Imagining the Future: Increasing Collaboration Among Pediatric Medical Providers, School Based-SLPs, AAC Specialists, Educators & Parents
There are days when I feel like I am not making any progress. I was having one of these days when I reached out to a good friend and she encouraged me to carry on despite my slump. So, I have decided to continue blogging on the issue that is of utmost importance to me, even before I hone my writing skills to a level acceptable to myself (and the general public) .
I believe that the issue of importance is one of civil rights. Specifically, the rights of all individuals with disabilities, their parents, their friends, the people who support them and their communities. We can look back over the last 100 years and pat ourselves on the back for the progress we have made, but we need to be cognoscente that these are short term wins (Kotter, 1996) and we have a long road ahead.
I tend to focus on the wrongs that are being committed against individuals with disabilities and I am comfortable with the words discrimination, abuse, failure to educate and neglect when we consider many aspects of the care and education of this diverse, heterogeneous population that we identify as disabled, handicapped, presenting with special needs or other labels deemed fitting. However, talking and thinking about the civil right's issues that surround these individuals makes people feel uncomfortable. If we are to be exposed to their realities, it seems we only have the stomach for uplifting stories, usually stories of how a “typically developing” person did something great for someone with a disability. The alternative, an event we find seriously surprising; a person with a disability does something “typical”.
I started a Facebook page for my pending nonprofit Augment Oregon and immediately began to recognize a pattern. When I posted a rant, no one responded by checking the coveted LIKE button. When I posted a quote or link with a picture, a happy smiley picture of a child with or without a disability, I got significantly more “LIKEs” than without. I get that exposing ourselves to the unfortunate realties for others can make us feel sad, this due to the amazing ability we humans have, empathy. And, experiencing empathy when it isn’t a pleasant feeling is something we can tolerate for only so long, in small doses if you will.
I have been fortunate to know many individuals who work with individuals with disabilities and they are so positive and hopeful about the future and the potential impact of their work. I observe them carefully, quite honestly wanting to experience their rosy outlook for myself. But, I have to be true to my own experiences and the need I feel to present my observations despite the fact that they are not always the happy story we want to hear. There is room for both perspectives, the one that celebrates the wonderful events that are occurring and are improving the lives of individuals with disabilities, but also the events that are or are not happening that contribute to a population that has not yet, in my opinion, seen their rights fully realized.
I have a professor who, on more than one occasion said, you are experiencing “culture” when you experience something shocking and no one else around you even bats an eye. More often than not, this has been my experience as an educator in the k-12 public school system and as a member of American society as a whole. I was appalled when Diane Sawyer (whom I respect) said of the Pope, “…he even kissed a disabled man.” Was everyone else watching the news that night appalled as well? Did they even notice? Or worse, did they think kissing a man with a disability was something to revel at? Do we still believe that disability is contagious?
As my husband and I watched a Toast to 2013 on T.V. New Year’s Eve, we watched a story of how a high school basketball coach allowed a teenager with disabilities to play the last few seconds of a basketball game. He shot a basket and scored for his team in the final moments before the game buzzer rang. I want to understand this; he got to play a few minutes of an entire season? That’s it? All the nondisabled people, for lack of a better term, gave up a few minutes and are heroes on the nightly news? I saw the look of pure joy on the student’s face, it was a valuable experience for him, but am I the only one that thinks we can do better? Way better?
I am raising a daughter with special needs. I can create a world that that tells her she was born perfect, just the way she was meant to be. I can include her in every aspect of our lives, I can have high standards for her and I can provide experiences as well as accommodation and tools to help her access those experiences when needed. But, I have to let her walk out our door. To date I have completely failed to get many influential people in her life to support my vision for her. Why? Because we live in a culture that has yet to respect the value of every individual. People with disabilities are victims of abelism (Hehir, 2005), a phenomenon that is often subtle and hard to capture in the moment, but it is there, a duplicitous form of discrimination imposed on those with disabilities by able bodied or “typical” persons, often resulting in unnecessary barriers laid in their paths.
My hope in blogging about the civil rights of individual with disabilities and the realities of abelism is to change what we see when we encounter people with disabilities. We can challenge our preconceived notions, we can base our beliefs on education and research and the inherent value of every person, but have to be willing to see, first.
Hehir, T. (2005). New Directions in Special Education: Eliminating Abelism in Policy and Practice. Campbridge, MA: Harvard Educational Publishing Group.
Kotter, J. P. (1996). Leading change. Harvard Business Press.