Test #1

Takeaways from my first experience testing Hearken prompts

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In order to socialize with people, you must be where people are socializing. That may sound straightforward, but it’s important to remember when considering what happens when the places people are socializing aren’t easily accessible to people with disabilities. Focusing my attention on how this effects the community of adolescents and young adults with cerebral palsy, I understand that inadequate disability access leads to issues with feeling socially excluded.

Inadequate disability access often prevents people with CP from physically participating in society. A qualitative systemic review on child and youth (2–25) experiences and perspectives of CP found that “youth’s accounts focused on social inclusion and the physical environment (i.e. services and supports, transportation, accessibility, accommodations, safety, and weather), the role of family and peers and participation (i.e. leisure and recreation, school and civic engagement).

Despite being one of the most accessible cities in the US, New York City is not easily accessible for people with disabilities. It took Zach Anner, comedian, actor and writer with cerebral palsy, over 5 hours to get a rainbow bagel with friends, a trip that Google Maps stated would only take 28 minutes. Using Jennifer Brandel’s approach of Public-Powered Journalism, I hope to use Hearken to understand what questions the community of young people with CP have about accessing New York City.

The possible prompts that I plan to use to solicit the questions about NYC’s disability access are:

1. What questions do you have about traveling in New York City by yourself
2. What questions do you have about accessing the subway?
3. What questions do you have about traveling by yourself on Access-A-Ride?

Next was to test my prompts to ensure they resonated with the community. I reached out to my network at The Henry Viscardi School (HVS), which serves students with severe disabilities. As I’ve mentioned in a previous Medium post, I worked as a TA at the school, so I was able to test my prompts with the students and members of the school’s staff.

I spoke with Monica Adams, a guidance counselor at HVS. She suggested I replace the word “questions” with “worries” and asked me to recall my experience in school. “Think about when teachers asked you at the end of class if anyone had any questions,” she reminded me, “students don’t have any.” However, phrasing the prompt around their worries asks students to recall their anxieties and concerns, of which, she said, they have many.

An HVS student with CP was the first to test my prompts. When first writing my prompt (1), I decided to include two backups (2 & 3). In the event that prompt 1 was too broad that it offered few responses, prompts 2 & 3 ask the community to recall a specific experience; and that is exactly what happened. Prompt 1 was too general. The HVS student even said, “this question is hard.” However, growing up in NYC, the student did have specific questions about the subway (prompt 2). She asked, “How will I know the subway car has a spot for me and will there be a way to secure my wheelchair down?”

Her response to prompt 3 produced more concerns than questions about Access-A-Ride, an NYC transportation service for people with disabilities. “Drivers need more patience. They need to understand that we need time to do things, like put on our jackets,” the student complained. Issues such as having to schedule rides a day in advance and only up until 5 PM, prevent the student from easily accessing the city.

The student also introduced me to an issue I had not considered: limited access on commuters trains leaving NYC. The student recounted a time when they struggled to board a train heading out to Long Island. Because the platform was not leveled with the train, the student and the student’s chair had to be carried onboard. Having to be picked up by a stranger and carried onto public transit is not even close to acceptable disability access, and is especially discouraging for a young person who is hoping to be more independent.

Testing my prompts with my HVS community was insightful. It helped fine tune my strategy for soliciting questions from the community. Implementing suggested changes, such as maybe replacing “questions” with “worries,” allows me to better target the needs of young people with CP.

Although helpful, this test was only the first of many. It’s imperative that my prompts reflect the CP community’s varied experience. In order to gather a wide range of opinions, I plan to reach out to organizations like The Cerebral Palsy Foundation (CPF), and United Cerebral Palsy (UCP). I hope to build off of their suggestions, and those from my HVS network, to ensure my prompts cater to the CP community.