Showing posts with label Disability. Show all posts
Showing posts with label Disability. Show all posts

Tuesday, November 8, 2011

separate is not equal

After buying glitter tape and binder rings for a scrapbook project, a friend, my roommate, and I went to International House of Pancakes. One of the people who greeted us nodded her head to one of the waiters and said have them sit away from the other customers. This was because we had our well-behaved guide dogs with us. After being seated, it took awhile to order. We realized that absolutely no one had been sitting near us or had been placed in our section after we arrived.
The manager, the same lady who made the comment about us sitting alone, came over to ask if everything was all right. When my roommate said we were concerned that she and the staff weren’t informed on service animals, she said she knew the law, and IHOP held that same standard. In fact, another restaurant where she previously worked, there was a regular group of service dog users. We asked why no one was sitting near us, and she said someone was but changed her mind.
It was as if she were just talking at us and missed the point entirely. Separate accommodations does not mean equal access to services. It didn’t mean that for African Americans before civil rights, and neither should it for disabled people.

Sunday, November 6, 2011

Teach them well

As teachers of blind students, we have so many tasks to complete. From making sure the students are literate in Braille and using a cane to reaching milestones for age appropriate expectations to taling to them about blindness, some things can easily slip through the cracks.
One of our most important jobs is to make sure the blind student can advocate for himself or herself. This could include anything from saying “I can pick up my book,” to asking a teacher for the list of textbooks for the next school year to see if any are available in accessible formats. As important as it is to teach the student to advocate, it is also crutial that the student knows that you and other members of the IEP team will be supportive and that he or she should talk to you if they are having difficulty with other teachers.
I was fortunate to grow up with a mother who believed in the National Federation of the Blind’s philosophy. She taught me that being blind didn’t mean I couldn’t be independent at home and at school.
As a first grader, I had a paraprofessional who stayed with me all day; her job was to help me with class assignments, go to lunch with me, and make materials accessible. However, she was overprotective and didn’t want me to walk by myself, run outside at recess, or cary my tray and open my milk at lunch. I eventually had enough of this treatment. One day, I exited the van to go into school, and as the tactless six-year-old I was, I pushed her hand off of my arm and said, “go away, I don’t want you, I can do it myself.” This made her upset; later the same day, we had peanutbutter and jelly sandwiches with tomato soup, and I said the same thing as she took the plastic tray from my arm.
I don’t know how much time passed; it could have been the next day or the next week, but my first grade teacher informed me that there was going to be a meeting in the afternoon to discuss my behavior. When I got there, my first grade teacher, paraprofessional, the special ed teacher, the school psychologist, the principal, and some other adult were sitting around a big table. I was scared, and I remember thinking “Why do all the grownups want to yell at me?” They told me to sit down, and I refused.
They talked at me, lecturing on how it wasn’t safe for me to get out of the van by myself, especially after I fell down the last step because my shoe was untied. I shouldn’t carry my tray, especially on soup days, because it was very hot, and I could burn myself. I couldn’t walk to class alone because I would geet lost. I shouldn’t sass my aid because she was doing her job and helping me. I needed to be a good girl and do what my teachers said because I was there to learn. It went on and on and on, and by the time it was over, my little legs were very tired, and they accomplished what they set out to do: silenced me.
After that meeting, and for the next six years I was an extremely quiet child. When my parapro asked me questions such as “do you like this?” or “Did you miss me?” I always nodded or whispered yes, even if I truly disagreed with her. I didn’t share my opinions with anyone because I was too afraid of getting in trouble again. I didn’t tell the teachers when I saw other students doing something wrong. And most importantly, until after my mother and others fought for a long time with the rest of the IEP team, I didn’t travel many places by myself and didn’t carry my tray at lunch because I had been discouraged and internally accepted that I couldn’t do it.
All it takes is one time to plant the seeds of uncertainty and doubt. I told my mother who fought for me, but it never occurred to me to tell my Braille teacher. To borrow words from Whitney Houston’s song, “I believe children are our future, teach them well and let them lead the way.” Give them the tools so they can believe in themselves and fight for what they need. But, I hope you can also let them know that if they have fallen into silence, that you will be there to help them talk again and not because you feel obligated to but because you genuinely care about the future they can have if they have a positive attitude, proper training, and the chance to succeed in the classroom and in life.

Saturday, November 5, 2011

hands off please

I'm standing in line at the bus stop, and everyone has gotten off. I use the tip of my cane to lightly touch the person in front of me, so I can tell when it is time to move forward. Suddenly, someone squeezes their hand hard around my upper arm and propels me forward. I tell her "I'm fine thank you, yet she does not let go. I wiggle my arm signaling that I am uncomfortable, and she continues to hold.
While I sometimes ask for help with directions somewhere or other tasks, I want it to be on my terms, and grabbing me is not the way to be helpful.
First of all, I am not comfortable with a lot of people touching me, particularly random people I don’t know. Most people keep traditional American personal space manners, but when a person has a disability, that respectful boundary seems to disappear. Second, grabbing my hand/wrist/arm is sometimes physically painful and unbalancing. Some days, I am dizzy or my ankle and/or hip is locking, so grabbing me unexpectedly throws off my already unsteady balance. With that being said, if I am about to fall down a 10-foot manhole or something heavy is falling towards my head, than grabbing me to move me out of the way of danger would be greatly appreciated.
A better way, if you see a disabled person and want to help, is to ask “do you need help.” If the person says, yes, you can ask him or her the best way that you can assist. If the person says no, continue with whatever it was that you were doing, and please don’t feel offended with the no response.

Tuesday, May 17, 2011

be thankful and shut up

In all of the communities where I find myself belonging, there is a theme of gratefulness and silence.
First, people with disabilities should be grateful for everything. If I refuse assistance from someone and am with able-bodied friends, some say I should be thankful for their kindness. Well, I'm not. If I say I do not want or need assistance, I expect the person to back off and say ok, not continue to grab my arm, push me, insist I can't do it by myself. I'd be grateful if able-bodied rules about personal space applied to me. There is also being grateful for services and access. At the beginning of my freshman year, well a week before it started, I put in a request for a reader for my French book and workbook. Since I had filled out accomodations forms with a reader as a possible accomodation, I didn't think it would be a problem. I went in to DSS my first week to see when I could have my reader, and the secretary happily hands me tapes. I ask her what these are, and she says, the first chapter of your French book and workbook. Me (in my mind) what? This is *not* what I meant by a reader. I tell her I thought I was going to have a reader. She says, "there is a reader on the tapes. He read the books and recorded them." I gave them back to her and explained that a reader is someone who will sit with me and read the book, spell words, describe photos, ETC. She said, "but they're already done." I told her that the tapes would not be helpful and I would like a reader. She proceeds to say they've never done that before, and the other blind students liked the tapes. I'm not all blind students. French is a language I've only had for a semester, and I need someone to spell new words and tell me which accent marks go on the letters. In this put upon tone, she says "i'll see what I can do." Three weeks later, they finally found a reader for me. Thank God the professor was understanding and gave me an extention because of accessibility issues. By that time, I had four chapters of workbook and lab work to do. Any time after that when I needed a reader, I found the person before the class started or the first couple days of class and sent them to DSS to fill out the paperwork to work for me.
Another area where I see the grateful attitude is adoption. I'm not bashing all adoptive parents; there are many awesome ones who are empathetic and do great work with their kids and the community. But there are many others who think adoption is the best thing and first moms and adoptees should share the same happy clappy emotions. Well that's not true for me and other adoptees. I started asking questions about Paraguay when I was in junior high; my mother says why do you want to know that stuff for, it's borring. She doesn't know anything about Latin America and has no desire to learn. I tell her I feel as if I'm missing culture and stuff and the feelings are dismissed because she says, "you're white and live in our family." I am allowed to have these feelings and questions, and they should not be invalidated because she is happy with everything. Then, there is adoption in conversations. It comes up with friends and strangers alike. I always say, there are many issues to be considered in adoption. I think they all look at me with surprise or something because they say, "huh? What issues?" There is whether people want open or closed adoptions. With domestic ones, that is a possibility. However, in international adoption, that is another whole kettle of fish. There are so many corrupt agencies who find children on the streets or take them from families and relatives who want them. There is so much money and agencies who are looking out for themselves and the children. there are often not records and a family history. I do not have a birth certificate, medical history, or anything from my time in Paraguay. It makes things complicated when I need to give official documents, like getting state Id and stuff. In the conversations, people are usually either I didn't think of that, or but you got adopted and don't live there anymore so be happy about it and don't worry about adoption issues.
But that is not who I am. I have always cared about justice and equality, and being a sociology major strengthened that part of me. Sometimes fighting for my rights is tiring, and it would be nice just to curl up in a ball and not think of them. However, I won't stop fighting for myself. I owe it to myself to make sure I have the access I need, not the access someone else thinks I need, to the materials and services that will allow me to be successful. Maybe the next student will not have as difficult a time because of something I said. I do it for my students, especially the children, because I want them to see that they do not have to settle just because someone offers a crumb of accommodation. I will not shut up about adoption because the system needs to change. I'm new to adoption advocacy, but I want to help in any way I can.

Sunday, May 1, 2011

selecting my spoons

Here is another post for blogging against disablism day.
Christine's spoons theory basically says that you start the day out with a certain number of spoons, choices energy, and everything else that goes into functioning. Unlike healthy, able-bodied people, it's about making choices of how to accomplish everything. I am totally blind, have mild scoliosis and joint pain, and have depression. The depression manifests itself as inability to concentrate, little motivation to do anything ensomnia and overall tiredness. Healthy people tell me just go and do it; it's no big deal. My response is always, if i could think myself emotional, energetic, and able to do whatever I want, I would do it in a second.
Here are some choices for the day.
First of all, do I want to get up; the answer to this one is always yes, even if it is only to feed and relieve my guide dog. Next is the choice to go to class; currently it's nearing the end of the semester, and I have to go to class to turn in papers, get final notes, and take exams. Do I want to take my cane, which could be painful depending if my muscles are stiff and my joints don't want to move as easily as they should, or do I want to take my guide dog, who has lately not been guiding well. Do I want to take the long way to class or take the shortcut which gives me an extra five minutes? If I am feeling disoriented, it has just snowed, there is noise and a lot of people around, I sometimes take the long way because it is a straight line and a right turn two blocks from the bus stop. If I have managed to sleep for more than four hours and have had water in the morning, I am more likely to take the zig-zag path across the quad and won't be confused by campus life. The second decision for the day is do I want to get lunch on campus, and if so, where? Sometimes I am just too exhausted by 1:30 that I just head straight to the bus to go to my apartment, even though it is not good for my health or concentration to skip a meal. If I decide to eat on campus, I usually end up at the pizza shop because it has only one line for ordering and checkout, unlike everywhere else that has food; this limits me to unhealthy pizza, strombolis, or wraps, but if i eat at all, it's a good sign. The other place I might choose is the husky lounge; this has sandwiches, grilled food, smoothies, entres, vegetables, and to-go food like apples and bananas. I just can't deal with all the people some days; I start panicking about it an hour or so before I have to go there. I sometimes feel dizzy and I have to keep asking people where the line is and if I am at the end of whatever line I want. Once I get my food from there, I have to find which, out of four registers, is open today, and I sometimes get lost in the place. Also, Dee is sometimes distracted by food on the ground and college students who think it is funny to throw things at her or anyone who wants to approach and ask invasive questions about my blindness or my dog or share info about some disabled person or their pet who died last month or last year. Once I get home with my food, I go to work; I help blind children and adults learn to read Braille, use technology, or learn daily activities like how to cook, tie their shoes, or use the phone. Most days it is children, who usually take the rest of my patience and energy. By the time I get home, do I want to eat dinner? Going to campus to get food is almost always a no; that is time waiting for the bus, a 10-minute ride to campus, at least a 10-minute walk to food, dealing with all the people, and the walk and bus back to the apartment. Since I was tired earlier and went to work, I didn't have time to find someone to take me grocery shopping, so I barely have food in the apartment. I pop in a frozen pizza or ramen noodles, more unhealthy chemically-laden food, or I place an order for delivery. Next is homework. I usually can't concentrate for more than a half hour at a time, which is exacerbated if I do not like the text of the books or research I am reading. It takes me at least an hour to write a page, and when I have to rescan articles, find all of my audio bookmarks, and figure out how to organize the info, I'm exhausted again. This leaves me no energy or time to socialize, which makes the depression worse since I've isolated myself from other people. My thoughts are racing like a hampster on a wheel, which means I get 5.5 hours of sleep on a good night and less than four on a bad one. The cycle of selecting which spoons I can give up starts all over again the next day, and able-bodied neurotypical classmates and friends wonder why some days I choose to sleep on the weekends and only leave to relieve and walk Dee.

Saturday, April 30, 2011

Unsent Thank yous, getting it right

Ablism can be defined as discriminating against or being prejudiced towards anyone with a visible or invisible disability. This can be shown from the words, such as crazy or lame, to the actions such as excluding someone from a social event or emotional and physical abuse. I'm sure many of the Blogging Against Disablism Day writers will have several posts about ablist language and actions, but that's not what I want to write about here. It is often so easy as a blind person to notice and remember all the times people have been rude, invaded my personal space, distracted my guide dog, denied us access, or didn't give me a chance once they realized I was blind and associated that with lack of ability and intelligence. However, there have been several people, especially in education, who gave me an opportunity with expectations that I would succeed.

Dear Mrs. Lowe:
Thank you for being the first person to encourage my dreams of journalism. You not only saw my potential to write articles, but you assigned me to be the copy editor for the yearbook when I had no previous experience. This was my first time in a leadership position, where I learned the importance of speaking up to others as well as many of the rules for line, structural, and content editing. There were no problems; everyone gave me the work on disks, so the content was immediately accessible.

Dear Dr. Brasch:
Thank you for teaching me much about all aspects of journalism. I learned how to come up with more and more story ideas, even when I thought I was exhausted. When my story draft wasn't exactly what you wanted you made me go back and fix it to your specifications, even if it took six times to do it. You showed me how to promote the magazine in everything from baking and selling cookies to making balloons and painting with children at the local fair. You made me go to local businesses and get ads and distribute magazines, especially to places I've never been before. You made me copy editor and later a senior editor/main fact checker in charge of proofing all articles for accuracy. You told me I was going to lecture in front of your class of 250 students because I would be able to do a good job of discussing disability in the media and social justice. You came down hard on me when I missed deadlines and wasn't giving it my best because you knew I was capable of more than that. Thank you for allowing me to be a part of a team that had nothing to do with blindness.

Dear people on the study abroad trip to Guatemala,
Thank you for welcoming me as just another volunteer without the awkward, uncomfortable silence that so often greets me. On that trip, I learned to paint road lines, brick walls, and the ceiling of the medical clinic even though it terrified me to be so high up on a ladder. I went through the Mayan ruins, to the outdoor markets, and learned to make tortillas. After we went horseback riding up the mountain to see a volcano, thank you for helping me balance; after I dismounted, I was having severe hip pain because of my scoliosis and you helped me to walk the rest of the way to the lava without making a big deal.

Dear Dr. Podeschi,
Thank you for all the extra work you put into making the coding analysis program accessible. After having negative experiences with professors, especially one that semester who said I shouldn't bother him and he wasn't going to help me and should ask another student for computer assistance I was pleasantly shocked with your patience and creative solutions. It is one of the most visual-based programs that I have seen, and using a macro program to write computer scripts using keystrokes was a wonderful idea. You didn't have to spend at least 4 hours with the initial setup of Atlas TI and an additional 4 or five hours fixing all the bugs and crashes each time a new technical issue arose. Also, thanks for all the research project articles and suggestions for improving my independent study.

Dear Michael Collins,
Thank you for making intro to theater such a memorable and fun class. It was one of the best ones I've taken during my college career, and I loved your endless stories and the non-powerpoint way you lectured. I usually need to ask for accomodations, but you automatically gave me exams on a flash drive and emailed me any documents, ahead of time, that I would need for class that day. Finally, thank you for taking the initiative to auditorially describe the settings, costume, and actions in the plays and films we watched. I didn't even have to ask, you just came to sit near me and started talking about everything as if it were the most natural action in the world.

Sincerely,
Martha, an appreciative student