On Learning, Changing and Waking Up.

My perspective on my own disability and Disability Rights has changed a great deal since November, when I started working as a Housing Advocacy Associate at Access Living (a disability rights non-profit in Chicago).  I read a lot about what people like me had to accomplish in order for me to experience the level of comfort and inclusion I do now and did in school. I learned that in order to convince Chicago to make city buses accessible, for example, individuals chained themselves to buses. I learned that the only reason the 504 education law was passed to protect disabled students was because in 25 disabled people and their allies moved into a federal building in April 1979 for 25 days. If they hadn’t done it, we would still be in “special schools”. I learned that several lawsuits had to come to fruition before citizen with disabilities were thought of as able to live outside of nursing homes and that at least in Illinois, people still have to fight to stay out.  I also learned about the many systems still in place that make it very hard for those of us with disabilities to work, earn money, and live as independently  as possible. Poverty keeps populations marginalized—and 70% of individuals with any kind of moderate disability live in poverty.   I started realize that I have felt guilty about my Cerebral Palsy for my whole life and that, that shame has made a bigger contribution to my self-destructive behavior than I wanted to admit to myself. I was mad. I still am I guess.

 I began the depressing process of looking back at my life and realizing how many unfair things in my life happened because I was born crippled. The saddest part to me was that I had expelled so much energy convincing myself that my CP had nothing to do with any of that unfairness. I had convinced myself that the people I was dealing with weren’t like that, which in head made a lot of shit my fault. I was so afraid of becoming bitter about my disability that I became ashamed of it.

I don’t think that all of the people who made assumptions, ignored me, or excluded because of how I get around are ableist. Some of them, were people who love me.  In fact I think most systems are ableist but most people are not.  I think these people are on most levels do not realize how quickly they write off subconsciously disabled folks because they were accidentally taught to, and of course we’re not alone. It not because able-bodied (Straight? Financially secure? White?) mean to hurt people Hell I’m 27, disabled, and I had ignored all of this in the name of being positive. 

I suggest you learn about, really, really learn about the marginalization of disabled people and other oppressed groups. Start making decisions consciously, education is the only way to do that. 

One More Girl's Plea to Turn on The Lights.

I have written several openings to this post about my struggle with mental illness: The day I was put admitted to the psychiatric floor, I did my hair.  OR:  One day, I decided to count the number of lies I told, and got to thirty before I was  home from school. OR: At age 22, I threw the kind of hissy-fit you’d expect from a toddler, because my friend had to go to work; snot and tears thinly coated my face. I was shaking—I was screaming. The problem with each of these options is that then of course I have to tell a story, and I hate each of those stories.  The stories that begin with those sentences embarrass me. They exhaust me and they make me feel like maybe the people who know them will disappear from my life.

The truth is that as involuntarily as developed Cerebral Palsy shortly after birth, I developed at some point in my early life, an unrelenting fear of the people I love going away. It is anxiety that is so enveloping that admitting to its existence in this way is making me feel slightly sick. I have a loving family, and although my childhood wasn't without loneliness or pain, it didn't cause this. Most days of my life have been free of reasons to complain. My anxiety is as close to innate at something can be without meeting the word's definition. I am surrounded by wonderful people, who I know love and want goodness for me. I want my friends and my family who may read this to know, they did nothing to create this in me. My supporters are the only reason that now I live, usually happily, with my anxiety.    

Nobody built me this obstacle, but I certainly did not choose for myself. I do not want to feel like an elephant is sitting on my chest when I have to ask for help. I don’t want to close my eyes and remember everything I said in the last month while my throat feels like it’s shutting in shame. I wish my stomach thought of honesty as the best policy.  I have sought effective help, and I am okay. Lots of times, I’m better than okay.

Because I have physical challenges too, I hope I can offer a somewhat unique prospective on these matters.  I know undoubtedly that the last paragraph I wrote would be superfluous in a piece regarding CP. Society understands that I can’t change my legs, my balance, or the way my voice sounds when I get excited. If a stranger tried to imply that I could, onlookers might call them crazy.  It’s different with the other stuff. With the other stuff, explaining that at times I am helpless to it makes me the crazy one… I promise you on my puppy, I cannot control either condition.

This of course does not mean that I am not solely responsible for my sometimes absolutely horrid behavior while in the throes of my anxiety. Like it would be stupid and selfish of me not use a walker and to make everybody wait around while I crawled, it was stupid and selfish me to go so long without seeking help. Humans act  stupidly  and selfishly  when they are trying to avoid being judged-- being labeled. The irony is not lost on me.   Monsters, as they say, live in the dark.

Here’s hoping the world turns the lights on soon. 

On Inspiration Porn

Typical porn is bad for numerous communities partly because it sets completely unrealistic expectations of the human body and sex, and also because its characters are almost exclusively arc types such as   “ditz”, “vixen”, and “clueless man who cannot help himself”.   Inspiration porn which is currently a hot topic in the disabled community, while milder, is similar.    This term refers to media that exploits people with disabilities by portraying the ordinary things we do as extraordinary, and by depicting all of us as perfectly innocent. (See examples here, here, and here)

Many readers may think: Stories and pictures like that are well intentioned and even celebrate people with disabilities. Why would anyone be offended?  This is valid, intelligent question. I hope my response is valid and intelligent.   

Like pornography creates restraining labels, inspiration porn places people with disabilities into in boxes usually marked “angelic”.  Fitting into that box is obviously impossible.  I like to think my C.P. has taught me a lot, but I can’t compete with Tiny Tim, and because people are naturally dynamic and multidimensional, that’s not even something a clearheaded society wants. We often learn our most significant lessons after acting inappropriately. All people, regardless of ability, deserve opportunities to screw up and learned from it.     

Perhaps the weirdest, most painful thing about inspiration porn though, is that unlike X-rated material, which often makes sex look sexier, women look more flexible, and men look more toned, inspiration porn lowers an able bodied viewer’s expectation of disabled people. It teaches them to be impressed when one of us goes to work, or even gets out of bed.  When those around us do not expect that we will achieve normalcy, it is difficult to believe that we can.  I do not subscribe to the idea that people rise to whatever level the majority says they can reach. It is undeniable however, that knowing that strangers, and sometimes  our loved ones see us as incapable, definitely depresses those of us with physical challenges, much like the unrealistic goals the porn industry sets for young women has depressed generations. Undoubtedly, images of women being tied up, or  of couples performing a sex-acts, emaciated, while hanging upside down, are much more detrimental and dangerous  than a cheesy-captioned picture of a wheelchair user; there is no arguing that. The truth remains: you can only be pushed down so many times before you just lay on the floor.  

Most everybody understands the appeal of watching disabled people legitimately succeed. It is fun to see people do something you  thought they never could. I know that life is, in some instances, more challenging for people like me. So, if you’re blown away by a guy with no limbs climbing a mountain, I get it.  What I wonder is how the same   people who are shocked that I have been employed, made  friends, or even  that graduated high school, want me to smile through every experience.  It isn't fair to assume that I am inept just because I walk funny, and it isn't fair to expect me to be the picture of kindness either.  My knock-knees and horrible balance never make me want to stay in bed all day. Battling those crazy assumptions sometimes does. Inspiration porn is one of the many reasons I am engaged in that battle.

Almost everyone in the world means well. Sometimes, they just can’t tell how tired others are.  Maybe this will post help someone understand. That would be awesome. 

On Pet Peeves

It drives me crazy when people mumble.   I almost involuntarily judge others for saying “I seen it”, as opposed to “I saw it “or thinking that “why for?” is an appropriate question. I have a hard time going on second dates with men who talk about  video games for more than thirty seconds, but I like to discuss novels, movies, and trashy (and not-so-trashy) television shows. I simply do not believe anyone who says they never fight with their friends or lovers—and it irritates me that anyone would assert that. I could list petty pet peeves I have for hours… but nobody would give a damn. They all have their own lists of annoyances, and many of them are probably habits of mine.

If my life can be compared to that of the general population this means two things:

1.       We should not dwell too much on what other people do wrong. They get under our skin, like we get under theirs.  As long as they’re relatively respectful, truthful, and tolerant, all the other stuff should be looked over because they are forgiving our shortcomings, too.  If that nice, honest, accepting person enjoys some of whatever we enjoy, and usually makes us laugh, we have a friend. If we find that friend physically attractive, at least most of the time, and feelings like butterflies, or somersaults   or some other sensation that does not normally occur in otherwise healthy stomachs are felt, we can become lovers. If we are great friends and lovers for a while, hopefully we can subconsciously ignore the mumbling, the boring conversation, and the horrid grammar.

2.       We can stop berating ourselves for the faults we know we have that may irk our friends, significant others, coworkers, family, or any stranger we may meet.  We excuse their stupid quirks way too often for that. As long as we do our best to be respectful truthful and tolerant, they should accept us.   If they can’t, then we have to surround ourselves with people who can.

Of course, life insists on being more complex than these guidelines suggest. Everyone has different definitions of respectful and tolerant, and even of honest. If we’re lucky, the individuals who raise us care enough to pass down their convictions.  Painful, attitude-altering moments force us to be incapable of attempting to be compassionate and open-minded, and make us feel like lying is our only choice. When we are in that messy psychological state, it is virtually impossible for us to avoid focusing on their pet peeves. And, let’s face it; I’m a pretty fortunate girl, so it is entirely possible that my life should not be compared to that of the general population. I think when am in what Mad-TV’s Stuart (the star of their only sketch worth watching)  called “my dark place,” it is important to try to remember that in spite for everything, those two things are true… Nobody really cares what bugs me and I shouldn't care either. What matters is to try to do and be good.  As always, my hope is that it will help somebody else to read the thoughts that help me. 

On Hopes for the Future

Dear Future Child of America,

 I hope your whole family has the ability to take care of themselves, and meet their medical needs.  I hope you are well-fed. I hope you go to school and never worry if an act of violence will be committed.  I hope you feel like advancing your education is possible, and employment  is probable. I hope you come into a world that makes you feel significant and safe. If you do not, none of the other fluffy hogwash I am going to tell you that I wish for you matters at all. But, I’ll ramble anyway.   

 I hope you grow up proud of the people from whom you came. I hope you experience the comfort of deeply-rooted family tradition, and that those traditions are among your fondest memories. I hope you respect your parents because they taught you to respect others. I hope you respect your siblings because they have forgiven for all the petty crimes you committed against them as a kid, and enjoy you.   I hope you're lucky enough to get to experience the adults of your childhood well into your adulthood. If you do get that fortunate, I hope you realize what a gift it is. It is completely natural for the gift of family to annoy the living hell out of you though. 

I hope you go through junior high and high school without too many emotional scars from bullies or friends who become jerks. I hope that you hold onto childhood friends as steadfastly as you do those traditions I wrote about. I hope you make new friends in every phase of life, and when you find good ones, forgive them as if they're family. I hope you make your friends laugh, and trust them to cry with you.  I hope you stand up to good friends and allow them to stand up to you. You'll lose some friends along the way, because people are weird (yourself included). I hope you hug the ones you keep.

 I hope you think you are good looking because life is easier if you do.  You probably won’t though. So, I hope you know three lovely individuals who you actually believe when they tell you they think you are pretty or handsome. I hope no one ever gives you a definite definition of “good-looking”. If someone does, I hope you ignore them.   I hope that people have healthier bodies and minds by the time you realize that both bodies and minds can be sick.

I hope you feel sexy often, when you’re old enough to feel sexy. I hope that people stop thinking that sexualizing you at three is acceptable.  When you are an adult, I hope you enjoy sex guiltlessly, with whoever you choose to sleep with.  No matter your gender or age I hope, you really are hard to get into bed because you value your time, feelings, and health.  I hope you respect others’ sexual decisions, and recognize rape as an occurrence that starts with the rapist. Because, by the time you are of age to consider all of this, I hope we are raising fewer jackasses.

I hope you work hard because someone taught you that it is the only way to achieve the many dreams that you have. And then, I hope you work hard because of the way it makes you feel, because it changes things. I hope you take responsibility for letting laziness get the best of you, because it will. I hope you value the people who push you to do better.  I hope you compassionately help struggling workers to do their best.  I hope you forgive yourself when you don’t do your best, so you can improve when you try again. Mostly, I hope you try again.

I hope you experience romantic love that makes you dizzy… for a while and cheerful for eternity. I hope that the “frogs” you kiss are decent humans, or that they at least make you see how decent you are. The chance of that happening is slim but it would save you a lot of pain.  I hope you have a 50^th anniversary party. I hope the guest at the party will hear your sharp-tongued comments from across the room.

I hope you travel by plane, and by book.

I hope you break important rules.

I hope you take care of people, and your community.

I hope you believe that climate change is real and our environment is precious.

I hope you see art when you look at the tagging on building of the roughest street in the poorest city.

I hope you can deal with a lot of unfair breaks.

I hope you grow old, read this and laugh hysterically at how idealistic I was, and that you have led the kind of life that allows you to be an idealist, too. 

(A video) On a cool Moment, Watch

On Breathing A Little Bit Easier

The following is a list of five things I can advise that you do not do because I have done or still do them, and they have made me crazy. I hope that my publishing this, will help somebody stress a tad less. If not, I guess it is a good reminder for me.

1.       Don’t turn yourself into a chameleon because you know how. I am very guilty of catering to my audience when it comes to social situations. I don’t make the same jokes in front of all my different friends—I don’t necessarily appear to have the political or religious beliefs. I have previously patted myself on the back for this because I thought I had a high emotional IQ; now I realize it’s just insincere. Really it’s okay to be yourself.  If you do not agree with somebody you can say so or elect to keep your mouth shut but you do not have to say anything to appease anybody, and they don’t have to like you.

2.       Don’t play the devil’s advocate because you know how. In my family, arguing is communicating and forcing someone to prove their point is something we do lovingly. Not everybody was raised by wonderfully obnoxious clan or people like us. What we would call a healthy debate can hurt them.  Unless you are really passionate about an issue (or someone is attacking you or a loved one personally), just relax. Ignorant people will not get too far anyway. In my opinion, being related to or close friends with someone makes this concept null and void, but that’s me.  Many disagree with that caveat.

3.          Don’t consider those who you feel the need to be passive aggressive with assets in your life. If you constantly feel the need to jab at a significant other or friend because of an issue about which you are uncomfortable   confronting them, it is probably because they scare you. What kind of relationship is that? I would argue from experience, it is not worth much.

4.         Acknowledge the things you do not accept. As a self-admitted people-pleaser, I have become extremely wrapped up in being “non-judgmental” and fearing people thinking I am judging them at all. Everybody has a moral code though, and so, everybody judges. I think it is important to tell people flat out that their behavior makes little sense to you, if they ask. Answering a question doesn't make you a bad person. If they don’t ask, don’t tell, but don’t beat yourself up for your opinion. It will help you breathe easier.  Of course I do think that good people try their hardest to judge actions rather than individuals.

5.       Trust your friends and family to know you are doing the best you can. If you let go a little and trust your loved ones to believe in you without explanation, they’ll do it, and you will have a lot less anxiety. You will probably irritate them less, too.