VisionAware

Editor’s note: This post was written by Alan Lovell, Information and Referral Coordinator for the APH ConnectCenter. Alan often receives calls that are especially good examples of what we strive to do in the ConnectCenter and from time to time he is sharing them here on the blog. Be sure to read his first post in this series.

A Tale of Two Calls

Our December “call” is actually based on two calls I received on the APH ConnectCenter Information and Referral (I&R) line this past Friday. The title of this blog was inspired by two conversations that day that both ended with my referring to the Marvel Comic character, Daredevil. For those of you needing a little background on this comic book, Daredevil is the secret identity of a character named Matthew Murdock. Murdock is a New York City Attorney by day and a blind superhero by night. He has many enhanced sensory skills and martial arts training that make it so he can do superhero things in a way that most folks, blind or fully-sighted, can only dream of. For this call of the week you need to know that he spends a lot of time getting knocked down, not dying, and then bouncing right back to take care of business.   

Daredevil Number One

The first caller shared that he had suffered a traumatic brain injury resulting in vision loss after an incident involving him falling off of his Harley Davidson and then have his head run over by a utility truck. If your reaction to the tale is anything like mine, you’re correct:  He is extremely lucky to be alive today. He said he wasn’t expected to make it through the night after the accident. Without going into all of the scary details as he explained them to me, you can imagine that an event like his accident yielded some pretty profound and lasting comorbidities. His brain injury is also the primary reason for the vision loss. He is totally blind in one eye, with low, yet stable, vision in the other. At some point in his journey he also suffered a stroke which left him paralyzed on one side. He spent two years recovering in a rehabilitation nursing home after being discharged from the hospital where he worked to restore as much movement in his body as possible.  All this while adjusting to life without sight for the first time.  

As an I&R Line Coordinator who specializes in blindness, of course I immediately launched into telling him about all of the services we usually recommend for someone dealing with blindness for the first time: vision rehabilitation services, independent living skills training, assistive technology, etc. In my job, sometimes it’s an automatic response to hear a little bit of a person’s story and predict what the next question is going to be even before they get to that point of the story. To me, it seemed obvious what he needed, what he was going to ask for. I mean, what else would he want to know?  

He stopped me. “No, no,” he said, I’ve got all that. I’ve got cooking and cleaning down, sometimes can’t see if the floor is dirty or not; but my philosophy is, even if it looks clean to me, clean it anyway.” He said “I’ve figured some of these things out on my own. Like how to double the use of my support cane as a way-finding one too. Living in a canyon in Southern California, I’ve got lots of rocky and hilly terrain to practice on.” He went on to tell me about teaching himself woodworking skills because “why not during COVID; and being unemployed and all…”  (Note VisionAware has a detailed section on woodworking for people who are blind or visually impaired)

“Do you have a woodshop at home?” I asked. He does. In fact, he’s amassed a rather impressive collection of tools and machines like a band saw, lathe, hammer drill, belt sander, table saw, and on and on it went. Jokingly I said “Listen man, don’t cut off a finger, okay?” He laughed and agreed. Said that he had already come close at a point or two. His plan is to hone his skills to make products to sell on the open market such as furniture, hand carved wooden boxes, and so on. He says although he has only been out of the rehabilitation center for a couple of months and is currently receiving some disability and SSI, he doesn’t plan on receiving assistance for long. In spite all that has happened to him, all the rehab, everything that was taken from him in terms of independence, physical prowess, etc., he plans to push himself by using his mind and senses to overcome his challenges. “I won’t be down for long,” he tells me. And then I had to ask, “So how may I help you?” 

“Oh yeah”, he said, “I’m looking for a dentist who can fix my teeth. They got pretty busted up during all this.” Hence, the inspiration for the title of this month’s post. Because this is what I envision a Daredevil would do: Get knocked down, get his teeth fixed, and get on with life. 

Daredevil Number Two

My second “daredevil” was the last call of my day. He is a 40-year-old guy in search of a guide dog. Unfamiliar with the process, he phoned me and explained that he recently lost his longtime companion pet of 12 years, and was clearly still grieving the loss of his best friend. He described her as a Great Dane named Luna who went with him everywhere. In fact, he said that since losing her he rarely leaves his house. He talked about how his family lives two miles away, and about how he would regularly walk there to visit.  With Luna he would walk there independently. With his dog he would also walk to the store do his shopping. He really relied on his dog. He said it was as if she knew where he wanted to go, even what stuff he needed at the store. “She was awesome,” he said. 

I mentioned that I had never heard of any guide dog schools using Great Danes as service animals. “They’re so big” I said.

“Oh, she wasn’t a guide dog,” he laughed, “she was just so smart and seemed to know that I am blind and that I needed her help.” He said that his family didn’t want him making the walk to their house on his own due to their misplaced concern that since he can’t see the cars on the road, that he is unsafe traveling without his companion. “I’ve memorized the way” he explained, “I can hear the traffic patterns and I know when it’s safe to cross an intersection.” 

I agreed with him. “Yes,” I said, “with proper orientation and mobility skills, we blind folks are free to travel wherever we feel is safe. Although we understand that the concern of loved ones may be born from perceived dangers, perhaps they simply don’t realize that we are capable of more than they think.” 

 “How are your cane travel skills?” I asked.  

He thought for a moment. “Well,” he said, “I carry one with me, but I really don’t like, to use it. I can hear things. It’s like echolocation: I hear obstacles, like trees and walls and such. He went on, “I mean, I do OK. I’ve only run into a few things.” 

I said, “But what about drop offs and steps? Echolocation doesn’t help much with that. Don’t you think using your cane could help? Perhaps your state blind services agency could help you hone your skills a bit. At least it may satisfy the concerns of your family.”  

The mention of drop-offs and steps must have jogged something in his memory. Before I knew it, he was laughing and telling me about a slew of run-ins and near misses he had experienced over the course of his life. “I’ve been hit by nine cars” he blurted out. 

I lost my composure. “Wait!  What?” I said, “nine cars?” I mean, I had no reason to think that what he was telling me might not be true; but seriously, nine cars?  

“Okay,” I said. “Now that you’re telling me more of the story, I’m starting to think that your family’s misplaced concern for you may not be so misplaced: Ya Daredevil!” 

I then explained the process of qualifying for a dog guide. How a potential recipient of dog guide training must first demonstrate orientation and mobility (O&M) skills. I shared how state agencies for the blind could teach him these skills, and also provide him a letter of recommendation that he could use as proof of his O&M training. “You may know where you’re going,” I said, “but a properly trained guide dog could also keep you out of the path of everyone else. Cane skills will not only let others know of your visual impairment, but coupled with proper intersection crossing skills, using a cane will do wonders for your safety” I explained. “You may think you are invincible like Daredevil, but clearly we know now that is simply not the case.”  

My mind was still reeling: did he really say nine cars? “Nine cars?” I asked again 

He laughed again and said “Yes, nine cars. Even though each car had some damage, I was never hurt”. 

“Wow” I said shaking my head. “I’m putting you in touch with your state’s services for the blind first. Then on Monday I’ll compile a list of the guide dog schools around the country and send them to you in an email” 

So, how did I come by the title of Daredevil for this week’s blog?  I guess Daredevil came to mind in each of these conversations because of each caller’s innate ability to keep from dying after what would seemingly kill a mere mortal. Like the Marvel superhero, each caller had a wicked-strong drive to bounce back from, and rise above, the challenges that have been thrown at them. Their “nothing’s going to keep me down” attitude is something I admire and draw strength from.  While up to the point of calling the APH ConnectCenter’s I&R Line, each man had made choices that aren’t necessarily what I would recommend for someone learning to thrive with blindness; each caller’s resiliency in the face of adversity, and pursuit of better solutions, shows a mindset that empowers them on a path to thrive in the face of adversity.