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Moving Beyond Policy: Embracing Social Equity Through Participation

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Editors

Sorcha Hyland
Lara Mann
Deb Griswold
Elizabeth Kozleski

We shall not fail or falter, we shall not weaken or tire – neither the sudden shock of battle nor the long drawn trails of vigilance or exertion will wear us down. Give us the tools and we will finish the job. 

Sir Winston Churchill

Sir Winston Churchill, British, Prime Minister

It was just about four AM on a warm August morning. I just landed in Kansas on my first visit here. My phone was discharged (dead), and I had no clue if the cab service I booked had shown up. This is because I was seven hours late. My flight which was scheduled to land at seven pm had now made it at four AM. Suddenly, I felt a tap on my shoulder and a man told me he was my cab driver. That was my welcome to the Midwest and Kansas. This driver had waited for me for over seven hours because he said, he couldn’t have left me alone. He also took calls from my family and ensured them that he was there on time to help me when my flight landed. This might be surprising and different, but I have always felt that if I believed, it happened.

My experiences in coming to the University of Kansas has been a magical ride that I can only picture as being a long and beautiful story. In late September of 2017, I was unhappy that in spite of having some of the best laws on enabling people with disabilities, there was a wide gap in implementation. I had already decided to change my doctoral program and work towards building a career around disability and challenges that students face. Having lost my vision at just two, I have always been comfortable as to who I am. Speaking to Dr. Skrtic, at that time was a revelation. We spoke about violation of policy, the difference between the letter and spirit of ADA as well as the implementation challenges that still remained in the twenty first century.

American with Disabilites Act of 1990

I have always faced challenges at school and at work. Back home, a policy barely exists to assist or help people with identified disabilities. It is the family who is responsible for the child. My parents were well educated and very open to experiences. They brought me up to the best of their abilities. I remember my father trying to explain the meaning of a triangle early in my middle school years. The elephant in the room was however wider acceptance. Like here in America, the problem was the mindset of the wider society. While some people accepted, most others did not. What however I found different in America was the laws already enacted to protect the rights of people with disabilities.

I have found that more people who participate in creating a system, the better it works. It is people who enact and implement policy that matter. MY road to success has been paved by teachers, leaders, professionals, university faculty and friends who have had faith and believed. The biggest thing that I have been allowed to do is to participate on an even field. This has been with the objective: I can do things differently and do them well. 

Back in India when I was just one, I was diagnosed with a tumor. Over the next two years, my parents fought to cure me of Leukemia. There were many who stood with us, but many also felt that living with permanent blindness meant I had no advantages in the world. In a country where education is valued and families give up everything so that their child can study, my parents had to struggle to find schools for me. It was a challenge in explaining to teachers and school leaders that I was no different from the average five-year-old. 

Something I learned from my psychology teacher when I was 15. She said “unless I let you do things on your own, how will you understand your limits and cross them? “

“Unless I let you do things on your own, how will you understand your limits and cross them?”

Alice Sheppard- Choreographer

When we did find the teachers who allowed me to participate , it was an experience, as it is here in Kansas. I have found that when people decide to participate to see change, we start seeing a difference. System wide change requires us to create a structure of idea of participation that influences and touches many.

Many people come up to me and ask how I live and manage so far from home. My only answer is that I am at home. I am not living away from it. My support systems are stronger here than they ever were. I have met some extraordinary people in my journey. These aren’t people whose names are in any textbook or hall of fame. They are simple folk who have removed prejudice and accepted social equity as a personal philosophy. Take the motel owner I met on my first day here. I stepped out and knocked on the door at five AM. My debit card did not work, and I was in danger of not finding an accommodation. Looking at me, he asked me to first sleep and freshen up before we decided what to do. Historically, powerful objectives have been achieved through a movement. A social movement consisting of people who have a message and then take this message into society. I feel that if we are to enrich ourselves, we need to be a part of this movement to instill belief in others. When I was looking for changing my job at the end of 2015, senior executives asked me how I could hold down a difficult position if I had a disability. These were executives from powerful fortune 500 organizations. I attended over 50 interviews with not a single successful placement. These are all multinationals with headquarters in America and the U.S.  It is more important to do something rather than just having a policy on diversity. It is important to let people participate in the process to build a system of acceptance.

Sumanrath Sumani, 2018 Chancellor’s Doctoral Fellow, Special Education

Suman Rath is a second year doctoral student in the department of special education working within Policy and Systems change. Prior to this, he has worked within the corporate sector particularly  human resources, teaching and the nonprofits. His experiences include implementation, policy formulation and building systems for change. In over 5 years of experience he has created and structured change initiatives across a range of sectors including education and schools.


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