Gary Presley, author of SEVEN WHEELCHAIRS, now Blogs at ...

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Modern Love: Another Reaction

By Carol VanHook

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.

• drawing image linked from Wheelchairnet.org

"We All Need a Sappy Story ... ?"

image from Wikipedia

A comment on Modern Love from Voulez-vous and Tigger Too ...

"I love this story, Reader's Digest-sappy though it may be."

"I'm Crippled, Not Disabled!"

Illustration of Quasimodo from Wikipedia

I have been surprised by some of the reaction to an essay of mine that appeared in the Sunday, November 29, 2009, issue of The New York Times.

The essay came out on the page at over 2500 words, and the Times keeps Modern Love essays to 1800 words. I worked with the column editor, and then the essay went through copy-editing. There the process came aground temporarily on a sandbar in the form of the word "crippled."

The New York Times does not use the word in relation to people's physical condition. I had used the word purposely, for the same reason I used words like "gimp" and "crip" in my memoir: to take possession of the person I am.

I recognize myself as being "crippled." I do mind being "disabled," which was the suggested substitute, because it seems to echo in its perception of limitation my father's constant admonition against using the word "can't."

I suppose my objection to "disabled" was somewhat hypocritical since I would rather term myself a "person with a disability" rather than be identified one of those ugly terms like "wheelchair bound" or "confined to a wheelchair."

On the other hand, I think the word "disabled" seems infinite, applying all the time in every circumstance, while " ... with a disability" suggests possibilities remain.

Neither the copy editor nor I got exactly the word we preferred. I suggested "paralyzed," and he agreed.


You can read the essay here.

Modern Love in the New York Times

An essay, which is an expansion of an anecdote in my memoir (Seven Wheelchairs: A Life beyond Polio) appeared in the Sunday, November 29, 2009, issue of The New York Times.

You can read it here.

Guest Post: "Home Sweet Home"

ADAPT Supports the Community Choice Act!

“Home Sweet Home”

By Joy Caldwell

“Home, sweet home.” What does this phrase mean to you? What kind of feelings does it stir inside? The feelings and thoughts attached to these words are as unique and different as the person hearing them. Generally though, there is agreement that the word “home” stirs feelings of warmth, welcome, and a sense of belonging in addition to a place of shelter where needs are met in a caring environment versus the word “house” – a physical place of residence providing shelter.

It was with some of these thoughts in mind that I ventured out to visit two of Washington State’s Residential Habilitation Centers (RHC’s) at Fircrest & Rainier in Shoreline & Buckley respectively. Having heard arguments on both sides of the debate – for & against consolidation & closure of these facilities, I wanted to see for myself and form my own opinion. “Are these institutions really home where people live in a place of warmth with a sense of belonging where their needs are met in a caring environment? Or are they institutional houses where people are placed with their basic needs met?”

I was particularly struck by the locations of both of these RHC’s. They are both located in lovely surroundings on large parcels of land, beautifully landscaped in picturesque settings, yet notably secluded and separate from their surrounding cities and communities. Arriving at Fircrest, I couldn’t help but notice the age of the brick buildings, the overwhelming impression - cold and impersonal. Of course the large unsightly food, laundry, and garbage carts located outside the front doors of each cottage confirmed I had indeed arrived at an institution versus a community. Rainier on the other hand reminded me of an army base or prison facility behind the gates and fences with its old-style stark white peeling paint and red Spanish tile roofs, and buildings connected by long covered walkways.

I found the facilities at each campus were clean and maintained, though they felt cold, stark, archaic, and in great need of modern updates both inside and out. I found it peculiar that décor on both campuses looked like thrift store purchases from many years gone by, curled posters, cheaply framed faded prints, outdated curtains hung on barred windows if at all.

I appreciate the work that these residents perform: sterilizing used Comcast remotes, shredding documents, thrift store duties, and pouring beautiful paving stones. However, the biggest factor I found lacking was the sense of community. I kept pondering, “How will the community ever be able to appreciate the values of self-determination, independence, inclusion, integration, and productivity for people with developmental disabilities if they’re kept isolated and segregated? When was the last time these adults and youth went on a vacation, went camping, saw a school play, or heard the laughter of a child?”

At Fircrest, each living room is arranged with one shared T.V. and generic “Dr’s Office” chairs set around the sparsely decorated walls of the vinyl floor room. Each child, youth and adult at Fircrest has their own very small bedroom, meagerly furnished with a twin-size bed and dresser. Out of the dozen or more bedrooms I visited there, only a meager few appeared personalized in any way. I thought, “Even college dormitories are more appealing than this”. Unfortunately nothing I observed about this campus made me feel the least bit inclined to sit down, get comfortable and have a cup of tea anywhere – a pleasure I instinctively link to feelings of home.

To my surprise, I did observe more texture, color and variety when it came to décor and “home-like” comforts in the Rainier cottages, where 8 residents share two warmly decorated living areas per side with more comfortable furnishings, overstuffed chairs and recliners. I noted that some of the Rainier residents also share larger more personalized bedrooms, 2 to a room, comfortably furnished with warm décor. Colorful attractive home-style dinnerware adorned Rainier’s tables while residents ate from standard melamine cafeteria dishes at Fircrest.

I have a daughter with multiple disabilities, similar to many of the residents in these two facilities. When Jessica was born with Down syndrome and cerebral palsy, I was given the option to place her in an institution where she’d be cared for. As I toured the RHC’s, I kept thinking, “Would Jessica be comfortable enough to call one of these cottages home? Would she be happy with the lack of freedom, lack of choices and lack of independence? Is she really safer set apart FROM the community in an institutional house or safer IN a community home?”

I couldn’t help but feel sad and discouraged as I left these properties, wondering if the adults and youth were there willingly or if they’d ever been given a choice. I felt equally troubled for the families who had brought their family members to these houses. What choices and options were they given?

As I pondered the thought of “relaxing and having a cup of tea in the Rainier Cottage”, a wise friend kindly reminded me of the secrets behind these walls – the abuses committed when there is no choice, no freedom, no other option, no way of escape. Are these dear people really at Home Sweet Home or prisoners kept safe inside prettied up institutional houses? My friend is right; I don’t want to drink my cup of tea here either.

As I drove away from these RHC’s, these institutions, these duplex houses, I turned my heart towards the warmth of home. My heart felt lighter as I pondered my daughters, each with her own unique and different abilities - her sense of belonging, her safe place in our home where hugs abound, laughter comes easy, choices are made, freedom is earned and independence is learned. “Home Sweet Home” – the words have never meant more.

Joy Caldwell , Skagit County Parent Coalition Coordinator is a parent of a child with a disability. Joy Caldwell has been both a formal and informal advocate for families and people with disabilities for the past twelve years. Joy has developed and taught seminars and workshops to the general public, early interventionists, therapists, teachers’ assistants, caregivers, support workers, and parents. During her time in Edmonton, Alberta, Canada, she served as Chairperson on the Executive Board of Directors for the Edmonton Down Syndrome Society for two years.

Just Food: A Book Review

I had the good luck to be assigned James McWilliams' Just Food for a review in this month's Internet Review of Books. It's a superbly argued thesis advocating a thorough rethinking of how human beings approach the idea of food.

If you cannot afford to buy a copy, I urge you to check the book out and read it when it arrives at your local library.


Just Food author James McWilliams also has an opinion piece in today's Washington Post.

Read his opinion piece at this link.

Read the IRB's review of Just Food at this link.