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

Carnival Day!

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

A blogger’s gratitude


Since it is the week of Thanksgiving here in the United States, I would like to acknowledge a few people for whom I am thankful.

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

Thinking outside the box

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

“I ran into God.”

More with Meredith...

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.”
Meredith struggles to find the right language to describe an experience that cannot easily be put into words. She continues with both excitement and awe to tell this story that happened 15 years ago, but she remembers like it were yesterday.
"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.

"How do the blind see beauty?"

More on beauty. . . .

In The Beauty Myth, recently published in the Washington Post, Steve Kuusisto shares his thoughts. Check it out!

Wednesday, November 08, 2006

Disability Blog Carnival #3

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.

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?

From Dan Wilkins, the Nth degreeOne 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!”

I agree.

Look for more stories from Meredith in future posts....