Sandbox Lessons

I was listening to the song, “You’ve Got to be Carefully Taught” from the musical South Pacific. The song asserts that children are not born racist, they must learn to be racist. I think that same truth applies to ableism. Children are not born believing that some differences make a person inferior; they have to be taught. It's easy to see how Jerry Lewis’s Muscular Dystrophy Telethon, inaccessible buildings, overt discrimination, or the common use of words such as "retard" or "cripple" teach ableism. It is more challenging to realize that even well-intentioned people, themselves products of the culture we live in, can inadvertently foster the ableist paradigm in children.

My mom remembers a telling story that took place on an ordinary day many years ago. My two sisters and I were about 4 years old at the time (we’re triplets) and were playing in our backyard sandbox. It was a warm, sunny summer afternoon. My sisters were running back and forth between the sandbox and the hose to get water for our sandcastles. I was lying on my stomach, as I often did, playing in the sand with my hands, my shovel, and my truck. We were laughing and having fun.

Unbeknownst to my sisters and me, a six year old boy who was visiting our next door neighbors was intently watching us through the chain link fence.

At some point, one of my sisters went near the fence, and the boy asked her, “Does he walk?”

My mom says she held her breath, ready to jump into the conversation and stand up for me. Ever the advocate, she would've said something sappy like, “He can’t walk, but he's really good at playing in the sand.”

Had my protective grandparents been around, one of them might have scolded the boy, “Hey! That’s a rude question!”

An educator or social worker, seeing a potential peer socialization experience for me, might have answered with a heavy, deliberate sigh, “No… he's not able to walk.” Then with forced enthusiasm, “Why don't you go play with him? It doesn't have to be very long, just a few minutes. You'll feel good helping the boy."

A healthcare provider, intending to minimize the importance of physical differences, might have lectured the boy on my condition of cerebral palsy, "The motor area of his brain was damaged because he was born too early. This damage causes him not to have good control of his arms and legs. Even though his body is different from our bodies, he's really just like us.”

The boy's dad, not wanting his son to be offensive or rude, might have pulled his son away from the fence, “Shhh…. Don't stare! Don't make him feel bad."

On the surface, these responses to the boy's question may seem appropriate. But imagine, if you will, the boy at the fence asking my sister a different question. Suppose he asked, "does he have red hair?"

"No, he doesn't, but he's really good at playing in the sand."

"Hey! That's a rude question!"

Heavy sigh, “No… he doesn't have red hair.” Forced enthusiasm, “Why don't you go play with him? It doesn't have to be very long, just a few minutes. You'll feel good helping the boy."

"He’s genetically heterozygous for the brown haired trait. Even though his body is different from our bodies, he's really just like us.”

“Shhh…. Don't stare! Don't make him feel bad."


So, how did the four year old's and six year old’s interaction play out that sunny summer day?

Not assuming any hidden meaning to the boy’s “Does he walk?", my sister simply said, "no."

The boy accepted her simple answer to his simple question. Then he moved on to his more important question, "Can I play? We could use my yellow dump truck to move the sand.”

The boy, and soon the neighbor kids, came over. The sand castles got bigger, the laughter louder. We all had a great time.


Be sure to check out the many other posts for Blogging Against Disablism Day. Thanks, Goldfish for organizing this event.

Tomorrow is Blogging Against Disablism Day

In One in Seven, Lady Bracknell writes an excellent lead-up post to Blogging Against Disablism Day which highlights the many aspects of diversity among people with disabilities.

“We are, without a shadow of a doubt, the most diverse minority group on the planet. We are everywhere you look, and yet you do not see us."

I'll have a post for tomorrow, and I hope you'll check out Diary of a Goldfish tomorrow for all the links.

(A few facts - In the U.K., Lady Bracknell says one in seven people had a disability; in the U.S., it's one in five. And, in the U.K., they use the term, "disablism”; in the US we use the term "ableism".)

Disability Blog Carnivals

In addition to the current carnival up at Ballastexistenz, there's info about Carnival #14, which will be at The Gimp Parade. The theme for that carnival will be "Firsts".

Kay says,

"The theme is "Firsts" and I want that to be interpreted as widely and variedly as possible. I want to encourage nondisabled bloggers and those that feel they don't qualify to be part of the disability community to participate asallies. I'll answer any questions about the theme, but it's just a jumping offpoint. Oh, and if you find a great post of someone else's that should be in thecarnival nominate it too."

I enjoy the carnivals, and I hope lots more bloggers will contribute. It's fun to read each other's ideas.

Carnival #13!

Carnival #13 is up at Ballastexistenz. Amanda has put together a collection of posts about boxes - literal boxes and the boxes of current event labelling and the confining stereotype boxes of daily life. Check it out!

Disappointing news and exciting news on the same day

Yesterday, I found out that I was chosen as an alternate for MIUSA’s Costa Rican Exchange. If a spot opens up, they'll call me. I’m disappointed. I would have loved to have gone. It sounds like a wonderful experience.

I had some good news yesterday, too. I won the Markeeta award, an award presented to an Illinois youth for social justice and disability advocacy. Thanks to Tara Dunning from the Statewide Independent Living Council and Meredith Hill for nominating me. My interest in advocacy took off when I attended the Illinois Youth with Disabilities Leadership Summit in 2003. I’ve since gone each summer as a participant and as a peer mentor. The Summit is a great way for young people with disabilities to meet each other, meet interesting adults, and learn about advocacy and leadership. If you know an Illinois youth who might be interested, applications for this year’s summit are due May 18.

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

Christie Gilson: An Agent for Change

Last week, I had the pleasure of interviewing Christie Gilson. I met Christie at her office in the Education Building at the University of Illinois. Christie is a warm, friendly person with an easy laugh, and was very open in sharing her thoughts and goals. She has a “go for it” outlook on life, teaching by example to follow one's dreams. This is the first of several entries about my interview with Christie.

Christie is a blind Doctoral Candidate in the Department of Special Education at the University of Illinois. She has an interest in the educational experiences of students with disabilities around the world, particularly in Asia. She said that Asian college students with disabilities are underrepresented in education research. Two years ago, Christie applied for a Fulbright scholarship to do her dissertation research with students at the University of Hong Kong. Her alternative plan was to interview international students with disabilities currently living in the U.S. about their schooling experiences.

Christie was thrilled to learn, several months later, that Fulbright had accepted her, and she began to plan the many details that would make for a successful Fulbright experience. She needed to set up all the necessary requirements for her dissertation research, and because she is blind, she had additional planning to do. Christie had previously lived in Germany with her ex-husband, but this would be her first time traveling alone for an extended period of time. She called Mobility International USA and the American Consulate to ask for travel and living advice. One of her hardest decisions was deciding whether to bring her elderly German Shepherd guide dog. In Hong Kong, dogs are uncommon, and guide dogs are never used. Also, because her dog is elderly, Christie wondered whether her dog would be anxious in such an unfamiliar place. In the end, Christie decided it would be best to leave her dog home and bring her white cane.

Excited to share her big news, Christie told family, friends, and coworkers about her Fulbright award. Most were excited and supportive, happy that Christie would be following her dream of going to Asia and respectful of Christie's ability to do the work to make this experience successful.

However, there was one person who doubted. A special education faculty member. The only place that Christie encountered questioning of her ability to function as a blind Fulbright scholar in Asia was from a special education faculty member.

We hope that special education teachers empower students with disabilities to believe in their capabilities and support them in finding the necessary resources to make their dreams happen. The irony is that many of us have consistently had the exact opposite experience. We've had special education teachers who cannot see beyond our disabilities. They box us in, seeing us as nothing more than a collection of "problems". Christie’s out to change special education. As a faculty member, teaching special education teachers, there will be no more boxes.


Description of picture: Christie and her German Shepherd guide dog, Jill

Blogging Against Disablism Day

Tuesday, May 1 will be the 2nd Blogging Against Disablism Day. (The U.K. uses the term "disablism"; we in the U.S. use the term "ableism".) The 1st Blogging Against Disablism Day happened last year on May 1, before I was blogging. 147 bloggers participated, blogging about a variety of issues from language to employment to education to cultural expectations and more. This year, there should be an even bigger turnout, and I encourage all bloggers - able-bodied or disabled - to participate. I especially hope that many of the parent bloggers will join in on this special day, so that we can all unite behind this important human rights issue.

You can get more information at Diary of a Goldfish, and also find all the details about participation there. Thanks, Goldfish for being such a great organizer.

"Tears of Shame and Embarrassment"

I had been searching for a news story about the United States and the UN Convention on the Rights of Persons with Disabilities, and had found next to nothing. Thanks to Steve Kuusisto, for connecting me to this link. Like me, Steve is outraged that the United States has thus far failed to sign this important convention. The US did not even send a representative to the UN signing ceremony!

John Lancaster, Executive Director of the National Council on Independent Living and President of the United States International Council on Disabilily, attended the treaty signing ceremon. Here's what he had to say:

"As I sat in the observers' area on the floor of the UN's General Assembly Hall, delegates from 80 nations and the European Community took their turn at the official signing table to commit their country to the human and civil rights of people with disabilities. At several points, my eyes welled with tears. They should have been tears of joy and pride as an American, as a citizen in the country that had created this world-wide movement for the rights and empowerment of people with disabilities. Instead, they were tears of shame and embarrassment..."

Andrew Imparto, President and CEO of the American Association of People with Disabilities, summarizes the importance of this UN Disability Convention:

"The UN Convention on the Rights of Persons with Disabilities provides the opportunity for tides of change across the globe. Because we've had 17 years to begin to see what a society can look like when people with disabilities enjoy broad civil rights protections, we must stay involved, sign, and continue to lead. If the U.S. is to remain a visionary leader on the rights of people with disabilities, it cannot stand by idly. Rather, with the same bipartisan enthusiasm as was seen in the signing of the ADA, the U.S. must sign and ratify the treaty and take a lead role in translating broad commitments into national action - to live up to our status as a world leader in the global fight for disability rights."

Over 80 countries, including Canada and Mexico, have signed this treaty supporting basic human rights for people with disabilities. The U.S. has not. Please sign this petition urging President Bush to sign the UN Convention on the Rights of Persons with Disabilities.

Description of pictures: one shows a sad eye, overflowing with a tear and the other one shows the UN flag

Next Carnival

Amanda, from Ballastexistenz, is hosting the next blog carnival. Her theme is “What Box?” Here’s her description of this fascinating theme:

“. . . there’s boxes we’re expected to fit into and conform to as disabled people. You could write about the box, you could write about not knowing there was a box, you could write about what happens when you step outside the box (if anyone even notices), just in general the theme is anything having to do with the box (the limited amount of stereotyped traits and experiences we’re “supposed to” have in a lot of people’s eyes) in its varying manifestations (including some that are impairment-specific, and some that are more general).”

Submissions are due by Monday, April 23, and can be sent here.

Top 10 Tips For Service Providers

I enjoy reading BBC Ouch's Top 10 lists, so I've made one of my own. (I'm also thinking that this might be a fun theme for a Blog Carnival.)

Top 10 Tips For Service Providers

1. Keep in mind that I am your client. Treat me and my needs with respect and care.

2. Show up on time; call if you’re going to be late. Respect the value of my time.

3. Look me in the eye. Talk to me, not to my parent or assistant.

4. Listen. Listen. Listen. Assumptions are the enemy. Let me explain my individual needs to you. Ask questions to clarify.

5. Offer your professional expertise.

6. Together, let's come up with possible solutions for my needs.

7. I don't expect you to know everything. When you don't know something, check with your colleagues, do some research and get back to me. Arrogance will not help us problem solve.

8. Stay focused on your job. Simple friendly pleasantries are fine; however, you were not hired to be my minister, my parent, or my buddy.

9. Follow through in a timely manner on any commitments you make. It's your job, and I'm counting on you.

10. Know that I am grateful for your services, expertise and a job well done.

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.

The Juggling Act

With my cerebral palsy, I have to be very conscious of setting priorities for my time and energy. I must plan my time very carefully because I have very limited stamina and activity causes painful spasms in my neck, shoulders, back, and legs. Last week, I sang with my choir for the Holy Week services. It was a wonderful, exhilarating experience that took all my physical energy. My blog got pushed down my priority list.

Also last week, I got called for an interview by Mobility International USA. I'll find out if I get accepted for the Costa Rica Disability Exchange Program on April 20. I'm keeping my fingers crossed, I hope I get accepted.

Description of picture: Five colored juggling balls in the air.

"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.

UN Disability Treaty Open for Signature Today

"The existing human rights system was meant to promote and protect the rights of persons with disabilities, but the existing standards and mechanisms have in fact failed to provide adequate protection to the specific cases of persons with disabilities. It is clearly time for the UN to remedy this shortcoming."

United Nations Human Rights Commissioner Louise Arbour

Today, in a ceremony at the United Nations, the U.N.’s Convention on Rights of Persons with Disabilities becomes open for signature. More than 70 countries are expected to ratify it.

The treaty was first adopted by the U.N. in December after three of years of negotiations, the fasted negotiated treaty ever. Representatives from more than 350 disability organizations worldwide attended the ceremony. Disability rights organizations from around the world came together to work for a treaty that would establish and fight for the rights of all people with disabilities.

Thomas Schindlmayr of the U.N. Department of Economic and Social Affairs summed up the treaty’s goal, “It’s not asking for persons with disabilities to have any new rights. It’s not asking for anything else that other people don’t enjoy already. It’s asking that persons with disabilities enjoy the same opportunities in society that everybody already enjoys.”

Thinking

Many thanks to Dream Mom who has nominated me for a Thinking Blogger Award. It is an honor to win this award from a fine blogger, and I really appreciate it. For those of you that have not checked out Dream Mom’s blog, I urge you to do so. Dream Mom writes very eloquently about her experiences raising Dear Son.

Dream Mom nominated me for this award because my blog was one of five blogs that made her think. In keeping with the tradition of the award, I now get to give this award to five blogs that make me think.

It was not an easy decision to decide which blogs to nominate. I've only been blogging for six months and have discovered many wonderful, thought provoking bloggers. Here are five of them.

1. At Diary of a Goldfish, Goldfish writes about the arts, culture and disability. She organized the first Blogging Against Disablism Day last year. This project had 147 contributions from all over the world.

Goldfish writes openly about many different life issues including disability. She looks at the issues with a thoughtful, reflective approach and always has an interesting perspective. She makes me think about my disability. I also enjoy learning about disability from a British perspective.

2.) Imfunnytoo at Midlife and Treachery (formerly Did I Miss Something also blogs about disability issues. She always has interesting observations on her life and issues affecting all of us. She is a wonderful writer with a very quick wit. She really helps me to look at life with a sense of humor.

3. Kathryn, at Ryn Tales, is the mother of four-year-old Ellie. Like Dream Mom, she writes about her experiences and thoughts about being the parent of a child who happens to have a disability. She looks at life issues from many angles, but mostly from the angle of a mother's love.

4.. I’ve learned so much about disability history, disability law, and disability rights from Penny Richards at Disability Studies. Penny's posts always teach me something new. For example, today Penny writes about reasonable housing accommodations. Penny started up the disability blog carnivals, a source of lots of thinking organized around themes.

5. I discovered Dave Hingsburger's blog, Chewing the Fat, just recently. Dave shares stories from his personal life and his work life. In his work, he conducts workshops with people with disabilities to teach boundaries, self-respect, and self advocacy. In The Good Girl, Dave shares the heart wrenching conversation with a young lady whose only goal in life is to be polite. In Conditions, Dave shares an experience with a young woman who has something to teach us all about self advocacy in relationships.

The rules and origin of the award can be found here. Bloggers that I nominated - you now choose five blogs that make you think. Be sure to include the link to the original site, as that is one of the rules, and choose blogs that has not been previously chosen.

Thanks again, Dream Mom, for nominating me.

Other blogs that make me think and have already won the Thinking Blogger Award are:
The Gimp Parade, Wheelie Catholic, Planet of the Blind, Wheelchair Dancer, and Ballastexistenz. There are lots more, too. Check out my blogroll for starters!

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

Dehumanization: Two powerful posts

Ruth, from Wheelie Catholic, writes a personal, real life post about the issues people with disabilities face with personal care attendants (and I would add often with other service providers, too.) She points out some of the ways disrespect can be manifested by caregivers in the lives of their clients. She also addresses the reluctance many people feel in bringing up these issues for fear of losing much needed service. One of the commenters who details neglectful care does not leave his/her name, because "I'm afraid."

Steve Kuusisto, at Planet of the Blind, sadly reflects on the disrespect of one group of people by another group of people when the issue of combining schools is raised in his town. He wearily speaks of the disdain of some members of the deaf community towards others with disabilities. The disability hierarchy rears its ugly head again.

Carnival #11

The disability blog carnival is up at All About Abilities and Disabilities. Alexander has put together a wonderful collection of links to stories, personal experiences and viewpoints on the many aspects of living independently.

Thanks to Kay for this picture of sculpture of Alison Lapper, and to Penny for this link to Marc Quinn's description of his work. The sculpture is on display in Trafalgar Square.