Wheelchair Ease: The Internet, England, & My Summer Vacation

Internet publication URL: www.independentliving.org/docs3/tusler01.html

Advice and Testimonial

Published wiith kind permission of www.disabilityworld.org

As an American obsessed with avoiding saturated fats, England was a trial. My wife, Lyndi, and I found mayonnaise and butter in abundance at any restaurant or pub. Thankfully, house trade in an English village had a wheelchair accessible kitchen. For the first time in my life I could easily look into the pots while I cooked. The sink also had clearance for my wheelchair. Everything was at my height.

What? A kitchen with wheelchair access? Yes. A wheelchair traveler becomes grateful for lack of steps and a just wide enough bathroom door. Any other concession to access is a gift and fortuitous. I could not believe my luck. In England, 5,600 miles from my home, I found an entire house that welcomed me in my wheelchair.

For the first time in my life I lived in an accessible house. I gloried in its ease and comfort for three weeks. We disabled people are very good at "making do." And I do. Where it's critical to have my physical space needs met, I have them. But, where it's not critical, it's not always there. I can reach the coffee maker and grinder, but have to get a reacher for the cups. It works.

Often during those three weeks I sautéed courgettes (zucchinis) from the garden in garlic and olive oil to rescue bottled pasta sauce from ordinariness. After dinner I would be seized by a desire to wash up. Perhaps it was vacation, but more likely it was the accessible stove and sink.

I've used a wheelchair for forty-nine years. In my home I have a cutting board at my height. There are dinner plates and bowls in a low cupboard. The rest of the kitchen is conventional. When I want to see how my stew is doing in the three-quart stockpot I hoist myself up on the armrests of my wheelchair and take a quick peek.

How does one arrive at a wheelchair paradise? For me, it was the "Accessible Vacation Home Exchange for People with Disabilities" athttp://www.independentliving.org/vacaswap.html. I can't remember how I first discovered this wonderful use of the internet, but with my flexible schedule as a consultant I haunted their pages. The web site is a service of the Independent Living Institute, a Swedish organization serving "self-help organizations of disabled people who work for equal opportunities, self-determination and self-respect."

The Vacation Home Exchange has listings from disabled people around the world offering their homes for an exchange. In its simplicity it reminds me of the personal ads. Short or tall? Moonlit beach walks or opera? Paris or Auckland? Countryside or city? Just looking through the ads is a travel adventure. "Oh, Lisbon? I hadn't considered that!" "Kansas, I don't think so."

Lyndi and I got so excited we decided to post a listing for our house. We live in Northern California in "Wine Country." It is a beautiful area close to vineyards, the ocean, and San Francisco. We thought our location would draw interesting exchange possibilities. Lyndi's experience includes tourism promotion; mine is in college disability services. Our posting extolled the virtues of our location and specifics about wheelchair access. I added a sunlit photo of our living room with my two antique wheelchairs.

We kept looking at the already posted ads, but didn't see any appealing enough to inspire us to action. We posted our own home late in the summer of 2000, checked for new postings and hoped someone would contact us. We were wallflowers waiting for someone to ask us to dance.

Like searching for a possible long term relationship in the personal ads, a house exchange can also be nerve wracking. I can't say that I checked my e-mail more often after posting our ad, but I know I always had that little gleam of hope just about every time I looked at my in-box. We got one inquiry during the winter. It was an apartment in Paris. Our lack of ability to speak French made communication difficult and the austere pictures weren't compelling enough to inspire us to make the leap. Another inquiry came from a Manhattan apartment dweller. New York sounded good, but the timing was wrong.

In late May another e-mail arrived. On the surface it was an unassuming message from Brenda Baker, an English woman in Warborough, a small village near Oxford. She asked about finding self-catering apartments with roll-in showers in Northern California for the month of October. She had seen my ad and thought I might be a good source of travel information. First, I had to ask what self-catering meant. It's the British term for a vacation rental with a kitchen. I gave the writer suggestions on finding lodging and warnings about the sheer size of California. (Many Europeans and some Americans do not have a frame of reference for the long distances between California's different urban areas.)

She e-mailed back and Lyndi answered. Out of friendliness Lyndi provided information about ourselves, our house, the weather, and travel tips - no one was talking about trading houses. As the relationship evolved, we began to think maybe we could provide Brenda's California self-catering. Lyndi and I offered it to her. She accepted on the condition we could make showering accessible.

Brenda's house was custom designed and built by her in 1991 with an open floor plan and wheelchair access. It's located in the countryside an hour and a half northwest of London. She included pictures in an e-mail. We were struck by the hardwood floors and open design that looked so much like our house. I was able to place photos of our home on a personal web site for her to see.

As we got to know each other through the e-mails we each felt better and more trusting about the other. As the likelihood of a trade got more serious I began to look critically at the messages. Is this person a flake? How responsible does she seem? Are my e-mails answered quickly? Does she respond to my questions and concerns? It has been a long time since I have been on a romantic date, but I was reminded of the fragility of a new relationship and need to balance caution with optimism.

Our English correspondent originally suggested an October trade but a more accessible offer from the East Coast arose for her. It was our first dilemma. Our relationship was well enough established that we wanted to make something work for both of us. We liked each other. We liked each other's homes. It seemed too good an opportunity to pass up. Brenda found she was able to take two trips to the U.S. because both of her trades were willing to trade vehicles saving her enough for both. We determined that August might work. Suddenly our lead time dropped from three and a half months to six weeks.

Then began the real work. The Out box of my e-mail program shows over fifty messages to make the trade. Some of the communication was three novices doing their first house trade. It took three or four messages for me to adequately explain some access issues while other topics vould have been handled by leaving information in the house. Here in California we had been having electrical blackouts. One night I e-mailed detailed information on how to read the newspaper's warnings to anticipate when the next one would occur. Of course blackouts had ended by the time our European visitor arrived.

E-mail is an ideal medium for our planning and negotiating. The eight hour time difference made real time communication difficult, but an e-mail could be written and sent at any time. The writing and responding to e-mail helped me to think through my concerns and needs. We had clarity that I don't think would have happened with telephone calls, not to mention the cost savings.

Eventually, Lyndi and I realized we had to develop an owner's manual to leave for our guests. Everything from whom to call if the washing machine breaks to how to turn on the computer. Much of it was overkill from two of us worrying about every little thing, but we now have it for the next time. One section was developed a couple of years ago to orient a house sitter, so we began there and added to it.

There were three main issues to negotiate - all of them disability-related. It tried the patience of each of us at one time or another. Our abilities to communicate our concerns and respond to each other with patience, compassion, and attention was the key to our successful venture.

Brenda uses different live-in attendants on a rotating basis for her personal care. In August it would be a Czech. The United States required her to have a visa. We had to make all of our arrangements over the next few weeks knowing that if the visa didn't come through Brenda would have to cancel.

Then there was the weather. Brenda has Muscular Sclerosis (MS). Like many with MS hot weather can be difficult for her. Sonoma County, where our home is, can get into the 90s Fahrenheit (mid 30s Celsius). I found myself becoming over protective even after twenty-five years of teaching college students independence skills. It was then that our solid relationship paid off. Brenda told me, politely, to back off and let her decide what would work for her. Thank goodness, I listened and let her decide. Between the cool mornings, auto air conditioning, and a spray bottle of water she did well.

The biggest issue was bringing my house up to the level of wheelchair accessibility for someone who could not use their arms to transfer. Many e-mails were sent detailing needs and the progress of corrections. I thought my professional experience providing public, disability access would be enough. But, I learned a lesson about the difference in providing public access and making a home work. I'm lucky that Brenda was so clear in her needs.

She needed a shower chair. I found one to borrow. We didn't have a roll-in shower but she was willing to shower with bucket and hose on the back deck, as she had in Cyprus the previous summer. (I was quickly learning how adaptable and adventurous she is.) When she asked me to do a trial run through the house with the shower chair I thought it wasn't really necessary. It was a good lesson. The threshold to the back deck was ramped on both sides for my manual chair, but it wasn't really very good for the six-inch, hard casters of the shower chair. I found and purchased an aluminum ramp on eBay that helped, but Lyndi and I figured there had to be a better way than showering on the back deck.

Somehow we realized that a carpenter could build a platform into the large stall shower in the master bathroom. The aluminum ramp worked to get in. With the addition of a hand held shower it was suitable for someone who needed help with bathing. It is not the best roll-in shower in the world but it worked for Brenda for three weeks.

And I needed reassurance that I could find a doctor that knew something about disability issues. After repeated bladder infections I was very nervous about being away from my own support and doctors. Brenda researched my access to her health clinic and came back with explicit guidance about finding medical assistance once in England. With her knowledge about urologists, disability, and the English medical system I was reassured. As it turned out I didn't need to use the information.

Each of the three, big disability issues had the potential to make the trade unfeasible. At each juncture we had to be clear with each other about our needs and their ramifications. As we worked through we began to trust each other more and more. When I told friends that I had found someone on the internet to trade homes with they were anxious for my safety (and maybe, sanity). They didn't realize how well Brenda and I knew each other after dozens of messages weathering crises. After living through each other's crankiness, hesitation, anxiety, and excitement we knew and trusted each other. I don't think that the relationship needs to be as intimate as ours was, but a solid connection is critical for a successful exchange when disability access is at stake. Fortunately, Brenda was always willing to take a chance and make things work if her basic needs were met. She was able to articulate her minimum requirements as well as her ideal situation.

And then we had to make the house generally suitable for visitors. We sorted and cleaned off the dining room table that had become a mail and projects area. We emptied a couple of drawers in each the bedrooms and bathrooms. We found room in the closets. Our local hospice thrift store benefited greatly from this adventure of ours. We had developed enough trust by this time that we didn't feel the need to hide the silver.

The final weeks before we were to leave were filled with planning what we were going to wear in Europe, getting a small camera, and trying to decipher the privatized British rail system for our travels after the house trade. I tuned up my wheelchair. Lyndi and I did a trial packing of our bags. I found out that my disability parking placard is honored in the UK, just as Brenda's "Orange Badge" is honored in California. We decided to keep our local newspaper subscription coming to our house. Brenda, as it turned out, did the same.

We also began to alert the neighbors, our friends, and relatives that an English wheelchair user and her attendant would be staying in the house. We wanted them to be available to provide information, help, and guidance on the local area. They were all delighted to help out. Brenda's most memorable experience was an accessible hike to a redwood grove with our best friend.

The final arrangements were put into place. We found a college age student to drive us to the San Francisco airport. We had planned to fly out at about the same time Brenda and her attendant arrived. Our driver met them at the gate and drove them home with a sightseeing detour through San Francisco. We were picked up at Heathrow Airport by Brenda's local taxi driver, who pointed out George Harrison's estate on the way to our new home.

We had agreed to trade cars. It made my England experience so much easier as Brenda left behind her back-up electric wheelchair which fit into the rear of her estate (station) wagon. I was able to have a power chair for siteseeing and walking the English paths. She took her day-to-day power chair to the U.S. It disassembled enough to fit into our sedan giving her mobility. A check with our insurance companies confirmed that we would have coverage, at least for liability, at both ends.

One of the few items we physically mailed to each other was the face sheet of our automobile insurance. The other was a box of urinary supplies that I sent by airmail. It cost about $60.00 USD, but was worth it for the convenience of not having to carry it on the plane. Brenda confirmed its arrival, which reduced my worries.

Finally, the hectic whirlwind subsided as we left for the airport. Anything that was undone wouldn't get done. We arrived in London at six in the morning, incredibly jet-lagged and disoriented. I was so glad we didn't have to negotiate strange roads in a foreign country while driving on the "wrong" side of the road.

We settled into our new home. The rewards of our hard work were immediately apparent. The house was lovely. The wheelchair access was unsurpassed. She left notes on where to find the nearest market and maps of the area. We each left dinner in our fridge for each other.

I loved having Brenda's back-up power wheelchair for walks down to the village. I can get around alright in my manual but for distance I really need electric or human assistance. I knew she would have a reacher or grabber for getting items off high shelves - there was. I could roll under the kitchen sink, the bathroom sink, and the stove top. The home was a total joy and felt comfortable from the first minute.

I knew that we would be trading homes and autos, but I had not realized the extent of the trade. I found that we had also traded friends, relatives, and neighbors. On our second day we ventured out to the local supermarket. The women just ahead of us in the check out line turned and said, "Oh, are you staying at Brenda's, then?" My wheelchair was the giveaway, I guess. We were quickly known throughout the village as "the couple staying in Brenda's house." The first day the house keeper dropped by to explain anything in the house that puzzled us. Soon, the neighbors dropped by and arranged to take us sightseeing. The proprietor of the local market quickly accepted us into the daily, local information exchange because we were a known quantity being "Brenda's house-trade people."

What a relief to finally be on vacation and to realize how well it was all working. When we got back from our first jaunt to the supermarket the phone rang. It was our house trade partner in our house in the U. S. It was the first time we had heard each other's voices. I thought, "She's English!"

We were like excited teenagers on the phone after our first school dance. We could barely contain our glee, talking over each other as we described how well the trade was working. We each found the other's house to work astoundingly well. Brenda said, "Aren't we clever!"

Her one question to me about my house was how I put up with the lack of a bathroom sink I could roll under. "Antony, how do you clean your teeth?" she said, referring to my standard sink- and-cabinet arrangement in the bathroom. "Isn't it amazing what we settle for?"

When I talked about writing an article Brenda reminded me that our material situation is better than many disabled people, which is true. Although a house trade saves money the cost of airfare and other travel expenses are beyond many.

We talked every Sunday. Now that we didn't have to plan we just enjoyed getting to know each other without a looming deadline. We got news about our neighbors and relatives who called Brenda and dropped by. We told her the latest about her son and his visits and calls. Before this when I travelled I felt anonymous. No one knew me. By trading houses and to a certain extent lives, I was known. I liked that comfort. At each step there was a friendly face or helpful friend to ease the transitions.

Finally, the three weeks were over. Brenda was returning and we were off to York, Edinburgh, and finally London. Having only seen pictures of each other, we arranged to get together our last Sunday in England. We were staying in London and took the train out to Brenda's. We spent the afternoon comparing experiences and news of each other's villages. I felt like I was meeting a sister. We have continued to stay in touch by phone and e-mail.

As a disabled person the joy and curse of travelling is the attention I must pay to my environment. Living in my settled house I am able to ignore and be somewhat in denial about all of the big and little accommodations I need to be healthy and independent. Travel requires me to be alert and sometimes terrified. A successful house trade softens the watchfulness and anxiety. I also got to know another disabled person, and my own disability, a little better.


Recommendation #1: We found the experiences of friends to be the most helpful in preparing for a home exchange. Although the practical recommendations in books and web sites are valuable, our friend's example helped us to realize we could successfully do one.

We borrowed Frommer's Swap & Go: Home Exchanging Made Easy, by Albert C. & Verna E. Beerbower, 1986, from a friend. It had a few tips. Bill Barbour has two books that are available, used, from Amazon.com. You might find them at your local library. They are, Trading Places: The Wonderful World of Vacation Home Exchanging, 1991 and Home Exchange Vacationing: Your Guide to Free Accommodations, 1996. Both are Rutledge Hill Press, Nashville.

There are also commercial web sites that list homes for trade. One, http://www.HomeExchange.com, has an accessible category. Looking through the listings I found little specific information about accessibility. On the whole communicating about your access needs as clearly as possible is the key to a successful trade.

Recommendation #2: Because you are negotiating with another disabled person you have a good basis for understanding. But, you still need to be explicit about your needs. Just as you would if you were going to a bed & breakfast inn, or a hotel assume that the other person needs to be told every detail. Then, ask for confirmation of how your needs will be met. This sounds somewhat harsh, but as you two work together you will quickly form a relationship and know whether it's working or not.

Information Information I left (or wish I had remembered to leave) in my house for my disabled house trade partner:

1. Disabilty-related services: wheelchair repair, para-transit, fixed route bus schedules, independent living center with phone numbers and a brief description of their usefulness.

2. Medical resources that I use or know are disabiltiy friendly: urologist, orthopeadic surgeon, family doctor, pharmacy.

5. Inventory of the access features of my house, including a list of the little-used equipment out in the garage.

4. Phone numbers of the neighbors and nearby relatives.

6. Binder of instructions I thought someone new to this country might need while in my house: repair people, instructions for operating the heat and cooling, directions to the local supermarket and gasoline.

6. Basket of tourist information including maps, brochures, and calendar of events.