Caught in the act!

Be careful ... you never know when Dave Hingsburger might be watching!

"Oh, God, I'm going to read about this in your blog aren't I. Oh, God."

Hilarious!

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.

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.

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.

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.

College Challenges

“Christine” is a fun-loving, self-motivated sophomore at a major state university located a few hours from her home. She candidly shared her transition-to-college experiences. In her senior year of high school, Christine searched for a college that had wheelchair accessible academic facilities and dormitories as well as strong, reliable support services.

For all students, heading off to college for the first time presents new challenges. For Christine, one of those challenges was hiring, meeting, and adjusting to caregivers other than her parents. Several weeks before school started, her university's Office of Disability Support Services gave Christine a list of townspeople interested in employment as a personal assistant. Christine interviewed applicants over the telephone, and, sight unseen, hired those she thought best qualified. On the first day of school, after her parents helped her get settled in her dorm room, one of her newly hired personal assistants helped Christine with her nighttime needs.

Christine needs a personal assistant twice a day, in the morning to help her get out of bed and ready for the day and in the evening to help her get ready for bed. Throughout the day, Christine receives meal setup help from food service personnel, and help from friends with any tasks that she is unable to do independently. With the help of her professors, she hires classmates to take notes for her.

One who is inexperienced with service providers might think that once Christine hired a few personal assistants from the school's list, she was set for the school year. Nothing could be further from the truth. Dealing with all aspects of caregiver issues is a constant challenge. Christine says it's the biggest challenge of college life. Her personal assistants have not always been reliable; Christine was stuck in bed one morning when one assistant failed to show! A few of her assistants have been incompetent; some have treated her rudely or condescendingly. Christine has fired assistants. In addition, she has had to deal with a high turnover rate, teaching each new assistant how to meet her needs.

Now that Christine is in the middle of her second year at college, she has found that she prefers finding her personal assistants from among her fellow college students rather than from the Office of Disability Support Services’ list of townspeople. She feels more capable of judging in advance whether the college students will work out work out because she knows them personally. Christine has been more successful at finding respectful, competent assistants from among her peers. To deal with turnover issues, Christine always a few backup assistants ready so that she can assured of being functional each and every day.

Some of Christine's personal assistants have been her friends. This situation requires some special attention. On the one hand, Christine likes having a friend as a personal assistant, because she has a trustworthy, respectful caregiver who knows her needs. On the other hand, Christine recognizes that there is a potential for a strain on the friendship. Christine openly discusses this risk with her friend, emphasizing that the friendship is more important than the assistant position.

Christine's transition to college has been successful. She loves being able to live independently and is enjoying college life. She has developed wonderful friendships. An observation that Christine made is that college students are better able than high school students to look past superficial differences to form genuine friendships.

Christine's long-term plans include a graduate degree in social work, with the goal of working in disability advocacy.