Lipstick on a Cruise Ship

“How could I have gotten so old without figuring out how to interact with people in wheelchairs?” Sure, I had encountered people in wheelchairs and walking with walkers and on crutches, but I always kept my distance.

What should I say? How should I act? The answers had eluded me much as the appropriate dialogue when faced with a death. My mother taught me to say “How do you do” when introduced to someone—I always felt stupid and wanted to say “Hi” or just “Hello”–but I learned to be as polite and refined as my mother insisted.

My mother never taught me what to say, or whether to say anything at all, to someone in a wheelchair. I can only surmise that she didn’t know how to react either.

I finally learned a lesson a few months ago while on a cruise. It was one of those perfect days at sea that I had come to love when on cruises. We didn’t have to disembark, to go through another store with diamonds, jewelry, watches, or just stuff, when the ship pulled into another port just like the last one and all those before.

Sitting on the deck at a table in the shade near the pool and trying to ignore all the chaos around me (It was Thanksgiving week and there were lots of kids aboard.), I was reading something, I have no idea what, on my Kindle, and didn’t even notice the woman in her wheelchair who had pulled up near me. She was very thin, could not sit without trembling and shaking, and was obviously very ill with what I never did figure out.

I reached into my bag for a lipstick and, while putting it on by rote, as I had done thousands of times, the woman in the wheelchair said she really liked the color and asked what it was. I had never taken the time to think about physically challenged people enjoying all the seemingly dumb things we do every day.

Taken aback, but trying to be cordial, I looked at the lipstick, read the name of the color, and proceeded to tell her how much I liked it, had just discovered it at Walmart, and how much I wanted to buy more. (True to form with almost everything I like, it has since been discontinued.) How, I wondered, could this woman even think about something as frivolous as lipstick? I couldn’t figure out how she even applied it with her trembling hands.

She then looked in her purse for her lipstick to show me the colors she liked. Talking about lipstick, I was able to forget how disabled my new friend was. For the rest of the cruise, every time I ran into her, we were friendly and easygoing.

How many times, I kept thinking, had I looked right through or simply ignored a person in a wheelchair or leaning on a walker? How awful each person must have felt when treated as a non-person. How awful had I made each person feel?

It was the casual encounter with the lady with the lipstick that changed my attitude. By chance, very shortly thereafter, my daughter approached me with a tale of meeting a woman who trained service dogs for the handicapped and how, as a medical researcher, she was interested in conducting a study to prove the positive effects of service dogs on the quality of life of people with multiple sclerosis.

As we had done many times, we began our collaboration, intending to work together on the grant proposal she had been thinking about. The project grew and grew and evolved into msbeyondmeds.com.

Fortunately, I had learned so much from the lipstick that I was able to interact with each person working with a service dog without any trepidation or embarrassment. In much the same way as I had learned to speak with my children like they were adults from the minute they were born, I was able to engage in conversation with each person without the handicap running interference.

I am so enthralled with the people I have met. I admire them for their spirit, for their approach to life despite severe handicaps, for their openness in sharing experiences, and for their individuality. I had never expected to have friends with severe handicaps, thinking, of course, that these things happened to other people, but my life has changed for the better.

And, as a result of the research we are doing and spreading the word about the value of service dogs, we will make our small contribution.

I wish everyone would remember the lipstick.

Link to Federal ADA Law

Federal Law re. small businesses

Here is a link to the Federal Law as it applies to small businesses. References to service dogs are on p. 4.

My Angel with Paws

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Wheelchair Kamikaze

Stu’s article in MS Views & News

Don’t feed your dog these foods.

Check out this article about foods your dog should never eat.

Two research studies on the influence of service dogs

In 1996 Karen Allen and Jim Blascovich conducted a study that included, but didn’t specifically focus on, some MS patients. The authors recruited 48 people, randomly assigning half to receive service dogs immediately and half to a waiting list to receive the service dogs 13 months into the study. They found that the people with the service dogs showed substantial improvement in self esteem, internal locus of control and psychological well being within six months of partnering with the dogs. Socially, all the participants showed improvements in community integration. They were absent from school and work less frequently and were able to dramatically decrease the number of paid and unpaid assistance hours.
The Allen and Blascovich study was conducted in 1996, and published in the Journal of the America Medical Association.

A qualitative study was conducted by Mary Michelle Camp and published in the online magazine Working Dogs and in The Journal of Occupational Therapy in 2001. Ms. Camp interviewed people with service dogs, asking qualitative questions like “Tell me about owning a service dog,” and observed them as they trained and worked with the dogs. She found that the participants used their dogs to assist in tasks including, but not limited to, bracing them as they stood up, opening doors, turning lights on and off, bringing them the phone or remote, placing clothes in the laundry, and retrieving dropped items. All the participants described an increase in participation in social activities since partnering with their service dogs. The dog could pull the wheel chair or encourage the participant to go outside. They also told about companionship, independence, increased self-esteem, security, more social contact and skill development. They felt that people saw them again and believed the dog to be a “bridge between them and the rest of society.” They had close social relationships with their dogs and had just plain fun.

Helping spread the word to the MS community

Made some great contacts: Amy Gurowitz, Marc the wheelchair kamikaze Stuart of MS Views and News. They should be able to help spread our service dog message to the MS community. The more people discover how much service dogs can enhance quality of life, the closer we will come to our goal: to evaluate the influence of service dogs, help the MS community and get medical insurance providers to cover service dogs because they will ultimately reduce medical expenditures.

Service dogs are more than companions.

I attended a meeting of the MS Society last night. After speaking with several people, I realized that it would take some work to convince people that service dogs are not just companions to make you feel better, but really work to make life easier. Service dogs can help people regain their independence by completing the tasks that MS makes impossible.

Your service dog will pick up the remote, hand you your cell phone, open the door, help with laundry, close or open a door, hit the elevator button, and on and on.

I sincerely hope I can help get the word out because the dogs can really make life with MS much easier.