I get my history nerdiness from my dad. I love learning history about certain things. Hey, our History Teachers did know something–that understanding history helps us understand where we are and where we can go. History is important. I find that many parents do not know the history behind IDEA 1975 and it is important. While I don’t excuse anyone’s behavior or the turmoil that accompanies the IEP process…understanding where we came from helps give new perspective and many special needs parents today, out there fighting the IEP battles, you all were born well after 1975 and may not know the history. There are so many interesting pieces of history that accompany special education, you really should take a look. For those of us who have lived in the age of ADA (passed 1990, my junior year of college) may find some of the disabilities history unthinkable. But it is what it is. So where to start…and I promise to try to keep this as brief as possible.
The turbulent 1960s and civil rights
The 1950s and the 1960s brought us many memorable civil rights moments, as pertains to people who are black/African-American. But many things transpired in the world of disabilities that did not garner as much publicity. For one, JFK (who had a sister with intellectual disabilities) appointed a panel to study the status of Americans with “mental retardation” and make recommendations for reforms. Also, Medicare/Medicaid was passed/started in 1965 and included the disabled. LBJ continued much of the work of JFK after his assassination and I have to wonder what “could have been” had JFK not been assassinated or had LBJ not had the Vietnam issue. Que sera sera, right?
The 1970s and institutions
The 1970s saw more movement in the world of disability rights. 1971 brought disabled people their first law institution devoted to defending their rights and the first major court case determining basically that you cannot just institutionalize people and forget about them. 1972 was the famous Mills case securing the right to education. 1971 was also when PARC (Pennsylvania Association of Retarded Citizens) vs. Pennsylvania was filed, guaranteeing our kids an education. The first handicapped parking placards were introduced in 1973.
In the late 1960s and early 1970s, several investigative reporters did exposes on people with disabilities and the horrific conditions they were experiencing living in institutions. You can Google them if you want, I’m not posting links. As a Mom to a child who just a generation ago would likely have ended up in one…I find them unwatchable. I just can’t-they honestly make me nauseous the few times I have tried to watch. Two of the more famous shows were the expose of Pennhurst (here in Chester County) and….Geraldo Rivera’s 1972 expose of Willowbrook in New York. Yes, really. Geraldo Rivera was quite instrumental in helping our kids get some of the rights that they have. Sure, there was a movement already underway and his documentary was one of many. But, his was one of the more famous ones. One of the ones that helped create chatter and facilitate change.
Section 504 and IDEA 1975 history
All of this momentum…the civil rights activities, the TV shows…it landed us at gaining Section 504 and IDEA 1975. Passage of the Rehabilitation Act of 1973 marks one of the greatest achievements of the disability rights movement. Section 504 prohibits programs receiving federal funds from discriminating against “otherwise qualified handicapped” individuals and sparks the formation of “504 workshops” and numerous grassroots organizations. Disability rights activism seizes on the act as a powerful tool and makes the signing of regulations to implement Section 504 a top priority. Litigation arising out of Section 504 will generate such central disability rights concepts as “reasonable modification,” “reasonable accommodation,” and “undue burden,” which will form the framework for subsequent federal law, especially the Americans with Disabilities Act of 1990. Keep in mind, while Section 504 was a tremendous victory, the schools still had a long way to go. 504 just means accommodations–not inclusion. It means you have to allow us, acceptance is whole ‘nother thing.
IDEA 1975 started out as “The Education for All Handicapped Children Act,” establishing the right of children with disabilities to a public school education in an integrated environment. The act is a cornerstone of federal disability rights legislation. In the next two decades, millions of disabled children will be educated under its provisions, radically changing the lives of people in the disability community. It is important to note, that prior to this Act, only 20% of all children with disabilities were in the public schools. They were either kept at home not receiving an education, or they were in an institution.
It is important to note, and I’ve blogged about this before, that IDEA 1975 has never been fully funded. Ever. The changes that were brought by IDEA 1975 were extremely dramatic for the times. Remember, 80% of all kids with disabilities would now be entering the school systems. So our federal government said, “Hey, we understand that this is drastic, so we will fund up to 40% of the cost to educate each child with a disability.” To date, that funding has never been above 20%. This is why Full Funding of IDEA is one of my passions and why parents need to get more involved.
Just one generation away
Look, I am not excusing anyone’s abhorrent and discriminatory behavior or the turbulence that surrounds the IEP process. Or the bullying, the isolation, the exclusion that some of our families still experience today. But I believe it is helpful to understand the history. I was born in 1970. Therefore, my family is really just one generation away from this. When I was born, people with disabilities had very few rights. A generation later, we are demanding (and rightfully so!) full inclusion and full rights. But that doesn’t mean everyone is there. Old dogs can learn new tricks, some just take more time. And some of the newer dogs have been schooled by the older dogs, so it takes time. We are less than 100 years away from forced institutionalization and forced sterilization of disabled people.
It was just one generation ago that Moms were encouraged to institutionalize their disabled children. I cannot remember seeing any disabled children in my primary school, which would have been 1975-1979. I remember the “special classroom” in middle school, but I do not remember any in junior high or high school. Presumably, kids with disabilities were still being bussed to segregated classrooms. Sometimes I think about the kids who were undiagnosed and forced to suffer in a regular classroom, and how we made fun of them. I sometimes lose sleep over that.
But the point is, when you know better, you do better. Now we know better. Our kids are kids, just like any other kid. They love cartoons and ice cream and superheros and birthday presents…and they deserve an education just like those other kids. They just have different needs.
Also presumably, anyone who was working in education in 1975 is retired now. But those who were teaching in 1980 or even 1990 (when ADA was passed) may still be teaching and harboring antiquated ideas. Same goes for people everywhere that you may encounter in public. My Nan, I love her dearly and she had a good friend with a son with DS. This friend was of that “custodial care” generation who just kept him home, he never went to school. She just cared for him for his entire life. One time my Nan referred to him as a mongoloid, and this was in the 90s…my brother and I were mortified! “You can’t say that!” we screamed at her. She didn’t know. She was born in the early 1900s, that’s what people were called then.
Remember that the ADA (Americans With Disabilities Act) was not passed until 1990…that’s like…yesterday! This is all pretty new and we have much work to do. As Martin Luther King Jr said, “Morality cannot be legislated, but behavior can be regulated.” It’s time for us to keep moving, lots of parents before us worked very hard to get us to this point.
I hope that this post has been more interesting than what you found in high school history class. I tried to keep it short. Please get involved in disability rights advocacy so that we can change what the next generation will experience. For those of you who are thinking that I left out PARC and other important milestones…no worries–that is in tomorrow’s post. Tune in tomorrow morning for a synopsis of Pennsylvania’s part in the Disability Rights Movement.