Telethons and Pity (Repost)

This is a reposting of last Labor Day Weekend's post on pity. the post is just as applicable this year, as is the blogswarm.

Today is Labor Day, and, to many people, that means it’s time for Jerry Lewis and the MDA Telethon. I had never watched the telethon, and this year I checked it out for the first time. I have to say, I didn’t watch much of it, and it was enough. I am not going to comment on the mission of the Muscular Dystrophy Association (MDA); I am not familiar it. However, I would like to comment on the destructiveness of pity.

1. Pity fosters negativity. The negative aspects of the condition are emphasized and magnified, rather then the positive aspects and enormous potential of the individual's life. Instead of focusing on what a person can do by embracing all their strengths and gifts, pity limits a person.

2. Pity promotes the view of charity rather than the view of inclusion. Charity for pity divides people into 2 groups, the “haves” and the “have nots”. The premise is that the person who “has” will help the person who “does not have,” because the “haves” feel sorry for the “have nots”, rather than because it is the morally appropriate action to do. Unlike pity, inclusion encourages respectful dialogue to discuss ways to adapt to the obstacles of society.

3. Charity often seems focused on making those that contribute to the charity feel warm-and-fuzzy-good about themselves. That is the wrong focus. An action should be taken because it is the right thing to do, because it is fair and just.

4. Although often without consciously recognizing it, the person who is pitied usually has to conform in some way to the giver’s expectations and stereotypes to receive the charity. For example, in extracurricular activities in school, it seems to me that children with disabilities often have to participate in the sport or activity that has the most willing coach or advisor, rather than in the activity that the child likes the best or has a natural affinity for.

5. Pity lowers an individual’s self-esteem. It’s hard to feel good about yourself, when you are seen as a drain and burden on others.

6. Pity towards people with disabilities gives society the false impression that disability and happiness cannot coexist. That isn’t necessarily true, and that simply serves to cause more pity.

7. Another problem with charity for pity is that it can give the impression that once the charitable act has been done, societal responsibilities are finished. A corporation that publicly writes a check to MDA is still obligated to provide an inclusive work environment with fair opportunities even though they likely won’t receive public recognition for those actions.

Check out Protest Pity, The Blog Against the Telethon, for an excellent collection of thought-provoking posts about the telethon from the point of view of people with disabilities.

"People with intellectual disabilities deserve only one r-word: Respect"

Thanks, Ruth for sharing this beautiful video from The ARC of Virginia and The ARC of Northern Virginia. It sums up the issues well.

Inclusive Theatre

Tonight I saw the musical Working at Dominican University. I love Studs Terkel's books, and this production was very enjoyable. What was particularly cool was that this musical was signed. One of the interpreters was an ensemble performer - she danced and signed- and the other was in the traditional American Sign Language role, a little off to the side of the stage interpreting what was spoken and sung. This is the first time I have ever been to a play or musical that was signed, and it was great to see it at my college!

There's one more performance tomorrow at 3pm. For anyone who lives in the Chicago area (Karen?), it would be a great way to spend the afternoon. Tickets are only $15. The show is about 1 1/2 hours long.

The logo above is from Working the Musical website.

Understanding the less common perspective: A Thanksgiving reflection

This semester in my English course, my classmates and I were asked to write an essay about education. I decided to write about my childhood educational experiences because I thought they needed to be heard. When my English teacher and my classmates read my rough drafts, they did not readily grasp the main points that I was making and they totally missed some of the subtler points. Granted, they were unpolished drafts, but the reality was that my childhood educational experience may have taken place on another planet for all that they could relate to it. I ended up making many changes to the paper, changing words and fleshing out concepts so that my classmates could better understand the school experiences that I and many other children with disabilities had. To focus on a more basic message I ended up leaving out some of the complexities, for example: juggling health needs and school; countercultural decisions that my parents and I made in an attempt to counter the mainstream paradigm; and my atypical high school choices.

My experience with this essay left me thinking. How do you best convey experiences of living with a disability that are so alien to so many people? Where do you start? How do you convey challenges that people have never even considered? (Kay and Ruth recently shared recent experiences that most people couldn’t even fathom.) How can people relate to you and support you when they are so unfamiliar with your experience? I realized after I wrote my paper how grateful I am to have the support of the blogging community, many of whom share personally their own journeys through different, unfamiliar, and exotic lands. I'm so grateful that I have people that know what I'm talking about and are not surprised when I bring up certain issues in my life. Psychologically, it's really helpful to realize that there are, in fact, a large number of people who have atypical life experiences and that we can and do support and encourage each other. This experience of trying to convey my world to people who could not easily envision it led me to an even greater appreciation for Amanda Baggs and her tireless efforts to share her perspective in a society that lives under such a different paradigm.

So on this Thanksgiving, I thank you fellow bloggers. I thank you for all you've taught me and all you've done to support me. I thank you for listening to my perspective and enriching me with yours. And I thank you readers for making the effort to understand my perspective.

Here’s the final version of my English essay:

“We hold these truths to be self evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among these rights are Life, Liberty, and the pursuit of Happiness.” Familiar words to all Americans; and within these words, most Americans see the value of education, believing that public education is a key component of the individual pursuit of “Happiness”, a full and rewarding life. And likely, most of us agree with Thomas Jefferson’s 1806 assertion in his 6th Annual Message that the country as well as the individual is improved when its citizens are educated, that the benefit of education is not just to the individual, but also to the entire society, which is strengthened and enriched by educated members.

One group of Americans left out of this fundamental right is children with medical conditions or learning differences. The current educational system is designed for the student who can sit at a desk for several hours at a time; learn visually from the written word; follow directions quickly, easily, and compliantly; and conform and cooperate with the demands of a system based on multiple choice testing as the means of assessing progress. The American educational system is a one-size-fits-all structure that doesn’t fit the large number of students that are unable conform to it.

So what happens to these children who don’t fit the system? The children who can’t sit still, the children who learn best from hearing rather than seeing? The children who have difficulty understanding directions? The children who can’t write for themselves? The children who learn best with movement and physical stimulation? The children who are slower or faster in learning a skill than their same-aged peers?

These children are disrespected and left along the wayside. They are labeled - “different”, “uncooperative”, “special”, “hyperactive”, “slow”, to name a few. Expectations for these children are lowered, dramatically lowered. In our society, there are two ways of educating children with learning differences: in a classroom exclusively for children with disabilities or within a classroom with same-aged peers. Because of the pervasive disrespect and low expectations for these children, neither setting is designed for success. Often the curriculum is weak, the support non-existent or poor, the staff undertrained, and the resulting social isolation is vast.

Having cerebral palsy, I was one of the children labeled “different”. I have traveled through a dark side of public education that may surprise, and would hopefully appall, many Americans. Over the last year, I have interviewed young adults with disabilities from many school systems who have shared similar dark educational journeys.

Ironically, my very first school experience was an ideal experience, a model for the education of young children. My parents had refused to let me, as a 3 year old preschooler, travel 1 ½ hours each way by bus to be isolated in a building that only had students with physical weaknesses like mine. They recognized that while my physical abilities were quite limited, my language skills, love of music, interest in books, and desire to learn were age appropriate. Luckily, a local preschool teacher invited me into her classroom for the second half of the schoolyear, while a neighbor physically lifted me and supported my full participation. Not until much later would my parents and I realize that this ideal educational experience based on high expectations, respect for me and my learning style, and full membership amongst my peers was a fortuitous rarity that would not be easily replicated in my grade school years.

In grade school, my parents pushed for me to be in a classroom with my same-aged peers, but like other children with disabilities in the regular classroom, it was a forced fit. The biggest hurdle that I faced every single day was the hurdle of low expectations. Many staff took one look at me and made assumptions that I couldn’t learn, that it would be a chore to teach me, that it didn’t really matter if I learned, and that I was not now nor ever going to be a contributing member of the classroom or society. I felt these low expectations when teachers didn’t expect me to have an answer and would not call on me in class, when an inaccessible location was chosen for a field trip and it was okay if I didn’t go, when it was acceptable that my schoolbook audiotapes were not available at the start of a unit, and when my large print copies were not ready on time.

My stories are echoed in the stories of the people I have interviewed. Whether in a disability classroom or a same-aged classroom, each person experienced the trauma of low expectations. Students in disability classrooms noted that academics were not considered a priority, that they did not have homework, and that their schoolday was full of wasted time. Students in the same-aged classroom recall the discomfort of the forced fit into that classroom – the medications to allow them to sit still, the assumptions that they were faking their need for extended time or personalized directions, having to learn math with worksheets rather than by handling concrete objects. A woman who is blind recounted the terror of never knowing when she would be hit by a basketball in gym class. (The sound of a basketball still makes her cringe some 20 years later.) Whatever their classroom, most can still replicate the baby-talk voices of staff members. Students who took the “special bus” recalled that no educator seemed to care that each day they would miss academic instruction due to a late arrival and early dismissal designed to make the bus driver’s schedule easier.

For many, a seismic manifestation of the disservice of low expectations came in the form of teachers’ assistants. Assistants to support students with disabilities in the classroom sounds, in theory, like a good idea. Reality often shows otherwise. Using a wheelchair, being unable to handwrite, and being a weak visual learner, I was assigned an assistant to support me throughout grade school. More often than not, this was a person who had no more than a high school education and was in this very low paying job temporarily until a better job came along. Typically, my assistant had little to no understanding of child development and placed no value on his or her own education. Yet, these people were placed in charge of my day-to-day learning, while the classroom teachers looked after the needs of the other 25 students. I had a few positive assistant experiences, but many more negative ones, including an assistant who was absent 50% of the time; an assistant who wrote “Abe” rather than “Abraham” in my dictated story about President Lincoln because she could not spell “Abraham” and did not think of using a dictionary or asking the teacher; an assistant who would take me with her while she socialized with the janitors; several assistants who did not know school policies or equipment; an assistant who forgot to put my seatbelt on, then tried to push my wheelchair forward down the stairs (fortunately stopped by the scream of my observing mother); assistants who brought their own troubles and stress to the workplace and my day; and an assistant who swore at me and abandoned me in the bathroom because he didn’t like my attitude.

Like me, others interviewed told of low expectations manifest through the revolving door of incapable and, occasionally, even abusive, assistants. A number of people recalled that recess was nothing more than a time for assistants to gather, students at their side, for a chatting break while all the other kids played. Former students spoke of the high absenteeism rate for assistants, and of assistants who yelled at and scolded them. One man shared that an assistant kissed him in the seclusion of an elevator.

When so many actions of the educational system send the message that you have little potential, it’s hard for a child not to internalize and fulfill those low expectations. The public educational system wreaks havoc on the feelings of self-worth of the child with a disability. Every person that I have interviewed speaks of childhood memories of intense isolation, deep rooted feelings of inferiority, and an assault on their self-esteem. For many, the scars take years to eradicate, and can resurface when confronted by constructive criticism, snide comments, a rude look, or any challenging situation. Changing from a “you can’t do that” mentality to an adult “I can do that” attitude requires great effort.

Children model adult behavior, and the plague of low expectations spreads to little ones without disabilities as well. These children have been exposed day after to day to a system that treats a group of their peers as inferior, and they naturally come to accept that perspective. In addition, if there is segregation of the two groups of students within the school, there is limited opportunity to get to know each other and break down the stereotypes. Children could have the opportunity to form friendships in extracurricular activities, but sadly this doesn’t happen very often. Children with disabilities are only able to partake in activities with leaders willing to accommodate their differences, which are not necessarily activities for which they have a natural affinity or a genuine interest.

Consequently, many children with disabilities never experience solid friendships with their able-bodied peers. By the teenage years, many schools aggravate this problem by setting up well-intentioned service opportunities for their able bodied students, pairing them with students with disabilities for social activities. What I have seen repeatedly is that the able-bodied student sees a short term charitable project, albeit a fun one, while the student with a disability, lacking experience with relationships, believes he or she has formed a real, lasting friendship. This disconnect often is never fully realized by either side, and down the road leads to confusion, hurt feelings, and sometimes hostility, exacerbating the divide between the two groups.

It can be seen, then, that the child with a disability loses out on academic instruction and therefore academic potential, self-esteem, and relationships. But, others suffer too. Able-bodied children lose the opportunity to be exposed to peers who have a different perspective on some life issues, and society loses the opportunity to fully experience the talents and contributions of this suppressed group of people.

The current system, defined by low expectations for students with disabilities doesn’t work. What is needed is an educational system that accepts all aspects of diversity, including diversity of ability. What is needed is a school system that truly respects each individual child and supports all children to become full members of a diverse society that benefits from the full education of each of its members. There is not some precise line dividing the ability from disability. Every child, and for that matter every person, has abilities along a continuum. In addition, each child has individual strengths and weaknesses. Priorities should be set so that not only can weaknesses be improved, but strengths, interests, and passions can flourish.

Class sizes need to be smaller, so that teachers can get to know each student and his or her unique needs. Lessons should be offered in many formats – visual, auditory, kinesthetic, creative role playing, tactile, and experiential. Each format needs to be considered to be of equal merit, deserving of high quality materials that are ready in a timely fashion. The ideal classroom would be reflective of the ideal society, having diversity represented among the staff as well as the children. Diversity of ability should be prized in teachers, as enriching the educational process and society. A teacher with a kinesthetic learning style, one who might have been labeled as uncooperative and wiggly in first grade, would be a valued member of a team with teachers of other learning styles.

This truly respectful environment would foster self-worth, confidence, and a joy and love of learning. In a school with respect for individuality and diversity of ability, natural peer relationships and friendships would develop without the barriers of artificial superiority or inferiority. Children would grow up to offer their self-confidence and varying talents to create a just, diverse society enriched as Jefferson imagined through the foundation of a strong public education system.

Telethons and Pity

Today is Labor Day, and, to many people, that means it’s time for Jerry Lewis and the MDA Telethon. I had never watched the telethon, and this year I checked it out for the first time. I have to say, I didn’t watch much of it, and it was enough. I am not going to comment on the mission of the Muscular Dystrophy Association (MDA); I am not familiar it. However, I would like to comment on the destructiveness of pity.

1. Pity fosters negativity. The negative aspects of the condition are emphasized and magnified, rather then the positive aspects and enormous potential of the individual's life. Instead of focusing on what a person can do by embracing all their strengths and gifts, pity limits a person.

2. Pity promotes the view of charity rather than the view of inclusion. Charity for pity divides people into 2 groups, the “haves” and the “have nots”. The premise is that the person who “has” will help the person who “does not have,” because the “haves” feel sorry for the “have nots”, rather than because it is the morally appropriate action to do. Unlike pity, inclusion encourages respectful dialogue to discuss ways to adapt to the obstacles of society.

3. Charity often seems focused on making those that contribute to the charity feel warm-and-fuzzy-good about themselves. That is the wrong focus. An action should be taken because it is the right thing to do, because it is fair and just.

4. Although often without consciously recognizing it, the person who is pitied usually has to conform in some way to the giver’s expectations and stereotypes to receive the charity. For example, in extracurricular activities in school, it seems to me that children with disabilities often have to participate in the sport or activity that has the most willing coach or advisor, rather than in the activity that the child likes the best or has a natural affinity for.

5. Pity lowers an individual’s self-esteem. It’s hard to feel good about yourself, when you are seen as a drain and burden on others.

6. Pity towards people with disabilities gives society the false impression that disability and happiness cannot coexist. That isn’t necessarily true, and that simply serves to cause more pity.

7. Another problem with charity for pity is that it can give the impression that once the charitable act has been done, societal responsibilities are finished. A corporation that publicly writes a check to MDA is still obligated to provide an inclusive work environment with fair opportunities even though they likely won’t receive public recognition for those actions.

Check out Protest Pity, The Blog Against the Telethon, for an excellent collection of thought-provoking posts about the telethon from the point of view of people with disabilities.

Kids Are Kids!

Thanks to Ruth and Connie for finding this interesting article about a recent study that concludes children with cerebral palsy are no less happy then their able bodied peers,

The study surveyed 500 8-12 year old children with cerebral palsy and found that while they participated in less activities then able bodied children their enjoyment of life was just as great.

Professor Alan Colver, of Newcastle University who conducted the study hit the nail on the head.” The change now needed concerns attitudes. Pity and sorrow should not be directed to disabled children because our findings indicate that they experience life as do non-disabled children. Maximum effort is needed to ensure their rights as citizens, rather than as disabled children, to participate in society as fully as other children."

Of course! Kids are kids. They just want to have a good time. Check out pictures of Moo, Ellie, Holland and Eden all having fun.

Let’s do what we can to not take happiness away from children through exclusion, pity, and lack of opportunity.

Discomfort at first sight

Ruth, from Wheelie Catholic and A Different Light, wrote D is for Discomfort - a post with her thoughts on an observation that my aide made on our recent trip to Costa Rica. My aide Ryan noticed people's initial response of discomfort to meeting me and my energy put into making them feel comfortable.

Ruth relates to my experiences. And as a person with an acquired impairment, I am guessing that she notices a huge difference in the "before" and "after" first encounters with people.

I have grown up with cerebral palsy, and I am used to people staring at me from a distance, people looking away from me as if they might "catch" what I have, people talking to my friends or family as if I'm not there, and people looking at me with pity and sadness. Even though I am used to it, it still makes me angry, and I get tired of all the energy I have to put into "proving" that I am a real person. Still, I try not to let it get to me.

Ruth has some good suggestions. If you are uncomfortable with people who look different than you, I hope you'll check out Ruth's post. I hope you'll find it helpful.

My Costa Rica experience: A slideshow and reflections

Free MySpace slideshows, photo and video editing at www.OneTrueMedia.com

• Family is a very important part of Costa Rican culture. Most of my host family’s relatives lived very close to each other, and nearly everyday members of the family would get together for dinner or coffee. Often, it would be a very large group. Family members on both my mom and dad’s sides of the family gathered regularly, seemed to know each other well, and had fun together at parties. And, there was always a reason to have a party, including having a visit from me!

• Ryan, my friend who came along on the trip to be my personal assistant, and I were treated like family. Eduardo, Marianela and their daughter Marypaz welcomed us with open arms. On our first night, they had relatives over to the house and ordered a pizza for us. Each morning we shared with the family a homemade breakfast including delicious Costa Rican coffee. Each evening, we shared in making and eating a Costa Rican dinner, we chatted, and we played games. One evening, Ryan and I came home around 8:30 in the evening after a very long day. Our host parents were waiting for us, wanting to hear about our day and share the social process of dinner-making with us.


• Costa Rica has the largest gap between the rich and poor of any country in Central America. Like in the United States, this could be seen in our drives throughout the country.


• I was struck by the lack of healthcare resources available to the people of Costa Rica. In the physical therapy department at one rehabilitation center, the physical therapy equipment and the all the patient beds were located in the same room. The hospital seemed to have only the necessary equipment. There were no extra amenities or “fluff” to make the hospital stay more enjoyable - no therapy wedges, no toys for children, no DVDs or books or magazines for adults, no paintings on the walls.

• In Costa Rica, people take their jobs very seriously and are proud to work hard and serve their customers. On my first night in Costa Rica, my taxi driver, spent two hours helping find the best way to get me comfortably in his taxi. At the end of the trip, one of our bus drivers wanted a picture with each of the delegates, saying, “You are such a special group, it’s a pleasure serving you.” Police officers were very helpful in helping us cross through busy San José traffic.


• At one center that we visited, some of the residents had been there for a long, long time. Some spoke of family that couldn’t or wouldn’t care for them. Some cried a lot, and others were very, very happy to have a visit from our group. Seeing people living in these sad circumstances was sobering and disconcerting. I realized how lucky I am to have a personal, family, financial, technological, and community resources that I have. We need to do better at taking care of each other in our world, and sharing our resources more equitably.


• I found it interesting to hear Ryan’s reflections on the experience. Ryan and I hadn't known each other that well prior to this trip, and this was our first time spending an extended period of time together. Ryan observed that many able bodied people in both the United States and Costa Rica seemed initially scared of me. They did not know what to say or how interact with me. However, once a conversation with started by me, they realized that we did indeed have commonalities. (I, of course, know and experience this fact everyday, but it was interesting to hear Ryan's take on it. I was reminded of Christie Gilson telling me that those of us with disabilities spend a lot of energy making other people feel comfortable with us.)

Ryan also came away from the experience with a profound respect for people with disabilities and their personal assistants. He had no idea how much time and energy it took to perform mundane, but necessary responsibilities. During the trip, he almost always had tasks to do. Once he finished one task he moved right on to the next one.


• All in all, I’ve had a powerful experience that continues to and will continue to impact my thoughts and life decisions. Thanks to all who have supported me.

Music on slideshow: Manu Chao, Me gustas tu

Reflections on Self-Love, Self-Worth, and Family

The 15th Disability Blog Carnival will be on the theme of family and disability. Able-bodied or disabled, all children learn their value from the people with whom they spend time.

From listening to the childhood reflections of others and from my own childhood experiences, I see that the young child with a disability is like a sponge, absorbing and internalizing the feelings and actions of family and caregivers. I've put together a composite of some of these reflections.

If I’m a little child I feel love and consequently, value when:

My mother's eyes, voice, and face light up upon seeing me, rather than becoming dark, dreary, and sad.

Even if I'm not able to verbally respond, my aunt talks to me using my name, rather than about me with impersonal pronouns as though I'm not there.

My grandfather spends time with me, telling stories rather than letting me sit alone in front of the television.

My uncle casually helps me get my jacket on so we can go the park, rather than making a big fuss like I'm slowing everyone else down.

My brother listens to me when I say, "you're treating me like a baby," and responds, "you're right, I'm sorry," rather than laughing at me or ridiculing me.

My grandmother enthusiastically greets me when I come to her house, rather than complaining about the work she had to do to accommodate my needs.

My father cleans up my drool or my dirty diaper with matter-of-fact simplicity, rather than shaming me about bodily functions over which I have little control.

My caregiver seeks to understand me when I ask a question, rather than becoming annoyed with me.

My stepmother holds me with a strong yet gentle touch making me feel safe and secure, rather than with a tentative hold leaving me to feel both dirty and frightened.

My young cousins follow the example of my inclusive adult relatives, finding ways to have fun with me, rather than giving up without even trying.

My godmother learns some sign language so she can communicate with me directly, rather than relying on my parents to be intermediaries.

My parents’ longtime friend rejoices in the fact that I exist, rather than talking about what a burden I must be.

My parents correct a neighbor who laments the hardship a disabled child must bring to their lives, and articulate my value, rather than list my needs and their fears.


The child's view of himself or herself is shaped by everyday life experiences and interactions. If a child with a disability feels loved, self-love and self-worth will follow.

Which Box?

We humans like to label, to stereotype, to box-in others to simplify our own lives, allowing us to avoid dealing with the complexity of each person. We delude ourselves into thinking that we know another person, when all we really know is the box that we created. Those of us with disabilities are boxed all the time - with labels such as “inspirational”, “tragic”, “brave”, “retard”, “cripple”, or "special". The labels, even the seemingly kind ones, serve to diminish who we are, limit our potential and our contributions, and take away our humanity.

Here’s a story of how someone put me in one box, then another box, and finally got rid of his box perspective.

Several years ago, we got a new choir director at my church. Tony was about the age that I am now, finishing up a bachelor’s degree in choral music at a nearby university. I had been singing in choirs at my church for about 8 years with the previous choir director. When Tony first came, he was overwhelmed by the enormity of the job. He had his hands full juggling his college demands and the full-time job of music director at a church where music plays a central role in liturgy. I imagine it was not easy seeing my wheelchair and cerebral palsy among the musicians. At first, Tony appeared very cold and distant to me, and I really didn’t feel like a part of the group any more. I didn’t feel wanted or respected. I knew Tony did not see me as a choir member, but instead saw me as a person who was in the way, a burden to the demands of his job.

I continued to sing, moving from the teen choir to the adult choir. Tony gradually became more comfortable with his role as music director and also with my place in the choir. We had many enjoyable conversations, and he got to know me as a person. He valued my contributions as a tenor in the choir, and little by little dismantled the box that he had put me in.

One Easter Sunday, it became apparent that Tony now had me in a new box. In the middle of mass, he spontaneously decided that the choir would sing in a different part of the church, a part that was not easily accessible to my wheelchair. Tony quickly directed the choir to follow him, and everyone but me, did. I stayed put, as I could see that the new location couldn't work for me. Tony started to conduct the choir for the song and saw that I was not there. His face registered “uh-oh!,” shock, and embarrassment. The choir sang the song, and everyone returned to their places.

Tony was intensely, humbly apologetic. He had forgotten that I use a wheelchair; he had seen me only as a singer. I had gone from one box to another box. I had gone from "disability" to "no disability", from "cerebral palsy" to "tenor". Different boxes, yes, but still boxes; boxes that simplified me as being only one thing and did a disservice to me.

A few years have passed since that Easter Sunday, and Tony and I have a great working relationship and friendship. He now seeks to understand all of me, asking me questions and getting to know me. Recently, he heard a guest speaker at our church naively stereotype people who use wheelchairs. He graciously offered to drive her back to the airport, with a mission to catch her ear on the subject of stereotyping people with disabilities. When he told me that story, I couldn’t help but smile. I have a lot of respect for Tony; it is not easy to stop putting people in boxes. I hope I can follow his example and unabashedly drop the boxes that I have that so limit the people I stereotype.

Description of picture: boxes stacked upon each other

Carnival Day!

Head on over to From Where I’m Sitting, and check out Disability Blog Carnival 12. The theme for this carnival is Disability and Culture. There are a lot of great posts that explore this topic from many different angles. Some posts explore the meaning and parts of disability culture while others look at society and cultural practices. You’ll find porcupines, James Bond, Cripopolis, and the television show, House MD, and much much more.

Andrea: "'Cyborg Cool' Versus 'Crip Pity'"

Andrea, from Andrea’s Buzzing About, writes a right-on and entertaining post on the silliness of our society’s attitudes. She notes the irony in how the same technology can viewed as “cool” for one person while at the same time distinctly uncool for another person. In our conspicuous consumption but disability-adverse culture, we want the world to see our brightly colored Bluetooth ear piece but not our sickly beige hearing aid earpiece.

Description of pictures: one picture shows a fancy bronze colored Nokia Bluetooth earpiece with an engraved design and the other picture shows five bland beige Siemens Phoenix hearing aids.

"Why Our Perspective and Presence As People with Disabilities Matters"

Ruth, from Wheelie Catholic, writes of society's need to better understand and respect the perspectives of people with disabilities. She says that this understanding and respect is essential to real inclusion.

I know from my educational experiences that a major hurdle is getting an able-bodied teacher or staff member to recognize that I have a perspective that is likely unfamiliar to him or her. Of course, recognizing that people with disabilities have unique perspectives isn't even remotely possible if respect for our humanity doesn't exist first.

Hope on the Carousel

Alex, who is a few years younger than me, and I were both in our church’s children’s choir for several years. Now, Alex is in the teen choir while I’m in the adult choir, so we only sing together at Christmas and Easter. Alex is a senior at a Chicago public high school and plans to major in music when he goes to college in the fall.

Alex has a lead role in his school musical, Carousel. He plays the tragic hero, Billy Bigelow. Last night, several members of our church, including me, went to see Alex in his play. Alex had been enthusiastically talking about the musical for weeks and I was excited to see him perform.

Whenever I go out, I can't help but notice accessibility and inclusion. I don’t mean to obsess, but there is so much exclusion in attitude, policy, and practice most everywhere, that it’s hard to miss. But last night was unique.

When we pulled into the parking lot, there were many handicapped parking spots right in front of the entrance. We proceeded through the power double doors. When one of the power buttons wasn't working, a stranger went off to tell the manager. The high school auditorium was a modest size and had multiple wheelchair seating choices. Even though I was the only audience member in a wheelchair, it was refreshing to see such an inclusive attitude towards the diversity of potential audiences.

I comfortably settled in to watch the show. Alex's beautiful, strong, baritone voice and fine acting ability wowed the entire audience. He was fabulous! The entire cast put on a wonderful show.

And I loved that no big deal was made of the fact that the actor who played the romantic, male lead, Mr. Snow, had a visible physical disability and used a power wheelchair. The actor had a strong tenor voice, was a fine actor and was fully included in the show. His character romanced the female lead quite convincingly.

Of course, I am not at all surprised that a person with a disability can sing, act, and play a romantic lead. What surprised me was that the director used the most capable actor for the part, even when that actor would not typically be thought of in our society as being able to portray such a character. What's more, to the audience, it appeared effortless and natural.

I think that it’s really neat that Alex never told me, “Hey, David – one of the leads in my play uses a wheelchair.” It wasn’t a big deal to Alex – he saw me as David and his fellow actor as Joel. He never thought it relevant that we both use a wheelchair.

I was also struck by the audience’s genuine appreciation for all the actors’ performances. No inspirational mumbo jumbo. No phoniness. No pity. All the performers deserved and received hearty applause.

(The only evidence that I was still on planet Earth came five minutes after the show ended. The audience was filing out of the auditorium. A lady came up to me and told me what a wonderful voice I had. It took me a moment to catch what she meant. She thought that an actor had jumped off the stage into the crowd all while changing skin color, hair color, body type, physical impairment, wheelchair brand, and costume, and was now in front of her exiting the auditorium.)

I came home feeling encouraged and hopeful. Here was an experience that fostered real inclusion. This school gave its students the opportunity to see one and other as fellow human beings, each capable of hard work, talent, and even romance. These young people are future leaders, health care providers, business owners, and caregivers. Some have or may develop disabilities. They have been given the foundation of seeing people as people.

Description of picture: colorful carousel horse

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.

REFLECTIONS
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".

BEAUTY
"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.

THE HIERARCHY
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.