children and their parents.

Over the next decade, the movement continued to gain steam, and in 1975, the United Nations signed the “United Nations Declaration on the Rights of Disabled Persons,” which inspired laws that would eventually be passed in many countries around the world.

But despite the progress made on the national and international scene, many children still lived in institutions. The national attention hadn’t trickled down to substantive change for individual families. Community services and mainstream education were still not available for most disabled children. And many in authority insisted that because of better funding and efforts at reform within these institutions, they were still the best place for these children to be.

But in 1973, an organization called the Children’s Defense Fund, noticed that 750,000 children appeared on the U.S. Census as not attending school. Upon further research, it was discovered that these children were disabled and were not being educated by the public school system. The Pennsylvania Association for Retarded Children used this data in their lawsuit against the U.S. Department of Education. The Federal District Court ruled in favor of the children, which led to the passing of federal law mandating that all children, regardless of ability, should be educated by the public school system- something that had never been possible for children living in institutions.

Over the next fifteen years, this legislation led to even more congressional acts being passed that protected the rights of children with disabilities. Thanks to the Katie Beckett Medicaid Waiver, as well as other legislation, parents were finally given the choice to keep their children at home and seek newly established community services for their support, rather than place them in state run institutions. More and more of these institutions began to close- a process that continued well into the 1990’s.

In the end, more than twenty congressional acts were passed in consequence of lawsuits filed by parent organizations before President George Bush finally signed into law the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) in 1990.

This history is humbling and awe inspiring to me. I can’t imagine the heart ache parents went through for generations as they fought against a system that denied them and their children their basic constitutional rights. Knowing that there are still people in positions of authority today who believe children with disabilities should be institutionalized, is unbelievable to me.

The thought of placing the Girl in Charge in an institution is the stuff of my nightmares. Imagining that we might never have known the sound of her giggles when her dad comes home, or how it feels when she throws her arms around you and gives you a million-dollar hug, or the way she sings musical scales in her bedroom at 2 am, or how she wiggles her little bottom back-and-forth when she’s frustrated, or the way she squeals with joy when she’s about to get into the bathtub, or how she puckers her lips when you go in for a kiss, or the way she collapses in on herself when you tickle her and does that little growly giggle…. Imagining a life without all of her unique beauty and joy is absolutely devastating to me. All of that would be gone if she was in an institution. In fact, none of that would have developed in the first place because children in institutions do not thrive. Period.

Knowing that thousands upon thousands of parents before me never knew the joy of their disabled child, is soul crushing. Not to mention the rampant neglect their children endured in their absence. It is unthinkable. Those are the parents I have been mindful of this week- the ones who didn’t have state funded in-home respite care. Those are the parents who suffered beyond anything I can imagine.

But those are also the parents who changed the world.

From the darkest corners of their agony, they rose up and fought. They are the giants on whose shoulders I stand. And to the day I die, I will be profoundly grateful that because of their determination, hard work, and sacrifice, each night I get to go into the quiet, peaceful bedroom of the Girl in Charge, kiss her gently on the cheek, and tell her how much I love her. It is a privilege so many of them were denied.

The words Thank You are so inadequate. But they are all I have. To all those who fought for my daughter’s right to get an education and live at home with her family, from the bottom of my heart, Thank You. I owe you everything.

Sources and Additional Information:

Children with disabilities: Deprivation of liberty in the name of care and treatment

Parallels in Time: A history of developmental disability

The History of the Americans with Disabilities Act

Disabled Kids Living Isolated Lives in Institutions

A World Without Down Syndrome Babies

27 Years After the Americans with Disabilities Act, Has the Nation Kept Its Promise of Equality?

Video: One State’s history of their Public Institutions

4 thoughts on “On the Shoulders of Giants

  1. Janet Emma Garbe

    It IS unthinkable. SO much is unthinkable that most (including myself) often try not to as it makes it hard to just go about our happy lives all skipping & dancing. I worked for The Northern Virginia Training Center in Fairfax, VA for years. I was (blessed to be) assigned to Unit 3A, home to 30 plus ‘severely, profoundly mentally & physically disabled” citizens from ages 7 to 57. I learned not always clear to caretakers & deciders whether a Person is mentally OR physically disabled or BOTH. ALL SHOULD HAVE THE SAME RIGHTS as anyone not labeled disabled. Those so physically disabled that they are unable to ‘speak’ or communicate in ANY way were once thought to be unable to understand. Lord, if I learned anything in that place, I learned NEVER to assume that because someone cannot communicate outwardly that they do not hear & see EVERYTHING going on around them – as well as comprehend it. I do believe that many well meaning individuals over even centuries have simply not understood or been able to decipher what another human being was capable of because they weren’t able to communicate in recognizable language. My friends Art & Brian spent most of their lives being underestimated, only to find that with pointers attached to their slow moving heads & given time (painstaking, & the kind of time some/most don’t have or won’t take), they could tell you EVERYTHING. Just research Western State Hospital (Western State Lunatic Asylum & DeJarnette Sanitarium in Staunton before EVERYTHING changed because of ‘conscientious objector” types. Mind boggling – and yes – horrifying. I once cared for a gal named Ellie who came from a place like that. Forget being showered w/ a garden hose in your wheelchair – naked & kept that way. Add sterilizing those thought not to be fit to ‘reproduce’. Or being caged in an attic, kept out of sight & fed like an animal on the ground so that at 40 years of age you crawl & get along like one rather than walk upright. I’m talking about a WOMAN w/ Downs Syndrome. So much we turn a blind eye to so we can sing, dance, work & eat in peace. Susannah, your post also shines – for me – a keen light on how tough to so-called ‘align’ with any so-called ‘political party’. Look at some of the battles between the ostensible 2 party system in general on how to serve individuals with such challenges. Bottom line is, much work is needed in the areas of understanding & CARING for BOTH mentally unwell & physically unwell Citizens & Human Beings. Some are burdened w/ BOTH challenges. But not being able to SPEAK (communicate feelings, pain, language, understanding or capacity outwardly due to physical impairments) CANNOT be the barometer for deciding basic rights, care, education. And sentencing any human being to anything less than the rights the rest of us enjoy is truly criminal. I digress here to say “We DO better when we KNOW better”. But we have to keep learning, growing, changing & DOING better. I am close to one of the kindest, most generous, most artful, talented, strongest human beings I have ever known. Had it not been for his LUCK to benefit from TIRELESS advocacy – all the way to convincing the legal system to HELP when they didn’t see enough PROOF to do something until it was almost too late – this individual (as many like this individual) would be on the street. worse than dead if you ask me. If you think it’s hard to be homeless when you can talk & ask or BEG for what you need, try it unable to communicate for mental OR physical reasons – all while potentially WATCHING & HEARING everything. Fathom that for a second. It’s happening EVERY day in every city. Okay, back to my lunch & freedom from having to think about this.


    1. sutay7

      Sterilization was one of the many subjects I didn’t have room to include in this post. But yes, the horrors are difficult to capture with words. So many have suffered unnecessarily. Most of us have no idea. Even those of us who feel educated on the subject, have no idea the horrors so many people have had to go through… and not that long ago. It is gutwrenching.


  2. Allyson

    1973 was the year I graduated from nursing school. During my training I saw institutions that you described. They horrified me. I remember when I first went to work at the University of Utah Medical Center, a man called simply “Goldie” who was cognitively impaired, in his fifties and in a diaper became ill and became one of our patients. The glow that he had about his countenance warmed your soul when you entered his room. He had been institutionalized all of his life. It makes me sad to think of what his family missed in having that spirit in their home. I also recall a neighbor for whom leaves from our gorgeous alder tree were an irritation, who kept his yard very sterile and immaculate-looking. He spent six months of the year creating Christmas ornaments for his yard but would bring a daughter with Down Syndrome who was institutionalized home to be paraded before his friends for Christmas only once a year. It broke my heart to think of her growing up in an institution and what her presence would have done to soften this worldly, hardened couple, had they kept her at home. I do not want to judge people who have decided to put their child in an institution if I can, as I believe that some children would be treated better in a group home then their parents would treat them,but I remember Nicole saying after growing up with Scotty in her home that her fear was not that she might have a disabled child but that she might not have one. Respite care is a wonderful thing, isn’t it?

    Liked by 1 person

  3. Eileen

    I definitely posed my question to the right person. You are a gem Susannah. This is beautifully written and researched. I will be forever grateful to all the people who paved the way for my son with disabilities to have an incredibly abundant and joyful life, at home with his family who ADORE him. He was everything I never knew I always wanted (to borrow a quote from my friend who is also one of the lucky moms.) This information is so important to share with the world. Thank you!


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