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.

on your 10th birthday, sweet son.

Today my son Bentley turns 10- and like every previous year I feel compelled to reflect on his life.

On the day of his birth we found out two important things. We found out we had a son. And we found out our son has Down syndrome.

Two years ago I wrote about a conversation with a man who thought that kids with disabilities should be in their own classrooms so other kids wouldn't have to be with them. I disagreed. I proceeded to defend my son and his right to be with other kids- but the damage had been done- I was faced with a man who is a teacher and is against the thing I spend my life supporting- that's a heavy burden.

A week ago Bentley went to his first ballet class. He watched the movie Leap mid summer and became obsessed with ballet. He worked diligently on all his chores until he had saved the money to buy ballet slippers. He wore his slippers daily- even in his sandals. He dances daily- observing carefully each dance move on the various youtube videos. When he realized I was willing to enroll him in ballet classes he begged me daily to call until I had scheduled his session. Last week I proudly dropped him off- watched from the studio door for a little while and then went downstairs to watch from the video cameras so I could watch Lily dance too. He was attentive. He was cautious. He was present. He was all the things one would hope. My heart was beaming. After class I popped in to ask the teacher how she thought it went- she looked at me with tears in her eyes and said, "That was hard.    That was really hard for me." My heart fell. Fortunately my son was in the other room changing out of his shoes so he didn't hear her. It's hard to sum up what a person means when so few words are used. However, I have what is called the gift of mercy- I also am highly empathetic and hyper aware of others and how they feel- sometimes these traits are a gift- sometimes they are not. I know what this teacher was saying. She was saying that she wants to teach children who will become ballerinas- she wants to teach children with perfect lines and perfect hair - children who fit in the ballerina world. While Bentley did all that he was asked- there was still a noticeable difference between the way he dances (at this point) and the girls in his class. I am regularly aware of the ways that Bentley is different- I am aware that this life is harder for him. But I am also aware- these challenges- these obstacles- they are not a reflection of him- they are a reflection of the rest of us. Regardless of this truth, I left the studio in tears.

It always takes me a couple days after these difficult interactions to get back on balance. I waiver between anger, resentment, and fear.... until there is a moment that jolts me back.

I was on the phone with a woman from Alabama who is a disability advocate. She and I were talking about how this work never leaves us- how it's always on our minds- so I briefly shared the ballet story. She paused and said in her thick southern accent, "Honey, now this woman isn't worthy to tie his shoes. Is she? She would likely learn more from your son than she would at Harvard."

And that was it. That was all I needed to hear to help me get back to work- back to life.


For ten years I have been shouting the worth of my son. From teaching people not to apologize with a new diagnosis- to fighting for his placement in preschool then elementary school to helping him be with typical kids in after school activities- the work is continues.

And so it is- on the anniversary of your birth- my dear son- I declare your worth again.

This year you are signed up for ballet, gymnastics, and horse lessons-
We filled out a school form because you want to help with the talent show at school, help with recycling before school, and collecting kudos.
You said you want to play the violin with the orchestra.
You'd also like chickens and a rabbit - oh and maybe a horse someday.
You daily talk about driving a car.
You give everyone the best hugs- including the bus driver who yelled out to me this morning, "This is the BEST part of my day!"
You love your toys. You love to play with Lily and Clayton.
You would probably live in the pool if I let you.
You dance with your heart and soul.
You are loud and funny and witty.
You have taught me an extreme amount of patience and to trust.

My promise to you as your mother is that I will always defend your worth- I will advocate and sometimes fight - to make sure that you have every opportunity that you desire.

My hope is that we continue to win over with love those who see you as anything less.

Happy Birthday, my dear son, Bentley.


** the owner of the dance studio called to apologize, but this issue as a whole is currently working towards being resolved **