The History of IDD (Part 1)

Hey KenCrest team,

I’m Aurora Kripa, the Chief Operating Officer and your guest blogger for September.

Welcome to the first part of our series on the history of Intellectual and Developmental Disabilities (IDD). In this blog series we will look at significant milestones, transformative legislation, and influential figures who have shaped the landscape of IDD both in the United States and around the world.

Are you familiar with the history of IDD in the United States? Or globally? While reviewing employee demographics recently, I noticed many of you have been with KenCrest for more than 10 years and some have even been here 30-40 years and have witnessed some progress but maybe not as much as is possible. Additionally, some of you who have lived outside the US might have experienced a different reality for people with IDD.

“History, despite its wrenching pain, cannot be unlived, but if faced with courage, need not be lived again”. Maya Angelou

As mentioned in the quote above, we cannot change history, but we can certainly learn from it to avoid repeating mistakes and to build on successes. My curiosity is always taking me on a journey of discovery, and when I began researching for this blog, I ended up spending hours reading about the history of IDD making it difficult to condense the information for this blog, so I encourage you to do some reading yourself to learn more about the developments in the field of IDD or any other topic that interests you.

I hope learning about the history of IDD inspires you. Whether you have an innovative idea or aspire to be a dedicated advocate for change, reading about those who first dared to challenge the system might motivate you to pursue that idea.

19th Century

It wasn’t until the mid-19th century that social reformers began to show concern for individuals with disabilities. A social reformer named Dorothea Dix began to advocate for improved services for people with disabilities, many of whom were living in terrible conditions. In 1848, it was unimaginable for a woman to address Congress, so Dix had Samuel Gridley Howe, another prominent social reformer, deliver her speech to Congress. She requested that the US allocate 5 million acres of land nationwide for people with disabilities. The request was approved by both houses of Congress but ultimately vetoed by President Pierce. Through her fervent advocacy and genuine intentions for people with disabilities, Dix played a crucial role in paving the way for public institutions.

By 1842, TRAINING SCHOOLS began to emerge in Europe. In the United States, Dr. Samuel Gridley Howe founded The Massachusetts School for Idiotic and Feeble-Minded Youth in 1848—a pioneering boarding school in South Boston for young people with intellectual disabilities. Dr. Howe emphasized the value of family and community, aiming to prepare children with disabilities to integrate into society (INCLUSION). Subsequently, several other boarding schools for children with disabilities were established on the East Coast, including one here in Germantown in 1852. The training schools were viewed as educationally successful, providing hope for many families. The students engaged in physical training to enhance motor and sensory abilities, basic academic learning, and lessons in social and self-help skills. Many students with mild and moderate disabilities developed the necessary skills to return to their families and communities.

Unfortunately, because of economic troubles in 1857 and because of the Civil War, there were no employment opportunities for returning students. Competition for jobs was very high, with immigrants willing to work for low wages. Students who returned to their communities looking for work usually ended up in poor houses or jails.

FROM TRAINING SCHOOL TO ASYLUM

The number of training schools increased because of parent demands. Parents believed the schools were beneficial for their children, but the schools quickly became asylums, providing custodial care for individuals with developmental disabilities. While enrollment in the schools increased, the commitment to education dwindled away. By 1875, several states began building custodial institutions.

Even though many believed that the early training schools were successful, the education goal was sacrificed for the greater concern of housing a growing number of people of all ages with all levels of disability. The institutions changed their focus from a training environment to a custodial environment. The goal was no longer to educate students for life in the community but instead to train inmates to work inside the institution. Higher-functioning inmates were used as laborers to reduce costs.

Institutions began asking the states to pay for custodial care, arguing that providing persons with disabilities with safety and shelter was the best they could do, and this would relieve communities of poor houses.

This was the beginning of the dehumanizing process. Unlike the early training schools, which encouraged interaction with the community, the new institutions did not. They were in rural areas and away from the view of most people. To be continued…

Next week we will continue to cover more on institutions and the Parents Movement. I look forward to and welcome all your feedback on this topic or if you have any other ideas please reach out.

Aurora Kripa

Chief Operating Officer