I have been embarking on my journey toward receiving my Masters of Science in Education. This summer one of my courses is Special Education Law. Here is a journal entry from this week:
Journal
As I was reading this week, I came up with many questions to which I want to research further. I have many filters in which I am able to access and judge information presented:
Parent of a disabled child. Teacher of the gifted. Former art teacher. I have organized this journal entry from the standpoint of a parent of a disabled child. Accessing this information and reflecting on my own experiences is cathartic and creates meaning for me.
As a parent, questions flooded my mind as I made myself through the readings and videos in this module: Social and Historical Contexts of Special Education. Particularly, the documentary Unforgotten: 25 years after Willowbrook was very hard to watch. I made myself watch the two hour documentary in it’s entirety. I felt obligated, as a parent of a disabled child, to thoroughly soak in information and relive this tragedy because I and many others still fight on the daily to ensure it (abuse, neglect…) never happens again. These are some of my questions:
What if I gave birth to a disabled child in the 1950s or 1960s? Would I have been forced to institutionalize her? Would my child have suffered more? Would she have been accepted as well into society? Would she be able to grow emotionally or academically?
If I gave birth to my daughter in the 1950’s or 1960’s it is very likely that she would have been institutionalized. Despite all the wonderful change that has occurred over the past 50-60 years regarding disability rights, education of the disabled and their care, I remain a burnt out parent at the end of each day. Without the state provided services we have access to now (only because we moved to a city to get access to them), I would have given my disabled daughter Izabelle up and into the hands of a state institution. My family would have convinced me. I hear on the daily from my mother and grandmother:
“I don’t know h0w you manage her.” “I didn’t want this for you, Rachel.” “It’s just so unfair!”
When my daughter was diagnosed with epilepsy at age four and then at age six and onward more labels added: ADHD, anxiety, learning disabilities spanning from dyslexia to dyscalculia, developmental delay… I was in disbelief. I was in denial. We pointed fingers and blamed the schools. I was confused, scared, devastated and worst of all I felt alone. As a single working mother, I navigated the health care and educational system. I found many allies along the way. Kristine Binette from the Epilepsy foundation of New England, our phenomenal caseworker’s Ricia and Amanda and other mothers of similarly disabled children remain my harbingers of faith and hope that someday, Izabelle would get the care she needed and that I myself could make it through each day without checking into a hospital...myself (I tried one time and they sent me home with valium).
If I gave birth to my daughter in the 1950’s or 60’s Izabelle would have suffered from unfathomable abuse and neglect in institutions like Willowbrook. She would have been that naked child in a straight jacket covered in her own feces, as pictured in the documentary Unforgotten: 25 years after Willowbrook. (I am brought to tears at the thought.) I, myself on the other hand would probably have had an easier life for the time being. I would have continued my life without all the daily worry I suffer from now. When visiting my child, I would have felt my actions to be completely and utterly selfish. I would have felt enormous guilt and shame. Knowing myself, finding one bruise would have had me in an outrage… but I would have remained powerless without laws such as the Individuals with Disabilities act (IDEA) to protect her.
If I gave birth to my daughter in the 1950’s or 60’s she would not have been accepted into society the same way she is now. She would be the subject of bullying. Her peers would have shunned her. She wouldn’t have had the social skills she has now because she would have been placed in homogenous grouping with others like her and wouldn’t have had the opportunity to interact with non-disabled/neurotypical peers (Backward Children and Forward Teachers, 1913). I would have felt more shame and embarrassment than I do today in the community in which I live. In the 1950’s or 60’s public buildings wouldn’t have been accessible to us during the times that Izabelle has had to ride in a wheelchair.
If I gave birth to my daughter in the 1950’s or 60’s she would have backtracked significantly educationally. She would have been the culprit of ableist thought (Eliminating Ableism in Education, 2002) and likely no one would have taken the time to find out how she learned best. Her gifts would have remained latent.
My daughter wasn’t born in the 1950’s or 60’s. She was born in the year 2007. Disabled veterans like Judy Heuman and many others paved the way for her so that she could benefit from a public education that is catered to her needs. Izabelle’s educational team at Farrington Elementary School in Augusta, Maine is phenomenal. In her third grade year, she spent at least 60% of her time weekly with same age non-disabled peers and established relationships that will last her a lifetime. She has grown academically despite the damage to her frontal lobe (due to her chronic seizures) and received her first educational and school citizenship awards. The inclusion model has been a game changer for my child. There is a time and place for independent work with Izabelle’s special education teacher and ed. techs but I believe that the most significant growth has occurred due to the feeling of being a part of an inclusive school community that believes in her.
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