How Life Happens: History of the Disability Movement

I mentioned before about the Partners in Policymaking program that Chris and I are participating in this year. It is eye-opening to us and really grounding us in what we want for our family and how to make it happen. I encourage everyone who has a disability or a child with a disability to find out if your state sponsors this program and enroll. It will change your life!

Ok, that is my plug for this program and now I am going to do a series of posts on key learnings from the Partners meetings. This entry will be what we learned in the first meeting which focused on the History of the Disability Movement. We had Guy Caruso and Colleen Wieck (the creator of the Partners in Policymaking program) as guest speakers and they were captivating. I sometimes think history lessons can be a bit dry but this session was anything but dry.

Where to begin......

Whew! This session really lit a fire in my belly. The way people with disabilities were treated in the no-so-distant past made me sick to my stomach - literally!

Disabled people have been dehumanized, devalued and neglected for most of history. Typical life experiences of people with disabilities is - devalued by society, put into negative social roles, rejected....segregated....and congregated, marked and labeled in negative ways and oppressed....punished.....even physically hurt.
As far back as in ancient Greece, infants with some imperfection were left outside to die
In the 1800s in America there was a rise in the use of "asylums", which were institutions where people with disabilities were kept in cages, closets, cellars, stalls, pens! Chained, naked, beaten with rods and lashed into obedience. There was a photo essay on the deplorable conditions the children and adults lived in titled Christmas in Purgatory. The images and descriptions of the living conditions would make you sick. I can't even imagine how those parents felt when the learned what was happening to their children.
Late 1880s to early 1900s there was a movement to prevent the birth of those with disablities and we saw forced sterilization and the rise of the Eugenics Movement (Breeding for improving genetics). By 1933, 26 states had sterilization laws inspired by eugenics. This movement fell out of favor after Nazi Germany
1950s saw the rise of the parents movement. Parents started to question the "experts" when they said nothing could be done for your child and they should be put away. The parents banded together and started to advocate for laws that improve education, rehabilitation and civil rights for their children with disabilities. By 1950 there were 88 local groups in 19 different states and they went by the name National Association of Parents and Friends of Mentally Retarded Children and are presently known as The ARC.
In the 1960s some money was designated for services for the disabled when JFK acknowledged his sister Rosemary.
In the 1970s deinstitutionalization began and the focus was put on the creation of community services. This was done largely in part from the influence of Wolf Wolfensberger who was an incredible advocate for the disabled. He was influenced by the inclusive society in Scandinavia and wondered why we couldn't be more inclusive in the USA and set out to change our policy.

Ok, let me take just a minute and say that I was born in the 70s. This is NOT ancient history. That people were treated this way in my lifetime still takes my breath away. Additionally, there are STILL institutions in existence today. We even learned of at least 1 lawsuit from this year - 2010 - about people being kept in shackles in institutions! We still have a LONG way to go for people of all abilities to be included properly in society, but there is hope. And the parents movement was successful in making some major changes and laid a solid foundation for our generation to continue to Disability Movement and fight for the rights of our loved ones.

Parents drove change. The Civil Rights movement paved the way for the Disability Movement and the Disability Movement leaders worked with the Civil Rights leaders to start making changes.

In 1975 the Individuals with Disabilities Education Act (IDEA) was passed. This is the first major legislation to require all school districts to develop and provide a free and appropriate public education (FAPE) for all children and youth with disabilities. Prior to this act, children with an IQ lower than 55 were not allowed to attend public schools.
People with disabilities started to move into group homes and attend special education classes (more on each of these topics later in the series)
Ed Roberts founded the Independent Living Movement
1990 the Americans with Disabilities Act (ADA) was passed which prohibits disability discrimination by public entities. This is one of the most significant civil rights documents of the 20th Century!
1998 Assistive Technology Act passed.

Now, that is a lot to digest. We spent 2 days on this topic and I know I'm not doing it justice in this one post but hope that it brings the Disability Movement and the timing of it to the forefront of your mind.

I leave you with this quote from Ed Roberts -

Disability is an equal opportunity club and any one of us can join on any given day.