Very recently, someone told me in a roundabout way that I have a chip on my shoulder regarding requiring assistance from others. After being shocked and slightly mortified by this thought, I started to think this might in fact be true. What I decide to do about that chip, whether to ditch it all together or only use it as a fashion accessory when strictly necessary, will only come with time.
Everyone needs help with some things sometimes, but as it comes to needing something specifically because of my blindness, I hate being at the mercy of someone else. Whether it’s reading a restaurant menu, filling out a medical form, using the convenience of a car rather than a long complicated bus route, or voting (hopefully next week’s blog post). Requesting assistance with this feels so much like I am less complete, less whole of a person, that I find myself instantly on the defensive when I am required to ask for help for things like a computer not working properly, for directions to the bank, or other things that everyone needs help with sometimes. My default mode has been “FIGHT!” for so long – fighting for education, employment, and (thankfully rarely) access challenges with my guide dog, that perhaps I don’t know how to simply just… well, to just be. But I don’t want to go so far the other way, to expect people to do things for me that I am more than capable of doing for myself. I fight that stereotype all the time, too, that I am not capable because I cannot see.
Some of these fights are external and necessary; they make us stronger, and (hopefully) educate a public who doesn’t know what to do with us, and help pave the way for those who come behind us. Some of these fights are internal and necessary; am I, as a woman, doing all I can to be happy, healthy, productive, learning new skills and enjoying my life? But a constant defensiveness doesn’t help anyone either; in fact, it alienates the very people we are trying to reach. Asking for help is not, in and of itself, a sign of weakness… And yet… I still feel this way, and probably a little piece of me always will. But my sword is being shelved for a while, because fighting myself under the guise of fighting against others is probably more exhausting than just being me. To those I have hurt in this way, please let me know; we may not agree, and that’s OK, but I want to be viewed as a woman (not a blind woman); I crave acceptance alongside my autonomy, and may need your help to get there. Perhaps I should take my own advice in a previous post: be quick to listen, slow to speak harshly, and keep an open mind.
Several years ago, I decided to donate blood. A friend had done this several times, and had said she would go with me and donate blood at the same time I did. At the best of times, I’ll acknowledge that I’m not comfortable with needles (even a flu shot creeps me out), but I thought that donating blood was such a worthy cause, and my friend would be with me… so we filled out the paperwork, and got prepared for the donation. I distinctly remember sitting in the chair and the needle going in to the crook of my arm… and a boiling hot sensation traveling the whole length of my arm from elbow to wrist. I yelled for them to remove the needle – I think the words were “Get it out!” – and several workers told me that it was OK, it would only hurt for a second. Some of the longest five seconds of my life passed before me, arm still feeling like someone had scalded the inside with hot water, still screaming for the needle to be removed, before my wish was granted. I was shaking and crying, and the next ten minutes, over the post-donation juice and cookies, several well-meaning workers came by and told me that it was OK, that lots of people couldn’t handle needles. Humiliated, my friend and I left the blood donation clinic, and I’ve never been able to muster the courage to try again – not because of fear, but because my cries of pain were treated as a simple discomfort with the needle.
Would this perception have been the same had I been sighted? I can’t say for sure. But over the years I have found myself in situations where medical professionals either “get it” and treat me like an adult… or they don’t. Many people I know have more experience than I in this regard, and I am more than willing to be called out as a medical-professional novice. Thankfully, the majority of my experiences with the medical profession have been positive. The one glaring exception was an orthodontist I saw when I was in my mid-teens, who constantly spoke to my mother and not to me during the entire 1.5 hour preliminary consultation. Even though my teeth were the ones to be worked on, and I was the one answering questions, in his eyes I was a child – a blind child at that – and thus not worthy of the courtesy of being addressed directly. The whole experience soured me on orthodontists for several years, until I knew I could not wait much longer. Fortunately, my dentist referred me to a terrific orthodontist who allowed 22-year-old me to be responsible for the care I received. He offered his opinions, I accepted some, chose alternatives for others, but I had the facts in hand and made informed choices about my own dental care. Maybe it’s because I came to my appointments alone for the first few months, but I was viewed as an autonomous adult, with preferences as to how I wanted my orthodontic treatment to go. It didn’t all go as planned, but I felt like I was a member of my own orthodontic team.
Over the years, I have accompanied friends, family, or my husband to medical appointments or emergency rooms, and have witnessed first-hand how the blind can be treated differently from the sighted. It can sometimes be demoralizing and frustrating – having doctors or nurses speak to one’s spouse/friend/parent and not to the one person whose body is being examined – and any time I need to go to a new medical professional, a little piece of me worries in the back of my mind about whether I will be spoken to, about, or over by front-line staff or – worse – by the doctor/dentist/physiotherapist themselves. So this afternoon, when I sliced my finger while cutting a green pepper, not only did I worry about the possibility of stitches (FYI, I get the creeps just writing this) but whether at the hospital I would be treated like a child or the adult that I am.
I was cooking chicken alfredo. The pasta was cooking, I’d sliced broccoli and mushrooms, and was about halfway through slicing the green pepper when the knife slipped and cut my left index finger. It started bleeding like crazy, but didn’t hurt much yet. I ran it under cold water and waited to feel… something. My husband grabbed Jenny’s emergency kit, used half a roll of gauze, wrapped my finger and bandaged it. We were out the door so fast that we left Jenny at home alone without dinner.
At the hospital, we were directed to the triage area. The greeter at the front door directed most of her comments over the next little while to my husband, and I had a little bit of a sinking feeling in my stomach, like I was invisible, even though I was the one who was injured. Thankfully, from the nurse who took my blood pressure and temperature (and removed Ben’s bandage masterpiece), to the one who took my personal information, to the doctor who gave me a band-aid and sent me home, I was addressed directly for all medical and personal information. Sadly, this is not always the case. Sometimes the person who accompanies a blind person to an appointment for moral support is addressed as though they are our carers; sometimes our choices or preferences regarding our own health care are swept under the rug because we are simply not medical professionals. And sometimes, like today, a blind woman with a bandaged finger is treated like a woman with a bandaged finger; it’s sad to say that such treatment tends to be so rare that I have a new spring in my step this evening.
And just in case anyone was wondering, Jenny did get her supper… and green peppers are evil!
“Hi! My name’s John.”
“Hi, John.”
“I couldn’t help noticing that you’re blind.”
“Yes, that’s true.”
“I read this awesome article in a scientific magazine about the research they are conducting on curing blindness.”
“Wow! That’s interesting.”
“Wouldn’t it be awesome? You could see everything around you! It would make your life SO much easier!”
Every single blind person I know has had this conversation – or some variant – at some point in their lives. The idea is that blindness is this horrid place of darkness, and a cure would fix all of our problems. But when someone such as myself has the nerve to say “A cure would be awesome for some people, but I don’t think I’d want it,” you’d think we’d just slaughtered a kitten on a downtown sidewalk – the flabbergasted reaction is so intense. But why WOULDN’t we want to see? Wouldn’t it be so amazing? My friend Meagan has eloquently written about her own reasons why a cure for blindness might not be for her; it’s an opinion that I share, so I won’t belabor the point. But I have recently come across a couple of articles that have piqued my interest, not so much based on their content, but the public’s reaction to them.
Jewel Shuping. Her name has become quite well-known in the blindness community over the past few weeks, as she alleges that she suffers from a rare condition called Body Integrity Identity Disorder (BIID), in which someone whose body is perfectly healthy has an uncontrollable need to become disabled. Jewel claims that, with the aid of a psychologist, she blinded herself with drain cleaner, and, prior to that, she “blind-simmed” (acted like she was blind), using a white cane and becoming proficient in braille. Though Snopes finds her story hard to swallow, it does present an interesting case study, both of Jewel herself and of a general public who thinks the reverse – a cure for blindness – would be the greatest thing on earth.
You don’t have to dig too far into comment sections (that vast, murky landscape of anonymous internet users everywhere) to know that support for Jewel Schuping and the psychologist who assisted her is very rare indeed, from both sighted and blind alike. Sighted people can’t imagine anyone who would willingly take such a risk (though Jewel Shuping is not the first or only blindsimmer out there); many in the blind community resent her for knowingly blinding herself and potentially using resources that are required by those who are blind due to genetics, illness or accident. Leaving aside the method of drain cleaner to blind herself – as voluntarily removing eyes probably doesn’t fall under the purview of any medical facility in the world – the reaction to Jewel’s voluntary blindness can be described as perplexed at best and vitriolic at worst.
On the other hand, Mike May chose to undergo a surgery that would restore some of his vision after becoming blind as a three-year-old. This article pops the fantasy bubble that receiving sight is simple and will make everything better; Robert Kurson’s book, “Crashing Through,” appears to further address May’s physical and mental transformation after receiving some of his sight. While I have yet to read this book myself, and while May’s experience preceded the explosion of social media, judging by the number of blindness-related organizations who share his story, May has maintained a wide acceptance from the blind community at large.
I dare not compare Jewel Shuping’s methodology with Mike May’s (one has the acceptance of the medical profession while the other clearly does not), but the idea that one purposeful life-changing act can be so derided while another can be so accepted baffles my mind. Conversely, what about the individuals who are struggling to come to terms with their own blindness? At some point, everyone has to face denial, anger, and hopefully will reach a healthy place of acceptance. But I know people who have denied their vision impairment for so long, until they came to a place where they felt safe to acknowledge it openly. Conversely, I have known people who have admitted to me that they have feigned less vision than they actually had. Some blind people – particularly those who have had vision – dream of a cure one day; others wouldn’t know what to do with it if they had it. To muddy the waters even further, if a true cure for all forms of blindness were found, what happens if one chooses not to undergo what would likely be a complex surgery and a lengthy rehabilitation process? Would we be denied housing, education, employment because of choosing not to undergo risky and complex medical procedures?
Leaving aside any hypotheticals, doesn’t living life well all come down to being secure in who we are? For some, like Mike May, it might mean taking chances and undergoing a revolutionary medical procedure; for others it might mean embracing life without sight because it’s all we’ve got. I don’t know where The Jewel Shupings of the world fit in; while a cure for blindness seems a long way off due to its complexity, willingly blinding yourself seems short-sighted (no pun intended) and complex as well.
So perhaps the next time “John” approaches me and tells me that a cure for my blindness (which, by the way, is more than one eye condition) will solve all my problems, I’ll ask him how he would feel if I told him that blinding himself would fix all of his insecurities, frustrations or grievances of life. After all, he’s telling me the reverse is true.
Every now and again, life throws you some introspection, some minor way of making you look at your childhood and thank God, your parents, teachers, the neighbor down the street, or plain dumb luck that you were shown or taught something at an early age that made your adult life so much easier. As a very young child, you remember thinking – as all children think – that everyone’s parents taught them how to cook four-course dinners, name all the birds in the sky, or (in my case) use hand tools and identify the size of drill bits by touch.
Last night, Ben and I put together a bookshelf. Leaving aside the really annoying fact that the delivery company left an 8-foot tall box leaning up against our house, making it impossible to move it inside single-handedly from my 6-foot-wide porch, I was thrilled that our music room would soon have an additional book case. As everyone knows, braille books take up an insane amount of room, and Ben’s huge collection of paperbacks are relatively scattered, with no set place to go. So last night, we were putting our new shelf together with screws and nails, and (obviously) a screwdriver and hammer. I had been struggling tightening a screw, so I opened the top of the screwdriver and grabbed the #3 Robertson bit… it worked like a charm! Ben asked me how I know what we needed, and how I could tell the #2 from the #4, or a Robertson from a Phillips by touch. I told him that my father taught me the basics as a child, and other friends along the way have had me set up stage sets and other things, and when I first moved out on my own I did most of my minor home repairs myself.
As a child, I thought it was perfectly normal to go down into my father’s workshop in the basement (and later the garage) and hand him tools while he was working. But it was a rude awakening when I was about seven or eight, and I told someone to hand me the hammer so I could fix something or other. The reaction was just priceless: “Um… no! You can get hurt!” No amount of begging, pleading, telling them I’d fixed things before would make them relent. I can’t remember the general outcome, or even what I wanted the hammer for in the first place, but I remember feeling so dejected; my father believed in my abilities, but no matter what, to this neighbour, I was still viewed as the blind kid who dared to want to wield a hammer.
Fast forward several years, and I had moved in to my own apartment in Edmonton. My kitchen cabinets were loose, and I just grabbed a screwdriver and within five minutes they were good as new. The empowering feeling is almost indescribable even now, more than ten years later. When Ben and I bought this house, I took delivery of a new bedroom set, and put it all together, with the exception of the bed. Little things come apart, and I can put them together again… and there are few better feelings of accomplishment in the world than simply being able to get them done. This was all made possible because I was the daughter of someone who not only believed that I could learn about tools and perform these tasks, but that I should, whether or not I could see what I was doing.
I know that this blog has blind subscribers, and I know there are parents of blind children who read this blog; I may be preaching to the choir here. Those who are blind, don’t let anyone clip your wings. If your family does not believe in your abilities, I am so sorry… but don’t give anyone the power to tell you that you cannot do something before you try and succeed, fall on your face, or somewhere in the middle. For parents, relatives, or friends of blind children (or even adults), please resist the temptation to jump in and do for them something that they may really want to do for themselves. Would you deny a sighted family member an opportunity to make mistakes? For most, the answer is no. So if you have the skills, show them. Give them the opportunity to fly. I may never use a table saw, and that’s OK… but pass me that screwdriver… this table leg is wobbly.
Life Unscripted 