Last summer I worked with one of our Project RISE students, Zoe Joyner, to create a podcast series for the Weekly Wisdom blog. Zoe has a passion for storytelling, and over the course of a summer internship, she created the “Dear Nondisabled People” series with five episodes featuring different disabled self-advocates. Zoe developed the interview questions, led the majority of recording, and performed basic editing on the finished interviews. In the process she also learned about the past, present, and future of a community to which she belongs. After her summer internship with Disability Wisdom, Zoe has begun her freshman year at Spelman College, where she is majoring in history and communications.
This week I am presenting our first episode in which Zoe and I interviewed one another. It is a kind of “practice” episode (and my voice is a bit worse for wear because we had to re-record it after a technical glitch). But, this episode captures the lived experience of a young self-advocate alongside my own assessment of where we stand in the disability community, particularly in the United States, and where we are headed. Click the link to listen, or if you prefer, read the transcript below.
Listen to Episode 1
Zoe Joyner: Welcome to the first podcast of Dear Nondisabled People. My name is Zoe Joyner. I have a vision impairment called CVI or Cortical Visual Impairment. It’s when the brain has trouble processing what it sees. I describe it as looking through Swiss cheese.
Arielle Silverman: My name is Arielle Silverman, Principal of Disability Wisdom Consulting and the primary writer on the Weekly Wisdom blog. Thank you for tuning in today and this first episode, Zoe and I are going to co-host and ask each other some questions. As far as my disability background, I am nearly totally blind. I can see some light and shadows due to a condition I was born with that is called Leber’s Congenital Amaurosis. So today we are both going to be sharing a little bit about our own experiences about disability as well as some knowledge that we have from the disability community. I’m going to start by asking Zoe a couple of questions. First of all, Zoe, could you tell us about some challenges you’ve faced in your life and how you have overcome those challenges so far.
Zoe: My challenges have been speaking up with teachers. There was also challenges when I was little of figuring out if I had any other disabilities like ADHD because it was hard for me to focus because of my vision. I am attracted to motion, so it was a lot of hit or miss things. Also, I have learned to think that I am a trailblazer because a lot of kids with my vision impairment aren’t as academically focused. Since it is a brain injury, they have a lot of other challenges. I have learned to speak up more, especially through email because I can be very self-conscious so it’s easier for me to email a teacher than talk to them face-to-face. And also, I learned that writing a letter to my teachers during the beginning of the year can stop simple things like forgetting to enlarge things and hitting that in the beginning, so I don’t have to remind them so much throughout the year. I have some things to fall back on if they’re not doing it.
Arielle: In a related question, how has your childhood experience impacted your career choices so far in your life?
Zoe: I really liked history growing up. I used to like Math, but it got a little bit more visual like with Geometry. I’ve always liked stories, so that’s why I am interested in podcasting, and not only like reading stories, but I also like hearing about others and sharing the with the rest of the world who can benefit.
Arielle: Great, well thank you very much. You have some questions for me??
Zoe: what is the mission of your organization
Arielle: So, I am simply a solopreneur working for myself. It started in 2016 and the name Disability Wisdom has a double meaning. First of all, I believe very strongly that all of the knowledge and wisdom about living with a disability should come from those of us who actually have disabilities. The main objective of Disability Wisdom Consulting is to bring out the lived experiences of people with disabilities to educate others, both formally through research projects and interviews as well as informally through these podcasts, blog posts, and training materials that are developed collaboratively by people with disabilities. The other meaning of the term disability wisdom comes from Erving Goffman, a Sociologist who wrote about stigma. He used the term wise to refer to what we would today call allies, people who don’t themselves have a characteristic, but who empathize and understand the experiences of people who do have that characteristic and people who treat those of us who have a stigmatized characteristic in the same way as people who don’t have that characteristic. My goal with Disability Wisdom is to help people become allies by harnessing their natural curiosity and willingness to work collaboratively with us and support us as allies.
Zoe: has recent legislation affected your organization or people with disabilities in general?
Arielle: there is some legislation recently that has been proposed that could be problematic for people with disabilities. One example is the ADA Reform and Education Act that was passed in the House of Representatives which would weaken the enforcement of the Americans with Disabilities Act. The whole point of the Americans with Disabilities Act or ADA is to ensure that places of business that accommodate the public are accessible to people with disabilities. In order to be effective, the ADA needs to be enforceable and people need to have a mechanism for complaining if they identify violations. The newly considered legislation would weaken the ADA by making it harder and more complicated for people to enforce it and make complaints. That has been concerning a lot of people. The other major issue that has been coming up a lot recently is proposed legislation that would weaken Medicaid services. A lot of people with disabilities have incomes below the poverty line because they are unemployed or underemployed or have preexisting health conditions that employer coverage health insurance may not cover, so they literally need Medicaid to survive. Also, a lot of people with developmental and intellectual disabilities rely on what is called Home and Community Based Services, different kinds of personal assistance, people who can help them remain in their homes and communities. Those services are funded by Medicaid, so threats to Medicaid could threaten the livelihoods of a lot of these individuals. I will say that I think the main way right now that this proposed legislation has impacted the disability community is by bringing us together across impairment lines, in a lot of cases to fight and oppose the new legislation.
Zoe: How do you think the life of people with disabilities has changed over the past fifty years?
Arielle: there have definitely been a lot of gains, some steps forward and some steps back. For example, legislation was passed in the 1970s that requires schools to accommodate students with disabilities. It used to be the case that a child in the United States couldn’t necessarily get into a public school unless they happened to have parents who fought for them and had the resources to get them in. Now, it’s enshrined in the law that children with disabilities are entitled to a free appropriate public education in the least restrictive environment. Basically, that means in most cases, kids can go to their neighborhood public schools with their siblings and they can get the accommodations they need. So that has been a huge change. But there have also been some steps back. For example, blind kids used to be educated in segregated schools, for example boarding schools for the blind and that had its own problems but one of the good things about it is they often received early instruction in Braille and other critical blindness skills. Now, these kids are being educated in their neighborhood schools but because of funding deficiencies and short staff, a lot of districts just don’t have a lot of teachers who are qualified, so these kids aren’t necessarily getting Braille and other critical blindness skills. So that’s one way that legislation has moved us far forward but there have also been steps back. I also mentioned the Americans with Disabilities Act which has also created a lot of opportunities in employment and access to the communities that we live in. It also has created its own challenges. People are afraid of lawsuits and so they end up kind of hiding their disability prejudice in other ways. In the 1970s, an employer might come out and say, “we don’t want you working here; it’s too much of a liability.” But in 2018, people are afraid to say that but they still think it, so instead they kind of disguise their discrimination in other ways saying we have already filled the position. They come up with excuses and that makes it more difficult for people to advocate for themselves. One final change that has been huge in the disability landscape has been technology that has allowed on one hand access to a much wider array of information and devices but on the other hand, if the technology is created in such a way that it is not accessible, sometimes that ends up closing doors as well. So, one example of that might be appliances like microwaves, washers and dryers that used to have dials. For a blind user, the dial might not be accessible, but you could put stickers on the dial to make it accessible. Now that we have these new-fangled touchscreen devices, it is much more difficult to access those devices and make the right modifications. It is a lot of two steps forward one step back, and there is definitely potential for the lives of people with disabilities to get better, but we have to work together as a community and be vigilant.
Zoe: do you think our country is going in a positive or negative direction?
Arielle: I would say overall that we are going in a positive direction. I want to be optimistic. I think the clients I have worked with in the last two years have genuinely been interested in including people with disabilities and understanding that we have things to contribute, that we’re not just recipients of aid. I think there is a lot of genuine interest and understanding that disability is not just an obscure thing, that it actually does affect up to one in five people and that including people with disabilities should be a priority. So, I think that overall, we are going in a positive direction, but there are competing interests that are creating threats to some of our basic programs like Medicaid, some of our healthcare programs, and the ADA. We need to be vigilant to those threats and how to acknowledge some of the competing interests, acknowledge that they have validity, and then try to negotiate compromises with lawmakers to ensure that our rights are still being protected.
Zoe: do you have any final thoughts?
Arielle: The only last thing I would say is that I am very appreciative to those of you listening to this podcast series and reading the Weekly Wisdom Blog, both those of you with and without disabilities. For those of you without disabilities, I think that an important first step to becoming allies is to listen to what we have to say and to read what we have to say. I would encourage you if you are working in the disability field in any way or working with an organization that serves people with disabilities in any way, that you pay attention to what we have to say, read our blogs, read our literature, listen to our podcasts and videos and contact representatives from disability organizations to learn more. I would also say the same thing for disabled people to learn about other impairments that you might not be familiar with. The best way to learn is to talk to us, listen to us, and interact with us. Zoe, is there anything that you want to add?
Zoe: I think this podcast is not just important for allies, but also within the disability community. I didn’t have many mentors growing up and I didn’t meet another person with a vision impairment until my junior year of high school when I did the LIFE Program through the Department of the Blind and Visually Impaired. They taught me that I could be independent.
Arielle: Mentoring and friendship within the disability community is very important and something that we can’t take for granted because a lot of us do grow up in families, schools or communities where we are the only one or think that we may be the only one who has a particular disability or has any disability identity. Any way that we can bring people together is really valuable. Thank you very much for tuning in. We will see you on the next episode of Dear Nondisabled People.
Zoe: See you next time.