worthy of you

I think sometimes I assume that everyone around me knows all the things and I am just late to the game. I was always a well graded student, but I found myself learning little. It's only been in my adult life that I have really learned to learn- I have been passionate about social justice issues for years- devouring every book and movie that discussed or enlightened me on a variety of issues.

For the past few years I have focused significantly on people with disabilities- and I have realized that we all have a lot to learn so I hope to do some posts...

One of the things that I think people don't realize is how recently we were institutionalizing people with disabilities. This practice began in the 1800's and there are still people who are living in institutions because when people fought to close there were some people who had no family.

Institutions are famously known for being overcrowded. Workers shoved food into children's mouths and they would aspirate and die. They were left lying naked and alone on floors. The conditions were disgusting. Geraldo Rivera created a famous documentary on Willowbrook that allowed the world to see what was happening. You can watch it here if you want., but it is a difficult film  I think it's easy to say- I'd never do that- or how could they do it? When children were born with disabilities families were encouraged to put them institutions. They were built in beautiful buildings with manicured lawns. Parents were often unaware of what it was like inside.

I am passionate about understanding institutions and deinstitutionalization for a few reasons. It's important to know history and to know my son's history- to know that 30 years prior he might have had a very different life. It's important to know history so that when someone treats my son unkindly I can have compassion- maybe they put a child in an institution many years ago and it's too painful to see him. Maybe the individual worked in an institution and it brings back trauma. The second reason I am passionate to learn and understand is that while many institutions were deplorable and inhumane- the even greater need we have is for community and connection. There are several homes being built that allow individuals with disabilities to live in a beautiful group home. These homes still don't offer community. It's a new form of institionalization.

Here's a quote to explain better what I am trying to say:

“One of the biggest similarities between institutional and community settings- that we have not overcome after 60 years of doing it with government assistance- is to overcome the abject loneliness that people feel- and the lack of connection. The lack of feeling like someone belongs to me and that I belong to them.... I get that people want to keep their kids safe- but quite frankly we haven’t figured out loneliness- people are lonely in the institution and they are lonely in the community. The question is: what’s the potential? The potential can never be realized unless people have the opportunity to move from being clients to citizens.” - Derrick Dufresne

There are so many well informed websites and books to read if you're interested in learning more about this topic- one website is this one: Parallels in Time.

My hope is that as you read this post and perhaps watch this 10 minute film I am going to suggest at the end- it will better help you understand what I mean when I use words like "fight" "advocate" "justice". In my lifetime we have passed major laws for people with disabilities. My lifetime. In my lifetime we have started including children in schools. In my lifetime legislation has been passed to allow medically fragile children have treatment at home instead of hospitals. These historical truths are important to know if we want to fully embrace and understand the movement that continues to happen. We are not at a place in society where I can sit back and eat popcorn- the work is still happening- the stigmas are still needing to change- and lives are still be impacted. 

I recently became aware of this film and David and I finally watched it yesterday. With tears rolling down my cheeks I am fully with the mother in her frustration as she changes her son. I know that look- that sense of helplessness. I am not able to understand their decision- I can't relate. But I watch because I want to understand. I want to enter into the kind of pain that would allow parents to make that decision. I identify with the passion of the daughter. She is the hero. She is the one who was so impacted by her parent's decision that it changed her- it allowed her to see the world in a unique and painful way. This story is fictional, but stems from a true story of a brother and sister. You can read more about the director's thoughts here: 

I find this quote from the director to sum up everything I am trying to say: 

It was near the end of the process, when I was writing the voice over script that I wrote the line, “I didn’t want you to think that nobody fought for you’. I realized why I hadn’t been able to let this story go. This was the core of our film, we need to fight hard to know each other, particularly when it’s difficult and our stories have been buried. If a story is hard to find, then it’s probably the most important one you can tell.


May we never repeat this. I sit in humility for the mistakes made by my ancestors- for the lack of understanding- for the indignity- for the ways they turned away from their children- for the doctors who said their lives would be better this way- I bow my head in shame- and then I lift it up and say- not for you, Bentley, for you- you will have us by your side- an army of people- always. You are worthy of love. You are worthy of us. And more importantly.

we are worthy of you.

****trigger warning- this is a difficult film to watch***

So Much Yellow from erica milsom on Vimeo.