Carnival time!

A Few of Our Favorite Things, the 27th Disability Blog Carnival, is up at Andrea's Buzzing About. Here's what Andrea says, "We all have a number of little things that not only delight us in small ways, but also make life just so much more pleasant, and even help reduce our stress loads. These tend to fall into three categories: technology that enables us to do things, creature comforts, and human interaction. Got your cuppa? Cats and dogs settled down? Then let’s begin!"

I think I'll take a break from end of the semester papers and do just that!

Going to college: high-tech, low-tech, mom-tech

This week I started college at Dominican University in River Forest, Illinois. I'm excited and looking forward to a challenging (in the good sense!) and rewarding experience.

It's taken me a couple months to address my unique needs for college. I know from other experiences that planning makes a big difference. But, I also know that even with the best planning, unpleasant surprises and delays occur.

I have a few new things to help meet my various needs - some high-tech, some low-tech, and some designed with the tools of improvisation (like velcro, duct tape, items intended for other use) with which every person with a disability becomes all too familiar. Like other times in my life, many adaptations were designed by a creative genius, a.k.a. my mother, because there was no product that exactly worked for me.

Improvisation is a key aspect of living with a disability. Many times there are no products available to meet the individual’s specific purpose. You have to use your imagination and be creative. In the basement, my family has a box filled with Velcro, extra padding, spare parts, and a ready supply of duct tape.





The staff from the University of Illinois Assistive Technology Unit, who I started meeting with last March, designed and installed a small flip-out tray for my Kensington Trackball. They designed it so that I can store the little tray under my wheelchair tray, and independently move it into place when needed. They also designed my armrest to flip open to give my wrist added support while using the trackball. Now I can use my laptop computer while in my wheelchair! At this time, though, I still prefer to lie on the floor and use the computer, including my Dragon software, because then I can have all my papers on the floor to look at and sort through. And, I can roll around and change position as needed; my back doesn't get quite as sore.



I needed to get a cell phone for school. My parents spent a lot of time checking out the possibilities. Unfortunately, the UIC AT people didn't have advice on particular phones. Access World had an article on cell phones, and Planet Mobility had information on a 100% voice activated phone. Also, Jitterbug makes an easy to use cell phone. None of those exactly met my needs. We went to the Verizon store and picked a phone that seems like a good match for me - the GzOne phone. It's a rugged phone, made to stand up to shock (i.e. accidental dropping) and also water resistant. The buttons were not too hard to operate, and we programmed the numbers I'd use the most into speed dialing, so that I can call them with the press of one button. I decided against a Bluetooth headset because I am not able to get the headset on and off by myself. I also was not able to flip the phone open in its original form. We put the phone in a holster, and taped an old caribiner hook on the back. Now I had something I could grip with my left hand. Then my mom threaded a string through two washers and taped it all to the top of the phone. With my right hand, I can grab the string and flip open the phone.

My mom found two different baby stroller cup holders and set up one for my water bottle. The other one she rigged up to be attached to the first one and to hold my cell phone. She also attached a strap to the phone to make it easier to pull out of its cup holder.

I also bought the Day Cruiser bag from Wheelchair Gear, which is attached to the left side of my chair. With practice, I am getting the hang of opening the velcro flap and getting into the bag. We may have to remove the velcro. We attached a key chain holder to the zipper compartment with the hope that I can get the hang of using that compartment also.


I have also worked with the university to address my needs. This semester, I’m only taking two classes to make it easier to juggle academics, learn the ins and outs of addressing my needs, do physical therapy, and, of course, have time for fun stuff.

I emailed my professors over the summer to explain some of my needs. I ordered audio version of my textbooks from RFB&D and my local branch of the National Library Service for the Blind. And, I just got a subscription with Bookshare. (Even with all that planning, I still don't have all my books in an audio format!)

After the first day of class, I met with my professors to talk about what I needed to succeed in their classes. I was pleased that they were both receptive, and the meetings went well.

Each professor is helping me to find a classmate to be my notetaker. The classmate will make a copy of his or her notes for meand get paid $9 dollars an hour by the Department Of Rehabilitation Services Vocational Rehab (DORS). DORS has been a great support thus far - helping with some of my tuition and also with books and equipment costs.

I don't have the care of my personal needs (eating, bathrooming) figured out yet. With the light load I am taking this semester, I'll just address those needs at home for now.

I’m looking forward to the start of this college adventure. I don't think I'll be doing any interviews in the near future, but I still plan to continue blogging and sharing my two cents. Sorry, the blogosphere can’t get rid of me!

I Like Vacations!

I just returned from a beautiful trip to Wisconsin where I went bike riding on the Rails to Trails Elroy-Sparta bike trail, swam, played card games with my family, and went to a play.

I really look forward to going on a vacation. One reason is because it’s a welcome break from the everyday hassles of appointments, therapy, equipment, caregivers, etc, etc. Sometimes the everyday "stuff" of living with cerebral palsy can drive me crazy. It’s nice to get away, relax, explore new places, and hangout with my family. Of course, there are plenty of hassles with traveling, but I try not to dwell on them and try to enjoy the new adventures.


My parents bought this Duet bike 11 years ago. I love riding on it because I can feel the wind in my face and being on trails feels calm and peaceful. I cannot last too long on it because it doesn’t provide enough support. But that’s okay – it’s fun!


The Elroy-Sparta Bike Trail is neat
because it is fairly level (having been an old train track) and scenic. It also has many bridges that you cross and 3 long, dark, creepy tunnels that you walk your bike through.




The picture of me on the bench is when I was taking a lunch break at Gina’s Pies are Square. Yum!




I like to swim. We’ve figured out a way that works well for me. I wear a life jacket (it gives head support) and an inexpensive inner tube. When I’m not relaxing and floating on my back (like in this picture from a few years ago), I can paddle on my stomach and swim around. Moving in the water is so much easier for me than moving with gravity.



This card holder has seen me through many games of GO FISH, Old Maid, rummy, hearts, and poker. This trip we played Back Alley Bridge and Euchre.




Recently, my family has started taking in a play on some vacations. This time we went to the American Player’s Theatre in Spring Green, Wisconsin. It was fabulous!

I like vacations! Can't wait for the next one!

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

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.

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.

Independent Living

Last week, at my request, an occupational therapist and 2 rehabilitation engineers from the University of Illinois Chicago Assistive Technology Unit came to my house for an evaluation of a couple of my needs – a cell phone that I can use independently and a custom tray that will allow me to use my laptop, voice recognition software, and large Kensington trackball in my wheelchair. I had used the A.T. Unit’s services once before for a household adaptation and had had a very positive experience. Usually when I meet with service providers, I prepare myself for disappointment – disappointment in the attitude, capabilities, effort, and vision of the service provider, because that is the norm. But, this time, based on my past experience with A.T. Unit, I was feeling cautiously optimistic. I was not let down.

Here’s how the visit went…

First, they came on the same day that the said they would, and they even called to let me know that they were going to be a little late. Courteous. Respectful of the value of my time.

When they came in the door, they made eye contact with me, introduced themselves, and said hello to me. They were respectful to my mom, but recognized me as their client. More respect. Professionalism.

Then they asked me about my needs and my goals. More respect. They didn’t ask about my diagnosis or my “problems”; they weren’t relevant to the problem-solving. No pity, no shame, no getting off track.

The A.T. service providers never questioned the value of my goals; they accepted them as worthy, because I said they were important to me. Client respect.

The 3 providers were incredibly detailed in their evaluation of my needs – taking measurements and photographs, and asking specific questions to make a thorough assessment. They bounced creative ideas off of each other and off of me and my mom. Goal-oriented teamwork with a real effort to address my needs.

I am excitedly looking forward to see their solutions. To have my own cell phone would allow me control over my own phone calls. It would allow me to be out without a personal assistant, knowing that I could call for assistance if needed. The adapted tray will allow me to use my laptop computer set-up at college for note-talking, paper-writing and any other work that I need to do.

The Assistive Technology Unit at UIC is an example of an organization that is supportive of my life goals, supportive of my desire for independent living.

If I want to live independently, does that mean that I have to do everything for myself?

No. If self-sufficiency were the definition of independent living, then nobody lives independently these days. The pioneer families may have grown their own grain, milled their own flour, baked their own bread, sewed their own clothing, and built their own houses. But today, everyone I know lives interdependently within their community, both receiving from and contributing to the community's well-being. We have farmers, carpenters, artists, teachers, housekeepers, computer technicians, journalists, etc., each offering to the community and each receiving from the community.

I see myself living interdependently in my community. I know that I have talents to offer, and I know others have talents that I can benefit from. I hope I can put everything together, and be in charge of my own life, making my own decisions. Interdependence and autonomy is my definition of independent living.

I'm willing to work hard to develop my talents, and I realize that I will have to make some compromises, maybe where and how I live. What I don't want to compromise is my autonomy, my ability to make choices and decisions for myself and for my life.

I think the greatest obstacle to my autonomy is society's reluctance to recognize me (and others) as a full member of the community, to recognize that the talents I give and the services I receive are on the same par as those of every other member of the community. The services that I need are not charitable services that a provider can provide when he or she finds it convenient. I do not need to be grateful for jobs done halfway or inadequately, nor accepting of disrespect of my personhood.

My need for clearing of snow-covered curbcuts is as valid as a driver’s need for clearing of snow-covered streets. My need for a personal care assistant is no less valid than a working parent’s need for capable childcare. My need for prompt, precise repair of a broken piece of necessary medical equipment needs to be respected as much as the need for any community member to have a repair of a gas leak in their basement. My need for a textbook on tape on the first day of class is no different than my classmate’s need for a hardcopy of the textbook on the first day of class.

My experience with the UIC Assistive Technology Unit gives me hope for the future –hope in others’ ability to respect and serve me, and hope in my ability to contribute to others.

Description of picture: Me, laying on my mat table and working on my laptop with my trackball and voice recognition equipment