DiversifYA: Jake Joehl
|October 28, 2014||Posted by DiversifYA under Disability and Illness, DiversifYA||
Jake Joehl was born in St. Louis, Missouri and lives and works in Evanston, Illinois. He is the Social Media Assistant for the Illinois-based nonprofit organization JJ’s List. JJ’s List has a website where people can post reviews of any business they’ve been to, and the website focuses on the disability awareness–or lack thereof–of these businesses. (How cool is that?)
1. How do you identify yourself?
I identify myself as a person with a disability, although I’ll take the disability first if someone is really in a rush and that is how it comes out. When referring to my blindness, I will accept either “blind” or “visually impaired,” or even “vision impairment.” “Visual impairment” is also okay, as is “visually challenged,” which I’ve heard on occasion. Just please don’t call me “handicapped,” a “total,” or a “Partial!” I do not want to be pitied by anybody because of my disability. I’ve wondered for quite some time though, whether people who acquire a disability later in life through whatever means, prefer to be known as “disabled people” rather than “people with disabilities.”
2. What did it feel like growing up blind?
I am the oldest of 6, and I have been blind since birth. The condition I have is called Leber’s Congenital Amaurosis, where the retina of the eye doesn’t develop properly. I also have a sister with this condition. I had a very happy childhood. My parents both let me try various things just like other kids, and they are keenly aware of my shortcomings. I’d have to say that my parents are protective, but not overly so. I have an extremely supportive family, and lots of supportive friends and neighbors. From an educational standpoint, I had little if any difficulty. Some of my textbooks didn’t arrive on time and I therefore fell behind a bit, but it wasn’t that hard to catch up with my classroom peers. I never had problems with any of my teachers or anything like that.
3. What are the biggest challenges? Conversely, what are the quirks/perks?
One major challenge I have is independent outdoor travel. I have always been a cane user, and I have gotten very good at the cane from years of practice. My cardinal directions are quite good. For instance, I could tell you which direction north is if somebody were to tell me I was facing east. I had orientation & mobility lessons throughout elementary, junior high and high school. These lessons extended throughout some of my young adult years.
In August of 2004 I moved out of my parents’ house and into the apartment building where I am today. At the time I had a roommate who had been my neighbor back when my family and I first moved to Illinois in 1985. He was legally blind, and started out as a cane user. But then he got a guide dog. Obtaining formal O&M instruction was and still is a real challenge. The local voc/rehab people claim that since I don’t have a full-time paying job, they are unable and unwilling to send anyone out here to work with me.
I sought help from the state Client Assistance Program a few years ago, and finally a formal O&M instructor was sent out to work with me. However, she stopped coming after only a few short lessons. On our first day together though, she asked me to name one thing for us to work on. Now that I’ve had time to think things through a bit, I’m wondering if that should’ve been a clue that she wasn’t going to be working with me for very long.
My response was street crossings. She immediately responded by telling me that, aside from advocating like heck for accessible traffic signals in my area, the only solution to this issue was a single card. I was to just stand at a street corner with one elbow bent, and hold this card out until someone maybe came by and offered assistance. The card contained a message that read something like: “I’m blind; please help me cross the street.” We practiced with this card a few times. At first she acted as the “kind stranger,” and then she had me do it independently and actually wait for another person to approach. I live in a rather congested area with no accessible traffic signals. However, I have a hard time believing that there’s no other alternative solution to this problem.
The reason I say this is simply that there are other people who have been formally trained to cross busy streets with no accessible traffic signals, and even places where these signals do exist. The people who have been trained to do this are also visually impaired, and some have balance issues. They may not have the exact same condition as I do, but it’s the same concept that is being taught.
Some people have even asked me if a guide dog would be of any use, but I’ve always heard and read that one needs top-notch O&M skills in order to qualify for a dog.
On the other hand, safety is very important and everyone with whom I’ve come into contact has emphasized that. This includes my family. So I really don’t know what to think anymore. Perhaps I could just have someone tell me about all the streets here, or perhaps a GPS of some sort would come in handy. I’ve read that GPS devices shouldn’t be considered a replacement for live, one-on-one O&M training by a professional in the field.
The other major challenge for me has been transportation. I first began using the local ADA paratransit service and cabs several years ago to get around, when nobody else was available to take me places. Back then the paratransit service was very unreliable, and I was often late for class or wherever I was going on a particular morning. I also had to cut class early in order to catch my ride home at the end of the day. There was little to no hope of calling for another ride if I missed the original one.
While the paratransit service here has seen many improvements over the years, riders are permitted to phone in our ride reservations only one day in advance. This has in fact worked out in my favor a number of times, but I have since had a difficult time securing trips most likely due to an increasing number of riders. Weekend availability of the service is iffy.
I’ve recently been thinking that it would really be great if somehow riders could double up on one single ticket. So how it might work is that when these ID’s are assigned, they would be assigned to 2 riders who are going to the same destination.
But Illinois is not like that. We are ranked very low in terms of state-run services for people with disabilities, and very little if anything at all has been done about this track record. I’ve often wondered if this might be due at least in part to the extreme amount of hard-core advocacy that has been going on. With regards to taxicabs, they can get expensive and not all drivers are willing for whatever reason to help out.
But along with the negatives must come the positives. I just got my first Mac computer 2 days after Christmas last year, and have spent a lot of time learning it. I highly commend Apple for including VoiceOver in their core operating system. I have found VO to be an excellent addition to the screen reader market. I like Windows too though, and hope to eventually run that on my Mac Book Air. In addition, I really enjoy living here. My neighbors are fantastic, and we do a lot of fun things together.
4. What do you wish people knew about blind?
I wish more people knew that blindness is not just black or white. It is on a spectrum, so people have different degrees of vision. Therefore, one size does not fit all. Some of us are blind from birth, while others lose their vision later in life. This can either be a gradual loss of vision, or somebody can lose all their vision at once. Some of us are fluent Braille readers, while others have never even learned Braille.
Something related to what I just said is that Braille is not the only key to literacy. Braille books can get very big and bulky due to the many volumes. I know this well from having to carry around multiple Braille volumes of a single book throughout school. I of course had these zipped up in my backpack, but still it was a lot. Braille displays cost upwards of $1000, and a lot of times state VR agencies aren’t willing to pay for them. Most if not all screen readers have navigation commands, allowing the user to hear a word character by character, for example. There are also other helpful commands, such as the command to spell out a single word. But Braille does still have its place, such as labeling items around the house or apartment. We certainly have come a long way regarding technology!
5. What are the biggest cliches/stereotypes you’ve seen?
One of the biggest cliches/stereotypes I’ve seen is Braille on drive-thru ATM’s. Perhaps one of these decades we who are visually-impaired will be able to get behind the wheel and drive for real. But until that happens I don’t see why in the world people would purposefully put Braille on a drive-thru ATM. Other ATM’s are a different story though.
BONUS: What is your advice for writers writing diverse characters?
I’m not sure, but I think one bit of advice would be to consult an actual disability group or two.