The Right to be Disabled

In my last post, I wrote about one of the keynotes from the virtual SENIA 2020 conference, This month, I will return to that inspiration as well. Norman Kunc and Emma Van der Klift spoke about their own experiences navigating school and life with a disability. They made powerful and provocative points that have continued to echo in my mind for the last weeks. They have shown me how to look with different eyes. I invite you to let them do the same for you.

“You can’t learn to swim in the parking lot”

Norman is an accomplished public speaker and activist for disability rights who has Cerebral Palsy. He speaks about his experiences attending a segregated school and then fighting for the right to attend mainstream schools. He uses the metaphor of learning to swim when talking about inclusion. He says that you can’t learn to swim, even from the best teachers, if you are only practicing in the parking lot. At some point, you need to get in the pool. He had amazing therapists that helped him with his mobility and speech challenges AND he needed the opportunity to apply those developing skills in an authentic environment. He jokes that he needed to quit speech therapy to learn to talk with “regular” people.

But inclusion is not the only piece of the puzzle. It must be well supported so that the students do not drown.  Emma Van der Klift had every opportunity to attend great schools and still struggled and eventually dropped out at 15. Her experience with school was very negative because she never had the accommodations and support, or more importantly, the understanding she needed to be successful in that environment. She speaks about learning in later life that she has Autism and continues the swimming metaphor. You can’t learn to swim when you are drowning. You need the lifeguard to pull you out when you are going under and you need the teacher/coach to intervene and teach you as you gradually develop skills to swim on your own. 

Their stories and this metaphor connected well to my own beliefs and understanding about managed inclusion and is why I do the work that I do. To learn more about Norman and Emma, check out their site and their series of Conversations that Matter. They are provocative and inspirational. However, it is how Norman described accommodations that really made me see Disability Rights in a different way. 

Correcting a design flaw

I will summarize here, but please, take the 11 minutes to watch the interview with him linked below. It is not the keynote from SENIA, but captures the essence of what struck me so deeply. He says it so much better than I ever could.

He asks a provocative question. Is it normal for people to have disabilities? If you think that something went wrong and he should not have Cerebral Palsy, then when you put in a ramp to a building, you are doing something to accommodate him and his mobility impairment. You are locating the disability within him. You may believe fully that he has the right to have a ramp and the right to enter the building, but you are doing it to accommodate him.

Now, if you accept and understand that disability is a part of the human condition and that people have the right to be disabled, then you are placing disability within the larger social context. Now when you put a ramp in the building, you are not doing something for Norman, you are correcting an architectural error. The building had been built thinking that people with disabilities would not use it, or more likely, without thinking about them at all. The ramp corrects that error. It is the same in schools. Our traditional educational systems were built with the idea that students with disabilities would not be a part of it. They are exclusive by nature and people with disabilities have had to fight to be included over the years. Schools never accounted for the neurodiversity that is part of our society. It did not acknowledge that people have the right to be disabled. So when students with disabilities began to be included in schools, we needed to provide accommodations for them so they could access the curriculum. We did something for them and placed the disability within them. Norman argues, and I concur, that when you accept that disability is a part of the human condition, when you embrace that neurodiversity is the norm, then of course individuals with disabilities will attend schools. There will be students with Cerebral Palsy, there will be students with dyslexia, there will be students with Autism Spectrum Disorder in our schools because they exist within our society. From that stance, accommodations and universal design for learning correct the design flaw in schools that did not account for and include all of the neurodiveristy in our world in the original model. It is not something you do for individuals like Norman, it is something you do to improve the design flaw of schools. 

I am sure that my explanation may have piqued your interest, but I promise you, Norman does a better job, Please listen to his story. Please listen to the stories of the neurodiverse. They have the right to be disabled and we have the responsibility to address the design flaws in our schools and our communities.

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