Showing posts with label disability community. Show all posts

I decided to put together a list of phrases/incidents where my friends and myself have said and thought to ourselves, "gee that person just makes us look bad as someone who is disabled.." or "that person just makes us look like we're just a lazy bunch of disabled people.." 

The person we all know who is content to just live on disability checks..for like, ever.

The disabled panhandler that makes it a point to ask us our name, and calls out to us every time we are within five yards so it appears like we are best buddies to everyone on the block. 

The person who fought a little harder for what she wanted whereas we decided we were fine with the status quo. 

The person who is comfortable and totally chill talking about sex in public, to a non-disabled majority. 

The kid who refuses any pain medication after surgery, the same surgery we whimpered about for weeks. 

The person who didn't just brush off a minor offense, but made it a point to get his message across that that was in fact not okay. 

The person who is a medal-ranking Paralympian, motivational speaker, book writer, triathlon athlete, and then in their spare time they also just happen to be helping their aging parents through claiming their own disability. 

The kid who is standing-up against bullying when at that age we may have just accepted it, or even participated in it as the ones who were bullies. 

The young person who has the guts to tell their family "peace-out yo, I'm moving out on my own." 

The person who bravely reported that their Personal Care Attendant was abusive. 

The individual who worked with their physical therapist for just a little longer so that she could then one day walk without mobility aides. 

The person who told their family members, "no you can't just use my handicap placard whenever you feel like it anymore, especially when I'm not even there."

The person who took their time around the school race track even though they knew it would take three times longer, because we may have preferred to sit in the shade and 'help record times.' 

The person who decided to not use their disability as an excuse, even if that would have been 'easier,' more socially 'expected/accepted,' and even medically condoned. 

The person whose life-style and life-stage most closely resembles the life-styles & stages of their non-disabled counterparts. 

Don't kid yourself, we have all done it I'm sure. We've all compared ourselves to one another. That's the nature of being in a community, and a part of the process of getting to know one another; it's almost necessary I think, to question and think about the impact that others' actions might have on our own perceptions of ourselves, or on the community at large. I think doing this is somewhat healthy because it keeps us in check, it keeps us critical of one another - and most importantly of ourselves.

(Students of U.S. History or the U.S. Constitution/Declaration of Independence will recognize the language I based this off of. For all others, this was based off of the Preamble & introductory texts to the U.S. Declaration of Independence.)

In the course of growing-up as a person with a disability it eventually becomes necessary that I, as an adult who contributes to the well-being of society, assumes ownership and responsibility for this identity; and in so doing formulate my own opinions, thoughts, and actions as having to do with being a proud individual with a disability.

Towards the pursuit of life, liberty, and happiness -- I hereby hold these truths to be self-evident for me: that all people are created equal, that we all have certain inalienable rights, that among these are human dignity, a life lived in and for independence, and the progress towards our individual dreams.

These statements are not made in contempt or spawned by an urgent call for revolution, but instead are said out of voluntary self-awareness for change. Change from a paradigm of what was once comfortable acceptance, towards the desire to reconstruct these views of a disabled individual for a more intrinsic and autonomous selfhood. There comes a time when the collection of life's 'what once was' requires a re-evaluation in order to make progress towards our goals. And with that it is also understood that whenever any form of negative attitude, misconception, stereotype, ignorance, or hate becomes a hindrance to these ends -- then I commit to the responsibility to alter or abolish such obstacles to the best of my ability.

There is some amount of self-destruction involved for each time I have shrugged my shoulders, or when I have simply nodded in acceptance of being turned away from or by anything. Certainly it would have been exhausting and even an unrealistic endeavor to take on each confrontation, and even after this is written that would still be the case. Prudence will be exercised during such events as guided by the inherent rights of all people, and by those leaders of the disability community whose efforts and means I am compelled to give my support.
But when a long history and pattern of discrimination, abuse, injustice, inequality, treatment aimed to reduce the dignity and independence of my life hints itself -- it is my right, my duty, to abrogate such acts in the hopes that some other disabled individual of posterity may face less treatment so base in nature.

The paradigm of change that this statement was created to enact is made to ensure the security of success towards the progress of my dreams, and by doing so the dreams of those who will come after me. An awareness for change now is what spurs this statement today, but it is the hope for a lasting change that I would like for this statement to continue holding a truth for someone else.

Such have been my general experiences as a young adult with a disability; and such is now the necessity which has led me to alter my perceptions of the life of a disabled person I once subscribed to.

I the proud individual with a disability, and member of the disability community, in order to form a more perfect Self-Identity, establish Self-Respect, insure Inclusion, provide for the common Understanding, promote the general Acceptance, and secure the Pride and Power of disability to myself and posterity - do ordain and establish this Declaration of Being Disabled for Me.

A couple weeks ago I was proved wrong, and though now that I think about it - it shouldn't be a complete surprise that I was wrong. Nevertheless the moment struck me in a jarring way, so much so that seconds after it happened I thought: this is totally blog content material! So here we are:

Earlier that evening a torrential downpour had taken many by surprise, especially this population of young students - many of whom probably checked on weather.com and seen that 10% chance of Precipitation. No one was expecting there to be rain, much less thunderstorms that my friend had compared to "monsoon season in India.." as he strolled unflinchingly beneath pelting raindrops. I held my umbrella, no - I gripped it in my right hand, tightening my fist every time lightning flashed as I tried to prepare myself for the thunder to follow.
From (too many) previous experiences, I have learned to always keep an umbrella hanging from the back handlebars on my wheelchair. "You're practical.." he had noted. I shrugged and nodded, I probably went into some rambling description of how getting wet doesn't bother me, it's the sitting in a wet chair that bothers me. It's the feeling of your underwear clinging in all the wrong ways to your skin. And the way the raindrops slip into the collar of your shirt as it treks down the back of your seat, and then it all stays there like a slow waterfall, building and pooling around you. This is most noticeable when you go to rest your arms on the arm rest and find it wading in a puddle of fallen sky. By then we'd reached the subway station, got on and went our separate ways - and I thought to myself: one can never complain about too many new friends, especially observant people. There are not enough observant people in my life, I decided.
When I got to my stop I waited outside the bookstore for the van to pick me up. I watched how the new students seemed particularly keen on watching where they were going. Old students were content to lose themselves inside earbuds, or glared angrily at the new students who were walking too slowly towards their Friday night plans. New students clung to one another in packs, their eyes reflected the shine of their new environment. Returning students saw their future, they were already looking forward to May or thinking back to sun-soaked summers.

"Hey, do you need any help?" An older gentleman asked me.
"No I'm all set, thanks. I'm just waiting for someone" I responded. I saw wisps of silver hair poking from underneath a baseball cap emblazoned with a white H against a deep crimson background. He was wearing a dress shirt and khakis, just about to cross the street when he turned to me.
"Well, keep up the good work. I give props to you, keep doing what you do!" That was when I saw the CVS bag hanging on a silver hook, where I had expected his hand to be. His other hand hung by his side.

Wait what? I thought to myself. What good work am I doing? Shouldn't you, a fellow person with a disability know better than to say that? Why are you giving me 'props' for doing something as simple as sitting and waiting? I was shocked. Silenced. I could only stare back at him, one eyebrow arched questioningly,
"Uhh.. okay." And then the neon signs had switched, and the gentleman had 35 seconds to cross the street.

As I sat there waiting I came to realize why I was so bothered by this brief exchange. Yes it was the condescending words, it was the wildly wrong assumptions he was making, it was the wildly wrong assumptions I was making.. but most of all I felt slightly insulted because this gentleman had behaved contrary to how I had categorized him to behave. He had treated me as if he were not disabled. As if he did not know how irritating getting praise for sitting and waiting, for simply living my everyday life would be.
But just as I think he was in the wrong to have said what he said, maybe I am also in the wrong to have assumed he would fit inside that square peg that I assume he belonged in.   

This title for today's post makes my face cringe. Whenever I hear it being said I have this internal instinct to want to flee from the situation, from the group of people that are talking, a few times I have even wanted to not 'be disabled.' An immediate disgust for this part of my identity overcomes me and I think this comes from shame, as well as confusion. Despite this discomfort when I hear "oh she's more disabled than you..." or "he isn't as disabled..." I have to admit, with head hung low, that I have uttered this statement more than a few times.

I have written before about why I am uncomfortable when others classify the severity of O.I. that I have. And that certainly has much to do with why I also dislike saying that someone is "more" or "less" disabled: who is to judge? How is it judged? How is severity measured? It seems not exact enough for something that, could potentially, be a hugely defining aspect of a person's identity. With that said, who am I to say "she isn't as disabled as me."

Beyond this it's also the whole messy concept of comparisons. The apples and oranges explanation aside - what are we saying when we compare our disability-status? In my opinion, it seems that we are first defining the benchmark for what a certain base-line of disability looks like. "This is what this level of severity means because I embody that..." Secondly, it also seems that we are setting someone else 'below' or 'above' that base-line of disability that we arbitrarily established. "She is more disabled than me because she needs... or can't.." Or we say "He is less disabled than me because he doesn't need... and can..." It's uncomfortable to me. Like when that random Uncle we have only met twice decided to show-up at our graduation, and then give us a t-shirt with the year he graduated from high school...as a congratulatory gift. Awkward all-around. It doesn't fit. The act of saying the words seem like a half-hazard gamble at best.

As I have gotten older I have tried to be more conscious and aware of the things that fly out of my mouth. I think that it is also the fact that, as I have gotten older, I have been more active in shaping my own identity! The attitude in which I have explored my identity as a disabled woman is in-line with the rest of my identity as a human being: independent, stubborn, forward-thinking, curious, enthusiastic, ambitious...etc. Putting those aspects of my identity together has left very little room to allow others to tell me how disabled I am. So, like my parents used to say, if I don't want to be treated like that then why should I treat others that way?

But I am not going to deny the reality of the disability community, and the way we speak to one another. The reality is that we do have limitations and abilities that vary from person-to-person. The reality is that we do have methodologies that categorize us into X, Y, and Z for the sanity of our medical team, care takers, pharmacy companies, etc. For some this may be a personal measurement of what is to come in their future health, or the work that needs to be done to 'get there' - to that point of being 'less disabled.' As people who communicate the reality of having a disability, it is ultimately not wholly surprising when such statements slip out of our mouths. I am willing to assume the best and hope that the majority of the time... these statements are said with good intentions.

As a final thought: In my personal efforts to add what equality I can to the communities that I am a member, I will actively commit to not spreading us farther apart by placing ladders between people. We aren't a community that is going to function successfully if members feel entitled to arbitrarily climb 'above,' or are carelessly placed 'below' someone else. We're in this together, so let's just settle in comfortably with one another as ourselves.