Tag Archives: opinion

Why I Stopped Referring to Disabilities as “Gifts”

This is something I have wanted to write about for a long time.  I avoided doing so because I know that there will be backlash, but I’m at the point where that’s a risk I’m willing to take.  Besides, I’m the gold standard for what is and is not an appropriate comment, so anyone who wants to spew BS has to get past me first.

Here goes: I am done referring to disabilities as gifts.  I am done pretending to agree with people who refer to disabilities as gifts.

As someone who lives with multiple disabilities and has had exposure to many others, I firmly believe that calling disabilities “gifts” is dishonest.  I read this great article about the disservice that autism whitewashing does to all involved.  That doesn’t just apply to autism.  If you had to live with any of my conditions and you called them gifts, I would ask what you’ve been smoking.  Please don’t misunderstand me.  I’ve learned the hard way that the victim mentality gets us nowhere.  But neither does faking positivity.

During the past couple months, I’ve had several experiences that show just how anti-gift my conditions really are.  Being down to one working hearing aid and struggling to understand what’s being said is not a gift.  Losing compassionate, knowledgeable providers to insurance changes and knowing more than your new doctors is not a gift.  Incompetent pharmacies that botch your refills are not a gift.  Being shamed because essential oils, while wonderful, did not miraculously cure you is not a gift.  Being told that G-d is mad at you for being sick is absolutely NOT a gift.

There have been many gifts in the midst of these recent crapshoots.  Friends who have seen me at my worst and love me anyway.  Kitty snuggles that lower my heart rate and pain level, even if only by half a point on the pain scale.  A husband who throws on his “caregiver” hat when I need him to.  I am so grateful for those gifts and I don’t take any of them for granted.  But it’s life itself that brings gifts.  Disabling conditions just plain suck

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Why We Need to Scrap the Word “Millenial”

I am getting pretty sick and tired of everyone using the word “millenial”, as if people in their 20’s and 30’s are different from people who were that age 20 or 30 years ago. I am getting really sick of people telling me that being a millenial means I have certain needs that people who were my age 30 years ago did not have. That is complete and utter BS. How would my needs be any different if I was a 27-year-old living in 1985? I would still need healthy relationships and a sense of purpose. If by “different needs” you mean that social media culture makes it a lot more difficult to meet our innate relational needs, then say that. It’s the sociological climate that’s different, not our needs. I would argue that this “millenial culture” phenomenon is what perpetuates all the selfishness and entitlement in my age bracket that makes the older generations look on all of us with disdain.

Referring to people as “millenials” encourages prejudice. Any time you lump a group of people together, it’s bad news. Prejudice as letting fear or ignorance dictate our responses to things we don’t understand. By using one word to describe an entire sect of the American population, we are doing just that.

The Stigma Against Physical Illness and Traditional Medicine

As I’ve mentioned before, health and I have been having a bumpy ride the past several months. My endometriosis came out of remission last year. Along with that came free gifts of fibromyalgia, irritable bowel syndrome, and asthma.

Last fall, I made the difficult decision to do a 6-month stint of Lupron injections, and then I saw firsthand just how stigmatized physical illness and traditional medicine have become. In the age of natural remedies and anti-doctor sentiment, people who choose traditional treatments are harshly judged and verbally attacked. The rheumatologist who diagnosed my fibro gave me an earful about how I never should have finished the Lupron course, and why did I even left them inject me in the first place? (Dr. F, if you’re reading this and wonder why you’re not my doc anymore, your lovely attitude may have something to do with it! Just saying!)

It’s one thing to have legitimate concern about side effects. Lupron came with plenty of them, and that was part of the reason I put off going on the shots as long as I did. But berating people for making informed decisions about a condition you don’t know crap about is WRONG. If you haven’t felt like you’ve been socked in the stomach or like you’ve been impaled with shards of broken glass, then you have no business telling someone they shouldn’t see a specialist or use narcotic painkillers as needed. (Yes, there are appropriate ways to use narcotic painkillers, and most people don’t lose the judgy pants long enough to find that out either.) If you haven’t been dependent on inhalers to jumpstart your lungs when they’re threatening to take a vacation, you have no business telling someone they shouldn’t put steroids in their body. Yes, that comes with a certain degree of risk, but letting asthma go untreated is much riskier. People don’t understand that choosing health treatments, whether traditional or alternative, is taking a calculated risk. You take a calculated risk every time you get in your car and drive somewhere. You could die in a car crash. That doesn’t erase the benefit to be gained from driving to work or to a social event or wherever.

It isn’t just traditional medicine that’s stigmatized. Illness itself is stigmatized as well. People often say that mental illness is no more shameful than physical illness, but honestly, I get more flak about my physical health issues than my mental health issues. Statements like, “You’re too young to be that sick” or “You must have done something stupid” or “G-d hates you” are signs that our society is not as understanding about physical illness as we’d like to think. The natural remedy fad is partly to blame for this problem, in my humble opinion.

I’m all for natural remedies that are safe and effective. I have a handful of natural remedies that can sometimes reduce or eliminate my need for heavier pain medication. But sometimes the natural stuff just doesn’t cut it, and it’s not always safe. Carbon monoxide is natural. It’s also deadly. It’s also possible to be severely allergic to natural ingredients. For instance, California Baby is a popular organic lotion brand. I have nothing against them, but I can’t use their stuff because it contains a plant called calendula, which is an effective eczema remedy for some people. Well, it turns out I am highly allergic to calendula, which I learned the hard way. So that natural remedy is out of the question for me, and people have had the gall to tell me I’m just being stubborn and I should try the calendula again. (I’m as stubborn as all get-out, no point in denying it, but I most certainly should not try the calendula again. I’m a fan of breathing and not breaking out in hives, thank you very much.)

So what do I want people to take away from all this? I guess I want people to listen more and talk less when it comes to other people’s health issues. (That’s the nice way of saying you all need to shut the frack up.)

The Problem With “Special”

For most of my life, I was branded as “special.” That’s what happens when you have any kind of disability. (I’ve held off on writing about my learning disability on my blog for a number of reasons. The main reason is the issue of labeling and diagnosis. As an adult who has done a lot of research, I firmly believe I was misdiagnosed. I don’t deny that I’m wired differently and have places in my brain that just don’t click. But during my adult life, a few different psychologists verified that I was probably misdiagnosed. I may write more about that in another post. I haven’t decided yet.)

When you have any kind of disability, you typically get the label of “special needs” and people focus more on what you can’t do than what you can do, which, not surprisingly, can make you focus more on what you can’t do than what you can as you grow up. It’s like there’s this unspoken rule that you’re supposed to wear the “special needs” label proudly and aspire to become a motivational speaker.

I bought into it until I was well into my teens. I got it into my head that I was going to be a motivational speaker. What I couldn’t vocalize was that I ran with this idea because I didn’t think I was capable of anything else. I can’t blame one single person for this mindset. Parents, teachers, and society in general were all equally responsible. It’s what we’ve all been taught. It’s both nobody’s fault and everybody’s fault.

Then I watched this amazing TED talk by Stella Young, and she took all the words right out of my mouth. I want to share with you some specific ways in which the label of “special” has been damaging to me.

1.) It was dehumanizing. It’s not empowering to tell someone they can be a motivational speaker if you imply that they have to settle for that because they will never be a productive member of society otherwise.

2.) It gave me a completely inaccurate picture of my own abilities. It amazed my loved ones when I got my driver’s license, had several positive work experiences, and got married. Because it amazed them, it amazed me. Again, this is what we’ve all been taught is normal. Maybe it’s normal, but normal and healthy are not interchangeable.

3.) Even though I was labeled as “special”, I was not valued. People with disabilities often lose their true identity to the “special needs” label. As someone who’s gone through the school system with a learning disability, I will tell you that teachers and case managers seldom see us as individuals. (The issue of misdiagnosis and inaccurately diagnosing various learning disabilities is a huge contributor to this problem, but that really deserves its own post.) We live in a world where people think reading a paragraph on a disability or condition is a substitute for getting to know someone. Yes, I’ve struggled royally in math and science. (I’m convinced the left portion of my brain is just not in there, to be honest!) Yes, bright light sometimes hurts my eyes. Yes, I get a bit agitated (ok, sometimes very agitated!) when my to-do list gets too long. You can read all those facts in any article or medical journal. But those sources will not tell you who I am. Those sources do not tell you that Kati is smart, funny, adores her husband, has way too many books, and knits way too much. Those are the things that make me who I am, and those are the things that were seriously under-valued when I was in school.

I’m referring to my learning disability in this post, but the “special needs” dilemma is not unique to learning disabilities. This was not an easy post to write and I’m sure people will have strong opinions about it, but that doesn’t make it any less important to share.

Redefining Social Justice

I’ve undergone a lot of personal and spiritual changes over the past few years. One thing that is changing drastically is the way I look at social justice.

While I’ve never been on the front lines of the social justice movement, it’s always been important to me. And now I’m realizing that maybe it’s been a little too important. When my anorexia was in full swing, I actually used social justice as an excuse to not eat as much as my body was telling me to, because there are starving children in Africa of course. (It didn’t help that several of my high school friends reminded me of this fact constantly and sometimes even berated me for eating.) Before and after my battle with anorexia, I often neglected to take care of my mental health. Music and TV can really help me relax, but I thought it was selfish to enjoy those things when so many people don’t have them. I didn’t know how I could have any place in the area of social justice if I had my own ongoing issues that need seeing to.

From what I can tell, I’m not alone on that one. Many well-intentioned social justice advocates are great at taking care of other people and lousy at taking care of themselves. (What Do You Mean This Reminds You Of Someone? 0:-) ) William Wilberforce worked so hard at abolishing slavery that he suffered from ulcerative colitis, a digestive condition usually triggered by massive amounts of stress. Erin Gruwell (portrayed by Hilary Swank in “Freedom Writers”) was so invested in her students that she threw personal boundaries down the toilet and her marriage fell apart.

Why do the Americanized church and society in general approach social justice in such a linear, all-or-nothing way? I have a few theories.

1.) We have a white savior complex. We want to present ourselves as having it all together and not having any problems. Focusing on mental health awareness and prison reform would require admitting that (shocker!) our country has its own social issues. Why would we want to admit that when we can pretend we’ve got it all together and go overseas kicking down brothel doors? After all, that’s where the real problems are. We’re white Americans. No problems here!

2.) We want to look good. Want to make a real difference in the social justice arena? Sign petitions online. I’m completely serious. You would be amazed at the things that have been accomplished through this venue. But since people don’t always know when people do this, one can’t expect to be sainted for it, so no one wants to do it. The same goes for buying fair trade products. The impact is profound but no one really believes that.

3.) We want to be martyrs. We want other people to admire us for tirelessly devoting ourselves to different causes. We’re afraid to want things because the last thing we need is another lecture about how there are starving children in Africa. (I’ve said it before and I’ll say it again: Africa is not the only place where children are starving!)

There’s no place for me in this narrow-minded definition of social justice, so I’m redefining it. Buying environmentally household products is an act of social justice. (After all, poisoning your neighbor’s water supply is not exactly a loving thing to do.) Buying fair trade tea and chocolate is an act of social justice, seeing as depriving someone of a decent wage is also unloving. Signing online petitions totally constitutes speaking up for the defenseless.

How do you define social justice? How do you make it a part of your everyday life?

Hard Questions

(Note: The poem I’m about to share with you is not directed at any particular church or ministry group. This is in response to several issues I’ve encountered in a handful of different churches and groups over the years. My intention is not to slander anyone but to be honest about the fact that I have been seriously bruised by many people in many different circles. My intention is to express the truth that our words and actions can affect others in extremely negative ways.)

When you stop going to church after ten years,
people ask you, “Why did YOU stop?”
“What are YOU doing to stop this format from working?”
It’s you, you, you

They expect you to answer THEIR questions,
not turn the tables and ask any of your own

I went from being afraid to ask questions
to not having anything but questions:

“Where are you when people need you?”

“Why do you scare people into eradicating healthy boundaries?”

“Why do you question my integrity when you have no reason to do so and when you know full well I have every reason to question yours?”

“Why do you care more about being right than about unity and connection?”

“Why do you assume I’m worthless just because I’m an introvert?”

The list could go on and on!

A good rule for writing is to write about things that scare you, especially when they don’t scare anyone else.

It scares me that no one has been able or willing to answer my questions.

More than that, it scares me that this doesn’t scare anyone else.

The Internet Doesn’t Slander People. People Slander People.

The social media world has been pretty heated these past few months. A church I had been involved with for a few years wound up in a church politics situation that got very ugly. I didn’t mind that people were discussing the situation; discussion can be healthy. But grown adults were acting like junior high kids. Now the internet is abuzz with people praising and opposing the whole situation with Hobby Lobby. (Google it if you’re not in the loop. I’m too frustrated and worn out to get into it here.) As social media gets more accessible and more user-friendly, we’re taking “freedom of speech” to new heights, to put it mildly.

I had a particular situation awhile back where I posted a blog entry and someone I was friends with at the time wrote an extremely inappropriate comment. This person had crossed the line between disagreement and hate speech. I could not leave that comment on the internet with a clear conscience, so I deleted it and wrote a message to my friend explaining why I had to do so. He wrote back that this wasn’t the first time a blog or group administrator had removed his posts, and why couldn’t anyone stand to hear from someone with a different viewpoint? Well, after hearing more about what was going on in his personal life at the time, I realized he had some serious character issues that had nothing to do with me or anyone else, and it had everything to do with him.

I’m going to say that part again: The internet was not to blame for his behavior. The internet cannot be responsible for hate speech any more than bricks can be responsible for the construction of death camps. What he wrote was a reflection of what was already in his heart.

I’ve read a lot of articles and posts pertaining to the recent Hobby Lobby kerfuffle. My absolute favorite actually opposes my personal viewpoint of the situation. It’s my favorite because the author is not out to slander anyone but is sharing her viewpoint in a well-articulated, gracious manner, and I don’t feel like she would wish me ill if she knew I respectfully disagreed. She used the internet positively because she is a woman of excellent character.

Who we are off-line is who we are going to be online. The internet doesn’t slander people. People slander people.