Showing posts with label advocacy. Show all posts

While I didn't always realize how lucky I was, I have been fortunate to get to witness the variety of instances that advocacy has happened in my life. Much of this is because my parents stressed this as a part of raising me, (something I thought was noticeably different in the way they raised my brothers) - there will always be something that is 'right' for me no one will know about unless I make it known, unless I advocate for it. Whether it was at IEP meetings, at the start of a new school year, a new medical professional, after school teachers, guidance counselors, the parents of my friends, the bus driver, police officers, flight attendants.. the moments I've watched advocacy happen are diverse and never-ending! 

If you are like me and you over-analyze everything until it is a mushy pulp, then maybe you are also confused about what it means to be a woman with a disability.

Before I begin: there are many other bloggers out there who focus solely on this topic, hundreds of articles, and academic research that is being done in this area. I am just going to attempt to fumble my way through what I think it means, or doesn't mean, or something..

*BIG SIGH* Here we go:

• I think it means that I am particularly hungry for all things self-empowering. If you asked me to define the word self-empowerment I might give you some vague definition that has to do with... achieving goals, self-motivation, confidence, and knowledge to tackle the challenge at hand. Throw that all into a pot, wave your magic wand and voila! 
• I believe it means I sometimes get condescending behavior and 'social norms' for how women are treated in society mixed-up, A LOT!
• It means that I have yet to find high heels that don't look totally goofy and dumb when I wear them sitting down.
• Being a young woman with a disability means I am, personally, staunchly averse to all behaviors related to "playing the victim" ... even when I may in fact be the victim in a situation, sometimes I would prefer to pretend that I actually am not.
• It means that via nature's natural roles I find myself easily able to listen and empathize with others.
• It means that it is important to me to be unafraid to take on leadership roles.
• It means that it is even more important for me to be able to speak-up!
• Sometimes I might misconstrue criticism as a personal fault, or as a fault of the disability - and be at a loss for what to do or how to respond. Many times I might be overly sensitive but you, of course, would never know.
• I often think about the way I adapt to situations and always leap at the accommodations that are the most elegant, diplomatic, non-confrontational, non-disruptive. 
• I sometimes wish to blend in.
• It is important to me that I know my choices, options, and how to access all of them. Also that they are easy to access and not a logistical pain. 
• It is important to me that others in my situation are given the same opportunities, same access, same boosts of encouragement. If they are not I automatically feel bad, that I did not do enough to help others achieve; part of my achievement means that others are also able to achieve.
• I get frantically nervous about whether common practices of chivalry are done out of social politeness or out of assumptions that I cannot fend for myself.
• I am naturally self-reflective and uncomfortable with some of the things that I discover about myself. Those thoughts hang out in my head for a while until something else 'more important' knocks it away. 
• It is important that someday I am comfortable with being vulnerable, because I have recently discovered that is a powerful experience. However it is something that I would rather first flee from than face. 

In less than a month I'll be taking part in Wishbone Day  - a day of international awareness for Osteogenesis Imperfecta. Obviously it's the condition that I was born with, but there are hundreds of reasons beyond myself for why I will be rockin' out in yellow on May 6th. And to explain some of those other reasons let's look at what's been going on this month alone.

I'm that person who gets visibly frustrated when my internet is being slow and a site is taking for-ev-er to load. Time and the ease in which we are able to do things these days is astounding; every parent of the 20somethings in my generation is quick to tell us a "back when I was your age.." quip, but it wasn't until recently that I realized the progress that has come over time on a more personal level.

One of the projects that I'm lucky to be working on involves research on the disability rights movement. Through interviews of those involved, reading articles, and collecting old newspaper clippings from the late 70's - I've been tracking a small piece of the disability advocacy work that went on in the state of MA. My research has led me to when that universal 'wheelchair' sign was first being introduced; I have newspaper clippings of when the words "...Society for Crippled Children..." were acceptably emblazoned across headlines; I have interviewed people who remember the days when buses were not accessible, or the days when there were no curb cuts -- anywhere!
During the interviews as I'm listening to people tell me what it was like "way back then.." I am almost ashamed by how willingly I've just assumed "well of course I should be able to do that!" Or "...obviously that's accessible, I mean why wouldn't it be?" And "Of course I can take public transportation, d'uh!" Not realizing that all of those things I take for granted were once non-existent and are now the product of an entire community who fought for a literal level playing field.

One of the individuals I interviewed is actively involved in public transportation access for Boston. During the interview he was telling me about a time when public buses were not accessible, and even further that the Greyhound (and other coach) buses did not become accessible until 1993. Immediately I had a flashback to four years ago when I stubbornly "ran away" from home to attend a semester away in D.C. I remember buying my one-way Greyhound bus ticket one night and the next day, to my family's dismay, boarded the bus and never looked back. There were a number of hurdles and personal barriers in that process of participating in a study-away program in the nation's capitol; but never once did I think to myself I can't go because it won't be accessible. As I listened to the guy tell me about the marches, protests, and demands that the disabled community worked for to get to the point where I was able to pursue my own independence -- I became extremely humbled by the movement's work and progress since the early 70's.

I now have greater respect for the components that go into my own goals of independence, but each decision and step I make towards that goal is now put into perspective for me: access is not just about getting in the building right here and now; access is also about setting the standards for future generations, so that those 20-something kids like myself can now go about our days zooming from point A to point B with the mindset of "of course I can do that!"

"Sandy do you want to tell your teachers some things that would help you hear better?" I think I was in the sixth or seventh grade. My speech therapist that I'd been working with since the first grade had prepped me for this part of the conversation. It was early in the school year and we were gathered around a table going over my IEP plan.


In the beginning my speech therapist and I worked on pronouncing my own name. The "S" at the beginning of "Sandy" was pretty much silent to me until I was about 8 or so. "Hi, my name is Thandy" is how I would introduce myself to others as a kid. We also worked on endings of words that had a "t", "-ed", "-s" or the one I hated most: "-its." She helped me learn how to carry my sentences all the way through when I spoke aloud, reminding me to not drop off at the end, and we worked on my lisp (a word I had trouble pronouncing until well into high school); she taught me about adverbs, and compound words; we practiced lip reading, and ASL. I didn't consider her to be just my speech therapist, she taught me language and how it can be used, how it benefits all of us, and all of its little tricks and secrets. But the most important thing I learned from Mrs. B was how to advocate for myself.

I know that my hearing-loss isn't something that I touch upon much in this blog, but its something that O.I. affects and also, of course, affects my day-to-day life. In school I was usually not only the only one in a wheelchair, but also the only kid with a hearing-impairment (at least that I knew of). I wore hearing-aids and an FM system in school beginning with first grade till the 12th grade, and even today I will OCCASIONALLY wear one hearing-aid. (It depends on my mood, do I want to listen to the ENTIRE world today?) Having a hearing-impairment can negatively influence a student's learning experience in very obvious ways, but just as with any other disability learning to work WITH the impairment is the key to success. I think that my weekly sessions with my speech therapist, and our focus on language.. actually had a lot to do with my fluency and comfort with the English language in general. It's one of those old lessons in practice makes perfect, but in this case it helped that the student loves the subject of English and writing to begin with.
Mrs. B was the rare teacher who was able to seamlessly show her student how learning language will also help you overcome challenges. When we were practicing lip reading she taught me about context clues, and how even though certain words LOOK the same on the lips, the context of phrases will help you decipher what is being said. This helped a lot when I took my college entrance exams and had to fill in missing vocabulary from sentences -- context clues! It was a skill I had been learning since the 3rd grade! Or as we were going over phrases she would tell me about ways to make it easier for me,
"How did you get that phrase so quickly?!" She proclaimed in mock disbelief.
"Because you were facing me, and I was looking at you." This quickly became not just the right answer for her little games, but also the key to my success in the regular classroom as well.

I learned how to address teachers who would talk while writing on the board, their backs facing the classroom. And although I was able to pick-up 80% of what was being said through the FM system, I never felt confident unless I am able to lipread as well. This is true even to this day. I get frustrated when people scream at me from afar, or when friends will whisper things in a movie theater. Even if I DO hear what is being said, I get frustrated because my natural instinct is to say "I can't see you, and if I can't see you then I can't hear you."
Having an FM system also means that I pick-up on ALL the background noise in a classroom. Every squeak of a chair against the floor, every soft rumble of the heater in the background, every hum of the lights in the ceiling, every single side chatter of conversation between students.. the list is endless! Being able to address my peers in a confident and cool manner about lowering their voices, or stop tapping your pencil! Was also an infinitely important tool that Mrs. B armed with.

I'm a firm believer that the more a student is able to advocate for his or her needs in the classroom, the better learner she or he will become. And in many instances this requires a certain level of comfort with the disability or learning difference that the student may have! So in the end, this is all the more reason that our educators and parents learn to form learning communities that foster inclusiveness and acceptance. The easier it is for students to speak-up for themselves, the stronger they becomes as individuals and the better prepared they are for the world OUT THERE!

Continued from previous post

"No. No you can't. Absolutely not." 
"Why not?"
"What happens if you get hurt? Who is going to take care of you? What happens if you fall out of your chair and break something? What about your disability benefits? Do you know if they will still work out-of-state?" 
They paced and shuffled around my dorm room. My first mistake was having the conversation in a stuffy cement 6ft by 8ft block. I did what I usually did when they got frantic: Ignored them and looked away, stared out at the window and began counting the seconds till they calmed down.
"This is the best town in allll of America for you to go to college and you want to LEAVE? Are you crazy?! And not to mention you're right by the best hospital in allll of America too! With the best doctor! He knows you best!" Still, I remained silent.
It was like a very informal court case. I had to wait for their side to be done screeching their arguments before I could launch into mine. In my mind though I had all the answers to their questions, not only did I have all the answers but my responses screamed aloud in my head. I wanted to shake them by their shoulders and tell them that I was capable of so much more. That it would be okay. That I was sure, somewhere inside of me, that studying away was the next step for me. I knew their questions would not be about why are you choosing to do a study away program? (In truth, my parents didn't even really understand what my major was about anyway). But instead their questions were focused around do you think you'll be able to survive away?

"You guys, I'm going. I've already got it all planned out. I'm going." I could not have chosen to utter those words at a worse time. They were emptying my laundry hamper into a bag that seven days later would carry fresh clean clothes. Dad was putting boxes of pre-cooked meals in my room-sized refrigerator.
"You can't handle yourself on your own. You just can't. Who is going to do all of this for you?" 'This' is what my parents had been doing for the past 19 years.
Sure, my mom told me about how she gave up her job and career when I came along. And when my family moved to section 8 housing in a Boston suburb it was because we couldn't yet afford an accessible home to live in. I knew all of that stuff but it wasn't until that day that I saw how centered around ME my family was. Specifically, how centered around ME my parents' lives were.
I remember swallowing a very large gulp in my throat that day and at that moment. It made me incredibly sad to realize all of that - of course I was thankful and grateful for them but in that same realization I recognized I had something to prove for myself and them. So there I was wanting to get away, to show them not only was I capable of "..doing all of this.." for me - on my own, but that THEY had their own lives to live too. Their own potential outside of the lives of their children was unfulfilled, I saw it that day as my laundry was folded away into the drawers and food was put into the fridge for me. There are many times when I wonder where the world would be if every child could have had such adamant parents like my own.

The days following didn't get easier until after the long winter break was over. My parents still didn't realize that I was actually intent on leaving until they saw the boxes of things from my dorm my friend M had helped me to move back home. As I carried my bedding and sheets into the house the look on my dad's face was one of stunned sadness and shock. Somehow I knew that they wouldn't realize I could do "this" on my own until I was actually there on my own; knowing that helped me deal with their anxiety and the many arguments that occurred during that holiday season.

That night I was leaving for the bus station my parents finally came around (I mean, really, they had no choice by then). They gave me two large suitcases to pack all my stuff in and sent me on The Ride to South Station (earlier that semester I had saved all my work-study money to buy a one-way bus ticket to D.C.).
"So you're leaving home for the semester eh?" The van driver asked me.
"Yeah, I'm doing this US foreign policy program at a university in D.C. I'm really excited!"
"I remember when I left home for the first time, I had gone to the peace corps for two years and that was overseas..."

Study away/abroad/independence:

• Know that it's possible. But also know that that possibility won't be handed to you, it'll take research, adaptations, and thousands of annoying logistics - but it will work. 
• One part I had left out was that after talking to my parents I even wrote a letter to them explaining, calmly, my reasons for going and why I knew I would be able to handle it. To this day, it is probably the most honest piece of communication I have ever had with my family.
• I always knew I wanted to try to live on my own  WHILE MY PARENTS WERE STILL ALIVE! Though they might be several states away, I knew that if something went awry at least they would still be there to help me. This may be blunt and a creepy thought to think about, but ... think about it!
• Along the same lines of "know that it's possible," also know that others have done it before you. A simple google search of 'disability independent living' will reveal many sites and resources at your finger tips!
• Also, if you are a student at a college/university - chances are there is a Disability Services Office at the ready to make your life easier. I was very fortunate to have an incredibly well connected office at my school and the woman in charge helped me from the start to the end of the my study away experience
• For parents: your child seeking independence is natural, inevitable, and I hope it is a source of pride for you (I am not a parent so I have no clue..). And of course you will be worried (we expect you to be!) but as a child I also want nothing more than to know you always have my back, and that you will trust me to listen to what you are saying and go my own way. 
• For young people: Your parents are totally gonna freak out. We will always be their "fragile babies" and I'm sure we have all heard the horror stories about the time "so-and-so had no clue about O.I..." But now it's not like that! Now it's our responsibility to educate and help others be aware of what O.I. is about, and more importantly, what we as individuals are about! Remember those times our parents talk about and use them for more than just amusing stories around the dinner table. 

• I must admit that I feel odd offering suggestions on this topic as it is something I am forever working on myself. But, like so much else in life, I think the first lesson is taught from the family. Whether parents are successful or not in advocating for their children should not be the "main" steal for the show. Instead HOW mom or dad goes about advocating for their children should be an experience every child - disabled or not - witnesses firsthand. 
• Understand the fine lines between advocating, complaining, and arguing. This is something that I am only beginning to understand the differences between.
• Just because you are advocating for an issue doesn't mean that it is also your SOLE responsibility to provide a solution for the issue. Everyone should be involved. 
• Just as you should not feel like you're completely responsible for a solution, you should not need to feel alone in advocating either. Friends, family, other organizations/individuals can help as well. 
• It just takes practice.