11/26/2019 by Share Your Story

Disabled America – Claim Your Seat At The Table

Cienna Ditri was tired of seeing disability issues ignored so she decided she would ask all the presidential candidates their positions.


We’re in the 2020 election cycle. As we get to know the candidates there is an opportunity to bring disability issues and chronic disease issues to the forfront. That’s what Cienna Ditri is trying to do.

A GAP IN THE CONVERSATION

On a sunny warm evening in April I flip on the TV. The evening news is playing and every story is centered around the candidates for the 2020 presidential election. As I sit on my couch and listen, I realize that the candidates are being asked what seems like questions on every topic, except for the one that matters to me.

My name is Cienna and I am a disabled 20-something woman with a service dog. I have almost as many conditions as I am years old and spend more time with my doctors than with my friends.

My community has big, important questions, but why is no one including us in the conversation? The only time I hear my community mentioned is when we are a side item on the political menu. Isn’t it time that we get a seat at the table?

HOW TO BE HEARD

As I thought about the issue more, I became certain that my community would have specific chronic or disability issues they would want to have addressed. The National Health Council says that 133 million (or about 40% of) Americans currently live with a chronic illness, with that number expected to grow to 157 million by 2020! After learning these statistics I was even more shocked that there has yet to be a single question asked concerning the priorities of our community. It struck me that if these questions were asked to the candidates, not only would we finally have answers, but candidates would actually start considering our needs as a population.

I opened up my laptop and started searching. What I found was an outcry from chronically ill people all over the country. Many had noticed the lack of representation and wanted their voices heard. All over social media, I found people using #cripthevote to try to bring awareness to the issues that mattered to them and to voter accessibility across our country.

That evening a fire was lit deep within me.

COMING UP WITH A PLAN

If no one else was asking Presidential candidates the questions that mattered to my people, I would. A vision was born: A movement of people with chronic conditions, with or without disabilities (physical & mental) coming together as a group demanding a seat at the table.

The plan:

  • All of the 2020 presidential candidates would be interviewed using these questions
  • The goal being to ask the candidates the same standardized questions, so that people can easily compare them to one another and decide who best fits with their views
  • All interviews would be available on the same platform and be accessible to everyone (written form, spoken, and closed captioning).

However, I never wanted these questions to only represent me, but the chronic conditions community as a whole. I began making a list of issues that were important to the chronic-conditions community, from healthcare, to affordable prescriptions, accessibility, education, disability services, and everything in between. The list of issues was endless.

CASTING A WIDE NET

The easiest way to find out what mattered to people with chronic conditions was to ask them, so I worked with Patients Rising to create a survey! People with a wide variety of conditions will have access to the survey. By doing this we can find out what topics are consequential to the chronic-conditions community as a whole.

I read posts from the chronic-conditions communities on Instagram and Twitter to determine the categories. Topics were what the communities were most passionate about. When the survey reveals which specific questions the community want asked, I will share those questions with you all.

As someone with a chronic condition, disability, or as a caretaker, what questions do you want candidates to be asked? What disability issues are going to matter most to you in 2020. Fill out the survey I created below to have your voice heard. Together we can all have a voice at the table!

WHAT QUESTIONS WOULD YOU ASK THE CANDIDATES?

TELL CIENNA IN THIS SURVEY

 


Cienna Ditri is a designer, communications manager, and disability advocate. She creates fun, engaging, andCienna Ditri educational social media content to raise awareness for chronic conditions and service dogs. She has worked with chronic-conditions’ communities representing patient perspectives including Project Sleep, Love What Matters, and Patients Rising. Cienna shares her love of fashion to help make the fashion industry more inclusive. Cienna also works to make service dogs accessible for others like herself. In her spare time Cienna loves to travel, surf, shop, and play the saxophone. You can follow Cienna on Instagram or Facebook / YouTube as “Chronically Persevering”.


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