Dear Nondisabled People, Episode 1: Arielle Silverman and Zoe Joyner

Photo of Zoe Joyner
Photo of Zoe Joyner

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.

The “With Autism” Series [Repost]

My friend joked that they needed a bumper sticker that said “Autism is my co-pilot” since they were clearly driving with autism (as opposed to driving while Autistic.)

This weekend, I’m at the National Federation of the Blind of Virginia convention with 22 blind students! While I’m off doing that, I’ll leave you with this humorous piece about the limitations of person-first language. Be sure to get your gear if you’re a “person with autism” or know someone who is!
The “With Autism” Series

Blind in the City: Human Guide 101

“Human guide” is a common term for two people walking together with one person guiding the other, or with both pedestrians physically connected in some way. Over my lifetime, while walking from one point to another, I have received human guide from many sighted people and some blind people. I have also guided some blind people and a few sighted people.

Many sighted people can be effective guides for blind people. However, the guiding process can sometimes be awkward at first. I’ve learned that awkwardness often arises from a fundamental misunderstanding of the purpose of human guide for the blind pedestrian. I hope to clear up confusion around the purposes of human guide in this post. I will then address some details of how to be an effective guide.

Purposes of Human Guide
A common acronym used in the blindness community is “O&M” which stands for “orientation and mobility.” Orientation involves identifying where one is in space, and figuring out how to get to a desired destination. Mobility is the mechanical process of moving to that destination and, ideally, avoiding obstacles or hazards along the way.

Most blind pedestrians use some sort of “mobility aid” to move through space independently. Most commonly this is a white cane or a guide dog. Both tools can effectively help the user avoid obstacles and follow a clear path through space. Most blind people without physical disabilities need relatively little help from others with the mobility process. We can manage steps, bumpy terrain, and other physical challenges without a lot of support.

Orientation is a different story, however. Typical sighted travelers rely on a variety of visual cues for orientation, including maps, street signage, and visual landmarks. As blind people, we often lack access to some or all of these orientation cues. We can learn to orient ourselves to a space over time, but when first visiting an unfamiliar place, human guide can be very helpful for orientation.

So although human guide can serve several purposes, the primary benefit is to assist with orientation and navigation. Human guides can share, through vocal or physical cues, information about which direction to travel, when to turn, and when a destination has been reached.

Sometimes though, people assume that blind people need help with physical mobility more than with orientation. Sometimes people may try to guide us in ways that control our movement rather than providing navigational cues. The most common example I encounter is the individual who tries to guide me from behind. This person may walk behind or very close beside me and attempt to steer my body with their hands. They may poise themselves to catch me from falling or to guard me from obstacles. This may be driven by the sighted guide’s desire to keep me in their line of sight. However, guiding from behind is not an efficient way to give me orientation cues. If I’m in the lead, and I don’t know the route, I am apt to miss turns or pass my destination. Furthermore, being pushed forward or from the side can disrupt my center of balance. If I do happen to bump an obstacle (that my cane misses for example) while being “guided” in this manner, the consequences can be quite dangerous.

Once it is understood that the primary purpose of guiding is orientation, then it makes sense that the guide will want to be in front. The person being guided can follow behind and will know to turn, stop, etc. when the guide does the same.

Notably, while orientation is usually the primary purpose of human guide, sometimes a good guide can also offer physical support, for example if the person being guided has a physical disability or limited balance. However, even in those situations it is usually most effective for the person receiving guidance to be behind the guide leaning on them, rather than the reverse. Good guides can also help with obstacle avoidance, but again, this is best accomplished when the guide is in front. The person being guided will model their own movement after what the guide is doing, such as stepping up or down when the guide is felt doing this action.

Tips for Effective Human Guide

  • Before initiating human guide, find out if the individual wants to be guided verbally or physically. Sometimes just giving some verbal directions, or walking beside the individual without physical contact, is preferable, for instance if the individual is using both hands, or is uncomfortable with physical touching. If you are guiding without physical contact, stay in front of or beside the individual, and verbally let them know if you are turning (or simply have a conversation and they will follow your voice cues). Be sure to give the individual enough space to sweep their cane if they are using one.

  • In conventional human guide in the United States, the individual being guided will simply hold the guide’s elbow and walk a half-step behind, or beside the guide. If an adult is guiding a child, the child may hold the adult’s wrist. In different cultures, conventions for human guide may be slightly different.

  • You can have a natural conversation during human guide, and do not need to announce steps, turns, etc. since the person following you will pick up on those cues. Most people continue to use their cane or dog while being guided.

  • Never push, pull or steer a person’s body or their accessories (backpack, purse etc.), unless you know the person well and you know that form of guidance works well for them. In typical human guide, the person being guided is always in control of their movement, and they can disengage from the guidance at any time.

  • Variations: Sometimes two individuals may walk beside one another with elbows linked. This is not for guidance purposes, but to help the two people (both blind, or one blind and one sighted) stay together in a crowd. Occasionally, a group of blind people may decide to form a “train” with each person holding the arm or shoulder of the person in front, and a guide at the very front leading. This is not an efficient way to travel long distances, but may work well for very brief trips like guiding a group of blind people to a specific table in a busy restaurant. And finally, for two close friends or intimates blind or sighted, holding hands is a fine way to travel.

From the Disability Wisdom Community: Interactions that Make Us Go Hmmm

At the end of my sophomore year of college, I was sitting outside studying for my last final exam before summer break. I remember it was the final for evolutionary biology, my least-favorite class that semester, and I was really hoping for a good grade on the exam. I was absorbed in reviewing my notes on my braille notetaker, my cane stowed behind my feet on the ground, when an unfamiliar man approached me and asked for directions to the Administration building. Since I happened to know where it was, I obliged. But midway through my pointing him in the right direction, his entire demeanor changed. He must have seen my braille display on my lap.
“Whoa, you’re blind!”
“Yes, I am” I said, going back to my notes.

Instead of heading off to find the Administration building and letting me study in peace, the man then announced that “I’m your angel today.” He mumbled something nonsensical about God and then tried to give me a $20 bill, which he said I could use to buy food. I politely declined a few times before he mumbled something else about praying for me and walked away. While I don’t remember all the details, I do remember wishing I had asked him, in all seriousness, to pray for me to get an A on my final.

I’m pretty sure that most, if not all, disabled people have had at least one puzzling interaction with a stranger. As the stories below illustrate, sometimes strangers say things that are insensitive and hurtful. Other times, we are told or asked things that aren’t necessarily harmful, but are just so puzzling and weird that we’re at a loss as to how to respond. Here are some examples. [Pro tip: If you don’t want to unintentionally create an awkward situation with a disabled person, before saying something, ask yourself if your comment or question would be cool to say to a nondisabled person? If not, then try saying something else instead. “Hello, my name is…” is a good start.]

  • “I would kill myself if I had that” referring to my condition.

  • All I can say is Mardi Gras is a very… Very… Interesting time of year.

  • Recently, a guy walked beside me for over five minutes telling me how sad my life must be because I was blind. But that he said he understood what I was going through because he was losing his hearing but he had a good sense of smell so that made up for it, but my life must be so bad and sad because I don’t have that extra sense.

  • I had one lady at an airport tell me that if I put my fingers together, I’d be healed.

  • Oh and always there’s stuff like “have you tried this nonsense/snake oil/my cousin sells…”

  • I have a intersectionality story. Years ago, when I was dating my first girlfriend, This couple came up to us and started telling us the good news. My girlfriend and I were both wearing rainbow shirts and holding hands, so we looked at each other like, “oh crap, here comes some attempt to save us from damnation or something for being gay.” We spent the next hour or so hearing about if I let them pray hard enough for me, God would give me my sight back. Years later, I wish I had reminded them that, according to my beliefs, they were insulting God, because He made me this way and he doesn’t make mistakes.

  • And of course, there are those people who think that my kids are always helping me, acting as cited guides. Once, when my son was just two years old, I was holding his hand as we approached an escalator, obviously intending to help him, but, a lady came up from behind us and said, “oh, that’s so nice you have a child who can help you do things like escalators. “ she didn’t get a very friendly look from me, but, I left it alone and just continued on our way, deciding to pick him up and carry him down the escalator instead. I think it’s startled her that I did that LOL.

  • So many stories, where to even begin… I had one stranger come up to me and ask “What did your parents do to piss God off for you to be born blind? It must have been something really bad.” I also had a server once try to help me by grabbing my hand and slamming it ontop of a pizza. This was right after she told me not to touch it because it was hot. Hot indeed it was. Nothing says finger food like having your palm covered in tomato sauce and melted cheese.

  • A friend of mine was once asked if he read books with his mind.

  • Stranger at SubWay restaurant: are you blind? (From across the store)
    Me: yes????
    Stranger: have you ever considered killing yourself?
    Me: (long pause) no
    Stranger: you should.

  • I have cerebral palsy and I had this said to me. “Oh my sister had that for a few months when we were growing up. My parents just gave her lots of fish oil.”

  • When I was 12 and traveling downtown on an orientation and mobility lesson, a woman approached and said, “honey, I just wanted you to know even though you can’t see, God at least blessed you with being pretty, so you will always have someone to take care of you. Make sure you say a little prayer and thank him for that now.”

  • When I was in the fourth grade we once had a substitute teacher.
    I had never met him before this day.
    I entered the classroom and had hardly got myself situated at my desk, and he grabbed my hand without saying a word and forced me to touch his beard.
    To say I was creeped out would not do this justice.

  • My mom is in a nursing home, and I visit every day. About every other time, regardless of how professionally I dress, or how confidentl I walk in, some staff member asks me sweetly: “Are you a new resident?”

  • Last Saturday, I was doing homework, (as you do), and I had the house to myself. During one of my breaks, I was listening to music and dancing and decided to have some gumbo. I ordered from Postmates, all was good. An hour later, the lady pulls up, and I wave at her from the porch. As she gets closer, she’s all friendly and stuff. When she went to hand me the bag, it occurred to her that I couldn’t see, and she went, “Oh… oh my God. Baby…” she then trailed off, then ENTERED MY YARD to give me a FULL BODY CONTACT HUG. She apologized for her to guffaw in assuming I was normal, (sarcasm). She gave me my food, said God bless you, and left. The gumbo was good.

  • So I’m going to skip past all the regular interactions of prayer and healing, saying that they would kill themselves if they were me, etc. and jump to like you said, some of my wildest ones. One of them was an evangelical who actually grabbed me during a college tour to pull me aside because he was there with his daughter and wanted to pray for my site. I can laugh about it now but I actually almost broke out into tears then because it was my very first college tour and it was absolutely humiliating and he actually put his hands on my face until I pushed him away. The second one was another evangelical group that came up to my husband and I at Union Square, Park in NYC.was the most bizarre story, but they came up to us and they were telling us how they can sense others auras or something to that extent and they could tell us words that had meaning to us. and of course to me the first word they said was dog, as if a dog and a blind person are these two crazy things to put together, and I told them that no, the word dog has no significance to me because I actually really hate dogs. They then in puzzlement were like oh, we thought for sure that word would be special for you and I was just like nope. Then of course they got to their point which was that they noticed I am blind and if they could pray for me. I told them that that’s not necessary and I actually wasn’t really welcoming prayer at that moment and I was just trying to eat lunch with my husband on a beautiful day. Then I told them that my husband and I had been talking about the Middle East and the Syrian war as it was during the peak of the Civil War, and I told them that I’ve been watching these awful videos of children being bombed, and parents screaming over the corpses of their kids bodies, and I would actually really love if they could pray for Syria and pray for the US to stop bombing it and for the Civil War to end. they actually stopped, and said no. They literally said they would not pray for it. And that’s when I told them it was time for them to leave our table.

  • I’m not disabled but my daughter is blind. I was recently telling a student about this and how it’s interesting that the visual cortex can be re-purposed for other things like tactile and auditory processing in blind folks…it was not an emotional conversation, just a chat about science and I happened to mention my daughter because I’m a mom and moms insert their kids into conversation whenever they can. Suddenly, another student I had never met before came exploding into my office (I guess she was eavesdropping from the hall??) and said, “my heart is breaking for you that you and your daughter have to suffer with her disease!” I was totally shocked but calmly said, “no need for that, neither of our hearts are breaking but are you here for office hours?”

  • I was in a Lift to the doctor’s office last Friday. My driver asked if I was religious, so I shared that I grew up as a non-practicing Baptist and attended a Lutheran denomination house church recently, but that I wasn’t really religious. He asked if anyone had ever prayed for me before, and I explained that it made me uncomfortable to have people praying for me in public back in the south, because it draws so much attention and people stare. I suggested that if he wanted to pray for me on his own time, that would be fine. He was extremely polite about it, but he asked if we could pull over in the doctor’s parking lot and if he could pray. I wanted to say no, but I also didn’t want to make the interaction awkward. What would it hurt to let him pray, even if I didn’t like it? He was being so nice, after all. So, he pulls over, and he takes my hand over the back of the seats. He starts praying, really feeling the Jesus as he’s snapping along and feeling it. He asks me to repeat, “Father, I accept healing into my eyes.” I do it, a little reluctantly. He laughs and says, “Naw, you gotta say it like you mean it.” So, I laughed it off and tried again. Finally, we were done, and I reminded him to pull up to the doors for me. I got out and went on my way. He was extremely nice and polite about the whole interaction, but I was still very uncomfortable. I felt like I wasn’t in a position to tell him no. I couldn’t exactly bail out of the car on the side of a busy street or in a big parking lot. Even if I did, he would have jumped out after me to help. Blind people don’t get left alone. I don’t really believe in prayer as a medical miracle, and engaging in prayer is a very personal experience I’m not comfortable sharing with a stranger. Religion was never a part of my life, so it feels a little alien. As a woman in a car with a male stranger, as a blind person in an unfamiliar area, as a blind woman who is expected to be nice to people and accept their help, as a relative of sincere Christians, I felt like I had to let him pray. I felt like even a polite refusal would have made me the bad person in this situation. I think that’s why I’m so uncomfortable with people praying for me in person. I don’t feel like I have the choice to tell them no.