David Gayes

Filed under: Themes, Cerebral Ballsy,  Wheelchairman of the Board, Top 10 Lists

Top 10 Tips For Service Providers

by David Gayes

Click to continue »

Filed under: Themes, Cerebral Ballsy,  Wheelchairman of the Board

Relationships

by David Gayes

I’ve been thinking about the connection between disability and friendship.

What makes a friend? What do I look for in a friendship? What do I like about my friends?

Well…

Click to continue »

Filed under: Themes, Cerebral Ballsy,  Wheelchairman of the Board

First Loss

by David Gayes

Each summer when I was little, my family would rent a cabin in Wisconsin. For me, a highlight of the vacation would be an afternoon of horseback riding. My dad and I would ride double on the horse. I would sit in front of him, leaning on him for support. My dad would hold me tight and keep me stable. I loved it! My horse was always a calm and friendly one. I would pet the soft, smooth fur and talk to my horse by name. I felt safe, while experiencing the up-and-down rhythmical movement of the horse. I especially enjoyed the thrill of the horse galloping. We’d ride a trail that went through the woods, feeling the cool breeze, listening to the chatter of the birds, and smelling the fragrant flowers and pine forest. The woods felt majestic and peaceful, and I felt contented exhilaration on that one hour trail ride.

One summer, when I was about eight years old, I was totally caught off guard when my dad told me he could not safely ride double with me anymore. I was shocked. I couldn’t believe it. Why couldn’t I do something that the rest of my family could do? Would I be able to go horseback riding when I got older? How could it be that my strong dad could not keep me safe on a horse? What else wouldn’t I be able to do? Click to continue »

Filed under: Themes, Cerebral Ballsy,  Wheelchairman of the Board, Interviews

Day At Work

by David Gayes

I interviewed Chris and his mom, Sheila, (real names used with permission) about Chris’s job. Chris is a mail clerk for Rotary International. He has had this job since 1993. He works 40 hours a week, has full healthcare benefits, and paid vacation time.

Chris describes a typical workday:

Click to continue »

Filed under: Themes, Cerebral Ballsy,  Wheelchairman of the Board 

The Idea

by David Gayes

The idea to interview people with disabilities took root about four years ago. At the time, I was feeling discouraged during a long recuperation from a difficult surgery. Lying around in pain gives one time to think.

Click to continue »

Filed under: Themes, Cerebral Ballsy,  Wheelchairman of the Board 

Sandbox Lessons

by David Gayes

I was listening to the song “You’ve Got to be Carefully Taught” from the musical South Pacific. The song asserts that children are not born racist, they must learn to be racist. I think that same truth applies to ableism. Children are not born believing that some differences make a person inferior; they have to be taught. It’s easy to see how Jerry Lewis’s Muscular Dystrophy Telethon, inaccessible buildings, overt discrimination, or the common use of words such as “retard” or “cripple” teach ableism. It is more challenging to realize that even well-intentioned people, themselves products of the culture we live in, can inadvertently foster the ableist paradigm in children.

My mom remembers a telling story that took place on an ordinary day many years ago…

Click to continue »

Filed under: Themes, Cerebral Ballsy,  Wheelchairman of the Board 

Jury Duty

by David Gayes

Last Tuesday, I had my first jury duty. I had heard that the experience was very long and tedious with a lot of waiting around. Because of my low stamina, need for help going to the bathroom, pain with prolonged sitting, inability to handwrite, and need for help with eating, I had valid reasons to get out of serving. What’s more, it’s always such a hassle to have to prove myself and advocate for myself in a new setting. It was very tempting excuse myself. However, I decided to give it a try because I had heard that jury duty was a good learning experience, and I thought it would be a way for me to contribute.

Click to continue »

Filed under: Themes, Cerebral Ballsy,  Wheelchairman of the Board 

Independent Living

by David Gayes

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.

David Gayes recently took a year away from college to pursue an interview project he called Growing up with a disability. In these interviews, David recorded the stories of people living with disabilities—personal stories, real stories. He’s a natural interviewer, and his writing is at once funny and witty and poignant and lyrical.

He’s currently back at college, studying hard and at a hectic pace, but look out for his name in a few years, because our money’s on him taking the world of journalism/media by storm. [Note: although he won’t be conducting too many new interviews for awhile, David will still be updating his blog whenever he can.]

In David’s own words: “I like sports, music, travel, and conversation. And, I have cerebral palsy. I believe society often underestimates the complexity of living with a disability—the joys, the challenges, the ordinary, and the extraordinary.”

Permalink / Comments