Friday, December 22, 2006
Two of the most well-known Christmas stories are the classic Charles Dickens' tale, A Christmas Carol, and the more modern story, Rudolph the Red-Nosed Reindeer. A common theme in these stories is found in the societies' views of the characters Tiny Tim and Rudolph. Each of these two characters has a difference, a physical anomaly; each character is initially seen as pitiful, and, in the end, hailed as special and inspirational.
Many in the disability community have given thought-provoking, satirical and entertaining commentary on these symbolic characters. In Empowering Tiny Tim, Douglas Lathrop debates whether Tiny Tim is a pathetic cripple or really a crafty little con artist. He calls Tiny Tim a "stone cold manipulator". In A Crippled Christmas Carol, Tiny Tim embarks on a journey to Christmas 2005. In Ode to Scrooge, Steve Kuusisto, tells of the history of Charles Dickens’s Victorian England as well as sharing his perspective on the “Scrooges” of today.
Gimpy, The One-Horned Reindeer is an entertaining satire from Ouch! Magazine and Podcast, the irreverent disability magazine by the BBC (Check out their Merry Cripmas, too). In Games People Play, Andrea makes a dead-on analogy between the Rudolph story and the now famous teen with autism who was "allowed" to play basketball. In Rudolph the Red-Nosed Reindeer, the blogger asks gutsy questions, "What if it turned out that that Rudolph couldn't actually save the day? What if he had just been different but not special?"
Saturday, December 16, 2006
More on the currency issue.
Check out this week's Saturday Slumgullion by Blue from The Gimp Parade. She gives a comprehensive review of the issue of U.S. currency adjustments for people who have visual impairments. She covers multiple aspects and perspectives of the issue. I didn't know that more than half of people of working age who have visual impairments are unemployed. This is a thorough review and well worth a read.
Friday, December 15, 2006
Four days after our first snowfall of the season, I had a dentist appointment. The dental office is about a half mile from my house. I live in an urban area with sidewalks and curb cuts, and I should be able to get many places by myself. However, on that day I was appalled and disgusted by the impossibility of getting from one place to another. Many of the sidewalks, especially in front of businesses, did not have a cleared path wide enough for a wheelchair. And worse than the sidewalks, were the curb cuts, which were mounded high with snow and ice from the village’s snowplowing of the streets. Fortunately, my mom, who had accompanied me, worked to clear a safe path for me. We skipped going to the bookstore like we had planned, because it was just too much effort.
I live in a town that prides itself as being progressive. Yet, when I can't get to places like the dentist office, shopping, and our accessible train station, I will have trouble ever being independent. I need my town to come through for me.
And I know I am not alone. A recently published Los Angeles County Health Survey found that, "among persons with a physical or sensory disability, 1123 (84.7%) reported environmental barriers related to their disability." These barriers were found to interfere with health care, social activities, and quality of life. This survey seemed like it explored highly relevant issues, but I have to say they seem rather obvious to me.
Thursday, December 14, 2006
It's carnival day!
This carnival is Travel with a disability: the good, the bad, and the ugly. It is hosted by Steve and Connie Kuusisto at the Planet of the Blind. As they note, when you have a disability, traveling can be good, bad and ugly in the same day, or it can be all good or all ugly.
I look forward to reading the posts, and I hope you'll check them out, too. It's always enlightening to read what others are saying.
Wednesday, December 13, 2006
More on U.S. money....
Of the 180 countries that have paper currency, the United States is the only one that has bills not distinguishable by touch.
The Bush administration said today that it will appeal the November 28th decision made by Judge James Robertson requiring U.S. paper money be made accessible to people who are blind. Robertson said that the current currency discriminates against those who are visually impaired. The Treasury says that changing the current system would be too costly, too difficult, and is unnecessary.
However, according to the American Council of the Blind, the government has not conducted any feasibility studies to study and examine possible changes. The Council has been advocating for a change to the paper money system to better accommodate people with visual impairments since 1995. They have made proposals such as embossed marks on bills and cut patterns on the sides of bills - both would let one distinguish bills by touch. Another possibility is varying the sizes of different denominations. To help offset costs, the American Council of the Blind is willing to accept a gradual phase-in of changes as old currency is replaced.
The US Treasury claims that changes in our paper currency are not necessary because people who are blind can use credit cards and money readers. However, according to an NPR report, many people who are blind do not use these devices because they are too expensive. And, it is well-known that people with disabilities often struggle financially and may not have access to credit cards. It seems to me that the money readers are not all that handy and don't fit in one's wallet or pocket. People with visual impairments seem to devise their own methods of sorting bills, such as folding the different denominations in different ways, asking for help, or putting different denominations in different pockets, socks, etc.
It's been at least 12 years and two presidential administrations, since the American Council of the Blind has been advocating on this issue. Other countries have figured it out. Yet, the United States has not even had a feasibility study. We don't even want to take a real look at the issue!
Japanese bills with raised watermarks on the corners
Malaysian currency with raised geometric shapes
Euro has different sizes and colors for different denominations.
Dutch banknotes also have raised marks.
All pictures from NPR.
Sunday, December 10, 2006
Before I sent my trusty Permobil off to the wheelchair graveyard a few months ago, I found this travelogue secreted away under the cushion. It reads as follows:
Day 1... Today I took a few unexpected side trips and saw the inside of many airplanes. I missed David! He went to Jackson, Wyoming, but I went to Denver, Los Angeles, San Francisco, and back to Denver for the night. A whirlwind adventure, for sure! I still feel a little woozy and have some bumps and bruises from the mishaps and mishandlings. I wonder what he's up to in Jackson. Sure hope I’ll be with him tomorrow.
Day 2... Hooray! I was reunited with David. Frankly, I got pretty tired of touring airplanes and airports. It's nice to start the vacation. David was relieved that with a few adjustments and Band-Aids, my condition was acceptable to continue with the trip. I know I'll need some major surgery when we get home, but for now good times are ahead.
Day 3… Today, David and I checked out some wonderfully accessible walkways and saw Old Faithful Geyser. David said that watching the many magnificent geysers erupt was unforgettable. Talk about a steamy experience!
Day 4… More hiking along the miles and miles of accessible boardwalks. It seemed like we were on Mars as we passed by bubbling, stinky mud pots and fumaroles. David learned about Yellowstone's geothermal activity and features, while I couldn't help but notice how many other wheelchairs there were in the park.
Day 6... While driving through Yellowstone in a van rented from Wheelchair Getaways, we saw many wild animals including bison, moose, and elk. We found it amusing to sit in the van and watch the bison roll around in the dirt. These gigantic animals would also nonchalantly walk directly in front of our van, sauntering by like they owned all of Yellowstone National Park. The elk stayed mainly by the rivers; David and I could see them from a distance from the van. An anxious moose darted in front of our van, and then quickly hid behind some bushes. Yellowstone’s diverse wildlife is certainly a sight to behold!
Day 8… I was not with David today. I needed to rest my weary parts. In his manual chair, David went up to the summit of the 10450-foot Rendezvous Mountain, via an accessible ski lift. I heard the view was incredible - snowcapped mountains, lush green forests, cool breezes, and the invigorating smell of the earth.
Day 9… Not with David again. He took a scenic boat ride across Jenny Lake. Many hikers used the boat ride to get to the other side the lake to hike through Cascade Canyon. Unfortunately, there aren't many accessible trails in the Tetons, but the views of the mountains from the boat and from the road are quite grand.
Day 13… I'm on the plane. So far the flight has been relatively uneventful. We just landed. Good to be home.
Here come the baggage attendants to help me down the conveyor belt. Oh no, there's a drop ahead and they don't have a good hold on me…..
Epilogue from David: My Permobil wheelchair was fatally damaged from that final catastrophe. With some work, the airline did authorize a full replacement. I was without my specialized chair for several weeks, and still now am needing adjustments on the new chair. It is taking a long time to get both the function and the comfort adjustments correct for my needs. VERY frustrating! But, I refused to let the problems ruin a wonderful trip.
Friday, December 01, 2006
When I was little, I would eagerly look forward to my birthday, particularly my birthday parties. Whether it was playing freeze tag in a swimming pool, going to a Chicago Wolves ice hockey game, or playing basketball with a hoop that was lowered to my level, I had good times with my friends, playing games suited to my abilities and going to events that were wheelchair accessible. During my birthday parties, my differences didn't matter. I was just a boy having fun with his friends.
Thank you for the birthday wishes,
Wednesday, November 29, 2006
Ever wonder what it's like to go shopping and not be able to tell a $1 bill from a $5 bill from a $10 bill from a $20 bill??
In the U.S., all our bills feel the same, so if you are blind, you need to have your own system for differentiating your bills or be at the mercy of the clerk giving you your change.
I heard on NPR today that a federal judge ruled that our bills are discriminatory against people who are blind.
"Of the more than 180 countries that issue paper currency," Judge James Robertson wrote in his decision, "only the United States prints bills that are identical in size and color in all their denominations. Every other issuer includes at least some features that help the visually impaired."
Read or listen to the story here.
Thursday, November 23, 2006
Disability Blog Carnival #4 is up! Goldfish did a spectacular job putting together a fascinating variety of posts on the topic taking a different approach to things and the lessons learned about flexibility and adaptability. It's great - check it out!
Wednesday, November 22, 2006
Thanks to the bloggers. Thank you for sharing your honest, thought provoking, and powerful insights. I have learned so much from each of you, and I can’t tell you how much I appreciate the wisdom and perspectives you share.
A special thank you to the people I interview. It is a great privilege for me to listen to your personal stories. Thank you for sharing a part of yourself with me.
And finally, thank you to the readers, whether you have read one entry or my entire blog. Thank you for taking the time to read about my perspectives and the perspectives of the people I have interviewed. I really appreciate your comments and feedback.
All the best to you and your families,
Monday, November 20, 2006
The next Disability Blog Carnival will be hosted by Goldfish on Thursday, November 23. The theme for this carnival is "Different ways of going about things." I think this is a great theme, because we with disabilities learn something that everyone should know: you don't have to do something the way it's always been done.
I completed high school in six years. I studied two to four classes at a time making use of a variety of formats. Some classes, such as World History, English and Biology, I physically took at the school. Two afternoons a week, a tutor came to my house for one-on-one Spanish classes, allowing me to stretch out on the carpet and rest my body. Over the summers and during other “slow” times, my mom and I independently progressed through algebra and geometry. I completed lighter classes like health and consumer economics through correspondence courses. I took one semester of physics and one semester of chemistry online.
Why did I do things this way? How did this decision come about?
Through 14 years of raising triplets, each of us a unique individual, my parents had already learned to look at my needs and my goals as the first step in making this type of decision. We had already done elementary and junior high school in unique ways, so making careful decisions was nothing new to us.
Some goals for my high school years were: prepare for college by taking strong academic courses; continue with my singing and other hobbies, while exploring new interests; spend time with friends; strengthen my body with daily exercise; and let my body have the daily rest that it needs.
Our decision (actually, mainly my parents' decision in the early years) gave me the opportunity for success. I believe I am well prepared for college. Taking fewer classes at one time and spreading them over a longer number of years, allowed me to take some honors classes, including a philosophy class and Advanced Placement Spanish. I was able to complete math requirements, my most challenging subject area due to visual and conceptual difficulties, at my own pace and in a highly personalized way adapted to fit my learning style. An advantage of the online science classes was the opportunity to work in an interactive virtual lab. In the virtual lab, I got to weigh samples, fill test tubes, light a burner, and perform other tasks I am not physically able to do. (Unfortunately, the online chemistry class was highly disorganized and filled with errors, but that's another story.)
I continued my singing throughout high school. I really enjoyed taking voice lessons and singing at both my church and school. I sang in a few school musicals, but sadly and frustratingly, the school had difficulty accommodating my wheelchair, so I did not pursue this interest as much as I would have liked.
During high school, I had some fun times with friends, although like most students, I would have liked to have spent more time with them. The last two years were more challenging socially since my peers had already graduated.
When I would leave school after a partial day, both students and staff would frequently comment, "Oh, David! You're so lucky you get to go home." Little did they know, it was often difficult and painful for me to sit in my wheelchair for half a day, and I was going home to rest, recover, and do physical therapy exercises to strengthen my body.
My path through high school was an unconventional one. I still believe in my goals, but that didn't make life easy. I was juggling challenging academics, physical needs, hobbies, and a social life, while the obstacles of an inaccessible world, some people’s unsupportive attitudes, my pain, and my limited stamina often worked to sabotage my juggling act. At times, life was very stressful, and my time was always a precious resource.
My most difficult sacrifice was not graduating high school in four years with my peers. It was really tough watching my friends, many I had known for 12 years, start a new phase of their lives, all the while knowing that I would be returning to high school. So I wonder - was there any way that I could have met my goals while graduating in four years? I know I couldn't have taken a heavier academic load, and to cut my non-school interests, my social life, or my rest any further would have been unacceptable. So, I'm left wondering about the pull between my work on my body, which I did for several hours a day, versus graduating in four years. I don't know the answer to this question. Physical therapy has certainly improved my strength, stamina, and capabilities, and it has definitely reduced my pain. However, those benefits have come at a cost: the loss of time to meet my other goals and still graduate from high school in four years.
I am grateful to my parents for thinking “outside the box” and for teaching me how to make decisions. My parents have shown me some steps in how to make a decision: identify my values, priorities, and goals, then think of possible ways to make the goals happen. There are many tools in the toolbox to help make goals happen - brainstorming, seeing what others in a similar situation have done, and listening to what "experts" advise. It seems to me that in our society, many decisions are made for people with disabilities by simply doing what has always been done. Each of us needs to think for ourselves about our own individual goals, and then use our toolbox of tools to make the best decisions.
Thursday, November 16, 2006
When Meredith was a little girl she was hit by a car.
“I ran into God when I was in my coma. I was in a coma for six long weeks. And,while I was in the coma, I had an out of body experience. Yeah, I died.”
"This was like … I wasn't a person … and I couldn't…see or feel my body.”
“I didn't have my body. It was my soul that did this journey.”
A calmness comes over Meredith as she carefully continues. Her voice becomes quiet as she describes the tunnel she is moving through.
“…imagine going up a circular tunnel that kind of curves to the left and then straightens out…it was like a tunnel curving and going up at the same time.”
At the top of the tunnel,
“…it's just the brightest whiteness ever, like Mr. Clean couldn't get a millionth of the way there,” Meredith chuckles.
“A golden bright light … said in a very deep man's voice, (she imitates a rich full bass voice) ‘Go back! It is not your turn.’”
“And that was my conversation with God,” Meredith concludes.
She talks about trying to grasp the meaning of this experience.
“In second grade in occupational therapy, I kept drawing these pictures of circles within circles within circles, like a nesting of circles, and at first I didn’t realize what I was drawing but then it eventually dawned on me, ‘Oh! So,that’s what that was!’”
Meredith also tells of a Sunday school experience,
“The teacher said, ‘no one knows what God looks like.’ And of course my little hand shot up, ‘I do! I do!’”
Over the years, Meredith has met several people who have also had near-death experiences. They describe a similar tunnel, light and experience with God. For Meredith, her near-death experience has been faith affirming.
Wednesday, November 08, 2006
Welcome to the third Disability Blog Carnival. Thanks to all who participated. Lots of fascinating and thought-provoking perspectives on spirituality are shared.
In her entry No Mistakes, Emma shares a poem of faith and trust by A. M. Overton while examining her un-straight path in life and her belief that everything happens for a reason. In Opening the Spirituality Can of Worms, Amanda from Ballastexistenz delves deeply into the complexity of her own spirituality. Amanda confronts society's spiritual stereotype that people with cognitive disabilities or autism have a simple, pure faith and are therefore closer to God. "This deprives everyone it is applied to of our true complexity, our true relationships to God, our true spirituality."
From A Quadriplegic's Prayer by Wheelie Catholic: "Let me not be ungrateful about what I do not have. Instead, help me recognize the rich abundance of all that you have given to me.” In grace, mercy and acceptance, Wheelie Catholic talks about her closeness to God.
In Dancing with Wheelchairs, Wheelchair Dancer discusses the relationship between her wheelchair and her body, indeed her very being. "I have a series of emotions that show up in my wheels. When I am angry, I push in a certain way. I can push reflectively, sadly, stressedly. I have feelings about using my chair; I have dealt with shame, stigma, fear."
Unfinished business at her friend's deathbed is connected to Blue’s mystical experience during her own serious illness in My Déjà Vu. Gordon examines his life after the return of his sight. "Nobody sees through his or her eyes really. I think that we experience reality through our eyes, but that's not the whole picture." In Close Your Eyes… And Do It! he believes, "I have stepped into a different reality".
"We were forever told, what a gorgeous child… the sad part of all of that people see is that they do not see the ‘beauty’ inside of Caitlin.” In The Beauty Inside, mom26children sees the beauty in her daughter and reflects on the lessons learned. In Beauty and a Wealth of Happiness in Imperfection, a mom fails to see the beauty in her child. Amanda gives a video response to another mother who can’t find beauty and value in her child. Likewise, Imfunnytoo shares the difficulty her family had seeing her beauty, in What they believed.
"I isolated my love like a muscle and focused on that alone." Susan Senator compares the discipline of belly dancing to the discipline of helping her beautiful son through a difficult time. In I Am, another mother, Emily Elizabeth, explores her identity. This piece by Dan Wilkins was written in 2000 about euthanasia, but I see it as being about a little boy seeing beauty in his dad.
THE SPIRITUALITY OF PITY
In The Daily News, Steve Kuusisto goes for a walk with his dog and meets a boy who underestimates him. Isabella Mori shares a discussion with a client named George, who struggles to live with society’s labels.
"I really don't require prayers,” Kuusisto replies politely in Spiritual Infringements. He describes those all too familiar experiences of “helpful” strangers who are filled with pity and who stubbornly insist on administering “healing”. With an analogy to Rudolph the Red Nosed Reindeer, Andrea gives her take on the "inspirational story" of a boy who is “allowed” to play in basketball game. “The fact that stories about such people are circulated as ABSOLUTELY AMAZING! and exceptional shows that pity is still stronger than acceptance."
Lady Bracknell gives a strong response to anyone who might feel sorry for her. Amanda of Ballastexistenz talks about insulting language, addressing those "well-meaning backhanded compliments (‘you don't look retarded’, ‘you're so smart for how you look’, etc.)"
Zephyr differentiates a real acknowledgment of her courage by a loved one from an artificial lumping together of all people with disabilities as “heroic”.
When is a threat not a threat? Apparently, Beck notes, when it is against a person with a disability. “Threatening disabled people is bad, ya’ll. Which is kind of news to me, because I thought we were all pretty much agreed that threatening people is bad.”
Benjamin Snow won a Film Your Issue Award for his 60 second film, Thumbs Down to Pity.
Here are three perspectives about the absurdities of not seeing people as unique complex individuals - Deciding who's legitimate; Exaggerating, Not Faking; The Disability Hierarchy. Why do we need to judge each other and rank our challenges?
INCLUSION … OR LACK THEREOF
One might think places of worship would understand inclusion. Sadly, that is often not the case. It’s hard to imagine a bishop ruling that a child with autism is only “simulating” receiving Communion. In If You Build It They Will Come, Awaketodream addresses the physical inaccessibility of mosques and churches, and wonders why leadership doesn't understand the field of dreams principle.
Kristina Chew (cannot seem to link to the specific story which is from Oct 28) reports on a conference and talks about exclusion and inclusion experiences in church. She also addresses the contributions that each person brings to a faith community, "Why ought a high-five not be thought of as acceptable as a sacramental response?"
Jeff McNair, a Christian youth minister, challenges his fellow ministers to be open to the positive changes a person with a cognitive disability brings to a youth group in Value Added.
In Reflecting on Spirituality and What I Believe In, Emma gives a comprehensive analysis of her spiritual experiences, from being told that she is in a wheelchair because of her sin, to her belief that she has a strong soul. Emma presents an interesting twist on the making-lemonade philosophy of life.
Wheelie Catholic’s What Is Access Versus Inclusion? is applicable to all places of worship.
"The entire disability community is under siege," writes Joel in Institutions or Death. He asks the questions: why is institutionalization so easily accepted? Why isn't there more emphasis on other alternatives?
In Disability As a Civil Rights Issue, from the Seattle Post-Intelligencer, Toby Olson writes "the general public is consistently, spectacularly wrong in nearly every truth it holds dear about the experience of living with a disability." That’s my experience!
I’ve enjoyed reading these interesting perspectives. Lots to explore and think about.
The next Carnival will be held by Diary of a Goldfish on November 23.
Wednesday, November 01, 2006
Meredith is an upbeat, positive, energetic person, proud of who she is and insistent I use her real name. Meredith has many interests and passions. She is a committed volunteer for the Starlight Foundation, an organization that grants wishes for children with serious illnesses; she is active in her church; and she is a mentor for teenage women with disabilities at the Rehabilitation Institute of Chicago. Meredith enjoys riding her recumbent bike around town, playing with her animals, and listening to books on tape. Currently, she's in the middle of Edgar Rice Burroughs’s Tarzan. Majoring in Elementary Education and minoring in English, Meredith plans to pursue graduate studies in Special Education and hopes to teach young children in a fully-inclusive classroom.
Meredith has been an active member of the Illinois Youth with Disabilities Leadership Summit for the past eight years. In this annual conference, participants learn about disability history, advocacy, creative problem solving, and reflect on living a full life with a disability. In her first year at the Youth Summit, as a teenage participant, Meredith recalls proclaiming, “I am not a disabled person; I am a differently-abled person". Meredith was surprised by her leader’s response, “No, you are a person who is differently-abled”.
That statement profoundly resonated with Meredith. It just made sense in a way she hadn’t considered. Meredith told me, “I am a person with a brain injury, not a brain injury with a person - that sounds like a computer!”
Look for more stories from Meredith in future posts....
Thursday, October 26, 2006
The 3rd Disability Blog Carnival will be here on Thursday, November 9. Entries are due Monday, November 6. The November 9 theme for the carnival is spirituality, though all stories relating to disability are welcome.
By spirituality, I mean how have your experiences living with disability shaped you spiritually? I'm defining spirituality very broadly, not necessarily religious or nonreligious - thoughts on God, humanity, love, relationships, beauty, the value of a life, meanings and purposes of life, etc., etc., etc.
Have your experiences with disability increased your connection with God? How does suffering and pain coexist with a belief in God? Are you welcome and respected at your place of worship? Are accommodations appropriate? How could they be better?
Have your experiences led you to doubt God's existence? How so? Is there a source of life’s meaning and value?
How have vulnerabilities and challenges in the disability minority shaped your philosophy of life? It seems to me living with disability encourages one to see a connection with and compassion for other oppressed or struggling minorities as well as a deep connection with humanity in general. Agree? Disagree?
What is beauty?
It seems to me people with disabilities are less afraid to ask deep questions, less likely to just accept societal attitudes, ways and traditions. Sometimes we’re forced to ask questions because of the choices we make on a regular basis. Sometimes we ask questions because we are not satisfied with society's answers and excuses. Sometimes we simply see the absurdities of our world.
All viewpoints are welcome, and I look forward to exploring this issue with you. Send submissions to the carnival site or to my e-mail. Deadline Monday, November 6.
The 2nd Disability Blog Carnival can be found at The Gimp Parade . This carnival is a collection of writings about "The Cure". Blue, the author of The Gimp Parade, shares her perspective and wonderings about a cure in this very interesting entry two weeks ago. I hope you'll check out both links!
Monday, October 23, 2006
My first interviewee, “Ashley,” discussed her perspective on a cure for her learning disability. Ashley said she would only accept a cure if it were on her terms. What society calls rigidity and stubbornness, Ashley calls discipline and focus. From her challenges, Ashley has learned patience and perseverance. She feels aspects of her learning disability have helped her become skilled at math, science, martial arts, and fitness. Ashley wonders if a one-size-fits-all cure of her learning disability could rid her of some of her very best qualities.
Many people who have made valuable contributions in society are thought to have had learning disabilities. Would Leonardo da Vinci, Pablo Picasso, Albert Einstein, and Winston Churchill have wished there had been a cure? What about Jay Leno and Robin Williams? Would these and other people with learning disabilities share the same concerns about a cure as Ashley? Would the unique talents and gifts of these scientific and creative individuals be lost if their disabilities were cured?
I wonder how Franklin Delano Roosevelt would have been a different leader had he not had the perspective and skills learned from dealing with polio. How would Stevie Wonder and Ray Charles be different musicians if they were sighted? How would Beethoven's 9th Symphony be different if he had not lost his hearing?
These are interesting questions to think about. We, as a society, are quick to point out the negatives of a person's disability; with a little effort, strengths can be seen too. Disability is a natural part of human diversity and should be respected and treasured.
This is a piece of artwork I like. It’s called Ramp Minds, by Dan Wilkins at The nth Degree.
The Label Jars picture comes from The Center on Human Policy
Thursday, October 19, 2006
I interviewed “Brian”, a gentle man with a very quick wit. Brian told a story that highlights the issue of control. I think this is an issue that is often faced by people with disabilities.
In his 24 years, Brian has needed 37 surgeries to repair the life-sustaining shunt that was first placed in his brain as a baby. He said a shunt malfunction can occur at any time and requires immediate surgery for repair. Brian starts to realize his shunt is not working when he feels moodiness and lethargy. After a while he develops a severe headache, nausea, and a sensitivity to bright lights.
Brian must interrupt his life, head to the hospital, and have surgery. He is grateful to have a consistent primary surgeon for each surgery. However, Brian faces new resident doctors, fellow doctors, nurses and anesthesiologists each time. These healthcare providers play a pivotal role in the surgery’s outcome and Brian's comfort, yet they have no personal experience with his complex needs. It is a terrible combination: Brian’s shunt malfunction is unpredictable, he feels miserable, and he has changing healthcare providers. At one time, Brian intensely dreaded this experience.
With the help of his family and a psychologist, Brian realized he needed to gain control over this challenge. He thought of his needs during the surgical experience - dim lights in the operating room, IV anesthesia, extra warmth, and a calm, light mood, to name a few. Brian made a written list explaining these needs, which he keeps ready for hospitalizations. His instructions have been consistently followed by his healthcare providers. While Brian is not able to avoid the shunt repair surgery, he is able to maximize his control and make the experience as manageable as possible.
The issue of autonomy is huge one. Society is designed for those with able bodies. Buildings have stairs. Crosswalks have signs that only those with sharp vision can read. School programs, recreational activities, and community events often are one-size-fits-all. Health care providers learn textbook solutions to “problems", often overlooking the person. This societal design forces people who don't fit the cookie-cutter mold to be dependent on others to bridge the gap between society’s attitudes and our individualities. It is necessary to depend on a wide range of people - doctors, teachers, personal assistants, educational assistants, family, friends and neighbors every day. From eating, bathing and going to the bathroom; to be being pulled out of the classroom for therapy; to waiting for the special bus, people with disabilities depend on assistance for a variety of things. And when dependence comes in, autonomy and control go out.
Even under the best of circumstances - a willing, respectful, capable helper and a clearly defined task - it is difficult to rely on other people's help. In a classroom lecture, my assistants took notes for me, writing down the material they thought important in the style the thought best. In addition to the loss of personal preference, there's also a loss of control over timing; I have to wait to go the bathroom, to get a snack, to get my laptop computer. And when the circumstances aren't the best - an unwilling, disrespectful, incapable, helper along with an ambiguous task - autonomy and control can really suffer.
This issue of control is faced every day. When to be assertive? When to be aggressive? When to go with the flow? When to just give in?
I admire Brian's courage and creativity taking back control in a very difficult situation. By identifying his needs and preferences and sharing them with those he was dependent on, he makes a major change in his life.
Saturday, October 14, 2006
I really appreciate you sharing your comments, insights, and experiences. If you are new to blogging and having trouble leaving a comment, here are some step by step directions that my mom wrote up.
Contrary to what it appears, you do NOT have to create a blog just to leave a comment.
1. Click on the comment link by the post on which you want to leave a comment.
2. Decide if you want to create a "blogger identity" so that you can regularly and quickly sign in with your name and password (no other information is required), or if you want to sign in "anonymous".
3. If you decide to create a blogger identity, then do that first, before you write your comment. Scroll down to "No Blogger account. Sign up here." You'll be linked to another page where you choose a user name (what you sign in with, no one else sees it); a password: a display name (this is what shows up when you write your comment); and your email address (by the way, they don't send SPAM). Then click "continue". Here's where the confusion comes in - the next page is for setting up a blog, which you don't have to do. Just close the window, reenter the blog, and now you can leave a comment. Each time you return to this blog or any blog, you write your comment, sign in on the same page with your user name and password, and that's it! A small hassle at first, but then you are set.
4. If you decide not to create a blogger identity, you can still leave a comment. Go ahead and write your comment, then click the "anonymous" circle. You can identify yourself in your comment box.
5. All comments require you to fill in the "word verification" box to reduce the chances of spam comments.
Hope this helps! Thanks again!
Posted by David at 11:08 AM
Thursday, October 12, 2006
Monday, October 09, 2006
I’ve been thinking about the connection between disability and friendship.
What makes a friend? What do I look for in a friendship? What do I like about my friends?
I look for people who like to think “outside the box” and challenge the status quo. Why do things the way they’ve always been done, just because they’ve always been done that way? People who want to make the world a better place excite me.
I enjoy people who make music. Musicians are fun people who know how to have a good time.
I enjoy watching sports and talking about sports with friends. Go Bears!
I enjoy exploring nature with friends – nothing like a hike in the woods on a fall day.
I look for people with a positive life attitude – a positive, realistic view of the world. Not sappy or phony – but a “taking the good with the bad” attitude and honestly realizing that there is so much good.
I look for people who like to learn and grow; people who are humble enough to recognize that they don’t know all the answers and who like to have challenging conversations.
I enjoy people who like to play. A game of poker with my buddies makes a fun Friday evening. And, I finally have a fantasy football team in first place!
I look for people who work hard to fulfill their passion.
I like people with a sense of humor. Laughing is fun. Ever listen to “Wait, Wait Don’t Tell Me?”
Notice that “disability” is not on my list. Some of my friends have disabilities, some don't. It's not a factor.
But much of society has it on their list.
Some people, both peers and adults, have avoided me because of my “outside” – perhaps my drooling, being in a wheelchair, limited use of my hands. Others, perhaps deluding themselves into thinking they were “open-minded”, talked down to me or were my “friend” only when convenient for them.
A visible disability presents superficial “differences”. But, it’s the inside qualities that matter in real friendships. We can share so much in common with each other, but we need to get to know what’s on the inside to find out. Seeing a person simply as his or her disability is a roadblock to a real relationship, and, sadly, both people end up missing out.
Saturday, September 30, 2006
This entry is my reflection on my first interview.
In this blog, I will NEVER reveal the identities of my interviewees. The names I use will always be fictitious. However, the issues discussed here will be real issues from real lives.
"Ashley” is an articulate, thoughtful, hardworking college student who has a learning disability. She shared her thoughts on some of her elementary school experiences.
Ashley remembers the school environment as overwhelming and chaotic. Ashley recalls being terrified to go to school and feeling tremendous relief when it was time to go home.
One of Ashley’s biggest fears in first grade was getting her name on the board. Getting your name on the board meant that you were a “bad girl”. To Ashley, her name would appear on the board at random times. Her name was on the board because she had her math book out; her name was on the board because she had her spelling book out; her name was on the board when she moved too slowly; her name was on the board when she moved too quickly. The consequences at school seemed arbitrary and scary. Ashley now realizes that she didn’t catch all the rules and their subtleties, making her feel inferior, incapable, and sad through much of elementary school.
Ashley said that high school was a better experience for her. Slowly, she started to realize that her weaknesses and challenges didn’t define her; that she was more than her disability. She started to discover her many strengths. When Ashley separated her challenges from her identity, she was able to find strategies to make school work for her. She met with teachers regularly to clarify expectations and rules; she developed the courage to ask for the accommodations that she needed, and she sought to follow her strengths, not dwelling on her weaknesses.
A few thoughts –
A child who seems to be misbehaving may just not understand the rules.
Everyone should be treated with dignity. A person’s identity is extraordinarily complex and cannot be simplified into a collection of strengths and weaknesses.
Something that teachers and parents could do for children with disabilities is to help them see that their needs do not define who they are.
The unique gifts that all children have to offer should be embraced.
Tuesday, September 19, 2006
The idea to interview people with disabilities took root about four years ago. At the time, I was feeling discouraged during a long recuperation from a difficult surgery. Lying around in pain gives one time to think.
I was reading some of the stories from Studs Terkel's book, Hope Dies Last. I was deeply moved by the candid stories that people, both ordinary and famous, told about finding hope in difficult situations. Kathy Kelly, a peace activist, shared her experiences with Voices in the Wilderness; Congressman Dennis Kucinich talked about an unpopular, yet courageous decision he made while mayor of Cleveland; Quinn Brisben, a retired Chicago high school teacher, reflected on his years working in the inner city.
Intrigued with people’s personal stories, I checked out Studs Terkel’s Working, from the library. A janitor, a film critic, a baseball player, a waitress, a farmer and more discussed openly the ups and downs and individual stories of their work-lives. It was so interesting to hear these personal stories.
Each of us has stories. Life is both ordinary and extraordinary, and as unique as each person. Why would a disability change that? Society has a tendency to simplify life with a disability as either “pitiful” or “inspirational”. Neither is true.
I decided that I would love to listen to the individual stories of people with disabilities, their personal reflections and thoughts. To hear the story first-hand is what I want to do. I wrote to Mr Terkel about my idea and his response overwhelmed me. I couldn’t believe it when I received both a letter and a phone call from this wise, generous person. He enthusiastically encouraged me to go forward with my project. When I asked for advice from his years of experience, Mr. Terkel said the key to a strong interview is to be a good listener. Thank you, Mr. Terkel, I’ll try my best.
Thursday, September 14, 2006
I was hoping to have started interviewing, but unfortunately, I have been delayed.
I had a wonderful vacation in Yellowstone - a National Park that is very accessible to those who use wheelchairs. The geysers are great, the waterfalls are spectacular, the people are friendly, and the wildlife is plentiful.
To my shock and dismay, my Permobil wheelchair was mishandled by the airline on the way out to Jackson, Wyoming and again, on the way home. And, when checked by the repair person, it was found to be irreparably damaged.
So, here I am, housebound, waiting for my new chair.
Am I frustrated? Of course! But, what else can I do? Some say patience comes to those who wait. And, as anyone with a physical disability appreciates, I have sure done a lot of waiting in my life - so by now, I should be very patient!