World Language Survey

Mobility International USA, the organization with whom I traveled to Costa Rica, is conducting a survey to determine how people with disabilities learn a foreign language.

"National surveys show U.S. high school students with disabilities, while increasing in the numbers enrolled in foreign language courses, still lag behind their non-disabled peers in the percentages who study foreign languages. U.S. students with and without disabilities are close to equal in the percentages completing foreign language courses at the higher education level. However, the data does not explain what languages are being studied, how successful the learning experience is, and what are the barriers and benefits for people with disabilities at all ages. Are you a person with a disability from theUnited States who is interested in taking a survey about foreign language learning and disability? The National Clearinghouse on Disability and Exchange seeks your and other individuals with disabilities input and experiences.

Take a 10-minute Foreign Language survey online here:

I took the survey, and they ask questions about my language interests, how I study languages, and travel. It took about 5-10 minutes. Any help you can give MIUSA would be greatly appreciated. Thanks! For more info about the survey please go to MIUSA's newssite.

Costa Rica, anyone?

Last summer, I participated in an incredible program with Mobility International USA. (Here's my slideshow.) I joined several other young people interested in disability rights and traveled to Costa Rica - living with a host family, doing some volunteer work, visiting disability and tourist sites, meeting with Costa Rican disability activists, and sharing in a cross-cultural exchange. It was an intense, hard, wonderful, incredible experience. I met fascinating people and did things I'd never done before.

MIUSA is recruiting for this summer's trip. And, it's back to Costa Rica! If you or someone you know is 18 - 24 years old and interested in disability advocacy, be sure to apply. The deadline is March 28. All the details at the MIUSA website, including a great slideshow of our trip last summer.

Dave's Faves 1

School and health issues are keeping me out of advocating trouble. I’m not having as much time as I’d like to post my thoughts, but many other bloggers are writing great stuff, and there are always interesting things to be found in the news. So, welcome to the first “Dave’s Faves”, where I’ll be linking to some of those interesting finds.

Steve Kuusisto, dealing with a guide dog stress injury, hits on an issue that is all too common for people with disabilities. “I wonder sometimes if the able bodied public knows that people with disabilities have stress injuries that are the result of their accommodations. Wheelchair users have carpal tunnel syndrome; back aches, neck aches, profound tension headaches—all of these things are essentially the norm for PWDs." So true. I need my computer because I cannot handwrite, but I get neck pain from using my computer too much. It’s tough to figure out the right balance when the computer is a necessary part of my independence and yet causes me so much pain.

"This is best for you." Ruth eloquently writes about those simple, yet incredibly annoying words that people with disabilities hear from total strangers. “So far the winner is a secretary at a local DME provider who ‘decided’ which wheelchair was best for me in less than a minute. I suppose she had a chart in front of her which indicated the exact model to "prescribe" for a quadriplegic. When I brought up the issue of what medical folks thought I should have, she promptly replied ‘Oh no. The model I gave you is the one you need.’”

As people often presume incompetence in all areas when one is in a wheelchair, Bridget Houlihan offers great examples about "what it takes to simply be your best when your have a disability." I can relate to her experience of hoping a college education would encourage people to take her more seriously.

“Bah humbug.” In Goals schmoals, Terrible Palsy shares her feelings about school and therapy goals for her son. “Stick your goals where the sun don’t shine. Happiness is all that matters.” Right on!

Thanks to Ruth for noting this USA Today article about the rise in reporting of housing discrimination. I did not know that housing discrimination on the basis of disability was as prevalent as discrimination based on race.

Ever been in the hospital at night? I have. Billie, at Micropreemie Twins, shares the wonderful night’s sleep she and her daughter get while in the hospital. Not! It’s common knowledge that sleep is necessary for healing – someone needs to tell hospital personnel.

Disaboom is a new website hoping to become a resource for the disability community. Check it out.

Mobility International USA is looking for 15-17 year olds with and without disabilities to participate in a 21 day trip to Bahrain next summer.

Finally, Amanda, at Ballastexistenz, shares and analyzes the story of a boy who really was a hero in Kid Hero Saves a Teacher.

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

I'm back!

I'm resting and recuperating today from a wonderful and amazing trip.

This picture shows our group. The 3 gentlemen on the right side of the picture are Oscar, José Ángel, and Eduardo, Costa Rican disability activists and our hosts.

I'm posting my journal entries from earlier in the trip. I'll have more to say and pictures to post later. Thanks for all the good wishes!

sábado, 30 de junio

This was our last full day with our host families. In the morning our host mother, Marinella, took us to see a large church in their neighborhood. At 1 pm, we all joined the rest of the MIUSA group along with their host families , for an afternoon fiesta filled with food, socializing, singing, and dancing. Each host family was recognized and thanked by the each of us and also by the group. My host family, Toty (dad), Marinella (mom), and Marypaz (7 year old daughter), gave a short speech saying how he enjoyed having Ryan and me stay with them.

In the late afternoon, Minor, our taxi driver, picked Ryan and me up and we followed Toti, Marinella, and Maripas to Toti's sister and brother-in-law's house in the town of Tivas. We joined a family gathering of about 50 people, singing karaoke, dining, and having fun. It was very special.

The warmth and graciousness of my host family is incredible. Most of the people we have encountered here in Costa Rica possess this same warmth.

miércoles, 4 de julio

I've just returned from a relaxing e days at Carara National Park. We did lots of swimming and hiking and saw all sorts of wildlife. We went on a nicely accessible paved trail. We also went on a trail through the jungle and saw white-faced monkeys, McCaws, toads, iguanas lizards, and insects. There were a few rocky spots along the trail, but with teamwork, we got through them.

We also did some swimming at 2 beaches at the park. I floated in the water and found it warm, refreshing, and relaxing.

Carara is a beautiful national park, and they are looking to become more accessible. They asked for our suggestions. I appreciate this attitude and hope more people with disabilities will come to Carara.

This trip has gone by so fast. I can't believe it's coming to an end. I've met some wonderful people here and made what I hope will be lasting friendships.

Update from June 29

viernes

Today we went to the University of Costa Rica and learned about their disability service program. They have 158 students with disabilities on campus. I was very impressed with the accessibility on campus; nearly every building had a ramp. I was also impressed with how the support service seemed to want to support many types of students disabilities. They seemed very on top of things.

Later, my host family hosted a barbeque. I got to meet other host families and socialize. The things that really stand out for me is al the families' overwhelming warmth and hospitality. I love my Costa Rican host family. I will miss them very much when I leave. Tomorrow is my last day with them as we will be departing for Parque Nacional Carara. (I don't know if I'll have any internet access.)

My trip ends Thursday. I can't believe it's going so fast.

Update from June 28

jueves
Today we went to Volcan Poas National Park, which was very green and vibrant. It was raining and cloudy, so unfortunately when we reached the top, we could only see a little bit of the crater of the volcano.

We also drove through some of rural Costa Rica, and it was sunny then. Many of the houses had goats, cows, sheep, or other animals. There were many small markets along the way, selling fresh fruits and groceries.

Reflections on health care and attitudes in general

martes

Today we visited the hospital again. A few things that stood out:

-The smallness of hospital rooms
There is not much space in some wings of the hospital. I thought about how hard it would be to have so little space.

-Lack of resources and equipment
They have only the necessary equipment. No extra helpful things. No balls or wedges in physical therapy room. No warming blankets in the recovery room. They had only the necessities, none of the "luxuries" that we have in our hospitals.

-The respect the hospital has toward people with disabilities.

For the first time, I saw a doctor who has a visible disability. Dr. Federico Montero, who is a quadriplegic, holds a high-ranking position in the hospital. His opinion is obviously respected and valued. I've personally never seen a doctor in the U.S. who publicly shows his or her disability. Dr. Montero has done a lot. He has spent three years in Switzerland, working on a project for the World Health Organization and is also a disability rights activist. Yesterday, he gave a long talk about how society's attitude is the problem, and how medical professionals generally don't respect their patients with disabilities.

There are also able-bodied professionals in the hospital who work to promote disability rights.

It is so good to see people with disabilities being respected here in Costa Rica. This respect has been a common theme in Costa Rica. An obvious example is the contrast between the taxi challenge here versus in Houston last week. In Houston we experienced repeated rudeness, not wanting to take my chair in an accessible cab if it required any adjustment to their usual way of doing things, an astonishing apathetic attitude about just not showing up for a scheduled appointment, little concern for my safety, and on and on. In San Jose the other day, our cab driver Minor waited and problem-solved helpfully with us for two hours without a single complaint.

Costa Rica may not have the accommodations of the U.S., but their attitude is more advanced.

Updates from June 24 & 25

domingo

Today, Ryan and I had a very relaxing day with our host family. We first went to a lush and beautiful national park, and saw many types of animals, including deer, birds, and butterflies. Seeing and hearing all the animals was very relaxing and peaceful.

When we returned home, members of our host family's extended family joined us. We played games and chatted. They are a close family and welcomed Ryan and me as part of their family. I am amazed at how kind and welcoming Costa Ricans are.

lunes

Today we went to a government funded rehabilitation center in San Jose.

We learned a lot about the history of the center and its commitment to caring for people with disabilities. The hospital doesn't have the fanciest equipment, but it makes do. We took a tour of the different units and saw a wing where those who have operations and need physical therapy stay. (This area brought back many memories for me.)

Costa Rica has the biggest gap between the rich and the poor in all of Central America. The disability rights activists' goal is to make the hospital accessible to all people, rich and poor. The main theme of the day was that the problems lie with society's inability to accommodate the needs of people.

Update from June 23

sábado

Today we went to two museums - The Museum of Jade and The Museum of Gold, where we learned about some of the indigenous tribes of Costa Rica. It was very interesting learning about the tribes.

Ryan and a couple of the others helped me navigate through the many obstacles in our path.

Ryan and I did not get a chance to take a picture of the potholes just yet, but when we do, we will show them to you. Some of them are enormous. It was very challenging terrain for my wheelchair, but with the help of Ryan and some of the other group members, I managed to do fine.

Ryan and I are now in the bedroom of our host family's house. My host family has a seven year old daughter who loves to draw pictures. Tonight she drew one of Ryan and me. It's been an absolutely surprising, overwhelming, and wonderful experience.

Update from June 22

viernes

The wheelchair would not fit in to the taxi easily. It took Ryan and I some problem solving. Annie, the personal assistant and sister of one of our group leaders, and Minor, a taxi driver spent two hours with us, translating and thinking through how to fit into the taxi. Finally we figured out a way to make it work.

Today I met my host family. They are incredibly kind. The mother's sister, who lives next door, came over to welcome us with the primary family. My host dad is a quadriplegic. My host parents have a seven year old daughter. I was overwhelmed by my host family's desire to make Ryan and me feel welcome. They are warm and beautiful people. And I look forward to getting to know them in the coming days ahead. They said they'd been hosting people with disabilities from MIUSA for 15 years.

Pictures and A Petition

From mom: Some pictures I received in my email.


I think this is the group going from the San Jose airport to the hostel.


This is one of the group leaders, herself an MIUSA alumna, having fun with the group.


David and one of the ASL interpreters - I believe they are entering Hostel Bekuo.


David also requests a link to the FRIDA petition to ask the American Medical Association to set up a Disability Advisory Committee. He hopes you'll sign the petition, so that the voices of those with disabilities can be formally heard by the medical profession.

And, for those in the Chicago area, David hopes you'll participate in the rally sponsored by FRIDA, Not Dead Yet and ADAPT to encourage the AMA to set up the Disability Advisory Committee. Here are the details:

Where: Chicago Hilton, 720 S. Michigan
When: Sunday, June 24, 2007
Time: 11:30 am to 3:30 pm

Costa Rica!

Thursday, June 21

We had an exciting and tiring day traveling to Costa Rica. We got up very early to get ready for our flight. Wheelchair accessible cabs were supposed to meet us at our Houston hotel at 6:15 am, but none of the vehicles that arrived had handicap access. After much wrangling, the group finally all left the hotel about 7:45 am. (My mom, Ryan, and I had had similar challenges with an accessible ride in Houston on Tuesday.) We departed from Houston at about 11:20 am, and arrived in San Jose in the early afternoon.

Costa Rica is very beautiful and very green. All the service people we have encountered have been very friendly and helpful.

After arrival we rode on a Costa Rican bus and arrived at Hostel Bekuo. I'm looking forward to tomorrow when we can meet our host family. In the meantime, time to rest and unpack.

(Sorry - not successful at this time in sending pictures)

Orientation today

Tonight we had a long orientation in Houston with our MIUSA group. The group of 12 delegates is a diverse one – ethnically and disability diverse and from throughout the United States. We’ll also travel with 2 group leaders, one who also uses a power wheelchair, and 2 ASL interpreters, and my personal assistant and one other personal assistant.

We played some ice breaker games and got to know each other a little bit. We talked about our feelings as we embark on this trip, each person’s goals, assistance each person might need, our agenda in Costa Rica, first aid, Costa Rican culture, and learned a little about living with a host family in Costa Rica.

Tomorrow is an early day as we catch a morning flight to San Jose.

Hasta la vista!

Off to Houston tomorrow!

Yesterday, my church community blessed me and my friend and newly drafted personal assistant, Ryan, as we prepare to embark on MIUSA's Youth Leadership and Cross-Cultural Perspectives on Disability Rights Exchange Program. It's wonderful to truly feel their support.


And, I must say, I've been surprised that, unlike Christie, I haven't heard any naysayers about my going on this trip - a person with major physical and health impairments going off without his parents. Hooray!


Thanks again for the kind comments and words of support. I appreciate them.

Description of picture, which is a little dark and not too sharp - With Ryan to my right, we are near the altar and surrounded by a large group of family and friends as we are blessed. People have their hands on us or outstretched over us.

Preparing for the Youth Leadership and Cross-Cultural Perspectives on Disability Rights Program

I'm having very busy week getting ready for my adventure to Costa Rica. I am making a list of all my needs so that Ryan, my personal assistant, can know my needs and feel comfortable with them. Although I have known Ryan for many years, this will be his first time working with me as my personal assistant. And, this will be my first time having an assistant other than my parents for an extended period of time.

I've been filling out a lot of paperwork from Mobility International. One aspect of the paperwork has been a very thorough assessment of my needs. MIUSA has a questionnaire with eight categories of disability (including an "other" category). Each category has its own questionnaire with highly specific and appropriate questions for each category of disability. In my years in the school system, I've never seen such an on target questionnaire.

I've also had a good experience working with the MIUSA staff. They seem prepared, flexible, and willing to work with me so that we can be creative problem solvers for the new situations that we will encounter.

I'll be traveling with 11 other 18-24 year olds who seem like very interesting people. I look for to meeting them and sharing this great experience with them.

Here's what the itinerary looks like:
Day One: Orientation in Houston
Day Two: Fly to Costa Rica. Spanish language and sign language lessons. Stay in youth hostel.
Day Three: More language lessons and group activities. Meet and stay with host family.
Day Four: Breakfast with host family. Language lessons. Explore San Jose. Dinner with host family.
Day Five: Free day with host family.
Day Six: Tour of rehabilitation center. Workshops. Dinner with host family.
Day Seven: Adaptive sports day. Dinner with host family.
Day Eight: Visit disability organizations. Dinner with host family.
Day Nine: Excursion to Volcan Poas. Community service activity. Dinner with host family.
Day Ten: Disability Rights Workshop. Visit University of Coast Rica. Dinner with host family.
Day Eleven: Free day with host family. Farewell fiesta with host families at Instituto Helen Keller.
Day Twelve: Travel to Parque Nacional Carara and stay in dormitory.
Day Thirteen: Trail restoration project and park discussion.
Day Fourteen: Trail restoration project and park discussion.
Day Fifteen: Travel to San Jose and stay in hostel.
Day Sixteen: Return to Houston with group, and then return home.

I plan on taking many pictures and sharing my experiences with my readers while I am in Costa Rica. Hopefully, I’ll have occasional internet access so you can follow me on my journey.

I'm going to Costa Rica!

You may remember that I was an alternate for Mobility International's 2007 US/Costa Rica: Youth Leadership and Cross-Cultural Perspectives on Disability Rights Exchange Program. I am so excited because I got a call that a spot opened up for me, and I'll be joining the group! I'll leave for Houston on June 19, then an orientation, then fly to Costa Rica for 16 days.

Lots to do to get ready on such short notice. I've been working on my neck pain and it is feeling better, but I'll be working for it to improve more over the next week.

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.

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

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.