Friday, July 27, 2007

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.

It's Carnival time!

Disability Carnival 19: Sex and Disability

Zephyr from Arthritic Young Thing has put together some wonderful posts about this topic. As she says, “Oftentimes, people with disabilities are perceived as asexual creatures who have no sexual needs or desires. Other people assume that no one could ever desire us sexually, or that we could ever have satisfying sex lives. Many of us can and do.”

Check it out!

Wednesday, July 25, 2007

Illinois Youth with Disabilities Leadership Summit

I just returned this evening from a disability conference in Springfield, Illinois. The Illinois Youth with Disabilities Leadership Summit is a great chance for young people from Illinois to learn about disability history, disability law, and disability advocacy, and a chance to meet and get to know other young people.
This was my first year going as a mentor, and I had a wonderful time.

This is an annual event - if you are a young person in Illinois who has a disability, check it out and consider it for next year!

Friday, July 20, 2007

My Costa Rica experience: A slideshow and reflections

• 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

Saturday, July 14, 2007

Disability Blog Carnival #18!

Head on over to Retired Waif and check out her carnival. She has the best title yet for a carnival, “The Disabled! We’re just like You!!!” She and the posts she has assembled do a fantastic job of illustrating this very important point.

P.S. I'll be posting more on my Costa Rica adventure soon.

Friday, July 06, 2007

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.