Friday, December 4, 2009

Modern Love: Another Reaction


A teacher in our school has adopted “A Day in a Wheelchair” and is providing a couple of wheelchairs per day for staff and later, students, to “break from comfortable routine, the courage to act, the courage to be an agent of change, and a leader in our community...”


I had the privilege today. And I share my experiences. But first, I read Seven Wheelchairs over the Thanksgiving break.. Congratulations on a beautiful memoir and the recent attention in New York Times. You do have a magical gift with words; your story speaks of courage, pain, triump, humor, anger, and beautiful love! You are a role model in many ways for everyone. Keep writing and publishing!

Today’s thoughts ...
In the chair for the first time, I was positioned to see down a long, empty hallway. My initial thought, “Oh, what a long journey.” I have never looked at this hallway in the same view. I think this journey is symbolic of a bigger thing…the journey of life in a wheelchair.

As I took off on this journey, I saw I was in for a slow walk. A kind student came right up and asked to push me to the library. In a second, we were off. I didn’t forget the two important words…thank you!

I seem to be noticing natural things more. I hardy take the time to see the sun rise in the library, but today, my view is at a slower pace. And thus, I marvel at the sun shining in my office. But with my inexperience as a wheelchair driver, I am not moving too quickly and the sun begins to be a nuisance as it needs to move, rather than me move!

My first big lesson, BE CAREFUL when bending over to pick something up. I almost fell out of the chair. These chairs are wicked! Is it okay to laugh at yourself? I think so.

It is amazing the looks and stares from people. On the way to the lunchroom, I wanted to say, stop staring. Many students do indeed treat the wheelchair occupant as nothing out of the ordinary but others simply stare. It is a comfort when a person pops up and says, “Hey, let me help you carry that lunch or push you through the hallways.”

Our pathways are tight throughout the school. I see from this experience that it would be nice if people would push chairs back in and tidy the rooms. It is easier for accessibility when the pathways are clear.

I went to the Library Café for a cup of hot cider. I didn’t think about being a one-handed driver with a cup of cider. It didn’t work; I went in circles. Again, I discovered helpful students to get me from one location to another. More thank yous!

Oh, about the bathroom experience -- Being a staff member, I thought I would tackle the office restroom. No way! Even though the sign said wheelchair accessible, it was not!

I then proceeded to the girls’ student restroom with a similar sign. I had to have help with doors getting in and out! In the stall, I got stuck in the room backwards. What an experience! I hope it is not cheating that I had to use my feet to push myself backwards out! And then, I couldn’t exit the outer door. I opened the door enough to holler, HELP! Thanks to the young man who came into the bathroom to hold the door open wide enough so I could maneuver my way out! I had a large wheelchair that was forever getting stuck!

I enjoyed talking with a fellow student in his wheelchair. We talked about muscle strength, interests, and the normal school talk. I encouraged him to pursue whatever his heart desires for future after high school.
What I learned?
I am clumsy. Southeast Polk students are helpful for the most part, either by volunteering or with a simple please and thank you. I can maneuver a wheelchair with practice but do leave some nicks and dings along the way!

Door entrances are tight. We need to push chairs in for easier handicap maneuvering. Let’s just do it, without being asked.

Life moves at a slower rate in a wheelchair. I see things at this level that I might have missed a few feet higher up! Seeing the sun shine in the library today was a good feeling; ordinarily, I might have moved away from its glare and missed this feeling of appreciation.

Matters not if we are in a wheelchair or on two feet. We are all the same and valuable to this Earth, yet diverse from one another in some way. There should be no pity or sympathy for an obvious disability. We all have disabilities that just don’t show. Each life on Earth is important and should be lived and appreciated to the fullest. I am happy to have participated in this experience. Thank you, Southeast Polk, for this opportunity.
Thank you, Mr. Presley, for shedding light on the diversity, important gifts, and beauty within each and everyone of us!



Seven Wheelchairs: A Life Beyond Polio, Gary Presley (Univ. of IA Press, 2008)



Words spoken by Mr. Presley…


…murky line between compassion and pity, sympathy and condescension…


Sincere sympathy may be a little better, but I don’t want it. Whatever warmth it provides you, it is of no value to me. Empathy, silent empathy, which unvoiced assumption of our commonality, I suppose is best of all. Empathy does not ask me to decide if I am worthy. Empathy simply recognizes we all ride this world together…


p. 224

My response ...
I thank you sincerely for your kind words about my book, and I appreciate you taking the time to write, Ms VanHook.

Truth be told, many in the disability rights movement are ambivalent about "wheelchair demonstrations" -- primarily because such experiences do not reflect some of the most ugly aspects of life faced by people with disabilities (employment issues, discriminatory health care, etc.) but I think you've hit upon one important aspect of their value: an example of the need for universal design.

While I cannot remember if I stated it outright in my memoir, I know the implication of the story of my early isolation illustrates the ... idiocy of the resistance to making every home and business totally accessible. I would have recovered emotionally and perhaps even physically far sooner had I been able to visit friends and family without undertaking a major logistics enterprise.

Another thing that struck me about your thoughts is the idea that courtesy and empathy seems to bubble up when a person with mobility disabilities is in need of a bit of help.

Too bad, I think, that we are not as thoughtful in general.

Long ago, I used to refuse help. I reached a point where I accepted it. I apparently have evolved further -- now I ask for it, from friend and stranger alike. I suppose it's another aspect of my belief that I can "advocate" for disability rights (for that "commonality" which you quote from my memoir) by simply being present in the world, by refusing to sit in the background, by making my needs known whether that be assistance in opening a door or the insistence that society will continue to segregate people with disabilities because we are not visible in society unless we turn to (among other things) universally accessible design.
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