When Being "You" is a Form of Activism
You know what’s ice cold these days? The newest trend since goths vs. jocks? Being yourself! The art of self-promotion is palpable; just look on social media. Everyone is selling a version of themselves; the more unique, the more dope. Many people with disabilities also develop and embrace an innate sense of self. My son and many kids and adults I’ve met with an extra chromosome love who they are. They truly are dope! The problem is they’re often not allowed to be themselves and still fit in. The trend doesn’t extend to them.
If they’re even given a chance to be included in a regular classroom or competitive paying job (which is far too few), the onus is always put on the person with the disability to change to fit in. Society often can’t be burdened to do the simplest of accommodations to allow them to show us their gifts. When a person with a disability shows us who they are in the classroom or at work it becomes a form of activism. As if to shout: “LOOK AT ME! This is who I really am. Take it or leave it!” Too often society looks the other way.
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Children with disabilities are supposed to be educated alongside their typical peers to the maximum extent possible. Supports for these students should be exhausted before moving to a more segregated setting. It’s federal law in the United States! But it’s not what’s happening for far too many students with disabilities almost a half a century after the Individuals with Disabilities Education Act (IDEA) passed. Unemployment for adults with developmental disabilities stands at 80%! Many adults with ID work in sheltered workshops getting paid well below minimum wage.
In my current state of Washington, only 8% of students with Intellectual Disabilities (ID) are included in the regular classroom for the majority of their day. Washington state ranks amongst the lowest in the nation for educational inclusion, but the numbers in supposedly inclusive minded states aren’t where they should be either. In fact, a study from the American Journal on Intellectual and Developmental Disabilities found that inclusion rates for students with ID are actually declining since the 1990s. Nationwide, only 17% of students with ID are spending more than 80% of their day in general education.
The fact that someone like my son, who has Down syndrome, spends more than 90% of his day with his typical twin in a regular classroom is an anomaly here in Washington state and in many places across this country. Even though the law says it should be the norm. Legally a student should start in regular education before a more restrictive setting is ever discussed.
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Now I’m taking it a step further. Not only do I want you to include people with Intellectual Disabilities, but I want you to truly accept them for who they are. Most people don’t really get what this means. This is how I know: they’ll say something like “Oh sure, we accept them, but they have to keep up in class.” No, actually they don’t! That’s what the Individual Education Plan (IEP) is for: to give specially designed instruction, accommodations, and modifications so a child can be educated in the least restrictive environment. Not to keep up, but to make meaningful progress in light of their disability.
We know behavior is communication. When a student with a disability struggles in a regular classroom they’re often telling us that they’re not afforded the same right to be themselves as other typical students.
Too often, employers or schools ask: “How do we change this person so they can be included?” How do we turn this question around? Instead, how can we change the environment to include this person?
Universal Design for Learning (UDL) supports the idea that all learners are different, and providing different modes of representation in learning can help reach all students. UDL teaches us that it’s the environment, not the student, that needs to change. Here’s a great video from Understood.org showing how UDL works in a classroom.
Following the heart of IDEA also leads to acceptance of students with disabilities. Really exhausting those supports is an important first step to acceptance. Just because a student needs direct support throughout their day doesn’t mean they’re not benefiting from everything a regular classroom provides. Just because a student with ID doesn’t master all the content, doesn’t mean it wasn’t worth the teacher’s time.
Inclusion shows us that life can be about so much more than just keeping up. It’s about meeting people where they’re at, supporting each other to move forward, and accepting people for who they are.
If parenting a child with an intellectual disability has taught me anything it has taught me this: It’s time we embrace the person and the process, and stop obsessing about the end product. So, thank you to all the “activists” out there who are showing the world who you really are, and asking us to meet you where you’re at.
To read more from Courtney or to follow her blog, Inclusion Evolution, click on the link below.