A little over a month ago, I took on the task of trying to write a string of articles to help define intellectual disability (ID). The approach I chose would be to: first, explain what ID is, second, discuss the importance of ID awareness and pride, and third, discuss the stigma around ID. However, this task proved to be far from simple. I started my research by looking at what ID is and how to define it. As I began researching, I realized that there is a lot of information out there specifically related to defining ID. Everything I read provided a slightly different definition for ID that ultimately made it harder to define. Each article highlighted different aspects of ID. For example, some articles focused heavily on intelligence quotient (IQ) tests while others stated that IQ tests should not be the determinate for whether an individual has an intellectual disability. I began questioning if trying to define ID was the best starting point and ultimately decided to change my path and began researching ID awareness.
Read more: Understanding Intellectual DisabilityIt became immediately clear that while a plethora of information existed around defining ID, there was seemingly nothing related to ID awareness. I had to expand my search. I hoped that looking at the more expansive disability awareness articles would mention ID. After trying many search methods, I found one article that discussed the importance of ID awareness. However, even though the article emphasized the importance of raising awareness and creating a general understanding for what ID is, the majority of the article focused on the stigma and negative connotation surrounding intellectual disability.
As I started writing the awareness article, it became clear to me that in order to discuss raising awareness about ID, I had to discuss the stigma associated with it. I also realized that in order to discuss raising awareness and the stigma associated with ID, I first had to define what ID was. The cycle of trying to figure out where to begin continued for a while. I could not figure out a clear way to write about ID because there was too much or too little information available. In addition, the information that was available was often confusing to understand or did not align with what other medical professionals were saying.
In my research, I would find doctors and researchers defining ID and requiring assessments to diagnose while others would not. The gap of information–and the variance in the tiny bit available–makes it all easily misconstrued. This issue only adds to the negative connotation surrounding ID. More people with ID need to speak out about their experiences and what intellectual disability is. In my search, I came across a few TED Talks given by people who have ID. In their talks, they discussed what it is like having an ID, how it defines them, and resources they utilize to raise awareness and advocate for ID as a whole.
The TED Talks provide helpful information about ID, but there is still an incredible need for additional resources that clearly explain what ID is. As a non-disabled special education attorney, being able to explain what ID is to parents and how it can impact their child in an academic setting is extremely important. Sometimes a child will receive a diagnosis of ID and the parents don’t know what that means for their child moving forward. With the resources currently available, it could be even more confusing for parents to understand what ID is. Being able to define ID in a clear way is the starting point for making ID research more accessible to everyone. Once there is a clear definition, individuals and organizations can expand upon diagnosing ID, the stigma surrounding ID, and raising awareness about ID. This can only occur if people understand what ID is and then can easily navigate resources to find subsets within ID that they want to learn more about.
Kendall Murphy is a staff attorney at Project HEAL. Kendall received a bachelor’s degree in psychology from The Catholic University of America. She went on to receive her Juris Doctor from Elon University School of Law. While in law school, Kendall served as a Project HEAL trainee and as an intern for Disability Rights Maryland. She also worked as a research assistant at Elon Law researching law regarding students with specific learning disabilities and the Individuals with Disabilities Education Act (IDEA). Prior to law school, Kendall worked as a behavioral therapist for students with autism in the District of Columbia Public Schools.
