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“Emily, you forgot to tell her I have special needs.”

My younger sister’s name is Katie. She is often described by her diagnosis of Down syndrome. To me, Katie is so much more.

One day my mom and I went to the bank to sign a loan for my first car. Katie insisted on coming. We went through the meeting with the financial representative and Katie and I were joking back and forth. As we were leaving Katie said, “Emily, you forgot something. You forgot to tell her I have special needs.” My heart sank. I knew why she felt this way: society.

When we reached the truck to head home, I broached the topic. “Katie, you are not ‘special needs.’ We all have ‘special needs.’ I have anxiety attacks which cause me to make adaptations to learn. You have Down syndrome which causes you to need adaptations in school. We all have strengths and challenges, but these do not define us; they make us unique and make life interesting!” I asked Katie what she thought her strengths were. Katie replied that she was cute, funny, and smart. I agreed, but took it further. “Katie, you are kind, caring, and make me laugh constantly. You make light of difficult situations. You are smart—the fact that I can make an iPhone passcode and you figure it out is ridiculous. You have the greatest memory of anyone I’ve ever met—remembering things from when you were 3 and 4, and will say, “When I was 4…. this happened” and generally you are 100% right. Katie, you are social, friendly, and …” the compliments continued.

Society defines Katie by her disability—Down syndrome, “a congenital disorder caused by the presence of an extra 21st chromosome. People with Down syndrome have mild to moderate mental retardation, short stature, and a flattened facial profile.” (American Heritage Dictionary) In our society, Down syndrome carries a negative connotation—it comes with terms like “dependence,” “unaware,” “stupid,” and inability to live a “full, active life.”

When Katie was in preschool, her best friend asked Katie about the “boo boo on her brain.” This was the first time Katie was directly made aware that she was different. Her friend’s parents had described Katie’s differences by using this phrase to avoid explaining a complex diagnosis to a 4-year-old. In doing so, they created a negative connotation that something was “wrong” with Katie. Something needed to be “fixed” and “healed” in her brain. Fact: Down syndrome is a chromosomal abnormality; it doesn’t occur in the brain. It is not a “boo boo”; it is an extra chromosome.

As adults, we teach our children how to understand and value individuals with disabilities. We influence whether our children accept, include, and welcome one another. We influence whether our children think “different” is bad.

Since I was 7, I have been concerned about how the world would view Katie. Would she be made fun of? Would she be treated differently? What would her future look like? Would she be able to have the same opportunities that I will? Will she go to college, get married, and have children?

By trying to protect Katie, I find I have been doing the very thing I worried about other people doing: I viewed and treated her differently. When I talk about my little sister, in order to help strangers not judge her actions, I have felt the need to explain that she has Down syndrome. My family treats her differently by not expecting the same of her that was expected of me at the same age, such as helping with chores at home. Passersby treat her differently when they say, “Oh, she’s so cute,” seeing her as an eternal child. They look at her as “less than,” and underestimate her intelligence. Even the genetic counselor jumped to conclusions before Katie was born, telling my parents that Katie’s quality of life would be low and that they should consider an abortion.

For years, her teachers have lowered their expectations by “dumbing down” school work and giving her worksheets that were too easy. Her one-on-one aides have done the same by allowing her to say that she can’t do a math problem when they know that she can, just to avoid the battle. Her school has refused to keep her in all-inclusive classes or include her fully in IEP meetings, and instead enrolled her in life skills classes where her activities are cleaning sweaty gym equipment and mopping floors.

These adults have made decisions that taught Katie she is different, that because of her disability she will accomplish less, and to focus on her weaknesses instead of recognizing strengths. As a society, we’ve failed Katie by introducing self-fulfilling prophecies into her thought process. Separating students who have different learning needs reinforces the stigma that there is something wrong with them that keeps them from being with their same-aged peers. 

Think of what you learned in school—did you learn more from the classwork and lessons or the social aspects of school? In Dan Habib’s TEDx talk, "Disabling Segregation," he asks the audience which had the bigger impact on their lives: their social or academic experiences?  A majority of the audience indicated they perceived the social aspects of school were more formative than their educational lessons. So why can’t our children with disabilities have the same social AND academic opportunities as everyone else?  Why can’t Katie?

This is why the SWIFT mission is so important.  SWIFT focuses on strengths and the belief that everyone belongs and everyone can learn.  When all students learn together, all students benefit.  Thirty years of research demonstrates improvements in social and academic progress for students with and without disabilities.    

By including all kids, even those with the most significant support needs, we are giving them the same opportunities as their same-aged peers in all aspects of education. We are opening avenues for learning for peers who may have different learning styles. We are creating opportunities for new friendships, greater access, higher expectations, increased school staff collaboration, increased appreciation of diversity and difference, increased respect for others, opportunities to master activities by practicing and teaching others, improved academic and social outcomes, and more. Our children and my sister Katie deserve access without stigma to these same opportunities.

-Emily Bourque

 

References:

Down Syndrome. (n.d.). The American Heritage® Science Dictionary. Retrieved October 17, 2016 from Dictionary.com website http://www.dictionary.com/browse/down-s-syndrome

Habib, Dan. (2014). Disabling Segregation [Video file]. Retrieved from https://www.youtube.com/watch?v=izkN5vLbnw8

My name is Emily Bourque and I am psyched to be working with the SWIFT program this year! I am a graduate student at the University of New Hampshire studying towards my masters in Occupational Therapy. I will graduate December 2016 from the program. I became involved in SWIFT as an intern through the NH-ME Lend Program. Throughout the last few years I have been involved in many organizations and clinical activities that have shown me the essence of Occupational Therapy. I truly believe that anyone can do anything that they put their mind to despite ability level, sometimes it just takes some creativity and thinking out of the box to help them achieve these things! I am passionate about working with children and adults with disabilities, helping them to work towards doing what they love to do and living their lives to the fullest! I have worked as a nursing assistant at a nursing home in the area with several patients, using an OT mindset to help them make adaptations to daily activities so that they could actively participate. I became a huge advocate for the best care for many of these residents. I managed a summer camp for several years and worked to change the camp structure to best fit the six children with autism who attended during my time there. I worked at a social skills camp this past summer and observed at Timbernook which is a sensory based outdoor camp as well. By far my most life-changing experience in the area of disabilities would be my little sister. When she was born with Down Syndrome sixteen years ago my family was told many of the negatives of the diagnosis from a genetic counselor. This counselor left out all of the positives. Katie has taught me to look at the positives of a situation and to focus on highlighting people's strengths. Her strength is her capacity to spread love and smiles to those around her. Katie has helped me to see that while society has a definition of 'normal', being 'normal' isn't always the best thing. Katie may have a disability, and many may define her as 'abnormal' because of it but she has so many other abilities that I don't have. I believe this of everyone in the world- we all have certain abilities and things that challenge us, but I believe in the process of constantly learning and growing from our experiences and surroundings. This process is where I have learned the most about myself. Because I have experienced having a sibling with a disability first hand, and have worked with individuals with disabilities through various volunteer experiences since I was young, I bring a unique perspective to the field. I am excited to share this with those I am able to work with. I'm looking forward to a great year and am excited to learn and grow from this experience!!