Patrick Davis: Hello everyone. I have been given an amazing opportunity by the wonderfully funny and intelligent host of the page which brings so much awesomeness into our lives. (The Malleable Mom: blush!) We were talking to each other about physical disabilities, and she asked me to write about my experience in dealing with blindness. Owing to my perpetually lazy brain and lack of direction in general, I asked her to provide me with a list of questions, because otherwise this was gonna get weird – I mean really weird, the kind of weirdness that would be outlawed if any sane person could put a handle on it. So Ashley Fuchs (I keep mixing her up with Jackie Fuchs, the Runaways bass player) sent me a few which I will now attempt to answer to the best of my ability. Well, here goes.
The Malleable Mom: Thank you so much for doing this for us! I have about a million questions, but I tried to limit them to the hundreds…OK here we go…Woah, you’re blind! Were you born blind? Am I person #36,784 to ask that? (Is it annoying?)
As a kid who was just trying to be normal, I ended up getting very aggravated about blindness-related questions, some more educated than others. Today I love questions about it, because I have this thing about barriers where I want to destroy them with great fanfare, and when someone asks me about it, I know I am with a kindred, if less belligerent spirit.
I have LCA, which is a rare gene mutation that affects the rods, (or is it the cones? I forget), in the retina. A doctor described it to my flustered parents as ”Like bad film in a camera.” My dad was in the Air Force when I was born and he had to undergo a psych eval because his kid was blind. I was furious when I heard this as a teenager because it’s just blindness for Christ’s sake, but I now understand how this can be kinda jarring. This was also during the Cold War and he was on nuclear alert and would, if ordered, fly somewhere and drop radioactivity. So yeah, it’s probably good to check and make sure someone with that kind of responsibility has his sh*t together.
Long story short, I love questions and, if my laziness dissipates and I actually go out and learn about my situation, I am happy to answer them.
The MM: Can you tell everyone a little bit about yourself?
Patrick: About myself, hmmm. I am 32 years old and have been blind for all of them. I am lucky – I say that because I didn’t have eyesight to depend on and then lose like many who are blind. I play the saxophone, drums, some okay keyboard. Blind musicians are such a rarity…not! I’m a cliché but I’m cool with it. I’ve been lucky enough to have performed with Jeff Hamilton, John Clayton, and Claudio Roditi and many other great jazz musicians at the Lionel Hampton Jazz Festival, one of the best times in my life.
I currently live in Austin because I got lured in by the “Number 1 live music capital of the world” line that the city likes to throw around. Seriously? The number 1 capital, ‘cause places often have two or three capitals? Like the Lone Ranger(S) from the movie Airheads. But I digress. (The MM: Hahahahaha!)
My girlfriend and I moved here, we found jobs, and just when we were getting financially stable, bam! pregnancy. So, we are focusing on raising our now five-year-old daughter who is amazingly tall for her age and makes us think outside the box almost every second of the day. The music had to go on the back burner for awhile but I am making plans to get back out there. I have a stable job at a packing and distribution center throwing around 70-80 pound boxes, and I recently was asked to lend my talents to assist the creators of a well-respected weight training program to help them make it more accessible to blind and visually-impaired customers.
The MM: What are some of the things you use to accommodate you day to day? For example, I assume you have voice technology that speaks my Facebook page to you, right? But some of my humor is visual: how do you deal with images, memes, and photos?
Patrick: So, technology, how do I use it? A program called a screenreader scans text off the screen and puts it into a computer-y Stephen Hawking voice and I write this answer, go on the net, do most of what everybody else does. I get sucked into Facebook just like one of them “normal” people. Also, I use the iPhone and here’s why: Built into the iPhone’s software is a screen-reading program called VoiceOver which does the same thing. I don’t have to specially order it, I don’t have to figure out how to integrate it with the software of the operating system – it’s just right there! I got a phone, turned it on, and just started texting, something people around me were able to do for years before VoiceOver became a thing. So yeah, [I’m a] big Apple supporter, and I will support anything that works and is accessible.
Visuals on the other hand can get a bit tricky. Facebook now has an alternative text feature where it tries to recognize elements in a picture. So if someone posts that says, “Dammit!!!!” and Facebook tells me “Photo may contain cat,” I get the gist of it – somebody’s cat was being an a**hole, a totally cat thing to do. What the cat did I don’t know, though, and visual humor and memes kinda go out the window.
Actually, I’ve gotten a few of my FB friends to describe what they post which is really awesome of them. I once tried to start a meme accessibility project to convince meme creators to put a short description of the visual elements on something they themselves create, as when it’s shared the description goes with it. I was going to run this idea like bloggers such as yourself and then life got ahead of me etc, but since it’s out there, do you think this would be a headache for meme artists?
The MM: Truth? It shouldn’t be, but people will probably not think to do it. However, now that I know this is what you need, I am going to try do it! Ask and ye shall receive, dude! (pssst! I may need reminders from time to time…) OK, moving on – any funny stories? Any sad ones?
Patrick: So for the funny story I decided to relate the tale of my high school graduation. I grew up in Anchorage, Alaska and this was the last thing I had to do before I moved away to college. High school sucked. I think that is a universal experience, and I like many others was ready to get the righteous hell out of there. All that stood between me and freedom was the walk across the stage. I would walk up a ramp, do the handshakey thing, grab my diploma and continue straight ahead and down another ramp. I had practiced the walkthrough, so I could do this whole thing unassisted. I went through four years of high school bullsh*t, and I would walk this thing like the adult I was, dammit! (Hahahahaha so hard to write that with a straight face.)
Well, I also had another thing in mind. The ramp and the stage had no railing – not that it was a far drop but still. My name blared from the speaker and I headed up. At the top I pretended to trip. I pushed my cane out and over the edge of the ramp and make like I would take a header into the floor. Four years of teenage angst and frustration all made up for by making an arena full of people collectively go, “Oh!”
I recovered and continue on, shaking the hands of some thoroughly rattled administrators and that was that. I would be informed later that there is now a railing along the ramp and the stage to prevent the thing that did not take place that day. (The MM: Bwahahahaha!)
Well, this next bit is about a friend of mine who I will call J. As far as I can tell, the only thing wrong with him is that he is blind, yet he was raised much differently from me. There is a man by the name of Bill Gothard who preaches some amazingly fanatical religious guidance – no pop or rock music as it is Satanic, no exposure to pop culture as it is the same, men rule the world and women, well, spectacularly do not, etc. J’s parents followed him to the detriment of all of their children.
When you’re blind you fight a constant struggle to obtain information about your surroundings, about the world, because you are missing out on twenty percent of the average sensory input. To have a repressed upbringing, damaging to anyone in its own rate, is quite the double whammy.
During my childhood I could not count the many times he would get psyched about something, an event, an opportunity, just to be shot down. He was great with musical instruments but he wasn’t allowed one because satan would jump out at him and turn him into one of those evil rock stars or something. And taking care of himself? Forget it. “He’s blind, he’s supposed to have trouble with (fill in the blank) so we’ll just do it for him.”
He is a year older than me and essentially still lives with his parents in a very rural part of the midwest, micromanaged and in a place where public transportation equals zero. It is very hard to talk to him. I encourage, I help how I can, but there is absolutely nothing I can do about the situation. For years I’ve witnessed his psychological abandonment and social and emotional stunting, and it is extremely hard to pick up the phone and call him.
The MM: Ugh. That is heartbreaking. I really struggle with watching people who are either in denial of their problems, or incapacitated by them. I’m sure you all know by now, that I am not one to let things hold me back, and I want that for everyone else so badly. I, too, have had to distance myself from certain people, so that I don’t put my frustration on them. That leads me to my next question: you told me that you felt frustrated that you couldn’t “answer the call” like some of your peers when 9/11 happened. I have two children who would be 4F by military standards. I think that many disabled people can identify with the resentment of having their physical body limit their choices. How do you deal with that?
Patrick: I usually don’t bitch and moan too much about being blind. Compared to a lot of people I’ve met, being only blind is a rarity. Blindness more often than not seems to be a symptom of so many other things: diabetes, stroke, heart surgery, and of course gunshot trauma. It’s the south, I’ve met a lot of that. And when you factor into account a story from my home town of Dan Bigley who went blind from having his head munched into by a grizzly bear?…yep, I’m done complaining.
I mean, except for this part I guess. My dad was in the Air Force, my brother was in the Coastguard, and when I was graduating high school there were a vast number of people my age who were putting on a uniform and going to Afghanistan to fight against those who believe it’s okay to fly planes into buildings and kill three-thousand people. I wanted to fight that as well. From what I am told, the enemy does not Polo your Marco, so this was clearly not an option. Nobody said or did anything to make me feel like I was letting people down, but I nonetheless felt that way.
I also have a hard time with the fact that I can’t pick up and go for a run or bike ride, alone with my thoughts. Sure I can get a partner or hit the ole hamster wheel at the gym but sometimes it’s just good to be antisocial and head out to nowhere and fix myself. I was also kinda broken up about not being able to drive, especially when my friends turned sixteen and got licenses. Now I live in a very large parking lot called Austin and I’m okay with it.
But seriously, Beyond the Bear by Dan Bigley, you can’t go wrong there.
The MM: Can you teach us seeing people something we may not know about what is rude, or how to be polite to the visually impaired?
Last but not least. Well, it might be the least since I don’t have too much to say on the subject. The things that offend me are the things done on purpose by smart people who should know better, things which limit my employment opportunities, and keep me from doing better for my family. But this is about the accidental offense.
As a kid I was very easily offended by people who interrupted me to ask how I did this or that without seeing. To me it felt like a statement that I was not normal, but I was also twelve and full of my own sh*t, kinda like I am now.
The big thing is, just remember to ask first if a person needs help. I’ve had people come up and grab my arm and have no idea what I’m trying to do in the first place. But they mean well…I think. Also, don’t be afraid of asking a blind person if they saw a movie, Facebook post etc. You guys see a movie and hear it at the same time, but that would get a bit too word-intensive for everyday conversation, and aside from an occasional joke or two, I don’t hear blind people making a big thing out of it. Just ask and listen and it’ll all work out.
The end. Finally, right? I’ve got two ears and one mouth but it’s a big mouth. I hope this has been enlightening or at least entertaining.
I am still blown away by the generosity of Ashley to offer me her blog for my ramblings and I hope I have done it justice. She is definitely the most amazing of the two of us and I have learned so much from her, so I am honored that she has asked me of all people to write something. So thanks again, and thank you all for reading. Stay strong.
The MM: Stop it! No, go on. I love it. I cannot thank you enough for not only being willing to have me interrogate you, but also for brightening up my day when you jump on The Malleable Mom and share life with me. I am proud to call you my friend…and I promise to always tell you when your profile picture sucks. (Note: Patrick’s previous profile picture made him look like a “creepy 70s cop,” and in his words, I’m “one of those disabled people who has the balls to say so.” He is one of the reasons I show up every day.
And so are you. Thanks for reading!