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.

Carnival Day!

Connie and Steve at Planet of the Blind will have you rolling in laughter with Carnival #17: Laughter, the Best Medicine. You can read about Marvel Comics new hero, Colin Bowel, Mistaken Identity and much more.

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.

Two must reads on the "Ashley Treatment"

Today I received links to two stories from FRIDA (Feminist Response in Disability Action). Since the American Medical Association's refusal to speak against the Ashley Treatment, FRIDA has been attempting to work with the AMA on the issue of human rights for people with disabilities. This coming weekend the AMA holds its annual meeting, and FRIDA will be there.

In "Doctors: Whose Side Are They On?" former Jerry Lewis poster child Mike Ervin explores why the medical community seems to have such a hard time seeing people with disabilities as people. He asks,

"How can so many of them attain so much education and remain so oblivious to the basic humanity of people with disabilities? Might there even be something about the detached manner in which they are educated that makes them more susceptible than most to disability bigotry?"

Mike asked Lisa Blumberg, a disability rights activist, her opinion and she said,

"I don't think doctors are instinctively more prejudiced than others about disability, but they are in a position to act on those prejudices since they have power over people's bodies. In addition, their view about life with a disability may be distorted because they see disabled people in settings where the focus is on what is 'wrong' with them and whether they can be 'cured.' It's a vicious cycle - doctors are infected by the prejudices of society, then doctors' prejudices become prejudicial practices which fuel the prejudices of society."

It's a must read. Very thought provoking.

FRIDA also sent the story, "The Other Story from a 'Pillow Angel': Been there. Done that. Preferred to grow." from Anne McDonald, a guest columnist for the Seattle Post Intelligencer. This is the story of a woman who has a story quite similar to that of Ashley X. She was abandoned and starved as a young child because of motor skills at the level of a 3 month old and a diagnosis of severe retardation. At age 18, she weighted 35 pounds and was 42 inches tall. She says, "

My life changed when I was offered a means of communication. At the age of 16, I was taught to spell by pointing to letters on an alphabet board. Two years later, I used spelling to instruct the lawyers who fought the habeas corpus action that enabled me to leave the institution in which I'd lived for 14 years."

Another must read. Check it out.

I wonder - how many people are there that are deemed worthless, but simply don't have a means to communicate? Of course, ability to communicate, level of cognitive ability don't matter on the issue of worth, because a person is a person. It's as simple as that - human rights are for all people.

Carnival Day!

The theme of Carnival #16 is "Borders", and it's up now over at Pilgrim Girl. Jana starts by sharing a recent experience in her own life.

"A few months ago I was engaging in an online debate with some TAB friends who argued that the routinized abortion of fetuses with disabilities or genetic abnormalities should be encouraged. As I expressed opposition to their ideas, my well-reasoned arguments were soon abandoned.
'Are you saying that I should have been aborted?" I asked. 'That society would be better off without me?'

One of them responded: 'Well, not you of course. I never think of you as disabled. You are just Jana.'"

Jana reflects on this experience and her realization of "just how flexible the borders of disability are--the categories of 'normal' and 'disabled' bending and flexing to both include and exclude."


I haven't had a chance yet to check out the many links, but it looks like there's a fascinating collection, organized by Jana into these categories: Borders in Public Spaces, Defining the Borders of Disability, and Physical Borders. I look forward to some very interesting reading!

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.

House Bill 1256 Update

House Bill 1256 has passed both Illinois houses of Congress. It now goes to the governor and will be signed into law. Thanks to everyone who called or e-mailed their state representatives and urged them to support this important bill. This bill will allow people with disabilities to earn up to $25,000 a year and still be eligible for Medicaid. For many people with disabilities who have pain or low stamina, part-time employment may be a possibility when full-time employment is not.

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.

Cool Links

Last week, I did not get to blogging, and I don't think I'll get much blogging done this week either. I've been having neck pain (boy, can pain really sap your energy) and a variety of health care and college-related appointments. So, here are some links that I think might be of interest.

Paul Crichton is a computer expert who works for BBC Ouch Magazine. Paul’s goal is to make websites more accessible to people with disabilities. Last week, Paul interviewed me and invited me to share my thoughts about the Internet.

Speaking of the UK, Gojo is a new website, designed to help people with disabilities in England improve the quality of transportation to enhance their independence. Gojo is looking for suggestions from the public on how to improve the transportation system.

Here is a three-minute video from the Disability Rights Commission of the United Kingdom that shows what the world might be like if people were discriminated against for being able bodied. Sister Edith, from Monastic Musings, has a great Blogging Against Disablism Day post about this video.




Here's a new blog from the University of California Los Angeles about Pathway, a program that provides educational, vocational, and social experiences for people with mental disabilities. Thanks to Ryn Tales, for connecting me to this exciting program that will open doors for many students.

Disability Stories and The Media

Yesterday, I heard on the radio two short pieces about young adults with disabilities.

The first, "Student with Cerebral Palsy to Graduate,” was on NPR's Morning Edition. A guest professor who had taught a class at the University of Delaware shared his experience of meeting a student and his mother.

After listening to this story, I felt compelled to write to NPR. I wrote,

“I am 21 years old and, like Sumner Spence, have cerebral palsy. I am so tired of the media’s portrayal of persons with disabilities and their families as either pitiful or inspirational. Both pity and inspiration are two sides of the same coin – the stereotype that people with disabilities are inferior beings; so either feel sorry for us or be inspired when we don’t match imposed boundaries and labels.

Why should a university professor be surprised that a university student would offer “sharp observations” and ask “smart questions?” Because of a wheelchair or weak hands? Not only do students with disabilities have experiences common to all students, we also have a wealth of perspectives shaped by living with our disabilities – perspectives that those who are able-bodied cannot possibly have, perspectives that can add to the diversity of intellectual discussions.”

This story was by no means as bad as those "feel good" sports stories where the kid with a disability is allowed to score a touchdown or make a basket. But I wrote the letter because people with disabilities cannot be respected as full members of humanity until society drops the inspiration/pity stereotype.

Last night, I heard the piece, "The Dog That Changed Her Owner's Life," on BBC Outlook. Hannah Baker, a 21-year-old woman who at one time could barely leave her house because of a seizure disorder, told how her life was changed by a service dog. I really liked how this interview was conducted, because Hannah shared her life experiences in her own words and the interviewer asked deep, thoughtful questions, seeking to understand the whole picture. Most importantly, there were no underlying messages of inferiority or pity or inspiration given to the listener. It was a fascinating story and the young woman’s disability was one part of it.

Disability Blog Carnival #15!

Kathryn from Ryn Tales has put together a rich assortment of posts that cover family and many other topics. I found some new blogs at this carnival, which is very exciting!

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.