Recently, I shared a blog, “My Struggle with the Word “Disabled” and asked for others to share their perspectives. I am floored by the response. It is my goal, with permission, to elevate and celebrate the stories that have been shared with me. In this second installment in this series, Hillary Goldthwait-Fowles shares her thoughts on disability. Hillary is an Assistive Technology Specialist with 20 years of experience, an Adjunct Faculty Member at the University of New England, and the brilliant author of One Size Does Not Fit All: Equity, Access, PD, and UDL.
Perhaps we do not want to eliminate disability with instructional design, but eliminate environments that create additional barriers to those with disabilities. When Meyer, Rose, and Novak suggest that the curriculum is disabled, not the individual, they argue for a mindset shift – looking at the environment/curriculum as the problem, not the individual with the disability. That’s been at the crux of school for as long as I can remember. We always assume something is “wrong” with the learner, and not in the curriculum or in our learning environments.
When Luis Perez says in his tweet “I am disabled,” I hear him ask us to see him for who he is: an individual with a disability who, like everyone else, has remarkable abilities, gifts, talents, and expertise. His disability is the fabric of who he is. Disabled is not a bad word. Nor is Autism. Nor is ADHD. Nor is Dyslexia. Nor is Anxiety. These conditions, for many individuals, are a fabric of who they are. We’ve been conditioned to believe that disability or disabled is a bad word.
I had a student I was assessing for SAT accommodations. Of course in the report, we are required to use identifiers (i.e, learner with ADHD, Dyslexia, etc). Instead of just selecting a checkbox and including it in the report, I asked, “How do you identify yourself”? She looked at me quizzically and replied, “No one has ever asked me that before.”
This individual then described her challenges in accessing the curriculum/content in one particular way (the way we’ve been conditioned: pen to paper, physical books, etc). This was highly empowering for this individual as it gave her a platform to self-define and voice her challenges. This was an individual who identifies as a person with a disability, one that is not limited, but requires specific supports to have agency, independence, and ownership of her learning.
Disability is defined as an impairment caused by the condition. However, given what we know about neuroscience and UDL, this impairment is based on comparison to the AVERAGE person which we know to not be completely true (the myth of average). However, according to the Americans with Disabilities Act (ADA), “In the context of the ADA, “disability” is a legal term rather than a medical one. Because it has a legal definition, the ADA’s definition of disability is different from how disability is defined under some other laws, such as for Social Security Disability related benefits.”
The ADA defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity. Those limitations can be exacerbated by the environment (i.e, lack of curb cuts or elevators) by society, and, as we know, in our education system (i.e, lack of options, choices and scaffolds like requiring a student with limited hand mobility to use a pencil). That’s the ruse. No one performs the same way as everyone else.
It’s just that for people like you and I (the mythical average), the environment is optimized for our experience. We are working within a legal model, a medical model, a social model, and a humanitarian model. Is there a blend of these models? Is one supposedly “better” than the other? I don’t have the answers. Just a desire to honor and celebrate the variability of learners and support my friends in the disability/disabled community in their desire for being seen, heard, valued, appreciated, and accepted for who they are, not for what various constructs define them to be.
The call for educators is to design a learning environment and content that proactively plans for learner variability, accounts for disability, and honors individual autonomy and agency. As we continue to move through this paradigm shift from “power” to “empowered”, these conversations must continue.
Contact Hillary directly at <HIllary@hillaryhelpsulearn.com>