Tuesday, July 10, 2007


Why am I starting yet another blog? Well I guess I have decided that this is a more popular place to blog than the other two places I have begun blogs at. And perhaps I will stick with it longer as I read so many blogs here. But why blog at all? I have trails of thought I want to write down. It is not enough to think and spin - I want to leave a mark.

So for those who are curious enough to read, I suppose you might be curious to know who I am . I think of myself as a disability activist. Most of what I do every single day of my life all day long relates to disability in some way or another. Some may think it is because I am disabled, but it is not. Some may think it is because my son is disabled, and while that may be closer to the truth, it also is not.

How I came to be a disability activist can be attributed to a set of books that my elementary school deemed so important that every classroom had a set. They had gray covers and were biographies of important people. I read and reread only a few of them: Helen Keller, Jane Addams, Dorothea Dix, and Susan B. Anthony. These women became my heroines and led me to read voraciously about women in history. So why not become a women's rights activist?

When I was 14, I decided to volunteer at the local institution for adults and children with disabilities. My guess is that Dorothea Dix led me there. She worked to create institutions that were separate for prisoners and people with disabilities and mental illness. She had seen unspeakable conditions that people lived in and thought that people should be treated humanely. People should be clothed, have beds to sleep in and not be chained. Early institutions for people with disabilities as awful as they were - were much better than the conditions people lived in when housed with prisoners.

But it was Helen Keller who led me to the Annie Sullivan ward. Ms. Sullivan was Helen Keller's teacher and this ward for children who were deaf and blind and otherwise disabled were named after her. The ward was painted bright colors, but was starkly bare, except for the oak cupboards that lined the walls.

The 60 or so children sat or laid on the cold linoleum floors or were stood in standing frames. It was important that each day the children were dressed and gotten out of bed. (Why? I guess this was why they were considered progressive.) 3 or 4 workers took care of the children. First they needed to be cleaned up and dressed. This was no small feat as many of they smeared their bodies with their shit over night. Some were put on toilets to sit and sit and sit. Sometimes they would be forgotten and would be found after breakfast or lunch smearing the walls.

Breakfast and all other meals were the same. Carts arrived with food in metal trays, pulverized beyond recognition. Sometimes something smelled remotely familiar, but most often nothing like food at all. All of the children had to be fed. It was a race to see how quickly the children could be fed. The only break the aides would get was when they finished up quickly. So they raced without talking to the children or even letting them properly swallow. As much food rolled down their faces as slid down their throats. Children who didn't want to eat didn't. Children who were too much trouble to feed would be fed only as much as patience allowed.

Meals were the only punctuations to the childrens' days. There were no toys to play with. There was no television roaring. There was no music to muffle the sounds of the perpetual cries and shrieks.

Children lay on the floor in their food stained clothing until lunch time. If there was time between the inevitable diaper changes and placement in standing frame or other seemingly forward thinking torture chambers a few might get their clothing changed.

Lunch was the same as breakfast and dinner more of the same. After dinner all the children needed to be washed and dressed for bed. It all had to be done before the night shift came on. I usually went home when the night shift aide came on - if they came. Only one person was there for the 60 children thru the night.

It was a horrid, smelly place and yet I went every Thursday until I went off to college. I don't really know why. I felt I made a difference. I did things with the children no one else did. Maybe the kids got 5 minutes of my singing them a song or reading them a book and their lives were a little better. My mother decades later told me she hated picking me up because I stunk so badly. She never told me and I didn't know.

I went off to college and explored ideas I never knew existed.


Josie Byzek said...

Hi Susan,
Welcome to blog-land! Great start.

Ashley's Mom said...

Your life sounds a small bit like mine. I never set out to be a disability activist, but here I am.

I have 4 children, 3 of whom have significant disabilities, and one is deafblind. Your description of the children you worked with makes me even more sure why I want to be the activist I am.

I also have a blog - pipecleanerdreams.blogspot.com