This is a Love Letter

wedding reworked

This morning I dreamed of someone I haven’t seen in over thirty years: Pete Doyle.

In my dream, Pete was all mixed up with the actor Henry Cavill, who is a whole ‘nother story, but I knew it was Pete. He was in another bedroom in my old house, down near my dad’s bedroom, but upstairs, in the attic. He was going to buy the house once we had moved all of our things out of it, but as usual, I was behind in my laundry….

I met Pete one spring (I think) at South Street Seaport in the late ’70s. He was part of the pier crew; I was a volunteer docent for the museum, and still in high school. Sometimes our paths would cross, sometimes not, one time I got to go see the inside of the apartment he shared with a couple of pier crew guys. Pete was always a gentleman, and never made a pass at me.

The last time I saw Pete, he was getting ready for a date (not with me), his dark brown curls still damp from the shower, black jeans on, shirt almost buttoned. Pete had green-brown eyes, and a dusting of freckles across the bridge of his nose.

He smelled of fresh shower and Paco Rabanne. No one has been able to or been allowed to wear Paco Rabanne since.

I was lamenting about some late-teenage/early twenties angst. Time, of course, has erased that drama from my memory: It amazes me how many earth-shattering crises are faded out or completely erased by time. But Pete said to me that family life is real life and the working life is our illusion. I’ve carried that with me close to forever now.

I knew Pete was from Massachusetts, around Martha’s Vineyard. I knew he was an aspiring writer. I knew he had worked on something with Chuck Burris — yes, “The Gong Show” Chuck Burris. Pete Doyle, however, is a fairly common name, and I’m not a highly skilled Googlegirl to do more than a couple of search terms at a time.

I miss Pete.

I’d like to know what’s become of him, and if life treated him kindly. I’d like him to know just how much of an impact he made on this one human being, so many years ago. If you had a Pete in your life, let them know they impacted you. If you know my Pete, you’re blessed, and tell him to drop me a line.

Outside, Looking In

…Another in a series of accessibility-related blogs….

I’m back in my soon-to-be-replaced-hip boat, waiting for my June 6th surgery.

Meanwhile, I move around outside my house by wheelchair; indoors I use a four-wheeled “walker.” I’m in constant pain, and everyday, I carefully and dutifully catalog the new aches and pains as the crop up: Currently, I have a strained left wrist, and a right ring finger “trigger finger,” and occasional numbness and tingling in my left thigh.

Exciting times, this.

I try to stay active and get out on weekends.

This past Saturday, I ventured out of my comfort zone to attend an “event” in the first block downtown/old town Belleville, Illinois, and frankly I was beyond disappointed: I was angry that over an hour of my life had been needlessly thrown away.

First I circled the block and consecutive blocks looking for ADA parking, and found none on E. Main Street. I found no signage directing me to any public parking lots that might have some ADA parking. When I found a parking spot on the block I needed, one of the shop owners had parked over the marked white line, giving me very little room to get my wheelchair out of the car trunk and onto the sidewalk. Another shop owner said there was handicap parking on the east side of the street, but when I wheeled myself to that side, I found he was mistaken.

Belleville advertises many, many activities though the year — Christmas, art festivals, etc., but frankly, for those of us who are mobility-challenged and try to remain as independent as possible, it’s a waste of time.

Just Visiting: Old Town Albuquerque

I had my right side Total Hip Replacement surgery on August 30, 2016. It’s amazing, this absence of pain. It, the pain, becomes such an integral part of existance that when you wake up from anesthesia and it’s gone, you’re momentarily confused.

Nevertheless, it’s awesome.

Except for the restrictions.

No bending. No bending while standing, no bending while sitting, so bending past 90 degrees. That means you use a three foot shoe horn to put on your shoes, and get someone else to tie them if there are laces, or you work out something else. You use a special contraption to put on your socks. You do not bend over to wash your feet and legs when you’ve been given permission to shower. No sleeping on your surgery side, and if you sleep on the other side, put a pillow between your legs.

And no driving.

Anyone who knows me, knows “no driving” and “MzSusanB” are mutually exclusive terms but I followed doctor’s orders.

Dr. Surgeon cleared me to drive again three weeks after surgery, on a Tuesday. The next morning I was on the road. First I wanted to see my mother in Atlanta, then I wanted to go to Myrtle Beach. Then, on the road to Myrtle Beach, I turned around and headed for Sedona, and ended up in Albuquerque.

No longer tied to my wheelchair, I was using a two wheeled walker to get around, so accessibility was still needed. Old Town ABQ is not for the faint of heart, as the sidewalks are brick, so the going is bumpy. The old buildings that make up the square often have narrow doorways, and the shops themselves are difficult to negotiate because they’re small and have steps in awkward places.

If you use a manual or motorized wheelchair or scooter, use caution.

But the air is clear and the colors vivid and I fell in love with the area.




Just Visiting: The Art Institute of Chicago (Van Gogh’s Bedroom)

The Art of Accessibility visits Chicago’s famed Art Institute to be immersed in Vincent Van Gogh’s sketches and paintings (as well as other works of art). ChiArtInstitute1312

The Art Institute is breath-taking.  While fairly sprawling, its collections are cohesive and comprehensive, but from a wheelchair accessibility point-of-view, the Institute seems to  lack understanding of the spirit of “accessible”.

IMG_7239Entry into the Van Gogh exhibition was on the second level. As shown above, there were two ques to enter at the pillars, with the introductory verbiage on the left wall and enlargement details on the right. As you went in on the right, you begin to see Van Gogh’s journey to Arles. There was no set path to follow; consequently, there were often bottlenecks as people viewed and backed up to view again, various works.


But works are art are often hung at “eye-level,” and eye level seems to mean the viewer should be roughly the same height as the curator who hung the exhibition.

Even without the wheelchair, I’m 5’2″ tall, but in the chair, any work under glass such as this painting, had to be viewed at a severe angle to avoid glare.


Then there was the opportunity to see works body blocked by those in front of you, which, I guess, is the price to be paid for infirmity.

The worst part of the whole thing occurred in the gallery which housed the three bedroom paintings. There are subtle differences among them, and I had managed to work my way to the front of the crowd, with the intention to just slowly move along with the crowd to view them.

However, a uniformed attendant (guard?) decided that I was actually trying to get out of the gallery and moved me even further in front of the crowd and moved them back so I had a clear path out of the gallery. He then continued to clear paths until I was out of the exhibition completely. I could have, should have, spoken up, but I think I was too dumbfounded to utter a protest.

The exhibition, of course, emptied into a gift shop, but there was hardly room for me to see what was available (sorry, Liz!), and the gift shop exit led you back to entry, on the side of the introduction, where everyone exiting decided they suddenly needed to read the what they missed.

Can you say “log jam”?

IMG_7252The rest of the Institute is fairly easily accessible, with a few tricky places.

As I said, my chief difficulty has to do with the eye level  of art and the accompanying signage. This seems to be a universal problem, which could be easily remedied if the curator(s) borrowed a wheelchair from the concierge desk and travel the exhibition or galleries before deciding final placements.

Look at it from a different point of view and make art truly accessible to all.







Just Visiting: Missouri Botanical Garden, St. Louis, MO

Life, and the Art of Accessibility

Part 1: The Grounds

I will admit it: the Missouri Botanical Garden (MoBot) is my gold standard — “the best, most reliable, or most prestigious thing of its type.”

It is the botanical garden I know most intimately, since it is only a few miles from my home. I have walked it (when I had functioning hips) countless mornings through every sort of St. Louis weather. I have taken thousands of photographs, some that I’ve published in Flickr, others I’ve exhibited. Now that my major exercise is via wheelchair, MoBot’s universal accessibility design is what I use, consciously and subconsciously, to contrast and compare other facilities.

As I said, MoBot is my standard. Only 75 acres within the city limits of St. Louis, this place was once Henry Shaw’s country estate. It is lovingly cared for by staff and volunteers, and hosts several festivals throughout the year.


It features several themed and educational gardens, including the English Woodland Garden, the world-famous Japanese Garden, and the Kemper Center for Home Gardening.


This venue is fairly easy to maneuver — most grades are easy, with a couple that are challenging – such as the slope from the Japanese Garden to the George Washington Carver Garden, but if you take your time with them, you’ll have very little difficulty. I have not found one slope or ramp where I feared losing control of the wheelchair.

While it is not perfect, for the most part, some serious thinking went into the accessibility design for this garden.  — Except for the handicap stall in the Women’s Room in lower level of the Kemper Center: I’m not sure what they were thinking about when they slapped that one in….

In fairness, at this visit I did not try maneuvering through several of the buildings: The Linnean House, The Climatron, and The Temperate House. I was enjoying being outside in the sun and the brisk breeze, and by going into the buildings (especially The Climatron), my lens would have fogged up. In a month or two, when the temperature moderates, I’ll tackle those and review them.

I did, however use the handicap-accessible restroom at the Japanese Garden (a little difficult to get into, since the main entry door is not assisted), and I browsed the goodies in the Garden Gate Shop. The shop has plenty of room for browsing, and most items are within arms’ reach. Staff members were courteous and offered to help without sounding like they were being bothered, even though it was a very busy late morning (a plus in my book!).





Just Visiting: Shedd Aquarium, Chicago, IL

Life, and the Art of Accessibility

My March 12, 2016, visit to the Shedd Aquarium in Chicago, Illinois, was completely accidental.

I had tickets to see the Art Institute of Chicago’s exhibition “Van Gogh’s Bedroom.” The person I was originally going to go with pooped out on me, and so I asked Melody L. to come along with; both of us forgot that March 12 for this year was St. Patrick’s Day weekend. Consequently, when we tried to go to the Institute, streets were closed, information was nil, and we ended up at the Aquarium.

Yes, the Aquarium was jammed with post-parade families; yes, the admission price for the Aquarium and a couple of shows was enough to make me hyperventilate and wonder if I could skip a car payment; and yes, the Aquarium is pretty impressive overall.

Elevators were easy to find, halls were smooth and clean, with no bumps to surprise a wheelchair roll; I was free to look at the exhibits as closely as I could. I never felt I might lose control of my chair while exploring the venue.


Melody and I bought admission to two shows to view while we were there — one was about monster dinosaurs, the other, the porpoise/beluga whale aquatic show.

Each of these venues had wheelchair accessible seating on a higher floor, which gave a feeling of separation from the rest of the audience.


Even with a camera with a decent lens, it was difficult to really see the interaction between the handlers and the animals.


Oftentimes, it feels like accessibility in venues is an afterthought — someone said, “Doh! We need to include disabled seating!” —  and so some regular seats are torn out and wheelchair access is miraculously born.

Complying with the letter of the law (the Americans with Disabilities Act) is not always understanding the spirit of the law, and the spirit of the law is to make it easier to allow differently-abled persons to enjoy the same experiences and sensations as those without challenges enjoy — such as splash zones and close-up views of porpoises and beluga whales.

Overall, while there are some minor accessibility issues at the Shedd Aquarium, I feel it is a fun and easy-to-maneuver venue, and well worth visiting.





Powell Gardens – Kansas City, Missouri

Powell Gardens’ history began as land bought by a business man, and has grown to be a 915-acre behemoth thirty miles east of Kansas City, Missouri, consisting of eight themed gardens, a nature trail and an esteemed chapel . During “peak season,” tickets may be purchased for a trolley that loops the grounds, providing a quick overview of the campus.

Being a member of the Missouri Botanical Garden in St. Louis (my home base), I decided that my road trips would be visiting reciprocal membership gardens. I had heard of Powell Gardens, and decided to make that the starting point.

Misha and I left well before sunrise on an April Saturday morning, treating ourselves to cups of Tim Horton’s coffee before taking I-64 to I-70, westbound. It was a fairly leisurely drive, since we had no fixed time schedule. My wheelchair was stowed in the back of his car, and I had water and fruit. [For why I have a wheelchair, see What Three Years Can Do.]

We arrived around 10 AM. The sky was clear, and the wind a bit brisk. Parking in designated handicap slots was easy to obtain this early in the morning, and the roll to the Visitor’s Education Center was fairly level, if a little bumpy, crossing one internal roadway to the building.

Now, anybody who knows me knows my primary interest is in taking photos, so, in my wheelchair, I had my camera around my neck, a travel pack around my waist, and a plastic handle bag on the chair arms for my water and snack. I had my cane bungeed to the left armrest.

At the Visitors Education Building, the door was opened from the inside by a greeter, who cheerfully gave us maps, and then we went to it. First stop was the Conservatory to see the Blue Morpho Butterflies. I was allowed to stay in my chair, but my travel pack and snack bag had to remain outside lest some butterfly try to escape and violate USDA regulations. The Conservatory was humid as expected, but I did not expect to get actively misted (and neither did my camera). The walkway around the Conservatory viewing area was wide enough for the wheelchair, provided no one wanted to pass me in two different directions.

I felt claustrophobic, and headed out to the main gardens… except that I couldn’t find any clearly marked doors to the gardens, nor power-assisted/handicap accessible doors. I had to ask for directions.

Once out, I found that the garden walkways were mostly switch-backed, and the slopes were unsettling. For the rest of my visit, I was more concerned with not losing control of the chair than I was with trying to compose photographs.

I managed to work my way up the inclines from the Island Gardens (two person-wide walkway ending in sloped vegetation into the lake) to the Chapel, which is truly a breathtaking place. As I approached the beautiful wood doors, I wondered how to enter without scratching or denting them. Luckily, strangers opened both doors so I could roll in without damaging anything.

I texted Misha and said I was heading back to the Visitors’ Center. He suggested that I take the trolley back, but I really felt like getting in the additional workout by wheeling back. Then I realized I would be going downhill, and I didn’t want to, so I said I would take the trolley — and then realized that I would have to fold up my chair and climb into the trolley for the return trip.

The trolley is not handicapped accessible. There is no lift for a wheelchair.

Misha, who is a part-time superhero, came out to the Chapel and carried my chair into trolley for me.

I tried to spend money in the gift shop, but was prevented because the aisles were tightly packed with things leaning out or lying on the floor — I was constantly afraid of breaking things or getting them caught on my chair.

As we left, we noticed parking right by the front of the Visitors’ Center. The area was not marked handicap parking leaving us to conclude that it was reserved for staff or volunteers.

Now, it’s 2016, y’all.

The Americans with Disabilities Act has been law since 1990. Many people live their lives differently-abled  and independently. Not everyone in a wheelchair has an attendant or an aide. I should be able to go and explore a botanical garden without having to rely on or wait for other people to open doors for me. I should be able to concentrate on my avocation of photography without fearing losing control of my wheelchair.

That’s what the ADA is about – independence to experience life.

I would not recommend Powell Gardens to someone with a manual wheelchair like I have, and even if you’re going with someone for company, if you have mobility issues, avoid the trolley. It’s picturesque, but it’s difficult to climb in and out of.