Goodbye, Colourful World

I usually identify as blind because it is easier than trying to explain what I can and can’t see, but the label isn’t entirely accurate. Technically, I do have a little vision, though not enough to recognize faces or read print of any size. LCA is slowly depleting the tiny amount of vision I was blessed with at birth, and I’m finally beginning to care.

As a child, one of my favourite activities was visiting the greenhouse on a warm June day, basking in the profusion of mellow blues, insistent reds and cheery yellows all around me. Many colours were beyond my visual scope even then, but as a child the brightest colours were still easy to see, and I relished them. I appreciated them most where I found them in nature: I discovered them in flowers, in crushed autumn leaves, and even in fruit bowls. I became confused when trying to see the soft green of an apple, but had no difficulty appreciating garish carrots and sunny lemons. While I didn’t exactly understand beauty, I did understand the vibrancy and immediacy of colour, and I remained fascinated for many years.

As my vision is slowly eaten away, however, my cones (colour-sensitive cells of the eye) are deteriorating. My peripheral vision is all I ever really had to begin with, and as that disappears, my ability to distinguish colours is fading with it. Where once I could easily separate bright yellow tank tops from pale pink ones from white ones, I now struggle. If I tilt my head just so, and squint my eyes just so, and say the magic incantation just so, I can sometimes tell. Other times, however, no amount of adjustments of lighting or head position will quite do the trick, and I’m left just a little unsure. My world is turning, ever so gradually, into one of shades. I no longer notice bright colours unless they’re called to my attention. I could be gazing straight at a bright red apple, but it looks black until I concentrate. Only then does the red hue show itself. Mostly, I’m okay with that. … Mostly.

Occasionally, I allow a little sadness to steal over me. It’s not just colour I’m losing, either. Just this evening, I was looking down at my parents’ black dog. He was sprawled on the carpet, enjoying a luxurious nap, and I realized I could no longer see the entire length of his body without moving my head. My field of vision is now so narrow that I cannot even see an entire hand’s breadth without difficulty. It’s a small thing really—being able to see the length of a dog’s body is not exactly a life-saving perk. Even so, after so many years of knowing things would change but not really dealing with that knowledge, I’m suddenly forced to face it head on.

On the bright side, the loss is proceeding at a snail’s pace. It takes several years for me to detect a significant decline, so I feel quite peaceful about the whole process. My brain is learning to accept the loss little by little, and I’m learning right along with it. Since my vision was never of much practical use anyway, I’m not nearly as distressed as one might expect me to be. Certainly I’m not fantasizing about a cure or composing laments every other day.

But sometimes…I miss the flowers. I miss the ability to sort laundry without any effort at all. I miss the gentle gold of the sunrise and the fiery orange of the sunset over the trees. I don’t know if I’d call these things beautiful, exactly—it’s not beauty I was seeing—but I would call them, well, intriguing. Bit by bit, my world is becoming less vibrant.

Sure, I still have sound, and scent, and touch, and taste, and all the rest of it. No, I’m not awash in grief over the whole thing. I’ve always known it would turn out this way, and I’m thankful that I was ever able to see those flowers and those apples and those sunsets—or my version of “seeing” them, I suppose. It’s important to remember that I really had very little beyond colour to appreciate visually. Even at birth, I had but a tiny fraction of what sighted people have. But, yes, I will miss the colours.

It’s lonely, sometimes. I have a lot of totally blind friends, and they simply can’t empathize. Paradoxically, my sighted friends are even less able to do so, because they find the idea so horrifying. How could I possibly feel mild nostalgia rather than all-consuming heartbreak? I feel as though I’m not quite a real member of the blind-person club, all because I know what red looks like. I do belong, functionally speaking: I can’t read street signs or take photographs or even recognize my mother’s face. Despite the fact that my life ticks most of the “blind” boxes, I feel just a little isolated, as I sit on my living room couch and look down sadly at that dog.

It will be all right, of course. In general, I shall carry on as cheerfully as always. In general, I will not feel the need for sight or the longing for a cure. In general, I’ll continue to be a typical blind person. Every now and again, though, I’ll take a moment to bid a quick farewell to the colourful world.

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The Woman Who Chose To Go Blind (And Why We Shouldn’t Hate Her)

Jewel Shuping’s story went viral when it was revealed that she convinced a psychologist to pour drain cleaner in her eyes and blind her. Naturally, people freaked out.

Wow. Jewel Shupingis a idiot

— #FlyEaglesFly(@One_Liner_Tyler) October 2, 2015

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Quite understandably, many people thought it was a hoax, but Jewel herself told her story, in an attempt to help others with what is called Body Identity Integrity Disorder. The disorder is similar to gender dysphoria in that the patient feels his/her body is not as it should be. In this case, Jewel, and others like her, genuinely feel that a part of their bodies—often a limb but in this case an organ—does not belong and they will feel incomplete until they get rid of it. For many, this results in amputations, but in Jewel’s case, she just needed to damage her eyes enough to feel blind. Jewel has never been happier.

This is unthinkable to just about everyone—indeed, the disorder is very rare—and this story has inspired shock and outrage from sighted and blind alike. Sighted people cannot imagine going blind anyway (as I’ve previously discussed, it is one of their worst fears) and even blind people think she’s a bit nuts. After all, most of us would not necessarily choose this life, even though we may not welcome a cure. Entertaining the idea of deliberately disabling myself makes me shudder, and my first reaction to this story was anger. Being blind is hard enough without sighted people actively choosing the “lifestyle”. Further, what will sighted people think of us? The blind community suffers from ambassadorship syndrome, even if we try to combat that instinct, and I wondered what implications Jewel’s actions might mean for the rest of us? It’s very difficult to give people the right idea about what blindness is like, and viral anomalies like this one further distort the picture.

Of course, sensational news can lead one down many paths, some of them a bit ridiculous. I began imagining what would happen if more and more people did this sort of thing. Would people lose respect and compassion for disabled people in general? Would everyone I meet become suspicious, wondering whether I was a “real” blind person or just someone who poured drain cleaner in her eyes on purpose? Would we need to undergo rigorous testing to make sure we’re not voluntarily disabled during screening for benefits, accommodations, and other special services? I eventually managed to derail the hysteria in my head, which left me with the hefty question: how should I feel about Jewel?

Unsurprisingly, Jewel and her actions have sparked much controversy for two reasons. One is that she claims to suffer from Body Identity Integrity Disorder—as mentioned above—so the question is whether or not she is mentally ill or simply different. Disorders are not generally viewed positively, but trans people are steadily gaining social acceptance around the world. They can be said to have a disorder as well, yet most forward-thinking liberals would not tolerate bigotry directed at them, nor would they support the dismissal of the disorder as “mental illness” that needs to be “cured”. So, does Jewel need “treatment”? Is she “ill”? Or, like trans individuals, is she merely feeling an all-consuming desire to modify her body in a way that has felt right for her since she was a child? One might argue (and indeed I have) that trans people are different because they do not seek to disable themselves. Changing your gender, while involving much mutilation and modification of body parts that are in perfect working order, does not have the same result as someone wishing to invite disability. Disability makes life much, much harder. It’s harder to get a job. It’s harder to gain social acceptance. It’s harder to support yourself and others, particularly if disability accommodations require costly technology and services. Being a trans man or woman is difficult whether they transition successfully or not, so they may as well go ahead and transition, hoping that they will one day “pass”. Blinding yourself, however, is a whole other matter. Still, the temptation to make the comparison is strong. Jewel even decompressed in the same ways trans people do. Using a cane and reading braille were ways of decompressing so that she could feel “normal”, at least some of the time. So, is BIID similar enough to Gender Dysphoria that we should treat the two equally? Is Jewel no crazier than Caitlyn Jenner?

The other bit of controversy deals with objections and fears from the blind community itself. While some of Jewel’s blind friends have been incredibly supportive—one even calling her “brave”—there has been a lot of hatred directed toward her as well. What if she makes the rest of us struggle more than we already do? We don’t exactly need more negativity associated with us, right? Then there is the very thorny (and legitimate) issue of accommodation: should someone who has deliberately disabled themselves be entitled to benefits, workplace accommodations, assistive technology grants and so on? Should someone who has purposefully blinded herself receive help for a disability she actually chose and embraced? Certainly, Jewel has access to at least some of this at the moment, and despite her contentment with her new lot, she still occasionally complains about some of the things blind people have been grumbling about for decades. Thanks to the paratransit, I will miss my first class. They are going to arrive until 1030. My first class is at 10. I am very angry.z

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Does she have any right to complain about Paratransit when she chose a life that would force her to rely on it? Does she have any right to seek help that the rest of us need whether we want to or not? While I may not feel as angry as I did, I can certainly see why this angle, in particular, infuriates other blind people. We work so hard to be on a level with everyone else, even when we are perfectly content with ourselves, and it seems almost insulting to think that someone would handicap themselves and then have the gall to complain about it. It’s easy to get good and mad about that. But …

Is there any point in being angry? Is there any reason to hate her? Is there any good that can come from dismissing her as crazy? She doesn’t feel crazy. She feels very happy, and psychologists and neurologists have acknowledged that what she is feeling is also felt by others. Even if we choose to frame her condition as mental illness, we still have to respect the fact that she has cautioned others with BIID, asking them to seek treatment before resorting to drastic measures as she did. She went so far as to admit that it really is a disorder, and that while she is happy with her choice, it is worth seeking alternative treatment and, if people still decide to go through with it, they should do so using much safer channels. Wanting to modify your body in drastic ways may not be objectively crazy, but getting a psychologist to put drops of drain cleaner in your eyes might be a little crazy.

My post raises far more questions than answers, I know. I worry: I worry that Jewel will continue to be the target of intense bigotry, hate, and derision. I worry that other people suffering from BIID will be dismissed, or shunned, or silenced. I worry that people will begin to see Gender Dysphoria as crazy again, and direct even more bigotry, ignorance, and hatred towards trans people. In short, I worry about more hate, more anger, and more myopia. Will people want to view this issue from multiple angles, or will they simply refuse to think about the matter long enough to see a grey area? I can just imagine all the sighted people taking one look at this headline and picturing men in white coats hauling Jewel away. I can also see blind people taking one look at this and feeling powerful anger and contempt.

I hope good can come of this. Jewel is happy, and other people with BIID have the potential to be happy—or at least happier. Jewel’s message of caution and alternative treatment is just as important as her own choice. She’s not trying to lead a movement here. We’re not likely to see a huge wave of BIID sufferers coming out of the woodwork, dismantling the whole disability accommodations system as we know it. However, it is very dangerous to treat this like a happily-ever-after scenario. This has so many complicated facets, and I know there will be a huge outcry from the trans community if they feel delegitimized by BIID. We need clear heads, and open minds, and rigorous research. We need objectivity. This is not a good time for black-and-white thinking. Do me a favour, and spend five minutes looking at this from every angle. Then, tell me what you see.