activism

Staying Sane In A Culture Of Outrage

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Unless you’ve been living off the grid for the past year or so (and if you have, congratulations, you’re not really missing much), you’ve been inundated with rage-fuel from just about every imaginable quarter, at least on the internet. The tumultuous American election, the unrest in Europe, the conflicts in the Middle East—these have all snowballed to create feelings of despair and near-constant outrage. Sustaining these feelings for any length of time is mentally taxing, and I’ve seen this struggle in the disability community and, of course, in myself.
Shouldering my personal mental health issues has spurred me to devise strategies for staying sane in these troubled times. While everyone on and offline will have, I hope, found their own effective coping mechanisms, I thought it might be prudent to share some of my own. My goal is to help others, including those without disabilities, safeguard their sanity while continuing to be present online. It’s all very well to fight on the front lines, but we must remember to look after our well-being, no matter how guilty it makes us feel to do so. We’re no good to anyone or anything unless we care for ourselves, first and foremost.

Learn to Sit Down

If you’ve spoken about any issue on the internet, you’ve probably been told to “sit the f**k down” a time or two. It can be discouraging when people demand your silence, particularly if they claim to speak for and represent you, but they have a point.
One of the first things I had to accept when I worried for my mental health was that sometimes, I had to put down my torch and acknowledge that not every battle is mine to fight. I cannot possibly join every crusade, champion every cause, or address every issue, in the disability community and elsewhere. I’ve found that sticking to the conflicts that affect me most directly is the best way to ensure that my voice is heard and my views are based on accurate information and experience. There is no point getting involved in a dispute I know nothing about, and once I recognized this, my life got a whole lot calmer.
In addition to preserving my sanity, this tactic meant I didn’t inadvertently misrepresent or harm anyone else, whose opinions are much more valid than my own. What right have I to speak on behalf of those with autism? Wheelchair users? Those who are deaf and hard of hearing? None whatsoever, I’d say. I’m free to discuss their general rights as disabled human beings, but my personal experience is totally irrelevant in most cases. I’d be annoyed if someone with little or no experience with visual impairment presumed to override my needs, and I imagine others in the community feel the same way.
So, learn to sit down once in a while. It’s worth it, I promise.

Know your limits

The next thing I learned was that my capacity for absorbing rage-fuel is finite. You may have discovered the same. While some of us grow numb to it all, developing armour and forging ahead, others of us need mental health breaks. Stepping away from social media can be therapeutic in the extreme. More than once over the past year, I’ve had to unplug temporarily, just so I could function normally and live my offline life.
Here are some signs to watch for if you think you might need some time away:
• Your heart races at the very thought of reading yet another inflammatory article or Facebook post, but you can’t seem to stop clicking on them.
• You find yourself jumping into strangers’ conversations at the smallest offence, determined to set them straight.
• You pick fights with friends who disagree with you, despite the fact that it achieves little and only ends in resentment or awkwardness.
• You find yourself under constant stress, especially when surfing the web.
• You’re losing sleep over the opinions of strangers, even when those strangers are ill-informed and unworthy of your time or energy.
• You’re unable to concentrate on your job, your relationships, and other infinitely more important parts of your life.
If you’re encountering any of these issues, back away, at least for a few days. Your energy is precious, and if you’re anything like me, you can’t afford to waste spoons on fruitless anger. I can just about guarantee you’ll return to the fray feeling more tranquil, and the energy you do expend on the things you care about will yield better results. Try it.

Be Open to Changing Your Mind

Personal growth is underrated in this polarized landscape. If you’re on the left, you’re expected to stay there under all circumstances. If you’re on the right, the same is expected of you. No matter where you fall on the spectrum, people demand that you pick a side and remain there. Nuance is so often abandoned in favour of toeing the party line, and this can be enormously stressful.
Remember that your principles, while they’re admirable, are allowed to evolve over time. If you receive new information that proves you’re wrong about something, be at peace with changing your perspective and your position. You may consider some beliefs to be inviolate, I know I do, but flexibility is its own reward. Keeping your mind open—but not too open, you don’t want to be swayed by every breeze—is vital to your growth and development. My own views have shifted over the years, which is reflected in my blog, but I’m not ashamed of it. All it means is that I’m capable of adapting to what life teaches me.
If communities as a whole, and individuals in particular, are totally closed to change, they won’t survive for long.
Don’t let anyone accuse you of betrayal or flip-flopping. Adjusting your beliefs and values according to new information you gather is normal and healthy. Don’t let anyone convince you otherwise.

You Owe Nothing to Anyone

Finally, keep this close to your heart: you do not owe anyone anything. You are not duty-bound to educate. No one should try to force you to act on any given cause. Respecting your limits and beliefs should be your highest priority. It’s worthwhile to advocate, and I prefer that people choose the path to education if they insist that nondisabled people behave properly around them, but you should never feel as though you have to treat every situation as a teachable moment. If you try, you’ll find yourself exhausted and frustrated. You might even snap one day and bite some innocent person’s head off. This has happened to me, and I recognized it as a signal that I could not be a perfect educator at all times. On days when I just don’t have it in me, I need to go about my business and forget about perceived duties to my community.
Furthermore, you don’t owe anyone a debate or an explanation. If someone seeks an argument with you, by all means engage them, but end the conversation once you’ve had enough. There are many resources out there. Point them toward those and withdraw before you become unduly upset. Let no one tell you what you owe them.

I hope these tips will help you. If you can, please pass them along to anyone you know who might be staggering under the weight of all they are reading and sharing. Tempting as it may be to steep ourselves in this culture of outrage, we must learn to practice self-care and cultivate self-awareness. Only then can we find balance.
Good luck in all your noble endeavours. Do me one favour though, and rest now and again.

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Inclusion For All! (Unless You’re Disabled)

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Yesterday, I went through a fascinating but painful experience on Twitter. A very popular activist posted an important piece of information about the women’s march, saying she wanted it to reach as many people as possible and encouraging people to share far and wide. As it turns out, these were pretty words: while she did host a plain-text version of the information on her website, the tweet contained an inaccessible image with the text inside. This makes it impossible for screen readers to interpret the contents of the image, leaving out anyone with too little vision to read the message without sighted help. What is more, this woman placed a URL to the accessible version inside the inaccessible image, completely defeating the purpose of including it at all!
Wanting to make the information easier to access, another disability activist asked that the original poster tweet the URl on its own, and stressed the importance of accommodating screen readers, particularly since the tweet was meant to be available to everyone. If you want something shared widely, then including as many people as possible makes sense.
I joined the conversation (I’m a glutton for punishment), pointing out that Twitter has a handy alt text feature that makes it possible and easy to describe images. This feature would have been perfect for making sure the URL was readable for everyone, including blind screen reader users. I did not expect immediate action; I didn’t even expect a response at all. I just wanted to raise awareness about an option that is often overlooked and that would save people so much time and effort.
What did I get for my trouble? Well, nothing encouraging. Two of this activist’s followers jumped into my Twitter mentions to tell me the following.
• I had no right to “harass” someone who is doing her best.
• I was devaluing the tireless, exhausting work she was doing.
• I should go find something “real” to complain about.
• The only reason I was speaking up was that I was “bored with my life” and had nothing better to do. (Yes, because a full-time job, a social life, a relationship, and a budding freelance career mean I’m ever so bored and useless. I adore being judged based on nothing at all.)
• I should stop attacking people on Twitter.

Let’s break this down. A person (whose followers presumably agree with her) professes commitment to inclusiveness. Intersectionality, a buzzword many on the far left are fond of using, only applies to some groups. Disability is not included in that group, which is typical of a lot of feminist, left-wing activism; we’re often invisible to the loudest, proudest voices. Since I am disabled, I must be a bored, unproductive person. Asking for access is considered harassment by default, even when it’s a fairly polite, solitary tweet devoid of name-calling and anger. My concerns aren’t “real” or meaningful. Inclusion doesn’t include me, or other disabled people, and sharing far and wide means restricting your audience, even after you’re told how to remedy the issue. Finally, harassment doesn’t go both ways: tearing a stranger to pieces and continuing to tweet them after I’ve said I’m done with the conversation is acceptable, but sending one informational tweet is not.
I hate hypocrisy, and it’s inexpressibly devastating to come across it in the very communities that are supposed to support and include minorities. Why is disability so often absent from these people’s minds, and why, when it’s brought to their attention, is it so callously and vehemently dismissed? Why don’t we count?
I try to be patient with people. I try not to live a life of constant rage and victimhood. I realize that baby steps are par for the course and our rights and humanity won’t be fully recognized overnight. Education is vital and not every activist should be expected to have intimate knowledge of what we need right off the bat.
You would think, however, that once they’re enlightened, they’d act on what they have learned. Many of them do; later in the day, another Twitter user I approached apologized and was more than happy to make changes to her inaccessible tweets. Her warmth, sincerity, and complete lack of defensiveness were exactly what I needed after such a disappointing encounter.
I can put this down as one unfortunate incident and move on, and I intend to do just that. Before putting it behind me, though, I feel bound to tell people about my experience, and explain why that never should have been allowed to happen. Even among supposedly inclusive circles, I was treated like an annoyance who should just go away and stop complaining already. These people have “real” work to do. Can’t I leave them to do it?
This is not okay. You cannot and should not be allowed to get away with cherry-picking which minorities to support. You should not get to decide who is worthy and who is not. We’re not perfect, and sometimes we are guilty of cutting people down for honest mistakes. Despite this, I will continue to hold inclusive communities accountable for their refusal to acknowledge and stand with us. (Predictably enough, the activist I tweeted did not back me up or tell her followers to stop.)
In the meantime, I’m going to appreciate and uplift those who are willing to listen and act. The world isn’t all bad, and I can’t let myself drown in a sea of rage-fuel that really isn’t personal. I know I’m not useless. I know that my access requests are legitimate. I know I’m worthy of respect. I’ll just have to wait patiently for everyone to clue in, I suppose.
Now, excuse me while I get back to my productive, useful life.

Selective Discrimination: Why Service Dog handlers Should Denounce Mississippi’s Religious Freedom Bill

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Service dog users get a lot of grief. They are barred from restaurants, ejected from cabs, rejected by ridesharing services like Uber, and kicked out of public businesses. Each time this happens, (assuming the handler goes public with the news), there is as much scorn as support. Other blind people tend to rally around these victims of discrimination. Newspapers get involved. The businesses or individuals in question are reminded of relevant laws requiring them to allow service dogs anywhere their handlers go, and in the best-case scenario compensation, or at least an apology, is provided. The best-case scenario doesn’t always happen, though, and if you were to take a stroll through a few comment sections pertaining to any of these stories, you’d find shocking bigotry, hatred, and ignorance.

It is unreasonable to support discrimination against service dog handlers. Besides, anyone with experience knows that most service dogs are well-trained and astoundingly well-behaved. I know a guide dog so focused that she can keep calm while someone literally screams with hysterical fear as she walks by. She’s so quiet that I often forget she’s there (when she’s in harness that is—the rest of the time she is an energizer bunny). I know full well how absurd service dog discrimination is, whether it’s based on fear of dogs, a belief that dogs are destructive and untrustworthy, or a religious objection. The law is the law, after all.

Christians everywhere are celebrating the brand new bill passed in Mississippi. This bill essentially removes all discrimination protection from the LGBTQ community. Under this new bill, it is legal to refuse service to any member of the LGBTQ community as long as you have “sincerely-held religious beliefs.” So, A Christian who objects to gay or trans people could bar them from restaurants, eject them from cabs, reject them while working for a ridesharing service, and kick them out of public businesses. Sound familiar?

So, I ask every service dog handler this: why is it reprehensible for a Muslim, whose religious beliefs are probably sincerely-held, to kick you out of their car or refuse entry to their restaurant, but perfectly reasonable for a Christian to do the same to a gay or trans person? What makes a service dog handler worthy of discrimination protection above a gay or trans person? Why are a Muslim’s sincere religious beliefs met with scorn and censure while a Christian’s are met with support? Why is it acceptable for someone to object to the “choice” to be gay (assuming you still follow that line of reasoning) but unacceptable to disapprove of the choice to own a service dog? Except in a very few and very special cases, having a service dog is a choice, not a necessity. And why, oh why, aren’t you speaking out against this bill?

You face a huge volume of scrutiny and criticism just for wanting your dog to accompany you wherever you go. There are projects in the works to secure identification for all dogs, so that you could be badgered for an ID card at every turn. The vitriolic comments on social media should tell you just how precarious your position is.

A bill like this is so easily passed…and next time, it could be targeting you.

#AbleistScript: Pointless Venting, Or A Sign Of Hope?

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For the uninitiated…

If you’ve been hanging out on Twitter lately, you’re likely to come across the #AbelistScript hashtag. The hashtag is meant to gather tweets from all kinds of people, detailing all the ways the able-bodied have said hurtful, offensive, and discriminatory things. It sounds sort of pointless and bitter, doesn’t it? It’s a bit of an outrage fest, no? Well…

The tweets are incredibly disturbing

This hashtag has revealed far more than the typical “Hey, Helen Keller, where’s your dog?” nonsense. It has revealed deeply unsettling stories—stories most of us would rather ignore. Some “ableist” people are innocent, but misguided.

Some people are shockingly presumptuous and uninformed.

Some lack tact and respect, even when dealing with loved ones.

Some, of course, are downright offensive.

Scary, isn’t it?

It’s more than mere outrage fuel

It’s viral, and for good reason: it is a medium through which we can come together and express the things that make our blood boil. It’s an opportunity for us to release some of the tension, helplessness, and frustration many of us have been bottling. Some of us have kept quiet out of courtesy, or the fear of burdening people. Others are afraid to be perceived as whiny or high-maintenance. Still others feel ashamed of their anger. Do they have any right to be upset? Are they being unjust? Is their suffering legitimate? Are they just “easily offended,” “thin-skinned,” or “obsessed with political correctness?” I’ve no doubt that some people are, but there are too many of us to dismiss our feelings entirely.

I’d like to think our suffering really is legitimate. Life can be very lonely, especially if your disability is particularly rare. That feeling of isolated desolation is emotionally crippling.

We are bombarded by unwanted opinions. Stop taking those medications and deal with your problems. Use the power of positive thinking. The only disability is a bad attitude. Suck it up, buttercup; it can always be worse. Be grateful that you have as much as you do. What you have is more than many can enjoy, so keep your chin up.

This is so much more than a hashtag

You may well ask what we could accomplish with all this public, viral venting. Besides the undeniably cathartic benefits, there are more concrete, long-term goals we can achieve if we reach enough able-bodied people. Much of the “ableist script” can be altered or eliminated. We can clear up misconceptions and debunk myths. We can explain why certain ideas are genuinely harmful. We can foster empathy. We can educate. The internet does a lot of harm, but in this case, it’s a remarkably useful tool. Viral attention can be an asset, and I think we need to pounce on this opportunity.

Some are already feeling hopeful, which is a very welcome sign.

We need more than an echo chamber. We must do more than blow off steam. We should strive to advocate for ourselves, but we should not do so at the expense of clarity. We can’t allow our anger to distort our messages or alienate the very people we are trying to persuade. We are capable of intersectional solidarity, and we can put it to good use. Don’t dismiss this purely because it’s a hashtag. In this case at least, it has enormous potential. We mustn’t waste it.

Don’t Be Fooled: Love Hasn’t Won…Yet

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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.