Don’t Be Fooled: Love Hasn’t Won…Yet

On June 26, 2015, the US Supreme Court ruled that same-sex couples now have the right to marry in all US states. Many took to Facebook, Twitter, and other social networks to celebrate that the US had finally achieved marriage equality. Not everyone was ready to celebrate just yet, though. Alicia, who is blind, is intimately acquainted with the marriage inequality plaguing less visible minorities in the United States. While everyone is rejoicing that love has won, Alicia finds herself unable to keep quiet. While she and her fiancé (also blind) do not receive the hatred and scorn that same-sex couples do, they still suffer discrimination which, while much quieter, is just as meaningful. According to Alicia, we have a long way to go before #LoveWins. This is her story, so I’ll let her tell it.

When Meagan asked me to guest-post on her blog, I was honored. This issue is near and dear to my heart, but I hope to write out my thoughts without turning this post into a rant.
While my friends on social media were celebrating, I found myself furious. Marriage equality is not yet a reality. I know this because I cannot marry the man I love … and I don’t foresee a day when that will change.
The United States has marriage penalty laws that will affect anyone who is receiving government benefits. These include SSI (Supplemental Security Income), SSDAC (Social Security Disabled Adult Child), and, perhaps most importantly, Medicaid. These programs are income-based and, once a couple marries, that income is considered “joint”. Therefore, if you and/or your partner are receiving any of these benefits, marriage may put you over the ridiculously low income limit. This assumes that married couples have a higher joint income than they would if they were single but, as is the case with many disabled couples, this is far from guaranteed. Even with joint income, most of these couples are still unable to cover needs such as shelter, food, and medical care (especially the latter) without assistance. Given that a very high percentage of people living with disabilities is unable to work, these penalty laws prevent many disabled couples from getting married, despite their commitment to and desire for marriage. Social Security is sneaky about this. Program criteria states that if a couple is “holding out to the community as married”, that couple can be considered married for Social Security purposes, and lose their benefits. Unsuspecting couples–who accidentally find themselves within Social Security’s criteria for “holding out”—could lose their benefits, leaving them with very little recourse, if any.
My fiancé (Mark) and I both receive Social Security benefits and health coverage through Medicaid. If we were legally married, our cash benefits would be cut dramatically if not entirely, and we would both certainly lose our medical coverage. I have several physical health issues that would make my situation precarious. Even worse, my partner has cancer requiring aggressive expensive treatment. There is no way we could afford this if he lost his medical coverage, which forces us to choose between marriage and his cancer treatments.
I hasten to point out that these laws do not only affect people with disabilities. They unfairly penalize the elderly (often low-income) who are only able to cover their increasing health needs with programs like Medicaid. A friend told me a story about her Grandmother, who had lost her first husband. A year later, this elderly woman met a man she wished to marry. Marriage wasn’t an option, however, because they would both have lost their medical and Social Security Benefits. The choice: stay unmarried, or forfeit the funds that would cover essential medical and living expenses. The solution, whether for a young disabled couple, or an elderly couple with no disability at all, is to cohabitate, and make it abundantly clear to everyone that they are either roommates living together for economic reasons, or nothing more than boyfriend and girlfriend. I, like many others, cringe at having to refer to someone I love more than my own life with the same term a high school couple dating for a week would use for one another, but it is what we must do to secure our living and medical expenses.
When I first started discussing this issue on social media several months ago, I was surprised by the reactions I got, particularly from those within the disabled community. Many asked me why I was so upset: after all, Mark and I were married in our own hearts. Why did we need a silly little piece of paper? Weren’t our own feelings toward each other good enough? The answer is no. The even more infuriating thing is that many of the people giving us these platitudes were the same ones that were telling LGBT couples to keep fighting the good fight, and not give up until they were granted equal rights. No one told these couples that “it’s just a piece of paper.” So, why does this attitude change for couples like Mark and Me?
In the early days of the fight for gay marriage, the concept of Civil Unions was created, which gave same-sex couples the right to be at a partner’s bedside, privy to their medical information, and other rights of marriage without making it legal. For the most part, the LGBT community refused to accept this. For many that I talked with about this issue, it was the system’s attempt to placate them: “we’ll give you half of what you want, but not your heart’s deep desire.” Given that, even when civil unions were offered, same-sex couples continued fighting for the fundamental right that is legal marriage, and were encouraged to do so. Yet there is not even an option for civil unions for those receiving benefits like SSI, sSDAC, and Medicaid. In fact, we can lose these benefits by simply appearing to be married—no piece of paper necessary. Not only do we not get our heart’s desire, but we must go to the other extreme and make sure we don’t join our lives in any way beyond that of roommates.
People (some of them disabled), have come up with another argument concerning why they think I am wrong about this country still not having marriage equality for all. Their take is that prior to the Supreme Court ruling, a same sex couple simply could not get married, no matter how much they wanted to. It was just not an option. They argue that couples such as Mark and I could go down to the courthouse today, apply for a marriage license, and get married by a Justice of the Peace in record time. These people claim I have no argument, because Mark and I are simply choosing not to marry, rather than being unable to. on the surface that logic would make sense. But what happens to us after that marriage ceremony in the courthouse? Do we go off on a honeymoon and begin our lives as happily married people? No. Letters would begin arriving in the mail, announcing that the Social Security benefits which provide for our basic necessities for daily living have been reduced or cut off altogether. Next we get letters that announce that coverage for Mark’s life-saving cancer treatment has been taken away. What do we do then? We are not the only ones in this situation, and many people who wish to marry face disabilities and health difficulties even more severe than ours. Marriage or cancer treatments…not a real choice. For Couples where one or both partners is even more seriously disabled, this is not a choice, either. Marriage, or life-sustaining medical equipment, skilled in-home care, medical procedures….not a real choice. Marriage or food on your table, shelter over your head…this does not sound like a real choice to me.
My friend Amy likened this issue to the poll tax laws that many states had from the late 1800’s all the way up to 1966. Strictly speaking, blacks, whites, women, and Native Americans all had the right to vote….so long as they paid the required poll tax, and (in some states), passed a required literacy exam that showed they were educated. The makers of these laws knew full well that on the surface they would look like progress. Proponents of the poll taxes and literacy tests claimed the laws were perfectly equitable: after all, everyone did have the right to vote, and everyone wishing to exercise their right was required to pay these taxes, regardless of race or gender. What the lawmakers would not publicly admit was that there were groups who would be disproportionately unable to pay, such as African-Americans, Native Americans, women, and even impoverished white people. The sums of money those states required are literally pocket change to us in 2015, but they were exorbitant amounts of money at that time.
The reality was that the poll taxes and literacy tests were quiet ways to ensure that only select groups would be unable to vote. It could have been said to anyone at that time, “Oh you could go vote, you’re just choosing not to.” Technically, this would have been correct. Yes, a person in a minority group could have gone to their local courthouse and cast their ballot, but were faced with a choice that was not really a choice: use the money they often earned with back-breaking labor to exercise their right to vote, or feed and shelter themselves and their families.
Fast forward to modern day and the Federal marriage penalty laws. There are no laws on the books that explicitly state that people with disabilities or those who are elderly cannot marry. There are no rules that explicitly state that those receiving Social Security and/or Medicaid benefits are not allowed to get married. There would probably be a public backlash if the laws were this blatant. Like the historical poll tax, it is a very insidious form of discrimination that most people are unaware of. Many advocates who are aware view it as a quiet form of ableism and ageism.
They theorize that lawmakers are aware that people receiving benefits from these programs largely fall into the disabled or elderly categories. In the minds of many young and/or able-bodied people, these groups should not be allowed to marry anyway. The theory is that Federal laws penalizing recipients of these programs for marrying are just an easy way to ensure that this does not happen, while not being outwardly discriminatory. While I have yet to make up my mind whether I entirely agree with this, it would not surprise me to find it was the case. Therefore, it baffles and angers me that people continue to claim the US has achieved marriage equality for all, just as it would baffle and anger me if someone claimed the poll tax set-up was voting equality for all.
When Mark and I mention our plight to friends, family, medical professionals, etc. Our pain is minimized, more often than not. We get statements like, “Oh, you don’t really need marriage, you know how you feel about each other.” “It’s a silly paper that doesn’t mean much.” Really? I beg to differ. The gay rights movement didn’t see it this way, and though their fight was long, drawn-out, and in many cases painful, they eventually achieved enough lobbying power to get the laws changed. I can’t help but wonder: where is our lobbying power? Where are the groups that will rise up, go to our Congress people, and try to create awareness and change for the millions of couples who are disabled or elderly? Where are the Hollywood celebrities? The musicians with world-wide fame? The high-profile athletes? Where are all the people who helped fight for same-sex marriage? What no one has appeared to consider is that the Supreme Court decision now bring same-sex couples who receive these benefits under the same discriminatory rules. While awareness of this issue is growing, I’m not sure that the disabled and the elderly communities have enough numbers to push such change forward. Collective action is often most effective, but groups/organizations who recognize this problem and its seriousness are few and far between. Those that do exist are often very small groups without the ability to attract the high-profile audience that is needed to get the attention of those in power.
I’ve known of these laws for years, and they have always disgusted me. Unfortunately I never thought to help advocate for change, because I never envisioned meeting anyone I would want to marry. Now I have, so these laws have become very personal. I wish now that I had fought to advocate for change before this issue became so personal to me, but like so many of us, I failed to act until an issue touched my life directly. However, now that it has, I will continue to work to create an awareness of this discrimination, and do whatever is in my power to see the laws changed. I hope this post will be a step in that direction.

If a Picture’s Worth More Than a Thousand Words…You’re Using the Wrong Words

“Eye contact is way more intimate than words will ever be.” – Faraaz Kazi

Eye contact carries staggering weight with just about everyone. You can say “I love you,” “I hate you,” and “I’m so bored—let’s get out of here!” with a simple look. Indeed, if you don’t make eye contact with the person you’re talking to, it’s not only abnormal—it’s rude, in some cultures anyway.

Upon meeting a good friend for the first time, I was, of course, unable to make eye contact with her. The best I could do was turn my face toward her, and look as alert and interested as I could without using my eyes. I don’t have any control whatsoever over my eye movements; my eyes are always looking everywhere and nowhere all at once. During this particular meeting, I was seated with my folded cane beside me. It wasn’t in full view, so my friend had no idea I was blind. She later confided that she had thought I must have been very shy. “I was so frustrated,” she said, “because you wouldn’t look at me. I was like, ‘Hey, look over here, damn it!’ and wondering what you were thinking. It was really bugging me.”

I’d always known that eye contact was important, but I’d never had it put to me quite that way. It was vaguely disconcerting, as though I’d committed some grievous social faux pas without knowing it. I started to wonder how many others had assumed I was shy, evasive, or impolite. How many times would my meaning have been better conveyed through a simple look? How often were my words, even when carefully chosen, insufficient?

I’ve learned to live with the fact that I’ll never achieve eye contact, but it still irks me, especially since I’m so cognizant of how it could improve my communication skills. I am a professional communicator, after all. And, as always, it’s the little things that get to me. Let’s say a stranger comes into the elevator with me, and I’m too shy to make small talk. It would be nice to simply make eye contact and smile. I use the same facial expressions as everyone else, of course, but I don’t have as much control over them as I’d like. To this day, I’ve never really mastered the fake smile; I just end up looking as though I’m about to commit unspeakable evil. That, or I look painfully awkward. I’ve even been told I suffer from resting bitch face, even though I’m a relatively cheerful person. How nice it would be to show friendliness without having to chatter pointlessly about the weather! (Then again, weather in Alberta is often a legitimate conversation piece.)

I won’t pretend the big things don’t matter, though, even if they don’t nag at me quite as often. I have been judged harshly in numerous musical competitions because I didn’t make eye contact with the audience. Apparently, this is the only meaningful way to connect emotionally with the crowd. The jury’s out on that one. I even had one judge approach me after I’d won second place, saying, “If you’d just looked at us or something, you’d have won.” Gee, thanks. Even when adjudicators are fully aware of my eye condition, they’ll still mark me down, partly because they aren’t conscious of how biased they are in favour of people who can make eye contact when necessary. This would happen even during classical competitions, where visual expressiveness should be less significant than in, say, musical theatre. Oddly enough, I’m far better at theatre than I ever was at classical performance, but I digress.

There’s more to it, of course. My loved ones all know how I feel about them, and I know how they feel about me, too. Nevertheless, I’ve always felt a twinge when someone says “You should see how he was looking at you!” or “I don’t think she appreciated what you were saying to her. She was giving you ‘the look’.” I am told that I have very expressive eyes, so I’m sure I give myself away a lot. But, more than control over my own eyes, I want knowledge of what others are saying with theirs. People don’t always bother to verbalize how they’re feeling. There have been times when someone was giving me a furious glare, an encouraging smile, or a warning glance…and of course it all went whooshing over my head. It’s true that people should probably remember to tell me what they’re thinking rather than staring at me, but it’s so engrained that most people forget.

I take issue with the idea that a look is far, far more expressive than a word, though. I have heard exceptional tenderness and pure venom in words, and I can hardly imagine something more intimate and expressive than that. I recognize that I don’t know what I’m missing, to some extent, so my understanding is very limited. However, people frequently underestimate the power of words and auditory cues because they simply don’t value them as highly. It’s much easier to look at someone than it is to search for the words that will express the same feeling. So, people naturally opt for the easier, quicker route. I would like to think that the words I say matter at least as much as the look you’re giving me. I don’t think I could tolerate a reality where my words don’t matter because I can’t look at you while I’m saying them.
Is it possible that looks are only more effective than words because they are convenient? A look, after all, is free of language barriers. It means the same to most anyone in the world. (Of course, there are exceptions: direct eye contact in Japan means something different than direct eye contact in America.) It is also much harder to mess up a look than a word. It’s easier to say the wrong thing than smile in the wrong way.

Perhaps it is not the fault of the words at all. Perhaps words are inadequate for the simple reason that the average person isn’t used to using them. Perhaps—dare I say it—people have chosen to value looks over words. If I’m right, and it is a choice, then maybe it would be possible to turn things around? Would it be possible to convince people that words are powerful tools—at least as powerful as eye contact? Maybe, maybe not. At this point, I just don’t know. But it’s an intriguing thought, isn’t it?

Maybe a picture is worth more than a thousand words … because you’re using the wrong words.

Please Watch Where You’re Going…Because I Can’t

One of my favourite places to navigate is my university campus. People are reasonably polite. The place has a distinct community college atmosphere, which means there are few large crowds. Generally, fellow students respect the “stick to the right side” rule, so even heavy foot traffic flows quite smoothly.

Every now and then, though, someone will surprise me. I was climbing a near-deserted staircase, staying as far right as possible so I could follow the railing (I love railings, they make me feel safe and loved and whatnot). As I climbed, I heard someone approaching from above, though I found it odd that they were climbing down the left side rather than the right. Thinking that they were probably taking advantage of how empty the stairs were, I continued on my merry way (it would seem I’m always merry—who knew?). As she drew closer, though, I realized she wasn’t going to move. Rather than shift left a little—she was on the wrong side, after all—she chose to let us collide. Only as we did so did I notice a familiar clicking sound—she was texting. As I swayed, clutching the railing for dear life, I began an apology. Talking right over it, she said, “Watch where you’re going!” and stormed off. Well, darling, I would, but…

In an age when distracted driving is an epidemic and texting lanes are a thing, it’s becoming harder to trust that people will respect basic rules of foot traffic. I’ve always been used to bumping into people who refuse to move. That’s not going away. There will always be oblivious people who are too wrapped up in their conversations, or their phones, to notice what’s happening around them. Almost everyone I know has done this a time or two (I’m not blameless myself) but there are some who take it to extremes. Take a stroll through West Edmonton Mall sometime; you’ll see what I mean. Things are getting more dangerous, and I blame two things: mobile phones, and general apathy. People are so ready to assume that, if they’re not watching where they’re going, everyone else will compensate. As my city squabbles over bike lanes, I fling myself to one side as soon as I hear a cyclist approaching on the sidewalk. More than once, one of these cyclists has nearly knocked me over. No one is in such a tearing hurry that they can’t slow down for five seconds while they pass a pedestrian who can’t even see them.

“But Meagan,” you say, “people don’t always know that your blind! Most people can watch where they’re going, so how can you blame them?” I can blame them because of a little thing called visibility. If I’m standing around, sans mobility aid, then yes, I can understand people’s inability to recognize that I can’t see them. My eyes are relatively normal-looking, so it’s hard to tell that anything is wrong with them. They dart about in a frantic manner, but some people mistake this for extreme shyness. But if we are standing with canes out or dogs at our sides, there is very little excuse not to notice us. If people are paying attention to what is directly in front of them, they will definitely spot us. The girl who collided with me on the staircase was breaking an unwritten rule, and wasn’t aware of her own surroundings. This is a toxic combination. I do my best not to get into people’s way, and I apologize at least half a dozen times a day. It’s all the rage in Canada, don’t you know.

I have no problem with people bumping into me because it’s crowded, or because I accidentally cut them off. People bump each other all the time. It is not necessarily wrong or rude to do so. I’m not saying that people should throw themselves out of my path in case they brush my elbow. I am, however, saying that people could stand to pay more attention. If you know that you’re a bit distractible while texting, then move to one side, finish your text, and go your way. Don’t expect everyone—people who can’t see you, especially—to flow around you like an accommodating current.

Please, put your phone away and watch where you’re going…because I can’t.