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NCHPAD - Building Healthy Inclusive Communities

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Growing up with Spastic Cerebral Palsy


The world I grew up in was one where I was engaged, active, and connected with my peers with and without disabilities. My environment was focused on person-centered approaches and inclusion. I define inclusion as active participation and engagement with my peers, with and without disabilities. When I needed support, I engaged the people (professionals, family members, neighbors, and friends) that I needed, and created the tools and supports I needed, if they did not already exist, to thrive.

The diagnosis of spastic CP was not something I wore like a heavy weight. Growing up, I had no idea that I had a lesion on my brain. The way I moved was just how I moved. I found ways to make what I wanted to do happen –for example, if I wanted to play field hockey, I played the game, and I played it with my peers without disabilities. I followed the rules of the game and played with the field hockey stick duct-taped to my walking device. I was an active participant with my peers, and I secured the accommodations that I needed. The field hockey stick that I used might have had a slight curve so that I could hit the ball/puck a bit more easily; that curve of the stick made my access and participation easier.

I also experienced some challenges from spastic CP.  Examples of challenges included access within my physical environment, as well as misinformation about my condition and erroneous assumptions that were made about my capabilities due to the visual presence of my walking devices.

Early on, I learned to engage with people and systems, including medical, fitness, and community systems. My mission as early as I can remember was to begin to positively change existing attitudes, perceptions, and misinformation about disabilities. I learned to hunt for, find, and use information, research, and data to create creative alternatives to the “box.”  I’ve had the opportunity to become a professional in the disability field, specializing in program development and policy to move beyond the construct of the “box.”

The concept of disability and diagnosis can label, categorize, and stigmatize individuals. For over 20 years, I have worked to change how the concept of disability is perceived.  I work to inspire and challenge people to move Beyond the Box.

Over the course of the next three months, the “Beyond the Box” series will introduce a perspective on individualized care and decision-making where the individual with a disability is an active partner.

This series will explore the relationship dynamics that can initially exist between people with disabilities and the professionals who work with them. It will examine the often unintended effects of the Medical- or Disease-Oriented model.  “Beyond the Box” will explore the influences of a person-centered approach, partnership, and advocacy to move beyond labels and diagnoses.

Copyright Disclaimer:  This copyrighted article is reproduced from the "Endless CapABILITIES Blog", sponsored by The National Center on Health, Physical Activity and Disability (www.nchpad.org). NCHPAD is part of the UAB/Lakeshore Research Collaborative and supported by Grant/Cooperative Agreement Number U59DD000906 from the Centers for Disease Control and Prevention (CDC). It may be freely distributed in its entirety as long as it includes this notice but cannot be edited, modified, or otherwise altered without the expressed written permission of NCHPAD. Contact NCHPAD at 1-800-900-8086 for additional details. http://blog.ncpad.org/2012/03/19/beyond-the-box-part-i/#more


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