Hohenstein: I know how it feels to be different

Along with my Republican colleague, Jason Ortitay, I am a prime sponsor of HB726 which will establish a Disability Inclusive Curriculum in Pennsylvania. I know how it feels to be different and excluded. I was 5 years old. I had learned to speak late, still could not read, and my parents and teachers were concerned. A hearing test showed I had a moderate hearing loss, so I was given a hearing aid. The earpiece, cord, and clunky mechanism strapped to my chest might as well have been a scarlet letter. When you combined that apparatus with big coke-bottle glasses for nearsightedness, to say I felt conspicuous is an understatement. Within months I showed improvement, and became a good enough student in school, college and then law school. All through that time, I remained plagued by my own sense of stigma. I only wore my hearing aid in educational settings, never in social ones. I learned to compensate for missing pieces of conversation and just got along. I shouldn’t have had to make this choice in order to avoid stigma.

It was not until I was in law school that someone recommended I get binaural hearing aids (one in both ears as opposed to the solo aid I had always worn). The change was dramatic, my ability to interact and get the entire context of conversations and lessons was more complete than ever before. Improvements in sound quality over the years helped as well. Now, older and wiser, I wear my aids in both ears in almost every situation.

My hearing loss is moderate. I am not deaf. The experiences of people with more profound loss, or with other more severe disabilities makes my loss seem like a drop in an audiological ocean. Yet my stigma, imposed from inside and out, is one that anyone – in particular, any child – can relate to. We all want to fit in to the group. To be different is to invite ridicule, scorn, and bullying. We need to change that so that all our children are included in their schools and communities.

I believe that every person has something to teach me. Everyone has value and if I ignore, isolate, or worse berate anyone, I am hurting not only that person, but also myself. The experiences of disabled people are quintessentially part of the human experience. Almost everyone will, at some point in their lives, whether permanently or temporarily, know the sensation of a disability. Those who live with permanent disability have a lot to teach us, even though it is not their responsibility to do so. Let’s be clear, recognizing the value of a person who walks through the world differently is not recognizing them as admirable for overcoming obstacles. It is not pitying them for all they cannot do. It is not placing them outside of our experiences and understanding. No. It is recognizing another human being as a classmate, friend, or co-worker.

HB726 has strong bipartisan support and is being considered by the Education Committee of the Pennsylvania House of Representatives. The Subcommittee on Special Education held a hearing attended by the Democratic and Republican chairs of the committee. Responses were positive. The Pennsylvania Department of Education has suggestions for how to implement the basic concepts of the bill, which is to have a K-12 general education (not special education) curriculum that weaves a thread of inclusion through all subjects for all students. This thread will provide disabled students examples of people like themselves making a difference and proof that their experiences and their lives have value. It will also provide non-disabled students a window of understanding so that they can better value the lives of all their peers. The advocates for HB726 tell me that disability is not a word they want whispered, but instead it should be celebrated so that their disabilities are viewed as a natural part of human diversity. The result will be increased understanding so that the disabled experience can be normalized by society.

I want to acknowledge the work of my constituent and citizen advocate, Lisa Aquila, for her work on HB726. The Coalition on Disability Inclusive Curriculum, which includes groups across the state like Disability Equality in Education, has created strong support for this bill. I am asking all of you, my constituents and neighbors, to reach out to friends and family across the commonwealth to advocate for Disability Inclusive Curriculum via HB726 with their local representatives.